She was alert and awake and happy a little bit today, but mostly when she was awake she was a big fussy-pants. I'm not really sure what her issue was. Some theories: itchy from the morphine (we gave some benedryl this afternoon), more awake and aware of her ventilator which she is really ready to be done with, hungry since we stopped feeds for a couple of days (I swear I heard her stomach growl this morning - we Hardys do not like to be deprived of our food), hot at one point (?), a dirty diaper (she's really a princess when it comes to a dirty butt), tired from being awake a lot last night, or just plain baby fussy. I know it's normal for babies to cry and fuss and be unhappy. I don't mind her acting like a normal baby, but it's really difficult to watch the silent cry, not be able to hold her, and worry that she might be in pain or that her fussing could lead to desating. For the most part today she didn't desat when she was crying - there was only one episode of that this afternoon and that was when we knocked her out with some benedryl and extra versed and she recovered quickly. As of this evening, she is sleeping peacefully and sating high.
We're keeping on keeping on. (That sounds normal when you say it, but looks weird when you write it.) Smaller baby steps the past couple of days, but we're still taking care of things that need to happen for her to get better. I'm growing a little eager to extubate, but certainly want for her to be ready before we do it, so once again I'm trying to work on this whole being patient thing.
Oh! There's this. I "held" her today. Okay, it wasn't a real hold. But I lifted her from her bed ('light as a feather, stiff as a board' style) for the nurse to change her blanket from underneath her after she spit up. It was just a few seconds, but at least I had her in my hands...
Here are some photos of Clara at five weeks:
|Today's hairbow is brought to you by the letter U for Umbrellas. April Showers bring May Flowers, right?|
|Clara's first real tear. That's from pulling the IJ line out.|
|Baby with tear. So sad.|
|A brief happy moment, hanging with her jungle friends|
|"BLEGH! I hate this tube! Get it OUT!"|
|See that hand wrapped around her tube? She really wants to pull it out. Smart kid.|
|This is the sad face we saw most of the day today. Actually this one isn't even as bad as it was. But I told her, "Hey, it's okay. Sometimes a girl's just gotta cry."|
|dainty long eyelashes|
|And sweet little lips and tongue.|
A happier day tomorrow, filled with more steps forward like continued weaning of sedation, increased and tolerated feeds, no return of chylothorax, no more gagging on that tube, reduced ventilator settings and general tolerance of all of the above! Continue to pray for her pulmonary hypertension which is her biggest medical concern at this point and we have taken away her big PPHN medications (flolan, milrinone and nitric oxide). Pray for her team of caregivers including nurses, doctors, nurse practitioners, residents, fellows and physicians. Pray for her tired mommy and daddy who continue to try to pace themselves for this marathon when sprinting is maybe more my style (metaphorically speaking. I, of course, do not actually run sprints or marathons!)
Today Sumi, one of our favorite respiratory therapists from the ECMO days and also one who continues to care for her in the NICU came by to check on Clara. Mom asked her if, a couple of weeks ago, she thought that we were ever going to make it to where we are now or if she thought we were going to lose Clara. Sumi answered by saying, "I had faith that she would get here. I think it was the prayers that really helped." It was her way of saying, "Medically, no. But because of love and hope and many prayers, yes." We continue to stand in awe of this miracle. Thanks for being the team of prayer warriors who have faith that we'll bring her home too. Your continued prayers will make that a reality someday, too.
For where two or three gather in my name, there am I with them.” Matthew 18:20
Thanks for gathering with us and inviting God into this sacred shared space.