Yesterday morning, I tried to make an appointment with the specific geneticist we were referred to, but I found out the earliest that he could see us was October. I just about lost my mind. I felt like I was in no mans land - just enough information to scare the life out of us but no one could help us get answers. I ended up calling the pediatrician's office and asked if they could get ahold of the geneticist and make something happen sooner.
As we waited for the call back, we took our precious little Sammy girl into the children's hospital to have her blood drawn. I was running on no sleep, and watching them pin her down, tourniquet her tiny little arms until they were white and poke her while she shrieked, was a little piece of hell for me. I know parents watch their kids go through far, far worse things and that this is nothing. But to me, I was just sickened and it was awful.
|Our sweet, little Sammy sleeping at home after the blood draws earlier in the day.|
We also got some answers as far as timelines and tests go. Sammy had a urine collection done on Monday and her blood draw yesterday. The geneticist recommended a third test, which would require a blood draw to check for some enzyme or something (I think?) Because we had just returned from the lab, we will have to go back on Friday to have poor Sammy poked again for more blood. But that should be the end of it, I hope.
We should have the urine and first blood test back within 10 days or so and those results should be pretty telling about where we stand with this disorder being legitimate or a false positive. And the final blood test will take a month but will seal the deal either way. I pray that these initial tests are so blaringly clear that we won't have to worry for that last test and it's just final confirmation that this truly is nothing.
Anyway, there's my update on her health and I am so, so grateful for the kind words, prayers, and encouragement from my blog readers. I know that this is what being a parent is all about - being worried because you love your baby so very much. But I had no idea we'd be going from the typical new-parent kind of worrying about things like colic, weight gain, sleeping etc to being thrust into knowing which signs to watch for in the event of a seizure, or that we must take her to a particular children's ER in the event of an emergency from the VLCAP situation.
And on the breastfeeding front, I hired a lactation consultant to come over last night. Ever since the news of the genetic test results, Sammy hasn't been latching. I figured she could sense my stress. She roots really well, hops on, but then gives up after a few seconds after attempting to latch. We've been frustrated and have been supplementing with formula while I pump. Despite that, my supply has been growing and the LC was pleased with where I was at with it. And as far as the newly developed latch issue, it turns out that we just have to entice her with a little milk on me first before she latches and she will get going on it! The LC said that once we introduced bottles, she got used to immediate reward with the milk coming out. On the breast, she has to work for it and has gotten impatient so gives up when nothing comes out in a suck or two. Why work for something when it comes out so easily from the bottle? T his baby girl is just too smart for her own good. :) I had no idea how intelligent such a tiny little baby could be, but I'm learning every day!
We weighed her and she's finally gaining weight and her jaundice has all but disappeared. We also have clear guidelines on how much she should be eating every day - something we've been clueless about. We've also rented the LC's very sensitive scale that can tell how much she's consuming. I feel in control of breastfeeding again and it's a really wonderful feeling. I have no problem supplementing or using formula if we need to go there, and still need to top her off from time to time, but I am so glad we are back on track with it.
I'm well rested today, on my BP meds and feeling better, and I hope to finally tackle her newborn pictures to share with you all.
Again, thank you for all of the support and prayers, and please continue to pray that we aren't in the 5% of these screens that are not false positive after all. I still do worry.