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Sunday, August 29, 2010

Eat, Sleep, Cry

The first week with Jonah home was tougher than we thought.  No doubt, he's a project that requires 2 FTEs 24/7.  There are signs of improvement each day, but Mom and Dad are running ragged just trying to stay on top of Jonah's schedule.  Hence, this post will be just be some quick highlights.
  • We stopped the formula supplement, which seems to have helped his stomach discomfort a bit.  So now he's on a 100% breast milk, but in order to get the extra calories needed for weight gain the volume per feeding needed to be increased. 
  • Jonah had his first Norwood Clinic on Friday.  When they called us back from the waiting room, Jonah proceeded to puke up his meal on his only outfit (Stacie brought everything but the kitchen sink in Jonah's diaper bag...but forgot a change of clothes-oops).  This led to an unhappy and mostly naked Jonah for the rest of the visit.  We met Gia and Dr. Husayni and everything checked out okay.   His weight had stayed about even, 8.2 pounds, so they definitely want to do everything possible to beef him up without causing stomach discomfort or throw ups. 
  • Jonah's 'collicky' behavior is getting a little better, but he still gets raging mad and upset far too often than his parents would like.  It's so hard for us to differentiate 'normal' baby stuff from everything else that's he's going through.  Is he just hungry?  Is he over-tired?  Is it acid-reflux?  Is it his stomach?  Is it the Reglan?  NG tube?  Is he breathing too hard? After a call to the the PSHU staff, it was explained to us that this behavior after the Norwood is extremely common. These kids have plenty of reasons to get GI distress (too many details for the moment) and only time and maturing will relieve them of some of the issues.  
  • He's slow to take to the pacifier, and he's definitely still stumped on what to do with the bottle.  We try a couple times a day, but at his next clinic visit they will do a swallow study to make sure he's got the suck, swallow and breath coordination down sufficiently.
  • Reinforcements have been called in.  Finding time to shower, eat, clean, do laundry, and of course sleep, is a luxury at the moment.  Stacie's mom will take this week so that Rob can go back into the office.  Rob's mom will then take duty the subsequent week.
Although we were expecting a complete culture shock bringing a newborn baby home, we can't say enough how challenging the "extras" have been. We have been sticking together through thick and thin, each of us only wanting the other to have a few minutes to de-stress somehow as we take turns managing the little guy. Jonah has had us holding our breath for the last month as we learn about what it's like to raise a child with a congenital heart defect.  Knowing we still have a long way to go and so much more to absorb, we can't help but feel anxious to see Jonah grow up and grow out of this extremely fragile state.


  1. Hi! Just wanted to let you know that you're NOT alone!!! I remember being SO excited to come home after the Norwood and then being so overwhelmed once I did. It is A LOT of work managing meds and feeding for these kids, not to mention their tendency to be overemotional (Bodie was the SAME way - the CTICU nurses used to say he had a "sensitive soul" LOL - but they do outgrow it - he's now the happiest baby ever!). But hang in there - you'll figure out a system that works and before you know it, you'll be in a rythym. It's still nowhere near as easy as a heart-healthy kid, but you'll find a way to make it normal for you. What helped me the most was (1) an excel spreadsheet and (2) prepping all meds for a 24 hour period after Bodie went to bed at night. Then, I wasn't trying to prep meds while he was screaming at me. It helped me a lot. If you'd like to take a look at my spreadsheet, I'm happy to share - my email is Good luck - and hang in there - you can do this!!!

    Heart hugs,

  2. We are sending good thoughts your way and wishes for even a few hours of sleep together. I can't imagine how much adjustment must be involved in all of this. I will be sending a few things for Jonah with Rob's mom next week as well as lots of prayers for Jonah's little body to adjust to all of its new challenges