I wanted to start with the labor story but I’ve been a bit busy since Levi was born on May 11th. This is the brief summary of where we are now for those who are only following our story here. If you are following us on Facebook, you’ve probably already read this:
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On Friday May 13th Levi, who was 2 days old, had surgery to repair a duodenal atresia or blockage in the upper intestin. His pancreas had formed wrapped around the intestine and blocked it from growing right so that was fixed and stitched back together.
We waited days for his digestive system to wake up. He was on IV nutrients and a stomach pump until then. Once he started eating they didn’t want us to go home until he started eating full feeds consistently which we knew might take longer than usual for babies because he has Down syndrome and babies with that tend to take longer to get the muscle strength built up.
But by Friday May 20th he was on his first feeds and doing great! The Dr. thought we’d be home by Sunday and they started preparing everything for us to leave. But by Saturday we realized he wasn’t eating full feeds for anyone but me and anytime I couldn’t be there he had to have some of the food fed by stomach tube.
Then also on Saturday they put him on oxygen to treat high blood pressure in his lungs and told us he’ll probably go home on oxygen and be on it for a while.
For the next few days we tried and tried to get his feedings to be perfect while they kept upping his calories by adding formula to the breastmilk to try to get him to grow.
Things get a little fuzzy for me here but I think on Thursday morning the Dr. called and said his liver wasn’t working properly. Then they did x-rays and found bile in his gallbladder. Nobody knew why yet but he wasn’t showing signs of the really scary stuff so they decided to just give him a medicine to flush out his system. It was supposed to take a week or so to work because it has to build up in the system but they didn’t get to it. Just before the noon feeding, he did this 5 min of screaming like he was in severe pain. It really scared both Josh and I. The noon feeding went really badly and even for me he wouldn’t eat he last third. He then got really really lathargic and sleepy and each feeding he ate less and less.
On Friday they called and said there was blood in his stools so they were stopping feedings and putting him back on IV nutrients and a stomach pump.
On Saturday they learned he had a Urinary Tract Infection which seems to be unrelated to all of this, just one more thing, a fever and some bacteria in his digestive system but they didn’t know what or where.
Last night green bile started coming up the stomach pump. So this morning they called and said he was having more bloody stools, bile in his stomach, his IV’s aren’t working anymore and one x-ray showed a possible hole in his intestine. They said a surgeon would be there at 6 to examine him.
His belly was so swollen and red and he was clearly miserable.
By 8 he was in surgery. Part of his middle intestine had died and blown out. His belly was filled with bile. They cleaned it out and then removed about 12 cm of the intestine and stitched it back together. They don’t know why this happened. It’s not related to the earlier surgery but they said it would be very very rare if it happened again.
He will be unconcious until at least tomorrow and on IV nutrients until at least next week while we again wait for his system to heal. Then we start over with trying to get him to eat so that he can come home. All the other issues are being treated by high does of anti-biotics for now.
Please pray for him to recover and for our family. I’m afraid the stress may make some of us fight but for now it’s bringing us all closer together.
Thank you to everyone who has offered to help! I wish there was stuff I could ask you to do but for now the only thing I need is prayer. I desperately want my son healed so he can come home and we can all be together.