A horrible night, what's next...

“Happy” Mother’s Day. I wish that it felt more happy right now. Lots could change between now and the end of the day. And hopefully for the better…

I arrived at the hospital about an hour ago just before 7a.m. after my best night of sleep yet. Jason on the other hand was lucky if he got more than a very few hours of rest. It was a long night for him and for Nora.

When I left last night, I was mostly worried that she would spit up as they upped her feeds over night. The thought I had coming to the hospital was that my sign that it was a “good” night would be if she still had her same onesie on. It was good that Jason called me as I was leaving for the hospital to share the night’s events with me. She was, in fact, in her same onesie and hadn’t spit up at all, tolerating her first 50cc bolus feed at the start of the night just fine.

However, as of midnight they CANCELLED her feeds and she was once again off food until Jason finally pleaded with them just before 5am to get them started again. The scoop is that they were worried that she possibly had aspirated some milk into her lungs in her one and only spit up yesterday around 4pm. The reason for that concern was that she was that her blood oxygenation levels were dropping into the low 80’s when she was resting/sleeping. They had the monitors off her completely until last evening when they couldn’t get a high reading while doing vitals but assumed it was the machines. They got increasingly concerned though after I left (and a new nurse was on that wanted a good read) to the point of taking more drastic measures. She now awaits a chest x-ray to make sure her lungs are clear. She has been listened to by numerous doctors and nurses and her lungs sound perfect to all and no one has noticed any signs of distress. So more than likely this is “normal for Nora” when she sleeps and we just haven’t known that before since, THANKFULLY, we don’t have her on monitors at home. But here they don’t want to take any chances. So we don’t know now if we will go home today and that news is hard to bear!

I just got the official word – not being discharged today. I know in the scheme of things one more day here is not the end of the world. I know on some level that this doesn’t mean some grave set back for Nora. On the other hand, our hopes had been so high and they had been so enthusiastic about how she was doing. It makes me feel crazy inside to think that she is very possibly being needlessly kept here, all because of a small monitor on her big toe! Machines and monitors do not feel like my best friends right now.

This probably gives an impression I’m not intending to give. I don’t want them to let Nora go home if they feel she is in any danger or that she needs to be here for further treatment. It’s more feeling like it is very likely not necessary and she is in no danger at all but is being kept anyway, just to be sure… In the last few days I’ve wondered what it would read if I was on some of these same monitors (I’m sure this thought is making my dad smile, since he thinks I am probably the one needing to be admitted more than Nora…). I wonder how many of us, if hooked up to machines would be kept in hospitals if we had monitors on reading our every breath and heartbeat.

So the journey of the unexpected continues. My worry has turned a lot to our eldest daughter Kali and the thought of extending our separation for another day and of disappointing her that we aren’t coming home today. However, as I started this paragraph Mom called to report that she had talked with Kali about us not getting out of the hospital today. Her response: “I can wait one more day.” And when Mom asked if she would be okay with Grandma being with her until we get home she responded, “That would be fine.” What a grown up girl! I guess we have two troopers in the family! She was up at 5:15am this morning and is now prancing around the house in her Winnie-the-Poo slippers and purple dress with beads, given to her by a CJP student. Mom was able to convince her that a sweatshirt was appropriate attire for this cool morning. We didn’t even give Mom a lesson on starting the woodstove as we weren’t expecting cool temperatures or an extended stay.

10:20a.m. Nora just slept through her 50 cc bolus feeding of breastmilk AND her chest x-ray. She must be tuckered out. She is still resting peacefully for which we are grateful.

Up until yesterday evening Nora had more or less exceeded all medical expectations for how she would be doing post-surgery. She was even given 90cc’s of pedialyte in one shot by mistake. We imagine some resident heard something about that. It was during rounds that I knew something had been ordered off the normal protocol. Dr. McGahren was looking at her chart and all of a sudden got a funny look on his face and said, “Does that say 90?” He made it very clear that they would NEVER give someone that quantity of anything that soon after surgery. We had been surprised too since she has never taken 90 cc’s (3 ounces) of anything at one time in her life. But she handled it beautifully and he commented then that she obviously passed the test. It was because of that “success” that he more quickly moved her to breast milk, so maybe we should be grateful for the error. And it got her good and hydrated, leading to a bunch of soggy diapers in the ensuing hours. Hopefully it also gave her some reserves to help her bounce back from last night.

She was quite eager to nurse this morning and I think it was clear it was needed for comfort and closeness more than anything. I am once again so eager to be able to take care of her at home in a familiar setting to her and us, and to be able to feed her free of cords, IV’s, etc… We hope that time will come tomorrow. Janelle

3:45 p.m. I, Jason will finish up the update with this evening report. Let’s see. Where were we? Ah, yes. Nora was just coming off her second episode of medically recommended starvation. As the day progressed she continued to show me the meaning of hard work and the will to thrive. She has handled every quantity of milk we’ve served her today with nary a gag, though I could tell she really had to concentrate on it. As the day has gone along, she has seemed more and more like herself again. She still isn’t back to the level of vibrancy she had achieved by last evening (kicking legs, etc.), but she managed to utter a noncommittal coo at her little baby board book when I read it to her a few minutes ago. I’m so glad we’ve been able to have at least one of us stay with her around the clock for this hospital stay, because other than that and her toys from home, her life has basically been totally erased and reset within the past four days, from her perspective. She seems to be struggling to make sense of it, but is actually just probably mostly exhausted.

Now the technical pieces. An EKG was performed. Normal. Cardiology doesn’t think they have anything interesting to say about her, but they will do ultrasound imaging of her heart tomorrow (Monday) morning just to rule themselves out. The pulmonary people are not so sure. Based on their observation of her while sleeping (and failing to maintain appropriate oxygen without supplementation), they have a hunch that she has been living with that pattern for quite some time, undiagnosed. They furthermore have a hunch that it has to do with the slightly abnormal formation observed on her NICU MRI scan, in the cerebellum. For medical buffs, this means that the autonomous nervous system may be failing to perform its functions normally, allowing excessively shallow breathing during times of deep sleep. If this is true, little could be done to correct it, but they would feel nearly certain that we could all learn the necessary steps to compensate for it without too much disruption to our equilibrium. We feel less sure than they. They wish to follow up with a sleep study at some point, and feel it is likely they will send us home with orders for oxygen while sleeping and probably oxygen monitoring also while asleep, at least until we could learn her oxygen deficiency patterns (low oxygen over time could damage the heart). All surveyed professionals have declared her lung sounds normal, and the chest x-ray is normal.

Status of feeding program: she tolerated a 60cc feed! But just barely, in my opinion. While I flushed the tube at the end of the feed, she would flinch if I tried a whole cc at once, that’s how full she was. Based on that information and the fact that we’re now going to be here until at least some time tomorrow, they are allowing her to skip a feed, and she and Janelle are doing some breastfeeding instead. Then we’ll do a few 50 cc feeds and see how those go before we try for 60 cc again. Overnight she’ll get continuous flow of 15 cc/hr for 2 hrs, and then if that goes fine bump up to 20 cc/hr for 6 more hours, which is equivalent to the 60 cc feeds in terms of cc/hr overall, but will only require her to absorb 1 cc/3 minutes, since it’s constant. Follow that? Whew. Pay attention in math class, youngins…you may need it.

How are we doing with it all? The prospect of taking medical monitors and oxygen home with us is pushing Janelle to the limits of what she feels she can endure, and I’m getting tired of watching this whole mess do that to her over and over. Last night was horrible for me and Nora, and that is not a self-pitying statement. I kept telling Nora while she protested earnestly that she was one hundred percent right: this was not at all fair. Knowing it was also unnecessary makes my blood boil, but there is no one to accuse, because everyone was acting with compassion and skill and all the kindness they could include. They truly had her best interests in mind…this is, in my mind, the best available care. But that doesn’t mean it’s fair. I try to remember to thank each of the people who work with Nora, especially those who have to do unpleasant things to her. They have no interest in hurting Nora. We’re just pretty upset that we came here to get a g-tube for Nora, simplifying our lives, and now it looks like we’re likely to go home with nighttime oxygen and monitors, complicating our lives.

There is hope that things won’t be so bad, but the lung people don’t put much stock in it: She could still be experiencing residual effects of anesthesia, or she might be so overall beat up and sore and exhausted that as she gains strength the oxygen thing clears up. It is also possible that it could self-correct in the long term, but not especially likely (it’s just as possible it could worsen in the long term). The pulmonary doc was quizzical about our reticence towards the oxygen machinery. Janelle reports wanting to scream, “You think we should think taking our baby home on oxygen and monitors is no big deal?!” She cried instead. If for some reason Nora stops needing sleepytime oxygen before we go home, what a relief that would be.

Optimistic paragraph alert: Overall, this terrible weekend will probably result in improvement in Nora’s health, and for that we must remember to be grateful. She’s really impressing the surgeons with her resilience; her healing seems to be going quite well. Managing the feedings is pretty easy for me, Nora is a champ learning to eat that way. We can give medications and vitamins through the tube now, improving Nora’s quality of life. Nora has actually gained some weight since coming here, which is surprising us and may have to do with I.V. fluids, etc., but is still encouraging. If she has been chronically low in oxygen while sleeping, it’s probably a good thing to catch before it makes problems, despite our being mad about it right now. Everybody has been really kind and dedicated, including our friends and family who are making this work as well as possible (we have to mention specifically Mom Myers who has given the good part of a week to be with Kali in our home which means the world to us – and I imagine our home has not seen such good care in months). Our health insurance is comparatively excellent.

I think that’s all for today. Who knows what tonight will bring?

Waiting on the light, Jason for the Myers-Benner family.