CPAP :(

I know that being put on CPAP is much better than having to be re-intubated, but we can't help but feel defeated today. Ben and I have both avoided blogging today because we both feel so down-in-the-dumps. Evan made it through most of his 1st night after being extubated without too many troubles, Dad reported a few times being woken up by the chaos of bells ringing but nothing too major. Unfortunately, the 5am chest portable x-ray came back much worse than had they had hoped for. His lung atelectasis had increased enough for them to have to put him on CPAP for support. Dad held him and comforted him for quite some time before leaving for home to join me and the other littles. We did a couple feeds together before I left to visit Evan. When I got there I was taken aback some, I guess after leaving yesterday feeling so happy about his extubation and decreased swelling I was hoping to see more improvements. Instead I found Evan looking about as swollen (if not more, but I think the CPAP makes him look more so) as yesterday and really working hard to breathe even with the extra help. He had a fabulous nurse who was sweet in comforting me the hours that I spent with him today. The Dr also informed me that he needed to be put on another set of antibiotics because the blood culture they took a couple nights ago when he spiked a fever came back positive for a bacteria that can lead to pneumonia if not treated.

Dr. K also "mentioned" that the surgeons were concerned that Evan *may* really struggle when we introduce milk to him on Wednesday. There is a possibility that the very sick bowel they left inside of him may heal with "scar tissue gone wild" (as described by a surgery resident) which could lead to strictures that could slowdown or block the passing of the food. I guess we will know pretty quick by either his stomach becoming distended again or vomiting. This could mean more surgery :(  Now, he *may* not be healing with excessive scar tissue and he could pull through strong and mighty. But, being this is the first I heard of this "concern" you can imagine where my mind started going! I couldn't help but cry and ask the nurse what if his whole bowel is one big rope of scar tissue?? Thank goodness I had C as our nurse today as she reeled me in and told me to concentrate on today and not to go down that path right now. She was great and listened to me as I shared my feelings of being torn between two places and how Ben and I fear that we won't be able to keep up at this pace. We feel guilt when one of us is not by Evan's side, but can not physically or emotionally handle "tag-teaming" the duties at home. Can we enlist more help? Probably. But our pediatrician has reminded us that it is still RSV season here and the last thing we need is one more baby/toddler/parent sick during this time so as much as there are offers to help we are reluctant to accept. But it's not only that, we are a team, and we don't work as well without each other.  We are going to try and have a couple nights at home together in between switching nights in the PICU with Evan. When we stay at home alone we have been having a night nanny or doula at our house from 11pm-7am which is a blessing and worth every cent. But, even after sleeping a full night at home or the hospital you still wake up feeling exhausted, go figure!

This is why we struggled with blogging, it's hard to admit these things! So, please pray for strength for us to get through this- the thought of this being our daily grind for another month or so is debilitating, so we are choosing to take it one hour at a time :)

xoxo, B

p.s. check out the new "button" on the side of our blog for our friend Linus. When you are praying for Evan please throw in an extra one for Linus too! I "know" Linus's mommies from a triplet group and my heart aches for them as they have been on their journey to recovery for much longer than we have. And they have BBB triplets who are quite the lookers as well ;)