In Neenah

We're home! Well, at least three of us are actually home and Micah is in the same city. We've had a few people ask about meals and we very much appreciate the offers. We need to see how things go for the next few days as we're all adjusting to being here. My mom will be here for another week, so I think we're fairly well covered for a week or so.

Micah is basically sleeping through most of his feedings. He just doesn't have the endurance to take the full amount yet and he hasn't gotten the technique down either. We could be in the NICU for quite a while, but at least we're up here now. But for those of you who have asked... his digestive tract is working just fine. :-)

Neenah, here we come!

Everyone seems to be okay with Micah being moved up to Neenah, so we're now just waiting for the transport team to tell us when they can fit him into the schedule. They should be received a pre-authorization letter from our insurance company later this afternoon/evening and that's the last piece of the puzzle. Well, sort of... the weather could play a role in the "when?" question. But at least we know that sometime this week (hopefully tomorrow), Micah will be transported to Neenah. We don't know how many more weeks he'll be in the hospital, but it will be easier to deal with while being able to sleep in my own house.

I'll miss Micah's caregivers here at CHW. The nurses are wonderful, as are the speech therapists, lactation consultants, physical therapists, etc. But it's great that the NICU in Neenah is in the same group as Milwaukee, so we have great referrals.

Once we get a date/time from transport, I'll let you know!

3 weeks old

Micah was born three weeks ago yesterday. We've reached the low end of the estimated range of time we would spend in the hospital (initially, it was estimated at 3-4 weeks, then we were told 3-6 weeks). It appears we have at least two more weeks to go because he isn’t picking up the suck/swallow/breathe thing very well. The neonatologist spoke with me today about one concern for him potentially being moved back up to Neenah. The issue is that it’s possible that Micah might end up needing a G-tube for feeding even after he goes home, and inserting that is a surgical procedure. So he wants to check with the surgeons to see if they do that procedure up in Neenah. If not, then we won’t be able to move him. Micah now weighs 6lbs, 5oz. It's easy to gain weight when they're shoving food into your stomach through your nose and shoving nutrition to your body through a PIC line.

Nathan is doing better up here now that Mark has arrived for the weekend. But we have a problem. Nathan will no longer go anywhere near the playroom. He’s terrified of the puppets (with reason… they’re rather scary-looking). It’s a huge bummer because that’s the best place in the House.

One week ago, before a disappointing loss (note Micah’s green and gold hat!)

Oma and Nathan get to hold Micah

Note the front of his gown… God’s Gift!

What a cute little dinosaur outfit! And you can also see the bottom of Freddie the Firefly on his left side. Micah enjoys looking at him and he’s even made a move for him with his left hand. Next time we have an opportunity to transport something to him from our house, we’ll bring the crib mobile. I think he’d really enjoy that. And his nurse said something about bringing in a swing or a bouncy seat for him. Fun!

Return of the NG

Looks like I posted too soon this morning. After I posted, I came to Micah's room and found that they had put an NG feeding tube in already. He still has residual bile in his stomach that hasn't gotten down through his intestines. Not sure what surgery is going to say about that yet. But I was very sad to see another tube in his nose this morning. And I had hoped to request that if they did put in another tube, could they please put it through the other nostril to balance out his lopsided nose (the drainage NG tube he had in for 2 weeks really yanked his nose to the side). But no, I didn't have time to request that because they put it in last night, of course in the same nostril.

Messy diaper achieved!

Sorry I didn't get an opportunity to post yesterday. But I just thought I'd let you know that Micah had a poopy diaper on Wednesday night. Yay!

Yesterday we attempted to feed him 10 cc's (vs. 5 on Wed.). It took a long time to get that much into him every 3 hours. He hasn't gotten the suck/swallow/breathe thing yet. The speech pathologist warned me yesterday that they will basically increase the volume in his feeds at least every 24 hours (if not 12) and that Micah will likely not be able to keep up with that. She wanted to prepare me for the inevitable NG tube. This could take a while. The patient care team is checking with our insurance to see if we could get him transfered up to Neenah. It's not likely that it will be covered on insurance, but it's worth a shot.

A physical therapist came by on Wednesday afternoon. She gave me some tips on how best to hold Micah and position him for playtime and sleeping, given his low muscle tone. This visit happened after I gave him a bath. I don't know why, but the reality of Micah's diagnosis of Down syndrome was so very apparent to me at that time and I just started to cry (and cried most of the night). I've hesitated to even mention that on here because I'm aware of how many more people are reading my blog now. I want to be okay with his diagnosis and I don't want to be sad about this part of who he is. And I want to appear all together and not struggling and content with what God has given us. But this is the only place I'm documenting our journey, so I guess you all are going to have to deal with the fact that I'm human and not some spiritual giant (well, those of you who know me best know that isn't true anyway...).

Nathan has been here for a week now (barring Sunday night when we all went home). He's testing every limit with me, specifically, but also with my mom now, so she has to be exhausted (she went home for the weekend and Mark arrived last night). We'll decide at the end of the weekend whether it makes sense for Nathan to go home or continue to stay here. I missed him so much when he wasn't here, but now that he is here, I sometimes want to throw him out a window (like when he's pitching a major fit and screaming at the top of his lungs). [please don't accuse me of child abuse... I wouldn't actually throw him out a window...]

So, the new prayer requests are: 1) Micah would learn that this eating thing is not so bad, 2) Nathan would settle into our current living situation, and 3) BCBS would have mercy on us and pay for the ambulance transport home so that we can all be together in the same city.

Surprise!

When I entered Micah's pod this evening, his nurse said, "Micah has a surprise for you!"
Me: "He had a poopy diaper???!!!"
Nurse Mary: "No..."
Me: "Wow! They took out his NG tube!"
Mary: "No, "they" didn't..."

Yes, it's true. Micah pulled out his NG tube that was draining the contents of his stomach. Nurse Mary called the surgeons and they decided not to put it back in tonight and see what happens overnight. The stuff that's in there will go one of two places. We'll find out in the morning which is the case. Here's hoping it goes out the bottom end.

Even without the NG tube incident, there was talk about us trying to start feeding him tomorrow. I met the speech therapist yesterday and she indicated that Micah does a lot of things right with the pacifier and sucking on a finger so she isn't too worried about him learning how to eat. His tongue curls correctly, he roots occasionally (she thinks that will increase when he actually feels hungry when they taper back his IV food), and his bottom lip has good tone. His upper lip needs a bit of work so she showed me an exercise to work on with him. Please pray that we get to try it out for real tomorrow.

Photos finally!

It's about time to update with some photos.

Uncle Andy stopped by to visit (on his way to the Packer game last weekend... you know, the game they actually WON).
Tiny little hand
Upgraded to a crib!
I haven’t mentioned this before, but note Micah’s left hand. All four fingers cut off below the first joint (his thumb is fine). This apparently has no correlation to any of his other diagnoses. The assumption is that it was caused by “amniotic banding” and occurred in utero during the first trimester. I was so sad about it but now I’ve grown to love that hand because it's Micah's. And when I was telling Shannon about it the day after Micah was born, she just smiled at me and said something to the effect of, “Of all your children to have something like this, it’s better that it’s him, because he won’t care.” She also helped to relieve my concerns over it being just one more thing that children will mock him about. She told me that the other children don’t mock her Jonny for anything. Shannon, thank you for sharing with me. It’s definitely helped.Here’s the entourage coming down the hallway.
Pop and Grammie get to hold Micah for the first time.

Micah with Mommy and Nathan

Mommy’s first attempt at a bath for Micah… he didn’t care much for the sponging off part, but he really enjoyed the hair wash.
After the bath, we had some kangaroo time. For about five minutes he just looked up at me in wide-eyed wonder. Then he proceeded to snooze (including snoring) for over an hour. Something about his face in this photo reminded me of his cousin, Mary. Could it be the cheeks? This photo is of Mary when she was almost a year old (she’s five today! Happy Birthday, Mary!).

Consistency...

… is not what we’re looking for here. But that’s what we’re getting. Micah still has very little in the way of rumblings in his bowels. The amount of drainage from his tummy remains consistent. So there’s still nothing moving through his bowels. It’s been 10 days since his surgery and I had hoped we would be able to start feeding him this weekend. No such luck. Please continue to pray that his bowels would start working.

But the good news… because he’s been able to maintain his own body temperature, Micah has been given a crib rather than a warmer.

And the best news of the week is that Nathan, Grammie, Pop, and Oma were able to visit yesterday. It did my heart good to see them. Nathan was fairly well-behaved while they were here. I joked with Bill before they left, “How many senior citizens does it take to corral a two-year-old?” It was very hard for Nathan to keep his mask on, so we all wore them. Nathan gave Micah a sweet little lovey. Micah gave Nathan an over-sized stuffed Elmo.

Today I was able to give Micah a sponge bath. He was none too pleased about being stripped down and he let us know. But he didn’t mind getting his hair washed by the end of it. Then I was able to snuggle him close before we put him back in his crib. It’s called “Kangaroo Care” and it’s used frequently with preemies in the NICU for skin-to-skin contact. Micah found this fascinating to start with. Then he fell into such a deep sleep for over an hour that he began to snore!

I'm having issues posting photos from the hospital, apparently due to some sort of bandwidth restriction. I'm not sure how to get around this problem, but I'll try to do it from Mark's computer with his wireless card when he's here this weekend.

Karen Gaffney

Those of you in the "Down syndrome community" have likely already seen this clip, so I'm posting this link for those of you who haven't seen it. It's about a very inspirational young woman with Down syndrome. It brings tears to my eyes, but they're happy tears. Who are we to limit the possibilities of an individual with an extra 21st chromosome?
The clip is about 5 minutes long. It aired on the Today Show on Dec. 26th. Enjoy! http://www.msnbc.msn.com/id/21134540/#22397724

Just Think

I received a gift and a card from a friend yesterday. I've given the same card to someone else before, but I don't think it was quite as meaningful then as it is to me now:
Just Think
Your son is here not by chance,
but by God's choosing.
His hand formed him
and made him the person he is.
God compares him to no one else -
he is one of a kind.
Your son will lack nothing
that God's grace can't give him.
God has allowed your son to be here
at this time in history
to fulfill His special purpose
for this generation.

~ by Roy Lessin

I've read it a few times and I still cry reading it. God has Micah's life planned in advance. Somehow He will prepare us to guide Micah, but it's not up to us to determine Micah's future success. I need to be reminded of this when I'm feeling burdened.

The past few days that I've been here I haven't thought much about the fact that Micah has Down syndrome. There are other issues that are more "urgent," like getting him out of the NICU and bringing him home. And...

Nathan still has a fever. Once he gets rid of that, then he and my mom could come here 48 hours later. I miss my sweet Nathan. Mark is heading back to Neenah tomorrow to spend some time with Nathan and go back to work on Monday. Mark travels to Chicago for business on Tuesday and Wednesday.

Update on Micah:
They removed his nasal cannula and he was doing well yesterday (and enjoying life a bit more without it). He occasionally has drops in his heart rate but they don't appear to be significant. I'll post some more photos later. Thanks again for your prayers.

Bili off, bili on

Uncle Jim visiting















My first attempt at clothing (okay, so maybe I need to get some smaller clothes)





















Our peaceful, content little guy






















Micah is doing very well. He thoroughly enjoyed his day yesterday because they took him off the bili blanket and took away the bili light because his bilirubin level went below 10 yesterday morning (the attending decided to cut him some slack and try it for a day to see how he would do). Unfortunately, he didn't do incredibly well... his bili level went up to 11.9 today, so he's back on the blanket. But he slept all day yesterday because he was so comfortable being in clothes and a swaddle (and we held him most of the day).


There are some occasional rumblings in his GI system but it could be a while before things start working down there. Please continue to pray that happens quickly.

Also, please pray for our sweet Nathan. He has been sick, so we don't know if he'll be able to come down and visit this weekend. Our moms have been great about caring for him (as well as a sweet friend from church). But we miss him terribly, and he has expressed the same to his grandmothers. So we'd love to see him soon.

A good night

Micah had a good night last night. They supplemented his epidural with a bit of acetaminophen because he was showing signs of pain. It will be a few more days before they remove the epidural. He is still under the bili light and blanket under him due to jaundice. It will take a bit more time for that to be removed than normal just because of his intestines not moving yet (due to surgery), and that's the primary way the body removes biliruben. He still has the nasal oxygen running, but it's atmospheric level. They're keeping it on for another day or so just because it forces some oxygen into him.

We met with a cardiologist today and she told us that his heart defect is "balanced." So nothing should need to happen before his surgery other than medication. They're hoping he can make it to 4-6 months of age so that he'll be bigger (easier to operate on a larger heart/baby). But overall, it's very good news from a heart perspective.

His EEG came back normal (there was some concern he might be having seizures, but he isn't). Praise God!

Our next step is to wait. His small bowel has never functioned before, so until it starts working, we can't feed him anything (he is receiving nutrition through a PIC line). Then we'll be working with him to teach him how to eat. The estimate is still about 4 weeks in the NICU. Please pray that his intestines will get working quickly.

Our current plan is for Mark to remain in Milwaukee with me through Sunday and get back to work on Monday. We think it would be difficult to have Nathan stay at the Ronald McDonald House with us until I'm able to get myself up overnight without needing assistance getting out of the bed (due to the c-section, I still have a decent amount of pain and my abdominal muscles aren't strong enough to pull my own self out of bed). So we're playing it by ear for next week. I'll need my mom with me at the House regardless of what we do with Nathan. Please pray for my healing as well.

We so appreciate all of your prayers, friends. God is truly working through Micah's life!

Micah Louis

A quick thank-you to Amy and Colleen for the previous posts. It should be a bit easier for me to post when I get to Milwaukee.

Micah (“Who is like God?”) Louis (“famed warrior”) was born at 2:32pm on Saturday, Jan. 5th. He weighed 5 pounds, 6 ounces, and was 18 inches long: a big boy for 34 weeks, 5 days! He has a very sweet face and a bunch of hair (though a bit less than his monchichi brother!). God orchestrated the timing and location of his birth. It turns out it was quite fortunate that we didn’t end up in the ambulance to Milwaukee that afternoon because it would have been quite dangerous for both Micah and myself.

The surgery to repair his duodenum (first part of the small bowel) was yesterday afternoon and he passed with flying colors. The anesthesiologist told Mark to expect that he would likely return from surgery connected to the ventilator but they were able to remove the ventilator in the OR. As you can see in the pictures, he is on a bit of oxygen in the NICU, but it’s not much (I think Mark told me that it was 30% Sunday, 25% Monday, and regular air is 22%?... don't know about today yet). Mark should probably be writing the medical updates since I’m not there yet.

Speaking of which, I checked out of the hospital this morning. I had a rough night Sunday night with pain control and we decided that it would be better for me to stay another day.

Micah was not comfortable last evening, which is not surprising given everything he’s been through. The nurses said he did well overnight, though. He is also dealing with a bit of jaundice so he has a bili blanket.

His recovery involves a couple of key factors. The first is that his duodenum will contract down to size and begin to function. That could take up to a couple of weeks. After that happens, he will then need to learn how to eat. Up to that point, he is being fed through a PIC line.

Thank you so much for all your prayers. God has been in complete control of the timing and location of everything that has gone on so far, and we trust He will continue to be. Micah is truly a gift from Him and we trust He will complete a good work in him.

Mark came up to get me and we are heading back to Milwaukee this afternoon. Here are some pictures and we'll post more soon.

Answers to Prayer and more Requests...

This is another friend of Mark and Jennie... Jennie plans on posting pictures, etc. tomorrow AM after she is released from the hospital.

I just talked with Jennie and wanted to share some answers to prayer:

Baby D
-has good muscle tone according to the neonatologist in Neenah!
-needs no immediate intervention (as far as we know now) for the AV canal- it can wait until he's older.

Jennie
-is feeling MUCH better comparatively after this C-section than her first C-section- she has been up walking around numerous times today.
-has discharge orders for tomorrow AM (not doing the transfer thing to Milwaukee)
-has been encouraged already by visits from friends and family.

Mark
-went with Baby D to Milwaukee.
-able to check into the Ronald McDonald house tonight (unexpected great news).
-has friends (Kevin and Angie) who came to be with him in Milwaukee.

PRAY FOR:
1. The timing of Baby D's surgery in Milwaukee.
2. Comfort and reassurance for Mark and Jennie from God
-on Baby D's health.
-the various hurdles to overcome in the near and far future - not to be overwhelmed.
-the stress of the last 24 hours with everything that has happened.

"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God." 2 Corinthians 1:3-4

Baby is Here!

Hi again,

Jennie called, and the baby is here!  Mark dropped Nathan off at his parents' house and then took Jennie to the hospital.  The plan was to transfer Jennie to Milwaukee, but she progressed very quickly so they delivered her where she was.  Baby D. came within two hours of her arrival at the hospital.  He's beautiful!  He doesn't have a name yet, but weighed 2.445 kg, which is 5.4 lbs.  He has been transfered to Milwaukee.  That's all they know so far.  The docs are trying to find an obstetrician who is willing to transfer Jennie to Milwaukee as well.  (This sounds like it could be challenging, so please pray for her transfer.)

That's all I know so far.  Jennie says they'll have pictures up soon and that he's a beautiful baby!

EMERGENCY C-SECTION-PLEASE PRAY

Hi everyone,

This is Amy, a friend of Mark and Jennie's.  Mark just called and Jennie is going in for an emergency c-section right now.  I asked if the baby was in distress, and he said no but that Jennie was dilated and ready to go.  Immediately after that, he said he had to run but Jennie wanted me to post the news.

The baby is not quite 35 weeks along, so please pray the health of the baby and all the other concerns Jennie has posted about before.

So, please, please, pray, first of all, and spread the word to others to pray, second of all.  I'll post more the next time Mark calls.

Thank you!

Congrats, Jim & Jen

FINALLY! My brother, Jim, is engaged. And it's been well worth the wait. He's marrying a super fun, sweet woman named Jen whom he met through various church connections. Strangely, I think she used to date his former roommate. For those of you who have known Mark and I for the duration, you might recall that I once dated a roommate of Mark's and that's how Mark and I met. Odd, huh?

Anyway, we are absolutely thrilled that Jen is going to become a member of the family. And Nathan adores her too. In fact, when the phone rang the other day and I said, "It's Uncle Jim," Nathan responded with "Aunt Jen?"

Here's a fun photo of their engagement in Chicago: