Tuesday, October 10, 2017

Baby B's First Marathon

Singing' "Don't worry 'bout a thing,
'Cause every little thing gonna be alright."
Bob Marley - Three Little Birds

Hello friends and family.  Brian and I decided to create this blog as a way to centralize information about Baby Beres.  We anticipate that the next few weeks (and potentially months) of our lives are going to be very hectic and emotional; it may be difficult to text/email everyone.  We appreciate your understanding as we do our best to navigate this joyful yet challenging time and focus on our little family.  This truly feels like our first marathon as a family...
Nine days ago, when I was 36 weeks and 3 days into my pregnancy, we learned some pretty shocking news.  Up until that point, we had received our care with the midwifery group at UIC and we couldn't have been happier.  My pregnancy had been smooth sailing with all signs pointing to a very healthy, normal baby on the way.  However, my midwife was interested in me having one more ultrasound, just to ensure growth was on track.  While I thought she was being a little overly cautious, I didn't fight it because I trusted (and still trust) her immensely. 

Seeing that it was a simple ultrasound, I told Brian to stay home because he had to work that night.  I made the short drive less than a mile from our house to the hospital for what I expected to be a quick visit.  After about 10 minutes, the tech seemed particularly interested in getting a really good look at one part of the baby, but knowing how difficult it can be to get ideal pictures of a little human curled up in my belly, I didn't think anything of it... until the PA came into the room.  

I can't remember her name and after she started talking, it was as if Charlie Brown's mother was there - "wah waah wah wah". But phrases like "didn't develop", "hernia", "NICU" and "high risk" stuck with me.  In an attempt to not panic, I asked her to write it all down and to give me time to call my husband.  While the ultrasound showed that the baby's growth was just fine and all vitals appeared healthy, it also uncovered that our little person has what is known as a CDH - congenital diaphragmatic hernia.  This is a rare birth defect that impacts 1 out of every 2,500 live births (about 1,600 babies per year) and they don't know why it happens.  Ultimately, the baby's diaphragm (which is the thin piece of muscle that separates your abdominal organs from your chest cavity) didn't finish developing, leaving a hole.  This is bad for a variety of reasons, but mainly if abdominal organs infiltrate the chest cavity, it can impede on lung development.  The severity of this condition can range drastically from very minute to very invasive.  90% of the hernias occur on the left side of the baby, but our baby's is on the right.  Leave it to our kid to be extra special.

My mind was racing - what questions do you ask when you don't even know what you are talking about?  Was the baby going to need to have surgery?  Yes - likely right after birth.  Was I going to be able to see my midwife anymore?  No.  Could I still have a natural birth?  Maybe, but only if it happened before week 39.  It all felt like a bad dream.  This wasn't supposed to happen.  Brian was able to make to the hospital in time to be told that we would meet with a perinatologist (an OB that deals with high risk pregnancy) in a week and we were sent home.   

This is when the hysteria set it.  It felt like the world was falling out from underneath us and we were completely out of control.  Beyond the fact that we had spent months preparing for an intervention-free labor and delivery, our focus shifted to what was going to happen after the baby was born - the logistics of the delivery just faded.  I cried myself to sleep that night while my amazing husband held me, told me it was all going to be ok, forsaking his deserved gut-wrenching breakdown to be strong for me.  It was honestly the most selfless thing anyone has ever done for me. 

We spent the next couple of days trying to process the information and reinforce that we would just need to wait to get more information when we met with the new doctor the following week.  But something just didn't feel right.  It was as if we were sitting in the last row of a school bus - we had no idea who was driving or where we were going.  That's when we started talking to some really important and knowledgeable people in our lives .  After a conversation with a friend from college who is an OB and Brian's brother, Kevin, who is a physician, our focus switched from assuming our current hospital was sufficient to ensuring we found the best facility with the best surgeon we could get in front of to give our child the best shot at a normal, healthy life.  

We considered 1) Cincinnati Children's Hospital because they have a team that specializes in CDH 2) Lurie Children's Hospital in Chicago so we could have our home base and support system and 3) Children's Hospital of Wisconsin to be close to family.  We spent hours discussing the pros and cons of each scenario and facility.  When I woke up on Friday morning, something in my gut was pulling me to Lurie here in Chicago.

Brian made a call the the Maternal Fetal Medicine group at Northwestern and it was as if the stars aligned.  He connected with an amazing woman named Linda who immediately responded to our predicament and initiated efforts to help us - we moved from the back of the bus to the front of the bus.  Linda connected us with Mary at Lurie Children's and the wheels were in motion to get us the best possible team of medical professionals they could offer to care for me and our baby. 

So here we are.  Thursday, Friday and Monday I will have a series of tests, we will meet with the pediatric surgical team and maternal fetal medicine to 1) get a better understanding of how severe the hernia is and 2) what to potentially expect during and after birth.  We are doing our best to remain hopeful and not get ahead of ourselves before we have all the information, but that is easier said than done.  We feel so lucky that 1) our midwife ordered the ultrasound in the first place which 2) allowed us to make adjustments to our care team and 3) prepare ourselves for the unknown. We ask for your thoughts and prayers as we approach these critical meetings and we will try to keep this blog up to date with new developments as we get them.  

"Faith is the bird that feels the light and sings when the dawn is still dark"
Rabindranath Tagore