Saturday, May 1, 2010

A Mixed Bag

Late yesterday started a series of phone updates that grew progressively worse. By the time we went to bed we were both incredibly tense and eager for morning so we could talk with her doctor.

We arrived at the hospital just as they were rounding on our Natters and they were very patient in updating us. Natalie has been on the vent long enough that it is causing an inflammatory process in her lungs. As the doctor explained, it is not a good thing, but it is an expected development at this point. He said it is the usual course of events that baby is born, enjoys a "honeymoon period" then encounters difficulty. That difficulty subsides, there are several days of stability and then another set of difficulties. We are currently facing her second set of expected difficulties. The good news is that the doctors feel confident they know what is going on and they know how to treat it.

Today and tomorrow she will be weaning off old meds and starting new ones. They told us to expect a rocky week and we are bracing ourselves but know that Natalie is strong and her doctors are wise.

One thing that has been hard for us is to remember that each individual update on Natalie is only a small part of a big overall picture. It is so hard to not let one bad blood gas take your imagination away from you and drive you crazy with worry. I suppose this is something we will have to work on as we adjust to life in the NICU (Although if anyone has magic advice on how to not worry about your child when she is sick I would be glad to hear it. Honestly I don't think there is a way to turn this anxiety off).

Now for the happier events of the day....

She had a WONDERFUL nurse today and she spent a lot of time talking with us today and offering her perspective. I was able to change her diaper for the very first time (Steve has already changed her twice). I've been changing diapers since I was 12 years old yet suddenly I was intimidated by the idea. She was annoyed and made faces at me but overall it was a success.

They are easing up on her sedatives as they prepare to wean her back to the conventional vent. She opened her eyes and made several contemplative poses with her hand on her chin. She is already an uncommonly beautiful baby and these little expressions are enough to melt a parent's heart.

The other excitement is that after she is off the dopamine they will start considering her for feedings. This absolutely left me in tears. It feels like a major step forward to me for her to be growing on mommy milk and not TPN (IV nutrients). Pumping has taken on a new satisfaction knowing that soon she will benefit from it.

As for me, I am working my way toward being helpful and not needing help. This is more of a challenge than I anticipated. Today I managed to stay upright most of the day and ate 3 actual meals. These are big accomplishments in my world right now.

My mother leaves tomorrow and she will be sorely missed by all of us. She has stayed here since Natalie's birth and we have grown used to her around the clock help. There are times when a girl really needs her mom and I am grateful mine was able to spend this time with me.

Truly we would have been lost without our families during this pregnancy and newborn period. Steve's family graciously made room in their schedules to watch Annie during the day and spare us the ordeal of finding last minute daycare. She has loved the extra time with some of her favorite people.

I am being told that I need to go "swuggle" with Anneliese so I guess this is goodnight. Thank you as always for your support of our sweet girl.


  1. Hang in there Sweetie. Lots and lots of people are praying for Natalie and for you. The road ahead isn't going to be pretty for a while but in the long run, I am confident that Natalie will be just fine. Enjoy your "swuggles"!

    Hugs and Love,

  2. I can echo Donna. You are constantly in my thoughts and prayers.. Yes, it may be awhile before you can be calm and not have every nerve on edge...but you have a big God taking care of Natalie and your entire family. When it gets tough, don't forget to breathe deeply and pray.

  3. JT, hang in there girlie. I'm in such awe at how you, Steve, and Annie are just hanging in there together and staying strong together. God has really put so many things in place for your little miracle to be there in your life.... You guys are in my prayers.