At first Eirion got her nutrition through an I.V. Because of her cleft lip, she wouldn't have been able to nurse and at 33 weeks, she was too small and weak anyway. At 33 weeks, a baby doesn't know how to suck yet. So I began pumping. I pumped until she passed away. I tried to give her breastmilk as much as possible because it was made just for her and she tolerated it better than anything else. As she got a little older and bigger we did have to supplement with formula because the demand exceeded the supply but for the first 3- 3 1/2 months she only got breastmilk. Pumping was never my favorite thing to do, but she was worth it.
One of the blessings we found out was that unlike most Trisomy 13 babies, Eirion's heart seemed to be normal. Most babies born with Trisomy 13 have serious heart problems. Their average life span is about 2 1/2 days to about a week.
Back to the NICU. After a few days when she became more stable, they gave her a feeding tube that went in her mouth, down her throat into her stomach and also started giving her a little bit of breastmilk with some powder added that gave it more calories. With preemies, gaining weight is always a concern. She hated that feeding tube and pulled it out on a routine basis. She hated having anything in her mouth (remember the ventilator?) because it was a nuisance to her.
About this time we also had the pleasure (NOT) of meeting a Dr. whom we call Dr. Doom. He really had no business with us and wasn't even a regular doctor at Banner Desert. He somehow though felt it was his duty to let us know just exactly what Trisomy 13 was and what a horrible diagnosis it was. He cornered us near her isolette and proceeded to tell us what a "devastating diagnosis" it was. He went on to tell us all the challenges we faced and that our daughter would never, crawl, walk, smile, coo, and that she would "never interact with her environment." We sat there stunned at first. We had read the stats and already had everything explained to us. I don't know why he felt it was his personal responsibility to tell us all this stuff we already knew. Then I got mad and I thought "How dare you tell me what my daughter can and cannot do or will or will not do." As far as never interacting with her environment, I knew that was a load of crap. No matter who you are or what your abilities or disabilities are you can feel love and respond to it. Maybe her body was damaged, but her spirit wasn't. I didn't want that man anywhere near my daughter ever again. I think he knew he had crossed the line because after that he was as nice as could be. After his little talk, I knew my most important job as her mother was to let her know how much she was loved.
Eirion was born on Friday and on Sunday we got the results of her DNA test. She did indeed have Trisomy 13. There are 3 different types. Mosaic, which means only some of the cells have an extra 13th chromosome, translocation(can't remember exactly what that is) and full Trisomy 13. Mosaic and translocation are not as severe. Eirion had full Trisomy 13, the most severe type. That meant that every cell in her body had an extra 13th chromosome.
I finally got to leave the hospital after about 5 days. My blood pressure was still high, but it had gone down enough that they discharged me. The doctors figured one of the reasons that it wasn't going down as fast as they had hoped was because of stress (ya think?). I had really missed my kids, but it was so hard to leave my baby there. The nurses are really good, though, and they call you if anything changes and we would always call before we went to bed and right after we got up in the morning.
We kind of got into a routine. My mom had flown down from Idaho to help out, so she took care of Jared. Layne would usually get up and get the kids breakfast and make their lunches so I could sleep and continue to recover. I don't remember how they got to school. I think the principal took them a lot (he lives just a couple of miles from us and his wife and I carpool in the afternoon). Kyrie also drove them once in a while and Layne did also. Then Layne would go to the hospital and spend time with Eirion on his way to work. Everyone knew Layne because he's a super friendly guy and because he would go in and sing and read to her. His favorite song to sing to her was "Caledonia" by Celtic Woman. I still can't listen to it without crying. I would get ready at home and then I would head up there to spend a few hours with her. I tried to be home when my kids got home from school so we could keep their lives as normal as possible. Layne would also stop on his way home from work. Sometimes I'd return at night when the kids were in bed. In some ways we did well at keeping things normal at home and in some ways not so well. It's hard to try to keep your life "normal" when it's anything but.
One thing that was really hard was that the only kids who could see and visit her were the three oldest. It was RSV season so you had to be 12 to be in the NICU. Zak was really sad about that. He couldn't understand why he couldn't go see her and that broke my heart.
One night we decided that for family night we would go see Eirion. They have an observation window where they can bring the baby and visitors can see. All I can say is thank goodness for nurses who are willing to break the rules. When we got there, I stayed with the younger kids while Layne went and talked to the nurses. Enter favorite nurse #2, Susan. She was another one that I knew I didn't have to worry when she was taking care of Eirion. She was wonderful and was also at Eirion's funeral. Anyway, she came to us and said that she had permission for all the kids to come into the observation room and she would bring Eirion to us. It was like Christmas! They were finally going to get to see, hold and touch their baby sister. We told them how she looked and had shown them pictures so they were prepared. It was the best family night ever. As I was holding Eirion, Jared who is 4 said, "Mom, why are you holding her?" and I said, "Because she's my baby." He then looked at me and said, "But she's my baby sister!" Only one of our children was a little reserved. He was having a hard time accepting that he was going to have a special needs sister. But after we brought her home, he fell in love with her too and would sing to her and liked to hold her. We all adored her.
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