I have written several times on this blog about how we have had to readjust expectations throughout this process. Realized or not, we carry expectations about becoming parents and what we think our children will be like. Even when we knew that Clara would be sick and face some difficult times, we still didn't really expect to be on ECMO, didn't expect to have doctors tell us she would die, didn't expect to be in the hospital quite as long as we have been. We continue to remain so very very grateful that we are where we are now and not where we were five or six weeks ago. But I'm still having to adjust my expectations - of myself, of Clara, of the doctors, of timing in general. As you've no doubt read by now, we had a little reality check this week about Clara's homecoming. Tuesday's morphine withdrawal was more significant to the doctors I think than I even realized at the time. We have to be very very slow with this weaning process because a bad withdrawal fit could trigger a pulmonary hypertension episode which would cause a big backslide and well, we don't want that. So we've slowed the sedative/painkiller wean pretty significantly and are in general taking things very slowly. I recognize that this is good for Clara and we want what is best for her, but the slower pace has been a challenge for this very driven mama. Dr. Yang is very intentional about not doing too many things on any given day so that if there is a problem we can hopefully identify the cause of it. This makes sense and is good, but day to day I sometimes struggle with feeling like we're not making much progress. I know it's not true. We are making progress. It's just a lot slower.
I feel such a strong urge to bring her home now. I think in part because she looks so good and seems so healthy and stable in a lot of ways, I just feel like I could walk out of the hospital with her in my arms on any given day. I remember a few short weeks ago when I wanted so desperately to hold her and now I feel that same strong desire to have her in our home with us. I am also struggling with feeling a little guilty/greedy about wanting her home. I remember clearly saying six weeks ago that if we just knew that she would live I could face anything. We know now that she'll live and so I get frustrated with my own impatience about having her at home.
But I'm less anxious and sad and disappointed today than I was even on Wednesday. It's just taken me a couple of days to let go of the totally random and arbitrary "June 1" deadline I had created in my head and to try to readjust my expectations once again that we'll probably be in the hospital for at least another month. I'm tired of being there. I'm tired of spending all day in a dark beeping room. I'm tired of not having privacy. I'm tired of going to a separate room to pump every three hours. I'm tired of eating out and eating in the hospital. I'm tired of it all. But I'm also still so so thankful that we're in this wonderful place with this incredible staff and wise physicians and patient and loving people. I'm thankful that we're not as critical and that we really only have three issues left to resolve (oxygen, sedative wean, feeding). I'm thankful that I have the support of a wonderful family and a generous community of friends and strangers who are surprising us and sustaining us through every minute of this. I'm thankful that I get to spend hours with Clara in my arms and that she loves it there. I'm thankful for so much and am trying to constantly remind myself of all of that in the midst of feeling eager and impatient about the next step.
Today we further condensed Clara's feeds. Now, instead of getting a continuous 25ml/hour she gets 75ml over two hours and then has one hour off before we resume feeds again. This is a slow process too, but a very important step towards being on "bolus feeds" and eating all at once like a typical baby. She hasn't spit up as much recently, so we're thankful for that and hoping that she will continue to tolerate the condensing. We also stopped her sodium, with hopes that her levels will be better on her next labs (the sodium is likely a contributor to spit up/vomiting). Her flow is now down to 1.25 liters and she's still on around 30% oxygen. We weaned her morphine today and will continue weaning it every other day, as tolerated. We also switched her versed to ativan earlier this week. Those drugs are in the same family, but ativan is slower acting so she only gets it three times a day, as compared to the six times a day she was getting versed. We continue to work on her OT and PT and also got a Speech Therapy consult this week (We're teaching Clara to talk! Not really. Speech in infants is more mouth/eating stuff). Her incision site and pressure sore continue to heal well. So, see? When I write it all out it does seem like we're making progress!
Here are some photos from today. Winston-Salem just got a brand new Carters store. So, so dangerous. Be on the lookout for some super cute outfits coming up...
And just so you know, as cute as this thing is, she can still cry and be fussy:
But Sweet Mama makes it better:
Thank you for your faithful prayers as we continue on this journey. Whatever the pace, we'll get there eventually. And we're learning a lot along the way...