EIGHT MONTHS OLD!

Our Sam is eight months old. Last year at this time is when all the really bad news was coming at us. The fetal morphology ultrasound and echocardiogram confirmed what we already knew - a severe and early-onset congenital diaphragmatic hernia, stomach and bowel up there next to the heart, heart squished over to the right. Then the MRI gave us the really damning information - liver up in the chest and a total FLV (fetal lung volume) of 22.5%. After that, there was no doctor who had much hopeful to say.

And yet here he is. He grew himself a couple of lungs, including one stuffed up in there with bowel, stomach, liver and spleen. His heart is 'perfect.' He weighs more than 14 pounds and is outgrowing his 3-6 month clothes. He is babbling and communicating. He gets all of his nutrition without tube feeds and now he is starting solids. He pees and poops and burps and plays.

When Sam was about six weeks old, we started to let it sink in that we might get to keep him. I started practicing saying, "I have four sons." I don't practice this anymore. It just is.

Sam's new favourite noise is made by smacking his bottom lip against his top gum. It sounds like he is making a kissing sound so we (okay... "I") pretend he is blowing kisses. For a while, I tried to make the same sound back to him but it was never quite right. I realized this is because I have teeth. You can't replicate this sound unless you have naked gums to smack your lips against. Sam's Great Uncle Willy is always happy for an excuse to pop out his teeth and freak people out, so I am sure the two of them will have a great time together. (Sorry Uncle Willy, I couldn't resist.)

Making kissy faces with Mum.

Samuel started solids about a month ago and we've been going very slowly. Even though he's done fabulously with feeding so far, we are still aware of possible issues of oral aversion and a weak swallow reflex. We never put something into his mouth before he opens his mouth to invite it. We watch his cues and respond when he pushes things out with his tongue. He is fed side-lying so that any extra milk pools in his cheek and he can pace his own swallowing. As he's getting stronger, he can drink sitting more upright without dribbling it all out the corner of his mouth.

We've been similarly cautious with introducing solids. We offer very runny foods by spoon, putting just a bit on his lips and letting him explore it, only putting the spoon in his mouth if he opens up for it. The OT said he would just "get it" one day - and today was that day. He was opening his mouth and wanting more. He didn't take a lot but it was still good practice. He even grabbed the bowl, stuck his hands in it, and managed to splatter some against the wall nearby. I am excited to start making my sweet potato biscuits and other baby foods. I am less excited to start scraping baby food crud off of every surface in the house.

Eating! Mmm-mmm!

Sam has gotten a lot stronger in the last while and is getting closer to sitting on his own. He brings his feet up and entertains himself watching them, but he can't put his toes in his mouth as it compresses his oddly positioned stomach and he throws up. He does well in tummy time and has figured out how to get his knees underneath his body. Unfortunately, he has not also figured out how to push all the way up on his hands instead of just his elbows, so his new knee trick results in a face plant.

He is comfortable in the Bumbo and the Jolly Jumper now, which has given him some new places to play. He bounces gently in the Jumper until someone speaks to him and then he gets busy jumping vigourously and grinning. He is a bit of a performer and, while we will never match the attention he received for those first several months, his brothers are an appreciative audience. He's a super happy, smiley guy.

Jakey and Sam having a play.

In the Jolly Jumper.
(Those wee chicken legs are thanks to his Mama, thank you very much.)

We had respiratory/diaphragmatic hernia clinic a few days ago - the biggie where we see respirologist, pediatrician, OT, dietician, respiratory therapist and sometimes surgeon. We were at the hospital for four hours. There were not a lot of changes except Sam's oxygen is down to a flow of 1/8 of a litre - just a whiff, really - and he can be on room air pretty much any time he is not eating or sleeping. We acknowledged that he has done fabulously without the NG tube and so he is officially tube-free. We made some feeding and development plans. We do not have to go back for two months because Samuel is doing so well.

Probably our biggest concern now is the impending flu season. Samuel is strong - but not that strong. A cold or a gastrointestinal illness he could probably manage, although it may involve hospital visits or stays. Influenza or RSV, however, could be more serious for Samuel than I care to think about. So we walk that line between being nonchalant and living in a bubble. We wash our hands and take our vitamins and probiotics. Sam will be staying home from birthday parties and soccer games. But he is part of a family of six and we've had enough of missing him being with us. He handled a whole afternoon of loud Terry Fox activities at the boys' school (although his "LOUD" tolerance has got to be pretty darn high living in this house). And this weekend he will have his first Thanksgiving gathering.

Peaceful sleeping. Look at those wee fingers and that sweet skiff of hair. Yum.

I know that some people have wondered if Samuel has any neurological difficulties because of his beginnings. It's a good question - one that I asked over and over again of different people along his journey. The doctors have never had concerns in this area. If there had been any signs or reasons to worry, Sam would have had an MRI of his brain. This was not deemed necessary.

Developmentally, Sam is more like a six month old than an eight month old. I sometimes think of his extubation date as his birthday since before that he really could do nothing like a normal baby. That day that he could finally breathe on his own was the day that he could start to move and grow and use his muscles, to see, hear, and interact with his world, to be picked up, dressed, and bathed. If I think in those terms, Samuel is right on track. It also makes me feel like I missed less of his babyhood than if I let him be eight months old already. Win-win.