Thank you for your questions from the last post. Theres a couple of questions I thought best to answer in a post of its own because I know several wanted to know the same thing. Question 1: Did I know the diagnosis of Trisomy 18 during pregnancy? Answer: No, I did not. There was a suspicion of it at my 20 week ultrasound based on a level 2 view but no actual testing was done. This suspicion was dismissed three weeks later. We did take the Maternity 21 test at 10 weeks that looks for Trisomy 13, 18 and 21 and it came back low risk for all. Questions 2: Why does Everly have a tube at all and is it because of a mouth malformation that causes her to have trouble swallowing? Answer: Due to the fact that we knew she would be born with a heart defect, we were cautioned that she may not be able to nurse for a few days. This would be dependent on her overall health after delivery. After delivery she was put on oxygen and was being observed closely. During the next two weeks, she was fed via IV TPN nutrition. After a couple of days, a bottle was attempted and within a couple of sips, she choked and turned blue. The nurses needed to bag her in order to resuscitate her. At this point, it was considered too dangerous to try more liquid via mouth so an OG (tube in the mouth) was inserted. At 6 days old, we were given the diagnosis of Trisomy 18. Knowing the numerous concerns with babies with Trisomy, it was recommended that we not attempt bottles or nursing due to the very likely possibility of Everly aspirating and/or choking. (She does have a high palette which is characteristic of babies with T18). During her first month and a half of life, she would suck on a preemie pacifier. However, after that, she stopped sucking on them for some unknown reason. I did at this time also consult a lactation consultant to see if I could get her to latch on. I was unaware of any T18 babies who were able to nurse. Very few T18 babies take a bottle. Even if they do, 90% have cardiac issues and the work involved with drinking from a bottle is too taxing on the body causing them to burn too many calories. All the T18 babies we have come to know either have an NG tube or a permanent feeding solution. At about 6 weeks of life, we had a swallow study done (test under x-ray) to see if she could safely relearn sucking on a bottle. She passed the test but only with thickened formula not breastmilk as that was too thin and it cant be thickened. This is why she is in speech therapy: she has been working on relearning how to properly suck, swallow, breathe (proper sucking sequence) and to prevent her from developing an oral aversion. Its a very long slow process but one that is necessary for her as she continues to grow.
Posted on: Sat, 25 Oct 2014 05:40:31 +0000
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