The good news boy

Now that we've been home for more than two months, we are checking back in with the various departments that are following Samuel. Our primary clinic is the Diaphragmatic Hernia clinic that is centred in Respirology. Our monthly visits include a nurse, respirologist, pediatrician, surgeon, dietician, respiratory therapist and occupational therapist. Last week we got to see our surgeon - the one who has followed our Sam since his diagnosis last August, who came to the hospital the night he was born, who held his wee organs in her hands and knit him a diaphragm, who continues to give us amazing care and compassion. It was great to see her again. In fact, I might have acted like Bono had walked into the room but I am not saying for sure because it is too embarrassing to have become a surgeon groupie.

Last Tuesday we were at the Children's Hospital for seven hours for ophthalmology clinic in the morning and respiratory clinic in the afternoon. Today we were there for five hours for head shape clinic and cardiology clinic. Here's a run-down on the good news:

Sam's eyes:
Samuel's vision was retested and he has made great strides since he was first assessed in June. Developmentally, he is doing well in recovering from those months when he couldn't really use his vision and had an onslaught of nasty drugs to process. As well, Sam doesn't appear to have any astigmatism (yet) that would affect his vision beyond the ocular albinism. Yay!

Sam's feeding:
The dietician and I reviewed Samuel's progress with bottle feeding and the issues of increased reflux with the NG tube in. The result is a plan for weaning - and hopefully eliminating - his tube feeds. He takes all his food by mouth and we are concentrating his formula to provide extra calories with the same volume. He is also starting solids very slowly.

This is a big deal for a baby who grew his digestive organs in his chest, had three queries of bowel necrosis in the PICU, and could have had oral aversion from his two-plus months of intubation. Not long ago, I was touching his lips with various textures to get him used to stimulation around his mouth, helping him learn not to keep his tongue pressed against the roof of his mouth, and celebrating him being able to keep a half an ounce of tube-fed formula in his belly. Now this.

Sam's oxygen:
Samuel continues on a quarter-litre of oxygen but with daily "sprints" where he is on room air for increasing amounts of time. The goal is to get him off oxygen during the day and have him hooked up only at night. The morning following this fabulous news, I took my kids to school without having to hook Sam up to his portable oxygen tank and lug it with me. It is amazing how I am suddenly annoyed by the machine and the 50 feet of tubing now that I can see an end to this. Before now, it was just as it had to be and didn't bother me at all.

Sam's head:
I'm not gonna lie. The whole helmet thing kind of sucks rocks. I know we will get used to it and it's small potatoes in the big picture. But he hates it and it looks uncomfortable. And when I hold him I no longer get his little soft cheek and yummy neck to nuzzle; I get a hunk of clear co-polymer plastic.

Samuel looks pretty good from face-on, which is the most important thing. But his head remains pointed up behind his right ear and slightly pushed out above one eyebrow. This cranial plaigiocephaly is a result of his laying on his back, often in one position, for all those early weeks. For the first month, he could only lay on his left side because otherwise, his digestive organs slid into his only decent lung. Even after surgery, he was intubated for another six weeks so that it remained difficult to move him. The positioning of the endotracheal tube was the priority. By the time he was extubated, he'd developed some preference for facing left, likely because the ventilator, window, and his mama were always on that side.

I worked diligently after that, putting his head on the pointy parts and stuffing little blankets in around him so that he had to stay that way. And it improved - but not enough. So we have a swanky, costly cranial orthotic to try to remold his head shape while his skull is still malleable. He will wear this 23 hours a day for several months. And someday he'd better want to shave his head and get a big old tatoo back there or something to show off our work. (I hope I'm not sorry I said that.)

Sam's heart:
Cardiology clinic started with an echocardiogram and an ECG. Samuel's heart functions were absolutely normal with no apparent pulmonary hypertension. This is honestly an amazing miracle. His heart was squished up into the right corner of his chest by digestive organs. It was made to function extra hard by pumping to so little lung. It was believed he would always have some pulmonary hypertension because of the early and intense impact on his cardio-pulmonary development.

Our Cardiologist was impressed and delighted. He has followed Samuel since he was hours old in the NICU and has offered us gentle reassurance on many occasions. He remarked to me today that Samuel was a very sick baby and they weren't so sure he was going to stick around. There was sweetness when he examined him and listened to his superstar heart and lungs. Samuel's last drug for cardiopulmonary functioning was stopped; we are down to Zantac and iron.

I couldn't help but think of my grandmother who died last October. A few days after she died, Samuel had a fetal echocardiogram. Here is an excerpt from the blog entry about that day.

I laid still and quiet for nearly an hour while a specially trained sonographer did a very detailed ultrasound of our baby's heart. I feared that we would find something terribly wrong, at which point he would likely be considered palliative at birth. Then I felt my Gramma there in the dimly-lit little room with us and I sensed her telling me, "his heart is strong... his heart is strong." I felt her with us for about 20 minutes and was deeply comforted to think that she was watching over our baby. When the sonographer left the room, Chris leaned over and said, "your Gramma was here. She said the baby's heart is strong." I said, "I know." The Cardiologist came in a few minutes later, having reviewed the films from the echocardiogram. She told us that the baby's heart was strong, squished over to the right side of the chest, yes, but structurally and functionally perfect.

Thank you, Gramma, for blessing our Samuel Meir.

Talkin' up a storm.

Sam's new tricks include more upright play in his new activity centre (thanks Cindy!), scootching around on his back by digging in his heels and pushing off, and getting his own soother in his mouth. Awesome. New tricks also include trying to suck his thumb while soother is in, then wigging out because thumb is inextricably embedded inside soother, and having a 4.2 second transition time from sleeping soundly to screaming like a limb has been severed. Slightly less awesome. And yet, somehow, still entirely awesome.

Playin'.

 

Chillin'.