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.

What the heck is CHD?!

I had an email conversation with a member of the Mended Little Hearts group this past week, and mentioned that I did not even know what "CHD" or a "Congenital Heart Defect" was until several months after she had been home from the hospital and her heart had been repaired. The other member replied that she had never heard it called "CHD" either, until the last couple of years. Interestingly enough, she is an adult survivor of CHD.

So why is it that we don't know what it is our kids have? We are given a medical diagnosis for missing chambers to underdeveloped (or missing) valves; from narrowed blood vessels to unconnected arteries. We identify ourselves as "a parent of a TGA child" or "an adult with tetralogy of Fallot" - not as part of the larger Congenital Heart Defect Community. Perhaps that is why we are so disconcerted in our efforts to join forces and create an effective awareness campaign.

When I was in the hospital with Sadie, I was desperate for information on her condition. I spent hours surfing the Internet for stories of adult survivors, for parents who could relate to the horrors of open heart surgery with their infant, and for inspiration. Never once did I Google "CHD" or "congenital heart defect" (both of which bring up tons of links I could have used!). I looked up "TGA," "Transposition of the Greater Arteries," "open heart surgery" and "pediatric cardiology."

I suggest we start to educate the social workers (who often have extensive interaction with the parents and provide links to support groups) on the importance of being able to identify CHD as being the tie that binds the "broken heart" community together. What do you think? How can we create a better way for newly diagnosed CHD families to find other heart families, websites, resources and information? Send your thoughts to learnaboutchd@gmail.com or feel free to post a comment.

Overwhelmed

Day 1 of my personal CHD adventure in advocacy, and I'm overwhelmed. In the last 48 hours I've received about 40+ emails from parents of CHD children and some of which have lost children to these series of defects. I had planned a nice commentary for my first blog of this month long venture, but can't seem to find it in myself to finish it today. So, I'll keep this simple and share with you some of the facts from the Children's Heart Foundation. I have not had time to verify all the facts they list, but from the research I've done in the last week, most seem to be right on target.

• CHDs are America’s number one birth defect, affecting nearly one out of every 100 births, or 40,000 babies a year.
• CHDs are responsible for one third of all birth defect related deaths, making CHD the number one cause of birth defect related deaths.
• More than 91,000 life years are lost each year in the United States because of CHDs.
• More than 50 percent of all children born with CHD will require a least one invasive surgery in their lifetime. Twenty percent of these children will not survive past their first year of life!
• The cost for surgery alone exceeds $2.2 billion a year!
• CHD research is grossly under funded. Pediatric cancer research is five times higher than CHD research although twice as many children die from CHD each year in the United States than from all forms of childhood cancer combined.
• Research has already made a difference in the lives of thousands of children and their families. In the last decade, death rates for CHDs have declined by almost 30 percent because of the advances made through research. As more children's heart abnormalities are treated, research is needed to meet the needs of CHD patients as they reach adulthood.
  

There, the facts are laid out. Next up... coping with a tantrum thrower, ways that CHD has changed my perspective on life and what you can do to make a difference for a child or family facing CHD.

Thurs Night - The eve of surgery

Sadie has had a busy day. The morning started out with the replacement of her arterial line in her neck. They had put it in yesterday evening, and had not sutured it, so it came out a bit. They had to come in and redo it - this time with 3 sutures to ensure it didn't come out during surgery. I was in here for the procedure, which probably wasn't smart on my part, but I haven't wanted to leave her all day. Right as the dr was finishing up, a nurse came in and said Katie was coughing in preschool and had to leave because it sounded bad (she's in the preschool here at the hospital for now - it's for patients and siblings 3-5). So I freaked out and got over there, just to find out they'd sent for the wrong parents - Katie was fine (thankfully - I was in tears thinking she was getting sick too).

I left Katie to play longer, and got back to Sadie's room to find out that an echocardiogram was next on the schedule. They were searching for her coronaries to make sure that they looked good for surgery tomorrow. The echo guy said he thought they looked good, but when quized further said he couldn't get a good picture of the left one. He left with a promise that I'd know more before end of day. It's officially midnight, and no word on that.

Meanwhile, we've been looking deeper into the situation regarding Sadie's kidneys and whether or not she should get the preventative dialysis tube. The surgeon says no, but several drs here disagree, as well as some nurses. I addressed it to their (the cardiology surgical team's) nurse practitioner who told me they'd made the decision not to do it. I don't feel good about it, and they promised I'd speak to the surgeon today, but haven't seen him. In fact, I've never met him. It makes me even more nervous. I know he's crazy busy, but I'm worried and no one seems to be addressing the fact that we, as parents, have the right to know the reasoning behind it all. The NP said that they talked to some renal specialists, and they concur... but I still want further reassurance.

By this point I had a killer headache/migraine type thing going and took Katie to McD's House for lunch/laundry/nap time. Don't even get me started on McD house - that place is terrible. Once this is over with, they'll be getting a piece of my mind. We want to go to a hotel, but haven't had time to really look into the best place to camp out for the coming weeks. Maybe tomorrow while we await news and have nothing better to occupy our time.

Katie's been a saint during all of this, and loves her little sister so much. She draws these adorable pictures of Sadie - gives her black hair that sticks up all over. :) Tonight I had to call Mom and Dad to get her, though, because I just don't want to leave the hospital.

Tomorrow AM first thing is surgery, and I'm nervous. I eat whenever food is put in front of me, but can't really get into it and would forget if not reminded. My stomache is a mess and I can't seem to focus on anything. I'm teary, but can't get a really good cry in. I'm - in general - a wreck. I can't wait for it to be overwith. At the same time, I dread the thought of what she'll go through tomorrow and in coming days. I wish I could take it away from her.

Sadie was much more alert than I've ever seen her since I've been here tonight. At one point she had to be suctioned again, and I was beside her, watching her cry, which tears me up. Then she reached out and grabbed my hand - hard! I couldn't believe it, and I'm taking it as a sign that things will be ok tomorrow. A short while later she opened her eyes and really looked at me (a who-the-heck-are-you, drugged daze, but whatever, I'll take it). It's those little things that keep me going, and give me faith that she'll be ok through all of this.

Please stop and take a minute (today, now) to think of Sadie and send some prayers/positive energy her way. We expect her to be in surgery from about 7am - 3pm. The first hour will be sedation, second hour will be hook up to the bypass (lung/heart machine) and third will begin the surgery. She will have the transposition reversed, coronaries reattached, ASD (atrium hole) plugged, VSD (ventrical hole) plugged and her ductus tied off, as it has not closed. So much stuff for one little girl, but she's tough and a fighter, and we know she'll be ok.