The Unknown

We entered the PICU in pretty good spirits today. Everything looked like it was going pretty well. Ella was stable on a low support setting from the ECMO machine and they tried to wean her off completely by clamping its tubing so her heart would be doing all of the work. During the time of being “off” the ECMO, her blood pressure was really low so it was time to think of other possible things to try. So right now they are trying to clamp the shunt they just put in to see if t would help. We were told there would be a low chance of it working, but you never know. The next option would be to go back into surgery and repair the leakage in her aortic valve. Everyone thought that the surgery Ella had on Monday would take care of that leak, but unfortunately it didn’t. If the clamping doesn’t work, we are looking at a surgery time around 3pm.

It’s so hard to see her like this. She is intubated and heavily sedated and paralyzed with medications, but when we talk to her or play with her toes or fingers we can see her little eyelashes flutter a bit. She knows we are here. I am so tired of her having to fight so hard. I just want things to get better. I have always heard people say hold your babies tightly and enjoy time with them, but I now know why they say it. We may never get the chance to hold her again. And it hurts knowing that. I keep wondering what it will be like to walk out of here without her and saying goodbye to everyone here at the PICU. These are all things that you never think that you’ll have to do. We can never thank these people enough for trying to keep our baby alive and allowing us to have this much time with her. I am holding tight to the good memories of the nightly walks around our complex all four of us, the times watching Matt, Eli and Ella reading together on the floor, the times of watching her eyes get big when playing with her toys with her on the ground, and the times of kissing her little face even when we knew she wasn’t the biggest fan of it.

We know God has used her life for His good and pray that He continues to do so. I pray that if He does take her soon, that she will be welcomed into His arms and learn all of the things He has done and plans to do with her story.