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A place to call home, where you are never alone
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A place to call home, where you are never alone
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Angel
Me and my girls Angel 13
months and Debbie 2 years. December 2004 My daughter was born on November 23, 2003, weighing in at 6 pounds 10 ounces and 18 inches long. My pregnancy was awful. I had 5 kidney infections (was hospitalized for 2) and was hospitalized once for bleeding (profusely). They said that my placenta was probably torn, but didn’t know for sure. It was also a very painful pregnancy. My back, legs, chest, and stomach hurt from 5 months of pregnancy up until birth. I had an excessive amount of amniotic fluid, double what I should’ve had. My water broke at 6 am on November 23rd, I immediately went to the hospital and was in labor with no progress (3 centimeters dilated) for 7 and a half hours. At 2 o'clock I went into the O. R. for a c-section. Angel was born at 2:32 p.m. I had no idea that anything was wrong with her. They announced that she was a girl, showed her to me from across the room, and whisked her away to the nursery. I was in the recovery room for four hours, and no one came to tell me anything. I was just lying there waiting to go and see her. When they finally came to get me I said how’s the baby doing? And the nurse very coldly answered she’s having problems breathing because of the cleft palate. I said why didn't anyone tell me something was wrong with my baby? I didn't even know what a cleft palate was. I thought a cleft palate was a cleft lip. She never answered my question. I got down to my room and my family was all there waiting for me. My husband, Damein, said that she had these things on her, called skin tags and a hole in the roof of her mouth. The pediatrician looked her over and told him that they were going keep her in the nursery and watch her for a while. Luckily we had bought a video camera a couple of months before Angelina was born. My mother videotaped them cleaning her up, so I did get to see her via videotape. They did allow her to come see me that evening I was feeding her and the nurse came into the room and grabbed her out of my arms and rushed out of the room. I was so upset she did not even give me an explanation. She never came back to my room to say why she took the baby like that, or to let me know that the baby was ok. After shift change my new nurse told me that the other nurse took her because she was a little dusky around her lips. I did not see any dusky coloring on her, but then again no one told me too watch for any slight color change around her lips. How was I supposed to know? It was her responsibility to tell me what to look for while the baby was in my care. When she brought the baby to me she handed her to me, handed me a bottle and told me to try feeding her. That’s all that she said before she left the room. I fed her, but she was not getting anything from the bottle. This nurse was treating me like I had given birth to a crack baby or a fetal alcohol syndrome baby. I thought that I must’ve done something wrong while pregnant for her to be acting this way towards me. The pediatrician assured me the next day that cleft palate is not something that is caused by the parents, it just happens sometimes. They kept her in that hospital for 2 days without feeding her because they did not have bottles for cleft babies. They did not even put a feeding tube in her nose. Finally after 2 days and no progress they decided to send her to Children’s hospital of Pittsburgh. We arrived at the NICU about 45 minutes after Angelina. They were very friendly and explained everything very well. We were allowed to hold her, feed her, change her pants, and visit her anytime we wanted to. They had her hooked up to monitors to let us know if she was having any trouble with her heart rate or oxygen levels. We were both very scared. They observed her for a few days and were going to send her home. She was doing well with the mead Johnson bottles; gaining weight and not having anymore “blue spells” (she hadn’t had any since being transferred to Children’s). It was Thanksgiving Day when we were to pick her up from the hospital. We got there and the neonatoloist said that she was not going to be able to be released. She had 2 blue spells that morning while having her diapers changed. I was very upset at the time, but now I am grateful that she had her spells that morning. If we had taken her home she probably would’ve died in her sleep. The ENT team came up and said that she would be scheduled for a scope to see if anything was going on with her airway. They did the scope and found nothing. She continued having her blue spells more and more often. The chief of staff of the cleft craniofacial center came and took a look at her. He suggested that she had Pierre Robin Syndrome (PRS). He wanted to watch her closely to see her position, what she was doing, how often, and how long these spells were lasting. After studying Angelina for a few days it was confirmed that she was a PRS baby. She had cleft palate, a small chin, what seemed like a large tongue, and apnea. The Doctor told us that there were 3 surgeries that they can do for PRS babies a Tongue lip adhesion Surgery (TLA), a tracheotomy, or a jaw displacement surgery. He recommended trying the TLA surgery. If the TLA did not work we would have to do a tracheotomy. The surgery went well and she was on a ventilator for 5 days unable to move, they were also giving her a paralytic. When she woke up she was in some pain, but doing well otherwise. They removed her ventilator the next morning. We were crossing our fingers and praying that the surgery had worked. They kept her on her back and absolutely no blue spells; she has never had another blue spell in 22 months. She had some trouble eating after her surgery, so was not released for 15 days. The estimated release time was only 7-10 days after surgery. After she came home she did okay. The only real problem was failure to thrive so they changed her formula to neosure 24 calorie an ounce formula. She very slowly gained weight. Angelina was very slow milestone wise. She did not sit up until she was 11 months old, crawl until she was 14 months old, and walk until she was 18 months old. You could never tell now. She’s still very clumsy, but she is very smart. She is her own person and she’s not afraid to let you know that. She had bilateral tubes put into her ears due to substantial hearing loss. At 11 months old; November 17, 2005 She had her palate repaired and her TLA released. The surgery took 5 hours. The first time that we saw her in the recovery room she looked terrible. Her whole head was swollen, she had blood coming out of her nose, and mouth, stitches were sticking out of her mouth and she also had multiple skin tags removed so she had stitches on her ears and neck. She was released from the hospital on November 18, 2004. She slept a lot for the first couple of days and then she was back to her old self. She’s always had problems with nasal regurgitation and speech. She recently started saying mama, hi, no, dada, and bye bye; she also knows several signs. Most of the nasal regurgitation has subsided, but every once in a while a little bit of juice or milk will come out of her nose. She was also diagnosed with Goldenhar Syndrome, Duane Syndrome, Hemifacial Microsomia, and Vaters Sequence. She currently sees a speech therapist once a week and still sees her team of doctors every 3-6 months. Her team includes plastics, ENT, audiology, speech pathology, orthopedics, orthodontists (dentistry), and ophthalmology. Children’s hospital saved my daughters life and I will always be grateful to them. Her symptoms of Goldenhar are:
Her symptoms of Duane Syndrome are:
Her symptoms of Hemifacial Microsomia are:
Her symptoms of Vaters Sequence are:
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Pierre Robin Network
3604 Biscayne
Quincy, IL 62305 |
