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.

Out of Surgery!

The surgeries were a success! The surgeon said Doctors said that Averi is more stable now than she was before surgery. As I said before, they put her on ECMO first, and then did the repair. They were able to do a primary repair, which means that they just stitched the hole closed! This is awesome because it means that she won't have to have a later surgery to replace a patch that won't grow with her body. Her lungs were a little beat up and there was little blood loss. Following the surgery, they moved Averi, ECMO machine and all, to the PICU, where the princess gets to have her very own room!

Here is a diagram of the ECMO contraption... the machine is actually huge, but this gives you an idea of what the circuit does:
Basically there are two cannulas in the neck. Blood is taken out of one of them, cleaned, oxygenated, warmed, and then it is put back into the baby via the other cannula. Interestingly enough, you can see the color change in the blood after it is oxygenated!

The next 48 hours is absolutely crucial. Keep in mind as you read the updates that most babies get a little sicker before they get better. The ECMO is a scary thing to think about. It is the biggest fear that every CDH parent has. Truly, though, is a lifesaver. It will give Averi's lungs a chance to rest, expand, and gradually start working on their own. Kevin and Teresa felt overwhelmed at their first glimpse of Averi. The tubes of blood are about 3/8" in diameter and run several feet. Pictures really cannot prepare you for what it is like in person.

Over the next few days, they'll be running lots of tests to determine how much lung she has on the left side, watching it to see if it expands, and do ultrasounds of the head daily or every other day to make sure there are no bleeds. (There is heparin, a blood thinner, in the ECMO circuit, which means that they have to be super careful to make sure no bleeding occurs. They don't even like to poke the skin with a needle!)

They will also continue to run periodic blood gases, which will determine when they start weaning her off of the ECMO pump. You will probably start seeing reports of "numbers" associated with the ECMO pump. The target number is usually 120-100 before they start talking about taking a baby off of ECMO. My daughter's beginning number was 400, and she was on for 7 days. I'm not sure what number Averi is starting at!

∞•∞Specific prayer requests∞•∞

> As Megan said on Facebook, ECMO is hard on the kidneys. The kidneys depend on the beat of the heart to function. Since ECMO is doing the job of the heart and lungs, the heart doesn't beat at the normal rate... It almost stops. So pray that the kidneys remain functional.

> Bleeding. Pray that there will be no cranial bleeding!

>Pray that as Averi's lungs have a chance to rest, that they will start doing some of the work on their own. As she does this, the ventilator will be turned up and the ECMO pump will be turned down. (While on a high degree of ECMO, they don't use much ventilator... just enough to keep the lungs from collapsing.)

> Eventually we want them to be able to hear some crackling in the lungs which means they are waking up! We also want the pulmonary hypertension level to reduce!

I will update with more specific information as I get it, but this should get you going for right now! :)

blood gas results...

Averi is still on max support, 100% oxygen and 20 iNO. They got the blood gas results, and her oxygen is not as high as they had hoped with her being on 100% oxygen. The rest of the results looked good, so it is a wait and see game as they are not making any changes to her vents or support. The attending physician is concerned because she doesn't seem to be making progress. It is in God's hands....please keep praying!

An addendum to the last update...

Just got a text. Teresa & Kevin left the hospital a bit ago feeling uneasy. As I said, she is stable, but on maximum support. Nurses were supposed to do a blood gas at 10:00, and they were going to call to get the results. Preliminary results of the septic workup show no infection or bacteria, and they're waiting on two other tests. I'm sure Teresa will have more once they get home.

Monday evening update...

Monday evening update: Averi remains stable but is still requiring the maximum amount of inhaled Nitric Oxide (iNO). Carbon dioxide is still high, so the ventilator is constantly being adjusted. Currently, they are still hoping to schedule surgery for Thursday or Friday. Teresa and Kevin are headed home to be with their other kids right now. Please pray for Averi to have a boring night and for Mommy and Daddy to get some rest. They're exhausted!

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!.

Little update...

Teresa posted about an hour ago saying that they were trying to get to the hospital. They called earlier to check on Averi, and her blood gases weren't where they wanted them to be. They have adjusted the settings on the ventilator and the nitric oxide levels. Please keep praying that she will respond the way the doctors want to so that they can move forward and plan surgery.

First Setback...

Averi had the first of hopefully few setbacks that she will have to endure on this CDH rolllercoaster. The honeymoon period is over... the first 24 hours after birth, a lot of times things seem a lot better than they really are, and then reality sets in. Up until now, Averi has pretty much been sustaining herself, but it has taken a toll.

Several times a day, they do a blood gas. (Click on link for a description.) Basically, they take a small amount of blood and test to see how Averi's lungs are functioning. At this point, The oxygen level (O2) looks good, but there is too much carbon dioxide. (CO2) As a result, they switched her from the conventional ventilator to the high fequency ventilator. After that, they noticed that her blood pressure was low and after fixing that, the next blood gas was not satisfactory. She is now on NO2, which honestly I don't know anything about! I do know that the high frequency ventilator is sort of unnerving to watch. It administers up to several hundred breaths a minute, and shakes the bed.

The other issue is that even though she is sedated, she is still very active. This is bad just because she needs to conserve her energy for recovering from surgery, etc. They like to keep CDH babies as calm as possible, and not let them expend too much energy. Other than that, everything looks as they should for now. The combo of machines and drugs seem to be working and her last blood gas was right where it needed to be. They are waiting for the ultrasound of her chest to see what organs are actually in her chest cavity.