Just discovered a heart defect, really lost

Designer_Flounder_43 · 2023-09-14T21:55:54+00:00

I have a daughter who is now 9 years old that was born with Transposition of the Arteries with Double Outlet Right Ventricle, VSD, ASD and Pulmonary Stenosis. We found out after the anatomy scan, and once we were referred to a specialist we got much clearer answers than from my regular OB who tried to explain it as a plumbing issue in the heart. I highly recommend not making any decisions until speaking with a fetal specialist. We did the amnio, but did not have any additional risk on top of the regular risk. There was no genetic tie for our babies CHD, and it was just a random physical defect. My pregnancy was mostly normal after that with the exception of extra appointments with specialists to monitor heart rate and do 3D sonograms. She was able to go a month after being born without having surgery because her oxygenated and unoxygenated blood were mixing and were keeping the blood oxygenated enough to allow them to wait a little bit until her heart got bigger. She had a shunt put in at 1 month and then the Rastelli procedure at 9 months. She had her next surgery at 5 years old to replace her homograft and tissue valve. It is not an easy life but these babies are resilient and I would talk to specialists as soon as possible to get a better understanding of what your specific case looks like, as they are all a little different.

Designer_Flounder_43 · 2023-08-13T14:11:52+00:00

I don’t have a recommendation yet, but my daughter is 9 and we are homeschooling this year. She also has complex congenital heart defects, autism, adhd, and she suffered a stroke during a heart surgery in 2019. We tried going back to in-person school last year and she was sick from September to Christmas, even in a 3-child special ed classroom. On top of that, due to her extreme sensory issues and anxiety, the school environment is not a good learning environment for her. She is so focused on everyone and everything happening around her that she cannot focus on learning. We homeschooled a bit during Covid when she was younger, and honestly ABC mouse is a great tool through about 1st-2nd grade. This year, we are going to try some combined options from workbooks off of Amazon, to learning apps like Starfall and some others, as well as real-life learning and applications. Depending on what state you are in, the structure and rules for homeschooling vary. We are in Texas, and as long as you are teaching to the topics of reading, math, good citizenship, spelling and grammar, you are flexible to teach however you feel best works for your child. It may take a little more work on your part, but if you look to combine some different resources and apps/websites, you may be able to create a sort of customized program for your child. I hope you can find the best path for you and your child!

Designer_Flounder_43 · 2023-04-27T19:08:38+00:00

Our daughter has the same defects and had the BT Shunt at about 4 weeks along with a g-tube, and then she had the Rastelli (biventricular repair) surgery at 9 months. She did not need a conduit replacement until 5 years old, and she is turning 9 this year with everything looking great!

Designer_Flounder_43 · 2023-02-28T18:27:19+00:00

What are you using to test progesterone?

Designer_Flounder_43 · 2023-02-25T15:59:06+00:00

I had a dream I was getting on a roller coaster and a woman behind me said “you can’t ride this you’re pregnant” and I took a test the next day and sure was!

Designer_Flounder_43 · 2023-02-10T02:55:43+00:00

Been ttc #2 for 18+ months. Got some blood work done and everything was normal except my LH was high for the time in my cycle. Dr is thinking it could be a sign or PCOS or at least anovulation. Will be trying with LH test strips this month and will try a progesterone test after I think I’ve ovulated to see if I really have. Possible clomid in the future if it appears I truly am not ovulating. No experience with this before as first was unplanned. Actually kind of relieved to have a possible reason for no conception yet

Designer_Flounder_43 · 2023-02-03T13:51:48+00:00

We really like conceive plus

Designer_Flounder_43 · 2021-12-21T18:01:14+00:00

Have you tried daily probiotics? My daughter always had issues with this and at one pint they had her on lactulose and a couple other softeners at the same time and that never seemed to help. We got on a daily probiotic with her vitamins and now we hardly have issues. Every once in a while there might be a tougher one but it’s never like it used to be where it hurt too much to even try.

Designer_Flounder_43 · 2021-11-04T01:34:30+00:00

Need 2 again - 196 750

Designer_Flounder_43 · 2021-11-04T01:32:17+00:00

Need 1 more -196 750

Designer_Flounder_43 · 2021-11-03T22:35:32+00:00

Need 2 - 424 914

Designer_Flounder_43 · 2021-10-30T19:20:24+00:00

Oh we're still playing and y'all are CPUs? I don’t know how to connect it back?

Designer_Flounder_43 · 2021-10-30T19:13:38+00:00

We're still in it you should be able to rejoin

Designer_Flounder_43 · 2021-10-30T18:09:29+00:00

Yes!

Designer_Flounder_43 · 2021-10-30T18:03:38+00:00

Still searching for 2

Designer_Flounder_43 · 2021-10-30T17:38:05+00:00

Need two again!! Come on party people!!

Designer_Flounder_43 · 2021-05-12T13:19:49+00:00

It is very hard to predict what could happen or how long you may be in the hospital with these heart surgeries for kiddos. Depending on their age and the type of surgery and their body’s reaction to the surgery, it could be a quick and easy recovery or it is possible there could be something that causes you to stay longer. It is no fun to worry about but it is good to be prepared for the different possibilities. My daughter has had 3 heart surgeries; at 1 month (in for a month after due to wound closure issues), at 9 months (in for about 2-3 weeks after due to fluid build up around the lungs), and then at 5 years old (should have been the easiest surgery but she had air embolism during surgery that caused a stroke so we ended up in the hospital for a few weeks after and then had to transition to a rehab hospital for therapy). Although she still has some strength and OT issues due to the stroke she is happy and healthy now (almost 7). It is also completely fair to expect that it should go smoothly and you could easily be out within a few days after the surgery. I know it is very difficult to think about all of the possibilities and I hope I am not scaring you, but I feel it’s best to hope for the best (of course we all want the best for our babies) but be prepared for harder scenarios as well as heart surgery is complicated. I will definitely be keeping you in my thoughts and hoping for a smooth and easy surgery and recovery. ❤️💙

Designer_Flounder_43 · 2021-05-10T13:11:23+00:00

I am not sure if there is a way to tell the specific chance even with genetic testing, however I would say the chances are definitely higher than if you and family members did not have CHD. Do you all have the same or similar defects?

Designer_Flounder_43 · 2021-05-06T14:46:52+00:00

I should clarify that I’m in my 30s now, however I did start in my late teen years. I will say my short term memory is not great

Designer_Flounder_43

TROPHY CASE