26 days old...

(This is as of about 11:15am today) Averi has hematoma in her brain, not actively bleeding and not worse since yesterday. It is on the part of brain that controls motor, but she is still moving/responding. She is too critical to do MRI at this point, though. They have put her on antiseizure meds, and she is being weaned off of Milrinone (a med that was to help with blood flow to extremeties.) BP, HR, sats are good, blood gases have been good.

The Gaynors had a nice time yesterday spending time with their older kids.

Thanks for your prayers! Please continue.....

...and here's a picture of the ECMO machine being wheeled away:

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.

Updates on Decannulation...

11:11am--They came out and told us she is not doing well and then came and said she was doing a little better.

11:18am--Surgeon just came out. She made it through, but she is just ok. Sats are a little low and BP is low.

12:40pm--They are trying to find the perfect position for the ET tube. They changed her head position and such. Things still seem rocky though, but maybe it is just her getting stable again.

I don't want anyone to panic, as it can take some time after getting off of ECMO to figure out what the baby is "liking," but by the same token, I don't want to diminish what is going on either. Coming off of ECMO was a huge step, but Averi is still in critical condition. As Teresa said, "PRAY, PRAY, PRAY!"

A setback...

OK, prayer warriors... one minute after I posted that last update, Teresa said that Averi's blood pressure was way low and that her pulmonary pressures are high. I don't know why the sudden change. We know she doesn't like to be messed with...

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!

♥ ♥ ♥ Update ♥ ♥ ♥ (19 days old, day 8 of ECMO)

Averi seemed to stabilize yesterday. They are still trying to get some fluid off, but are only able to get 10mL/hr using the dialysis. She seems to be tolerating that more than she was the 20mL/hr setting. Teresa doesn't think she looks that swollen compared to some other ECMO babies she's seen. Most of the swelling is from her liver.

They did an x-ray this morning, and her right lung has opened up a lot more. Praise God!

Another concern that Teresa has had is Averi's eyes. She said that they were open pretty much all day yesterday, but not blinking or anything. They asked them to tape them shut, and they put this gel patch on her last night, and her eyes are almost all the way closed today. So that's better, too.

I asked Teresa for very specific prayer requests. I really feel that we need to pray very specifically! This is what she said:

• Stable blood pressure as they remove fluid. We know from previous experience that Averi doesn't tolerate things when her fluid levels get too low too fast. Pray for wisdom for the doctors and nurses as they make decisions concerning fluid.

• Expansion of lungs. The right lung has expanded quite a bit, but so far the left lung has not. Pray for that little lung to be full of air.

Teresa & Kevin have decided to take things one day at a time and celebrate each day that they have with their daughter. Keep them and their other kids in your prayers, too. I know that they appreciate each and every one of you!

Teresa just texted. The roller coaster continues... Averi's blood pressure has dropped again, and the pulses in her extremities were weak, so she is back on the dopamine and they are pushing fluids. The doctors told them that this might happen immediately following the connection of the dialysis, but of course Averi didn't read the play book, and she decided that a few hours later was better!

Just before her BP dropped, they had reached the "fluid negative" goal. So the dialysis was working, but for some reason Averi isn't tolerating it.

Now they are looking at the ECMO machine itself. (Both of her nurses, the doctor, and the ECMO perfusionist have been in the room trying to see if the ECMO machine itself is causing the flow problem.)

Teresa is concerned and would ask people to pray that Averi is not in pain. She said that Averi has had an eye open this entire time. Also, WISDOM for the doctors and all involved in making decisions. Thanks, everyone!

Averi did not have a quiet night...After all the progress she made yesterday, she stopped peeing. She is now on a steady drip of lasix instead of separate doses. Her blood pressure fell again, so she is back on dopamine. The good news is that she is back down to 70% oxygen! She was at 100% yesterday. Keep praying for her to pee and that we get to that "fluid negative" place. Her belly has a lot of fluid in it within the tissues, and they are keeping a close eye on it.

Even being as sedated as she is, Averi still has to keep an eye on everything that's going on!

Another update...

Averi is off of dopamine and sustaining a good blood pressure on her own. They have weaned her on the oxygen a litle more, and she is satting at 100. They are going to do an ultrasound to check for pulmonary hypertension as well as an x-ray sometime in the near future. The doctor said she is moving in the right direction, and the nurse said she has had a great day! Praise God!

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!.