PICU

9:30pm After over 15 hours in the PICU today without much of a break from the action (including nursing Nora often more for comfort than nutrition, meeting with countless health professionals and continually having my vocabulary, brain and emotions stretched to the limits, and trying to ignore beeping monitors) I feel pretty fried by this hour. As I type, Nora is doing her low grade “I’d rather be nursing that getting a g-tube continuous feed to fall asleep to” fussing and Jason is singing to her. I hope sleep comes for her soon as it has been a pretty tiring day for all and she really hasn’t had a good nap all day today.

Before I try to bring you all up to speed on the happenings of the last 24 plus hours, I want to do a big mass “thank you” to all of you who are receiving these updates (we realize our “update list” has expanded well beyond the borders of those that we know). We are grateful for the many emails sent with words of support and comfort and caring. And we are thankful for the many offers of help (and may take many of you up on the offers once we land back in Keezletown). I look forward to the day when I once again have the luxury of responding to each and every email but the days right now have gotten to the place where that is not possible. But know that all the emails are read and they help to sustain us, as do the phone calls even when we can’t answer, the thoughts and prayers and the visits.

Speaking of visits, I know some of our Harrisonburg community will likely wonder if we want/need visitors. While we’d love nothing more than to be physically surrounded by loved ones and our community during this time, our current accommodations are not great for meeting that need. The setting in the PICU is somewhere between that of the NICU where we were after Nora was born and 7 Central where we last were. The regulations are a bit more stringent and particularly with Nora’s condition of pulmonary hypertension and the desire to keep her calm as possible, no more than 2 persons are to be visiting her at a time – and that would be mommy and daddy right now. It is possible at some point we will be transferred out of the intensive care and at that time may welcome some visitors. However, I continue to feel a bit baffled by all the people who “want a piece of us” while we are here. We aren’t sitting around waiting for action most of the time. And the “only 2 persons” rule definitely doesn’t apply to the medical persons. I think at one point today when Dr. McGahren from Pediatric Surgery stopped by to look at her g-tube, there were about 8 or so other persons with him (his nurse, residents, medical students).

So a quick run down: From what we can gather, Nora did not really enjoy her first helicopter ride. We gather this from a number of nurses noting how “mad” Nora was at them when she arrived. By the time I arrived later in the evening (thanks so much to our good friends Risha and Mike who chauffeured me here so that I didn’t have to drive alone), things felt pretty grave. She was up to about 5 liters of oxygen with her saturation levels still not staying as high as they would like. They switched to a high flow nasal cannula and that is what she remains on up until this point, currently at about 2 liters.

Both Jason and I felt really grateful last night to have two incredible doctors on that sat with us in a conference room here in the PICU and spent well over an hour talking with us. It happened that the attending doctor on also happens to direct the Palliative Care Center here. It was helpful for me to finally have a place to say some of the things that have been welling up in me; to express the fears and to express the desire for Nora to receive care here but to keep her comfort a top priority.

At this point the dominating hypothesis regarding what is going on is: too much fluid. You’ve got it – we’ve been “over feeding” our baby. Does that make me want to scream? YES! We brought Nora in for a g-tube so that we could get more milk into her little body and help her to grow. The jury was out whether she could tolerate the increased feeds. The team from our last stay worked with us to get her to what they considered “maximum feeds” before we were sent home. We went home with instructions on what she “should” be getting daily and we did our very best to follow that. However, we were concerned that she just seemed really full so in the last week or so had actually, after making some calls to UVA, adjusted the feeding regimen down a bit. What we have been told by the current team is that the amount prescribed for her is way more volume than a baby of her size with pulmonary hypertension should be getting.

So where does that leave us? Right now they are giving her a diuretic 3 times daily to try to help her get rid of excess fluid by urination. Besides that we are lowering her feeds to about 20 cc’s/hour (with quite a bit of variation depending on how much she nurses). Tomorrow they hope to get our permission to start fortifying my breast milk to up the calorie content so that she can get more calories with less fluid (and the nutritionist today seemed very doubtful that my milk really was tested to be 26 calories/ounce until she asked us where it was tested and we said here in their NICU and then she mostly seemed baffled since she had never heard of anyone’s milk have that high a caloric value). Tomorrow they plan to do another echocardiogram to check if there have been any changes in her cardiovascular status. They have done another chest x-ray and feel that her lungs look somewhat better. Today it has felt kind of like a waiting game. Waiting to see if the medicine helps. Waiting to see how she does with the lower amount of volume. Waiting to see what we learn about her heart. Waiting to see what is around the next corner in this journey.

Jason and I are journeying together in this and are once again balancing each other out – in other words we are experiencing this differently and at times have divergent feelings about how Nora is doing or what we think is coming down the pike. I’m sure from reading our updates no one will be surprised to learn that Jason continues to be my eternal optimist and continues to root for Nora and will do everything possible to give her the very best chance at reaching her full potential. And today she cooed for him a lot at one point and when I was holding her I am convinced she was looking around for him until he came to her side and she got to play with his beard to her heart’s content. I’m pretty sure if he was the one lactating she wouldn’t have near as much need for me!

I think I have partly shifted into “self-preservation mode.” I’m scared to hope again. I’m just not sure my emotions, until I have more sleep under me, can tolerate too many more waves of the magnitude we have ridden in the last day or two. And there is something so strong in me that is crying out for some kind of relief for Nora and for those of us close to her that are loving and caring for her on a daily basis. While I know on one level that it is unlikely Nora will be permanently scarred from this time and most definitely that she won’t consciously remember this time, her cries continue to break my heart.

I also just long for the freedom to pick her up and walk her and cuddle her without wires that tug and pull and frustrate her (and me). I haven’t counted but we are pretty close to our NICU quota of wires and transferring her from bed to arms and back is no small task, and definitely not one for just one person. So she has every right to feel a little bit cranky right now.

She has now settled and is breathing more easily than we have seen her do in awhile and I’ve only seen 100% on the saturation monitors for the last 15 minutes or so. What changed from one hour ago when she was desaturating into the 70’s and crying and coughing horribly? (Jason interjects here that it seemed horrible to the parents but the respiratory therapist was pretty unimpressed). That is why we are here, to try to find out and then to try to determine as best we can what kind of care we need to provide for Nora.

I’m already over my quota of space and I feel like I’ve just started. But tomorrow will be a new day and there will more to share with you. Nora is sleeping so we dare not miss our chance to get a little rest too.

One of the things making me feel so grateful tonight is the WONDERFUL care Kali has received in our absence. Once again Kristin and Phoebe came down for us to go to the doctor yesterday afternoon and Kali was with them (and Carl) until my folks just arrived at our place in Keezletown about 2 hours ago. I can’t say all that is happening in our family’s life right now made for a very Happy Birthday today for my dad, but at least Kali got to hand deliver his card to him on the actual day. Kali will be with Grandma and Grandpa now until next Tuesday, going on a mini-vacation to West Virginia with them and will be the Myers-Benner representative at my cousin Jason Bucher’s wedding on Saturday. We’ll get a glimpse of Kali tomorrow when Mom and Dad bring her to visit and will hopefully get our “Kali kiss and hug tanks” restocked. We miss her!

But Nora makes us smile too. She is insistent right now on figuring out books. She gets frustrated if you help her and really wants to look at them herself. It is cute but one of these times she is going to clunk herself good as even our tiniest books are a bit heavy for her little hands. She has also endeared a good number of nurses to her with her pacifier antics. We need a big sign on her crib that says “baby LOVES pacifier, will NOT suck.” I came in one time to find a nurse trying to calm Nora by trying to stuff her pacifier in her mouth and Nora being quite frustrated at her. I had to explain that our baby fiddles with her pacifier, inspects it from all angles and chews on various parts, but she does not suck it. And she continues to take in everything that goes on around her and everyone that walks in the room. She has clearly not given up her interest in life!!

We continue to feel grateful for good and attentive care providers, who have taken lots of time with us (making us feel at times they have nothing better to do than talk with us for hours – thanks Dr. Braddock – when we are well aware that there are many persons vying for their attention). Jason and I are a bit more vocal this time regarding our needs, our assessment of Nora’s needs and trying to make sure we have a clear picture of the plan for her care. Hopefully this doesn’t wear too much on those working with us, but we are weary and in need of as much and as clear information this time around as is possible (with our baby who is “writing her own book”).

I want to end with one of the poems that Jason’s sister Christie included in an email to me this morning. What more to say for now? Janelle

from Hafiz, Sufi poet:

WE HAVE NOT COME TO TAKE PRISONERS

We have not come here to take prisoners,
But to surrender ever more deeply
To freedom and joy.
We have not come into this exquisite world
To hold ourselves hostage from love.

Run my dear,
From anything
That may not strengthen
Your precious budding wings.

Run like hell my dear,
From anyone likely
To put a sharp knife
Into the sacred, tender vision
Of your beautiful heart.

We have a duty to befriend
Those aspects of obedience
That stand outside of our house
And shout to our reason
"O please, O please,
Come out and play."

For we have not come here to take prisoners
Or to confine our wondrous spirits.
But to experience ever and ever more deeply
Our divine courage, freedom, and
Light!