When Eirion was about a month old, she started having a few problems. She had a few apnea episodes--periods where she would stop breathing, and also feeding problems. I told you how much she hated the feeding tube and would pull it out. Every time the nurses put it back in, it would irritate her throat. They taught me how to put it in and check to make sure it was in correctly, but quite frankly the thought of doing that at home scared me to death.
She also started having other feeding problems--she started throwing up-not just normal baby spit up, she would throw up her entire feeding. This was a very scary thing because babies with Trisomy 13 don't have a normal gag reflex so when she threw up, she couldn't breathe. Also if a baby is throwing up, they don't gain weight. One time while Layne's dad was visiting, we were all in her hospital room. I was holding her and rocking her and she had finished eating. She threw up, so I quickly turned her over, but she couldn't get it all out and she stopped breathing. That's when favorite nurse #3, Nancy, came in. We yelled for help and she very calmly took her, suctioned her throat, rubbed her back and with her nurse magic, got her to cry, and therefore, start breathing again. We called Nancy the NICU guru, because she knew all sorts of handy tricks to get babies to calm down, keep them warm, and all sorts of things. She, along with Kristi, also helped Eirion after her surgery. After that we learned that Eirion did much better if her head was elevated during and after a feeding.
After that very scary situation, we had a talk with the doctor and decided that installing a Mic-Key button might be the way to go. A little hole would be made on her tummy and this little thing that looks like a button put in. When it was time for her to eat, a tube was attached to the Mic-Key button and a pump pumped in her milk. The food would go directly into her stomach. I'm probably not describing it very well, but it's a pretty quick and easy procedure that is used a lot. At some future date, probably after her mouth was fixed and she was eating completely orally, it could then be removed. I was a lot more comfortable with this prospect and relieved that she wouldn't have a tube down her throat constantly irritating it.
They took x-rays and found out as was usually the case with Eirion, that things weren't going to be as easy as they had hoped. She had a malrotation(twisting) of the intestine and also some of her internal organs including her stomach, were on the wrong side. So now we had a dilemma. A simple procedure had now turned into major surgery. It's scary thinking about having surgery performed on your 4 lb. baby. We prayed about it and asked our favorite doctor for his advice. He said that left alone, the intestine would continue to twist and would cause an excruciatingly painful death. We certainly didn't want her to suffer. He also said that even if she lived only a few months wouldn't it be better if she were comfortable? We were anxious to have her home, but the surgery would only delay that for about a week. We opted to do the surgery.
The night before her surgery Layne gave her a priesthood blessing. In the blessing Eirion was told that the doctors would not only fix her intestine, but they would be guided to find whatever else was wrong and fix it also.
We were at the hospital early and just held her and I cried thinking about them operating on my tiny baby girl. Then they took her and we waited. Finally, they brought her back. She was so pale and was again hooked up to a ventilator and had a whole bunch of other tubes and machines attached to her. She was still sedated. I stood by her bed and cried. I would have taken the pain from her in a second if I could have. The doctor and anesthesiologist talked to us next. The anesthesiologist told us that when he was putting her under, he happened to be looking right at her and she threw up. Luckily he was looking at her when it happened, and they immediately suctioned her out and he was quite sure that nothing went into her lungs. What a blessing. Then it was the surgeons turn. He had fixed everything and installed the Mic-Key button. Also, while he was in there, he noticed that she had an obstruction in her bowel which he cleared and he also noticed her appendix looked inflamed, so he removed it and sent it to pathology--also a blessing. We got the results back a few days later. She had appendicitis, which if not removed would have killed her. The surgeon said that in his 30 years of being a surgeon he's only seen that one other time. Also, if it had not been removed she would have continued to get sicker and the doctors would not have know what the problem was because you don't think a baby is going to have appendicitis.
We spent more time with her and then went home. We went to see her the next morning and she was not doing well. She was still really pale and sometimes when she would move you could see her grimace in pain. They gave her as much pain medication as they could, but it broke my heart, knowing she was in pain. Especially since I had just had surgery myself. Kristi said they might have to give her a blood transfusion.
We were at a play in Tempe later that day when Kristi called us and said they were going to give her a transfusion. She also had pulled the ventilator tube out again and they had a hard time getting it back in. Kristi told us later that she thought we were going to lose her, but the doctor came and he was able to get the tube back in. We were really sad and discouraged that night (especially me), wondering if we had made a wrong choice.
The next day, though, she had turned pink again and she started to improve and continued to improve and get better. She was getting closer and closer to being able to come home and be with her family.
I love reading your story!
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