Monday, January 25, 2010

There's no crying in Baseball!

But there is crying in the Stewart house! We are very sorry to our loyal fans for the delay in this post, it has been a very trying time since returning home.

Our baby boy has endured a rough 2 weeks. His perfect and wholesome world has been turned upside down, shaken and stirred, smacked on the butt and told to figure it out all over again. Jack has shown great improvement since the surgery, but he has yet to regain his former self. Before surgery we joked about his personality changing, "If he comes back with an attitude, we want our money back!" and "If Jack cries after the surgery, we want the surgeon to go back and fix it." Little did we know the life changing experiences we were going to encounter.

Last Wednesday, the 20th, we visited with Dr. Singhal, the surgeon, for our one week post op visit. We tried to explain that Jack is not a fussy baby nor does he cry uncontrollably and yet since bringing him home from the hospital he is fussy and that he does cry, a lot (and very loud I might add!). And while Stefanie and I are explaining this horrible home experience we are having, Jack proceeds to blow bubbles and motorboat his lips at everyone in the room. WOW!! Did we look like idiots! Thanks son, for making your mom and I feel like we have no idea of what we are talking about to your surgeon! Dr. Singhal looked at us, smiled and said, "He looks pretty good to me."

After looking like the idiots in the village, we started to ask about when kiddos start to eat on a normal feeding schedule since Jack hasn't shown much interest in eating his baby food at all. Dr. Singhal started to explain how the swelling and bruising in the temporal area can be painful while chewing when our Academy Award winning son opened wide enough to shove not 1, not 2, but 3 fingers in his mouth and begin to gnaw on them. This time the good doctor's reaction was slightly annoyed, "Hmmmm...guess that's not it either. So.......any other questions?"

Jack, being our little devil in disguise, has continued to be quite a handful. There are happy times and smiles in between the bouts of screaming and crying and whimpering. We have had several nights where he wakes up crying and will refuse to go back to sleep for 2-3 hours. Which means Stefanie and/or I are also up for 2-3 hours. It is like having the newborn experience all over again. In the morning and afternoon he detests taking a nap and in the evening he has worked himself to the point of exhaustion and...yep, you guessed it, he is too cranky to fall asleep. The single hardest parental experience, other than the surgery, that Stefanie and I have had to deal with has to be the utterly helpless feeling of not being able to comfort our child. Not sure what to do with a crying baby......we've never had one. The only thing that seems to calm him is picking him up and walking around. We don't want to encourage the "If i cry, they will pick me up" mentality, but what else can we do? We constantly are asking ourselves...what is it? Is he in pain? Is he teething? Is this just normal 9 month old behavior? Does he need to cry it out? Did he get used to our undivided attention for the last 2 weeks? Will it get better when we all get back into a routine? Is it separation anxiety? The list goes on and on....

Jack's eating habits have also drastically changed. He relies more on the bottle than ever before and still won't eat the foods he used to love. However Puffs and Cheerios are now the food of choice. I will admit he has had a few shining moments when it comes to meal time, but the road ahead seems long and bumpy!

On a softer note, the other night Stefanie and I were watching TV wishfully thinking that Jack would fall asleep sitting in between us on the couch since he would not go to bed. After a while of sitting Jack turned his head to Stefanie, pulled his arm from under the blanket and reached for her. He did not make a sound nor did he move any body parts other than his head and arm. He was close to her lips so she kissed his little hand. He then let his arm rest and smiled at her. I think it was his way of saying, "I love you mom." A precious moment in time as a father and husband.

And the good news of the day is that Jack has kicked his narcotic abuse and pain medication habit! Our little junkie is no longer on any pain meds. He surprises us every day with how quickly he is recovering. He seems to be regaining his strength and is getting used to carry around his big ol' head. He doesn't appear to mind his helmet too much since he only has to wear it when riding in the car or when playing if there is a chance he might bump his head.

Hopefully the next post won't take so long. Thanks for thinking about all of us!

~Cory & Stefanie

Monday, January 18, 2010

Eating well....All of us! ;)

Mr. Jack is feeling better and slowly starting to eat his regular food again. As you can see, Puffs are a treat he remembered to be on his "favorites list". However, he has not remembered squash, sweet potatoes, green beans and rice cereal to be on that list. Stefanie and I have allowed the picky eating since the surgery, but that will more than likely end today! Having Jack follow a schedule was hard enough the first time around so we do not want to drift further away than necessary. His schedule will become more rigid as time goes on until we are back to normal.

As for Stefanie and I, we are eating a bit out of whack as well, but in a very good way! We have been blessed with so many friends and family wanting to help with housework, running errands, grocery shopping and delivering meals. Unbelievable acts of generosity that we only hope to have the opportunity to repay in the future! (And we don't mind eating like kings for a while too!)

Jack condition, craniosynostosis, was at first going to be a relatively routine surgery for Dr. Singhal. Upon the first incision he realized that Jack's condition has advanced rapidly and become "progressive". This was a term that was unfamiliar to us in relation to craniosynostosis and Total Calvarial Expansion and Reshaping (the medical term for Jack's surgery). Stefanie searched "progressive craniosynostosis" and discovered that Jack's condition occurs in <.00002% (approx 1 out of 50,000) of babies born today. With that kind of luck Jack needs to play the lottery as soon as possible! He was experiencing elevated intracranial pressure and the surgery couldn't have come sooner. Dr. Singhal mentioned that his brain welcomed the newly found real estate by expanding as the suture lines were opened. He described it like the brain "mushroomed" because it had already filled the available space inside his cranium. We are very thankful for the findings of Dr. Miller, our pediatrician, and the abilities and experience of Dr. Singhal, the surgeon for identifying and correcting our baby's little noggin! Enough of the medical stuff, we are going to eat some of the fabulous meals that our friends and family prepared for us.

~Cory & Stefanie

Saturday, January 16, 2010

Settling in at home.

Hello everyone!! We have started to settle in at home and boy have things been different without the help of the hospital staff. Remember the poo situation? Well his plumbing has started and WON'T STOP!! He has been a poo machine! While we appreciate the functionality of his system, we are going to run Pampers out of diapers and wipes very soon! Heck, we won't have any clean clothes left either! All kidding aside, Jack is doing well. He is eating better all the time, he is sitting up and playing more as time goes by. The light in his eye is returning and we have seen some of his charming personality start to peak through the subsiding pain.
Thanks again for the extraordinary support and for taking time out of your busy lives to think about us, pray for us, put together care packages, send cards, send flowers, the cookie bouquet, visiting us in the hospital, visiting us at home and making meals. We are surrounded by people that make this a wonderful life! Thank you!
By the way, check out the rubber duck picture from the 1st or 2nd blog compared to the one of earlier today. I know that he still has a lot of swelling, but wow, I think his head might have it's own weather system. He has one big noggin!!
We will blog again soon.
~Cory & Stefanie

Friday, January 15, 2010

Home at last, home at last!

That's right! We are finally home and arrived about 2:30pm and just finished unloading the car, saying hi to the dogs and starting the unpacking process.
Thanks again for the wonderful thoughts and prayers for Jack, Stefanie and I. God does indeed answer prayers!

~Cory & Stefanie

The Helmet Dance!

I told you it was the fashion accessory of the season! If Stefanie had one she wouldn't have gone to the ER on Christmas Eve!!
As you can see we have helmet! It's blue, it's soft, it's got a chin strap and it's cooler than the other side of the pillow!
Jack is currently resting peacefully and is steadily weaning off of the pain meds. Roxicet is the last bit of feel good drug he is abusing at this point. Which brings up the my next little bit, a song we wrote for Jack while he was on one of his drug induced trips through space, time and sound. Here it goes, "I'm a little junkie, yes I am, My name is Jack, but I don't know where I am!" Still working on the next verse. Any ideas?
More good news, Jack was able to get the old number 2 moving again. We were very excited this morning when that special aroma wafted our way. Then I promptly gagged and dry heaved. I can look at anything, but I am not sure why smells make me want to run to the other room. And he was stinky!!
Today Jack should be able to deliver a great birthday present to me......
Going Home!
~Cory & Stefanie

Thursday, January 14, 2010

Making progress.


Today has been a day of progress for Jack and the recovery schedule. He had his bandages removed, the drain line removed, the incision area cleaned and new dressings applied. Jack is mostly off of the narcotic drugs. He is getting a little shaky and we might need to check into rehab for his recent drug abuse problem, but I think he will be fine very soon. :)

I think the pain is subsiding for Jack as the hours pass. His fussy time is greatly reduced and the smiles continued all day.

As you can see the incision was large and the drain line hole was larger than expected but the new bandages are minimal and it looks like the home wound care will be pretty straight forward.

I think we have 1 more hurdle to jump before we can get the "all clear" bell. It is a bit of a dirty subject, but he needs to....well....poop. Jack needs to let it go and show that his bowels are working properly and then we can go home.

Other than the dirty diaper we still need to get fitted for a helmet. That will happen tomorrow around mid-morning. We will have a helmet decorating party at our house next week if you would like to join us!

I will update/post in the morning.

~Cory & Stefanie

It's a good day.

Today has started very well!!! Stefanie and I were able to get a little more sleep last night and as you can see Jack is awake and alert with fingers in his mouth along with tubing, IV line or anything else he can reach. Drug induced or not, we got a smile or two this morning which made us all very happy!

The surgeon's Nurse Practitioner (NP) stopped by and mentioned that they will come back around 2:30pm to change his wound dressings and possibly remove the drain line depending on the collected amount. You can see the collection bulb and drain line in both pictures. We are optimistic about his progress from this point forward. However, even with the positive outlook for today we would prefer to remain at CM to take advantage of the care givers here rather than being incapable of high quality care at home. Not that Stefanie and I are incapable, but the CM staff have a little more field experience.

The sleeping arrangements have left a little to be desired. I thought we were moving into the lap of luxury with a large rocker recliner that can lay fairly flat and the 6' window seat that doubles as a bed. Maybe my perception of our new furnishings was a little tainted and the expectations were a tad high. We are still in a hospital after all. I will not lie, I miss my Tempurpedic bed sorely!! Pardon the pun.

Sometime late this afternoon, the fashion icon will be measured and fitted for his ultra cool helmet. I can't wait to adhere the endless possibilities of stickers and accessories to his new appendage. Any ideas on how to decorate Jack's helmet? The best idea wins!!

Jack and Stefanie just fell asleep and the mood is tranquil and peaceful for now. I will update later today when we have more news.

Cory & Stefaine

PS - This moment in our lives has been very emotional for Stefanie, myself and our family and this blog has given me an outlet for my emotions. Please accept my apology for the tears that I have caused with my writing. It was obviously not my intent. Stefanie, Jack and I are continuously overwhelmed with the gracious support given to us by those of you reading our updates. Know that your support, positive thoughts and prayers give us the extra ounce of energy and strength we need to manage our emotions and feelings. Our needs won't end when we leave this wonderful place as the home care will definitely prove to be very difficult and challenging. As Bartel's and James once said, "Thank you for your support." (That's back when wine coolers were, well, cool.

Wednesday, January 13, 2010

The home stretch.

Today has been a good day. Jack's labs came back with all normal levels, he will open both eyes and give you a look like, "i feel funny. what is this stuff on my head? where am i?". He had the IV fluids removed a few hours ago and the wound dressings will be coming off tomorrow. He is no longer hooked to any lines or monitors. We are starting to see Jack stay awake and alert for longer periods in between the medication induced sleep sessions. Stefanie and I are anxious, curious and nervous all at the same time to see how his beautiful little scalp looks. After the wound dressings are removed the doctor will remove the drain line from Jack's scalp and then he will be fitted for his new................helmet.

The latest style in London and Paris include the uber fashionable helmet! No late winter/early spring wardrobe would be complete without a beautiful helmet. He will wear his new accessory approximately 3-4 months for 20-24 hours a day. My dreams of a football player son have finally come true. And it only took 8.5 months!!! I am a very proud father!

I need to thank all who have come by to visit, and a big thank you to everyone who has given a thought to Jack, Stefanie and I as we continue trudging along the recovery path. Ok, here is the hippie in me, I love all of the positive vibes that came from everyone thinking about us. You are all wonderful people!!

Cory & Stefanie

Tuesday, January 12, 2010


Ahhh. Stefanie is asleep. Jack is finally resting peacefully due to the fact that he has been given a lot of really good drugs!! (lucky little bugger!) I want to thank our good friend, Christy Claeys, for her ability to make Stefanie and I feel comfortable in a difficult place. She is a rockstar and we appreciate her very much! Thank you Christy!
Jack was a little grumpy yesterday until he received his meds. He would cry for 2 minutes and then would calm down for 30 seconds. Cry for 2 mins and calm down for 30 seconds. He repeated this process for hours. Around 6pm last evening he was able to take an additional round of meds that helped with the pain, nausea, anxiety and swelling as well as IV fluids and a 3rd blood transfusion. All of that seemed to help all of us to get some much needed rest.
Yesterday was an amazing day in the PICU. For the time I have been here I feel I have seen a lot of things that have brought a tear to my eye and made me reflect on my own life.
~A quilt in the hallway that has a picture of a newborn with a caption that says, "A moment in our life. A lifetime in our hearts. 4/16/03 - 4/17/03". - 1 day? That is all this world got to see of this beautiful baby? 1 day? It isn't right.
~A small girl who could not contain her innocent emotions being consoled by an older woman and being told, "everything will be ok, it will be alright." as she continued to sob uncontrollably.
~The families that I regularly trade glances with, knowing that they were here before me and they will be here after I leave. The look in their eyes, the unheard conversations in the hallway, their patience and persistence have forever burned an image into my mind.
~The child in the next room, screaming in agony for hours now as 2-4 doctors and nurses tend to him at all times. My heart goes out to him and his family.
~The dedication of my wife as she has rarely left our son's side. Loving and comforting him as often as humanly possible. I am envious of her strength.
~Seeing the grief torn families of passed souls. Unfathomable emotions.

This experience has taught me a lot about my family, my life, the love a parent has for a child and unfortunately there is always someone somewhere is dealing with a more difficult and challenging situation than ours.

I had to get some of this off my chest before I exploded, so thanks for reading.

We are now in 2Henson Room 2411 or 2611. Either way when you enter the Hospital you will pass through security and find the Castle Elevators, then travel up to the 2nd floor, exit to your right (I know it says Burn Unit, but we are not in that area, just the same tower), push the little black button on the wall and the nurses will open the door, you must check in with the nurses and they will direct you to our room. Please feel free to visit and remember your ID and Children's Mercy says no kids 18 and under.

Cory & Stefanie

The day after.

For Stefanie Monday night came and went with a lot of crying, sleeping, medications, lab work ups, sitting in a chair holding our son as her legs, feet and hips went numb along with tears of exhaustion. I think she won an award from the nurses. For me, it was a little bit of sleep in the on-site Ronald McDonald House sleep rooms on a sleep number bed that was set way too high.

Jack is in the painful stages of recovery in the PICU at Children's Mercy Hospital in KC, MO. He is able to sleep for 5-15 minutes at a time and then he wakes up in pain only to have Stefanie or I try to soothe him back to sleep. His helpless cry is extremely disheartening to anyone who hears it. It's sound demands your immediate attention as it tugs at you primal instinct to care and protect your young.

Anyway, today is a big day for Jack. He should be released from the PICU late today and the swelling should be at it's worst by day's end as well. Hopefully tomorrow will tone down the pain, reduce the swelling, continue/jump start the bowels and get us on the road to recovery.

When you look at the picture, think "I wonder what the other guy looks like!"

Cory & Stefanie

Monday, January 11, 2010

Time for rest & recovery.

Somewhere around 3:30 my mom, dad, brother, Stefanie and I made our way to "Reunion Avenue" to see Jack for the first time since the gut wrenching moment of handing him off to the nurse.  It seems like that was days ago at this point.

He looked a lot better than we expected or could have imagined.  Some swelling, tubes and some bandages were his battle scars from the 7 hour long ordeal (4 1/2 hours actual surgery).  Stefanie and I were relieved to see our baby boy once again!

Currently, we are are resting in the PICU, starting to wind down from the day and gear up for a long and mostly sleepless night.  The couple of times he has woken up pretty unhappy, he has been easily comforted with a bottle.  They are giving him several medications - antibiotics, steroid, anti-nausea, and pain.  He still has 2 iv lines, the heart monitors, catheter, blood oxygen monitors and the drain from his incision site.

FYI, Children's Mercy is not allowing any visitors under the age of 18 into the hospital.  So, please remember if you are planning to visit.

We are headed to grab some food and we will be back later with a nightcap.

Thanks again for the prayers and support!  We can feel the love!

Cory & Stefanie

Surgery Day

Here is a rundown of our day so far.

6:00 am - Cory, Stefanie & Jack arrive at Children's Mercy Hospital to begin the pre-operative process. We meet with the anesthesiologist and the surgeon and they take Jack's vitals and weight. Everything looks good and surgery will happen as scheduled.

7:30 am - Cory and Stefanie give Jack hugs and kisses as the surgical nurse takes him to the operating room. The hardest moment of our lives! We are directed to the surgery waiting room where our family will sit with us for the day.

8:40 am - Nurse calls with update. He did well with the anesthesia and "went to sleep with a smile on his face". The first incision was made at 8:30 am.

10:00 am - Call from nurse. He is doing great and has received his first unit of blood. No issues.

11:30 am - Update from nurse. He is still doing very well and the surgeon is working away. They started a second unit of blood. It could be 1 or 2 more hours before surgery is complete.

12:15 pm - Surgeon met with us to discuss Jack's progress. Turns out he had 4 sutures that had closed prematurely (instead of the 2 we had origionally thought) and there was a lot of pressure on his brain. The surgeon was able to expand and re-shape the bones in his skull using existing bone, bone grafts, screws, plates, and stitches which will dissolve within the next month. Unfortunately because there was more than one suture that had closed, the chance of a 2nd surgery in a few years is still a possibility. We won't even think of that now, we are just so happy that Jack pulled through today's surgery.

12:55 pm - Jack arrives in the recovery room. He will awaken from anesthesia and will wait for results of blood work. We should be able to see him wihin the next hour or so.

So now we are up to date and it is 2:12pm and we are in a holding pattern until further instructions from the staff.

Update soon!

Hard to imagine

Cory wrote this last Friday night.

Stefanie and I are trying to stay calm as Monday morning approaches like we were walking the plank and rapidly nearing the end. I don't think I have fully wrapped my mind around the reality of the situation and I am sure that it will hit me like a ton of bricks as I hand over my child to a stranger. I know I have been a parent for a short time, but everyday teaches me something new about how my parents must have felt when I was a kid and scraped my knee, needed stitches or fell off my bike. I am watching Stefanie feed Jack as I write this and finding it more and more difficult to stay focused on the "blog update" as I want to squeeze our little guy tightly. These tender moments will return in time as Jack recovers and as Stefanie and I try to get back into our crazy routine of feedings, diapers, tummy time, work and all the things that make up our family life.

We will arrive at Children's Mercy on Monday Jan. 11, 2009 at 6:00am to check-in. Sometime around 7:30am is when we will say our prayers and hand Jack to the nurses and surgeon. We fully expect the surgery to last 6-8 hours, which will include pre-op, actual surgery and recovery care. We will be updated by a surgery nurse every 90 minutes or so throughout the surgery. After surgery Jack will spend some time in the PICU where he will receive 1 on 1 patient care. Sometime on Tuesday Jack will be released from the PICU to his room where we will stay for the remainder of our time at Children's Mercy. We will be sleeping in his room Tuesday, Wednesday and Thursday night.

Please feel free to visit if you can. Visiting Hours are 9am - 9pm and you MUST have ID to check in. We will update this site soon.

We appreciate the love that our families have shared with us and we will need your continued support and prayers.

Love ~ Cory & Stefanie

Hello everyone & welcome to our blog!

Jack was born April 23, 2009 with 10 fingers, 10 toes and a clean bill of health. We, like all new parents, were beaming with delight and joy that our son had decided to join us in the outside world!

As time went on and doctor appointments came and went, we silently noticed our kiddo still had the misshapen head of when he was born. We, not knowing any better, thought it was normal and the "bump" would settle down on it's own in due time. Stefanie, Jack and I showed up at our 4 month appointment happy as can be, and left dumbfounded. Our pediatrician expressed concern with the shape of Jack's head and he sent us for a head x-ray, followed by a CT scan to check for Craniosynostosis (a congenital defect that causes one or more sutures on a baby's head to close earlier than normal. Sutures are connections that separate each individual skull bones. The early closing of a suture leads to an abnormally shaped head.). I tried to focus on what the doctor was telling us, but all I could think about was the rather large word that our doctor had effortlessly enunciated, let alone worrying about what the heck that meant for Jack. So the appointments were made with Children's Mercy Hospital.

Jack had his 1st head x-ray and CT scan at 4 and 1/2 months old. I think that may be a record in our family. Way to go son!! The plastic surgeon, Dr. Singhal, reviewed the results and informed us that Jack did indeed have Craniosynostosis, a complete closure of the Sagittal suture and partial closure of the Lambdoid suture.

Dr. Singhal recommended that we have the surgery at approx. 8-9 months. At this age, the kiddos handle the surgery better, recovery time is faster, and the amount of blood loss is lower resulting in less transfusions. The surgery will open the closed sutures to allow for future growth and development and correct the shape of his head.

We had a few pre-op appointments along the way, but nothing serious and Jack has been all smiles.

More updates to follow...

Cory & Stefanie