Jake Update

Jacob is doing well. I have been a nervous wreck without nurses lol but hanging in there. I have the meds and feeding down. It is a hectic schedule but getting used to it now.

Jake has been having a lot of gas pain. When he eats he ends up crying by the end of the feed. I am going to talk to them about it on Monday but for now I vent him often. His g-tube spot looks red but they said that the antibiotic he is on is what they would give for it anyway. Again I will show them on Monday at our followup.

I remember Aidan had a hard time with gas also. I just hate seeing him in pain, especially because it can effect his SATS and heartrate when he gets upset.

The first night I did not sleep AT ALL. I was to nervous. Last night I got a full night sleep except when Jake woke up with Gas pain around 2am. He has been awake a lot today so hoping he sleeps well tonight. We had a good day today. Even took him outside for some fresh air. It was nice and felt more like a "normal" life for a while.

Now for news that breaks my heart to write. Please pray for the Carpenter family. They were at CHOP the same time as us. They had their sweet baby girl Gweneth the week before we had Jacob. We grew close to this family and I am so saddened to hear that baby Gweneth passed away today. She lived a short 2 months but touched so many lives. Myers also lost his sister today, two day's after Gwen passed away. Myers and Laura were so sweet to us while we went through this journey together and I will always hold them dear to my heart. Please pray for peace for this family. I am completely heartbroken.

Hearing this news makes me realized how fragile our babies are and how every moment with our children is a blessing from God. These babies fight harder than anyone should have to. They are miracles! I fear for Jake every moment I am awake. I love my sweet baby boy. Please continue to pray for him as he continues on this Journey.

Thank you for your prayers.