Recent Craziness

The past few days have been pretty crazy. Despite the chaos I wanted to jot down a few things about the past few days…if nothing else to look back on and be thankful for our “normal craziness.”

I tried having Chandlor’s Birthday Party at the park for the second year in a row. Fail. Which was fine. I moved his party to the Marvin Vinson Building. I found out an hour before the party that they needed to close down 30 minutes before our party was scheduled to be over. Okay we will rush through things. I ordered Chandlor’s cake for October 12^th instead of October 11^th .We ended up with a Wal-mart cake instead. Even though so many things went wrong Chandlor had a blast!! He loved getting to see everyone, play with all of the kiddos and open his presents. I really can’t complain. The party turned out pretty great despite everything that went wrong. Thanks again so much to everyone who came.

Saturdays are Joey’s days with Chandlor. Around 8pm Chandlor started vomiting and continued to vomit throughout the night. Uriah also started vomiting. To me it sounded like a virus since both Uriah and Chandlor were sick, but I called the neurosurgeon on call at ACH to make sure that they felt the same way. They were concerned and wanted for us to bring Chandlor in. Chandlor has hydrocephalus. Due to his Spinal Cord not completely forming excess spinal fluid becomes trapped on his brain. He has a VP programmable shunt placed behind his right ear to drain this excess fluid into his abdomen. A shunt has an average life of 5 years but can last 2 days or 15 years; you never know when they will fail. Some signs of shunt malfunction are: vomiting, excessive sleepiness, not being able to look up without moving your head, seizures etc. Therefore, every time Chandlor vomits I have to be concerned that his shunt is malfunctioning. If Chandlor has a fever or also has diarrhea it is a lot easier to say that he is vomiting because of a virus, but unfortunately at this particular time he was only vomiting.   

This is a VP Programmable Shunt like the one Chandlor has.

Since Uriah was in bed sick I took Kendyl to my in-laws and then Joey and I took Chandlor to ACH together. We made it to the ER. Thankfully, the ACH ER sees their patients in order of necessity vs. arrival time so Chandlor was immediately taken back. They did a cat scan to check the size of his ventricles in his brain to see if there was any excess fluid and did a shunt series which is pretty much an x-ray of his abdomen and head to make sure that all of the pieces of the shunt were in the correct place.

The CT came back semi-inconclusive. Some parts of his ventricles were larger compared to the last scan and some of them were actually smaller. Neurosurgery (and momma) were pretty sure that this was just a virus, but radiology was concerned and wanted for Chandlor to be monitored overnight. By this point it was around 5pm and Chandlor was looking and feeling much better. He was able to keep down his Gatorade as well as his dinner. He also didn’t make a peep when the nurse put in his IV. I couldn’t believe it! This kid constantly surprises me.

Around 7pm I started vomiting. Understandably, they will not let sick non-patients stay in the hospital overnight. We had a super sweet nurse who watched Chandlor sleep while Joey took me to a hotel. As much as I didn’t want to be sick…and especially didn’t want to be away from my sick baby I can’t tell you what a relief it was for three of us to be sick. I just knew this had to be a virus.

The very next morning Joey got sick. Luckily he made it through the night without getting sick so that we didn’t have to call another family member to come and stay with Chandlor. The neurosurgeon came and looked at Chandlor and decided that he did in fact have a stomach virus and that we could go home YAY! At this point Chandlor had been symptom free for over 24 hours. After they released Chandlor from the hospital they came and picked me up from the hotel. We slowly but surely made it home.

After making it home my in-laws came over with Kendyl to help with Chandlor. I really don’t brag on them enough. They were so so helpful. I was able to go get some rest while they took care of both babies until Uriah got home from work. Chandlor ended up eating three pieces of pizza and keeping his entire boost (milk) down. It was so great to see him feeling so much better!  Just in case I lost you this was Monday.

Tuesday morning Chandlor was still looking and acting great so since he had been symptom free for 48 hours I let him go to daycare. Around noon daycare called to let me know that he had vomited again. Poor guy! I called Neurosurgery and since his CT looked a little off on Sunday they wanted to see him again. So back to ACH we went. My in-laws watched Kendyl for us again (very thankful for them!) and Uriah was feeling better so he was able to go this time. 8 hours and another CT and shunt series later they determined that there had been no change and that this was still a stomach virus, thank goodness!!!  When they are evaluating you for a shunt malfunction you cannot eat just in case you have to immediately be taken back for surgery, I’ve never seen my boy eat a small French fry so fast ;) he was pretty excited to be eating and going home!

These past few days have been pretty rough, but it has made me so thankful for Chandlor’s health! I hate that we had to expose his little body to so much radiation in such a short span of time, but it was necessary and gave us the answers that we needed. I/We are all so blessed to live near Arkansas Children’s Hospital. It is truly a great place and I owe them so much. I am thankful that my husband doesn’t think twice about Chandlor’s dad and me taking Chandlor wherever he needs to go at any time of day. I’m thankful that I didn’t have to worry about Kendyl because she was being cared for by her daddy and my awesome in-laws! I’m thankful for everyone’s prayers! It was so nice to see how many people love and care for my boy. I’m especially thankful for my Gramme. It seems like she always knows just what to say to make me feel better!

I know that this is really just a bunch of rambling, but I wanted to fill everyone in on what has been going on. I also wanted to write (type) this down so that I can look back and laugh about it once I’m not so tired ;) I will have another post for Chandlor's birthday party once I have time to upload pictures!

Folic Acid...Spina Bifida...and the Elephant in the room.

There has been a lot of talk lately in the Spina Bifida community about folic acid and its relation to Spina Bifida. Did you know that by taking folic acid you can decrease the possibility of your child being born with Spina Bifida by up to 70%? That is pretty impressive. I always encourage women who are sexually active to take the recommended 400 mcg of folic acid daily. It can make all the difference.

I wanted to write this blog to educate others about folic acid, but I also wanted to address the elephant in the room. I have talked a little in the past about Chandlor’s Spina Bifida being genetic. I could have taken 100 times the recommended dose of folic acid, jumped through a flaming hoop, walked on water…and Chandlor still would have been born with Spina Bifida. It is a genetic code, and unfortunately at this time that genetic code cannot be altered or undone.

I was not taking folic acid when I became pregnant with Chandlor. He was the best surprise of my life, but I was not prepared. Even if I would have been trying to get pregnant I had NO idea that I should be taking folic acid while trying. After I saw the positive sign on the pregnancy test? Sure! Call me uneducated…call me naïve…or call me human. I didn’t know.

Chandlor was two months old when I found out that he had a duplication on his XQ27.1 chromosome and that this duplication that I unknowingly and involuntarily passed to him had caused his Spina Bifida. So from the time I was 18 weeks pregnant until Chandlor was two months old I thought that I could have played a role in him having Spina Bifida. This crushed me. It was the darkest part of my entire life. Not only did my baby have a life threatening birth defect, but there was a 70% chance I could have prevented it (so I thought). I had a nurse in the NICU say to me “I don’t know why we see so many babies come through here with Spina Bifida…they know what causes it” she was wrong. In every way possible. But it still broke my heart. I have heard of several other people putting the blame on me for Chandlor having Spina Bifida…luckily it was around a dear friend who came to my defense (Shout out to that friend! You know who you are.).

My heart breaks for other moms who have children with Spina Bifida and like me, did not take folic acid. Some of them were in similar situations as me. Either they truly did not know they should be taking folic acid, or their pregnancy was unplanned. They will likely never know what caused their child to have Spina Bifida. Most people who have an accidental pregnancy are not taking folic acid, yet the only people who get ridiculed for it are the people who have children with Spina Bifida? Not fair. Not appropriate. Not right. It infuriates me.

I want to encourage you to take folic acid. Every day. Especially if you are trying to conceive. I want to encourage you to tell other women who are in their child bearing years to take folic acid. Every day. It is so important.

If you have any question PLEASE feel free to ask me. Anything, really. I hope this post doesn’t sound too self-centered. I wanted to highlight a particularly sucky time in my life in hopes of encouraging others to take folic acid. It played no role in Chandlor having Spina Bifida but it COULD have.