Thursday, May 6, 2010


Let's last update was Monday night and that now seems like weeks ago.

Tuesday I went in to visit Natalie and she was continuing to do well with her oxygen levels. I has a very nice talk with our favorite doctor (Yesef) and he was very pleased with her progress. He swung his arms around when he saw her oxygen setting was only at 22% and said "21% is room air!!!"

Wednesday when I called for an update she was up to 60% because she was agitated from her cares (diaper change, temp check etc). I was on edge from her needing a higher setting and was anxious to see her that night.

I should say here that the oscillating ventilator takes about 700 breaths a minute in order to keep her lungs gently inflated. It is an incredible force of a machine and fills the room with its presence. The sound is something like a loud air gun that fires nonstop.

We arrived in the evening to visit and as we rounded the corner to her pod it was obvious that something was different-there was quiet. When the machine that has been sustaining your daughter's life for the past week is silent it will literally stop you in your tracks. Steve went to her isolette but I was frozen. Slowly I realized that all was well-she had been moved back to a conventional vent and the hulk of oscillator had been left at her side as only a precaution. Our little girl had made a huge step in the right direction!!!!

She is still breathing much faster than they would like (around 70-90 breaths/minute and they want to see 40-60/min) but they accept that is just the way Natalie will be for now. Her respiratory rate is a little lower than it was before she was on the oscillator so it does seem to be headed in the right direction. Her blood gases have been mostly good since going back on the conventional vent. Today they were not so great and I am waiting to here if tweaking the vent settings helped. Again I am trying to not get ahead of myself over small set backs.

Eating continues to be a struggle. She is now sloughing off the lining of her stomach so she is taking Pepcid to lower her stomach acidity and allow healing. We are very much hoping that her stomach learns how to move food through in the near future. In the meantime they have placed a tube that runs from her nose down into her small intestine to bypass her stomach and get some milk in her. They just started that this afternoon so I am hopeful there are many messy diapers in her near future.

We were recently thrown another curve ball amidst all her "normal" issues. Thursday morning at 3:30 am the phone rang. Whenever the phone rings I stop breathing. When the caller ID says "University of Rochester" my heart stops. Steve answered and I tried to keep myself calm. Natalie's right foot was discolored and swollen. They were concerned it was a blood clot and indicated that her foot might be at risk if they could not resolve it quickly. This left us with many night hours filled with fear as we waited to here how things progressed. To fast forward a bit, removing all lines from her leg and elevating it has improved her foot considerably and they are following it closely. She was evaluated by a vascular surgeon and he feels comfortable waiting to see if it heals on its own. The risks of intervention do not outweigh the benefits at this time.

I had a very nice afternoon with Natalie today and held her legs for a bit (every little touch means the world to me right now). She is a very feisty little baby and I am so grateful to see her fighting spirit.

I am hopeful that the new feeding technique will work and she will heal faster with better nutrition. This continues to be an incredible mix of ups and downs that we can't quite get used to. There is no magic method for coping-one former NICU mother told me it is a matter of showing up and putting one foot in front of the other.

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