PDA closed

I wanted to share that we are now home, very tired after our long day. Jason and I stayed in Chapel Hill last night and woke up at 5 am to be at the hospital as soon as we could. You can see how tired he is in the above photo. Clara was originally supposed to have surgery at 7:30, but it was postponed because she had a BPD spell. That is when her oxygen saturation plummeted down (desat). Her airways collapsed and she had to be given extra breaths and pressure to open those up. Unfortunately this happens regularly with Clara's lung disease. However lately they seem to happen more often and severe. Once this was over and she was stable she went to surgery around lunch time. 

We were relieved to hear that the surgery went very smoothly and the surgeon said she had one of the largest PDAs he had ever seen. He did say that her lungs were stiff from the lung disease. This was not surprising but was discouraging none the less. 

When we finally saw Clara she looked good besides being very swollen, as you can see from the photos, and with new IV lines in her head. Throughout the next couple of days, she will recover. It will be a rough ride and she will become very sick. Her ventilator settings are way up now, just support her respiration. She will receive blood tonight, TPN and Lipids (because she is not able to eat), pain medication, possibly blood pressure help, and countless amounts of tests. 

As we are super excited the PDA is closed, the next couple days will be very unstable, and difficult for us to watch.  I don't know how many of you have watched a loved one, let alone your child suffer in a hospital. The stress, fear and pain in your heart is unthinkable. You realize there is nothing you can do, but just sit and listen and cling to any hope you can find within. My thoughts are so unorganized that I can't even think about praying, except to constantly read scripture for comfort and strength. I read it over and over again just to feel God and FEEL something good.  This morning we were so thankful to have our minister come and pray with Jason, Clara and myself. We were waiting for surgery to come back and get her and I was coming unglued. I was holding Clara's head and feet to just keep her calm and keep her asleep. What a blessing when our nurse got a call that our minister wanted to see us. How special it was for us to pray over our child. And I thought not only how much we love her, but how much she belongs to our Lord and Savior and how he loves her so. 

Ultimately we will have to play another waiting game to see if this surgery helps in a BIG way to help her get off the vent. No one knows for sure. It could make a big, little difference or none. Everyone is pulling for her in the NICU, hoping it is a BIG one. Please remember her all week, and pray for big results.