DS needs heart surgery

[Nooknookmom]

Sending P & PT to your little guy and your family. No exp here but I'm sure everything will go just fine, hang in there!

[KpbS]

Sending P+PT for you guys and your little one.

[trentsmom]

Hugs to you and your family...

[mom2ethan]

Sending lots of P&PT!

[slworld]

No BTDT advice but P&PT coming your way. DS has a small VSD which apparently they no longer operate for. The ped who visited us in the hospital noticed the murmur and further tests showed it. They were hoping the hole would cover up within a few months but it didnt. They said if it doesn't by 2years then it probabaly won't (he is 15months old and is scheduled for the cardiologist appt next week). I have asked several times but in our case they never mentioned any precautions except good dental hygine (apparently bacteria from the teeth can get lodged in the hole). Until a few years ago they used to give antibiotics during dental procedures for patients with such conditions but I don't think they do that either now. Good luck to you & your DS.

[JTsMom]

I'm so sorry. I know how hard it is. DS has a very rare, very complex heart condition that required open-heart surgery at 3 months, and a cardiac cath at 13 months.

I'm going to pm you my email address. You can ask me anything, or just vent if you want to.

I think it's wonderful that you are trying to prepare yourself ahead of time. A few tips I always give are:

1. Familiarize yourself with basic cardiac anatomy and physiology as much as you can ahead of time. It really helps make it easier to understand the things the doctors and nurses tell you.

2. Find support! There are CHD groups both IRL and online. Nothing helps as much as talking to other moms who get it.

3. Don't be afraid to ask questions or to advocate for your baby. Find your inner mama bear, and let her out!

4. Take lots of notes. When you have questions, right them down immediately. You'll be pretty frazzled, so don't trust yourself to remember much.

5. Prepare yourself for after the surgery. When you feel ready, look at pics of other babies all hooked up to machines, IV's, etc. It's hard to look at, but it's easier to see someone else's baby that way first. Learn what all of the stuff is so that it's not so scary. Our hopsital actually kept books that parents made with pics and journaling. I have lots of pictures. If you want me to share, just say the word.

Take whatever help you're offered so that you can totally focus on the baby. Try to take care of yourself too.

6. Learn infant and child CPR. You'll probably never need it, but it's important. Know what to look out for.

7. Talk to the parents of CHD kids, and look at their big kids who are leading relatively normal, healthy lives. Tell yourself over and over that this is NOT what your baby is all about, it's just one part of him.

8. Know that CHD kids often have other issues with development, and if you see signs of any type of delay- speech, a physical delay, or sensory issues, get therapy asap.

For me, the finding out part was the absolute worst. Don't get me wrong, the surgery is pretty bad too, but the finding out just horrific. Hopefully, this is the low point for you too, and it will all get better from here on out, so hang in there.

Some more .

[mommyp]

No advice, but and P&PT coming your way.

[citymama]

Sending huge hugs and P&PT to you and your little DS. Many good wishes and prayers for his surgery and full recovery.

[Fairy]

Much P&PT for you and your little guy.

[alirebco]

((hugs)) My nephew was born with tetralogy of fallot and had surgery at 4 months. It was very overwhelming with all of the doctor visits and the language but they got through it and he is doing great now, at just over a year old. Sending thoughts and prayers to you all.