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Emma Claire's Story
Emma Claire was born on Friday, February 25, 2005. She was almost two weeks past her due date, so I was scheduled for an induction, which went well. I only needed Pitocin for about 2 hours and then the contractions started. The nurse broke my water at 10 a.m. and Emma was ready to go at 3:00 that afternoon! Since I had only been experiencing back labor, my doctor knew that Emma was positioned wrong. While I was pushing, Emma was stuck for several minutes and her heart rate continued to drop. The Neo-Natal Intensive Care team was brought in and I was told to get Emma out quickly. I did, and at 3:20 p.m. our little Emma Claire was born!
Emma weighed in at 7 pounds, 12 ounces and was 20 inches long. She nursed great in the beginning. She latched on, but didn't want to stop! She screamed when they took her away and would only be soothed by nursing. I was happy to do so! During my two-day stay at the hospital, Emma nursed constantly but also threw up constantly. The lactation consultant said that it was normal for some infants to spit up a lot and that I should just keep feeding her on demand.
The night we brought Emma home, however, she slept for seven hours and didn't wake to nurse. I woke her and she would only nurse a few minutes and fall back to sleep. Again, the lactation consultant I worked with told me, over the phone, that it was normal. She said, "Babies go through a lot during delivery...they need their rest." I continued to wake Emma to feed. All she wanted to do was sleep. I was getting worried.
A nurse came to the house the following Wednesday and Emma had lost seven ounces. She was also slightly jaundiced. The nurse told us that was normal and that she would get better when she was nursing more regularly. I told the nurse that I was trying to get her to nurse all the time, but she just kept reassuring me.
Reflux Diagnosis, Testing, and Treatments
The following night, Emma vomited up blood. I took Emma to our pediatrician the next day and he diagnosed her with thrush and reflux. They told me to keep pumping and trying to nurse, but recommended that we supplement with formula to help with her jaundice. Emma was put on Axid Oral Solution for her acid reflux and we went through two months and several different medications to get rid of the thrush.
Much to my dismay, I got thrush from Emma and nursing became very painful. I continued to pump, but Emma did not want to nurse for long periods of time, so my milk supply diminished within a few weeks. Emma, on the other hand, seemed to prefer the bottle.
Over the next few months, Emma's weight slowly increased, but feedings became worse. She was always constipated and all she wanted to do was take small amounts of formula constantly throughout the day. Our doctor said that she was probably trying to soothe her burning throat. She continued to vomit and spit up formula all day and throughout the night. Her sleeping was horrible. She would only sleep for short blocks at a time, and seemed to be constantly in pain.
In July of 2005, Emma started to refuse the bottle, and our pediatrician ordered an upper G.I. to determine reflux and make sure everything looked okay anatomically. Thankfully, everything appeared normal, but the upper G.I. showed "several significant reflux episodes into the throat region within minutes of the scan." I remember watching the computer screen in horror as Emma was drinking the bottle. You could see Emma swallowing the mixture and then refluxing it over and over again. I dont even know how she could continue drinking. After the bottle was finished, she vomited all over the table. After our doctor was sent the results, Emma was immediately put on Prevacid, a stronger medicine to help control the acid.
Emma was also put on a special type of formula after her upper GI. The hypoallergenic formula is easier for her to digest because the milk proteins are broken down. It has helped her reflux and constipation to some extent, but by no means cured it. We have also found that Emma is very intolerant to milk and soy proteins, so we have to watch her diet very closely, but lately we have been adding some small bits of cheese and she is doing well with it.
Emma's Reflux Worsens
In November of 2005, Emma saw a pediatric gastroenterologist for her reflux and ongoing constipation issues. He put her on a combination of Prevacid and Zantac for her reflux, and Milk of Magnesia for constipation, but even those medication combinations only helped for some time. Currently, Emma is on 15 mg of Prevacid in the morning, and 7.5 mg of Prevacid in the evening. She is also on Miralax, a medication that helps to soften her stools, allowing her to have regular bowel movements. We hope this new medication regimen works, as Emma is still refluxing throughout the day and night, although her vomiting and spitting up have reduced significantly. She has learned to swallow the reflux material (formula and/or solids) and is now a silent refluxer. In addition, Emma still gets hiccups almost daily and gags and chokes very easily.
Feeding Issues
Since starting solid foods, Emma has learned that eating is painful and she significantly limits her intake at each meal. Over several months, she continued to drop on the weight chart, starting at 75th percentile at birth to the 20th percentile in August.
In January of 2005, the GI referred Emma for an evaluation by a speech language pathologist to look for feeding problems. She found nothing out of the ordinary with her feeding skills except for a high-arched palate. After months of using distraction techniques and using suggestions of supplements in her food, Emmas GI has prescribed Duocal, a calorie and carbohydrate-fortified powder, that is added to her formula. It is working, as her weight has held steady at the 20th percentile over the last three months. Now, our hope is that Emmas new medication dosage will help her reflux symptoms to improve so that she will want to eat more.
Other Issues
Along with her GERD, Emma has also dealt with several severe ear infections and she had ear tubes placed when she was 7 months old. She has had several urinary tract infections, and is being seen by a pediatric nephrologist (kidney specialist) to monitor this. She also has ptosis (nerve damage) of her right eyelid, from trauma to that area during birth, and is being monitored by a pediatric ophthalmologist. Emma also recently had a bone-age x-ray, and several blood tests done to check for reasons why her soft spot, or anterior fontanel, is not closed. We are waiting until she is older to run more tests, as some children's soft spots do not close until much later and with no problems.
Even Still...
After all Emma has gone through, her father and I are amazed at how loving and extremely intelligent Emma is. She is ahead in most areas of development, and enjoys being a happy and silly toddler. Her favorite things are playing outside, art activities, books, playing with her baby dolls, and having fun with her father and I.
Thank you for reading Emma's story. We are fortunate that our pediatrician diagnosed and began treatment of Emma's reflux at such an early age. Many children are diagnosed much later, and complications are more difficult to fix. I know that Emma's reflux is not as severe as that of some children. GERD is, however, an ongoing battle that her father and I are desperately trying to win for her.
Written by: Amanda, EmmasMom
Read more about Children's Stories:
Zac's Reflux Success Story,
Noah's Story,
Evan's Story,
The Story of Andrew,
Owen's Story,
Raeden's Story,
Olivia's Story,
Hannah's Story,
Samuel and Jennifer's Stories
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