Haydens_Mommy1122
09-23-2008, 01:20 PM
Hi there!
I'd like to share the story of my sons journey of what hes been through in his short life so far.
My son Hayden was born on 11-22-07 (Thanksgiving night) after 48 hours of induced labor. This was a very hard pregnancy with many problems. I had high blood pressure, low amniotic fluid, and borderline diabetes.
Hayden was 10 lbs 3 oz (no c-section) 22 inches long when he was born. He of course, looked a little rough for being a big boy and being stuck in the birth canal for quite some time. So when his father mentioned to me, the next day, that his forhead didn't look quite normal, I just mentioned that its probably just because it was a tough delivery. But to be on the safe side we mentioned it to his pediatrician, and she said that they would do a cat scan just to be on the safe side and we would find out the results the following day.
The following day came and she told us that his left suture had closed before he was born and that its called craniosynostosis. We were shocked. We, like everyone is, was like cranio what? She explained what it is and that she would refer us to the ns @ Childrens Memorial Hospital. When she left the room i just broke down. One of the worst things is to find out your newborn baby has medical problems.
The following week we made our trip to Chicago and met with the neurosurgeon, Dr Alden. He went over the options and wanted to do the endoscopic surgery the following week. Everything was happening too fast that i didnt even have time to think. I was still trying to heal from just having a baby.
Dec 13th we went in, and had blood work done. Dec 14th was the day of the surgery. Even though it was endoscopic, our little 3 week old baby was having surgery. Everything went well and we were actually able to come home the following day. We were told that possibly later down the road he may need another surgery, but at that point in time we werent thinking about that.
In Jan, Hayden got fitted for the doc band. We went to the doc band clinic once a week. The clinic is about 1 hr 1/2 away from our home. He wore his first doc band until April. The NS suggested that he wear another one just to make sure his head shapens up some more. He started wearing the 2nd one in July. This time we had bi weekly appointments which was much easier for us.
In the meantime, we had an appt with the NS for a follow up in Aug, and he suggested that we make an appt with the PS for possible surgery on the left side of his skull. We had another cat scan done and found out that Haydens suture closed again and that was a reason why his left side was not forming like it should be with the doc band.
We met with the PS a few weeks ago and we have decided to go through with the 2nd surgery and I believe its CVR/FOA. Its so scary when its your own child. You read all these stories and see all these wonderful little babies that have gone through the same surgery, but when its your own, no words can explain how you feel. Which I know, the parents that have gone through this and is going through this know exactly what I mean.
So here was a short version of Haydens story so far. I will be posting more as we know more as well.
Oh and I forgot to mention, yesterday Hayden graduated from his 2nd doc band :elmoHe no longer has to wear it. We are so excited about that, and the doc band did just a great job!! Thanks for taking your time to read his story. I will update as soon as I know more.
I'd like to share the story of my sons journey of what hes been through in his short life so far.
My son Hayden was born on 11-22-07 (Thanksgiving night) after 48 hours of induced labor. This was a very hard pregnancy with many problems. I had high blood pressure, low amniotic fluid, and borderline diabetes.
Hayden was 10 lbs 3 oz (no c-section) 22 inches long when he was born. He of course, looked a little rough for being a big boy and being stuck in the birth canal for quite some time. So when his father mentioned to me, the next day, that his forhead didn't look quite normal, I just mentioned that its probably just because it was a tough delivery. But to be on the safe side we mentioned it to his pediatrician, and she said that they would do a cat scan just to be on the safe side and we would find out the results the following day.
The following day came and she told us that his left suture had closed before he was born and that its called craniosynostosis. We were shocked. We, like everyone is, was like cranio what? She explained what it is and that she would refer us to the ns @ Childrens Memorial Hospital. When she left the room i just broke down. One of the worst things is to find out your newborn baby has medical problems.
The following week we made our trip to Chicago and met with the neurosurgeon, Dr Alden. He went over the options and wanted to do the endoscopic surgery the following week. Everything was happening too fast that i didnt even have time to think. I was still trying to heal from just having a baby.
Dec 13th we went in, and had blood work done. Dec 14th was the day of the surgery. Even though it was endoscopic, our little 3 week old baby was having surgery. Everything went well and we were actually able to come home the following day. We were told that possibly later down the road he may need another surgery, but at that point in time we werent thinking about that.
In Jan, Hayden got fitted for the doc band. We went to the doc band clinic once a week. The clinic is about 1 hr 1/2 away from our home. He wore his first doc band until April. The NS suggested that he wear another one just to make sure his head shapens up some more. He started wearing the 2nd one in July. This time we had bi weekly appointments which was much easier for us.
In the meantime, we had an appt with the NS for a follow up in Aug, and he suggested that we make an appt with the PS for possible surgery on the left side of his skull. We had another cat scan done and found out that Haydens suture closed again and that was a reason why his left side was not forming like it should be with the doc band.
We met with the PS a few weeks ago and we have decided to go through with the 2nd surgery and I believe its CVR/FOA. Its so scary when its your own child. You read all these stories and see all these wonderful little babies that have gone through the same surgery, but when its your own, no words can explain how you feel. Which I know, the parents that have gone through this and is going through this know exactly what I mean.
So here was a short version of Haydens story so far. I will be posting more as we know more as well.
Oh and I forgot to mention, yesterday Hayden graduated from his 2nd doc band :elmoHe no longer has to wear it. We are so excited about that, and the doc band did just a great job!! Thanks for taking your time to read his story. I will update as soon as I know more.