Friday, February 27, 2009

Calling all infertiles

A friend came across this posting on Craigslist. I make no claims about how legit it is, but I emailed. Who can't use a free $25?

Remember: I make no claims about this so if it turns out to be a scam to get our phone numbers, I'm sorry!


WEGO Health (http://community.wegohealth.com) is a new consumer health website and we are holding focus groups on Thursday, March 12th for women who are having trouble trying to conceive, or have had experience with fertility issues.

Focus groups will be held at 12 Noon Eastern Standard Time, 4pm EST, 6pm EST and 9pm EST.

Please note: These groups will take one hour and are held remotely. Participants can join from anywhere in the country, but will required to be online and on the phone at the same time.

All participants will receive a $25 Amazon.com gift certificate.

We are looking for women who:

1) Have explored fertility treatment options.
2) Stay current on fertility news and treatment options.
3) Are active contributors to online health communities.

Not sure if you’re an active contributor? We’re looking for people who participate in online discussion forums, question & answer sites, blogs, Twitter, etc.

If you are interested, please email services@wegohealth.com and include the following information:

1) Your name
2) Your phone number (there will be a brief phone screen)
3) Where you participate online (names of websites, online communities, etc)
4) Times (Noon EST, 4pm EST, 6pm EST, or 9pm EST) that will work best for you. Please list your top three choices. Please note, all times are Eastern Standard Time.

Surgery update

The surgeon called this morning.

The bad news: Robbie's hiatal hernia is back.
The good news: Robbie's hiatal hernia is back.

This is bad because obviously it changes the surgery. Instead of being a 10 minute outpatient procedure with no stitches, it's a 90 minute inpatient procedure with lots more details.

The doctor said that because Robbie's stomach is attached to his abdomen from the gastrostomy (remember that yesterday this was a good thing) it will be more difficult to work around. He may have to actually detach it, do the hernia repair and then reattach it. He'll try to avoid that but the most important thing is to fix the hernia as well as possible.

He said that it's common for them to recur and particularly because Robbie was so small when they fixed it the first time (less than 4 lbs) there wasn't a lot of tissue to work with. Because he's much larger now, there is much more tissue and he has a far better chance of permanently repairing it.

All of this is good because it certainly explains why Robbie doesn't want to eat. It explains not just his discomfort but the fact that he eats a small amount and stops. What is likely happening is that he eats a bit which causes his stomach to distend upward into his esophogus, which hurts. And he's done. Who can blame the kid?

It's entirely possible that just like last time, he'll wake up from surgery and be starving. Of course, he's much older now and has learned the eating = pain, so he might not. The G tube will go in anyway just in case.

Just like last time, if he does return to eating and growing fantastically, it can always be removed again. (Though I'll probably be far more hesistant to do so right away this time.)

It also means he'll be under anesthesia longer, which of course means I'm more nervous. It's still not anticipated to be a problem, but they will try to get him awake as soon as they can. The surgeon said that if things go easily it may be as quick as an hour but if he has trouble working aroung the gastrostomy, it may even take longer. As he told me last time, "It's not a race. It takes as long as it takes to do it well."

We will be staying overnight. The doctor said that if it got to be about 10pm and we were fed up with the hospital and just couldn't take it a minute more, we could have the nurses call him and he'd discharge us, but he will need to be observed for a while after the surgery because his feedings will be held a while. We'll likely to go ahead and stay the night and go home the next morning. By now we're certainly used to the hospital life.

As always we could use prayers. Pray that the surgery goes smoothly and that the hernia repair is completely successful this time. And pray that this is truly the answer to our eating woes. For the first time in months I feel like we might really have hope that he might be able to eat normally.

The difference last time was profound. I'd love to see that again.

--Trish

Wednesday, February 25, 2009

Scheduled

Robbie's surgery will be next Tuesday, March 3 at 11:30am.

The surgeon thinks it will be especially easy because he believes his stomach is still attached to the abdomen from having the G tube previously. He said he likely won't even need stitches and will be able to go home the same day.

He doesn't anticipate the lengthy recovery time of last time because Robbie's older and willingly breathes on his own now.

I told him I'd pack a bag just in case and he thought that was a good idea.

He sent us to radiology for a repeat upper GI to make sure his hiatal hernia hadn't recurred. If it has, that would obviously change things a bit, but hopefully it's just a 10 minute procedure with minimal pain.

I feel a little better today than I did yesterday. I really like the surgeon (and he comes HIGHLY recommended) and he did calm my fears a bit.

Now we just need it over with.

--Trish

Random Thought Tuesday

I'm already getting that sick, anxious feeling worrying about something going wrong with Robbie's surgery. It's not even scheduled yet.

...


I'm also already salivating thinking about a free ICEE and Caramel Bugles from the cafeteria.

...


The Salma Hayek breastfeeding video made me sob. I'd heard the story but not seen it. The other night they showed it on ET or something and I burst into tears. It took me a little while to figure out why. It was the look on the baby's face. 1) He looked so content to be at the breast and 2) He was actually EATING.
I grieved a little that we didn't get that.

...


Talked to my pediatrician today and she told me that my beloved Dr. C asked about Robbie today. I knew he loved me as much as I loved him.

...


I have started to refuse to read anything regarding the Octuplet mom because it seriously pisses me off so much. It was bad enough until I read "Everything turned out so perfectly" and every time I think of those babies in the NICU I want to punch her in the face. My blood pressure is rising just typing about it.

...


We're really want to sell our house and buy a new (cheaper) one. Selling our house in this market really stresses me out.

...


I must think "I should post about this" about a hundred time a day, but now I can't think of any of the things that I randomly think I should mention.

...


I should go to bed.


--Trish

Monday, February 23, 2009

Raspberry video and gtube

video
Robbie is just learning to blow raspberries. what he's really accomplishing is slobbering A LOT. I hope this video uploads bright enough that you can see him doing it.

We had our follow up with the doctor today. We see the surgeon on Wednesday and will schedule the G tube placement from there.

Today's appointment was actually with both the nutritionist and the NP in the GI's office. They both feel that the G tube won't be super long term. Because he took so well to solid food, they think that once he reaches the point where most of his calories can come from solids versus milk, we will be able to get rid of the tube.

They said their plan is that as soon as the tube goes in, we're working on getting it out.

He weight 10 lb 13oz at the office today. I had actually fed him on the way to the doctor, so that was a little heavy. I weighed him on the home scale tonight and he was really 10lb 10.5 oz. That puts him up 11+ oz in 2 1/2 weeks. Considering he only gained 5 ounces in the month preceding that, it's obvious that things are going better.

For now, please pray that the surgery goes smoothly. I'm really nervous about it. He took 3 days to wake up from the last one.

There are many reasons this should go smoother.

-He's almost triple the weight he was then
-the surgery is about 10 minutes versus the 2 1/2 hours previously
-we know he reacts strongly to the anesthesia
-he's having way less done so he'll require way less pain medication afterward.

but I also know anything can happen.


--Trish

Sunday, February 22, 2009

Weekend update and interview take II

Sorry for the quiet. Not much to report. My mind goes non stop but nothing seems to be forming into real thoughts.

Robbie's eating has gotten worse again. He's down to averaging about an ounce and a half. Still miles better than it was before our hospital stint, but also miles from where it needs to be.

We have another follow up appointment tomorrow. I suspect we'll be schedule the G tube surgery then.

He has gained some weight this week. I have a scale at home and I believe he's right about 10 lb 8oz. We've been adding ProSobee powder to my breastmilk for calories. Obviously it's working, but it's pissing his reflux off something fierce. We'd actually gotten to where he was spitting maybe once or twice a week to now back to several times a day. And he seems uncomfortable. It's something we'll discuss again tomorrow, I'm sure.

I have such mixed feelings about the G-tube.

I do feel like we have exhausted all other options at this point. Clearly if he gets enough food, he gains weight. Developmentally he's made some great strides in the last 2 weeks (pushing up more, nearly rolling from back to front, more language developments, more hand-eye coordination) that I attribute to proper nutrition as well.

But DAMN IT, I HATE THAT HE NEEDS IT. I dread the surgery. I hate that he needs to be knocked out again. I'm still traumatized from the 3 days it took him to wake up last time. And I hate that he'll be in pain. And he's going to have HOLE in his STOMACH.

Plus we've been down this road. I remember the constant leaking. The worry about catching it on his clothes and hurting him.

And there is the "freak factor." In the summer if he is shirtless, people will see it. I hope to get him in the pool in the summer time. And I hate that people will likely whisper and wonder. Every mom wants their child to be normal. And mine isn't.

Of course, then I feel guilty about that. It could be SO much worse. If the worst effect he has from being born 14 weeks early weighing less than a pound and a half is a plug in his side, we are truly, truly blessed.

But I still hate it.

So there's where we're at. Getting by and preparing for the future. But we're doing okay.

On a more normal note- the last few days I've been working on sleep training.

He goes to be quite easily. He has for a number of months, really. He gets drowsy, you wrap him up and lay him down and he's out. Even if he's not terribly drowsy, you lay him down, he watches his aquarium and eventually nods off w/o much fuss. But 20 minutes later it begins. He needs his paci and/or some patting. He nods off again. 15 minutes later we do it again. This lasts anywhere from a half hour to (more frequently) 90 minutes. It's exhausting.

Since he's nearly 6 months adjusted now, it's high time he learn to self soothe a bit. So I'm giving it a shot. Last night I let him cry it out for 5 minutes, then soothed, then cried for 10 minutes, then soothed again and he was out.

Tonight was a little odd because he got really sleepy much earlier than usual, but too close to bedtime to really let him nap.

He fell asleep almost immediately and 20 minutes later he fussed just the tiniest bit. I sat next his bassinet and shushed him for a minute and he settled right down. He didn't stir again for an hour when it was time to eat. He ate and cried for about a minute or so- but I think I attribute that to objecting to food in his tummy more than anything. I patted him just for a minute, told him goodnight and he settled down. That was almost an hour ago, so I think he's out.

That's pretty painless so I'm sure we have harder days coming. But hopefully it goes well. Once he's out, he's a GREAT sleeper. He gets up to eat and goes straight back to sleep. Often he barely even opens his eyes to eat. On the rare occasion he wakes up really perky, he usually just stays up long enough to eat and I can still lay him back in bed and he'll talk to himself until he nods back off. I'm really lucky in that regard. (Lord, I never thought I'd see those days after his first weeks at home.) And he typically sleeps at least 10 hours at night, sometimes approaching 12.

He still naps like crap, but I'm tackling one thing at a time.

That's the state of our house for now.


Now..as promised, I'll answer some questions:

Fertilized asks:
If you were a tv character, Is there already a tv character you would want to be, or would you have to write a script for your ideal tv character.

My favorite TV character was Veronica Mars. I LOVED that show. She was a strong, smart girl being raised by a single dad after he mom took off. I saw one episode before I called my dad and insisted he watch it. He was instantly hooked as well. i identified a lot with the character, so if I were to pick one, it would be her.


Anonymous wrote:
how do you deal with the fact that your husband seems to do nothing but aggravate your frustration? Seriously, he sounds like he is at his breaking point and needs a kick in the ARSE. Want me to do the deed?
I admit this one made me laugh.
As for how I deal with it? I generally go with passive aggression.
In all honesty, David has improved greatly in the last few weeks. He still slips on occasion, but he has gotten much better.
I think we hit a crossroads a few weeks ago when we had a serious discussion in which he admitted that he feels a bit like a 3rd wheel when it comes to Robbie and me. He said it in an almost accusatory way. As though I made him feel unneeded and unwanted. I asked him to tell me HOW I make him feel that way.
After a lot of hemming and hawwing, he finally conceded that I don't. He just feels that way on his own.
From there we discussed things more calmly and I offered a few suggestions of things he could be doing to be part of Robbie's life.
And it's made a difference.
It also helps, I think, that Robbie is more and more interactive. David still seems genuinely surprised when Robbie smiles at him. (Which he does every time he sees him. He ADORES his daddy.)
As for how we got through the roughest patches- A combo of perseverance and laziness. I knew I'd never give up easily on my marriage. And most days I was just too tired to fight about it. And eventually things started to improve.
Of course sometimes I still want to strangle him. We are married, after all.
But just last night David actually got up and took a middle of the night feeding. I won't say it went smoothly. I was up the entire time as well, but at least he offered and followed through.
And I'll keep you in mind the next time he needs a good ass kicking. Thanks for the offer.

Tracy asked:
When you finally get out of your cold and flu season isolation, what is the first place either special or mundane that you want to go with Robbie?

The zoo. St. Louis has a great zoo. And it's free! And it's one of my favorite places on Earth. I can't wait to take him! I hope he loves animals as much as I do.

Adriane asked:
What book would you be reading right now if you had the time?

Well, I had an answer to this because I've been working on one for a few weeks but I actually finished it the other night. (I gave up sleep to read a while. I ALMOST regretted it in the morning, but it was so nice to do something for myself for once that I decided it was worth it.) I was reading "Fearless Fourteen" by Janet Evanovich. I LOVE mysteries. If they're mixed with humor, even better.
As for what my next choice would be- I'm not really sure. I don't have anything lined up just yet. I tend to get hooked on series because when I find a character I like, I want more-more-more. I'm open to suggestions!


OSB asked:
Does time really help like everyone keeps saying? Has having Robbie helped ease that pain? Do you think that you will do something special on birthdates/miscarriage dates? Any other advice for dealing with the loss?
I considered emailing you directly this week but decided I wanted to answer this publically.

Does time help? Yes. It does. And sometimes it hurts more than others.

Does having Robbie help? Yes, it does. For a couple of reasons, really. The biggest being that I'm just so busy caring for him that I don't have time to be sad too often for too long.

Secondly because I know that had either of my first babies survived, the chance that Robbie would here is very, very slim. And I can't imagine my life without him. I would never say that my losses were meant to be but simply that the sorrows and sadness were not in vain.

As for doing things on loss dates, I haven't done anything tangible. I do think of them quite frequently. And when I want them with me, I wear my rememberance necklace.

The last time I wore it was to my baby shower back in September. And yes, I was sad. At the end of my shower, I mentioned to a friend that I was wearing it and I cried. I do miss them. And nothing will ever stop that pain.

One of Robbie's NICU friend's dad told me about his family. His mom had 15 children and 6 miscarriages. One of her children had down's syndrome and lived only a few months.

He said he asked his mom one time how she'd survived so much sadness. Her answer was that every child is a gift from God. Our job as parents is to love them while we have them. Maybe that would be a few weeks or maybe it would be many years, but we had to love them while we could.

Those words have resonated with me so strongly. I spent almost my entire pregnancy with Robbie trying not to connect to him. I was so afraid to love him because I was afraid I wouldn't survive losing another.

When I was admitted to the hospital and was facing the very real possibility of doing just that, all I could think was that I had wasted so much time NOT enjoying him. I was suddenly terrified he'd die and never feel loved.

I spent those last days listening to lullabyes and singing to him because I was afraid he would die and not know that I had, indeed, loved him. That morning before he was delivered, the tech who came to take my presurgical lab work commented on the song that I had playing over and over (For Baby by Peter Paul and Mary)and I just sang and cried and cried and sang.

Later, I sang that song to him in the NICU probably a thousand times. When I couldn't hold or even touch him, I sang so he'd hear my voice. So he'd feel loved.

It was all I could do to fulfill my job- to love him.

That's all I can say for how to cope. Know that you loved your baby while you could. And that's all God asked of you. I'm so incredibly sorry for your loss. I wish I had something more comforting or profound to offer.


--Trish

Monday, February 16, 2009

Interview

The latest bloggy trend is an interview. I thoroughly enjoyed Mrs. Spit's interview (though her questions were HARD) so I decided I'd go for it. Fortunately she took it fairly easy on me.


1. No woman over 35 should wear a mini skirt, yes or no?
Well, before I hit my 30s, I probably would have said NO WAY. But as I've gotten older and become less concerned about body stuff, I guess I'd say if you've got it, flaunt it. But you better HAVE IT. I do not. So you will not be seeing me in a mini skirt.

2. Grapes or raisins?
Can I have both?
I love fresh green grapes to snack on. But I love raisins in my cereal and in oatmeal cookies. I particularly love those pillsbury place-n-bake cookies.
I used to love the ones from the cafeteria at the hospital but one day one of them came with a side of hairball and thus ended our love affair.
(Yeah. I was gagging in the NICU. It was pretty awful.)



3. What's the deal with Icee's?
Well, you see, Icees rule. They're cold and sweet and yummy. They are superior, in my opinion, to Slush Puppies or Slushees because the ice is ground finer. There is something out there called a Tropical Sno which is finer, even, than an ICEE, but they're seasonal and harder to come by.
And of course, the fact that the Icees at the hospital were FREE, well.... there's no contest.



4. In the Toby Award I gave you a few weeks ago, I suggested that you had real courage. How do you feel about courage now?
Hmm. This was a hard one.
Mrs. Spit wrote, "Albus Dumbledore was quite right, there are many varieties of courage. One type is to get up every morning, knowing that it is going to be hard."
And I suppose if that is, indeed, courage, then I suppose some days I am courageous.

But I must say that with the challenges that come with my daily life, I have so, so many blessings to ease the pain.

To me, Mrs. Spit is far more courageous. She lost her precious Gabriel to the evil syndrome that threatened to take Robbie. And she still faces each day with kindness. She still reads my blog every day. She comments frequently. She emails when I'm at my lowest and truly lifts my spirits. She calls me and makes me laugh when I'm sitting in the hospital considering homicide if ONE MORE PERSON wakes my son.

Me, I feel like I'm muddling through complicated circumstances. But I got my miracles. If I were to wallow in self-pity for very long, it would be a slap in the face of all those who didn't get to bring their babies home.

Yeah, sometimes it sucks. I mean, sometimes it REALLY sucks. Sometimes I do wallow. Why, oh why me. Why won't MY son eat? Why won't MY son grow? What did he do to deserve this?

But truly, I'm so blessed. I get to see Robbie smile every day. I get to hold him and hug him and kiss him and smell his sweet baby smell.

I don't think facing those days makes me courageous. I think it makes me lucky.

That being said, I REALLY appreciated the reward and it came in the midst of a good spell of self-pity, so as usual, Mrs. Spit's timing was impeccable. The well wishes and prayers of not just her, but the people who visited on her behalf were beyond wonderful.

But really, I think I'm just an average gal making my way through less-than-stellar circumstances.


5. Describe your perfect day.

This one has required more thought than it should.
I think there are two versions. One is the true fantasy, which would involve a beach, a masseuse, a hot tub and a good book.

But the other is more mundane, but probably more appreciated:

Robbie sleeps in. Wakes and eats well w/o crying.

He plays on his playmat while I manage to shower and eat something.

We play a while.
He takes a decent nap. I join him.

He eats a good lunch w/o crying.

We have good play time in the afternoon w/o any yelling.

At dinner, David takes Robbie w/o having to be drug from the computer and actually interacts with him instead of just sitting with him on his lap.
I get to cook w/o having to stop 13 times.

As we eat, Robbie stays in his swing next to me w/o needing his pacifier handed to hi 25 times and w/o yelling. I get to eat as I want to w/o rushing through to try to get him up before he combusts.

HE eats a good dinner without crying.

We have fun playtime in the evening.

He goes to bed w/o fussing. I go to sleep quickly w/o laying awake worrying about things I can't control.

Oh yeah, and the milk magically flows from my boobs to the bottles w/o having to be hunched over a machine 6x a day.




Voila! Complete.

That wasn't so bad.

And IHO that, I think I'll open myself up for more.

Anyone out there have questions they'd like answered? Wonder how we do something? Miss some history and are confused? Hit me with your best shot. I'll collect questions for a week and make it my project next weekend to get them all answered.


--Trish

Saturday, February 14, 2009

Picture catch up

The boy pulled his tube this morning. I managed not to cry this time, but I still felt like throwing up.

But, on to better things...

I'm way behind on pictures, so I figured I'd try to catch up.




Lookie! My belly button is back to normal.



It's a yummy finger!



I'm keeping grandpa company..zzzzzzzzzzzzzzz



You talkin' to me?



What do you want now?


Mommy reads me a story every night at bedtime.


How YOU doin'?



I see you!



Logger baby says "You're not funny."



Say whaa....?




An EKG.


My skin doesn't appreciate all the sticky stuff.



Just hangin' out at the hospital.



Look at my chubby feet!



Napping in the sun.



Daddy keeps me company.



A nice lady at the hospital found me a swing!




Even baseball players need a nap.



Back at home in my own swing.



--Trish

Thursday, February 12, 2009

Heaven

Seriously, in spite of all the worry, anxiety and stress, being his mom is just the best thing ever.

Sometimes he's really concentrating on something, or maybe he's just woken up, and he catches my eye and smiles so big that he wrinkles his little nose up.

It's like a little piece of Heaven right here on Earth.

--Trish

Wednesday, February 11, 2009

Home

Sorry no update for a few days. Life has been hectic.

Getting discharged from the hospital was a total nightmare. We had so many people in and out it was total chaos. We had the usual nurse and techs and doctors, plus 2 student nurses and their teacher. Then there was a patient coordinator in and out about a half dozen times, and supply company reps.

In the end, I learned to do the NG tube. It was easier and harder than I expected. The actual putting it in is easy. Making your baby SCREAM isn't. Just as I finished up, the patient coordinator (a social worker) came in and was a little too nice to me and I broke down and bawled. (Seriously. When someone is on the verge of tears, the WORST thing you can do is be nice.) She was super nice and listened to me for what must have been a half hour. I just poured it all out. She was very kind.

They had told us we should be discharged by 5, so I packed away my pump supplies. Of course, we didn't get out of there until almost 7. So my boobs hurt and I was frustrated. Then it was storming and I was out of gas. I got lost looking for a gas station and drove around.

Then about 5 minutes from home, Robbie pulled his NG out. You just KNEW it was going to happen.

Got home and got the supplies to put a new one in. Turns out they sent a different kind home than what I learned on. I learned on one with a stylette. This was just a floppy rubber tube.

After several panicked calls back and forth between the hospital and our supply company, the charge nurse finally gave me some tips and I attempted it. It was REALLY hard. Since the tube was so flimsy it was really hard to get to curve around. But I did it.

And then I cried. And considered throwing up.

Really, there's no way I could be a baby nurse. No way in hell.

Then all night that night, Robbie's apnea machine went off because his resting heart rate is so low now. I'm talking probably 20-25 times. Suffice it to say I was VERY tired in the morning.

Yesterday was good and bad. His eating was quite good (taking at least 55 at every feeding) but I had so much to do.

I won't even get into the phone games I had to play to get everything done, but we also had OT, a home nurse visit and the medical supply company came to adjust the monitor.

Robbie's is sitting at 10lb 1.5oz. That's not too bad considering he had dropped back down to 9lb 15oz last week and that he was only taking full feeds for a couple of days.

In big news, Robbie is getting TEETH. I can't believe it. I made a person who is going to have TEETH.

I really didn't know when to expect them. He's acted like he was teething for a while, but we never saw anything. Preemies tend to teeth later than full term babies, and of course even full term babies have such a wide range of when they start getting teeth.

But he has two white spots on top. One of them looks even clearer today than yesterday. They're coming through in the front so it probably will be a while before they're through, but he sure has all the symptoms. He's warm (haven't taken his temp, but he does feel warm) and drooly and OH SO cranky.

He really likes this vibrating teether than a friend brought a few weeks ago. But a momma has a few other things to do besides sit and hold a button down and rub gums. Robbie doesn't think that's the case, though.

We're managing okay for now, though. I'm getting used to the food pump and have retaped his tube a number of times to keep his fingers out of it. So far so good.

His eating is less good today, but still not as bad as it was. I have a feeling it's going to be a back and forth thing for a while. I just hope that it ends up good enough to not need a G tube.

Pray with me!

Trish

Monday, February 9, 2009

Going home

I give in. I'll learn to give the NG.

Dr. GI thinks we might be able to get him where he needs to be within 10 days or so.
She's sending us home with a week's worth of home nurse visits and a feeding pump.

I'm so ready to go.


--Trish

Day 5

The EKG was "negative" meaning normal. So that's good.

Through the night last night he took 60-65cc. He had one bad feeding today (10) but the rest of the time took 50-55 pretty reliably.

The NP that I love rounded today and we talked a while. I really do like her a lot. She had 26weeker twins and one of them came home with an NG tube. We talked a while about how it was almost a relief because she could feed her that way and not have to fight. Then she felt guilty because she was relieved.

Yeah. Preach it sister.

We talked quite a bit about mommy guilt.

My MIL drove up to see Robbie today (a 2 1/2 hour drive to stay for maybe 2 hours and then drive home. She loves him so much.) and was here for the conversation. Afterward she commented how glad she was that we got to talk about it. She knows I've been struggling with all of it.

I felt so bad today. She showed up and Robbie was THRILLED to see her. All smiles and giggles. Then all of a sudden he just burst into tears and could not be consoled. Keep in mind that Robbie just doesn't get like that very often. He fusses but really just outright wailing tends to be reserved for baths and nurses with needles.

I took him for a walk around the floor and got him calmed down. Walked back into the room, he took another look at her and burst into tears again. I have no idea what got into him. She took it in stride, thankfully. He eventually got over it but honestly, he cried for a good half hour of her 2 hour visit- I mean full out tears streaming down the face crying.

Anyway, right now I don't know when we're going home. I thought it was going to be tomorrow, but ironically the fact that he's doing well is actually keeping us here. If he weren't making progress, they'd just send us home with a 2 week ultimatum. But since he is making progress, they want to keep working on him.

She wants to give him a little more time at 75cc (Him taking what he will by mouth- the rest in the tube) and then up him to 90cc and see how it goes from there. If we can get him to take somewhere close to 90cc, that leaves enough leeway that if he doesn't eat that much all the time, he can still consume enough calories to thrive.

I wish I felt more positive, but past history has me skeptical. But man would I love to be wrong.

I'm so sick of this place.
We even had the great day nurse from yesterday again. We totally bonded. She left today with the address for Robbie's blog and promised to keep in touch.

Oh- and I MUST share this. She actually said "You seem like such a mellow, easy-going mom."

I'll hold on while you laugh.






Done?


Okay, a minute more.





Yeah, I laughed, too. She said this in front of my husband and MIL and I couldn't help but glance over to gauge their responses. My MIL had no reaction. My husband cocked an eyebrow.

Yeah- me, mellow. I believe she meant I was easy to get along with. Which CAN be true but isn't always. I'm easy to get along with when you treat me and my son well, but if you don't- well, I'm not so easy going.

Anyway, it was nice to have a friendly face. I'm sorry she's off until Thursday. I REALLY hope we're gone by then, so we won't have her any more.

Our night nurse tonight seems nice. And she actually managed to figure out that monitor w/o needing a team of three people (I guess they're new and complicated.) and managed to change the settings so that he isn't constantly alarming. I might actually manage to get a couple hours of sleep tonight. Glory be!

In any case, it's almost time for his next feeding and then I'm really going to try to get that sleep. Wish us luck for growing feeds.

--Trish

Saturday, February 7, 2009

Better day

The key to living in the hospital is really one big things- Nurses.

Seriously. Bad nurses make for bad days and good nurses make for good ones.

Fortunately we had a great nurse last night and another great one today.

Last night his heart rate was doing the same crazy stuff. Low and irregular. I was frustrated. How can they keep telling me that it's normal when I know it's not?

I brought it up to the night nurse and she actually listened. Instead of hitting a button on the machine to shut it up, she got the stethoscope out and listened. sure enough- she could hear the irregularity. She went straight to the resident pediatrician.

The pedi's thoughts were that it could actually be from the NG tube. It can stimulate the Vagus nerve and cause weird heart stuff. It made sense to me because it used to happen back in the NICU.

Good Night nurse seemed like she was a little relieved but also wanted confirmation. I took the hint and suggested that maybe we might want to do something to confirm that. She said she'd be sure to pass along to the day nurse that perhaps we could get an EKG. THANK YOU.

Later in the night I rolled him to his other side and his heart rate improved. She commented that it would make sense that if it is the tube moving him would help, it's probably moved off of the nerve.

This morning, we had another good nurse. Very attentive. I like that.

Then the NP rounded on him. (I so much prefer her to Dr. GI.) and I mentioned the thing again and before I could even say "maybe we could get an EKG" she said "I'll go ahead and order an EKG." SCORE!

In the meantime, he's been eating better. Not great- but better. With the exception of one bad feeding this morning, he's taken between 50 and 62ml every feeding. (When we were admitted, I was struggling to reliably get more than 15 or 20ml into him.)

GI NP was "encouraged" and said he was "doing better than they expected."

We also got a visit from my favorite respiratory therapist from the NICU. She was present at Robbie's birth and always had a soft spot for him.

It was also therapy dog visit day. I managed to miss him because I was in the shower. I heard Robbie giggling and tried to get my clothes on to get out to see him but I missed it. David said the dog tickled Robbie's foot with his ear and Robbie thought it was hysterical. I'm so bummed I missed it, but glad that Robbie got something out of it.

All in all, it's been a goodish day.

Of course, during the time I was typing this, Robbie just ripped his NG tube out (despite the fact that good day nurse JUST retaped it an hour ago. GRRRRRRRRR) so we'll see what happens. She's not going to put a new one in yet. She's going to talk to the doctor and see if she wants to try to get by w/o it. I sort of doubt that, but we'll see.

Anyway, please keep praying. If the improvement continues, he may actually manage to get buy w/o surgery.

--Trish

P.S. The results of the EKG aren't in yet. Will let everyone know when I know.

Friday, February 6, 2009

Day 3

His TSH was normal.

His resting heart rate continues to be low. Currently it's about 78. I am trying to accept that it could be okay, but then occasionally the monitor dings saying "irregular heartrate." and I feel like puking again.

I'll be pushing for more answers tomorrow.

Dr. GI acted like I was a crackhead for being concerned. She also didn't want to order the TSH that Dr. P wanted. In the end, she did it, though.

On the eating front- they were prepared to send us home with the NG tube. I balked at having to do it at home, though.

Though honestly, I'm probably going to have to. But I'm NOT happy about it. If you could see him freak out when they even mess with it, you'd understand.

We compromised. Right now the plan is to keep him for the weekend and see if things continues to improve. (Dr. GI said she was "encouraged" because he's been taking closer to 45ml at a feed instead of the 15 he was at before.) If still not taking full feeds, he goes home with the NG tube for 2 weeks.

If after 2 weeks he's still not taking full feeds- G tube surgery.

I asked about an endoscopy to see if there is something else going on in his stomach. I specifically asked about scar tissue from his multiple surgeries before. She said they don't see adhesions in children as young as him. Ditto for things like celiac disease.

I don't get the impression she cares a whole lot more for me than I do her. We're clearly not each other's kind of people. But she does come highly recommended by both multiple medical professionals and other parents.

The trouble with getting a 2nd opinion right now is that she's literally the only pedi GI doc on staff here. Though if my pedi is in tomorrow morning again, I might ask about seeing the pedi GI at her home hospital before we go through surgery.

I did ask if they could scope him during the beginning of the surgery and just make sure they don't see anything. She said we could discuss that with surgery if the time comes.

I think the surgeon would agree to that. He did the same thing during Robbie's first round of surgeries to check for inguinal hernias. Just took a peek with the scope, saw them and fixed them while he was there.

That would minimize the times he needs to be anesthetised as well. Seems like the best of both worlds.

And I really like the surgeon who worked on him before. A few of the nurses in the NICU told me that if their kid needed surgery and he wasn't on staff here, they'd follow him to wherever he was to have them do it. And that was our experience with him as well. So that's comforting.

Other than that, not much else going on. (As though that isn't enough.) OT was in for the 2nd evaluation while he was more awake. No real changes. I did get a pretty good pep talk from the OT. Basically that I'd definitely tried everything. She liked some of the tricks I used to get him to eat a little more and generally was very positive about both his skills and mine. It did make me feel good. I guess there is a little part of me that keeps waiting for some professional to say "You mean you haven't tried __________? Well no wonder he won't eat, you dimwit!" Mommy guilt, I suppose.


David took the day off today and spent it with us. I think my phone call at 6:30 this morning saying "his heart rate isn't right" scared him and he said fuck work and came to spend the day with his family.

it was nice having him here. He even fed Robbie one of his feedings this afternoon. (That hasn't happened in AGES.) After lending moral support through it, I promptly passed out and took a 2 1/2 hour nap. God I needed it. I was punch drunk.

So we do have an end in sight. A couple more days here at the maximum.

As long as we get this heart rate thing settled, I think we'll be okay.

I don't love the idea of the G tube, but there is a big part of me that really thinks that's where we're going to end up. It'll be just like everything else- A new normal.

--Trish

scared

Overnight his heart rate has been very low. Anywhere from 60-100bpm. We still use the apnea monitor at home at night which has a lower limit of 80bpm. So he is not normally below that.

His monitors here have been going crazy all night.

No one knows why.

All his other vitals are normal so for now they're just watching him closely.

I've been up most of the night sick w/worry.

Please pray..

--Trish



**update**
Pedi was just in and said that it could be his thyroid. She's going to ask Dr. GI to order a check.

She also said that his resting heart rate can be that low. I told her that our lower limit at home is 80 and it hasn't gone off in months. She said that since he was anemic, that would drive his heart rate UP, so now that he has gotten the transfusions, his heart rate could be lower.

They're watching it closely but not freaking out. She did make me feel a little bit better but I still feel like puking.

Thursday, February 5, 2009

Day 2

Not much change today, really.


He didn't want to go to bed last night. He was so tired but just wouldn't settle down. It was 2:30 before he finally gave up.
I was thrilled to let the nurse take his 3:30 feeding. I got more than 2 1/2 hours of sleep at once for the first time in probably 4 months.

I also let her feed him at 6:30, though I got up to pump.

I actually felt a little guilty about it because I feel like it's my job. But I'm determined to take advantage of the few benefits that the hospital provides. (Readily available experts, unlimited access to breast milk bottles & magic blue bulb syringes- and the best part- our snack room has an ICEE MACHINE.)

This morning our pediatrician popped in. She told me she was just here for a social call. Since she didn't admit him, she doesn't need to write orders so she was just checking in. (Have I mentioned that I love our pediatrician?)

She told me she's very glad that I let the nurse feed him. The nurse had reported to her that he did the exact same thing that he does for me- drinks like mad for 15-30cc then just quits. She said that while she believes me, there are always people who think it might be the parent doing something. This shows it's definitely a Robbie behavior.

She said that they'll give Robbie a day or two on the IV meds to see if anything changes. From there we'll discuss a G tube.

I asked if there would be more tests. She said that Dr. GI's notes didn't really explain her plan, but that they might do another upper GI or a scope to see if there's anything unexpected but realistically, there aren't a lot of options.

I told her that I felt like a fool for having the G tube removed almost 6 months ago. She was vehement that there was no reason to feel that way. He was eating great and growing well and thriving. There was no way to know that in 6 months things would turn out this way.

She told me about another patient with a G tube who had it removed recently and how well she is doing.

I told her that I knew that I should count my blessings because feeding issues are so common and in the grand scheme of things it could be worse. She nodded. She added that we could be dealing with a bad brain bleed or any of a hundred other really awful things. "A G tube is nothing." were her words.

She was very encouraging, really. Talking about how we won't have to stress over drop any more. Every encounter with food can be pleasant for him. She really did make me feel a little better.

We did get an OT evaluation today. He did the exact same thing as he always does. (I will give him credit- at least he's not making me out to be a liar.) They were perplexed as well.

I heard the exact same things today that our EI OT said last week. He's got great oral motor skills. But he hits a wall and he's done. They don't know if that wall is when he starts to feel food in his stomach, when it starts to stretch or what- but something triggers him to shut down.

He was very, very sleepy when they came to evaluate him (after having gone to be late, gotten up early and refused to nap this morning, he'd finally collapsed about 2:00) so they want to reevaluate him tomorrow. I told them it's the same whether he's awake or asleep, but they're welcome to come watch any time they want.

So for tonight, we're just hanging out. He's (not) eating and (not) sleeping. I'm (not) sleeping and drinking all the ICEEs I want.


--Trish


Confidential to Mrs. Spit:

http://www.icee.com/


Pictures

A few pictures from today.

I also have a bunch to post from the last few weeks. I've been a slacker mom on uploading. I had 51 pics on the camera tonight. Oops.

My room.


Chillin' in my hospital bed.


Takin' it all in.


Daddy snuggles me.



On Mommy's lap in my fancy hospital gown.

Wednesday, February 4, 2009

admitted

Well, we're admitted.

He was up a whopping 5oz in the last 28 days.

I was proud of myself that I didn't cry. But tears came later.

Right now the plan is IV Pepcid for a day and see what happens.

We got up to the peds floor (the newly renovated peds floor- all private rooms THANK YOU GOD FOR SMALL FAVORS.) and got situated.

They ordered some labs.

Then came the baby torture. I admit that I cried. He screamed and screamed and screamed until he was hoarse.

They put an NG tube in. Then an IV. They had trouble finding a site for the IV because he has so much scar tissue from when he was born. (Don't mind the shattering sound. That's just my heart.)

Then a heel stick for more tests.

It took a good hour for me to get him calmed down after that.

Then came the news that his hemoglobin is low. They want to do a blood transfusion. It could be making him weak. No one knows if it being low made him eat poorly or if eating so poorly made it low.

The transfusion meant more tests. They have to type and cross (though I do NOT understand why when he's had blood transfusions here before but they tell me it has to be less than 3 days old) so that meant another couple of needles. They couldn't hit a vein and finally ended up doing another heel stick. More screaming. More crying- from both of us.

Another while to calm him down.

The only good news is that while I went downstairs to get my suitcase from the car, they gave him his first dose of Pepcid. The day nurse said when she came in he was fussing a bit. She gave him the IV Pepcid and five minutes later he was perky and cooing. So perhaps it really IS his stomach.

Right now we're trying to feed him every 3 hours. Anything less than 2 oz gets fed into the NG tube.

Of course, most of it has gone into the tube. He isn't interested in eating AT ALL.

I can't blame him. This sucks for me and I'm not getting jabbed with tubes and needles every few hours.

But I know it's for his own good.

So far the nurses have been pleasant. The NICU PT came by to see us earlier. She'd seen our name on the board. I told her to feel free to send more friendly faces.

I also ran into our pediatrician when I was getting our things from the car. She hugged me and assured me we would get to the bottom of this. She'll be in to round on him tomorrow.

We're mostly staying in and hiding.

The baby in the room next to us has RSV. I can occasionally hear her crying and coughing. There are signs on the door and I see the nurses gown up before going in. But I still prefer to hide.

So that's what we're doing.

Currently Robbie is semi-sleeping in David's arms while fresh blood, Pecid and fluids pump into his IV.

I'm considering going to the cafeteria to see if they have some honey roasted Bugles. This is the only place I can find them. If only that made up for the rest of it.


Thanks for the continued thoughts and prayers. We're going to be here at least a few days. We need them.

--Trish

Wolves

This will be short. It's been a long trying day filled with headaches both figurative and literal.

He still won't eat the formula.

Dr. P said to keep trying but wasn't hopeful. She put in a call to the GI doc to discuss the situation.

We see the GI doc tomorrow. Dr. P told me to pack an overnight bag. She anticipates that we'll be admitted to the hospital after the appointment.

At leat this time I get to pack. It'll be a new experience being in the hospital with clean clothes.

I'm worried and anxious and relieved and guilt-ridden.

I dread the poking and prodding and general baby torture. I dread hospital beds and frequent nurse interuptions. I dread piss poor TV and hospital food.

I'm relieved someone is finally taking us seriously and we might get some answers.

I feel guilty that I feel relieved. The first time someone tries to shove a tube down his nose and he cries I may just implode from it.

But I know it has to be done. He can't starve to death.

I had a long talk with him earlier and explained that tomorrow is probably going to be a seriously shitty day. I told him how sorry I was but that I promised it was only because we were left with no other choices and only because we loved him.

I'm not sure he was convinced.

I feel a little like I'm leaving him for the wolves. Only I'm going with him to watch the gore.

I could really use about 300 hugs, 12 hours of sleep, a large margarita and infinite prayers about now.

Off to bed..

--Trish

Monday, February 2, 2009

ARGH

I'm so frustrated I could seriously cry. Or hit things. (Don't worry- I mean solid things like walls or windows not soft things like husbands or babies.)


Okay, so Dr. P said to get Nutramigen AA. Sounds simple. But nothing in my life is EVER simple, so I don't know why I ever thought it could be.

She said Wal.greens could get it.

A helpful friend found a helpful pharmacist at a Wal.greens across the city. He offered to order it despite my local Wal.greens acting like I'd just asked if he could order Martian piss. I asked if I could have it sent to my local place for "convenience." (Really, that will be funny later.) He said that any Wal.greens with an employee not too lazy to look it up can order it. (He said it only slightly nicer than that.) He even gave me the UPC so as to not tax said lazy employees.

I called my local Wal.greens and asked. They still acted as though I was ordered Martian piss, but said they'd order what I said. "Call tomorrow."

Of course, you can guess- it never got ordered.

I chewed the ass of the store manager and was assured it would be taken care of for Friday.

Friday they tell me it's in.

The husband goes to pick it up after work. You guessed it- wrong stuff.

Again, I call and complain. I'm told I gave them the wrong UPC.

Ummm. Well, see, the trouble with that is that the UPC I gave them doesn't remotely match the UPC of what they gave me. (Nutramigen DHA)

They call and say it'll be ordered correctly- FOR MONDAY. Because, of course, no one delivers on the weekend.

I made another couple of calls to see if someone else can get it, but no one can find out until Monday.

Fun times.

Okay. So today it finally comes in.

FIFTY FREAKIN' DOLLARS for a not-very-large can of it.

But hey, if it cures the boy, I'll whore myself on the streets if need be. (Uh, Internets? Anyone know of streets where rich men like fat lactating women?)

You guessed it- he WON'T EAT IT. Maybe it really IS Martial piss.

I don't mean he won't eat it in the usual "he doesn't eat much" way. I mean, I can get 15-40 ml of plain breast milk into the boy at any given feeding. (Keeping in mind he should be eating more like 90-120.) I managed to get three, YES THREE, ml into him. I waited until he was REALLY hungry. He chowed down like you wouldn't believe. Got it in his mouth and hid his face.

I tried the bait and switch with the pacifier. Half a suck and he'd squirm again. In the end he just cried hysterically.

Finally I gave him a bottle of breast milk and he sucked down a little more than an ounce in about 10 minutes (That's REALLY good for him lately.) and passed out.

My plan is to try to sneak a little formula in during some night feeds where he's pretty out of it, but I'm not hopeful.

It honestly smells like ass. Sort of like what a bowl smells like after it's had fish in it and been washed once. It's lovely, really.

I can't blame him.. sweet, wholesome breast milk or 3 day old fish tint? Which would you choose?

BUT WHAT THE FUCK DO I DO?

I've been pumping him full of Mylanta thinking that if he does have a food allergy and his insides are torn up maybe that will help soothe it. And he has been eating slightly better. (Instead of 15-25cc, I'm getting 30-40cc into him. Obviously still not enough by a long shot, but it's SOMETHING.) Which makes me feel like something IS going on in there. But now what? If he needs the hypoallergenic stuff, how do I MAKE him eat it?

Do we have to put a G tube in just to pump him full of nasty stuff?

I don't know what to do. I'm so, so, so, so frustrated. I could cry but it would do no good.

Please pray for patience. Pray for numbed taste buds. Pray for healed insides. Pray for good eating.

Just pray for us, please.

--Trish

Sunday, February 1, 2009

Repeat after me

I WILL NOT COMPARE MY PREMATURE BABY TO OTHER CHILDREN.

I WILL NOT COMPARE MY PREMATURE BABY TO OTHER CHILDREN.

I WILL NOT COMPARE MY PREMATURE BABY TO OTHER CHILDREN.


I WILL NOT COMPARE MY PREMATURE BABY TO OTHER CHILDREN- NEITHER FULL TERM NOR OTHER PREEMIES.



I needed a reminder.


--Trish