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| Hello, My name is Melissa and my daughter has BWS. She was
born 5 weeks premature and weighed 7lb 5.5 oz. She was cyanotic at
birth and was not breathing. She was admitted immediately to Children's
Hospital of .... where she was treated for respiratory distress, hypoglycemia
and what they described as genetic defects. She was also diagnosed
with macroglossia and hydrocephalus. I was released on the 22nd, and
we recd a phone call at 6am on the 23rd. Our 3 day old baby was in
need of emergency surgery. They found an ileal perforation (hole) in
her small intestine and her bowels were emptying into her stomach.
She came through the surgery fine and had a colostomy. Did I mention
her HUGE tongue?!! She had a terrible time eating and required tube
feedings. Several times the nurses told me if she could drink from a bottle,
she would be released. As if I could somehow control things! Finally, I broke down and learned how to insert the tube up her nose and down into her stomach so that I could take her home. The day before she was scheduled to be released she stopped breathing. I demanded a sleep study (totally against the doctors recommendations) and refused to take her out of the hospital until one was performed, she had come so far and I was not going to lose her because they decided the $140,984.47 hospital bill was high. She was diagnosed with sleep apnea and put on a home monitor, along with oxygen 24/7. So after 35 days in the NICU, I was suppose to take my precious Danielle with; a colostomy, hydrocephalus, macroglossia, sleep apnea, and "dysmorphic features" home. WHAT?????????? Okay, God does not give you more that you can handle my mother always said, of course now I am agreeing with Mother Theresa "I just wish he did not trust me so much". I can do this. We were home for 3 days and she got diarrhea! The doctors warned me if she got diarrhea, to bring her in immediately since colostomy babies dehydrate very easily. Yes, you guessed it, she was admitted for "dehydration and malnourishment". I have tons of horror stories about this hospital stay (I walked into her room after being there 3 days straight and her iv had blown and the whole side of her face was swollen due to the fluid not getting into her veins) and neglect, but lets stick to Danielle. Her surgeon finally told me she was malnourished due to the colostomy, not my parenting. What a relief that was, believe me. She was scheduled for a colostomy take down 04/13, which happen to be a Friday the 13th. But all went well.....Until she went into recovery. Now we were in the PICU and I left to get a drink, I came back to see doctors and nurses standing over her bed rushing around like an ER episode. Turns out she stopped breathing (her apnea had disappeared and she was no longer on oxygen) and they had to bag her. This happened 4 different times and was thought to be due to the morphine she was getting. After 14 days she was released from the hospital. Now on to the specialist. The first issue we had was all the air she was swallowing with her bottle. This was giving her a bloated stomach and painful gas. We were referred to a stomach doctor named Dr. Grunow. He suggested mixing rice cereal in with her formula to make it thicker. It was a very very good suggestion! I would mix her bottles in the blender with formula and cereal until they were almost the consistency of a milkshake. This made her take in less air and strengthen her mouth muscles. Slowly, I would reduce the cereal in the bottle each month until she was drinking only formula. My mother-in-law read about a boy named Jake who had radio frequency surgery done on his tongue so I printed out all the info I could find and took it to our ENT, Dr. Keith Clark from .... Medical Center. He researched some more and decided she was a good candidate. The first surgery he did was put tubes in her nose to widen her nasal passage. This was to help her breath through her nose when her tongue swelled and reduce the need of an emergency trachea. The tubes were horrible and I don't recommend them. I had to stick a smaller tube up her nose and suction with an electric suction machine that was so loud you had to scream to be heard over it. Not only did she not like the tubes, but the noise would scare her. On the funny side (every situation has one) the tubes made her nose stick up like a pug, but the doctor assured me it would not stay that way. The tubes lasted 5 days. She was so miserable she would not eat and they had us come in as an emergency bases and have them removed. Then was the tongue surgery. This was the first time Dr. Clark had ever performed this type of surgery and the first time it had ever been done in that hospital; needless to say we were all pretty nervous. The first one was by far the most successful. We just had our fifth tongue surgery June 7th. Hopefully this is the last. The tongue swells tremendously the first 24 hours, but once you plateau, it goes down rather quickly. It also helps to get a prescription for tylenol with codeine. The first 24 hours were really tough on her and it helped to just have her sleep it off. This is so much better than having to cut the tongue, but very necessary. The doctor said if we had done nothing, she would not have grown into her tongue and would eventually have to have jaw surgery consisting of breaking her jaw bone and rewiring it shut. The rest is working itself out. As far as dysmorphic features, she is beautiful. I'll admit, at first with her eyes slanted the way they were and her tongue sticking out she did look a little like a down baby but now that she is 16 months old, her face is normal. We go to our genetic doctor every three months and they give her a complete ultrasound to check for abnormalities. We also see her neurosurgeon every three months and repeat her brain CT scans to monitor her hydrocephalus. So far she does not need a shunt, and he is hoping her fluid will be completely absorbed by 24-36 months of age. She is behind the "normal activities" of babies her age, but she is coming along. We try to take one day at a time and appreciate the Cheerios scattered all over the floor. My helpful hints --Ask your nurse for a consultation with a occupational therapist. They showed us how to put your index finger and thumb on both sides of the babies mouth and hold her chin up with your index finger. This gave a "seal" around the nipple and helped the her learn to drink from a bottle. --Watch your babies breathing! The large tongue can obstruct the airway causing apnea. You will not believe the peace of mind a home monitor can give you, and we never had a false alarm with ours. --Ask your doctor about radio frequency or Somnoplasty surgery. It is far less painful for your baby than actually cutting the tongue. Remember how it felt the last time you bit your tongue! --Your baby might have delays. But remember, every baby is different. Our first baby was walking at 10 months, off the bottle and pacifier at 9 months and climbing out of her crib at 11 months. Danielle just got off the bottle at 16 months. Look at it this way, your baby will be your baby longer. While other babies are pushing away from their parents so they can explore, your baby will be laying on your lap or resting their sweet head on your shoulder. --Ultrasounds are crucial! I would write ultrasound in big letters on the calendar every three months so I would not forget. --Don't skimp on the diapers. Danielle has a larger left side including kidneys that her right (common in bws children) and the urine output is usually increased. Diapers that do not fit well or don't have sufficient absorbing material will leave you a big mess. --Last but not least, ask for a copy of your baby's discharge papers. A hospital social worker told me to request one to keep on file, and if your baby qualifies for ssi disability, it is convenient to have a copy of the discharge paperwork to include in your application. I hope this helps. Please contact me at Nemesis31@msn.com for anything you need. June 2002 |
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this page last modified: Tuesday March 27, 2007