April 22nd- 23 Days Old

This week has continued to be a little crazy for our family. Since our last post, Sam's infection has gotten better with tons of aggressive antibiotics. The main problem has been that she has had a significant amount of seizure activity since yesterday. The first big seizure she had around noon was calmed down with Ativan. They then called in a Neurologist team to start keeping track of this and she ended up with an EEG to monitor her for seizure activity. She continued to have seizure activity throughout the night and the day today. After that first seizure on Tuesday morning, she has actually been on a medicine for seizures and that dose was increased throughout the night and day today. With all the extra medicine Sam has been very sleepy and not herself which has made her not eat like she was. This is the cause of the second problem.... lack of nutrition. She has got to eat in order to help her body fight the infection and get stronger. So they talked about placing a feeding tube today. Well at first I was okay with this without any reservation and then I thought back to my sick period in the beginning of my pregnancy that ended with a feeding tube. The feeding tube was the worst part. So I asked the doctors if I could get her to eat, could we hold off on the feeding tube. Well from 12 o'clock on she ate more than what she needed to eat every three hours. This happened until this last seizure at 9 o'clock tonight when she was in the middle of a seizure and it was time to eat. They actually had to give her meds to get her out of the seizure because of the length and that completely knocked her out. The doctors decided to add another seizure medication and this one will make her extremely sleepy. So the plan is to get her feeding tube put in around midnight tonight when it would have been time for her next feeding. The third problem we have been dealing with today is that her external drain has been leaking a large amount of cerebral spinal fluid throughout the day today. Her Neurosurgery Doctors have been watching and trying different things to get it to drain and not leak. The easiest way to fix this is to add a few stitches but a newborns skin is so fragile that it might not hold in the spot where there needs to be a stitch. They tried Dermabond but it didn't exactly hold. They lowered the pressure of the drain and that has helped some but not 100%. Tomorrow is another day and I once again pray that she will improve. All of this just helps to remind me of how strong my little Sam really is. Please continue to pray for our sweet girl. On this Easter weekend I am reminded just how WONDERFUL our God is! I know He can work miracles on Sam just like He did when He walked this earth. I was reminded by a dear friend the other day that it is not just the prayers that are said but the belief behind the prayers that God can fix anything. I BELIEVE HE CAN! Thank you for believing this with me!