I want to start out by saying that in no way, do I think I know what it’s like to have a child who fights for her life every day. In no way do I fully understand what it’s like to live in the CVICU (cardiovascular intensive care unit) for months at a time. What I can imagine is that whatever I am feeling doesn’t even come close to what the parents are feeling in these situations. What I do know for sure, is what I felt through the following story.
If you follow me on Facebook, I’m going to bet that you know a little bit about my best friend’s daughter, Riley Marie. You might be sick of seeing her pictures and updates about her health. You may be wondering why I post so much about her when I have two of my own daughters. The reason is very simple: this little girl has opened my eyes and changed my life in a way even my own two daughters couldn’t.
In case you don’t follow my Facebook page closely enough to know the Riley story: in a nutshell it goes like this. My best friend went in for her routine 20 week ultrasound and her baby was diagnosed with HLHS (Hypoplastic Left Heart Syndrome). Essentially, the left side of Riley’s heart was severely underdeveloped. My friends learned that their baby girl would, at best, have to have 3 open heart surgeries to strengthen the right side of the heart so that it would be able to do both sides’ jobs. There is no “cure” for this diagnosis.
Rewind to the day of the ultrasound. Imagine teaching your preschool class, waiting for your best friend to text you a picture of their sweet baby girl because you knew their ultrasound was that morning. Imagine, instead, looking at your phone and seeing a text from her saying, “She only has half a heart. It’s not good.”
My stomach churned and I instantly became nauseous as I ran out of the classroom to call her and figure out what the heck she meant by that. What did this mean for their baby girl? Were they going to have the baby? Was the baby going to make it through delivery? What did this mean? When I called her, I knew that the news was really, really not good. I could tell she had been crying since the doctor told her this. She explained a little bit to me, but said she didn’t know much and that they would be seeing a specialist in an hour to get a confirmation. I offered to take the rest of the day off work and go to that appointment with her, but her husband was with her, so I stayed at work Googling HLHS my entire lunch hour. As it usually goes with medical stuff, the more I Googled, the more scared I became for their girl and the more I cried. I was a nervous, anxious mess the rest of the school day. As soon as I picked Ella up from the sitter’s, we went to Target to purchase “a bucket of sunshine” filled with yellow things because what else do you buy your pregnant friend who needs a little pick-me-up? My go-to would be wine, but turns out, she couldn’t enjoy it!
When Ella and I walked into the house, it was a sad place. Her and her husband sat in the recliner and on the couch and each chimed in explaining to me what they had learned from the specialist, but explained that they would learn a lot more in upcoming cardiologist and high-risk OBGYN appointments. I think when I left that night, all I knew was that: 1. baby Riley was safe while she was in utero; 2. she would have her first open heart surgery between 4 and 10 days old; 3. that my friend would have a LOT of appointments for the remainder of her pregnancy; 4. that there was absolutely no way I could change the outcome of this diagnosis or help my friends feel better about it. The last bothered me, because I’m a fixer. I like to think I can make everyone’s life better, happier, and a little easier. This couldn’t be further from the truth in this situation. No matter what I did or said, baby Riley’s heart wasn’t going to correct itself.
You see, we have been through some of the most exciting times in our lives together and expected this to be no different. We were both pregnant with our first children at the same time. We shared every single (gross and slimy) detail about our pregnancies. We were there when we delivered our babies. We were there to get each other through those first couple rough days back to work after maternity leave. We were there when we quit work and decided to work together to watch kids so that we could both be at home with our own, and make money doing it. We were there for each other when we each went back to work. She was there for me when I miscarried last April. She encouraged me to take a pregnancy test when I thought I was pregnant with Callie, shortly after my miscarriage. We were always one of the first 5 people to know about our pregnancies. We were so excited when she found she was pregnant and due just 6 weeks behind me. That meant we would have another set of best friends (both girls this time)! Nowhere in our plan, did it say, “Have a baby with a CHD who will spend lots of time in the hospital.” But those were the cards we were dealt, and I wasn’t going to stop being her friend because of it.
Each day my friend had an appointment, we would talk and I would get the low-down. Sometimes they were uneventful appointments (these were the best ones) and sometimes they brought more bad news. Towards the end of her pregnancy, my friend learned that not only did Riley have one working side of her heart instead of two, but also that she had an intact atrial septum. I’m not going to pretend to know what exactly that meant, but I know that it meant something like a hole was supposed to be in her heart somewhere and it wasn’t. This was going to become a major problem the second she was born. Because of this new found issue, my friend was going to have a C-section at Riley Hospital and baby Riley Marie was going to be immediately taken next door to another OR to have her very first surgery.
A couple days before Riley’s scheduled C-section, I went to my friend’s house to help her pack her hospital backs. We were both clueless as to what both her and the baby would need. There was so much unknown until baby Riley was born. We packed a couple outfits and lots of bows and socks for Riley. We packed the post-partum necessities for my friend.
When the day came for the C-section, everyone was on pins and needles waiting to hear the outcome of the birth. Since she was delivering at Riley Hospital during flu season, there were strict rules on visitors, and since I was “just a friend” (according to the hospital), I wasn’t allowed to even be in the waiting room with their families. Maybe they wouldn’t have wanted me there anyway, as it was going to be very emotional either way. So I sat on my couch, with my 3 week old newborn and 2 year old, and very anxiously waited for a text message, phone call, or picture. My phone finally went off, and I got word that Riley had been born and had been taken to her own OR so quickly that they didn’t even get to hear her cry. The doctors and nurses were so quick to get her there to save her life. Once they opened her up, they realized that they didn’t have all the damage they were once anticipating. This was good news so far.
That night, I visited my friend back at Methodist where she had to stay for her 2 days post-partum. She seemed to be in higher spirits than I imagined her being. For some reason I imagined her bawling hysterically and not stopping (maybe because this is what I imagined doing in the same situation?). We talked about the C-section, I watched her eat her yummy hospital dinner, and saw pictures they took on their phones. I knew it was the last time I would get to see her for quite some time, as she would be crazy busy talking to doctors and sitting by her newborn baby’s bedside.
The next couple weeks are kind of a blur, with the exception of big events. I would (still do) text her every single morning to find out how the night and morning went, because it was usually night when Riley would take 2 steps back.
The day Riley had her Norwood surgery (the first of the 3 surgeries required for this diagnosis) was a tough one for everyone. Again, Katie’s family was in the waiting room and I was actually in the waiting room at Immediate Care with Bronchitis. Again, I anxiously held my phone in my hand all day waiting for updates. First came the update that they had taken her back. Then she was on placed on bypass. Finally, they were closing her up. Lastly, my friends got to go back and see their baby girl. Her heart and lungs weren’t quite ready to work on their own so she came out of surgery on an ECMO machine. Of course I had no clue what this was, so I Googled it and found out that it was basically a heart and lung bypass (I took out all the medical, technical jargon). My friend said they knew it was a possibility, but wasn’t an ideal situation.
Riley was on this scary ECMO machine for only 4 days, while the doctors allowed time for her lungs to heal enough to do their job without the machine. After a couple trial runs, they finally determined she was healthy enough to be taken off the machine.
Shortly after she was taken off the machine, the hospital lifted their flu restrictions and my friend text me at about 9:06 one night and said, “Flu restrictions have been lifted! You can come see Riley!” I was so excited and text all my friends and my mom. I arranged for a back up babysitter just in case Chad got off work too late so that I could go see her the very next day. That’s when things took a turn for the worst.
When I woke up the next morning, I had a text from her that didn’t sound good. I don’t remember exactly what it said, but it wasn’t until I spoke with her mom later in the day that I really understood what was happening. Riley’s stats were dropping quickly and far too low. The nurses had to call for help, and nothing was helping. They had to perform emergency surgery to hook Riley back up to the ECMO machine hoping it would help her get through this tough time. For the next couple days, the texts weren’t good. The doctors were telling them that this was a last resort option. “There is nothing left to try if this fails We will be surprised if she makes it through the weekend.”
When I got these texts, I hugged my girls so tightly and I cried like a baby. I called my mom at work and cried over and over. Why is this happening? What baby deserves this? Why would God allow this to happen? I DO NOT want to go to a funeral for my best friend’s newborn baby. I cried to Chad when he got home at night. He hugged me and didn’t talk, which was exactly what I needed. I posted all over Facebook to PLEASE, PLEASE, PLEASE pray for this sweet baby to pull through. I was Googling risks, possible outcomes, chance for survival, and nothing looked good. I bothered my friend and her husband multiple times a day for some sort of good news and it just didn’t come.
This is when I started doubting everything I grew up believing in. I grew up going to church and although I went less and less as I got older, I still believed without a doubt. Now, I was doubting big time. Why should this baby be fighting this hard to stay alive? What did she do to deserve this? What did her parents do? Not only her, but why should any baby or any parents be put in this position? I was praying, and I was seeing no progress in the text message updates and I was doubting big time.
This was all just before Easter. I knew I wanted to go to church on Easter but I did not want to go to our usual “holiday church.” I started asking around for churches. We tried one church and it wasn’t anywhere near a good fit for us. I was bummed. On Easter, we went to a church that LOTS of people recommended and I loved every minute of it! It was like the pastor was talking to me. He was telling me to believe and to trust in the Lord and that he would do great things. I would cry during the worship songs because literally they were about Riley’s current situation. Suddenly, I felt so connected. (I know some of you will think I’m crazy, and I’ve kind of always thought that people who claimed to have this sort of connection were crazy, too. It’s hard to put into words, and even I don’t understand how it happened. All I know is that I am so thankful for all my fb friends who recommended the church to us.)
We continued going to church and a short time later, on April 16, Riley came off ECMO! She was strong enough and healthy enough to breathe on her own. And she rocked it! I finally go to go to her room to see her. She was so beautiful, even prettier than she looked in pictures. She has gorgeous skin, the longest eyelashes I’ve ever seen, and long thin fingers she likes to wrap around things. Since April 16, she has had some sort of improvement each day, with the exception of a few minor setbacks. The setbacks are completely normal and expected with these heart babies, as they will always be extra fragile. Once they weaned her off her vent, she didn’t even have to have oxygen through her nose!
I continue to attempt to see Riley Marie once a week, but some weeks I don’t make it up there. It’s hard with Chad working late every night since I can’t bring the girls with me. Each time I have gone, she’s lost an IV drip or some apparatus coming from her body. The last time I went, her eyes were open and all limbs were flailing. I’ve seen video of her sucking on a paci and holding toys. This little girl is amazing.
I could go on and on about things that have happened all because of this little girl, but I’ll save that for another post. I’m going to end by saying this: If you ever find yourself in my situation – your friend’s baby, or older child, has been diagnosed with something unpleasant – the best thing you can do is to be there for them. It’s going to affect you more than you thought it would. The highs and lows you read about online, will be more drastic than you thought. You will lose track of the number of hours you hold your phone waiting for an update. You will learn to wake up immediately when your phone goes off in the middle of the night, because nothing good happens at that time. You will start learning everything you can about the diagnosis because you care and because it’s important that you really understand and because people will ask you about the child. You will become very protective of your friend and will get mad when people say stupid things or pretend they understand the situation when they have no clue. It took me a while to figure out how to know when my friend wanted to talk about the bad news she heard at the doctor that day and when to know she wanted to talk about “life before the diagnoses.” I’m sure I still do and say things she wishes I wouldn’t. Maybe she wishes I did more. One thing I’m almost certain she knows, is that I care about her, Riley, and the rest of her family very much. I also hope she knows that won’t ever change. No matter how much time she spends in the hospital, no matter how many bad news texts I get, and no matter how many days we go without spending our usual girl time together, I will always be her friend. I will always be there to break her out of the hospital for a pedicure, hug her when she’s upset, or celebrate when we get good news (even if it’s something I took for granted when my own kids accomplished the same task), and I am 100% positive she would do the same for me. Everyone’s life changes when they have a child, but it’s a different change when you have a Heart Baby.
I can’t wait for the day Riley Marie gets to come home and meet my girls. I know her and Callie will be the best of friends and will gain up on the older two. My friend and I will cry together when they start kindergarten and cheer together when they’re on stage dancing.
Until next time….
“Friends are angels that lift us to our feet, when our wings have trouble remembering how to fly.”