I truly wish I had some magic formula to share that helps to ease stress in the weeks leading up to surgery! Promise I'd share it if I did, but it is a terrifying thing. It almost doesn't feel real, but logically you know your baby needs this in order to live a longer life. Tensions being higher than they typically would be is completely normal. I found it helpful to remind myself that my husband and I are on the same team with the same goal of keeping our Mila as healthy as possible…we may cope differently but we do have the same goal! I'd highly encourage your wife to seek a therapist/counselor, she can do it by either asking her doctor or asking the pediatrician for a referral. I wish I had done it sooner after going home post first open heart surgery and transitioning to life at home…mostly alone. My husband had to go back to work and I couldn't have family over to help because we were states away and it was in the middle of Covid so no one was flying anywhere. I didn't know who I could go to and that ended up putting a ton of pressure on myself which turned into complete unnecessary guilt on myself…like if the smallest thing went wrong I would absolutely lose my mind terrified that I've messed up so much that I've messed with the health of my child. And also couldn't help thinking that what if I caused her defect somehow (even though logically I know I didn't). The counselor I saw put me on some cognitive behavioral therapy exercises that helped me. Whenever an intrusive thought hit me…for example "I'm a horrible mom" I literally had to write it down and write out how to refute that with the literal facts of what I do and who I am as a mom. It was really helpful for me to do, I saw the counselor only once because I got distracted and forgot to make another appointment but that method really really helped me from spiraling!
BetterHelp is also an app that can match you with a therapist in your state, I've used that before too for like a month. It was worth it for me.
Mila's first open heart surgery was at 5 days old, she was born and then diagnosed and then airlifted to a hospital with a NICU to await surgery asap. It was a lot all at once. They patched up her VSD and placed a conduit for better blood flow for her truncal valve…kind of like what should have been the aortic valve. However, that valve does not grow with her heart tissue so she will continue to need surgeries every time her heart grows out of the conduit that is in there and will need to size up…if that makes sense? Explaining her CHD is weird for me without a diagram, anyway, she had her second open heart surgery at 20mo old and is now 2.5 years old and doing well, current cardiologist is hopeful that we will be able to hold off on needing her next OHS (open heart surgery) for a few years.
Anytime your sweet baby needs to be put under anesthesia for any procedure is terrifying. It's important that you trust the medical team and cling to one another for support.
Also- I wonder if there is a home remedy out there that can help with getting rid of those pesky bugs…I usually just Google how to get rid of things and try it and hope for the best. I am sorry she is having a hard time and that these dumb little bugs are being so annoying…but it will always go a long way to remind her what an amazing mother she is no matter what the stressor is. I had little things absolutely set me off when I was in high stress and whenever my husband says something as simple as "I'm so grateful you're Mila's mom, no one else could take your place" it helps to shift my perspective. Being appreciated by those you love goes a very long way, especially if you're questioning yourself as a mom like I was.
Tell your wife she isn't crazy. She's coping. And it will get better ❤️ and hopefully (most likely) this will be your baby's only OHS. From what I've heard from other parents who's babies had a VSD or ASD is that after surgery and recovery how much their quality of life increases! More stamina to eat, larger appetite, more energy to play and do normal baby things. All wonderful possibilities to look forward to.
I know what it is to feel alone in the waiting while transitioning to being a first time parent…please let your wife know she can message me anytime she'd like to! She isn't alone.
Original Message:
Sent: 07-09-2023 19:27
From: Gregory Kusek
Subject: How to Handle Stress As A New Dad
Hi Tanya,
That was a very encouraging post. My wife and I are typing this, and we really appreciate your insight and response. How did you handle your emotions in the weeks before surgery? We are a mess with worry, and my wife cries all the time because she's scared. Scared of what might happen, of the worst possible scenario, and it takes a toll on a daily basis as of late. We learned recently that they will plan on having his surgery on the early side of being 4-6 months old, and he will be 4 months old in mid-late August.
Because of the worry for that, it makes all other issues in house or in general just seem even more stressful and difficult to deal with. For example, we recently have seen tiny bugs called springtails that like to hang around our kitchen sink and bathroom sink by our bedroom. They are basically harmless overall, but they cause so much anxiety for my wife because of having to deal with bugs as a child as well as other pests as she grew up, so it brings up a LOT of unpleasant memories for her.
It feels just so overwhelming on a constant basis, especially for my wife as she is home all day on bonding leave while I'm at work, which gives me something else to focus on. This makes her feel alone to the point of going crazy, she feels. Is there any advice or suggestions you can give that can help give us peace of mind and get through this difficult time in our lives?
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Gregory Kusek
Plattsmouth NE
Original Message:
Sent: 07-01-2023 01:30
From: Tanya Alexander
Subject: How to Handle Stress As A New Dad
Hi Gregory!
Welcome to the club that none of us want to be a part of but one that is absolutely covered in support. Transitioning to being a parent is hard enough as it is, so adding a heart defect on top of that will for sure add extra stress! You and your wife are doing great, you are finding your way! My husband and I did not bicker nearly as often as we did when our daughter was born…stress levels are high. Give yourself some grace, give your wife some grace and let remind her to give herself some grace too. It is 100% okay and GOOD to ask for help should you feel that you may benefit. You could mention to your doctor that you'd like to learn mechanisms to help cope with your mental health during this transition to parenthood. When I finally asked I was referred to the mental health specialist at our clinic and it was so helpful for me. I sympathize with your wife as well, I remember being up every 2-3hrs pumping and then fortifying my milk and also changing her food in her bag every 4 hours as well. She was fed continuously by feeding pump and 4 bolus feeds by pump during the day time. I could not produce as much as was prescribed for her and I absolutely drained myself pumping for 7mo because I felt it was the only thing I control in an uncontrollable situation. I don't regret doing it, but also looking back I don't regret stopping before the goal I had in my head.
Sharing all of this to say my husband and I can totally relate to your situation with this transition into this new chapter of your lives, you are not alone.
Our daughter is 2.5 years old now with two open heart surgeries behind her and is the absolute light of lives. Her CHD is truncus arteriosus. Please feel free to reach out anytime! And make sure to tell your wife she isn't alone, I remember feeling incredibly isolated and alone in the beginning and just dove into a dark wormhole of unnecessary guilt feeling like I wasn't "mom enough" it's a weird thing to explain but I don't wish it on anyone.
In case you haven't heard it- you both are great parents. It does get easier. You will find your groove. Don't be afraid to ask for help, however that looks like, and give yourself grace.
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Tanya Alexander
Lincoln CA
Original Message:
Sent: 06-29-2023 21:35
From: Gregory Kusek
Subject: How to Handle Stress As A New Dad
Hello everyone,
I am a proud dad of a now 10 week old son and is our first child. A week after he was born, we learned he had a Ventricular Septal Defect in his heart, wherein there's a hole in his heart where more blood goes into his lungs than normal, causing him to breathe more heavily and burn more energy when feeding with a bottle, so he's currently mostly being fed through a tube via gravity dripping. We feed him every three hours, even at night and are in a routine now, for the most part.
However, stress is much high now that we have a child. My wife pumps every three hours as well, but it is very draining on her, especially at night. Having a kid in general has become more stressful than expected. I've found myself getting annoyed a lot easier when inconvenienced by something, especially when I've just sat down and then I'm asked to get something. This also happens when I'm trying to get a task done, and then I'm asked to do another thing or maybe I'm trying to search for something online with my wife but then get upset or annoyed when her inputs clashes with how I search.
Basically, all the little things are starting to get to me far more than they should. Do all new dads tend to go through this? Or is my case a bit more than usual? My wife and I talk about it and try to address it, but the issue still persists. Does anyone have any advice on how they handle such stress at home?
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Greg
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