DISCLAIMER: My personal blog posts will probably often be long and personal. I certainly don't expect people to wade through them. Writing them out is a way for me to organize my thoughts and emotions and provide a record for me to process later as needed. I'm sharing them with the world because
1) It is a way for me to share my feelings with those nearest to me. I'm not much of a talk it out person but I'm blessed to have a few people in the world who are deeply invested in my happiness and they want to know what I'm truly experiencing.
2) I read through a few of these very personal journals from other CDH parents during my pregnancy and have learned a lot from them. Perhaps someone else will come across these entries when they are faced with this situation and I can pay forward some of the help I received from those who came before me.
What we did
Quentin spent most of the day at Children's sitting with Clarity, meeting with the hospital's social worker, a hospital financial specialist, and meditating in their chapel. Mom and Willow and Kerstin and Cooper visited me this afternoon and he came over to see everybody for a couple of hours.
Back at the hospital, Q met his parents for dinner and got to participate in Clarity's care for the evening. They try to cluster all of her caretaking tasks since she seems to be sensitive to overstimulation by touch. Q got to listen to her heart with a stethoscope and provide oral care. Apparently her blood pressure dropped, which is her way of expressing her displeasure at these events. My impression was that it is an event that is a little scary to be there for from a parent's perspective. I'm going to have a lot of catch up learning to do as I start spending the quantities of time there that Quentin has been spending.
I was unable to get over to the NICU today. My excursion yesterday really wore me out and the second day pain was stronger than the first. I've requested that I don't get discharged until Sunday morning (the latest time possible) so I can have the benefits of being taken care of as long as possible to try to get well as quickly as possible. Quentin has made it clear that my job right now is healing so I can take care of our babies and getting a good milk supply going so when Clarity is able to eat she has access to the best nutrition possible to help her grow. Hospital beds are so wonderful for decreasing the discomfort of getting in and out of bed after a c-section. I am fully intending to go over to Children's tomorrow though. Missing seeing her today was kind of heartbreaking.
One thing I'm starting to find difficult is not knowing if the different tweaks they are making to Clarity's care are indicators that she is not doing well. I tell myself that I just need to trust that they will tell me if she's slipping (and there's nothing I can do about good or bad trends anyway) but every change brings on doubts. This feeling is exacerbated by the fact that every treatment center has slightly different protocols and what may be routinely used at one facility can be more unusual at another.
Tonight, I was happy to discover that the Colorado Fetal Care Center (whose care we are under) has an excellent site describing their approach to postnatal management of CDH. Overall, I have gotten the impression that our center (which has a remarkably high success rate and sees a large number of cases) tends to be very aggressively proactive at keeping vitals in fairly narrow optimal ranges whenever possible. Two pieces of information from today got put into context for me upon reading their "playbook".
1) This morning Quentin got the worrisome news that they're not discerning left lung inflation/tissue. They were giving it a couple more days to see if it changed on its own and, if not, they were going to go in with a scope to try and see what is going on. They seemed to be taking it seriously but weren't overly dire. My mama ears hear all sorts of scary things in that scenario. In the "Airway Assessment" section of the document, there is a description of this type of problem and what they do to work with it. Seeing that it is actually mentioned in their "Pillars of Management" makes it seem a lot more routine and a lot less scary.
2) They started Clarity on inhaled nitric oxide tonight to help with her pulmonary hypertension. Under the heading of Pulmonary Hypertension, CFCC suggests that it's a standard practice here. That eased my mind after I read elsewhere that it's sometimes used as a last ditch effort to avoid ECMO. (ECMO is a lifesaving heart/lung bypass machine but carries a number of risks and is strongly avoided unless practitioners don't have other options for trying to keep an infant from going rapidly downhill.)
Even after the birth of our healthy newborn, Q and I each had the experience of a crash that occurred a couple days into our new circumstances. Sleep deprivation and constantly high running emotions (good ones in Willow's case) frayed our resilience and led to a little crisis.
Today was the day for some reality of our new situation to have hit us out of the blue and we had to take stock and realize that we're way more emotionally fragile than we'd been allowing ourselves to acknowledge. I am blown away by how much I love that little bean who I have only seen twice and barely been able to even touch. Having done it before (admittedly in a much less stressful situation) at least took the edge off a little. I think we're each working in our own ways, independently and together, to try and figure out what's going to keep us going without losing our sanity in the weeks (months) to come. Once again, thank heavens we have a remarkable family support system who we can turn to keep us from losing our minds and rely on to keep providing Willow with a stable, love and warmth filled daily experience while we find our way to our new normal.
This is my third middle of the night blog vigil. Part of it is that I have a pumping session and pain meds dose that occurs around midnight right now. I have been finding it impossible to just "go back to sleep". Tonight is worse, partially because I woke myself up with a night terror at around 11:30p. For me these don't happen often but are a sure sign I'm running at high stress. I dreamed that I had my arms above my head and someone was reaching through a window, trying to grab them and pull me through. At first I was paralyzed but when I got the courage to grab and claw and fight back I woke myself up because I was actually grabbing my arms with my own hands and raking them with my fingernails. Heart pounding and adrenaline pumping, I resigned myself to not sleeping again very soon.
I have found this document, created by an experienced CDH parent, to be an extremely valuable resource from both a personal perspective and a source of nuts and bolts explanations. I'm finding his personal observations of how he coped (especially page 40 and page 54-58) very useful as I try to start navigating this experience.
Now it's time to try and sleep...