OHS scheduled May 5th

Micah's open heart surgery (OHS) is scheduled for Monday, May 5th, at 8:30am at Children's in Milwaukee. Wow. I've been looking forward to having it scheduled. Now I look at him sleeping peacefully in his papasan swing and I picture him laying on a big crib in the PICU with tubes coming out of him and a big scar down his chest and I get sick to my stomach.

By the way... Micah weighed 10 pounds, 3 ounces at the pediatrician's office yesterday! :-)

One of these days I'll post about my Nashville trip...

Digestion

This feeding situation with Micah is going to send me to the funny farm (can one still say that or is it not PC?). After a week on Nutramigen, Micah's ability to tolerate a feed is getting worse, not better. He's screaming during every feed (and the majority of the night for the past two nights), unless I just sneak 3 ounces into his tube while he's sleeping. That's really not a good option, because he needs to continue sucking from a bottle (that ability is waning as well). And last night he had pink-tinted residual when I vented his tube. It only happened that one time, but yuck. The on-call pediatrician said that happens sometimes with babies with g-tubes. More information that would have been helpful to know earlier, though I still think it was probably a good move to get him the g-tube.

So, we've been advised by the gastroenterologist to change Micah's formula to EleCare (similar to Neocate). But neither of those is covered by our Rx insurance because they're "available" over-the-counter. Never mind that the product description from the manufacturer says, "for use under medical supervision." Let the appeal process begin (just what I need... one more thing to do). I find it hard to believe that it will cost us more to feed Micah than it does to feed Mark. That's crazy. Anyone out there work for Abbott Nutrition who could get us free samples? :-)

Quick sarcastic addition to this post: Doesn't the statement "It's not covered as a prescription because it's available over-the-counter" mean that you should actually be able to find it OVER A COUNTER somewhere?

Prayer request for heart surgery

Not much time to post today (I still want to post about my weekend in Nashville, but that will have to wait). But we have an important prayer request.

Micah's congestive heart failure is still not "under control." His tachypnia (rapid breathing) seems to be worsening and the meds are not helping. Though surgery *might* be more effective a few months from now (there's some research showing that low weight really doesn't impact the outcome as much as initially thought), Micah's cardiologist believes that sooner is better than later for him to get his open-heart surgery (OHS) to repair his AV Canal defect. She also thinks that his heart issues could be part of the reason that he is having such crazy digestion issues (so far, Nutramigen is not helping and he was screaming almost all night).

Specific prayers:
1. a surgeon in Milwaukee to agree that Micah is ready for surgery
2. an opening in the surgeon's schedule in early May
3. the measles "outbreak" in Milwaukee would be contained so that there is no delay in scheduling "non-emergent" surgeries at Children's Hospital (there are currently 3 known cases of measles and one case of rubella in Milwaukee... it's HIGHLY contagious)... by the way, the cardiologist wants Micah to continue getting some breast milk for the immunities... that doesn't jive with what the gastroenterologist recommended... who wins?
4. Micah would continue to be healthy (he currently is a bit stuffier than normal... please pray he's not getting a cold)

I'll post about this again in a couple of days when we will hopefully hear from the schedulers in Milwaukee. Just a reminder... if you'd like to be alerted when I update the blog, you can receive an email the night after I post by entering your email address on the right column. =>

March For Babies

We're coming up on the annual March for Babies fundraiser for the March of Dimes. We're not able to walk in our local event. But if you're interested in helping out the March of Dimes, please consider sponsoring our little buddy, Chase. Chase's dad, Jason, went to grad school with Mark. Chase's mom, Elizabeth, has been a great encourager to me. They live in Charlotte. Would you consider sponsoring Chase's team? Just link here. If you'd like to read a bit more about Chase, you can visit their family's blog. Chase was born last fall at 26 1/2 weeks and he's doing great, thanks in part to research done by the March of Dimes. The goal of the March of Dimes is to improve the health of babies by preventing birth defects, premature birth, and infant mortality. We received a lot of helpful information from the March of Dimes while Micah was in the NICU.

Beach

Mark and Nathan went to St. Simons Island, GA, to visit Mark's parents (they vacation there every year) last weekend. Their trip was shortened by a day because they had to fly out 24 hours after they were scheduled to go because I came down with the nasty stomach bug that has apparently been going around the Valley. There was no way I could have taken care of Micah that night. My mom came up last Saturday (a couple of days sooner than planned) so that Mark and Nathan could leave. Have I mentioned lately that she's my hero?

Anyway... Mark and Nathan didn't get the best weather for their trip. And their luggage didn't get there for almost 24 hours after they did. But it was good for them to get away. Here are some photos of Nathan on the beach.

note the tiptoes in the first photo

The view from the condo balcony with Mark's parents. Nice, huh?

GI specialist

Micah's tummy troubles have continued so he was seen by a gastroenterologist (sp?) on Thursday. He believes Micah has a dairy and soy allergy so we're now going to the "liquid gold" formula and no breast milk. So after over 3 months of pumping, this is the straw that broke the camel's back. There's "a chance" we could add breast milk back into the equation in a few weeks, but only if I go strict non-dairy and non-soy. According to the doctor, it takes about 2-3 weeks for it to get out of my system (and Micah's). I don't know whether to donate the month's supply of breast milk in our deep freezer or save it and hope that Micah's tummy can handle it later on.

I've heard we might be able to get this super expensive formula covered by insurance. I'll check on Monday. Anyone out there with experience in that process? Please feel free to comment and advise.

Playdate

On 4/1, some new friends came over to play. As you can see by this photo, Logan breaks down the stereotype that babies with Down syndrome are small (Logan is 10 month old and weighs about 24#!).

Nathan and Devin had a fun time tearing up the basement, and it was great for me to spend time with Melanie too. Her little guys are about the same age spread as ours. Please pray for Logan on Friday morning when he will be sedated for a hearing test. If you'd like to "meet" Mel and her family, you can see them on her blog.

ER trip #3

Yes, it's true. We had another visit to the ER. Micah's MIC-Key button came out again on Monday 3/31. I was home alone with the boys and it was about time for Nathan's nap when it happened. And the kicker? The balloon was fully inflated! Last time, the balloon was deflated, which is how it's normally taken out anyway. It's not supposed to come out with the balloon inflated. It's a lot bigger that way.

Because it was Nathan's naptime and I had no idea how long we would have to wait in the ER to see a doctor, I thought it would be best to not bring Nathan with us. I couldn't reach Mark because he was in meetings. I called our neighbor, Salina, on her cellphone and she quickly came to my rescue (interrupting a workout at the Y). She put Nathan down for a nap for me and stayed with him until we got back. My hero!

Though Micah was far from pleased that the insertion of the button had to happen again, it did go much smoother this time around. Why? Because our home health nurse had armed us with a simple little feeding tube (used for ng-feedings). The idea was to have that put in right away by a nurse in case we had to wait too long. We didn't have to wait long at all. But the ER doctor was quite happy we had it because he threaded it through the button and used it as a guide. Worked like a charm (Micah would disagree... I hate seeing him scream like that).

We were concerned that because the button came out with the balloon intact, Micah might need to be sized for a larger button. But the ER doctor put an extra ml of water into the balloon after he put the button back in. But we saw Micah's surgeon for a checkup on Friday and he said it was fine.

That was an interesting appt. The nurse came into the room to start the assessment (at which point I told her he had just been weighed on Wed at cardiology... do we really need to go through this again? fortunately, not). She also brought in two MIC-Key buttons: one for replacement then, and one to take home as a spare (wouldn't THAT have been nice to have two weeks ago!). I informed her of the events of the previous 2 weeks and questioned whether we really needed to replace his button. I mean, really... it's gone in and out twice in two weeks... do we have to torture him again? Fortunately, not.

His surgeon checked the g-tube site, said it looked good, and we had a chat about the resident not calling us back on Good Friday. Because it's a new month, it's not the same residents on rotation now, but he said he'd bring it back to the team to let them know what happened. We also chatted about Micah's ongoing tummy troubles. He doesn't scream during every feeding session, but still occasionally. He recommended we try a different formula and see a GI specialist. After discussing the formula thing, Mark and I decided we're going to stick with the soy thing as Micah is at least improving. I don't want to change it again if we don't absolutely have to.

Photo shoot

Our dear neighbor, Heidi, came over to take some photos of the boys. They turned out great! If you live close to us and are thinking about having your kids' photos taken, she does a great job. She took the new photo of Micah on the right margin. Here are some others for your enjoyment. If you're local to us and interested in her work, see her website.

eeek

Two weeks have again flown by. I put out a long post a few weeks ago... a lot longer than most could swallow in one sitting. So I'm going to break these down into shorter posts as I attempt to update you while Nathan and Mark are out of town.

Note the new photo of Micah on the sidebar. Also note that I added a link to enable you to receive an email when there's a new posting on this blog. Just enter your email address and you will receive an email asking that you confirm that you really requested this. Once you click through that email to confirm, you will then receive an email letting you know when I've posted something new on the blog.