Kali's sick, life's complicated

I think this will be a short update since there is not a whole lot to convey today. This is, I keep reminding myself, a good thing. Regarding Nora herself, the news is all neutral or good. After having lost weight two days straight (30 grams Sunday, 5 grams Monday), she’s up 60 grams today. An ounce is 30 grams. I think that puts her at around 3 lbs. 13 ounces, but I’m not sure. They think that around 4 pounds is when she may start to regulate her temperature dependably and maybe move to a crib. Once that happens, they will possibly become bolder about trying to wean her off the feeding tube.

So there are two big questions on our minds regarding Nora’s care. One is the big mystery question that is still not answered, and the other is, ‘When can she go home with us?’

As far as the mystery is concerned, they are still waiting for definitive lab results, but have so far ruled out everything it is in their power to rule out. That is to say, she had a basically normal brain MRI, a normal preliminary karyotype, and no other definitive findings by dermatology, neurology, etc. I expect the genetic tests UVA can do will yield no definitive results. There is apparently a lab in Rhode Island that my dear Mom has made contact with which may be interested in running their tests on Nora, but that is pending UVA exhausting their ideas.

Assuming test results that do not indicate an immediate health crisis for Nora, the questions yet to be resolved before we go home with her are more pragmatic in nature: can she eat by herself, can she maintain temperature, is she gaining weight, etc. We had hoped that perhaps Rockingham Memorial Hospital in Harrisonburg would be willing to admit her as a patient so that we could move this routine home, but that seems unlikely at this point. Nora’s doctor here called RMH, and they feel very tentative about having her there, because she’s such an unusual case. If she were a recovering preemie, it would be different. He said that he’d hate to send her there if they are tentative, because they might get scared about something and rush her off to UVA for no reason. I appreciated his logic. So chances are we’ll go straight from here to home. We may have to finish up the tube feeding weaning at home, but we’re sure hoping not. In any case, once we get home I’m sure we’ll be better off, but it may just be the beginning in terms of testing, if they can’t get this girl figured out while we’re here. Nora’s doctor assured us that they would do their best to bundle the appointments so that we wouldn’t have quite as many trips to make.

All of that feels pretty far in the future right now, even though it may be as little as a week away. We’re currently just trying to make this routine work, and be the best parents we can be to both of our children. Janelle continues to feel pretty taxed by this experience. It hasn’t helped that today Kali has come down with an illness. Whether it’s a viral illness (cold, etc.) or the manifestations of what looks to me to be an infected finger from getting it stuck in the car door the other day is hard to say. Janelle has her at a doctor’s office here in Charlottesville right now and I am eager to hear what they have to say about it. If Kali is sick, she can’t visit. If we are sick our visitation is also limited though not always totally denied. How to balance the benefits of the presence of parents with the risks of infection for such a vulnerable little one? We’ll have to look to the health care providers here for help in navigating this one. So far I feel fine, but Janelle is not sure if she’s caught it yet or not. Of course every twinge and drip that would ordinarily pass without notice seems to carry tremendous significance now, and for good reason.

We thank you all for your steady, constant support. It has made a tremendous difference to us. Jason

Wednesday, November 14, 2007

It’s now Wednesday around 11:20am and I (Janelle) have just stepped out of the NICU for a quick break before heading back in for the noon feeding. After not being here for about a day and a half, I came back in for the morning shift today. I spent yesterday mothering Kali who tends to be more of a mommy’s girl when she is not feeling herself. The doctor didn’t seem overly concerned about her finger or her cold at this point so we are to just wait it out and try to make her as comfy as possible and try to keep ourselves from getting it and passing it to Nora. It has complicated our lives even more as we try to figure out our schedule keeping Kali away from the hospital and other children until she at least isn’t fevered anymore.

She seems to feel, according to Jason’s report, much perkier today so hopefully it is moving out of her system. It sounded like she was enjoying a fun morning of outdoor playing and exploring with Daddy – probably good for both of them.

Nora woke up soon after I arrived this morning and was good and alert for her first feeding of the day. She did a good job breastfeeding before getting her tube feeding of fortified breast milk. When I left she had so far kept all of her breakfast in her belly. Her spitting up seems to be happening a bit less frequently and if that continues, my anxiety will likely diminish some as well. Yesterday evening she successfully took about 15 cc’s from the bottle for Jason which is the largest amount yet. That is about half of her feeding so we still have a little ways to go.

This morning her weight was down 5 grams (1/6 of an ounce). While it would be easy to feel discouraged, it was probably too much to hope for a big jump two days in a row. She has about 4 ounces to go before hitting the monumental 4 lbs.

This morning Dr. Kauffman mentioned their hope to get the final test results today and he also mentioned working towards getting us home next week. Nothing is definitive yet and while I’m so eager to be home again, caring for a 4lb little one on our own also feels a bit daunting right now, especially if we are still needing to do tube feedings at that time. It continues to feel like the best policy to try to take things one day at a time as much as possible!

Thanks to all of you for your support, thoughts and prayers. I am not sure how we would be making it without all those surrounding us. And I am quite convinced I would not be making it all without Jason’s steady and optimistic presence and Kali’s hugs and kisses and her enthusiastic “I love you Mommy.” It is hard to face feeling many times every day that I’m not able to mother either of my children the way I would like to right now. I feel uprooted and without control over so much right now. I’m working at finding the things that I am able to have some control over and am also taking the advice and encouragement of many to attempt to be more gentle with myself and to find ways to work on my own healing and processing of the happening of the last two weeks since Nora was born, the time preceding that and some of my fears for the future. It is quite clear that the journey is just beginning.

Thanks for the ways that each of you are present to us right now. Love, Janelle