Fetal Surgery Week

There were a lot of conversations the night before surgery. I was admitted the day before since the team was anxious about my Diabetes management and wanted to go over everything in detail. I met with several anesthesiologists. Some made me feel comfortable, some made me feel more anxious.

“What if my body is paralyzed but my mind stays awake and I can feel and hear everything throughout the surgery?” I asked the question mostly joking but I had some irrational fears. Expecting to be laughed at, the resident anesthesiologist responded.

“Yes that does occasionally happen where people report that they remember their entire surgery. Anyway, let’s talk about tomorrow.”

“No, I’d like to revisit what you just mentioned…”

I don’t think you can ever feel fully prepared going in to a surgery like this. One where you have been repeatedly told that the recovery is extraordinarily painful and your child may not survive, or you may not survive. One where you are only their 40^th case in the last 6 years because it’s such a rare procedure. Where you are the first insulin dependent diabetic in the world to be getting the surgery so they are going to do things differently than usual. No matter how brave I felt, I didn’t sleep the night before surgery.  

My surgery was delayed a couple hours in the morning because of another neurosurgery. Bryce and my mom were with me and the room seemed quiet and tense. Bryce came over to me and I started crying. I felt like no one was encouraging me or really acknowledging me. He got the picture and painted my nails bright pink. There was a lot of laughter seeing him attempt a manicure. During my manicure, a huge group of people came in to prep me. Bryce and mom had to leave the room so my epidural could be placed. The goal is to insert the epidural catheter before surgery. Toward the end of the surgery, they inject the medicine so when you wake up you feel no pain for the next 48 hours. The doctors kept reminding me that if I feel anything at all when I wake up then there is a problem.

As the doctor was stringing the catheter into my spine, I passed out. I’ve never done that before. Thank goodness a nurse was in front of me to catch me and lay me on the bed. I kept apologizing as I woke up and they assured me it’s pretty common because people have a drop in blood pressure during procedures. It was more of an exciting start than I had hoped for. Everyone was brought back into the room and it seemed like there were 100 people in there. I was given something to relax me and my memories got foggy as I was wheeled down to the OR. I do suddenly have vivid memories of being in the OR as they asked me to move over to an operating table. I lost count of how many people were in the room at that point but I already knew that over 25 people would be there for my surgery. The doctor put a gas mask on me and said I would be asleep soon. I felt very alert. I was looking around the room at taking everything in. It seemed like a minute passed and I grabbed the doctor’s arm. She removed my mask. “Why am I still awake?” I asked. “You will be asleep soon,” she assured me. That’s the last thing I remember.

During fetal surgery, I am placed in a very very deep level of general anesthesia. Not only do they need to put the baby to sleep but my uterus needs to be completely relaxed. My surgery was about 2.5 hours and went well. Caleb’s portion of the surgery was about 25 minutes while most of the time is spent cutting me open, removing my uterus and positioning it, cutting it open to expose Caleb (first he needed to be flipped from his back to his tummy), and eventually piecing my body back together. Caleb was measuring 1 pound 11 ounces the day of the surgery. The team updated Bryce through the ordeal and also text him pictures of the surgery throughout. My blood sugar stayed perfect the entire time.

I woke up in the recovery room in excruciating pain. I don’t remember saying much other than, “Pain, pain.” I remember people running around and the anesthesiologist team coming in to redo my epidural. I have no concept of how long that took but once it was working, I was a happy woman. We weren’t sure why my epidural didn’t work initially. I was told maybe the catheter migrated. I was given high doses of magnesium sulfate to prevent labor. All fetal surgery moms talk about this drug. It makes you feel incredibly hot, nauseous and terrible. It is very similar to having the flu. We kept the room at 55 degrees and it was intolerable to everyone but me.

Here is where the story gets interesting.

Around 1 am, I woke up in a panic. I could feel my epidural rapidly wearing off and all my feeling came back instantly. I began sobbing and Bryce woke up. I can only describe the next 3 hours as a scene out of The Exorcist. Since it was the middle of the night, the fetal team was gone and they suddenly had a fetal surgery patient with no painkillers on board and no working epidural and no orders written. Bryce, my mom and my nurse spent the next few hours trying to get the on call anesthesiologist to redo my epidural but he didn’t seem to believe it wasn’t working. The nurse kept pushing Morphine in my IV which did almost nothing. I could not wish pain like that on anyone. Every single minute felt like an hour. Bryce called a fetal surgeon on his cell phone in the middle of the night which the surgeon did not like, but he asked to speak with me. The second he heard my sobbing, he was giving the anesthesiologist a piece of his mind. I remember begging and pleading, sometimes to Jesus, sometimes to the doctor. I asked them to put me under. After two attempts at redoing the epidural, I was numb again. It was the longest 3 hours of our lives. There is nothing I couldn’t endure after that. Bryce was scheduled to fly home the next morning to be with our boys.

“Please don’t leave me,” I begged him. “I already moved my flight to Friday.”

We all fell asleep and exactly 2 hours later, I woke up to my feeling coming back again. No, this can’t be happening. I called for the nurse and more anesthesiologists came in, continually bolusing my epidural. “You should be paralyzed,” they would say. “Do you need proof?” I would cry hysterically. I’ll stand up and run around this room if you need proof!”

This time, they knew something wasn’t working right and they put me on a drip of Dilauded. I had never heard of this drug before but now I kindly refer to it as “my day on heroine.” It is essentially medical grade heroine and only used in extreme situations for pain. It wasn’t ideal for Caleb, but we had no choice and of course I would accept any relief. I barely remember the next 24 hours and I was hallucinating and could not hold a conversation.

My remaining couple days in the hospital consisted of more pain as I came off the drip, starvation, vomiting, enemas, and attempting to get up for the first time on day 4. My blood pressure ran dangerously low the whole week, around 55/30. It’s from the combination of drugs being given. Trying standing up after 4 days with blood pressure that low is…eventful. I was also not allowed to eat food or drink water for 4 days since the Dialuded was making me sick. If you wanted to see a hangry person, you should have visited room 544. The second they said I could eat, I went straight to a BLT. Also not a smart idea. Broth would have been a better choice.

My amniotic fluid levels were at a 3 (normal is above 10), but this is expected after surgery. I could feel every movement that Caleb made, tenfold. I also could tell he was in pain. He thrashed around like I had never felt before. It was heartbreaking because there was nothing I could do. Doctors seemed happy with our recovery and discharged me on day 5. They don’t want you sitting in the hospital waiting for a blood clot but it did seem early to go home. As I was being wheeled away from my room I pointed out if I were to ever be in this much pain for any other reason, I would be heading TO the hospital not AWAY!

Last pregnancy pic pre surgery

Right before surgery

Waiting to get checked in

Dr. Papanna

Diabetes Talk

Dr. Moise and Dr. Snowise

Final walk through the halls

Netflix and Chill

Next to Miles, I'm the hardest IV stick

Card reading and nail painting

Dr. Fletcher, Neurosurgeon

Dr. Tsao, our favorite

Being sent into the Operating Room

Waiting for a new epidural after surgery

We couldn't get me sats above 80- oxygen time

Painkillers make you smile

We stood up, then immediately back down

First shower, heaven

He hadn't slept in a week

Christina had the same surgery the week before

Jess flew in just to be there

Dear Caleb- Fetal Surgery Day

Mommy and Caleb

My dear sweet son Caleb,

I am focusing right now on our team. Me and you, you and me. You have helped me along the way in making the hardest choice of my life; to risk so much for something so uncertain. You never made me make the decision alone. You remind me daily of your strength as you kick and punch me stronger than your brothers ever did. I also know you are a jokester. Once the monitors are on you, you persistently dance away from them so nurses have to chase you around. All along the way, you have reminded me that you are going to be ok and have even comforted me through my fears by giving me a tickle when I'm feeling vulnerable.

You are such a good son Caleb. I desperately want the best life for you, yet you are so much more than how well your spinal cord functions. You are a son of God and a gift to me and daddy. There is nothing sad about your diagnosis because I already know that the blood that runs through those tiny veins holds an interesting, strong and brave little man. A third brother to make us a laugh at the dinner table. A son that will wrap his arms around my neck and tell me he loves me. A future husband to a wonderful woman who will know she has met someone very special.

There is absolutely nothing in this world I wouldn't do for you and if I never get to meet you on this side of life, I still feel you completed me as a mother. You stretched me harder than I thought I could go, crashing me into life scenarios that pushed me right into God's arms where I belong. I'm so lucky you found me fit enough to be your mommy. I will never take this opportunity for granted. I've spent my life saying I would take any amount of physical pain to relieve the emotional pain for my children. I hope that's what I'm doing for you today.

Don't worry my love. You may feel a little scared or hurt or not completely understand why this is all happening today but I'm right here with you. I hope to take the worst of it away so you can get back to healing and growing and cracking me up like you so often do. I will keep you safe, no matter what it takes. You never need to thank me for this. Just please love your future kids the same way. Don't let fear dictate your choices for them, but the peace and presence of our Heavenly Father.

It's going to be ok son, I promise. Weston, Miles, daddy and me are all waiting for you. Just do your best and you will have made me the proudest momma in the whole world. When we have bad days during this, we are in it together and you will always see a twinkle in my eye as you look at me through life because I'll never forget this special bond we created. We are so lucky Caleb. No, I'm lucky because I have you. We are after the same rainbows end my baby.

Love, Mommy

Fetal Surgery- It’s Only A Day Away

Dinner with Mom at Cyclone Ayana

It’s my last day of true freedom. It’s all hitting me. I started dry heaving as I walked around Houston with my mom today. It’s funny what nerves will do to you.

Here’s the plan friends. I spent three days last week in the hospital at Memorial Hermann Children’s for my steroid shots. No one was with me so I was bored and basically just ate too much gross hospital food and had heart to hearts with the nurses and doctors. The highlight was I got to meet the mom who had fetal surgery for Spina Bifida on her daughter last Tuesday. We had been speaking online and her room was right down the hall from me. I went to see her every day and she tried to smile and grit through some serious pain for my sake. I’m seeing so much bravery in the women that go through this. It was fascinating to see someone experiencing this just one week ahead of me. Please pray for Christina and her daughter, Haven. She has been a big support to me.

My mom flew into Houston yesterday night so we got to have a girl’s day. We grabbed some Tex Mex for dinner and have relaxed in the comfort of our hotel room. I called one of the surgeons on his cell phone today with a few more questions because as we draw near to the surgery, more fears are arising. There are a few things they are doing differently with me because of my Diabetes and it always makes me nervous to have to go outside the box. For instance, they want to do quick blood draws on me to test my blood sugar during surgery so they are doing an Arterial IV line. They said these are painful and if someone accidentally puts IV drugs into an A Line, there is tissue damage and can even lead to amputation. Please don’t make that mistake medical staff! I’m putting so much trust into strangers.

Bryce flies into town tomorrow morning and I am getting admitted to the hospital around 11 am tomorrow. There are still more meetings and conferences to have with the doctors. The team has still not agreed on whether to cut my incision horizontally or vertically. There is some big debate on this. They are also deciding if they want to learn how to use my insulin pump during surgery or to move me to an IV drip of dextrose and insulin. Everyone is very nervous about my Diabetes control during the surgery and days to follow, including me.

Tuesday morning, I will be prepped and heading for surgery by 7 am. My mom or Bryce will keep you all updated on the status. The surgery is generally 3 hours but Caleb’s defect is more involved so they said it could be longer. I’m really hoping to wake up to good news. All I want to hear is, “Everything went to plan.” Words like that have become music to my ears the last couple years. The following few days after surgery will be very difficult.

I talk to moms all the time that have experienced this surgery and there is one common theme they discuss: pain. There is no denying this is one of the most painful things to go through. Unless someone has done a lot of research on fetal surgery, they have no idea the magnitude of it. Most doctors don’t fully understand. What makes it unique, is they do such an invasive procedure, cut your uterus in a very unsafe spot, and once sewn back up, your baby is in a rapid stage of growth. Most women deliver between 30-34 weeks because something emergent happens in their pregnancy. The luckiest ones make it to 37 weeks. My C-Section is scheduled for December 18.

I told the doctors that people keep comparing this to the pain of their C-Section or hysterectomy. They all look at each other and laugh and say they would compare this to going through open heart surgery, though probably more painful. Not to mention the intent of the surgery. My baby is having neurosurgery and he has to heal in my womb. They told me a C-Section will be the easiest thing I go through after fetal surgery. Ok I get it guys…this will hurt!

There are 25-30 doctors in the room to perform the surgery so in that sense I feel incredibly taken care of. With that many smart people in a room to keep Caleb and me alive, I know they will do a great job. Once surgery is over, there is a long road ahead. The goal from then on out is to stay pregnant as long as possible. Mothers say each day they get closer to their due date they feel so relieved. Most start celebrating when they make it 30 weeks! I will spend about a week in the hospital and then I’m moving into an apartment next to the medical center. I’m hoping after a few weeks there I can return to Phoenix, but it all depends on my recovery. My mom and mother in law will trade off caring for me. Bryce is going home the day after surgery to be with our boys and return to work. I wish he could stay with me longer.

Fetal surgery is so rare that it’s hard for most people to relate to. I’m so grateful to the moms I have met that have had it and the candid advice they have given me. It makes me feel less alone is this crazy experience. The love and support we received during my pregnancy with Miles ran wide. But I would say the support for Caleb has run deep. Friends, family and total strangers have invested their whole hearts into this experience. There must have been dozens of people involved in arranging care for my boys while I’m gone. This has undoubtedly been a community effort. Oh Caleb, how you have been loved before anyone could ever meet you!

If you are interested in learning about fetal surgery, there is a PBS documentary on Netflix called, “Twice Born- Stories From The Special Delivery Unit.” It has several parts and follows a few stories, so to save time I would recommend following the mother, Shelley. Her daughter is having fetal surgery for Spina Bifida.

Be Careful What You Wish For – We Are Approved For Fetal Surgery!

Houston Food!

The Lindens, New Family to Us

First off, I have to say that we loved our week in Houston. We were required to spend a week at Children’s Memorial Hermann Hospital completing tests and dozens of consultations to decide if we qualify for fetal surgery. Houston was wonderful to us. My friend’s mother took us into her home and treated us like family. All of the hospital staff were instantly our best friends and I have never had such a positive medical experience. We knew right away that we would be in good hands in Houston. And the food y’all! Texans don’t mess around when it comes to flavors and quantities. We did some great eating.

After some ultrasounds and an MRI on our first day, we learned that Caleb’s Spina Bifida defect and Chiari brain malformation were worse than we had been told. Ordinarily this would be bad news, but Bryce and I were happy because we knew he would qualify for surgery. Our biggest fear is that we would not qualify.

The Director of the Fetal Center spent three hours with us the first day. His job this first week is to make sure he explains the risks, aka scare the living crap out of us. The surgery is incredibly complex. There are 25-30 doctors in the room. Just doctors! Not including other medical staff. It would give you chills to know what goes into this. Roll call, timed procedures, teams on standby ready for the worst. There are many people involved in trying to keep Caleb and me safe. I will be this center’s 38^th mother to receive this surgery, and I will be the first Diabetic in history to have fetal surgery. They are truly taking a risk themselves by accepting us and we are deeply grateful.

To give you a brief overview of the surgery, this is how it goes. I will be admitted to the hospital a week before surgery to begin steroid shots to develop Caleb’s lungs. This timing is not standard, but since steroids are not good for diabetics they want to closely monitor me and make sure my sugars stabilize before surgery. For the surgery, I will be given an epidural and sedated in a much deeper sleep than for normal surgery because they need my uterus completely relaxed and the sedation needs to cross over to Caleb. A very large incision will be made on my abdomen. This is usually done hip to hip but they are considering a vertical cut on me to prevent cutting through muscle and causing infection. My uterus will be removed and examined to pick a spot to cut open that will be ideal for Caleb’s positioning. A team will be monitoring Caleb by ultrasound throughout the surgery. Once open, they sedate Caleb further, and add fluids into the uterus to keep him warm and then the neurosurgery team performs their surgery on him. This is very time sensitive and they want him exposed as little as possible. If anything goes wrong, Caleb will be delivered and a neonatal team will be waiting to keep him alive. After surgery, my recovery will be incredibly difficult and painful.

They told us all about the horrible things that can happen to me. This included a more recent case where the mother developed a blood clot in her leg. They caught it early but she may never have use of that leg. The doctors started to think Bryce and I were far too excited and positive about this surgery. They finally asked:

“Are you prepared to possibly lose Caleb during this surgery?”

We knew it could happen. I told him, “We already have a son that we are afraid of losing every day. Now we have to face it again with another son. We think about death all the time and it makes us more willing to take risks. I’m not ready to lose Caleb but I’ll never give up on giving him a good life. Even if my body has to be cut in two, I’m ready.”

He said that it is clear that I’m a mother willing to do anything for my child and I am a bit blinded by that. He said Bryce’s main concern is my life and that is also the doctors’ main concern. If something dangerous happens during the surgery and they have to choose between my life and Caleb’s, they will chose mine. They have been faced with this choice in prior surgeries. We accept this decision and hope it doesn’t come to that. We were also asked that if they need to deliver Caleb, would we want him to be saved. He would be so premature he could face significant challenges to stay alive. We said yes, save him no matter what. I WILL be meeting my son.

We know I will be in Houston a minimum of a month and I will only be in the hospital a week. After discharged, I’m required to live right next to the hospital so I’ll be in a hotel. I will also be in a wheelchair or bedrest the remainder of my pregnancy. My hope is to return to Phoenix to deliver him, but my C section may be more complicated and we need to find a team out here that is comfortable with this. The goal is to make it to 37 weeks but few moms make it that long. We are also considering that I return to Houston for delivery. Caleb will be required to spend a minimum of a month in the NICU, if not longer. We want a NICU team that will be familiar with this unique situation.

We are now in a whirlwind of planning and preparing. The absolute hardest part of all of this is that I’m leaving my boys for so long. Bryce will be their mommy and daddy. But we have been given new hope! That is worth more than anything we could ask for. Getting this far in the process has been nothing short of a miracle.

Even though it’s all terrifying, we wished for this. So be careful what you wish for. It may just happen. I had always wanted a natural birth. I wanted candles, dim lights, no IV’s and no meds. I’ve always been a huge advocate of natural birth. I couldn’t be bringing my son into the world in a more opposite way and I just have to laugh about it. No matter how a child comes into the world, they just have to be born. Caleb will come into the world having already gone through neurosurgery. That’s pretty amazing to think about. I can’t wait for him to hear what mommy and daddy decided to do for him.

We Are Heading to Houston!

After hearing that Children’s Memorial Hermann Hospital would consider me, I began speaking with other moms that had gone through fetal surgery and hearing their stories. This surgery is truly brutal and the recovery is one of the toughest I’ve ever heard of. Deep down, I knew I would not be capable of moving forward. There were too many logistics to sort out; too many details on how to care for the kids, and I just knew it wouldn’t be possible. I’ve had many surgeries in my life including heart surgery only a few months after Bryce and I married but this one was truly getting to me.

In true Bryce form, my husband trusted God completely. He said that if it is meant to be that things will begin falling into place. “Is that how you think it works?” I asked him. “Things only fall into place if I make 8,000 phone calls and fight people like I’m in court all day long.” The truth is, we were both right. We needed a lot of God, and a bit of mamma bear going to battle for her baby.

The next day I got a message from my insurance case manager. He had done some of his own research to find out that Hermann Children’s Hospital is in our insurance network. EXCUSE ME? Our own Children’s Hospitals are not in our insurance network and only a couple states even take our insurance. Yet this state, this hospital…things began falling into place. Fear began melting away and I got some mojo back. It was time to fight for my baby. The phone calls began.

We are officially scheduled for a week long consultation from September 5-9 in Houston. We could have only gotten this far with the help of dozens and dozens of friends and family members deeply wanting to see this surgery succeed. At the end of that week, the surgical team will decide if we are officially accepted for surgery. Bryce and I will return home for a week and then I would return to Houston without him indefinitely.  I would be the first Diabetic to ever receive this surgery. Making history and eating Tex Mex Baby. Sounds like a dream!

I have spent the last week working like I’m back in the corporate world. So many more things need to work out for this to succeed the way it would need to. I did find out that although the hospital is in our insurance network, none of the doctors or surgeons are covered (thanks Cigna). There are 5 doctors involved in performing the surgery since there are 2 patients- Caleb and me. I have appealed to The State for more nursing hours to help care for Miles until I deliver Caleb. I have reapplied to our grant company to keep our nanny longer as she is the only person in our lives that is capable of watching Weston or Miles, plus we trust her completely. I have asked our insurance to consider covering some of the surgical costs. I have reached out to charities to help us pay for my relocation costs. My mom and mother in law will have to travel and tag team caring for me until my delivery. I had an amniocenteses- you know, that giant needle they stick in your uterus to test amniotic fluid. Caleb and I will need to pass every lab and MRI to even be considered. Our nurses will have to sacrifice their time and health to work overtime hours for us.

But we have faith. We have a good, good Father that is bigger than any single one of these things. He can easily make them all happen. He only wants good for our family.

If I have the surgery, I will be in Houston a minimum of a month. If I return home, I will be on strict bed rest the rest of my pregnancy and can only get up for doctors appointments with a wheelchair and caregiver. The goal is for a C Section at 37 weeks but few moms make it that long. We will need full time caregivers for me, Miles and Weston. The entire burden of life and the household will be put on my sweet husband. It is also a very real possibility that I will not get to leave Houston and I will be delivering Caleb by myself out there and staying with him until he is safe to fly home. We are also preparing that I can be gone for 6 months.

Time away from my kids. So much time. This will be the absolute hardest part. I’m missing Weston’s 1^st week of preschool while at the consultation and it’s ripping my heart out. The preschool has made an exception for Weston to be dropped an hour early because even they understand the magnitude of our family being apart. Everything will be turned upside down.

But we fight for our kids. We sacrifice our bodies, our happiness, and everything that makes sense to keep them safe. We make really hard choices with only them in mind. I am bummed to be out of commission for the good weather, the holidays, pumpkin spiced lattes and fall. Those are my favorite things. But I am getting a chance to serve my son with my mind, body and spirit. What a privilege to be given this opportunity.

Weston just said to me, “Grandma lives far far away. You will not go far away right mommy?”

Well son. I may be going far far away. And you won’t understand why I can’t hug you. But it’s because I don’t just love you now, I love you forever and I want to make the best life for all of my sons forever. One day you will understand.

The Plot Thickens- Caleb and Fetal Surgery

The twins at Church this morning.

As some of you may remember, I spoke a little about fetal surgery when I was pregnant with Miles. In this surgery, the defect on the baby’s back is operated on in the mother’s womb in hopes for a better outcome to their health in the long run. My doctors and I made calls to all the big hospitals in the country that offer this surgery and the answer was always “no” because of my Diabetes. Type 1 Diabetics are excluded from getting this surgery. We even considered flying to Brazil to get the surgery before we eventually accepted that it wasn’t in the stars for us.

Now in our second round of being pregnant with a Spina Bifida baby, we again inquired about fetal surgery. Again we were met with the same answers for the same reason and we didn’t push it too hard. To be honest, we were aware of how risky the surgery is and we didn’t think it would be plausible to uproot our lives with the care that Miles requires. Our plan was to deliver Caleb at the same hospital, using the same doctors as Miles. We didn’t need to research and we still know everyone there. Heck, we were just discharged a year ago.

But then…

I got a text from my sister in law with a photo of a business card for a neurosurgeon at Children’s Memorial Hermann Hospital in Houston. Through a crazy connection, the mother of the little boy she nannies has a working relationship with this doctor. She mentioned my case to him and he told her to have me contact him directly. I sat down immediately and wrote a lengthy email trying to concisely describe both my sons’ cases. Right away, I was on the phone with the Fetal Department Director. He spent an hour on the phone with me and in the end I couldn’t believe what I was hearing. Yes, I’m a candidate. I would be the first Type 1 Diabetic to ever receive this surgery, but they are willing. They will evaluate me.

Whoa. This just got real.

I was flooded with excitement as I researched and watched videos and began obsessively talking to moms that had gone through the surgery. Along with that excitement entered sheer terror. You see, when this surgery was a hypothetical it was extremely appealing. Now we needed to hash out the dirty details; the pros and cons. Suddenly, there were a lot of cons.

In the fetal surgery, I would relocate to Houston for an indefinite amount of time. There is a large team of surgeons that would perform an incredibly complicated and risky surgery on Caleb and me. I would spend at least the next week in the hospital on an epidural and a drug called Magnesium Sulfate. The horror stories of this drug are fairly scary, but it is to prevent your body from immediately delivering the baby. When I recover, I will be moved to hotel for a couple weeks and will need a 1 on 1 caregiver. I will also be managing a lot of pain. If all goes well, I will be able to return home. If not, I will be delivering Caleb in Houston by myself.

If I make it home, I will be on strict bed rest. As in, I can’t do ANYTHING bed rest. As in, I will need my own private caregiver bed rest. I will be at huge risk of life threatening complications- uterine rupture, placenta abruption, yadda yadda yadda. And then there is my Diabetes. These babies are all born early via C-Section. They shoot for a 34 week delivery, but most of the moms I have spoken with have delivered between 28 and 33 weeks. Then you have a tiny preemie facing a whole slew of complications. And a mother that has put her body through a lot. Some moms say it took them 2 years to physically recover.

So why would we consider something like this? Sounds like a huge drag right?

Because we would do anything for our baby and this could improve his life. Miles’s outcome has been rare. We have been told he is the .001% of Spina Bifida kids that has the worst complications. Caleb looks so similar to him on ultrasound, we want to try and give him the best future possible. Not only for him, but we also believe it will improve the quality of life for all of our children. Not in the short run. We will sacrifice a lot for this. But in the long run, we can focus on each of their individual needs best if we don’t have two kids on ventilators.

But we are really, really scared. There are so many things that would have to fall into place for this to work. First, Caleb and I would need to be accepted for the surgery when we go to the consultation in Houston. I will need to find someone to be out there with me to be my caregiver as Bryce will need to stay home to work and be with the kids. The state would need to beef up our nursing hours for Miles and we would need to find nurses to train and fill those hours. We would need the grant company to renew our grant so we can keep our nanny. Our nanny would have to sacrifice another job she has to stay with us longer. And the biggest battle, our insurance has said they will not cover this. Even ACCHS covers this surgery, but our insurance won’t. There are so many details it makes my head spin. We have to figure all of this out in the next couple weeks.

If God says yes, then we say yes.

In church this morning, a verse in a worship song really stood out to me.

“God, When you move, you move all our fears.”

This situation seems almost impossible to me. And the thought of being drawn and quartered…well it’s unappealing. But where God leads me, he erases the fear, doubt and shame of my emotion. He will only lead to the good, glorious and beautiful. Let’s hope that’s all in the big ‘ol state of Texas ya’ll!

If you would like to see how the surgery works, here is a series of short videos explaining Spina Bifida and the procedure. If you get queasy, don’t worry. This is more of an advertising video and doesn’t explain gruesome details.

http://childrens.memorialhermann.org/spina-bifida/

Would I Choose This Life?

Miles pondering the meaning of life, 18 months.

When Bryce and I were engaged, he lived in Chicago and I lived in Arizona. It was long distance for 5 months as I planned the wedding and we relied on phone calls to keep in touch. He had just started his first big boy job as an auditor for PwC and the hours were absolutely brutal. He would usually call me as he was getting off work at 1 am. When he first got there, he worked in the North Suburbs and didn’t have a car. After work one night he missed all the buses and trains home. He couldn’t find a cab and was walking in deep snow in his dress shoes with no coat on in the middle of nowhere. He was overwhelmed.

On my 28^th birthday that fall, Bryce didn’t call me. I know, I know. He was in his new job and wasn’t able to, but you can’t expect girl on her birth to be rational. I was so mad. In the many years since, he has learned my very appropriate expectations for my birthday. Gowns, private jet, Filet Mignon, dripping in diamonds…am I right girls?! Anyway, his best friend, Erik, text me happy birthday and asked how we were doing. Bryce and Erik are very close and for some reason I just spilled my guts to him that things were really hard and frustrating and I was wondering if we should even get married. (I’m telling you, my birthday is REALLY important to me!) I’ll never forget what he said.

“Now is the time to see what you guys are truly made of.”

That was all he needed to say. This is when we get to see the nitty gritty of our relationship. Were we made of the good stuff or bad stuff? The forever stuff or the give up stuff? It was up to us. I know we were made for the deep down, good and bad, never ever getting rid of each other stuff.

I love putting my husband in the hot seat and asking him philosophical questions. He always humors me and honestly answers, hoping that we can quickly move on to watching reruns of The Office.

“If you could know that our 4^th child would also be disabled, would you stop having children?” I realize this is a loaded question to ask as Pam and Jim are reminiscing of their love for mixed berry yogurt.

“Not necessarily.” He seemed confident in his answer.

“If you could know our 4^th child would be healthy, would you have another one for sure?”

“Not necessarily. One at a time Allison.” Hmmmm, that answer was the same and I needed to pry more.

“If someone could tell you that two of your children would be disabled, and you would go through everything we have gone through, would you still make all the same choices?”

“Yes I definitely would.” Say whaaaaat? I mean, that’s what I wanted him to say but he was taking it a step further. He said he wouldn’t ponder it and be afraid. He would CHOOSE this life, exactly as it is. And if someone could have given him a crystal ball at 22 and told him how it would play out, he would gladly move forward into it. Did I feel the same way? I had to chew on that for a bit.

Let’s say an angel could give me a message about what the future would hold before I had children. She is telling me to move forward without fear and not change my course because this is God’s plan for me. Well, honestly I may need a little convincing because it sounds frickin scary Angel! This is how imagine it going:

ME: “Will I be able to keep my mojo? The fun side of me that is carefree? I don’t want to lose myself.”

Angel: “You are going to change a lot. Don’t limit yourself to who you thought you would be. Let yourself become the woman God intended. It’s much better than the woman you once were. And yes, you will still have mojo. Like, tons of it.”

 

Me: “What if others judge us? I don’t want a whole future full of that. I’m more sensitive than people think.”
Angel: “They will. They will also have someone to answer to for that. But honestly, that was going to happen either way. That’s people and that’s life. Don’t place your self-worth in others dumb dumb.”

 

Did Angel just call me a dumb dumb?

 

Me: “I’m worried about my oldest son. What if I can’t be the kind of mother he needs because I’m so focused on the other children?”
Angel: “Oh come on! You know that kid is a child prodigy in every way. Besides, you grew up in his shoes and you are an absolute hoot to be around.”
Me: “Wow Angel. Now I’m blushing.”

 

Me: “Well what about my husband? What if he isn’t satisfied with this life and secretly feels held back or disappointed in choosing me?”
Angel: “Who Bryce?! Ummm, he will adore his life with you and you know that’s a guy after God’s own heart. I’m not even going to tell him you said that insane statement because he would laugh and say worrying is a sin so you better buck up you just get over this nonsense!”

 

Wow. This Angel really has some sass. I like her.

 

Me: “Why do my children have to experience more suffering than others? And what if I lose them too soon? I won’t be able to handle it. Actually this all sounds like a lot Angel. Are you sure this is the plan?”
Angel: “Listen to me. Hard things bring you closer to God. Do not envy those that breeze through life Allison. They won’t get to experience some of the beautiful things you will. And you will never handle this alone. That’s why I’m here.”
Me: “Couldn’t it all be that way without this disability stuff? The pain, the heartache?”
Angel: “No it can’t. Stop overthinking it girlfriend! Your kids are the cutest ones God has made yet! You won’t be worrying about this stuff every day. Now do you want me to tell you who the next Bachelor is?”
Me: “No! Don’t spoil the entire future for me! I like surprises too. Sheesh.”

 

Well that solves it. I would choose this life too. Over and over. Because that’s what has been asked of me and also because it’s so beautifully worth it.

 

Paying Hope Forward- A Letter To Our Doc

We had a very interesting visit with our Perinatologist last week. We really like her and she is the same doctor that gave us Miles’s Spina Bifida diagnosis. This conversation was obviously different and we mostly talked about how shocking it is that it’s all happening a second time. She said our chances were less than 5% that it would happen again. She said she spoke with some Geneticists she knows and they were all very surprised about our family with 3 cases so close in a family. She recommended we look into some studies and contribute our genes into research.

“How can I have a healthy child? I’ve always wanted to have a girl.” I asked her.

“Keep having children! This won’t happen every time.” We liked her answer. “I can’t wait for you to come back to me next time when you are pregnant with your daughter.”

She commented that she had never seen a family so positive and light hearted.

After that meeting, one of her comments kept coming back to me. She said usually gets the hardest and most complicated cases. I imagine she sees a lot. We felt inclined to send her the following letter.  

"Dr. Kuhlman,

Bryce and I wanted to thank you for the way you handled our diagnoses of Miles and Caleb. I know you must give hard news often and it is very emotionally taxing for you. We felt like you are truly walking through it with us, without making it seem too good or too bad. We also appreciate that you told us to have more children. We have always wanted a lot of kids and this has made it discouraging. Many medical professionals think we are crazy for wanting more children, and maybe we are, but we love our kids all the same.

I also felt inclined to mention something that crossed our hearts after our last visit. You had said that you often get the toughest scenarios; the hardest ones to diagnose. I imagine you see parents in their darkest points, making the hardest decision of their lives. We know that feeling very well, times two. One thing we gained after learning of Miles’s disability while pregnant, was that those horrible feelings of despair, hopelessness and depression all go away. Feelings are fleeting and constantly changing and it’s difficult to make a life altering choice in the midst of sadness.

If there are parents faced with similar news as we have gotten, we would love to offer to speak with them if they would like. We do not want to influence their decisions or pass judgement, but simply be a listening ear that knows exactly how it all feels, and also share our story. We have gained a lifetime of wisdom in the last few years and the most important thing we have learned is this: Just because life doesn’t turn out the way you expected, doesn’t mean it’s not a good life. And just because the whole world may not see your child’s life as worthy of living, doesn’t mean it’s not a great life to live. We have been privileged to learn lessons that most never get to learn and we have so much more joy because of Miles’s life, as we will Caleb. We are the lucky ones.

Again, we don’t want to represent your opinions but it helped me a lot to talk with other mothers that had heard the exact news that I had. Also, my husband seems shy in our visits, but he is wise beyond his years. I know that fathers have a whole different set of worries to consider and he would be a great guy for another dad to talk to. He has still exceled in his career, still goes golfing and still loves life. It won’t be as scary as one might think.

If people aren’t interested in speaking to us, they can also watch this video we had done when Miles was placed on hospice. It speaks into how each of us were effected.

https://vimeo.com/164765749

Here is another happy video of Miles.

https://vimeo.com/163583375

Sincerely, Allison Lefebvre"

Deja Vu- Another Son, Another Diagnosis

Caleb at 14 week ultrasound

We recently found out we are having our third son, Caleb Drew. His namesake is in honor of my father, Drew Hastay. We planned for this baby, we prayed for him and we prepared for a year and a half. I did genetic testing, IV vitamin therapy, saw naturopaths, spent thousands in the best supplements, ate organic, skipped necessary x-rays, didn’t use lotion or shampoo with parabens, you get the idea. Every month we were ready to try for him, I put it off just one more month because I wanted to make sure I was doing everything perfectly. Finally, April 26, 2016, we found out we were pregnant.

Everyone said the same thing. “I know in my heart this baby is healthy.” And the truth is, I did too. I was not worried about another Spina Bifida diagnosis because it is so incredibly rare to have one child with it, let alone two. Plus we had other things to worry about. Our insurance dropped all of Miles’s access to medical care, providers and hospitals, therefore I was fighting hard to keep him safe. I was also stricken with awful morning sickness and fatigue, being hospitalized twice in my first trimester. I kept telling myself that once I knew Caleb was healthy then everything would be smooth sailing.

At 15 weeks I got the Quad blood test that looks for something called AFP. It’s a protein that spills into the blood stream that indicates a neural tube defect. This test came back positive with Miles at a level 4 (normal is below 2) and was our first indication of Miles’s birth defect. For Caleb, I sat on the couch clenching my phone, waiting for the nurse to call me back with results. Since I had not heard from her first, that must be good news.

I finally got her call. Bryce was working on the plumbing under the sink and I sat close to him. The nurse’s voice began to shake. I knew. She talked about my elevated AFP and that my baby may have a neural tube defect; that I should see a high risk doctor. “I’m so so sorry,” she kept repeating.

“What is the exact AFP number?” I kept asking. I could tell she was avoiding the answer. After repeating myself she answered timidly, “8.5.”

“Ohhhhhhhh My Gosh, that’s too high,” were the only words I could slowly muster. Bryce sat by the sink with his head down. He knew what we were talking about. I got off the phone, we hugged and I cried.

My perinatologist immediately called me. She is the same doctor that gave me Miles’s diagnosis. She was beside herself. She said our only hope is that the lab got the results wrong. Banking on a lab error doesn’t leave your hopes high.

We had to wait 4 days before getting an ultrasound, though we already knew what was happening. I researched how an AFP result can be that high and other than a neural tube defect, the only other cause would be if I had liver cancer. That’s what I was hoping for.

“Maybe I have liver cancer and the baby is ok,” I hoped out loud to my husband. That’s the first time he looked really sad. I continued, “I’ve always wanted to go to heaven.” He finally looked up and smiled at me with a look in his eye that wouldn’t even consider the thoughts I was having. He said,

“Save me a seat.”

We eventually got the ultrasound but the night before I begged God for a miracle. I knew He could take all of this away. I knew he could make this all a lab error and show me a perfectly healthy son that I could hug and squeeze and nurse and could play with Weston. I told him I won’t be mad at Him if He says no, but I know He can do this and I would never be so grateful for anything in my life. I would be a better follower of Him, a better wife, a better mom, if He could just spare my son of this. I don’t usually make deals with God, but it seemed like a pivotal moment to try.

God said no.

The ultrasound showed almost exactly the things we had seen in Miles. A severe Arnold Chiari II brain malformation, an elongated cerebellum, a lemon shaped head, an indented and open spinal defect and spaced out vertebrae. The flat open defect is very rare and part of why we believe Miles is such a severe case of SB. Caleb was exactly the same. They looked at him under ultrasound for 2 hours. Is his defect in the lumbar region of his spine? Maybe thoracic? Wow, the situation kept getting worse. They said they would fight hard for me to get inutero surgery this time. There are great risks to mother and baby during this surgery.

We were prepared for the news but it still took our breath away and sent hot needles down my body. I couldn’t help but ask the doctor if she had ever known a mother with two SB children before. No she hadn’t. The usual thoughts quickly ran through my head. What did I do wrong? What is wrong with my body? I will never be able to have more children. Did I do something to disappoint God? How will I ever watch another child go through what Miles has? How will we afford this? Are we equipped to care for two disabled kids?

I didn’t realize a broken hearted person can still have their heart broken again.

When we got to the car I cried hard for the first time. “I’m not doing a good job at making kids. I’m not a good mom.” Bryce stopped me, “That’s not true. Our children are the cutest people in the world. We are luckier than most people. I’m excited to have Caleb!”

I cried, “We will never be able to go on a family vacation. You never got to have your baseball team.”

He smiled, “We will have a wheelchair softball team!” I finally laughed.

We spent the rest of the day letting it soak in. The pain is real and the grief is thick. All of the emotions and fears are the same as when we found out about Miles, yet not as intense. I cry periodically, but not as often. My appetite is suppressed, but not gone. My heart falls out of my chest, but then returns to its home. I hope for miracles, but I’m not begging for them. We have gotten used to bad news.

And the concerns are different this time. Somehow it makes last time look simple. Miles is unstable and on hospice. He needs 24/7 critical, acute, 1 on 1 medical care. The state does not provide us 24/7 care. Who will care for Miles while Caleb is in the hospital? How does Bryce hold down a job in this circumstance? His beard has already gone grey in less than a year. What will we do about our bad insurance? Weston is older now and needs us. Who will care for him while we are gone? How will we fit the boys and equipment in our car? How will we fit in our home? I am already not in great health. Am I capable of taking care of these kids? Those questions are real and something only The Lord can provide answers for. My mind starts to explode when I think of them all at once.

For some reason, God has asked a lot of us. I often wonder why he chose us. Why he thought we were adept in living this life. I also know there is a lot more to life than my comfort and when God calls you to something, you answer. You do it with thanksgiving and praise. I’m lucky God entrusted me with His most precious spirits. I hope I can make Him proud.