We went back to the ER last night. Lily was holding her own on 1 liter, then went up to 2. Then needed 3 and that didn't seem to hold her. We called some friends who came and helped Zar give her (and I) a blessing. And then we went to the ER. I just felt like we should go.
Nothing was actually "done" to her. She was listened to extensively and that was it. We came home 4 hours later, but I'm glad we went. Here's why.
Last night I was at the end of what I could endure. I felt like I was watching Lily die, and I was terrified. I was afraid her pulmonary hypertension was getting a million times worse. I was afraid she was shunting blood all over the place. I was afraid we were nearing an "end of life" situation. I was right. And it's okay.
Lily is mixing oxygenated blood with oxygenated blood and sending it out through her body, so yes, her sats are going to be lower. This is because her pulmonary pressures are getting higher. Surgery would be unlikely to help, and it would be very risky and difficult and painful. Maybe meds might help, and we may give those a try. But she is comfortable and cozy, and as long as she stays that way, I'm okay.
We were advised to crank up her oxygen and just leave it. Don't even monitor her. (I can't do that, what with Ella turning the dial down, and the concentrator randomly turning off occasionally) but we turned down the limits. And once we got home last night, we all slept soundly.
We are going to go back in for another echo and make sure we are correct, and see what we can do to keep her comfortable. But at this point we aren't planning on taking any extreme measures.
Over the years, I have often said "THAT would be the WORST." I said it reading "Welcome to Holland" in my first week of Nursing school. I said it looking at clinical pictures of birth defects in class. I said it when I heard that a woman in our neighborhood was pregnant with a baby with no chance of surviving past birth, and she had chosen to carry to term. I said it when I was at an appointment with infant Charlotte and saw another baby her age on oxygen. I said it about kids who required feeding tubes. I said it, knowing it would happen to us, when I saw the obituaries of other trisomy kids I was familiar with. I said it when I read the story of a family who had lost one child, and then lost ANOTHER, to the same diagnosis years later. I said it when I thought about spending weeks in the NICU. I said it, over and over again, when I thanked GOD that Charlotte never had any (confirmed) seizures. And I said it again, after Charlotte died, when I thought of the alternative to her quick passing--that she would linger, and decline, and horror of horror, go into heart failure. And you all know what happened weeks, months, years after I made those comments. And what is to come.
I'm not going to say that anymore.
I'm not going to say that anymore.
I would never suggest that choosing not to take heroic measures is the right thing to do for every family in our situation. In fact, many would consider it "heroic" to send Lily to the NICU that first day, or place a g-tube within weeks of birth, or have Charlotte get extensive skull surgery at 8 months. But those were all the right things to do for my kids, and I knew that going in. But this time, when the doctor said that surgery would be unlikely to help, and that her pulmonary hypertension is intrinsic to her chromosomal issue and not to her PDA I knew he was right, and I was somewhat relieved. As much as I want the miracle surgery and the short, precious, magic years with a sweet and perfect child with special needs, this time it's not meant to be. And I know that this...this isn't the worst.