Crazy life

Yes, we're all home. Yes, everyone is surviving, though I don't think it would be possible without my mom here. I'm not quite capable of going one-on-three yet. Micah isn't making it any easier. He's fussing a lot overnight and has gone through some puking sessions the past couple of days (causing me to reduce the amount of food he's getting and that appears to be helping).

Matthew is doing great. He threw up for the first time this morning while I was at Bible study. But it appears to have been an isolated incident. He eats like a little piggy. And Micah pants like a puppy when he gets excited. And Nathan has always climbed like a monkey. So we have Piggy, Puppy, and Monkey.

I'll try to write more of an update later. But here are some long overdue photos.

Micah with his occupational therapist

Nathan making Valentine's with Oma

Nathan making cookies

Matthew's car seat study in the NICU on 2/13. Thanks for the cute Valentine's outfit, Mary. I would never have thought we'd use it two years in a row!!!

Matthew's last hour in the NICU

Can we go home now?

Happy Valentine's Day!

Enamored by the television

Welcome home, Matthew

Nathan feeding baby Matthew

Little piggy trying to hold his own bottle

All three boys (yes, Nathan was giving Matthew an un-prompted kiss)

Home tomorrow!

Matthew is coming home on Saturday. But there's a catch... he has to be attached to a monitor for over two weeks. Huge bummer! Matthew had another apnea session at 1:30am today. Today is Friday the 13th, after all. He had gone 72 hours without one. Ugh. But we're very excited to be bringing him home tomorrow. Our Valentine's Day treat!

Matthew is scheduled to be discharged on Sunday. The little stinker had an "episode" (stopped breathing briefly) on Tuesday at 2:00am. If it had been before midnight, it would have counted as a Monday episode and he could have gone home Saturday. Ugh. But he's doing great... eating like a little piggy (3-3.5 ounces per feeding). Can't wait to bring him home so that his brothers can do more than look at him through a window. But maybe having a solid surface between him and his brothers is not such a bad thing...

Micah is getting an x-ray today to check his adenoids. If it shows what his ENT thinks it will show, then he's going to get his adenoids removed along with tubes in his ears. The poor kid gets so stuffed up overnight that he's consistently waking around 3:00-3:30. "We" spray his nose with saline (okay, so lately that's been Mark's role). Then he wakes up again between 5:00-6:00am coughing and throwing up mucus (usually all over Mark, who I think has finally figured out that it's just better to not get dressed for work until Micah has his morning puking session).

I'm awaiting a call from cardiology to see if Micah can have this surgery done locally or whether it will require another visit to the OR at Children's. Oh, and for some reason Micah has lost about a 1/2 pound over the past 3 weeks. Hmm.

Plan for discharge

For Matthew to be discharged from the NICU, he has to go five days without an apnea or bradycardia (stop breathing or major slowdown in heart rate). He went 24 hours this weekend, but then had one yesterday. So the countdown started today and he could be discharged on Friday. We've been given an option of taking him home sooner than that on a monitor. I've heard that can be very stressful with the monitor going off all the time (usually false alarms). After discussing the options with each other and nurses, we've decided to ride it out until Friday and bring him home without the monitor. But... if he has another episode before then, we will consider bringing him home with a monitor because we don't want this time to extend any longer than Friday.

But barring these small episodes, Matthew is doing very well. His bilirubin level is in the normal range so he is free from the lights. He's eating well so his IV line was taken out yesterday. The only attachments he has are for his heart rate and respiratory rate. So he's in a little bassinet that can be wheeled around. I was able to spend a few hours with him in a "family room" today. He was incredibly sleepy today, probably because the little piggie took between 2.5-3 ounces PER FEEDING overnight last night. And he was likely exerting more energy keeping himself warm today because he was out of his isolette. I'm trying to think positive and not believe that he has his nights and days mixed up...

We brought the boys over to "meet" Matthew last night. The boys are too young to be allowed into the NICU during viral season, so the only option is to bring Matthew into a family room with a window so the boys can look in to see him.

a kiss from Nathan

One of the funniest things about this week has been the reaction of some of the nurses who see me (or Mark) in the NICU and they do a double-take. They certainly weren't expecting to see us back at all, let alone so soon! Matthew's nurse for the past few days has been Ann. She was also one of Micah's nurses one year ago. She enjoyed seeing Micah. He was quite the ham too.

Matthew likes his arms to be free from blankets

Oma with Matthew

Oma with Micah

Grammie feeding Matthew

Home

I was released from the hospital yesterday. Being home is bitter sweet. I'm glad to be back with Mark, Nathan, and Micah. But I hate having to come home without a baby again.

Matthew is doing very well. He's under the bili light due to jaundice, and he'll likely stay under the light today. But he's eating like a champ! He is up to 2oz per feeding, so his PICC line should come out today. The hurdle that he has to clear before being released is that due to the respiratory distress he was in when he was born, he has to go five days without an apnea (when he briefly stops breathing). Yesterday was day one, so we're looking at Wednesday at best. I will have a lot of work to do to get him to nurse after he gets home, but expecting him to take all of his required calories by nursing before being discharged would mean that he would be in the hospital for a long time. We're not willing to make that sacrifice. So here we go again with the pumping. Hopefully he'll pick it up within a month.

Sweet baby face

Under the lights

Time with Daddy

Update on Micah: He has another ear infection. So, it's time for us to get down to Milwaukee to see an ENT about options. The antibiotics took care of his last ear infection, but he had another one just four days after finishing the last dose. So in our opinion, he's destined for repeated ear infections unless something is done about the root cause, which appears to be adenoids, tonsils, etc. This poor kid continues to go through coughing, throwing up, etc., because of congestion.

Quick update

Thanks for the well-wishes, everyone. I'll be checking out of the hospital tomorrow. Unfortunately, Matthew will not be joining me. It appears he might be here another week. The threshold for eating in order to be discharged from the NICU is higher than it is for leaving the regular nursery. He is off oxygen, so now it's just a matter of getting him to take all the calories the doctors want him to take. What a wonderful experience to re-live... not.

Newborn Matthew with Daddy in the OR Welcome to the NICU

This was Nathan as a newborn. Any resemblance to Matthew? I see a bit in the eyes, but not in the mouth. Matthew

Matthew with Daddy

First bottle (in his isolette) from Daddy

a visit from Pop and Grammie

cutie pie!

Some recent Micah photos

the nutty professor in his new specs!

What a silly face!

Smiley boy!He loves his bunny. Thanks, Auntie Kara!

Baby is Here!!!

Here's the great news that Mark and Jennie asked me to post:

Matthew Taylor arrived safely via c-section this morning at 7:50 CST.  He weighed in at 8 lb., 2.6 oz., 20" long, with a 14/5" head circumference.  He is currently in the NICU on oxygen because his lungs were not quite fully developed at 36 weeks, but Jennie tells me he's doing fine and they have already reduced the amount of oxygen that they are giving to him.  Jennie is doing well, too, and resting.

Congratulations to Mark, Jennie, Nathan, and Micah!

Matthew Taylor is born!

Matthew chillin' under the heat lamp

Matthew and Mommy

We are blessed to welcome Matthew Taylor into our family. Matthew was born this morning at 7:50 am. He weighed in at 8 lbs 2.6 oz (a big boy at only 36 weeks of pregnancy). He measured 20 inches long.

Despite being a healthy weight, Matthew is acting like a bit like a preemie. Shortly after birth, Matthew was working harder than he ought to breathe. As such, he was transferred to the NICU where he is on a low dose of forced air through a nasal cannula. We hope and pray that Matthew will be able to get off the cannula and leave the NICU soon. Other than the need for forced air, Matthew is a beautiful healthy little boy.

Jennie is doing great and getting some much needed rest (kinda).

Photos

Two posts in one day... amazing! I thought it was time to post some photos, since I haven't done much of that since before Thanksgiving.

I realize it's probably time for a real haircut, but I just can't bring myself to do it. I mean, he doesn't even have a tooth yet. But this photo makes him look big...


For some reason, Micah doesn't seem to like Mark trying to feed him some juice on a flat spoon (which is all he's getting by mouth, and only a little bit before he coughs). I think Micah gets intimidated because Mark hasn't tried this at Micah's eye level. First he gives him the lip, then the scream!

But only seconds later, he's smiling again.
Daddy and his boys for the nightly reading session.

Micah health update

We took a trip to the pediatrician yesterday because Micah was coughing more and it sounded sort of wheezy. As usual, by the time we got there he sounded just fine. But just to make sure, they did an RSV test since there are lots of cases going around our area and she was worried about baby's arrival next week. Fortunately, he does not have RSV. She also ordered a chest x-ray to make sure that there's no fluid in his lungs. He had that this morning and all looks fine. As you can see by the photo, it's a horrible contraption and trust me, he let us know that he was not fond of it.

So, we continue with the Nasonex and hope that his congestion goes away one of these days.

ENT visit

No quick fix offered, but we're going to try Nasonex for a month and see what happens. The good news is that his right ear didn't appear to be infected anymore so at least that's taken care of (though we have to finish this round of antibiotics). He couldn't see into his left ear very well, but that wasn't the one infected last week anyway. This doc commented on how small his little nasal passages were and that his tonsils were inflamed. He didn't bother scoping to check his adenoids because it wouldn't change his course of action, which is to try the Nasonex. If this doesn't help his congestion after a month (A MONTH???), then we'll have to see an ENT in Milwaukee to discuss surgery options. If things are still bad in another week or two, though, he might also add another steroid treatment to help with the inflamation. Another consideration is sleep apnea so he wants me to watch him sleeping (LOL... maybe the week after next when I'm up feeding his baby brother in his room).

I just want Micah to feel better. He had multiple bouts of gagging and coughing today. But even with all of that, he had a great 25 minutes with his PT today. He actually sat for a few mintues without using his hands. Missy was encouraging him to reach for toys and he did it and didn't tip over. But after 25 minutes he complained very loudly. "Age appropriate behavior." It's actually a good thing for him to protest. :-)

The frames for his eyeglasses arrived in his size today at the optician so I was able to see what they looked like on his little face. So cute! The lenses will arrive in a week. I'll post pictures when I can. I'll be in the hospital when his new glasses arrive.

New J-tubes (yes, plural)

In my previous post I mentioned Micah's congestion. Well, we are now on his third antibiotic for an ear infection (and possible sinus infection, though I'm not convinced of that). He's been throwing up every day. At first it was just in the mornings after it seemed he was trying to cough up the mucus junk that was draining overnight. Now he's doing it during other times of the day too. And by the way, this is likely the cause of him needing TWO new J-tubes in the past week because all the coughing/throwing up has dislodged the tube.

We had some major tube issues at the beginning of January. So combine those issues with the latest, and Micah has been under radiation six times this month. A J-tube is much more complicated than a G-tube. If he "just" had a G-tube and it came out, we would be able to replace it ourselves. But the J-tube has to be threaded through his stomach, pylorus, and duodenum, before being positioned a few inches into the jejunum. This process requires fluoroscopy so that the radiologist can thread a wire to the right position before placing the tube there. I've made jokes about Micah beginning to glow sometime from all the radiation, but it's really not that funny to me anymore. The amount of radiation he is receiving is of major concern to us.

And... it's 1.5 hours each way to Children's Hospital to get his tube replaced each time this happens. We can't get it done locally because Micah has a custom J-tube. He can't get a MIC-Key button until he's about 20 pounds. That would be a more "standard" tube and we could keep one with us to take to our local hospital and have it replaced there rather than driving to Milwaukee.

But those are just details. Really, we want our baby to feel better. He's miserable and sleep-deprived. He wakes up every 2 hours or so overnight because of his congestion and/or discomfort. And he has his coughing/vomiting sessions during the day and he's not napping longer than 30-45 minutes twice a day.

He sees an ENT doctor tomorrow who will likely scope him through his nose to check his adenoids, etc. Please pray that he will find a cause for Micah's congestion and offer a simple solution that will eliminate Micah's vomiting and discomfort. Please pray that we would all find a way to sleep as we're very tired.

Update on littlest baby: I had my last OB appointment this morning and the baby is doing great. After reading the ultrasound report, my OB said, "I bet you're glad you're delivering this one via c-section!" He is a good-sized boy already (estimated at 6lb6oz). But... his head and stomach measure in the 98th percentile. Just 8 more days...

Checkup

Micah had his one-year well visit today and he weighed in at 18lbs 5oz. Wow! That's great for him. He's tracking right on the 50% percentile for weight on the Down syndrome growth chart (that's basically where he's been since his heart surgery, barring the recovery period following his nasty GI bug back in early October). He just made it on the weight chart for a "typical" kid at one year (2nd percentile). He's not on the height chart for "typical", but at 27" inches, he's almost 25th percentile on the Down syndrome height chart. He's the opposite of our skinny minnie Nathan (who's 25th percentile on weight and 50% percentile on height). But he does have a big head! He's almost 90th percentile on the Down syndrome chart and he's 23rd percentile on the "typical" chart.

After one week on an antibiotic, it appears Micah still has an ear infection in one ear so we're changing antibiotics. He has been congested for almost two months now. The antibiotic probably won't help the congestion. After another week, if he still isn't sleeping well, I'm probably going to ask for a referral to an ENT to figure out what's going on inside this kid's nose. We've had the humidifier running every night in his room and spraying saline in his nose every time he wakes up (which is between 3-5 times every night). It's getting rather old and tiring. And he's not exactly happy having a stuffy nose all the time.

We have a referral to a private occupational therapist now, since Micah's OT through county services has been deployed to Iraq. The county is looking to hire someone to temporarily replace Becky, but until then we'll go with an OT over at the hospital. It's important to me that we make sure Micah is continuing to use both of his hands equally given the short fingers on his left hand.

Glasses for Micah

We saw a "new" pediatric ophthalmologist today in Madison (and it took a long time to get there with the crummy roads... many thanks to my mother-in-law for driving us there). Micah's far-sightedness seems to be a bit worse than the last time he was seen. This doc thinks there's a possibility that by putting Micah in glasses to correct the vision issue, that might address his strabismus (cross-eye) and eliminate the need for surgery. We're all for that!

So... anyone out there reading this who has experience with a one-year-old in glasses, please share your thoughts on what kind works well. There seems to be an option that wraps all the way around. Not very attractive, but the idea is to keep the glasses on his face and survive being tossed on the ground a lot, I guess.

On a separate note, I spent 8 hours in Labor and Delivery on Monday. My OB sent me up there after less than 30 minutes on a monitor. Baby's heart rate dropped significantly during a contraction and she wanted to make sure it didn't continue to happen. It only happened once more, but I did have an increase in contractions. So I ended up getting a steroid shot for baby's lung development (and the second shot yesterday). I'm also taking procardia to hopefully reduce the contractions. I'm 33 weeks along, and we REALLY want to make it to Feb 3rd for my scheduled c-section. I'll be 36 weeks then. Yes, even that is early. That's due to the complications I had with Micah's birth (I had a major uterine window and almost ruptured, so the docs don't want me to go into labor). Anyway, please pray that this baby would continue to bake healthily for almost 3 more weeks. Thanks!

Look, ma!

All of a sudden last night, Micah seemed to "get it." He figured out that he could put his hands on his knees and prop with them to sit (he can't put them on the ground... his arms are so short he ends up at a 45-degree angle). He wasn't doing his typical smiling last night. You could tell he was concentrating hard. I'm so proud of him!

Sorry the video is so dark. My laptop is in the repair yard (aka my brother's house) and we don't have video editing software on the spare computer.

Happy birthday, sweet Micah

The day has come... Micah turned one year old today. It's a bittersweet day. It's a blessing that he's even alive given everything that has gone on with him this year, especially that he almost didn't come out of the OR following his open-heart surgery because they had a hard time getting him off the bypass machine (he went back on bypass twice). But it's also a sad day for me because it's a major life marker, so what he is not doing becomes very evident (i.e. not eating anything by mouth and not sitting independently).

I'll post more photos later. We're having some computer issues and I don't want to be online very long.

Mark's accident

Nathan: "Take that thing off of you."
Mark: "Why?"
Nathan: "Cuz I don't like it."

Maybe you're wondering about what Nathan is speaking. That would be Mark's sling that he's wearing due to a skiing accident the weekend before Christmas. Yes, I received a call from Mark at the Breckenridge Medical Center mere hours after he started skiing. I didn't believe him at first. It was lunchtime and I thought he was just taking a break. I'm pretty sure one of the last things I said before he left for vacation was, "Just don't get hurt. That's the last thing we need right now."

He dislocated his shoulder and fractured his humerus after running into a snowboarder (who is fine, by the way). He saw his orthopedic surgeon last week who wanted to see him again today. Today he was concerned about something about a tendon and ordered an MRI. Great. What are the chances he can get in for that tomorrow before the new calendar year? Not so great. His appt with the doc wasn't until 5:00, so he can't talk to the scheduler until tomorrow morning, the last day of the calendar year. Why does that matter? Because we've met our family out-of-pocket maximum for our insurance this calendar year. So anything else that we get hit with in 2008 is covered at 100%. So if Mark's MRI is on Friday, we'll pay a ton of money for it. What a great way to start a new year!

Please pray that he's able to get in for an MRI tomorrow. Highly unlikely, I know, but it would really help.

The Christmas letter

The elves came through and the Christmas letter is finally written. See the link on the upper left side of the blog to read it.

I hope you all had a wonderful Christmas. Micah had a great time playing with the wrapping paper. Nathan is still having a fun time "showing Micah all of his toys" (aka, playing with Micah's toys).

We're home

Micah had his first outpatient surgical experience today. It was quite a nice change. He definitely knew where he was after we put the hospital "gown" on him and he was no longer his easy-going self: he quickly became quite irritable. And he didn't come out of anesthesia well either (it was tough to settle him down). He finally settled after we put him in his car seat and strolled him around the unit with his IV still in. Yes, the car seat. I would not have thought a car seat could be a happy place for a baby after dealing with Nathan's aversion to that location as a baby. But Micah just loves it.

One of the challenges of having a baby who is fed through a tube is that he can't communicate that he doesn't want more food until it's sort of too late. He doesn't decide how much food goes into his intestines: we decide for him. So after a few hours of food going into him after surgery, he got puky on the ride home. When I vented his stomach, there was bile there. That is the only way we know that a specific volume of food is too much for him. If he ate from a bottle like other babies, he probably wouldn't have over-eaten.

Anyway.... we're home. Please pray that Micah heals quickly (he's pretty bruised "down there"). And that he would be able to get up to volume on feeds in the next day or so.

OR visit #6

Micah is having his "little boy" surgery today for undescended testicles. "Why 3 days before Christmas?" you might ask. Well, with the next baby coming on 2/2 or 2/3, I didn't want to take the trip to Milwaukee in late January (our other option). So here we are.
Let's make this the last OR visit for a while, okay buddy?

If you're looking for our Christmas update letter, let us know when you find it. We're hoping the Christmas elves will write it for us. Seriously, though, it's in process and we'll post it soon. Meanwhile, I'll try to do some updates on our lives for the last six weeks.

One major update is that Micah is sleeping much better these days (until the past 3 days that he's been sort of congested). Thank you to everyone who has been praying for our rest. Micah started sleeping better just in time for me to be less comfortable in my 3rd trimester state... but at least he is sleeping better and he's a much happier baby because of it (not that he was ever really a grumpy baby).

Please pray for Becky, Micah's occupational therapist. She is being deployed to Baghdad (though that could easily turn into Afghanistan, from what I hear). We will miss her dearly. Pray we would have wisdom about how to handle Micah's therapy needs going forward. We could wait for the county to hire a temporary OT, or we could go with private services.

I can't post pictures from the hospital, but I'll post some new ones soon.

First Haircut

Before:

In process:

After:

I didn't do an all-over cut... I just cut enough to get it out of his eyes. It's going to reduce his comb-over too, so it will likely stick up more on the top of his head where he has opposing cowlicks. Too cute!

Today's Nathan quote:

"Daddeeeeee... you broke my circle. That was not kind. You need to say you're sorry to me."

New Nathanisms

Looking out his window when Nathan woke up Saturday morning: "Look! It's snowing! It must be Christmastime!"

Eating pizza (and salad) for dinner tonight: "Why is Daddy taking all the pieces?"

On a separate note, Micah is not sleeping well. Sometimes it's just general fussiness. Sometimes there's air/gas in his stomach that needs to be vented. But other times he's quite uncomfortable and it appears to be lower GI-related. In any case, we're all pretty exhausted around here and could use your prayers.

This is a photo of Micah the day before he went into the hospital at the end of September (this was taken a few hours after Nathan's birthday party). Micah NEVER sleeps on his tummy, but this was the only way he would sleep that day, and we had to pat his back to get him to fall asleep. He was really sick.

Quite a difference from this photo, huh? He's doing a great job sitting up in his Bumbo seat for extended periods of time.

Here's the whole family on Sunday after Micah's baby dedication at church

Lion cub

I'm a little biased, but isn't Micah the cutest, brave lion cub you've ever seen? I couldn't decide which picture to post, so you get three.

If you're wondering why there are no photos of Nathan in his costume, well, that's because he refused to wear it. He spent Friday afternoon being completely ornery. He was a grump at the neighbor's party (which was soooo fun... they even had an inflatable bouncy thing) and he wouldn't don his costume to go trick or treating. He was a true joy. I guess we all have our moments, but his are coming way too frequently these days. :-(