Sleepless Night - Pierre Robin

Our next visit was from the neonatologist. She came in to explain that upon evaluation it was determined that Teryn has Pierre Robin Sequence.

http://www.cleftline.org/publications/pierre_robin

WHAT? Just like most people, we had never heard of this before. I only heard snippits of what the doctor was saying....cleft palate...small jaw...trouble breathing...being intubated. But the next thing I heard was far too clear, "We are limited on what our hospital can do for her. She is going to be life-flighted to Shands in the morning so she can be evaluated by specialists." They were going to come and get me a couple of hours before her departure so I could spend time with her, until then try and get some sleep. Only half an hour later the doctor was back in our room telling us they were having trouble keeping Teryn's breathing stable so Shands was on their way now and would be there within the hour. We got permission for me to be taken down in a wheelchair so I could see her.
When I saw my little girl she was lying under a heat lamp wearing nothing but a diaper and had a breathing tube. Where were the cute outfits I had spent hours picking out? This was nowhere near the way I had expected our first night together to be. James and I sat on either side of her bed holding her hands. We didn't really say anything, just sat and waited. Our little angel Michelle was busy on the computer getting as much information as possible for us about Pierre Robin and printing out the pictures she had taken of Teryn for us. We are so greatful for the compassion she showed us that night. Those pictures would be the way we introduced our daughter to our family and friends for the first time.

The nurses told us the transport team was arriving so we needed to return to our room. As they were leaving they wheeled Teryn in to say goodnight. She was in a clear plastic box that looked like a flight control panel itself. We told her goodnight and that we would see her soon,
The next couple of days we had a huge outpouring of love from family and friends, each one having done their own research on PRS before they arrived. At one point we had twenty people in that tiny hospital room. The nurses were nice enough to just let it happen as everyone had a slice of Teryn's birthday cake. We showed off the pictures of our little girl to everyone who walked in the door. The commotion kept my mind off of the physical and emotional pain at least for a little while. Until the room was empty, then I would let myself feel the true emotions and keep asking God why and was he really there.
Teryn had arrived at Shands and we were calling a few times a day to see how she was doing. I had to stay in the hospital a day longer due to a complication. As soon as I was discharged we went home and began packing to go and see our little girl.

***I recently added the pictures to this post. I kept them hidden inside my phone for so long. Initially it hurt too much to see them. I am past that and know that we have one amazingly strong little girl.