Some good-byes

This week has been one of great progress for Samuel. With nothing growing in his cultures, we said good-bye to antibiotics and he reached full feeds in a few days so that we could say good-bye to the TPN. He will keep his PICC line for now but there is only a sugar-heparin solution running through it to keep the line open. All of his other medications are oral so they are administered through his NG tube.

Sleep goal attained. Soother unnecessary but kept near by in case of emergency.

Here he is in his bouncy chair with a couple of friends.
The nasal prongs were drooping so we taped them to his nose. :)

Our most significant good-bye this week was to ventilation. On Thursday, Samuel was put on regular oxygen nasal cannula. There is no ventilator machine, no pressure support, no monitor for CO2 levels. Just oxygen. He is getting 30% oxygen, which is only 9% higher than plain ole room air. Lovely.

Sleeping in mama's lap in new tiny nasal prongs and swanky blue outfit.

Samuel had visits this week from his Great-Auntie Maria and his big brother Daniel. I made my Auntie Maria promise not to go too hard on the "miracle baby" thing for fear of turning Samuel into a raging brat. But he is quite wonderful, if I do say so myself.

Daniel was delighted to see Samuel and to comfort him by giving him a soother. Samuel smiled and kicked and played with us for nearly an hour. I almost forgot why he needed to be in the hospital at all. Daniel said to me, "It's amazing how good it feels to be able to make him happy and how hard it is when he is upset and I can't comfort him." Wise little man. I told him that was pretty much the essence of loving someone.

I know it is blurry but Daniel and I decided that the value of sharing Samuel's smile outweighed issues of photo quality.

A big good-bye is now looming. Plans are for Samuel to leave ICU and go to Unit 2 of the Children's Hospital on Monday. On Friday, some of his current medical team met with some of his upcoming team to discuss where he has come from and where he still needs to go. It was a bit tough to hear of all his difficulties to date summed up like that and to talk about all the things that remain significant concerns. He still has pulmonary hypertension. He will still be at high risk if he gets any infections. He will need more physiotherapy and occupational therapy, as well as an assessment of his hearing, vision, and brain development.

His greatest challenge at this point will likely be getting his belly working. He is showing signs of having reflux, which is a very common problem in babies like Samuel. He grew his entire digestive tract in his chest and things are still a little mixed up in there. He has not gained any weight in several weeks despite being fed more than typical calories. He was three kilograms at birth and has been glimpsing the four kilogram mark for some time now. Odd to think that he is nearly three months old and still not the birthweight of my other babies.

I am dealing with my separation anxiety as we prepare to leave ICU life. The expertise and love in this place have saved our baby and held us up through some awfully dark times. Since Sam seems to garner love where ever he goes, I am sure that we will find more on his next stage of the journey.

"Please help me. This woman makes me clap my hands every time I smile or fart."

Because every baby needs a velour leisure suit.