She's gonna need a new nickname!

Kevin saw an x-ray of Averi's lungs, and it is NOT walnut-sized. It is now HALF the size of the other lung! The doctors are very happy with this, and so are Kevin & Teresa! They have not changed the ETT yet, just a connector so far, and she is taking time to recover from even that. The worry in changing the ETT tube is that the lungs will collapse from being extubated, and then they'll have to start the reinflating thing all over again. They have ruled everything out except something clogging the ETT that the suctioning tube can't get.

27 days old...

Averi is still critical, but stable. It takes her a bit to recover from things like x-rays and dialysis circuit changes, but as days go by it seems like it is taking her less time to bounce back. They now think that one of the hematomas in her liver is stable, and the other has only grown minimally.

The kids got to see Averi briefly on Christmas Day, but they and Teresa are now showing signs of being sick, so they are all staying away. (Kevin is with Averi.)

...and GREAT news! The left lung has expanded! Kevin heard "good left lung" from one of the residents during rounds last night, and that there are equal upper chest breath sounds.

Pray for Teresa to be healthy, for the other kids to be healthy, and for Averi not to pick up any germs that might be in the air. Pray for continued lung expansion/growth, and increased stability.

Three weeks old... (DAY 10 on ECMO)

I thought I typed some of this out earlier, but I guess I didn't! So this will be a longer post!

Teresa reported earlier today that Averi was doing better today--a lot better--with the change of the ECMO machine. The cardiologist came in and also said she is doing better. The attitude of everyone is more upbeat, but they continue to take things one day at a time. Her right lung is more open. The ventilator settings have been increased. They are not taking her off of ECMO today as previously discussed in the "72 hour plan."

Averi has continued to improve today on the new ECMO circuit. Her lungs have expanded more, the ECMO pump has now been weaned to 250, and the ventilator has been turned up. They are now talking about ECMO bridging (some hospitals use the term cross clamping.) in the next few days. They clamp the tubes so that the machine stops doing the work for her, leaving Averi and the ventilator for a few minutes. They see how she does, and usually clamp and unclamp several times. The blood gasses will tell them how she is doing with just the ventilator. Being at 250 is really good! Again, my only frame of reference is our daughter, who went from 270-140 on the day they did her cross-clamp test. If Averi does well with this, then they will take her off of ECMO soon after that.

Another thing is that she is now finally fluid negative! This will help give her lungs more room to expand.

In all of this, they are learning (again) that Averi does not like change, and that making minute changes and taking longer to do something is much better than rushing her and eventually starting all over again.

Pray for a quiet, peaceful night for Averi. Pray for their other kids... Alex, Kylie, and Ian. This has been really rough on them, as you can imagine!

20 days old (DAY 9 on ECMO)

I don't have much of an update. They changed the ECMO circuit today, and they have been having some very important talks with doctors as to next steps. Things are very, very tenuous, and your prayers are needed more than ever.

A "circuit change" is when they replace all the tubing and primer blood used in the ECMO. They remove baby from ECMO for like a minute and reconnect her with the new stuff. Sometimes it can cause a baby to get a little worse before she gets better, since they often have an inflamatory response to the new tubing and equipment that her blood is coming in contact with. In Averi's case, her oxygen levels were better since the circuit change. Usually a circuit change is necessary every 7-10 days.

One additional tidbit is that her lungs are looking better. She is having blood pressure and heart issues. (Something to do with the right side of the heart, but I don't know any more than that!) Additionally, the liver continues to be a concern.

♥ ♥ ♥ 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!

Small update...

They upped the oxygen for Averi. The doctor wants to let her lungs rest and not push her too much. The top of her right lung is starting to open up! There is still a lot of fluid that they want her to pee out. She is on lasix and another med to help with that. In these situations, they look at the fluid input/output ratio. Since she has extra fluid, she needs to be peeing more than what they are giving her in the way of fluids. She is being fed through IV, and Teresa said that they were going to start concentrating her fluids. She is getting really close to being "fluid negative," which is a GOOD thing! Keep praying!