Sunday, October 24, 2010

Cannon's Story

In honor of October being Spina Bifida awareness month, I decided it was time to actually write out Cannon's story. It took me quite a bit of time to do. It really takes you back when you sit and try to put into words all that we went through. I know that many of you were right there with us and we are so thankful you were. The Lord has truly blessed us beyond measure.

April 11, 2008
While I was at work this day I noticed that my hand coordination was off, and my hand was numb. The numbness started moving up my arm, into my neck and face. I came out of the patient's room I was in and went to the nurses station where my coworkers were. I told them that I felt like I was having a stroke. Of course being 27 everyone thought I was crazy. But I didn't feel right. One of the girls wheeled me down to the ER to be checked out. I spent the rest of the night there, after CT scan, chest x-ray, and lots of lab work they sent me home. The doctor said he thought that I had a TIA (mini stroke) and told me not to ever take birth control again, and take a baby aspirin a day.

Two weeks later I got pregnant.

I went for my first doctors appointment at 8 weeks he looked further into the lab work I had done in the ER. One of the tests had come back positive and it concerned him a little bit. He did further tests and sent me to the Perinatologist at 12 weeks for a second opinion. They decided that I needed to start taking blood thinner shots to protect me from having a miscarriage. They thought there was a possibility that I had a clotting disorder called Antiphospholipid Antibody Syndrome. So I began taking the shots every night. When we left the doctors office that day he said we would come back in a month. I would be 16 weeks and we may be able to tell if we were having a boy or girl.

August 14, 2008
Trey and I went for out 16 week appointment, excited to find out the gender of our baby. Dr. Maberry, our perinatologist, started the ultrasound and looked and looked for a long time. He finally stopped, turned the machine off and turned the lights on. He began to explain that the baby had spina bifida and what he could see on the ultrasound, "lemon sign", "hydrocephalus", "opening in the spine". I'll never forget that day, what he said is all a blur to me now, but the heartache I felt will stay with me forever. Trey asked him if we were going to loose the baby, and he said it wasn't likely. He said that the baby would likely have bowel and bladder problems and hopefully walk with leg braces. He told us that there was always the option of termination, but I quickly told him it wasn't an option for us. Next he turned the ultrasound back on and showed us all of the signs he was seeing on the spine and brain. He asked if we wanted to know what we were having...a boy! We were so excited! Dr. Maberry said that he wanted us to see another doctor in Ft. Worth to verify diagnosis. If our little boy did really have spina bifida then he would have to be delivered in Ft. Worth because Abilene doesn't have the facilities to take care of him.
I had learned a little about spina bifida in nursing school, but didn't remember too much. A family friend got me in contact with her daughter in law, who's son also has spina bifida. I talked a lot with Kim and she explained a lot about what to expect. She taught me a lot in those first days. I learned about a study program that she participated in, the MOMS study, a surgery that is done to close the defect in the baby's back in utero. I was very curious about this, but scared at the same time. I kept thinking, what if I think this is a good idea but it's not God's will. What if it's not the right thing to do? Kim told me what helped her make that decision and I agreed, all I had to do was make the decision to do it. If it was God's will I would be accetped by the doctors that do the study, then when randomized I would be selected for fetal surgery, before he is born.
We kept praying that the diagnosis was not right, that what Dr. Maberry saw, the new doctor wouldn't.

On the 18th we went to see Dr. Tabor, another perinatologist. He was very dry, and hard to read...not really the best first impression. He too said our baby boy had spina bifida, but he did not suggest terminating. I was shocked! He recommended termination for Kim and her husband. What made us different? 
He said that Dr. Maberry would continue to follow me in Abilene and we would come back to see him later in the pregnancy. I asked him about the fetal surgery, but he said he didn't think I was a candidate for it. I wasn't sure what that meant. Was it that he thought the baby was too bad off, or that what I "may" have wouldn't allow me to do it? I'll never know. But I didn't count it out. Dr. Tabor said he would set us up with a consulting neurosurgeon so that we would know what to expect once the baby was born. But for now we just wait.

The next few weeks were the hardest of my life. I kept praying, praying, and praying. I knew that I could handle being this baby's mommy but I didn't understand why he was going to have to go through this. This innocent baby coming into a world of evil, I was already worried about what he'll go through. The hardest part of it for me was the pain I felt for my little boy. For my baby Cannon.
I remember how my relationship with the Lord changed, of course I had my family and friends, but I needed HIM. He carried me through. I believe that a long time ago He told me I would have a child with special needs. And that I could handle it. Knowing that got me through. I praise him for preparing me in that way.
But I felt like I needed to do everything I could to help him.
So I called and did a telephone interview to determine if we qualified for the study. Unfortunately the possibility of my clotting disorder kept us from being accepted. Of course I had a hard time accepting it, this was something I really felt strongly about. I felt like it was something I needed to do to help my baby. Now my hands were tied. There was nothing I could to to help him, except take care of myself.  So that's what I did...and I prayed.

December 26, 2008
We went back to see Dr. Tabor for an amniocentesis. We needed to know if Cannon's lungs were strong enough to breathe on his own. We stayed the weekend, wondering, in Weatherford waiting to find out if we would get to meet Cannon on Tuesday.  The weekend came and went, and Monday morning the nurse called and told us to come Tuesday for my C-section. 

December 30, 2008 at 9:44am Cannon was born. I can still hear the words as clear as they were that day.
"9:44" and Trey saying, "That's my boy!"
I only got to see him for a moment as they wheeled him by to take him to the NICU.

While I was finishing up in the OR and getting settled back in my room the rest of the family got to go back and meet Cannon. Of course they were all in love at first sight. Cannon is the first and only grandchild on both sides of the family. Not to mention he's a very special little boy! I was finally able to go back to see him about 12:30 as they were getting ready to take him over to the NICU at Cook Children's and I was going up to my new room on mother care. The rest of the day was just a time to try and rest and relax because we knew tomorrow would be a BIG day. Here is our first family photo...
The next afternoon Cannon had his back closure surgery. He did very well, it didn't even take them as long as they thought to do the surgery. In fact I missed talked to the surgeon because I had to go back to my room and didn't get back in time. They did not put a shunt in at that time because the hydrocephalus was stable and they still wanted to watch it. We spent the next week in the NICU "watching" his head and incision on his back. Here is before and after pictures of his back...
See how angry it looked! He ended up having some tissue around the incision die because they had to pull it so tight to make the closure. Luckily we were able to stay at the Ronald McDonald House just up the road, so we settled in while Cannon healed up. At right at a week he gave us a scare. He started having really bad stridor one night after a feeding, his nurse let me take him off the monitors and in a private room with just Trey and I to breastfeed. After he ate the breathing got worse, and we couldn't let it go. The nurse called the neurosurgeon and he said we would most likely get a shunt the next morning. And we did, Jan. 6th. He did well with the surgery and the shunt appeared to be working well. So more watching and waiting. 
We spent a few more days in the NICU then moved to the progressive unit of NICU, then rooming in. We finally got discharged on January 14th. Instead of going home to Clyde we stayed in Weatherford with Trey's cousin so that we could be close if we needed anything. Then my mom and dad met us and we all traveled to Clyde together. 

January 18, 2009
Tonight Cannon was just not acting himself, just more fussy than usual and I couldn't find a reason. After noticing that his head looked different, I felt his soft spot and it was bulging. I asked my mom for reassurance and she agreed. Trey called the neurosurgeon, Dr. Honeycutt was on call. (He is the surgeon we originally met before Cannon was born, and he was out of town when it was time for we got Dr. Roberts) Dr. Honeycutt told us to come to the ER at Cook, so we quickly loaded up and headed back to Ft. Worth.  We got there about midnight and into a room around 5am. After a maybe a couple hours of interrupted sleep, we were up and preparing for surgery. Mandy, the neuro nurse practitioner came in and took a sample of spinal fluid from the valve of Cannon's shunt. They were thinking infection as opposed to blockage because of it being so soon. Early results showed increased cell counts, pointing towards infection. We later found out it was a staph infection. That afternoon (Monday) Cannon went in for surgery #3. And how cool is it that before surgery Dr. Honeycutt asked if he could pray with us, he put his hand on Cannon's head and prayed over him and for all of us. It was AWESOME!!! They made a small incision on his right chest, and pulled out all of the shunt tubing leading to his belly. For the time being it drained externally, into a bag. The surgery went well, it only took about 15 minutes. The plan was to let the fluid drain on the outside while treating the infection. While in surgery they collected more fluid and sent it and the tip of the tubing for culture.  All other cultures sent came back negative, only the original one from the valve came back positive. We were very fortunate to catch it early. THANK YOU LORD!!! Cannon did pretty well waking up from surgery and did well recovering. Unfortunately he went back to the OR the next morning to have a central line placed, ugh! They should have done that when he was there the day before! We spent a couple weeks in the hospital while he received IV antibiotics and on February 2nd he had surgery to replace his shunt. They watched him for a couple of days while he got the last of his antibiotics. February 4th we got to go home. And THANK YOU LORD we haven't spent another night in the hospital since then.

Cannon has had a few minor illnesses in the last 20 months, but nothing major since the shunt infection. We found at about 6 months that he had strabismus and in August we back to Cook's for a day surgery. They loosened the inner eye muscle on both eyes, and today they look much better. He still wears glasses because he is a little nearsighted. But with our family history, that is not a surprise! Not to mention he's way too cute in them!
Cannon is full of energy, very sweet and lovable, he is the happiest kid I know! He army crawls everywhere. Wears AFO's and KAFO's. He loves to be in his standing frame, ride his 4 wheeler, and is very much IN LOVE with horses. He just started hippotherapy a few weeks ago and is doing great! He isn't walking yet, but we are working hard and ordered him a walker this week. Hopefully soon! We are quickly approaching 2, the time has flown by. I can't believe how big he is getting but I am truly enjoyed every day of it. I thank God every day for my sweet boy, he is the joy of our life!


Mom to Bin and Oaxie said...

I enjoyed reading all about little Cannon's journey. How reading that brought back so many memories. He is so adorable and I can't wait for us to meet at camp!!

Vesti said...

Oh how we love our sweet "angel baby!" :) And his parents!

Ray, Star, and Tanner said...

I also have a son, Tanner, who was born with SB on 12/15/08. So Tanner is 15 days older than Cannon! If you would like to read more about Tanner, we have a blog.

The Watsons said...

Loved reading this, Ali! You have such such a cute little boy, and Cannon is lucky to have you as his mommy. You are both blessed! Love you all.

Jodi said...

Just now got to read all of this.... SO many memories. But goodness, we are some BLESSED Mommas!!! Love y'all, and that sweet little man!

Seriously, his glasses are TO DIE FOR!

JessicaDuran said...

Cannon is such a sweet boy! He is one of my favorite former patients. I am so blessed to have met yall and to have taken care of your sweet boy! Time flies!!!!cesti