Saturday, October 9, 2010
We were surprised when she was born with all the issues they found. I was 37yo when I had her and the whole pregnancy just knew there was going to be something wrong with the baby (didn't know the sex back then). I didn't tell anyone I felt that way, I just thought it was my age and you hear that the older you are, the greater chance for a child to have down syndrome.
At 21 weeks they did an ultrasound to check the due date. Because she was small, they said I was 17 weeks. I knew I was right, when it's your 3rd pregnancy you know when you are pg! LOL they tried to get a profile of her but she kept turning her face to follow the probe thing. If they had gotten a profile, we would have seen a very large obvious cleft lip. But we never saw that. My uterus measured a normal size so they never did another US. I had also refused all testing and they had me sign papers saying I refused it. About two weeks before she was born the dr asked how big our older girls were, I told him 6 lb 13 oz and 6 lb 10 oz. He said I think we are looking at 6 1/2 - 7 lbs here! He was totally shocked when she was born and was so small! She was 3lb 14oz and 16 1/2" long! Immediately they saw the small size, very large cleft lip and palate and realized there was a problem. Interestingly her APGAR score was a 9! Her lip was very ugly but she was beautiful. Becky was in the delivery room and her first words were "Mom, she is beautiful!"
they tried feeding her and she aspirated and got her first of many aspiration pneumonia's then. They came in and told me she had pneumonia and would have to go up to the NICU. When they said the helicopter would be there soon I was shocked, I didn't know they didn't have a NICU there and up to the NICU meant going to Baltimore MD! I thought they meant upstairs! I later found out that most parents didn't understand that either!
She was in the NICU for 3 weeks. While there her bloodwork showed she had a deletion on her first chromosome. She was missing bands 21 -25 on the long arm. (this summer 2010, we redid her blood work for her chromosomes and found that her deletion is actually 1q 24-31! That is a very large deletion that controls a lot of things. Testing had changed a lot in 15 years!
She was sent home from the NICU with an NG tube for feedings and an apnea monitor. I don't think they really expected her to live long and she didn't get her gtube surgery until she was 3 months old! She was still too small to have her cleft lip or palate surgery. She had a good suck, she loved her pacifier but looking back her problem was she couldn't swallow. they did a PH probe to test her for reflux and found that she had over 300 episodes in 24 hours. It was silent reflux, she rarely spit up but was constantly crying and miserable.
So at 3months, she got a nissen and gtube. She was a different baby then, hardly every crying. She didn't sleep much and drove her sisters crazy at night! Our room is down the hall so we didn't hear her but they were right across from her!
When she was around 11 months old she had her first status seizure. That started her with many aspirations and seizures that ended up with her flying to Baltimore to the hospital. At that time she was learning to sit alone and could do a few things like roll around and roll over. We also found out that she is profoundly deaf and has cortical vision (she is considered to be deaf/blind) We don't know what she sees or hears.
She had a lot of trouble breathing at times so it was suggested that she get a tracheostomy when she was 3 1/2 yo. I was a little shocked but did some research and decided it was the best thing for her then. She did well but was in the rehab hospital for 5 weeks waiting for nursing to be approved! Finally she qualified for a Medical Assistance waiver and was allowed to go home. That was in Jan 99.
She still had constant aspirations so in 2001 she had a surgery to stop aspritations. It was called a laryngotracheal separation and completely cut off her upper airway from her bottom airway (lungs). This surgery is permanent and means she will always have a trach. She can't breathe through her mouth and nose anymore. She also can't make sounds since no air goes past her vocal chords. That is why she is so quiet! :)
She hasn't had pneumonia since then! She still has a lot of respiratory problems and gets a lot of neb treatments around the clock. It was found that because of all the aspirations she acquired trachomalacia and bronchomalacia so she was put on CPAP. She uses a ventilator for the CPAP. She has nurses her with her at night for 12 hours. Two days a week she gets an extra 4 hours for me to go to the dr etc. She doesn't know not to pull on her trach, etc and if she pulls her trach out, she can't breathe, so she has to have "awake care" 24/7!
Hannah's seizures have gotten worse over the years and she has lost a lot of her "abilities" She is developmentally about 2 -3 months in age. She can't do anything for herself at all.
We always knew she had a neurogenic bladder but last year found that her brain doesn't tell her spinchter to open so we have to straight cath her 4 times a day for residuals. Sometimes we can get as much as 500cc's from her tiny body! At 15yo she is weighs 38lbs and is 40" tall. She wears a size 5 infant shoe and can wear slightly larger than newborn hats.
We had been watching her scoliosis for the last few years. In two years her curve went from 31 degrees to 75 degrees so in Nov 10 she is having spinal fusion surgery. We are not looking forward to that at all, but know it is necessary.
I know I have left out a lot. She has had multiple surgerys for her cleft lip and palate but at this time they are still not completely repaired, it's all cosmetic and we have always said we would only do what is the best for her to keep her comfortable.
Prayer is the one thing that has gotten us through all this. Hannah would not be where she is without it. I thank the Lord for the opportunity to be her Mom.