Yesterday was a very scary day for everybody, Brielle included. Statistically with premature birth, the first 24 hours are the hours that doctors fear loosing baby the most, and we're past them. We spoke with neurology and cardiology this morning and there are still a lot of unknowns, mostly for the fact that even a "healthy" preemie isn't developed enough to really be able to make a set prognosis. The things they are seeing in her brain are concerning, but until she is a little older, how concerning can't really be determined. In other children with the same defect (lobar) holoprosen cephaly, they see things like developmental delays or maybe some motor skill delays. At this point she is just not stable enough, nor would it be very worthwhile to complete further imaging.
For the cardio side of things the VSD and DORV repair will be put off until she is not relying on these machines to breath for her.
The clouds tonight were fantastic. When I look at clouds I can’t help but imagine how soft and fluffy they are. I can almost picture myself bouncing off of them fearlessly. I said to Rick tonight that I imagine in heaven I will get to do that- I will have no fear like I do here on earth of hurting myself or my bladder giving out- (just keeping it real!) For me growing up not knowing Jesus- barely even knowing of Him, Heaven was really an unknown. I have a really vivid memory of when I was younger. I remember the house we lived in so I suppose I was around 9 and I knew my Grandma lived in heaven. She passed away when I was just 6 of cancer. Because I didn’t really understand death I didn’t get why she just couldn’t come back. Someone must of told me heaven was in the sky because when I yelled and I mean I. Yelled . up to heaven I begged Grandma to come back. I was home alone in my living room and I distinctly remember telling her that if she really loved me she’d come back.
I am so thankful for my two little guys... (which they are not so little anymore) They are both so fun, so smart and so DIFFERENT... right down to the way they look. I found this video of them and they had just turned 4 and 5. Eric was starting Kindergarten and Sam preschool. They were playing UNO with Rick and I don't think I had ever seen this video before. It is an absolute PERFECT picture of the two of them. Take note that Sam never stops moving and Eric is just as mellow as can be. That is still true of them. Also notice the YELLOW KNEE HIGHS they are both wearing (not sure if you can see Eric's)- yep those yellow Mickey Mouse knee highs were the favorite ALL summer that year- Sam more so then Eric, I have TONS of pictures of Sam with shorts on and those silly knee highs! I sure love them. (the boys well and the knee highs too)
Just some background... When Sam was about 6 months old we had him seen by a Pediatric Ophthalmologist for a blocked tear duck on his right side. While examining him the Doctor found his vision was more far-sighted in his right eye than his left. Now all babies are far-sighted to some degree, this is often even on both sides and will resolve itself in the first year to year and a half of life. At one year Sam had surgery to probe his tear duct and again his eye exam showed improvement in his left eye but not his right. At 18 months he got his first pair of glasses. We were also supposed to patch his good eye to force his weaker eye to work harder. Well after many, many attempts this has not happened. So here we are now. As of his last appointment ( Thursday the 2ND ) his sight in his right eye has worsened even more. His new glasses came in on Wednesday and so the battle begins ( again )! First battle, trying to convince Sam he should wear his glasses. I let him pick out new frames,
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