Thursday, July 22, 2010

Not so good news...

Well we had our level 2 ultrasound today at SMMC with Dr. Lu. It was such a long ultrasound, it seemed like they would never be done, it was much longer than the first level 2 ultrasound we had. Our little Nikolas seems to be pretty sick. He has bilateral solid renal masses and a small cortical cyst on his left kidney. Basically, tumors on his kidneys and a cyst on the left kidney. His heart is also enlarged because of septal wall thickening and ventricle wall thickening. It is taking up 60% of his chest cavity, were a normal babies heart would take up 50% or less. Also, one of the ventricles in his brain is dilated, which the doctor could not determine for sure why this was happening. Dr. Lu did some research with all of these symptoms and came up with a probable diagnosis of Tuberous Sclerosis. He said he is a little more than 50% sure that this is what Nick has.
Here's a definition of TSC:

The disease affects some people severely, while others are so mildly affected that it often goes undiagnosed. Some people with TSC experience developmental delay, mental retardation and autism. However, there are also many people with TSC living independent, healthy lives who enjoy challenging professions such as doctors, lawyers, educators and researchers.

He will need an MRI to determine if he has tumors in his brain, which would give us a definitive diagnosis of TSC. It is possible that we could do the MRI before he is born but they may not want to do it until after he is born.

I am devastated. Even if he doesn't have TCS he has all these growths all over his little body and if his heart continues to grow it could cause it to stop working even before he is born. I don't know what to do, I'm a mess. It just scares me that these growths happened so fast. When I went for my 32 week ultrasound, which was a biophysical profile, they did not see anything at all. I don't know if she missed it or he wasn't having issues then. I know I need to put it in God's hands because I obviously cannot control this but this is so hard. I just want him to be healthy. Please continue to pray for him, I know God can do miracles and a miracle would be so wonderful right now.

I will continue to update as we get more information.

Wednesday, July 21, 2010

Latest news

Well some other issues have potentially come up as of yesterday. For probably about a month now I had been getting these feelings in my belly like the baby was possibly having seizures or just really jerky movements that were not just the normal kicking or hiccuping. For awhile it would only have maybe once or twice a day. I kept pushing it aside, hoping it was nothing. I had done a search on google to find out if any other women had felt the same thing, and if they had what the outcome was. Apparently, it is more common than I thought. There were quite a few posts about women feeling the same thing and their doctor's or midwives told them it was nothing, or it was just the baby's nervous system developing or it was just their uterus having a spasm. But yesterday I kept having the feeling, my whole stomach would shake, it happened more times than I could count. I started to get really scared and I felt like something just wasn't right. So I called my doctor and she immediately had me come in to do some monitoring. We first did another biophysical profile ultrasound and the technician wasn't able to catch any of the abnormal activity during the scan-of course! Next, we did a NST, or non-stress test, were they hook you up to a monitor that records that baby's heartbeat and contractions, if any. I am pretty sure I felt the abnormal movements during the test and nothing abnormal showed up on the monitor. Yay! My doctor couldn't really tell me for sure what it could be, but because of his cleft issues they monitor me closer. (Babies with cleft's are prone to other deformities and abnormalities.) That was a relief, or so I thought.
While the technician performed the ultrasound she noticed some swelling around baby Nick's kidney's and his heart was 30 degrees different than what it normally should be. Wow, that was hard to hear, especially because nothing ever came up on any of the other ultrasounds. She recommended that I have another level 2 ultrasound to find out more information. Really, a level 2 ultrasound is just a more extensive ultrasound. They look at things longer and closer but they are not much different than a regular ultrasound. My doctor didn't seem too worried, but she did want me to get in before the end of the week to have the ultrasound done. So my appointment for the level 2 ultrasound is tomorrow at 1 pm. She also scheduled me to have weekly ultrasounds and NST's. So now I am high-risk. Booo! lol
I have put the whole situation in God's hands. There is nothing I can do, there is no reason to worry. God is in control and I need to continue to remind myself that. Overall, I really do feel blessed, with the millions of other things that can go wrong, my baby is pretty healthy and his cleft condition is correctable with surgery. Why would I not be joyful that God has given us another little boy? He has trusted us to take care of this beautiful little boy and I am so grateful for just the opportunity.
Please pray for our little boy and that the ultrasound tomorrow will look good and that God will continue to grant myself, and Joe, peace in this situation.

32 week follow-up ultrasound

So at my 32 week appointment we did another biophysical profile ultrasound and we were able to see our little boy's face even better and really get a good look at his cleft. He wasn't trying to hide his face this time at all!
When the technician was doing the scan she said she was pretty sure she could see some palate! What! Really! That is amazing! I was really sure that he would have a complete unilateral cleft palate! Of course, there's still a chance she was mistaken but just the thought of him having some palate is amazing! I think you might actually be able to see some of the palate in one of the pictures.

Baby Nick's 1st 3D ultrasound

3D ultrasound!

I really wanted to have another 3D ultrasound done, just like I had with Brianna and Benjamin. So I scheduled to have one done at 28 weeks. We were excited to see our little boy and I really wanted to see his cleft to be able to familiarize myself with it and really see how severe it was.
Well the little booger would barely let us see his face! He kept smushing his face into his placenta and putting his hands and arms in front of his face. We were kinda frustrated because 3D ultrasounds are not covered by your insurance, you have to pay for them out of pocket because they are elective. But we did get a couple shots that weren't too bad and allowed us to see his face a little. The pictures should be on the next post!

Meeting with the Cleft team

So the next thing we did was setup an appointment at Children's Mercy with a cleft team or some call it a craniofacial team. There were actually a couple of teams and they just randomly assigned us to one.
When I scheduled the appointment they told us we would actually meet with the whole team in one visit. The team would consist of a pediatric surgeon and his/her nurses, an orthodontist, a speech pathologist, an audiologist, an otolaryngologist, a social worker, an occupational therapist, a nutritionist, a pediatric dentist, an prosthodontist, I think that was all. . . So we were expecting a very long first visit!
We met with the team but not everyone that is going to be on his team but the main people at least. The surgeon was very nice and tried her best to explain stuff to us but without the baby actually being there it is very hard to give any type of definitive answers. . .The occupational therapist gave us some sample bottles that babies with cleft's typically use and the nutritionist explained as much as she could about issues that babies with cleft's have including the possibility that he would not be able to directly breastfeed. This is probably the hardest thing for me. I breastfed both of my other two kids almost exclusively for at least a year and now I wasn't even going to be able to? Wow, that was hard for me to accept, especially because I still want him to have breast milk and to give it to him would be a lot of work. So unless he has most or some of his palate he won't be able to directly breastfeed and I will have to continuously pump and feed him through a bottle. I am not looking forward to that! But I know it's the best thing for him so I will do it regardless.
The surgeon also explained to us that typically he will have his first surgery to repair his lip around 4 to 6 months old. They generally correct the palate around 12 months old. But depending on the severity of his lip and palate he could need other surgeries to correct his gum line and/or different parts of his palate.
Overall, I really liked the team we met with at Children's Mercy and felt like this is the best choice for our little boy. Brianna had gone through Children's Mercy for a cardiac catheterization and I was very happy with the way things went for her at the time. So our next step with them would be to make an appointment after the baby is born to get more answers and setup dates for surgeries.

Nick's anatomy scan at 18 weeks

Baby Nick's story

I decided to start this blog to keep all our friends and family updated about our little Nick. His due date is August 21, 2010 and we have a c-section scheduled for August 13, 2010.
When we went for our 18 week anatomy scan the technician was unable to see anupper lip or palate on our little boy. I was initially optimistic because I knew it could be fixed and if this baby were to have some defect this would be probably one of the best to have....that doesn't sound right now that I look back. But in reality it is treatable with surgery and depending on the severity of any palate issues he might not have any other issues at all. Joe was dismayed, he wasn't expecting this, no one was. I don't think he wanted to believe it until the level 2 ultrasound confirmed it. But when we went in for the level 2 ultrasound we were able to see Nick's face (in 2D, which makes him look like an alien) which clearly showed a large gap above his lip. Joe looked devastated. But he remained positive and we knew that God was in control. When we found out at the initial ultrasound I accepted however God made Nikolas and I did my best to give God control of the situation.
The doctor that read the level 2 ultrasound told us that my regular ob/gyn would do another ultrasound at 32 weeks to make sure my amniotic fluid levels were okay. Apparently baby's with cleft palate issues can sometimes have a hard time swallowing which would cause the fluid levels to be high and can lead to premature birth. He also gave us the number for the Cleft team at Children's Mercy Hospital.
I tried to look up information on the internet but seeing all the pictures was too hard and I haven't looked again, plus you never know what information is actually reliable.