Sunday, September 26, 2010


Natalie is still requiring a great deal of oxygen support. Her FiO2 dropped into the 60's Friday but it only lasted 8 hours. She has mostly been right around 86-90%. They started steroids Saturday night in an effort to bring her levels down but after 2 doses we have not seen a change. She will only get 6 doses total unless it starts to really make an impact.

She has been able to resume Lasix and her chest films are improving, so the O2 issue is probably not related to wet lungs. I have received several messages regarding different diuretics and I want to thank everyone who offered advice. Natalie has been tried on some more gentle diuretics but always ends up back with Lasix. On the upside, for a month or so now she has been getting away with half the dose she used to require. Hopefully they can get her on some nicer diuretics soon, though.

The good news is that she is IV free. Her cultures did not grow anything interesting, so the antibiotics were discontinued. She came off the fentanyl last night as well. Restarting feeds has gone very smoothly and she is blessing us with many dirty diapers. Overall she looks very comfortable and is nice and pink.

Her lungs are ventilating with finesse again and Natters has been having beautiful blood gases. Her vent settings have come down considerably. She is back on pressure control/pressure support, which makes us very happy. Her PEEP is down to 4 (where is was pre-surgery) and her total pressure is only 2 higher than it had been. Her rate is 40 and her pressure support is 16. I realize most people do not necessarily follow the numbers, but I like to keep track for future reference and also share with those that get excited about PEEPs.

I will not lie-this backslide has been very difficult. I was prepared for a few rough days but not a week of crazy oxygen requirements. I had reached some important milestones myself recently. I no longer woke up in the morning needing to get sick to my stomach, I rarely had fits of panic before calling the NICU and I could actually enter Natalie's room without looking at her O2 setting before looking at her. All that is gone and I feel just as I did when she was at her worst. I understand we are not in the same place we were then, but my heart does not seem to see the difference.

At the same time, Annie is living the life of a nearly 3 year old and I am trying to keep up with her. It is such a crazy balancing act when one child is healthy and one is medically fragile. Natalie needs so much more than a typical baby, but the needs of a toddler are the same regardless of her sibling's health status. I ache for the worries I used to have about bringing another baby into the house and how she would respond. This is not at all how someone imagines expanding their family.

Annie had her first dance class on Saturday. Before we left I learned that Natalie was requiring 100% O2 and was agitated. So then what? Where do you go? I swallowed my fear, dressed Annie in her leotard and tights and went to make memories with her. Then off to the hospital with the intention of sitting next to Natalie until they gave in and tried the steroids (it took until 10PM). I understand that in many ways I am blessed to have these problems because it means my daughters are both still here with me. That perspective does not always keep the stress at bay and it does not always keep my patience in check. I wish I could have a do-over of Annie's past year. I wish there were 10 extra hours in each day so I felt I was at least partially meeting the needs of my children.

Natalie should get her first trach change tomorrow or Tuesday. The first change is a delicate one so ENT will be coming in to perform it. Changes after that will be made by nurses and eventually us. After that Natty will be able to be held and placed in more positions. I am hoping that will help her mobilize secretions and possibly improve her respiratory status. I am trying with all I have to keep putting one foot in front of the other and get through this. Natalie is an incredible baby and I know she has it in her to turn this around and amaze us all over again.

Anneliese embarking on a new dancing adventure


  1. I have been reading your posts and really feeling for you and your family. We are in a similar position and reading your stresses makes me stress too but I look forward to the day where both of our girls are comfortable on their trachs.

    Take care, we are praying for Natalie.
    xo Amanda

  2. Jen- I think you are an amazing mother!
    Amy Panella

  3. What a woman you are! And a wonderful mother. Please don't guilt yourself on time spent with your girls. You're doing the best you can do and that's all anyone, yourself included, can ask of you.

    I'm so glad you keep posting. I know how sleep-deprived you are, having been there and still being there myself, and I'm glad you find the time to keep your friends and family informed and keep the journal going for Natalie. One day she is going to be absolutely amazed by this blog. By all that she went through and all that you went through for her.

    I meant to write a while ago that I felt the same thing when Timmy was trached - so scared that I would see only his trach and that I would be sick to my stomach and not be able to look at him. So amazing that I barely noticed it then and hardly see it when I look at him even now. With such a sweet face above it, especially one that you've longed to see for months, you hardly even noticed it's there.

    I hope you love your ENT like we love ours. Everyone we mention his name to tells us he's the best. Such a comfort to have something so vital to our child's existence in his hands. My only advice (if I may) is to watch the nurses as much as you can when they suction and assist as much as you can during trach changes and changing the ties. That really helped cement things for me during the late night severe sleep-deprivation stage when they blazed through teaching trach care (at our request) and turned Timmy's trach care over to us. You will be a natural at it once you get the chance.

    I love the pictures of Annie in her dance-wear. We just started Trevy in ballet. Hmmm...well, at least the rest of the class can say they are better at it than someone else! =)

    Hugs, hugs, hugs and lots of prayers!

  4. Happy BIrthday Annie ( a little early). It's all about the PEEPs. She will get there! Prayers will of course continue.