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!