Monday, November 16, 2009

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!"

Monday, November 9, 2009

ellis has left the building

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

Thursday, November 5, 2009

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.

Monday, November 2, 2009

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:

Sunday, November 1, 2009

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:
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.

Monday, October 26, 2009


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...