Tuesday, January 5, 2016

Hunger Pangs and Pains

We'll all the tests, labs and X-rays we were waiting on today came back inconclusive for NEC-so we're doing it all again. Meaning the providers believe it best to withhold feeds another day, allow her gut to rest another day and repeat the labs and tests in the morning. This hasn't been easy on the baby. She is so hungry. We've tried to stay on top of her pain but that's been difficult with her being so hungry. She's been getting very upset most of the day. We finally had to relent and restart oxycodone because she was just too uncomfortable. We had been trying to stay away from opiates because her belly is upset already but it was just too much. She needed relief. 
Right now she is not showing clinical signs of NEC which is good but her X-rays show possible abnormalities and her lactate level is somewhat elevated again. We've been questioning the providers all day as to potential possibilities of cause other than NEC. We hadn't shared this (because we've been trying to come to terms with the potential diagnosis ourselves) but Avelyn had an abnormal DNA screen come back a few days ago. She tested positive for the abnormal cystic fibrosis gene. The test is inconclusive in and of its self. It tests for the mutated gene but doesn't tell of a person is only a carrier (one ressive gene) or had the disease (two ressive genes). The gene itself is fairly common in Caucasian populations with 1 in 36 being a carrier. Sean and I don't know who passed the gene or if we both have it. We'll have to be tested before and if we decide to ever have more children. If Avelyn does have cystic fibrosis we're in a whole new arena I can't comprehend or handle the thought of right now. It would be extremely hard on her already over taxed little systems to deal with CF. We've been praying no-stop she's only a carrier. 
Until this issue with her bowels she had not shown any clinical signs of CF (although many infants don't) so the providers weren't concerned. Since she has had issues with her bowels I have been pretty adamant about getting further testing-now rather than outpatient as initially planned. I don't want her to be suffering with a disease that they could potentially start to treat. However her current clinical signs are necessarily in line with usual CF symptoms either.
Another potential cause is my diet and my history of diary allergies. Sean was smart enough to bring that up to the nutritionist today. I hadn't thought of it as very relevant, except when it was suggested to fortify her breast milk-I requested nondairy based. But anyway diary allergies are often genetic and its possible that she is more sensitive than I am. Meaning her gut could be reacting to the very small amounts of diary I consume that cross into my breast milk.
Another potential cause and our hope is her little guy is still trying to process food in general. We've stopped and started feeds for prolonged periods of time 3xs now. All the stopping and starting is hard on her little healing and developing system. These two days off feeds could be doing her more harm than good but it's necessary to prevent the worst complications should she have NEC.
So we're in for another long day and night with a sad and very hungry baby. She needs her nutrition more than most any other baby to heal internally from surgery. We're already seeing outward signs of decreased healing with her incision opening back up. She needs to get the all clear tomorrow. I don't like thinking of her little surgically altered heart being stressed without adequate healing proteins. She's a strong girl but she isn't invincible. Please pray for peace and a fully happy belly. 

As always, much love to you all.

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