Charlie's Blog

Welcome to a blog about a boy with a rare heart disease, his mum and dad, and his adventures.

Friday, March 20, 2015

Double Duty

I say this every few times I post, but I really didn't know so many people read this blog and were interested in how Charlie and us are doing. It warms my heart/makes me feel awful that so many people read this, and that I don't post often enough! So, tonight, a double update. First, Elizabeth's arrival:

Should have been posted:

March 3rd, 2015

Seven days ago, Elizabeth Leslie Thomas entered the world. The birth did NOT go as expected but I am super glad it went the way it did. I was induced the evening of Monday, February 23rd and by lunch on the 24th I was in full active labour. You know what's not fun? Having contractions in a car. I'm sure there were quite a few people who saw me grabbing the 'oh shit' handle of my Elantra as Matt drove me to the hospital, pressing my sweaty head against the cold window, who thought I was in the DT's from being a heroin addict or something. Got to the hospital, checked in, asked for my epidural. Seriously, that's how it went. Laboured a while longer, asked for my epidural AGAIN. The anesthesiologist was assisting in a 'complicated birth' (ohgodohgodohgod) so he'd be at least 45 minutes. 45 minutes later I asked again (how did I know it was 45 minutes later? Because there was a huge clock on the wall, allowing me to know EXACTLY how long each excruciating contraction was lasting. Lucky me.) and was told he'd be another 30 minutes. At this point, I looked at my nurse and said 'I'm not actually getting an epidural, am I?'. She assured me I was.

I was not.

At 3:20pm, I had two really intense contractions and my brilliant nurse decided to roll me on my side, lest the baby be stuck under my pubic bone. Sure enough, I rolled over body decided that was the moment Elizabeth should start making her exit. She was born at 3:34pm after 9 minutes of pushing. To look back on Charlie's birth, this could not have been more different (epidural/no epidural; laboured for 24 hours/laboured for 3; pushed for 3 hours/pushed for 9 minutes...). I was so irritated at the time that I was in that much pain, but in hindsight it was a blessing. I recovered so much faster, felt better directly afterwards and am proud of myself for completing it (like I had a choice).

Elizabeth was 9lbs, 2oz, and came out covered in goo. Evidence:

Goo-covered baby Elizabeth.
 I spent two days in the hospital and headed home.

These few few days have been lovely. She eats like a champ (although it bothers me I don't know how much she's eating...left over PTSD from Charlie's condition), sleeps well, only cries when she's hungry, and is generally very affable and amenable. She gained a few ounces in the first week home and I am enjoying her so much.

I honestly can't imagine she has DCM. Charlie was a crier from the get-go, as we remember. Elizabeth just seems so...normal! We have an appointment for an echo on Friday at Sick Kids, so we will see then how her heart is doing. Genetics don't come back for several weeks but an echo will give us a good first look. Fingers crossed.

Family minus one.

Falling in love.

Charlie was thrilled with his baby sister. Elizabeth was less happy with this pose.

Echos in the dark.

Now, today's news:

Unfortunately, all has not gone to plan. Two weeks ago, Elizabeth's initial echo showed that she had 'low normal' function, which was a concern. Had it not been for Charlie's condition and our genetics, Sick Kids never would have even looked at Elizabeth, and her low normal function would have remained her secret until it either resolved itself or she went down the path Charlie took. Our cardiologist asked us to come back for a follow-up in two weeks, which took place today.

Two weeks ago, as I said in my previous post, I was not at all prepared for Elizabeth to have a less-than-perfect heart. She was acting so much better than Charlie did at first - like a normal baby! - so when Dr. D. said her echo wasn't normal, I fell apart. 12 hours of crying ensued...and then I got my shit together and got on with life. I started assuming that yes, Elizabeth has DCM and our second child lost the genetic lottery as well, but that in two weeks we would see what the follow-up held. Worse case scenario, she is on medication like Charlie was only she never has to get as sick as Charlie to get a diagnosis and medication. I will not be caught unprepared like that again. I'd rather think of the worst and hope for the best, with no actual expectation of the better of the two options coming true. Turns out, it was good to abandon hope of a discharge from Sick Kids (but not abandon hope of Elizabeth's story turning out well, as I not only hope but insist be true).

At the follow-up today, her heart function was exactly the same as it was two weeks ago. 50%-ish (58% is in the 'normal' zone). Our nurse practitioner has put Elizabeth on a medication (one of the two Charlie was on from diagnosis onwards) with the thought that being proactive is better than having her heart decrease function and have to fight to get it back. This medication should stabilize her and help her heart - which looks completely normal as there is no dilation, unlike Charlie's heart from his x-ray at admission - gain some function over the coming few months. She'll have another echo in 3 months and some decisions will be made from there.

Charlie's heart upon admission. Elizabeth's heart LOOKS normal; Charlie's clearly did not.

We are feeling OK about this news. While it was not what we were hoping for, Sick Kids is on top of the situation, they are being proactive and there is no reason to suspect Elizabeth won't respond the same way Charlie did, in a completely positive way. That said, there is now the worry of heart transplant if she doesn't respond to the medication among other worries about her mental health as she grows older and the possibility of the medication becoming less effective over time. It will take some time to sink in and Matt and I are always waiting for the other shoe to drop - to have her energy decrease, to have her suddenly start eating less, to see her colour go from pink to white to grey, as Charlie's did. Heart Warrior parents often suffer from PTSD (I'm not kidding, unfortunately) so anything Elizabeth does that reminds us of Charlie's pre-diagnosis behaviour sends us into a tailspin. For now, though, our beautiful baby girl is sleeping after eating more than any 3-week-old should be able to, happy and pink and healthy and followed.

I'll update again after the genetics come in, which is the next interesting step. They are expected the second week of April. Thanks for reading. xo

Our princess (I'm aware this picture is ridiculous, but I still love it!)

Charlie on left, Elizabeth on right. Siblings much?