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First week together at home

posted Aug 5, 2013, 2:11 PM by Melissa Burke
It's hard to believe, but it's already been 1 week since we brought our sweet Peter home from the NICU.  Sorry it has taken me a bit of time to write this latest post, but as you can imagine, free time is basically non-existent at the moment. Since our trip to the ER last Sunday, Peter has continued to keep things interesting. On the positive side, he seems to be handling his secretions much better this past week. Last night I think his pulse oximeter (monitor) only went off a few times and since we have brought him home, I can't really remember a time that we had to intervene when he had one of his dips. So it's a relief that the respiratory issues might be behind us (fingers crossed!). We made one change to stop continuous feeds at night and that seemed to make a big difference to help him manage the secretions better, so now he's on bolus feeds every 3 hours around the clock and seems to be tolerating them really well.  Today he was 8 lbs, 9 oz (up 11 ounces over the week), so he continues to pack it on which was our main goal as we transitioned from the hospital (hooray!).  We went to the pediatrician on Friday and he thought Peter looked great all around (see video below).
But the crying has been a different story. Since he has been home I noticed that he would get really upset whenever we would feed him. Initially we chalked it up to hunger since he would typically calm down after he got a certain amount in his belly (we estimated about 12 ml to be the magic number :) ), but starting mid-week he started to get really irritated during the entire feed.  Over the weekend, he just about cried every minute he was awake and had a really tough time when anyone would set him down. The crying was rather alarming - I just felt like he must be in pain for some reason. Our neonatologist heard it on Thursday and was so alarmed that she called for a fluoroscopy (basically a video xray) to check that his g-tube was indeed emptying into his stomach and not the abdominal wall (they test it by injecting a die into the tube to check where it goes). Thankfully, it was, but that didn't stop Peter from continuing to be upset over the next several days.
Finally yesterday, I noticed increasing redness around the site and Peter had a very slight temperature again. I took pictures and sent them off to our doctors at Duke and the conclusion was that it was definitely infected. We started him on a course of antibiotics last night at midnight and after 2 doses this morning, he was like a totally different baby. He was looking around, alert and happy.  He even let us set him down for a while and now he is resting comfortably in his car seat (something that he screamed bloody murder about last week). So, I don't want to claim we have figured out all of the crying but I am hopeful that we might have our sweet P back. How horrible if he was having extreme pain in his stomach for mutliple days! I just try to remember that he won't remember any of this (and thank you for all of you who continue to remind me of this), but it's hard not to blame yourself for not figuring it out earlier. Here's hoping that there are only blue skies to come.
The rest of the week was spent getting to know each other a bit more, especially big brothers Jackson & Tyler. They have been really great with him so far. Tyler was even giving me some tips for how to hold him to get him to stop crying..."No Mommy, you need to rock him like this <he crosses his arms in front of him and sways them side to side>." And you know actually worked that time! 
Hi brother Jackson...that story is soooo interesting
Oh hi, Tyler. Are you going to teach me everything you know?
The Burke Boys
(this is what I get when I ask them to say cheese)
Enjoying my bouncy - nice to have some different options than a hospital bed!!
Peter at pediatrician last Friday
(upon which the doctor said, "wow - he looks really good! I think he's going to surprise us." -
all good things to hear :)