Sunday, August 31, 2008

And the survey says......

I still have the text message on my phone from a friend from the day I was inseminated with a paltry 4.5 million sperm. A friend wrote back "I'm sorry. I was praying for millions and millions."

Twelve days later- Christmas day- there were 2 lines on a stick. I wasn't quite sure what to make of it. I looked at David with a curious look on my face and when he said "What?" I said "I think I'm pregnant again." We both stared at each other for a long moment and started to smile, then quickly caught ourselves. "Let's see what the doctor says."

We'd seen 2 lines before. Twice. And no babies to show for it. We'd wait and see.

Of course, the doctor confirmed. I was due Thursday, September 4. Four days from now.

That is the day they tell me I'll be bringing my son home. He won't be a red faced newborn, maybe 8 pounds or so. Instead he'll be a tiny 3 month old hooked to a heart monitor. But he's ours. And he'll be home.

Dr. C came to talk to me today. Mostly to tell me goodbye. I cried, of course. We both told each other how much we'd enjoyed knowing each other. I promised to visit. He promised to call me about a doctor's appointment I've been nagging him to make.

A nurse or two has come by to congratulate us on going home soon. "He looks SO. GOOD." they tell me.

It's bittersweet.

I won't miss having to drive across town to see my son. I won't miss feeling like a spectator in his life. I won't miss having to wake up and wonder who is taking care of him today.

But I'll miss a lot of the people. Gavin's parents, Elizabeth's parents, Lexi's, Keith, Luca, Jacob, Cecelia...

And there are the nurses. There are the few that I won't miss at all. But by and large, I'll miss a lot of them. When they come to tell me how cute he is, to see what he's wearing today. To congratulate us on no vent, a crib, no oxygen.. going home.. They are part of the family.

They are all part of the team that saved my son's life. Even that God forsaken vent- much as I hate it- saved my son's life.

I'm forever grateful.


Now let the celebration begin.


--Trish


It wouldn't be a weekend without PICTURES!!






13weeks old! (and ANGRY!)


That's my mommy up there!


Look at my fancy hospital crib:

Saturday, August 30, 2008

Something Missing

Notice anything missing??



No oxygen!!

They took him off the oxygen yesterday about 1pm. More than 24 hours now and so far so good.

He passed his hearing test. He's getting his vaccinations this weekend. His carseat test is Monday. We're on our way out the door.

We're still working on gaining weight. He did gain an ounce on Thursday night (putting him at 4lb 3.9oz.) He gained ONE GRAM yesterday. Though I'm counting it as more because this was an actual naked weight. No cannula, no leads, nothing. But we'd like to see more.

This weekend is all about getting the house ready for Robbie to come home.

In a fantastic surprise, the crib came in yesterday. I was just about to order a new one the night before but got distracted by Robbie crying and never got back to it. Then yesterday morning the doorbell rang and it was FedEx dropping it off. I had to triple check the box to make sure it was the right one. Score!

So we're down to business getting stuff ready. I'm walking with a spring in my step.

I was due Thursday. I think I would have been doing much the same things if that were still the case. Only now I know he's a boy and lots of things I wouldn't have known before. Absolutely amazing.

-Trish

Thursday, August 28, 2008

39w

Our pediatrician called this morning. She's been so positive the last few days.

I love when she calls and says "he looked SO GREAT this morning!" She often calls me early in the morning (this morning around 7:30) so it's a wonderful way to start the day.

Today it was even better. She said she thinks he'll be home in 5-7 days. She doesn't think he's going to need to come home on oxygen. He'll definitely come home on a monitor.

The monitor is almost mandatory based on his gestational age at birth. And it's perfectly fine by me. Maybe I'll be able to sleep once in a while instead of staring at him to make sure he's still breathing.

We have Dr. C this so it makes the day even brighter. (He threatened to find my blog and read it today, so umm.. well.. uh.. Hi, Dr. C.) He asked me this morning if I thought he needed anything changed today. This was after yesterday asking ME if Robbie was going to go home on oxygen.

What a difference a week can make. Last week I have the doctor who acts like I'm a nutcase for asking questions about a surgery and this week we have the doctor who asks my opinion. I love feeling like part of the team.

In any case, today I brought our carseat to the hospital. For now it looks like the plan is to wait until Monday for the car seat test (he has to be able to sit in the car seat w/o dropping his saturations for the length of time it would take us to get home- so about 45 minutes.)Robbie's physical therapist is going to fit him into the seat and teach me the whole thing and will also install the base and such. She'll be back on Monday so we'll do everything then.

Dr. C wants to leave Robbie on the oxygen he's on (1/16 liter) for another day or so and then try him off of oxygen completely.

Robbie's eating like a champ. He went about a day and a half w/o having to be tube fed at all.

Yesterday his G Tube was leaking milk (a LOT of milk) and the surgeon had to come adjust the balloon in it. Robbie was STARVING and hysterical in the meantime. So at one point we moved him to 2 hour feedings just trying to satisfy him a little more. Well, after his tube got fixed and we gave him some gas drops (in a desperate attempt to please him) he slept HARD for a while and didn't want to wake up after 2 hours to eat, so we tubed that one. But we then moved him back to 3 hour feedings and he's done great since then.

He wouldn't nurse last night at all. I think he was just too hysterical for food and the boobs are slower than a bottle. But we're going to give it another shot today. Wish us luck.

And go ahead and sacrifice another moose or two. He did manage to gain 5 grams last night but that's not nearly enough. The one thing that might hang us up at the hospital is if he won't gain weight steadily, so get the moose fires burning.

--Trish

Wednesday, August 27, 2008

Events!

It has been an extremely eventful day, but it's all good stuff.

The occupational therapist wanted to meet with me today at 11 to see how Robbie did with a bottle post-surgery.
It went great. He took the whole thing in about 10 minutes. And has done the same all day. That's 5 bottles in a row I've given him now with very minimal problems.

He doesn't seem to burp well now. They said some kids don't burp after a fundo so it's not surprising. Twice during one of the feeds, it FELT like he was going to burp really big but didn't, but dropped his heart rate instead. I think it hurt and he stimulated a nerve that can make that happen.

But he paced himself eating really well. Most people don't give much thought to the process of suck-swallow-breathe-suck-swallow-breathe, but it's something that preemies have to learn. So often we get suck-suck-suck-suck-suck- heart rate drops-mom takes the bottle away-pant pant pant pant pant. So my job feeding him is to pay attention and try to not let him get to the heart rate drop part.

It can be challenging because Robbie is a voracious eater. Ideally, you just tip the bottle back a little and when he's not getting milk, he'll breathe. But not Robbie. He'll just keep sucking on air and STILL not breathe. So you have to take the bottle away after about 3 sucks. Which pisses him off.

But we really didn't have that problem today. I think we finally got the right flow nipple for him- a Dr. Brown's Level 1. What a difference it has made!

The OT came by to check how he did at his 2pm feeding and declared him the champion eater of the day. He'd made her smile! Tomorrow he gets to try the boob again.

On top of that fabulousness, he's back in a big boy crib again! And so far, so good on the temp. And that crib is back in the step-down unit!

The only very small caveat to that is that we didn't go back to the room we came from. They told us they gave our room away, but when I stopped in to say hi to our old roomies, the spot was still open. So I don't know. Both roomies parents were sad that we didn't return- but they both visited our new room.

I got a big boost today because the other roomie's mom thanked me for a little pep talk I gave her the other day. I was a little afraid I'd come off a little pushy because I was telling her to stick up for herself and her son to the nurses and to ask as many questions as she could. I didn't want to seem like I was lecturing, but fortunately it seems like she took it the way it was intended. It's nice to feel helpful.

I really hope that once things are settled at home a little, I can volunteer with the group of preemie grads that does work for the NICU here.

Oh.. and twice today I was told I was glowing. Good thing I KNOW I'm not pregnant, I'd be freaking out. I think I'm just so relieved to have Robbie doing well that it shows on my face.

They've been talking about us going home soon, too. There was talk of maybe..... TEN DAYS.

Of course it all depends on Robbie. Right now his poor little scrotum is almost black from the bruising from the surgery and he's got some swelling under one of his laparascopy incisions, but it seems that's all to be expected. But I've learned not to count on anything.. just go day by day.

But I have had to start getting things ready. I bought our carseat yesterday and will get it installed and inspected this week.

I'm on a mad hunt for a crib since the one we ordered is apparently backordered until November 20th. (Don't get me started.) If anyone knows of a static side crib with an under bed storage drawer available in a darker oak stain, please let me know. Everything either has drop sides or no storage.

It's been frustrating.

Robbie's frustrated, too. He's finally back on full feeds tonight, but that was gradual after extubation and he has NOT appreciated it. He only slept maybe 2 hours between about 10:30am and 11:30pm. He spent most of the rest of the time somewhere between mildly annoyed and flat out screaming. Everyone wanted to give him more food, but given that we just operated on his stomach, overfilling him seemed like a bad choice. So mostly I just patted/rocked/sang/begged. Just like a REAL MOM, huh?

Anyway, all in all it was a decent day. I almost hate to type it out and his "post" because usually that's followed by some horrible day, but hopefully with the stress of the weekend, I can get a pass this time.

--Trish

Monday, August 25, 2008

No news is good news

I don't have much to report this morning.
He's doing well. He's down to room air and back in his isolette.

The wound is still leaking but again I'm assured that's not troublesome. It's just leaking clear fluid, not blood or anything.

I should be able to hold him today and they say we'll be back in "our" room tomorrow at the latest.

I think I'm going to try to sneak out and get my hair cut today. I'm only about 6 months over due for one.

BTW, they did start feeding him again. It's small amounts that they'll ease up gently, but he managed to have a bowel movement last night, so things are working again, which is great.

--Trish

Sunday, August 24, 2008

Extubated!

He's off the vent!

I checked on him about 6:30 this morning and the night nurse said he was doing pretty decently, definitely showing signs of waking up.

I checked again around 10 and the day nurse said he was showing more respiratory drive.

I got in before noon and they'd weaned his ventilator down to 30 breaths. Shortly thereafter, they moved it to 25.

Our RT (seen in the video below) said she'd get him off the vent by the evening.
Day nurse said the same thing.

A couple of hours later, day nurse asked RT to find the NP to see if they could wean his settings again. RT said she'd go "tell them we're weaning." Not ask- TELL. And that's why she's my favorite.

They turned him down to 20. I went out to pump and came back and they'd switched his vent to a mode that basically just monitored his breathing. If he went too long w/o a breath, it would give it to him, but that was it.

A few hours after that, RT came to check and saw that the vent hadn't had to give him very many breaths at all- mostly just when he was squirming and crying (times when a normal person would sort of hold their breath.)

Just before 7pm, they wheeled in a high humidity machine and the extubation was on.
Robbie was pretty pissed off about being messed with yet again, but he managed.

He's very raspy but is sleeping pretty peacefully right now.

One of his laparoscopy incision was leaking body fluid earlier. It freaked me right out, but they said it's normal. They think we opened it up a little bit messing with him. The site where his G Tube is was leaking just a teeny bit as well. They're keeping an eye on both.

No word yet on when we might head back to the now-old-to-us-but-is-still-new NICU, but I'm sort of hoping it's tomorrow.

It was pretty hectic in here earlier. They got a 24 weeker that is so small that even I'm amazed. I said a prayer for her when I heard them say the mom was being sectioned right then. I would appreciate it if you did the same. Even after all this time in the NICU, it amazes me that people go through all of this ALL. THE. TIME.
Thank goodness preemies are such little fighters.

--Trish

Saturday, August 23, 2008

Bonus

Since all I'm doing today is sitting and staring at him, we have time for a quick Robbie bonus. A video taken just a couple of minutes ago.

Update: Sorry that's so dark. I guess it loses a bit in the uploading. It looks pretty bright on the camera & computer, but now that I've waited forever to upload the 31M file on the weird hospital wi-fi, I realize you can't see much.
Sorry 'bout that.

Quick update

Still dopey, still on the vent.

He has taken some breaths on his own, but mostly he's doing what they call "riding the vent." Just letting it do it for him.
They haven't given him any more fentanyl since last night. He has woke up a few times and wiggled around a little bit. He opens his eyes and looks around fairly often.

They tell me that some babies wake up in 12 hours, some babies wake up in 3 days. He got a lot of sedation, so they're not surprised that he's pretty dopey.

I'm worried, but everyone keeps reassuring me.

He had some blood sugar and blood pressure issues last night. They gave him fluids and his blood pressure is back to normal. And his blood sugar is coming down still, though it's at the high end of what they'd consider normal for post-surgery.

They haven't resumed feeding him yet. He does have bowel sounds, but not enough that they don't really want to give him food yet. He's so dopey, he doesn't seem to mind.

I'm having a little trouble watching him. I'm currently parked next to him in the ICU. He has just a diaper on, on a vent, in the ICU. This isn't what I'd call a good flashback.

When I expressed as much to his doctor, he shook his head. He said that if he'd gotten sick and was like this, my worried would be founded, but WE did this to him- so not to worry. Yeah, like that's possible.

Anyway, we're still keeping vigil and hanging in there. Keep praying.

Here's Robbie today: (P.S. The camera is working again. Yes. It was the batteries. But I swear to you, I had just put the previous batteries in 3 hours before the camera died. Must have been bad batteries.)

Friday, August 22, 2008

Out of surgery

He's out of surgery.

They were able to do the hernia/fundo laprasocopically, which is good. Turns out he also did have inguinal hernias on both sides as well.

To the brave anonymous poster who is concerned about my son's foreskin, don't worry, it's still intact. It's too early to do now. We'll return to that discussion on a day when I'm not still waiting for him to breathe on his own.

He got 7 incisions, total. Four for the fundo, 1 for the G tube and then two for each of the groin hernias.

They tell me it went well and he's doing good.

He's still pretty much out cold. He'll stir just a teeny bit every now and then. I can see him trying to suck on his ET tube every once a in while, but so far he's not trying to breathe on his own.

When he came out of surgery, he was on 40% oxygen but he's been weaned down to 28% now. They actually came and turned down his volume a bit just a few minutes ago because he actually didn't have enough CO2. Apparently he was reading like a healthy baby. And it's CO2 that drives the brain to breathe. SO they were hoping to up his level and drive his brain to try it on its own a little bit sooner. They said probably by morning, he'll be breathing.

They're holding our spot down in the New NICU. (Is it now the old new NICU because now we're back in the new old NICU?) Robbie's roommate's parents came down to visit earlier and brought gifts. If my flippin' camera would turn back on (yes, it has new batteries) I'd show you the adorable Dr. Seuss onesie that he got. Plus a bunch of pampering gifts. They're for Robbie, but SURELY he wouldn't mind if I used just a smidge of his Burt's Bees hand lotion. I mean, I'm drying my skin out washing it 800 times a day for HIM, right?

Anyway, I'll give a better blow-by-blow of the whole thing once it's over.

Just wanted everyone to know that so far so good. Keep praying. I'll relax a bit more when he's off the vent again.

--Trish

It's set

The surgery is set.

It has been a very long day.

I slept later than I had intended and when I called in to check on Robbie, the nurse who answered the phone is not one I'm overfond of. I really should have asked her not to be assigned to us long ago.

She's one of those that when I call in, she'll say "hi." in a short way that conveys "Why are you bothering me?"

When I ask how she is, she replies "he's fine."

Um. Details. Thanks.

I decided not to even get into it then, I'd just hurry and get out of the house and up to the hospital right away because I had questions for the doctor anyway.

Less than an hour later, as I was gathering my things up to take to the hospital, the phone rang and it was her.

Of course, my first instinct is to panic because the hospital was on the Caller ID.

She was calling to tell me that she was placing his IV for a blood transfusion for the surgery.

I informed her that I hadn't actually consented to the surgery yet and I had some questions that needed answered first.

She got snippy about how she needed to place it before his next feeding. (Still 90 minutes away.) I told her I was on my way then. Again with the pissy. Again, I reiterated that I had questions for the doctor. AGAIN with the pissy.

That's when I snapped. Yep. It took 11 weeks and 5 days for me to officially lose my temper. I started yelling.

I told her that I understood we were on HER schedule, we're always on THEIR schedule, but right now I couldn't tell her that Robbie was having surgery tomorrow, so there may be no need for an IV in the first place.

She was clearly taken aback. She sputtered about it not being her schedule, it was Robbie's schedule. She said the doctor was nearby and could speak to me now.

I told her I wasn't prepared just then as I didn't have my list handy and I'd like to speak to him in person. Again with the pressure. Havetomakeadecisionrighthissecond. I refused to be pressured.

After we had a little more back and forth, I finally told her to put the doctor on the phone. She offered to hold while I got my list. I told her again I wasn't prepared to discuss it right then, but to put the doctor on the phone. RIGHT. NOW.

I was on hold several minutes. I'm sure she was telling him that I was a huge crazy bitch. Too bad he already knows that, huh?

In any case, I ended up talking to the doctor at length. I got my questions answered. I'm quite certain that I irked the piss out of him, but frankly, I don't give a shit.

That's the freedom of crossing the line into bitch territory. Up until today, even when I was cranky, I tried to remain civil because I really didn't want to be thought of as unpleasant. Since we're past that point now, I may as well just go balls out and go for it.

I've joked several times today that they're going to transfer me to the Children's hospital across the city because they can't take me any more.

So, it's set. Tomorrow morning, they'll wheel him down around 10am. He's going to have a fundoplication (where they wrap his stomach around his esophagus), the hiatal hernia repair (stuffing his stomach back down where it belongs), a G Tube placement (a hole near his belly button through which he may be fed), and apparently there is some debate that he may actually have an inguinal hernia (in his groin) so they're going to check that and maybe fix it, too. And I asked about circumcision as well. I have to speak to the surgeon about that tomorrow morning, though.

Feel sorry for Robbie yet?

They tell me it's actually quick. Probably less than an hour. He'll be intubated (effing vent!) and we'll recover down at the old NICU. I have not missed it.

We hope to only be there overnight, then back to our usual spot in the new NICU. Our roommates are offering to cover our spot with their bodies to hold it for us.

I will say that Dr. Director did make a note that we'd like our same place back if possible. Probably did that just to shut me the hell up.

Pissy Nurse was quite nice to me throughout the day. Frankly, she should know better. She had a preemie herself.

I did NOT apologize for yelling. I wasn't sorry.

Robbie took one bottle this morning before I got to the hospital, and I tried to bottle feed him once during the day as well, but he was SOUND asleep and wanted no part of it.

But after his fantastic night nurse came in, we bathed him and he was WIDE awake and trying to eat his clothes. They usually tell me he's too tired after a bath to eat, but I asked if we could just try. She was all for it.

He nursed at the breast for 20 solid minutes. He did so well that she didn't gavage feed him AT ALL. He looked drunk when he was done. Breast milk coma. He slept in my arms for several hours afterward.

It was a better end to the day than it had started.

I hope tomorrow is the same.

Our pediatrician called me at the hospital tonight. She's on board with everything. When I told her that I was uneasy about the G-Tube, she gave me a thought that no one else had. He's having his esophagus worked on. If he doesn't have a G Tube, he'll need an NG tube (from nose to stomach) and that would be irritating to his esophagus and stomach.. plus can be a source of bacteria. That solidified my decision on the G tube. I feel okay about it now.

The surgery itself makes me nervous. I hate anesthesia. HATE IT. And with Robbie's breathing history, I'm nervous. And the fact that everyone keeps talking about how unusual it is for a preemie to have a hiatal hernia.. well.. Sometimes being unique is overrated.

All the nurses have assured me that our surgeon is the best. A nurse I don't even know said that if it were her child and he didn't work for this hospital, she'd follow him.

Nurses that have been very honest about not liking people in the past have also said he is great.

I feel like we're in the best hands (literally) we can be in, so we move forward.

I'll update ASAP tomorrow.

--Trish

Thursday, August 21, 2008

Surgery

The boy needs surgery.

He has a hiatal hernia. Part of his stomach protrudes up through his diaphragm into his espophagus. This causes a lot of reflux. They say it's severe, even though he doesn't really act like it's severe.

Apparently this is pretty freakin' rare, since the director of the NICU said in his 18 years here he's only seen this twice before.

They don't think it's related to him being a preemie. It's just a developmental anomoly that he probably would have had even if he'd been full term.
But the fact that he IS a preemie is pretty shitty because anesthesia isn't exactly fun an minor anyway, and of course, he's had lots and lots of breathing issues.

I managed to get this news and talk to the surgeon in less than a half an hour. By myself. No wasting time in the NICU.

The surgeon was nice. Handsome, too, if I'm being honest. And the nurses all tell me he's the best. One of our primaries who was on today said she would not say that about all the surgeons, but this is the one she likes. He's also the only one who will do it laprascopically, which is better.

Unfortunately, this is almost a no-choice situation. There really aren't any good treatments for it. If he were an adult, it could be managed with diet & drugs, but he's not eating a high fat, high acid diet these days. And he's in pain.

Then, because they're doing surgery anyway, they want to put a G tube in. It's essentially a little port down near his belly button that he could be fed through.

I honestly don't know how I feel about this.

They say it'll get him home sooner.

There are three things a preemie needs to go home-

He needs to be able to breathe.
He needs to manage his temperature.
He needs to take all his feedings by mouth.

Very often, the latter is the worst part.

For Robbie, he's almost off of oxygen. Temperature control is one of those things that comes with size- usually around the 4lb mark, which he's hovering at right now. (3lb 15.8oz tonight)

That leaves food. And with the G tube, that wouldn't matter. He'd learn to eat on his own at his own pace with no pressure. Anything he didn't take my mouth would go in his tube. Five or six weeks later, they'd take the G tube out at an office visit. It'll heal itself.

It sounds simple enough, I know. But I don't like extra incisions. And I don't want to feel like we're just going to get tossed home like it's no big deal that he doesn't know how to eat properly yet. And I've been told that most kids don't even need them past about 2 weeks anyway. So we're going to put an extra hole in his abdomen for 2 weeks less?

Yes, I want to go home. But food isn't what is keeping us at the hospital right now. And thus far, he's been a pretty good eater.

But they say that they'd rather do it now because if he DID need it later, it'd be a 2nd surgery.

I just hate it. I cried.

The doctor seemed confused. "You look sad. What's wrong?"

Dude. You just told me that you want to cut my less-than-four-pound baby open, shove his stomach back down and then tie it around his esophagus. He's going back on the ventilator that I hated with every fiber of my being for 5 straight weeks. Then you want to put a HOLE into his belly with a cute little plastic button on it and teach me how to change it out since they never come out during office hours, so you'll want to change it out yourself instead of going to the ER. Yeah. I'm fucking sad. And scared. And tired of all of this one-more-thing stuff.

Then, you add that this is not a common surgery. The surgeon tells me he has done it on smaller kids, but not much. And the director of the unit has only seen it twice? I'm not exactly inspired to confidence here. They reassure me that while they don't see this condition often, the surgery to fix it is pretty common. But I still don't like it. I'd prefer the surgeon could do this in his sleep because he does it all the time. But pediatric surgeons aren't exactly a dime a dozen. And I've been reassured by people I trust that he is THE BEST.

So yes, we'll do it. But I don't have to like it.

And when this shit is all over, I want to pull an Office Space Fax Machine Attack on a ventilator. I have much. much. rage against the machine.

The surgery will likely be Friday. The surgeon had an opening but wanted to make sure the Dr. Director thought Robbie's breathing was good enough for surgery first. He does, so I don't know if it's on the books yet or not.

He might need another blood transfusion before they do the surgery because his hematocrit was a little low. They were holding off on transfusing him because his bone marrow is making red blood cells on its own and they didn't want to signal to it that he didn't need to. But now they may go ahead and do it to make sure he's good and pumped up for the surgery.

I have a few more questions to ask tomorrow. It's hard to think of good, logical questions when you've had all of 15 minutes to digest that your son has a rare condition and requires a surgery you've never even heard of.

In the mean time.. well. The usual. I don't know what kind of animal this requires. Maybe we could burn some ant hills. They're small and precise. Sounds like what we need these days.

--Trish

Wednesday, August 20, 2008

constant

It feels like we've been in the NICU forever.

On Tuesday when we had the nurse I didn't appreciate, I left the hospital feeling like I'd been beat up. I'd been fighting all day to get Robbie the care he deserves. I was exhausted.

I had the nurse added to our please-do-not-assign-to-us-again list. It's actually the first time I'd done that.

When I asked our night nurse (a primary!) to have the charge nurse come see me, it was the nurse who'd witnessed my panic attack last week. Lovely. I'm sure she thinks I'm a total nutcase. I mostly don't care. I mean, I'm a little embarrassed- I hate being thought of as crazy, but this isn't the time to be too nice. If making sure Robbie gets the best care possible means people hate my guts so be it. I don't think it's as severe as all that, but if it comes to that, it just does.

The after-care coordinator came to talk to us about getting us schedule for the NICU follow up program. And gave me the info for the early intervention programs that Robbie qualifies for just based on birth weight. Since we live in Illinois but are likely moving to Missouri next year, she gave me the information for both states.

She said that in Missouri, it is a more parent-driven program. Basically, you have to push to get what you want. I assured her that wasn't a problem. Pushy I can do. I said it with a laugh.

At Robbie's 9:00 cares, his PGA (the remaining undigested food in his stomach) was sort of brown looking. The nurse thought it was likely the vitamins. I agreed.

But at midnight it was the same way. And it was a little redder. All I could do was sit down and wait for the NP to come and look.

He'd already had a rash of bradys early in the evening and called for a chest X ray. It looked great. They said it actually looked better than it had the last time he had one. His guts had looked great, too. There had been a discussion about doing ANOTHER CBC if he'd acted up any more, but he hadn't.

The NP came in, peeked at him and said "oh! his color is good!" Again- we get the he-looks-great speech. I like that speech, but I'm just so freakin' tired. She didn't find the funny looking PGA too concerning.

It seems like every time I turn around it's something else. So far, we've been so, so, so lucky that nothing has turned out badly. But this constant threat of something is exhausted.

Robbie will be 38 weeks tomorrow. I'd just like to settle into a feeder-grower routine. We're supposed to be past the super scary part.

I didn't leave the hospital until almost 3. His next cares were at 3:30, so I called when I got home. He had a few more flecks at that check.

He was already scheduled for an upper GI today for his reflux issues. I hope we'll know more then.

I was hoping to be back at the hospital for it, but they never know a time. Radiology calls when they're free so that the babies aren't waiting. When I called at 9:30 this morning, he was headed down then. So we just wait for the results.

I don't know what to wish for. You don't want anything to be wrong, but you also want to be able to fix it. For now, we just wait and see.

He did gain about an ounce last night. He's at 3 lb 14 oz. The moose work well.


--Trish

Tuesday, August 19, 2008

Tuesday

Remember me talking about the pad on Robbie's face that needed replaced?

Well, apparently they really should have listened to me because underneath it, he apparently had a horrible oozing rash.

The NP and our pediatrician has looked at it, and they think it's just an allergic reaction/irritation, but they did culture it to make sure. For now, they have it covered in polysporin.

This is the sort of thing that makes me crazy. I realize that if they'd changed it when I asked, it probably still would have been there, but why do I even have to ask for it to be changed?

He probably got the sensitive skin from me. I can't so much as look at the grass hard w/o getting a rash. He gets them from his leads all the time- but they get changed every day, so it's not usually a problem.

The pediatrician asked if either of us have seasonal allergies and I told her that David has them horribly. She said he probably got the gene from both of us. Poor kid.

So far he's been cursed with my big nose & forehead, David's slack jaw, and now our allergies. I sure hope he got some of our good genes, too.

He didn't gain any weight last night. Not a surprise. I guess the O.T. bottle fed him this morning and he didn't pace himself very well so he drifted a few times. Still a work in progress. That's one of those things they say just "clicks" one day and they get it. Hopefully soon.

We might need to add a moose to the fire. I'd like to hit 4lbs one of these days.

Oh- and what sort of creature do we sacrifice for good camera luck? I replaced my pretty-decent-but-on-the-fritz camera right after Robbie was born and all of a sudden the damned thing won't turn on. The worst part is that I'm so disorganized these days that I don't have a clue where the receipt is. It was a pretty cheap one (like 90 bucks) but still, I can't afford to replace a camera every 3 months! And I hate that I don't know what I did with the paperwork for it.

I guess since I skipped my whole 3rd trimester, I never got to "nesting."

I swear I need a personal assistant.

--Trish

Tired as usual

Some days feel like they must have been eleventy billion hours long.

This was one of them.

The boy is fine, but it was a long, frustrating day. I didn't care for his nurse. Nothing major. Just LOTS of minor things.

It would take her 90 seconds to put a new sticker on his face to keep his cannula in place, instead of me having to fix them and piss him off 25 times a day, for example.

Robbie's roomate's parents were just as frustrated. They actually applauded when the night nurse came in. I don't think any of us had ever been happier to see a shift change. I'll have day nurse put on my do-not-assign-to-Robbie-again list tomorrow.

I don't have a weight update.

He was having lots of reflux tonight. Plus he was just on the border of not being warm enough most of the day. He even had a couple of bradys, though I'm pretty sure they were reflux related. She was going to see about lowering his food volume a bit because we might have been over doing it.

Anyway, because of that, we didn't give him a bath or weigh him tonight. She'll probably weigh him later in the night, but for now, as far as I know he's still 3lb 12ish oz.

Off to sleep..

Trish

Monday, August 18, 2008

Order

You're getting a mid-afternoon report.

I brought the laptop to the hospital. Yay free wi-fi!

Robbie is having a good day.
The EOs were down to 10%, which is good.
I can eat cheese again.

Honestly, I expected more of a "poor little fat girl can't eat cheese" response from everyone. But really, everyone was more like "YOU CAN'T EAT CHEESE?! HOW DO YOU LIVE?!" Guess it's not just me.

Honestly, cheese and milk were easier to give up than I expected. But I've been craving a big baked potato and a tater w/o sour cream just isn't right.

In any case, I can eat cheese and they'll see what happens with his next CBC. Keep your fingers crossed.

They turned down his oxygen again. It's now at 1/16 liter. That's as low as it goes. So far, so good. He did desat once after they turned it down, but when I looked in, he didn't even have his prongs in his nose, so she didn't even chart it.

Dr. C came by and commented on what a good couple of weeks he'd had. Basically, that the poop issues are annoying, but really, he's done well overall. He asked me when Robbie's due date was in a way that lead me to believe he was alluding to him going home around then. That's 2 1/2 weeks away.

I have purposely not given much thought to when he gets to come home. I really have to focus on the here and now or I get overwhelmed and anxious. After Dr. C left the room, I got a little panicky about it. Home? Really? AM I READY FOR THIS?! Probably much like I'd be feeling if I were huge and miserably pregnant right now- ready for it to be over, but also nervous about the big change.

I just ordered Robbie's crib TODAY. And after it processed, it said it ships directly from the factory- expected in four weeks.

I guess we'll go buy the pack-and-play we'd hoped to get at a shower. The plan is really for him to sleep in the bassinette portion in our room for a while.

Anyway, I digress. This is what I mean. I think too far ahead and I get overwhelmed.

Focus on the now.

Now, we work on more nursing, more feeding, more weight gain. No more bloody stool. No more infection scares.

I'm putting in my order now.

--Trish

A good plan

We did it again!

Yes, my 2nd attempt at nursing was actually successful. It actually might have been a little too successful because they were gavage feeding him about 32cc while we practiced- AND he nursed for a good 15 minutes. And he was swallowing quite a bit, so I'm pretty sure he was getting a fair amount of milk from the breast. He actually spit up about 4 times. Not a lot, maybe a cc or two each time, but I think he was actually just too full.

It went really well. Again- he opened up immediately and rooted. If the nip would slip out, he'd grunt in frustration. GIVE THAT BACK! and he'd latch right back on again. After about 15 minutes, he started to doze off but was happily snuggled into the boob.

Again, he slept HARD afterward for a good long while. They tell me the nursing process released some happy hormones that make us both feel good. Whatever it is- it's nice.

He did gain a little bit last night. I think it ended up being about 20 or 25 grams. (There was a bit of a fiasco where we thought he'd gained 2 ounces and then realized we'd weighed him with a poopy diaper on. Oops.)

It was a fun day, really. He made me a little nervous because he was a little on the cool side a few times in a row, but he finally warmed up. (Fav. Nurse Heather threatened him with blood work and that seemed to do that trick.)He's also got a bit of loose stool again, but they tell me it's not terrible and we already had labwork scheduled for this morning, so I relaxed.

I brought in a basket of goodies to thank the NICU staff. Heather put the basket out on the table just outside our room so I could hear everyone coming to get stuff. I had signed the card from Robbie with an addition saying that we didn't want to hear any complaints about getting trying to make them fat because as far as Robbie is concerned, a softer nurse is a better nurse. I heard one nurse laugh and say that Robbie has a good sense of humor. It made me giggle. Several people came in to say thank you and it made me feel really good. They've all done so much for us, it's the least we could do.


His breathing is going well, his eating is going well. Today, his labs were good. The EOs are down again. I didn't get the actual number on the phone, but it must have been good because apparently the pediatrician wants to talk to the neonatologist about me being able to eat dairy again. Three cheers for cheese!

And today is now my first official day of leave. A set of twins whose family we're friendly with are being discharged today so I'm heading to the hospital very soon to see them off.

I'm going to drop off another basket of goodies to my OB's office and maybe show off some Robbie pictures.

And I'm going to hang out with my kiddo.

It's a good plan.

--Trish

Sunday, August 17, 2008

Momentous

Well- we did it!

I was a mix of nervous excitement when I got to the hospital yesterday. My favorite nurse (Heather) was there and she was atwitter as well.

When it was time for his feeding, she asked if I thought this would be a good time to try. Was he awake enough?

I said no, he was sleeping pretty well, but as she prepared his feeding, he started to root. He kept sticking his tongue out and pressing forward, clearly hungry. I changed my mind and said maybe it was. He wasn't wide awake, but maybe he was hungry enough that we could try.

She asked if I was ready. I said I was ready as I could be. She got us a privacy screen and called the lactation consultant for the NICU.

The LC gave me the "we don't expect him to latch on, just lick around and get the idea" speech.

She gave me a few pointers on how to handle my boob (yet again, being large breasted is a pain in the ass) and then we got him ready.

I held him in the football hold because I am already comfortable with that- that's usually how I feed him his bottles.

She told me to drag my nip down his lips a couple of times and just see if we could get him to get the idea.

I drug my nip down his lip..........and he opened his mouth! The LC said "ohhh.. there he goes!" and I pressed forward.

He didn't miss a beat. He latched on and took about 3 long sucks. Heather was behind the chair and she was cooing. The LC was in front of the chair and she commented that those were perfect strokes, he was actually nursing.

I'm not sure I was breathing.

Then.......he smiled. I could see his little dimple. I exclaimed "He's smiling!" and then I started to bawl. I had no free hand to wipe my tears, so I just let them fall.

The LC said "of course he's smiling. He was born to do this."

I sniffled.

He took one more suck and promptly fell asleep.

They were gavage feeding him while we were doing this, so there was no pressure for me to get him food or him to get any. I spent another little while stimulating him a bit. He'd lick and sort of nibble, but that was about it. But for about 30 seconds there- it was happening.

They left us alone while he finished his feeding. The mom of Robbie's little NICU friend asked from behind the screen if I wanted a picture. She was a little shy about asking, unsure if I'd think that was weird. I felt a little weird about it, but also wanted a record. So there is a photo. (No, you do NOT get to see that one!)

Afterward, Heather and LC were so positive. They talked about how great he did. When I got a little shy and said that he "only" took 3 or 4 sucks, Heather said it took her son 8 weeks to do what Robbie had just done. She had a REALLY hard time nursing.

Robbie was SOUND asleep for well over an hour. He didn't stir at all.

I really am not usually the type that buys into all the "magical moment" talk. Whether it's weddings or babies, people tend to romanticize things a bit. I often think that leads to disappointment when all of those moments end up taking 4 months of preparation and planning and then often fail to live up to our dream.

But I can honestly say, THIS was a magical moment. I know it's not that way for everyone, but for us.. it was incredibly special.

In other good news, Robbie is doing great on his low flow O2. I was at the hospital for 11 hours yesterday and he didn't desat one time. One of his leads failed at one point last night (Scaring the crap out of me for a split second until I realized there was NO WAY his heart rate was 15.) but that was the only time he alarmed all day. Amazing.

He did lose a small amount of weight last night (15 grams) which was disappointing but not unexpected. He'd finally had a very large poop, so it was probably that. For now, he's maintaining his weight, so it's something. They upped his volume quite a bit yesterday, so hopefully that will translate into some weight gain in the next few days.

Heather spoke to our pediatrician about the no dairy thing today. Our pedi says I just need to cut out the consumable dairy- no milk to drink and no cheese. I was trying to avoid things even made with butter (which is HARD) but she said that wasn't necessary. Her plan is to watch the EOs until they go down, then introduce dairy and watch them again. If they go back up- we have our solution. If they don't-I can eat dairy again.

I can live with that.

.....


My first baby was due August 16, 2007. If that baby had lived, I'd have a one year old now. Even in the midst of everything going on, the date did not escape my attention. I will always love all my babies. They are not forgotten.

Rest in peace my baby angel.

One of our roommates (G) parents is having her baby shower today. Her family is all in town and several were up to visit, including her sister. Being that there is no privacy at all in the NICU, I could plainly hear them talking about her recent loss. She had an ectopic.

At one point, I heard her lean down and tell G "I'm sorry you'll have to wait a little longer for a cousin." I was grateful to have my back to them so they couldn't see me sobbing. The baby loss club isn't one that needs more members.

Later in the day, she asked me something about pregnancy, and I told her that Robbie had been my third as I'd lost two babies before him. She paused and then started asking questions. You could tell she wasn't sure if it was okay to ask, but I answered plainly and honestly. I told her I'd heard her talk about her loss and how sorry I was. We talked a little while. I told her I'd say a prayer for them.

I hope you'll keep her in yours as well.

It was quite a momentous week- LOTS OF PICTURES! (And no - you STILL don't get to see my boob.)



My first bottle!


My big boy bed. Too bad they took it away later.





I snuggled up into my bendy boundary thingy but I left my hat behind!



I am dragon! I say rawwr!


Baby gangster flashes signs:


Mommy feeding me for the first time:


Yum Yum!


I can help!


My daddy is my hero.


If I drown in a towel, is that irony?


Mommy's eye view, part deux.




--Trish

Saturday, August 16, 2008

11w

Well, progress continues.

His labs yesterday were improved. His WBC count was down a bit, and the percentage of those that were EO cells went from 25% to 16%. His X ray still looked good. Physical exam is still good.

They upped his feeds just a tad- 25ml/3 hour and put him on Home O2. (Say it fast. Giggle with me quickly. I'm 12.) It's low flow instead of high flow. So instead of getting 2 liters/minute at 25% oxygen like he was yesterday, he's getting .25 liters of 100% oxygen. So far, he's loving it. He was satting 100% pretty much all night last night. He had one brady (of course when I wasn't in the room) but overall, was doing great. His heart rate was staying low and I was a little concerned. So was his nurse, but she talked to the NP and they said as long as he wasn't breathing really quickly, it was fine. I think his body was just adjusting to the new way of breathing.

I opted not to hold him much just to let him rest. He seemed pretty peaceful, so I just talked to him or sang to him so he knew I was there. If he'd have fussed, I'd have held him, but this way he could adjust w/o the extra stress of being out of bed and moved around. I gave him a bottle feeding and held him a while earlier in the night, at least.

They've decided he can have 2-3 bottle feedings/day. And.


I can start nursing once a day!

So the big plan for today is that he will get his first shot at breastfeeding.

We have our favorite nurse this weekend and when I called this morning to check on him, she said her plan was to get me to nurse today. She'd already talked to the lactation consultant to make sure it was okay if she (our nurse) did it instead of the LC and it was fine.

So I'm excited! Nervous as this will be my first shot at this, but excited. I hope it goes well. The bottle feeding is going great, so hopefully that'll translate into a good experience here.

As for me, I'm going back to bed. I just got up to pump. I'm taking advantage of the fact that we have our favorite nurse today and I feel like he's in the best hands (that aren't mine, anyway) and getting some rest. I don't think I had more than 5 hours of sleep all week. I fell asleep at a stoplight turning into the hospital the other day. Scared the crap out of myself. Thank God I wasn't actually moving.

But work is done. Time to catch my breath.

Trish

Friday, August 15, 2008

Update

LAST DAY OF WORK!


Okay, here's the deal as I know it.
His physical exam is all fine. His belly is tender, he's alert & active, digesting his food well, maintaining his breathing well, etc etc etc.

The doctor says that 99.someodd percent of what they worry about is based on that. So because he LOOKS good, they're not terribly concerned.

These EO cells are perplexing. Basically, he says, they don't know WHAT causes them. He said they've been associated with a healthy growing preemie, associated with the beginning of an infection, associated with the end of an infection, associated with allergy.. associated with about 100 other things, basically. They just don't know. He said they've really just begun to study them recently and there are lots of theories, but right now, they just guess.

So he got plain, fresh breastmilk yesterday and will continue to do so for a little while. He's getting an antibiotic as a precaution. He seems okay.

Right now, the thing weighing on my mind is that he hasn't pooped. He had a very small stool yesterday morning, but my kid is a poop-every-time-you-change-his-diaper guy. i realize he essentially got water for a day, and they significantly reduced his food intake (from 22ml/2hour to 20ml/3hour) but still. It'd be nice to see things working. They say his bowel sounds are good, which is good, though.

As of this morning, his WBC count was down. But the differential wasn't back yet when I talked to them this morning, so we don't know about the specific EO cells. His X Ray wasn't read yet, either.

The pediatrician thinks it may be a milk allergy. So for now, I'm dairy free. We just wait and see.

I'm exhausted beyond words. The only thing getting me through is knowing this is my last day of work. Let's hope I don't get fired today for falling asleep with my head on the keyboard.

--Trish


P.S. Don't forget the thingy in the corner that we don't talk about.

Thursday, August 14, 2008

Thursday Quickie

Well, I don't know what happened, but I can suddenly get to my blog from work again. Who knows?

so a quickie update-

His WBC count was 13k. they said that's normal. Our Pedi said it's "high normal." When I pressed for what that means, she said that HER threshhold for normal is 13K, though a lot of people think it's more like 15k. or at least, I think that's what she said. Either way, it was just enough to keep me nervous.

At that point, the differential wasn't in yet. (the detailed analysis)
As of this afternoon, they said he had some eosinophils present. that's a type of WBC that can indicate infection or allergy. The doctor thinks it's a response to an imbalance of bacteria in his gut. He wants to feed him plain fresh breastmilk and see if that helps. The bacteria in fresh breastmilk should help rebalance things. If there weren't a supply of fresh BM, he'd get pedialyte again. Fortunately I'm able to keep up with his demand these days.

I took a few hours of appointment time from work and am headed to the hospital now. i'm officially 100% out of time off from work. This is unpaid time, which is fine. I have to get through 8 hours of work tomorrow, then I'm on leave. I've cursed myself about 32 times this week for not making last Friday my last day. Live and learn.

Keep praying. I'm scared to death, but they don't seem terribly upset, so I'm hoping I'm just being emotional and super-protective.

--Trish

Quickie

Extremely exhausted tonight but wanted to update. Sorry I didn't update earlier. Of all days for my job to add things to the firewall, it was today and it was blogger. So I couldn't update. Only 2 more days of work until leave, though. Thank goodness.

All his tests are normal. They did a complete septic work up and everything was good. They put him on pedialyte for today, will repeat the work up tomorrow. They also pulled all his meds and added an antibiotic for intestinal stuff just in case. If everything is okay tomorrow, he'll get straight breastmilk and then I guess we go from there.

Today went as expected. He even took pedialyte out of a bottle tonight. He took 25ml! He's only supposed to get 22, but they always add a little extra and he took it all. Probably because he's freakin' hungry.

Let me tell you, fortified water does not make a baby happy for long. He was extremely fussy tonight. He'd sleep for about a half hour after his feedings were done, then spend the next hour crying that super sad cry that makes your heart shatter in two. It also threatened to burst my boobs because I couldn't make myself leave him while he was crying, which meant no pumping, which lead to me nearly in tears around midnight because I was really hurting and he was upset.

The only thing that would calm him was his binky and if he sucked on his binky longer than about a minute, he'd drop his heart rate. I think he is so freakin' hungry that he was devouring the binky with so much abandon that he couldn't focus on breathing. I think he thought if he could just suck hard enough, SURELY some milk would come out of it. Poor little guy.

So, for now, we hope that tomorrow morning brings good news.

Oh- and Valerie- we've discussed the possibility of a milk sensitivity. I haven't been eating/drinking dairy for a few weeks now, but they've been having to dip into my frozen supply a bit when I was getting dairy, so it could be that.

But they also added calories to his milk on Saturday- putting it up to 27 calorie, which is extremely rich. I think it may have been that. He had those 2 diapers on Sunday night, and now this.

Our pediatrician did find two fissures. She's convinced that's what is bleeding. But apparently there was a pretty fair amount of blood this morning. Enough to make the nurse, NP & doctor think a work up was warranted. Our pediatrician thinks that she may have caused more bleeding when she looked for the fissures. She checked him at 7, the very bloody diaper was at 8.

I hope she's right. She called to check on him tonight around 8 or 9 and told the nurse to tell him she was sorry if she was responsible for all the people messing with his bum today.

Anyway, I'm off to bed. I worked a half day, then spent about 11 hours at the hospital. And he cried for probably that last 4 of that.

Trish

P.S. Down 10 grams, but you know- he (and the moose) get a pass today.

Wednesday, August 13, 2008

Worried

More bloody diapers.
He had 2 while I was there last night and they did an X-ray and said it looked fine. He's not "acting sick" at all. Everyone seems to agree that he has good color, good tone, his belly is soft, he has good bowel sounds, he's tolerating his feeds, his temperature is good. These are all things they look at and all of them are perfect.

The NP came last night after the X ray and found a small fissure. Okay, maybe that's it.

But when I just called for the morning report, the nurse was concerned. She said she changed his diaper 30 minutes ago and it was pretty bloody. So X-ray was coming agian, and they were doing some bloodwork. The NP was in again and she does see the fissure but doesn't see it actively bleeding.

It's possible that they've over-fortified his milk and it's just tearing his poor insides up. After the tests, they may discuss changing how it's fortified. I'm to check back in about an hour and a half.

I'm trying really hard not to freak out. I'm going to work very shortly. I only have to work a half day, so I can be with him around 2, but I think it's going to be a very, very long few hours. Please pray with me.

What's bigger than a moose?

--Trish

Tuesday, August 12, 2008

Long day

Remember back when Robbie was chronically pulling tubes? He was "that kid?"

Well, I think after tonight, I might be "That mom."

I'll start the story reassuring you that he's okay.

He had a fine day. No more blood in his stool. The pediatritian called this morning and I discussed it with her and her exact words were "There is NO WAY that kid is sick. He was WAY too alert & attentive." Her top theories were fissure or a sensitivity to something in my diet.


I worked a half day (using up the remains of my vacation time) and headed to the hospital. The afternoon was lovely.

He got his first bottle today. I didn't really give it to him. David and I were both there. At first I was upset that I coudln't give it to him- she insisted on teaching us how first. After she did it, I was glad she did. I'm not sure I could have done what she was showing me without actually seeing it first. He did great. He took 10cc w/o any trouble at all. (he only needed to take 21 total) When she handed him to me to try, the baby next to us started to act up a bit, so she went to tend to him. We waited. Robbie was a little fussy, so I calmed him and he went to sleep.
By the time she got back to try again, he was just plain ol' too tired to try. He took maybe 6 sucks of the bottle from me and then just didn't want to do anything else but sleep. It's hard work, that sucking, swallowing AND breathing.


This evening, we gave him a bath and afterward, I swaddled him up and sat down in a chair with him. he was sleeping peacefully, I was chatting with his nurse. We'd been sitting maybe 5 minutes or so, Robbie was sucking on his pacifier and things seemed fine. The nurse came over and looked down, then up. She said "oh, we didn't turn his monitor back on."

I glanced down and he was pale. Dusky, in my opinion. I stimulated him as she plugged him in.
Then the monitor finally came back on, his heart rate was lowish- about 110. And his oxygen saturation was showing 77. Neither of these things are particularly troublesome, though lower than they should be.

But I panicked. And I don't mean, I was a little upset. I mean, I panicked. What if his heart rate had been lower? What if his oxygen had been lower? What if we'd deprived him of oxygen.

I tried to reassure myself- he's rarely apnic for very long these days. Even if he does drift, he catches himself. But I couldn't shake the fear.
He was pale. That's all I kept thinking. He was pale.

She said he wasn't that pale. This isn't a nurse I know.. I wasn't very reassured.
I tried to settle myself. But I started to cry. Robbie was sound asleep and doing just fine. I hated that he was sound asleep. I needed him to cry or open his eyes and look at me to show me he wasn't brain damaged.

He's always really sleepy after his bath.

I tried to tell myself it was normal. But I couldn't help but fidget with him a little. Trying to make him mad. He'd stir a bit, but mostly just slept.

David was making small talk and all I could think was that I needed him to SHUT UP. It had nothing to do with him, simply that I was freaked out and I couldn't listen to anything.

Like how you drive around lost and turn the radio down? My attention was too focused on my panic.. on Robbie.. to be able to tune anything else in.

Finally I asked him to please stop talking to me. He was offended. I really did say it as nicely as I could, but there was no way around the fact that I was telling him to shut up.

So that lead to him lecturing me about how I'm a fatalist. He brought up the other day when I got upset for a nurse for turning his oxygen up too fast. I said that it could cause ROP and she shouldn't do that. Apparently, that was me saying he was going to be blind. NOW who's the drama queen? I explained that ROP wasn't the same thing as being blind, but that yes, there are actually signs all over the NICU saying not to turn them up more than 2-5% at a time, and she'd cranked him up 10 all at once for no good reason.

So I'm having a panic attack, and having a hushed argument with my husband all at the same time.

Finally I ended up essentially telling him that I might be a loon, but he knew that when he married me, so what of it? He didn't have much of an answer.

He was nicer to me, then, and shortly thereafter, he went home.

I stayed and stewed. The more I thought about it, the more upset I got. I suddenly thought I was going to be sick. I put Robbie back to bed quickly and excused myself. I went to the bathroom and dry heaved.

I thought I was over it.

I went back to his room and tried to sit. No luck.
I went to the hallway and paced. No luck.

I went back in and tried 20 questions with the nurse.

She insists he wasn't that dusky. If he'd been w/o oxygen, he'd have been blue and he wasn't. That he was breathing, but shallowly. She did everything to reassure me, but nothing helped.

I cried more.

I went to the bathroom to be sick again.

I decided I needed to get some new air, so I headed to the other NICU area to pump.

On my way out, a nurse I'm familiar with asked if I was okay. Not so much. I told her I was freaking out. I wanted more reassurance. She didn't really provide it. I pretty much got the party line of "we don't know how he'll do." She wasn't concerned about tonight, just in general, but it really didn't help my panic.


I got to a pumping room and couldn't bring myself to sit. I hit my knees instead.

I prayed.

Then I got up and came back to Robbie's room. The two nurses were talking about me. Nothing bad, just one of them telling the other what she told me. I felt bad because the 2nd nurse is sometimes the charge nurse and I wasn't "tattling." It wasn't about Robbie so much. It was about me freaking out.

When I said as much, they both reassured me that everything was fine.

Then I got asked about anti-anxiety meds again. Honestly, in that moment, I'd have knocked over an old lady for a Xanax. I promised to call the NICU support group.

I was still anxious, but was finally able to sit.

I couldn't pump. I just couldn't. But finally I got Robbie out of his bed and held him again. He was still sleepy, but he did finally cry a bit. He peeked his eyes open and looked at me. I felt better.

I put my chair back and actually managed to nod off.

The nurse came in to check on me again and we talked. I was finally calmer.

I held him for a while, fed him his mylanta and finally headed home around 1am. My eyes still burn from crying. My stomach is still upset from churning.

Robbie seems the same as he was yesterday.

He has a head ultrasound in the morning- routine. I'll be holding my breath until we get the results.

It was a long day. I'm tired.


Trish

Sunday, August 10, 2008

Sunday & Pictures!

+40 grams.

He's up on his oxygen a bit. He was at 32% when I left. That, in and of itself, isn't too concerning.

The blood in his stool was more troublesome. I changed a diaper shortly before his bath that looked suspicious. I wasn't sure it was blood and neither was the nurse. She said she's watch closely but wasn't concerned.

We gave him a bath. After he was all fresh and clean and had a new diaper on, he pooped again. What else would a baby do? So I went ahead and changed his diaper again. This time I was pretty sure it really was some flecks of blood. I called the nurse over again. She went and got his day nurse (who I know and trust) and she wasn't too concerned. They both thought it was probably a fissure. I asked her to tell the NP anyway.

She was in the middle of helping another baby with a bath, so she said she would shortly. So we went ahead and went to dinner. I hated leaving, but I promised the husband a meal together.

When I called back an hour later to see what the NP said, she said the NP wasn't too concerned either but they'd "keep a close eye."

If you'll pardon the pun- I hate this shit. I'm going to call very shortly to see how his midnight diaper change/hands on is. And I'll be talking to our pediatrician and someone else about it tomorrow. I realize he's done this before and that he's pooping fine and not showing any other signs of trouble, but I am absolutely an err-on-the-side-of-caution kinda gal. So I'm worried.

No one else seems to think I should be worried, but I am.

They did add more fortifier to his milk yesterday. Maybe it's too rich. I don't know.

They started him on some reflux meds today. He gets some mylanta before each feeding and some Zantac. The mylanta is given to him in a nipple so that it can coat his esophagus. He loves the stuff. I let the nurse give it to him today in case he didn't swallow it well. I took photos. He did great. He did desaturate a bit, but it was because he was sucking so hard & eagerly, that he'd forget to breathe. My little glutton.

Please pray that his guts are okay. Cue the moose.

Speaking of pictures... for your viewing pleasure:


A mommy's eye view:


Freshly bathed & glowing:




Who needs a cannula in their nose? It's tasty!


Grandma holds me for the first time:


Hey! You're not my mommy!


Gettin' the shot ready:


Hey, this eating thing is pretty alright:



Daddy settles me after my bath:




--Trish

Saturday

Quickie post because I can barely keep my eyes open.

+40 grams. We're not sure how incredibly accurate that is because he was so wiggly, but for now, he's up a bit.

They changed him from continuous feeds to q2- he gets fed every 2 hours. Basically, they're trying to see how his stomach and reflux issues respond to a full belly. He did spit a time or two.

The husband pretty much insisted that his mother hold the baby today. I didn't even bother to argue. It wouldn't have mattered that I was being logical about overstimulation, lots of changes in the last 2 days and whatnot. I'd have heard again how I'm just trying to keep his friends and family away from Robbie. Yes, that's me. A baby hoarder. Whatever.

He had to go up to 40% oxygen while she held him. He hasn't been on 40% oxygen in probably six fucking weeks. He was on 21% when we got there. He's in her arms and starts desatting. Nurse turns him up to 25%. No change. I decided to go pump because I was just getting nervous and we had a very good nurse I trusted.
I came back to the 40%. When I saw it, I flipped out. The nurse came to explain that she did it slowly but he needed it, etc etc. I wasn't flipped out that she did it unnecessarily. I flipped out that he needed it.

After my mother in law passed him to me, she turned him down to 30%. Then 25%. By th is evening, back to 21% with no problems.

But you know me. I'm just a baby hoarder. I just secretly hate all his friends and family and am plotting to keep Robbie from them. I couldn't possibly be in tune with my baby and maybe, just maybe, have a little more experience with babies than he does.

Anyway, enough bitching about the husband. Robbie is fine and that's what is important.

Oh, I also talked to our pediatrician today. She called just before I left the house. She'd been out to the hospital to see him. Apparently while she was there, his temperature was a little high so his heart rate was up a bit. The nurse had taken his hat off and such and when the doc called back to check on him, he was fine again.

I just enjoyed that she'd bothered to call back and check.

When I got to the hospital a couple of people mentioned what a good choice we'd made in pediatricians. Then every time it came up, the response was the same "ooooooh.. she's gooooooood." I stopped to chat with my NICU friend and told her that everyone had been responding that way. We were just generally talking about pediatricians when her nurse came over and asked who mine was. When I answered, she said "ooooooh.. she's goooooooood.." and NICU friend and I laughed. I definitely feel good about the choice I made.

Anyway, didn't get home until after 2. Robbie was just sleeping so sweetly in my arms that I couldn't bring myself to put him back to bed and leave. So now I sit here trying to hold my head up while I pump for the last time of the night.

Tomorrow I'll try to get some more pictures up!


--Trish

Saturday, August 9, 2008

Friday Night

A helpful reading sent some information about that thing that's in the right corner. She tells me that any request mentioning it will get my account pulled and I'd lose any income. Apparently you can get away with a little stuff like thi.s. So if you see me typ.ei.ng li.ke thi.s, you'll know why.

I know lots of bloggers type things like pen.is or ultr.a.sound so that they're blogs aren't found so easily when searching for random terms, but I never bothered because I think it's funny that people are looking for po.rn and instead find my blog talking about spotting & transvaginal ultrasounds. But I guess I'll join the crowd.

In that vein- it's working. Apparently just pa.ge vie.ws count, cl.ic.ki.ng counts more. And I think buy.ing even more. So just reading every day is good.

...


I'd like to thank the lovely Mrs. Spit for sending me a care package. She's an amazingly talented knitter and sent a very cute hat and matching socks, but the funniest part of package was an actual Canadian Moose.

Behold:


Lookie, Moosey has a band on his leg just like me!


Halp! Moosey try to eat me!




Yeah. I know. He's adorable and perfect.

Anyway, I guess my trip to visit the charge nurse last night paid off. We got moved to the new unit today. It's a brand new area. It was actually just opened when Robbie was 2 days old. Eventually all the rooms will be single family rooms but because it's being opened in phases, right now they have as many as 4 babies in each room. So it's a bit crowded, but still very nice.

This unit actually has a bathroom! And a waiting area! What will they think of next?

At one point, I was actually ALONE with Robbie. Well, okay, we had 3 other babies in the room with us, but I was the only adult. The nurse was just on the other side of a sliding glass door, but still. For just a moment, it was just Robbie and me. It was so peaceful. He's 9 weeks and 6 days old and it was our first moment that felt private. I didn't even realize how much I craved it until then.

We're in a room with some familiar people. Our old neighbor from the other side of the hospital. The one with the parents that are as pushy as me. And our neighbor from the previous room. Now if we could get Robbie's girlfriend in our room, it would be perfect.

The best part is that because one of those babies has a primary nurse whom I like, that means she's sort of our primary my default. We're on a team, so if she's his nurse, she's ours. And if we get a primary or two, it'll benefit them as well. Things are looking up.

Oh, and speaking of up- he did gain a whopping 6 grams tonight. Not a ton, but at least it was in the right direction. They added yet more fortifier to his milk today upping his calories again, so maybe he'll go up. They went down again on his air flow- 2 liters. They had put him back up to 3 liters for a bit tonight because he was desatting a bit, but she was going to turn him back down again after we were gone and he was settled.

I was able to get Robbie set up with the pediatrian. And I scheduled my DECIDA scan for my liver/gallbladder/whatever thingy. A week from Monday.

We're moving in the right direction.

--Trish

Friday, August 8, 2008

Decisions Cont'd

-20 more grams. I told him that's it. No more loss allowed.

Prepare the moose.

It was a hard day. I guess I've just reached the point where I'm tired of NICU life.
I'm tired of sharing my son. I'm tired of having to schedule time to hold him. I'm tired of waking up in the morning and wondering if I can trust the person caring for him.

A friend sort of dismissed by need to take a leave the other day saying that women leave their kids all the time. I explained that she got to pick her baby sitter. Some days I've never even MET the people caring for Robbie.

I came in to Robbie doing well. He was on room air at 4 liters. I went to pump and when I came out, he'd been desatting a little. (no lower than 82%) She'd bumped him up to 30%. I asked my husband if she did that all at once- yes. That infuriates me. first of all, small increases are recommended. The rush of oxygen is bad for his eyes. We've been very fortunate so far that he has no signs of ROP (retinopathy of prematurity), but he's still at risk. Secondly, it just isn't necessary. Probably 23% would have done the trick.

I had a good loud rant about it. My husband looked at me like my head was spinning around. I didn't care. I'm just so effing sick of people not doing what is best for him.

After I finished my rant, then cried for a minute, I walked down to the old NICU and found the charge nurse. Turned out to be one of my favorite nurses in the whole NICU. She LOVES Robbie. As soon as she caught site of me, she exclaimed "HOW'S MY FRIEND ROBBIE?!" I told her he was doing well. She asked how I was and I started to cry. Again. (Seriously.. there WILL be a day I don't cry, right?) I told her I was exhausted and tired of the lifestyle and what would help is if we had some primaries. What do I need to do?

She was very sympathetic. So we discussed a few names and she's going to work on it. I told her she'd be high on my list but of course, she can't because she's charge nurse a lot. She said she tries to make sure he gets the best care from afar but she'd love to take care of him. She's the nurse who made me cry happy tears one day because she stood and soothed him for at least 30 minutes when he was upset. I'd never seen one of the nurses take any real amount of time to actually comfort him. I could have kissed her straight on the lips that day.

So, the ball is rolling for primaries. Wish us luck.

As we were standing there, I saw my beloved Dr. C. He'd offered to help us choose a pediatrician and I had a list so I snuck over to see him. He was with a woman who looked like a professional-type, so I just tapped his shoulder and asked him to come see me later. He excused himself from the lady and asked if everything was okay.

I told him it was no big deal, I just wanted to discuss pediatricians and to just find me when he had a free minute.

He got a funny look on his face and I inquired what he was thinking.

He turned back to the lady standing next to him and said "Let me introduce you to my friend here. This is J. P. She's my children's pediatrician."

Sometimes the Lord works in mysterious ways and sometimes he's a bit blunt, eh?

So I shook Dr. P's hand and introduced myself. I asked if she took GHP insurance. She does. Dr. C told her a little about Robbie. ("He's done very well. No major setbacks. But he has awful reflux.")

Dr. C came to find me later. He went through my stack of doctors (one doctor per page) one by one. I couldn't help but laugh because while he stopped short of saying anything bad about anyone, he'd occasionally get one and say "I don't want to be rude, but we're just going to throw this one away, okay?" He went through each of the practices and picked the doctor that he thought would suit my personality best. A few he said he didn't think would have good chemistry with me. A few he just gave me the look that said you don't want that one, trust me.

After he finished my stack, I asked about the doctor I'd just met.

He replied that he had to warn me that he's not objective.

Turns out that Dr. P is one of his oldest friends. They were in residency together. She's godmother to one of his children. He adores her.

He explained a bit about how she works. One thing that I really liked is that she rounds on the babies. Even though Robbie isn't released yet, if she were his doctor, she'd come see him every day. She's apparently quite big on the individual attention. Sounds good to me.

He told me not to feel any obligation to choose her, I had lots of good choices.

I said that I knew a sign when I saw one. I just HAPPENED to find him to discuss pediatricians when he had one standing with him? Some people see coincidences. I see divine intervention.

So I called the office today and made the arrangements. Robbie now has a pediatrician.

I also picked his brain on the vaccine issue. I brought up the mercury/aluminum/autism worries. He pretty much said that HE is completely comfortable with Robbie getting them now, but that if it would make me more comfortable to wait until he's 4-5 pounds, he has no problem with that at all. He doesn't think this is an issue that should cause me more worry. If waiting a little longer would lessen my worry, then by all means, wait a little longer.

Have I mentioned how much I love him? I do.

When I called to check on Robbie today, they'd turned his air volume down again. Three liters now. I was surprised since they'd just turned him to 4 liters yesterday. I guess he's doing okay.

We just pray it keeps up.

Thanks for everything. That thing we aren't discussing is already paying off.


--Trish

Thursday, August 7, 2008

Decisions

According to a helpful commenter, I'm not supposed to encourage the.. uh.. attention to..the.. err.. thingamajiggy that might or might not be now located on the right top side of a certain someone's umm... journal.

So.... please pay no attention to the man behind the curtain.

Have I mentioned that Robbie needs diapers? *cough*thanksforcli.cking*cough*


In other news:

-61 grams.

It's mostly okay though. I'm not going to lie and say I didn't catch my breath when I saw the weight come up on the scale tonight, but I also know that he peed a TON and looks way less puffy. The nurse said we should call this a "dry weight." Okay fine. But the moose better be nervous.

Also- today they wanted me to sign my permission to give vaccines.

Now, I'm totally pro-vaccine. I made endless snide comments about friends of ours who refused to vaccinate their kid. But now that it's MY kid - my 3 lb 6 oz, fragile, tiny, perfect kid- I find myself swallowing hard. Yes, I want him vaccinated. But do we have to do it noooooooooww?

The day nurse acted very matter of factly about it. She was willing to answer any questions, but you could tell she just assumed I was going to sign right then and there.

The night nurse was pretty much the opposite. She wasn't encouraging me NOT to sign, but pretty much insinuated that I could make a fancy tin foil hat for her as well.

I asked to speak to the doctor. It was the doctor who delivered Robbie- the director of the entire NICU. He fell closer to the day nurse. He needs it, let's do it, what's the problem?

I asked if maybe we shouldn't wait until he was a little bigger. He admitted that he wouldn't mind if Robbie were a bit bigger. Perhaps we could wait another week or two. Maybe he could gain another half a pound, maybe a whole.

I think what I want to do is wait that time, then space them out. They give them over 2 days now. Maybe we could make it a couple of more. I don't know. I know they took the mercury out of the stuff these days. But I have a couple of friends with children on the autism spectrum and I think they'd encourage me to be cautious. And I think that's wise.

So that's what I'm mulling tonight.

I'm off to find some tin foil. And feed the moose.


--Trish

Wednesday, August 6, 2008

Wednesday

-21 grams, but it's okay.

They gave him a diuretic yesterday because he was retaining so much fluid. He's been retaining the fluid for some time- we knew that. But I guess his day nurse yesterday thought we should go ahead and do something about it. The NP agreed and everyone agreed it might help his breathing as well. Not that his breathing is going badly- quite the opposite, really, but help is always good.

Anyway, they gave him the first dose about 4 in the afternoon and when I changed his diaper about 8, it weighed a TON. The whole thing was soaked. The nurse weighed it and said it was 70cc. She was impressed. Later in the night, two other nurses heard us discussing his weight loss and they were sort of reassuring me and I told them it wasn't necessary because I knew it was fluid. Then nurse told them about the diaper and they were impressed as well. Since I have no idea how that compares to anything else, it means nothing to me, I just never know I've never seen or felt my son have nearly that much pee in a diaper.

Our holding time went much better last night. So did my evening with his nurse. The baby next to Robbie was quite fussy so she was spending a lot of time holding/rocking/consoling her, which sort of kept her from hovering over me. A couple of times she commented that she could get another nurse to help me when I was getting him out of bed, putting him back to bed etc. I didn't really need it and she finally seemed to realize that I do actually know what I'm doing for the most part.

As annoying as it is for her not to trust me to take care of my own kid, it is also reassuring to know that she really wants to take care of him. I trust her when I'm not there. That's really all I need out of a nurse.

Soon, I'll be able to be there more. My leave of absence was officially approved. I went ahead and put in to finish out this week and next. I have a little bit of vacation time left that I'm splitting into half days and using in the mean time. So I'll work 4 hours today, Friday, next Monday & next Wednesday, 8 hours each of the other days through next Friday. Then I'm off.

I put it in to return to work April 1st. I don't really think that money will hold out that long, but the leave can only be changed once. So I can come back earlier if we run out of money, or I can stay out longer if we have a sudden windfall.


To all of those who gave suggestions on ways to earn a little extra cash- THANK YOU. I'll be checking into all of them.

I'm also going to allow some a.ds on the blog. I really hate to do it because I like my a.d free space here, but at this point, function beats form. Would all of you who read regularly be willing to cli.ck on my a.d once a day? Would it be completely obnoxious to add a little P.S. to each post to say "Psst, please cli.ck my ad?" Even if it's an extra 20 or 30 bucks/month, it's something. Let me know what you think.

Off to the primary care doc about my gallbladder/whatever. Just a follow up to say that the drugs haven't helped. Hopefully she'll go ahead and schedule the scan of my stuff and we can get this show on the road. If I am going to require surgery, I'd REALLY like it done before Robbie comes home. It'd be just my luck that they'll schedule surgery and then let Robbie come home the same day or something.

--Trish

Tuesday, August 5, 2008

Something's gotta give

The quick and dirty is that he gained 21 grams again today. No other changes, really.

He was fussy as crap tonight, though no one can really figure out why. I think he's gassy, they say his belly feels fine. I still believe my intuition over their belly poking.

I did not like either of his nurses today.

I slept like 5 hours.

All I ate today was a bowl of oatmeal.

Why do I share this?

Because I'm tired. And sad. And frustrated. And maybe a little angry.

His day nurse answered the phone with the tone that said "WHY ARE YOU BOTHERING ME?"

She answered the phone and when I told her who I was, her reply was "Yeah?" That is not an acceptable answer to me.

Turns out she's the nurse that my NICU friend (Robbie's girlfriend's mom) actually requested never to be assigned to again. I can tell why.

She was nice enough when I got to the hospital tonight, but David said that when he got there, Robbie was crying and of course no one was doing anything. His blood pressure on the screen (taken early in the morning) was way higher than normal. Usually that only happens if he's REALLY ANGRY when you take it. I can't help but think she'd gotten him hysterical and not given him a chance to calm down. And my friend says she had a preemie, so she should fucking know better.

His night nurse seemed nice and was certainly paying close attention to him, but I think I offended her. I had never seen her before and when I said as much- really just looking to get to know her- she instantly launched into how she'd been a NICU nurse for 23 years and she was very capable. I don't think she meant to sound defensive, rather was trying to reassure me, but I felt like we both walked on eggshells around each other after that.

The weekdays are so hard because I can't seem to put in less than a 17 hour day. And that's just from leaving the house to returning. That doesn't count the time to pump, pack all my shit & get ready in the mornings, or the time to pump, clean & sterilize everything at night. The alarm goes off at 7, and I'm rarely in bed before 2.

Work just pisses me off. I'm barely productive at all. My mind is just too easily distracted and then I rather dislike my new boss. She gave me a ton of crap about pumping at work and it wasn't until I basically threatened (sincerely) to call a lawyer that they shut the hell up about it. I feel no loyalty to the place at all. I'm normally a very loyal, hard-working, responsible employee, but it's gone. I just can't give a shit about phone service right now.

And eating. Well, eating sucks. My gallbladder/whatever issue isn't improving. I'm in some measure of discomfort almost constantly. And if I eat the wrong thing, it hurts bad enough to wake me up at night. I'm tired enough w/o losing sleep over this crap, so I've been mostly living on organic applesauce, Special K cereal bars and mashed potatoes & gravy from the hospital cafeteria. I ate some oatmeal today and felt just plain weird all afternoon & evening. I swear I can feel the damned thing in there spasming. I've lost something like 12 or 13 pounds in the last 2 weeks. Not that I don't have the extra weight to lose, but this is not a healthy diet. I'm fucking HUNGRY.

I see the doctor again on Wednesday morning to see what the next step is. At this point, I've begun begging the husband to just reach in and pull the damned thing out himself. The doc thinks it could be an ulcer, gastritis or just plain so much stress that I'm producing so much stomach acid that it's eating my guts all the way through. And while all of that would certainly make sense, the pain is so squarely right where my gall bladder is that I can't help but believe it's that.

And I think all of this has lead to just a general feeling of....unhappiness tonight.

Robbie had a couple of bradys tonight. He was fussy before his bath, and then finally settled in just in time to get him up to bathe, of course. So after his bath, I let him sleep for 2 hours and just chill out. He was doing fine. I got him out of bed and was holding him. He seemed content, but his oxygen saturation was just sucking. She checked him very thoroughly and couldn't find the problem and finally I just put him back to bed.

Then I cried.

She turned his oxygen up just a bit (from 21% to 25%) and he was doing much better, but then he had a couple of heart rate drops that just didn't seem to relate to breathing. I'm assured this is fairly normal for a preemie, but it still sucks. And knowing that he does better without me than with me sucks, too. So I cried a little more.

On my way out of the NICU, I called David. (He'd left before bathtime to come home and work on Robbie's room a little.)

I'm going to put in for my leave at work. I feel guilty about it. I could probably work as much as 4 more weeks and earn more money to stay off longer when Robbie comes home. But I'm just not functioning well.

Add to all of this that ever since we moved to the step down unit, I've really only seen 1 familiar face so I don't feel like we're getting any continuity of care at all and I just can't take it.

We can't seem to get the Primary Nurse thing figured out, so the only primary anything he has is ME. And while I'm spending 6 hours a day there, it's just not enough. By the time I get off work, across the city through traffic, it's nearly 7pm. Bath is at 8:30. So I can hold him for an hour.. maybe two if I get there around 6:30. After his bath he just seems to need several hours to regroup. So that's it.

And it's not enough.

Right now, we've got enough money in the bank that I think we can manage 4 months off. If we can get a decent enough tax refund at the beginning of the year, we can probably swing another 2. Maybe even 3. My job will pay for our benefits for 6 months.

So I'm putting in for my leave ASAP. I don't know how much notice I need to give, but I'm aiming to finish out the week and then be off. No more than the end of the next week.

Now I just wish I had some saleable skill that I could do from home.

I saw some earrings made from dog hair on etsy the other day. I'm off to find my cats..


--Trish