Dear friends,
Hope you all had a good start to your weekend, it was a beautiful Saturday here in Denver. Someone remarked to me a few days ago that it seemed that Madeline’s struggle was no longer life and death, but that she was just trying to grow and get stronger. Oh how I wish that were true.
Madeline was supposed to get her vent tube out on Friday (yesterday) but that has been delayed. Thursday night she had, yet again, a new nurse who didn’t know our little girl very well. While suctioning out Madeline’s vent tube, her stats began to drop, prompting her nurse to bag her. The bagging didn’t go so well and Madeline’s heart stopped.
This is hard… With chest compressions and more bagging they were able to bring her back and get her stable and snuggled back in. Some of this extra commotion along with the steroids she is on, has caused some extra fluid to build up in her lungs. They are going to try and get that down and maybe address removing the vent tube again in a few more weeks.
When I got here tonight she had a lot of water in her vent tube (from the humidifier). There was so much water that occasionally enough air got behind the water to push a wave up the tube and near to her mouth. I went out into the hallway to get a nurse, no nurses.
I grabbed a nurse from next door and told her about the problem, she came in and hastily disconnected her tubes, shook the water out on the floor, and reconnected her. With that, Madeline brady’d, dropping her heart rated down into the 30’s and her sats plummeted with it. Madeline’s nurse (another new one) came cruising in, alerted to the alarms, suctioned some fluid from her lungs, turned up her oxygen, and slowly Madeline came back around.
How I wish she were no longer in danger. It’s amazing to me the really fine line that Madeline is walking. Madeline is right around 1.95Kg, or about 4.3lbs now. She was over 2 Kg before her last surgery and has been gaining and losing each day and is roughly where she was 2 weeks ago. Madeline has seemed uneasy and uncomfortable for the last few days. Lisa thinks it’s related to her diet and the Enfamil and had a long.
The change out with all the new doctors is a real struggle for us this time. Lisa is doing a great job of sharing her concerns with the doctors and learning to trust her instincts and speak up more about Madeline’s care. Still, it’s hard at this junction to form new relationships and to learn to trust new doctors. Please pray a lot for this, pray that the new docs can quickly learn about Madeline and how she operates.
Pray for Madeline, she is supposed to be gaining about 70 grams a day, and hasn’t really gained anything in 2 weeks. Pray for her lungs to improve to the point she can be removed from the ventilator. Pray for her to stay healthy and be strong. Pray for Lisa and I, that God would supply us with what we need to see this through.
Light at the end of the tunnel. Yesterday there was a news crew and photographers here. 3 moms who met here in the NICU 1 year ago, who had sons with heart defects had returned on the weekend of their first birthday to deliver 1,000 blankets and show off 3 happy, healthy, baby boys. And Tessa’s son, Izak, has been released. His twin sister Lauren will still be here for a while, so his family can’t return to Montana quite yet, but for now, they can cruise around town with one baby in the stroller, and that makes me happy.
Grace,
Shanker & Lisa.
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