Tuesday, September 27, 2016

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

Sunday, September 25, 2016

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.

Saturday, September 10, 2016

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 38th 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.