we've been selfish

We've been a bit selfish with our time, sorry! Ellis is doing very well. He is keeping himself busy - sleeping, eating, pooping, playing...sleeping, eating, pooping, playing. Life is so very good.

Here are the pictures we promised a week ago, with comments from Ellis.

Getting ready to leave:


"We're going where?!?!"


"Oh, you're serious about this home thing."


"Hold on! You mean I have to leave all my lady friends?"


"I suppose I could give it a try."

At home:


"This home place is kinda boring."


"But this bed isn't too bad."


"I love this guy."


"She lives here, too?"


"What do I have to do to go back to my ladies - stop breathing?"


"So this is the sun, eh?"


"Playing is hard work..."


"Please, please, I need my ladies!"

ellis has left the building

We are on our way home with Ellis. Pictures of Ellis outside of the NICU to follow.

we'd be home by sunday

While driving to the hospital during the early morning of August 27th, we were full of excitement. We would soon have our new baby in our arms and expected to be home no later than Sunday. We didn’t bring our newborn home that Sunday, but we are bringing him home on Monday.

That’s right! Ellis is scheduled to be discharged on Monday, November 9th. We are so full of emotion - thrilled to finally have him home, relieved that the rollercoaster is coming to an end, sad to leave our new friends behind, and a bit nervous to care for Ellis without help from the fabulous staff at Children’s.

The amazing part: Ellis is coming home without any medical support. No oxygen, no feeding tubes! Nothing!!!!

Here’s a close look at Ellis, cannula free!


Weeks ago I asked Lilah to draw a picture for Ellis. To my surprise, she drew what looks a lot like our family, with Ellis and his "wires" at the end. Of course, when asked what she drew, she responded with "circles". Yes, Lilah, those are circles.

nicu mates

A list of links was added to stories of other kiddos in the NICU. It's on the right, under "His Diagnosis". Bayta is Ellis' neighbor, whom he keeps eyeing. She is very cute!

big boy bed for ben

Benjamin continues his climb up Mount Everest! His surgery went well, organs have been returned to their proper location, and he is being weaned off ventilation support and medications. Ben is exceptional!

Today was a very special day for Ben and his parents. He was moved to a big boy bed, AND his mommy held him for the first time! It has been a long 48 days for this family. We are so proud of you, Ben!

Check out more of Ben’s story here: http://benjaminhubble.blogspot.com/

the H word

Ellis' team has been droppin' the H word ... HOME! If everything stays on course, we expect to bring our son home in a week or two. It is so moving to type those words. Over 5 weeks ago we were planning his funeral, then after coming off ECMO, we considered having him home by Thanksgiving a long shot, with Christmas being more realistic. Ellis’ recovery has been extraordinary.

His feeding tube was removed yesterday and he continues to feed on demand – when he wants and how much. He is either nursing or taking a bottle, and so far, is gaining the appropriate amount of weight. Also, Ellis is down to .1 liter of oxygen, which is low enough to bring him home. That is just a small whiff, where we plan to wean him over the following weeks. So the criteria for coming home are: 1) takes all feedings by mouth; 2) wakes when hungry; and 3) passes a standard car seat tolerance test. The latter insures that Ellis is able to maintain his breathing for 2 hours while in the car seat.

We are so fortunate for Ellis' continued progress and milestones.

Here is Ellis’ inspirational Halloween costume – enjoy!

You can view here below or click on this YouTube link: http://www.youtube.com/watch?v=knbTrOqZr5M
for a clearer and larger version. Thank you again to everyone for your comments, support, and thoughts directed toward our son. We are so grateful to all that has been done for Ellis.
Take care; James, Christine, and Lilah.

boo

Ellis will be two months old tomorrow! He is doing very well. Today, he was moved from high humidity (3 liters of pressure and room air) to low flow. Low flow is oxygen support that he can come home on if necessary. It is 100% oxygen and very, very low flow. He started at 1 liter of pressure and is already down to .4 - he will continue to be weaned at a rate of .1 over the next day or so. Also, he is completely free of all meds! The last dose of morphine was a few days ago. He is happy and alert, and only cries when he is hungry, tired, or needs a diaper change. Um…just like a baby.

Ellis' most recent accomplishment is how well he is eating. He took to both the bottle and nursing like he has been doing it since day one. And he is able to transition between bottle and nursing with ease. Currently, he is receiving 90ml (3oz) of breast milk every 3 hours. He is taking between 40 to 65ml from the bottle and the remainder is then given through the feeding tube. When I nurse, he gets an additional 45ml bolus feeding. It may take a bit for him to get to 90ml by mouth since his stomach has never had to handle large volumes over a short period of time.

Some of Ellis' new moves...

update on benjamin

Benjamin is AMAZING!!! He was abruptly taken off ECMO almost two weeks and continues to hold his own. He is fighting a very hard fight, too. Tomorrow, he is scheduled for surgery to correct a serious condition – Congenital Diaphragmatic Hernia.

We are thinking of this little guy and his family all the time. CDH is a very serious condition and involves a long journey to recovery. Continue to fight hard, Ben. We have seen your surprises, and have no doubt you have many more!

hello brother, hello sister

Ellis is doing very well! He was taken off the convention ventilator last week and briefly put on the CPAP. He did not dig the CPAP at all and was moved to high-humidity about 4 hours later. Each breath he takes now is his own, while still being supplied a little oxygen through the nasal cannula. His blood gas numbers have remained at good levels for over a week, so his team has stopped the daily blood test. No more pricks on those little feet!!!

Doctors were able to remove is IV line after weaning the few remaining medications. He is now given Morphine for pain and Clonidine to help with withdrawal from Versed and Fentanyl. And now that he is off those powerful drugs, we are seeing more movement in his limbs everyday - very encouraging!

Ellis is on a continuous feed of breast milk through a feeding tube. This week, his team will transition him to bolus feedings to mimic a regular feeding schedule. Yesterday, we introduced the bottle! He sucked down about 8ml. Everyone has warned us that feedings are typically the last hurdle to overcome and it can take some time for a NICU baby to master suck, swallow, and breathe. It is all up to you, Ellis!

Lilah and Ellis demonstrate their silent film skills as I try to direct a tender moment!

welcome to holland

The results from Ellis' brain MRI are in and we've been spending the last two days digesting what this means for our family. There are two damaged areas worth noting - the thalamus, and the area that processes vision for the left eye. The injury to the thalamus is most concerning.

The team believes that the right eye will compensate for any left eye impairment. The damage to the thalamus is different. It is on both sides, the right being worse than the left. The thalamus is responsible for "relaying" messages from the brain to other parts of the body and visa versa. And while other areas of the brain do a good job of "rewiring" after an injury, the thalamus does not.

The damage to Ellis' brain can be described as mild to moderate. The team was very vague as to what this means for Ellis. They expect some motor, sensory, and learning disabilities. They said that he will probably be able to walk, but will likely need assistance with some skills. What those skills are, and what assistance will be required, will only be revealed as Ellis develops. Some disabilities might be small, some might be big; there is just no way of knowing right now.

A couple weeks ago a doctor on Ellis' team handed us a copy of an essay written by a mother of a special needs child, here's a link to the essay: http://www.our-kids.org/Archives/Holland.html

Italy is no longer on our itinerary. Holland, we are on our way!

week in review

Ellis continues on the road to recovery! On Monday, his team moved him from the conventional vent to high humidity (oxygen is supplied through nasal cannula). After about 14 hours, he was moved to the CPAP because he was working too hard to breathe. But even though his blood gas numbers improved with the CPAP, Ellis was re-intibated early Tuesday evening. The plan is to keep Ellis on the conventional vent on low settings until after his brain MRI which is scheduled for tomorrow afternoon.

Ellis is able to move his hands and feet, and initiating movements in his shoulders, trunk, elbows and knees. While these movements are small, they are very, very good signs that he may be able to regain motor function. His muscles are still very weak after not moving for 4 weeks.

Ellis is acting more and more like a baby who is not so sick. He cries when he has a dirty diaper, spits up, smiles, and even took to a pacifier pretty well. And he was moved to a big boy bed…a crib!


I'm back to working part-time to save remaining FMLA for when Ellis comes home. Thank you all for your continued support.

Love - Christine, James, Lilah, and Ellis

Nasal Cannula

CPAP

Before re-intibation

the best present ever

James celebrated his birthday on Saturday by holding Ellis for the second time. The first being about a minute, just after Ellis was born, 39 days ago. Ellis is doing well. His team hopes to remove ventilation support early this week and move him to a crib.

praying to baby jesus

Ellis continues to reveal his strength everyday! He is regaining more mobility in his hands and feet, and even tried to move his right shoulder today. He did have a little bit of a setback this morning when a portion of his right lung collapsed due to secretions. Since he can't swallow, some secretions make their way to his lungs. This is to be expected because his is intubated, and was corrected by moving him to his left side and periodically patting his chest.

My father made this rosary for Ellis. Here's a picture taken by one of his nurses.

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.