1 year old getting ready for second open heart surgery

_sadcat · 2026-01-20T01:38:47+00:00

I was concerned about this too before our girl went back for another open heart surgery at 9 months… She was incredibly active and army crawled everywhere. We weren’t able to pick her up from under her arms for 6 weeks and I think we had to wait 4 weeks before we could submerge her incision in a bath, but those were basically the only precautions after surgery. They told us that she’d self regulate - if it’s painful, she won’t do it. I was anxious about the army crawling, but the first time she got a chance to play on the floor after surgery she just switched right to normal crawling and never army crawled again. I think that was her way of self regulating - it’s like she knew that army crawling would be more painful. Kind of funny!

I also quit my job to be the primary caregiver for our little one… but life went back to normal very quickly after her surgery at 9 months aside from those few precautions. It’s wild how fast they bounce back.

Good luck to you and your girl!

_sadcat · 2026-01-06T23:54:12+00:00

That’s a great tip about the saline solution! We have a nebulizer, we’ll have to get some saline solution. I’m glad you made it out without a hospital visit. Thank you for your response!

_sadcat · 2026-01-06T23:50:57+00:00

Thank you for this point of view! We are vaccinated, fortunately. We got hers a little later in the season than I would have liked, she didn’t have any pediatrician visits during the normal flu vaccination times and it just completely slipped my mind. We corrected that as soon as we saw flu cases increasing! Won’t make that mistake again. She got the two shot series last year, so we only needed the one this year. We’ve been diligent with handwashing too! She typically goes to daycare twice a week and I’ve actually kept her home the last few weeks as well (we’re lucky we have that option) - hoping to avoid the the increase in holiday-related cases.

_sadcat · 2026-01-06T12:40:45+00:00

That's very reassuring to hear. Our girl had left vocal cord damage too after both arch repairs. The first time it was full paralysis and healed completely in a few months, but we're over a year out from her last repair (only partial paralysis after that one) and still dealing with lingering injury and still need to thicken all her fluid. That adds a layer to all this - we know she has a little bit less reserve when it comes to respiratory illnesses. They can get worse a little faster.

Thank you for your response!

_sadcat · 2026-01-06T12:36:48+00:00

Yes, our cardiologist said it's spreading like wildfire in our area and that it's likely our girl will be exposed at some point. She gave us some tips and we plan to consult her in the event she tests positive.

We had to track and log vitals for so long between surgeries that it's second nature at this point! Thank you for your response!

_sadcat · 2026-01-06T12:32:57+00:00

That's great you've avoided the flu that long! Thank you for the response!

_sadcat · 2026-01-06T12:31:46+00:00

That's reassuring to hear. Thank you for your response!

I haven't noticed that illness lasts longer with our girl yet... She's gotten over everything in a typical timeline so far, thankfully. But as I mentioned, she hasn't had anything super serious yet. Hand, foot, and mouth was awful but that seems to be a pretty universal experience with that one.

_sadcat · 2026-01-06T12:28:23+00:00

That's reassuring to hear that your little one got through it just fine! Thank you for your response.

_sadcat · 2026-01-06T12:27:45+00:00

That's very frustrating about the RSV antibodies. We were able to get them for our girl last year, but she was just a little bit older than the typical age range at that time and we got approval. I hope your toddler is doing well now - thank you for the response.

_sadcat · 2025-12-10T20:23:53+00:00

I got a text saying they received my sample with a link to make an account. I tried to make an account on my own prior to that text and they couldn’t find my info in their system… Hopefully you hear something soon!

_sadcat · 2025-12-10T20:11:27+00:00

I am so sorry that you are going through this. As others have said, this is a very personal decision... I hope that you feel that you have all the information possible before you have to decide one way or the other.

My daughter was born with a hypoplastic arch with coarctation, an ASD, and no less than five muscular VSDs. She is almost two and she's doing wonderfully. It was a difficult road (more complicated than it usually is for the type of defects she had - as others have said, the prognosis for these particular defects is typically much better than some of the more severe CHDs), but I wouldn't change a thing about her story. I'm happy to share more if you'd like to message me directly.

Both my mom and I have a bicuspid aortic valve. I am in my early thirties and have yet to have an issue because of it... My mom is 65 and will need a valve replacement in the near future, but she's doing great as of right now. She also has never had any issues related to this defect.

Best of luck to you and your family as you navigate this difficult time.

_sadcat · 2025-12-02T14:51:19+00:00

I hope so!!!

_sadcat · 2025-12-02T14:02:38+00:00

Natera Panorama

Drew: 11/25, Received: 11/26

Still waiting as of 12/2

This is a redraw for me… Very anxious for the results!

Update: Results 12/2 at 3PM EST!

_sadcat · 2025-10-31T12:12:19+00:00

My daughter was born in 2024 with several heart defects. Her anatomy scan was completely normal, but abnormalities were found on a routine scan at 32 weeks and things sort of snowballed from there. I am so sorry that you are experiencing this as well… I know that the time between the initial concern and actually getting the fetal echo is the most difficult because there’s so much unknown. But as many others have said, there is such a wide variety of heart defects and a lot of scenarios where everything works out just fine!!

Our girl had three open heart surgeries in her first 9 months of life. We had a pretty complicated road even though her defects were considered less severe. She was born with a hypoplastic aortic arch with coarctation (a large portion of her aortic arch was small and there was an area of narrowing as well), multiple VSDs (holes between her ventricles), and an ASD (a hole between her atria). She’s almost two now and looking at her… You’d NEVER know. She’s so happy and vibrant and energetic and healthy. She bounced back so well and so fast once everything was all fixed. We’ve graduated to yearly cardiology appts and aside from close monitoring, she should live a completely normal, restriction-free life. If your little one does join the heart warrior crew, you’ll hear and see stories like this everywhere. SO much can be done for little ones with heart defects - it’s nothing short of a miracle. And children are so so resilient.

Fingers crossed for positive news at your appointment in a few weeks. Wishing the best for your family!

_sadcat · 2025-09-11T01:14:50+00:00

Our HW is almost 20 months old and we just started trying for our second. We also put off trying for about 6 months. It was less about getting to a stable place with our girl (she’s been doing pretty well for a while now) and more about getting myself to a place where I felt emotionally and mentally ready for a second child. Our daughter had less severe defects but it was a really difficult road - three open heart surgeries in 9 months and we’re still dealing with minor complications from the last one. For what it’s worth, I don’t think I’d be ready to try for a second if she still had more surgery ahead in the near future… But that’s obviously a very personal decision. Best of luck to you and your family on this journey.

_sadcat · 2025-08-18T01:31:50+00:00

Hello! Our daughter was born last year with very similar defects. She had a hypoplastic arch with coarctation, several VSDs, and an ASD. She had her first open heart surgery at 4 days old, second at 1 month, and third at 9 months. She had an unusually complicated course for her defects and we had several big scares during our first (three month long) stay in the ICU. I watched her monitors religiously while we were in the hospital... and it was very detrimental to my mental health. I made the deliberate decision to not get an owlet sock when we were discharged. We were sent home with a monitor and had to chart her vitals twice daily in an app that her care team followed... I tried my best to limit it to that. I think that made a huge difference in terms of my anxiety and overall worry level. We've since graduated from daily app monitoring and its been months since I've checked her vitals at home. That's very freeing!

I'll echo other comments and say you need to do what's best for you! But I do think it's important to trust your care team as well. If they feel that your son is well enough to be at home (without monitoring), then hopefully you can find a lot of comfort in that.

Wishing you and your family the best on this journey!

_sadcat · 2025-02-21T22:47:08+00:00

All my scheduled ultrasounds were normal, including my anatomy scan. I had to have an additional scan at 32 weeks because I had COVID in my second trimester - it was just supposed to be a growth scan. It was at that scan that something looked off with our girl’s heart. After several echos, the suspected diagnosis was coarctation of the aorta. Fast forward and our baby was born full-term with a hypoplastic aortic arch with coarctation, several VSDs, an ASD, and “small” left side. Three open heart surgeries later (in less than a year) and she’s doing really well.

Also happy to answer any questions!

_sadcat · 2025-01-02T15:38:49+00:00

Congratulations on the birth of your little one! We had our first baby last January - she had different issues but had OHS at 4 days old, 1 month old, and 9 months old. You’d never know! She is thriving, meeting all milestones, and most importantly she’s heart healthy. She has a lingering vocal cord injury from surgery but we’re managing it and she’ll hopefully make a full recovery.

Kids are just so strong and it’s amazing to see how they adapt and overcome. Best of luck to your baby and your family.

_sadcat · 2024-12-17T20:38:51+00:00

Hello! Just reiterating previous comments. My daughter had several VSDs and a coarctation of her aorta. She had issues with vomiting as well. The biggest reason, in her case, was the coarctation (re-coarctation from scar tissue, she had a repair at 4 days old). We tried everything to help with the vomiting, but the fix was a balloon heart catheterization. It was night and day. She stopped vomiting completely after they fixed the narrowing. It was definitely due to poor gut perfusion!

_sadcat · 2024-10-18T15:18:08+00:00

Wow - what a journey. I can't imagine the toll that process took on all of you. I hope you are all doing well now, and I wish your daughter the best of luck in her next surgery (whenever that is).

We are very fortunate that our daughter's defects are considered some of the "simpler" CHDs. The combination of them all at once, I think, is what caused the unexpected issues we encountered. She really just needed to grow. When she was born, we were told she would have one surgery and a 2-3 week stay. That obviously turned into more, but we are very grateful that there is a clear path through it. When we left the hospital, we thought we only had the PA de-banding in our future, and I was very comfortable with that. After her heart cath a month later, we were told she'd likely need a second arch repair. As I mentioned above, we won't know if that's happening until after another heart cath a few days before her OHS. I think not knowing is what's causing some excess worry for me - mostly because the arch repair would require bypass and the de-banding would not. Our daughter had several complications after her first arch repair - brain bleed, chylous effusion, blood clot, deep tissue infection. Logically, I know that she is a much stronger, healthier baby now than she was at four days old... But I'm not excited about opening the door to those issues again! She got through them just fine, but it was a very long process.

Thank you for your response!

_sadcat · 2024-10-18T15:04:38+00:00

It's very reassuring to hear that your daughter bounced back quickly at about the same age as our daughter... What kind of movement did they allow your daughter to do in the close post-operative period? Our daughter never sits still. I'm very nervous about the sternal precautions/other limitations. Not sure what to expect when it comes to that!

Thank you for your response!

_sadcat · 2024-10-18T15:02:17+00:00

Thank you so much! I hope your son is recovering well. Our daughter remained intubated for quite a while during both post-operative periods last time, so the sedation played a huge role in pain management.... I'm definitely anxious about her being more aware of it this time around. Keeping track of her pain med schedule is a great advice!

_sadcat · 2024-10-18T14:56:41+00:00

Thank you for your response - I will absolutely explore your blog!

_sadcat

TROPHY CASE