Sunday, June 6, 2010

Camping Out

On Friday Natalie's nurse devised a new way of protecting her from the stimulation of the NICU-she created a little crib tent for her.

Ms. Natters still does not tolerate stimulation but does not need to be in the fancy isolette anymore. This simple sheet goes a long way in blocking out light and noise so she can rest comfortably.

So Thursday was the very bad day. Friday was quite a bit better and they restarted her feedings in the evening. She had been on a mix of one part breast milk, two parts high calorie formula and 4 packs of human milk fortifier. When they resumed feedings they reduced her mixture to straight breast milk plus the four packs of fortifier. I am not sure if/when they will add the formula again.

Saturday I called for the morning update and her O2 setting was only in the 50's. The fifties!!!!! She had been resting and had much better color. We went in for an afternoon visit and the timing was off for me to be able to hold her. Instead I gazed at her sweet face and delighted in watching her sat in the 90's while her O2 was repeatedly turned down. She showed off for Mommy and got all the way down to 48%.

It's funny but when we get really good days like this I have a whole other kind of anxiety. I am so afraid to make the next call and have the good news taken away. Last Wednesday she was down in the 40's and that was immediately followed by an awful day. That is one of the most frustrating parts of this NICU journey-you quickly learn not to get too comfortable on the good days. This is when it really helps to live one day (or hour) at a time. I have been really focusing on the news we have now and trying like mad to not anticipate the future. This is clearly a work in progress and not something I have mastered.

When I called for the bedtime report the nurse said "Oh, you will be sleeping well tonight!" Natalie was still in the low 50's and resting well. Everyone has been commenting that she looks like she is feeling better. We did have a much more relaxing evening than usual and celebrated Natalie's good day.

While her O2 settings have been decreasing her blood gases have still not been in a range that would allow weaning the vent settings. This is crucial as her ventilation needs are very high right now-in a range that causes more lung damage rather than allowing healthy tissue to grow. I have been anxiously watching her CO2 levels and hoping for them to start decreasing.

I called this morning and was very nervous. I have this habit now of squeezing one of Annie's stuffed animals when I call. It's silly but helps brace me for whatever I will hear. This morning is our third morning in a row of good news. Her O2 settings were in the 50-70's overnight (she needs to get "bumped up" when she has her cares done and it takes her time to settle back down). She also finally had a blood gas with a pretty low CO2. They have yet to round on her but I think they will finally be able to make the first step down on her settings.

The nurse said they had just retaped her tube and she was wide awake. They had given her some drops of sugar water for the procedure and her little mouth was going. It is so hard for me to hear she is awake when I am not there but the nurse was sweet and held the phone to her ear so I could tell her good morning. She laughed and said Nattie was looking left to right trying to figure out where I was.

I am beyond grateful for these good reports. Natalie has a long way to go but how incredible to see things moving in the right direction after such a long stretch of backsliding.

Thank you so much for all the prayers being sent up for Natalie. I can not tell you the comfort it brings us. A friend of a friend even prayed for Natalie at the Wailing Wall. We have been blessed to be supported by so many people around the country. It goes a long way to holding us up on a very difficult path. Again, my deepest gratitude.

Now I need to spend some good time with Annie and Steve. She informed me this morning that I need to find a different prince to marry, because she is going to marry Daddy now. Where will I ever find a price as good as Steve?


  1. All of us here in the Highland Lab are glued to your posting, and we celebrate with you when you have a good day. We are praying for Natalie, Steve, Annie and you. What an incredible family you are! Julie O.

  2. I am still keeping the prayers coming. The good days are the best and I am praying you have lots more all together. Praying that Natalie is done with her turns and the only turning she has now is the vent down and the tube out!

  3. Annie is so cute! She'll find another prince for you, I'm sure. =)

    Glad to hear so much good news for Natalie. It really is hard not to get your hopes up when things are going well. But when you do, those bad days hit so much harder!

    Hoping for lowered vent settings all around! You'd better believe there's going to be a major celebration when our kids are free of the vent and we can snuggle in any position for as long as we want!!!

  4. I am so glad to hear Natalie is doing better. Every time I click on your blog I find myself almost holding my breath until I see how she is doing, LOL Thank you God that she is doing better. I will continue to pray for her and your family. :)

  5. JT - so glad to hear about Natatlie's good news. I keep thinking about how you are all doing. I'm praying that she will be free of the vent soon. Stay strong!


  6. Im so thankful to hear of Natalies good news. Shes a fighter, and so are you.

    Your last line of Annie and Steve has made me cry. that is just so sweet. little girls are amazing. and you have 2 precious ones!

    xoxoxox and lots of prayers.