46 "normal" chromosomes

It has been about a week since some of you have heard from us! From the emails I’m getting, I’m gathering that it is about time for a more formal update from us to all of you that have been journeying with us over the last number of weeks. Just so you all know, we are sending more regular updates every few days to our family and those of you that have requested to receive them. Feel free to email me if you want to be on that list. Otherwise, we’ll try to do an update every week or so with the highlights. There are also some new pictures online at http://picasaweb.google.com/hesemyers under Nora Lynne Myers and some under Janelle’s Nikon 950 pictures if you scroll down to the very bottom. Now for a bit of an update on how all members of our family are doing.

Nora continues to remain a mystery to many in the medical community here. As of today we learned that all 3 variations of the karyotype (looking at her chromosomes) testing they did have come back normal – she has 46, she is a girl, there are no additions or deletions or variations at the ends of the chromosomes. So they can rule out a whole host of possible problems. The geneticist is recommending another round of blood work to do a chromosome microarray analysis, which is a comparative DNA study. This morning when I talked with Dr. Braddock (the geneticist), it felt like we were at least on the same page with our motivation for finding out what is causing some of Nora’s various issues. Neither Jason or I have a desire to go on a bunch of different rabbit trails of testing merely to get a label for Nora. However, if we can get an understanding of the root cause of some the things they see in her, it may help us both have a better understanding of what to expect in the coming years and may also give us clues of how we can best parent and care for her. However, we are very aware at this point that the most likely scenario is that we will be discharged before we know much more than we do right now.

Yes, they are starting to talk about discharging us. As of this morning it sounds like the week after Thanksgiving is the most likely scenario. Unless she begins feeding a lot better by bottle or breast, Jason and I will be trained to feed her via her little feeding tube. The main goals in the coming week or so are to continue to practice eating by mouth and to wean her off of her isolete (warmed box that has her little bed in it). She is moving in the right direction with both. She has been spitting up much, much less, which has lowered my anxiety being here, and has also started to put together that Mommy = food. She has started doing that very familiar rooting around and even gets good and feisty when food doesn’t come fast enough. Those are all welcome signs. We’re also starting to discover positions that she really likes and each little moment in which we feel like we figure out one of her clues helps establish a bit more of connection between us and this little one.

Her weight as of this morning is 1770 grams, up 40 from yesterday. She has been up and down with her weight but the overall trajectory is moving steadily up. In pounds, she is now 3 lb and 14.5 ounces. It feels like 4lbs will feel like quite a milestone and we are eager to celebrate that day which is hopefully coming soon. They have said often that around 4lbs babies are better able to regulate their temperatures, which is one of the main hurdles to going home.

Much of the other testing they have done has come back normal. Her vitals remain very steady in room air. Her MRI showed nothing of great concern. She is getting regular visits from occupational and physical therapists, which I have to admit at times feels just a bit overboard. She gets examined and poked several times a day and normally passes all physical exams with flying colors. She just needs to get a lot more padding all over her. I think both Jason and I are getting a little more confident holding her and moving her around but it is still by no means comfortable all the time. It has gotten easier the fewer wires and tubes and cords she has coming off of parts of her body. She only has her little feeding tube and then monitors on at this point. She is much happier with her little arms free to bat around at things, and that sometimes involves pulling at her feeding tube which we try to discourage!

Now for the rest of the family! Kali through us a curve ball this week when she woke up Monday morning with a drippy nose. So much for our plans to spend more time together at the hospital. Jason and I have spent this week tag teaming all our parenting. He is with Kali in the mornings and I in the afternoons and I’m with Nora in the mornings and Jason with her in the afternoons. I am glad to have focused time with both our daughters, but I miss having time all together as a family and being able to process more of this with Jason. I feel like we make a good team, but we enjoy being a team in the same geographic location. Kali is on the mend though and hopefully will soon be able to come see her sister again. Her cold has made us all more cautious when in the NICU and so Jason and I have been wearing masks with holding Nora – unpleasant but it is not worth the risk of her catching something right now.

Jason and I continue to ride the waves of this journey. I’m grateful we are journeying together in this. Jason, so far, has been much more of the steady one from day to day. This past week has provided some relief for me as I’ve had more breaks from the NICU environment. I also got my running shoes on for the first time since going on bed rest and have gotten in two invigorating walks in the cool November air. That, along with conversations with friends, family and others, has been healing for me. I have a track record of not being so gentle with myself, and have many reminding me that I don’t need to like the situation in which we are finding ourselves and that it is okay and quite normal to be struggling to feel the same connection with Nora that I did with Kali at this stage. I’m grateful for all of you surrounding us, supporting us, loving us and giving us a much needed different perspective from time to time.

Well, it is 1pm so it is time to head back and let Jason get ready for the afternoon shift. Blessings to each of you. Hopefully the next time one of us writes, we’ll have a clear plan for when our family gets to move back over the mountain. It’s hard to imagine that day, but we are all looking forward to it so much. Love, Janelle