Musings

Well, we have a tentative discharge date for Samuel to come home to us. I can't tell you when it is because I am too superstitious. But it is soon. Before he turns five months. But not much before. Sorry, can't type the date.

It will be amazing to have him home, to have all my children under one roof, to cuddle him in our own room, to not drive back and forth to the hospital every day, sometimes three times a day depending on child care and school stuff and such. I am excited, happy, relieved, grateful. All of that. So so so much. I am also - please excuse the psychological jargon here - Freaking Out. How on earth will I do this? I have already covertly tried to get the home phone numbers of some of my favourite nurses because really, they could probably stand to do some babysitting on the side, don't you think?!

So the next while brings us a battery of pre-discharge tests and preparation. Samuel has audiology and ophthalmology appointments and an echocardiogram and an ultrasound. The echo is the only one that might delay our discharge as there may be medication weans indicated that are best done in hospital. Otherwise, Samuel will be seen regularly in the the diaphragmatic hernia and respirology clinics as an outpatient and we have a pediatrician in the community who will follow us closely.

The ultrasound on Monday is to check on the blood clot he got in his femoral line. He has had subcutaneous injections of Enoxaparin (a blood thinner) twice a day for three months now. His teeny thighs have filled with pin-pricks and bruises and little cysts. I would so like for him to get to be done with that. And I would like to not have to keep poking my baby once we bring him home. So I have a few extra prayers right now that the blood clot is resolved.

There has also been the teaching - meds, NG feeding, physiotherapy, oxygen, etc. - that I've been receiving. At the time, I do these things and think, "Yea, I can do this. Stick a tube up his nose and into his stomach, hang his feed and calculate the drip and keep him upright for an hour so he doesn't reflux, flush NG and equipment, check stomach contents for tube positioning, push a med through his tube, hook up portable O2 and check the flow and then head out on the town. Add in some physiotherapy stretches for his core strength and development and some visual stimulation and some occupational therapy stuff for his gibbly hands. Badda-boom badda-bing."

Then I think about doing it at home with three other boys needing me and making dinner and entertaining kids through the summer. And doing it in the middle of the night instead of doing that other frivolous nighttime thing I try to do called sleeping. And doing it without a nurse standing nearby to help just in case. And I revert to Freaking Out. Then you may hear the sound of a wail echoing into the distance; that would be me falling down the Anxiety Rabbit Hole. What if Samuel gets a respiratory infection and dies or reherniates and needs more surgery or has a fluid imbalance that affects his heart function and makes him have a stroke or - my personal favourite - what if after all of that he's survived I drop him on his head?!

Do not fear. My rational mind seems to be able to take hold of my what-if mind to pull me back from the edge of the Rabbit Hole. Most of the time. So saner thoughts prevail, such as "this is one tough little dude" and "I have learned that I can handle things that I never thought I could handle" and "one foot in front of the other" and "be in this moment."  

Here are a couple of photos that I gaze at endlessly. We were changing his NG and nasal prongs and I got to see my baby's face free of all tubes and tape. Aside from the barely visible scar on his belly, there is nothing here to remind me of Samuel's struggles. (And isn't that scar amazing? Can you believe they got his digestive organs out of his chest and built him a diaphragm through that incision?!) There are times when I get to be in this magical well-baby place with my Samuel.

Samuel getting his hair brushed by nurse Jaclyn (to calm him because we just ripped tapes off of his face) and chilling without tubes.



A bit blurry but.... YUM!!! Don't think that I don't dive into that little neck and do some mama smoochin' on a regular basis.



Sometimes I re-read the pregnancy part of the blog. Although not in the best shape of my life (gah!), I am recovered physically and so I forget how hard it was to do simple things like reaching to get laundry out of the washer or walking (waddling) to the van. Sometimes I need to remind myself that it was real, that they all really predicted that he would die. Seven perinatologists (including a CDH specialist from Toronto), a pediatric surgeon, three neonatologists, a respirologist... The only encouragement really was from my obstetricians and one of the nurses who were looking after me instead of focusing on baby. 

Every so often I think maybe I exaggerated or misunderstood or something because how could it be so different from what has happened?! Thank goodness for my friend Lori who came to some of those appointments and can say, "No, it was real. They were kind but they gave you virtually no hope." Nurses have commented on this one little outfit that Samuel has, how sweet it is. I don't tell them that it was the outfit he was meant to wear when he died, when we got to hold him and take pictures and then lay him to rest.

Someone asked me the other day if I was angry about all that and I said no. I don't even really think about it - no time to be looking backwards. Besides, one of those doctors is the neonatologist who saved Samuel's life in the NICU. He was there when Sam was born and I will never forget him saying, "We have life!" and proceeding to intubate. Another was the surgeon who repaired Samuel's diaphragmatic hernia, who came to see us at the NICU when he was just a few hours old and who calls him her Sam. Those doctors gave us the best guidance they could with they information they had. Then they showed up and saved him and shared our journey and delighted in our love for him. 

Really, based on the medical information, Samuel shouldn't be here. But something happened between the time of that MRI and the time Samuel was born. Something happened to let him develop a functioning lung on the left side where his intestines, stomach, spleen and liver grew. Something happened to protect his squished up heart and his right lung so that he could use them to be the little eating, pooping, smiling, kicking, coming-home-from-the-hospital baby we have now. Science is amazing AND it is limited.

And from this place, I laugh in the face of Freaking Out. Ha! Begone, Freaking Out. There is no room for you here. I have my baby and my beautiful family of six. I practically float around that hospital some days. I carry my baby in the Bjorn with his oxygen tubes hanging down, pulling the big heavy tank behind us and I feel like the happiest, proudest mama in the world. I sit and hold him and smell his head and I cry for the grace that is there in my arms. More than ever before, I am awake to the pain and the beauty that is this world. I wouldn't give that up for anything.

Sleeping in his bassinet on Home Visit #3.

Heh heh. Brothers, you are funny!

Hanging with Jakey and showing off my fancy new thumb splints courtesy of OT.

Samuel's favourite toy, aka Alien Guy.