It was a pretty decent day. Of course, that makes me nervous because a good day almost always followed by a really, really shitty one. And tomorrow is brain ultrasound day.
But for now, we go with today.
I liked his day nurse. That's always a plus.
His tests were mostly good.
We wont' know the results of the trach aspirate for a few days because it has to grow in the lab.
His red blood cells were down a bit, so he got another blood transfusion today and will get a 2nd tomorrow. (They broke it up into two parts to try to balance his fluids a bit.)
His sodium levels were good enough that they put him back on the diuretic he was on before again. This should help with the swelling and maybe with his lungs.
His chest x-ray was hazy again. Expected. What he really needs is a round of steroids, but again, we have to wait until we figure out what's going on in his trachea.
The doctor came by today and said that he thinks the bacteria is actually a result of reflux. Apparently the bacteria growing is something normally found in the gut. He said that if it's still present tomorrow, he might change his feeding tube from an NG tube to an NJ tube. Basically, it would go to his intestines instead of his stomach.
Personally, I think that sounds awful, but the doctor assures me that it's no big deal. I asked how it would affect his nutrition and he said the only thing it changes is that they can't give him large doses of strong medicines that way. So they don't and it's fine.
He did scare the shit out of me at one point. I asked how concerned I should be about Robbie still being on the vent after a month.
The doctor responded very, very slowly.
"Unfoooooooorrrrrrrtunateeeeely....." *long pause* My heart stopped. I thought Oh shit. He's about to tell me it's super horrible. He continued "it's pretty normal for these guys to do this. He'll get there." I started breathing again. Phew.
Anyway, our Kangaroo time went well. His O2 needs had been way up early in the day, and were able to come down a lot while I held him. They're back up a good bit again tonight, but at least for a couple of hours, they were better.
I only Kangarooed for 2 hours becaue I had to go downstairs for my head scan. It was pretty uneventful. I didn't know they were going to do contrast. They kept asking me if I was allergic to the dye. How would I know? I've never done this before!
In any case, they asked enough times that I was a little nervous when they injected it, but it was fine. They told me I'd probably feel warm but I didn't feel anything. The whole thing from appointment time to finish took less than an hour. The actual scan itself probably took 10 minutes.
There was a weird moment there. The tech doing the scan asked why the scan was ordered. I explained that I'd had pre-e and had been numb headed since. She asked how early my baby was, I told her. Okay fine.
Well, when she came in to inject the dye (they did the scan w/o it first, then with it) she mentioned that her baby was 3 months old and they'd really been suffering because her baby had colic. I'm pretty sure it was her attempt at "new mommy bonding." Normally, I love that stuff, but I honestly had no clue how to respond.
I think I finally said "I'm sorry to hear that." What should I have said? "Yes, Robbie gets really cranky when the nurses prick his heels." Our new mom experiences are just vastly, vastly different.
I'd had a few glimpses at that feeling previously. When my friend delivered her full term baby last week, I felt a little weird because, of course, my delivery was so different. And knowing she was getting to go home with her baby.. it was a little bittersweet.
But this was the first time that I really felt completely seperated from the other person.
In any case, the scan is done and we should have results on Wednesday.
I called my OB about getting a referral to a neurologist and she was completely fine with that. I called the neuro today but the name my OB gave me is someone who only sees MS patients, so I ended up leaving a message for the office manager to see which other doctor in the practice 1) sees non-MS patients and 2) can get me in the quickest. She left the info on my voicemail just before they closed for the day, so I'll actually make the appointment tomorrow.
Also- I said that David's urologist appointment was on Wednesday. It's actually on Thursday. I could explain how I got confused, but it's stupid and pointless and just chalk it up to I-have-no-idea-WTF-day-it-is disease.
So.. Pray for no bacteria and a good head ultrasound tomorrow. That's our biggest immediate concern.
--Trish
P.S. Because of the contrast I have to pump & dump for 24 hours. I think I may have felt physical pain when I had to dump my hard earned milk down the drain.
Monday, June 30, 2008
Sunday, June 29, 2008
Sunday
Robbie is doing about the same.
He is retaining some water again so his weight was way up last night. He's officially listed at 2lb 6oz (yeah, that gives him a 1 day weight gain of 4 ounces. That's not real.)
As of right now, they don't plan to do anything for the fluid. His sodium balance is too low (he gets sodium supplements in his feeding tube every day) as it is, so they don't want to flush his fluid out and screw him up any more. He's pooping and peeing just fine, so they're not really concerned about it.
They moved some of his tests up. Apparently the doctor shares my don't-know-what-the-fuck-day-it-is disease and thought Tuesday was Monday and ordered it all wrong. He realized his mistake today and moved everything but the head u/s up to tomorrow.
Tomorrow he gets:
CBC
CBG
Trach Aspirate
And..umm.. something else. All but the trach aspirate is pretty much routine. The trach aspirate is to see if the bacteria growth is gone. PLEASE pray that it is.
He started some breathing treatments today because his right lung was a little gunky looking today. Albuterol. His oxygen needs were up a bit today, so the nurse asked if they could start them a bit early and they did. It did seem to help. Let's hope it continues to. He gets them every 6 hours.
They're still hoping to head for extubation at the end of the week again. For the first time, I'm really nervous about it. I just REALLY, REALLY want it to work this time.
He's fussy still. He just isn't every settled. Even in his sleep, he fidgets every few minutes. It drives his monitors crazy. And therefore his nurses. The nurse he had yesterday and today was very, very patient, but I worry that they all aren't so patient. I hate to think of them frustrated by my wee tiny one.
And yes, I know- that's their job. But still.
So, in any case, tomorrow is a test filled day. All of Robbies, and my head scan.
And I guess I'll call my OB and see if I can get a referral to a neurologist.
--Trish
He is retaining some water again so his weight was way up last night. He's officially listed at 2lb 6oz (yeah, that gives him a 1 day weight gain of 4 ounces. That's not real.)
As of right now, they don't plan to do anything for the fluid. His sodium balance is too low (he gets sodium supplements in his feeding tube every day) as it is, so they don't want to flush his fluid out and screw him up any more. He's pooping and peeing just fine, so they're not really concerned about it.
They moved some of his tests up. Apparently the doctor shares my don't-know-what-the-fuck-day-it-is disease and thought Tuesday was Monday and ordered it all wrong. He realized his mistake today and moved everything but the head u/s up to tomorrow.
Tomorrow he gets:
CBC
CBG
Trach Aspirate
And..umm.. something else. All but the trach aspirate is pretty much routine. The trach aspirate is to see if the bacteria growth is gone. PLEASE pray that it is.
He started some breathing treatments today because his right lung was a little gunky looking today. Albuterol. His oxygen needs were up a bit today, so the nurse asked if they could start them a bit early and they did. It did seem to help. Let's hope it continues to. He gets them every 6 hours.
They're still hoping to head for extubation at the end of the week again. For the first time, I'm really nervous about it. I just REALLY, REALLY want it to work this time.
He's fussy still. He just isn't every settled. Even in his sleep, he fidgets every few minutes. It drives his monitors crazy. And therefore his nurses. The nurse he had yesterday and today was very, very patient, but I worry that they all aren't so patient. I hate to think of them frustrated by my wee tiny one.
And yes, I know- that's their job. But still.
So, in any case, tomorrow is a test filled day. All of Robbies, and my head scan.
And I guess I'll call my OB and see if I can get a referral to a neurologist.
--Trish
4 weeks
It was a decent enough day.
Robbie was up and down on his sats like crazy, but for the most part, just outside the normal range. Basically just making a lot of noise on the monitors.
My dad and his girlfriend went by to visit before David and I got there. I guess the monitors were making them very nervous. Both Robbie's day nurse and the respiratory therapist who was there when I had Robbie (she comes to check on us pretty much every day that she works. She's super sweet.) commented about how nervous my dad looked.
I guess they both explained the monitors and why everyone doesn't just jump up right away. I'm sure my dad will never believe them, though. I've explained as well. He's very mistrustful, though. It sort of makes me laugh, except that it's exhausting to reassure him all the time.
Anyway, I digress.
It was a pretty uneventful day for Robbie except that we have a plan for the week.
Tuesday is a big deal. He gets his 1 month head ultrasound. GULP. There's no reason to believe it will be bad, but still. Nervousness!
He also gets another trach aspirate that day. Hopefully the stupid bacteria growing there will be gone by then (Did I mention it happens to be one of the resistant bugs you keep hearing about in the news? Yeah. It is. That's why he got a 2nd antibiotic added a couple of days ago.) and if so, then he'll get another quick round of steroids in hopes to try extubating again at the end of the week.
We really want this extubation to work. Having been on the vent for 4 weeks already is a LONG time. He's entering that realm where he's very, very likely to have long term lung issues because of damage caused by the vent. I have felt very patient about the vent, but today I had a small breakdown in the NICU because it seems like almost all the other babies were on the vent a few days or maybe a week and here Robbie is, 4 weeks later, and still REALLY dependent on it. I worry what it means for him long term.
There was a discussion about his weight gain (and lack thereof) over the last week, but we're all mostly thinking that he didn't gain anything because he was on straight breast milk for several days. The last 3 days (when they added the extra calories back) he's gained like a champ. He's 2lb 2oz as of last night. So hopefully that continues. Cross your fingers.
I believe he'll also get another CBC that day.
So I'm thinking Tuesday is a day I'll want to be at the hospital early.
It's going to be a heck of a week.
My CT scan in Monday. The aforementioned things on Tuesday. David sees the urologist on Wednesday.
Oh, and a friend of a friend is a neurologist and she really thinks I need to see a neurologist ASAP about my head wonkiness, so I have a feeling that somewhere in there, I'll be trying to see some other doctor somewhere.
My little family is single handedly supporting the medical community economy. Fun times.
I'm off to sleep. Please pray for us!
--Trish
P.S. Took a couple of 4 week pictures tonight. He was on his belly, so they're not the greatest, but I hope to get some better ones tomorrow and will try to get them up ASAP.
Robbie was up and down on his sats like crazy, but for the most part, just outside the normal range. Basically just making a lot of noise on the monitors.
My dad and his girlfriend went by to visit before David and I got there. I guess the monitors were making them very nervous. Both Robbie's day nurse and the respiratory therapist who was there when I had Robbie (she comes to check on us pretty much every day that she works. She's super sweet.) commented about how nervous my dad looked.
I guess they both explained the monitors and why everyone doesn't just jump up right away. I'm sure my dad will never believe them, though. I've explained as well. He's very mistrustful, though. It sort of makes me laugh, except that it's exhausting to reassure him all the time.
Anyway, I digress.
It was a pretty uneventful day for Robbie except that we have a plan for the week.
Tuesday is a big deal. He gets his 1 month head ultrasound. GULP. There's no reason to believe it will be bad, but still. Nervousness!
He also gets another trach aspirate that day. Hopefully the stupid bacteria growing there will be gone by then (Did I mention it happens to be one of the resistant bugs you keep hearing about in the news? Yeah. It is. That's why he got a 2nd antibiotic added a couple of days ago.) and if so, then he'll get another quick round of steroids in hopes to try extubating again at the end of the week.
We really want this extubation to work. Having been on the vent for 4 weeks already is a LONG time. He's entering that realm where he's very, very likely to have long term lung issues because of damage caused by the vent. I have felt very patient about the vent, but today I had a small breakdown in the NICU because it seems like almost all the other babies were on the vent a few days or maybe a week and here Robbie is, 4 weeks later, and still REALLY dependent on it. I worry what it means for him long term.
There was a discussion about his weight gain (and lack thereof) over the last week, but we're all mostly thinking that he didn't gain anything because he was on straight breast milk for several days. The last 3 days (when they added the extra calories back) he's gained like a champ. He's 2lb 2oz as of last night. So hopefully that continues. Cross your fingers.
I believe he'll also get another CBC that day.
So I'm thinking Tuesday is a day I'll want to be at the hospital early.
It's going to be a heck of a week.
My CT scan in Monday. The aforementioned things on Tuesday. David sees the urologist on Wednesday.
Oh, and a friend of a friend is a neurologist and she really thinks I need to see a neurologist ASAP about my head wonkiness, so I have a feeling that somewhere in there, I'll be trying to see some other doctor somewhere.
My little family is single handedly supporting the medical community economy. Fun times.
I'm off to sleep. Please pray for us!
--Trish
P.S. Took a couple of 4 week pictures tonight. He was on his belly, so they're not the greatest, but I hope to get some better ones tomorrow and will try to get them up ASAP.
Saturday, June 28, 2008
feelings
There is an email forward floating about about motherhood. In it, there is a quote about being a mother meaning having your heart walking around outside your body.
Being the mother of a preemie is like having your very, very fragile heart stored away under the keep of people you barely know, aren't sure you can trust and sometimes just don't like at all. And then you're expected to function.
Yesterday a friend from a message board wondered how I was doing.
How am I?
I am:
tired
scared
worried
weepy
scared
terrified
hopeful
hopeless
petrified
sad
thrilled
scared
worried
lost
tired
guilty
Pick a minute and any 5 of the above.
When Robbie was born and I asked how much time I should spend at the hospital, I wondered if I'd manage to stay 8 hours. Now I find it difficult to leave after 10 or 12. I cry all the way home.
Tonight I cried halfway home and then got mad.
This isn't right. It ISN'T RIGHT.
Babies should not go through this shit. When they're irritable, their moms should be able to pick them up and rock them. They should be able to pat them and talk to them. Moms shouldn't need a team of people and permission.
There should be a cure for pre-eclampsia. It's a condition that has been around well.. forever. And the answer is........bedrest? Which clearly just does NOT FUCKING WORK.
NICUs should have beds next to isolettes. And showers. Because moms with babies in the NICU should be able to live there.
Moms should not have to choose between paying their bills (going back to work) and spending time with their babies.
The sight of a pregnant cousin due within a day of a mom shouldn't make them jealous and sad.
None of this should be. And of course, I'm fully aware that life isn't fair and "should be" an "shouldn't be" don't mean diddly squat. But it sucks.
Robbie had an unsettled day. Nothing tragic, he was just cranky. His day nurse said he was only happy on his belly. He'd been cranky on his back and side early in the day. Not unexpected, and sometimes a baby has to do things he doesn't like.
She left at 3, having taken a few hours off to go to a wedding.
When the evening nurse took over, I kangarooed for a couple of hours, but Robbie got really, really hot and had to go back to bed because he wasn't cooling down as quickly as she'd like. He did cool down okay once he was back, though, so it was okay. But still scared me.
After he'd gone back to bed, shediscussed his lengthy ventilator requirements. She used terms like "chronic lung disease" and "respiratory distress." None of this is really decided until Robbie reaches 34 weeks gestation, but with as long as he's been on the vent, it's almost guaranteed. Dr. C already mentioned he'd be coming home on oxygen. I can live with that. Inconvenient- yes, but we'll manage. But thinking of the additional struggles this means for Robbie.. well.. it breaks my heart.
Then his night nurse came. Yep. The one I don't like. When I saw her come in the door, I thought "please don't let her be Robbies." No such luck. My heart sunk.
Another nurse came over to ask how I was doing and about Robbie. As usual, her kindness choked me up. I wasn't crying, but was clearly battling not to when the evening nurse asked her what she'd done to upset me. I explained my whole "don't be nice to me or I'll cry" thing and they looked bewildered. (??) Evening nurse hugged me as she left for the night.
Amazing the differences between all of them and night nurse. I hung out for a while and she seemed to be very attentive to him. I visited my friend who just had her daughter for a while and then headed back down to check on Robbie again.
As I walked in, he was alarming- his heart rate was over 200. This hadn't been a problem all day. His bed said he was hot, but when we took his temperature, it was normal. She even got me a 2nd thermometer to make sure. He was a bit fussy, but not so fussy that I would have expected a heart rate that high, so being hot would have made sense. But it wasn't the case.
I managed to calm him down and get him to sleep and his heart rate slowed a bit, though still higher than I would have expected. I felt sick thinking about leaving. I just don't trust his nurse to pay attention.
She was doing fine, honestly. She even went and got a new isolette because she couldn't figure out why his bed kept saying he was so hot when he wasn't. It was warming in preparation for him when I finally pulled myself away.
She was going to move him when she did his cares at 1am. It's 1:30 now. I figure I'll give her to 2, then call to see how he's doing. I'll give her time to get him moved and settled.
All I REALLY want to do is drive back up there and see for myself.
I just feel sick, really. It's MY job to keep him safe. I should be there. But I have to sleep and shower sometime.
So here I sit. Feeling worried, tired, worried, terrified, and scared. There's your 5.
--Trish
Being the mother of a preemie is like having your very, very fragile heart stored away under the keep of people you barely know, aren't sure you can trust and sometimes just don't like at all. And then you're expected to function.
Yesterday a friend from a message board wondered how I was doing.
How am I?
I am:
tired
scared
worried
weepy
scared
terrified
hopeful
hopeless
petrified
sad
thrilled
scared
worried
lost
tired
guilty
Pick a minute and any 5 of the above.
When Robbie was born and I asked how much time I should spend at the hospital, I wondered if I'd manage to stay 8 hours. Now I find it difficult to leave after 10 or 12. I cry all the way home.
Tonight I cried halfway home and then got mad.
This isn't right. It ISN'T RIGHT.
Babies should not go through this shit. When they're irritable, their moms should be able to pick them up and rock them. They should be able to pat them and talk to them. Moms shouldn't need a team of people and permission.
There should be a cure for pre-eclampsia. It's a condition that has been around well.. forever. And the answer is........bedrest? Which clearly just does NOT FUCKING WORK.
NICUs should have beds next to isolettes. And showers. Because moms with babies in the NICU should be able to live there.
Moms should not have to choose between paying their bills (going back to work) and spending time with their babies.
The sight of a pregnant cousin due within a day of a mom shouldn't make them jealous and sad.
None of this should be. And of course, I'm fully aware that life isn't fair and "should be" an "shouldn't be" don't mean diddly squat. But it sucks.
Robbie had an unsettled day. Nothing tragic, he was just cranky. His day nurse said he was only happy on his belly. He'd been cranky on his back and side early in the day. Not unexpected, and sometimes a baby has to do things he doesn't like.
She left at 3, having taken a few hours off to go to a wedding.
When the evening nurse took over, I kangarooed for a couple of hours, but Robbie got really, really hot and had to go back to bed because he wasn't cooling down as quickly as she'd like. He did cool down okay once he was back, though, so it was okay. But still scared me.
After he'd gone back to bed, shediscussed his lengthy ventilator requirements. She used terms like "chronic lung disease" and "respiratory distress." None of this is really decided until Robbie reaches 34 weeks gestation, but with as long as he's been on the vent, it's almost guaranteed. Dr. C already mentioned he'd be coming home on oxygen. I can live with that. Inconvenient- yes, but we'll manage. But thinking of the additional struggles this means for Robbie.. well.. it breaks my heart.
Then his night nurse came. Yep. The one I don't like. When I saw her come in the door, I thought "please don't let her be Robbies." No such luck. My heart sunk.
Another nurse came over to ask how I was doing and about Robbie. As usual, her kindness choked me up. I wasn't crying, but was clearly battling not to when the evening nurse asked her what she'd done to upset me. I explained my whole "don't be nice to me or I'll cry" thing and they looked bewildered. (??) Evening nurse hugged me as she left for the night.
Amazing the differences between all of them and night nurse. I hung out for a while and she seemed to be very attentive to him. I visited my friend who just had her daughter for a while and then headed back down to check on Robbie again.
As I walked in, he was alarming- his heart rate was over 200. This hadn't been a problem all day. His bed said he was hot, but when we took his temperature, it was normal. She even got me a 2nd thermometer to make sure. He was a bit fussy, but not so fussy that I would have expected a heart rate that high, so being hot would have made sense. But it wasn't the case.
I managed to calm him down and get him to sleep and his heart rate slowed a bit, though still higher than I would have expected. I felt sick thinking about leaving. I just don't trust his nurse to pay attention.
She was doing fine, honestly. She even went and got a new isolette because she couldn't figure out why his bed kept saying he was so hot when he wasn't. It was warming in preparation for him when I finally pulled myself away.
She was going to move him when she did his cares at 1am. It's 1:30 now. I figure I'll give her to 2, then call to see how he's doing. I'll give her time to get him moved and settled.
All I REALLY want to do is drive back up there and see for myself.
I just feel sick, really. It's MY job to keep him safe. I should be there. But I have to sleep and shower sometime.
So here I sit. Feeling worried, tired, worried, terrified, and scared. There's your 5.
--Trish
Thursday, June 26, 2008
Rambling
Robbie had a pretty good day.
We didn't end up with the nurse from yesterday (she came by and said she had him for about 5 minutes, but everyone got shifted. There were comments about baby-snatching made to the nurse we ended up with. hehe.) but I also really liked the one we had. She's actually still in training, though in her last week, I think. You'd never know she's new. She was being shadowed by one of the other nurses I really like as well, so double the pleasure for us.
Anyway, there really wasn't much to report today. The bacteria that is growing in his trach aspirate turns out to be the same thing they found last week. While we hate that it's there, the fact that it's the same thing at least means he's being treated appropriately and nothing ELSE is going on, so we'll call that a draw. They started adding protein back to my breast milk today as well. That was pretty much it.
I didn't get to Kangaroo very long today. Between visiting the friend who had her baby early this morning (all is well- 8lb 10oz baby girl. She looks like a giant to me. All this time in the NICU has seriously altered my perception.) and going to David's grandpa's visition, there just wasn't a lot of time. We got about 90 minutes in, though.
The visitation was interesting. You know how it is... it's always like a little family reunion when someone dies. They all wanted to know about Robbie. I had the forethought to bring my IPOD with me which has Robbie pictures on it. Lots of questions. One of David's cousins asked when we'd know if Robbie has been affected long term with any disabilities. That's a big question. I answered honestly- probably 3 years. Developmental delays are fairly likely. It may be as simple as occupational therapy for something like a gross motor delay or as serious as Cerebral Palsy. Could be learning disbilities. Or it could be nothing. We just don't know.
I couldn't guage what she thought of the answer, but I let it lay and pretty much moved on. I knew the question was bound to come up eventually and I thought I'd be bothered by it. Maybe offended, but I wasn't. She didn't seem to be asking in a judgemental way but just genuine curiosity. She was sweet and said she'd been thinking of us and praying. David's family is very nice.
So I suppose that gets that out of the way. The first time it's been asked. And I got through it. Check that off the list.
Of course, David's aunt made me cry. She kept going on and on and about how she just knew this had to be hard on me etc etc.
Why is that? You're all strong and positive and then someone says "I see through that" and you just collapse? Bah!
Anyway, I managed to do okay, though. Just a few tears and then I was able to knock it off.
After the visitation we went back to the hospital so David could visit (fortunately the funeral home is fairly close to the hospital.)
I got to give Robbie a bath! It's more like a sponge bath, but still. I was nervous, but the nurse walked me through it. I didn't have a camera with me- having returned it to my friend yesterday- but the nurse got the NICU camera and took a couple. They printed them for us. David's taking them to work to scan them. I'll post 'em as soon as possible.
We did pretty well, I think. I only pissed him off a little and was able to calm him pretty quickly.
Oh.. and they weighed him! He broke 2 lbs again! Yesterday he was weighing 1lb 15.5 oz- that was w/o his vent tube on. Tonight he had his vent tube on and weight 2lb 1.5oz. Even allowing that half ounce for his vent tube, he's definitely over 2lbs again and since he's not all swollen up with fluid, it's official.
His little girlfriend next to him hit 2lbs yesterday so it's official! I think maybe this weekend we need some cupcakes for the nurses to celebrate. We'll see if I can work up the time and energy to make some.
Anyway, now that I've relieved my bosom of some milk and my mind of random thoughts, it's time to sleep.
The funeral is at 9am. David's a pall bearer, so he has to be there at 8, but I'm driving seperately. The burial will be a military one at Jefferson Barracks and between the driving and such, I'll need to pump immediately after, so I'll just go straight to the hospital while David does the family thing afterward. Plus I get to sleep an extra hour. And I don't even feel the slightest bit guilty about it.
G'night all!
--Trish
P.S. CT scan is set for Monday at 3. Think good brain thoughts for me!
We didn't end up with the nurse from yesterday (she came by and said she had him for about 5 minutes, but everyone got shifted. There were comments about baby-snatching made to the nurse we ended up with. hehe.) but I also really liked the one we had. She's actually still in training, though in her last week, I think. You'd never know she's new. She was being shadowed by one of the other nurses I really like as well, so double the pleasure for us.
Anyway, there really wasn't much to report today. The bacteria that is growing in his trach aspirate turns out to be the same thing they found last week. While we hate that it's there, the fact that it's the same thing at least means he's being treated appropriately and nothing ELSE is going on, so we'll call that a draw. They started adding protein back to my breast milk today as well. That was pretty much it.
I didn't get to Kangaroo very long today. Between visiting the friend who had her baby early this morning (all is well- 8lb 10oz baby girl. She looks like a giant to me. All this time in the NICU has seriously altered my perception.) and going to David's grandpa's visition, there just wasn't a lot of time. We got about 90 minutes in, though.
The visitation was interesting. You know how it is... it's always like a little family reunion when someone dies. They all wanted to know about Robbie. I had the forethought to bring my IPOD with me which has Robbie pictures on it. Lots of questions. One of David's cousins asked when we'd know if Robbie has been affected long term with any disabilities. That's a big question. I answered honestly- probably 3 years. Developmental delays are fairly likely. It may be as simple as occupational therapy for something like a gross motor delay or as serious as Cerebral Palsy. Could be learning disbilities. Or it could be nothing. We just don't know.
I couldn't guage what she thought of the answer, but I let it lay and pretty much moved on. I knew the question was bound to come up eventually and I thought I'd be bothered by it. Maybe offended, but I wasn't. She didn't seem to be asking in a judgemental way but just genuine curiosity. She was sweet and said she'd been thinking of us and praying. David's family is very nice.
So I suppose that gets that out of the way. The first time it's been asked. And I got through it. Check that off the list.
Of course, David's aunt made me cry. She kept going on and on and about how she just knew this had to be hard on me etc etc.
Why is that? You're all strong and positive and then someone says "I see through that" and you just collapse? Bah!
Anyway, I managed to do okay, though. Just a few tears and then I was able to knock it off.
After the visitation we went back to the hospital so David could visit (fortunately the funeral home is fairly close to the hospital.)
I got to give Robbie a bath! It's more like a sponge bath, but still. I was nervous, but the nurse walked me through it. I didn't have a camera with me- having returned it to my friend yesterday- but the nurse got the NICU camera and took a couple. They printed them for us. David's taking them to work to scan them. I'll post 'em as soon as possible.
We did pretty well, I think. I only pissed him off a little and was able to calm him pretty quickly.
Oh.. and they weighed him! He broke 2 lbs again! Yesterday he was weighing 1lb 15.5 oz- that was w/o his vent tube on. Tonight he had his vent tube on and weight 2lb 1.5oz. Even allowing that half ounce for his vent tube, he's definitely over 2lbs again and since he's not all swollen up with fluid, it's official.
His little girlfriend next to him hit 2lbs yesterday so it's official! I think maybe this weekend we need some cupcakes for the nurses to celebrate. We'll see if I can work up the time and energy to make some.
Anyway, now that I've relieved my bosom of some milk and my mind of random thoughts, it's time to sleep.
The funeral is at 9am. David's a pall bearer, so he has to be there at 8, but I'm driving seperately. The burial will be a military one at Jefferson Barracks and between the driving and such, I'll need to pump immediately after, so I'll just go straight to the hospital while David does the family thing afterward. Plus I get to sleep an extra hour. And I don't even feel the slightest bit guilty about it.
G'night all!
--Trish
P.S. CT scan is set for Monday at 3. Think good brain thoughts for me!
Long Day
It's been a LOOOOOONG day.
Robbie had a much better day. He had one of my favorite nurses today. I may have been a little overly emotional today and actually hugged her because I was so appreciative of her. I hope I didn't freak her out. But it was a sincere hug so I don't regret it.
I went to the hospital a little earlier than normal today because one of my closest friends was being induced. She's the one that loaned me her camera when I was panicked about missing Robbie's birth since I was supposed to be knocked out. So I needed to get her camera back to her. She told me not to rush it up there, but I had to.
When I got there and saw who Robbie's nurse was today, it was definitely a good start to the day.
He was resting nicely. Heart rate nice and normal. I said my good mornings, then went to spend some time with my laboring friend. Then back to the NICU to Kangaroo which went wonderfully.
Our nurse filled me in. He was weighed at 1 lb 15 oz. They can't say he really lost another ounce because this was his first time being weighed on the scale vs being weighed on his old bed, so it could just be scale difference. His trach aspirate came back really positive. Now we wait to see if it's the same thing growing as what they found before. I'm disappointed that it was there, but they seem to think it's par for course, so I'm trying not to be discouraged. The tentative plan is to let him grown and strengthen for another week, then think about extubating again. Beyond that- no changes.
After I finished Kangarooing, Robbie was upset. He really does not appreciate the transition from bosom to bed. I can't blame the boy, but it's tough to see him upset. The nurse today spent a good 30 minutes talking to him and soothing him. She REALLY deserved that hug, I'm telling you.
While I was Kangarooing, there was new admission. The baby's dad escorted him in with what can only be called "new nicu dad look." It's an interesting combination of pride & terror. I watched for a little while and when he was standing back while they tried to get an IV in, I congratulated him and offered him a little welcome. He seemed relieved.
Remember how many times I said "overwhelmed" in the first week after Robbie was born? Boy could you see it on his face. He asked a few questions, shared their story (incompetent cervix, 4 months of bedrest, 28 weeks, 2lb 10oz) and when I pulled back the blankets and showed him Robbie (and in hindsight- a good dose of cleavage, but I wasn't thinking of that at the time) he was wowed by how little he was. I think it made him feel better about his little guy.
I was honored because for most of the rest of the day when his family would come in to see the baby, I'd hear him say "And that's Trish & Robbie.. he was 1lb 7oz.." Awww.. so sweet! The new dad to his right also welcomed him a bit. We NICU parents have to stick together.
Actually, come to think of it, I also had another lovely conversation with the parents of the twin boys who were next to Robbie for a while a couple of weeks ago. They were 27 weekers, in the low 2lb range. I had stopped near them while waiting for a newly admitted baby to come through and the dad stuck up a conversation asking how we were. We had done the sort of "hey, how ya doin'..." thing a time or two, but this was our first real introduction. Nice people. Really nice.
Shitty circumstances. Great people.
Anyway, from there I mostly ran back and forth between the NICU and my friend in labor. I finally gave up and left about midnight. 13+ hours at the hospital was officially my limit.
Came home, grabbed a bit to eat, tucked the hubby into bed, am making some milk and then heading to bed.
David's grandpa passed away this morning (it wasn't exactly "expected" but he had been very sick a very long time.) and tomorrow night is the viewing.
I called the doc today about my continuing head numbness, so I'm expecting the call tomorrow about a CT scan. And of course, there will be Robbie visiting (and friend visiting! I'm waiting for the call now that she's finally delivered.) so it's going to be a very long day tomorrow as well.
Definitely need to sleep fast.
For those praying- work on that infection in Robbie's trachea. And think fat baby thoughts. And maybe some non-head-weirdness thoughts for me.
--Trish
Robbie had a much better day. He had one of my favorite nurses today. I may have been a little overly emotional today and actually hugged her because I was so appreciative of her. I hope I didn't freak her out. But it was a sincere hug so I don't regret it.
I went to the hospital a little earlier than normal today because one of my closest friends was being induced. She's the one that loaned me her camera when I was panicked about missing Robbie's birth since I was supposed to be knocked out. So I needed to get her camera back to her. She told me not to rush it up there, but I had to.
When I got there and saw who Robbie's nurse was today, it was definitely a good start to the day.
He was resting nicely. Heart rate nice and normal. I said my good mornings, then went to spend some time with my laboring friend. Then back to the NICU to Kangaroo which went wonderfully.
Our nurse filled me in. He was weighed at 1 lb 15 oz. They can't say he really lost another ounce because this was his first time being weighed on the scale vs being weighed on his old bed, so it could just be scale difference. His trach aspirate came back really positive. Now we wait to see if it's the same thing growing as what they found before. I'm disappointed that it was there, but they seem to think it's par for course, so I'm trying not to be discouraged. The tentative plan is to let him grown and strengthen for another week, then think about extubating again. Beyond that- no changes.
After I finished Kangarooing, Robbie was upset. He really does not appreciate the transition from bosom to bed. I can't blame the boy, but it's tough to see him upset. The nurse today spent a good 30 minutes talking to him and soothing him. She REALLY deserved that hug, I'm telling you.
While I was Kangarooing, there was new admission. The baby's dad escorted him in with what can only be called "new nicu dad look." It's an interesting combination of pride & terror. I watched for a little while and when he was standing back while they tried to get an IV in, I congratulated him and offered him a little welcome. He seemed relieved.
Remember how many times I said "overwhelmed" in the first week after Robbie was born? Boy could you see it on his face. He asked a few questions, shared their story (incompetent cervix, 4 months of bedrest, 28 weeks, 2lb 10oz) and when I pulled back the blankets and showed him Robbie (and in hindsight- a good dose of cleavage, but I wasn't thinking of that at the time) he was wowed by how little he was. I think it made him feel better about his little guy.
I was honored because for most of the rest of the day when his family would come in to see the baby, I'd hear him say "And that's Trish & Robbie.. he was 1lb 7oz.." Awww.. so sweet! The new dad to his right also welcomed him a bit. We NICU parents have to stick together.
Actually, come to think of it, I also had another lovely conversation with the parents of the twin boys who were next to Robbie for a while a couple of weeks ago. They were 27 weekers, in the low 2lb range. I had stopped near them while waiting for a newly admitted baby to come through and the dad stuck up a conversation asking how we were. We had done the sort of "hey, how ya doin'..." thing a time or two, but this was our first real introduction. Nice people. Really nice.
Shitty circumstances. Great people.
Anyway, from there I mostly ran back and forth between the NICU and my friend in labor. I finally gave up and left about midnight. 13+ hours at the hospital was officially my limit.
Came home, grabbed a bit to eat, tucked the hubby into bed, am making some milk and then heading to bed.
David's grandpa passed away this morning (it wasn't exactly "expected" but he had been very sick a very long time.) and tomorrow night is the viewing.
I called the doc today about my continuing head numbness, so I'm expecting the call tomorrow about a CT scan. And of course, there will be Robbie visiting (and friend visiting! I'm waiting for the call now that she's finally delivered.) so it's going to be a very long day tomorrow as well.
Definitely need to sleep fast.
For those praying- work on that infection in Robbie's trachea. And think fat baby thoughts. And maybe some non-head-weirdness thoughts for me.
--Trish
Tuesday, June 24, 2008
Improvement & more pictures
It was an improved day. He was a little agitated, but so much better than yesterday. We Kangarooed for about 3 hours and even then, he was mostly awake. He seemed to be really trying to see what was going on around him. Very alert today. His oxygen needs were way down. He was actually on 21% (room air) most of the day. On his back he'd have to go up a bit- 28 or 30%, but nothing huge.
We talked a bit. When I'd talk to him today he'd calm down more.. his heart rate would lower a bit and he'd chill out. Not that he was terribly upset otherwise, but it was definitely a difference. It made me feel useful, at least.
I think my little Robbie is popular. A couple of nurses stopped me to ask about him today. Not because of yesterday (they hadn't heard) but just wondering how he was doing. One of my favorite nurses and I talked about his back and forth venting and she said there are usually about 3 babies of his gestation that just seem to have trouble coming off the vent. He just has to get bigger and stronger.. and he will. I appreciated her pep talk. Dr. C hasn't been around for 2 days. I was due for a pep talk.
Even the less-than-friendly nurse from last night stopped to ask me how his day went. She also went out of her way to say goodnight to me before I left. I'm not sure if that was sucking up because I went over her head last night or if I maybe reached some sort of humanity in her, but it was appreciated anyway.
Overall, it was a good day. But I felt a little guarded. Yesterday wore on me. I suppose that's probably how Robbie felt today, too. Anyway, I think I aged a few years in those hours. This mommy business is hard work.
But.. onto brighter things..
A couple of pictures!!
After I got extubated. My WHOLE FACE! Pardon my red cheeks. I was a little flustered.
I'm not quite sure I like this new mask they put on me.
Mommy helps calm me down.
My new bed!
--Trish
We talked a bit. When I'd talk to him today he'd calm down more.. his heart rate would lower a bit and he'd chill out. Not that he was terribly upset otherwise, but it was definitely a difference. It made me feel useful, at least.
I think my little Robbie is popular. A couple of nurses stopped me to ask about him today. Not because of yesterday (they hadn't heard) but just wondering how he was doing. One of my favorite nurses and I talked about his back and forth venting and she said there are usually about 3 babies of his gestation that just seem to have trouble coming off the vent. He just has to get bigger and stronger.. and he will. I appreciated her pep talk. Dr. C hasn't been around for 2 days. I was due for a pep talk.
Even the less-than-friendly nurse from last night stopped to ask me how his day went. She also went out of her way to say goodnight to me before I left. I'm not sure if that was sucking up because I went over her head last night or if I maybe reached some sort of humanity in her, but it was appreciated anyway.
Overall, it was a good day. But I felt a little guarded. Yesterday wore on me. I suppose that's probably how Robbie felt today, too. Anyway, I think I aged a few years in those hours. This mommy business is hard work.
But.. onto brighter things..
A couple of pictures!!
After I got extubated. My WHOLE FACE! Pardon my red cheeks. I was a little flustered.
I'm not quite sure I like this new mask they put on me.
Mommy helps calm me down.
My new bed!
--Trish
Reintubated
I started the day with a migraine and from there, it mostly got worse.
I suppose that's not entirely true. Really most of the day went well, but when it went to hell, it went to hell.
After running some errands (car in the shop- thank God it's under warranty) in the morning, I got to the hospital a little after 1:00. Robbie was doing pretty well. He was bundled up and peaceful. His oxygen was in the 40s which was higher than it's been, but not unexpectedly.
After he woke up, we kangarooed for a few hours. It was a little frustrating because the CPAP mask just wouldn't cooperate well. They were constantly fussing with it to get it to blow right. When it's working the way it should, there is a bottle of saline that bubbles. He kept "losing his bubbles."
As I said, I had a migraine and really just wasn't very comfortable. My plan was to hold Robbie a while and then go home early and lay down. Which is what I was trying to do around 5:00.
They moved him to a new bed. His now has a regular isolette instead of the super premium one he needed when he was even tinier. This one is still covered and heated, but it's less fancy and not humidified. Honestly, I don't really like the thing, but they say it's normal for him to move up. I don't think he "graduated" so much as they needed his old bed. I guess the NICU is at full capacity again- 80 babies.
Anyway, as they put him back to bed, I went to pump. I came back with the intention of telling him goodnight and going home. But as I came back in, he was a little fussy. So I sat with him a few minutes trying to calm him. He started to have a couple of decels (where his heart slows down- not enough to make the machine alarm, but enough so I noticed. His heart rate is usually in the 160's and it would slow to 110ish) so I called his nurse over.
Fortunately the nurse who was on during this time is really, really good. I REALLY REALLY like her. She didn't blow me off. She came to watch and he did it again. So she monitor watched with him for a while. Next thing you know he had a brady. That's in and of itself isn't that terrible- it's expected. But he wouldn't rouse. His oxygen saturation dropped into the 30's. She had to bag him. He finally started breathing on his own again.
She called another nurse over to stand with him while she went to get the nurse practitioner. She was afraid he was wearing out.
The 3 minutes she was gone, he had to be roused again. It happened easier, but it was happening. She came back and said that they said they'd watch him closely tonight but he might have to be reintubated by morning.
A few minutes later, he did it again. And then again. She called for someone to watch him again and went to get the NP. This time more insistantly. She came back and they were going to reintubate him.
I was torn between relief and disappointment. On the one hand, I had hoped he didn't need the vent anymore. On the other hand, he very obviously did and watching him bottom out is pure terror.
Fortunately, the intubation went incredibly smoothly. I was standing 10 feet away and I didn't even see it happen. His numbers went up immediately.
They came to talk to me and explained that after wearing out like that, it was likely he'd need more oxygen than normal tonight but that they'd wean him down by morning. Even in the time we were talking, though, his needs were coming down. Honestly, I was calm.
But then they put his CO2 monitor on him. As it read, it his 90. I flipped out. That's WAYYYYYYYY too high. X-ray came to take his chest film to make sure the tube was in the right place.
The c02 monitor results came in only a minute or two before the film. The NP turned his breathing rate up and we all stared at the CO2 monitor. It started to fall a little. WHen they saw his chest Xray, they came in and ratcheted up his airway pressure a while. His lungs were almost white. Damn near collapsed. They needed to inflate them.
They decided to give him 30 minutes for his CO2 to even out and if not, more tests. Fortunately it fell fairly quickly into the 60s- which is what we needed to see.
But his heart rate was high. I mentioned it and they checked. He was very agitated. If I'd hold my hands on him, I could calm him into the 180s, but that's still fairly high for him.
He finally fell asleep and I prepared to leave again. Not relaxed, but at least feeling that he was stable. I went to pump again. When I came back, they'd moved him to a new spot in the NICU, and did his cares, repositioning him. He was agitated again.
His heart rate was up around 200 again. I tried to calm him. This time, it didn't work. I called his nurse over. She dismissed me saying that he was agitated, had a long day etc etc. I scowled, but went back to trying to calm him. A couple of minutes later, his vent alarmed. They asked if he was breathing fast. Yes.
The vent needed to be recalibrated.. finally he calmed down a bit. But still, he heart rate was around 190. Better than 200, but still high. I fumed because I had been dismissed when I was clearly right.
Then he got really, really agitated again. Just screaming. You can't hear him, of course, but you can see him. He was inconsolable. None of my tricks were working. I didn't even want to talk to his nurse again, afraid she'd ignore me AGAIN.
Finally I asked one of the other nurses to call for the NP again. The one assigned to us was at a delivery, but one of covering NPs came. She listened to what I said and acknowledged that I was there a lot and knew my kid. She'd get his file and see what we could figure out.
So we went through it together. She agreed that his normal heart rate is usually lower. It had crept up towards 200 again and was normally in the 160s. His usual remarks were that he was calm or resting or awake and alert, but the last few hours, he'd been noted as agitated. Hmm. I guess I'm NOT nuts.
Finally she decided that it was possible he was in pain. They had restarted the fortifiers in his milk yesterday, though very slowly, but you never know. he'd been reintubated, of course. We didn't know. She called the doctor on call. They agreed to try to give him some fentanyl.
About 10 minutes after they gave that to him, his heart rate slowed ino the 180s and stayed there. He stopped screaming. He was still fussy and wouldn't settle down, but he was markedly improved.
His nurse suddenly was paying a LOT of attention to us. She repositioned him a bit and then sat and watched. I suggested wrapping him and his snuggli in a warm blanket (we couldn't do it earlier because he'd gotten fairly warm) and she brought me one. I tucked him in and he FINALLY went to sleep.
My NP had returned from the delivery. She came to talk as well. And the covering NP was in as well. The two of them, his nurse and I sat and watched him a while. His heart rate was still around 180 which is high for sleeping, but I hoped that once he got some rest, that would return to normal.
I finally felt like I could go home. It was nearly midnight.
The covering NP was concerned about me driving home so late and so tired. She asked me to call when I got home and I agreed.
When I got home- around 12:45 am- I called and asked how he was doing. Still sleeping. I was home safe.
I collapsed. I had intended to tell David good night and then get up to pump again. I woke up 6 hours later. The first thing I did was call to check on Robbie. Heart rate is in the 160s and and he's been mostly sleeping all night. He's on room air. (21%) Relief.
The 2nd thing I did was pump. Somewhere close to 5 oz out of each breast. Considering I normally pump closer to 2, you can imagine MORE RELIEF.
It was a long day. But it's over. Here's hoping today is a better one.
--Trish
P.S. I went to add that while I do not like the nurse he had last night, everyone else all day was wonderful. After he was reintubated, the NP who was on then came to talk to me several times even hugging me before she left. The nurse who caught him giving him stayed an hour past the end of her shift to get him taken care of. The two NPs who sat and watched him with us gave me quite a pep talk about being a good mom and doing really well with him. I love most of the people in the NICU. And I think I made my point quite clearly to his nurse last night. Since I called for the NP, she's been VERY. VERY. attentive. And almost pleasant. If I ever feel like I've been dismissed again, though, I will be making a formal complaint.
I don't have a reputation as a bitch for nothing.
I suppose that's not entirely true. Really most of the day went well, but when it went to hell, it went to hell.
After running some errands (car in the shop- thank God it's under warranty) in the morning, I got to the hospital a little after 1:00. Robbie was doing pretty well. He was bundled up and peaceful. His oxygen was in the 40s which was higher than it's been, but not unexpectedly.
After he woke up, we kangarooed for a few hours. It was a little frustrating because the CPAP mask just wouldn't cooperate well. They were constantly fussing with it to get it to blow right. When it's working the way it should, there is a bottle of saline that bubbles. He kept "losing his bubbles."
As I said, I had a migraine and really just wasn't very comfortable. My plan was to hold Robbie a while and then go home early and lay down. Which is what I was trying to do around 5:00.
They moved him to a new bed. His now has a regular isolette instead of the super premium one he needed when he was even tinier. This one is still covered and heated, but it's less fancy and not humidified. Honestly, I don't really like the thing, but they say it's normal for him to move up. I don't think he "graduated" so much as they needed his old bed. I guess the NICU is at full capacity again- 80 babies.
Anyway, as they put him back to bed, I went to pump. I came back with the intention of telling him goodnight and going home. But as I came back in, he was a little fussy. So I sat with him a few minutes trying to calm him. He started to have a couple of decels (where his heart slows down- not enough to make the machine alarm, but enough so I noticed. His heart rate is usually in the 160's and it would slow to 110ish) so I called his nurse over.
Fortunately the nurse who was on during this time is really, really good. I REALLY REALLY like her. She didn't blow me off. She came to watch and he did it again. So she monitor watched with him for a while. Next thing you know he had a brady. That's in and of itself isn't that terrible- it's expected. But he wouldn't rouse. His oxygen saturation dropped into the 30's. She had to bag him. He finally started breathing on his own again.
She called another nurse over to stand with him while she went to get the nurse practitioner. She was afraid he was wearing out.
The 3 minutes she was gone, he had to be roused again. It happened easier, but it was happening. She came back and said that they said they'd watch him closely tonight but he might have to be reintubated by morning.
A few minutes later, he did it again. And then again. She called for someone to watch him again and went to get the NP. This time more insistantly. She came back and they were going to reintubate him.
I was torn between relief and disappointment. On the one hand, I had hoped he didn't need the vent anymore. On the other hand, he very obviously did and watching him bottom out is pure terror.
Fortunately, the intubation went incredibly smoothly. I was standing 10 feet away and I didn't even see it happen. His numbers went up immediately.
They came to talk to me and explained that after wearing out like that, it was likely he'd need more oxygen than normal tonight but that they'd wean him down by morning. Even in the time we were talking, though, his needs were coming down. Honestly, I was calm.
But then they put his CO2 monitor on him. As it read, it his 90. I flipped out. That's WAYYYYYYYY too high. X-ray came to take his chest film to make sure the tube was in the right place.
The c02 monitor results came in only a minute or two before the film. The NP turned his breathing rate up and we all stared at the CO2 monitor. It started to fall a little. WHen they saw his chest Xray, they came in and ratcheted up his airway pressure a while. His lungs were almost white. Damn near collapsed. They needed to inflate them.
They decided to give him 30 minutes for his CO2 to even out and if not, more tests. Fortunately it fell fairly quickly into the 60s- which is what we needed to see.
But his heart rate was high. I mentioned it and they checked. He was very agitated. If I'd hold my hands on him, I could calm him into the 180s, but that's still fairly high for him.
He finally fell asleep and I prepared to leave again. Not relaxed, but at least feeling that he was stable. I went to pump again. When I came back, they'd moved him to a new spot in the NICU, and did his cares, repositioning him. He was agitated again.
His heart rate was up around 200 again. I tried to calm him. This time, it didn't work. I called his nurse over. She dismissed me saying that he was agitated, had a long day etc etc. I scowled, but went back to trying to calm him. A couple of minutes later, his vent alarmed. They asked if he was breathing fast. Yes.
The vent needed to be recalibrated.. finally he calmed down a bit. But still, he heart rate was around 190. Better than 200, but still high. I fumed because I had been dismissed when I was clearly right.
Then he got really, really agitated again. Just screaming. You can't hear him, of course, but you can see him. He was inconsolable. None of my tricks were working. I didn't even want to talk to his nurse again, afraid she'd ignore me AGAIN.
Finally I asked one of the other nurses to call for the NP again. The one assigned to us was at a delivery, but one of covering NPs came. She listened to what I said and acknowledged that I was there a lot and knew my kid. She'd get his file and see what we could figure out.
So we went through it together. She agreed that his normal heart rate is usually lower. It had crept up towards 200 again and was normally in the 160s. His usual remarks were that he was calm or resting or awake and alert, but the last few hours, he'd been noted as agitated. Hmm. I guess I'm NOT nuts.
Finally she decided that it was possible he was in pain. They had restarted the fortifiers in his milk yesterday, though very slowly, but you never know. he'd been reintubated, of course. We didn't know. She called the doctor on call. They agreed to try to give him some fentanyl.
About 10 minutes after they gave that to him, his heart rate slowed ino the 180s and stayed there. He stopped screaming. He was still fussy and wouldn't settle down, but he was markedly improved.
His nurse suddenly was paying a LOT of attention to us. She repositioned him a bit and then sat and watched. I suggested wrapping him and his snuggli in a warm blanket (we couldn't do it earlier because he'd gotten fairly warm) and she brought me one. I tucked him in and he FINALLY went to sleep.
My NP had returned from the delivery. She came to talk as well. And the covering NP was in as well. The two of them, his nurse and I sat and watched him a while. His heart rate was still around 180 which is high for sleeping, but I hoped that once he got some rest, that would return to normal.
I finally felt like I could go home. It was nearly midnight.
The covering NP was concerned about me driving home so late and so tired. She asked me to call when I got home and I agreed.
When I got home- around 12:45 am- I called and asked how he was doing. Still sleeping. I was home safe.
I collapsed. I had intended to tell David good night and then get up to pump again. I woke up 6 hours later. The first thing I did was call to check on Robbie. Heart rate is in the 160s and and he's been mostly sleeping all night. He's on room air. (21%) Relief.
The 2nd thing I did was pump. Somewhere close to 5 oz out of each breast. Considering I normally pump closer to 2, you can imagine MORE RELIEF.
It was a long day. But it's over. Here's hoping today is a better one.
--Trish
P.S. I went to add that while I do not like the nurse he had last night, everyone else all day was wonderful. After he was reintubated, the NP who was on then came to talk to me several times even hugging me before she left. The nurse who caught him giving him stayed an hour past the end of her shift to get him taken care of. The two NPs who sat and watched him with us gave me quite a pep talk about being a good mom and doing really well with him. I love most of the people in the NICU. And I think I made my point quite clearly to his nurse last night. Since I called for the NP, she's been VERY. VERY. attentive. And almost pleasant. If I ever feel like I've been dismissed again, though, I will be making a formal complaint.
I don't have a reputation as a bitch for nothing.
Sunday, June 22, 2008
Extubated!
Off the vent!!
Yes indeed, Robbie is the proud new owner of a CPAP mask which he hates with all his passion.
We got to the hospital today and his nurse said that after rounds were done, they were extubating.
I went off to pump around 3 and when I got back, the respiratory team was there preparing to do the deed.
Robbie did not enjoy the process at all. First of all, the bar that held his vent in place was like crazy glued to his face. They have some stuff to ease the glue up but it was still horrible to get off. Then they kept moving his feeding tube (up his nose) and he had the funniest, craziest sneezing fit. He must have sneezed 6 times. Finally they just took it out because they were pulling on it anyway, so it probably wouldn't have been in the right place, and it was driving me crazy.
But the real horror came with the CPAP mask. This happens to be the one that has prongs up the nose. HE HATES IT. I mean, HATES it. He pulled it out of his nose within 5 minutes of the resp techs leaving. He wouldn't settle down at all. I spent a good 2 hours with my hands on him. The ONLY way he would settle down is with my hands on his. I didn't even have to let go to upset him again- just lessening the pressure holding him would do it. He'd kick one leg and get his arms going like a little windmill. That causes to main problems. 1) He would pull his prongs out. 2) All that moving around uses up all his oxygen. His nurse pretty much spent the afternoon parked next to him. I lost all feeling in my hands trying to soothe him.
Finally, David and I decided we were going to go down to the cafe for dinner. No sooner than I stood up, he wiggled out of his heart rate sensor and scared the shit out of me and his nurse. She had went down the hall to get some meds. When his monitor starting screaming that his heart rate was zero, another nurse came trotting over very quickly to assure me he was okay. Fortunately I have learned to read the monitors well enough to know he was fine (after the 3 second freak out) but his nurse came running down the hallway to check him. Way to get some attention, kiddo.
Finally, we headed to dinner. We came back a short time later and the nurse was trying to soothe him again. As I suspected, he was PISSED again. Heart rate up and everything. Mad as hell!
I soothed him for a bit and finally his nurse came over with a warm blanket. We couldn't really swaddle him because of the CO2 monitor he was wearing, but with the warm blanket wrapped around his snuggli, I think we fooled him into thinking it was my hands. FINALLY he slept. No kidding, he fussed for 3 hours. You wouldn't think a baby as little as him would have 3 hours worth of energy.
Anyway, from there, she was able to start weaning his oxygen down. He did quite well.
We just wait and see. Dr. C says he hopes this will be "the end of his relationship with the vent" but it's always possible he could have to go back on it. Could be tomorrow, could be in a couple of weeks, could be forever. It's up to Robbie.
But this is a positive step.
It's especially good because one of his cultures came back positive today. Yes, he has his first official infection. His trach aspirate was growing a small amount of bacteria. The good news is that it wasn't in his blood yet and he's already on the antibiotics so it was caught very early.
Dr. C isn't really convinced that was affecting his CBC, but it's better to be cautious for sure. And the fact that the tube is out is better. It's hard to fight the infection when the thing growing the bacteria is still in there.
Overall, it was a good day. I expected to be more upset about the infection, but I think the fact that I know it was caught super early and was mild is helping. And it's exciting to have him off the tube- even if Robbie doesn't know it yet.
We didn't get to Kangaroo today because of all the uproar, but I understood. As much time as I spent with my hands on him, it was practically a Kangaroo. And tomorrow, we hope he'll be settled down and get to give it a real go.
Keep praying.. we need infections cured and for Robbie to tolerate the CPAP well and stay strong to breathe for himself.
More pictures coming soon!
--Trish
Yes indeed, Robbie is the proud new owner of a CPAP mask which he hates with all his passion.
We got to the hospital today and his nurse said that after rounds were done, they were extubating.
I went off to pump around 3 and when I got back, the respiratory team was there preparing to do the deed.
Robbie did not enjoy the process at all. First of all, the bar that held his vent in place was like crazy glued to his face. They have some stuff to ease the glue up but it was still horrible to get off. Then they kept moving his feeding tube (up his nose) and he had the funniest, craziest sneezing fit. He must have sneezed 6 times. Finally they just took it out because they were pulling on it anyway, so it probably wouldn't have been in the right place, and it was driving me crazy.
But the real horror came with the CPAP mask. This happens to be the one that has prongs up the nose. HE HATES IT. I mean, HATES it. He pulled it out of his nose within 5 minutes of the resp techs leaving. He wouldn't settle down at all. I spent a good 2 hours with my hands on him. The ONLY way he would settle down is with my hands on his. I didn't even have to let go to upset him again- just lessening the pressure holding him would do it. He'd kick one leg and get his arms going like a little windmill. That causes to main problems. 1) He would pull his prongs out. 2) All that moving around uses up all his oxygen. His nurse pretty much spent the afternoon parked next to him. I lost all feeling in my hands trying to soothe him.
Finally, David and I decided we were going to go down to the cafe for dinner. No sooner than I stood up, he wiggled out of his heart rate sensor and scared the shit out of me and his nurse. She had went down the hall to get some meds. When his monitor starting screaming that his heart rate was zero, another nurse came trotting over very quickly to assure me he was okay. Fortunately I have learned to read the monitors well enough to know he was fine (after the 3 second freak out) but his nurse came running down the hallway to check him. Way to get some attention, kiddo.
Finally, we headed to dinner. We came back a short time later and the nurse was trying to soothe him again. As I suspected, he was PISSED again. Heart rate up and everything. Mad as hell!
I soothed him for a bit and finally his nurse came over with a warm blanket. We couldn't really swaddle him because of the CO2 monitor he was wearing, but with the warm blanket wrapped around his snuggli, I think we fooled him into thinking it was my hands. FINALLY he slept. No kidding, he fussed for 3 hours. You wouldn't think a baby as little as him would have 3 hours worth of energy.
Anyway, from there, she was able to start weaning his oxygen down. He did quite well.
We just wait and see. Dr. C says he hopes this will be "the end of his relationship with the vent" but it's always possible he could have to go back on it. Could be tomorrow, could be in a couple of weeks, could be forever. It's up to Robbie.
But this is a positive step.
It's especially good because one of his cultures came back positive today. Yes, he has his first official infection. His trach aspirate was growing a small amount of bacteria. The good news is that it wasn't in his blood yet and he's already on the antibiotics so it was caught very early.
Dr. C isn't really convinced that was affecting his CBC, but it's better to be cautious for sure. And the fact that the tube is out is better. It's hard to fight the infection when the thing growing the bacteria is still in there.
Overall, it was a good day. I expected to be more upset about the infection, but I think the fact that I know it was caught super early and was mild is helping. And it's exciting to have him off the tube- even if Robbie doesn't know it yet.
We didn't get to Kangaroo today because of all the uproar, but I understood. As much time as I spent with my hands on him, it was practically a Kangaroo. And tomorrow, we hope he'll be settled down and get to give it a real go.
Keep praying.. we need infections cured and for Robbie to tolerate the CPAP well and stay strong to breathe for himself.
More pictures coming soon!
--Trish
3 weeks old
Pictures!
We're going to call this his 3 week picture. It's actually more like a 2 9/10 week picture but since he got SO fussy when he went back to bed yesterday, I didn't want to upset him even more with pictures. Since this one was taken around 8pm Friday night, I think it's close enough.
Two from Father's Day last week:
From the week:
We're going to call this his 3 week picture. It's actually more like a 2 9/10 week picture but since he got SO fussy when he went back to bed yesterday, I didn't want to upset him even more with pictures. Since this one was taken around 8pm Friday night, I think it's close enough.
Two from Father's Day last week:
From the week:
Saturday, June 21, 2008
back up again
Well, there's been no more blood. The cultures they took are so far negative (they grow for several days, but they get a daily report. A negative is good for now, but it's still a wait-and-see.) and he's been behaving well.
They've still got him on straight breastmilk, which he's digesting like a champ.
His lungs are doing quite well.
They lowered his rate again (to 30 for anyone who knows what that means) and after another check tonight, they're hoping to lower it again (to 25.)
While he was Kangarooing tonight, we had his oxygen was down to 22 for a while. For the record- room air is 21, so that was very low. He mostly sat around 25 today (still quite low) and is on 25 again tonight. We did have to go up to around 35 after we put him back to bed.
He did NOT appreciate being taken from his momma tonight at ALL. He got really angry and wouldn't settle down. I felt bed. I only held him for 2 1/2 hours. The recliner I was in tonight was really hard and my butt had been aching REALLY bad for well over an hour and I finally just couldn't sit still anymore. Moving around a lot isn't recommended with a baby on a ventilator.
But there's a chance he may come off the vent tomorrow. If things progress as they hope tonight, tomorrow is the day. Apparently when they lowered his pressure today he got really fussy for a little while, but he recovered on his own. So if they lower his pressure again and he does the same, it may take until Monday to wean him down. But we're on the way, at least.
The only caveat today was that when we did get him back to bed, I went to pump and came back to help with his cares and his temp was low. It should be 97.7 or above and it was only 96.7. That's pretty cold.
I just called to check and he's back up to normal, but still. I don't know if he got cold with me (though he felt warm) or if he got cold going back to bed. Guess I'll go back to my paranoia of having his temp taken every half hour while he's out. I just hope this doesn't cause more cold stress.
We were only at the hospital for 4 hours today. We took the day to get stuff done. David worked on the lawn mower and did some chores. I did housework/laundry etc. Things that needed to be done. But it felt awful only spending 4 hours at the hospital. I keep thinking about if I go back to work while Robbie is in the hospital- I'll be working 8 hours (part time is not an option at my job) and then going to see Robbie. So 4 hours is probably all I'd be able to manage 5 days a week. It breaks my heart to think about.
The only part of the day that feels "right" is the time spent at the hospital. Most moms get to spend their maternity leave in the house with their babies. I have to call and see if he's still okay. It sucks.
Anyway, enough of my pity party. It was a better day, and I need to focus on that. I just miss my little guy. I was crying before we even got out of the hallway to the NICU. But tomorrow is another day. I'll spend more time, then.
God help the kid when he comes home. He'll never get a moment's peace.
--Trish
They've still got him on straight breastmilk, which he's digesting like a champ.
His lungs are doing quite well.
They lowered his rate again (to 30 for anyone who knows what that means) and after another check tonight, they're hoping to lower it again (to 25.)
While he was Kangarooing tonight, we had his oxygen was down to 22 for a while. For the record- room air is 21, so that was very low. He mostly sat around 25 today (still quite low) and is on 25 again tonight. We did have to go up to around 35 after we put him back to bed.
He did NOT appreciate being taken from his momma tonight at ALL. He got really angry and wouldn't settle down. I felt bed. I only held him for 2 1/2 hours. The recliner I was in tonight was really hard and my butt had been aching REALLY bad for well over an hour and I finally just couldn't sit still anymore. Moving around a lot isn't recommended with a baby on a ventilator.
But there's a chance he may come off the vent tomorrow. If things progress as they hope tonight, tomorrow is the day. Apparently when they lowered his pressure today he got really fussy for a little while, but he recovered on his own. So if they lower his pressure again and he does the same, it may take until Monday to wean him down. But we're on the way, at least.
The only caveat today was that when we did get him back to bed, I went to pump and came back to help with his cares and his temp was low. It should be 97.7 or above and it was only 96.7. That's pretty cold.
I just called to check and he's back up to normal, but still. I don't know if he got cold with me (though he felt warm) or if he got cold going back to bed. Guess I'll go back to my paranoia of having his temp taken every half hour while he's out. I just hope this doesn't cause more cold stress.
We were only at the hospital for 4 hours today. We took the day to get stuff done. David worked on the lawn mower and did some chores. I did housework/laundry etc. Things that needed to be done. But it felt awful only spending 4 hours at the hospital. I keep thinking about if I go back to work while Robbie is in the hospital- I'll be working 8 hours (part time is not an option at my job) and then going to see Robbie. So 4 hours is probably all I'd be able to manage 5 days a week. It breaks my heart to think about.
The only part of the day that feels "right" is the time spent at the hospital. Most moms get to spend their maternity leave in the house with their babies. I have to call and see if he's still okay. It sucks.
Anyway, enough of my pity party. It was a better day, and I need to focus on that. I just miss my little guy. I was crying before we even got out of the hallway to the NICU. But tomorrow is another day. I'll spend more time, then.
God help the kid when he comes home. He'll never get a moment's peace.
--Trish
Plummet
And the roller coaster plummets again.
On Fridays my dad takes me to the hospital. He's off on Fridays so rather than both of us drive up there, we go together. Yesterday, we started the morning shopping for a freezer (I'm officially being attacked by bottles of breastmilk every time I open my freezer door now.) and had lunch.
Dad bought me a freezer. Yay Dad!
We headed up to the hospital arriving about 1 o'clock. When I came in, they had his isolette lid open and when I looked at the nurse questioningly, she opened his diaper and said, "See the blood?"
She looked concerned. My heart stopped. I couldn't do much except look around for answers. The nurse practioner was there and said she'd already called for an X-Ray. I welled up with tears. What do I do?
The NP pretty much said to hold on until we had some answers.
The nurse took another blood sugar since that's often a sign of something going on. His morning sugar has been 86- fine. This time it was 147. Much higher. My stomach churned. Please don't let this be happening.
After what seemed like an eternity (about a half an hour- they apologized for the delay), X-ray came and got a film. It was normal. Everyone assured me that was VERY good news.
In the midst of this, a huge storm rolled through and the power went out. It was only out for about 30 seconds in the NICU (back up generator, of course) but it was just one more point of insanity in the chaos.
Oh- and a baby on the other end of Robbie's row extubated himself, so there was a lot of commotion going on as well.
As for Robbie, they had stopped his feedings and were basically waiting for more tests.
He's retaining a lot of water. His poor little legs are swollen and red, but they already gave him Lasix a few days ago and no one seems concerned. Apparently this isn't uncommon after getting a blood transfusion which he recently did.
They decided that they would change his feedings from fortified breastmilk to plain and asked me to go pump some fresh stuff. Off I went.
I got to the pumping room and got set up and the power went off again. The plug for the pump isn't on the backup generator. So I waited. Maybe 15 minutes later, it came back on and I made a fresh batch and delivered it.
While I had been gone, they had done a CBC.
We waited for results. The nurse was concerned that the power outages had affected the lab computers and they wouldn't get them up right away.
I wrung my hands.
What was probably a short time later, but felt like yet another eternity, it was back- normal.
They were still waiting on the more detailed results, but so far the tests looked okay.
My dad asked if he should "go talk to someone" about the results taking so long. I think it would have made him feel better to go beat the crap out of someone. I understand the sentiment.
The nurse checked his diaper again- no more blood.
The NP said that because the blood was bright red and not mixed in with the stool that it's quite likely that his rectum is irritated. It could be a small fissure. He poops at pretty much every diaper change (a small amount) and it could be irritating his rectum.
I wish I could say that reassured me.
They restarted his feedings with the breastmilk and got him settled for a while.
Around 5, they decided we could Kangaroo.
Shortly after they got him into my arms, Dr. C pulled up a chair to chat.
He said that his CBC was almost exactly the same as it had been on Wednesday. (They had done a work up that day before they started steroids.) One of the more detailed components, though, was ever-so-slightly askew. They were going to go ahead and start antibiotics just to be safe. And of course, they ordered all the cultures to see what they found.
In much better news, his lungs are greatly improved. His O2 needs have been mostly in the upper 20 percents and they lowered his rate as well. And were considering lowering the rate again. Dr. C says we may extubate this weekend. He's very pleased with his lung progress.
As they say- 1 step forward, 2 steps back. Sometimes it feels more like 200 steps back.
Dr. C told me that he wished I'd been at the hospital early in the morning. A 25 weeker graduate had stopped by. He's been home for a few months now and doing very well. He tells me that he had "far more problems than this little guy (pointing to Robbie) ever had." I guess he had an abdominal tear and had to have heart surgery. I told Dr. C he was a good counselor.
I held Robbie for about 3 1/2 hours. He was a happy baby. His plain breast milk feedings went well. Nothing left and just before we left for the night he'd had a big poop. There was a spot of dark brown that the nurse wasn't sure if was dried blood or not. The NP looked and said she didn't think so.
His blood sugar was back down into the 80s.
I talked to his nurse this morning around 5 and she said he was having a good night. Oxygen at 28%, hadn't been higher than 30% through the night. Sleeping peacefully, no more blood.
Right now- we wait. All the people who are smarter than me seem encouraged. I'm trying to trust that they know what they're doing.
I just keep praying. I hope you'll join me.
--Trish
On Fridays my dad takes me to the hospital. He's off on Fridays so rather than both of us drive up there, we go together. Yesterday, we started the morning shopping for a freezer (I'm officially being attacked by bottles of breastmilk every time I open my freezer door now.) and had lunch.
Dad bought me a freezer. Yay Dad!
We headed up to the hospital arriving about 1 o'clock. When I came in, they had his isolette lid open and when I looked at the nurse questioningly, she opened his diaper and said, "See the blood?"
She looked concerned. My heart stopped. I couldn't do much except look around for answers. The nurse practioner was there and said she'd already called for an X-Ray. I welled up with tears. What do I do?
The NP pretty much said to hold on until we had some answers.
The nurse took another blood sugar since that's often a sign of something going on. His morning sugar has been 86- fine. This time it was 147. Much higher. My stomach churned. Please don't let this be happening.
After what seemed like an eternity (about a half an hour- they apologized for the delay), X-ray came and got a film. It was normal. Everyone assured me that was VERY good news.
In the midst of this, a huge storm rolled through and the power went out. It was only out for about 30 seconds in the NICU (back up generator, of course) but it was just one more point of insanity in the chaos.
Oh- and a baby on the other end of Robbie's row extubated himself, so there was a lot of commotion going on as well.
As for Robbie, they had stopped his feedings and were basically waiting for more tests.
He's retaining a lot of water. His poor little legs are swollen and red, but they already gave him Lasix a few days ago and no one seems concerned. Apparently this isn't uncommon after getting a blood transfusion which he recently did.
They decided that they would change his feedings from fortified breastmilk to plain and asked me to go pump some fresh stuff. Off I went.
I got to the pumping room and got set up and the power went off again. The plug for the pump isn't on the backup generator. So I waited. Maybe 15 minutes later, it came back on and I made a fresh batch and delivered it.
While I had been gone, they had done a CBC.
We waited for results. The nurse was concerned that the power outages had affected the lab computers and they wouldn't get them up right away.
I wrung my hands.
What was probably a short time later, but felt like yet another eternity, it was back- normal.
They were still waiting on the more detailed results, but so far the tests looked okay.
My dad asked if he should "go talk to someone" about the results taking so long. I think it would have made him feel better to go beat the crap out of someone. I understand the sentiment.
The nurse checked his diaper again- no more blood.
The NP said that because the blood was bright red and not mixed in with the stool that it's quite likely that his rectum is irritated. It could be a small fissure. He poops at pretty much every diaper change (a small amount) and it could be irritating his rectum.
I wish I could say that reassured me.
They restarted his feedings with the breastmilk and got him settled for a while.
Around 5, they decided we could Kangaroo.
Shortly after they got him into my arms, Dr. C pulled up a chair to chat.
He said that his CBC was almost exactly the same as it had been on Wednesday. (They had done a work up that day before they started steroids.) One of the more detailed components, though, was ever-so-slightly askew. They were going to go ahead and start antibiotics just to be safe. And of course, they ordered all the cultures to see what they found.
In much better news, his lungs are greatly improved. His O2 needs have been mostly in the upper 20 percents and they lowered his rate as well. And were considering lowering the rate again. Dr. C says we may extubate this weekend. He's very pleased with his lung progress.
As they say- 1 step forward, 2 steps back. Sometimes it feels more like 200 steps back.
Dr. C told me that he wished I'd been at the hospital early in the morning. A 25 weeker graduate had stopped by. He's been home for a few months now and doing very well. He tells me that he had "far more problems than this little guy (pointing to Robbie) ever had." I guess he had an abdominal tear and had to have heart surgery. I told Dr. C he was a good counselor.
I held Robbie for about 3 1/2 hours. He was a happy baby. His plain breast milk feedings went well. Nothing left and just before we left for the night he'd had a big poop. There was a spot of dark brown that the nurse wasn't sure if was dried blood or not. The NP looked and said she didn't think so.
His blood sugar was back down into the 80s.
I talked to his nurse this morning around 5 and she said he was having a good night. Oxygen at 28%, hadn't been higher than 30% through the night. Sleeping peacefully, no more blood.
Right now- we wait. All the people who are smarter than me seem encouraged. I'm trying to trust that they know what they're doing.
I just keep praying. I hope you'll join me.
--Trish
Thursday, June 19, 2008
Busy day
This has been a busy day.
Yesterday I called the doctor to say that yes, my head is still numb. (Not my whole head, but the section of it that was still is.)
They tell me to come today at 9:15. Now, I didn't REALLY think this was necessary because we've established this is a normal side effect of the BP med that I was on, but they tell me to come, I come. Good thing I really like my doctor.
So, I go in. She asked if my head was still numb. Yes- but I explain about the Labetilol. She shakes her head. She doesn't like that explanation. She says "You're not ON the med anymore." Hmmph. Not the answer I was expecting. So she says if I'm still numb in another week I'm to call and she'll have it in my chart for them to send me for a CT scan.
The idea of a look at my brain is both fascinating & terrifying. Like.. maybe I don't want to know. Not my usual style, but these days.. well.. maybe denial has its place.
Anyway, then I mention that I've had some pain in my left leg. I'm pretty sure it's just a sore muscle. She is not amused. Now, I have a tendency to hypochondria anyway. But usually I just don't mention my paranoia and it's fine. But I really think I'm suffering a bit of PTSD and I think it's heightened it. So I really expected her to poke at my leg and declare me fine. No swelling or anything.
She asked me how long it had hurt. "About a week."
She said "And you're just NOW mentioning it?" She shakes her head like I must be insane.
Hmm. Okay.
She gets some papers and says I should have an u/s right away. Probably tomorrow.
Okee dokee. Sure glad I have health insurance.
So I leave and head to the hospital to see Robbie. Before I can get there (and it's a short drive) the heart place calls to set up my u/s. They wanted to see me today. 3:10.
Uh. Okay.
I get the hospital and meet a friend who had some things to give me. (Thanks Alyssa! She was getting rid of some mostly-unused baby items and gave me a chance at them before she donated them. I'm all about free stuff!) She came up to see Robbie.
Robbie was having a good morning. His O2 needs were down to 35% (from 60% yesterday) and he was sleeping quite well. He did freak me out a little with a heart rate that kept dropping a little bit (not enough to qualify as a Brady, but enough so I noticed) but he was doing well.
After seeing my friend off and dumping another load of boob juice, I was able to Kangaroo him for an hour and a half. God I love that kid. He did well- no extubation and his heart & O2 were fantastic.
He was having some PGA (where he doesn't digest all of his feedings) but as of this evening, he'd had a glycerin enema (they said he was poopy at each changing, but just a little. Apparently he had a LOT more in there) and since then has been digesting better.
Anyway, much to my chagrin, I had to put him back to bed and head to my u/s.
Of course, the U/S couldn't have been at Robbie's hospital, so I had to drive across town again.
I do not have a blood clot.
I do, however, have u/s lube in my underwear. Seriously, they check it from groin to ankle. I peed before I left the office and literally and literally had to clean the lube from my underwear. And that is not NEARLY as fun or dirty as it sounds.
From there, I headed home. It hurt me to head east (home) instead of west (hospital.) But we needed some groceries. The cats were a day from being starving. And they outnumber us.
The hubby was going to visit Robbie after work, so I sucked it up and went home.
I've now managed to stock the fridge, pick up the house and do some laundry. Call me wonder woman.
It's weird how strange it feels to do "chores" now. who gives a shit about rust stained sinks when my son is in the hospital? But they have progressed to a state that I can't ignore for long. I'll get to those later.
What a weird normal this is.
--Trish
Yesterday I called the doctor to say that yes, my head is still numb. (Not my whole head, but the section of it that was still is.)
They tell me to come today at 9:15. Now, I didn't REALLY think this was necessary because we've established this is a normal side effect of the BP med that I was on, but they tell me to come, I come. Good thing I really like my doctor.
So, I go in. She asked if my head was still numb. Yes- but I explain about the Labetilol. She shakes her head. She doesn't like that explanation. She says "You're not ON the med anymore." Hmmph. Not the answer I was expecting. So she says if I'm still numb in another week I'm to call and she'll have it in my chart for them to send me for a CT scan.
The idea of a look at my brain is both fascinating & terrifying. Like.. maybe I don't want to know. Not my usual style, but these days.. well.. maybe denial has its place.
Anyway, then I mention that I've had some pain in my left leg. I'm pretty sure it's just a sore muscle. She is not amused. Now, I have a tendency to hypochondria anyway. But usually I just don't mention my paranoia and it's fine. But I really think I'm suffering a bit of PTSD and I think it's heightened it. So I really expected her to poke at my leg and declare me fine. No swelling or anything.
She asked me how long it had hurt. "About a week."
She said "And you're just NOW mentioning it?" She shakes her head like I must be insane.
Hmm. Okay.
She gets some papers and says I should have an u/s right away. Probably tomorrow.
Okee dokee. Sure glad I have health insurance.
So I leave and head to the hospital to see Robbie. Before I can get there (and it's a short drive) the heart place calls to set up my u/s. They wanted to see me today. 3:10.
Uh. Okay.
I get the hospital and meet a friend who had some things to give me. (Thanks Alyssa! She was getting rid of some mostly-unused baby items and gave me a chance at them before she donated them. I'm all about free stuff!) She came up to see Robbie.
Robbie was having a good morning. His O2 needs were down to 35% (from 60% yesterday) and he was sleeping quite well. He did freak me out a little with a heart rate that kept dropping a little bit (not enough to qualify as a Brady, but enough so I noticed) but he was doing well.
After seeing my friend off and dumping another load of boob juice, I was able to Kangaroo him for an hour and a half. God I love that kid. He did well- no extubation and his heart & O2 were fantastic.
He was having some PGA (where he doesn't digest all of his feedings) but as of this evening, he'd had a glycerin enema (they said he was poopy at each changing, but just a little. Apparently he had a LOT more in there) and since then has been digesting better.
Anyway, much to my chagrin, I had to put him back to bed and head to my u/s.
Of course, the U/S couldn't have been at Robbie's hospital, so I had to drive across town again.
I do not have a blood clot.
I do, however, have u/s lube in my underwear. Seriously, they check it from groin to ankle. I peed before I left the office and literally and literally had to clean the lube from my underwear. And that is not NEARLY as fun or dirty as it sounds.
From there, I headed home. It hurt me to head east (home) instead of west (hospital.) But we needed some groceries. The cats were a day from being starving. And they outnumber us.
The hubby was going to visit Robbie after work, so I sucked it up and went home.
I've now managed to stock the fridge, pick up the house and do some laundry. Call me wonder woman.
It's weird how strange it feels to do "chores" now. who gives a shit about rust stained sinks when my son is in the hospital? But they have progressed to a state that I can't ignore for long. I'll get to those later.
What a weird normal this is.
--Trish
Wednesday, June 18, 2008
TWO POUNDS!
TWO POUNDS!
They gave him the Lasix last night so we expected him to lose, but he didn't. He hit 2 lbs today!
*dances around*
Of course, most of the rest of it was less than exciting today. She says he's a bit touchy (I would be, too.), his morning food check, he gave 5cc back, his o2 needs are up a bit. But they started him on some vitamins & some steroids, so hopefully in a day or two things will be better.
And of course, he hasn't extubated himself yet today, so that's something.
I'm off to the social security office to get him a social security number. He qualifies for the low birth weight program but he has to get his SS# issued ASAP in order to get it done. It's $30/month which isn't much, but at least it's something.
Here's hoping I don't get swallowed whole in the SS office.
They gave him the Lasix last night so we expected him to lose, but he didn't. He hit 2 lbs today!
*dances around*
Of course, most of the rest of it was less than exciting today. She says he's a bit touchy (I would be, too.), his morning food check, he gave 5cc back, his o2 needs are up a bit. But they started him on some vitamins & some steroids, so hopefully in a day or two things will be better.
And of course, he hasn't extubated himself yet today, so that's something.
I'm off to the social security office to get him a social security number. He qualifies for the low birth weight program but he has to get his SS# issued ASAP in order to get it done. It's $30/month which isn't much, but at least it's something.
Here's hoping I don't get swallowed whole in the SS office.
Tuesday, June 17, 2008
Again and again.
Yep. He actually managed to extubate himself AGAIN.
Twice in one day. And technically three times because after they FINALLY got him reintubated tonight, they went to tape it and managed to pull it out again. So before they could even get him back to bed, they had to start all over again.
It was a long day. David did get a urology appointment- July 3rd. That seems so far away. I'm scared. If he had pain, I'd be more convinced it was kidney stones, but he doesn't. So I think scarier stuff.
I got to the hospital and everything felt out of sorts. Robbie was fine but restless. It was bright in the NICU. It felt weird.
L- The mom of the baby to Robbies left closed the blinds to the little window close to Robbie. That helped a little. He was getting a blood transfusion so he couldn't be held. It takes 2 hours. I talked to him and gave him still touch to quiet him. Finally his nurses got chatty and kept me company a while.
After the two hours were up, I could finally hold him. The holding went well. I only heard weird sounds two or three times and it was fine each time. But then it was time to put him back to bed. The night nurse got him to bed and suddenly said "what just happened" and I said "that doesn't sound good" and I could see the tube coming out of his mouth.
I really do think she pulled it when she put him to bed. They always get a 2nd nurse to help and she didn't. There are just too many tubes and wires to do it alone.
I tried not to panic as they came to try to reintubate. At one point he has 6 nurses and respiratory therapists working on him. They did a good job of keeping his stats up with the baby, but the NP seemed to be having issues with the metal thing that looks through the vocal chords.
I was really trying to stay calm and thought I was doing okay until one of the nurses came and sat next to me and said "it's not your fault. I don't want you to think this is because you kangarooed him." Of course, being nice to me when I'm trying to be stoic is the worst thing you can do. That's when I started crying. The nurse got me a tissue and explained everything that was going on.
But it took forever. I don't mean "it felt like forever." I mean, it took about a half hour to get it done. The first time. That's a LONG time to see your kid being worked on. David kept trying to touch me. I just wanted to be left alone.
After they got it in, no one seemed convinced it was right. X-ray came to check it and they really decided that it wasn't in, but let them take the x-ray to see. But before it could even be read they decided it definitely wasn't in. Back to the bagging.
At one point another NP came by and told us we were "welcome to step out." I'm afraid I couldn't stifle the snotty laugh. "I don't think so. We'll be here until he's settled." I'm sure she thinks I'm a bitch, but anyone who thought I was "stepping out" while they tried to keep my son's heart beating and brain oxygenated is insane.
The 2nd intubation took less time. Maybe 15 minutes. But the whole thing took nearly an hour.
Once they got him done, I went to calm him. He was tired so he wasn't doing much, but when they put his feeding tube back in before X-ray came, he was PISSED. I finally got him calmed down. X-ray took the film and I sat at his bedside soothing him. When the call came that everything was in the right place, I got him settled in and back to sleep and finally agreed to go pump before my boobs exploded.
David came with me to the pumping room. I thought I was okay. Until he asked. People really need to stop asking me if I'm okay. The answer, quite frankly, is no. But what choice do I have?
I tried to say that yes- I was okay, but instead I broke down. I sobbed for a while. Harder than I have since Robbie was born. I kept thinking that I'd stop, but I couldn't. All I kept saying was that no baby deserved to have to go through all of this. All I could think was how I did this to him. My body failed. If I could have stayed pregnant he wouldn't have to be poked at, prodded at, tubes shoved everywhere, needles in his heels, alarms sounding every few minutes, nurses turning him every few hours so his head doesn't flatten. It's just not fair. I failed, but he suffers.
I just don't understand. None of these babies deserve this torture. They should be floating in amniotic bliss. Not having lights shone in their sensitive little eyes.
It just isn't right.
After I finally stopped crying, I got back to business. Milk. Something my body can manage.
David was clearly worried about me. All I could tell him was that I'd manage. I just need him not to be sick. He said he'd do his best.
We headed back to the NICU milk in hand. Robbie's partner (the little girl to his left) had visitors- her dad and grandma. I hadn't really formally met her dad, so we introduced ourselves. I was disheveled. Her grandma looked concerned. I told them of our adventure.
They were very kind. But by the grace of God goes them.
We finally made our way out after 10 o'clock.
Home to pump again and then to bed.
Tomorrow we do it again.
--Trish
Twice in one day. And technically three times because after they FINALLY got him reintubated tonight, they went to tape it and managed to pull it out again. So before they could even get him back to bed, they had to start all over again.
It was a long day. David did get a urology appointment- July 3rd. That seems so far away. I'm scared. If he had pain, I'd be more convinced it was kidney stones, but he doesn't. So I think scarier stuff.
I got to the hospital and everything felt out of sorts. Robbie was fine but restless. It was bright in the NICU. It felt weird.
L- The mom of the baby to Robbies left closed the blinds to the little window close to Robbie. That helped a little. He was getting a blood transfusion so he couldn't be held. It takes 2 hours. I talked to him and gave him still touch to quiet him. Finally his nurses got chatty and kept me company a while.
After the two hours were up, I could finally hold him. The holding went well. I only heard weird sounds two or three times and it was fine each time. But then it was time to put him back to bed. The night nurse got him to bed and suddenly said "what just happened" and I said "that doesn't sound good" and I could see the tube coming out of his mouth.
I really do think she pulled it when she put him to bed. They always get a 2nd nurse to help and she didn't. There are just too many tubes and wires to do it alone.
I tried not to panic as they came to try to reintubate. At one point he has 6 nurses and respiratory therapists working on him. They did a good job of keeping his stats up with the baby, but the NP seemed to be having issues with the metal thing that looks through the vocal chords.
I was really trying to stay calm and thought I was doing okay until one of the nurses came and sat next to me and said "it's not your fault. I don't want you to think this is because you kangarooed him." Of course, being nice to me when I'm trying to be stoic is the worst thing you can do. That's when I started crying. The nurse got me a tissue and explained everything that was going on.
But it took forever. I don't mean "it felt like forever." I mean, it took about a half hour to get it done. The first time. That's a LONG time to see your kid being worked on. David kept trying to touch me. I just wanted to be left alone.
After they got it in, no one seemed convinced it was right. X-ray came to check it and they really decided that it wasn't in, but let them take the x-ray to see. But before it could even be read they decided it definitely wasn't in. Back to the bagging.
At one point another NP came by and told us we were "welcome to step out." I'm afraid I couldn't stifle the snotty laugh. "I don't think so. We'll be here until he's settled." I'm sure she thinks I'm a bitch, but anyone who thought I was "stepping out" while they tried to keep my son's heart beating and brain oxygenated is insane.
The 2nd intubation took less time. Maybe 15 minutes. But the whole thing took nearly an hour.
Once they got him done, I went to calm him. He was tired so he wasn't doing much, but when they put his feeding tube back in before X-ray came, he was PISSED. I finally got him calmed down. X-ray took the film and I sat at his bedside soothing him. When the call came that everything was in the right place, I got him settled in and back to sleep and finally agreed to go pump before my boobs exploded.
David came with me to the pumping room. I thought I was okay. Until he asked. People really need to stop asking me if I'm okay. The answer, quite frankly, is no. But what choice do I have?
I tried to say that yes- I was okay, but instead I broke down. I sobbed for a while. Harder than I have since Robbie was born. I kept thinking that I'd stop, but I couldn't. All I kept saying was that no baby deserved to have to go through all of this. All I could think was how I did this to him. My body failed. If I could have stayed pregnant he wouldn't have to be poked at, prodded at, tubes shoved everywhere, needles in his heels, alarms sounding every few minutes, nurses turning him every few hours so his head doesn't flatten. It's just not fair. I failed, but he suffers.
I just don't understand. None of these babies deserve this torture. They should be floating in amniotic bliss. Not having lights shone in their sensitive little eyes.
It just isn't right.
After I finally stopped crying, I got back to business. Milk. Something my body can manage.
David was clearly worried about me. All I could tell him was that I'd manage. I just need him not to be sick. He said he'd do his best.
We headed back to the NICU milk in hand. Robbie's partner (the little girl to his left) had visitors- her dad and grandma. I hadn't really formally met her dad, so we introduced ourselves. I was disheveled. Her grandma looked concerned. I told them of our adventure.
They were very kind. But by the grace of God goes them.
We finally made our way out after 10 o'clock.
Home to pump again and then to bed.
Tomorrow we do it again.
--Trish
again
Welp, my kid extubated himself again today. I just talked to his day nurse. She was changing yet another "giant poop" and Robbie coughed and out came the tube.
She said he just laid there and looked like "What?!"
She suspects he had outgrown his tube. He gained another 80 grams (that puts him at 1lb 15oz!) and she said they choose the tube size based on weight.
So he has yet another fresh tube and a clean butt. And is now apparently sleeping peacefully.
Since he extubated himself the other day, every time I warn the nurses they say "I heard!" so he already had a reputation. I suddenly picture Little Johnny jokes only "Little Robbie."
Fortunately (?) they all seemed amused by it, not annoyed.
She did say he seemed a little puffy and may need some lasix to get rid of some water. Apparently that is common when they gain weight quickly. I'm told I don't need to worry.
In other news- not sure if you saw mrs. spits comment on my last blog- but apparently the scalp tinglies is a labetilol thing (That's the BP med they just took me off of.) I went and looked it up and sure enough- it's listed as a side effect. Perhaps I'm NOT going to die of a brain aneurysm after all. I'm still going to call the doctor because I was told to, but I do feel relieved about it. It's weird to not feel part of your head.
David has his doctor's appointment this morning. I don't expect answers today. I figure they'll either do some tests or send him to a urologist, but either way, we won't know anything right away. But at least he's there. Essentially- he had a fairly significant amount of blood in his underwear. I found it when sorting the laundry. He acted like it was no big deal. I nearly had a nervous breakdown.
We wait and see.
Keep praying.
--Trish
She said he just laid there and looked like "What?!"
She suspects he had outgrown his tube. He gained another 80 grams (that puts him at 1lb 15oz!) and she said they choose the tube size based on weight.
So he has yet another fresh tube and a clean butt. And is now apparently sleeping peacefully.
Since he extubated himself the other day, every time I warn the nurses they say "I heard!" so he already had a reputation. I suddenly picture Little Johnny jokes only "Little Robbie."
Fortunately (?) they all seemed amused by it, not annoyed.
She did say he seemed a little puffy and may need some lasix to get rid of some water. Apparently that is common when they gain weight quickly. I'm told I don't need to worry.
In other news- not sure if you saw mrs. spits comment on my last blog- but apparently the scalp tinglies is a labetilol thing (That's the BP med they just took me off of.) I went and looked it up and sure enough- it's listed as a side effect. Perhaps I'm NOT going to die of a brain aneurysm after all. I'm still going to call the doctor because I was told to, but I do feel relieved about it. It's weird to not feel part of your head.
David has his doctor's appointment this morning. I don't expect answers today. I figure they'll either do some tests or send him to a urologist, but either way, we won't know anything right away. But at least he's there. Essentially- he had a fairly significant amount of blood in his underwear. I found it when sorting the laundry. He acted like it was no big deal. I nearly had a nervous breakdown.
We wait and see.
Keep praying.
--Trish
Monday, June 16, 2008
Off
If you would, please say an extra little prayer for us tonight.
David's seeing the doctor in the morning. At this point, the best theory I can come up with is maybe a kidney stone in his bladder. I hope it's "only" as serious as that.
And Robbie just felt "off" today. He had a couple of Bradys (where his heart rate drops) which isn't like him. He was a bit restless and just.. not quite right. They have planned some tests for the morning and we'll know more tomorrow, but I'm worried. I mean, I'm always worried, but well.. you know what I mean.
And as for me.. well.. I hadn't mentioned it, but I may as well. I've had this weird numb spot on my head since the whole pre-e thing came about. It's like part of my right temple/scalp is numb. I mentioned it to the doctor last week and she was clueless. She hoped maybe it was a weird reaction to the BP meds and that once I was clear of them, it would go back to normal, but so far, no luck. If it's still that way on Wednesday, I'm to call back again. I don't have a headache or any obvious neurological issues so it's PROBABLY some random nerve thing, but I'm not going to lie- it's freaking me out a bit. It's probably partly hypochondria- that whole "almost had a stroke" thing has left me a little shaken. But it's still weird.
I feel like my whole little family is just a mess.
--Trish
David's seeing the doctor in the morning. At this point, the best theory I can come up with is maybe a kidney stone in his bladder. I hope it's "only" as serious as that.
And Robbie just felt "off" today. He had a couple of Bradys (where his heart rate drops) which isn't like him. He was a bit restless and just.. not quite right. They have planned some tests for the morning and we'll know more tomorrow, but I'm worried. I mean, I'm always worried, but well.. you know what I mean.
And as for me.. well.. I hadn't mentioned it, but I may as well. I've had this weird numb spot on my head since the whole pre-e thing came about. It's like part of my right temple/scalp is numb. I mentioned it to the doctor last week and she was clueless. She hoped maybe it was a weird reaction to the BP meds and that once I was clear of them, it would go back to normal, but so far, no luck. If it's still that way on Wednesday, I'm to call back again. I don't have a headache or any obvious neurological issues so it's PROBABLY some random nerve thing, but I'm not going to lie- it's freaking me out a bit. It's probably partly hypochondria- that whole "almost had a stroke" thing has left me a little shaken. But it's still weird.
I feel like my whole little family is just a mess.
--Trish
Monday morning report
Called the nurse this am. I managed to catch shift change, so day nurse handed me off to night nurse and when night nurse came on the phone instead of saying hello she said "800 grams!"
That puts him at 1lb 12oz. Now, truth be told, she weighed him before his two huge (there's that word again) poops. But since I doubt he pooped 50 grams worth, he's still up and we're counting it. Of course, when I told her exactly that she said "Well, I did say huge..." My baby is a world class pooper. I couldn't be prouder.
His oxygen needs are still down from where they were a couple of days ago, between 28 & 37%. Since late last week he had crept up into the 50% range, I'm still calling this improvement.
A pleasant nurse with pleasant news is a helluva way to start the day. The roller coaster climbs. I'll start bracing for the fall in a minute. Hold on tight.
--Trish
That puts him at 1lb 12oz. Now, truth be told, she weighed him before his two huge (there's that word again) poops. But since I doubt he pooped 50 grams worth, he's still up and we're counting it. Of course, when I told her exactly that she said "Well, I did say huge..." My baby is a world class pooper. I couldn't be prouder.
His oxygen needs are still down from where they were a couple of days ago, between 28 & 37%. Since late last week he had crept up into the 50% range, I'm still calling this improvement.
A pleasant nurse with pleasant news is a helluva way to start the day. The roller coaster climbs. I'll start bracing for the fall in a minute. Hold on tight.
--Trish
Sunday, June 15, 2008
Pictures!
Robbie pics from the last 2 days.
Snuggled into cleavage, as every man should be.
Eyes wide open!
The kangaroo position:
My nurse was very embarrassed that she caught me flipping everyone off. Mommy thinks it's funny.
Snuggled into cleavage, as every man should be.
Eyes wide open!
The kangaroo position:
My nurse was very embarrassed that she caught me flipping everyone off. Mommy thinks it's funny.
Father's Day
Well, Saturday went better than Sunday.
I was able to Kangaroo for about 4 hours. And there was no extubation.
It's actually crazy to me how much better the world feels with my baby on my chest.
At home, I feel nervous, lost, wrong. Even heading to the hospital I fear something bad happening. But I get there and they get him onto me and everything is right with the world. Even when he pees on me (four times yesterday- TYVM) I'm blissfully happy. And he does really well, too, so I don't think it's just me.
There isn't really much to report. Dr. D came by and said they were planning another chest film to check his lungs and then they'd go from there. There is talk of maybe a round of steroids to calm any inflammation down. There are, so far, no signs of infection (Please keep praying for that) so they think the haziness may be inflammation from the vent and healing going on in his lungs.
His feedings continue to go well. He's up to 9ml/2 hours. They've added both fortifier and protein and he's still doing well. He's up to 750 grams which is about 1 lb 10 oz. He could be gaining more weight, but his feedings are going so well that I have to think it'll happen eventually. Of course, 9ml is a little bit of nothing, but it sounds like so much more than the 2ml that he started on, I'm just hanging on to how good it sounds.
Right now, we're just waiting. They said the big goals for the next couple of weeks are working on his breathing and his feedings. When he's on my chest to Kangaroo, I try to take a few deep breaths every now and then. My little psychic way of saying "ya hear that- that's what we need."
He was 2 weeks old yesterday. The parent volunteers of NICU grads organized a father day photo opportunity. A photographer donated her time to take a picture of dads with their babies. David had his done. They said we should have the film and a CD of the photo in about 10 days. You can be sure I'll be posting that for all the world to see.
Today is father's day. David wanted to sleep in, then asked for a new pair of work pants and maybe a shirt.. Then we'll spend the rest of the day with Robbie. He's going to Kangaroo him this afternoon. I'm a little nervous because last time David held him Robbie got so cold. David's not quite the nurturer than I am. I'm afraid he'll get restless or not hold him tight enough. I know I'm being obsessive but I can't help it. I'm a helicopter mom already.
I'll just check his temp frequently and make sure we have warm blankets. I'm sure it'll be fine, if nerve wracking for me.
Hope everyone out there is having a good Father's day. Thanks for the continued thoughts & prayers. We need 'em.
--Trish
I was able to Kangaroo for about 4 hours. And there was no extubation.
It's actually crazy to me how much better the world feels with my baby on my chest.
At home, I feel nervous, lost, wrong. Even heading to the hospital I fear something bad happening. But I get there and they get him onto me and everything is right with the world. Even when he pees on me (four times yesterday- TYVM) I'm blissfully happy. And he does really well, too, so I don't think it's just me.
There isn't really much to report. Dr. D came by and said they were planning another chest film to check his lungs and then they'd go from there. There is talk of maybe a round of steroids to calm any inflammation down. There are, so far, no signs of infection (Please keep praying for that) so they think the haziness may be inflammation from the vent and healing going on in his lungs.
His feedings continue to go well. He's up to 9ml/2 hours. They've added both fortifier and protein and he's still doing well. He's up to 750 grams which is about 1 lb 10 oz. He could be gaining more weight, but his feedings are going so well that I have to think it'll happen eventually. Of course, 9ml is a little bit of nothing, but it sounds like so much more than the 2ml that he started on, I'm just hanging on to how good it sounds.
Right now, we're just waiting. They said the big goals for the next couple of weeks are working on his breathing and his feedings. When he's on my chest to Kangaroo, I try to take a few deep breaths every now and then. My little psychic way of saying "ya hear that- that's what we need."
He was 2 weeks old yesterday. The parent volunteers of NICU grads organized a father day photo opportunity. A photographer donated her time to take a picture of dads with their babies. David had his done. They said we should have the film and a CD of the photo in about 10 days. You can be sure I'll be posting that for all the world to see.
Today is father's day. David wanted to sleep in, then asked for a new pair of work pants and maybe a shirt.. Then we'll spend the rest of the day with Robbie. He's going to Kangaroo him this afternoon. I'm a little nervous because last time David held him Robbie got so cold. David's not quite the nurturer than I am. I'm afraid he'll get restless or not hold him tight enough. I know I'm being obsessive but I can't help it. I'm a helicopter mom already.
I'll just check his temp frequently and make sure we have warm blankets. I'm sure it'll be fine, if nerve wracking for me.
Hope everyone out there is having a good Father's day. Thanks for the continued thoughts & prayers. We need 'em.
--Trish
Saturday, June 14, 2008
I watched my baby be bagged tonight.
Pretty much just like on TV. Only about 8 billion times more terrifying.
He's okay and last I knew sleeping like.. well.. a baby. I might still be shaking a little.
We had a decent enough day, really. I really liked his day nurse. She is clearly a veteran nurse and explained everything in detail but in a way that I could understand.
Robbie was up and down on his O2 needs, but mostly just barely outside the parameters. Basically just enough to keep his nurse on her toes. He managed to poop on his own again this morning. And poop enough to require his entire pad to need changing. I giggled and told her I was sorry she had to change everything, but I was thrilled to hear it. She brushed away my apology and agreed "Pooping is good!"
I asked about the density on his X ray and if they suspected infection (since they sent off a culture) why he wasn't on antibiotics. she said he has no signs of infection. All his other numbers are good. This was more of a routine check than anything.
About 2:30 we decided to Kangaroo. He got mellow. She commented how well he does when he Kangaroos. I beamed. A couple of other nurses that have taken care of Robbie came by and made comments about how well he does when he Kangaroos, how his nurse was getting it easy now because he just loves to be with his mommy. It was awesome.
They've upped his feeds again- 9ml/2hours started this afternoon. He tolerated the fortifier that was started a couple of days ago really well, so today they were going to add some protein as well. I think Robbie inherited his dad's stomach. Good for him!
The mom of the baby to Robbie's left (same size as Robbie) is in awe. She's on 2ml. We might try to encourage them to compete. They already communicate via their alarms. The nurses tell them to "stop texting" each other.
After more than 3 hours of Kangarooing, I finally had to admit that I needed to get up. I was overdue for pumping, and frankly, I couldn't feel my butt. Kangarooing isn't just sitting- it's sitting STILL. His vent tubes are taped to my shirt, everything else is arranged carefully. Twice I had his feeding machine in my lap. There's no real way to shift your weight. And really, these are hospital recliners- not La-z-boys.
His nurse came over and we pulled back his blankets, she unhooked one of his monitors and put it in his bed. We both heard "pssh pshh pssh pssh" and she said "What was that?" then all of a sudden, everything went crazy.
He'd extubated. Earlier in the night he'd spit up just a tiny bit. A nurse said "maybe he spit it out when he spit up." All I knew was that I hadn't seen the nurses move that quickly before. Another nurse came and pulled Robbie from me, he was back in bed in a minute. I saw yet another nurse leave and come back very quickly with a nurse practitioner. The NP said to go get someone from the intubation team. someone said they may have to be called because they were at a delivery.
Our nurse had a blue bag and was puff puff puffing away. I watched Robbie's chest rise and fall. I was terrified.
We got out of the way, I stood a few feet away and looked helplessly from monitor to baby. I kept telling myself that they knew what they were doing and he would be fine. The intubation team would be here any minute.
There was a new baby a few beds down from Robbie and he had visitors. I wanted to scream at them to stand still- didn't they know something really, really important was happening!? Stop distracting people!
A team of three continued to work on Robbie. Finally I saw the NP trying to get the tube in. Years of watching ER & Grey's Anatomy told me what was happening. My whole body shook. I wasn't crying. I was telling myself everything was fine.
The mom of Robbie's left side friend came in and looked inquisitive. She asked me if everything was okay. I opened my mouth to answer but couldn't speak. I waved a finger as if to say "we'll know in a minute" and the tears started to fall.
She scooted away quickly realizing something big was happening.
I watched his oxygen saturation fall to 30%. Then it was suddenly in the 90s. The nurses smiled and I realized he was breathing. Reintubated. I decided perhaps I should try the breathing thing as well.
They called me over and told me to look- he was fine. They said he needed a kiss on the head. I wiped my tears and leaned down to give him one. I still couldn't stop crying.
They kept assuring me he was fine. Totally unaffected. It happens. It won't be the last time.
The nurse had told me a story about another baby who pulled his tube all the time. Drove them all crazy. He just went home a couple of weeks ago. She reminded me of the story.
I told Robbie he was grounded until he was 35. His oxygen stats were 97.. 98.. 100.. They turned his vent down a bit. Stats still 98.. 100.. they turned it down again.
Radiology came to x ray Robbie to make sure his tube was in good position. He got a new feeding tube. His nurse laughed that he timed it so that he wouldn't even miss a feeding. She was right.
The X ray showed it was fine.
My boobs were leaking. I needed to pump. I finally felt like I could walk away- though I didn't like it much.
By the time I got back with my boob juice, he was tucked in and covered and fast asleep. His vent was down to 30% and his sat was stable. More stable than it had been all day.
We sat for quite a while just staring- mostly as his monitor. A half hour went by with no alarms. The nurse said what I was thinking "This is the quietest he's been all day." We all kind of think maybe the tube wasn't in just so.. perhaps he's pulled it just a little loose even earlier than this. Maybe being reintubated was actually good for him. Even if he scared me to death.
I was still feeling a little light headed, but finally reassured. We left a little while later. By the time we got home, exhaustion had overtaken me. I slept.
They keep telling me about the roller coaster of the NICU. Do you think we could change to a kiddie ride?
--Trish
Pretty much just like on TV. Only about 8 billion times more terrifying.
He's okay and last I knew sleeping like.. well.. a baby. I might still be shaking a little.
We had a decent enough day, really. I really liked his day nurse. She is clearly a veteran nurse and explained everything in detail but in a way that I could understand.
Robbie was up and down on his O2 needs, but mostly just barely outside the parameters. Basically just enough to keep his nurse on her toes. He managed to poop on his own again this morning. And poop enough to require his entire pad to need changing. I giggled and told her I was sorry she had to change everything, but I was thrilled to hear it. She brushed away my apology and agreed "Pooping is good!"
I asked about the density on his X ray and if they suspected infection (since they sent off a culture) why he wasn't on antibiotics. she said he has no signs of infection. All his other numbers are good. This was more of a routine check than anything.
About 2:30 we decided to Kangaroo. He got mellow. She commented how well he does when he Kangaroos. I beamed. A couple of other nurses that have taken care of Robbie came by and made comments about how well he does when he Kangaroos, how his nurse was getting it easy now because he just loves to be with his mommy. It was awesome.
They've upped his feeds again- 9ml/2hours started this afternoon. He tolerated the fortifier that was started a couple of days ago really well, so today they were going to add some protein as well. I think Robbie inherited his dad's stomach. Good for him!
The mom of the baby to Robbie's left (same size as Robbie) is in awe. She's on 2ml. We might try to encourage them to compete. They already communicate via their alarms. The nurses tell them to "stop texting" each other.
After more than 3 hours of Kangarooing, I finally had to admit that I needed to get up. I was overdue for pumping, and frankly, I couldn't feel my butt. Kangarooing isn't just sitting- it's sitting STILL. His vent tubes are taped to my shirt, everything else is arranged carefully. Twice I had his feeding machine in my lap. There's no real way to shift your weight. And really, these are hospital recliners- not La-z-boys.
His nurse came over and we pulled back his blankets, she unhooked one of his monitors and put it in his bed. We both heard "pssh pshh pssh pssh" and she said "What was that?" then all of a sudden, everything went crazy.
He'd extubated. Earlier in the night he'd spit up just a tiny bit. A nurse said "maybe he spit it out when he spit up." All I knew was that I hadn't seen the nurses move that quickly before. Another nurse came and pulled Robbie from me, he was back in bed in a minute. I saw yet another nurse leave and come back very quickly with a nurse practitioner. The NP said to go get someone from the intubation team. someone said they may have to be called because they were at a delivery.
Our nurse had a blue bag and was puff puff puffing away. I watched Robbie's chest rise and fall. I was terrified.
We got out of the way, I stood a few feet away and looked helplessly from monitor to baby. I kept telling myself that they knew what they were doing and he would be fine. The intubation team would be here any minute.
There was a new baby a few beds down from Robbie and he had visitors. I wanted to scream at them to stand still- didn't they know something really, really important was happening!? Stop distracting people!
A team of three continued to work on Robbie. Finally I saw the NP trying to get the tube in. Years of watching ER & Grey's Anatomy told me what was happening. My whole body shook. I wasn't crying. I was telling myself everything was fine.
The mom of Robbie's left side friend came in and looked inquisitive. She asked me if everything was okay. I opened my mouth to answer but couldn't speak. I waved a finger as if to say "we'll know in a minute" and the tears started to fall.
She scooted away quickly realizing something big was happening.
I watched his oxygen saturation fall to 30%. Then it was suddenly in the 90s. The nurses smiled and I realized he was breathing. Reintubated. I decided perhaps I should try the breathing thing as well.
They called me over and told me to look- he was fine. They said he needed a kiss on the head. I wiped my tears and leaned down to give him one. I still couldn't stop crying.
They kept assuring me he was fine. Totally unaffected. It happens. It won't be the last time.
The nurse had told me a story about another baby who pulled his tube all the time. Drove them all crazy. He just went home a couple of weeks ago. She reminded me of the story.
I told Robbie he was grounded until he was 35. His oxygen stats were 97.. 98.. 100.. They turned his vent down a bit. Stats still 98.. 100.. they turned it down again.
Radiology came to x ray Robbie to make sure his tube was in good position. He got a new feeding tube. His nurse laughed that he timed it so that he wouldn't even miss a feeding. She was right.
The X ray showed it was fine.
My boobs were leaking. I needed to pump. I finally felt like I could walk away- though I didn't like it much.
By the time I got back with my boob juice, he was tucked in and covered and fast asleep. His vent was down to 30% and his sat was stable. More stable than it had been all day.
We sat for quite a while just staring- mostly as his monitor. A half hour went by with no alarms. The nurse said what I was thinking "This is the quietest he's been all day." We all kind of think maybe the tube wasn't in just so.. perhaps he's pulled it just a little loose even earlier than this. Maybe being reintubated was actually good for him. Even if he scared me to death.
I was still feeling a little light headed, but finally reassured. We left a little while later. By the time we got home, exhaustion had overtaken me. I slept.
They keep telling me about the roller coaster of the NICU. Do you think we could change to a kiddie ride?
--Trish
Friday, June 13, 2008
Vent continues
Well, as Dr. C and I both suspected, it doesn't look like Robbie is coming off the vent today.
According to his nurse, his up and down sats kept up all night. His oxygen needs just kept going up.
They drew a blood gas and did an x-ray and neither were particularly fantastic. They've changed his vent settings off of MMV about an hour ago and his o2 needs have already gone down a bit, though still high- 53%. Hopefully they'll continue to go down as the morning progresses.
They sent off another culture of his lung fluids. I guess this means I start another pray-there-is-no-infection fingernail chewing marathon.
His feeds through the night weren't great, he was only digesting about half of it, but as of his last feed, he took it all. Hopefully that'll continue.
My dad is taking me to the hospital today. He was planning to go anyway and rather than me use the gas, he'll take me and then David will come after work and we'll come home together. Yay for car pooling.
I'm sure the docs will come talk to me at some point today and explain what the hazy x-ray and blood gases could mean. Pray it turns out to be temporary and not serious, please.
--Trish
According to his nurse, his up and down sats kept up all night. His oxygen needs just kept going up.
They drew a blood gas and did an x-ray and neither were particularly fantastic. They've changed his vent settings off of MMV about an hour ago and his o2 needs have already gone down a bit, though still high- 53%. Hopefully they'll continue to go down as the morning progresses.
They sent off another culture of his lung fluids. I guess this means I start another pray-there-is-no-infection fingernail chewing marathon.
His feeds through the night weren't great, he was only digesting about half of it, but as of his last feed, he took it all. Hopefully that'll continue.
My dad is taking me to the hospital today. He was planning to go anyway and rather than me use the gas, he'll take me and then David will come after work and we'll come home together. Yay for car pooling.
I'm sure the docs will come talk to me at some point today and explain what the hazy x-ray and blood gases could mean. Pray it turns out to be temporary and not serious, please.
--Trish
Long day
I started the day still feeling low.
The anxiety just really getting to me.
David took me to the hospital to get my car. It was still parked there from my incident the other day. I then headed to my doctor's appointment to discuss said incident.
The appt went well. I'm off all BP meds. My BP at the office was 120/70. She agrees that it was probably my BP dropping. I'm to keep monitoring my BPs at home. She said they may go up a little, but they seem to be headed in the right direction. I just took it tonight (after having gone more than 24 hours without meds) and it was 137/86. That's not so bad, all things considered. Hopefully it continues downward back to normal in a week or so.
From there, I went to the hospital to see Robbie. His day nurse today was lovely. Robbie was doing well, though it seemed like he was desatting a lot. (O2 levels dropping a bit.) They said his morning chest x-ray showed a little less expansion on the right side than they'd really like to see, but he'd been laying on his right side, so it could have been that. We had to wait for rounds to see if they were going to extubate him or not.
I sat with him a little while, then headed out to meet David for lunch. I was still feeling pretty low at lunch. I'm worried about David. He promised to call the doctor in the afternoon.
Got back to the hospital after lunch and sat with Robbie a while longer. I was able to Kangaroo him for about an hour and a half. I'll post pics tomorrow. I love that kid.
They put him back to bed and I continued to sit with him. While I was sitting, Dr. C came through and asked how Robbie was. I said "He's okay....I guess."
He asked why the sigh and I explained that it just seemed like he was desatting a lot.
He sat down and said that sometimes it happens and it isn't unexpected. It could be because his feedings have gone up so much- could be reflux. Could be a little fluid build up. It's frustrating but not abnormal.
I thanked him for the pep talk and he went on his way.
After work, David came to the hospital and joined us. He'd made a doctor's appointment for next Tuesday.
Dr. C came back through and this time gave a bigger pep talk.
He sat down and asked how we were feeling. I admitted I was worried but never knew quite what I should be worried about vs what was normal. He said that Robbie is doing better than 50% and that he still has no reason to believe he won't do very well- it just takes time.
He said that Dr. D is still hoping to extubate tomorrow, though he (Dr. C) isn't so sure they'll be able to. They'll reevaluate in the morning. But that he could come off the vent tomorrow and be off for weeks.. or he could be on the vent for another 2 weeks and neither would be out of the realm of a normal plan.
Right now, his goal for the next couple of weeks is for him to gain some wait and we work on his breathing. (He's still at 1lb 9oz, for those keeping track. His feeds are now up to 7.5ml/2 hours. Surely the kid has to gain some more weight soon.)
After the talk, I did feel better. Dr. C has such a positive, calming affect. After he walked away, I made some sexual innuendos about him and David granted his blessing.
Shortly thereafter, we headed home. I pretty much pumped and crawled into bed. All in all it was about a 14 hour day and I definitely felt it.
I'm up now to pump and then heading back to bed. I've definitely decided that too much sleep deprivation only worsens my mood. So I'm going to try to do better.
Please continue to pray for my little family. We're nowhere near out of the woods yet, though we seem to be on the right path.
--Trish
The anxiety just really getting to me.
David took me to the hospital to get my car. It was still parked there from my incident the other day. I then headed to my doctor's appointment to discuss said incident.
The appt went well. I'm off all BP meds. My BP at the office was 120/70. She agrees that it was probably my BP dropping. I'm to keep monitoring my BPs at home. She said they may go up a little, but they seem to be headed in the right direction. I just took it tonight (after having gone more than 24 hours without meds) and it was 137/86. That's not so bad, all things considered. Hopefully it continues downward back to normal in a week or so.
From there, I went to the hospital to see Robbie. His day nurse today was lovely. Robbie was doing well, though it seemed like he was desatting a lot. (O2 levels dropping a bit.) They said his morning chest x-ray showed a little less expansion on the right side than they'd really like to see, but he'd been laying on his right side, so it could have been that. We had to wait for rounds to see if they were going to extubate him or not.
I sat with him a little while, then headed out to meet David for lunch. I was still feeling pretty low at lunch. I'm worried about David. He promised to call the doctor in the afternoon.
Got back to the hospital after lunch and sat with Robbie a while longer. I was able to Kangaroo him for about an hour and a half. I'll post pics tomorrow. I love that kid.
They put him back to bed and I continued to sit with him. While I was sitting, Dr. C came through and asked how Robbie was. I said "He's okay....I guess."
He asked why the sigh and I explained that it just seemed like he was desatting a lot.
He sat down and said that sometimes it happens and it isn't unexpected. It could be because his feedings have gone up so much- could be reflux. Could be a little fluid build up. It's frustrating but not abnormal.
I thanked him for the pep talk and he went on his way.
After work, David came to the hospital and joined us. He'd made a doctor's appointment for next Tuesday.
Dr. C came back through and this time gave a bigger pep talk.
He sat down and asked how we were feeling. I admitted I was worried but never knew quite what I should be worried about vs what was normal. He said that Robbie is doing better than 50% and that he still has no reason to believe he won't do very well- it just takes time.
He said that Dr. D is still hoping to extubate tomorrow, though he (Dr. C) isn't so sure they'll be able to. They'll reevaluate in the morning. But that he could come off the vent tomorrow and be off for weeks.. or he could be on the vent for another 2 weeks and neither would be out of the realm of a normal plan.
Right now, his goal for the next couple of weeks is for him to gain some wait and we work on his breathing. (He's still at 1lb 9oz, for those keeping track. His feeds are now up to 7.5ml/2 hours. Surely the kid has to gain some more weight soon.)
After the talk, I did feel better. Dr. C has such a positive, calming affect. After he walked away, I made some sexual innuendos about him and David granted his blessing.
Shortly thereafter, we headed home. I pretty much pumped and crawled into bed. All in all it was about a 14 hour day and I definitely felt it.
I'm up now to pump and then heading back to bed. I've definitely decided that too much sleep deprivation only worsens my mood. So I'm going to try to do better.
Please continue to pray for my little family. We're nowhere near out of the woods yet, though we seem to be on the right path.
--Trish
Thursday, June 12, 2008
Worry
I feel so out of sorts again. Overwhelmed, I guess.
It seems like the more I learn, the more I have to worry about. I'm trying to focus on one day at a time. But I read about brain bleeds found at subsequent ultrasounds, disabilities, eyes problems, CP etc etc.. There's just so much to worry about. We all know I'm a world class worrier as it is. And these aren't irrational worries. These are real ones.
It's amazing to me that there are SO many preemie families out there going through all of this every day. I suppose the resilience of people never ceases to amaze me- again.
There are more immediate things to worry about. I really don't know what to do about work. We can't afford for me to stay home with no income for very long. Do I go back to work when my maternity leave is up after 6 weeks? Robbie will still be in the NICU but hopefully getting to the point of learning things like how to eat and such. I feel like I NEED to be there. But if we can afford for me to stay home maybe 2 or 3 months w/o pay, that sends me back to work about the time Robbie comes home. Then I REALLY need to be home.
I've cut out as much as I can bill wise. But essentially our mortgage, car payments, utilities & just basic payments are David's paychecks. The still leaves food and house expenses.. and let's be frank.. sometimes we're going to have to buy clothes, take the pets to the vet, and we might actually want to do something fun once in a while. I need an income.
We had planned to move next year. David is the economic developer for a city on the other side of St. Louis. We planned to move there.. housing is cheaper. We were planning on buying a cheaper house than what we have and hopefully reducing our expenses enough for me to stay home. We even talked briefly about moving that date up, but the idea of getting our house ready to sell and actually selling it now while we're dealing with Robbie in the hospital and everything.. well, there are only so many hours in the day. So we will just do our best to scrape by.
I really do believe the things tend to work out eventually. It may be ugly for a while.. but we'll get there. But the day to day figuring it out.. it's stressful.
Like I said, there's just so much to worry about.
--Trish
It seems like the more I learn, the more I have to worry about. I'm trying to focus on one day at a time. But I read about brain bleeds found at subsequent ultrasounds, disabilities, eyes problems, CP etc etc.. There's just so much to worry about. We all know I'm a world class worrier as it is. And these aren't irrational worries. These are real ones.
It's amazing to me that there are SO many preemie families out there going through all of this every day. I suppose the resilience of people never ceases to amaze me- again.
There are more immediate things to worry about. I really don't know what to do about work. We can't afford for me to stay home with no income for very long. Do I go back to work when my maternity leave is up after 6 weeks? Robbie will still be in the NICU but hopefully getting to the point of learning things like how to eat and such. I feel like I NEED to be there. But if we can afford for me to stay home maybe 2 or 3 months w/o pay, that sends me back to work about the time Robbie comes home. Then I REALLY need to be home.
I've cut out as much as I can bill wise. But essentially our mortgage, car payments, utilities & just basic payments are David's paychecks. The still leaves food and house expenses.. and let's be frank.. sometimes we're going to have to buy clothes, take the pets to the vet, and we might actually want to do something fun once in a while. I need an income.
We had planned to move next year. David is the economic developer for a city on the other side of St. Louis. We planned to move there.. housing is cheaper. We were planning on buying a cheaper house than what we have and hopefully reducing our expenses enough for me to stay home. We even talked briefly about moving that date up, but the idea of getting our house ready to sell and actually selling it now while we're dealing with Robbie in the hospital and everything.. well, there are only so many hours in the day. So we will just do our best to scrape by.
I really do believe the things tend to work out eventually. It may be ugly for a while.. but we'll get there. But the day to day figuring it out.. it's stressful.
Like I said, there's just so much to worry about.
--Trish
Wednesday, June 11, 2008
Robbie update
Just spoke to Robbie's nurse. He's doing quite well.
They've upped his feedings AGAIN. (I think this is something like 5x in 4 days.) He's up to 6.5ml/2 hours now. They're actually going to stop his IV fluids soon in hopes that he'll actually maintain his fluid balance from his food rather than IVs. Keep your fingers crossed.
Also- they have him on a little bit different kind of ventilation setting. It's MMV. Minimal something ventilation, I think. (Just go with it.) Basically, it lets Robbie breathe on his own but it keeps track of his breaths so that if he misses one, the ventilator does it for him. It's something they do in preparation to extubate him. She said that as they watch the vent, Robbie is essentially breathing on his own. Looks good for extubation tomorrow.
He kept only having smears of poop at each diaper change, so they went ahead and gave him a glycerin and he has a real poop as well. Pooping is a big deal in the NICU, I assure you.
It was a good phone call. Which I needed.
And David has agreed to go to the doctor.
And I feel totally fine today and am hopeful the doc tells me tomorrow that I can just start lowering my BP meds and I can go see my son.
It feels REALLY wrong to be piddling around the house while my son is across the city in the hospital. I'm trying to make the most of my day.. doing laundry etc.. and considering a nap now. But it's weird. All you mommies out there- go kiss your kids in my honor. And say a little prayer for all of us, if you would.
--Trish
They've upped his feedings AGAIN. (I think this is something like 5x in 4 days.) He's up to 6.5ml/2 hours now. They're actually going to stop his IV fluids soon in hopes that he'll actually maintain his fluid balance from his food rather than IVs. Keep your fingers crossed.
Also- they have him on a little bit different kind of ventilation setting. It's MMV. Minimal something ventilation, I think. (Just go with it.) Basically, it lets Robbie breathe on his own but it keeps track of his breaths so that if he misses one, the ventilator does it for him. It's something they do in preparation to extubate him. She said that as they watch the vent, Robbie is essentially breathing on his own. Looks good for extubation tomorrow.
He kept only having smears of poop at each diaper change, so they went ahead and gave him a glycerin and he has a real poop as well. Pooping is a big deal in the NICU, I assure you.
It was a good phone call. Which I needed.
And David has agreed to go to the doctor.
And I feel totally fine today and am hopeful the doc tells me tomorrow that I can just start lowering my BP meds and I can go see my son.
It feels REALLY wrong to be piddling around the house while my son is across the city in the hospital. I'm trying to make the most of my day.. doing laundry etc.. and considering a nap now. But it's weird. All you mommies out there- go kiss your kids in my honor. And say a little prayer for all of us, if you would.
--Trish
Stressed out.
I don't want to go into great detail about David's personal business here. I'm not sure he'd appreciate it. But if you could pray that he's healthy, I'd appreciate it. Had a bit of a scare today and he thinks it's no big deal. I do.
My stress level is off the charts.
--Trish
P.S. Called the doc about my "episode" yesterday. I see her again in the morning.
P.P.S. As of this morning's phone call, Robbie is doing well.
My stress level is off the charts.
--Trish
P.S. Called the doc about my "episode" yesterday. I see her again in the morning.
P.P.S. As of this morning's phone call, Robbie is doing well.
Tuesday, June 10, 2008
Good and bad
Robbie is doing well. They've gone up on his oxygen a bit today which sounds bad to me, but they keep telling me it's normal and are planning to try to pull him off the vent again on Thursday, so I suppose they must be telling me the truth.
They've upped his feeds again. He's at 5ml/2hours. And they're going to start fortifying them this evening. (More calories and vitamins.)
He's even been pooping a little. She described it as "rabbit poop." But the fact that something is coming out of him is encouraging, I think.
The bad news is that I went to see him, spent about 30 minutes, then went to pump. I got to the pumping room and suddenly felt BAD. Light headed, clammy, nauseated. I freaked out worried I was getting sick and just spent 30 minutes sitting in the NICU.
I dropped my milk off and got the hell out of there. I was too scared to even drive. David was already on his way to the hospital. I found a couch in a waiting room and laid down.
David came and I insisted he go check on Robbie again while I laid down. Then he came to take me home. I literally walked in the door, kicked my shoes off and crawled into bed.
I still feel tired, but way better than I did. I do not have a fever (97.9)
It occured to me to take my BP again, though. It's 127/72. That's way lower than it's been. I had just taken my BP medicine right before I left the house earlier. Now I wonder if I bottomed out a bit. I looked up the symptoms of low BP and it seems to fit.
I talked to his night nurse a few minutes ago and she agreed it sounds like that could be it. But either way, I'm taking 24 hours at home.
It breaks my heart knowing I won't see him tomorrow. I could honestly sit here and just bawl, but I know it's for the best. If I AM sick, his health is far more important than my peace of mind. I warned her I'd probably be calling every few hours since I wouldn't get to see him and she was encouraging of that. Thank God for kind nurses.
So my plan for the next day is to sleep, eat & pump. And call the NICU. Please pray for both of us, if you would.
--Trish
They've upped his feeds again. He's at 5ml/2hours. And they're going to start fortifying them this evening. (More calories and vitamins.)
He's even been pooping a little. She described it as "rabbit poop." But the fact that something is coming out of him is encouraging, I think.
The bad news is that I went to see him, spent about 30 minutes, then went to pump. I got to the pumping room and suddenly felt BAD. Light headed, clammy, nauseated. I freaked out worried I was getting sick and just spent 30 minutes sitting in the NICU.
I dropped my milk off and got the hell out of there. I was too scared to even drive. David was already on his way to the hospital. I found a couch in a waiting room and laid down.
David came and I insisted he go check on Robbie again while I laid down. Then he came to take me home. I literally walked in the door, kicked my shoes off and crawled into bed.
I still feel tired, but way better than I did. I do not have a fever (97.9)
It occured to me to take my BP again, though. It's 127/72. That's way lower than it's been. I had just taken my BP medicine right before I left the house earlier. Now I wonder if I bottomed out a bit. I looked up the symptoms of low BP and it seems to fit.
I talked to his night nurse a few minutes ago and she agreed it sounds like that could be it. But either way, I'm taking 24 hours at home.
It breaks my heart knowing I won't see him tomorrow. I could honestly sit here and just bawl, but I know it's for the best. If I AM sick, his health is far more important than my peace of mind. I warned her I'd probably be calling every few hours since I wouldn't get to see him and she was encouraging of that. Thank God for kind nurses.
So my plan for the next day is to sleep, eat & pump. And call the NICU. Please pray for both of us, if you would.
--Trish
Good day
It was a better day again.
Robbie's blood sugar was still down. And they took him off the antibiotics- his cultures were clear!
They increased his food again. He's up to 3.5ml/2 hours now. It excites me that he's eating well. I'm not sure anyone has ever wanted to fatten a baby up any more.
Dr. D came by and said they're tinkering with his caffeine a bit to try to optimize it, then in a day or two, they're going to try to pull him off the vent again.
I know coming off the vent is a GOOD thing, but it makes me nervous. It's so hard to see him struggle. He gets so tired and just looks haggard. No baby should have to look haggard, especially not one who has been through as much as Robbie. If only I could do it for him.
I got to hold him today for 2 hours. There are no pictures. I forgot to get my camera out before we got settled and I was by myself. Just trust me that it was awesome.
I was nervous about him getting cold, but his nurse said it was fine. I wore a hospital gown (I have to find a decent button down shirt somewhere) and then she covered him with 2 blankets from the warmer, then the big, thick blanket that my friends gave me the other day. I kept my hand on his back (of course, it covers most of his body) the whole time as well. She took his temperature about 30 minutes into it and he was nice and toasty. Even as she dug his arm out she said "oh... he's WARM."
I was laying back in the recliner just chatting quietly with the grandma of the littler girl to the left of Robbie when I suddenly felt warm......and wet.
Yes. My son peed on me. I have my christened. I was talking when I said "Annnnd.. I think I just got peed on." Everyone froze. I said "yep. Pretty sure that was pee." The nurse said he probably wiggled out of diaper, then got me a rag. She tried to get under the blankets to wipe me up a bit and of course, the movement made the pee run around to my back. I was soaked. Of course, I said out loud again "...and there it goes down my back..alrighty..." and everyone started to giggle. I was trying really hard not to giggle so as not to disturb Robbie but finally it got us all. This is definitely going in the baby book.
In the end, I held him 2 hours. When she got him back into his isolette, he was about .3 of a degree WARMER than when he came out. Success!
The nurse told me I should insist on holding him every day. If the nurses don't offer- ask. Yes ma'am.
We all decided that Robbie has a little somethin' goin' on with the girl to his left (Elizabeth) because they'd both be fine and quiet but when they'd alarm, they'd do it together. The nurse told them to stop with the morse code. It really did seem that way all day. I figure it's payback for all the heel sticks and disturbing him when he's comfy. she did some of his cares while I was holding him and made him SUPER mad. Fortunately he calms down quickly but it's amazing how you can tell he's screaming even though he can't make any noise because of the vent. He definitely knows how to express his displeasure.
In other good news, I had a follow up with my OB today. It was mainly a BP check and of course, she looked at my incision as well. Both are greatly improved. My BP was actually 120/80 when I was there. I nearly fell over. It's been a bit higher than that at home, but the fact that it's trending that way is good. And in a bit that actually stunned me- I've lost 27 pounds. That's in 11 days. I only gained a net of about 10 during my pregnancy. I guess I had a lot more swelling that we realized. As it happens, I'm now something like 16 pounds lighter than when I got pregnant. Woah.
All in all, it was a very good day. I was beyond exhausted by the time I got home. Came in and David was baking a lasagna that a friend made for us. I ate a piece, made Robbie some dinner and then passed out. I slept 3 hours. It felt like 10 for as good as it felt.
Tomorrow I'm going to try to run some errands. I'm not sure how much I'll be able to get done w/o wearing out, but I'm going to try. I want to cancel some things (gym membership etc) so save some money and one of the other gifts my friends brought the other day was a gift certificate to the bra specialty place. I'm going to get a couple of nursing bras.
Baby pee and nursing bras. It's like I'm a mom or something. Totally cool.
--Trish
Robbie's blood sugar was still down. And they took him off the antibiotics- his cultures were clear!
They increased his food again. He's up to 3.5ml/2 hours now. It excites me that he's eating well. I'm not sure anyone has ever wanted to fatten a baby up any more.
Dr. D came by and said they're tinkering with his caffeine a bit to try to optimize it, then in a day or two, they're going to try to pull him off the vent again.
I know coming off the vent is a GOOD thing, but it makes me nervous. It's so hard to see him struggle. He gets so tired and just looks haggard. No baby should have to look haggard, especially not one who has been through as much as Robbie. If only I could do it for him.
I got to hold him today for 2 hours. There are no pictures. I forgot to get my camera out before we got settled and I was by myself. Just trust me that it was awesome.
I was nervous about him getting cold, but his nurse said it was fine. I wore a hospital gown (I have to find a decent button down shirt somewhere) and then she covered him with 2 blankets from the warmer, then the big, thick blanket that my friends gave me the other day. I kept my hand on his back (of course, it covers most of his body) the whole time as well. She took his temperature about 30 minutes into it and he was nice and toasty. Even as she dug his arm out she said "oh... he's WARM."
I was laying back in the recliner just chatting quietly with the grandma of the littler girl to the left of Robbie when I suddenly felt warm......and wet.
Yes. My son peed on me. I have my christened. I was talking when I said "Annnnd.. I think I just got peed on." Everyone froze. I said "yep. Pretty sure that was pee." The nurse said he probably wiggled out of diaper, then got me a rag. She tried to get under the blankets to wipe me up a bit and of course, the movement made the pee run around to my back. I was soaked. Of course, I said out loud again "...and there it goes down my back..alrighty..." and everyone started to giggle. I was trying really hard not to giggle so as not to disturb Robbie but finally it got us all. This is definitely going in the baby book.
In the end, I held him 2 hours. When she got him back into his isolette, he was about .3 of a degree WARMER than when he came out. Success!
The nurse told me I should insist on holding him every day. If the nurses don't offer- ask. Yes ma'am.
We all decided that Robbie has a little somethin' goin' on with the girl to his left (Elizabeth) because they'd both be fine and quiet but when they'd alarm, they'd do it together. The nurse told them to stop with the morse code. It really did seem that way all day. I figure it's payback for all the heel sticks and disturbing him when he's comfy. she did some of his cares while I was holding him and made him SUPER mad. Fortunately he calms down quickly but it's amazing how you can tell he's screaming even though he can't make any noise because of the vent. He definitely knows how to express his displeasure.
In other good news, I had a follow up with my OB today. It was mainly a BP check and of course, she looked at my incision as well. Both are greatly improved. My BP was actually 120/80 when I was there. I nearly fell over. It's been a bit higher than that at home, but the fact that it's trending that way is good. And in a bit that actually stunned me- I've lost 27 pounds. That's in 11 days. I only gained a net of about 10 during my pregnancy. I guess I had a lot more swelling that we realized. As it happens, I'm now something like 16 pounds lighter than when I got pregnant. Woah.
All in all, it was a very good day. I was beyond exhausted by the time I got home. Came in and David was baking a lasagna that a friend made for us. I ate a piece, made Robbie some dinner and then passed out. I slept 3 hours. It felt like 10 for as good as it felt.
Tomorrow I'm going to try to run some errands. I'm not sure how much I'll be able to get done w/o wearing out, but I'm going to try. I want to cancel some things (gym membership etc) so save some money and one of the other gifts my friends brought the other day was a gift certificate to the bra specialty place. I'm going to get a couple of nursing bras.
Baby pee and nursing bras. It's like I'm a mom or something. Totally cool.
--Trish
Sunday, June 8, 2008
It was, indeed, a better day.
Robbie was definitely improved today. He just seemed much more content. He seemed to be struggling to stay awake instead of struggling to stay asleep as he was yesterday. Today he seemed to be trying to take in what was going on around him but just kept nodding off. He only cried once and was easily consoled.
His numbers were good.
My MIL & BIL both came up. David and I had a bit of a moment of contention because I would prefer to limit the people visiting Robbie to pretty much us and maybe our parents (and to be honest, I would limit them, too, but I knew that would upset David.) I specifically told my dad's girlfriend that she couldn't come up today. After the scare from yesterday, I'm just paranoid.
My dad's girlfriend is a smoker and frankly, I don't like her dragging her clothes into the NICU. Not even so much for Robbie who is fairly protected in his isolette, but there are 80 other babies down there. Give me a break.
My BIL is a chewer and smokes----other things. Now I really like my BIL but he's a pot head, plain and simple. And yes, today he was chewing when he got the hospital. It's probably not going to affect anything, but I still just hate all the chemicals floating around him. It's probably oozing out his pores.
Anyway, my MIL visited a little while and other than the fact that she is a little loud for my taste, it was fine. My BIL was there probably not more than 5 minutes. He stood and didn't touch ANYthing, which was fine by me.
I mostly just sat and talked to Robbie. The nurse didn't mention Kangarooing and I didn't bring it up. I think I just prefer to wait until tomorrow and see what his tests show and go from there.
A few things of interest:
-Dr. C came by to say hello. He says he's "not convinced" that Robbie has an infection. Of course, that's the answer I want to hear but I do feel a little bit like I'm caught in a game of ping pong. Yes it is.. no it isn't.. yes it is.. no, it isn't. I told him I was still quite happy that the nurse started him on the antibiotics and he agreed noting that they "have a low threshold" for starting antibiotics. Fine by me.
-I asked Dr. C about Robbie's PDA. I was so consumed by no brain bleeds & the infection/cold stress debate that I'd forgotten to ask about the repeat echo. It's fixed! Woohoo!
-He pooped a little bit all by himself today. The nurse said he had a bit of poop in his diaper earlier. I'm going to guess that he probably didn't get everything that is in there out, but the fact that SOMETHING is happening sounds good to me. (I had actually mentioned the pooping issue to Dr. C earlier and he said "yeah, all our babies have trouble with that.." Poor little constipated babies.)
-They upped his food intake from 2ml to 3ml. Now, his first 3ml feeding, he only digested 1/2 ml, so you know.. it's not all peaches & strawberries, but the fact that they think he can try it seems good to me. He was laying on his back and a little to his right side, so that could affect it, too. When I left he was on his tummy so I'm hoping when I call for my early am report they say he got through a little more.
My mood is greatly improved. Still scared, of course, but I'm a lot better than I was yesterday. Now we just wait to see what happens tomorrow.
Speaking of tomorrow, I follow up with my OB about my blood pressure. It's been a little better than it was, but still cruddy. In the 150s over low-mid 90's. But I have had one or two that were lower, so we'll see what she says.
That's it for us for now. Keep praying things continue to improve.
--Trish
Robbie was definitely improved today. He just seemed much more content. He seemed to be struggling to stay awake instead of struggling to stay asleep as he was yesterday. Today he seemed to be trying to take in what was going on around him but just kept nodding off. He only cried once and was easily consoled.
His numbers were good.
My MIL & BIL both came up. David and I had a bit of a moment of contention because I would prefer to limit the people visiting Robbie to pretty much us and maybe our parents (and to be honest, I would limit them, too, but I knew that would upset David.) I specifically told my dad's girlfriend that she couldn't come up today. After the scare from yesterday, I'm just paranoid.
My dad's girlfriend is a smoker and frankly, I don't like her dragging her clothes into the NICU. Not even so much for Robbie who is fairly protected in his isolette, but there are 80 other babies down there. Give me a break.
My BIL is a chewer and smokes----other things. Now I really like my BIL but he's a pot head, plain and simple. And yes, today he was chewing when he got the hospital. It's probably not going to affect anything, but I still just hate all the chemicals floating around him. It's probably oozing out his pores.
Anyway, my MIL visited a little while and other than the fact that she is a little loud for my taste, it was fine. My BIL was there probably not more than 5 minutes. He stood and didn't touch ANYthing, which was fine by me.
I mostly just sat and talked to Robbie. The nurse didn't mention Kangarooing and I didn't bring it up. I think I just prefer to wait until tomorrow and see what his tests show and go from there.
A few things of interest:
-Dr. C came by to say hello. He says he's "not convinced" that Robbie has an infection. Of course, that's the answer I want to hear but I do feel a little bit like I'm caught in a game of ping pong. Yes it is.. no it isn't.. yes it is.. no, it isn't. I told him I was still quite happy that the nurse started him on the antibiotics and he agreed noting that they "have a low threshold" for starting antibiotics. Fine by me.
-I asked Dr. C about Robbie's PDA. I was so consumed by no brain bleeds & the infection/cold stress debate that I'd forgotten to ask about the repeat echo. It's fixed! Woohoo!
-He pooped a little bit all by himself today. The nurse said he had a bit of poop in his diaper earlier. I'm going to guess that he probably didn't get everything that is in there out, but the fact that SOMETHING is happening sounds good to me. (I had actually mentioned the pooping issue to Dr. C earlier and he said "yeah, all our babies have trouble with that.." Poor little constipated babies.)
-They upped his food intake from 2ml to 3ml. Now, his first 3ml feeding, he only digested 1/2 ml, so you know.. it's not all peaches & strawberries, but the fact that they think he can try it seems good to me. He was laying on his back and a little to his right side, so that could affect it, too. When I left he was on his tummy so I'm hoping when I call for my early am report they say he got through a little more.
My mood is greatly improved. Still scared, of course, but I'm a lot better than I was yesterday. Now we just wait to see what happens tomorrow.
Speaking of tomorrow, I follow up with my OB about my blood pressure. It's been a little better than it was, but still cruddy. In the 150s over low-mid 90's. But I have had one or two that were lower, so we'll see what she says.
That's it for us for now. Keep praying things continue to improve.
--Trish
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