Feeding tube is in!

We won’t start sending updates daily, promise! However I need to write for my own sanity and I know that at least some of you are on pins and needles thinking about how Nora and we are doing. So I’m sharing these reflections for whoever wishes to read them.

It’s about 9am on Friday morning and Nora and Jason are down in radiology for x-rays. Nora was not at all thrilled with the idea of being wheeled out of her room, still with no food in her little belly. They should return soon and we hope that at about that time the doctor’s orders allowing her to have food this morning will have filtered through the complex university system to Nora’s nurse, giving the go ahead to start putting pedialyte through the tube and allowing her to nurse some. We hope “morning” will not mean 11:59am!

I stayed in the room here because I am finding that it is taking some effort to keep my anxiety at bay. We are on Seven Central of the main University Hospital, which is the same floor as the NICU where we spent about 4 weeks after Nora’s birth. I had almost forgotten how my stomach churns with the sound of beeping machines. They continue to monitor her blood oxygenation levels, which involves having something attached to her foot, a screen for me to obsess over and one that beeps when the levels drop to 90 or below. They keep telling us that needing a little oxygen after being under anesthesia is normal, it just doesn’t feel normal and takes me back to our NICU days.

That being said, I have been surprised at how often I’m not feeling like a ball of tension. I give credit in large part to knowing that so many people are sending thoughts and prayers our way – for Nora’s healing and for Jason and I as we journey with her. We are very grateful for that. I also keep reminding myself that we will remember this time well into the future, but Nora will not. We also keep hoping that before long she will be back to her happy self and will start regaining strength and weight!

Last night I savored my first block of sleep of more than 4 hours since Nora was born. I left the hospital around 8pm, having a hard time not feeling guilty leaving Jason there to sleep (or not, depending on how Nora did) on a semi-comfortable recliner chair. It wasn’t too long, however, before I wondered if he hadn’t gotten the better end of the deal. When I got to Bill and Dottie’s, I was received warmly as usual and it wasn’t long before Dottie was giving me a backrub! I started needing tension-relief more as we watched the weather on the TV, only to note that tornado-like weather was moving through. Once again taken back to my childhood days in Mississippi, we were soon on our way to the basement hallway to wait out the storm. Of course I was trying to call Jason (who didn’t answer because he was sleeping oblivious to the brewing storm) and make sure that any precautions were being taken that were needed for those on 7^th floor of the hospital! And I was calling my sister to have them check Harrisonburg weather and to let Mom know if there was anything she and Kali needed to do. Here I was ready for my first night of sleep and I’m separated from all my family and a mess because I’m not such a fan of big storms and like to have “all my people” within eyesight at times like that. Bill’s humor helped, reminding me of my dad, and Dottie’s lap didn’t hurt anything either, which I almost fell asleep on. What a gift they have been to us!!

It ended up passing us by with some rain, lightning and thunder, but I don’t think nearly as impressive as the weather people were predicting… We headed back upstairs and I to bed. I heard from Jason, who in fact knew nothing of the storm and had had close to a 2 hour nap since I had left. It took me awhile to settle but Anne Lamott’s new book quickly got my mind off the weather outdoors and it wasn’t long before my exhaustion took over.

In the end, all 3 of us got decent sleep. I was grateful to know that Nora slept well most of the night, waking and fussing but settling back down with Tylenol. She woke calm for the first time this morning and has had several calm awake moments since (until they start messing with her to take her blood pressure, temperature, check the incision site and then cart her off to be x-rayed).

Jason and Nora are back from getting x-rays done. She is tuckered out once again and didn’t enjoy being laid on a hard board with her arms placed in different positions in a chilly room. Her temperature has been a little low but they keep unwrapping her. It is probably nothing some warm milk and some clothes wouldn’t remedy, and they don’t seem concerned by it (so I’m trying to take my cues from them – and Jason, who I’m once again relying on for steadiness).

Hopefully all the tests are done for the day. The nurse just brought pedialyte in with bottles to start her – how come orders don’t get communicated well??? First of all, she doesn’t take a bottle. Second, they had clearly said since yesterday that they would start it through the tube and let her nurse. So now she is off to clarify “orders…”

Our day will likely include some teaching with using the button and tube, lots of information to absorb, getting feedings started and seeing how she does with that, and likely numerous staff visitors who either need information from us or have some piece of information for us.

And that will be interspersed with frequent calls to check on our eldest daughter, who by all accounts so far is enjoying immensely having Grandma all to herself! She even got to hold Grandma’s arm to fall asleep and it sounds like about crowded Grandma out of bed last night. Thankfully the worst of the storms at home came after she had fallen asleep.

I’ve been thinking of storms a lot lately, on a lot of different levels. As we weather this new storm in our family’s journey, I can’t help but realize how we journey in relative comfort! We have all our basic needs met (Nora might argue about that right now, but before too long we will be able to respond to all her needs) and we have persons available to assist us if needs arise. As much as I can vent/complain about our immersion into the UVA system, I can’t say how many times we are told to be in touch if we need anything, and I truly believe they would do all they could to meet our needs. As I left last night, I was reassured to see the nurse bringing Jason blankets and offering him coffee or whatever else she would do to make him comfortable. As news of the incredible ongoing devastation caused by the cyclone in Myanmar/Burma filters to us from our many colleagues there, I can’t help but have a different perspective on our current situation. Sometimes it can be so easy for me to focus solely on our “daily survival” through these times, not realizing how even in the amidst of what we would consider our family’s most challenging times to date we are gifted and privileged in ways that we should not take for granted.

I better close for now. I was hoping to include a feeding report in this update but I think it will need to wait for the next one. I’ve filled my “self-imposed” quota of space for any one update, Janelle