Weight going the wrong direction!

It’s a quiet, cloudy afternoon here in Keezletown. Quiet because Kali and Jason are at the school they volunteer at Tuesday afternoons and cloudy because it sounds like some thunderstorms are on their way to us later today.

Nora is sitting on my lap watching me type and I imagine this will not last too terribly long. She has been content today, even with a morning nap disrupted by our scheduled doctor’s appointment. Our good friend Kristin came down the hill with her baby daughter Phoebe this morning to play with Kali so that Jason and I could go alone with Nora to the appointment. We both felt the need to focus on our time with Dr. Ashton and to also be able to express how we felt depending on what the scales showed. It was a wise decision.

Neither Jason nor I knew what to expect but we were both pretty sure there had been no monumental growth in the past two weeks. Nora has been consistently eating very little from the bottle on the days that I’m at work and this has been frustrating and discouraging. While we think she attempts to do some catching up on the off days with me, we are pretty sure she is not able to make up the difference.

She weighed 6lb 6oz today, down 1 ounce from her weight about 2.5 weeks ago. While this is not a lot down, it is definitely moving in the wrong direction and worrisome to us and her pediatrician. While it may be there is something going on that is completely out of our control and that no amount of breastmilk will solve, there are a number of things we are to try in the coming days/weeks. Jason and I aren’t yet convinced that it isn’t a matter of Nora failing to consume enough, so we are open to experimenting with the feeding program. We will begin fortifying the breastmilk Jason feeds her in bottles. Jason will also be trying alternative methods of feeding – cup, spoon, syringe. We are also to start weighing her before and after feedings with me to try to assess what she is taking in (this is something not widely done anymore and is probably not best for already super anxious moms, but we’ll see if it gives us any information that is helpful). We go back again in 2 weeks for her next RSV shot and immunization and will see where we stand then. We are also starting her on a very small dose of Zantac to help with reflux.

In the meantime we have an appointment next Tuesday in Charlottesville – a follow-up with the neonatologists and then with the neurosurgeons/plastic surgeon about the possible/probable surgery Nora will need on her skull later this spring or early summer. I hope to connect with the geneticist at UVA yet this week via email to see if we might also be able to connect with him when we are in the area next week. Kali will have a fun day with Kristin and Phoebe in the morning and Aunt Karen and Aunt Sue in the afternoon.

Well, Nora has blown out in her diaper while she sits here so I better take care of that before continuing. That is probably enough of the raw data for you all anyway. Before I end the summary on Nora’s health, I should say that she continues to do new things. She is getting very good at her “tummy time” and is lifting her head and moving it to both sides. She was very happy at the doctor’s today cooing at the butterflies suspended from the ceiling. She is getting easier to do things with (like the fact that I’ve typed a page with TWO hands with her sitting on my lap) and sometimes enjoys carting around in the Snugli baby carrier that we have. Sunday was another warm day here and Kali and I managed to get three loads of laundry hung out and a walk to the mailbox with Nora in tow. Warmer weather is no doubt going to provide some relief for all of us!

The last several weeks have been trying emotionally for Jason and I. Where are we headed? How do we sustain ourselves in the midst of the uncertainty? How can we make this time as positive for Kali as possible, and for ourselves? How do we find beauty in the pain, joy in the sorrow, and hope while experiencing grief and feelings of loss? And how does one get more sleep in order to better do the above?

I do feel like Jason and I have both had times of self-care lately that have been helpful for us. I’m not sure if Jason would frame it that way but he has had several long outdoor work sessions which I know is always rejuvenating for him. I’ve enjoyed a walk, lunch and some phone conversations with friends as well as a massage that was paid for as a gift from another friend. I’ve had chances to air raw feelings with others which is always a start to healing for me and to moving beyond those feelings.

I am still SLOWLY making my way through Traveling Mercies by Anne Lamott. This afternoon I was finishing a chapter in which she reflects on her changing relationship with her mother as she ages, and on the eyes with which her son Sam views his grandmother. While our journeys are very different, I found myself connecting with some of her reflections and helped by seeing someone else sharing the range of their emotions experienced in one’s journeys with family. I’ll end by sharing a few quotes with no commentary and you can get the full story by reading the book and maybe some more of my thoughts connected to them will come in a later update.

For now, Nora is ready for attention and our small group will be joining us for dinner in about an hour. Jason called recently and after a quick stop at the library to look for some more Amelia Bedelia books at Kali’s request they will be on their way home. The wind is picking up and daylight is waning.

Blessings to each of you, Janelle

“Sometimes, holding her soft warm hand, I want to take it and hurl it to the sand beneath the wheels of the oncoming lifeguard’s jeep. But oh, God, the trust with which she keeps holding it out for me to take! Without someone to steady her, she cannot find her balance. And I guess when you take away the resentment and disappointment, it’s that simple. It is what we do in families: we help, because we were helped. Now when I look at the picture taken on the Fourth, my stomach aches with a miserable sort of poignancy because she is so friendly and eager to please. For just this moment I look like I am in love with her and she with me. For this one moment, we are. I am learning very slowly to savor the minutes between us that work, that cut through my life long hunger for a more perfect mother…Who was it that said that forgiveness is giving up all hope of having a different past? The pictures do help sometimes, and I’m gentler with my mother, more understanding. They help by making me sad at how hard we all try and how far short we fall, and the sadness softens me for love. I go around trying to do better by her, trying to be God’s tender hands and eyes…I tell you, families are definitely the training ground for forgiveness. At some point you pardon the people in your family for being stuck together in all their weirdness, and when you can do that, you can learn to pardon anyone. Even yourself, eventually…I keep watching. Sam takes his grandmother’s hand. I feel like sobbing with grief that my mother is old, that she won’t always be around, and with despair at what an erratic daughter I am. But it’s not a big deal to Sam. He just wants to help her find her balance.”
Anne Lamott