Saturday, September 20, 2014

Inutero Surgery: They Have to Take Me

Showing Off my 20 Week Pregnant Belly
When I became pregnant with Weston I was candidly opposed to genetic testing. Why would I make myself worry through a pregnancy? I could see preparing for things that require surgery or immediate attention, but if there is nothing that can be done, than just wait a few more months to find out. Finally a nurse explained to me that people go through all these tests because they sometimes want to end their pregnancy. Ohhhhhh, that never crossed my mind. Ok now I REALLY don’t want genetic testing. EXCEPT, for Spina Bifida. Since my sister, Andrea, has Spina Bifida, I was aware of the inutero surgery they can do on babies and to me it was something worth considering if I was ever presented with that situation.

Well here I am! Situation presented! I did get a genetic blood test for Weston and Miles for Spina Bifida only. The tests were accurate both times. I am grateful I got them because I have had time to seek out the absolute best care for my Miles.

The first couple weeks after diagnosis I desperately scrambled to get the inutero surgery done. In this procedure, performed between 20-25 weeks of gestation, a large team of surgeons puts the mother and the baby under sedation (with separate methods) and opens the uterus. A neurosurgeon closes the opening the baby’s back and the baby is put back into mommy. The idea is that the spinal cord and nerves have less time in the womb to be exposed to amniotic fluid, which is damaging. Hopefully, things can grow better by being in a safer environment. That’s the short version at least.

When we got the diagnosis, I was told that Miles may be a good candidate for the surgery because it looked as though he had an S1 lesion. This indicated which vertebrae the spinal defect had occurred and where the opening is on the back. For Miles, it appeared on ultrasound that his was the very top vertebrae in his sacral spinal region. This is a very typical lesion location for Spina Bifida children and it is also the minimum level to qualify for the surgery. Right after the doctor told me about the surgery, she said that I would most likely not be considered because of my Type 1 Diabetes but she would look into it.

The next morning my mom and I were making calls. I told her I didn’t feel like making calls and she said, “You will be advocating for your child his entire life, you may as well start now.” So I picked up the phone. Phoenix Children’s Hospital was supposed to call me and guide me through this with resources but I never once heard from them. I was on my own. I learned that this specific surgery is done at two main hospitals, in San Francisco and Philadelphia. It is still in a clinical trial phase and the risks are enormous to mother and baby. The median birth age of these babies in 32 weeks (many born earlier) and that can cause a multitude of other health problems. Many moms are on bed rest from the time they get the surgery until when they deliver, all the while on several drugs with awful side effects to prevent the uterus from contracting and starting labor early.

Despite all the scary things I read, I wanted the surgery. I would do anything for my son. All of my reading made it very clear that insulin dependent diabetics cannot get the surgery. From reading what the recovery is like, I did understand the reasoning for this. Type 1 Diabetes in a complicated disease in itself and requires intense management. Blood sugars are affected by many different drugs. Healing can be affected. The fetus is affected. It would just be an added layer of risk that doctors aren’t yet willing to deal with.

But I’ll be damned if I didn’t try! So I had every contact I know in the medical field reaching out to these hospitals. My mom discovered that Houston Children’s Hospital had, only 3 weeks before, done the first orthoscopic version of this surgery. Meaning the mother did not need to be cut open, therefore decreasing many risk factors. Aha! This is my surgery!!! Bryce and I texted everyone and I asked them to pray for this conversation with Houston Children’s. My best friend Jessica said, “They just have to take you.” That’s the way I saw it too. The just had to. I would not take no for an answer. I would pay any amount of money. They couldn’t get rid of me easily.

From those phone conversations, I will say that I like Texans. They were the kindest and most compassionate nurses I have talked to yet, and they had cute accents. The head nurse of the neonatal unit spent a long time on the phone with me. She asked me lots of questions and I apparently gave the right answers because she said, “Your son may be a great candidate for this! Let’s get you out to Houston for a work up.” Oh joy! I am THIS close!

“Well, there is one more thing,” I paused. “But I’m afraid to tell you because I know what you will say…I am a Type 1 Diabetic.”

“Oh,” she said, sounding really sad. “You don’t qualify then. There is a hard line when it comes to Type 1 Diabetes because at any point this could become an open procedure where they do cut the uterus open and so we follow the same criteria as those hospitals. You did the right thing by calling us. You had the right idea.”

Heart crushed. I told her she was my last hope. She apologized and said she hopes Miles does very well.

This conversation with Texas happened within a couple days after Miles’s diagnosis. I did still make attempts for the next couple weeks through various avenues but to no avail. My mother left many messages with specific surgeons in Houston but came back with the same answers. People had medical contacts at Standford, University of Washington, this guy is the best, try this hospital. But it came down to a few main factors. Only a couple hospitals do this procedure and it takes teams of people and years of training so a different hospital can’t just try it out. And they aren’t going to take a Type 1 Diabetic. They just aren’t. We found out it is also done in Germany and Brazil and Bryce and I started researching flights to these places. We had to stop ourselves and take a step back. Maybe the “No” answer is actually the answer to our prayer.

From meeting other Spina Bifida moms, I got the names of the top 2 pediatric neurosurgeons for Spina Bifida in Phoenix. Dr. Shafron at Phoenix Children’s Hospital and Dr. Moss at Cardons Children’s Hospital. Bryce took a day off work and we interviewed both. Of course we made a day of it and treated ourselves to Texas Roadhouse afterward. Who wouldn’t?

Both doctors were not huge fans of the inutero surgery. They both admitted there may be some benefits, especially with children not need shunts after birth, but many have much more severe problems because of it, like Cerebral Palsy. It brought me some closure. There were no more avenues to take and no special contact that could magically get me in for this surgery. And the truth is, it may not be the right choice for our son. So we moved forward with preparing for surgeries after birth.

More to come on how we picked our neurosurgeon. 

Tuesday, September 16, 2014

A Letter From My Dad

My parents, Drew and Priscilla, visiting us in Chicago. 2011. 

My dad sent us this email as some encouragement. The way my parents have loved my sister and me has made me realize what parenting and delighting in our children truly means. We have never for a second questioned how much we will love Miles. 

They say you always marry your father, and in so many ways I did. Everything I love in Bryce and the way he puts Weston and me first is exactly the family man my dad is. My dad took me for long walks at night growing up and would teach me about the stars. He played "the age game" with me and told me stories of his childhood. He tucked me in every single night and fluffed my pillow like no one could. He cooked me breakfast every morning and made my school lunches. One time I told him that the other moms put notes in their kid's lunch boxes so he started writing notes on my napkins. When I was diagnosed with Diabetes, he was the one on the sidelines of my soccer games, waiting with a juice box in hand. He was, and is, an unparalleled dad.  

This letter says it all: 

September 8, 2014

"Good Morning Allison and Bryce,

I'm sorry for what you are going through.  We know what it is like.  However, I want to leave you with some perspective.  There has never been a moment in my life when I thought it would be better without Andrea.  Having her has never prevented me from doing anything that I wanted to do.  I don't feel short changed in anyway.  I love her as much as I could love anyone, and consider her a complete blessing.  You will feel the same way about Miles. 

There are lots of good people in the world, and you will have all the support that you need.

Love Dad"

Sunday, September 14, 2014

Sharp Left Turns

I have always told God that I trusted the plan He had for me. Yet when I made that promise, I envisioned Him sticking mainly to the plan I had for my own life. I could handle a twist here or a turn there, but I never thought he would give me a sharp left turn- far away from what I told Him I wanted. I realize that God’s plan is much better than my own and He has great plans for me, but really God? Was my own plan that bad? He answered, “Trust me Allison.”
I repeated the lyrics of one of my favorite songs over and over in my head.

“All my dreams, all my plans, Lord I leave them in your hands.” –Unspoken

The week after finding out about my son’s Spina Bifida was undoubtedly the hardest week I have experienced…so far. The morning after we found out I woke to the smell of breakfast cooking and music playing. Bryce was in the kitchen, singing and dancing. He had gotten up early and bought a bouquet of bright yellow sun flowers which were in a vase on the dining room table. You only need to be around Bryce once to know he is a great man. The most selfless, positive, hardworking and faithful person I have ever known. I am so lucky.

If only I could have matched his positivity. The truth is, I didn’t eat for 3 ½ days. Not the healthiest choice for a pregnant, nursing, Diabetic mom, but I could not eat. I only fed Weston Graham crackers.  Bryce desperately tried to get me to eat something, making my favorite foods but the cause was lost. I lost 5 pounds. I told him I needed to let myself feel the pain and then I promised I would move on. So he let me feel the pain. He let me sleep the day away, washed my tear soaked pillow case, and then he would wake me up and force me to go to Target with him to buy toilet paper. He let me be sad, but then made me chose happiness. It’s easier said than done when every cell in your body hurts and taking a breath uses all your energy. I wept on the couch for hours and hours and my baby boy would stand by me, patting my back, crying, “Momma, Momma.” I felt so much guilt that he knew what was happening. I forced as many smiles through the tears as I could.

Weston got some grapes out of the fridge to feed himself one day. 16 months old. 

It was as though I was walking through a fog. The sun in the sky looked grey and gloomy. Suddenly I was a foreigner in a world I didn't recognize. Everyone else was just living their lives and I was watching it. I managed to still go to family gatherings and play dates and explain matter-of-factly all the surgeries my son will be facing. I heard people tell me I should abort him and that he will burden my life (only one person.) Most people just gave me a sad look and said, “Remember, God won’t give you more than you can handle.” Really? Because it feels like he has given me a lot…pushed me to the brink actually. Those people don’t know the shattering heartbreak of something happening to their innocent child. I needed to be affirmed in what I was feeling. That it was crappy and intense and that the loss of the life you once pictured in something worth grieving. I needed to get to feel sad, just for one week.

An incredible thing also happened that week. People came out of the woodwork. Not necessarily the people we expected to come by our side, but there was not a moment we felt alone. Friends showed up with meals and tears in their eyes. They sat by me on the couch and listened to me for hours. They put Weston in his high chair and fed him a real meal and changed his diaper. They brought dance dvd’s for me to watch and Disney movies for Weston to pass the time. They surprised us at our doorstep at 10 pm and sat in our bedroom with us let us be sad, then made us laugh. They took me to brunch and asked me to explain Spina Bifida. They took my kid for the day so he had something positive to be around. They prayed with us. They called relentlessly, text every day and sent the most heartfelt emails and messages. Most importantly, they told me how excited they were to meet Miles.

It’s a humbling thing to need help so badly. My physical, emotional and spiritual needs were at their greatest that week. I clung to God and talked to Him all day. He was so present. But I simply could not have gotten through the week if it weren’t for those that didn’t pretend to have the perfect thing to say or do, they just made themselves present. Having a tangible friend by your side is a powerful healing source. It has taught me so much about how to react to others’ heartache. I have at times been afraid to step on toes or intrude on a hard time but the reality is, I was protecting myself from feeling uncomfortable. I’m sure I made people feel uncomfortable that week but no one ever made me feel that way. I understand that many just don’t know what to do, so they do nothing. Or they say, “Let me know how I can help.” I had no capacity to recognize my needs and delegate them to people. Could you please wipe my tears? You make sure my son is fed? You ask my husband how he is holding up? Could you text every day, even if I don’t respond? I am so grateful that God strategically placed the people in my life that I needed in that moment.

I rarely cried around other people. I’ve never been one to cry a lot in public. Not because I am ashamed of crying, in fact a good cry does wonders. It must be a coping mechanism because believe me, behind closed doors I wept until my tears dried up. One of my biggest fears had been that close family and friends won’t bother to learn all that is entailed in Miles’ disability and help me with him. I thought I would be stuck at home all day. At my women’s bible study I shared this fear and I cried. A close friend turned to me and looked me in the eye and said something that has meant more to me than she could ever know. “I can’t wait to meet Miles and watch your sons. I will learn to care for whatever his needs are and you and Bryce will still go on dates and take care of your marriage.” I needed to hear that so badly. She is the only person that said that to me and I knew she meant it because she has watched Weston so many times. It has made me much more courageous in moving forward.

Moms of Spina Bifida children reached out. They emailed, called me and met me at a moment’s notice to tell me that everything I’m feeling is ok and it won’t last forever. They gave me recommendations on surgeons and let me meet their children. Moms have so much guts. Being a mom is not for the weak of heart.

I have had a favorite song since college but it has a whole new meaning now. I have sang it countless times but I now know that I learned this song for this moment of life. For the hundreds of hours I have helped friends through breakups, job transitions and friend drama, I have often used the words from this song.

If You Want Me To by Ginny Owens

The pathway is broken and the signs are unclear
And I don't know the reason why You brought me here
But just because You love me the way that You do
I'm gonna walk through the valley if You want me to

'Cause I'm not who I was when I took my first step
And I'm clinging to the promise You're not through with me yet
So if all of these trials bring me closer to You
Then I will go through the fire if You want me to

It may not be the way I would have chosen
When You lead me through a world that's not my home
But You never said it would be easy
You only said I'd never go alone

So when the whole world turns against me and I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the darkness if You want me to

When I cross over Jordan, I'm gonna sing, gonna shout
I'm gonna look into Your eyes and see, You never let me down
So take me on the pathway that will lead me home to You
And I will walk through the valley if You want me to
Yes, I will walk through the valley if You want me to

Saturday, September 6, 2014

The Day We Got The News

I got a call on my way to the first Scottsdale Bible MOPS meeting on Sep. 4. I was scheduled to be a greeter in the parking lot and had my cute new t-shirt on. The call was from my midwife office saying that the results of my genetic testing were in and I needed to come in right away for the results. I asked if they could be given to me over the phone and she replied, “No.” My next words were something I thought I was saying in my head but they came out loud, “So the results are bad.” She was silent.

I dropped Weston at the nursery and tried to pull back tears as I greeted all the new moms that morning. I told two friends about my call and made it through that meeting. When it was time for sharing at our tables, we were supposed to talk about something we needed courage for. I couldn't bring myself to bring it up yet because I didn't want to believe it could be true. I knew my chances were a little higher for a Spina Bifida child, but the genetic test checks for several disorders and I had no idea what it could be. Keeping calm was the only thing I could do. I also kept reminding myself that these tests are usually false positives and everything is fine.

Bryce took the afternoon off work and we went to the doctor’s office together. I heard one midwife say to another in the hallway, “I’d like to come watch you give this news.” Both women came in and said, “I’m sure you already know that your screening came back positive for Spina Bifida.” I didn't know this for sure yet, but now I did. She explained that these are almost always false positives but the level 2 ultrasound would show more. I asked if there is a specific number correlated to these results and she said no there isn't; it simply says “positive.” I requested a copy of these results.

As we lay in bed that night, I began looking through the results and there were numbers linked to the data. I don’t think the midwives work with these scenarios often. It only took a quick google search to see that my AFP levels, which is the SB indicator, was extremely high. Far too high to be a false positive. My heart sank but Bryce told me to stop researching.

The next morning I held my phone in my hand and called the Perinatal office the second it was 8 am. We were scheduled to have a week long trip to Chicago to see friends (without Weston) only a few days later, and I knew I could not go on this trip without knowing for sure. I begged them to squeeze me in that day, and after over a dozen calls back and forth, we were scheduled for a level 2 ultrasound at 1:30 pm. Again, Bryce took time off work and met me at the office. I had nerves about what was to come, but I still felt so positive. I had just canceled our upcoming gender reveal party because I knew we would find out the baby’s gender in that moment. Even if the news was good about the SB, I wasn't up for hosting a party.

The ultrasound tech looked at the baby’s spine right away and said, “Rest easy dad. You look so nervous. The spine looks perfect. You can take a breath now.” I have never felt such relief and gratitude to God in my life. We spent the next hour getting to watch our baby wave at us, dance around and learn we were having another boy. We had already decided we would name him Miles Gabriel. As she scanned over each body part, I said to her, “That’s the most perfect spine I've ever seen. That’s the most perfect brain I've ever seen.” We laughed and joked and I’m so happy I had the special hour with my son. I would never trade that hour. I got to meet him, knowing he is perfect and getting acquainted with him just as he is- my son, not a disabled person.

The tech left us alone in the room for about 15 minutes as we sent texts to family, overjoyed to be having a second boy! It was a really happy moment. I was getting hungry and wanted to get out of there to get lunch. Then the doctor came back in the room and asked me to get back on the table. I thought nothing of it. She probably just needed to double check everything. She looked for about 5 minutes, asking me many questions about my sister’s Spina Bifida. Where is her lesion? How disabled is she? Shortly after those question she said it, “There is a Spina Bifida.” I just stared at her. I must have heard wrong. She saw my face and repeated, “Yes there is.”

It felt like a wave of heat started in my head and washed down my body. My throat closed up. I can still feel the physical reaction. Bryce grabbed my hand. Thank goodness for shock because over the next ten minutes she showed us the opening on the baby’s back and the malformation in his brain. She said the ultrasound tech had missed it but she was able to see it in his brain and some indenting on his forehead.  I was able to calmly ask questions. One of my first, does he have SB Occulta, the mild version? No, he doesn't.  I already know so much about SB that I didn't have to ask many questions. Bryce was silent. She sat me up on the table and talked about the many options we have moving forward. She said we can discuss those options. I think I just stared blankly at her. Finally she said it.

“Do you want to continue with the pregnancy?” You know when this is offered you are dealing with something serious.

“Yes,” I said very sure. I didn't even need to turn and look at Bryce. I knew his answer. She said that is great news and now we know which direction to go from here. Next we met with a genetic counselor with a thick French accent and I could barely understand her. She asked a million questions about our family and medical history. She said this happened because of a combination of environmental and genetic factors, and before I would have known I was pregnant. I asked if my Diabetes played a role and she said, no. My blood sugar control is so good that my chances would be no different than anyone else. After this, she explained Miles also has cysts on his brain that could be benign or could be a sign of a serious chromosomal defect called Trisomy 18 and he probably wouldn't live long if he has this. The doctor had not mentioned this. I could get this test, that test, more tests. I don’t remember what all of them were. The doctor came back in the room and said I may qualify for the inutero surgery that is done before the baby is born. We said we were interested in this. She then said it is unlikely they would accept me because of my Diabetes.

Oh, there it is. Diabetes coming to harass me again. I've never hated Diabetes so much. I never wanted it to affect my children.

We needed to meet with a pediatric neurosurgeon, urologist, orthopedist, physical therapist, occupational therapist, blah, bah, blah. The baby won’t have bowel or bladder control his whole life. He may not walk. His spinal cord is tethered in the womb. He had enlarged ventricles in his brain indicating hydrocephalus. I already knew what these things meant but hearing it explained for your baby makes the words sound different. I grew up witnessing what this life is like through my sister, but I was never her caregiver. It all sounded scarier now.

Finally, the counselor and doctor could see we needed to digest this. She said we had just been given a lot of really hard information and we need to go home and process it. I would be hearing from Phoenix Children’s Hospital to set up some consultations. I used to care about what all of this would cost, but everything seemed trivial now.

Bryce and I had driven separate cars and agreed to meet at his mom’s house to pick up Weston. We didn't say much in the parking lot, just hugged. I called my mom and told her. It was her worst fear come true. I was still calm. No crying. She stayed calm too and took a deep breath and said, “Ok. Well we will deal with this. I’m so happy you believe in life. He will be a great kid.” We were both in shock at that point. Bryce and I explained what we could to his mom. She teared up. We told her we would be canceling our Chicago trip.

On the way home I was in a daze. I stopped to get gas and accidentally locked Weston, my phone and my keys in the car…in the Arizona heat. A truck driver let me use his phone and the police and fire department came and broke into my car. As the police officer questioned me, I thought for a moment they might take Weston away from me. It was not a good day.

We walked into our quiet house and it looked grim and sad. Bryce and I sat on the couch, crying and holding each other. We held Weston. We just cried. It was the darkest moment of my life. We went for a nightly walk like we normally do and said all our fears. I’ll never forget what Bryce said. “All I ever wanted was a normal life.” We both knew nothing would be ordinary anymore. People like to remind us that normal is relative and boring but in a moment like that, normal sounds really really nice. Would we travel? Would anyone watch our kids when there are extra needs involved? What will happen to our marriage? To Weston’s life? Will we go bankrupt with medical bills? We already can’t afford my Diabetes costs. Will Bryce’s career goals be halted? Will we have more children?

I didn't sleep that night. Not one moment. Anyone who knows me knows that I like to sleep and I can do it pretty much anytime. I finally got up and researched Spina Bifida. I wanted to find a magic blog or article that told me everything would be ok. I didn't find that. I wanted to pinch myself and wake up from the nightmare. I was awake. I wanted to turn back time to 4 months before and change whatever I had done the day my son’s neural tube formed. Did I take a hot bath? Was it the week I had the stomach flu? Did I forget a prenatal vitamin? Did I eat too much dessert? I’m supposed to create a safe environment for my baby to form and I failed. I knew that these things aren't truly my fault but depression does an interesting thing to your mind. It makes it wander into unsafe places that only God can pull you out of. My thoughts were admittedly dark that night.