My thoughts on co-parenting

I’m about to brag on myself Uriah and Joey a little bit. So I should probably start by saying that I make mistakes as a parent daily. Sometimes I spend too much time on my phone. Sometimes I give my kids chicken nuggets for dinner two nights in a row (or three). Sometimes I forget to put Chandlor’s appointments on my calendar and I wish I could hug the little robot who calls me and reminds me. Sometimes I can hardly wait until bedtime because I will finally get a few minutes to myself. Sometimes I am envious of Uriah because he can sit on the couch and watch TV without being pounced on and asked 561 questions :)

Okay now that I have aired a considerable amount of my dirty laundry I don’t feel as bad about giving us a pat on the back.

Y’all co-parenting is NOT that hard. You just have to act like an adult. That is really all that it takes. Have some respect for someone whom you obviously cared for at some point in time and put your child/ren first. It is that simple.

It irks me to get on social media and see parents bashing one another for the world to see. Handle that business behind closed doors! I feel like sometimes people think that mine Joey and Uriah’s “arrangement” has always been butterflies and rainbows. It hasn’t. In the beginning it was really hard. We just chose to have those disagreements privately and now we are better for that. We rarely have disagreements and I credit that largely to keeping the hard stuff between Joey myself and Uriah.

If Joey were to decide tomorrow that he didn’t want to pay child support (don’t get any ideas Joey!) our custody agreement would remain the same. Would it be right for him to not support his child? No. Would it be fair for Uriah and me to take care of Chandlor financially on our own? No. Would it upset me? Yes! Absolutely. But guess who would hurt the most if I decided to limit Joey’s interaction with Chandlor? Chandlor!! It is the children who get the raw end of the deal. And if you think they don’t know or won’t figure out one day what you have done, you are wrong. If Chandlor is going to resent me one day I want for it to be because the “chocolate milk” I give him every night doesn’t actually have any chocolate in it at all :) not because I kept him from his daddy for my own petty reasons.

I understand that every situation is different. I know that in a lot of ways I hit the lottery with Uriah and Joey. I can see how it would be very difficult to be these things for someone who wasn’t willing to be these things for you and your child, but I still recommend that you try. Sometimes being the bigger person and taking initiative is enough to get someone else to change too. There are also situations where keeping your child from their parent is unfortunately best for their mental and physical well-being. Sometimes the bad stuff is just completely out of your control and that is heartbreaking.

Joey, Uriah and I are very good friends. We have dinner together. We go to Chandlor’s doctor’s appointments together. We make medical decisions about Chandlor together. We work around each other’s schedules so that no one misses the time that they deserve with that precious rotten little boy that we all love so much. We even kind of sort of went on a vacation together. I’m not saying that you have to take it this far, I’m just asking you to try! I promise if you make it about your child it is so very easy. Don’t talk badly about their parent in their presence and don’t keep them from their other parent. It is really that simple.

This is me getting off my soap box now. Please know that I know that I am not perfect. FAR from it. Oh and by the way neither are Joey or Uriah ;) but we do try very hard to put Chandlor first and it has become so easy over the years. If we can do it so can you.

An open letter to the doctor who gave me the Spina Bifida diagnosis

Thank you. Thank you for giving me the diagnosis with compassion and empathy. Thank you for having the geneticist ask me if I would like to be offered an abortion one time before any tests were ran. Thank you for honoring my wishes and not bringing it up again after you had a diagnosis. Thank you for patting me gently on the leg once I began to cry. Thank you for giving this diagnosis as if it was your first time, not hundredth as I’m sure it was. Thank you for bringing so many people in with you for the diagnosis, as I know UAMS is a teaching hospital. I can only hope that your interns and residents learned from your kindness that day and every other day. Thank you for showing me via ultrasound exactly why you had diagnosed my baby with Spina Bifida. Thank you for putting all of the medical terminology that I didn’t understand at the time into layman terms that I could understand.  I don’t remember your name, but I will never forget your face. Thank you.

As Arkansans I think we sometimes take for granted how wonderful both UAMS and ACH are. I have heard horror stories from other moms across the country who have gotten the Spina Bifida diagnosis. You would be surprised by how many of them received sub-standard care. It is sickening. I was fortunate enough to receive the very best care. I will forever be indebted to UAMS.

I always get a little nostalgic around this time of year as it gets closer to Chandlor’s birthday, he’s going to be 5….how did that happen? It is my mission to show as many people (medical professionals include) as possible that Chandlor does have a great quality of life, that I did the right thing by choosing LIFE, and that Spina Bifida isn’t really as scary as it may seem.

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!

Chandlor's 3rd Birthday Party!

We had such a great time at Chandlor’s birthday party! His birthday isn’t actually until November 2^nd, but as of right now I am scheduled to have Kendyl on November 1^st so we decided to have his party a little early. We went with a pirate theme! Chandlor only recently started showing interest in cars, trucks, tractors, and motorcycles. I kind of wish I would have waited a little longer before deciding on a theme…but I’m a planner so I buy and plan everything in advance. Overall, Chandlor’s party went really well! It was originally supposed to be at the park, but somehow the pavilion was double booked. We volunteered to have his party elsewhere. I felt really bad for the lady who was trying to figure out what to do about the double booking and I knew that our family and friends wouldn’t mind a last minute change J

Michelle Mayer did such a great job on Chandlor's cake!

 

 

Chandlor loves attention! I mean what 3 year old doesn’t? At the beginning of the party he rolled around in his wheelchair and flirted/played with everyone while they ate. It made me happy to see he was having such a great time. He did almost clothes line himself once on a table. He is at that perfect height in his wheelchair where most tables are about at his neck. He raced full-speed towards a table with no intention of stopping J luckily I was in running distance and caught him just before he hit. He thought it was hilarious.

 

 

Chandlor stopped taking naps on the weekend (for me at least) a few months ago. That being said, Chandlor didn’t have a nap before the party yesterday and towards the middle/end it became very obvious ;) He didn’t want to open his presents, or for anyone to sing happy birthday to him, or really much of anything. He mostly just wanted to go downstairs and “play sacketball” aka basketball. He got so many nice presents! I can’t thank our friends and family enough for coming and celebrating his day with us!

 

Uriah and I got Chandlor a truck for his birthday. Luckily my grandpa is very very handy and was able to re-wire it and make it hand-powered so Chandlor can use it. We gave it to him at the end of his party and even though he had been rotten for the past hour we finally saw a smile on his ornery face. He asks to drive everything so I am excited that he finally has something that he can drive!

Usually Joey gets Chandlor on Wednesdays and Saturdays, but his mom is in from Houston this weekend so he gets Chandlor for the whole weekend. I am so glad that Chandlor is getting this time with his other grandma, but I am missing my boy J Uriah has already taken most of his toys out of the package (and played with them) so we are excited for him to get home tonight.

This will probably be Chandlor’s last birthday party by himself until he and Kendyl are old enough to protest having their parties together so we wanted to make the most of it. There was a great turn out I think he had lots of fun J