11 weeks home from the NICU.. update
written on FEBRUARY 9, 2015
Good evening all…. hope your week has been great for ya!! A little update here… Matthew is doing good today. Thank God.
On Tuesday, he went to the pediatrician and got his 6 month immunizations. That was no fun..for either of us. He got his head measured for a helmet. But looking at his head shape…I think daddy and I have been doing a good job of “shaping” it ourselves. lol… we literally rotate the poor kid like he’s rotisserie chicken haha… I have heard and read that having a helmet for a couple months or even weeks is hard on a kid.. so I am not really looking forward to it.. we shall see.
On Wednesday, Feb 3rd, we woke up before sunrise and headed to Loma Linda for weekly labs. Right after labs he went to his physical therapy session. The meeting went a lot better than I imagined. I had a vision of back flips and rolls and such… but in reality… it wasn’t like that. lol.. she did some good stretches and showed us some exercises we can do for him at home. his stiff neck is not as bad as it was a few months ago. he can practically look behind him when looking right…but looking left he can only get to his shoulders. we are hoping with what we learned, he will soon have full range of motion in his neck.
we have to work a little harder on tummy time. its just so hard with only an hour between feedings… he’s so full at the end of a feeding…then I only have a little bit of time before the next one starts… its all about time management.
**he was absolutely NOT happy today!
right now matthew is on a feeding pump for two hours.. he gets an hour break. then feeds again for two hours…etc etc. so he only gets one hour free from any attachments. the first time we started him on ‘bolus’ feeds, I think it was too much for him. he would just throw it all up! so we switched him back to pump feeding. well… I think I am going to ask his dietician if I can give bolus feeding a try again. a bolus feed is basically a manual feed. I put formula in this big huge syringe…and let gravity help the formula flow into his tube. it takes just as long as a regular bottle fed baby drink a bottle… so this will mean more free from attachment time. *fingers crossed*
Matthew is currently at 250 fill volume. he is still not up to the fill volume that other babys his size or age are at… but we are trying to get there. our new goal is 300. 310 actually… but I am being nice.. 300 and I will be happy. he has just been so sick and so unstable with everything… we don’t want to rush anything. based on last weeks phosphorus scare, one of his nephrologists actually suggested a shorter dialysis time and dwells… so we went from 16 hours..16 dwells.. with 75 minute dwell times…. to 12 hours..14 dwells.. at 45 minute dwell times. well, based on Wednesdays labs.. that was no bueno. his urea (the pee-pee toxins) rose.. so that meant he was not getting cleaned out like he is supposed to… SO… doctor changed it to 14 hours..14 dwells..1hr dwells. (if you are confused, I can explain better if you need me to..lol)
I really hope one day we can get to a normal range… I have seen so many babys on like 9 hrs.. 10 hrs… frustrating to see other babys do so well.. but my husband always reminds me that Matthew has always been that special boy! our miracle boy. and so with that.. I am grateful..i am happy… I am blessed!!!
….Today was one of those days for me… I read about a few people that I follow about their children.. some not doing so well… one that passed away this morning. I can only imagine the pain they, as parents, are feeling. It brought back so many fears and emotions for me. It was a tough morning. Just one of them days, I guess.
Well… baby twin Callia is crying.. so I gotta go now..haha.. I will update some more soon. thank you all for your continued prayers. love you guys!!