holding ellis

It has been 34 days since we've held Ellis. Today was another great day.

Ellis Faron Wakes Up (Video)

This video we shot slightly exceeds Blogger's 100 MB limit on posting, so we decided to leave it as is and upload it to YouTube. Please refer to this link to view: http://www.youtube.com/watch?v=DzelyftJNbM. Thank you so very much to everyone for your comments, support, and thoughts directed toward our son. We are so fortunate and grateful to all that has been done in bringing Ellis to this point in his life. Take care; James, Christine, and Lilah.

awake

Ellis was awake for an hour this evening. We could not stop looking into his eyes, and did not leave until he fell asleep.

prayers for benjamin

Please pray for Ellis' ECMO buddy, Benjamin. His condition requires a serious surgery, and he will remain on ECMO until his body is ready.

24 hours

Since we arrived at Children’s, staff and parents have shared stories of how it can take just 24 hours for a baby to turn around and once a baby starts turning around, the recovery speeds up! For the past month, we have been hoping and praying for 24 hours.

It looks like Ellis’ 24 hours was last Wednesday/Thursday, between the two ECMO clamp tests. Ellis is doing well. He continues to show improvement everyday. Today, he started taking some of his own breaths, which you can see recorded by the ventilator. His team continues to turn down the ventilator settings and oxygen he is receiving – he was at 100% oxygen and is now down to about 70%. When he is agitated and his stats start to rise, we are able to calm him with our voices. Amazing!!!

Today was a great day. Today, we talked about Ellis coming home.

That’s right! If he continues to progress at the same rate and has no setbacks, Ellis might be able to come home in a month! Just last Wednesday, James and I were saying our goodbyes to Ellis and that night spoke with our parents about funeral arrangements. And now we might bring him home.

Thank you all for your prayers, positive thoughts and energy. We are so grateful!

Love,

Christine, James, Lilah, and Ellis

hey, turn that ventilation down!

Yesterday, Ellis had steady stats all day. He was given his first feeding of breast milk in the afternoon; he has just been on fluids since birth. He loved the feeding, and is now on a feeding schedule of 3ml every 3 hours. Last night, his team felt it was time to change his position, since he had not been moved for 30 days. Ellis was not at all happy with this adjustment - his stats went crazy, he had to be hand bagged and moved from the oscillator to a conventional ventilator to stabilize him. This was basically a lateral move, as far as support goes. But Ellis appears to have taken quite a liking to the conventional vent.

Today, Ellis' stats have remained strong. His blood gas numbers and chest x-ray continue to get better, and the team has started weaning him off the ventilation support.

Happy 1 month birthday, Ellis! So happy that you are the one giving gifts!

30 hours later

It has been 30 hours since Ellis was taken off ECMO, and he is holding his own. Go Ellis!!!! The NICU team has been able to go down on some oscillator settings. While these adjustments are small, they are in the right direction. He is waking up from the chemical paralysis, and we are seeing more finger and eye movement. Amazing!!! Everyone is very pleased with his progress, but remains cautiously optimistic.

Here are some pictures from Wednesday, before Ellis went off ECMO.

An early one month birthday party

ECMO clamp test

Stats during test...we have NEVER seen stats like this!

Green is heart rate; red is blood pressure; blue are oxygen levels measured in his tissue.

After laying in the same position for almost 3 weeks, Ellis' head is a little flat on his left side!

the setback on ecmo

Ellis had a pulmonary hemorrhage while on ECMO. His team was able to stop the bleeding, keep James and I calm, and save Ellis' life.

Here's a link to what was going on... http://www.ucsfhealth.org/childrens/health_professionals/manuals/29_PulmHemorrhage.pdf

After this episode, his check x-ray was almost completely whited out...not good.

no mo' ecmo

Ellis is no longer on ECMO! His surgeon said he did a pretty good job coming off, and this is the best condition he has seen Ellis in since he arrived at Children's. We will get to see him shortly. The next 12 hours will show how he adjusts to being off ECMO.

going off ecmo

The team is taking Ellis off ECMO as I type this post. A test was preformed this morning at 10:30 and Ellis did an amazing job; his stats held steady and he had his best blood gas to date! The team did push up some of the oscillator settings before the test. These settings are pretty high, but we remain hopeful that Ellis will pull through. This is it! The 11th hour. Our "Hail Mary" play. Ellis, we are fighting for you!

The best news, though...

After 24 days of being chemically paralyzed, we finally looked into his eye (the one that is not swollen) , felt his grasp, and watched his bottom lip move.

We really did not think we would be here today. Last night, we started planning his funeral.

Let me be clear that Ellis is not out of the woods. Once of ECMO, he will require a lot of support, which may not work. But today is another day with Ellis and we are so happy, happy, happy!

Thank you all for your prayers, thoughts, and support!!!

still on ecmo

Ellis did a terrific job weaning, that his team did a test this morning to see how he would do without ECMO. It was a 15 minute test and he did okay. There remains one problem, he is not removing enough CO2 from his blood - the reason he went on ECMO. The CO2 on his blood gas was 107 after the 15 minute test, and normally it should be in a range of 35 to 45, though 60 to 70 would be acceptable right now. His team will probably try another attempt this afternoon and tweak his oscillator settings to get the CO2 down.

Other than the CO2 level, his other stats look good.

children's garden

Saint Louis Children's Hospital has a wonderful rooftop garden on the 8th floor with a spectacular view of Forest Park. Here's a clip of Lilah enjoying the garden.

because of you

And your prayers, positive thoughts and energy we are able to have Ellis for another day. Please know that we are reading your comments and e-mails and feel your love. We are tremendously thankful for all your support.

With love,
Christine, James, Lilah, and Ellis

uncharted treatment

Ellis did REALLY well today!!! His team was able to wean him off ECMO by over 50% - he surprised everyone. Great job, Ellis!!! He is still fighting. Tonight, he will rest at the current support settings, and his surgeon will make the call as to whether or not to move off ECMO tomorrow based on his morning blood-gas test, chest x-ray, and stats. The NICU team is uneasy because no one knows if he can be supported by the oscillator and nitric alone…and going back to ECMO will not be an option.

Normally, the use of ECMO, oscillator, and nitric together are applied in emergency situation when a patient has to be “kicked off” ECMO because of serious bleeds on the brain; it is a transition that spans hours not days. This is a last ditch effort to buy Ellis more time in hopes that he will turn that corner by doing something his team has never done – use the 3 treatments in tandem over a couple days! A counselor told me today that during this morning’s rounds a team member said of Ellis' case, “We are just not ready to let go.” His team is amazing! We are forever grateful for all the time they have given Ellis and our family.

what to wear?

We had a fashion show today, and Ellis was a great sport! Apparel provided by family and friends.

lung transplant?

I figure some of you may be wondering if this is an option. Ellis does not qualify because meconium aspiration is reversible.

day by day, hour by hour

Ellis is cooperating with weening off ECMO. He is still supported by the 3 treatments - ECMO, oscillator, and nitric...just at lower ECMO settings. We have no idea how long this process will take; his doctors are willing to give him as much time as he needs.

Ellis has shown amazing strength, and we are grateful for each day. This week we are focusing on just enjoying our time with our son and no longer concerned so much with what is the next step.

He has been chemically paralyzed since his first day of life because he moved so much...just like in the womb! Today, his team has started a drug to "wake" him up from the paralysis to see how he responds. We are looking forward to seeing some tongue movement and maybe some fingers and toes!

He will be one month old on Thursday, and we are planning a birthday party for him!

weening off ecmo

The process of weening Ellis off ECMO is underway - his life is now supported by ECMO, a high-frequency oscillation ventilator, and nitric oxide. Over the next day or so, the NICU team will move the ECMO settings lower and compensate support with the oscillator and nitric. Because Ellis did not respond to ECMO as well as his doctors anticipated, the team felt it was best to try to ween him while he is stable.

If the weening does not got so well, he will stay on ECMO and they will likely switch out the machine...which has its own complications and usually does not have a positive result.

Thank you for all your prayers and positive thoughts. Today has not been a very good day. The little guy next to Ellis is being put on ECMO as I type this post. James and I offered what we could to his parents. And they were able to see Ellis and how the ECMO machine is hooked up. Our prayers are with this family.

poo really does happen, twice!

So Ellis inhaled poo during delivery and the sewer backed up in our basement over the weekend - poo everywhere. Please no more hardships!!!

the end of ecmo?

After seven days of ventilation, heavy drug therapies, and a slow decline, Ellis was put on ECMO (a heart-lung bypass machine) on September 4th. This machine will give his lungs a chance to heal. This treatment comes with serious complications like, bleeding on the brain.


While on the machine, Ellis has had to overcoming many set backs. He has had bouts of bleeding (thankfully, not on his brain), which required heparin to be stopped for sometime. Heparin is used to keep the blood from clotting while on ECMO and stopping its use rarely happens. Some parts of the machine had to be replaced because of the presence of blood clots. When this happened, the machine was stopped and Ellis was kept alive by hand bagging air into his lungs. The surgeon told us a few days after this event that, “Generally, sick lungs, bleeding and ECMO is a lethal combination. His nurses did a good job of getting him through that situation.” My heart sank! We are very lucky to have Ellis with us today.


After over two weeks of ECMO treatment, Ellis has started to show some signs of improvement. This is good news, but the ECMO machine is showing some signs of wear. So much that it has been recommended to either move him off of ECMO or replace the machine. The surgeon will make his decision on Monday or Tuesday.