Jake has been really fussy last night and today. It seems like he is acting like he did when he did not tolerated the feed increase last time. The odd thing is that he has been on 40ml/hour at night for about a week now. However he is showing all of the signs. Screams when fed. Probably because he is gassy and constipated so he feels full and the feed hurts his belly. I am cutting him back to 39/hour tonight to see if he is better tomorrow. He also has been chewing on his fingers and drooling so he may be in the beginning stages of teething.
His SATS are fine and he does not have a temperature so for now I am just keeping a close eye on him. It all seems tummy related though. He is sleeping soundly right now which is really good. If he continues to be fussy tomorrow we may just leave for Philly tomorrow night and drive all night while he sleeps. Then I could have them admit him there Monday morning and run tests to make sure he has no infection or anything.
It all makes me nervous because we are so close to surgery. I think he is trying to stall so he doesn't have to go lol. In all seriousness please pray that Jacob's tummy troubles resolve and he is in perfect health (For Jake) for surgery next week.
I am so blessed to have had that past wonderful 4 months with my sweet baby boy and I look forward to many more. I don't have a bad feeling at all. I actually feel really good about the upcoming surgery. Maybe because I am relieved we have made it to this point or because I know that Jake is strong, you see it in his eyes. Also because it will be so nice to have 2 out of 3 of the surgeries behind us and have a few years before we face this again.
I was telling Andy tonight that I have an odd feeling like I am going home. Ok I know this makes no sense because this is my home and I am SO GLAD to be here. But I also lived in Philly for 3 months and met so many great people. I look forward to seeing the doctors and nurses again who became such an intricate part of our lives while we were there. I really look forward to seeing Christina and Emma and the other beautiful children who inspire me daily with their strength. Although I know I will be sick to my stomach come surgery day, for now I just want to get this show on the road. The sooner we do this the sooner we can come back here to our TRUE home. It is impossible for me to view CHOP as a dredded hospital because they saved Jacob's life, more than once.
So with that, we are all packed and ready to go. Planning on leaving Monday. If Jake continues to be fussy and have tummy troubles we may leave tomorrow night instead. The beauty of Jakes overnight feed is he does not wake up hungry so it would really be the perfect time to go. Still hoping we leave Monday though because we have a hotel booked for Monday night (Thanks Kim). The Mountain Mission was also very generous and gave us gas cards, Mcdonalds gift cards and 2 nights at the comfort suites in Philly. Now we do not need to worry about the Ronald McDonald house being full. We definitly have a place to stay when we get there. These rooms are such a burden off of our backs. Thank you Kim and Becky so much. You guys are so amazing and generous. I hope to pay it forward one day.
Also thank you to everyone who has sponsored Team Jacob for the American Heart Association heart walk. Thank you for helping me support this great cause.
Please pray Jacob starts feeling better and please pray for everything to go well in Philly and a speedy recovery for Jacob.
Thank you as always for all of the thoughts and prayers. We hold you all dear to our hearts!
The Baker Family