First we had to deal with all the tests done because she had Down Syndrome. She had an EKG to check out her heart, a common DS problem. She had to have her blood checked because of my gestational diabetes and she was found to have low sugar. They started pushing her feeding. They were so worried about how much she was eating. I was afraid to even touch her. It seemed that she wasn't my baby at all. The pediatrician came in and looked her over. She had the results of her heart tests and said that Ashlyn was only suffering from typical newborn issues. Prior to birth a baby does not use its lungs so the body compensates for that by bypassing the lungs using a small hole in the heart and a small blood vessel, both of which were still evident but appeared to be closing. They also noted that she the lower right portion of her heart was enlarged. I was told these things were pretty normal and that they would clear up. Ashlyn was born on Wednesday night and finally allowed to go home on Saturday.
We began to start setting up a routine. The DS was foremost in my mind. I wondered how this would affect her future. Would she make friends? Be able to be on her own? Would my son have to look after her once we were gone? Would she ever get a job? Be able to read? But even with those thoughts late at night, she was just a beautiful baby during the day. She needed to be snuggled and changed and fed and most of all loved. And we loved her so much.
I noticed that she was beginning to eat more slowly. Then on Tuesday morning she wouldn't wake up to feed. I tickled and kissed her. I wiggled her and took her out of her blankets. I did everything the hospital had told me. She just wouldn't cooperate. Finally about mid-morning she took her bottle and began to eat only to seem to choke. I pulled out the nipple and she just coughed up all the milk. It poured out her nose and mouth. I had been discussing with my husband whether we should take her to the hospital, now I was crying. It scared me and Ashlyn looked at me with her big eyes, just seeming to be asking for help. As my hubby came down the stairs into the living room I said we have to go the hospital now. He was already dressed and ready to go. We quickly piled everything into the car, including my son and rushed to the Children's Hospital.
We were worried as to whether she was okay and although she cried most of the way to the hospital, at least it told us she was still breathing and alive. Once we got there, we parked and rushed into the hospital only to stand in line. The woman in front of us in the triage line moved and let us go ahead of her. Once we were called we all went into a little room. The nurse asked us questions as she looked little Ashlyn over. Abruptly she said, "this little one needs attention now", picked her up and rushed into the back with us following. She called for teams as she found a bed. She ordered a warming bed and immediately put my tiny baby on oxygen. I just started to cry. My husband was strong and able to answer questions. As more and more doctors arrived I took my son out to the waiting room and called my parents. They said they would come to the hospital as soon as they could and take my son if we couldn't leave yet.
The first part of my nightmare started that day. Ashlyn was admitted to the hospital that day and ended up staying there for the next 6 weeks. The hardest part was that we brought her in because she was having trouble with breathing and eating which we thought was because of a stuffy nose and it seemed that she just got sicker most of the time she was there. My husband stayed as the hospital for the first week while my daughter was in Unit 2, once she was moved to the PICU, he ended up getting sick and had to came home.
My poor baby, we had a parade of doctors and nurses and specialists. We had the genetics people come in and talk about her diagnosis of DS. They tested her for a variety of infections but found none. So we thought good, she will come home soon. But then they found she had obstructive sleep apnea and had to go for more tests. These tests had to be done in the PICU so off she went. There was no rooming in in the ICU and it was here that she was first given an NG tube. I still remember being on the phone with my husband while he was trying to explain what was going on and hearing her scream in the background. It was awful. I was angry and didn't want such a thing done to her but what rights do you have once your child is in the hospital? None. The doctors do whatever they feel is best and it is basically "screw you". I kept being told that it was for her own good.
It took a few days longer than we thought to find a CPAP to fit her tiny nose and face so she was put on high flow oxygen. Finally she was tested on the CPAP and able to move back up to Unit 2. Good, now perhaps we could start looking at going home but no. Things only got worse. We received a phone call at 2:00 in the morning on a Thursday and were told that they were no longer feeding her by mouth because she had had an "episode" and scared the nurse. I was furious. What the hell were they doing to my daughter? We went in to see her the next day and I told them I wanted to speak to a pediatrician now, right now. It took about 2 hours for the doctor to show up but I was so angry they ended up bringing in most of the team. I told them that she had been fine when we left the day before so what the hell had they done? They said that they didn't know what had gone wrong. They suspected that she had aspirated her milk and because they weren't sure they didn't want to chance feeding her by mouth so she was back on the damned NG tube. I was still angry and told them that she had just come in for a stuffy nose and just seemed to be getting worse. They said they had arranged for a feeding test to take place the next week.
On Saturday again at 2:00 we received another phone call. Now they had found blood in her stool and were afraid she had NEC. I asked my husband what was going one. He was half asleep and said it was nothing. I was pretty sure that it was more than that and called the hospital back. I told them I didn't want a resident to call I wanted the pediatrician. I received the call back and was told that Ashlyn could just have a cut, or perhaps an allergy to milk but they were suspecting it was NEC. She had had an x-ray and they were waiting for the results but because of the seriousness of NEC Ashlyn would be taken off all food until she had recovered. I was horrified. No food? They weren't serious? I was pretty hysterical. What were they doing to my baby in that hospital?
We again went back to the hospital. The surgeons had been consulted and came to speak to us. The plan was to put her back on antibiotics for 5 days and no food for 5 days and see how she did. There was a possibility was requiring treatment for up to 14 days. She would require a PICC line to be inserted in order to feed her with TPN, which due to its consistency and content could not be administered through a normal IV. It would take a couple of days to get a PICC in and she would be on just normal IV in the meantime. Then she blew her IV and had to have another inserted but no one could get the damn thing in and she was beginning to become dehydrated. We had gone out to eat something and we received a call that my husband needed to get back up to the hospital right away to sign a consent. No one had been able to get a line in and they needed to go to the OR to have something done right away. He called me from the hospital to explain the worse case scenario which was an insertion point in her neck when the doctor came out and said he had gotten it in in her foot on the first try but we would be lucky if it lasted 24 hours.
Ashlyn's first PICC line was inserted the next day but the doctor was not too pleased with the placement and advised that another should be placed so they didn't run into the same problem again on a weekend when there was no one around to do it. So I had to take my poor baby back up to the OR for a second insertion. This one went well and it stayed in until the day she was released from the hospital.
I went on a dairy free diet in order to produce dairy free breastmilk, which I was told would be best for her. Even if she didn't have a milk allergy it would be easier on her stomach when they were able to start feeding her again. Of course all of this delayed the feeding test. Finally after 5 days they declared that the NEC had resolved and they would be starting her on Pedialyte to see how her bowel would take it. If that worked they would start her on breastmilk and begin to gradually wean her off of the TPN. This process took about another week. Then they had to schedule the FEES test for feeding. She came through that with flying colours. She was not aspirating her milk. I then wanted to start her back on bottle feeding. My major concern was with creating an oral aversion where she would end up not wanting to feed by mouth at all. So it took another week or so before she was back to feeding primarily by bottle. She was finally released on February 25. She came home with her CPAP machine and the hated NG, which my husband and I had to be trained on how to insert and remove. I really hated that. In the end she didn't need it and it was removed after a week and never replaced.
I believed that the nightmare was finally over. I had been so sure all the time she was in the hospital that she would never come home. I was sure they would kill her but in the end she did come home. Of course I now had to deal with the new reality of having a Home Care Nurse at my house once a week to check on us. The respiratory therapist would also be showing up to check on Ashlyn but at least she would be home where she belonged. Maybe now I could start to feel like she was my daughter. By this time the fact that she had DS was irrelevant. We just wanted her to live and grow, anything else we would deal with as it came. I was so afraid that the nurses would take her away from me again. As much as I wanted them to come to the house and tell me everything was okay, I also dreaded those visits.
