Saturday, January 21, 2012

From The Start

                                                           

Our story started when we were 20 weeks pregnant. We had just found out we were having a boy and we were elated. After the ultrasound, we had received a call but I missed it and the office was already closed. I tried to just put it in the back of my mind for the weekend that it probably wasn't important. Monday morning I was getting the girls ready because we were going to the pumpkin patch. While I was making the lunches I received a call from our Dr telling me that our precious baby boy had fluid on his brain and we had to go for a level 2 ultrasound to see what was going on more accurately. Luckily my mom and sister were already around the corner from my house. I completely lost it and just felt so helpless and scared. You always pray it won't happen to you. But it was real and it was happening. Something was wrong with this precious life the Lord had given me to carry. We had no idea what to do, except turn to the Lord for help because He is the one who is in control and only He can heal. We asked for prayers from everyone, our church body prayed over us and anointed me with oil as we prayed for healing. 
When I was 21 weeks before I had been seen by the specialists, I went into the ER with what I believed was kidney pain. They hooked me up to the monitors and I found out I was actually having minor contractions. The nurse told me a lot of times when babies have Hydrocephalus (which is all we knew about at this point) they sometimes won't make it to term. This was so emotional for us. She gave me a muscle relaxer and sent me home. Luckily it was Saturday and my amazing husband and younger sister were there to care for me and help. I slept the entire day, cried, and prayed. It's so hard feeling your baby kick  and move around in you, but not knowing if they are going to live for much longer or what is really going on.  Praise the Lord though, I did not lose him. And I still get to feel his kicks everyday. 
Our first appointment we were told they could not see much of his brain due to the fact that there was so much fluid in it, and that he potentially has Spina Bifida.We were asked to consider termination and we declined, knowing that each baby is a gift from the Lord, no matter how hard the circumstance may be. We were also asked to do a Amniocentesis. At this time we said no. Our next step was to get a fetal MRI done ,we waited a week to hear back from insurance to see if it was covered. They said no, but if we do it at a place in our town they would then cover it. This was actually good news, I didn't have to drive way far away and I could get it done that very day. I went in for the MRI laid on my back for and hour and half (not the most comfortable thing in the world). Unfortunately, the MRI showed pretty much nothing new. They couldn't get a good look at the spine and then they argued if there was even a brain at all. They all agreed that yes he has a brain, it is just very very full of water. The only part of it you can see is the rim and the rest is gray (which is the water).
Those results took what felt like forever to get back. I believe it was 4 or 5 days. So the MRI was basically a waste of time. Next appointment we had was with a Dr who did a very detailed ultrasound (she was amazing). She was able to see that he did have Spina Bifida and the location on the back where his lesion is,  she said it looks low L4-L5.  Also same thing with the water on his brain. Just a lot of fluid which is called Hydrocephalus.  She again said it would be wise to consider getting the amniocentesis done to rule out other things. One of the big ones being whether I would have a c-section or not. We had been praying about it, and we decided to go ahead and go forward with it. It is definitely not something I would ever like to do again. I was very worried because of all of the risks involved with getting the amnio done. I had thoughts like if I lose the baby it would be my fault because I had this done. In the end though we were reminded that whether we lost the baby or not this baby, is still in the Lord's hands and the decision is ultimately His. 
I think it took about 10 days to get the results of the amnio. The results were pretty good. Nothing was found other then what we already knew. Because of his back being open he is spilling protein into my amniotic fluid. The protein level came back high. So we now knew for sure that he does have Spina Bifida and that I would definitely be having my first c-section. I was relieved though that nothing else came back as seriously wrong. Praise God. We then went into asking questions more about fetal surgery. Which is where they remove your uterus to close the baby's back, then put it back in. We prayed and prayed that the Lord would guide us in this decision because it would mean that remainder of pregnancy I would be on strict bed-rest, and have to stay in San Francisco near UCSF where they would have performed the surgery. We would probably have to move in with my parents.  We didn't have to worry though because by the time we thought of it, it was too late and we could not do the surgery. This is ok though, we have peace about it because again the Lord is in control and if it had been His will for us to have this done he would have provided a way for it to be done.  I had my mom and everyone to remind me of this.
After all those appointments I continued with my regular ob visits once a month and went to the perinatologists every 4 weeks for a ultrasound to make sure the fluid in his brain was not increasing. It has yet to increase praise the Lord.  About 3 weeks ago my regular ob dropped me as his patient and I am now under the specialist care only.  My last ultrasound everything was still the same but he does have fluid on his kidneys. The Dr told us in the scheme of things this is not a big deal. I have been going to NST (non stress testing) twice a week. Which has been hard because it is a long drive for a test that takes 20-30 mins. They monitor the baby's heart rate and check for contractions. They need to see so many fluctuations in his heart rate. So far he has passed with flying colors. I still have contractions but they have not led to labor.  
It has definitely been a bumpy journey but we are so blessed by everyone who has been there for us and helped us along the way. My mom has been so amazing and has gone to almost every appointment with me and even drove me to a lot of them since we only had one car for a while. She has such a good heart and I am so blessed to be able to call her my mom. My husband who even when there has been times in this pregnancy when I didn't know HOW I was going to go 19 more weeks and I know this was all just as hard on him has encouraged me to keep seeking the Lord and reminding me that He is in control not us. We've also had a lot of support from our church with prayers and meals, they have been so amazing.  I can hardly believe that the time is almost here. He will be delivered February 9th (his due date was the 24th) at 12:00. He will require surgery on his back the day he is born and a surgery to place a shunt (a small tube that goes from the brain to the stomach to drain the fluid). We are not sure how long we will be in the NICU we have heard anywhere from 1-4 weeks. We are praying for 1-2. We can't wait to meet him and neither can his sisters!