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...

Wednesday, October 21, 2009

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!

Monday, October 19, 2009

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!

Wednesday, October 14, 2009

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:

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

Saturday, October 10, 2009

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


Before re-intibation

Sunday, October 4, 2009

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.

Friday, October 2, 2009

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.