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!"

Bye bye ECMO!

They are bridging right now! Averi did well overnight. Teresa says, "Michelle [her nurse] was 'freaking-out-excited' because her blood gases were coming back soooooo good last night." She was down to 150 and then down to 120 with NO oxygen from the ECMO. The only oxygen Averi was getting was from the ventilator! It's looking like they will proceed with the REMOVAL OF THE ECMO a little after 10!

This is Averi's 3rd surgery. It usually doesn't take long. Once she is removed from the ECMO, she is certainly not out of the woods. She is still critical. But removing ECMO and all that heparin is a HUGE HUGE thing. Praise God! (And pray for Averi while she's in surgery! -- Though I'm sure I didn't need to say that!)

Picture!

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! :)

Update...

ECMO part of surgery is done... she's doing well with that. They are now beginning the repair.

Plan change!

The doctors have decided that it would be best to go ahead and put Averi on ECMO and then attempt the repair rather than start the repair and have ECMO as a reserve.

They're going in, putting her on ECMO, watching to see how she responds, and if she responds favorably, they'll go ahead and do the repair.

Specific prayers for this... As I've mentioned, they have to use heparin (a blood thinner) in the ECMO circuit. Consequently, surgery while on ECMO is inherently riskier.

I'll just leave it at that for now. I'll let you know when I hear anything new!

•∞•∞• TIME CHANGE!!! •∞•∞•

Averi's surgery has been moved up to 11:30am.

She didn't have a great night. They made lots of ventilator changes, and Averi didn't respond well to them. It takes her a long time to recover each time they do even the smallest change.

I'm not sure if the time change was due to this or just simply the morning schedule opening up.

Please keep praying! I'll post more information as I get it!

Calling all Prayer Warriors!

The doctors met with Kevin and Teresa and expressed that they had all been collaborating on Averi's case and had decided that the best course of action would be to do the repair surgery tomorrow. She will still be on iNO, which isn't their preference, because that is typically their backup plan for a baby that desats after surgery. They told Kevin and Teresa that they'd have the ECMO ready and waiting, and if during the surgery she starts to desat, they will immediately put her on ECMO and then finish the repair. The hope is that she will start to do better once her stomach and intestines are put back where they should be. The other issue is that she is up to a rather high number of breaths per minute on the ventilator, which can cause permanent damage to her "good" lung. They are actually afraid that that could've already occurred.

Since Averi doesn't like change, rather than taking her to the operating room, they will be transforming her room into an operating room. They will be doing the long incision, as they're fairly certain that the hernia is large and that they'll need a Gore-tex patch. The surgeon is optimistic that she'll come out of surgery without ECMO. If the ECMO is needed afterward, it can still be employed.

The surgery is scheduled for 1pm PST. Please be praying for the surgeons & team, for Averi, and for Kevin & Teresa. Just a reminder that she is expected to get sicker for the first 24-48 hours after surgery. So you can also be praying that the recovery period will be smooth and without major complications. If anyone would like to be at the hospital to support the Gaynors and pray with them during the surgery, they are more than open to that. They will be hanging out in the NICU waiting room! If you need more information on that, click "comments" below and I'll get back to you.

A major praise is that they were able to get into the Ronald McDonald House for the weekend. This will enable them to be minutes away from the hospital during Averi's critical post-surgical period!

Teresa also had her post partem check-up today, and they were concerned with her blood pressure. For some reason, they didn't seem to think that it was reasonable for her blood pressure to be up with everything going on! She goes back next week.

If you want more info on ECMO or the surgery, click on the little tags below this post. Only posts with those tags show up, and you can scroll down until you get to the "info" --"big long" :) posts.

Meeting with surgeons...

Kevin and Teresa are rushing to UC Davis to meet with the surgeons at 12:30 PST. I do not yet know what the planned discussion is... ECMO or repair. I'm guessing that ECMO is a strong possibility at this point. Pray for Kevin and Teresa to have strength and clarity of mind as they hear what the surgeons have to say. Lord, protect their little girl!

Weaning, weaning, weaning......

Averi continues to be stable. The doctors have increased the ventilator to provide 60 breaths per minute. It was previously at 45bpm. The increase was done to help vent the excess carbon dioxide out of her blood. So far, this seems to be working! They are now weaning the oxygen again. Averi is currently on 80% O2 & they want her down to 50%. Once they get to 50%, they can start weaning the iNO from 20 to 0 for surgery purposes. The iNO is administered through the ventilator, and helps to reduce pulmonary hypertension. It relaxes the blood vessels in the lung. This allows the blood to flow through the lungs more easily.

For those who want to read more about CDH, I found this site which is pretty succinct. Some of the stats are not very accurate, but the descriptions, diagrams and pictures might be helpful. A wealth of information can also be found at the CHERUBS website.

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!

Still stable!

Today was a good day! Averi's blood gases continue to be good, and at this point, they are no longer talking about putting her on ECMO. This is fantastic news! Her bilirubin level went up instead of down, so she is still under her very special tanning bed.

The doctors have begun talking about scheduling surgery for sometime next week. I thought I'd talk a little bit about what this surgery entails. There are a couple of different ways they can do this surgery, depending on the size of the defect:

1) Primary repair: If the hole in the diaphragm is small enough, it can be repaired by either simply stitching it together or by cutting some of the baby's inner abdominal muscle, flipping it over, and using it to sort of patch the hole. It is called a primary repair because the surgeon is using the baby's own tissue to repair the hernia.

2) Patch repair: If the hole is too large for a primary repair, a synthetic material such as Gore-tex will be used to patch it. In some cases, pig skin will be used, but that seems to be pretty rare.

The advantage to a primary repair is that it is using the baby's own tissue, which obviously will grow and stretch with the baby. Synthetic patches, while a good and acceptable option, do not grow with the baby, and many times need to be replaced as the child grows. The decision on what type of repair to do is usually done in the operating room, once the surgeon has a good visual on how big the hole is.

Sometimes this repair is done laparoscopically (where they do a few small incisions and are guided by camera), and sometimes by making a midline incision and completely opening the baby up. This decision is based on where the hernia is, how big it is, and the surgeon's preference based on the baby's condition.

The other thing to note is that the surgeon will not take the time to perfectly lay out every bit of intestine. The idea is to get in, get everything out of the thoracic cavity, and close up as soon as possible. A CDH child's anatomy will never be exactly like the typical model. The stomach is usually rotated a bit, and the intestines just sort of "fall where they may." This can create reflux issues for the baby as well as complications, and possibly the need for future surgeries later on.

I say all this in order to give you very specific things to start praying about!

• Timing... pray that the doctors are fully aware of everything going on in Averi's body, and that they make a decision on the "when" based on all of the information available. Pray that this will be the optimal time.
• Surgery... best case scenario is a primary repair. Pray that the surgeons will have wisdom as they are making decisions about the repair. Pray for those little intestines to fall in a good location... that the stomach will be positioned well.
• Healing... pray that Averi's body will heal quickly, that there will be no infection, and that her smaller lung will begin to expand rapidly!
• Feeding... though a few weeks off, be praying for Averi's digestive system. Pray that she won't have issues with reflux. Pray that she will eventually be receptive to breastfeeding and not have any oral aversions.

That's probably a lot of information to digest for one post, so I'll just leave it at that! Praise God for giving Averi a couple of really good days! This is a great sign!