worst day of my life....warning this is a long one

Honestly, I can't say that I believe that is the last time I will say that. Averi was really rocky coming out of the decannulation yesterday but seemed to stablize around 4pm. Her cardiologist came in after surgery looked at her then listened to her heart and left the room. He never said a word to us. Kevin asked Dr. Pretzlaff what Dr. Van Gundy's thoughts were, and he said the concern is that there was so much pressure on her heart because her lungs were still so hypertensive that it was causing the left side of her heart to be compressed.

A short time later Dr. P came back and said that we were making some head way with her stability but there wasn't much more that they could do with the vent or meds and it was a possibility that her heart could stop. If that happened it would not benefit her to do cpr to bring her back and basically would we sign a DNR. I could not believe that he was asking me this with things being so rocky after surgery for anyone why would she not be worth trying to save during this difficult recovery time. I told him I couldn't answer that and just cried and prayed at Averi's bedside.... and cried and prayed. I was so torn between wanting my baby and feeling like maybe I was being selfish. She was stable and the nurse said we needed to take a break, eat something and talk. We did so and came back.

We walked in and not even 5 minutes later her blood pressure shot up and her heart rate dropped and dropped. The nurse froze and called another nurse, who called the nurse in charge, who called a doctor. He told them to administer some drugs (one that keeps the brain from bleeding)and something else (dont remember what). This doctor just walked in the door for the night shift. The nurse called out and said pupils are fixed and dialated...nonresponsive. She then took the time during this to ask about the DNR if her heart rate dropped again. I told her no! She rolled her eyes and walked away. Something in my heart just blurted out NO!!! The doctor ordered a blood gas and they checked her blood sugar. It was way high. Her blood pressure and heart rate seemed to stablize.

The doctor said it was one of a few things, one he ruled out pretty immediately, the other 2 were brain damage because her brain was not telling the body to produce carbon dioxide anymore (the blood gas showed it was way LOW after being way HIGH) or it was her lungs just deciding to work which triggered the way low CO2 which then caused the lungs to constrict putting way to much pressure on her heart causing the dropped heart rate and high blood pressure. If it was brain damage there was nothing they could do. The nurse that asked about the DNR said again pupils are fixed, dialated and nonresponsive.

We sat there in the room for a while and I decided we needed to be together as a family, so I told Kevin I was gonna go home take a nap wrap gifts back up the car and we were going to spend Christmas as a family at RM House. He was going to stay and update me on ANYTHING that happened.

I got in the car and just began to sob, scream, hit the steering wheel. Then I began to pray, pulled myself together, turned on my worship music, drove and prayed some more.

Kevin then called me and said that the vent change the doctor ordered during the whole ordeal showed a difference in her CO2 and so they ordered another vent change and blood gas. That showed another change in the levels and the doctor was sure it was that her lungs just decided to work. Her blood gases continued to show improvement with each change they made to the vent. Thank you Jesus!!!

I am sure that this is not the last time I will say this but GLORY TO GOD!!!!! I still have my daughter, she is stable for right now. Thank you for all the prayers.... I cannot say this enough. Thank you thank you thank you!!!!!

All of that being said I want to thank all of those who had a hand in providing a special Christmas for Alex, Kylie, and Ian. I came home to a beautiful tree with presents wrapped under it, food in the fridge and pantry, and a clean home. I cannot say what a HUGE blessing this has been. It has been a rough 3 weeks and it is not over yet, but this was a huge relief to me, and made a huge impact in our lives. God Bless you!!! Pictures of Christmas smiles coming soon.

22 Days old (DAY 11 on ECMO)

Here's an update... I may need to clarify some of this later... as I was talking to Teresa, Kevin called her back in because there was an urgent issue he needed to discuss. I have no idea what that is, but you can be praying...

They were about to inject surfacant into her lungs. Pulmonary surfactant is an oily substance (a mixture of lipoprotein molecules) produced by the cells lining the alveoli. All parts of the respiratory system are coated with a thin watery layer. The surfactant coats this layer and reduces the surface tension within the alveoli. This helps keep the alveoli open for gas exchange.

The attending physician in the NICU would like to wean the ECMO tonight in hopes of doing the bridging tomorrow. They would like to see her come off of ECMO this side of 14 days. The doctors in the PICU differ with this decision and would like her to rest more before doing the bridging. Teresa & Kevin's prayer is that the two groups will come together and reach some consensus.

They will be doing an ECHO tomorrow to check on her pulmonary hypertension levels.

Averi's blood pressure is better today. The issue with the right side of the heart that I mentioned the other day is that the hypertension was stressing that side of the heart too much, and they didn't feel that her heart would be strong enough to handle being off of ECMO. That problem seems to have resolved.

Teresa has some concern about the dialysis. The doctors are saying she is still +4 liters from where she should be, (I start envisioning 2 2-liter bottles of soda...) and the nurses don't see how that's possible. We just don't want them to take too much fluid off!

As far as I know, Averi is stable, her lungs are continually expanding, and she is still on the high frequency ventilator with iNO. I didn't get a chance to ask her how the liver is doing. As Teresa said, our hope is NOT in the doctors, the hospital, the medications, or the machines. Our hope and faith is in the Lord, who uses all of the above (or not, if he chooses that!) to accomplish HIS purposes.

As always please pray for the doctors to have wisdom in the decisions being made for Averi... that everything will be done at precisely the right time and in the right order. Pray for Averi's little body to be strong and feisty as she fights! Pray for the entire family. As we head into Christmas, and the family is separated by a few hours, I am sure that their other children are having a really difficult time. Thanks, everyone! I'll let you know if I hear anything else!

This morning...

Kevin and Teresa have been at the hospital all night and are, as you can imagine, exhausted. Teresa mentioned that she is afraid to leave. I have been there! They do have some places they can go to rest that are fairly local, but I totally understand the need to stay. Please pray that Averi gives them a good "super stable" window (preferably one that lasts for a long, long, long time!) in which they can go and get some rest and refreshment.

On a completely different note... This is something that comes from ME, not the Gaynors, but there is a local church that is working to take care of the entire family for Christmas. As you can imagine, with being at the hospital for so many long hours, the holidays are likely the last thing on their minds. In the effort to keep some normalcy in the kids' lives, this group of people is seeking to take care of Christmas for them. If anyone would like to contribute toward Christmas for the Gaynors, please contact Kristin White. They would like to have everything in place by December 19th. Kristin has some ideas of what would be good for each family member, but gift cards they can use for gas, food, etc. would be good choices, too. They live quite a distance from the hospital, so those expenses are adding up. When we were going through this, our church adopted us, too, and I can't tell you how much that meant to me!

Thank you for your continued prayers and concern for this family!.