Easy does it

Samuel remained stable today and we are seeing some improvements. He was able to wean from some of the interventions that have have gotten him through the past few days. He is down on the dopamine that helps his heart and he is almost off the nitric oxide that helps his blood vessels open to reduce pressure. They took him off of the midazolam that was sedating him so he is just on fentanyl for pain relief and that is sedating in its own right. It is odd to think that my wee baby is already addicted to fentanyl and will need to be carefully weaned when the time comes.

Having Samuel less sedated was good for my mama heart as I knew it meant we were heading in the right direction. I was elated to see the signs of life returning to my baby. He makes little faces as he sleeps and he squeezes my finger when we hold hands. He even opened his eyes for about ten minutes this afternoon and we had a mother-son love-a-thon. I know, I know, every mother says this, but he is sooooo beautiful. I sit and study his little fingernails and his nose and belly button. I tend not to notice his swelling and even the tubes and wires are a bit 'normal' to me now. The only way that you can tell from the outside that anything is wrong inside is when Samuel gets the hiccups; we can see his diaphragm convulsing on the right side of his chest but not on the left.  

The goal now is to get Samuel on the least amount of support he needs to still be doing well. There is ongoing gentle tweaking of the different supports and then watching his numbers to see whether he is okay with the change or not. It is essential that Samuel be using the minimal support he needs before heading to the operating room so that there are more options to intervene during his post-surgical recovery. It is expected that he will decompensate for several days while his body deals with the trauma of general anesthetic and a major organ reshuffling.

He did have some blips today. He desatted slightly when he got an injection of RSV antibodies in his tiny thigh but he was able to recover almost completely on his own. Samuel's severe pulmonary hypoplasia qualifies him for the program that offers protection against RSV, an illness that presents as a cold in a healthy person but that could kill a baby like Samuel. It is terribly anxiety provoking to know that an otherwise innocuous virus could be my baby's demise after all the other fighting he is doing. I try not to think about what my other boys could bring home from school; it makes me want to put my whole family into a bubble.

Samuel also desatted when his brothers came to visit him. I don't blame the big boys because they were really well-behaved and only stayed ten minutes. Besides, Samuel can pull this desatting thing any old time if he badly needs an airway suction. But it is possible that he was taxed by the visit even though he was tolerating stimulation much better today. Maybe, Samuel recognized his brothers using whispering sweet voices and it was just too much of a shock after nine months in utero hearing them yell and fight. Indeed, if I think of it that way, I might just have desatted as well! The nurse and respiratory therapist tended to the desat and I high-tailed it out of there with the boys, who were happily eating green popsicles from Eva. 

Dr. Brindle came by this evening to talk about taking Samuel to surgery. That there is a timeline for this on the table again is promising. I am feeling very cautious after our bumps in the road this week and I just want to know that our sweet baby is as strong as he can be and ready for this next critical step. 



My 4 boys together for the first time. Jakey loooves his new baby brother and is thrilled with having been displaced as the youngest in the family. You can clearly see his delight and excitement.

Jakey brightens: Wait, did someone say I get a popsicle?!



Daniel is fascinated by the technology aspect of his baby brother's early existence.



Zachary goes in for a better view of wee Samuel.