First let's hear the great news...JAMES IS COMING HOME SOON!!! We met with his team of doctors today and they told us he should be coming home before Thanksgiving, probably during the week of Nov. 16-20! Praise the Lord!! I can hardly believe it. When they told us those dates I was in a mixed state of bliss and sheer panic. It's like going into labor...you know it's coming for 9 months beforehand, but when it actually is time, then it feels like it was suddenly sprung on you. :-)
We are absolutely thrilled that James will soon be coming home to join our family...for real...and enjoy all life has to offer beyond a sterile hospital room. The next week or so will be very busy I'm sure. Mon & Tues we have a follow-up kidney ultrasound for Maddie and visits with her doctor at OHSU, Thursday I have a 3-hour infant CPR class, and I'm sure we'll be in the NICU more than usual every day because we'll have to be trained on all the different aspects of James' care for when he comes home. Our little guy looks perfectly healthy on the outside (and he's now tipping the scales at 7 lbs 3 oz, can you believe it?!), but when you get him undressed it's like a medical mine field in there...central IV line in his chest (tomorrow), healing incision across his middle, catheter port coming out his right side and ostomy bag on his left side. Considering all that, he's a super strong boy who hardly ever fusses about anything and must have a very high tollerance for pain.
Now for prayers...
1) Tomorrow (Friday) around noon James will have a minor operation to place the central IV line in his chest. They'll have to make incisions in his neck and under his collarbone, thread a thin catheter tube into a main vein and then place a port in his chest. This port will be used to deliver his TPN (liquid nutrition of fats/proteins/carbs), which he'll likely be on for the first year of his life or more. They perform hundreds of these procedures a year, but of course there's always risks involved. James is anemic, so he was given extra blood products today to prepare him--please pray for minimal bleeding during the procedure & also that there wouldn't be any complications with his heart or lungs or infections.
2) He wasn't able to digest my breastmilk as well as they would have liked, so he's been switched over to a formula that has the proteins already partially broken down so that his intestines don't have to work quite as hard. Pray that he is able to absorb as many nutrients as possible from this new formula and that he can handle an increase in volume of formula.
3) The catheter in his lower intestines has been very problematic over the past week or two and has fallen out/been pulled out at least 3 times. This, along with other factors, has made it so that the doctors are not going to be able to re-feed through that tube--a major bummer. Pray that his intestines be protected from infection and atrophy, since they will be sitting dormant until he has the re-connection surgery (in 6 months or so).
4) Pray for continued healing of his wounds, regulation of his feedings, and that Keith and I would feel confident learning all the medical techniques so that we can take our boy home & that there aren't any complications that would delay the schedule. Pray for good health for each of us and lots of energy to get preparations done before he comes home.