When you have a planned c-section, you sort of end up planning everything. You plan who will watch the other children, what your hospital stay will look like, and what life will be like at home. You pack your hospital bag accordingly, and if you were like me and on bed rest prior to giving birth, you look forward to getting back to being mom again.
But that’s not how things went for us this time.
Let me introduce Baby Mercy!
This is Mercy. She was 11 pounds, 7 ounces at birth and 22 inches long. But, she did not enter this world screaming and crying. She entered the world purple and quiet.
But, she’s a fighter.
She was a wiggle worm all throughout my pregnancy, and that fight came out as she worked hard to breathe in those first few minutes…the minutes that seemed like hours to a mama lying on the sidelines, shaking from the medication, praying over and over that her little girl would cry.
But she didn’t.
And as they whisked her away and my husband went with her, I have never felt so alone.
Eventually, they wheeled me back to recovery, and I sat there and waited, wondering what was going on, and when Ty would come back…and what he would say when he did come back.
Much of those first couple of hours are a blur. I don’t remember much of what was said to me until someone said I could see her and they wheeled my bed into the the NICU so I could look at her. She was intubated and calm and doing well they all said.
Mercy was born with a cleft palate and a recessed chin, called micrognathia.
Many people have looked at this photo of Baby Mercy and thought her chin didn’t look all that recessed, but as the surgeon later explained to us (more on that in a moment), the inside of her mouth is tiny, so tiny that her tongue couldn’t help but fall back into her airway, blocking it completely.
The above photo was taken during the few hours they had her extubated over night the first night. It only lasted a few hours before she became distressed and it took everyone in the NICU to get the tube back in.
And that was when things began to move very quickly.
The NICU doctor came up to talk to Ty and I about what had happened, and his grave concern that our feisty little girl would pull the tube out herself and the doctors and nurses would not be able to get it back in this time. He felt she needed surgery and she needed it now. He offered us two options of hospitals – one in the current state we live in, and one near friends and family in a neighboring state. We chose the one near friends and family – which also happens to be ranked among the top pediatric hospitals in the nation. It just made sense. And so, Ty quickly packed and boarded a plane with Baby Mercy…
And I stayed behind to recover from the c-section.
When Ty and Mercy got to the hospital, the CranioFacial team was waiting for them. They gathered around her, assessed her condition, and got her comfortable in the NICU.
When Mercy was 5 days old, the team decided she needed surgery. They also finally gave us a name for her condition – Pierre Robin Sequence. Her case had no genetic issues attached to it and she has no other extenuating circumstances, like heart issues, in conjunction with the diagnosis. It is basically a series of events that happened early on in pregnancy that did not allow her palate and chin to form normally. The best choice for her case was to do a jaw distraction (mandibular distraction). This surgery involves hardware put into the jaw with rods sticking out from behind her ears that are turned twice a day with a screwdriver-type instrument in order to lengthen her jaw and allow for the tongue to come forward and no longer fall back into her airway.
Today, the team hopes enough progress has been made to allow for the tube to come out. Please, be praying all goes smoothly and Mercy’s jaw truly is far enough forward to allow for her airway to stay open.
I have never heard my baby girl cry, and I have never held her – two things I am desperate for. It makes me cry just thinking about the moment those two things happen.