Friday, July 9, 2010

Friday Night Update

Last night was a whirlwind. Once the decision was made to operate Natalie's little room had to be turned into an OR. There is barely enough space for her crib, oscillator and iNO tank. Luckily her room is adjoined to another room by a glass partition that was opened up after much discussion and maneuvering of equipment. The OR staff had to be called in from home. I give them a lot of credit-they are only allowed 30 minutes to make it to the hospital. Everyone was very kind and supportive. As a side note, one of the doctors is married to someone who was in the OR when Natalie was born. I am still being introduced to people who shared in her birth and were amazed by how well she did.

We spent the night in one of the family rooms. I have to say that this NICU experience has given me an appreciation for the smallest things. Last night is the first night I slept under the same roof as Natalie since I was discharged. What a comforting feeling to know she was just down the hall and I could check her with my own eyes at any time. These little things are so big when you can not take them for granted.

This morning the surgeon seemed pleased. The redness on her belly had dissipated and her vitals were stable. Her white count had gone down a little and there were no more bands. The platelet count was comparable to yesterday's numbers. Her blood gases were some of the best she's had. They had gone down on one of the vent settings (the power, which correlates to CO2 levels) but it looks like they may have overshot the mark again. Her evening CO2 was up significantly from the afternoon. I am now trying to not read into this but it is so hard to not get wrapped up in each little detail.

We are now in a place of waiting. The surgeon says it will be a long process. So far her drainage has stopped. That is a good sign. She has a tube in her stomach for suction and the fluid amount and quality is improving. Her O2 requirements remain good. Today she was at a whopping 30% most of the day. How I wish we could sit back and delight in her respiratory progress without this new fear. Her doctor said today that if it were not for her belly issues she would have gone down on her MAP. SO frustrating to lose that opportunity.

It seems the plan is to constantly monitor her clinical signs and take daily abdominal X-rays. The surgeon may replace the drainage tubes with smaller ones next week but it all depends on how she is doing.

She has needed two boluses of fluid to improve her perfusion but her blood pressure remains stable. She is also on a great deal of pain meds to keep her comfortable. Luckily she has a urinary catheter so she does not have to be manipulated for diaper changes.

Everyone is still very surprised that Natalie developed NEC at such an advanced gestational age. It happens, but it is not common.

Interestingly enough, our NICU seems to be encountering an outbreak of NEC cases. They went from a long stretch without any and have now had 6 in a short period of time. They are working with the infectious disease department to try to find a common link. So far there has not been a common factor among the babies. I asked and Natalie is the 4th or 5th case among the 6. While they are trying to determine what is going on all the NEC babies are on "contact precautions" and the nurses have to gown up and wear gloves when entering her room. She will not be released from this until she has a clear stool culture. That should be interesting as we have no idea when she might stool again.

I had felt pretty optimistic today. People kept coming up to me to say they were sorry but really I felt confident for no reason I could pinpoint. Now I am just feeling tired. The conversations and decisions last night are still haunting my mind. I so wish I could turn off my head and have about 20 hours of dreamless sleep. It is scary to have one more thing to watch, one more thing to be afraid of. I am very grateful to Dr. Lee for his quick response last night and for all the people who came together to make her surgery possible. I hate to think of what today would have been had they waited. I am also grateful that she tolerated the surgery so well and that she has remained stable. Many prayers that she remains that way and her belly can do all the healing it needs.


  1. I am praying for all of you constantly. I wish there was more that I could do.
    Love and Prayers,

  2. I am constantly in awe of that baby! She is so strong! Like her parents, I guess. Still what a champ. I want to give her the moon tied with a big bow for being so brave!

  3. Oh, Jenn. Sorry not to have been on yesterday. Ironically, yesterday was the type of day that I thought, "If I were a drinking woman, I'd be plastered right about now." Sounds like you and I could have shared a few rounds!

    I'm so sorry about the NEC. Having been through the scare, exploratory surgery, the resulting ostomy, wait for output, wait for feeds and finally the reanastomosis, I'm hoping and praying that Natalie can avoid that route. Good signs on the counts and drainage. Give her an extra kiss from Timmy. Tell her he's already been through it, she doesn't need to.

    Love and hugs to all, Wendy

  4. There was a big change in our prom fight this week. I am going to tell our little angel baby Leah to ask God to be extra mindful of Natalie. I know she has a direct line to Him these days. I will keep you and your family in my prayers. Again, thank you for sharing your courage and hope so openly. Your blog helped me through many days over the last few weeks.

  5. Prayers for little Natalie. I like the new look of the blog by the way.

  6. JT - praying for little NAt. I'm so glad her surgery went well. Hoping for a good recovery from it!