April 5th- 6 Days Old

Well God is good and He still is in the miracle business. We have made it through some major bumps. When I looked forward to Samantha's arrival there were markers that she needed to get through that I had been worried about for a long time. The first was delivery. She came out and had no major breathing problems. Her weight was 7 lbs. 8.3 oz and that was at 37 weeks. Her head was close to what it should have been and you had to look close to see that it was slightly larger than what it was suppose to be. That was marker number one for me... get her here and have her be stable. The second was her shunt. The neurologist gave us the option of one shunt or two the morning of her second day. His recommendation was to do one shunt now and watch the 4th ventricle to see if and when the second shunt was needed. He wanted to get the top ventricles drained so they could do an MRI to see if the 4th needed to be drained right away. So on her second day she had surgery on her brain to drain the extra fluid. Surgery was a success and even though the 4th ventricle has a significant amount of fluid, it is not causing pressure at this time and could potentially fix itself. To put a shunt in this area is a more dangerous surgery so our prayers are at this time that God will drain this ventricle and that a second shunt will not be needed. We will be watching this for the next few months to make that decision. Sam made it though surgery very well with only a few breathing problems the night after surgery. The shunt business was our second marker. The third marker was getting her to nurse. She has started nursing and was doing so well that she moved to a step down unit yesterday with the possibility of going home today. This morning we got news that her weight had gone down and her sodium and bilirubin had gone up. So we stayed. Tonight she was dropping off in her feeding, had a few high temps and the area where her shunt is was red and irritated. So they ran a large amount of tests. I hated to watch her scream while they took 5 vials of blood and collected urine from her. She is such a trooper for going through so much so soon in life. Most of those tests came back with good results. We did see another jump in her bilirubin so she is quite the glowworm tonight with a biliblanket on her stomach and one on her back. The goggles she has to wear are pitiful, yet adorable at the same time. She also was put back on an IV tonight. We were told tonight that we would not be going home tomorrow either. This really is not a major problem for us because we don't want her to come home until she is ready. It has been hard on Gwen not being able to see us or Sam for several days now. Please pray that she starts doing well again. The ACC has been confirmed with the MRI that the fibers are not there but there is a very thin track of fibers other than the Corpus Callosum that might have a more positive effect for Sam. Time will tell. Time will also tell what delays she might face because of the Dandy Walker Malformation. These things don't bother me. I can handle Sam doing things at her own time. I just don't want her to have to suffer any pain or have major medical problems. Thanks for all your support. If you have posted on my fb page, sent a message or called I have checked messages. It has just been too crazy to get back to everyone. WE CAN'T THANK YOU ENOUGH FOR PRAYERS. Sam doesn't have a few prayer warriors... she has an army! God has been better to us than we deserve and we praise Him for the mighty things He has given to us and done in our lives. Here are a few photos of our little miracle!

Samantha Grace

Sam and her bili goggles!

Gwen and Sam!