Day 14: Holding Steady

Another day of very few changes for little Evie. Some of her medications were reduced, and she started on methadone to help her withdrawl from Fentanyl. She was restless when I first arrived, but then settled into a deep, peaceful sleep:




At home, Gavin has been refusing to eat very much for dinner. I gave up on the pasta I had offered and tried yogurt, which he also rejected. Then I tried to get him to eat one strawberry. He eyed it skeptically...


He eventually took a few tiny bites. Have I said how much I can't wait for Evie to come home so both of them can get back to normal????

Day 13: All Sewn Up

Today Dr. Ilbawi closed up Evie's breastbone. They had closed her skin after the surgery, but left the breastbone open in case they needed to do anything else in her chest, and also because swelling can occur. It took about 20 minutes and they did it at her bedside.

While I was there today, she was awake and was very interested in watching people walking by in the hallway. This is the Evie we know best: she's gotta see everything going on around her! Remember, the visiting nurse who took care of her post-op last March nicknamed her "Miss Nosetta" because she's such a busybody!

Here is Evie giving me her best "What are you waiting for, Mom - get me outta here" look:

Today her nurse noticed that her urine was a bit cloudy, so she sent a sample for analysis. Dr. VanBergen put her back on gentamicin (a strong antibiotic) just in case she has any infections. She had no fever, so that's a good sign.

Tomorrow should be another day of weaning medications and monitoring, and on Friday the doctors plan to remove her from the ventilator. I know she will be thrilled to have that tube out of her throat!

Gavin has behaved wonderfully for all of his babysitters over the last 13 days, but not so well for me. Poor thing, he just doesn't understand where Evie is and I can tell he still misses her like crazy. On top of that, he got another tooth today. I just can't wait until my "wonder twins" are united again!

Day 12: Holding Steady

Not a lot of changes with Evie today. When Dr. Ilbawi checked on her today, he used the word "super" to describe her - it's the second day he's said that! He said if she remains stable like she was today, they will probably close her breastbone tomorrow; if not tomorrow then Thursday.

They have started decreasing some of her medications. One of them is called Fentanyl and it is a powerful narcotic painkiller. We learned that because she has been on a high dose of this for 10 days, they will actually give her Methadone to wean her from it (that's the stuff they give to recovering heroin addicts)!

Here is Evie today, sleeping with her mouth open:


She was awake when I arrived and was squirming and trying to look around. Her eyes were still a bit spacey, though. Her nurse changed her incision dressing and then she fell sound asleep!


Back at home, Gavin worked on destroying a Macy's box:


"My mommy says that you guys aren't as good as Marshall Field's!"

Day 11: Best News So Far!

This morning we got a big and wonderful surprise: one of Evie's doctors called while we were on the way to the hospital and said they had taken her off the ECMO machine completely! Just like that - no weaning or anything. They just turned it off and watched her, and she did just fine.

The doctor explained that they had not given her any heparin, so they could not wean her from the machine because that would involve slowing it down. And slowing it down would mean clots would form, so instead they just shut it off. At her bedside, they were able to perform the surgical procedure of removing the tubing that had connected her to the ECMO. This is what her room looked like when we arrived:



They actually had the hallway blocked off so that no one could even walk by until they were all done with her. Here she is without those large red tubes coming out of her chest:



I know it still looks like she's hooked up to a lot of machines, which she is. But getting off ECMO was a BIG step in the right direction. The doctors gave Evie medication to paralyze her for 24 hours, because they said it was important that she be very still in the first day without ECMO.

On Wednesday they will close up her breastbone (they left it unsutured in case of swelling). From there they will start weaning her off her ventilator and decreasing some of her heavy duty painkillers and sedatives so that she is alert enough to breathe on her own.



We feel like this is the point where she should have been when she came out of surgery 11 days ago. She will probably be in the hospital for at least another week. We are so grateful for everyone's thoughts and prayers! Please keep 'em coming, though, until she's well enough to come home. We miss her like crazy!



Today was also a great day because Sharon's cousin, Susan, welcomed her new baby Erin Kimberly Stank into the world at 10:03AM this morning, 8 lb, 1 oz, and 20.5". Congratulations to the whole family, Daddy Dennis and big brother Sean!

Day 10: Big Day Tomorrow

Evie had a quite day, with visits from both pairs of grandparents throughout the day, which is good because she was very restless for me last night. Tomorrow (Monday) is a very big day for Evie, as she will hopefully begin the process of being weaned off the ECMO machine.


"Don't worry Evie, it's going to be okay."

Right now, her heart has very little blood passing through it, and although it is beating its normal rate, it's not really pumping anything, and there's not much blood being sent to the lungs, as that's all being taken care of by the ECMO machine. Thus, allowing her heart and lungs to rest by not working to hard.

The weaning process begins by turning the amount of flow down on the ECMO machine, and filling her heart back up with blood; then watching very closely how it performs under more normal circumstances. Sharon and I will both be there tomorrow and will be watching very anxiously throughout the day. Although her heart has shown "normal" function the last three days, if it doesn't perform well under regular circumstances, it will be bad. We are very hopeful and praying, though, that everything works out fine.

Dr. Ilbawi explained to us that Evie's heart had to, "find a new balance," as it had been pumping in a set rhythm with its single ventricle for the last year and a a half. By cutting a hole in her lower ventricle and adding the conduit to increase flow to the lungs, this new pressure upset the balance and the heart muscle was now working in a different way, and so for the past 10 days the ECMO machine has allowed her heart to find its new rhythm and strengthen the muscles needed to adapt to the new pump and flow through the conduit.

While you're saying prayers for Evie, please say an extra one for Sharon's cousin, Susan, who will be having a scheduled c-section at 9:30AM on Monday morning. God bless, Susan and family!

Here's Gavin praying over Evie:

Day 9: Valentines Day

Happy Valentines Day, everyone! Evie is holding steady and has not changed much from yesterday; she has little blood in her lungs and her chest X-Ray from today looks good as well. The plan is still to start weaning her off the ECMO machine on Monday.

Last night (Friday) Auntie Clare joined Francis in his visit:

Evie woke up and was very active - she tried to reach for Francis:

And touch his head:


"Stretching feels good, Daddy! Thanks for taking my wrist restraints off for a little while!"

This photo below is from today (Saturday). Evie had woken up and was wiggling all around. Her nurses said she was "doing the Watusi" in her bed. Of course, she acted all sleepy when I took out the camera:

When she fell back asleep, she held my finger just as tight as can be:

Here's a short video of her while she was awake:

Day 8 Update: Steady As She Goes

It's Sharon blogging. When I got up to Evie's room today, there were seven people crammed in it, all with hairnets and masks. I opted to wait outside the door and watch through the glass until her nurse was able to get away and explain what they were doing. They were changing the ECMO machine because it had some blood clots in it (the hospital must have several, maybe dozens, of these ECMO machines). They also changed the dressing on her incision.

As Francis noted in the post below, clots form more easily now because Evie is not being given Heperin through her IV lines, so it is necessary to change the entire machine and most of her tubing. I could see her squirming while this was happening, but once it was finished she fell sound asleep.

She slept for about two hours. Her nurse, Jenny, is one of our favorite nurses and has cared for Evie during all of her post-op stays in ICU. Jenny told me that we could move Evie's arms slightly to "exercise" them, so I did that with her, but Evie was zonked out the entire time.

She only woke up when Dr. Ilbawi walked into the room to check on her. He is pleased with her progress: she had even less bleeding in her lungs today than yesterday (as Jenny said, "1000 % improvement"). Today's chest X-Ray also showed less blood in her lungs. The plan is to hold steady tomorrow, start Heperin again on Sunday, and begin weaning her off ECMO on Monday! We just can't wait to get her seperated from that machine.

Here is Evie watching one of the nurses adjust one of her meds:


Back at home, Gavin has enjoyed running around in just his diaper. He had a great time today with Nana & Grandpa Cermak, and when I got home we took him to Whole Foods. We had not been to the new Naperville store, and we thought Gavin would enjoy it. He had fun riding in the stroller, holding onto some chips and a water bottle, and tasting a sample of Puffin cereal!

Day 7 Update - Good News!

Evie was awake when I arrived Thursday evening, but she fell asleep quickly after being given another dose of sedation and was quite peaceful for the entire evening. She fights the sedation so much; she wants to be up and about!

Evie has an echo cardiogram every day, which allows the doctors to view her heart's motion and pumping action in real time. Two days ago, their assessment of her heart function was "poor." Yesterday, their assessment was "moderate," and today, the assessment was NORMAL!

This is such fantastic news, but we are almost too scared to start celebrating. I learned the results of today's echo (which took place around 2pm while Grandma and Granpa Cordes were visiting) while I was spending the evening with Evie in the hospital. The nurses let me know what the results were, but we haven't spoken to any of her doctors about it yet, and what this means for her treatment.

I'm hopeful that two days in a row of "normal" heart function would mean she could come off of the ECMO machine. The bleeding in her lungs seems to have really slowed down, but we don't know for sure if the bleeding artery identified in her lung has fully clotted yet.

This is all great news, but she is no where near out of the woods yet, so please continue to pray for her! All of the love and support, emails and comments posted to the blog mean so much to our family and we are very grateful for it.

As mentioned yesterday, she is not receiving any Heparin directly, but her ECMO machine is using a Heparin-bonded circuit (meaning the drug is in the tubes). Unfortunately, this type of circuit needs to be switched out every 48 hours and blood clots tend to start forming in the tubes, which can impede its performance.

You can see the clotting in the two pictures below (click on them for a larger version, I've circled the clots with a white circle). The clots appear as white streaks within the tubes.

Look near the bottom of the photo below, you can see the white streaking indicating a blood clot at the bottom of the tube.

Day 7: Still Waiting

We don't have much in the way of updates today. We're still hoping that the blood vessel in Evie's lung clots on its own and she won't need another procedure to fix it. By tomorrow the 48 hour waiting period (not giving her heperin via IV) will end, and the docs should decide the next step based on how she's doing.

Here are some pictures taken a few days before Evie went in the hospital. She and Gavin opened up Francis' work bag and were perusing his papers:






Gavin reviews the court calendar:



"Hmm, Evie, it looks like Daddy's motion is up tomorrow at 9 am."



"I'd say that Daddy is fully prepared to win his motion, Gavin!"

Day 6 Update

We had a very encouraging talk with Dr. Ilbawi, Dr. VanBergen and the rest of the staff today. Dr. Ilbawi confirmed that they had discovered a bronchia off-shoot from her trachea, and after suctioning all the blood out of her lungs, they were able to see some bleeding in real-time come from this extra bronchia. As I described in the last post, this off-shoot is above the corina, i.e., the main split of her bronchial tubes. It is feeding her lungs oxygen and blood, but they do not know how much exactly. It is very small, though.

I grabbed the picture below from the Internet (it's horrible, I know) and added the location of the "extra bronchia" that is going to her left lung, above the main split. The doctors said that having this extra bronchia was unusual, and it has never shown up on any of her other x-rays or angiograms (probably because it's so small), but Evie's entire respiratory system is unusual; it's a hodgepodge of redirected arteries, veins and brochi, as her body made adaptations while she was developing in the womb to make sure that her lungs received oxygen and blood when her pulmonary artery did not develop. Which, itself, is really amazing when you think about it.



Before taking invasive procedures to try and tie-off or block the bleeding, the doctors' plan is to try and encourage the artery to stop bleeding on its own over the next 48 hours. They have stopped giving Evie heparin directly (which is an anticoagulant that prevents blood clotting), in the hope that the bleeding artery in the off-shoot bronchia will clot and stop bleeding on its own.

It's dangerous to not give her any heparin at all, though, so her ECMO machine was switched over to a new circuit (as they call it) with a new kind of oxygenator, and one that also has its tubes coated with heparin, which will prevent the blood flowing through the ECMO from clotting. The photo below is of the new oxygenator.



If the bleeding stops in the next 48 hours, then great! If not, a more invasive approach will be necessary to manually stop the bleeding. A CT scan will be necessary to try and assess the size of the off-shoot bronchia and surgery will be required. But let's all hope and pray it doesn't come to that! Once the blood is out of her lungs, they will be able to work more efficiently.

Regarding Evie's heart function, both doctors were pleased with the small progress her heart has made and believe that it will fully recover to its normal function in time, although it is taking longer than they would expect and like it to happen in. Dr. Ilbawi said they will perform daily echo cardiograms to watch the progress, but he was encouraged simply by observing the increased blood pressure she was exhibiting from someone on an ECMO at this point.

So, we're back to "wait and see" and the next 48 hours will be an anxious time as we certainly hope this bleeding artery stops on its own. Evie herself was awake (if not fully conscious) for a good portion of the afternoon and very squirmy. Sometimes Sharon and I feel like we're doing more harm than good by sitting with her and trying to calm her, because just the sound of our voice gets her all riled up (which is what we're trying to avoid!).

Gavin is doing a little better and today he spent the day with his Uncle David while Sharon and I were with Evie. He was in a great mood when we got home and was very playful. However, we have noticed some significant changes in his playing habits.

For example, pushing their walk 'n ride carts around the house was a favorite game between Gavin and Evie and he was so sweet how he would wait for her to catch up to him. However, since she's been gone, he won't play with his walking cart by himself at all. When Felix and Pierre were over the other day and one of them started pushing the cart, then Gavin joined in briefly. But if Gavin is alone, he won't touch it.



"Decisions, decisions. Yogurt, milk, baby food, hmmm...."



"Can I have some of this chicken fried rice, Mom?"