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.