Winter 2014 so far

Chandlor turned 4! Okay, so that happened a while ago. I ordered the cake for the actual party for the wrong day. Mom of the year award goes to me :) Chandlor didn’t actually turn four until November 2^nd, but we had his party early in mid-October because we were hoping that the weather would be nice enough we could have it at the park. It wasn’t, but the party still turned out great. We actually celebrated his birthday three times this year; his birthday party, the day after his birthday party with his drum cake, and on his actual birthday. Poor kid was probably pretty confused by the time it was over with.

Kendyl turned 1! This year has literally flown by! I can’t believe my baby girl is 1. Kendyl spent her actual birthday at ACH with Chandlor, what a sweet sister! We decided to have Kendyl’s party at our house. It was pretty cramped so we probably won’t be doing that again, at least not in the winter when we can’t go outside. I ordered the cake for the right day (go me) and Kendyl had a great time playing with her friends and cousins. There were actually four one year olds at her party! I’m pretty excited about her growing up with so many playmates.

Uriah turned 27! I think he just gets more handsome every year ;) We went out to dinner for his birthday and he got a MacBook Air.

Uriah and I have been married for two years! This blows my mind as well. I can’t believe he has put up with me for this long! Hah! I am so thankful for him and all he does for our family. My kids have the very best dad/step-dad in the entire world. I definitely married up! We had been planning on going to Dallas over my Christmas break from work for our anniversary, but we ended up scheduling Chandlor’s surgery at this time so we decided to go over Thanksgiving instead. I didn’t really like being away from the kids on a holiday, but we celebrated with them before Thanksgiving with Uriah’s family and after Thanksgiving with my family. I convinced myself that it didn’t matter when we celebrated as long as we celebrated. Uriah and I, in the almost four years we have been together, have never had the same weekend. We don’t get a whole lot of time together, so we really needed and in my opinion deserved this mini-vacation. We had lots of fun ate good food, did a little shopping, and really just enjoyed each other’s company. It was just what we needed.

Chandlor had his coccyx removed! A little bit of backstory. About two years ago Chandlor developed a wound on his bottom. In the beginning we thought that it was a contusion. We thought that it was a onetime thing that we needed to get healed and then it would go away for good. A year later after seeing two different wound care specialists and many other doctors it still wasn’t healed. A plastic surgeon recommended that we make Chandlor lay prone for 6 weeks, only being on his bottom when absolutely necessary. I thought she was crazy, but I was out of options so I took her advice. I was wrong. It was completely healed in 6 weeks or less! What we thought was a contusion was actually a pressure wound. After Chandlor’s wound healed every 2 months or so the scar tissue would become extremely irritated. When this happened Chandlor would have to lay prone for up to two weeks until the area was healed. We tried everything, a ROHO cushion for his wheelchair (they’re the best of the best), an Alternating Pressure pad, limiting baths to every other day, having him wear two diapers with a donut in between them to cushion the area. Nothing worked. Like clockwork after the skin had had all it could take it would start to break down again. Making a 4 year old be prone for weeks at a time is heartbreaking. He was always such a champ and I really think it hurt our heart more than it did his, but it just wasn’t acceptable. His disability affects his quality of life in so many different ways already. We were determined to not let this be one of them. After talking to several people in the online Spina Bifida community I found out that this was a semi- common problem, and it could be resolved by shaving the tailbone! Most people didn’t have a single pressure area after the correction. We met with Dr. McCarthy an Orthopedic Surgeon who specializes in the spine (is that even how you say that? Oh well). He walked in, examined Chandlor’s x-ray, examined Chandlor and immediately felt confident that this was the next step. What a relief!His surgery calendar was booked until February, but he squeezed us in right before Christmas. He is seriously a really great person and doctor.

So now Chandlor officially has no tailbone! It will be several months before we know if this is the answer to our prayers, but we are really hoping that it does the trick. For now, Chandlor is laying prone for at least three weeks and has to keep the wound “open to air” so he’s pretty much chillin’ with only half a diaper on ;)

I’ve said it before and I’ll probably say it a few more hundred times. ACH is such a great place. I was so at ease with Chandlor’s surgery because I knew that he was in the very best hands. They really love these kiddos and what they do for a living. Makes my heart happy!

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.

 

Kendyl is here!

Okay so she has been here for over 9 weeks, but I am just now getting a chance to blog about her arrival. On Monday October 28^th I had an amniocentesis to see if Kendyl’s lungs would be developed by November 1^st, my original c-section date. We received the results the morning of October 31^st that Kendyl’s lungs weren’t quite ready for the outside world yet. I am so thankful that Dr. Nelson and his nurses were so thorough. We were balancing between me going into labor and risking my uterus rupturing and Kendyl’s lungs being developed. They took great care of both of us!

My c-section was rescheduled for November 6^th. Uriah and I had to get to the hospital around 7 that morning and since I couldn’t eat or drink anything after midnight I tried to sleep as late as possible. I will never forget Uriah….who NEVER eats breakfast….decided he needed to eat breakfast that morning lol. I was only slightly irritated. We arrived at the hospital and immediately went up to L&D. I was lucky enough to have an old friend, Jessica McCain, helping with my c-section that morning. It was so nice to have someone I knew helping take care of Kendyl and me.

Around 9:30 they took us back to the OR. I had Chandlor at UAMS and opted to let student nurses, doctors, and anesthesiologists take part in the delivery. I realize now what a difference that makes! Jessica got my IV in on the first try, and the anesthesiologist got my spinal in on the first try. I can remember the student anesthesiologist trying at least six times and the student nurse had to try several times to get my IV in. I know that they have to start somewhere and I’m still thankful that I went that route with Chandlor, but it was nice to only be poked once :P  Within what seemed like a few minutes Kendyl was here! Dr. Nelson stuck Kendyl’s head over the barrier so that I could see her before he handed her to the nursery nurse. It was love at first sight! Uriah was able to go watch them clean her up and check her vitals then he brought her over to meet me. She was perfect. She weighed 6 pounds 6 ounces, was 19 inches long and was born at 10:06 am.  Not bad for her being barely 38 weeks!

Uriah and Kendyl headed to the nursery where they took Kendyl’s blood and finished cleaning her up. They let Chandlor come into the nursery and meet his baby sister. From what I was told he was more interested in getting back to the waiting room where all of the action was at HAH! While they were doing this I was taken to recovery. They brought Kendyl in and I was able to nurse her. She did really well and latched on immediately!  After getting out of recovery Uriah and I asked for some alone time with Kendyl and Chandlor before family came in. It was such a special moment…together as a family of four for the first time!

The rest of the day is a blur to me. Pain medicine makes me so loopy/sleepy I don’t remember most of what happened. Apparently I yelled at Uriah for putting Kendyl in her bassinet because I was afraid someone was going to jump through the window and steal her? Luckily I have a patient husband ;)

Dr. Pilkington, Chandlor and Kendyl’s PCP, came in at some point that night and let us know that Kendyl looked great! He took a good look at her back and had zero concerns. Such a relief since there is only so much you can see in an Ultrasound.

Kendyl did and still does look just like her daddy. Chandlor favors me so much I just assumed that Kendyl would too. Wrong! She looks nothing like me. I was so shocked to see that she had blonde hair! I think everyone was. She currently has gray eyes, but I’m sure they will change color within a few months.

We spent two days in the hospital. Uriah stayed with Kendyl and me. Chandlor stayed with his dad, Joey, but came and visited us both days with my grandma and mom. After being released Kendyl had to go back to the hospital for two days to be checked for jaundice. I was so thankful when her numbers were where they should be…I hated getting her out in the cold with all of the germs!

Chandlor was and is still adjusting to being a big brother. At first he seemed indifferent. The way he has always acted when I held another baby. After a few days he realized she was here to stay and started acting out. I think he is finally getting the hang of things. Every two weeks we take him out by himself…even if it is just to dinner. He goes to his dad’s house two nights a week and we are afraid he’s going to start realizing that Kendyl gets more alone time with us. Spending this extra time with him seems to have helped a little J I know he will love her once she is old enough to sit up and play with him, but until then it is probably going to be a little challenging.

Most likely Kendyl will be our last child. When Dr. Nelson went to take her out the old incision on my uterus from my c-section with Chandlor started to tear (I’m really lucky I didn’t go into labor). Since the scar tissue is so weak he doesn’t recommend that I put it through another pregnancy. We were kind of on the fence anyway about having a third child so it was almost a relief to have the decision, in a way, made for us. If we do decide that our family isn’t complete there are plenty of children who need homes J If Uriah can love Chandlor like his own then I know that we can both love a non-biological child as our own.

One of my very best friends, Lacey Redman, had baby Milah on the same day in the same hospital as I had Kendyl!

Six days later another one of my best friends, Amanda Kimbriel, had Ellie!

So blessed to have all of these new additions!