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.