Well, the verdict seems to be: Reflux.
Now, I know what you're thinking- But Trish, he had a fundoplication which should stop reflux. He couldn't even burp 10 days ago.
Yep. You're right. Yet again, my boy defies the odds.
His labs showed he was a little bit dehydrated, so he got pumped FULL of fluids (IV and pedialyte) overnight. He did not appreciate the lack of food and screamed most of the night. At one point I was singing nonsense to him that including selling him to gypsies. Then my old infertile self came back and I felt terrible joking about giving my kid away and took it back.
But I was literally so tired that I cried and wondered if I was really cut out for this mom business.
A nurse took pity on me early this morning and took him out of the room for labs and feedings so I could sleep 4 hours and I feel like a new woman. That puts me up to about 16 hours of sleep in 5 days.
In any case, he got increasing amounts of pedialyte overnight and then our pediatrician rounded this morning and ordered an upper GI.
I went with him down the lab and fed him the barium in a bottle. I think he was just happy to have something that wasn't water and he gulped it up.
Then we sat and watched him reflux on the screen. Even I could see it. I prayed that I was seeing the tech rewind the tape and that wasn't REALLY barium going back up into his esophagus. Finally I asked "Is that the stuff coming back up?" "Yes."
So we came back to our room. That's when I got to sleep a little while.
The GI specialist came by and said that the fundo is still intact and in the right place, but he's getting around it anyway. So now we just treat him for reflux. Of course "just" treating for reflux sounds way simpler than it is. We get to incline him to sleep, hold him up after feeds, thicken his feeds, give him meds. He's been on IV Pepcid since last night. They pulled his IV today so now he's on oral Pepcid.
They say we can go home tomorrow.
So the good news is that he isn't sick. The bad news is that this is probably going to be a long battle.
But for now we'll count our blessings.
Also- I left Robbie with his dad for an hour and visited our friends in the NICU. I got a kick out of saying hi to Dr. C. He automatically said hi before he even looked up, and then when he glanced up to see who it was, he did a double take.
We're getting that a lot. We've run into several respiratory techs, his lactation consultant, his physical therapist and a couple of nurses. Everyone has the same shocked look. WHY ARE YOU HERE?
Reunions are nice, but only after you have time to miss people.
Here's to missing them all again soon!
--Trish
Monday, September 8, 2008
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9 comments:
Oh mercy. When I got home a few minutes ago and read yesterday's entry first, all I could think was crappity crap crap. Today sounds a little better, though.
I wish I could tell you guys that every day will be perfectly smooth and normal, but you know I'd be lying to you. As the older sister of a severly handicapped brother, I've spent a lot of time in hospitals caring for someone who is limited in his communication. And is SO TOUGH. I can't imagine if it were my own child, a tiny-bitty baby.
Everything will be okay, yet I'm sure there will be two steps forward ten steps back for a long while. You & David can do this. It won't be easy, but you both have already proven what wonderful parents you are. Plus, Robbie needs you and it just has to be done, huh?
Know that I'm supporting you, praying for you, and hugging you from afar. Novel over - but I'm thinking of you all.
Breathing a big sigh of relief that he isn't sick, still I wish he hadn't been so bound and determined to have reflux. Boy, he's unstoppable!
Sending thoughts and prayers (and cuddles to Robbie, although if you feel you're in need of some, I'll cuddle you too).
Poor baby.. we're dealing with our own terrible Reflux issues here. I'm sure that you'll find the right cocktail of meds and positions that work for him, you're doing GREAT, momma.
One of my twins has reflux. Such a innocuous sounding six letter word does not convey the full horror of the red faced writhing, screaming, projectile vomiting and inconsolability it brings.
So sorry your Robbie had beat his fundoplication...
J
AAw, poor baby - and poor YOU! My frined's baby had bad reflux for the first couple of months after he was born, and she went through many sleepless nights and lots of pukey shirts. (she was even slightly over feeding him at one point because she wanted to make sure he was gaining weight since he was puking after every feeding.)
But not that I am trying to make it sound terrible - the point is, he got over it and now he's a happy fat baby. it just took time.
I'm mostly a lurker, I have 2 children both with severe reflux/GERD. With my daughter, we use the Enfamil A.R. formula, Dr. Brown's bottle and Zantac, which helped, but we struggled with her for the first 9 months of her life, when my son was born and he had reflux too I was about to pull my hair out (I tried for 6 years to have babies, I thought after struggling with infertility having a child was the easy part... wrong!) a friend suggested to take my son to a chiropractor, OMG after one adjustment, my 4 week old son never showed any signs of reflux again... amazing turnaround!
My twins had reflux and colic, and there were *many* nights when I wondered if the 6 years of ttc were a good idea. Reflux sounds so simple and yet somehow manages to be pretty horrible, especially if it comes with such extreme vomiting that you experience failure to thrive. I could go on and on about that experience, but I'll just end on the note that they grew out of it around 9 months, the girls started gaining weight, and things became much easier! *hugs* Good luck!
(((Hugs)))
I've found your blog through a fellow preeclampsia survivor's blog ... (love the way the internet works, eh)
I am SO happy for you that Robbie is home - again!
And I am sorry to hear he has reflux. My Henry had reflux (born at 34 weeks after 6 weeks bedrest). He was on meds, with dosages increasing as his weight increased, until he was 12 months. But then, I promise you, it DID get better!
Having a kid with reflux is tough. Being a preemie mom is tough. Please be gentle with yourself and take breaks if needed.
And BTW - the gypsies won't take him! They know better than to get between a momma and her baby!
(((hugs)))
I'm glad you got some sleep. You need to try to sleep as much as you can in your circumstances. It will keep you sane, as I'm sure you've realized. I'm sorry to hear the reflux is still there, but I'm glad to know that they know what the problem is. Hopefully, the maintenance care will make things better once you go home.
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