Dear Jen, a Letter From Your Husband.

Sorry we have not posted in a while, but we have been without internet for a few days and have zero time to be here for ATT to fix it.

Things are going well, but I will let Jen do updating later this weekend. Besides, I cannot write like her.

I am providing this update, while she is out with Connor, as I have struggled with a way to thank her for all the things that she does for me and for our family on a daily basis. Very few can understand what she does 24 hours a day/ 7 days a week, but I thought the least I could do was share a little public appreciation for her.

_____________________

My heart, My soul, the Love of My Life

A sacrifice…appreciated by few.

A love…unconditional and true.

How to thank her, I have not a clue.

So this poem, for now, will have to do.

Thank you Dear,

For all your strength and power.

You lift me up in my darkest hour.

Thank you Sweetheart,

For your comfort and endless love.

You’re a savior, an angel, a gift from above                                              

Thank you Sunshine,

For never wavering and being strong

And being by my side in this journey, no matter how long.

Thank you Jen,

For raising both Connor and JD

Thanks to you, both boys are amazing.

I could never do the things you have to

I could never handle the stresses that you do

The world will never understand how much you give and give

& I will never know a stronger woman, for as long as I live.

Showing you my thanks, I was not sure what to do,

But Jen, you are amazing and I will always love you.

Jen getting us together for some Family Olympics

JD Sleeping...almost 6 months old

A Beautiful, Difficult Day

When I was a senior in high school I spent one crisp October day attending THREE different funeral services for THREE 16-year old best friends who were juniors in high school. These 3 lovely girls were on their way to morning swim practice the Friday of Homecoming less than a mile away from school when a very drunk man ran a red light ending their life. Even at the age of seventeen it was not lost on me how difficult that day was for the girls’ parents.

The thing I remember most about that October day was the final service of the day. A shy, pretty girl slowly walked up to the alter to read her final letter to her best friend. The girl had suddenly lost her father earlier in the year making this day more heartbreaking for her. Through tears while holding a teddy bear she said words I will never forget “Don’t worry my dad will take care of you now.” I was in awe. It still amazes me today how a 16 year-old girl could create such striking words for her final send off to her best friend.

What a wonderful thought. Those who have passed before us are waiting to help us once we transition to heaven. It was the first time I had ever looked at death with a sense of hope. I have never forgotten those words and I never will.

Fast-forward many, many years to a cloudless September afternoon where I once again found myself standing in the sun watching a family grieve over a child taken too soon.  It was a beautiful, difficult day. I say it was beautiful because the sun was bouncing off ever corner with warm arms wrapping comforting hugs around us. Nothing keeps the clouds away in Chicago on a September day but Little J had the heavens smiling down on his mom and dad.

My sweet, sweet cousin lost her 5 month old son in December 2011, which made me question “why?”. While we may never know why Ben-G was taken from us so soon it brings me comfort to know he has been waiting for Little J to join him.

To Little J, you brought so much light to everyone and I know your light will continue to shine from above. Take comfort, our little friend, knowing you have another angel waiting to take you under his wing to be your wingman forever more.

Life is a Story

Sometimes life starts out like every other story but in a split second that story changes. Today started out with a sigh Thank goodness it’s Friday. Today we had our 5^th appointment in 4 days but this was with Genetics. We were interested to ask a few questions but we have learned so much through the other families that we are very well versed.

Throughout my rush to feed Connor, dress JD, and hide the bags under my eyes I turned on the radio. Most mornings I try to listen to Eric & Kathy on The Mix for at least a few minutes as it helps me feel partake in adult conversations – even if I am just listening. But this morning was different. I wanted to tune in for their 36 Hour Radiothon benefiting Lurie’s Children’s Hospital. Eric & Kathy have been hosting the Radiothon for 13 years and each year I turn it  . . .off. Other years I have been unable to handle the heartbreaking stories. But this year was very different. I turned on the radio at 7am to listen to every second and soak up every story during the 36 hours (I continue to listen as I post this).

Let me take a step back and remind you of the post where I mentioned JD's NICU BFF Little J.

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Thursday, 5/28

Today felt like the last day of freshman year in college. JD’s new BFF (Little J) was discharged. After being moved into the loud, cave room we starting chatting with the family across from JD. Little J’s mom was at the hospital even more than I was so it was nice to have someone to talk while sitting holding our kids for hours.

Like I said, it felt like college. Little J has been at Children’s for awhile so I was extremely excited they were going home, yet, I was sad I was losing my mom friend. With an exchange of emails and phone numbers and a “stay in touch” I was left wondering if we would actually get together in the summer (we have been texting so maybe we will “see you this summer”).

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One thing I did not mention is two days after going home I walked into the hospital only to see a sad smile and a wave from Little J’s mom in the isolation room (in the old hospital they needed to keep a re-admitted baby in containment until they can rule out infections due to the fact everyone shares rooms). I was heartbroken for Little J and his family as they had already been at the hospital for the first 6 months of his life but only made it at home for 1½ days. He had a blue spell at home (just like JD would have a few weeks later) and needed more care. Little J’s mom and I become even closer having lunch and frequent in-room chats about our little men. We both wanted nothing more than for the other family to head home. We did not care who went home first or when but we just wanted both of us to be at home with our families.

JD was the first to leave and Little J’s mom could not have been happier. We continued to text over the weeks and stay in touch with updates on both of our boys.

This brings me to 7:43am this morning when the story changed . . . Little J’s mom texted me “Little J made his transition to Heaven at 4:44am – Friday, September 7^th.” I crumbled onto the floor sobbing uncontrollably. Connor was eating breakfast and said “Oh no, mommy’s crying. Don’t be sad mommy I love you.” And I lost it even more. I wanted to hug her for hours and give her my heart to borrow because I know her heart is currently broken.

I cried all morning leading up to our appointment. I wanted to do something, anything to help but I was helpless. After layering on more and more cover-up under my extra puffy eyes we headed out to our appointment.

It felt wrong going to Lurie’s knowing Little J was not there anymore. As we drove through the parking garage I looked for Little J’s mom’s White SUV to be parked in the same spot it was every single day I was at the hospital. It was not there. My heart sank even more.

JD’s Genome

The main topic we wanted to discuss today was JD’s deletion size. As we have talked to other families and researched in more depth it seems JD’s deletion is rather large. We were looking for confirmation as well as information on what that would mean. Without getting into very scientific, but interesting, details – yes, JD had a significantly large deletion. Based on the fact Wolf-Hirschhorn is very rare AND it is more common in girls JD is our very unique peanut. Now, on top of that add his significant deletion, which is (and I am quoting) “very, very, VERY rare.” JD is even more of a miracle than we originally thought.

In general there is very little research on WHS and there is even less research on a deletion his size. Of the teeny, tiny bit of research they have on larger deletions JD is more likely to be on the severe side. Basically he is at a higher risk to have all the things he has. What makes our Genetics doctor and counselor better than most is they did not discuss a gloomy future. Honestly, they said every kid is so different it all depends on how the families work together. There is no predictor of future development but JD is currently on the strongest path for him.

Will he have challenges? Yes. Will he be delayed? Yes. Will we sit back accept his significant deletion? HELL NO! (Sorry mom). He has a significant deletion but that will not stop us pushing him to do his best . . . and knowing the fighter JD has been thus far he will not stop pushing himself.

Surprisingly, we left feeling lighter. Some people might see that discussion pessimistically, but to us today, it was a great meeting. In summary, JD has a larger deletion yet he is doing TONS better than he should on paper. 5 months in with only 1 surgery (G-tube), no oxygen (we have stopped using it at night), 2 preventative medicines, no serious organ issues at this time, continuous growth, a few smiles, gaining neck control, and lots, lots, lots of love. This kid is amazing! It actually made me feel better hearing he had a larger deletion knowing Nate and I along with our parents, friends, and family have helped him not only make it to birth but also to 5 months.

I cannot say it enough but James Douglas is an absolute miracle. He is a champ every single day, he has a big brother that wakes up in the morning to say “Hi JD, I love you,” and he has given us the opportunity to bring very special people into our lives.

Without JD we would have never known Little J. We would have never looked into the big, beautiful eyes of Little J or watched the nurses dance around Little J to see him smile. Because of JD, Little J’s story is forever imprinted on our hearts.

Nate and I walked to the Sky Garden to see part of the Radiothon broadcast from the hospital. Eric & Kathy were on break but I was itching to talk about Little J. I know Little J’s mom is a private person (which is why I call him Little J rather than his full name) but I just wanted to tell someone his story. I did not want the day he earn his angel wings to be forgotten.

As I dropped Nate off at work I created the perfect scenario to honor Little J today. When I got home I called into Eric & Kathy’s Radiothon to keep Little J in everyone hearts. A wonderful volunteer, named Jennifer, answered the phone. She took my information and then she asked the question “would you like this to be in honor of anyone?” Through a tear-stained face I said, “yes, my son was in the NICU for 3½ months. Just this morning one of his little buddies past away and I want our donation to be in his name.”

Jennifer, the volunteer, said “oh my gosh, I am so sorry. WOW, thank you so much for your donation.” She encouraged me to leave a message on the board as they were reading some on-air. So I did and I emailed Kathy the following:

Every year I listen to Eric & Kathy’s Radiothon for about 2 minutes and every year I turn it off after about 2 minutes because I could not take the heartbreaking stories. This year I turned on the Radiothon at 7am to listen to every second and soak up every story during the 36 hours. Why the change? Our 5 month old son, JD, spent his first 3.5 months of life in the NICU at Children’s/Lurie’s. We are so blessed to have our son home with us even on the beginning of this very long road. But today was not about JD - today turned out to be about one of our little buddies in the NICU - Little J.

As I mentioned, I turned on the radio at 7am. At 7:43am Little J’s mom texted me to let us know Little J had earned his angel wings early this morning. I crumbled onto the floor. I wanted to be back in our shared room in the NICU holding our babies and chatting with the nurses. I wanted to hug her and give her my heart to borrow because I know hers is currently broken. I knew I would listen today and find the perfect time to donate. Instead, of my original donation I doubled it and made it in honor of Little J. Our son has a long road full of challenges and Lurie’s will be right there with us the whole way. As I snuggle with my son today I think of Little J and his family and this is for them!

20 minutes later the batteries in my radio ran out (I know super lame I am using a radio) so I started to update The Mix app on my phone so I could continue listening. 2 minutes later, a friend texted me to say “I hear your story on the radio.” WHAT!!!! They were 12 hours into this event, I had listened to about 10 hours of it and I am missing Little J’s story. By the time I was up and running the story was over but Kathy was pleading with listeners to call in for Little J.

My friend told me Kathy had a very hard time reading the letter because she cried the whole time. Little J touched her heart. Little J’s story led into a song and when they came out of the song Eric said “WOW, every one of our 40 volunteers is currently on the phone. If you are getting a busy signal keep trying but thank you for filling up our phone lines.”

For the first time all day I cried tears of joy. I would like to think those 40 volunteers were taking donations in honor of Little J. No other stories were shared leading up to the song and no other stories were shared coming out of the song. It was 6pm on a Friday afternoon and yet a phone bank (which had not had more than 10 calls at a time all afternoon) was full of donations.

I believe life is a string of events that tell a story. You need an early set-up in order to understand the development and payoff in the end. Today was that perfect string of events. I listened to Eric & Kathy’s Radiothon for the first time in years only to find out about Little J’s angel wings. We had our genetics appointment only to find out while he is severe on paper JD is outshining his rare, rare, rare, RARE deletion. Coming out of our appointment feeling revived I was able to honor Little J by donating in his name. Rounding out the story with Little J inspiring a whole phone bank to light up with additional donations.

Thank you Little J for your bright eyes and smiles. You are forever in my prayers and thoughts. I know JD has a very special guardian angel watching over him.

Please continue to honor JD's best buddy by donating to the Jackson Chance Foundation:
http://www.jacksonchance.org/donate/

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