My-elomeningocele-Story Part 4: Labor and Life with Rowan

8 weeks went by, to the date, of my surgery when Rowan arrived.

I guess I had been in labor for 3 days and didn't even know it. I knew that I was feeling more pain, but I thought it was Rowan getting heavier and putting more weight on my incision. I tried taking a bit of my prescribed oxycodone and that didn't help at all. Maybe I wasn't getting enough sleep or I wasn't hydrated enough but being in labor wasn't even crossing my mind.

It was Palm Sunday, the Sunday before Easter. I had woken up, feeling especially gross, and told my husband I couldn't even get up for church. I ate a little bit of food and decided to go take a nap. At around 12:15pm I'm laying in bed and freak myself out because I felt like I just peed. I ran to the bathroom, and the water is pink...that's not pee...heck, I don't know what it is. I yell for Logan saying my water just broke, at only 33 weeks and 2 days, my water just broke. I call my mom on her cell phone, no answer. I call my dad on his cell phone, and by luck, he answered and said my water just broke. He immediately yells downstairs to my mom, my brother tosses her his car keys, and she's out the door before my dad hangs up. Next thing I know, my mom is at my door and takes one look and says "Hospital, NOW!". The scary thing was, if I was anything like her, I would start contractions ASAP and that couldn't happen or else Rowan and I would die. I get a dress on and start hobbling out the door, already bawling and blaming myself for not keeping Rowan in longer. The cement to our driveway had just been paved and so we couldn't back our cars out. It was raining, and I was starting to walk to my mom's car when my dad honks his truck horn and drives right onto the grass to stop right in front of me. I get in the car and cry all the way to the hospital in American Fork.

When I get to the hospital, the staff was working as slow as molasses, not understanding the urgency of my situation. Finally Dr. Young arrives, takes a look at me, and decides that maybe it would be best if I was taken by ambulance to the University of Utah hospital. Once that was rolling, my dad takes a look at my contraction monitor, tells my mom, and she calls Dr. Ball on his personal cell phone and gets Dr. Young BACK into my room. I was having big contractions 2-5 minutes apart. Dr. Young takes one look, explains to Dr. Ball what's going on and Dr. Ball DEMANDS that I be life flighted to the University.

Yeah, I got to ride in a helicopter.

Once I arrive at the University, and it was confirmed that my water had broken, they figured I was far enough along to not stop my labor and get me prepped for c-section. Everyone was happy that the day had finally come for Rowan to be born. Not me. I was feeling horrible and blaming myself that I hadn't been able to keep him in longer to give him a better fighting chance.

I struggled with those feelings even after he was born.

Rowan Roberts Laycock was delivered at 6:01pm on Sunday, April 13, 2014. He was 19 inches long and 4lbs 9oz. They had to rush him over to Primary Children's and so I didn't even get to see him until 2-3 hours later. When I saw him, he was the most beautiful thing I had ever seen. All I could say was "Hi Baby, hello my beautiful baby" all the while crying.

This picture was the first time I saw him, it was almost like seeing a baby doll with tubes all in it. With this beautiful little miracle sitting beside me, I couldn't even hold him and I felt like it was my fault. I didn't get over those feelings until he was doing well and able to be discharged from the NICU. I didn't get to hold him until 2 days after he was born. When I held him for the first time, I sobbed and all I could do was rock and say, "He's my baby". I loved him with my whole heart and made a promise to never go a day without seeing him. I would arrive early in the morning and stay late into the night, holding him, singing to him, staying by him, and basically doing everything the nurses would do. I would change his diapers, take his temperature, change his foot monitor, and measure his belly to make sure no pressure was building up. I would be involved in the meetings when doctors would do rounds. He was MY baby, and I needed to take care of him.

There were big celebrations when Rowan began to progress. No more IVs, YAY! Rowan nursed for 5 minutes, YAY! Rowan nursed for 10 minutes, a whole feed, YAY! Rowan doesn't need a feeding tube anymore, YAY!! Rowan can come home, after only being in the NICU for 3 weeks, HUZZAH!! Was it terrifying? Yes, we had this little tiny thing that couldn't be on it's back until the patch, placed in utero to seal the opening in his spine, healed and he was coming home on oxygen, which it was our job to monitor.

Rowan is still on oxygen, but on the most minimal amount, only when he sleeps. He is my beautiful baby and I love him with all my heart.

No more catheters; his bowels are releasing on their own. Movement? Yes, all the way to his tiny, beautiful toes. Head growth? A little on the larger side, but no need for a shunt. Can he hear? Can he see? Yes, hearing is perfect (he just learned to tune things out due to his experience in the NICU) and his tracking is amazing! He's even learning to smile while awake. Happy, healthy, and hungry? As always...last time we checked, he was a whopping 10lbs 12oz.

We are doing therapy to make sure he is aware of his legs and practicing the sensation of rolling over. He tracks beautifully and is my little snuggle bug.

God still allows miracles to happen. 

I am so grateful that my miracle just keeps on growing.

My-elomeningocele-Story Part 3: Surgery and Post Operation

You know that saying, "Where Fear Exists, Faith Cannot"? Well, I think in times like these, God understands.

Thursday night arrives and Logan stays by my side in the hospital room. All the nurses could say was "try to get some sleep". And I did, but it doesn't mean I wasn't scared out of my mind but at peace at the same time.  One of my nurses, Sabrina (she had my back the whole I stayed in CA...she got after the nurses if they were being sucky with my care) came in to give me an IV. I had never had one before, so I asked her how painful it was. "Is it more painful than an *amneo? Because that was super painful." She said no, I was still scared, but forced myself to relax, and in it went. That was probably the least painful IV I had. Many more were to come, along with bruises and scars. My parents and my in-laws both attended the stay in California for surgery and a few days of recovery.

The morning of the surgery I did have to have an epidural, which I am so thankful that Logan was there for because I was also terrified of that process...it was a peace of cake. I was placed on another bed, made to drink this sick-nasty antiacid drink (which a med student was by my side the whole time, a real sweet guy, studying the process, and I was his guinea pig) that I couldn't even bring to my mouth for about 20 minutes. Finally the med student got everyone a cup, filled with water, and we all downed it at the same time. I didn't throw up! I was so proud of myself! Thanks to him, I was able to get that sicknasty fluid down and not aspirate on my own fluids during surgery. Once the operating room was ready for me, they placed me on the operating table, which when I looked to my left, I saw someone having surgery on their leg...it looked like it does on the Discovery Channel. Not much time passed and they had me hooked up to an oxygen mask and pumping this burn-y liquid into my arm. Within a matter of seconds I felt the burn and conked out.

I don't remember much due to the fact that 2 days of my life I was heavily sedated and forced to sleep. Thus, no memory. I was placed under a magnesium drip which would cause my uterus to basically sleep. With the surgery I could NOT go into labor and so the magnesium would attempt to do the trick. It did. I felt like a blob on drugs that made everything seem like it was a good thing to eat rainbows and poop butterflies.

It came to be that during the surgery, Rowan was perfect. He didn't move, at all, and he was able to be stitched up just fine. The complications came with me. They actually held me an hour longer in the operating room to watch my progression or digression. There had to be at least 20 different doctors all working on the same team to help Rowan and myself come out alive. During surgery, when they flipped my uterus out of my body, a giant bruise formed between the uterus and the placenta. If the placenta lifted anymore, they would HAVE to deliver Rowan because he wouldn't survive in the womb. Luckily, I stabilized enough to remove me from the operating room and into a hospital bed that I would stay in for 6 long agonizing weeks. When I was moved into my room, I remember waking up later that night and a nurse trying to wake me up while others were scurrying around the room trying to stop my bleeding. I guess I was bleeding...a lot and I had lost a LOT of blood. Blood transfusions were standing by, as well as Emergency OB's to deliver Rowan if my bleeding didn't stop. One of the chief doctors told my in-laws that they needed to prepare for a baby to arrive that night. While the nurse was trying to get me to respond, all I could say was a prayer. I couldn't even vocalize the prayer because the magnesium was so heavy. They had to give me an extreme amount in order to try and save my life. Anyway, I just prayed that Heavenly Father would bless my body to stop bleeding, I would stabilize, and they wouldn't remove Rowan. I prayed that Rowan would be safe and protected inside me...and then I passed out and didn't wake up until Valentine's Day morning.

Logan says everyone stayed by my side until I woke up. He'd never been so worried in his life. When I woke up, he was so relieved and that I was a little loopy. I had to start my digestive system over, and had to eat ice chips the first day and slowly progress to jell-o, and go up the ladder from there. I was on the magnesium drip for 5 days. I felt hot and wobbly and dry all the time, and all I wanted to do was take a shower. My biggest feats were rolling over in bed to one side...which I couldn't do unless 2 people were helping me. I had to breathe into this little plastic mechanism to make sure my lungs were expanding and contracting and not filling up with fluid from being on bed rest. When I finally could get up, it was the worst pain I have EVER experienced. I cried and begged the nurse to let me sit down...she didn't. Going to the bathroom was miserable and I had to hold my belly whenever I walked because the weight of Rowan was...was just so hard to bear.

Eventually I progressed, I threw up a lot and that never really went away, even after being released from the hospital. Because of the bruise, I had to remain in the hospital for 6 weeks. My mom stayed with me the whole time and Logan would fly up on the weekends, sleeping in hospital chairs and ehstinky twin beds. But all through it, Rowan was doing great. He was kicking, hiccupping, and growing his strong little heartbeat. The baby was doing better than me, and that was evident for the rest of my pregnancy.

At one point the doctors didn't think that I would be released from the hospital, let alone be allowed to go home. That wasn't even an option. My condition was not stable enough and I just had to accept that I would remain in CA for the duration of my pregnancy. Thankfully, through fasting and the prayers of my loved ones, God had a different plan. My bruise shrank enough for me to be discharged from the hospital and be allowed to stay in a family house just down around the corner. From there, my mom created a home away from home in our one room living quarter. Eating was miserable. I actually didn't eat hardly anything at all, and most of the time, my mom had to feed me because I didn't have the energy or stomach to eat. Showering was miserable. I had to keep a chair in the shower in case the effort was too much and I needed to sit down. Sleeping was even miserable until my mom purchased a Snoogle for me. Nonetheless, it's all I did. All I did was lay in bed, watch every single season of Law and Order: Special Victims Unit, watch Frozen a million times, What to Expect When You're Expecting, the Batman series, and crochet baby blankets until I felt like my fingers would fall off. I'll tell ya, the pain and discomfort in my abdomen was greater than anything I had ever experienced. I had to be so careful with everything I did, and I couldn't even walk very far. I had to get a wheelchair and my mom had to push me everywhere. Luckily we did get a handicap pass, which was WAY awesome and saved us tons of money in parking fees. Handicap passes allow you to park wherever you want and not pay for it downtown.

Eventually I healed and progressed even more! Again, through prayer and fasting, my bruise completely disappeared and I was able to go home!! I was safe enough to fly on a plane, as long as I had a wheelchair and boarded first as well as exited last. I couldn't let anything jar my stomach or cause distress to my body because it could cause labor. So, with those instructions, I packed my bags and my dozen pill bottles and headed home to Salt Lake where Dr. Ball would be watching me VERY closely until Rowan arrived.

Dr. Ball's location in Salt Lake was the ONLY reason they discharged me to go home. Another blessing.
Doctor appointments were made for about 2 times a week, every week, until Rowan came, and so I was constantly being monitored, poked, and cameras shoved inside me to make sure that Rowan was still healthy and strong. Boy oh boy, it was an adventure...an 8 week long adventure, but an adventure just the same. I was miserable, and in pain, but I was doing all I could to keep Rowan inside me, happy, healthy, and safe.

*I did have to get an amniocentesis before heading to California in order to see if Rowan had any other disorders. My mom said it wasn't painful for her at all...LIES! It was probably the worst pain I had ever experienced in that point. I was shaking, I was sweating, I was moaning...all clutching my husband's hands and breathing into his chest to avoid movement. It felt like it lasted forever. Once the fluid was sent off for testing, everything did come back fine and that was another green light to get us to California.

My-elomeningocele-Story Part 2: Pre-Surgery

Dr. Ball was a quirky man. He kind of reminded me of Waldo, from Where's Waldo, except he had salt and pepper hair and no glasses. He did have the quirky shirts and ties, that I couldn't figure out if they matched or not. Right? You're probably thinking, "Dude, you just found out your baby has Spina Bifida and you are worrying about whether or not your doctor's ties match or not?" When your whole being goes into a state of shock, you find anything that can bring you normalcy. That was a searching moment for me.

Parents from both sides attended this meeting with Dr. Ball, who did another ultra sound confirming Rowan's diagnosis. We were told that the opening occurred on his L4, which would mean some difficulty with walking, but he was still so small, anything's possible. Not anything positive or reassuring, anything and everything is, well, by chance. Dr. Ball then went on to explain our options and eventually came to describe a study and surgery he participated in a few years back. The MOMS Trial, held at UCSF was a study specifically for mothers with unborn babies who had spina bifida. 50% were then randomly selected to have the option of undergoing In-vitro surgery to repair the opening before the baby was born. Percentages of not needing a shunt were higher as well as ambulation when the surgery was performed in utero. Those babies who were born with the hole not repaired showed higher needs for a shunt and assistance with walking, as well as bowel emptying. No brainer, right? Surgery it is! Little did we know of ALL that would be entailed, but we told Dr. Ball that we would like to at least be connected with UCSF to be considered a candidate for surgery and attend the 3 day long meetings in San Francisco to ultimately make the decision.

Most people I spoke with, regarding the surgery, had 3 to 4 months to make a decision. We had 3 days.

With the in-vitro surgery, the final cut off is 26 weeks gestational. I was already pushing 23 weeks. By the time we were connected and flown out to California, I was almost 24 weeks. By the time the surgery was scheduled, to the day, I was 25 weeks along. Time flies, right?

From the time that I met Dr. Ball and the time scheduled to meet with the doctors in CA, it was a total of about a week. In that week I took a leave of absence from school, asked for a release from my calling at church, took leave of work, and cried...a lot. I spent most of my days in bed crying and holding my belly. I would rub my belly, sing and talk to it...trying to connect with the little soul inside me. My mom and mother-in-law would come over and just sit with me. My mom didn't like leaving me alone, and so she would just come over and watch me sleep while I cried and prayed and cried some more.

Finally it was time to fly out to California and we were given a crash course in elective surgery. It was 3 days of worrisome questions and no concrete answers and no guarantees. It was possible benefits for baby and absolutely no benefits for the mother. My mom, dad, mother-in-law and myself were the only ones who were able to attend the meetings. Logan had to stay behind for school and work, so he attended by SKYPE when he could. The first day we met everyone, and our wonderful contact nurse, Rachel, face to face. Smiles and how-do-you-do's were shared, and then it was time for business. For the next 2 days, everything that could possibly go wrong for me and for the baby was shared, all they knew about Rowan's condition was shared (which, come to find out, his spinal exposure was higher up...L2 which meant definite confinement to wheelchair if the surgery wasn't performed. If the surgery was performed, it would be as if the opening was at an L4...which meant he would walk, with some assistance), blood work, sonograms, and EXPO marker drawings were shared. Packets were given, sleep was lost, and prayers were shared. This was a Tuesday...they needed my decision by Thursday.

I remember laying in my hotel bed, sobbing and praying to God that I would know what to do. I remember my prayer going something like this:
"Heavenly Father, I have a big decision to make tomorrow. As I have heard everything that can possibly go wrong, I am fully aware that the outcome of this surgery is in Thy hands. There is a possibility that Rowan could die. They had me sign a paper stating that if the baby went into distress, that they should try to resuscitate, but if he is suffering, to make him as comfortable as possible, and let him die. Father, I don't want this baby to die. Quite frankly, I don't want him to be born extremely premature. The repercussions from pre-maturity are much worse than spina bifida itself! I don't care if Rowan won't be able to walk, as long as he is born healthy! The results of his condition do not bother me, as long as he is born healthy and strong. But yet, I know that my life is in Thy hands, and Thou dost know the outcome better than me. If I am to do this surgery, please grant me the peace to sleep and have faith in Thee." And with that, I was overwhelmed with a sense of peace, and I knew that the surgery was the right thing for Rowan and the right thing for me.

Thursday morning comes along, and Rachel and her perky self, sit down at the table with a big smile and ask what our decision is. Logan and I had both come to the conclusion that all would be well and that the surgery would give Rowan the best quality of life he could have. I was literally doing ALL that I could do. With that, Rachel whisked off to get the surgery scheduled and we were set to get surgery a week from that day. The next Thursday, which would be February 12, I would be admitted to the hospital and the surgery would be performed on February 13. They had an opening for Tuesday come up, unexpectedly, a family had backed out, and offered the position to us...but I declined because I wanted to go home for a bit, spend some time with Logan, and then be operated on.

The next few days were spent packing and mentally preparing for an adventure that I had no idea I had signed up for.

My-elomeningocele-Story Part 1: Finding Out

This past year has been a whirlwind of a life change for the Laycock family. In fact, it has almost been a year to date since I last blogged. Since then, Logan and I found out we were pregnant and have added a beautiful baby boy to our little family. But, with this beautiful addition comes a rather interesting (to say the least) story of how our little guy came to our family. Because of the length and detail, I will blog this story in several parts as to make it an easier read.

So let's begin with the Finding Out.

Logan and I had just spent an amazing Christmas vacation with my side of the family in a Cruise to parts of Mexico and the Carribean. It was quite the adventure; snorkeling, swimming, bartering with the natives, getting sprayed with this weird hand "washy-washy, happy-happy" spray stuff every time we ate, and watching both mine and my sister-in-law's bellies grow with our beautiful baby boys inside. As the trip came to an end, and my belly was actually starting to get bigger, Logan and I were anticipating my "20 week" appointment to do a 3D photoshoot and video of our beautiful little Rowan. 

My 20 week check up had to be postponed due to the cruise and so on January 20, 2014, a Monday, I attended my "20 week appointment" although I was 22 weeks along. I did it on purpose, kind of, so that we could really see our baby boy and really get good photos of his cute little self.  Logan, Lisa (Logan's mom), my mom, and myself all attended the little video session photo shoot at the doctor's office that beautiful Monday morning. The nurse ushered us back into the big room, almost like a little theater with the dim lights and big screen up top, and had my lay down and expose my little belly. The hot jelly was spread and the technician began searching for our little Rowan. It didn't take long! We started with video of his skull, which, looked a little bit like an egg/lemon shape, but we didn't think anything of it. "Oh look at that little egg head!" my mom cooed, and me, at the same time thinking "It must be because his head has been in the birth canal for a little while". All the while the technician is furiously taking pictures and immediately moving to pictures of Rowan's spine...camera moving up and down, up and down at every which angle. More pictures of his head. More pictures of his spine. I remember seeing a dark patch around the lower end of his spine, but also thinking how beautiful his spine was. There could be nothing more perfect and there could absolutely be nothing wrong with my little boy. 

Strangely enough, with all the pictures that were taken and printed, I only got 2 and the doctor got the rest. We were then ushered into another room to wait for my OB and the results of the ultrasound. We wait, chitchatting about the pictures we saw, thinking how strange it was that I only got 2 photos, and then the door opens. Dr. Young comes in, looking a little more serious than usual, and says something like this: "Well, your ultrasound results show a possibility of a problem with your baby. It looks like he might have spina bifida." At that moment it hits me in the gut like a semi-truck. Something wrong? With my baby? Spinia bifida? All I could think was, "Spina Bifida...words that mean so much to someone who knows so little." I question Dr. Young over and over of how sure he was. He said "might", a lot hangs on that "might" until he finally let the hammer down and said Rowan had spina bifida 100%. He then said he could not longer treat me, that I was a high risk pregnancy and was going to refer me to a specialist right away. He then asked if I wanted to call and make the appointment, or if his office should. Duh, the office. Other doctors don't listen to patients, no matter how grave the situation, but when an office calls, it's taken care of right then and there. Before he left to make the call, he then explained that spina bifida occurs within the first 18 day of GESTATION, it's a neural tube defect, an usually occurs when either the mother or baby does not have enough folic acid in their systems. Amidst all of this, I did need to remember that this wasn't my fault, it just happened. Luckily, I never did blame myself. All my sadness and heartache was for my baby. I never blamed myself, and I knew, in my heart, that news like this was going to eventually come. From the very start of my pregnancy, I had a feeling that this baby was going to have something different...that he was going to be special needs. I had thought Down Syndrome, but when Spina Bifida was the diagnosis, it was almost like a saddening peace that settled over me. One, my suspicions were confirmed, and two, my baby has spina bifida.

This whole time, I kept a strong face...maybe a tear or two trickled down, but nothing like an ugly woman cry. That came after he left and the door shut. I think he knew it was coming because all Dr. Young said before he left was, "Take your time. Take all the time you need." The door closes, I buckle over and my mom jumps up to hug me. My husband came over later after he composed himself from having his share of crying. And then we cried together. Long and hard. The mothers then cried and we all cried together. Never were there thoughts of, "why us?" or "how could this happen?" or "why did the Lord do this to us?" Never. They were thoughts more like, "what is his quality of life going to be?" and "will he need a wheelchair?" and "will he ever walk? Swim? Jump? Play?" and ultimately, "what the heck is spina bifida anyway?" The only question that we could answer immediately was "what the heck is spina bifida anyway?". All the other questions will be answered in time. Patience, right?

The appointment with the specialist, Dr. Robert Ball, was made for the very next day. To prepare for whatever he had to say, an immediate family meeting was called that night for a special prayer to be said, and Priesthood blessings to be given to both Logan and myself. When everyone met, no one really knew what was going to be said. My side did, because after the doctor's appointment, Logan had to go to work and my mom didn't want me to be alone, so she brought me over to her house. As my sisters and brothers asked me how the appointment went, I didn't say a word. I just went upstairs, laid down on my mom's bed, and cried. My mom was the bearer of the news, and all of them cried too. Nonetheless, when Logan told everyone at the family meeting what we had learned that day, everyone cried all over again. But prayers and blessings were given, and Logan and I headed into Dr. Ball's office with only faith in our hearts.

(P.S. Our video? The one that we had paid for to get live footage of our little guy? Yeah, it was edited to only show little parts of his body like his arm, hand, and leg. When I went home and watched it, I felt so robbed. The technician must have thought she was sparing us the pain of reliving what I am going to share next, trying to give us some normalcy? I don't know. All I felt was anger. Anger that she had edited the film and had "edited" our baby. I loved my baby no matter what...how dare she make that call! Oh well...water under the bridge right? That should have been among the least of my worries...)