Wednesday, October 12, 2011

What a year it has been...


So I have been mulling over what this past year has been like with the Tank.  So many events recently are  making me reflect on what our experience was with the little man and just how far we have come.

So to recap the initial events (and by the way this has to do with bodily fluids so stop now if it is too gross.)  Tank was born at 34 weeks, spent a night on the ventilator because his lungs weren't quite ready, and because he was a bit sick, was given IV antibiotics for 2 days to ensure that he didn't have infection.  He was fed via a feeding tube for 2 weeks while he learned how to eat.  Most babies poop within the first 24-48 hours of life, and if it is longer than that the baby may have a problem with the intestines.  Tank pooped on day 3 -but that is not horribly abnormal for a preterm (especially one that is born much earlier) infant.  So we noted it -but didn't get too worried.  Then as the feeds increased - and he had to get formula because there wasn't enough BM, well he started puking.  I could pretty much guarantee that every morning I would find him covered in puke (he would get the formula over night).  As more BM came in, then it seemed he didn't puke quite as much.  And he started pooping more.  But not as much as most BM fed babies do.

So finally we get him home and within a week or two - the pooping stops and the puking gets horrible.  He started projectile vomiting - and not just with a little heave -but literally shot it 10 ft across the room.  We would stand with him over the sink so it would at least just land there.  All feeds had to occur on the hardwood floor so we could clean up the puke -because we never knew where it was going to land.  So back to the dr we went.  Abdominal X-ray was little abnormal (which apparently his 2 in the NICU were as well).  But figured we would wait and see how the next week went.  We had tried several different formulas (used to supplement the BM) and nothing seemed to help.  As we left the dr.'s I ran into someone.  And a long story short - we got donated BM - a whole entire freezer (actually had to go buy a deep freezer).  We were hoping that would help the puking - it did a little -but not significantly.  And at this point, he hadn't pooped on his own for several weeks.

The next month spiraled out of control.  He required enemas, suppositories, Miralax daily to poop.  The vomiting was non-stop.  We tried probiotics, zantac (at extremely high dosing - 10 mg/kg for those that know this stuff -usual is 2-4 mg/kg) and nothing helped.  I pulled strings (hate to do that but I was desperate) and saw GI.  They asked me how many x/day Tank was puking.  I estimated 50.  I later counted - it was about 75-100 times/day.  8x per feed, 8 feeds/day, and then 2-3x in-between feeds.  It was a lot.  They watched me try to feed him - he was becoming orally averted at this point.  Tank would want to eat - tried to suck -then would start screaming -over and over again.  And then he would puke.  And this is how every feed went.  They confirmed that this was a problem - I started crying.  I thought I had been making too much of a big deal out of it.  It was such a relief to have them say that there was a serious problem and that we had to find an answer.  At this point I had 2-3 weeks left of maternity leave.

More tests, biopsies, meeting with the surgeon.  Everyone thought he had Hirschsprung's disease (the nerve endings are missing in the colon -so the colon doesn't move -ie no pooping - the thing that you are supposed to think of if a baby doesn't poop during the first day of life).  The surgeon was so convinced that we actually scheduled surgery, signed the consent forms - before the biopsy was back.  Surgery (to remove the colon) was to be the day before Thanksgiving - I was supposed to go back to work Monday after Thanksgiving.  Then the biopsies came back normal.  And we were back to square one.

But during all the tests- he had a barium swallow study.  Barium is very heavy - and it was the only feed that the Tank never puked up.  So a light bulb went on- and we tried thickening Tank's feeds.  And it was like magic.  The puking became spit-up - about 10x day - and only a rare projectile.  I no longer had to use towels as burp rags.  It was almost like having a normal baby.  But the other end still didn't work - but we could manage that.  So we never got answers - but at least the quality of life got dramatically better.

And so that continued for 7 months - in those months the Tanked pooped on his own only a handful of times.  But then he had a course of Augmentin for an ear infection - and again it was magic.  He had lots of poop -all on his own.  And then we stopped the Augmentin-and it continued.  And that was the end of it.  We finally stopped thickening his feeds at 10 months (we had tried before several times but the puke always returned).

And at the end of all of this, I mourned the loss of having a newborn.  I am sure this is how many parents of preemies/sick babies feel (and honestly parents of micro-preemies -I have no idea how you do it and stay sane as this was nothing compared to what you go through).  But as I held a brand new term baby last week, it just made me realize even more what I missed out on.  There was never any taking naps/snuggling on the couch together, there were very few trips out, there was just constant bouncing/swaying/cleaning up the puke/praying that things would get better.  And once they all did - I had this giant sized baby.  And I am so grateful for what we do have-a healthy/happy 1 year old-which is far more than lots of parents I know.  Luckily for me -he does like to snuggle now.  But it's not the same.

So when someone tells me that their baby is a big time puker, my heart goes out to them.  It is a miserable life -one that I didn't realize how bad it was (it's just puke right) until we were out of it.  Life can be too short - and we need to do more to optimize the quality of life we do have.



2 comments:

  1. Well, you managed to bring a tear or two to my eyes. Thanks, its nice to know that other people feel the same way. I keep my fingers crossed that my guy will stop puking. I keep telling people that his oral aversion isn't getting better because of the puking (like you saw) but it doesn't seem to sink in cause he is getting what he is supposed to, he has a g-tube. But in order to get it taken out, he has to eat, and so it goes..... there are days he will do well with stuff in his mouth, but we start from scratch every day. Thanks for sharing your story, didn't realize your guy was puking THAT much. Funny how something like puke can drive people crazy, eh. May have to start a group, POU (puke on us) or something. Just have to make jokes about it and it doesn't seem as bad.

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  2. Even as you were commiserating, I didn't realize how truly awful the situation had gotten. I am so sorry for your "loss" - I totally get how it feels like you kind of 'mourn' in some sense, for that newborn period that other parents get to experience with their "normal" babies. (and I use those quotes around the word normal extremely purposefully!!!). I've been there, but clearly, with a very different situation and I can't fathom what you went through (and I can't handle puke, so hats off to you!!).. But I get it, and ugh. What I do LOVE though, is that in between all of that puking, you managed to capture some incredible pictures of Oscar with his amazing smile - and THAT is what you will hold on to. And in 25 years, you will be flipping through the albums and you will look at those with his fiance, laughing about how much trouble he put you through at first, but how he always gave you this amazing smile in those down moments and you were there to capture them! You are such an amazing mom Gretchen! And I think you are right on in saying that we need to be so keenly aware of just how short life is - capturing life while its crappy, and enjoying the smallest of good moments. Plus - what a joy they are now :) Thanks for sharing this.

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