Thursday, March 18, 2010

Happy "lucky #7" Birthday to our little Jack-pot!!!

It’s been so long since I’ve updated! Take that as a good sign. Jack’s recovery is going well….he’s doing aqua PT, clinic PT, and massage therapy once a week. All his therapists are pleased with his progress and notice improvement weekly. He’s also doing swim lessons and horseback riding lessons once a week….these are not technically therapy, but he gets SO much therapeutic benefits from them and they are FUN. School is going great and his recent accomplishment was riding a 2-wheel bike again! So that’s our update….good, good, good things!

I could leave it at that, but tomorrow is a BIG day…Jack’s 7th birthday!!! My sister asked me yesterday if I “relive” the day my kids were born on their birthdays like she does. I was happy to hear that I’m not the only sentimental mom out there that does this, but I felt my tears begin to well up as I told her that reliving Jack’s birthday is somewhat like reliving a bad dream. So, his birthday is always a little hard for me…bittersweet, if you will. And since this blog is all about HIM, I thought I’d go waaaaay back in time to when this all began.

I was 20 weeks pregnant with Jack and at a routine ultrasound. The doctor came into the room after the ultrasound and told us there were some concerns with what they saw, a spinal and a kidney abnormality. They couldn’t give us details because it wasn’t clear what was wrong, it was just clear that all wasn’t right. They told us to come back in 4 weeks for another look. Four weeks later, they confirmed what they had told us prior, something indeed was wrong, but there weren’t enough clues to give us any concrete answers. They wanted us back in 4 weeks. This next time we saw a high risk specialist, he did the ultrasound himself. He told us that Jack had congenital scoliosis, a rare spinal defect in which the vertebrae do not form correctly. Normally, vertebrae are like cube-shaped blocks stacked on top of one another to form a straight tower. Some of Jack’s vertebrae were shaped correctly, but some were triangular-shaped, forming a wedge in his spinal tower and causing a curve. Other vertebrae were basically vertebral-fragments. Our little baby’s spine was sort of an S-shaped, curving one way and then curving back another way. The doctor told us we would have to see a pediatric orthopedic surgeon when Jack was born. He gave us the name of a doctor he recommended we consult with when the baby was born. Rather than waiting, we called that day. We talked to the surgeon’s assistant and she told us to come in at 7 am the next morning, he would see us before his clinic started. We went and we met Dr. Sawyer. He explained to us in detail what congenital scoliosis was and assured us he could help us and then he gave us the best gift any doctor could have ever given us….he told us, “If this were my baby and my pregnancy, I’d read a little about this to prepare myself, but then I’d relax and enjoy the pregnancy. Everything is going to be just fine.” So, we did just that.

I delivered Jack by c-section on March, 19th 2003. I immediately knew something was wrong, there was a very awkward moment when my doctor said, “your baby is almost here” and a second later I heard, “get the nursery on the phone now.” A nurse told me something is wrong with your baby, and when I asked what she couldn’t tell me. They gave me a quick peek at his face and took him away. I was taken to recovery and waited for hours for an update. Jon went with Jack and would come by to give me updates. All he could say is something is obviously wrong with his leg, and he has a lot of hair.

Here he is! No, it's not a bad camera angle...his leg was really bent like that. He had no flexion in his essentially his leg was stuck just like that. Unfortunately, we didn't take any pictures of him where he wasn't covered with a blanket, so this is the ONLY "before" picture we have.

I was eventually taken to a room, and that evening Jack was brought to me. At this point we still had no answers as to what was wrong with him, but the nursery determined he was stable enough to be with us. I remembered being how shocked at how beautiful he was (he really did have a lot of hair!). I unswaddled him briefly and took a quick peek at his foot and leg. I was shocked and I remember thinking “how can someone live life with a leg like this?” And then I bundled him back up and went numb.

Here is me meeting Jack for the first time. Don't mind my red the midst of all of this, I had an allergic reaction to the morphine! I can laugh about that now too.....

He really did have a lot of hair!!!

The next few days were a blur, although I can remember exactly what each doctor said to me. First we saw an orthopedic surgeon (it wasn’t Dr. Sawyer, he was on vacation). The surgeon told us he’d seen babies like this before and the spine almost always gets worse as the baby grows and most likely, at 6 months of age he’d fuse Jack’s spine from top to bottom…..meaning he’d live the rest of his life with the trunk height and thoracic cavity of a 6 year old. I couldn’t even wrap my mind around that so I pushed that idea so far back into my head that it never entered my thoughts again. Jack also was diagnosed with a club foot, and congenital hip dysplasia (his leg bone wasn’t in his hip socket…on either side). We were told treatment for both of those would start in a few days and involve casting and bracing. Next was a cardiologist, they had found that Jack has a heart defect called a VSD….basically a hole in the walls of his heart between the left and right ventricle. She told us his body had started healing the hole before he was born and it was small enough that he was stable with no intervention needed at that time. Had his body not have done that initial healing, he would have been rushed to surgery right away. Then came the genetics team…I remember watching them as they measured his ears, the distance between his eyes, his nipples. I remember feeling like he was just one big medical anomaly. They took some blood to do some genetic testing, and we’d have to wait weeks for the results. We found out he only had one kidney. Rather than having 2 small sized kidneys, he had one large one. Lastly, I remember our pediatrician coming in and breaking the toughest news we had heard….Jack’s head was measuring too big, they were concerned that there was a problem with this brain. They did a brain ultrasound and didn’t find anything abnormal, but they wanted to do an MRI. At this point, we couldn’t take it anymore. Jack was stable enough to go home, we lived across the street from the hospital. We talked our pediatrician into letting us go home and scheduling the MRI in a few weeks. So we took him home….after hearing words like severe cognitive delays, heart failure, may never walk, casting and bracing, spinal fusion….

Being a new parent is tough. Jon and I did the best we could, but our hearts were broken. We loved Jack in a very guarded way, but the different outcomes we had been given by all the doctors were so overwhelming. The first few weeks were a blur of appointments. We saw his pediatrician every few days, just so he could check up on Jack and coordinate all of our specialist’s appointments. We saw Dr. Sawyer and his assistant, Sue. As a team, they were amazing. They did the castings for Jack’s club foot; every week they would stretch his foot and leg and cast it. On the 7th day, we’d take the cast off at home (soak it in water), and then they’d re-cast it. They also did the torture device Pavlik harness fittings for the hip dysplasia. The Pavlik harness was horrible. Jack was extremely uncomfortable in it and it made for a very fussy baby at times. Through all of this, Dr. Sawyer and Sue were upbeat, reassuring, and more importantly….they treated Jack like he was a normal baby and oohed and ahhed over him at each appointment. Those appointments with them got us through the first 6 weeks.

Sadly, I have no pictures of his club foot casts or of the Pavlik harness. Such a bummer, but at the time it seemed odd to capture those difficult moments on camera. (We all know that we've overcome all of those odd feelings and will now snap away at all times...good or bad.)

When Jack was 6 weeks old, he had his first surgery to release his Achilles tendon (to correct the club foot) and a closed reduction on his hip (trying to pop the hip back into place). Because he was going to be sedated for this, his pediatrician ordered a spinal, kidney, and brain MRI to get some answers on those defects. Nothing…..and I mean NOTHING…..prepares you for seeing your 6 week old baby sedated and intubated and the agony of 12 hours of waiting. When it was over, we were told that the hip surgery did not work, but the foot surgery did. We were given pain medication and allowed to take him home. I remember holding him all night long that night, afraid that he wasn’t going to be okay. That weekend was Mother’s Day, so I put on a brave face, but inside I was dying….we had to wait until Monday to find answers. Monday morning, our pediatrician called and gave us a gift, the MRI of the brain was perfectly normal. I remember hearing Jon repeat that into the phone, picking Jack up and finally feeling that “falling in love” feeling that new mothers feel. I had been so afraid that they were going to find something horribly wrong and he wasn’t going to make it. Hearing those words was the greatest relief I had ever felt.

And things just kept getting better. Jack started smiling and rolling over. He was a great eater and loved his paci. When he was 3 months old, Dr. Sawyer told us he didn’t have to wear the Pavlik anymore, and Jack became the most content baby ever!

The cardiologist said his heart was stable, even with the defect. She gave us the warning signs of heart failure to look out for (sweating while eating, blue lips) but thought he would do great, and wanted to see us back at regular scheduled checkups. He had spinal xrays all the time (since he was growing so fast) and they showed that the growth was stable, and so we decided along with Dr. Sawyer to do NOTHING! We would monitor it closely with xrays, and Dr. Sawyer warned us that with congenital scoliosis the first 5 years are the most important. The rapid growth during that time is when problems most often come up, so we decided to hold our breaths for 5 years and xray xray xray.

And the next 7 years flew by. We had our rough times….when Jack was 6 months old, he had another hip surgery and spent 3 months in a full body cast. Learning how to manage that cast, while dealing with strangers accusing us of being child abusers, was tough. But, we made it and can shake our heads about it today. Here's a picture of Jack in the body cast from armpits to toes. The question we ALWAYS get did you do diapers? If you really want to know, call me.

When Jack was 4, we had a scary spinal xray that showed some progression of the defects. After a whirlwind of doctors appointments in Memphis, Chicago, and Boston, we discovered things were stable and nothing needed to be done. And, perhaps our toughest time yet, was the leg lengthening...which we have made it through!!!!!

We have 7 years where the good times so far outweigh the bad times, that we consider ourselves extremely fortunate.

So, if you’ve made it this far….thank you for indulging me in my reminiscing. A prouder mom you will not find. Jack has overcome every hurdle he’s encountered with dignity, strength, and one heck of a sense of humor. He meets his challenges head-on, and once he’s overcome them, he doesn’t look back. We hear all the time that Jack is an amazing kid…and he is. What’s truly amazing is when I reflect on where he started 7 years ago and look at him now….he is just a normal little boy. He has shocked all his doctors and this “un-named syndrome” or the “Just Jack syndrome" that he was born with, is really a very small part of the person he has become.

Yesterday Jack’s massage therapist asked him, “Jack, can you believe you’re going to be 7 on Friday? Can you believe another whole year has passed?” He paused, thought for a moment, and said, “It has been quite a year.”

So, happy birthday to Jack! You are the emotional rock of our family, loved to pieces by your mom and dad, adored by your sister, and the best friend to your brother . Happy “lucky #7” to our little Jack-pot!

I'll leave you with one final picture. This is my FAVORITE picture of Jack....his first steps! He was 18 months old and in typical Jack-style....he one day let go, and walked across the room. By luck, I had my camera right there and was able to capture the moment. I love that look on his face, it's the exact same look he gave me when we took his training wheels off last week.


  1. Happy Birthday Jack! And happy Mom-a-versary to you, Heidi! :) I loved reading that story! Your family has been through so much! What a success story you have!

  2. Happy Birthday, Jack! You had me in tears! You have an absolutely amazing kid, that's for sure, and you and Jon are such amazing parents. Hope that the day is amazing.

  3. Happy Birthday Jack!! What a beautiful story Heidi - I tried to hold it together, but you got me at the "finally feeling that falling in love feeling". Every birth, every kid, has their story. You told your beautifully. What a great source of strength you are for other mothers - thank you for doing this!

  4. Such an amazing story Heidi!
    Thank you for sharing it.

  5. Yep, it was that part about finally allowing yourself to fall in love that had me in floods of tears too. You are an amazing mom, and Jack is truly an incredible kid.

  6. i know i already told you this but i could just go on and on about how amazing i think YOU are. yes-jack is one awesome kid but the thing that always gets me is just what a special, unique person you are! from the day i met you i knew you were not just another ordinary mom.:) you have taught me so much in just the few short years we have known each other. and while i am sure jack has taught you a lot i cannot think of a better mom for jack to have from the very beginning of this journey. your strength and confidence and that "no-quit" attitude helped jack to be the boy that he is today! i am so thankful to know you heidi. while we are close in age you are a woman i look up to in many areas of my life. but especially in how you simply yet fiercely love your kids. i love you girl!