I’m writing this on the morning after one of our worst nights yet since arriving home from UVA last Saturday afternoon. It continues to baffle my mind and cause my heart to ache that the procedure that had been recommended to bring our family relief is creating anything but. It may be that relief is right around the corner and if so Jason and I are eager to experience a taste of it. Since we have come home, it has been a whirlwind of learning: trying to figure out maneuvering around the house with the oxygen tubing, watching Nora and trying to constantly trouble shoot what is causing her pain or discomfort and what feeding regimen will work for her, balancing monitoring her oxygen levels enough to catch a problem time but not so much that the numbers rule our day (and in the last few days feeling worried as we have had to use higher levels of oxygen to keep her sats in the range they recommend), not having a clue how to balance the needs around the house with our energetic almost-5-year-old’s need to play and to have stress-free time with Mommy and Daddy, needing time to connect with Jason and talk about all that is going on but not wanting to do that in Kali’s presence, now using a feeding tube to boost Nora’s nutrition but seeing how desperately she needs nursing for comfort and connection and trying to figure out how to get both for her, watching her g-tube sight leak milk and sense how fragile that area still is as it seems to bleed at the slightest bump, etc…
We’ve had several visits from our home health nurse (for Mom’s side of the family they may be interested to note that she is Sharon Lambert – soon to be Sharon Kisamore, marrying Uncle Jon Bucher’s old Harman buddy Dave). Nora is currently about 5-6 ounces more than she was when we left for UVA to have the g-tube placed. So if weight gain is the goal, I guess we have experienced some level of success. It just has come with A LOT of grief and on a very gut level hasn’t felt very worth it.
I know that medical professionals would say that Nora is better off now than she was before our week stint at UVA – that it is a good thing we caught the pulmonary hypertension now and can work at treating it. I know that they feel that in the long run having a feeding tube for boosting her nutrition and administering medications will be essential for her growth. I’m not sure I have good reasons to dispute this other than it pains me to see her continue to be miserable and to suffer lots of discomfort and to feel like I only get very small glimpses of the baby I was getting to know pre-surgery. Yes, we have gotten some smiles and some coos since we arrived home. But the balance is still tipped towards fussing, screaming, grunting, and expressions of general misery.
We had really hoped this would make nights more manageable for me in particular. Currently it just seems that both Jason and I are up a lot. He is the pro at the tube feedings so handles 95% of everything related to that. However, she gets really worked up often times when she is only getting tube feedings and not nursing. So we now have a tedious balance of nighttime continuous feedings and her nursing in addition to help settle and calm her. While we’d like to get to a place where she doesn’t need to nurse much at night (so we can once again get more than a 2 hour block of sleep at one time), having her get worked up and crying makes her oxygen saturations plummet and the pressure of her bearing down and crying makes the leakage from her site much worse. So we feel pretty caught, not to mention that it is heartbreaking to see her cry like that, particularly when it comes with a look of fear or panic in her eyes that I don’t remember seeing prior to this week.
So I find myself having a hard time not asking some big and difficult questions – about Nora’s care, about our highly advanced medical technology, about quality of life versus quantity of life, about choices and lack thereof, about what it means to love these little persons entrusted into our care, about good stewardship and use of resources, etc… And I do that on a small amount of sleep and mostly internally, when processing with others tends to be much more beneficial and productive for me.
We continue to feel grateful to the many of you remembering us in your thoughts and prayers and journeying with us in these uncertain times. At this point we head back to UVA on June 6th for some follow up appointments. I imagine we will be making more phone calls between now and then, if nothing more than to reassure us that there is nothing more we should/can be doing for Nora at this point.
We will also continue to try to establish routines at home that include fun and lightheartedness for Kali, as hard as it is for Jason and I to muster the energy within ourselves for creative imaginative play. I’ve thought so much this week about how I want our home to be a safe and comfortable environment for Kali to grow up in. It has felt very stress-filled this week and she has responded to that clearly. One night in an all out screaming melt-down packed with emotion she told Jason that we would never be okay again and then later on asked Jason if he was glad that we have Nora. She has also admitted that she thought the nurses were going to take off the cords before sending Nora home. All we can tell her is “so did we” and to try to explain that we are going to be okay, even when Jason and I wonder ourselves.
Janelle
Ps. A few pictures for you: the newest life on our property – baby Phoebe’s on our porch (in honor of our sweet neighbor baby Phoebe, who is Nora’s age and was quite interested this week in checking out her new tubing – see photo); big yawn from Nora and kisses from her big sister
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