Snuggles and 4th floor

We were able to snuggle with Micah yesterday, praise God. He didn't make it to the floor yesterday, but his voice improved so we were able to start feeding him. Nathan and I spent some time at the children's museum yesterday while Mark spent time at the hospital.

This morning I arrived in Micah's room to see that he had been completely weaned off oxygen overnight. Look, Mommy, no O2!

Micah is now out of the PICU (as of about 11:00am today). He's sharing a room with another baby, so I don't think I'll be sleeping there tonight. I had planned to room in with him, but the thought of being sleep-deprived due to TWO babies crying is a bit too much for me, especially since one of them isn't mine.

I don't know how long Micah will be in the hospital. His bloodwork showed elevated white counts this morning, so they'll be watching him for infection. I hope we can go home in a few days.

Here's a shot of Micah with the surgeon who repaired his heart. Thank you, Dr. G!

This is nurse Kim. She's the one who spent all day on May 5th coming out of surgery to tell us what was going on with Micah. She had a long day that day too.

This is some of the posse (aka, the Critical Care doctors who were caring for Micah in the PICU)

Improvement!

Micah is having a good day today. They took out his chest tubes this morning and he didn't enjoy that at all, but then they took him off the CPAP around lunchtime and he's doing great. Another line was removed and they're now giving him food through his feeding tube. He still doesn't have much of a voice and there's some concern about nerve damage so they're wary of letting him take anything orally yet. But there are now only two things that need to happen before he will be released to the floor: 1) remove the CV line and 2) wean him off one more heart med and replace with another that isn't on a continuous drip.

So it looks like he might be moved to the floor tomorrow. Praise God! After that, I think there are two more major things that need to happen before he's released: 1) increase his feeds to full volume and have him "tolerate" the feeds (aka, no puking or screaming) and 2) no more oxygen.

He's kicking his legs, moving his head, and even SMILING. Can you believe it? It's amazing how much better he must feel today. Once his CV line is out, we'll be able to hold him with ease. Mark is coming down tonight. My mom is heading home tomorrow so she's going to bring Nathan here on her way through Milwaukee. I'll spend the day with Nathan and Mark will spend the day with Micah. Then Mark will take Nathan back to Neenah and Mark's mom will take care of Nathan on Thursday and Friday. Maybe we'll even get to bring Micah home on Friday or Saturday!

Enjoy the new photos... I certainly do!

Trying to rip off his nasal cannula (he's frequently successful, but I'm trying to keep him calm enough so that they don't have to put the nasty patches on his temples)

He occasionally looks like he's trying to lick the cannula off his face

This is the closest thing to a smile I could capture on film

Thanks for praying for our little guy. He's made huge steps forward today.

Photos of Micah

Check out my scar and my cool headgear! (pay no attention to the nasty bruises from my IV lines)

Don't I look like a baby Kramer getting cross-eyed? (finally, a sponge bath and hair wash yesterday!)

CPAP still on

Sorry, still no photos to post of Micah with his helmet/snorkel/elephant trunk apparatus (AKA the CPAP). I'll try to email a photo to Amy tomorrow and ask her to post it.

I was really hoping the CPAP was going to be a 24-hour affair, but no such luck. The new attending MD (they switch every week) said that Micah needed to get his voice back before he'll talk about stepping him down. Great. And I already miss last week's attending. Apparently the nurses like this week's attending better, but I don't care for his bedside manner.

Micah had a very rough spell this afternoon and was completely inconsolable. It was heartbreaking. He was crying so hard, but not making much noise. Morphine didn't even do the trick. His nurse had to add a sedative. Maybe he will be more comfortable tomorrow after they take out his two remaining chest tubes (okay, maybe he'll be more comfortable a few HOURS after they take them out... he screamed for a while after they took the last two out on Saturday). All I want to do is pick him up and snuggle him to sleep. I can't stand it.

I'm sick of "sad jail." I know that Children's Hospital is supposed to be a place of hope. But I still see it from a sad perspective. It's my realistic side coming through, I guess (Mark will call it pessimism, but I prefer to call it realism). I enter in the morning to see moms in their slippers going to get a cup of coffee. They've been with their sick child all night and just need a break. Or I see moms pushing their disabled teenager in a wheelchair into the Clinics building for one of likely multiple visits that week, looking like they desperately need a break but trying to keep smiling.

I have to say, that I don't feel like I'm entering prison as much as I did when Micah was in the NICU after he was born. Maybe a good portion of that is because I'm no longer pumping so I at least don't have that piece of equipment to worry about and I don't have to be doing something I hate every three hours. The nurse asked me if I was headed home when I was walking out this evening. "I guess that depends on your definition of 'home,'" I said. I can't stand that Micah has been in the same bed in the same room for 7 days. I know he won't be moved to the 4th floor until he's off the CPAP, and I don't think they will move him on high-flow either so it might be a while. His lungs are still rather sick.

"His lungs are sick." That's what the nurse told us around 6:00pm last Monday while we were in the surgery waiting room (after all others had come and gone). That's when they were having a difficult time getting him off the bypass machine. That was a long evening.

Micah had his first echocardiogram since surgery today. It showed that he has a small amount of leakage through the valve on the right and "moderate regurgitation" on the left side. According to the cardiologist, that regurgitation is exaggerated by the inefficiency of his lungs so it should improve as his breathing improves. Please pray that is the case.

I hate that we're now needing to plan for another weekend in Milwaukee. I don't know how much longer we will be here, but the fact that Micah is still in the PICU does not bode well for us leaving soon. I just want to get him home so that we can move forward. That statement alone makes me cringe. What does that look like for him? He's four months old and can't hold his head up. How much of that his weakness due to a weak heart? Or is it more associated with the fact that he has Down syndrome and has low muscle tone? Time will tell. But I'm so jealous of the family that is leaving tomorrow with their baby girl whose heart was repaired a week ago and will likely never see Children's Hospital again and will likely develop at a "normal" pace.

Sorry. Having a pity party tonight.

Micah's weekend experiences

(I wrote this hours ago, but I'm just now getting around to posting)

Yeah! Micah was extubated yesterday. There was an area of one lung that had collapsed. He had to get some extra pumps of 100% oxygen. He did fairly well yesterday (Saturday), but he was put on high-flow oxygen after just a couple of hours. Then this morning they took him off the narcotics and he was more than irritable when we arrived this morning (if his voice was working, we would likely have heard him down the hall because he was screaming but unable to make noise). His blood pressure was crazy high. He's had some more oxygenation issues today so now he's on CPAP (looks like a football helmet with a snorkel on the nose). Ugh. Are we ever going to get out of the PICU?

But... when he was irritable this morning, he actually orally took two bottles of two ounces each. Rock on, little guy! He hasn't done that in two months. Now we just need to get him off the CPAP so that he can eat again (he can't eat while on CPAP). It stunk having a new piece of equipment enter his room (and they're not comfortable taking away the ventilator yet so it's not as if the CPAP replaced anything). He's no longer on one-to-one care from a nursing perpective. But we're still in the PICU.

Micah was so agitated this morning that we didn't feel we could leave him alone. So Mark stayed behind while I went to brunch with Nathan, my mom, Mark's parents, Mark's brother, and my brother and his fiance. It was great to be with everyone at lunch, especially my little Nathan, but I missed Mark and Micah. It had been a week since the four of us were all together. And no luck for a Mother's Day surprise to check out of the hospital. But enjoy the new photos:

Alert on Friday morning for the first time

Saturday before extubation with his lion (thanks, B family!)

Saturday after extubation (he just wanted to lick his thumb but he wasn't quite strong enough to get his hand to his face without help)

Resting on Saturday

Attempting to hold Micah on Saturday (it didn't work... he was so uncomfortable I just cried)

Nathan at brunch (chocolate pudding did a job on his face)

Mother's Day with my boys (before addition of CPAP)

Happy Mother's Day, all you moms out there. Snuggle 'em if you got 'em. And to those of you for whom Mother's Day is somewhat sad because your mom or your child is with Jesus instead of with you, or you're missing a child you've been dreaming of for so long, may you find rest and peace in Christ.

AV Canal Details

Micah is sort of alert this morning. I walked in and his eyes were open (sort of rolling around a little, though). His blood pressure went up while I was there because he got rather "excited" to see me. I just wanted to scoop him up and make everything better. Oh, I hate not being able to hold him.

His pain meds are down. He's not as puffy today so his body is removing more of the excess fluid. More importantly, he's not on the pacemaker anymore and his heart rate is doing great (about 140 bpm). There's a possibility that they will try to take him off the ventilator later today. Please pray that he would be able to come off the ventilator the first try. That's one more step toward getting out of the PICU. After he's extubated (off the ventilator), the next step is to remove the chest tubes which are used to drain excess fluid from his chest. I'll try to update again later today after rounds. Oh, by the way, Santa is back today! :-)

AV Canal defined - Some of you have asked what was actually done in his surgery and why. Here's a brief summary in Jennie language (those who really know medical stuff will likely find this inadequate at best - Noel or Andy D, if I get something wrong, please comment). An atrioventricular canal defect (AV Canal) is basically where the inside of the heart does not completely form in utero. It's not as simple as your standard holes in the heart. He did have holes, both between the atria (ASD - atrial septal defect; the atria are the top parts of the heart) and the ventricles (VSD - ventricular septal defect; the ventricles are the bottom parts of the heart). But he also had a big hole in the center, meaning that rather than having two valves separating, top to bottom, the atria and ventricles, one on the left and one on the right, he had one big valve in the middle. This is referred to as a "complete AV canal defect." There was 100% mixing of good blood (oxygen-rich) and bad blood (oxygen-poor).

Micah's surgery was longer than initially planned because the middle part (creating two valves from one) was a bit messier than they appreciated on echocardiograms (ultrasounds of his heart before surgery). Dr. G spent a lot of time on the valves to minimize leakage and hopefully prevent future needs for surgical intervention.

Myanmar update - The news this morning said that the UN is halting aid to Myanmar because the Myanmar junta ("government" in a very loose description) has siezed everything coming in. Please consider sending aid to Asia Heartbeat since Bill is in the country and is able to distribute supplies to people who really need the food, etc.

Myanmar relief

On a separate note... we have a dear friend who is a doctor in Myanmar. I've known Bill since 1993 and he emceed our wedding reception.

Bill was in Thailand when the cyclone hit. He has finally been able to get back into Myanmar to assess the damage. I'm hesitant to post his entire letter, but suffice it to say that all of their orphanages have been affected. There will be many more people who will die from lack of water and food. It's been difficult for foreign aid to get to places where it is most needed. But I know that money sent to Bill's organization will actually reach people who have been affected because he and his group live and work there. They are beginning with purchases of rice, beans, cooking oil, candles, water treatment kits, plastic sheeting and charcoal. They also need to rent vehicles and cellphones.

If you would like to give to the relief effort there are 2 options. You can give by credit card on their website at www.asiaheartbeat.org or send a check by mail to Asia Heartbeat, PO Box 63720, Colorado Springs, CO 80962-3720. Asia Heartbeat's overhead is minimal, and your money will go directly to relief efforts if you so desire.

Thank you for praying for Bill, his wife, the staff and children at the orphanages, as well as the rest of the country of Myanmar.

Chest Closed!

The surgeon just came out to talk with me and she said they were able to close Micah's chest. Thank you, God! She added two more pacer wires to help pace his heart for a bit, but she said the procedure went very well. Thanks, everyone, for your prayers.

Quick Update on Micah-Thursday Morning

The PA came in this morning and said they had a surgical case cancellation this morning so they're going to do Micah's exploration at 9:45am instead of 2:00. Please pray that goes well and that the surgeon is able to close his chest. He's still very swollen this morning, but he's starting to move a bit. He was moving his tongue and wiggling his hand a bit so I put his little hand by his mouth. He started moving his tongue more. Sweet little boy.

PICU day 3

The good news of the day is that Micah's internal oxygen saturation levels are going up, meaning his heart is doing a good job of pumping oxygen to his brain, kidneys, etc. The price he's paying for that is that his heart rate is still quite high (currently 195 and it's been up to 206 beats per minute). It's too high for the pacemaker to take over (he "competes against it").

The surgeon is going to do an exploratory surgery here in the PICU tomorrow at 2:00ish. If she can close his chest after that, she will. But she doesn't feel comfortable closing his chest with his heart rate as high as it is. So please pray that his heart rate would go down overnight. It's possible that some of the leads, etc., inside are irritating his heart so taking some of the stuff out might help lower his heart rate.
** I typed that earlier, and I just called his nurse to ask about him before I go to bed, and his heart rate has slowed enough that they're now able to pace him at 170. Praise God! I think that's still too high for the surgeon to close his chest, but it's a lot better than 200.

When I was getting ready to leave this evening, Micah's blood pressure started increasing and his attending thought he might have some junk in his lungs. That did not appear to be the problem. But they've given him more pain medication and it appears to be lowering his blood pressure so the little guy's pain level was probably too high and that was causing his blood pressure to go up. Oh, how I wish I could just fix him up and take him home.

Micah's cardiologist from the valley called me in the room today just to check in. She'll be here in Milwaukee tomorrow so she's planning to stop by. It was very kind of her to call and check in.

I'll try to update after the exploratory is finished. Thanks for your prayers, everyone.

Micah - Tuesday morning

Here's a photo of Mark with Micah before we handed him over.

Here's what he looks like now.



And here's a photo of Micah's nurse for 12 hours today. His name is Jeff and he's worked in the PICU for 24 years. He tells little kids that this is Santa Claus' job during the off-season and they totally buy it.


7-10 days has become more like 12-14 days. It appears he will likely be in the PICU through the weekend. I just spoke with the attending and she doesn't think they'll close his chest until at least tomorrow. After that, it will be a couple of days before they take him off the ventilator, and a few days after that before they'll move him to a room.

We got into the PICU around 11:00 last night. We thought we would just stop in, see him in his new location, and head to the House. But there was no way we could leave with lots of doctors in his room trying to figure out how to best control his heart rate, which was 188 bpm at the time.

He is doing better this morning. They've gotten his heart rate down so they are able to control his heart with a pacemaker. He has five drainage tubes from his chest and lots of leads for the pacemaker, etc. He has been on a cooling blanket to help keep his heart rate down. I hate holding his hand and having it be so cold.

I just want to smooch his face and snuggle him. As you can see by this photo, I can't do that right now.

There's a couple who spent a good part of yesterday afternoon in the surgical waiting room with us. They're from Wausau and their pastor came in last evening and stayed the night at a local hotel to be with them. This couple is staying at the RMH as well and ironically are in the room next door to us and their little girl is in the PICU room next to Micah's. Anyway, their pastor came in and prayed with us for Micah this morning. He's a super great guy. He shared from Philippians 4. I referenced the same passage back in November.

In the PICU

10:00 - Micah is finally in the PICU (Pediatric Intensive Care Unit). The doctors and nurses wheeled him past the waiting area for us to see him. We haven't been allowed in the PICU yet, but we'll go in soon and just check out his room and head off to get some sleep.

It's probably going to be a long recovery process for our little champ. They had to leave his chest open because of the amount of time he spent on the bypass machine and he's pretty swollen. We're hoping they'll be able to close his chest in 24-48 hours. He's quite sedated and will be for a while. He's on meds to help his breathing and minimize his blood loss.

I don't know how to ask for prayers except for the obvious.

Urgent Update from Jennie

6:45pm - Micah is still in surgery. The valve repair took longer than expected. They had to put him back on the heart/lung bypass machine twice. They've given him extra medications to help his lungs because they are not responding well. But they've now taken out his canula's so they believe that he will not need the bypass again. They might need to keep his chest open tonight. He's apparently quite swollen. We haven't seen him since we handed him over at 8:45am. It's been a long day.

The Latest from Jennie

1:30 - Nurse Kim came out to talk with us again. Micah is still on the bypass machine because Dr. G is still working on his valves, which is the most tedious and detailed part of his repair. She's going to come out again at 2:30 to give us another update. Please pray that his valve repair would be finished by then and she's moved on to his ASD.

I'm still in awe of this whole process. Your heart is roughly the size of your fist. So Micah's heart is roughly the size of HIS fist, which, trust me, is not very big. Think four chambers, a couple of holes to repair and a valve to separate into two. And Dr. G's hands are in there working on this (well, okay, her hands are not really in there, but she's guiding instruments that are in there). Thank you, Lord, for gifting surgeons with the skills to fix our little guy's heart.

Update on Micah

Here's the latest from Jennie:

9:30am - Micah is currently in surgery. The surgeon's nurse just came out to tell us that they're still placing lines in him and that he'll be on bypass in another hour or so. The surgeon told us this morning that we would likely not see her come out until about 3 or 4 this afternoon. She will use an artificial patch to repair the VSD (hole between the ventricles), Micah's pericardial tissue to repair the ASD (hole between the atria), and stitches to repair the valves.

Micah had a terrible night last night. In retrospect, we should have slept at home last night and driven down here early this morning because none of us got any sleep. Micah cried a lot. Then as I was moving him in the crib, I got his g-tube caught on my shirt which caused his mic-key button to come out (again). Yes, it's true. Micah's 4th trip to the ER was the morning of his open-heart surgery. Mark took him in (guess it's a good thing we were across the street). There wasn't an open seat in the waiting room and the wait was estimated at 3 hours. Mark asked if he could take Micah somewhere that wouldn't be around all the sick people (after months of keeping him away from illnesses, the last thing we need is for him to get sick this week). They had mercy on him and ended up putting a tube in his belly immediately instead of making them wait. They would have taken his mic-key button out during surgery anyway. But it was quite kind of them to just take care of it in triage so that they could get out of there. And I think they appreciated getting a smile and a thank-you out of Mark, since most people they see at 1:00am are not smiling.

As soon as his button came out, Micah stopped crying. You would think the opposite would occur, since it surely is painful for it to come out. But really, how much of his current tummy trouble is that his mic-key button is bothersome? Micah was talkative with the nurses and doctors this morning... such a sweet boy.

Thanks for praying for our little guy.

Too many cooks

If there's one thing I miss about the NICU, that would be the opportunity to get all of Micah's caregivers in a room at the same time to discuss his care. Here are who we are dealing with these days: pediatrician, cardiologist, gastroenterologist, endocrinologist, general surgeon, cardio-thoracic surgeon, speech therapist, physical therapist, and home health nurse.

Micah's reflux is getting worse. He screams a lot during his feeding sessions. He's refluxing up but not spitting up too much. It seems to go sort of into his sinuses. That must really hurt. I asked the home health nurse on Wednesday about increasing his dosage of omeprazole (Prilosec). The original Rx was written by his pediatrician, who was out on Wednesday. The ped covering said since he was being seen by GI and he had heart surgery coming up, they didn't want to mess with his med. Okay, so let's try cardiology. Nope, they don't want to mess with it because that's not their gig, but it doesn't affect heart surgery if someone else decided to raise his dosage. Okay, let's try GI. Finally, this afternoon the home health nurse received word from the GI nurse that his current dosage is sufficient.

Excuse me... have you tried to feed this child? And how is it possible that the dosage is still correct if he has gained over a pound since the last increase? Long story not short enough, I told a nurse in GI late this afternoon that if no one called me back within 10 minutes to authorize an increase in his dosage or offer another solution, I would have the on-call gastroenterologist paged. That wasn't what she wanted to hear close to close-of-business on Friday (I inferred that she was fairly ticked off). Anyway, it must have worked, because I did receive a call from Micah's GI doctor a few minutes later. After a long conversation, which included him questioning why I didn't try EleCare longer than three days (ummm... maybe the blood in his stomach was something I wasn't comfortable with?), we finally got to the dosage concern. He thought if it weren't for heart surgery, he would consider starting him on reglan. I finally convinced him that Micah's increase in weight should justify an increase in the prilosec so he calculated how much Micah should be receiving based on his weight. What do you know? Rather than 1.6ml's, he should be getting 2.8ml's. That's a pretty big difference, don't you think? And I think the problem is that no one bothered to calculate based on the concentration of medication in the suspension. I think they assumed a higher concentration than is actually in the suspension.

If you are sensing that I'm not a big fan of the medical profession right now, that's actually not true. We had a good trip to Milwaukee today for Micah's pre-op appointment. We really liked the nurse and PA who cared for him today. And the phlebotomist is the same one who did a great job on Tuesday (we waited a long time to get in, but the result was positive). He also had an EKG and a chest x-ray. Micah's least favorite part of the day was the left-side-lying x-ray where they held his hands above his head. For some reason, he dislikes having his hands above his head anyway, so holding them down while lying on a hard table was just not fun. Otherwise, he did very well. We didn't get to meet the surgeon because she was called into an all-day surgery. But she did call us this afternoon and asked if we had any questions prior to meeting her on Monday. She seemed very nice.

The PA told us to expect Micah to be in the hospital for 7-10 days, two of which will likely be in the PICU. But I'm going to pray for a special Mother's Day present, which would be having him home after 6 days!

Endocrine

Since we don't have enough going on these days, we decided to add another trip to Milwaukee for Micah to see an endocrinologist (sense the sarcasm?). Seriously. I was looking through some paperwork from the NICU at TC and saw that he had an elevated thyroid level at his last bloodwork drawn before he went back to Milwaukee for his g-tube. No one ever mentioned that to me. And thyroid issues are fairly common in children with Down syndrome.

Early last week at his interim pediatrician's appointment (congrats, Dr. R., on baby boy #3, but your timing for maternity leave could have been better :-) ), I asked when they would test his thyroid level again (not knowing that he had elevated levels while in the NICU). He told me they would test it again at 6mos and one year. But then I found this information in his paperwork and called him on Friday. He said to bring Micah in on Friday evening for a blood draw. He got the results Saturday morning and called the on-call endocrinologist at Children's who said they should see Micah early this week. Nice. I'm glad I noticed it. But who wouldn't have noticed it. That's why lab reports show "in range", "L", or "H" by the results. Strange how the multiple H's weren't noticed by anyone else. Maybe strange isn't the best word. Maybe crappy is a better word. I'm tempted to say irresponsible, but I hate to point fingers.

Anyway, Micah is now on synthroid. Because he doesn't take enough medications...

Sorry for the negative ranting. Maybe I'm a bit stressed about our upcoming week.

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.

Funny boy

I do a horrible job at documenting things in Nathan's baby book so I just have to start adding some of his stuff to this blog. Tonight was so funny. Mark and I were getting him ready for bed and we put on his jammies (red fleece with a reindeer head on the chest). As I was zipping them up I realized they were small and I commented to Mark, "This will be the last time he wears these jammies." Nathan then tried to straighten his legs and realized he was uncomfortable. He whined and said, "No, I want frog jammies... Baby Nicah can wear this one." "Sorry, pal. Frog jammies are in the washer. Tonight you get basketball jammies." But you would have thought that was the end of the world.


He does say "Nicah" when talking about his brother. He has a problem with m's. And let's not forget to mention that "baby" is the only b word he can say. Everything else is altered. For example, book is "gook", ball is "doll", and bye-bye is "die die." With the sweetest voice you've ever heard, he tells people, "die die." Nice. But it's a Nathanism that I'm sure I'll miss someday.


If this is your first time back in a few days, you'll be surprised to see that this is my fourth post in five days. I'm on a roll! Here are some more photos:

The "milk buzz" (mohawk included)Nathan "helping" decorate cupcakes for "Soon-to-be-Aunt" Jen's birthday

Consuming the fruits of one's labors (after blowing out all of Jen's candles)Micah with Great Uncle Bill

Easter boysHappy Easter!Mommy and her boys

I hope you had a blessed Resurrection Sunday!

ER

There should be some sort of "frequent flyer" awards for hospital visits (though Valerie and Judd wouldn't know what to do with all their awards!).

Mark and I went to Good Friday service at church this afternoon. After a few errands were run, we returned home to relieve my mom from "Oma duty." She was in the process of feeding Micah and lifted him up to burp him and was wondering why her shirt was wet (thinking he had spit up). But I looked at him and realized the problem: HIS BUTTON WAS OFF! The entire contents of his stomach had spilled out and there was his Mic-Key button laying on his tummy and an open hole in his belly. Yikes!

The frantic search for the answer to, "Where do we go?" began next. Micah's pediatrician said that normally she would send us to the ER, but because Micah was so little and his button was still pretty new, we should call the surgeons in Milwaukee to see if we needed to bring him down there. The office was closed (Good Friday?), and the voicemail gave another number to call to have a surgeon paged. The answering service told me she would page a surgeon. A half hour later, still no call. So we called the pediatrician back and she suggested we just go to the ER here.

We were asked by the triage nurse whether we had an extra button stored there in the ER for such an event. Um, no, were we supposed to? "Did you bring an extra button with you?" Um, no, are we supposed to have one? She took the button that had come out up to a surgeon to check the balloon for leaks. They determined that it was still good so it could be put back in. Yuck. Back we go to an ER room.

The doctor tried to get it back in and was not able to do so. He called a surgeon down to put it in. He also struggled. So he went upstairs to get some instruments to basically open the hole a bit wider so that he could get the tube in. That didn't work either. Imagine the screaming level at this point. He tried one last thing (used forceps) and it worked. If that hadn't worked, we would have had to go to Milwaukee and knock him out again.

The surgeons in Milwaukee still haven't called us back following our page at 3:30. Nice, huh? Dr. O is going to receive a not-so-nice phone call from me that he will hopefully share with his entire staff. I'm sure it was a resident who was supposed to answer the page. But still... We would have been at the ER almost an hour sooner (we waited at home for the surgeons to call us before we went to the ER) and that might have made it easier to get the button back in. And furthermore, was it surgery's reponsibility to have told us ahead of time what to do if his button came out? And maybe they should have given us an extra button?

Micah finally ate at 7:00pm. The last time he had anything that STAYED in his stomach was at 11:30 this morning. But he's resting comfortably right now. He didn't sleep at all while we were out. I don't imagine he'll wake up anytime soon. It's been a long afternoon/evening. I'm off to feed him now. I'm not going to stress him out and wake him up to see if he'll take anything orally. I'm just going to tube it. I can't wait for this drama to be done.

3/21 - World Down Syndrome Awareness Day

Today is World Down Syndrome Day (3/21 because of 3 copies of the 21st chromosome). In honor of the day, I’m going to post some links here to share more info with my friends and family who aren’t in the Down syndrome blogosphere (yes, Michelle, I think it is a word). :-) Those of you in the DS community have probably seen/read most of these.

Here’s a great article, An Ambassador Against Fear, written by an author, Beverly Beckham, in Boston.

I love this and I’m thinking of posting it as a permanent poem on the right side of my blog:

Down Syndrome Creed
My face may be different, but my feelings the same.
I laugh and I cry and take pride in my gains.
I was sent here among you to teach and to love
as God in the heavens looks down from above.
To Him I'm no different, His love knows no bounds;
It's those here among you, in cities and towns
that judge me by standards that man has imparted,
but this family I've chosen will help me get started.
For I'm one of the children, so special so few,
that came here to learn the same lessons as you:
That love is acceptance, it must come from the heart;
we all have the same purpose, though not the same start.
The Lord gave me life to live and embrace,
and I'll do it as you do, but at my own pace.
~ Unknown

The following are two speeches delivered by Patricia Bauer, a news columnist with a child who has DS.
Stand Tall
Tell Them It’s Not So Bad


See below for an update on what’s going on with us. I wrote a long post yesterday.

Sorry

Has it really been two weeks since my last post? It’s been a bit hectic around here. I’ll do my best to make this easy to read.

Nashville ambassador to Jennie – My dear friend, Mary, came to visit and it was a huge ministry to my heart. She thought she was coming here to “work,” but the biggest blessing was simply her presence. Nathan cried when she left. He wanted to go with her to visit “Gam and Daydee” (that would be Graham and Brady to the rest of us).

Adopting our family – One of the most amazing things that has gone on for the past few months is that Mary coordinated a “shower” for us where we were adopted for various people for a week and they showered us with cards, encouragement, gifts for Nathan, phone calls, meals, gifts for Micah, gifts for us, etc. It’s been incredible. Thank you to those of you who have joined in. I’m WAY behind on thank-you notes. I’ll get there eventually, but please know how much we appreciate the love that has been poured out. And the meals people have brought over have been a HUGE help. It’s now going to be a bit more challenging (see Diet section below).

Feeding Micah – Aside from congestive heart failure, the worst thing going on with Micah these days is that his tummy seems to be consistently crummy. He no longer will come close to taking a full feed orally (it’s been 2 weeks since that last happened). I think it’s because his tummy feels awful when food gets in there. He screams so we vent his tube and he kicks out a ton of air/gas bubbles. Then a couple of days ago he spit up for the first time ever. And last night he was quite “urpee” and nothing calmed down his tummy except sitting upright, so I snuggled him most of the night (barring a break to calm Nathan down because he woke up crying too). It was a long night. He’s on day 6 of Prilosec (after a week of Zantac did not help).

Diet – Micah has been receiving fortified breastmilk since the about the middle of February, to get his calorie count higher without having to increase his fluid intake too much. It was one thing to go from 20 calorie breastmilk to 22 calorie fortified mix. But a week ago his cardiologist wanted to go from 24 cal to 27 cal. I don’t think he’s tolerating the 24, so I cheated and gave him just breastmilk for a few days to see if it changed things but it hasn’t. He’s still screaming. And Micah rarely wakes up hungry anymore. Since medicating hasn’t helped, it’s time to try changing the diet, both his and mine. So now we’re going dairy-free. I’m not sure that will change things, because he was getting straight breastmilk throughout his NICU stay and he didn’t have these problems then. His pediatrician said that many babies with g-tubes are “urpee.” Great. Maybe someone could have warned us about that. So, now we are going to cut dairy from my diet and fortify the breastmilk with soy formula. We won’t be pulling anymore milk from the freezer (I have TONS frozen from while Micah was in the NICU and on lower volume than he’s on now). I have cut back to pumping 3 times a day and I’m about 2-3oz/day short of what he needs to consume. So I’ll have to figure out whether I want to try to increase my supply or just increase the amount of formula he takes. The feeding part of this is quite time consuming. We spend up to 30 minutes letting Micah try to take food orally. Then we “tube” the rest. But in the process of tubing a feed, he exerts a lot of energy screaming and pushing his stomach contents out through the tube. Just when you think you’re able to add more milk to the syringe, he screams again and kicks it back up. Then you have to wait for him to calm down and gravity to push it back into his stomach. Many feeding sessions take an hour. Combine that with pumping, and I really feel like I spend the majority of my day feeding Micah. It’s quite draining.

Cardiologist – After raising Micah’s medication doses every week, this week we were told that he didn’t need to go back to the cardiologist for 2 weeks and his meds don’t get changed. I guess that’s a good thing. His respiratory rate continues to be high and I hate seeing him breathe so hard. I think we’re still looking at May for heart surgery, but he definitely needs to grow more. He made it up to 8lbs 11oz yesterday but was only 8lbs 9oz today (yes, it makes a difference whether he is weighed before a major diaper change).

Therapists – We’ve had our first visit with our Birth to Three service coordinator. In a nutshell, Birth to Three is a national program that is run by counties (so each county provides different levels of service). They coordinate physical, occupational, and speech therapy for Micah and they come to the house. Our service coordinator and a speech therapist were here yesterday for a speech assessment and saw one of Micah’s feedings (which included one of his better sessions with a bottle lately, as well as the standard screaming session). For those of you reading who are not familiar with all this therapy stuff, you might wonder why a newborn sees a speech therapist. Well, a baby’s ability to suck and swallow effectively can play a large role in his ability to speak later due to muscle development. So we really do care about how Micah is eating from a bottle. The speech therapist was impressed that we go through the effort that we do for Micah to eat orally and then tube feed him, rather than just feeding him through the tube. Apparently many parents don’t make the effort. A PT will be here tomorrow for his initial assessment. I don’t think the PT will be quite as impressed, since Micah seems to have very low muscle tone in his neck. Then sometime soon all 3 will come here and together we will develop a plan for Micah. I’ve heard through the grapevine that our county is not the best for Birth to Three. We’ll see. If we don’t like their plan, we can go with private providers.

Weather – Please, Lord, bring the spring here. We finally hit 40 degrees this week. I need to see flowers and grass. The snow is finally melting. But I don’t think the big parking lot piles will disappear until July at the rate we’re going. Once it’s warm enough to go to the park, then I’m thinking Nathan won’t be quite so, well, two. He’s more stir crazy than I am.

My mom – is my hero. I survived a few days without her here, but I didn’t have therapists visiting and Micah didn’t have as many doctor’s appointments as he did during the past week (but we have NONE scheduled next week). She has selflessly served us well.

St. Simons – Mark and Nathan are going to the beach in early April to visit Mark’s parents, who wisely vacate the state of WI this time of year. We have been looking forward to this vacation for a year since we weren’t able to go last year. Micah can’t travel, so I’m staying home with him. It will be Nathan’s first experience walking on the beach. I hate that I’m going to miss it. Mark proposed to me on that beach on St. Simons Island. I know he’s sad that I can’t go, but he needs a vacation. So do I, which is why…

Nashville – I’m going to make the trip to my 10-year reunion. I hate the thought of going to Nashville without Mark. But I’m looking forward to seeing friends. And it will be great to get on a plane without diapers. My mom is going to come back to help Mark since I’ll be gone for 4 days.

Now that you’ve made it through the lengthy update, here are some updated photos:
Okay, I'm ready to go home now! Family photo after Micah arrived home for the first time.
Micah's first visitors. Thanks, Charlotte and Ron, for taking such great care of Nathan.
First time in the bouncy seat. He doesn't like it as much as Nathan did.
Isn't this Bumbo seat for me? Thanks, Jim and Salina, for the Bumbo. Micah will get a lot of use out of it, I'm sure.
Micah with Mary

Mary with the boys

Check out Micah's right ear. He tends to turn his head to his right and his ear always ends up folded over.

Mary brought Micah (and Nathan) some Vandy sandals. It will be a couple years before Micah can wear his! :-)

Had to add this adorable pic of Nathan in his chair with "Thomas juice."

Nathan loving on his brother

Micah with his buddy, Brandon, who lives about 45min from us and was born in Milwaukee with duodenal atresia and Down syndrome just 5 weeks after Micah. It's so fun that God introduced our families to walk this journey together.

Alone with the boys

It's my first day alone with the boys (my mom left yesterday afternoon for a week) and all is well, except for my bloodshot eyes. Both boys are napping with full tummies and clean bodies. I'm trying to tell myself that's all that really matters as I look at my pigsty of a house.

After I posted last Saturday, the home health nurse came by for her first visit. It lasted a long time (3 hours) because she had to get all of Micah's medical history. She measured his respiratory rate twice and it was in the 80's (should be 40's or 50's). He was also using extra muscles to breathe. She put in some calls to Micah's cardiologist and pediatrician. After she talked with them, she called me and told me to take him to the ER. Great. 24 hours at home, then back to the hospital. After 4 hours in the ER, which included a nasty blood draw and an IV inserted (it's times like those that I miss the NICU), we were told he would be staying the night. I was so sad when I carried him into a room on the pediatric floor. The crib was 3 times larger than his NICU crib and I could barely stand to lay him down in it. Fortunately, Micah's cardiologist was on call so she came to see him around 10pm and increased his medications. Micah was discharged around noon on Sunday.

Hopefully the drama is over. Micah had his 2 month "well visit" with his pediatrician yesterday. It was her first time meeting Micah. I'm very sad that she is going on maternity leave in April for 12 weeks. The appt went well. Her concern is the same as everyone else's: weight gain. She was glad to hear that home health was coming by our house to weigh Micah at least once a week. She'd rather he not spend time in the waiting room at the office if not absolutely necessary. Micah had an appt with his cardiologist yesterday. She increased his meds again and wants to touch base on Tuesday to decide whether she needs to see him again on Wednesday. Regarding his heart surgery, she thinks 3-4 months (he's already 2 months old), but she wants him to be at least 10 pounds, if not 12. I'm guessing his surgery will be in May. Oh, and he finally hit 8 pounds yesterday!

We're very concerned about our little guy. It's stressful to think about him exerting so much effort just to breathe. We've had a pretty stressful few months since receiving all of Micah's diagnoses before he was born. We were looking forward to vacation with Mark's parents in April, but we can't go because Micah can't fly (or be far away from his doctors). We desperately need a vacation, but that will have to wait. We just want Micah to be well.

This shot cracks me up. This is what I found in Micah's crib when we arrived the morning of his g-tube surgery. His overnight nurse had given him a bath and he nuzzled himself into his blankets and all I could see was his fuzzy hair.

[It's taken me all day to write this post.]

First night

First night at home, and can you believe that Micah slept through the night? No, you shouldn't believe it, because it's far from the truth.

We arrived home around 4:00 yesterday afternoon, just in time to feed Micah. He took the whole bottle orally, and proceeded to do the same at 7:00. Did we just need to go home? Did we really not need the g-tube? That question was answered later, as he was screaming louder than I've ever heard and was inconsolable for his 10:00 feeding, as well as his 1:00am feeding (I'm thinking he's constipated, because he hasn't had a messy diaper for 24 hours, and he usually has 4-5 per day). We opted to let him sleep through his 4:00am feeding because he had surely burned too much energy with the screaming sessions. He woke up at 5:30am (so, he slept from 2am-5:30am... not bad). I woke him up to feed him at 8:00am in a sorry attempt to get him back "on schedule." After changing his diaper and his clothes and trying to wake him up, I ended up giving him the whole bottle through his g-tube because he just wanted to keep sleeping. And he's still asleep (at 10:15am), though in the swing.

There's some major organization to do. We need to set up some "feeding stations" for Micah. He doesn't have a pump with his tube, which makes him more portable, but I need to hang some droppers in various locations so that I can feed him without a huge ordeal.

I think Nathan is happy to have him here. He even brought Micah his pacifier this morning.