First, LEONORA IS HERE!! YAY!!!!!!!! (I know you all knew that already but whatever!) After 41weeks and 6 day she was born at home, in the water, on November 21, 2012 (a few hours before Thanksgiving... Go figure. My kids ALWAYS miss the holidays by a few hours!) at 10:26pm after a 2 hour labor! She was 7lbs 2oz and 21 1/4 inches long.
Since then our lives have been a roller coaster to say the least. She was born full term (obviously) but had some premature qualities (which I'll write about when I get the time to write about her birth story). Nobody could figure it out and after a few hours of not being able to regulate her body temperature we decided to take her to the ER to find out what was going on. We all figured a few warming blankets some monitoring and we would be headed home. The Dr.s said lets watch her for 48 hours and then we should be good to go. 48 hours turned into five days. Five days into a week and a week into four weeks. She has been put through every test imaginable and every scan there is. Everything came back normal until one day her bilirubin levels went back up after a round of photo therapy. Thankfully this caught the Dr.'s attention and he decided to run some labs on her thyroid as extended jaundice levels are a sign of hypothyroidism. The results came back quickly and we were excited (weird I know) to hear that they were abnormal. FINALLY some sort of clue as to what was going on and why she couldn't come home. He informed us that they thyroid results weren't the part that was abnormal but the results from the pituitary gland (what controls your hormones... you would be surprised what gets affected when you lack hormones) were. He was going to transfer us to Tampa General Hospital where there was an endocrinologist who he had been contacting about Leonora.
It was SO hard to see her get loaded up into the little box thing that they use to transport the babies. I knew then that we were in for a long journey. Luckily when we got to Tampa General they already had a clue as to what direction to look. They started on the hormones they knew she was lacking and we had a pretty decent turn around. She was already starting to act like a different kid. Better and better each day.
She is still doing really well. We have taken one step forward and what feels like a MILLION back but Nathanael has been here to assure me that its only one step back or sometimes even a half of a step. Right now we are still working on her eating properly. She has some congestion and we arent sure why which is making it a bit difficult for her to breathe and eat. We started her on a special bottle that seems to be easier than breast feeding (Which we werent having so much of an issue with as it was we werent thinking she was getting enough to eat due to her suck not being strong.... muscle issue due to hormones which it getting better) so we will actually be getting rid of the bottle and going back to the breast (Dr.'s recommendation which made me really happy... At this point I just want her to eat LOL). So, the next couple of days are really going to be crucial. I will probably be living, breathing, eating hospital (Like I havent been already LOL). I will probably be staying the night there to do every feeding by breast and hopefully see some sort of turn around. She will be seeing one more specialist about her congestion to see if it is caused from reflux or if there is an actual blockage there (which would also mess with feeding).
There is also a possibility that she will go home with a G tube (a feeding tube that goes directly into her stomach but is not permanent). I'm saying this so people aren't shocked or upset when they first see her and she has a tube connected to her. The Dr has already said we are going to try everything before a g tube get placed because he doesn't want to rush her on anything but he also knows that the place she will heal most is at home. He said that it will most likely be another week or two in the hospital depending on the results from the specialist and how she does with feedings. Either way she is going to be fine. We all will be (Her big sister is a TROOPER!! She has done nothing but amaze me through this whole thing... I'm blessed with some pretty amazing girls!). Its our new normal. And that's okay because shes her own person and this is her story.
Thankfully it was caught early on so there is no permanent damage to any of the organs that run off the hormones she was lacking. She will be on them for the rest of her life as there is no reversing this or making her pituitary grow.
The cause is unknown and isn't able to be detected in utero. In fact they grown normally while inside and are usually term babies with a normal birth weight and length. It is a rare condition that occurs in 1 out of 100,000. We are just that lucky! ;)
Other than that shes healthy! She is a beautiful little girl who is extremely strong! We are so blessed and thankful to have her in our family! Its going to be a long journey and I know that this is just the beginning but I wouldn't change it for the world.
41 weeks and 6 days..... Not 2! It makes a difference lol
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