Sunday, April 12, 2015

April 12 - Dear Nicholas Sparks (Guest Blogger Denise Meyers)

Dear Mr. Sparks,

Ashley entered the world 2 weeks early on a gloomy Friday morning. Looking back I feel the rain was the angels weeping for the suffering my child would have to go through. We had no previous indications that there were any problems. An ultrasound at 27 weeks told us we would be having our third daughter. My labor was a little different than with my first two as the contractions were very erratic. They never seemed to developed a pattern you could count on. It was a normal delivery right up until Ashley took her first breath. We heard a small whimper and then she passed out. The nurses and doctors rushed to her side and the pediatrician was quickly called. Within an hour we were informed of the diagnosis. Congenital Diaphragmatic Hernia. They gave her a 40% chance to make it to Omaha, the nearest children’s hospital with an ECMO machine. Because of the weather they were unable to life flight her but instead took the 84 mile trip by ambulance. We had her baptized before she left, kissed her and cried. It was terrible to be left behind. You feel so utterly helpless. They called me when she arrived and because my husband hadn’t arrived yet I have to give my consent to put her on ECMO. Three hours later I contacted the NICU and found out she had remained stable enough that they did not put her on ECMO but only the high frequency ventilator.

Morning arrived with a phone call. She had remained stable throughout the night and they were going to do surgery to correct the hernia within the hour. I called my mom and got the doctor to release me from the hospital. We headed for Omaha knowing we would not be able to see her until after the surgery. Ashley’s surgery went well. And from then on it was a long hard road for her. It seemed for every few steps forward she took a few back. At 1 month and 9 days she was transferred back to Columbus. They felt she was progressing well but just needed a little work on her feedings. As soon as she started to gain weight regularly we could take her home. Coming to the Columbus hospital was a nightmare. They were no where near as modern as the Omaha hospital. We had difficulty in getting in to see our daughter and after 3 attempts I finally had to phone the doctor while he was doing rounds at the hospital to have him inform the nurses that Ashley’s sisters were to be permitted to see and hold her whenever we desired. The nurses were not as familiar with the equipment and they were not as adept at the NG feedings. Ashley began throwing up every feeding. Dr. Fry started running tests and discovered that Ashley had developed a bowel obstruction. The cause was scarring from the original surgery. We ended up taking her back to Omaha for more surgery on June 17th. We decided that when she left the Omaha hospital the next time it would for home. No NG tube, no oxygen, no nurses, nothing. Just our dear sweet baby girl. Feedings were difficult. It was so tiring for her to suckle the bottle. We were told to only let her eat for 20 minutes. After that she was burning off more calories that she was taking in. We had to try several formulas because of her spitting up (she had reflux). We finally ended up on Alimentum with Polycose for additional calories. The first two years were very difficult. Ashley developed RSV and pneumonia twice each. Every ear infection caused wheezing and we would end up on breathing treatments and often chest P.T.. Antibiotics didn’t seems to work as well on her infections as they had on her sisters. Each time she got an ear infection we had to get out the big gun antibiotics to stop them. But she did out grow the reflux. It really seemed to lessen once she started on solid foods. We were beginning to forget about the early year struggles by the time Ashley was four. She was looking forward to preschool. Her weight and motor skills were right up with kids her age. Her lung capacity test showed it to be in the normal range. But just when you think you’re out of the woods something snaps you back to reality. Ashley began to complain one morning of a stomachache. She was very persistent about it and would not eat or drink anything. When I went to lift her on my lap I felt a lump in her stomach. I called the doctors and got her in that afternoon. After several tests it was determined but her spleen was extremely enlarged. They were sure that it would go down on it’s own but were concerned with the fact that she would take no liquids. We decided to check her into the hospital and start her on IV’s. Ashley has never had an easy time getting IV’s in or blood drawn and this time was just as bad. Once the IV’s were started she seemed to settle down but that evening she began to complain again. A surgeon was called in and Ashley was diagnosed with splenic torsion. Her spleen had become twisted on it’s blood supply and was becoming engorged. Surgery was required. A call to our pediatric surgeon in Omaha was made and for the 3rd time Ashley was in an ambulance heading for Omaha. Surgery went well and they felt that they had managed to get to the spleen in time to save it. However within 12 hours of surgery Ashley developed a fever and as was feared the spleen was losing function. Nothing more could be done to save it. Ashley recently underwent another radioactive scan and there is some spleen activity but it is very little. Ashley now takes 1 teaspoon of Amoxicillian every day as a preventative measure.

Ashley is currently planning her 7th birthday party next month. She is having difficulty deciding whether to have it at McDonalds, Amigos, or the bowling alley. She has several best friends, receives nothing but praise from her teachers, runs with her sisters and loves bouncing on the trampoline. The doctors told us that Ashley could do everything a normal child could do but that she would never be able to do some things like track. I foresee Ashley as proving them wrong. She may just surprise them and end up being in the Olympics or Boston Marathon. There is nothing these children should be limited on. Ashley is missing the lower lobe of her left lung and when she was a child she would often get winded. Now when we go to the zoo she runs ahead of us, back to us, ahead of us and back again. She seems to have unlimited energy and I do not notice her getting winded. But then an ear infection strikes and we are back on breathing treatments. Never take anything for granted. Live each day with them to the fullest. And remember to let them live it to the fullest also. It is very hard not to smother them with protection. My mother would have preferred to have built her a bubble to live in but Ashley loves living in the real world.

Written by Ashley's mom, Denise Meyers (Nevada)

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