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.