A Delayed Happy Five Months

Per usual I am late with the 5 months pictures but they are super cute this month so it was worth the wait. It’s amazing how fast 5 months rushes by when you spend 3½ of them in the NICU. We have officially been home for over a month and it is crazy, hectic, exciting, remarkable, fast-paced, snail’s speed, confusing, organized, unorganized, full of process, void of process, sleepy. . .but mainly PERFECT!

10lbs 11oz  |  23in

 

Turns out our doctors missed us so much they have requested we keep a full calendar of appointments. Here’s a snapshot (I did not say quick) of each service that follows us to bring everyone up to speed on JD’s outstanding progress.

Appointments (a bit delayed but whose keeping track). . . .

Plastics (8.8.12)  – Cleft Palette + Micrognathia (small chin)

Dr. V is what you would expect from a Plastics guy - very sure of himself and very set in his answers (as I have mentioned in the past these are good qualities in a doctor). However, JD “amazes” him. Why? Because JD breathes remarkably well given his very small chin. To us, JD’s chin is adorable and not too small. His chin allows us to have an uninterrupted view of his plump cheeks, which, next to his eyes, are his best facial feature. Yet, the expert tells us his chin is very small so we nod our heads in agreement.

As JD continues to amaze Dr. V a dentist walks into the room (Dr. V invited him) who is writing a book with a chapter focused on micrognathia – not gonna lie the book sounds quite boring. Dr. V. points out to the dentist and the resident they must observe more than just the physical anatomy to see the whole picture (JD is always a great learning experience for many people). Some children with chins which look “much better” have a terrible time breathing and will require surgery while someone, such as JD, who has a “very small chin” can breathe well on their own without surgery. This was fascinating for the book-writing dentist. He would love to talk to me further about JD and his chin . . also if I am looking for a pediatric dentist he would be happy to take JD (or Connor) on as a patient(s) . . .umm, thanks.

The book-writing dentist was extremely nice and truly interested in JD but seriously, how long can we talk about JD’s chin – it’s small, yes, but he defies the odds and breathes well. Obviously, I expect nothing less from this kid.

On to the cleft . . . and you thought this would be a short post, ha . . . his cleft is wide. We don’t have too many details yet but I do know Dr. V will close it in two steps. The first will start around 10 months when Dr. V will close the back portion which will in turn help prepare the front to be closed a few months later. That’s all I know for now but we go back at 7 months to find out more details. Hope the book-writing dentist is on vacation that day or I might have to schedule an additional hour of time.

Outcome – No Mandibular Distraction at this time, the cleft will be repaired at 10 months, and a book-writing dentist wants to discuss JD’s chin.

Who is talking about my chin?

NIUC Follow-up (8.13.12) – Development

Many children in the NICU will have challenges in some future areas of development. To ensure the babies are continuing to thrive at home each family is requested to head back to the hospital for a NICU Follow-up appointment. During this appointment all the developmental services come through to check the baby’s progress plus the Nurse Practitioner and a NICU doctor. Obviously, everyone was quite impressed with JD.

Doctors: JD continues on a strong growth curve for both weight and height. The goal is to make sure he continues growing. Concerns begin when a child falls off their growth curve. Given his size, he is not on the general growth chart but he is dominating the WHS growth chart in the 75^th percentile for height and weight. 

Physical Therapy: Holds himself in a strong sideline position on each side while bringing hands together. Shows strong tummy strength. Has the ability to hold head up (with the collar on) while sitting up or being held in standing position. PT quote: “Looks fabulous! Looking good at everything.”

Speech: Impressed with pacifier use. Work on more tastes on pacifier. We scheduled a follow-up feeding appointment to hopefully get him to start taking more by mouth.

Outcome – James is showing strong signs of development -- overachiever

Not sure about this sitting up stuff (btw: Those are not my mom's hands, her Irish skin is much pastier)

ENT (8.13.12) – Ears

After cleaning out his ears Dr. R thinks he may need tubes in a few months but it can wait. Also, we will do a repeat ABR hearing test as he has now failed two. As we have mentioned in the past, we know he can hear because he turns to see who is talking, he moves towards sounds, he jumps when something startles him  . . . but we do not know how well he can hear. According to one of my best friends, Dawn, who happens to be an audiologist “no need to worry about his hearing, we can totally fix that.”

Needless to say, this is far down on my list of worries. Besides, the way kids these days listen to their iPods with their Beats headphones there is a good chance 80% of the population will need hearing aids in the near future.

Outcome – Possible tubes and future hearing aids, like all the cool kids

Urology (8.14.12) – Kidneys

Continues to have possible kidney reflux on his left side which can lead to infections. However, JD has been on amoxicillin for a few months as a precaution to help prevent infections. Say what you will about medicine for kids, if it helps keep the fevers which cause the seizures away we will take it!

Outcome – The doctor will continue to monitor his kidneys.

Neurosurgery – Cervical Spine + Tethered Cord

Good ol’ Dr. A! It was interesting seeing him on his turf rather than our quaint little NICU room. I get the feeling he rather likes JD and his cervical collar. We started the day with a C-Spine x-ray that was very strange. They strapped JD into a chair-like device to get the shot. Hmmm, putting an infant with cervical spine issues who has yet to master holding his head up into a chair is rather … odd. So it was no surprise when the tech in the back said “the picture looks crooked.” However it was surprising when the tech up front said “it should be fine.”

“Umm, when we were in the NICU they always took pictures of him laying down with someone holding his head to make sure it was straight”  . . . is what I should have said.

Alas, I did not say anything which led to Dr. A walking into our appointment saying “well, the x-ray looks terrible. His neck looks worse than before.” Awesome.

“However, just looking at him he looks great. Let’s continue with the 3 hours collar-free time a day.” We have also been cleared for tummy time – YES, I love tummy time – as well as sitting up allowing his neck muscles to start bulking up.

Two more items to add to the neurosurgery list:

1)    The urologist mentioned seeing a Tethered Cord (see Medical Jargon for definition) in the report from our NICU stay. TCs are very common with our buddies in the WHS family but no one mentioned this to us during our 3½-month stay. Turns out yes, this is a possibility for JD but Dr. A will reevaluate around 6 – 9 months adjusted (for JD that would be about 7 -10 months) so we have some time. Great, it is already forgotten.

2)    While spending so much time on his back, JD has created a pretty sweet flat head. As of now, the doc is not concerned. With clearance for tummy time this should help . . .however, there is a strong possibility we may need helmet therapy. Just add it to his hardware. We will revisit his flat head around 6 months. Once again, it’s forgotten.

Outcome – Tummy time, 3 hours collar free time, possible tethered cord, and maybe a helmet. Darn you neurosurgery adding more to my list. 

Dr. A says I look great

First time tummy timer

Not sure about this tummy time thing

Exhausted

Getting stronger

Orthopedics – Clubfoot

After working with PT in the NICU JD’s foot was easier to cast for the docs. We only needed 4 casts (instead of 6) with no surgery! Next step: the snowboard. When they put on the boots I thought they looked pretty cool, like ski boots. Then they put on the bar and I thought “skiing is too easy for this guy, he is a snowboarder.” Thus, his feet orthotics will now be called The Snowboard.

JD is a happy baby who never (and I mean NEVER) fusses yet Day One of The Snowboard and this kid hates us. The next morning I picked up the little Houdini only to find his snowboard stayed in the bed while he was being lifted up. Good for you JD but this means I need to tighten your snow boots.

Outcome – 23 hours of wear each day for 3 months (we are allowed up to 1 hour with no snowboard). After 3 months we drop down 2 hours every 2 weeks until we are only at 12 hours a day (around 6 months from now). Ugh, this is a long process. Good thing he looks like a pretty dope snowboarder.

Step One: Plaster saw making the final cuts

Step Two: Popping off the final cast

Step Three: Looking at some really cute tootsies

Step Four: Fitting the ski boots

Step Five: The snowboard - watch out Shawn White I'm coming for you

Nurse Amy + Nurse Beth

During our Lurie’s visit with the doctors we visited our favorite nurses on the 14^th floor. I seriously miss seeing the nurses everyday. After 3½ months, they become your friends and you miss catching up each day. Both Nurse Amy and Nurse Beth rushed out to see their little (now big) man. I felt like such a proud student showing off my work at how well JD is doing at home. Pretty sure I left glowing.

Outcome – The nurses in the NICU are fabulous

JD at 2 months with Nurse Beth + Nurse Amy

Connor

Loves his little brother with all his heart. Plays with him, hugs him, loves him, enjoys him everyday.

Outcome – Two handsome and loving brothers.

Two Brothers: camping in the living room

Two Brothers: wearing matching shirts

Two Brothers: watching football - prepare to see a lot of Longhorns, Illini, and Bears football gear this season

Two Brothers: sharing a joke

Two Brothers: working together - Come on little brother, you can do it!

Cousins: Connor has a great role model in his big cousin Andy