Saturday, October 2, 2010

The Beginning

I guess I should start from the beginning, over eight years ago.  Everything was going fine with my first pregnancy until I hit 31 weeks and my water broke.  It was a Saturday, and I was whisked away in an ambulance (my first and only ambulance ride) to another hospital 2 hours away from where we live.  That was the nearest hospital with a NICU.  I was put on bed rest there and was expected to stay there on bed rest for the next six weeks.  I only lasted a few days though.  They discovered I also had placenta previa, and by Monday evening I started bleeding out (I think they said the placenta had started to rupture).  They monitored me through the night very closely, and the baby's heart rate kept dropping, so they did an emergency c-section Tuesday evening to get him out.  He was very tiny, only 3 lbs, and was born on March 19th 2002 (he was due May 19th).  We named him Noah Arron.  It was not at all how I expected it to go.  It was so scary going through a c-section and having a premature baby as well.  Right after he was born they knew something was wrong with his leg.  At first they thought maybe his leg had broken in utero, and then had set on it's own but in a weird way.  It was later discovered that he had fibular hemimelia.  He had a curve in the tibia bone and a slight curve in the femur also.  He was also missing most of his fibula bone.  As if all that we had been through was not frightening enough we now had this to face.  Something we knew nothing about and had never even heard of.  We started researching it on the internet which is always a bad idea because everyone is different and most of the things we read about on the internet were severe cases, so it of course scared us even more.  Noah spent 6 weeks in the NICU after he was born and went through all kinds of testing while he was there.  He had MRI's, CAT scans, a spinal tap, and other tests done because they continued to think there were more things wrong with him.  There wasn't, other than his leg there was nothing wrong with him.  Thank the Lord!  It was definitely a difficult time in our lives.  After finally coming home from the hospital he then had to go right back again for hernia surgery.  That was only the beginning of all the surgeries he had and still has to face.  At about 6 months old he was fitted with his first AFO (Ankle-Foot Orthosis) for his leg.  From then on I continually had people tell me he had lost a shoe when they saw the brace on one leg.  He was about 17 months old when he finally started walking.  Being premature had put him behind developmentally so he went through physical therapy as a baby as well.  I can't remember when he started that, but I think it was somewhere between 3 and 6 months, and I believe he continued with it until he was around a year old.  He saw an orthopedic specialist every few months at the hospital he was born at and continues to do so.  Many children with this are often missing toes and a lot of times the only course of action is to amputate.  Noah had all of his toes and a very optimistic doctor that thought he could help Noah, so limb lengthening was what was discussed from the very beginning for him.  The problems with his leg would cause his right leg to be shorter than the left, and as he grew so would the length discrepancy.  For the first 5 years of his life his appointments with the specialist were just for x-rays, and for him to keep an eye on how Noah's leg was growing.  At 5 years of age he had his first surgery on his leg.   He is now 8 and a half years old and has had 7 surgeries on his leg.  In 2008 he had his first limb lengthening surgery.  The one we had heard about for years from his specialist and were dreading.  I remember praying all the time when he was first born that his leg would just grow normally and keep up with the other leg, and that the curve in the bones would grow out, so that he wouldn't have to go through all of this especially the limb lengthening.  It was very difficult, but we all got through it, and Noah did so much better than anyone expected.

My next posts on here will be about each one of Noah's surgeries.  They will be copied though from my other blog about our family so each post will be from the time when each surgery actually occurred.  So keep that in mind when reading them.  They are journal entries from the past.  I'll try to remember to put the date from when I actually made the post so that it isn't too confusing.

 Here are a few pictures of Noah's early years.
3 days old under the blue light in the NICU.
Finally getting to hold him for the first time - 5 days old.  Look how tiny he looks in my arms.
Getting his feeding through his feeding tube - 6 days old.
Laying in his little bed in the NICU - 13 days old.
Almost a month old.
Finally home at almost 2 months old.  Still on oxygen and a heart rate monitor.
You can see the difference in his legs pretty good in this picture - 4 months old.
A little glimpse of his AFO on his leg - the day after his 1st birthday.
20 months
Walking around the pumpkin patch with his AFO on - 2 and a half years old.
I'm not sure about his age here because the date is messed up on the picture, but I think he's right around 3.  You can see the lift that he started wearing on his shoe here.  The size of the lift kept increasing over the years each time he needed new shoes.  It got up to about a 2 and a half inch lift before his limb lengthening.

Wednesday, September 29, 2010

Why I Started This Blog

I already have a blog that I started almost 4 years ago.  It is our family blog where I write all about everything that is going on with us.  I decided to start this new blog all about Noah to help other parents who have children with fibular hemimelia like Noah.  It has been a very difficult road, and I remember how scary and overwhelming it was when we first found out.  So I thought that maybe starting a blog that's just about what Noah has been through would help other parents just starting out on this road.  I know I have a few people occasionally that visit my other blog from a fibular hemimelia discussion board, and I was even contacted recently by one mom who recently had a baby born with this, and her son goes to the same hospital mine does.  Since my other blog isn't just about Noah and fibular hemimelia it's a little harder to find the information you might be looking for to read about what Noah has been through so I figured starting this blog might make it easier.