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!)

The new plan...

The current plan is to put Averi back on the HFOV (it's already been done) in hopes of getting her off of ECMO within 72 hours. She is still on diureic drugs and a low setting of dialysis to work on getting the excess fluid out. Once they get to the point where she is off of ECMO, they will not put her back on. It will be up to Averi, the ventilator, and most importantly God. Thank you for your continued prayers!

Wednesday night (16 days old-Day 5 on ECMO)

Averi started peeing again, but she's not fluid negative yet. The doctor said the plan is to adjust the ventilator and see what her lungs do. They also plan to do an ultrasound on Friday to check her pulmonary hypertension.

•∞•∞• 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.

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!

Back to Maximum Support...

Averi had a rough night. They tried to wean her on the iNO but it backfired, so she's back on the highest settings on everything. They don't know what the plan is at this point, (they haven't met with the doctors yet) but have asked for fervent prayers. I'll keep you updated as I get further information.

More talk of ECMO

Yesterday was a long day at the hospital. At 2:00 AM, Teresa reported that Averi had been weaned on her oxygen from 80 to 67 during the course of the day. They ended up turning it back up to 70 because her blood gases showed that her oxygen level was a little low. The doctors are having a meeting about Averi today and there is talk of ECMO again. During these meetings they usually have every available doctor, and sometimes the respiratory therapists, as well as every bit of information in the baby's file. They lay out the info and systematically go through it, and then they discuss the next course of action. It is a good way to get the whole picture laid out there and get a good comprehensive view of what's going on. Averi gets the benefit of the collaboration of doctors who collectively likely have centuries of experience. Teresa is nervous about the prospect of ECMO and what they will recommend. For now, Averi remains stable.

Please pray that the doctors would be given and extra portion of wisdom and that whatever decisions they make will be soundly made, knowing every aspect of what is going on with Averi. Pray also for Teresa and Kevin to feel the peace that passes all understanding. Thank you, friends!

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.

#2 Update

Averi had her second blood transfusion last night before she crashed. Her last blood gas was not where they wanted it to be, so they are thinking about putting an arterial line in her right arm. I clarified with her that Averi is no longer on the high frequency ventilator, but has been switched back to the conventional monitor.

What is an arterial line? Why the right arm?

Pulmonary hypertension that is present in CDH babies causes deoxygenated blood to be shunted away from the lungs and into the aorta and circulate into body. The shunting happens from right to left. Because of this, they use the radial artery (if you hold your right arm so that your palm is parallel to the ceiling, the artery will be on the outside--along the radius bone, where it gets its name--of your forearm. ) on the right arm to obtain blood gas samples from preductal blood. This in conjunction with a postductal pulse oximeter usually provides fairly accurate results. Warning: I'm about to get all nerdy on you! The pulse-ox monitor is a device that has a pair of small LEDs (one red, one infrared) lined up with a photodiode through a translucent part of the body. In a newborn, they usually use the hand or foot. Each light has its own wavelength. Absorption at these wavelengths differs between oxygenated hemoglobin and deoxygenated hemoglobin. The ratio of the absorption of these lights is directly related to the oxy/deoxyhemoglobin ratio. They then get an idea of the oxygen level. You might have had a doctor get a pulse ox from you before. In older children and adults, it is a plastic thing that they pinch and put on your finger.

Anyway, all that to say that they try to use multiple tools to give them information so that they can ensure that their numbers are accurate. An arterial line essentially is the same thing as an IV, but instead of a vein, they use an artery.

Teresa is exhausted and worried about Averi and feels like they've taken a huge step back. However, the doctors are satisfied with where she is right now. With CDH, it is literally one hour... and sometimes one minute... at a time. Please keep praying!

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!.

Update...

Averi is still under the phototherapy lights. She has developed a rash and a fever. They think both are caused by the lights. Please pray that his is the case, and that it isn't some sort of infection and/or allergic reaction. They are now taking her gases every 6-8 hours so that she can regenerate her own blood. It seems to be working. They are also trying to wean her from the nitric oxide and have reduced her O2 from 90 to 85. This didn't go well, it is now back up to 87. She started at 95. Just for point of reference, room air--the air that you and I breathe--is around 21% oxygen.

They are now waiting for the next round of tests.

Continue to pray for Kevin, Teresa, and family. CDH really is a roller coaster ride. It probably sounds cliché by now, but it really is an apt descriptor. There is no predictable pattern as to what is around the next bend.

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.

Tests, tests, and more tests...

Ok lots of tests were done today, including head, chest, & heart ultrasounds. They don't have the results yet. Kevin and Teresa also haven't had a chance to talk to the doctors yet. Averi's nurse has been awesome and informative. For now, it seems that everyone is happy with how she is doing on nitric oxide and the high frequency ventilator...she is stable. They thank all of you for your continued prayers.

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.