Avalyn James Sax Part 1

Avalyn's birth story started a little earlier than we expected after a routine 35 week ultrasound.  We were just there to ensure that my placenta previa had cleared and she moved head down (instead of transverse - her favorite position).  She had actually moved head down and my placenta had moved, all those chiropractor trips had worked!  Unfortunately our OB came in to inform Braelyn and I - Danny had to leave for work - that the baby was measuring small and bloodflow in the cord seemed to be a little restricted.  She wanted us to head directly to see a perinatologist that day, I called Danny and we headed over there after dropping B off at Grammy's.

At the perinatologist the ultrasound tech told us that the baby was measuring small but that everything else looked perfect, no restricted bloodflow or any organ issues.  We thought we were in the clear, until two perinatologists walked in and told us otherwise.  They were worried about our baby's brain, our floor fell out and all we could do was stare at each other.  I had 3 more ultrasounds where they showed us what they called cerebellar hypoplasia and a fluid filled "cyst" at the central base of her brain.  They wouldn't give us a specific diagnosis because not all findings were consistent with one specific thing and they suggested we head to Children's Hospital for a full review.  Children's couldn't get us in for a full day of specialists until Thursday, a day and a half later.  Danny and I spent a lot of time talking, praying and hoping that they were wrong, that our baby was ok.  We also talked to amazing people that had walked the road of childhood disability and loss, we wanted to be as prepared as possible.

That Thursday we left the house at 5:30am because of the snow that had come through the night before, everything was peacefully blanketed and my little girl slowly kicked and rolled the whole drive.  Once we got there we were checked in and sent to radiology for a fetal MRI, even though we were early they got us right back.  The MRI went so much quicker that they expected and they had all the images they needed in 45 minutes.  After a quick breakfast in the cafeteria we decided to head up to see if we could check in for our fetal echo.  Surprisingly they got us in early too!  After the ultrasound a cardiac surgeon came in to speak with Danny and I and he told us her heart was perfect, explaining that as perfect as he thought it was, at this point in pregnancy ultrasound is hard to use because the bones are hardening and they can cast shadows.  He sent us, with a perfect report, off the Maternal Fetal ward of Children's where we were scheduled to have a full genetic screening with an amniocentesis.  At this point we were 4 hours early because all the others had gotten us in, the receptionist showed us a family waiting area, turned the couch into a bed, gave us warm blankets and showed us where would could get snacks/drinks.  We went back to that room and waited, we talked more, answered texts and prayed for our baby - who was still kicking and rolling.  We decided after a couple hours to run down and have lunch but as soon as we got back they told us they had a cancellation and could take us back right away.  They started on another ultrasound right away while the genetic counselor reviewed a full family health history.  Shortly after we heard the tech say something about a perfect cerebellum but then the genetic counselor started reviewing the process of the amnio with us.  Right after our MFM came in and asked us why we thought we were there, allowing us to explain what we had been through and what we thought was going on with our little girl.  He quickly said, "ok then I'm going to go ahead and spoil the news, your baby has a perfect brain".  Danny and I let out the biggest breath ever with so many tears, happy tears for our perfectly small baby!  He showed us how the perinatologists office got the picture they did of her cerebellum, a shadow from the hardening skull bones, he then showed us her perfect cerebellum.  He explained that her head was in the 5th percentile and the rest of her body was measuring just a bit bigger than that.  After reviewing our history and explaining that there are just "smaller people" he told us we didn't need to worry about that.  We were then taken to a conference room, where just minutes earlier we thought we would be meeting with a full panel of specialists and social workers to discuss our daughters "condition", but now we were just meeting with two MFM's reviewing the MRI.  We walked through every inch of her brain and then other organs, he told us how perfect everything looked and said he was so thrilled to be able to give us this kind of news, it isn't often in his field he gets to.

We left feeling elated, our baby was ok, there were no hard decisions to make, there were no brain surgeries to schedule.  Our perinatologist called in tears saying she had been holding her breath for two days thinking of us.  She was thrilled but still wanted baby out early because of her small size, explaining the formula/incidence of being born still.  After speaking to our OB and Children's they would closely monitor us with NST's and ultrasound to ensure she was growing safely until we reached 38 weeks.