Quick Note: This will be the first post of a 4 part series profiling JD.
When you hear the number 13 what is your first thought? Unlucky, right? Even if you don’t believe in luck you still think about 13 as this strange number everyone should avoid. Triskaidekaphobia is the fear of the number 13 – this is medically documented fear. Most tall buildings throughout the U.S. skip right past the number 13 taking you from 12 to 14. If fact, JD’s NICU was on the 14th floor at Lurie’s Children’s Hospital yet there was no number 13 on the elevator so technically it was the 13th floor. We even had friends who considered waiting a year to have a baby because they did not want their child’s birthday to have the year 2013. Crazy huh?
Well, I don’t buy. Big whoop. 13 is just another number. I find it be an ugly number (1 and 3 together – ugh….ly). I much prefer even numbers. With all that I said, I do not find 13 to be scary or unlucky . . . at least until this year.
We are officially 11 weeks into 2013 and we have spent at least one day (if not more) each week working through some medical occurrence regarding JD.
The year began with confirmation the hole in is heart is, as Connor would say, big and big and BIG (more on that). Followed by a bumpy ambulance drive down Lake Shore Drive for our first hospital stay of the year (unfortunately, not our last) due to RSV. With seizures, an intense blister leading to an ER visit, random colds, EEGs, heart tests, therapies, and follow-up doctor’s appointments I am beginning to believe all the hype around that ridiculous number. People are trying to get rid of the penny maybe we should get rid of the number 13.
As I have spent more time discussing JD and his medical complexities with new and old doctors I realized . . . this is confusing stuff. With that in mind I have decided to create a profile of this handsome little man of ours. We will start at the head and work our way down to the toes. I will do my best to keep it top line . . .but lets be honest these will be long. Sit back with a glass (actually it will take a bottle) of wine, put on a fresh pot of coffee, and some yoga pants as you read the profile from the noggin to the tootsies of this handsome little boy.
The Noggin (Head)
From the front, JD’s head is perfectly round and adorable. However, the back of his head, while still adorable is not perfectly round. After many months lying on his back in the NICU plus not being cleared for tummy time until he was almost 4 months old and the lack of full neck support his head has become flat on the left side.
In December, JD had a Starscan, a machine which takes a 3D image of his head, to create and mold a custom helmet. The helmet has space in the back to keep JD off his head while he is lying down allowing it to grow. When kids are on their heads for too long it can effect how their heads mature by restricting growth.
Good news: His head is only mildly flat. In order to qualify for a helmet JD needed to fall within a range of “numbers” (calculated from the Starscan); he barely fell within that range. The process usually takes an average of 4 months of 23 hours/day helmet wearing but JD tends to grow a little bit slower so he may be rockin’ the head protection for a bit longer. Although, his numbers tell us we have less work to do. In the coming weeks we will be adding some bling to the helmet so stay tuned for the designer version.
The Noodle (Brain)
JD’s seizure activity was explained in great detail in the previous post. Two weeks ago, our 6 hour EEG went well as the doctors were able to extract the data they needed to gather some answers. During the EEG it was my job to push a button anytime I saw seizure or questionable activity. During review of the data some of the events were in fact seizures while others were not. Judging from the doctor’s reaction we have nothing to worry about at this time. Keeping the seizure activity in check is key for upcoming surgeries. As of now, the doctors “see no brain reason not to move forward with surgery.” She actually said, “Neurology can be lower on your list of concerns.”
Good News: Dr. Neurology continues to be impressed with JD’s health, his growth and his reflexes. Stay the course is the prescription from the doctors. He will continue to receive the same dose of his seizure meds (very low dose of a “light” seizure medication – there are some meds which are very intense with powerful side effects, lucky that is not necessary for JD at this time).
|Snuggles at our 6 hour EEG|
The Windows to the Soul (Eyes)
Let’s be honest, there is nothing cuter than a little kid with glasses. And I have the hipster glasses along with a fedora all picked out for JD . . . if he needs them. Wolf-Hirschhorn puts JD at a higher risk for glaucoma and vision problems. At this point we are only being followed by ophthalmology to remain ahead of any future problems. Every 2 – 4 months we have an appointment with the corky Dr. Ophthalmology to check out JD’s eyes and test his eye pressure (glaucoma test).
Good News: Thus far things are positive and his eyes are not a concern. His pressures are within normal range and his vision seems to be okay for now. With his therapies he is tracking well with his eyes and enjoying watching his brother fly to infinity and beyond – over and over and over again. Once a day for 30 minutes we patch his left eye to help strengthen his slightly droopy right eyelid. A droopy eyelid can effect vision in the future but as of now there are no issues with his right eye.
Currently, we are just waiting and watching so I guess I will hold off on the baby Ray Bans.
|Look deep into my eyes|
The Sound Canal (Ears)
Babies are administered a test to screen hearing shortly after birth. If a child fails the newborn hearing screen they will be given a second more in-depth hearing test called an ABR. JD failed the first test twice during his NICU stay. Now . . . I have never received a failing grade in my life; however, I do not blame JD seeing as he had 4½ less weeks to study due to being born early.
After the failed hearing screens the powers that be tried the next level of testing, an ABR – twice - while in the NICU. Nope, no good. He needed to remain asleep for the duration of the test but alas he was partying. Therefore, we waited until we were outpatient. The results were updated in the October post.
Bottom line: JD has some hearing loss meaning he can hear but at lower tones. It’s obvious he knows my voice and Nate’s voice and Connor’s voice as he will turn to watch us when we speak. The previous next steps were to place tubes in his ears, test with another ABR, and reassess. However, due to the new seizure activity as well as his heart complexities (will discuss more in the heart section) the tubes are on the backburner for now.
JD is relieved given Connor’s passion for loud singing while playing his guitar or drums.
|What'd you say? I cannot hear you over my big brother|
The Cleft Palate (Mouth)
From the outside JD’s mouth is small and perfect but from the inside it’s all one big open area. As mentioned in the Medical Jargon section a cleft palate occurs when the roof of the mouth is not completely closed. On occasion both the lip and the palate can be cleft or just the lip or just the palate. In JD’s case it is only the palate but not the lip.
An individual with a cleft palate can learn to use a specialized bottle prior to surgery. Unfortunately for our little man due to his recessed chin, high risk for aspiration, and early-on neck restrictions we were unable to push the bottle as aggressively as we would have liked. We tried and had a few bright moments of success but with his many other medical obstacles we felt it would be counter-productive to his progress.
Normally they look to fix a cleft palate around a year of age. JD was on track to have the palate fixed shortly after his first birthday; however, with the addition of his seizures, the upcoming open heart surgery (more on that in the heart section) and the fact he breathes through his cleft into his nose the cleft repair has been pushed down on the list of priorities. For us, this is not a concern as he gets 100% of his nutrition from his G-Tube and he is growing at a good rate.
Bonus News: For all of JD’s medical complexities he was put together perfectly. Having a small, recessed chin pulls the tongue to the back of the mouth restricting the airway. Many children with JD’s chin would have already had jaw distraction surgery due to major breathing issues . . . but not JD. His cleft palate created a new airway for JD allowing him to breathe with ease in spite of his recessed chin. Balance is what this kid is – Ying & Yang
|This is the biggest smile you will get out of me while I am in a duck towel|
The Chinny Chin Chin (Micrognathia)
As we sat waiting to see the doctor at our 20-week ultrasound, Nate and I stared at the profile picture quietly pondering the exaggerated overbite. It was the first sign something was amiss. Just a few moments later Dr. OBGYN would tell us about the other anomalies in the ultrasound thus starting our journey.
Confession: In the beginning, I was nervous about JD’s future appearance. I was concerned a recessed chin would enhance the difference in JD’s appearance. That was before he was born. Once I saw him I feel in love with that chin. When we fix the cleft palate we will have to fix the chin as well. Fixing the cleft with close what we believe to be a strong airway for JD so we will need to pull his chin forward to open the airway in the back of this mouth.
Additional Confession: I am very sad about pulling his chin forward. I love it. It shows off his cheeks with no distractions. Once again, our prenatal fears for JD disappeared once he joined the world.
The recessed chin is also a concern for breathing when he goes under anesthesia. Leading up to his cardiac cath they were very concerned about his breathing while being sedated and the team was all set to use a breathing tube (a tube in and of itself can be a problem). I know I sound like an annoying broken record but JD proved everyone wrong. He was breathing so well they did not intubate him. This kid is a miracle.
|Big cheeks make up for a small chin|
The Tilt (Neck)
Recap -- JD was born with his C1 and C2 vertebrae out of line (his cervical spine was kinked). From day 3 of life he has worn a soft collar to help keep his bones and muscles straight as they grow. Amazingly the makeshift soft collar allowed his neck to strengthen and straighten over the past 11 months. At our last x-ray the doctor was so pleased he now only wears the collar at night or in the car.
Good News: Discussion of neck fusion surgery has been pushed to the bullpen. We work on strengthening his neck everyday as he pushes to hold his head up all on his own.
|Just taking a break from working on my neck|
**That was a long one. Hope it only took one bottle.