Tuesday, April 26, 2011

April 26th- 27 Days Old

Well our sweet girl is doing better! By Easter Sunday they had taken her feeding tube out! Yesterday we had the EEG monitor off.... but bless her heart we still have a lot of glue from the 23 electrodes that were glued on her head. We are working on the glue but it is not being cooperating with us! They have her on a seizure medicine which she will be on for a while and they will do another EEG in about 2 months to compare to the one she had last week. So now she just has her external drain and her regular monitors. She is doing much better and seems more like herself the past two days however there is a large amount of blood that is draining with her cerebral spinal fluid. We really don't know why this is and our prayers right now are that this will start to clear up soon. Last Thursday was the first final negative culture so if the fluid will start to clear up, she could get a new internal shunt as soon as a week from Thursday. She has also been very grumpy today. We are not sure if it is because of pain in her head or her belly. She has been on a large amount of antibiotics for the past week so I am sure that is hard on such a small belly. Overall she is better today than she was a week ago... and that is a blessing. I see blessings daily. I ask for all of you special people who have kept Samantha in your prayers to pray for a little boy named Carter who is in the room next to us. He is 6 months old and the doctors are telling his family that he might only live to be 2 years old. I can't even image what I would do if I were being told that about Samantha but once again I know that miracles happen every day and doctors are left scratching their heads. God is still in the miracle business and God answers prayers everyday. I am asking anyone who will... please pray for this sweet child and his family. Hearing about situations like this I can't help but feel so blessed by the fact that Sam is doing as well as she is. Being here is very humbling and if you just open your eyes.... you can see blessings everywhere. Again.... We so love you and thanks for your prayers and support.

Friday, April 22, 2011

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!

Wednesday, April 20, 2011

April 19th- 20 Days Old

So the last few days of Samantha's Journey has been tough. We were finally able to come home from the hospital about 10 days ago and we only had a few minor problems until this past Saturday night. Travis had been on call and had worked most of the night on Friday and all day on Saturday so it was just the two girls home with me on Saturday night. I was feeding Sam and when I went to burp her I noticed that the side of her head where the shunt is was soaking wet. I first thought that she was just sweating on that side until her whole head dried up except from the shunt site behind her ear. As I was watching it I realized that her site was leaking clear fluid. After calling the doctors they told us to go to the ER at Baptist. On our way down to the hospital I was really upset with the thought that we would be sitting in an ER waiting room with all kinds of germs on a Saturday night. I asked Travis to pray with me that they would be able to get her back quickly so that she was around a very limited amount of germs. To our surprise there was a Children's ER at Baptist. When we got in they told us that it had only been open since Monday. WHAT A BLESSING! We were sent straight back and had several tests done. It is very hard to watch your infant child being stuck for an IV several times with them screaming. Then they did X-rays and an MRI. They determined that everything was okay and that it might have been a pocket of cerebral spinal fluid left from the surgery and glued up the spot. So we went home about 5 in the morning thinking that everything would be okay. It was until about 11 o'clock on Sunday night. She got extremely fussy and starting running a low fever. I woke up Travis and we decided to watch it. After it kept going up we called our doctor again and we headed down to the ER. At first they didn't think it had anything to do with her shunt.... then a few hours later a test result from the night before came back positive with bacteria cultures in her cerebral spinal fluid. The next thing I know they were moving her up to surgery to get the shunt removed. So that is where we are now. They removed the first shunt, added an external drain and a central line. Right now her cerebral spinal fluid is getting drained from her brain into a bag that has to be level beside her head. There is a manual valve so when she gets raised above a certain level it has to be stopped so all of her cs fluid doesn't run out of her head. They are taking cultures on this daily and she is getting pumped with a massive amount of antibiotics. Once they get a negative culture back, they will wait for two weeks and then they will place another internal shunt. So we are here at the hospital for at least 3 weeks. Yesterday morning we had another scare because the infection caused her fever to spike to 103.4 and she actually had a seizure that was due to the fever. She has now been 24 hours without a fever but she has been on Tylenol and Motrin constantly. The hardest thing is that we are limited to the times we can hold her. It is very hard to watch her just lying there in bed not being able to pick her up. I am praying that we can get this infection cleared up quickly and that her new shunt will not have any problems. I am also praying that we will not need to put a second shunt in the 4th ventricle. This was something we have been waiting and watching and will be for the next several months. If she has to have a second shunt placed.... it is just a higher risk of infection and doing this routine once again. Thanks for all your prayers and support for our Sam. We are trying to count our blessings each day to keep us grounded and in check. You are all part of the blessing that we remember each day. I am so thankful for Samantha's Prayer Army!

Tuesday, April 5, 2011

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!