I interrupt my regularly scheduled blogging to write a post for my fellow heart moms. It's a club that none of us want to be in, but once you're in... you're in for life. It's something that I always thought happens to OTHERS, but never ever imagined it would happen to me or one of my children. It was a surreal thing to experience. How could this happen?! Anyway, I have a lot of doulas who reach out to me with clients who are expecting a child with a heart defect, so I thought I would write a little guide of what helped ME. You may not know, but my 3rd child was born with a critical congenital heart defect. At 10 days old she was on a ventilator for almost a week in congestive heart failure and then at 3 1/2 months old the heart failure got too severe to control with medication anymore so she underwent open heart surgery to correct her defect. This was almost exactly 2 years ago now, Sept 6th 2012. She is one of the most joyful, happy, silly and sweet 2 year olds I have ever met. One thing I've learned is that babies are a lot stronger than adults... they WANT to survive and thrive. Though we had touch and go moments (which I am pretty sure everyone does before/during/after open heart surgery)- we got through it! I learned a few things during my time so I thought I'd write a quick list for those preparing (can you ever REALLY prepare for something like this?).
1. Say YES to all the help offered to you. ASK for specific help if you're not getting what you need.
Our first hospital stay was completely unexpected. When we went in I had no idea that I literally would not see the sun or walk out of that hospital for over another week. I had nothing but the clothes on my back and was very newly postpartum. Thank GOD for the Childbirth Collective- my birth worker sisters really were there for me. My doula set up a meal list and people brought food to me in the hospital. Which was SO nice because I literally couldn't even leave the room to go to the cafeteria because I didn't want to leave my baby for that long. People I didn't even know that well dropped off care packages- not just food, but PADS (I was newly postpartum after all!), Tylenol (I had an excruciating headache and asked someone for it), nice drinks, magazines (that I never read, but still sweet), chocolate, lotion, GOOD coffee, chapstick, etc. It's really hard for me to accept help from others, but if there is one thing I learned during all of this is that YOU WILL NEED HELP. So accept it. If you are not getting the help you need- ASK. Seriously. Asking for help is one of the hardest things for me to do ever, but having a child who must undergo a major surgery or have prolonged hospital stays- you will need help. And sometimes people just don't know HOW to help and need to be told.
2. Just because you say yes to help does not mean you have to entertain visitors if you don't want to.
Some people maybe would love to have others sitting with them during all of this. That was the last thing I wanted. I was a mess, my world was spinning, everything felt like a dream, and I didn't really feel like sympathy from others. It was nice when people came that most knew to drop off the goods and not stay very long. Don't get me wrong a few kind words were nice, but I didn't want to sit and hang out, except with a few specific friends perhaps. There was one time I remember specifically where I was just really extra emotional and exhausted after being up most of the night that I told the nurses to tell anyone who came that I wasn't accepting visitors. Which brings me to another point.... make sure people know to give you a heads up before they come. You may be pumping, you may FINALLY be sleeping, you may be talking with the care team. There are definitely bad times to just drop by.
3. Ask questions until you understand the answers.
Every morning and every evening during rounds a bunch of doctors will come into your child's room and will discuss the day, the plan, etc. Make sure that you ask the questions that you need to, or if you do not understand something being discussed that you ASK YOUR CHILD'S NURSE directly after. Or really, ANY time a question pops into your head. One of her jobs is to make sure that you understand and that all of your questions are answered. Sometimes the Drs talk in medical speak that you may not understand (though if you're a heart mom- in no time you'll understand it really really well)
4. You are your child's biggest advocate so do not be afraid to advocate for them!
I remember very vividly during my daughter's first hospital stay that it was a Sunday at 2am (of course, right?) and the order was that my daughter, who has already successfully been taken off a ventilator, was still not allowed to eat. She.was.mad. She was a newborn and had not had anything in almost a week, so of course she was mad. I was so upset that the nurse would not allow her to eat. Or at least try. I asked the nurse if it was better on her heart to let her scream bloody murder or if we might try a bottle (we couldn't do breast yet, because that would've been more effort... more on that later). She had her orders. I demanded that she call a Doctor in to explain to me WHY. So, the Dr came and and once I plead my case she said that yes, that was true and i was right. And they let her have a small bottle. And she was happy. They were going to say to introduce feeds Monday morning during rounds anyway. Stuff doesn't happy as quickly on the weekends and I am so glad that I stood up for her!! The answer may not be yes in all situations, but you need to ask questions and make sure you understand. I had just one other instance with a really terrible nurse who wanted to let her cry all night. Not okay. Know that you can also request a new nurse if you need to. This is your child, they deserve the best!
Please don't let this scare you- pretty much all of the nurses and staff were amazing to us. But hey- one overnight nurse having a bad night doesn't need to be with my kid. Ya know?
5. If you want to breastfeed- surround yourself with resources and keep on trying!
I was disappointed to find out that none of the nurses on the cardiac floor were very knowledgable about breastfeeding. They were supportive of pumping and giving breastmilk through a tube in my daughter's nose, but they were not knowledgable about latch, reintroducing the breast, etc. I requested a Lactation Consultant come assist me, but it took 2 days for her to call back!! That's a long time when you're trying to breastfeed. So I sought outside help. Call a LLL leader, an out of hospital IBCLC or CLC and reach out. If you have a doula ask her what resources she can find for you. I am happy to say that my daughter is still breast-feeding at 2, but it's not because we didn't have struggles. Especially after open heart surgery. She was not feeling well, was coming off some pretty intense medication, and it was a struggle for a little bit. She eventually learned how to latch again and we never looked back. Please don't be afraid of thing like a Supplemental Nursing Systme (SNS)... I actually asked my nurse to get me one and she had no idea what it was. So I had a L&D nurse I know bring me one from her hospital :-) Do what you gotta do and just keep plugging away!
Do make sure you pump a lot when your child is unable to nurse. Even if you end up not using all the pumped milk- you can donate it! That's what I did once we got home.
6. Take a break when you need one!
For me, it was SO hard to leave the room. I wanted to be with my daughter 24/7 and I rarely even slept because she didn't sleep (I guess that's abnormal, but they called her "light" because she didn't really settle well in the hospital). It's amazing what just a few hours of sleep will do. I had some nurses basically insist that they would stay up with her ALL night if needed so I could sleep. I think I worried that they'd leave her alone to cry and I wouldn't wake up (you don't cry very loud on a ventilator or right after being on one). So this nurse was a God sent to me! But I should've asked all the nurses to do that so I could sleep. It really made me feel emotionally and physically way more ready to handle the day. I still slept in the room WITH her, but I passed out on the little pull out couch I called home for her hospital stays. My husband would go home at night to be with the big kids, and I know that was really helpful to him (and the big kids!) as well. The other hard thing was just going to get food in the cafeteria or going outside for a walk. But eventually I learned that I *HAD* to. For my sanity. Make sure you take breaks.
7. Ignore well intentioned but horrible words of sympathy.
Don't get me wrong. Most people were wonderful. But some people are uncomfortable and so they say things to make THEMSELVES feel better. I heard some horrible words of "comfort." One person actually SAID TO ME "just remember- she was never yours to begin with." Um, are you freaking kidding me? This is the absolute last thing a mom with a baby on a ventilator wants to hear. I actually had a running list of horrible words of comfort that people said to me. It was easy to get SO ANGRY. I actually unfriended the person on Facebook who said the one I mentioned above I was so upset. But you know what is better? Just ignoring it. Know that when people are uncomfortable they say STUPID STUPID THINGS and I figure that now I hopefully know how NOT to do that when I am talking with someone else going through something really difficult. Best things that people said to me would be simple things like "wow, that sucks" or simply "I'm praying for her/you/your family." Even though I'm a Christian I did not want to hear about God's plan. Because seriously, the God I serve does not PLAN to have a child not make it. Yes, it sometimes happens because our world is an F-ed up place, but I absolutely do not believe that it would be part of some grand plan for my child to not make it. And heart moms do not want to dwell on that possibility. Truthfully, we're mostly on auto pilot. I didn't even really cry most of the time because I just WAS. So if you're reading this and you're NOT a heart mom... now you know that some words really do hurt. A lot. Even if you think you're helping.
There are a lot more things I could say, but this is my quick list. I suppose that this list would work for all parents of a child in the hospital. I'll be back with more alignment posts soon- but I wanted to write this on the almost anniversary of my daughter's surgery. Here's a youtube video (horribly edited- I was tired back then. Like, all the time.) It's of our 2nd hospital stay- Open heart surgery! I didn't take any video or many photos of the first stay- I was in too much of shock. This time, I at least got to pack a hospital bag and planned for weeks ahead of time.
Best of luck to you on your journey. Know that any and all heart moms can feel free to reach out to me if you need ANYthing at all. And if you're local- I can hook you up with some great resources as well.
Lots of love,
Mama Aligned is Lindsay McCoy.