First day in the NICU

I’m sitting here in the NICU with Jason rocking Nora by my side. She seems to be very happy in his arms and has been sleeping contentedly ever since her Aunt Sue was here to hold and interact with her. We have been spending a lot more time by her side in the last 24 hours since she has not needed as many tests, pokes and prods and for that reason and maybe others she is much more content and enjoys being held and cuddled. We are enjoying hearing her cry less and seeing her interact a bit more with her surroundings in her awake/alert times.

We hope that we are striking a balance between overloading you with information and updates and not leaving you in limbo for too long. Now that we have started sending these updates to a broad list, we don’t want to drop people at our discretion. So, that being said, PLEASE let us know if you would rather not continue receiving our rather frequent and often lengthy updates. We promise to not be offended at all. You can also just not tell us and delete them if that feels more comfortable!!

Last evening I ended my evening reading an update my dad wrote about Nora and then watching a little video that Aunt Anna Benner created after visiting and taking pictures and some video footage. It doesn’t take much these days anyway to bring the tears but they came afresh and in abundance. But they weren’t all sad tears this time. They were tears of amazement at how much love is being shown to our family during this time. And how clearly this little girl has already made her mark on this earth – as one friend shared in an email, there is no doubt that little Nora “will not die an unlived life.”

If any of you would like to see pictures of Nora Lynne or the little video, I’m including three links below.

http://bennerfam.ning.com/

http://www.youtube.com/watch?v=NH9TlZeoNIg

http://picasaweb.google.com/hesemyers

I’m also including the two poems written by my Dad:

“The first was written on September 23^rd after I finished reading ‘The No. 1 Ladies Detective Agency’ by Alexander McCall Smith. This was a passage from the book that made me think of Janelle and Drimpy (nickname given to Nora by her big sister Kali early in Janelle’s pregnancy): ‘She was crying; for her own child, too – remembering the minute hand that had grasped her own, so briefly, while it tried to hold on to a strange world that was slipping away so quickly.’

Our Drimpy

So small
And staying smaller
Than she should be

Our love
Growing
And wondering

Will it be
A hello
And a goodbye

Will we have time
To nurture
And cherish

I pray for the grace
To value her life
Whether

Imperfect or
Whole

I love you
Squirmy
Drimpy
Grandpa

And on October 14:

Drimpy, Who Are You?

Drimpy, I wonder
Do I know you
So many details
Fingers and toes
Hiccoughs

Pictures galore
Yet, who are you
So small
A person I believe
But what personality

Will you enjoy life
Even if small
Will you laugh
And cry

We want to get to know you
Please, give us a chance
Grandpa”

In the last 24 hours, Jason and I have felt glimmers of hopefulness. We sometimes feel fearful of those feelings, worried that it is the “calm before the storm” or that if we celebrate the little successes we will have farther to fall during the hard times that are yet to come. However, I’ve decided that this is where having hope comes in and believing in this little girl, who has already shown us that she is not going to give up very easily. She has a bit of a reputation in the NICU for not enjoying being messed with and also for having the strongest grip of any baby around (that she received when they were trying to straighten her little hand to get an IV in…).

For those that want a quick medical update, I’ll try to be concise. As of this morning we still have no blood work results for which we are waiting anxiously. And we really have no more clear answers on what caused many of the things that Jason mentioned in his email. However, none of those things seem to be causing her distress at this point. She is still receiving some oxygen to keep her blood oxygenation levels up, but they are hopeful that this won’t be necessary over the long run. Yesterday she had a central IV placed so that they do not have to continue to replace her IV as her little veins were only standing an IV for about 14 hours. We were happy about this, as it means a less invasive needle in her arm, less sticks and more mobility for her hands which she likes. It also makes holding her easier! Her bilirubin level had gone up a bit yesterday and so they decided to start photo therapy which just means that she lays under bright lights with a little mask over her eyes. However, some jaundice is really common in babies and her levels were not dangerously high at all (Kali’s were much higher after birth), so they are still letting us hold her out from the lights as much as we want. The level was down some this morning so likely she won’t have to continue it after today.

So here are a few of the good things that have made us feel really hopeful, and can’t help but make us feel pretty attached to this little girl. Today she has latched on several times and gotten just a bit of her nourishment straight from me! While pumping and feeding her breastmilk through her tube is satisfactory for now, we are so happy to see her doing the sucking, rooting actions more consistently. AND she has turned the corner and is gaining a little weight. It is common for newborns to drop weight over the first few days before they level off and start to move back up. We are happy to see her doing this early on and as they increase the amount of milk she gets we hope that continues and grows exponentially! And last, but not least, we’ve had some really special content awake times where she looks at us and listens and engages with us. While I know that babies don’t really smile at this age when they feel happy, she has at least gifted us with some good and adorable smile reflexes and I’m sure she won’t mind if we attach some meaning to them for her!

Well, she is starting to grunt in Jason’s arms and it is getting close to another feeding time for her. I better get back to the work of mothering here and finish this update up for now. I know that I’m getting to the bottom of the third page and I feel like I’ve hardly started. Let me end by sharing a poem that Jason wrote this morning – a poem written to prepare for a new day and a poem written in hope for the future:

Watching your little
bones fill in with
flesh is like watching

A butterfly on a
twig, fresh from the
cocoon fill its
wings with blood, bright
patterns unfurling in the
sun. The difference is

You are my butterfly, and
I could watch
you
all
day
long.

Jason laughed when I wanted to add the phrase at the end, “if only I could keep my eyes open.” We are tired but thankful for the wonderful care we are receiving from nurses and doctors here at UVA and the wonderful emails that are flooding in to make us feel connected to our community even when we are physically absent.

As you remember us in the coming days, the big transition to come soon is that we transition to a home in the community tonight and will begin the commute to and from the hospital. Kali will be joining us in Charlottesville tomorrow evening. We are very much looking forward to having her with us, even though it will make our days more logistically complicated. Jason and I have both felt a bit like we are operating in two families of three (our “Kali, Jason, Janelle” family and our “Nora, Jason, Janelle” family). We are eager to have time now to start figuring out our “Nora, Kali, Jason, Janelle” family. We are so grateful that she has had a special week with her Aunt Karen and Aunt Sue and then with my folks in Pennsylvania. She still won’t admit to missing me very much!!

Blessings to each of you, Janelle