General Help For Parents of Hayden Castle
$5 Raised
0% of $10k goal
1 contributor
3 Years running
Hayden Lee Castle was born on January 1st 2013.. To Nakita and Larry Castle.. Since day one there have been obstacles this little angel has had to over come and to this day he is still showing the world what a little fighter he is..
This amazing ...
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Hayden Lee Castle was born on January 1st 2013.. To Nakita and Larry Castle.. Since day one there have been obstacles this little angel has had to over come and to this day he is still showing the world what a little fighter he is..
This amazing little guy was welcomed on 1-1-13 after a very difficult pregnancy and an emergency delivery.I was diagnosed as pre-ecamptic, had graves disease as well as excess fluid. Through it all though we were unaware that Hayden was effected.
As soon as he was born the doctors noticed that he had a very small chin and trouble breathing. They told us he had true knott in his umbilical with it wrapped around his neck. After a couple days we noticed that he was not swallowing his own secretions and had to be suctioned frequently.
A head ultrasound was performed to see what they could find. What they told us was devastating to say the least. They found evidence of a brain bleed and were concerned about several other factors including his weak muscle tone in his arms but high tone in his legs. We were then transfered to UK childrens hospital for more extensive testing.
Upon arrival at UK they did another ulresound and found that the bleed was there but it was also healing.We were so happy! But this was just the first part of this journey....
When he was 3 weeks old he underwent bilateral mandibular distraction. Meaning they cut his jaw in half on both sides and placed pins in it. Over 10 days the turned the pins and made his jaw grow 100%. They were hoping that this would help solve the swallowing issue. While it did help open his airway it did not help his swallowing ability at all. At this time is when Hayden was diagnosed with Pierre Robin Sequence.
While all of this was going on we noticed that Hayden would reflux severly. It was so bad he would drop is oxygen and heart rate to dangerous levels because his airway would get blocked.
It was horrible watching him go through all of this, I would have given anything to take it away...but he is an amazing little fighter.
Hayden spent the the first month and a half of his life in the NICU. We traveled back and forth, but it was very difficult as we had two little girls at home. It felt as if we were being torn in two...and sometimes still does.
On Feb. 17th Hayden was released from the NICU with a feeding pump, heart monitor and a suction machine.
We had high hopes and were extremely happy! FINALLY our little guy was going to get to meet his sisters and the rest of his family for the first time.
However, it was very short lived because within 6 hours of being home...he was taken by ambulance back to the hospital. He was refluxing so badly that his oxygen level kept dropping and he turned a grey color :( I can honestly say it was one of the scariest things of my life. I thought in that moment that we were going to loose him....that I was going to half to say goodbye. Praise God because he was watching over him.
He was admitted to the PICU were they placed his feeding tube lower down into his small intestines to stop the reflux. This seemed to help and a week later we were sent back home.
It was the best 2 weeks we have had since hayden has been born! Seeing him with his sisters, watching him smile as they danced around the room, just getting to love on him whenever we wanted made us feel complete.Although it was challenging to keep his airway constantly clear we were all together and that is what matters.
On May 5th we were scheduled to have his hardware removed from his jaw and have just an overnight stay. The removal went good but on the morning we were supposed to go home Hayden began refluxing again. They done a xray to check the placement of his feeding tube and consequently found that he had a "sick" bowel. Had it not been found it could have made him loose part of his bowel and required emergency surgery. Again, I know God was there with him , no doubt in my mind.
We have been at UK ever since then. While his bowel is now healed up they want him to go ahead a get a g-tube placed on the 20th of March as well as the nissen surgery to help him with the reflux issue.
Along the way Hayden has been diagnosed with Cerebral Palsy but we were told we wont know the extent of it until he is older. No matter what though....we will encourage him to do the absolute best he can. The diagnosis does not define him.
I wanted to say Thank you to the many family and freinds who have been there through this entire process. We love and appreciate u all very much.
Please continue to pray for our little guy as he has a long journey ahead, but I know he will do amazing because he truely is a amazing little man.
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