Saturday, February 21, 2015

The unknown

These past 4 weeks since Penelope's birth have been emotional in so many ways. For the first 3 weeks we were dealing with the double life of hospital, the visits, and home life. Penelope being so pure and sweet made it hard for me to want to leave her, and dealing with the early onset of the terrible twos at home made it even harder to be home. I have felt torn at times, but luckily Penelope is in a wonderful hospital and the nicu nurses are among the very best.
Penelope was born with IUGR (intrauterine growth restriction) and was very small. I had to be induced 4 weeks early because she just wasn't growing. So for the first 3 weeks after her birth we were told that she was weak, and a poor eater because she is premature, and an IUGR baby. We kept hearing from different nurses that these are typical symptoms from these babies, and that one day she will just snap out of it.. Then her due date started closing in on us, and she was no closer to learning to eat than when she was two days old. February 16th was the day I feel we made a switch in thinking. She was big enough to be doing better than she was, and everyone just threw up their hands and said "She'll get there on her own time"
One morning as I was rocking my baby in her room, the charge nurse came in and told me that this week our neonatologist would be Dr Eustenbrock and that she had every confidence in him, and his keen ability to solve puzzles.. A puzzle was now what our daughter was I thought.. Up to this point I hadn't worried much because she was so little, and I was told this was typical behavior, but now finally we were looking for answers. Why did she have failure to thrive? Why did she not root, or show hunger cues? Why was she so quiet? never really crying, Why did she seem lethargic? With not much muscle tone? And so it began the quest for answers.
Dr Eustenbrock was just the man for our case. He kinda reminded me of a nice "Dr House". We talked MRI, micro arrays, Chromosome testing, Pathway testing to see if another method would work for her. They tried taking her off of the feeding tube to see if she showed any hunger cues after 4 hours, but nothing was working. She would go 4 hours with no food and still not want to eat. We tried speech therapy visits, neurology visits, we had social workers, and ILCBC consultants working with her and I, but nothing seemed to change. She wasn't getting it, and we were afraid that with all of the pushing we would give her an oral aversion to eating and compound the situation. So we continued to pray, and wait.
After much consulting with other Drs they came to the conclusion that this may be a brain issue of some variety, and that the MRI needed to be done, along with the chromosome testing. So the blood was drawn, and the test sent off to be examined in a lab in Texas, and the 4-6 week wait for results started. They planned for the MRI on February 20th and I received calls from anesthesiologist telling me the risks involved in the intibation process. All the while a plan was set into motion for me to be able to bring my sweet baby girl home. Several lessons needed to be given in order for us to feel confident in inserting her feeding tube, and nutritionist appointments made to follow up at home care to make sure we give her adequate nutrition amounts, and that the breast milk was fortified correctly. During this emotionally draining time in our lives we were also dealing with an almost 21 month old who was going through some crazy animalistic tantrums of the terrible two variety. And I was trying my best to give her the attention she craved, while being latched to the pump 8-10 times a day. It was chaotic in our house and the house stayed a mess despite the cleaning efforts I made.

I was so worried about my little baby, and what all of this meant for her. I asked the Dr if he could tell me what he might be looking for in terms of what may be wrong, but he was tight lipped because he wasn't sure, and didn't want to get something in my head. So Adam took it upon himself to type in her 4 symptoms, and see what came up.. and well the only thing that fit perfectly was Prader willi syndrome. It fit, although we have no idea if this is what she has until all of the test results come back. But we are trying to emotionally prepare ourselves for if this is the case. We love our little baby no matter what the outcome is. As every parent would, we want the best life for her, and want her happiness. I have been trying to prepare myself for what the outcome could be. Some hours I am doing fine, and some hours I can't keep it together. I have been reading a bit on Prader willi just to be informed in case this is what she has.. I found this blog entry, and entered a support group for this syndrome just to get better information.

We got the news that we will be able to bring our Penelope home on Monday Feb 23rd, and we just can't wait!

1 comment:

  1. What a difficult ride this has been. We are praying for your family and sweet little babe. Glad she gets to come home soon!
    Love ya!