Thursday, October 1, 2009

Big Boy

Yay for our Big Boy! Last week they took out his ventilator and probably within a few days he'll get the nasal cannula off too. Last night his nurse helped Keith get him dressed in real clothes for the first time and he looks so cute and grown up! (He's gaining weight and is now 1 pound over his birthweight @ 4 lbs. 3 oz.!) He's been sucking on his (massive looking) pacifier like a champ.

Today his nurse Nicole mentioned that he was much fussier than usual and she thought he was getting really hungry. A couple days ago the surgeons had said that since he recently developed a hole/tunnel in his bowel (caused by the previous infection), they'd have to let that heal for 6 weeks before he could even start being fed. It was breaking my heart to think of my boy starving for another 6 weeks! (Not literally, since he's getting nutrition through IV's, but that doesn't give him the sensation of his tummy being full, so he always feels hungry.) Well, today we got the great news that the surgeons changed their minds and so today James got to start feedings with my milk!! He'll only be getting 0.5-1 mL per hour on a 24-hour drip through a tube in his nose down to his stomach (total amounts to about 1/2-3/4 of an ounce per day), but that's at least a start! If he tollerates that, they'll begin increasing the amount slowly over time. The big praise about being fed, aside from James' comfort, is that even this small amount of food going through his stomach and what's left of his small intestine will trigger the liver to start getting rid of all the excess bile it's been storing, which causes liver damage.

The docs said he could be in the NICU for another 3-4 months and when he does get to come home we'll need a lot of training on how to take care of the permanent IV's and feeding tubes he'll need throughout at least the first year of his life. Eventually he'll have another surgery to connect his small and large intestines back together, but not until his wounds have healed from the inside out, he's gained a lot more weight and hopefully his bowels have increased in length--probably at least 6 more months.

Hey, it's baby steps all the way and it'll be a very long road from here, but we are thrilled with all of his progress. :-)

Please continue to pray for:

1) the healing of his wounds
2) smooth and steady feeding process
3) decreasing levels of biliruben in his liver & that no permanent liver damage would occur
4) preservation of his large intestine for the future, since it isn't being used right now
5) complete and quick healing of the hole in his intestinal tract


Christine said...

Wow! He is a big boy! So wonderful to see him with cute monkey jammies on and no ventilator. He's precious, and will continue to be covered in prayer in the months (well, years ;) ) to come. xoxo

Heather Elizabeth said...

He is such a HUNK! Love his stylish outfit :) Still praying for you daily. Love you girl!

Amy Erickson said...

He is so precious all dressed up. Ethan is very concerned for James these days. His prayers and thoughts about James are so beautiful. I needed to reassure E that God is in control, funny how when speaking to my kids its often the message/lesson I needed. I will write the specific requests down and we will pray for him during our daily devo.

Allison McKenney said...

LOVE the coordinating outfit and blanket! He looks so cute! We will keep praying!


Katy said...

I'm crying I'm so happy! We pray for you all the time (no exgeration). The kids will volunterily (sp?) usher up prayers at random times. I cannot wait to tell them about this!!!! We will continue to pray. We LOVE you all!