Four Years Post-Op

Wow, my little boy is four years old!  Unbelievable!  Just a quick post to say we went in for his annual chest x-ray and surgical post-op appointment and they say all looks good.  His lungs are growing as expected and they're happy with his scar and chest.  They will keep an eye on his spine to watch for signs of scoliosis but right now it looks completely normal and we have NO more checkups for two years!  Wow!  He's 43lbs which makes him big for his age but he's also quite tall for his age so we're looking at potentially well over 6 foot tall when he grows up (not that I always believe their growth will continue on the same curve forever).

A little bit of good CDH news, one of the studies we participate in had a really impressive year in terms of finding out a lot about what causes CDH and I thought I'd share.  http://www.cdhgenetics.com/results.cfm  They do a good job about writing in readable language.  It talks about the gene they found that caused CDH in several cases and are examining the correlation it has with severity.  As many are aware, CDH is especially difficult to figure out as most times no other family members have it, sometimes comes with other birth defects and is sometimes isolated and while it's fatal in 50% of cases in other cases like Jonah it's the only birth defect, is surgically corrected and does not cause any future problems.  They are also researching how NICU practices improve outcomes after the child is born.  In case you're finding this post quite a while after I've written it, it's under the Winter 2012 heading.

Here's a few photos of Jonah over the past year, he's loving being a big brother and it's amazing how much he's grown up over the last year.  He starts 4 year old kindergarten half day in September but right now is enjoying spending 2 days a week with his grandparents for the summer, they get into lots of mischief!

Jonah is a big brother!

Jonah is a big brother!!!  To beautiful, happy and HEALTHY baby Julia!  Who was born at the local hospital, came home 31 hours later, and is doing fantastic!  Jonah is sooo proud of being a big brother, he is enamored with her and loves to "help" with holding and feeding. 

And here's a professional photo taken by the talented Heather Beach Photography, the same lady who took Jonah's one year photos as well as our family photos last year. 

Three Year Appointment

Another whole year has passed and things continue to get better and better! No more developmental appointments since he rocked those for final time last summer, however, we still had our annual chest x-ray and surgical follow-up. X-ray went relatively smoothly. I couldn't stay in the room as I'm currently expecting (more on that later :) but Jonah was calm when I came back in and he was excited about getting stickers, so he was a bit dazed but relatively OK with the process. Surgeon said not only do the x-rays look great, but based on how things are going, no need to come in next year if we're feeling comfortable. We can still make the appointment and come if anything changes but otherwise he'll see us in two years!!! Yea!!!

As for Jonah's life, he started at an actual daycare center last spring (before this he had been in small in-homes) and I won't pretend we didn't have more illnesses. Seems like he caught every cold in the place and pink eye as well. However, no hospitalizations and no "scary" sicknesses, just the normal kid stuff with the exception of needing an inhaler a few times. We spoke with his pediatrician about it as he was on/off it for about 4 months this winter, seemingly when he would get sick it would just be hard to shake without a bit of help. We agreed to wean him off it in the spring and he hasn't needed it since April so about 5 months and counting now. We'll see how this upcoming winter goes, he hasn't been diagnosed with asthma but it's a possibility.

OK, on to the other exciting news, Jonah is going to be a big brother! I am due in two weeks and was being followed by high-risk perinatology with ultrasounds every month. Every one showed no evidence of anything amiss and as of 32 weeks, I've been given the all-clear to follow a normal pregnancy schedule from here forward.  I took progesterone shots weekly to help prevent preterm labor (Jonah was born at 34 weeks) however, my perinatologist thinks there's a good chance Jonah's prematurity was due to his birth defect and since I'm 38 weeks now, I would tend to agree.  I'm loving this "normal" pregnancy stuff, no complaints from me!

A few photos from this summer, Jonah is just an absolute joy and getting sooo big!!!

Two Year Appointment

In some ways I can't believe it's been two years and yet at the same time it feels literally a lifetime ago we were in the NICU. We're blessed beyond reason for how well Jonah has done and I feel guilty to admit that most days I don't even think about CDH, or his rough start, or anything other than enjoying him growing up faster and faster each day. He now loves to play on the playset out in the backyard, run after our friend's dog, and talk up a storm. We're even taking a few tentative steps towards planning for a sibling for Jonah.

But, since this is a CDH blog, I'd better get on with the update for that. For the first time I booked both our standing appointments for the same day. Remember Jonah goes to the surgical clinic once a year and the developmental clinic twice a year. This June, I set both up for a Friday and hoped he would stay in a good mood. Developmental first just in case things turned south.

The developmental appointment went well last time and I anticipated the same thing time around. I had even asked if we could be done after this appointment though I suspected we'd be asked to come again at 2.5 years and 3 years of age. But seeing as he was scoring at and above his age equivalent in everything and seeming to learn faster each day, it seemed a bit unnecessary. And, as it turns out, this was his graduation day, no more developmental appointments! They said he was as advanced as a three year old on most things (wow!), particularly comprehensive language. All the therapists were honestly just thrilled and so impressed! They even told me to have a discussion with his daycare center next week about how they'd need to keep him challenged so he doesn't get bored because he's so smart. Yeah, sure that would be popular and forever mark me as "that mom".

Then it was on to the surgical appointment. He got chest x-rays first thing and did fantastic! He sat in this little chair up high and got all strapped in. He was so calm and good they didn't need to do the head and arm straps which helped a lot. Then by the time he got upset it was nearly over. The surgeon looked at the x-rays and said everything looked good, took a quick peak at the scars and said they were A-OK and listened to his chest. It was over very fast and AJ even joked that it was pretty quick considering how big the bill would be. But of course we're delighted that things are going so well. They want to see us back again next year and after that we'll consider stretching out the surgical appointments a bit. There's no hard and fast rules, someone with CDH can reherniate at any time, but we'll stay optimistic but also remain cautious. Being more used to these appointments now, we know better than to ask if this or that will happen in the future, there's just no guarantees. We'll continue to monitor things and take it one day at a time. But, all in all, I just can't think of a single thing I'd want different. And what a wonderful blessing that is!

I may not update this blog anymore, I find I've run out of a whole lot of CDH things to specifically write about. If there's every anything more, I'll pop in...or maybe just to brag on my boy a bit more...but otherwise, enjoy a few more photos.

Those darn grandparents like to feed him way too much chocolate!

Mom prefers the natural sugar! Strawberry picking fun!

1.5 Year Checkup

Merry Belated Christmas!!! We had a fantastic Christmas here with lots of visiting with family and friends, a beautiful Christmas service and lots of very noisy toys...thanks grandparents! :)

Wow, amazing to think that another 6 months have passed. Jonah just completed his 1.5 year developmental follow up. We again had occupational, physical, and speech therapists there, along with a nurse and a neonatologist. All said Jonah is doing fantastic! We're definitely going back at the 2 year mark but then may be done or may be asked to go back at 2.5 and 3 years. I'm hoping we're done, I'm confident Jonah is hitting all his milestones somewhere between his adjusted and actual age and in some cases is far ahead of of his goal. Here are the results. Keep in mind we're shooting for between 18 months adjusted or almost 20 months actual.

Cognitive (play skills) = 22 months
Fine motor Skills = 25 months
Gross Motor Skills = 20 months
Receptive Language (understanding) = 21 months
Expressive Language (talking) = 19 months

It's funny how much things change in 6 months. After the 2.5 hour appointment we went out to the Cheesecake Factory for lunch just the three of us then visited dad's work on the way back to our house. We wouldn't have dreamed of doing this the first time we went at 6 months or probably not even at a year due to napping schedules and germs. Things are so much fun!

I forgot last time to write about his surgical follow-up, which we'll do annually for a while. He had a chest x-ray and the surgeon said things look good. The fact that he made it through is first winter without any breathing treatments or rehospitalization means we're probably in a good spot as far as his lung function and we just have to watch to make sure he doesn't reherniat. We scheduled the next one for the same day as the developmental assessment, so that will be a long day but then we're potentially done for a whole year, yea!

As for other doctors, Jonah's regular pediatrician is delighted with how he's doing and we'll just be seeing him for regular well visits. He actually said at his 18 month checkup that you'd just never know he was a preemie. He weighs 28lbs now and weighs more than 70% of babies his age and is taller than 90% of them! Jonah's pulmonologist says no need for any more appointments unless I want one and he recommended no RSV shots this winter. Wow, who would have thought we'd be so blessed!

Just a few more photos, he's just a wonderfully happy and healthy little boy.

First time in the snow, have to love winter!

Last year might have been his "first" Christmas, but this one was a ton more fun with Jonah opening gifts and actually getting excited about the toys!

One year developmental checkup

We had Jonah's 1 year developmental appointment yesterday at Children's Hospital. He was due June 2nd so they schedule it close to that rather than his actual birthday in April. They again measured him on the Bayley scoring, asking him to perform certain tasks (in a fun way) and seeing what he could do. He enjoyed it overall as the physical and occupational therapists bring toys with them :) Speech just mostly observes and asks us questions. It took only 2 hours this time (as opposed to 3 hours for the first apt).

His measurements are:
Gross Motor: 12 months
Fine Motor: 13 months
Receptive Language (understanding): 14 months

Expressive Language (talking): 13 months

Cognitive (Play skills): 15 months

Excellent considering we were shooting for 12 months! He's actually just under 14 months based on his real birthday so we're happy he's at that level for some of the skills. We'll go back in December for another round of testing and then I think only one more when he's 2 years old.

While we were there we also got everyone's blood drawn for two research studies on CDH. One is called DHREAMS http://www.cdhgenetics.com/ and the other is called CDH Study at Children's Hospital in Boston. Both will be studying our DNA to help them identify the cause of CDH and potentially find a better way of treating it in the future. A bit of a pain and it took over an hour to get it sorted out but in the end we did walk out with the vials of blood that I'll send FedEx to the researchers.

Jonah is so much fun! He started walking about a month ago and now toddles around everywhere. We've moved our childproofing up to the three foot tall level (and learned to be on the lookout at anyone else's house :) He babbles all the time and loves to play catch and be tossed around by dad. Mom is good for cuddles when he's not feeling well, which he's not right now. He has a cold (or something) and coughs constantly. We've been assured its nothing to worry about, it just isn't any fun for him, especially since he's also cutting three teeth, two of which are molars.

On another note, my husband and I are celebrating our 5 year anniversary today. Looking forward to another 75 years or so! :)

Here are just a few recent photos, we sure are loving the summer months! Jonah isn't too sure about the grass some days but he loves being outside! Other days, he eats everything in site, grass, dandalions, flowers, bark and more :)

Our water table is another big hit, and we can hide in the shade during the hot and sunny part of the day.

And yea, no more baby food for Jonah! He loves eating big boy food, from spaghetti to just about anything else (except vegetables, which he's boycotting right now). We're not quite done with bottles yet but he does like a sippy cup of water.

Birthday Boy!

Jonah is one year old! Who would have thought a year ago that we would be able to celebrate without any tubes, wires, or worries! (well, aside from the fact that grandpa is going to feed him chocolate non-stop). He's into everything now, crawling lightning fast and cruising around furniture or using a push toy to get around the house walking too.

We went in to visit a pulmonologist at Children's back in February since our new insurance company denied RSV shots after the first of the year. We got all our documentation laid out and the insurance company decided he was elligible, score one for our team! I highly recommend appealing a decision if you don't believe it's the right call, we've only had to appeal two things but both we eventually won with persistance and documentation. Of course, we missed one month of the shots while I was arguing with the insurance company, but luckily Jonah didn't get sick. We've been really lucky this winter, two colds and an ear infection and that was it. Praise God!

Jonah had his one year checkup and since RSV season seems to be over he had a completely normal little boy schedule of shots. Four shots along with all the regular measurements, etc. He's gaining nicely on the growth chart, up to 42% for weight and 73% for length, and that's based on his actual age, his adjusted age will look even better!

We'll go in for another developmental assessment at Children's in June to measure his one year skills by occupational, physical and speech therapy. We'll also get another surgical follow up to see how his diaphram and lungs look. Wish us luck! Until then, I'll share some of Jonah's one year photos taken by the very talented Heather Beach Photography.

Can you see his abdominal scar? Yeah, barely!