We have a date!

Today we went to have our ultrasound and non stress test done at our perinatologists office. We were very anxious about this appointment because this is where we got Tommy's diagnoses and the doctor is somewhat of an alarmist.
I love getting ultrasounds there because I get to watch them the whole time and they always take some 3-D pictures. Tommy's estimated weight is about 5lbs 14oz. He is continuing to gain weight at a steady pace which is good.
Once we were done with the ultrasound and NST we waited to meet with the doctor. We had lots of time in the room to think about all of the possible what-ifs. Tommy and I are not very patient when it comes to finding out any news. After what seemed like hours we got to meet with him. He told us that everything looks as good as it can. All the measurements are the same as they have been and he believes to think that he is Macrocephalic and not hydrocephalic but will know for sure once he is here and they do a CT. He also told us that he had good muscle tone and the monitoring they did of his heart looked really good also. He did suggest that we do another amnio the day before I get induced to check fetal lung maturity but he said he would leave that decision to me and my ob.
I don't think we could have asked for a better appointment.

This afternoon we had an appointment with my doctor. We talked to him about our morning appointment and also about banking Tommy's cord blood(which we have decided to do). We also set a date to induce!! I will go to the hospital the night of January 17th and will be induced on January 18th!! Since I will be considered full term by the we will not do an amnio.

Tommy and I are so excited to have a date set. I am sure these next couple of weeks are going to bring a ton of excitement and anxiety about the future. Please continue to pray for our sweet baby boy.

Merry Christmas

I hope everyone has a very Merry Christmas!! We started off Tommy's Christmas vacation with good news. We had another doctor's appointment today and everything looks the same which is good because we don't want anything to increase or get bigger (head size and the size of the ventricles). As of right now they will probably induce in 3 weeks unless something changes or baby Tommy decides to come on his own. We are hoping and praying that we don't have a Christmas baby. Our doctor is also going to be out of town the first week in January so we are hoping Tommy will be patient and wait for me to be induced.

Next week we are going to the perinatologists office for our ultrasound because our sonographer will not be there. We have mixed feelings about this because he is an alarmist but he is also extremely smart so I guess we have to take the good with the bad.

Thank you all for your continued support and prayers.
I hope everyone has a Merry Christmas!!

Good News

Today we went to see the doctor for our weekly appointment. He told us that he talked to the neurosurgeon, Dr. Boydston, and that he said he rarely has to do emergency shunt surgeries so he thought it would be ok if I delivered on Macon. We are so excited about this!! Our doctor is going to call Boydston when we decide on a date to induce (if Tommy decides not to come early) and they would set us up an appointment so Boydston can examine Tommy and then we will go from there about deciding when to do the surgery.
I am still having contractions but he said that it is possible that Tommy could stay put until January(fingers crossed). His head size has not increased in the past week which is great because if it gets bigger they may have to induce sooner. Also the ventricles in his brain are still in the normal range although they are on the high end of normal.

We are so thankful that this appointment went well and hopefully they will continue to go smoothly.
Thank you all so much for your prayers and support.

More Contractions

I am starting to believe that baby Tommy is just like his daddy when it comes to always wanting to get somewhere early. Hopefully he will listen to his mommy and stay put for a while.

On Wednesday, Tommy and I went to the doctor's office because I was still having some pain. They hooked me up to the monitor to see his heart rate and to monitor the contractions. After about ten minutes the nurse practitioner came to look at everything and decided to show our doctor to see what he suggested. She came back and gave me a coke and granola bar to get baby Tommy moving more (this was my first caffeinated drink in 8 months, I decided I would give up caffeine because I couldn't give up sweets). After a few minutes he was all over the place and my contractions were more intense. She came back in the room to check me and told me that I was a good centimeter dilated. Our doctor then came into the room and started me on some medicine to take 2 or 3 times a day to hopefully stop the contractions. He also gave me a shot of steroids just in case baby Tommy comes any time soon. I am hoping that the epidural is a lot less painful than the steroid shot!

Today we had a scheduled appointment. I was glad for that because I wanted to see about the contractions since I can't feel most of them. We first had an ultrasound to check the ventricles in his brain and to see if there was anymore fluid. So far it hasn't increased since last week. But the doctor told us that it may not change weekly so we will still continue to watch and measure every week. Then, we had the non stress test done on the baby. This was with the same machine they used yesterday and Sunday. So I was able to see if I was contracting. The medicine is working so far because I think I only had some small ones. Praise God!!!! I am hoping that we can go until our next appointment, on Wednesday, without anymore scares.

Thank you all so much for the prayers and support. Please keep praying for baby Tommy and that he will be patient and wait before making his appearance.

Sunday Excitement

I was so excited about today because I had another baby shower. This was my last shower so I was really excited and couldn't wait until shower time.
When I woke up this morning I began having some mild cramping so I decided to call the doctor who was on call. He told me just to take it easy and if I continued to have cramps I could go to OB assessment or go into the office tomorrow morning. So I just tried to put it out of my mind and concentrate on the shower and how much fun it was going to be.
At the shower the pains were mild but were still there and my stomach was tightening. Once the shower was over I called Tommy and he met us at my parent's house. We all four got in the car and went to the Medical Center just to be on the safe side. Martha and Jimbo met us down there.
Once I got into assessment they hooked me up to the monitor. After about ten minutes they told me that I was having contractions. The nurses told me that I was having them about every three to four minutes. I had no idea that I was having that many. So they gave me a shot to stop the contractions and gave me an IV of fluids. Once the medicine started to work my contractions stopped. The nurse then checked to make sure I hadn't dilated, which I hadn't. After I had finished the fluids they discharged me.
I am so glad that baby Tommy did not come tonight! Hopefully he will wait until whenever the doctors decide to induce me. Lately there seems to never be a dull moment at our house. So until our next doctor's visit I am going to be as inactive as possible.

Weekly Appointments

Today was the start of our weekly appointments with our OB. They will consist of an ultrasound, and a non-stress test. Tommy's head size this week was measuring about 3 to 4 weeks ahead which is about the same as it was on November 20th. Everything else was still measuring within normal range which was a relief.
After the ultrasound we met with our doctor to discuss delivery options. As of today I think we are planning to deliver in Atlanta because he thinks Tommy will have to have shunt surgery soon after he is born. Our doctor does not want to add anymore stress to Tommy by having to have him transported to Atlanta after birth and that way I could be with him as well.
I am a little scared about not having my OB, who I absolutely love, deliver me but I will do whatever is best for Tommy.
We both left his office today feeling more hopeful about the future. It has been so hard for me to realize that I cannot control this situation and that I have to trust in God and that he will take care of us.

One step forward two steps back

On Friday, November 20,2009, we had another appointment with our perinatologist and a pediatric cardiologist. We had a lot of anxiety before these appointments because with Dandy Walker other abnormalities are likely.
Our first appointment was with our perinatologist. We had another ultrasound done when we got there. Baby Tommy does not like having ultrasounds done. He kicks and squirms the whole time. But during our last ultrasound he gave us a thumbs up and we were able to get a picture of it. He made our day!!
After the ultrasound we expected to see the doctor but he was not in the office. The sonographer told us that he would just see us next time.
That afternoon we went to the pediatric cardiologist. The doctor was in the ultrasound room with us the whole time so he was able to ask of millions of questions during the fetal echo. He told us that everything looked good and that he did not see any "major" problems with his heart. He also told us that once he was born there could be some small problems but if there were he would most likely not need surgery. Finally we had some good news!!! We could finally breathe!
Two hours later I got a phone call from the perinatologist. I knew it couldn't be good. He told me that all of Tommy's measurements were normal expect his head size. I was 29 weeks pregnant and his head was measuring 32 weeks. So much for being able to breathe.
He continued to tell me that they would probably do another amnio to check fetal lung maturity in case they needed to deliver early. He then told me that he thinks that Tommy is developing Hydrocephalus. Which means he will probably have to have a shunt put in soon after he is born.
Once again I feel helpless. I hate the our baby boy is going to have to go through this. I wish I could take all of this away from him and any pain that he will have to go through. We are constantly praying for God to heal our baby. I sure hope he is listening.

Pediatric Neurosurgeon

On October 22,2009 we went to Atlanta to meet with our pediatric neurosurgeon, Dr. Boydston. After waiting for a couple of hours we finally got to meet him. He was well worth the wait! He was extremely nice and understanding. Dr. Boydston was able to make us feel more at ease about the surgery that he would have to have if he developed Hydrocephalus. He told us that he would only do the surgery if it was absolutely necessary because there is a high rate of having a shunt malfunction or needing a revision.
He was able to tell us more about Dandy Walker and that Tommy has a 66% chance of having developmental delays but to be cautiously optimistic that they would not be severe.
Once Tommy is born Dr. Boydston wants to see him every 3 months for the first year unless he needs surgery before then.
I am so glad that we got to meet Dr. Boydston and that we feel comfortable with him being our baby's neurosurgeon.
Some days are a lot harder to get through than others. I am trying to keep myself busy by doing things to get ready for his arrival. I am so ready to meet him but I am also so scared about what the future holds for our baby.

Some relief

On October 8,2009 We had our second appointment with our perinatologist. When we got there we had another ultrasound to see if anything had changed over the last month. Our doctor told us that everything looked fine and that he did not see a VSD. Praise God!!! He told us as of right now the only abnormality he could see was the Dandy Walker. He then told us that there could be some problems that he can't see on an ultrasound. He also told us that once Tommy is born he will most likely go to the NICU so they can run tests and also do a CT. He seems to think the only reason Tommy may not come home with us is if he has problems breathing and eating.
At that point Tommy had not developed Hydrocephalus. About 65-85% of Dandy Walker children develop Hydrocephalus sometime through their life. Our doctor seems to think that he will not develop this in utero.
We have seen God's work through all of this. He has given us strength and hope. Tommy has been sent to us for a reason and I cannot wait to see what God has in store for our family.

Second Opinion

On Friday September 18,2009 we went to Atlanta to get a second opinion on the diagnoses. We met with Dr. Feng, another perinatologist for an ultrasound and consult. After the ultrasound he came in the room and looked over the pictures and asked us what our doctor in Macon had told us the diagnoses was. When we told him our doctor said it was Dandy Walker Dr. Feng told us that he agreed. He also told us he may have seen a VSD which is a hole in the heart. That was the first time we had heard about anything being wrong with our baby's heart. After hearing this news we began to ask questions most of which he told us we needed to ask our pediatric neurosurgeon and cardiologist. He did not seem to know as much about Dandy Walker as our perinatologist in Macon.
When we left his office we felt like we had just heard the diagnoses all over again. We once again had to leave a doctors office without many answers. It has been so hard to keep hope and have strength when this disease is so unknown. God has blessed us with an amazing child that is going to teach Tommy and I so much!

I am starting a blog to have something to share with our first born Tommy. My pregnancy has been what seems like a never-ending rollercoaster. We found out on May 29,2009 that I was expecting our first child. Tommy and I were so excited! We couldn't wait to tell everyone the good news. I had always wanted to be a mommy and I couldn't wait to start this new adventure with Tommy.
The first three months were pretty uneventful. We did everything by the book because I wanted to know that if something happened that it wouldn't be because of anything that I did. On September 10,2009 we had our appointment with our OB to have an ultrasound to find out the sex of our baby (we already knew it was a boy because we went to First Glimpse). After the ultrasound we waited in a room for the doctor which was taking longer than usual. Once he came in the room he told us that he had seen extra fluid in the brain in his cisterna magna. He told us he was not sure what it was because he had never seen this before. He then told us he wanted us to go see a perinatologist to have a more in-depth ultrasound.
He got us in to see the perinatologist within the hour. I was not sure what to think at first but since he was able to get us in so quickly I knew that it was serious. Once we got to his office we had another ultrasound that seemed to last hours. They measured and checked everything inside of our baby. Once they were finished they sent us to a room to wait for the doctor.
When he came in the room he began by telling us that what our OB had seen was a sign that something somewhere else was wrong. He then proceeded to tell us that our baby has Dandy Walker. Tommy and I had never heard of this before. He then told us that Dandy Walker is a brain malformation that affects the cerebellum and the fluid filled spaces around it.
Dandy Walker is very rare. It occurs in about 1 in every 5,000 births and the severity differs from not being affected to being severly disabled. There is no way to tell how severe he will be until he reaches each developmental milestone. Dandy Walker children are usually delayed in there developments and require many different types of therapies.
After explaining to us what DW is he told us that chances were that there could be other abnormalities and that our baby may not make it. He then told us we had the option of abortion (which was never an option to us). I would not and will not ever give up on our baby!!
He then did an amnio to check for genetic abnormalities. I don't really remember how it felt because I was shaking so bad from being in shock. He did the FISH test which told us within 3 days whether or not he had Downs, trisomy 13, or trisomy 18. If he had any of these the doctor told us he would not survive. We got the results back that next Monday(after the longest weekend of our lives) and were told that the tests came back NEGATIVE!!!! His survival rate had increased dramatically from what we were told. We then had to wait until the next Monday to get the rest of the amnio results back to see if there were any other genetic disorders. Those test results were also negative!!
We then began to become aware of this disease that suddenly and quickly changed our lives within a matter of minutes.