Tuesday, June 15, 2010

Tuesday Morning

Natalie had another day at 100% O2 but was only saturating in the 80's. The neonatologist we had been working with is out of town for 5 days so last night we sat down with her replacement.

It was a sobering conversation. People have been tip toeing around us in the last week or so and this doctor was pretty frank. Natalie has reached a critical point and she may be showing us that her lungs no longer have what it takes. This is so hard to write and really I know I am still in shock. We are so confused and angry with the direction things have taken. There are still no answers as to why she went from ready to extubate all the way to life threatening O2 requirements.

During the meeting we discussed using the oscillator. She wanted to get her secretions under control before attempting the vent change as frequent suctioning makes it difficult to keep the lungs open on the oscillator.

After the meeting I went to Natalie's bedside. It was shift change, when parents are not allowed in the NICU for one hour, but Nattie had her eyes wide open and I was not going to miss that time with her for a NICU policy. She looked tired but comfortable. I put my face as close as I could and she focused on me. It was such a tender thing to meet her eyes and talk to her after sitting through such a draining conversation with the doctor.

It was hard to leave but with had Anneliese with us and she needed to get to bed.

We called around midnight for an update and it seemed Natalie had made some decisions for the medical team. They were having trouble keeping her O2 sats up and it was time for a vent change despite her high levels of secretions. They decided to try the jet vent as suctioning works a little differently and it may be better for her secretions. The trial on the jet did not go well and Natalie was not handling the change. They then brought out the oscillator around 3:30AM. She handled this change much better.

I just got off the phone with the doctor and she had tweaked some of the vent settings this morning. Natalie seemed to respond well to the changes and they were able to wean her O2 down to 90%. The hope is that they can continue to wean her down. If not they will bring cardiology in for another consult to check for pulmonary hypertension. The doctor was very clear last night that a return of the PPH would be a very poor sign.

We are at a loss. Last night I brought Annie into bed with us because I needed to hold one of my children to get through the night. I am trying to stay calm but fear is overpowering right now.

I am going to add some pictures as a reminder of what we are fighting for. These are in no particular order but they are all from this week.


  1. We are praying for your family and continue to do so. Our son spent almost a year in the hospital. It was such a difficult time.

    I am not sure if you are aware of these organizations but there are two that might help you get free professional photos of your child and family. One is

    The other is The Littlest Hero's Project

    I hope that one of these groups will help you in your journey. Terri and family

  2. Jennifer, I don't know what to say other than we love you. I hope the Oscillator is a turn for her.

    Christopher and Bethany

  3. praying for natalie and you all. we love you guys.

  4. Still praying for Natalie! Hopefully the oscillator is what she needs to let her get some rest and get strong again! Did they find/treat another infection?

  5. I pray that the oscillator is the answer. My heart is breaking for you, Steve, Annie and Natalie.

  6. Jennifer, my heart is breaking for you and your family. I will pray that the oscillator is what she needs. We love you all.

  7. JT - I've been praying so hard for your family. I know God is guiding you. I hope you never doubt that no matter what! He will lift you at the end of this terrible road. I will continue my prayers for healing little Natalie, and you and Steve. ~ Karin

  8. Jennifer, I will not give up on Natalie. She is a strong girl. Lots of love coming your way!

    Brandy (pprom.wordpress.com)

  9. My heart goes out to you and your family. JT, you are constantly in our thoughts and prayers.


  10. On this day, God wants you to know...
    ... that God is there in the midst of the chaos. When everything in life turns upside down, remember that you are in the hands of the Creator. Look to God, and you'll always know which way is up...