Day of life #132

Well the good news is Madeline's Gtube surgery went well! She made it through like a champ. She was in the hospital Monday through Wednesday just to make sure everything was ok. The first night was very hard because she was not allowed to eat and she was extremely hungry (she was up every hour!). Poor little girl.
Anyways- They only needed to do the g tube surgery, not the more complicated surgery where they surgically fix acid reflux so that was  good news.

However, she has been extremely crabby since she has been home. It's hard to know what is really going on. She is normally a very happy baby unless she is hungry or needs a diaper change- but since Wednesday she cries all the time and always wants to be held or walked around with. She hates getting her diaper changed anymore (which she used to love and laugh through all the time!). We are not sure what to think/do. We called the nurse in the surgeon's office and she suggested 'venting' the gtube- which is where you attach an empty syringe to the tube and let any air that might be built up come out. It's hard to know if that really helped or not. We also think she may be teething because she is drooling a lot and gnawing on our fingers and whatever she can get her hands on. We even let her cry herself to sleep twice now because we tried everything to comfort her and she wouldn't calm down. Hopefully she will begin feeling more like herself soon.

We also were told by the nephrology office that based on her last blood tests she is more anemic and we need to start giving her Ipogen shots again for her anemia. This will be twice a week .We are pretty disappointed to hear that. She is consistently having to get blood draws, and go to doctors and be poked and prodded at - we hate having to do even more to her- but we have to do what she needs. The good news is they said her blood pressure's are really good so they are decreasing her BP meds- They told us we should call if her bp goes above 100 since decreasing meds- which it did yesterday but we could not get through to the nephrology office so we are not sure what they will say.

Things are exhausting lately and it feels like Madeline can't catch a break- but we know that things could be worse- We know that God has a plan and that we just have to be strong and trust in him to help us through everything. We are so thankful for every day with Madeline.

Thanks to everyone for always being there for us!


God Bless