So this is just to get us up to date on the last 5 days of Emma's life. Born on October 22, 2009 she was immediately intubated and assisted with her breathing. Lungs are way too immature to do that for her yet!!! They warned us of the "honeymoon" phase were all looks wonderful for the first 24-48 hours but I didn't really listen. Her first day of life- Friday, was good. With the breathing tube still in place but basically on room air, no bleeding issues, no heart murmurs heard.
Day 2- Again things were going well for her. They had tried in the early morning to see how she would tolerate a CPAP trial on the vent- a very positive sign. But she never fully recovered from this. They seemed to be chasing her oxygen all day. An echo cardiogram showed a PDA- very common for kiddos Emma's size and age. As long as it wasn't causing any breathing problems we were good. I was discharged from the hospital that evening. She received her first blood transfusion because they draw so much for lab work every few hours.
As I pulled into the driveway of my house, I received a call that Emma's PDA was severe and causing problems for her breathing, she would need surgery to repair it... tonight...now if I could please come back to sign consent forms . In a fog, Rob and I headed to the hospital I had just left 30 minutes ago. Paperwork signed, CVOR team at the bedside with the surgeon, anesthesiologist, techs and nurses Emma had a PDA ligation done. We were told it was a success... "great" results. The follow up CXR showed the clip was in good place but her entire left lung had collapsed. Apparently they had caused some lung tissue trauma upon moving her lung out of the way to get to her heart. Basically her lung was now leaking air into her pleural space in her ribcage area. She needed a chest tube in order to re-inflate her lung and relieve the building pressure. This was done emergent at the bedside. Once done, she seemed to be doing better. Oxygen was better and able to be weaned down slowly... it was all better.
Day 3- In the am of day 3 I received a phone call from one of Emma's docs that they had to place her on a different ventilator. The standard one was too harsh for her injured lung and so they placed her on a specialized machine. It basically "pants" for her 600 times a minute. So no deep breaths but a ton of little panting breaths, similar to how a dog pants when they are trying to cool off. This is to decrease any additional damage and let that left lung rest and recover. They had to start her on dopamine to keep her blood pressure up- but only because they were giving her versed and fentanyl to keep her sedated. It was hard for Rob and I because a rest day really means a no progress day and we had gotten used to hearing positive reports every time... not just "oh she's the same". But no news is good news!!!
Day 4- In the AM she looked good. Received a call in the evening that her chest tube had apparently clogged up and was no longer working, causing the pressure to again collapse her left lung. They placed a second chest tube and then removed the first one. Another rough night and now back to square one for the rest and relaxation mode we have been in.
And so that's up to date to today, which will be a separate post!!! Please to all who may read this or may stumble upon our little story, PLEASE continue to pray for our little baby girl!!! She has such a long road ahead of her, so many obstacles to overcome and we are only just beginning...