A First In The PICU

Well, these pictures were quite a big effort (these are only four of 128!!). I had been talking with my nurse Peggy for a while about how I would like to get some 'professional' pictures of Gracie as soon as I could. However, I knew we would basically be limited to her one free hand and both her feet. I really wanted to try and get a picture of her face without all the stuff on it, but I knew that would be close to impossible. So the nurses started to collaborate and think of creative ways we could get a picture of her face. I called my friend Shana (who takes pictures semi professionally in addition to her full time job of taking care of 4 kids!!) to come down last minute to the hospital. She very kindly dropped everything and came down to the hospital by 7:00p.m. When Shana got here, they had a respiratory therapist come down and take all the tape off of her face. Then, they slowly moved her ventilator tube to the far side of her mouth. My nurse stood there like a statue the whole time holding her ventilator and tried not to move. We strategically put the blankets over all of her tubes and Shana clicked away. They had to get a signed doctors approval to do it! My nurse Peggy has had me show several other nurses today the photos. She wants me to show them because they have never had a baby this 'sick' have pictures taken like this. They really bent over backwards for us and were so nice about our photo shoot! I have to give a BIG thanks to Shana for providing us precious photos for years to come!!

This morning, the ears, nose and throat doctors came down and cleaned out Gracie's upper right lung and left lung. It took maybe 15-20 minutes. They had done a chest x-ray that showed a lot of secretions that were packed into her lungs and had made her upper right lung collapse. (That sounds kind of bad but apparently it seems to be not that big of a deal) I guess because the lungs are not working on their own that this is something that can happen sometimes. The doctors want her to be at her best when they try to take her off the ECMO machine again. They did an xray after the procedure and it looked good, but they may even want to do it again tomorrow to clear even more stuff out.

They are slowly turning her ECMO down to kind of give her a 'trial' without clamping the machine off before her real trial tomorrow in which they DO clamp the machine off. They just want to see how she tolerates it, so it can give them a view into how she might do tomorrow. So we expect a fairly slow night and then tomorrow might have more action than I want. Stay tuned.

p.s. I have to say thanks to Bryt (Teagan's mom), Teagan is a baby in the PICU with Gracie who was born 10 days before her and has HLHS also. I had visited with Bryt one day and thought his little blanket was the cutest blanket I had ever seen. We had also talked about how you do not want to shower in the communal showers here without flip flops because they are kind of gross. So the next day, Bryt shows up with a blanket just like Teagans but girly with brown fur on one side and a soft brown with pink polka dots on the other side. Wrapped up in the middle were a pair of pink flip flops. I could not believe how nice that was!! She had her sister in law make it for me. I had to mention this because the blanket we used in these pictures was the one she gave to me. It turned out to be the absolute perfect backdrop. THANKS BRYT!!