James slept well at the hotel all things considered and we were grateful for the rest. Chris took James for a walk, letting me get a little extra shut eye too which was so very appreciated. When I woke up they had just come back with breakfast in hand. After taking our time packing up we checked out of the hotel, dropped our bags off at the front doors and headed out for a walk. Of course just as we were leaving I realized I had seemingly lost three items and started to freak out. We had transferred things between bags so many times on this trip that it was bound to happen but I'm weird and have a hard time concentrating when something "isn't quite right". Chris had helped me pack so I couldn't even think back to where I may have seen it while packing and I was going nuts! It's a weird quirk, but it just nags at me! But Chris was able to talk me off of my crazy ledge (which was augmented by the fact that I was still pretty sleep deprived) and we went for a walk (for the record two of the three items showed up before we even made it to the airport, and the last one, a teething ring, we found when we unpacked on Wednesday).
We got to the airport with plenty of time to spare so we walked around and did our best to keep baby happy. We were continuing to give him Tylenol and Advil every three hours but accidentally missed one dose and boy did he let us know. We've become very familiar with his "I'm in pain" cry and he was one miserable little boy. But we gave him his Advil and calmed him as best we could until it kicked in. Fortunately this happened BEFORE we got on the plane. James definitely isn't a screamer on the plane, but he makes you work. He loves to look around and make friends, but he does not like sitting still so you really have to work to distract him and keep him entertained. He's only 6 months old but we're already starting to see the start of mini-toddler-temper-tantrums. This kid has a flare for the dramatics too so I feel like we're going to have to really earn our parenting badges.
When we got home Auntie Connor (not my aunt, but James' aunt :) was waiting for us. And even though it was only 10pm by the time we got home we were exhausted and basically went straight to bed. What a day.
Getting Back To Normal
Since coming home we've had to continue with the Advil and Tylenol to keep the pain at bay, but he does seem to be getting better since we've been able to stretch out the period between doses to 4 or 5 hours most of the time now. And while we've been really careful with how we handle him (which is a lot harder now than when he was a new born... there's a big difference between 7lbs and 17lbs!) he has been rolling over on his own for tummy time already. It's not often, and it doesn't last very long, but it still amazes me that he's on his tummy only a week after heart surgery.
We've started trying solid foods again which has been messy and fun too. Today was bananas! Most of the time it's in the mouth, slosh it around a couple times, then spit it out, but I'm pretty sure I coaxed him into actually chewing and swallowing a few pieces! And while he can't be submerged in water yet (still waiting for his chest incision to heal up some more) we have gone over to grandma and grandpa Hart's house a few times to splash his toes in the pool to cool down.
Oh, and let me just take a moment to say that I have some of the greatest new friends. I had gone to The Nest Family Centre for prenatal classes while I was pregnant but over the past several months have been going every Wednesday for their breastfeeding support group. Breastfeeding seems like it should be such a natural, easy thing to do, but it's harder than it seems! Not only have I learned all kinds of great bits of information that have helped me with feeding James, I've also grown close to the community. I look forward to seeing these mum's and their babies every week and love seeing James make new little friends! These ladies have always blessed me with love and support in class (they always ask about how James is doing), but I was blown away when they started sending me messages, commenting on instagram posts, and emailing me through the blog while we were away. Then they took it a step further and arranged to bring us meals since we've been home to help make things easier! Thank you Dominique for setting that up! I could cry with how much all your kindness has meant to us. These ladies are the real deal and I am so glad to have met them.
The Cardiology Update
Last night James slept SO well... perhaps a little too well. He got up at 6:30am as he usually does, and normally he's bright eyed and ready for the day at this point, but I brought him back to our bed after changing him so we could have a lazy morning snuggle as a family... and he fell back asleep while nursing. I was side-lying and had the pillow wedged behind my back to keep me supported... until Chris decided to roll over with the pillow in his sleep! Ugh... ok, time to readjust without waking up the baby. I got myself repositioned with Chris now being used to support me... until he moved even further! Seriously! So I shift around and manage to get some support by leaning into his elbow. Not the most comfortable, but I needed something to lean into so I could try to get some sleep while still allowing James to eat/sleep. AND HE MOVED AGAIN! UGH! And after 5 minutes of holding myself in a static position I gave up and checked my phone... it was 8:30! How did that happen?! James NEVER lets us "sleep" (well, Chris slept! lol. I earned those quotation marks!) that late! But that meant we only had 30 minutes to shower, change, and eat before we needed to leave for our cardiology appointment! I didn't even bother washing my hair, so after some dry shampoo (an absolute necessity for every new mom!) and a fresh face of makeup, we were on our way.
We walked into the Variety Children's Heart Centre and were greeted by a friendly chorus of hellos by three different people! I'm not sure if that's a good or bad thing... It's great to be greeted so pleasantly! But it's probably not a good sign when the entire staff at the cardiology clinic know you that well. lol. Either way, it was nice to see everyone and even James is more at ease there now since he recognizes so many of them. After all our hellos and giving everyone the update on how things went in Edmonton we waited for James' echo. Dr. P. came in to finish up the echo personally - and as an aside, gave us a great tidbit about suggesting to future sonographers to get shots of his pulmonary branches by looking up from the ribcage rather than down from the throat since he was much more cooperative to that approach (we've had issues in the past... long story). Anyway, this echo gave the cardiology team a chance to see how things had settled now that he's had a bit more time to heal. The heart enlarges a bit during surgery and recovery, so you have to wait until it's had some time to rest before you can get a real sense of the surgeries success.
What they found was a mixed bag of results. The surgery had worked. The augmentation had reduced the severity of his pulmonary stenosis (narrowing of the pulmonary artery). Unfortunately, it didn't reduce it as much as we had hoped. It looks like on the spectrum of things we are now sitting at the low end of moderate for pulmonary hypertension. The thing with hyper tension is that it can't get better on it's own. If it stays exactly where it is now it's obviously not ideal but it will be manageable for James. However, if it progresses he will need surgical intervention again. We had been warned of this in Edmonton but at the time it looked as though that would be a bridge with would maybe cross in 3-5 year... now it's looking like that may happen sooner rather then later. We go back to cardiology in 3 months to have another look at things to reassess the situation.
3 months... this is a very familiar scenario since this is exactly the conversation and time line we were given at his first cardiology visit after the d-TGA switch procedure. Tonight while we were putting James to bed I turned to Chris and confessed to him that I was starting to get the impression we may never be "done" fixing his heart. He looked at me, pulled me into a hug and said "I'm getting the same feeling. But there's no one I would rather do this with than you. We have a pretty cute baby and he's worth every moment". He gets me. He really, really gets me. He always knows what to say. It's not easy, and it's definitely caused some moments of tension, but we've come out stronger than before. Most of the time the arguments aren't even about James heart issues directly, but just a result of the stress that we both feel whether we admit it or not. But we love each other, are committed to each other, and are willing to work through the tough stuff, especially since it makes the good stuff that much sweeter.
Once again, our journey continues on with an ellipsis rather than a period. I almost feel like out story was inspired by Terry Pratchett some days since he just didn't seem to believe in chapters! (There are no proper chapters in his books. He thought you should just stop when you needed a break and then keep going... but it makes it hard to remember where you were when you're notorious for dropping your book mark!). So, I'll continue to update along the way with the ups and downs of our little rollercoaster of life.
...