Holly Grace Mitcheson
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DOB-5/18/2001
Weight: 6lbs 7oz.
Height: 20 inches
Birthplace: Murray/Calloway County Hospital
On May 18 2001 God sent one of His angels done to earth to show us He is still THE ALMIGHTY ONE. There was several family members present at this glorious occasion. When Rhonda (Gran) came out to the waiting room to tell us to pray, we knew something was wrong before she said anything. She told us there was a problem with baby Holly that she was having problems breathing and that there were other physical problems as well. So we all started praying. To date there have been several family members that have come and said that on that day they had prayed that God would take her to heaven with Him, so that she would not have to suffer. Oh what a surprise He had in store for them. Through all of her suffering she has touched more lives than most ministers.
Her story starts out with drama and still today there is drama. So I call her my little drama queen. When she was born she came out dark blue. She was not getting enough oxygen. The doctors intubated and stabilized her and flew her to Kosiar Children’s Hospital in Louisville, Ky. Four hours from home.
Up on arrival, she went through a ton of tests, and was diagnosed with Escobar Syndrome (muscle contraction, bones in fixed position, webbing, low set ears, downward turn eyes, and small stature) and diaphragmatic hernia and enventration. Which means her diaphragm muscle that holds everything in place was paralyzed on the right side and herniated up in her right rib cage. A lot of her intestines were up where her right lung should have been. She only had a very small portion of the upper right lobe of her lung. Due to that she was diagnosed with chronic lung disease and treated for asthma. They tried to wean her off her vent and oxygen while in the hospital and every time her oxygen levels would drop and she would have to be put back on her vent. They decide to trach her in June of 2001. That was after doing repair surgery on her diaphragm with in the first 14 days of her life. The tracheotomy helped relieve some of her stress. She breathed easier and had less tubing taped to her face. Several people didn’t think the trach was a good idea, they felt it wouldn’t allow her to get stronger so that she could survive on her own. At the time she wasn’t getting better, so the trach was placed.
Then in July 2001, since she wasn’t able to eat on her own, they put her g-tube in. Before this they would put a feeding tube down her nose to her stomach to feed her. During this surgery they also did a Nissan Fundoplication surgery for her gastro-esophageal reflux. She started to do a lot better after getting all the permanent tubes placed.
In September 2001, they had to go back in and repair the diaphragm again. It had herniated back up in the ribs. Shortly after this surgery Holly got to come home for the first time. Of course, it was short lived; she was home a couple of days and was flown back to Kosiars. Her trach plugged and the oxygen they were using was wrong. She turned blue and was having a very hard time breathing, so Holly’s nurse at the time fought with the doctors here at home and they finally flew her out. We love that nurse!!!
Holly had a nine month stay in NICU (neonatal intensive care unit). Then she got to come home. In March 2002, Holly had her tethered cord release done. Up to that point she was unable to set on her own. The miracle that she had made it that far was enough for me, but God wasn’t done yet. In July 2002, we got the most blessed call we could ever ask for. We got the call to come and pick up our daughter. Holly’s birth mom called and told us that she needed our help. She asked us to take care of Holly, because she couldn’t do it on her own. Dean and I didn’t even have to think about it. I went into work and filled out my family leave of absence paperwork (knowing I probably wouldn’t be back) and packed our bags and went after her.
We were both nervous. We had tried to have a baby for nine years, but we never had to go through the actual talk about having a baby in our house, especially a medically fragile one. On the four hour trip we covered everything that normal parents have nine months to talk about. When we got there she was asleep in her crib. She had her feeding tube attached and hanging from a ribbon attached to her bed. Her vent was on and alarming, but we never had a second thought. The minute we laid eyes on her she was our daughter. When she woke up she just looked at me. The birth mother showed me how to take her off her vent so I could hold her. OHHHHH!!! What a feeling!!! We took right up with each other. We packed her stuff up and moved her home with us. The birth mom stayed with us for two nights to show me how to care for Holly. The birth mom is still a part of Holly’s life. When she is old enough we will explain to her how her birth mom gave us the best gift of a life time.
Since then Holly has had several surgeries: Vertical talus removal (fixed her rocker bottom feet), bilateral femur extension (help with her crouched stance so that she could learn how to walk) and scopes. Her next surgeries will be to release her webbing and contractions in her hands. It will probably take anywhere between 2-4 surgeries on each hand to get them all the way opened and operating as they should.
The best of the story is yet to come. In the last two months we have had bad news ever time we turned around. She failed every hearing test, her vocal chords were paralyzed and we were having vent problems. So Holly’s lung doctor from Louisville referred us to a specialist in Ohio to look at her ears, vocal chords, and everything to do with her air way. So last week we had our trip to Ohio. Hope your still reading, because here comes the good part. The first day we were there they looked at Holly’s vocal chords………they worked. Not paralyzed? You got it. There’s MIRACLE number one. On the third day after her scopes they did a hearing test…….She passed!! There’s MIRACLE number two. But the best news we got was on the second and third day. On the second day, a CT scan was done on Holly’s chest and the doctor told us she had TWO full size lungs. He said that the right one may not be working right but it was there. (It wasn’t there before). Then on the third day after he did his scope, he came in and said he was amazed!!!! He said we have two healthy lungs, with no scars or chronic lung disease. He said he teaches classes and he could us Holly’s scope to show his students what a normal respiratory system looks like. There’s is MIRACLE number three!!!!! I can honestly say I don’t think God is done with her yet!!!!! He is doing a little at a time so that we won’t forget were we have come from. If He made her whole all at once, would we remember down the road what He had brought us through? GOD is an AWESOME GOD!!!! WE can never thank Him enough.
