Things to be thankful for!

Right now I feel badly when we write too often as I don’t want to inundate you all with emails and I feel badly when I don’t write often as I know many of you are wanting to get updates as often as possible. So I’ll just hope we are striking some kind of happy medium (and I also hope that any of you will free to let me know if you would prefer to not be on this list and receiving these regular updates).

I’m going to put this note in the body of the email to make sure it will be a “quick” one. It is a better day today. For that Jason and I are both very grateful. Here are the things that give us a sense of gratefulness today:

1. Nora has been able to eat all day today, for her regular tube feedings and nursing anytime she is hungry. That makes her and us happy.
2. Nora hasn’t been stuck once by a needle all day today and she has made friends with the blood pressure cuff and stethoscope by now so there have been relatively few things to cause her distress.
3. We gave Nora a bath today so she is no longer salty when I kiss her. Her Gtube site is amazingly healed and stitches will come out later this week before we would go home. The only remains of her heart catherization that we can see from the surface is a Tweety Bird bandaid on her left groin.
4. Kali is here with us and making me laugh more than I have for quite some time. She has walked up all 183 stairs to the 7^th floor twice since she joined us. The first time we had to take a break but today she informed me that we could “cancel” our break since she had a bigger dessert at lunch to give her extra energy!
5. Jason and I both got at least one 4 hour block of sleep last night and at least 7 hours total – also a record. And boy does that make a difference in our ability to absorb all the information coming at us.
6. Mom and Dad Benner are here entertaining Kali, feeding all of us and being so supportive just by their presence.
7. We have found good and inexpensive lodging for all of us at the Ronald McDonald House here (not as homelike as Bill and Dottie’s and no one has offered me backrubs there yet BUT a wonderful second option – and Kali is ready to move there as there is an endless supply of toys and books!)
8. Nora’s stats have been stable almost all day today and she is relatively comfortable now with a new and smaller nasal canula.
9. They have started her on a medication for the pulmonary hypertension (and a number of persons have gotten a kick out of knowing that the particular medication that our 6 month old baby daughter is receiving is none other than Viagra).
10. And finally as the pictures will show, Nora is still showing her desire to interact with the world around her and she hasn’t lost her appetite (for blankets or milk!)

What I am realizing about myself is that I can make it through today and definitely the next hour or two. If I focus on the future right in front of me and take this all in in very small increments, I slowly adjust to this new reality. What I do not yet have the strength to do and don’t know even how helpful it would be at this moment in time is to think about a year or even five years from now.

Another piece of all this that continues to baffle me is the amount of resources that our little 6 lb bundle is utilizing. But maybe that challenge and the ethical dilemmas it poses for me should provide the backbone of a later update. Part of the reason this is more at the surface for me today is that one of our home health companies had a representative come to meet with us today regarding the supplies we will be receiving for tube feeding Nora. Jason, out of curiosity, wanted to know how much the little pump that we’ll use at night costs. Maybe I should not have been surprised, but it will be the most expensive thing we have in our home running close to $5000 (and we’ll be given two of them). Additionally our insurance will be billed over $15 daily for the other supplies, including tubing and bags that are all intended for one time use only. Our attempts at having very little trash to take to the county dump will likely be in vain in the coming months/years… But I realize that the only reason that I have the luxury of even asking the questions about use of resources is because we aren’t having to scramble to think about how we are going to pay for all these things – so that should be number 11 above: we are so grateful for good health insurance!

Well, our little one is starting to stir so I better send this off. Jason is out with his dad for his first outing in which I have been left alone with Nora (okay number 12 above: Janelle’s anxiety level is low enough today to be at the hospital alone). Kali is with Mom Benner practicing drawing zebras.

We will continue to be in touch. No projected date or time for discharge yet but you can be assured you will know when we are going home! Janelle