A Little Something Extra

Thursday, July 31, 2008

Ruby & Braden

We had visitors today! The last time we saw the Zoromski family was while Micah was in the NICU in Milwaukee (back in January). Ruby is a friend who also has designer genes. She has a brother, Braden, who is a year older than Nathan. The kids all had fun. But Nathan was none too pleased when Ruby destroyed one of his "towers" of mega bloks. He will have quite a rude awakening when Micah gets mobile. Look out!

I just realized I never posted photos of our last visit (a couple of weeks ago) with Micah's buddy, Brandon. It had been a while since we had seen them. We met Brandon in Milwaukee the last week of February when Micah went back to that NICU to get his g-tube.

Monday, July 28, 2008

Happy Birthday, Mark!

Mark officially feels older this year. It's hilarious being married to a marketing guy. He's bummed because he has to move up a segment on the age categories. You know when you fill out a survey that asks for your age? He's now in the 35-44 category. My response? "Get over it, pup!" Seriously, though, I feel so blessed to be able to celebrate his birthdays with him for the rest of his life.
(if the "cake" looks a bit odd, that's because it's a cobbler, not a cake)

Friday, July 25, 2008

Nathan to Milwaukee

My friend, Betsy, watched Micah today while I took Nathan to Milwaukee for laser treatment for a birthmark (every other month for 7 treatments, we think... this was his 4th). Betsy's son said something like, "Can we have a baby who looks just like Micah? He's so cute." Isn't that the sweetest thing? I so appreciate this family taking care of Micah today. He enjoyed the attention and laughed at sweet James and Audrey.

Nathan has figured out what's going on with these trips to Milwaukee. He was fairly naive for a while, but on the way this morning he said, "I don't need to go doctor. I fine. I just fine." He was fine in the waiting room (toys, you know), but as soon as the nurse called his name he dropped to the floor on his tummy and cried. He recovered quickly, though, and was a really good boy. He did a bit better this time after he woke up with an IV line in his hand (compared to last time when he kept yanking on it). But he cried out A LOT on the way home. It's tough because he's completely exhausted because I have to wake him up so early in the morning to drive down there. But he's napping now, so all is peaceful here.

Micah's trip to Milwaukee yesterday was good. We need to get his bloodwork done to check his thyroid level again but I didn't feel like doing that yesterday. The nurse practitioner asked me a bunch of questions about Micah's development. She said that he's at 6 months for social development. He's way behind on gross motor skills (yep, knew that one). She kept saying how wonderful it is that he communicates back and forth with eye contact. Yes, that's our social little boy.

We also met with a speech pathologist. He had some new ideas for exercises. He also explained a bit about why Micah has an oral aversion. He thinks that because the tongue is the first part of the digestive system, he doesn't like anything touching his tongue because it initiates the process that is painful for him. He was pleased that Micah tolerates me messing with his cheeks (what, I HAVE to pinch his cheeks? oh, that's too much work for a mommy! :-) ) and that I can put my finger in his mouth as long as I don't touch his tongue (if I do, he gags, and we don't want that to happen often because then he might not let anything into his mouth).

Micah's last weight check put him at 14lbs 4 oz. He's gaining more than an ounce a day. He's chunking out big time. Oh, and the pediatrician doesn't seem concerned about the hyperinflated lung, so we're just supposed to watch for symptoms like wheezing or difficulty breathing. Whew. One less thing to worry about.

Happy weekend!

Wednesday, July 23, 2008

Perfect hearing and hyper-inflated lungs

Micah passed his 6-month hearing tests today, praise God! His ear canals are quite small, making it difficult for doctors to see his inner ears. But all looks good at this point. We'll just need to be on top of any sort of illnesses because it's quite easy for little ones with tiny canals to get infections.

After the ENT appt, I decided to stop by the cardiology clinic to ask about a cough that Micah has had lately. I figured it would just be a nurse listening to make sure there's no fluid building up (he's only been off his diuretics for 2 weeks). The cardiologist was in and she listened as well. She opted to put Micah back on one of his diuretics for a bit and she ordered a chest x-ray. Now that Micah is 6 months old, he has to be upright for the chest x-rays. Next time he gets one I'll bring my camera. It's like a baby torture chamber. He had to sit sort of on a bicycle seat with his hands in the air and two semi-circular cones around his body and a strap behind his head. Needless to say, Micah didn't enjoy that very much.

Anyway... the cardiologist just called me (yes, at 9pm) because she just looked at the x-rays. It appears Micah's lungs are hyper-inflated, primarily the right one, which is probably why his liver is low (that was one of the reasons that she ordered the chest x-ray in the first place). She said his heart looks good, so something else must be causing the lung issue. He might be having some sort of aspiration (likely when he's refluxing) or he could have asthma, though she said he didn't sound asthmatic.

So tomorrow I get to call the pediatrician and ask what she'd like to do about the lung thing.

Tomorrow (Thursday) Micah sees the endocrinologist in Milwaukee for follow-up for his hypothyroidism. Since we're going anyway, we have an opportunity to see a speech therapist who is part of the feeding team at Children's. It makes sense to take advantage of this opportunity since we can't get Micah into the feeding clinic until November. Then on Friday, I take Nathan to Milwaukee for another laser treatment for his monster birthmark. That's never fun. He doesn't recover well from the anesthesia. Please pray he doesn't get sick on the way home.

Pray for Ethan

Please pray for baby Ethan. His daddy works with Mark. Ethan was born with a serious heart defect called Tetralogy of Fallot and pulmonary atresia. Amazingly, Ethan was big enough and strong enough to have a one-repair situation. Many babies with this defect require multiple surgeries. And he was eating like a champ before his heart surgery so he flew through recovery and was released from the hospital one week after his surgery. But he's back in the hospital with a staph infection in his bloodstream. He's going into surgery today to see if the infection is around his heart. They expect he'll be in the hospital for 4-6 weeks. Please keep Ethan and his family in your prayers.

Sunday, July 13, 2008

At long last… Micah’s health update

6month check-up – Micah weighs 13lbs 3oz and is 24” long. This puts him on the “normal” weight chart for the first time in the 1st percentile and bumps him up to the 26th percentile on the Down syndrome chart. He’s a couple of check-ups behind on his shots, but we’ll get him caught up by one year.

Heart stuff – Micah saw his cardiologist last week. She doesn’t want to see him for FOUR MONTHS. Wow. And he’s now off all of his heart meds except one. His blood pressure is good, his oxygenation is 100%, and his respiratory rate is good. He’s still retracting with his breathing, but that should tone down a bit over time as his body realizes it doesn’t have to use so many muscles to breathe. At his next appt he will have an echocardiogram to assess how well his new valves are working (in a nutshell, his surgery was to patch two holes and create two valves from one big hole).

Eating – Micah doesn’t eat anything by mouth. Yes, that’s really hard. It’s hard enough for a woman who wants to nurse her baby to find out that she can’t (for whatever reason). But tack onto that the inability to feed your baby with a bottle, and it just, well, stinks.

Gastrointestinal – This appears to be Micah’s biggest hurdle at this point. We’ve been told to “reset” our expectations regarding Micah’s feeding tube (per his GI doctor: “I’m fairly confident that Micah will be able to get rid of his feeding tube someday… I just don’t know whether than will be when he’s 1 ½, 2, 3 or 4 years old.”). Ouch. That really hurt. And that’s basically why I haven’t updated the blog on Micah’s health lately. We have to draw gas out of his stomach (through the g-port) because it gets distended and causes him to urp. He still has reflux, but he’s on a high dose of Prilosec to limit the level of acid so that it doesn’t harm his esophagus.

Duodenum – Still not sure if it’s working. His j-tube feeds him into his jejunum, which means that the majority of his digestion is done after the duodenum. The GI doctor told us to start trying an ounce a day into his g-tube to see if he’s able to cope with food going through there, then we up to two ounces, and then three ounces. If he tolerates that, then we might be able to start solids soon. There might be an issue with a high volume going through his g-tube because of the j-tube sort of blocking the path downward. I guess we’ll find out. But he’s been able to digest all of his saliva and stomach juices, so he thinks this should work.

Feeding tube – I have a love/hate relationship with this thing. Logically, it needs to be skewed more toward “love,” because without it, I’m not sure whether our little guy would be growing or even living. But he has to be connected to a feeding pump for about 21 hours/day and he has a multi-port tube sticking out from his clothing. A friend of mine’s daughter asked about it at church a few weeks ago, and I told her that, “He needs it because he doesn’t know how to eat.” This little girl’s sweet brother, Will, chimed in and said, “Yet.” I almost cried.

Prayer requests:
* That Micah would tolerate the feedings through his g-tube so that he can start solids
* That Micah would not develop an oral aversion to solids like he has with liquids
* That Micah would get more comfortable and able to deal with the pressure in his belly
* That Micah’s neck strength would increase and he would use his arms more

* But most importantly, that we would truly rest on God’s strength: “I can do all things through Christ who strengthens me.”

Saturday, July 12, 2008

Holding up his head

Micah's neck is getting much stronger. He pulls off your shoulder more often these days and he's looking around. Here's his best tummy time:

His PT (physical therapist), Missy, who comes to the house once a week and is in the photo above, said that Micah is probably ready for a Bumbo seat. So we brought the Bumbo seat up from the basement and gave it a try. He leaned more than he should have on the front, but at least he held up his head.
Way to go, Micah!

The following photos are evidence contradicting the "they're always such happy children" comments. Micah wasn't too excited about his bouncy seat for some reason.

No, I don't make a habit of letting him get too worked up. He was just in one of those moods one afternoon where nothing was making him happy. Believe it or not, it happens to Micah. I'm not complaining, though, because he is a generally content baby.

Thursday, July 10, 2008

Mango allergy?

This is how Nathan looked before his first dose of Benadryl after a trip to the doctor. The prevailing theory is a mango allergy. Bummer. Dried mangos have been called "candy" by Nathan. Here's hoping the hives go away soon!

Wednesday, July 9, 2008

Need photos of your children?

Remember when I posted the cute photos of the boys? Here's another one that I didn't post that day because we used it for Micah's birth announcement:

Our photographer, Heidi, is doing a "Mini Session" at Pierce Park in Appleton this Saturday, 7/12, from 9:30-4:30. For $50, you get 30 minutes of time with Heidi, a CD of edited images from the session, and a custom mini accordian album. Heidi's candids are fantastic. She will basically follow your kids around the park for 30 minutes to catch their true personalities. For additional photos, see her website: http://hjselchphotography.com/. If you're interested, email Heidi at hjselchphoto at sbcglobal dot net, or call her at 920-279-2376 to set up a 30-minute time slot.

(I got sick of the old template as a background so I'm temporarily switching to this one with the dots until I can find a different template that I like better)

Saturday, July 5, 2008

Happy 6 month birthday, Micah!

There's so much to write as it relates to Micah's health issues, but I'll save that for a time when it's not so late at night. But I couldn't let the day go by without sharing some photos of Micah. He's had a lot of "life experiences" since then.

Storytime before bed
Should I cut his hair?
Snuggled in the sling
Alfalfa "talk to the hand"
I just thought this look was priceless!
On Father's Day

Are you serious? You're letting crazy Nathan hold me?

Speaking of Nathan... Mommy's meddling got Nathan his first rejection on Thursday at an outdoor lunch concert. He asked Audrey if she wanted to dance and she said, "No."

Nathan actually went over to Micah (who was playing peacefully) and dropped on top of him and said, "I wuv you, Nicah."

Nathan and "big Nathan" (next door neighbor) on July 4th at Communityfest

Nathan thoroughly enjoyed having a dog in our house for 24 hours (Uncle Jim and Aunt Jen brought Boo with them)

Nathan's first train ride, and it was on Thomas. The photo makes it look like we were steaming along at a good clip, but it was more like 5mph.

Look for a real update soon, maybe tomorrow?