No Small Task
Preparing your child for their sibling’s heart surgery is no small task. First, let me preface this by saying we are relative newbies to this Heart Journey. Our experiences are limited as our heart warrior is still in toddlerhood. What we lack in experience, we have made up for with incessant research and connections made with other heart families. Those families that have paved the path ahead are a constant support and a wealth of information for us. This is my “paying it forward” moment.
Honesty, Truth, and BS-free
When our daughter was diagnosed with CHD I was 22 weeks pregnant. To say it was an overwhelming and devastating time in our lives is an obvious understatement. With her diagnosis came a strong possibility of a chromosome abnormality. We chose to keep this distressing information to ourselves and our immediate family until we learned more. We also needed to wrap our heads around what this would mean for our family. Our boys were 1 ½ and 4 at the time.
I could barely explain to my parents what was going on with our baby’s little heart, let alone put the proper age-appropriate explanation together for my little men. What if I broke down and couldn’t stop crying? What if they started crying? Long story short, we thought we were saving them from the agony we were feeling in that moment by not telling them. Truth be told, they most definitely noticed the hushed conversations, the many tears and the extremely distant parents. Lord only knows what they thought the reason was for our odd behavior. I hate to think now that they somehow felt our unhappiness was due to something they did.
Since that point in time, we have attempted to be upfront and honest with them. In words and concepts they can understand, we detail their sister’s current happenings. Sometimes it’s telling them how amazing her last echo was. Sometimes it means telling them that we are preparing for another heart surgery. No matter what, we want them to know what is going on with her. Even if it causes some worry and anxiety for them. We talk about it and when it comes up again later, we talk some more. I want them to trust that we aren’t hiding anything, as well as reassure them when they feel worried.
Preparing a Sibling
ChildLife and our Social worker were extremely helpful in preparing our boys for their sibling’s heart surgery. We really had no idea what to expect initially, what she would look like and what our first few days and weeks would look like. They provided us with great information and resources. We also found the “least scary” picture of a NICU baby we could and showed them where their sister would be living those first few weeks. We talked about how she would need medicine, how it would be given (IV), and that she may need oxygen (You know that funny thing that Papa wears to bed?) Also, we tried to give them a brief overview of everything they would see, just in kid-friendly terms. Talking about how long she may be in the hospital and how much Mom and Dad would have to be there was helpful too.
When it comes to the actual surgery itself, we’ve been given some pretty good guidelines based on their age. It is important to avoid telling them that she will go to sleep. Because when you are asleep, you wake up when something hurts. Instead, we tell them that a special medicine makes her close her eyes and she won’t feel or remember anything. We give them a very brief description of what they will be doing but avoid anything that sounds painful or scary. The last time she was in for surgery, we told them the doctors had to change out her old conduit (like a little pipe) and put in a brand new one that was bigger. That seemed to satisfy their curiosity. I know that as they grow bigger they will have more questions, and some may be difficult to answer.
First Glimpse After Heart Surgery
The very first time we took our 4-year-old in to meet his sister, I had so much anxiety. What if he was terrified of the alarms, IVs, tubes? What if he was repelled by the sight of her! I am happy to report that after he hopped up on his chair, he looked down at her with so much love in his big blue eyes and exclaimed “She’s beautiful!” Kids are incredibly accepting and even in her purple, bloated and critical state, he still thought she was the most precious little baby.
As we approached her discharge, I made sure to talk to them at length and on numerous occasions about how we needed to be extra careful with their baby. Only Dad and I were to pick her up! They couldn’t lift her arms up or get anywhere near her incision. We had to wash our hands, wash our hands, WASH OUR HANDS! And keep our germs to ourselves.
Now that we’ve been through a few surgeries and procedures, we have learned that we need to set them up for success by giving them as much information as possible. We tell them how long Mom and Dad will be away. We detail where they will be staying and what fun, exciting things they will be partaking in (thanks Grandma & Papa!) The night before surgery or a procedure we tell them what time we are going in, we call them when we leave her, and we call them when she comes out.
There are so many things that are beyond our control, so we try our best to prepare them for the unexpected as well. Our daughter has never gone in for a procedure or surgery on the first attempt. We have been bumped due to more serious cases or her own illnesses. I find the boys tend to be more accepting of these delays as it means more sleepovers at Grandma & Papa’s house! But it’s good to be upfront about these unknowns as well.
Involve and Include
We had very young boys when we brought their little sister home, but I was always able to find (make up) tasks that I desperately needed their help with! Thankfully, this little trick was learned while she was still in hospital. Her amazing nurses would always have an incredibly important mission for our boys when they arrived, and they felt so proud of themselves after completing it. At home they would fetch her medicine, grab a new diaper or help me listen to her heart. All these little things made them feel important and included.
It is so easy for siblings to get lost in the chaos of this incredibly demanding new life. A heart warrior demands so much time and attention, it can be physically and emotionally consuming. There were many times that our boys expressed that they needed our attention. Sometimes in the most terrible ways, at the most inopportune times. This new life will be an incredible lesson in balance. Balancing the needs of all your children. Let me tell you, it isn’t easy! Focus on what you can do, even if it’s the little things.
On the days we didn’t have time to spend hours with them playing Lego or taking them to the park, I would race home to make grilled cheese sandwiches with ice cream for dessert (we ate a LOT of ice cream). I would put priority on the most important part of the day for them, which was usually bedtime and make sure I was there to tuck them in. Extra books, extra kisses, extra good night giggles. I did my best to make them feel loved and important. During those weeks that I was also living at the hospital, it became critical to spend quality time with them when I could get it.
Whenever they came for a visit, I would leave their Dad with their sister and take them down for a cookie, chocolate milk or maybe even to pick out a new book at the store. Facetime and phone calls were made during any free moments in my day. I always try to connect as much as possible when I’m away from them. We also try our best to create a routine that will work most days, even if something crazy happens. Routines looked different, but this was our new normal.
A Break from the Hospital
During those very trying times, we had the help of amazing family and friends who would do shifts at the hospital so I could race home to see them without leaving their sister alone. To be honest, those moments with my boys were the best therapy/debriefing I could have asked for. Some days I would literally walk in the door drying my eyes and minutes later we would all be belly laughing about a new “joke”. If I let them, they could take me away from the stress, anxiety and gloom of hospital life, even if it was only momentarily. These little souls are really a key component to my surviving this journey.
Coping with Stress
As our boys have grown, we find that they have started to voice their concerns, dislikes and discomfort with the medical world. It is vital that we acknowledge when they don’t feel like seeing their sister or when they don’t want to be involved. When the alarms and IV’s or hospital life is all too much. I have heard many stories from seasoned heart families about their teenager that becomes aloof and seemingly uncaring when their sibling goes into hospital. As adults we can empathize with the feeling of anxiety and overwhelm one feels as they walk through those hospital doors. As much as we want them to be involved, sometimes it is more than they can handle. We need to respect their wishes too.
Give Yourself Some Grace
As I’ve stated, this journey is new for us, and we are still figuring things out as we go. There have been so many times that I felt like I was doing it all wrong! Sometimes these moments gave way to a change in how I would navigate the next hurdle and sometimes I just had to accept that I did the best I could in that moment. Isn’t this just parenting in general? Do any of us REALLY know what we are doing? So, be prepared to make mistakes (so many mistakes!) and forgive yourself for those miss-steps. Parenting is hard at the best of times and well, you are battening down the hatches for the worst of times. So, at your worst moments give yourself a break, accept your mistakes, and move on.
UCLA and Stanford Children’s both have fantastic information regarding preparing a child for their sibling’s heart surgery. Most hospitals have ChildLife and Social Work that can provide you with some awesome tips and tricks, especially if there is something specific you are dealing with (ie acting out, anxiety, or kid friendly explanations). Social work can direct you to counselors that specialize in this area, especially if you are feeling that something is beyond your ability to manage. PTSD is very real for heart families and it’s important to seek help if you need it.
I hope this post has you feeling more prepared and confident for the difficult journey ahead. We continue to ask so much of these little people. It is a journey they did not choose. But they too have so much to gain from this journey. Gratitude, acceptance, and love.
Also read: Preparing Your Toddler for Heart Surgery