Our Story


It was early January 2012. 3am.  We had been trying to get pregnant for 8 years. We tried fertility treatments. They didn't work so we decided to adopt. We had gone through classes, background checks, and completed the home-study. We had to make a few improvements to our house, take pictures, and send them to our social worker. Then we would be all set for our info to start being shown to birth mothers. We were so excited!


On March 20th (the first day of spring) we found out that we were having a little baby boy. We are due September 2. We were so excited to find out what we were having but it came with a lot of worry too. We called the social worker for our adoption and told her what was going on. She told us that they would put our file on hold for as long as we needed and to just keep her updated. You see, there is a rare genetic disorder that runs on my side of the family. It is called X-linked hydrocephalus.  

It's also known as L1 Syndrome. Anybody can get hydrocephalus. This just means “fluid on the brain”. You or I can just wake up with this. Commonly people will get this if they have been in a car accident or had a traumatic brain injury. Ours is linked to the chromosomes. Without sounding too much like a doctor here, basically it is something that boys are affected by and are born with. It will never go away or get better. There is a 50/50 chance that girls in our family are a carrier of this disorder and a 50/50 chance that boys are affected by it. To take you back a bit into my family history with this, My Grandma had 2 sons and 2 daughters. One son passed away from this disorder shortly after birth, and the other is still here. He is as normal as they come. Out of the 2 girls, one went on to have 2 girls and 2 boys of her own without any problems. My mom on the other hand was not so lucky. My mom had 2 boys and 1 girl. The girl is me and I am doing fine. The boys on the other hand…one passed away after 9 months and the other is doing well and is a pain, just like a brother should be.
 
 We found out on the first ultrasound that our boy was probably affected. All the ultrasounds after that just confirmed it. Our lives were going to be difficult from here on out. Everyday was hard. Knowing all that we would have to deal with. Knowing our son would never be "normal". We prepared as much as we could. We toured the NICU at the local hospital. We formed a team of doctors that would be at the c-section. We planned a c-section for 3 weeks earlier than the due date.
I went in for an appointment 5 weeks before the due date. I had high blood pressure and they wanted to monitor me overnight. My pressure got better but baby Noel's heart rate dropped, indicating he was in trouble. He was coming out now! No one from our team was able to be there, but we proceeded anyway. He came very fast. They whisked him away to baptize him and check all his vitals. I went to recovery and baby Noel went to the NICU.
                                                          
    MRI taken 2 days after birth

  The dark area is all fluid. His brain is being pushed against his skull, causing his head to be abnormally large.
 I had a stuffy nose the whole time. The doctors kept telling me it was allergies. Turns out it wasn't.  

  My journal entry from June 20th:
Everything happens for a reason. For it has been granted to you that for the sake of Christ you should not only believe in him but also suffer for his sake...Philippians 1:29 I don't know why things are happening the way they are, and I am trying to stay positive, but after this week it is hard. I am so lucky to have a great husband that is right next to me every step of the way. He says we are a team and can get through anything. I feel so blessed to have so many people supporting us too. thank you

I don't want to focus on the negative but I know some of you would like an update of how this last week went for us, so here it goes.
 
Monday= Ultrasound revealed that baby's fluid increased from 2.5 and 2.7cm to 4.0 and 4.1cm. his head is the size it should be at 40 weeks. he is only 32 weeks. We toured the NICU. We also had my thyroid ultrasound and blood work read. They told us they wanted to do a biopsy. It got set up for Thursday.


Wednesday= After review of the ultrasound Doctors wanted to move the c-section to the week earlier. Arrival date is now Aug. 13th, first thing in the morning. This means that both OB Dr.s and both priests will be able to be there. :) The original Neurosurgeon will not be, but the one that will be there is very good too.

Thursday= =We were supposed to meet with the neurosurgeon but that appointment was cancelled. Just had to do the thyroid biopsy. That really hurt. I didn't faint. afterward it felt like someone punched me in the throat. We also celebrated our 9 year anniversary by going out to eat.

Friday= We had a regular OB appt to check baby's heart beat in measure my belly. Everything sounds good and belly size is right on track. We talked to the clinic social worker again to come up with a birth plan and talk about some other things. While we were there I got a call with the results of the biopsy. They took 5 samples. 4 came back with not enough cells for a good reading. 1 came back as cancer. They want me to come back in for another biopsy.

Saturday= Have to go to the bank to verify some transactions. My debit card got hacked into.

Next week= Jury duty for me
The next doctor appointments that I have coming up are; having another biopsy done, then meeting with my reg. OB doctor on the 8th for one last check up. I am very excited to not have to go to the clinic for awhile


July 23rd the results from the second biopsy came back. I was 34 weeks pregnant and found out that I had Thyroid cancer!  
After Noelie was born he spent almost 2 months in the NICU. It was so hard to leave my baby there everyday and just come to visit. All you have to look at is the monitors, your baby, and the staff. There is only so much you can do with your baby that is hooked up to all kinds of machines. We couldn't even hold him till he was a couple weeks old. All we could do was put our hand though the hole in the "incubator" and hold his hand.

He needed a feeding tube in his nose, IV's in his head or belly button, and some of the time he needed a tube down his throat or in his nose for oxygen. He was 5 days old when he had surgery to put a shunt in his head. This helps keep the fluid in his head regulated and draining.

I spent 2 nights in a room near the NICU, with Noelie, before bringing him home. The staff does this for a lot of parents to make sure they feel confident to take baby home. If you need help they are just a push of a button away. I made it through those 2 nights and we were ready to go home!

We were so happy! We were going to be a "normal" family. I knew it was going to be hard but nothing could prepare me for how it really was. Noelie never learned to suck and swallow, so he came with a feeding tube in his nose. I had to take it out and switch sides every 3 days. He had issues with keeping food down. He would eat over an hour. I would have to stay awake during that time and for about an hour afterward, in case he threw up. He was at high risk for food getting into his lungs so I had to suction him out if he did throw up. I would get an hour of rest then have to start feeding him again. This was 24/7. It was hell. I got very little sleep and became very irritable. I hated my baby.

2 weeks at home he ended up get aspirated phenomena and was hospitalized. We decided to do a surgery to twist his stomach (so he can't throw up) and put a tube going right into his stomach. This eliminated the tube in his nose and having to suction him out as much. This was the best thing we could have ever done. I could get more sleep and fell in love with him again.

Every month after that (till the end of January) he was in the hospital for something. He would still get aspirated phenomena. He also had kidney stones that needed to be removed and were too big to pass on his own. He got a viral infection. He was always there. Coming from the NICU, and not being able to stay with him, we were used to leaving him and just visiting. We became very familiar with the staff too. Actually, I miss them now.

The end of January was his last un-planned hospital stay. He had to wear a helmet for a couple months to correct a flat spot, but doesn't have to wear it now. He has been through a lot and is doing as well as he can be. We have gotten him to a good place with his health. He is growing well. We have gotten used to his feeding tube. He only eats twice during the day but is hooked up all night. He is off oxygen during the day. He had a sleep study done and is on a bi-pap machine at night with oxygen running through it. There is a lot of time, during the day, when he is not hooked up to any tubes. Just like a "normal" child!
Now that I have pretty much caught you up on our story, I want to focus on what it is like raising our special boy. I hope to shed light on this rare genetic disorder. I hope to give others with special children a reason to keep going. To offer advice to get through the day. To encourage them. To share in the little steps that are a really big deal.   

Please feel free to share my blog with someone you may know, or follow it for yourself. I can't wait to hear from you and get to know more people that are raising amazing, special children!

3 comments :

  1. Thanks so much for sharing your story. We also have an amazing little one in our lives. Kind thoughts and strength to you and your family.

    ReplyDelete
  2. Thanks so much for sharing your story. We also have an amazing little one in our lives. Kind thoughts and strength to you and your family.

    ReplyDelete