Baby Sloane - Our Story

Many of you know that the last several years have not been particularly easy for us. Eric and I went through several years waiting to get pregnant, as I sustained several long-term health problems after Aiden's birth.

After spending most of the summer in Mount Shasta, CA helping out my dad's Lymphoma treatments, Eric and I were reunited in July and we found out shortly thereafter -the end of August- that I was pregnant. We were behind overjoyed and Aiden was SO excited to be a BIG brother! 

What we didn’t know: This pregnancy was complicated from the get-go. During the months of my pregnancy we battled not only emotional battles (as we stood by my Dad’s side through his battle with Lymphoma, and was at his side as he passed away quietly in January) but also, this pregnancy was  physically very difficult for me. I had high blood pressure, protein in my urine, and conflicting  lab results for my doctors. 

We knew something may have been really off when, at my 30-week appointment, I had a blood pressure of 155/100 and my measurements had jumped from “on time” to 5 weeks ahead. I was banned from flying, resulting in my inability to attend my dad’s funeral and I was sent to a perinatologist so that we could definitively treat whatever condition I may have had. 

We had several ultrasounds and it was revealed that I was suffering from Polyhydroamnios. This means I had way too much amniotic fluid. Sometimes this is a condition where there is an unexplained amount of fluid, sometimes it’s due to gestational diabetes, and in a very small percentile it’s due to something being wrong with the baby. The perinatologist sent us to a specialist at Children’s Hospital to perform a fetal cardiogram, fetal MRI, and additional ultrasounds. 

Eric and I both had sinking hearts walking into our “Family Meeting” after doing these tests because instead of a singular doctor in the room, we were met with 9 specialists, most of which were heads of their department. We looked around as they introduced themselves and with each title exchange Eric and I became more worried.

In the meeting of titles, we learned that our 34-week baby, had several birth defects. One of these, and the most concerning for delivery is that she suffers from micrognathia.  This condition results in the jaw being undersized to the point that her airway was small enough to not be able to process amniotic fluid like she was supposed to.  This also meant that during/after birth she wouldn’t be able to breath. We also discovered that she has very narrow nostril pathways and will also be unable to breathe through her nose. Her ears have not formed properly to put icing on the cake.  After learning of all of these items the team shared that there was real risk that Sloane would not survive her birth despite having mostly properly formed body.  I sat, petrified, as each specialist presented us with this information and then hopeful as it sounded like the doctors had a plan to get her to join our family safely!

The doctors planned a procedure called an, ‘EXIT procedure’. I had never heard of this before the morning of March 31st, 2018. What their plan was:

Get me to Children’s Hospital. 

Put me under General Anesthesia

Cut a wider than standard Cesarean section incision 

Partially deliver the baby’s head and one hand

While still attached to me (so she could receive air and nutrients from me): Secure her airway 

Once airway was secured, stabilize the baby and complete her delivery

Stabilize me

You could have knocked me over with a feather. Eric almost passed out at that point and then I just started crying because I’m a mess. And then I said OKAY LETS DO THIS: because I am a mother and mother’s do freaking hard things for their babies. 

The outlined plan above was for a Wednesday 3/21, early morning procedure. Our baby would be 36 weeks by that point. We went home. Armed with literature, fear, and a litany or things to do should certain things happen at home.    
                                                                                       

Tuesday 3/20 at 2:20 am my water broke in bed, so we called ahead and headed to Children's.                                                                                                                                                                       
 I remember getting an epidural and the next thing I knew I was waking up in my room four hours later with Eric by my side. My first worry was our sweet baby. Eric assured me she was okay. I was in and out for the next while, but we had doctors in and out from the surgery all day who explained this:

Our baby, Sloane Dianna Ball- was a warrior (good thing because we gave her the strongest names we could conjure up! She’s going to be a bad-A. Just sayin). 

After making the surgical cuts on me for the EXIT, they kept me connected to Sloane and proceeded for over an hour to get an airway. Luckily she was connected to my oxygen supply the entire time because  she was very hard to get intubated. After four different ways failed, Sloane had to receive a Tracheotomy. I was closed and she was brought over to the NICU where she was stabilized as much as possible. Because of the difficulty she had with her breathing tubes and trachea, she received some stitches and we can touch her but we cannot hold her at this time. 

Things we know: 

Our Sloane has no opening on the left side of her nose and a greatly restricted opening on the right side, so she cannot breathe through her nose.

She has a very small jaw resulting in her inability to breathe through her mouth.

Her ears are low set, and not formed on the exterior properly. She may have incomplete ear canals and it believed that she will need hearing assistance.   

We are working very closely with the Ear Nose and Throat doctors here. We know that many surgeries are in her future and she will most likely have a trach for several months, and up to a year. We know that we will have to have operations to open her nose, and an operation for her jaw to be moved forward: a mandible distraction surgery. Cosmetically, we will be able to move her ears much later down the road (about age 5-7 sees the highest success rate for what Sloane has). 

I will be in the hospital through Sunday recovering from the EXIT, and Sloane will be here much longer, most likely. We are both stable and doing well though at this time and I will continue with updates as we know more!