Bonding with Sadie

It's CHD Awareness Week, which I have been actively involved with for the past three years. This year, however, I did nothing to prepare, and I have to admit, I've let the CHD Blog run far behind in posts. But it's for a good reason. I've been bonding with the very reason that brought me into the nightmare world of CHD.

Having a baby you can't hold in the early days has a huge impact on your ability to bond. Ask any parent of a premie who's hospitalized a long time, or anyone who has a child with a chronic, life threatening illness in the early days. Sadie missed out on those early caresses - I couldn't touch her for more than a week beyond brushing a fingertip across her hair without her heart racing. I didn't hold her until she was almost three weeks old. She could not tolerate touch, really, for months, unless she was bundled tightly to minimize it, and bounced to draw her attention away from the fact she was being held. It's difficult to bond under those circumstances.

And that's part of the reason I have been such a 'warrior' about Congenital Heart Defect Awareness. I felt so robbed. If she had been diagnosed, as she SHOULD HAVE been prior to birth, I wouldn't have lost as many days as she stabilized. I have felt that the lack of knowledge, the lack of simple tests, had cost me the bond with my baby. And I was pissed about it. And when I get pissed, I take action to make changes. I don't know what caused this to be my genetic makeup, but it's what happens when I'm faced with something I can't understand, or I think is wrong, or I feel I can make better.

I always felt so awful about not having that special bond with Sadie that I had with Katie in her early years. I craved those moments I'd had with Katie as a newborn - when she'd gaze up from nursing into my eyes and just stare. How she'd snuggle into me and fall fast asleep. How she smiled in those early weeks. With Sadie, it just didn't happen. Every day was a battle. I was, to be honest, disappointed. Let down. Sad.

That's not to say I don't love Sadie more than I can express. I love her so very, very much - coming so close to losing someone makes you realize how much you want them to be in your life. I would content myself with watching her sleep (when she did). Time marched on, and month by month she became a little easier to deal with - allowing me to touch her without crying. Eventually making eye contact. Hugging. Kissing. She became a fairly normal toddler - full of moxy, highly temperamental, but funny and sweet. Still, we didn't have "that" bond.

All of a sudden, three and a half years later, it has finally happened. In fact, I can almost name the moment. We went out on our first mommy-daughter date to the movies a month or two ago, and we sat. We chatted. And the communication began to grow. Now she's attached to my hip (literally, she's sitting her on the couch beside me, on my hip as I type), snuggling constantly and telling me how much she loves me a hundred times a day. And each time I tear up a little bit, so thankful for these moments that were so long in coming.

As for CHD Awareness, I will continue to promote the need for better testing - simple tests can save lives, and maybe even just one mom can have more of a bond with their baby than I was able to have. So I'll champion it. But I won't be putting the hours into it this year. It is time for me to step back and be thankful. To hang up the gloves I've had to keep on to fight for so long for Sadie, and just enjoy her and revel in my new found bond.

Double Guessing Yourself

It's funny the timing of things...

When my kids get sick, I have a tough time gauging how really sick they are. If there's a fever, I usually take them into their pediatrician for a look. I often feel like a hypochondriac. What can I say, I've developed a distrust of the medical community in general, which has been combined with my tendancy to worry. With reason (Sadie's many medical mishaps and oversights, Jason's recent brush with death), I know, but a worrier none the less.

There's a flip side to that. Being a rational person and recognizing the current stress levels and prior experience, I often discount my gut and ignore symptoms until situations escalate further than they should.

The past 6-8 weeks is a great example of what I'm talking about. The experience at the hospital with Jason left me feeling I couldn't trust the simple diagnosis any longer. I ended up taking Sadie in a few days after his initial visit - to the ER no less - because she had 5 or so similar symptoms to his presenting illness. Her pulse ox then was around 94. They said it was likely because she has a heart defect and had been sick. I dismissed the episode of being one of neurosis and exhaustion.

The kicker is, Sadie hasn't really been well since that time. She's been OK, still full of spunk, but not quite at full steam. She's had several episodes of labored breathing, but in conjunction with a cold, congestion or a nasty cough. She just hasn't seemed to shake it. I've noted three seperate times that her nailbeds were a bit bluish. I chalked it up to her coughing and congestion. I thought perhaps it was pneumonia, it wasn't. Bronchitis, nope. I had lots of ideas, but never once allowed myself to think about the heart as being part of the issue. Yet, inside, I've been in turmoil, worried that something bigger is being missed. I tell myself it's because I'm surrounded by CHD-related things right now, and over vigilent with her. T

Today was visit #6 in 3 weeks for Sadie to the doctor. We saw one of our favorites, and she took a lot of time, checking her pulse ox, listening to her heart and lung function, asking the right questions. She felt Sadie was, indeed, experiencing periods of cyanosis ("blue" syndrome - when the body doesn't oxygenate as well as it should. Which shouldn't be happening based on her reports from the cardiologist. (Guess who's switching cardiologists after we're over this hump?)

An uneducated guess is that perhaps Sadie's pulmonary hypertension was never really resolved as her cardiologist told us over two years ago (without checking for further symptoms no less). I always ask for her doctors to check at her pulse ox at well visits (it's a simple, fast and "free" test), and usually it's 98-100, but when she's ill, it easily drops to lower 90s. If she's really sick, it's in the upper 80s.

I know it's nothing "serious" compared to the many challenges some of my friends face. I feel silly, to be honest, when I worry about Sadie's heart. My heart friends have children who on a GOOD day are in the upper 80s for sats. So I have a hard time feeling urgency with my child, who is often called "fixed" in the CHD community.

I feel like this is a bit of a push from above. A reminder that I'm on the right track in working to create some change for CHD patients and their families. And an even more poignant reminder to trust my instincts as a parent. To calm the brain, and let the gut do the talking when it comes to their healthcare.

Side note - I really missed Lobby Day today!

The Operation Sadie Had

OK, two posts in one night, moments apart. But I just came across this on a fellow CHD mom's blog and had to post. This is the surgery Sadie had in order to survive. Hers was not as simple as the Arterial Switch Sadie underwent, as in addition to TGA she also had two holes in her heart (ASD and VSD) to repair, plus complications with lung issues before and after.

Warning: NOT for the faint of heart, the squeamish or those that freak out over surgery videos (That means you, Mom!). This is graphic.