Monday, October 26, 2009
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
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
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!
Wednesday, October 14, 2009
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!
Saturday, October 10, 2009
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