Friday, December 3, 2010

Finding my way to normal

Being a parent of a single ventricle kid is, well, different.

You spend your child's first months of life literally holding your breath. Just waiting for that Glenn to get here. The time before the Norwood is, honestly, just a great big blur. You have a tiny newborn child you hardly know and you're pretty much 100% reliant on the doctors and nurses to tell you whether there is something wrong with your child and how to fix it. You're hoping and praying this child you've hardly bonded with (if you've even bonded at all - it's hard to explain if you haven't been there, but you're really torn between loving this child (of course you love them, they're yours) and wanting to distance yourself since you know there's a distinct possibility you will never bring this child home from the hospital) will make it.

Then, if you're lucky, you make it home from the Norwood and you're in the "interstage" as it's referred to, the time between the Norwood and the Glenn. The interstage is the riskiest time for a single ventricle child, the time with the highest mortality rates. I don't know about other hospitals, but I know at CHLA, your odds of making it home from the Norwood (90% survival to discharge) are actually better than your odds of making it from that point to the Glenn (85% survival from Norwood discharge to Glenn). That's a really sobering statistic. Kids during the interstage are just plain fragile. They're hospitalized for missing more than one feed at a time or because they have a runny nose, and they pass away from colds or the flu, things that a heart healthy kid wouldn't bat an eye at. During the interstage, you're VERY closely followed by a cardiologist, and you, as a parent, are monitoring absolutely everything you can. You're monitoring "ins and outs," checking sats regularly if you have a pulse ox (many docs will send you home with a prescription for one) (we had Bodie on continuous pulse ox overnight and during daytime naps), you're weighing daily and consulting your cardiologist if more than a couple of days go by without weight gain. You're likely administering a crazy amount of meds. You're watching your child like a hawk for the slightest change in feeding patterns, or change in color, or change in sleep patterns. All things that change on a daily basis for a heart healthy kid, but which can mean a shunt is clotting off or narrowing in a post-Norwood child. It's mind boggling the amount of precision and effort required to keep these children alive between the Norwood and the Glenn.

Then, if you're lucky and make it to the Glenn, the whole game changes. Post-Glenn, kids are generally incredibly stable. They don't go downhill quite so quickly, often giving warning signs for days, weeks or even months before things reach critical levels (as opposed to post-Norwood, where you can literally be talking hours). Instead of seeing the cardiologist weekly (with bi-weekly echos), you're seeing them monthly, bi-monthly and eventually even less frequently than that. Weight gain can often still be an issue for these kids (they're cardiac kids, after all), but you don't need to monitor food intake or weight as rigidly. A cold won't necessarily entail a hospital admission. Yes, single ventricle kids by definition are "medically fragile" and doctors will be cautious because of it (as we saw when Bodie was almost admitted for a possible pneumonia), but it's just different after the Glenn. They're, for the most part, "normal."

Emotionally, I'm there. I'm no longer expecting the other shoe to drop. I mean, I know it's always a possibility (there simply are no guarantees with cardiac kids), but I'm more successful at pushing that thought to the back of my mind rather than letting it permeate my outlook. I figure we'll deal with issues when they come up and can monitor him super closely again if that happens. In the meantime, we can let Bodie be a normal kid. We won't keep him on house arrest (we never have other than immediately post-op), but we can certainly be a little more lax now in terms of letting him have playdates and get out there and just enjoy being a baby). I am just trusting God for Bodie's future.

But practically speaking, I'm not sure how to get there. I am still putting Bodie on continuous pulse ox at night, even though he's consistently been satting in the low 80's for over a month now, with the exception of when he's sick. I am still weighing Bodie daily and panicking when he has a few days where he doesn't gain. And I am still printing out my excel chart and putting it up on the fridge every day to mark, down to the ounce, how much he eats, how many diapers he puts out, etc. So my question is how to get from crazy-hovering-have-to-monitor-every-little-thing to normalcy? I don't really know. Life was in such a crazy state for so long (remember that Bodie didn't have his Glenn until he was 7 months old, so we had a long time for that to become our regular routine). I realized last night as I was climbing into bed at 12:30am (and decided to wake Dusk up out of a sound sleep to discuss this, bless his heart) that it's a habit and one that I need to break for my own sanity as well as my family's well being.

I know a lot of fellow heart moms read my blog. Any advice for how to get from Point A to Point B? I'm getting there - today was the first day I didn't put the excel spreadsheet on the fridge. Baby steps. Would love some other recommendations! Other than that, please just pray for me and our whole family as we adjust into our new normal. :-)


  1. What a beautifully and accurately written post, Amy! You've summarized the life of a new heart family so well! I'm going to link to this post on my blog because I've been wanting to give family/friends a tiny glimpse into our "new normal" and this does just that! As for getting from Point A to Point B, unfortunately I'm not much help there. Hubs has always been the "crazy-hovering" one in our family, and he's still working through these same issues as you. I'll let ya know if we figure out the magic answer! In the meantime, I am ECSTATIC to see how incredibly well Bodie is doing! Such a cutie! And your post on his teeth cracks me up... Chase got his bottom 2 teeth around 6 months and then NOTHING for 3 or so months! Now he's got his top 2 middle ones and some of the side ones working their way through. I can't wait to see Bodie's new smile once those "fangs" make their way in! LOL!

    Heart hugs!

  2. Hello, I want to ease your mind a little bit ... I'm a 28 year survivor of SINGLE VENTRICLE, Transposition of the Great Arteries, and Pulmonary Stenosis, I had my first BT Shunt at 6 weeks, then my 2nd at 2 years, and my Fontan done (which combined a most of procedures you are talking about I was an 80's CHD baby) at 4 years old ... please know I know this is a trying time, and I totally understand the fear you are feeling, because my parents went through it ... they journaled to me daily, and everytime I read them I cry my eyes out, my mommy of course refused to believe I wouldn't survive, and my daddy on the otherhand was more realistic begging me in every entry to make sure to wake up in the morning, it took years for them to "ease" off and realize I was a CHD child but I was like everyone else ... after my Fontan, a lot of worries and fears were eased, I have only had to have a few minor (non-CHD related) surgeries and I did get a pacemaker at 9 years old (have had it replaced once at 22!!) and I'm today doing wonderfully. I have a wonderful boyfriend who has shown me more love than I could have ever imagined, and I have a great relationship with my "LifeSavers" (mommy and daddy who are still married after 30 years and everything we've been through) ... I know you wanted Heart Parents to comment (and I am one as well but I'm an Angel Mommy my daughter was born sleeping a year ago yesterday due to a few complications) but I figured someone who had been through this, gotten where you want to be, and would love for you to know that your sweetheart has a great chance in this day and age, I know all the medical stuff can be scary, overwhelming, and trying but please know it's gotten a lot better ... I was born with a 2% survival rate (that's a 98% chance of not making it where I am today!) the stats are going down ... we are surviving and even better we are thriving ... and I hope when you read this you smile because we can do this! Blessing and tons of Heart Hugs!! I'm here anytime you want to talk!!


  3. I'm neither Heart Mommy nor Heart Child, but I do have a picture of Bodie and another baby with Cerebral Palsey as my desktop wallpaper at work. Each day (and throughout) I trace these boys with my mouse and offer up praise and thanksgiving. I ask The Lord for continued health and family strength. Amy, you and I will probably never meet, but I love you and your family and pray for you constantly.

    WAIT on The Lord, be still in His Presence and know that His plans are greater than our plans, and His thoughts higher than ours. He never disappoints, He is always faithful.

  4. I cannot tell you the point where I eased up a bit. I think you gradually do it at your own pace. As you said, you aren't as bad as you used to be and that will continue. I have to admit...I have bad days (crying, worrying, etc) but those are fewer and more far between. Though I would say I go into "super-extreme" mode when Lj starts to show signs of being sick. "are those eyes red because he is tired? OOORRRR did he just pick up a cold...wonder what his his pulseox looks like...does it look like he is breathing harder/faster??" But I think with every one of those, I ease back a bit. I wish I had some super advice to get you over it...or that there was a magically 10 step program...but honestly, I haven't found it. I am on semi alert now that flu season is starting.....LJ's last bacterial infection landed us in the hospital for four days......

  5. my darling amy.

    we are ALWASY praying for you guys.

    loads of love to my bodie and you all.

    nairi and family

  6. Amy, we are praying for you on this...Steve, Rebeccah, Elsie, and Nora

  7. This was a great post Amy! Oh boy, where to begin on giving you advice. Obviously with my son, Logan, I don't have the worries of having a single ventricle child. However we have our own set of big worries, fears and things to stress about. It is definitely very hard to let go of some of that. Logan is four and I still have those days where something triggers my fear and I find myself paralyzed in panic mode. I'm not sure that is something we ever really let go of. I think we will always worry, obsess and have those little fears but I do think they we learn to adapt to them. If you think of how we have managed to survive through some very traumatic times up to this point and still function then we can continue to find a way to LIVE on this journey. We know there will always be speed bumps along the way with the occasionally scary curve ahead but I have faith that in between we can find smooth sailing....and most importantly hope for a future for our kids.


  8. Yeah, I have no clue. We are 4 1/2 months old... still in the hospital... hoping to go home and wait for our Glenn in the spring. (we were supposed to have our glenn in October but she turned blue in the OR, so they changed out her BT for a fancy smanshy new and bigger Sano shunt to try to keep her going for a few more months...)

    Home sounds REALLY cool and REALLY scary right now. I think it's normal to be a little paranoid about things. It IS our normal. And I think it will just take time. And probably some time where you really just don't HAVE time and forget to do it one time... then another time.. and slowly the habit will go away. That's how it SEEMS it would be for me anyway.

    Right now, I'm experimenting with excel charts:-) Doing the preps...

  9. Thanks for your sweet comment on our blog- This was a great post too! I started relaxing after Maddie turned one...I don't know if it was the milestone of making it to a year or what,but right before she turned one, I threw away the charts, quit hovering over her as much as I did and just let her be. I do have to admit that I did have some "withdrawls" from stopping all of the habits you mentioned but felt a new-found freedom and more normalcy came into our lives. Our world didn't revolve around measuring how much she ate and stressing before I went to bed on whether I should force feed her some more ounces since she didn't get enough that day.

    You'll know when it's time. Maddie's cardiologist actually urged me to quit obsessing and let her be a kid. It was some of the best advice I've gotten along this journey and she did great, even without me recording every hiccup :)

    Nice to "meet" you, your children are beautiful and I'm happy to read that Bodie is doing well :) Take care and heart hugs!

    Katie (Maddie's mom, HRHS)

  10. Hi! First of all, your sweet Bodie is just DARLING!! I am so glad he is doing so well. My son, Field, is 6 months old and has a single left ventricle (Double Inlet Left Ventricle). We have our Glenn next month - January 6th. This post is so well put and OH SO TRUE! We are still charting how many ounces Field drinks, I am still pumping (love your post about the pump by the husband and I are going to take a bat to the pump when I finish pumping for Field. We'll buy a new one for our next baby.:), and worrying about every change in his sleeping, eating, etc. I LONG for the day when I feel like it's ok to stop charting and when I don't worry about his eating and weight. I know it will be a good feeling. Nice to "meet" you and heart hugs to you and your beautiful family!

    Lisa Johnson