A Little Something Extra

Sunday, July 13, 2008

At long last… Micah’s health update

6month check-up – Micah weighs 13lbs 3oz and is 24” long. This puts him on the “normal” weight chart for the first time in the 1st percentile and bumps him up to the 26th percentile on the Down syndrome chart. He’s a couple of check-ups behind on his shots, but we’ll get him caught up by one year.

Heart stuff – Micah saw his cardiologist last week. She doesn’t want to see him for FOUR MONTHS. Wow. And he’s now off all of his heart meds except one. His blood pressure is good, his oxygenation is 100%, and his respiratory rate is good. He’s still retracting with his breathing, but that should tone down a bit over time as his body realizes it doesn’t have to use so many muscles to breathe. At his next appt he will have an echocardiogram to assess how well his new valves are working (in a nutshell, his surgery was to patch two holes and create two valves from one big hole).

Eating – Micah doesn’t eat anything by mouth. Yes, that’s really hard. It’s hard enough for a woman who wants to nurse her baby to find out that she can’t (for whatever reason). But tack onto that the inability to feed your baby with a bottle, and it just, well, stinks.

Gastrointestinal – This appears to be Micah’s biggest hurdle at this point. We’ve been told to “reset” our expectations regarding Micah’s feeding tube (per his GI doctor: “I’m fairly confident that Micah will be able to get rid of his feeding tube someday… I just don’t know whether than will be when he’s 1 ½, 2, 3 or 4 years old.”). Ouch. That really hurt. And that’s basically why I haven’t updated the blog on Micah’s health lately. We have to draw gas out of his stomach (through the g-port) because it gets distended and causes him to urp. He still has reflux, but he’s on a high dose of Prilosec to limit the level of acid so that it doesn’t harm his esophagus.

Duodenum – Still not sure if it’s working. His j-tube feeds him into his jejunum, which means that the majority of his digestion is done after the duodenum. The GI doctor told us to start trying an ounce a day into his g-tube to see if he’s able to cope with food going through there, then we up to two ounces, and then three ounces. If he tolerates that, then we might be able to start solids soon. There might be an issue with a high volume going through his g-tube because of the j-tube sort of blocking the path downward. I guess we’ll find out. But he’s been able to digest all of his saliva and stomach juices, so he thinks this should work.

Feeding tube – I have a love/hate relationship with this thing. Logically, it needs to be skewed more toward “love,” because without it, I’m not sure whether our little guy would be growing or even living. But he has to be connected to a feeding pump for about 21 hours/day and he has a multi-port tube sticking out from his clothing. A friend of mine’s daughter asked about it at church a few weeks ago, and I told her that, “He needs it because he doesn’t know how to eat.” This little girl’s sweet brother, Will, chimed in and said, “Yet.” I almost cried.

Prayer requests:
* That Micah would tolerate the feedings through his g-tube so that he can start solids
* That Micah would not develop an oral aversion to solids like he has with liquids
* That Micah would get more comfortable and able to deal with the pressure in his belly
* That Micah’s neck strength would increase and he would use his arms more

* But most importantly, that we would truly rest on God’s strength: “I can do all things through Christ who strengthens me.”


Michelle said...

Micah is beautiful and I can't wait to see him again!

I'm glad to hear his little heart is doing so well! Sorry about his feeding. I can only imagine how difficult that must be.

Please - let me know if there's ever anything I can do!

Melanie said...

Micah looks fantastic! I can't image how hard it is to be still dealing with so many issues. You are so strong. I wish there was something we could do to make things a bit easier...please let us know if we can do anything!
I just want to give him a big hug! He is SO adorable.

Rachel said...

Micah is absolutely beautiful. Looks like his hair is coming in so good and it even looks lighter. I read about Micah at every post and have fallen so in love with him...he is just a doll. Add me to your list of Prayer Warriors! I pray for him daily and I hope his eating issues are resolved soon.

Your such a lucky mom to have your boys!


The Lenda's said...

Praising God for the progress Micah is making and praying for patience for you and Mark as you deal with his feeding issues. Praying that he gets rid of it sooner then later. May you have peace as you trust God to continue to help you to care for your sweet boy one day at a time.
Hugs Rachel

Andrea Marcks said...

Thank you for the update! I think about him constantly and am always praying for him. I love the pictures - I could just eat his cheeks!!!! His smile is priceless. Sorry to hear about the feeding issues, but at least his heart is doing well. Take care.....

Mindy said...

Thanks so much for the update. You, Micah, Nathan & Mark are in my prayers.

Momma M said...

Micah will be in our thoughts and prayers. He looks like he's doing a GREAT job with his PT. Yay!

Oh, and I *think* you live in the same town as my uncle. I always think of it when I see the grates on the street (don't want to say the town name on your public blog).

RK said...

How amazing that our stories are so similar. So nice to "meet" you all! Sounds like you have some good buddies (especially Michelle and Melanie!) and your family is just precious. Thanks for coming by Braska's blog and saying hello!

Kim said...

We will be praying for Micah's feeding issues. He is such a cutie and that is great news about his heart!