Fun at Grandma and Grandpa’s

This is Aaron’s last week out of town, so the boys and I headed to Walla Walla for one more visit with Grandma and Grandpa before Matthew’s surgery. Even though we were just here a couple weeks ago, my parents were surprised by how big Matthew has gotten, and how chunky and active he is. Several people have commented on his “color” lately, too. I hadn’t noticed much of a difference until I put him on this green blanket. I used to avoid green blankets and outfits, because they would make my pale, fair-skinned boy look a sickly green! But now he still looks healthy and pink, even against a green background.

Matthew has taken a real interest in “real” food. Anytime I’m eating something and holding him, he really eyes my food. He grabs some if he can, or if the food is out of reach, he grabs my hand and pulls it to his mouth, trying to taste everything. We’ve given him “tastes” of different things, and last week he lunged for my banana and started sucking on it vigorously. I let him taste Grandma’s homemade blueberry syrup last night before I put Micah to bed, and when I came out, Grandma and Grandpa had gotten out a spoon! He really didn’t eat very much of it, but he thoroughly enjoyed it and it sure made a mess!

This picture makes him look really chunky – the first one is a more accurate representation – but I love the blueberry grin! It was his first try at a spoon, and he did better than I thought he would. Down’s babies often have a “thrusting tongue” that makes it difficult to eat from a spoon, and I had seen some of that when he was tasting other foods. He was doing a good job sucking the syrup off the spoon, though!

Thanks to friends who supplied us with dermatologic “super glue,” Matthew’s adhesives are staying in place much better, and therefore the tube is staying in place, too!  Today marks one full week without having to replace the tube!  Hooray!

Micah is having a great time at Grandma and Grandpa’s house, too. He especially loves “Grandpa’s big slide!” These pictures are from a couple weeks ago, when the Daffodils were in full bloom. They are done now, but we’re enjoying tulips and all the blooms from the flowering trees. It has been a long winter, and I’m ready for Spring.

Update 4/20/08

This is Aaron writing today. I was finally able to come home for the weekend. I have been working in Cle Elum, and got sick while I was there. We have been trying hard to not expose Matthew to germs this close to the surgery, so it was 3 weeks before I could come back. It is wonderful to spend time with the family again and Matthew has changed so much! I am spending some time getting to know him again.

Matthew now weighs in at a whopping 12.1 lbs! All those nighttime tube feedings are paying off, and he now has his first fat rolls on his legs. His activity level has increased dramatically and he constantly squirms, plays, and moves. It is great to see him roll over and do so many of the things that healthy babies do. Unfortunately he also manages to pull out his NG tube quite often.  Amy had to replace it last Sunday morning, and again Thursday evening. It is very unpleasant to put it back in again so Amy has been super vigilante about keeping it taped down and his hands away from his face. It will be really nice someday when he can be free of it.

I have one more week out of town, then I will be home for a week to prepare and get ready for the big surgery in Spokane. We went down pretty unprepared last time. (It was a trial run!) Now we have a better idea what we will need and where to go and we hope that will make it an easier transition.

Thanks for all the love and prayers! We will keep updating you as things happen.

7 Month Birthday

Matthew is 7 months old today, which is a remarkable milestone for our baby who was given 3-6 months to live. He has been doing exceptionally well, and seems to be fully recovered from his bowel surgery.  His incision looks fantastic – it doesn’t come through very well on the video because it is really just a fine pink line now.  He has more energy, is more active, and more alert and interactive than ever before! (It makes us wonder if the hernia had been there, causing problems, for a long time.)

He had been very close to rolling over for several weeks, but finally did this past week. And, once he got started, there was no stopping him! He is in constant motion while awake now – rolling, moving, reaching, kicking, and grabbing. He has become quite a bit more demanding, too. He lets us know when a toy got away from him, or he’s ready to be rolled back over, or he doesn’t want to be set down. (He generally wants to be held and snuggled at all times, but there are times I have to set him down for a minute!) These are all wonderful milestones for him, and it is so good to see him doing all these “normal” baby things.

Aaron was still too ill to be around Matthew this weekend, although he is starting to feel better. He hasn’t seen Matthew roll over, so we had to make a video for him. 🙂 We really miss him – we’re not used to going 3 weeks without Daddy!

Keeping Matthew’s NG tube in has been a challenge, and replacing it once he pulls it out is an even bigger challenge. We are thankful it will be a temporary part of our lives.

We are so proud of you, Matthew!

Cardiology appointment, surgery details, and specific prayer requests

Matthew’s cardiology appointment went very well yesterday. We were able to see Dr. Anderson, who was very good to us when Matthew was a newborn in the NICU. Matthew was up to about 11 1/2 pounds! I guess if you need to gain weight, continually pumping in a high-calorie formula all night long is the way to go!

All of the cardiologists and surgeons met on Tuesday to discuss Matthew’s case, and Dr. Anderson said everyone was in agreement that Matthew is a great candidate for surgery. He also said, “We are all astounded by Matthew, and he is a real inspiration to us. He has given us all a lot of hope.”

Dr. Anderson also emphasized the magnitude of the surgery. Even though they expect that Matthew will do well, there are still a lot of risks. There is about a 20% chance that the heart’s electrical conduction system will be damaged during surgery. If it is, he will need a pacemaker, which means another surgery within a week after the first. The pacemaker would be a permanent, life-long part of Matthew’s life, and is not without complication either. We’re asking for specific prayers that the surgery goes as well as it can, and that the heart’s conduction system can be preserved.

During the surgery, his heart will be stopped and he will be placed on a heart/lung bypass machine. The hope is that the surgery can be accomplished with Matthew spending less than 2 hours on the bypass machine, because babies who have more than 2 hours of bypass have more complications.

The surgery will be 3-fold:

• patch the hole between the top chambers of the heart
• patch the hole between the bottom chambers of the heart
• “split” the common valve in the middle of the heart into two, functional valves

Patching the holes is fairly routine, but separating the valve can be tricky and complicated. One of the most common complications of the surgery is that the valves leak or become stiff, requiring a valve replacement years down the road.

Dr. Anderson said the surgery usually takes about 6 hours, from the time we kiss him and send him off, to when we can see him in recovery. And, we can expect about a 2-week hospital stay if all goes well.

For those of you interested in more of the medical information, click on the “Complete AV Canal” link. This is a web site that explains the defect and the repair very well (Matthew has the “complete” version of the defect), and has pictures that help explain it all.  (Click on the little “Graphic Summary” icon for pictures.)  The difference between the descriptions and Matthew’s heart, is that Matthew’s heart is “unbalanced.” That means the left side of his heart is still just a little small (“on the lower-limits of normal”), and his right side is quite enlarged.

Surprisingly, Dr. Anderson said this is not as concerning as it sounds. Once the defect is repaired and the blood is all flowing where it is supposed to flow, the heart generally evens-out over time.

Surgery is still scheduled for May 7th. We appreciate all of your prayers, especially for Matthew to stay healthy until the surgery, and that all of the specific aspects of the surgery go as well as they can.

Monday

The boys and I came to Walla Walla on Saturday to spend some time with my parents while Aaron is out of town.  Micah is having a lot of fun here; there is a new flower-bed in progress outside that functions as a giant sand-box!

We had to put Matthew’s NG tube back in last night.  We had a really nice break from the tube for a few days, but even though he was eating well, he wasn’t quite getting the amount of calories they want him to have.  We would prefer that he not need the tube, of course, but Matthew really doesn’t mind it very much once it is in place.  And, we all get more sleep now, to!  We have a pump that continually feeds him through the night, so we don’t have to wake him up for feedings.  He eats quite well during the day, but would fall behind at night because he was too sleepy to eat.  (We’re the only parents we know who woke up a peacefully sleeping 6-month old in order to feed him!)  We joke that Micah should have had a tube at 6-months when he was still waking up every couple hours to eat!  🙂  We are thankful that this is just a short-term need, and once he has recovered from surgery he will have the strength and energy to eat and grow all on his own.

Aaron and I are gradually recovering from the emotional whirlwind of the past 11 months, and adjusting to the fact that instead of losing our baby, we will be raising Matthew.  Before we learned the miraculous news about his heart, it was too difficult to read or learn much about Down’s Syndrome, but now we are feeling ready to learn what we need to learn in order to be the best parents we can be for Matthew.  I recently read an article by another mom of a child with Down’s Syndrome.  It is a very good article, and she expresses many of the same feelings we’ve had with Matthew.  The whole article is worth reading (click on the “First Things Article” link to the right), but her concluding sentence especially struck me:

“all of life is fragile and uncertain, with potential for heartbreak and potential for great joy.”

That is so very true.

Thank you all again for your prayers.

4 Generations of Skiers

Mid-March, we took Micah out on the slopes for the first time. He absolutely loved it! His balance and coordination were impressive for a not-quite 2 1/2 year-old. We would point him down the hill, and he would just GO! We would slow him down with the harness, and he would say, “Don’t pull me! Go Faster!” We all had a lot of fun.

Micah’s Great-Grandpa and Great-Grandma were also on the slopes that day (as they are most days during the winter!) so we were able to take a 4-generation picture on skiis. Here it is:

Micah (age 2) with his Daddy, Grandparents Tim and Barb, and Great-Grandpa George (age 80)

Tube-Free Day

We had a great day today. Matthew managed to pull his tube out this morning; but he took all of his formula, and even his medicine, from the bottle, so I haven’t had to put it back in yet. It was really nice to give him a break from the tube and all the tape on his face. We took the opportunity to give him a bath, take some pictures, and just enjoy some tube-free time.

My cousins came over this morning, and were very helpful – they stayed with the boys for awhile so I could do some errands, then they helped clean and organize the house!  Thanks!

Aaron is still very sick (fevers, body aches, cough) and will not be coming home this weekend.  Hopefully he will be able to recover over the weekend, and we pray that the rest of us are safe from this bug!

5 Kgs!

Matthew weighed in at 5 Kgs exactly (about 11 lbs) today – which is an all-time high for him. It’s great news – he’s gained back everything he lost with this recent illness and surgery, and his body has been able to process all the extra calories we’ve been giving him. He’s packing on weight, just like he is supposed to.

I’m surviving the first week without Aaron. The kids are both doing well, and I’m finally getting to some projects around the house that have been neglected. I started cleaning out the car this evening – it was pretty bad after all our travels – and was starting to stink after the formula incident . . .

On our way back to Yakima, we stopped to feed and change Matthew. He had a massive diarrhea diaper (which is a challenge to change in the car!), then took a few ounces from the bottle, but we had to tube-feed the rest. The feeding tube that was placed in Spokane was slightly different from the ones we had at home – it did not “lock” onto the feeding syringes. So, (we found out) if a person forgets to hold the two pieces together, they can slip apart! A spray of formula shot up, hitting the top of the car and covering us with a fine mist of Enfamil 24cal! It wasn’t a large amount, but most of it landed on Matthew’s sweet little face. He didn’t cry, but looked up at us with his big, blue expressive eyes – half frightened, half confused, and absolutely covered in formula.  Aaron and I looked at each other, and for a split second, didn’t know whether to laugh or to cry. But, then we both burst out laughing and cleaned everyone up the best we could. It was the first time we’d really laughed together in a long time. When Matthew pulled out his tube a couple days later, we replaced it with the locking kind!

Aaron has been working in CleElum all this week, and has come down with a nasty cough today.  So, it’s likely that he won’t be coming back for the weekend – we can’t expose Matthew to anyone who’s sick.  It’s difficult when his Daddy is around sick people all day long!  But, other than that, Aaron says work is going well, and he’s enjoying uninterrupted nights of sleep!