Peter's Birth Story

Stories like this seem impossible to start. There is really no way to adequately describe the fear, hope, frustration, anticipation, et cetera, that filled our minds as we prepared to bring Peter into the world. By the time I had reached my third trimester, Derek and I had already researched every aspect of spina bifida, the birth, and the NICU experience, yet we still felt a little hopeless. Although dozens had offered to connect us with other families going through the same thing, I remember thinking (and often expressing) that the only real story that could help me feel more peace was to know exactly how things were going to happen for those first few weeks at OU Children's Hospital. I hope that this story can bring other families who are on a similar journey some comfort.

Preparing for Delivery:

On April 6th, I had a routine doctors appointment to check the baby's development and also my progress. Derek felt strongly that he meet me at the hospital to attend the ultrasound, so we planned on that. When I got to the office, however, it was a TOTAL circus. I had tried so carefully to arrange my appointments (and subsequent NICU tour) in a way that would make it easy for Derek to be there, but because the office was so busy they decided to rearrange my appointments. Unfortunately for them, they tried to lessen their own blame by explaining (in front of the whole lobby) that I must have gotten the appointments backwards and that my husband was late. To which I responded (in front of the whole lobby), that I had been planning for weeks for this appointment and that I knew exactly when it was, and that their incompetency was disrupting the plans for my other appointments at the hospital. Derek arrived just in time to witness the hubbub after the commotion I had caused and they whisked us away to the ultrasound. The ultrasound tech was nice enough, but when I heard his little heart beating I just completely broke down. I felt like I had failed that little baby by giving him an imperfect body, and I felt angry that any plans with the hospital I had made to try to prepare for his birth were being frustrated. Because of my obvious emotional distress (read: because I was balling like a big fat baby) the ultrasound tech just got a few measurements and sent us on our way. She probably thought she was helping, but that made me even more angry because of all the effort I had taken to try to make sure Derek could be there. While I waited for my OB appointment, I told Derek he should just leave and go back to work... but then he said that perhaps the feeling he had meant he needed to go to the OB appointment. Honestly, I thought this was ridiculous and was going to make me feel even more awkward. I tried to get him to go several times, but he insisted that he really felt he needed to go to this appointment. Cue eyeroll. 

The appointment began normally enough (aside from a few other frustrations that I won't say here), but then things got a little quiet and my perinatologist came in. He explained that because of several weeks of high blood pressures, I was diagnosed with gestational hypertension, and that I would need to deliver at 37 weeks. I remember, as soon as he said that, making eye contact with Derek (our mouths equally agape) and realizing that he was right all along! I was absolutely so glad he was there and glad that he was prompted to stay. This was a major shock to us both. I was already 36.5 weeks, so this meant that I would deliver in just FOUR days. They gave us just a few hours to discuss if we wanted to still go forward with the vaginal birth I had wanted or the c-section they were recommending. Not having enough time to go to the temple, we went at got shakes at McDonalds (ice cream is next to holiness) to discuss our options. Because of the additional complication of the hypertension and likelihood of needing an emergency c-section anyways, we decided to follow the doctor's advice and have a planned c-section. That was a thought I had despised for the longest time because I was so afraid I wouldn't be able to have as many children as I wanted afterwards, but for the first time, it felt like the "right" decision. I think this peaceful feeling surprised us both because we had been praying so long without any clear guidance one way or the other...but that is one huge thing that I've learned through all of this: As long as we are faithful, God will give us all the answers we need when the time comes.

D-Day:

Things I remember from before the c-section: Derek singing "The Morning Breaks" for (what felt like) the entire drive to the hospital, being so thirsty I thought I would die (no food or drink before the c-section!), and waiting a LONG time. As a matter of fact, my procedure was pushed back approximately 5 hours. FIVE HOURS I WAS WAITING THERE. Because we weren't able to meet with our neurosurgeon before my scheduled c-section, the nurses had said they would bring someone from neurosurgery down to explain how things were going to go. That was such a relief to us because no one had given any clear indication of when things would take place. Relief quickly turned to frustration when they were unable to find an available neurosurgeon so they brought someone from pediatrics who told us the same general timeline we had heard all along. UGH. Both Derek and I expressed our frustration and concern that, although this c-section had been very well planned, there were no plans for our baby's surgeries that we ALL knew he needed. The doctor didn't really give an explanation and just said that they could make plans once he was here, and left. 

Looking back, this all seems logical, but for two very worried parents, there was no logic in that! We sat there quietly fuming for a minute before my prep nurse popped her head back in. She was such an angel...(in the craziness of the day I don't remember her name at all, but she was awesome) "I was just listening to the conversation you just had and I just wanted to explain some things that will help you. You have had to be really good planners to be able to get through this pregnancy, but once baby is here, don't have any plans-- just let things happen. We don't know what will happen once he is here or if other babies will need surgery more immediately that your baby so we just can't plan in advance. I know it's hard, but my advice to you would just be to relax and let things play out. We will take care of you." This was exactly what I needed to hear, and it was really the only thing to make me feel a bit better that day. She said it in a very loving way, as if she could legitimately understand that my heart was just breaking for the survival of my baby, and that meant the world. I think this was the best advice I got my whole pregnancy, and it is still true now. There is only so much planning can do, the rest we really do have to allow ourselves to let play out, trusting that there will be people to help us when we struggle. 

It's Go Time:

After that whole encounter, things actually started progressing pretty fast. The nurse came back to give me my various meds before the c-section and explained how things would go. One of the anti-reflux medications they gave me was reglan, and that was a freakin' monster. It sent me into a full blown anxiety attack. My heart beat had gone so high (180+) that I was setting off all sorts of alarms and I was certain I was going to die. Right when my death seemed imminent, they had me say goodbye to Derek so they could wheel me down to the OR (he would meet us later). That was the worst part of the whole procedure. At the time, I regretted not writing Derek some sort of letter should I have died in there...it was bad! I was told not everyone has a panic attack as strong as me, but I was seriously thinking it would be better to take my chances with aspirating than have that again!

I had read online prior to my c-section that the one person to make super good friends with in the OR is the anesthesiologist. This article had said to narrate to them what you are feeling and anxieties you have (because they have something to help *hint hint*). My anesthesiologist was really nice and seemed very sympathetic to my reglan induced panic. She shot something into my IV bag and I felt much better after that. When I had a bout of nausea a few moments later, she shot another thing into the IV and I was as happy as a clam. Now while all this is going on, I've got tubes coming out of like every opening, I feel a strange pushing sensation in my legs (that's what I wasn't prepared for. It was just the nerves they were messing with in my stomach making my legs feel weird, but it felt like someone was pushing really hard on my knees), and I can see the awkward reflection of my lower half in the reflective lights above. Ugh. Poor doctors. 

Our Baby Boy:

Once they brought Derek in, it was just surreal. It seemed too easy to get a baby this way (all things considered). After a few minutes of what felt like people shoving bowling balls into my stomach, out came our beautiful Peter Arie Askham! I had loved the name Peter for several years. Both Derek's and my family have some connections to the name Peter, and it was a classic name that is still less common but easy to spell. Before we even conceived, I felt as though this little spirit joining our family would be "Peter," and even referred to him as such before we even knew if Baby Askham was a boy or girl. When we found out he had spina bifida, I took great comfort in referring to the stories of the Apostle Peter, and how he had the faith to walk on water, and when he couldn't walk any more, Christ reached down and saved him immediately. When I was so heartbroken about Peter's condition, I just pictured Christ reaching to save my Peter just like he did for Peter of old. It's a strong name with a lot of positive pop culture references and it suits him perfectly! The name Arie, (pronounced eye-ree) is after Derek's great grandfather, who was dutch. It was also a name I had loved from the moment I heard it around Derek's family's dinner table, and the more stories of Great Grandpa DeHart I had heard, the more I loved the name. It came as a surprise to Derek when I had put it on our name list, but I thought it was a lovely name to honor our Scandinavian heritage while also keeping Derek's family's tradition of incorporating family names into the naming of a new child. I never knew Derek's great grandpa, but there was something in the spirit of the name that just felt right. We kept the name a secret from everyone (including the nurses) until D-Day. It was so fun to announce his entrance!

When I saw his cute little pink body, I just thought how perfectly his name seemed to fit him. His cry was immediate and he had no need to be suctioned. He was nice and pink, and just beautiful. The nurse gently swaddled him and brought him to my face so I could see him. Big blue eyes and a cute little nose stared up at me! They said I could kiss him, so I gave him a quick kiss on his perfect red little lips, and they whisked him and dad away to the NICU.

When I pictured myself living this moment, I thought I would be inconsolable. I had bad dreams where I was just screaming for my baby and asking to hold him for just a minute. I was sure that I would die when they had to take him away.... but what I felt? I was amazed and in shock. I remember thinking over and over that I was really a mom now, and that my baby is somewhere in the world. I wasn't sad...as a matter of fact, I was so happy! I did it! I didn't think I could survive this moment but I did! I know that the peace I felt then was a direct answer to the prayers that had been said on my behalf. I felt confident that angels were protecting and aiding my baby and I took the nurse's advice and just let it all go. It was wonderful, miraculous, and peaceful.

Seeing my baby for the first time

Timeline:

The days and weeks that followed felt like an eternity at the time, but are now really a blur. I kept detailed facebook updates so I am not going to go into details here (I am going to make a summary of all the updates by month in a different post...someday), but just to keep the main events in one place, here is the timeline that I so desperately wanted to know in advance... but God had other plans ;) Maybe it will help calm someone else someday. 

April 11th

• Peter is Born at 1:12 pm
• I don't get to hold him, but I get to see him for about two seconds
• Derek goes with him to the NICU
• By the time I get to go up to see him it's getting dark outside... maybe 7pm? But the time really did pass so quickly because I was out of it
• This day was totally doable

April 12th

• Peter has his back repaired at 12:30 pm
• Before surgery, we each got to hold him across our laps. MAGICAL!



My first time holding Peter before surgery.

• We had to wait about two hours from dropping him off to seeing him again in the NICU for recovery. During this time I was actually in a lot of pain and went to rest in my room. Our wonderful neurosurgeon came to my hospital room to tell us how the surgery went instead of just telling Derek. I thought that was really sweet.

April 13th-14th

• Peter stays in NICU while I am still recovering from my c-section. I get to visit him whenever I want.
• Visiting is fun, but I was not allowed to hold him (or really adjust him that much) until the 14th (which was the best day ever!)

Holding him without a mattress for the first time

April 15th

• I am released from the hospital and the NICU team allows Peter to be released to the "NICU Village" where Derek and I could stay with him while he still gets basic care. 
• Peter has a desaturation of oxygen levels, turns blue and needs oxygen and stimulation. This was later believed to be a symptom of Peter's increasing hydrocephalus 

April 18th

• The neurosurgen (Dr. Gross) comes back to the Village after the weekend and decides that Peter's head measurements indicate he needs a shunt. We go back to the NICU and I cry a lot.
• Even with the sad news, I got to hold Peter again on the 18th and they allowed me to breastfeed him for the first time. It went really well!

One week old!!!

April 19th

• Peter has his VP Shunt placed. Again this surgery takes about an hour and a half, but it goes smoothly and we are all much happier without seeing the oxygen desats.

April 20th

• The word "discharge" is thrown around for the first time! Peter is almost ready to go home, but because of his prior oxygen levels, we have to watch him for five more days.

April 21st

• The doctors decide that Peter is doing so well, they plan to release him with an apnea monitor (to check sat. levels) the next day. I told very few people that we were possibly leaving the next day because I didn't want to get anyone's hopes up.

April 22nd

• What do ya know.... THEY MEANT IT. This was an extremely busy day with appointments from 6am up until 1pm when we were discharged. There is no way I can prepare any other moms for this day. It's like you wait and wait and wait for it to finally get here, and then when you realize that they are sending you home with this baby that has all of these needs (except you don't get to keep the monitors, medical supplies, etc.) and it becomes completely terrifying!

We're going home!

After we left the NICU, Peter still had restrictions. He had to be catheterized once a day (which we still do at 10 weeks old). He also had to sleep on his tummy, couldn't be bathed, and was only allowed to be on his back or side for 30 mins at a time. Thirty days after his back repair, those posture-based restrictions were lifted, making our lives much easier and more normal.

In the days since, Peter has had the following treatments:

• Frequent weight check ups for slow weight gain
• Leg casts to correct Bilateral Vertical Talus (3 weeks of casts, currently in AFOs at night only, likely needs more casting and possibly surgery in a few months when he is bigger)
• Brace for hip dysplasia (3 weeks and counting)

Casts at one month!

Dysplasia brace at two months!

And in the next couple months will have further testing on the kidneys and brain to determine how effective his current interventions are. We are hoping that the shunt will be functioning properly (seems like it is so far!) and that he will demonstrate neurologic control over his kidney and bladder so we don't need to cath any more. So we will have to keep you posted!

Being Peter's mom is so much fun. I often forget there is anything abnormal about his body or challenges which is both a blessing and a curse. I just see past all of those things most of the time, but then something someone says or a doctor's comments will all of a sudden pull me out of the reality that everything is fine (it feels sort of like that part in Sixth Sense where [spoiler alert] Bruce Willis realizes he was dead all along and he can't open the door or hold his wife or talk to those he loves and it's like *MINDBLOWN*) and that is what hurts the most, it's almost like getting the diagnosis all over again! Some days that sadness lasts minutes, and other times it lasts days. The more that I feed into it (worrying about the future and what Peter's function will be) often the longer it sticks around... but it also feels wrong to ignore those feelings and act like everything is fine. So I guess I am learning to trust God's plan (learning...and failing!) while also trying to allow myself a little room to grieve once in a while. Still working on pulling myself together over here, but in truth, Peter is worth all of it! <3

Family of THREE!

The Big 2-4 and our March Update

Quick Family Update:

• Derek has been working so hard at his new job and is really enjoying it so far! 
• I have been hard at work preparing "every needful [and not so needful] thing" for the baby. I am 32 weeks and 4 days TODAY!
• Nursery is coming together... stay tuned for the reveal!
• Derek has been having a lot of GI tract issues recently, so please continue to keep him in your prayers. I think the change of environment, the stress of our growing family, and working 10 hour days at a desk job has really caused some problems for him, but it is making him quite anxious. Poor guy. 
• Derek and I have callings in our new ward! I am the assistant secretary in the Relief Society and Derek is the first counselor in the Sunday School presidency. We were also asked to give talks this Sunday on the atonement. I am pretty excited!
• Derek leaves on his very first business trip soon. To me it all sounds pretty exciting, but he says he would rather be here with me. Isn't that sweet?

Yesterday was the big day- my first appointments at OU Children's Hospital in OKC. I have honestly been dreading this appointment since it was scheduled. Not only was my last appointment one of the worst of my life, I was also not looking forward to a potential heartbreak on my birthday. Yesterday I could barely eat and had such trouble going to sleep because I was so anxious! When I finally did fall asleep I had a horrible dream that the ultrasound showed that the baby's defect was much worse than we thought and that he wouldn't be able to live past birth. As I finally started to realize it was all just a dream, I was both relieved that I got a second chance at the ultrasound as well as terrified that what I might have dreamt was a premonition of what was to come!

I laid awake for about two hours and got up as Derek was getting ready for work. Despite my fears, when my feet hit the floor this morning the words from Elder Busche's talk came to mind -- "Embrace each day with an enthusiastic welcome, no matter how it looks." I decided from that moment that I was going to make this day awesome! I curled my hair, put on some mascara and I was feeling great and ready to go! At this point, I left our master bedroom only to see that my husband had beautifully decorated for my birthday! Cute banners, crepe paper, cake... the whole nine yards. I know he has been so tired working long days recently too, so his sacrifice to make me feel special was even more meaningful. He is my perfect companion.

6 am photo shoot. Derek's decorations look so so cute! He knows what the ladies want.

Derek got in an hour or so at work and then met me at OU for the ultrasound. I don't know why I was so hesitant about transferring over there, this place is like a luxury hotel and everyone is so kind! Our ultrasound technician was super sweet and happily humored us with all of the fun details parents love: pictures of the toes, hands, face (although baby was head down so no 3-D images this time)... she could even see hair in his head! Incredible. Of course we also saw the lesion, which is always a bit of a downer, but even in the sad moments there was just an overwhelming feeling of peace that this was the best place for him to be born and that we would get it all taken care of. For other SB parents who might someday find this and want to compare stories and others who are interested, our son's lesion is like a cystic bubble that measures approximately 6cm in diameter. By Spina Bifida standards, this is really quite large. Thankfully, the size of the protruding defect itself doesn't have any correlation with function, so judging by the location (sacral, believed to be somewhere between S2-S5) as well as how closed his spine really is (no sign of scoliosis and definitely a very small opening in the spine rather than a large gap) he has a great prognosis.

This is the Children's hospital where our little one will be born. It is the biggest hospital I have ever been in. 

This is what it looks like on the inside. Lots of comfy sectionals for families to hang out, a cafe on the next floor, and a cool rainbow bubble wall. My appointments yesterday were on the floor below this one.

Here is a picture of the world's cutest baby. I always thought moms just said that about there babies, but I legitimately think he is the cutest baby ever. In this picture he is in the head-down position (upside-down). His luscious lips are on the top left of his face, then a little button nose, and we see his right eye (the left side of his face is in shadow). He also has his little hand up against his chin. He already has so much character and was making cute faces, sticking his tongue out, opening and shutting his hands, and scratching an itch on his chin. 

We also found out that, though he does have increased swelling in the left ventricles from last time, his numbers are actually completely normal on his right side. The perinatologist explained that this had been the case in all of my ultrasounds (although, no one had ever mentioned that before). Unlike my last perinatologist who explained that "everything will just get worse," our doctor explained that at levels like 1.8 cm (1 and under being normal) on the left side, a shunt might not even be necessary. It is still considered enlarged, but apparently it's NOT as bad as we might expect. As far as not getting a shunt, I am taking that with a grain of salt of course, but how nice to have a little hope! In all other ways, our 32 week baby is looking very healthy at approximately 4.5 pounds. His last height measurement was about 17 inches long, but now he is too balled up to get a good estimate on his size. He is moving a lot (including clenching his little toes....THAT MEANS HE CAN FEEL THEM, PEOPLE) and we have a lot of hope for a positive future.

After our ultrasound, I went to meet with my OB (and consequently, a lot of other really smart people who are apart of my team now). She has worked with several spina bifida moms and seemed to know her stuff. She was very kind to me, and I could really see she was making an effort to phrase her words carefully to give me realistic hope about what's to come. One of the major things we discussed today was my birthing options. Both she and other specialists really believe a c-section will be better for baby. The main concerns include my first labor/delivery experience being a total wild card (who knows how awesome I am at having a baby until I do it, right?), possible rupturing and subsequent infection of the lesion on his spine after a vaginal delivery, and the research from 1990 that found that children delivered via c-section perform better than those who do not. I am going to be honest, I hadn't thought a lot about the first two points before our discussion, but I really don't feel super inclined toward a c-section because of a study done in an age when most cases of spina bifida weren't even diagnosed until after birth, which makes a huge difference in how the hospital is prepared for the situation and what surgeons perform the repair. Because of my own beliefs as well as my inclination toward a vaginal delivery, I spent a great deal of time in a "discussion" with these doctors about what really was best. They were really sweet and said that I was awesome for even caring. They also realized it wasn't what I wanted, so they really encouraged me to make my final decisions with the baby's surgeons. I absolutely love everyone I have met and I love that they take the time to discuss their research with me and treat me as a human capable of making smart decisions. Multiple times they encouraged me to just think of this place as "home"....and it's not hard to do! It seems weird, but that hospital has an amazing spirit. These doctors have been given the gift of healing Christ's little ones just as Jesus would if he was on earth today.

Got my flu vaccine and t-dap. Anything for da babaye. It won't really be flu season by the time the baby arrives so Idk how relevant that will be, but I did think that even 60% effectiveness was worth a shot (literally). The t-dap (whooping cough) though is super important. Is it a crazy new mom thing to ask that people who plan on visiting the baby while he is recovering all have their tdap? I just think his little body will be working so hard to recover that I'd hate for him to get exposed to whooping cough on top of it! But if that really seems crazy just lie to me and tell me you went and got it.

In other baby news, my doctors also said that it will be better to schedule an early delivery, around 39 weeks, to try to avoid anything going on unplanned. I will also be meeting with the OU physicians every week to keep an eye on my labor as well as baby's growth. I can't believe that we are looking at about 6 weeks now until he makes his arrival!

I filled the rest of the day with fun and wonderful things. Talked to some family members, sneaked some remnants of cake that Derek leveled off to stack the layers, watched some HGTV, took a wonderful nap, went to a few minutes of a Relief Society activity, and then met up with Derek for our fun celebration! We got gyros for dinner, opened presents (including a fancy sewing machine that I have been eyeing for months...baby crafts await!), and finished the day off with some cake and cuddles. It was just a WONDERFUL birthday!

Oklahoma gets a bad wrap, but I absolutely love it here. I saw this sunset on my way to church today and I had to take a picture!

Grandma Warner made this amazing little hoodie for Baby Askham. The stitch is tons of little tiny loops so it looks like a lamb! I can tell it took hours of careful work and cannot wait to get the little one in it. His great grandma spoils all of us!!!

Blowing out all 24 candles! Almost started a fire! ;)

Both Derek and I love funfetti cake. It tastes delish AND looks so happy. After we are our slices, the baby was so excited and jumped all around. Derek says "He really IS my son!" Hahaha!

After today, I am feeling really positive and excited. As I was eating lunch, I caught myself thinking of how grateful I am for this pefect baby and that I love him just the way he is. I guess normally those sorts of thoughts wouldn't be a big deal, but for me it was the first time I legitimately felt complete peace about our situation and could just bask in the love I have for this little guy. I don't think I will ever love this struggle or the challenges it causes for my son, but I love him so completely that the way I see his birth defect has really changed. He is my little boy, and I love every bit of him. I can't imagine my world without him in it, and I wouldn't take anything back. We prayed so hard for this baby to come to earth, and I am so glad we are pregnant with him. After receiving the diagnosis, I remember feeling like I would be somehow less of a mom and that my "mom" life would never be like everyone else's. In my moment of clarity today I really saw how wrong that thought was. Our child needs a mother, and it is an honor that he somehow thought I was capable for the job. Little baby Askham, we love you and are so excited to meet you!

An important infographic.

Thanks for all the awesome birthday wishes! Sending an added measure of peace and love to each of you as you strive to meet your daily challenges.

Little Update Lotta Feelings

There isn't a whole lot going on right now, but I figured I would give a little update just in case anyone who is going through a similar thing someday stumbles upon this blog. I have also had a really hard time writing ANYTHING in my personal journal about this whole pregnancy experience (I am sure several journal-minded people just want to shake me after reading that!). Any time I sit down in the quiet to write my thoughts, I just end up crying... I figure once this pregnancy is over I can just print out my blog posts and tuck them in there. This is a hard thing for me and I am trying to remember that someday soon it won't be this way and I will want to reflect on how I grew...but I also have to balance that with NOT allowing myself to spiral into a sad, pensive despair in the mean time. I am able to keep it together a little better when I try to communicate my thoughts to others, so here I am in all my unpolished glory. As a disclaimer, I will say that this is a very personal and spiritually minded post, so if you aren't down with that, maybe this isn't going to be the most interesting of updates to you. This pregnancy has been as much of a spiritual process to me as a physical one, so to me it's all one in the same.

The past week has really been the hardest for me since probably the first week after the initial diagnosis. I was feeling guilty about that. I feel like I had made so much progress and I was feeling so faithful and confident, but now I feel sad. Guilt really describes a lot of what I feel recently. There is a horrible horrible feeling of guilt when I consider that there could have been something I could have done to influence this pregnancy. Luckily I have really overcome that feeling this week (really a whole discussion on its own, so I will save that for later), but that really is the worst of all the feeling I feel in a given time period. I am trying to remember that I have like a million times the hormones raging through me and it's very possible that I am still just as strong and confident underneath this layer of "sad."

I was really in a terrible place until we had this amazing lesson in Relief Society that reminded me that sucky trials are a part of the mortal experience. The teacher read this commentary, explaining that successfully weathering these trials isn't about a "positive attitude," but instead remembering the qualities of our Heavenly Father. Instead of trying to face all of life's horrible unfairness with a smile and "this is TOTALLY fine!" attitude, we need to remember that we knew that this mortal journey would be hard, we accepted these challenges, and we knew it would end up okay because the Savior would redeem us from every pain, in addition to every sin. Somewhere along the way I forgot that I had permission to totally hate this experience. Once I remembered that feeling all these horrible feelings is a part of our mortal journey and that Heavenly Father sent His son to succor and save his people from things just like this, I suddenly felt like I am doing a good job. I am just trying my best.

This recent emotional experience really stemmed from my trip to a new perinatoligist who simply wasn't as hopeful for our child as all my other doctors had been. Over 90% of parents who receive a similar diagnosis terminate their pregnancies by this time. She didn't say it exactly, but she seemed to think it was selfish of me to prolong my child's life and his suffering. Any time I tried to be positive, she would explain that it will get worse. That his brain will be more damaged (up until this appointment, baby's ventricles were measuring in the high range of normal, but at this 28 wk appt they were officially enlarged at 13mm) his back will be more painful, his legs will stop moving... At the end of the appointment when she applauded me for being so brave during the ultrasound, I told her that I thought it was worth it just to be able to see his little face again. She responded with a smirk and said "good for you for being positive." UGH! I had to try really hard while she was talking to remember all those promises I had already been given, that our baby will grow to be strong and happy and that everything will be okay. I am sure the love I feel for my baby will grow unfathomably once he is really "here," but I also feel I have been blessed with a ridiculous amount of love for him already. I can't imagine my life without him. It hurts me when I feel people imply that it is better that he not be born. Do they not see that he is already a real human being who gets hiccups when I eat cookies and dances to music? That sort of mama love basically made me want to reach across the ultrasound machine and punch this lady. This is probably the sort of statement that makes doctors hate certain patients, BUT: I am convinced she knows nothing about my son. This kid and I have had a good connection from the beginning (you know, when the doctor was wrong about the gender and I totally called it), so I feel pretty confident that I know what I am talking about.

In addition to the rough appointment, I was also informed that I would have to switch all my care to a new hospital. I felt completely devastated, mostly because I trust my current OB so much and he was SOO hopeful. But after calming down in the days since, I know that delivering at OU really is the best. Not only do they have the best SB care in the state, it also means that we won't have to be separated and he can be delivered, have his surgery, and stay in the NICU all in one place. I will be more likely to see him sooner and more frequently, and Derek can easily check on the both of us while we recover. In addition, this hospital is very close to Derek's work, which, in the event of a long NICU stay, would allow him to come visit as his work schedule permits. I am really excited to go to this new place, actually!

In between the moments of frustration and sadness, I still have been able to feel a great amount of peace. I was able to go to the temple with a group of sister missionaries (including one who was our good friend in Pullman before she left!) and I really loved it. As a matter of fact, I didn't want to leave. I have been working hard to get some family names done, and I feel such a better understanding of our eternal nature as I do their work. I was running a little late to the temple and I felt like almost everything was going wrong! I had this family name that needed printing, but that took longer than expected, I lost my directions to the temple... I was afraid that I wouldn't be able to have enough time to take this name with me after all. I just prayed and asked Heavenly Father that if it be His will, there would be time for me to do the work for this family member. As soon as I got inside the temple, everything worked out perfectly and I was able to accomplish what I had set out to do. Not only that, but I also got the impression that this ancestor of mine was just as concerned about her work getting done and was going to do everything in her power to get it taken care of. As I reflect on these experiences when I do my family history work, I have realized I feel such close bonds with their spirits. I believe they help me just as literally as I help them through temple work. They remind me, not only of the fact that life extends beyond this mortal experience, but that our spirits are inherently powerful and connected. When we understand the reality of the eternal nature of our souls, our trials during this earthly period don't seem so bad.

I had been thinking about all of these things when I had the opportunity to receive a priesthood blessing. I am so glad there isn't some rule about how many of those we should get in our lifetime because I would surely surpass it. I have been given such wonderful answers to prayers on my knees, but I feel like nothing compares to hearing words straight from Heavenly Father through a worthy priesthood holder as directed by the spirit. Through this blessing, I was promised that there are many family members on the other side of the veil who are busily preparing things for my son's arrival, and that they will watch over him and guide those around him when he arrives. I cannot describe the joy and comfort that that thought has given me over the past few days. I know there will be good doctors and nurses who will care for my baby when I can't be there, but I honestly felt so relieved to know that those who I love and trust will be there to guard him and inspire those who are working on him when I can't be. In the quiet moments, I feel myself protected and loved by these same angels.

I am learning to trust in the atonement. I think that was the aspect that was missing in my relationship before. I feel like I have a working understanding of our redemption from sin, but it's been the healing from heartache portion that I really have had to study. I think I often would "cast my burdens on the Lord" during sincere prayer, and then at the end of the prayer just pick them all up again and go throughout my day still feeling bogged down. I am learning that if I truly want to feel freedom through the atonement, I have to put it in God's hands and just let it go! Letting go involves accepting that I don't know what I am doing, that I don't know what is best, and that I am okay with not knowing the solution (aside from what is revealed through the holy ghost). Society would tell us that this whole concept is ridiculous and that relinquishing control simply means we are running through life with our eyes closed... but society is also unhappy, unsuccessful, and ignorant of eternity. So I am really fighting my inner "natural man," and choosing to just release it all. I am grateful for the wonderful support our family has been given. It is so great to feel your love, even when it likely feels awkward for you to have to put up with my emotions and constant talking about anything baby/pregnancy related (yes I am aware I do it, no I don't know how to stop it! I pretty much only think about babies!). As always, thank you also for keeping all three of us in your prayers. I know they will heal our child and heal our hearts.

Greetings from Oklahoma City!

The past two weeks have been a complete whirlwind! I feel reminded of the scripture from first Nephi, where Nephi explains that he writes about his life to "show unto you that the tender mercies of the Lord are over all those whom he hath chosen, because of their faith..." We have seen so many tender mercies throughout these past few weeks that really confirmed to me that the Holy Ghost was directing us and that we were on the path that most pleased our Heavenly Father. 

Leaving everything we have known in the midst of our greatest trial yet is a terrifying prospect, especially when I knew it would also be hard for our loved ones to send us off. I spent a great deal of my time just before the move silently reflecting on our decision to move to OKC and praying for guidance on the matter in light of our recent news about Baby Askham. In one of these moments, the scripture from 2 Timothy 1:7 clearly came to me. "For God hath not given us the spirit of fear; but of power, of love, and of a sound mind." What a great reminder that fear doesn't come from Heavenly Father, but from the adversary (who wants us to be miserable!). When I get afraid, I just recite this scripture over and over in my mind and think about the choices I get to make (power) rather than the challenges that are forced upon me (fear). I think we are far more powerful than we realize. 

The days before the move:
After returning home from visiting my family for Christmas, we had a few days to get organized and finalize arrangements with Derek's work for the move. We had a wonderful time getting in last minute visits to our family in Pullman and our wonderful friends who have been so supportive. One wonderful surprise was the beautiful heirloom cradle Derek's grandpa gifted to us. He made it for his own children and now passed it on to us for our little one. 

The night before the movers came, I shed a few tears about leaving our wonderful little apartment, and then braced for the chaos of the next day.

Our last snuggle in our first place!

The movers took about four hours to pack everything and get it in the truck. Not only did they pack more quickly than I ever could have, they also insisted that I not even lift anything... long story short, I told Derek that I am never moving myself again... we need movers from here on out! ;) 

Arriving in OKC:
I know some people might think this is asking for trouble, but I had just been praying and praying that things would go smoothly during our move. I was feeling as though I had absolutely reached my emotional limit and I just couldn't bear any more stress. I feel so blessed because that prayer was absolutely granted, our plane flights from Pullman to Seattle to OKC went off without a hitch (which is a lot coming from two fearful fliers), nothing was wrong with our luggage, we were able to get our rental car in less than five minutes, and our hotel was fabulous. 

Sweet ride!

We took a day to rest up at the Residence Inn before setting out on some apartment hunting. We scoured the internet for some apartments that would work and ended up visiting the two top contenders. One of them (in Yukon, OK about 15 minutes from Derek's work) absolutely blew us away and we signed the lease a few days later. I would love to show off the new space a little, but I will save that for another post! 

The other apartment we had believed to be a "strong contender" ended up being absolutely terrifying. The second us two little white kids got out of the car, all these big black guys came out on to their porches to stare at us (needless to say, we don't fit in in the city very well...). I was pretty sure that we were about to be mugged, possibly during this apartment complex tour. The whole place was pretty terrifying (broken glass, slashed tires, questionable stains), and despite the "gated community", I was pretty sure I was more scared of the people inside the complex than out of it! When we got back into the car, Derek and I just looked at each other, shook our heads, and got the heck out of there!

About a block away from this apartment complex, I spotted a 7-11. I had silently been craving the most horrific pile of 7-11 nachos and a slurpee for about 3 weeks (no 7-11s in Pullman!) and when I saw this one, I just knew it was time! I told Derek that we HAD to go inside so I could get my nachos and he said that it seemed too scary (questionable activity going on between cars, people loitering and staring at us, a broken bumper in the middle of the road...). I teased him for being afraid (thinking I have been to scaryish 7-11s before!) and told him that we simply had to go inside. He laughed nervously but started to pull in anyways. Just then, a guy in all black pulled this black hoodie over his face and walked in the store (hello, Subway knife-weilding robber flash back?!) I told Derek I changed my mind and we got out of there as fast as we freakin' could! I almost peed myself from laughing so hard (which is easier when pregnant, but I digress). 

Adventures in Oklahoma:
Aside from almost getting shot on every corner of the city, we have enjoyed exploring our new home! Here are some pictures of our antics:

Does Hobby Lobby become less amazing when you have access to it all the time? I am not sure. I had so much fun looking at all the goodies and Derek pretended to smile for the picture.

Derek's Mom, Lisa, asked that I keep an eye out for fabrics I liked so she could sew some sheets for our cradle. I think I have decided I wanted some plain pastel colors for the sheets, but I happened to see this cute nursery rhyme fabric and had to take a pic. I might need to make a few pillows for the nursery out of this!

Our trip to Whataburger! I can see why people are fatter here, there is seriously amazing food on every corner! I was doubtful, but I loved it.

Out near the older part of Yukon is some pretty cool looking old stuff. I took this picture while Derek was driving. I love the lit "Yukon Mills" sign at the very top!

We don't have a washer and dryer for our apartment yet, so today we took an adventure to the laundromat. Do you have any idea how much more enjoyable laundry is when you have a nice place to sit and a huge table to fold on? No hunching necessary! Plus, it only took like $6 and you can get it all done in an hour (multiple loads at once!). Our goal is to purchase our washer and dryer before the baby comes, because with a set up like this, I am in no rush!

Family Updates:
One of our greatest updates is that my sister Hillary just had her beautiful baby, Henry Joseph, today! He is so cute and she looks amazing in all the pictures. Best of all they are both happy and healthy! Older brother Daniel is so excited to meet Henry. For all the trouble they will surely get into, I also know they will be the best of friends! Our baby is lucky to have two awesome cousins to show him the ropes! 

Our beautiful baby boy is getting bigger and bigger! His kicks are so strong that sometimes I scream out of surprise! It's really nice to have him as my little companion (even if it feels a little like I am hosting a parasite). I keep thinking of that sad quote from The Office where Michael Scott says something like "Someday I want to have 100 kids so I can have 100 friends." I just want to have ALL DA BABIES. I sort of hope that feeling goes away once the exhaustion of parenthood kicks in, otherwise this place is going to start feeling crowded. Luckily, third trimester is around the corner and I am pretty sure everyone hates the thought of another pregnancy then. 

Derek and I have been so grateful for the countless prayers, fasts, thoughts, and positivity sent our way. In a way I don't quite understand, we have seen how they have sustained us and given us strength through this hardship. I actually felt funny about calling our diagnosis of spina bifida our "greatest trial yet" at the beginning of this post because I feel like it has been......easy? That is so wrong to say, because it really has been hard, but I feel like this is a testimony of the amazing miracle that is the atonement. I don't believe there is any greater version of Hell for a mother than the thought of something happening to her baby. But through prayer, study, love, faith, and miracles, Derek and I have been blessed with the strength necessary to greet these challenges. Through Christ, we can all find rest from our heaviest burdens. 

My hands-down, go-to favorite scripture is in Alma 26, where Ammon preaches of the glory of God. He says:

11... But behold, my joy is full, yea, my heart is brim with joy, and I will rejoice in my God.

 12 Yea, I know that I am nothing; as to my strength I am weak; therefore I will not boast of myself, but I willboast of my God, for in his strength I can do all things; yea, behold, many mighty miracles we have wrought in this land, for which we will praise his name forever.

 13 Behold, how many thousands of our brethren has he loosed from the pains of hell; and they are brought tosing redeeming love, and this because of the power of his word which is in us, therefore have we not great reason to rejoice?

 14 Yea, we have reason to praise him forever, for he is the Most High God, and has loosed our brethren from the chains of hell.

 15 Yea, they were encircled about with everlasting darkness and destruction; but behold, he has brought them into his everlastinglight, yea, into everlasting salvation; and they are encircled about with the matchless bounty of his love

Whether we are referring to "chains of hell" brought on through our own choices or trials that are thrusted upon us, we can be brought to sing redeeming love.

Last time I posted, I discussed our options for surgery for our son. We found out after some detailed scans that our child's lesion is likely between S3-S5 (the lowest bones of the sacrum), giving him the best possible prognosis (likely no paralysis, but still with the possible need for a shunt and likely bladder issues). Because of this prognosis, we are not qualified for fetal surgery. Instead, baby will have surgery within a few hours of birth and will be in the NICU for a week or so (possibly more if doctors decide he needs a shunt). I said in the first post that I would be grateful for whatever option is given to us, and I am striving to be okay with having this out of my control. The greatest blessing I see from this is that Derek and I get to be together throughout our pregnancy, he will definitely be there for the birth, and that we have several months now to choose the doctors we feel will care best for our baby. There is a lot of scary stuff still to come, so we definitely appreciate your continued prayers.

In one blessing I received after hearing the diagnosis, one of the promises I was given was that Derek and I would grow even closer and more in love through this trial. This has been just the most joyous part of all of this! We appreciate each other more, make more time to help each other, we laugh together more, we have become more patient with one another, and when the feelings come and I wake up in the middle of the night to cry a little when I think no one is awake to notice, Derek always is there to quietly stroke my hair till I can fall asleep again. When I found out the diagnosis, I felt as though I would never be happy ever again. How wrong I was! The greatest happiness has come since that moment. I love being with Derek more than words can express, and I am so excited to bring our child home to his loving family. The best is yet to come, come what may and love it!

A New Life

Late in August, I looked down at my first positive pregnancy test. I remember squealing with delight at the two pink lines on our 88 cent test. For months Derek and I had wished, prayed, and cried for our little baby...and after what seemed like an eternity (but wasn't!) a new little baby was joining our family. It's only been five months, but that feels like a lifetime ago.

I received a phone call a little over a week ago that forever changed our family's life. The doctor explained that my latest ultrasound results were abnormal, that something was wrong with the baby's spine. I have gone through painful things in my life, but I will tell you that there is no pain that can compare to what I felt at that moment. Words like "abnormality" "spina bifida" and "cognitive impairment" bounced around my brain as I sat screaming on our living room floor. I had made an imperfect body for a perfect new spirit that had done nothing to deserve the physical and emotional pain of a difficult life. Derek and I cried together as we tried to digest the news. Surely there was a mix up...that this was someone else's baby.

There wasn't a mix up. We met with my doctor on Friday night. He went over his understanding of the ultrasound as well as talked to us about possibilities. To say we were heartbroken would not even begin to describe it

The wonderful news is that through answered prayers, blessings, and tender mercies, Derek and I have been strengthened and prepared to handle this new calling in the week since. More research has given us multiple options to help our child have the best prognosis. What felt like an unsurvivable trial for us has now become doable. I am convinced that no one could love this child more than we can, and there is no mom on earth who is better for this baby than me. We are going to do this! I still cry, but I cry because of the extreme love I have for this little person. I don't know if it is instinct or what, but the success of this child has become my ultimate goal. There is literally nothing I wouldn't do for his well being. I love being his mommy!

So this is what we are up against: Spina Bifida is an abnormality of the spine, determined in the first 20-28 days of pregnancy, before a mother experiences a missed period. While chances of Spina Bifida can be reduced by taking Folic Acid, our geneticist (and several doctors agree) that like 99% of the time, it is just an abnormality left to chance. I was taking 800 mcg of Folic Acid in my prenatal the whole time I was off birth control before we knew we were pregnant, so baby had enough of the good stuff, but for whatever reason the spine did not "zip" together completely, leaving some spinal tissue in a cystic bubble on the back.

Babies with Spina Bifida have extremely different experiences. Some children grow to be very successful both physically and cognitively, while others will need assistance their whole lives. Paralysis is determined by the location of the lesion on the spine, where as cognitive function is determined by damage to the brain caused by hydrocephalus (spinal fluid in the drain) and issues with the shunt (a device doctors surgically place in the brain to drain fluid from the brain into the stomach).

After doing some very detailed scans, we discovered that our babies lesion is on the lower sacrum. It appears to be somewhere between S3 and S5. This is the best possible outcome (with the least, if any, paralysis). While it is possible that our son could need the assistance of a wheelchair or walker, it is far more likely that he will walk unassisted or with the use of braces on his ankles. Our baby's brain shows structural differences to be expected with strain on the spinal cord, but currently there is little/no sign of cognitive damage. The last few days had prepared us for the worst, but we are starting to see that the worst isn't happening here. Our child seems just as determined as we are to have a happy and fulfilling life!

We are currently investigating two options for our little one. The first of these options is fetal surgery. There are two different fetal surgery options (open fetal surgery, where the uterus is cut down the midline and a pediatric surgeon repairs the spine and then stitches mom closed; and fetoscopic surgery, where the same repair is made but done through scopes.) that we are considering. I have qualified for fetal surgery at Texas Children's Hospital in Houston. If we choose to go through with this option and all my results allow it, this surgery will likely be done the second week of January (very soon!). I would be on bed rest and asked to remain in Houston for the duration of my pregnancy.

The second option is post-birth surgery, where the baby's spine is repaired within the first few hours of birth. The results for this surgery are a little less successful long term, but also less risky for mom and do not impact future pregnancies like cutting into the uterus would. With this option, I would likely be able to carry full term, live in Oklahoma City with Derek, and have time to meet with various pediatric surgeons before the surgery is done. Baby would likely be in the nicu for several weeks after surgery.

Because our child's lesion is so low and his prognosis is so good, it is possible that he will be be denied fetal surgery. We are so grateful that we even have these options, that we are praying that God's will is done here, and we will find joy and satisfaction in whatever option is offered to us.

Friends and family, we love you. We really appreciate the love and prayers that have already been offered on our behalf. I know that this is a calling that Derek, baby, and I have already accepted in our pre-earth life. We already determined that we have enough faith, love, and willingness to make this work...we are just rediscovering that now in mortality! Derek and I have also been realizing that we have had several experiences that have unmistakably prepared us for handling the emotional, financial, and educational aspects of our growing family. God knew that we would go through this experience far before we realized it here. I have never felt a love for anything like I feel for my little guy. Please continue to pray for us to have the strength to meet these challenges, and please pray for our baby that he will be healed; that his life will be put in the hands of capable doctors and that his body will be strong enough to withstand the trials he will soon experience. We are so excited to celebrate this precious little spirit!