6 Month Checkup says he's good at "everything"

Last Friday Jonah went for his 6 month developmental assessment at Children's Hospital. They schedule based on when he should have been born, he's actually 7.5 months old now (can you believe it?!?). He had basic height/weight/head circumfrence checks by the nurse and a physical by the doctor. But, new this time, he met with Physical Therapy, Occupational Therapy, and Speech Therapy. He was assessed on the Bayley score, where they try to have him do basic skills and give points based on that, ultimately giving us an "age equivalent". It was a looong appointment at nearly 3 hours long (have you ever tried to keep a 7 month old happy/awake/not hungry for 3 hours? not easy!). But, in the end, they gave us Jonah's very first report card, pronouncing him good at "everything!!". His motor skills are at 7 months for gross muscles and 8 months for fine muscles, great since we were aiming for 6 months! His mental scale is at 7 months and his expressive (talking) score is 7 months as well.

The only place he ended up being below his adjusted age was receptive (understanding) at 5 months 10 days. I wasn't aware but many babies "recognize" several words by this point. The speech therapist tried to yell "no" at Jonah and he didn't respond. Not surprising since I don't tell him no, until he learns to crawl, what can he really do that's naughty? She called his name and he responded, but only when there wasn't other distractions like a toy. She tried "up" and "bye"...no response. So, we'll start working on that, but she said she wasn't really concerned since he did so well everywhere else, she knows he'll catch up and doesn't recommend any additional help or therapy. They told us to make an appointment for when he's one year old and just keep doing what we're doing.

Other than that, we're just enjoying life. I'm off work this week of Christmas but will be back working full time in January. My mother-in-law is super-sweet and continued to watch Jonah 2x of week all the way through last week but will be taking the rest of the winter off, its a long cold drive out here each day and the roads are not always the best.

Jonah continues to be an absolutely amazing baby. I absolutely love this age! I started saying that about three months ago, he is alert and likes to play peek-a-boo, he sits up and giggles uncontrolably when I tickle him. He sleeps through the night :) He's amazing...now if only he napped for longer than a half hour at a time....gotta run! Here's a photo I snapped the day after our six month developmental appointment, he's ready for Christmas!

Normal Life

It's so wonderful being a normal family and doing all of the normal things families do!

I go back to work this week, which I embrace for its utter normal-ness and the fact that Jonah is well enough for us to feel comfortable with him away from us, but of course have mixed emotions as any mom will. I planned to return to work on a Wednesday so that my first week back would be short. My mom and my mother-in-law will watch Jonah for the next month and he'll start at daycare in September. He'll only go twice a week and I'll stay home one day a week with my mother-in-law taking the other two days. We'll do that for a while and see how it goes, probably transitioning to full 5-day weeks at daycare sometime near the end of the year.

We also went and took Jonah's 3 month professional photographs. We just went to JCPenney's and on a weekday so there would be less kids around. So far I haven't had to worry about too much sickness but I know it will be a paranoid winter for me. They've told me its critical that Jonah not get sick in the first six months and it would be better if he didn't have any sickness that touched his lungs in the first year. It's promising to be a crazy flu season with H1N1 going around but we will try our hardest!

Here are a few photos of us enjoying the last bit of summer.

Daddy and Jonah out on the hammock on the deck.

Jonah in shorts and a T-Shirt, enjoying the last of the summer warmth.

Daddy and Jonah chilling along the edge of Lake Geneva where we went to take our first destination stroller walk.

We are so blessed!

Well, that's it. Or rather, I hope that's it. Jonah will still go in annually for surgical follow-up, get chest x-rays and make sure that diaphragm of his is behaving. We'll still need to go every few months for NICU followups for his prematurity. And we'll need to watch him carefully if he ever shows signs of malrotated bowels (vomiting bile) or difficulty breathing. We need to protect his lungs as much as possible while the left one grows and matures, shielding him from sickness during this awful flu season and taking him for RSV shots this first winter. We have increased risk for asthma and a few other long term things that we'll deal with in the future. But, by and large, we're done with the really hard part (praying its so, fingers crossed, hoping, knock on wood, anything else I can do)!

Thank you, thank you, THANK YOU to all of the people who have been praying for him! Certainly don't stop, we'll always need your prayers! Thank you to our family and friends for supporting us and loving us and thank you to our church family for helping and supporting us as well!

Thank you, thank you, THANK YOU to the wonderful nurses and doctors at Children's Hospital of Wisconsin! Thank God that we were in the right place at the right time to get the best care for Jonah!

Thank you, thank you, THANK YOU to the people on the CHERUB boards for their support. I wasn't around much as I didn't join until we were already in the hospital and I was obsessed with being with Jonah nearly every possible minute, but when I did have a question, you guys were right there. Fantastic website for information about CDH!

And last but not least, thank you, thank you, THANK YOU to Giles and Janel, another family who's son was born with CDH just two weeks after Jonah in the same hospital, who we were able to talk with and spend time together, and who showed us what unbelievable faith and peace we should have as Christians. You guys are amazing and we hope Elijiah comes home really soon!

Surgical Follow-Up

Today was Jonah's surgical follow-up. We'll have these once a year to make sure his diaphragm is intact and everything looks good. My mom went with me and I'm glad of it. My husband is still trying to build up vacation time but it was helpful to have another set of hands (and ears).

We arrived and went right to radiology to get a chest x-ray done. It was pretty awful watching them sandbag Jonah to the table, twisting his arms above his head and use masking tape to make sure he held still. He cried! I tried to soothe him from behind the table 4 foot away but the radiologist techs told me to let him scream...it made for a better picture. Cruel! But they were mercifully quick. Not looking forward to when Jonah gets older, how to you convince a 2 year old to stay there?

On to the appointment. We met with Dr. Lal as Dr. Aiken was out of the office. He looked at the x-ray and told us everything appeared good but had no answers for the questions I had. He finally just let me look at the x-ray myself (not that I knew what I was looking at) and said there really wasn't any way to predict how Jonah would do long-term but that the indications looked good. Wait and see...that's all we can do.

1st Week Home - It feels good!

I love being at home with my baby boy! We've had a very busy week, it's so much different being the only one home with him. I don't want to leave him, but I still have to do some things, not much, everything that can wait will, but some things, like bathroom breaks and pumping, have to happen sometime!

But it's wonderful! We had our first two visits from the visiting nurse and we also went to see Jonah's regular pediatrician. All agree that Jonah's doing wonderfully! The pediatrician is completely supportive of me trying Jonah on straight breastmilk (rather than fortifying it) as long as he continues to gain weight and although the visiting nurse doesn't particularly like it, I get to be in charge now :) Jonah starts off with slow but steady weight gain and quickly ramps it up to where we only have an occassional raised eye from the nurse. We combined my first visit with the pediatrician with Jonah's 2 month immunizations and well baby visit so we don't have to go back for 2 months. Other than our visiting nurse, that means no doctor's for two whole weeks!

The first two nights we're home we decide to wake up Jonah at the four hour mark in the middle of the night if he doesn't wake up at his regular 3 hour mark for feeding. Then we are told in no uncertain terms by experienced parents that we're crazy! Granted, they didn't have the situation we had, but we decide to see. Jonah sleeps 6 hours at a crack and still gains weight, yea! He doesn't surrender to sleep at night very easily, as AJ will attest, but once he's out we usually only have to get up once with him to eat.

AJ attends a close friend's wedding that he RSVP'd to long ago. I had RSVP'd no since I was supposed to have a two week old, but that's OK, it's too soon anyways. My mom comes to visit

2nd Day Home

My husband had to go off to work already today, no extra vacation time to spare since he took off when Jonah was born and again for the second surgery. Sure was glad when he came back home from work. This staying at home stuff is wonderful but intimidating too! Jonah got his first bath at home today too, fun fun! It's also our four year wedding anniversary today!

The Visiting Nurse came today for the first time too. She comes to the house and does weight checks, listens to Jonah's breathing and does an overall assessment like taking his temperature and measuring his length and head circumfrence. Her first visit was longer than most as she was taking a history and getting familiar with Jonah. She'll be coming twice a week for a while then once a week after that. To tell the truth though, I was a bit disappointed by the experience. I expected her to come with a POx (Pulse Oximeter) to check his oxygen saturations since that was my main worry while in the NICU. Instead she asked me what she should be looking for and it seemed focused mostly on his weight. He lost a little weight but seeing as scales can measure differently, I wasn't too concerned, I was glad she wasn't either. She didn't like the fact that I wanted to get off the fortified breastmilk as soon as possible. It made Jonah irritable as he didn't digest it well and I was convinced he was gaining weight fine before they put him on it but didn't want to argue in the NICU for fear of it taking longer for us to get home. Now that we were home, I wanted off the stuff, fast! I told her I'd talk to my pediatrician about it Monday but that I'd prefer to check his weight gain on that. Overall I appreciated her coming, it made me feel good that someone was looking at him regularly, but I think I could have done most of it myself if we bought a baby scale.

On another note, Jonah looks soooo tiny in his big boy crib! I thought moving from the NICU warmer to a crib was a big change but holy smokes he looks tiny in his regular crib. It feels so weird to put him in it, he only takes up 1% of the bed! I should have gotten a picture but of course, when the baby is sleeping, don't do anything to jeopordize that!

Day 53 - We're HOME!

My email to all friends and family, which I didn't send out till after we got home just so I wouldn't jinx us
~~~~~~~~~~~~~
Soooo happy to send this email, we're home!!! Jonah was given the A-OK this morning to come home. No monitors, no tubes, no wires, no oxygen, just Jonah, yea! He just had his first diaper change and bottle at home and now he's upstairs sleeping in his own crib.

Thank you to everyone for all the prayers and kind thoughts! Keep them coming as mom and dad spend their first full night with the little one tonight and mom tries to relax knowing we have no monitors around to beep at us, we might be hearing them in our sleep anyways :)

Cheryl
~~~~~~~~~~~~~
We had quite the day, my husband took off of work and checked us out of the Ronald McDonald House once we were SURE we were going home that morning. I stuck around doing the discharge stuff and filling Jonah's reflux medication prescription (which we'll give every morning) and his vitamin supplement (also every morning). We brought a huge cooler to lug all the extra breastmilk home in and packed up our stuff and made a bee-line for the exit before anyone could tell us otherwise. Just kidding of course, it actually took most of the day but we were OK with that as long as we got out of Milwaukee before rush hour traffic started. We had two cars there since my husband had been driving to work daily and I went to the hospital so we followed each other home. I'd like to say we basked in being home but with my husband only off work one day we more ran around getting everything accomplished because starting tomorrow I'm all on my own, ahhh!


Making our getaway in the parking structure at Children's Hospital.


Jonah slept the whole way home.


And we couldn't help putting him in his swing at home, he hadn't ever been in one and loved it immediately, so cozy he slept in there for most of his naps that first month home.