Monday, October 22, 2012

Happy 6 Months

Side note: Nate and I created a group in Facebook called Team JD to keep everyone updated on JD's adventurous life. You can expect to see the invitations from us in the next few days. We will continue to update the blog but for quick hits we will update on the Facebook group. With our numerous appointments and an active yet adorable 2 year old I am having a harder time updating the blog on a regular basis. Many of you always send your love asking about JD and this will give you quicker updates. We will post the blog updates on the page as well as the day-to-day happenings of James Douglas. 

Please feel free to remove yourself from the group if it is too much or if I forgot anyone I am happy to add them to the group. Just let me know. Thank you for all your support for JD he appreciates the attention.


We have had 38 appointments and one hospital stay since I last updated the blog over a month ago. Take away weekends and that averages to about 1½ appointments per day. Please forgive my lateness for this update. 

Through all of our appointments we are thrilled with JD’s progress -- yet the conversations have gotten real. For the first 6 months we have worked on helping him grow and get stronger. Good news, both of those things have happened therefore it is time to discuss how to keep him growing and strong. Those conversations are a bit more intense as the words “surgery” and “long-term” are thrown around. Going in we were fully aware JD would need surgeries throughout his life but we have been in a utopia with only one very minor surgery for his GTube placement up until this point. Team JD is amazing and we have full confidence in our doctors, but we are ramping up our prayers.


I make leg warmers look tough

Already protecting his little brother

A few updates from the past month . . .

Big Updates: Tummy time is allowed without the collar to help strengthen his neck. Continuing to wean only 3 hours of collar-free time per day.

Surgery Update: Turns out his neck misalignment starts at C1-C2 on the cervical spine – basically right at the base of the skull. Depending on how strong we can build up the neck muscles the likelihood of fusion surgery is increasing. We will do our best to work on his neck and have the surgery conversation once Dr. A says it is time.

ABR (Hearing)
Big Updates: JD finally made it through a full ABR! We were in a very small soundproof room and the goal was to keep him asleep for an hour. Mom may or may not have caught a few zzzz’s during the test as well. Don’t judge.

Surgery Update: No surprise to us but it is confirmed JD has hearing loss. He can hear but only lower tones for now. Next steps will be tubes in his ears and we will reassess with another ABR. Until then I will keep singing “You Are My Sunshine” in a very low, loud, strange voice.

Big News: JD’s growth has slowed down. He has not gained any weight in over a month – yet he has not lost any either.

Heart: During the appointment we had many questions but one in particular about his heart. While Dr. D was listening to his heart he listened a little longer than usual which lead to a bit of a discussion. In short, his murmur (ASD - hole in his heart) sounded about the same when it should be lessen. Nothing to worry about but add another appointment to our list. Originally, we were heading back to the cardiologist 6 months after our first appointment. But given the murmur Dr. D is sending us to a new cardiologist - “one of his guys.”  More on that a bit later but I am very pleased to see a new cardiologist . . .

Blinking: About 6 weeks ago Nate and I noticed JD would rapidly blink three or four times randomly throughout the day. Being the Organization Diva that I am I started documenting these episodes down to the minute. This allowed us to the look for patterns within his episodes. By the time our appointment came around I had yet to find a pattern but we mentioned it to Dr. D. It did raise an eyebrow for Dr. D leading to another appointment with an EEG. More on that later . . .

Big Updates: JD’s ASD does not seem to be growing yet it is not getting smaller. As he grows it is growing proportionally with him. Not great news but not terrible news either. His large ASD is also leading to higher pressure on the right side of his heart, which is the definition of Pulmonary Hypertension (check out Medical Jargon for more info). That can be a very scary term in regards to respiratory issues. However, I always find the positive in each appointment and the best news is his function looks great. What more can you ask for in regards to the heart? As we have said for months James has a great heart and it is functioning very well. This kid rocks!

Surgery Update: While there is nothing to be concerned about at this time the original timeline for surgery was around 2 years old (if his ASD did not close on his own). However, with Pulmonary Hypertension possibly leading to more respiratory problems surgery will likely be around his first birthday.

All the surgeons will put their heads together to discuss the order of surgeries as well as which surgeries can be coupled together. The goal is to have him in the OR as few times as possible. Also, the goal is not to have unnecessary surgery or optional surgeries. What are optional surgeries? Surgeries which are not essential to his growth and overall health and tend to me more cosmetic. 

These EKG cords are bigger than me

Hospital Stay
Over the weekend of September 22, JD started to show signs he was coming down with something. He was coughing more and spitting up a bit (which he never does) and sneezing all the time. Plus, his oxygen levels ping-ponged all over the board. During Physical Therapy on Tuesday 9/25 JD seemed weak and not up to the challenges. We cannot always have a great session so I was not worried but I kept a very close eye on him. On the other hand, our Occupational Therapy appointment on Wednesday, 9/26 was a great success. He was attentive and ready to work performing some new moves for us (P.S. he LOVES his Occupational Therapist Kate – more on that in another post) so I thought maybe he kicked whatever was holding him up.

Yet he woke up early on Thursday, 9/27 spitting up more than ever (still not very much but more for him) and having lots of troubles swallowing. I spent the whole morning trying to manage his oxygen levels but they just kept dropping and staying down even after I put him on oxygen. The only time he seemed comfortable and calm was when he was sleeping but he had to be held – as a mom who was only able to hold her baby on a pillow for the first two months of life this was a wonderful confirmation that JD knows me and needs his mommy. I had planned to spend the morning preparing for the sleep study we had schedule that evening but instead I was rushing around trying to pack in case we would needed to stay at the hospital.

After a morning of dro  pping oxygen levels and a call to Dr. D I made the decision to head to the ER. To spare you the details:

Good News: Chest X-ray looked great with no fluid in the lungs – GREAT, GREAT NEWS. A call to the cardiologist confirmed his function looked good and there was no reason to believe the heart was the issue. Finally, a swab test came confirming he had  . . .  a cold.
Tricky News: A cold for JD can create additional complications for him. Dr. D is able to admit directly to Lurie’s and he recommended we stay at the hospital overnight for observation. 

It was the right decision although going from being VIP in the NICU to a general floor was a tough transition for us (well  . . . me). It was more of self-service model with very different nurses, however, it had a comfy chair, an in-room bathroom, and a TV so JD and I snuggled in for the evening.

Back in the ER waiting for the x-ray

Sick little boy

My view from the chair

The only way he would sleep is in mom's arms - I loved it!!!

By the morning JD seemed stronger and I was ready to head home. Not just yet! We had a few other appointments scheduled at the hospital for the day so we hung out until we could see the other doctors. It was a long two days.

Finally on 10/1 (Pumpkin Spice Latte Day) JD was back to normal. Not only normal but getting stronger. 

First day of the October is the first day to drink Pumpkin Spice Lattes - JD is pumped

Big Updates: JD’s EEG looks normal – YAY! This is great news. However, he is continuing to blink and sometimes jerk so we are meeting with the head of neurology to discuss possibilities. It does not seem to bother him and his oxygen levels do not change which is a good sign. More to come after our appointment.

Worst part of an EEG - the amount of time it takes to put on the 27 electrodes

Every 3 – 6 months the MIC-KEY Button for JD’s GTube will need to be changed (more info on MIC-KEY in Medical Jargon). This is something we were told we could do at home but the first change is always done at the hospital. In all honesty I was freaked out at the thought of changing JD’s GTube at home. The surgeon said it is extremely easy and we will get sick of driving to the hospital each time it needs to be changed (oh if he only knew how often we are at the hospital).

On Monday, 10/8 when we went in for JD’s MIC-KEY change I was prepared for a very detailed and very precise procedure. The actual change took a total of 15 seconds – seriously, opening the box took longer. Turns out the doctors were right it is super easy. If we were able to shove an OG Tube down his throat then this will be cake. I made another appointment just in case but pretty sure we can add this to our medical resume.

Best News: After the GTube change JD seems to be much more comfortable. The MIC-KEY was slightly shorter/smaller than the previous one and does not move around as much. Crazy awesome. JD rarely “crunchies” during or after a feed anymore and his reflux seems so much better. It could be a host of factors – he is bigger, he is stronger, he has great therapies – but for some reason he is more comfortable. Our goal is to keep as comfortable as we can throughout life so check this one of the list.

6 Months Later . . .
Receiving our Wolf-Hirschhorn diagnosis opened up a world of scary possibilities for our little James Douglas. Before he was born we had no idea what to expect from our little man. However, now that we have spent 6 months falling in love with him we expect everything from him.

6 months ago I would never have imagined we would be here . . . in a very happy place with a healthy boy. Doom and gloom was all I could think about before JD was born but the moment we heard that first cry I knew this kid was here to fight. I do believe sometimes the best gifts are the ones you don’t even know you want. JD is the gift we did not ask for but he has filled our hearts with such joy and love that looking back I wish I had the foresight to put  him on our wish list.

The next six months will be important for JD’s future but I know he will continue to get stronger everyday and continue to bring so much joy to everyone that meets him.

Look how far we have come . . .

3 hours old
24 hours old

6 months old