This baby has endured so much that now she can have a severe desat and still just laugh and wave goodbye to everyone as we rush out of church to get her plugged in to higher oxygen, wait on the home health nurse, speak with the doctor, and get more meds pumped into her.
This poor baby. She is so happy, though! Her feet and hands were black. Black. We are past purple, and her little chest rattles when she breathes. She has a cough as well, but is fighting back a fever.
She did wake again just in time to make us all late to church, but it’s so good for her to get out when she can, and I was so excited that maybe I would get to go to church today. We barely made it to our chaos pew, still in the front row in case we ever have interpreters, and nearly missed taking sacrament. But we didn’t, and we made it, and I got sacrament for the first time in weeks. I needed it, and am glad we made it, even if we were late and I had to leave early with her.
In an ideal world, I would be clever enough and strong enough to send the family ahead after they worked so hard to get ready on time. They really did! We spent the morning watching the church videos of the Easter story, even crying our way through Gethsemane and the crucifixion, and then breathing with relief and in awe at the resurrection. It really was a lovely morning, and we were ready in plenty of time.
Except for Kirk, who somehow didn’t have his braces on yet and could only find one shoe, and so decided to wear one church shoe and one snow boot.
But otherwise, we were ready to go and I was ready just in case, but the baby was asleep and not feeling well, so I knew I would have to stay home.
Except then she woke at the last minute, so I threw on her Easter dress while the kids loaded up in the van.
I was so excited to go!
She did great, waving hello, and even standing some, which she hasn’t done much of in the last week or so while being so very sick. She ate little cleft-palate puffs, and she played with her brothers and sisters, visited the grandparents, and crawled back over to me and then on to Nathan. She was smiling and waving and saying, “hiiiii” in her nasal post-palate-repair voice. It was so lovely for us all to be there together!
Then her hands turned red.
And then blue.
We turned her air up another half liter.
She kept playing.
Then her sats started dropping, enough I expected her to pass out, but she just kept smiling and waving, while the monitor alarms were going off.
That silly girl.
I got her home, the nurse paged, the pulm paged, the ENT notified, and turned up her air again.
I gave her more steroids, which is not making her cranky unless we are holding her, and her oxygen is now holding in the 80’s. She was so weak by then that she didn’t even try to sit up or play during her diaper change or while I changed her clothes again. An outing was just too much, and I felt terrible for trying.
Except that I really, really needed to go to Sacrament, and she seemed happy to be there.
I missed Kirk’s primary talk, but will share it separately, because it really was his testimony and my heart is so full for him.
In the meantime, I tried to keep myself busy with scripture blogs ready for this week, my own study, bringing our house “in order” and getting her monitor stickers and next round of medicine ready for when she wakes. She is so weak, but fighting so hard, and once again we try not to be anxious as we wait for the end April to come, that we can get her to Cincinnati in time for the next round of surgeries.
She made it to Easter, though, her very first one, and no one can take away that, and its in the very promises of Easter that we yet have hope.