The "heart" thread (CHD) - Page 6

[Prensa]

hey Jillian, I requested a copy of all my girl's medical records too, and got a bill for almost $400! did you pay a lot to get them? the bill came with a copy of the state law that says they can charge up 35 cents per page...and they did.

just curious about other's experience with getting records...

[LauraLoo]

Originally Posted by mama crane

but I feel so much for you mamas going through these first few months I know how hard it is but it does get better....and there does come a day or week when you realize that you haven't thought about the HEART at all and those are good days

And this is so true. We just passed the 8th anniversary of my ds' OHS.....and really, unless I come across threads like this, I don't really think about it much. Definitely not even on a weekly basis.

heartmommyak -- Our ped. cardiologist told me that I could call him day or night and ask ANY question that I wanted. (He did advise me to stay off the internet so I wouldn't get all crazy worried with bad information!) I think you can definitely call and ask the questions that you need to. I think there is definitely a need for closure - this type of situation for a mama is a trauma.

[Jilian]

Originally Posted by Prensa

hey Jillian, I requested a copy of all my girl's medical records too, and got a bill for almost $400! did you pay a lot to get them? the bill came with a copy of the state law that says they can charge up 35 cents per page...and they did.

just curious about other's experience with getting records...

We were lucky because our Midwife requested a copy and shared it with us. If another medical person requests the records they are free. We had DS at home with the MW because we didn't know he hwad a CHD despite getting a level 2 u/s. When he started to show signs of sickness it was the MW who initially evaluated him and sent us to the ER. Then when the ER wanted to send him home she came and helped advocate for him. So because she was such a big part of everything she wanted to see the records too and she helped me write the letter to the ER afterwards.

[heartmommyak]

We're lucky because we have a great cardiologist. I know he'll answer any and all questions I have (as long as it's something he can give an accurate answer to). My dh and I are so opposite when it comes to this, but dh doesn't ask questions and figures we're told what we need to know... but myself, I need to ask questions and find out more. I'm most curious about everything that happened in the OR, once my dd was in the PICU and regular floor, I was with her 24/7.

And $400 for your kid's medical records??? That just seems outragous.

I keep thinking about exactly what do I want to know. Will it give me closure in sense? I may just tell the cardiologist that it's important for me to know more about what happened in the OR, whether it be through him and I having a conversation or through her medical records... things like how long was she on bypass, how big was her hole, thymus total or partial removal, what exactly where the other things they found while operating, any complications during surgery. Sorry, I typing as I think... I don't think he has the full records from her surgery. Before leaving the hospital, I asked about that and they told me he can request a full copy of her records from the hospital... otherwise he'd get the usual condensed version.

Can I just ask how good it feel to be able to "talk" with others who have been there?

Jilian... it sounds like you have a wonderful midwife. You don't hear about someone going the extra mile like that (thank God she did). I'm assuming you stayed with the midwife for your dd. Do you mind me asking if you gave birth in a hospital or birthing center or home? I'm asking because I really want to go with a group of midwives for my next pregnancy and birth, but then the only option is home (which I won't do unless my labor is truly that fast) or a birthing center (dh is not on board at all with anything but a hospital birth)... I'm torn on whether I should just stay with my OB or go with the midwife (and get dh on board with whatever choice). And I figure as a heart mom, you can give a unique perspective.

[heartmommyak]

Hi, nice to talk with another heart mom from alaska. My dd's surgery was just after her first birthday so things weren't as crazy right from the get go. We had a wonderful experience at Portland... did you go back for the subsequent surgeries?

I kept a caringbridge page for dd mostly around the time of her surgery, and looking back on it is interesting. Milestones were so important then... first it was get to a certain age, then keeping her on the growth curve, then getting through surgery, getting discharged from the PICU, discharged from the hospital, the thumbs up from our local cardiologist, six weeks post op, six months... once I got to six months post op, for me I felt a huge sense of relief. Seeing dd reach all of those developmental milestones too is the most wonderful feeling. Those days when you don't think or worry about the heart, like you said, are wonderful. We're now 15 months post op.

Originally Posted by mama crane

Heartmommyak...I am in AK as well. I completely understand so much of what you posted. We, too were totally overwhelmed with our DS's 1st surgery. He was diagnosed 1 day postpartum and that night we were lear jetted to Portland. The situation was so dire at that time all we could think of was to keep him alive, yk? I was so tired from birth, I had a gazillion stitches, was bleeding and somehow how to learn how to pump and then breastfeed a sick baby...and hobble from the RMH all the way up to the PICU every day.
Nearly 10 years later, I still have a hard time processing and that has affected how I could handle the other 2 surgeries and Cardiac Cath's....which is to say...not very well
My son has done very well with his anatomy and I am thankful for that, but I feel so much for you mamas going through these first few months I know how hard it is but it does get better....and there does come a day or week when you realize that you haven't thought about the HEART at all and those are good days

[Jilian]

I went with the same midwife for dd's birth and had a homebirth. DS2 was a homebirth as well. I did have a consult with a perinatologist to rule out another heart defect. I had the normal 18 week anatomy scan and they paid extra attention to the heart. Then we had a 22 week fetal echo where they studied only the heart via ultrasound. They were able to tell me with 99% certainty that the baby did not have a heart defect and I was comfortable to give birth at home after hearing that. Of course I monitored dd more carefully after birth by checking her heart and temp almost compulsively for the first week.

In the beginning of my pregnancy I was a bit scared so I decided to get the hypnobabies home study course to ease my anxiety. My MW suggested it and it was just what I needed. I was having a lot of nightmares about something being horribly wrong with the baby before starting hypnobabies. After the 18 week u/s I let go of a lot of the fear and after the 22 week echo I was no longer afraid. When I went into labor I had no fears of having a sick baby at all. I was pretty positive she was completely healthy and she is!

For me the idea of having another baby was scarier than actually having another baby. When it came time to have the baby all of the fears that I worried about having were not there.

[rozzie'sma]

Originally Posted by FaithfulOne

Unique scars they are
My ds has both, sternum incision for his OHS to repair the VSD and the Thoractomy for his CoArc. His sternum incision is about 4" with a little Q-tip shape at the top (I think they accidentallly tucked his skin when stitching and it created a small buldge) and the side one is almost the entire length of his lower shoulder blade. He also has two little scars at the base of the incision where his drainage tubes were.

ETA: I also read a story about a little girl who got her incision through her back, this way as an adult female she wouldn't have a scar between her breasts.

Zann has the mid-sternal and Left thoracotomy as well. I have to say the mid-sternal healed much faster and has left a better looking scar. I was so scared during the left thoractomy because of the chance of paralysis. The first thing I said was, "Has he moved his feet yet?" He has had a CoArc repair, a VSD repair, and a subaortic membrane resection. He has a HLHS variant, he is small but functions better on a tiny left ventricle than on a Fontan because the right side of his heart does not function well. They think he will end up on the transplant list eventually.

[heartmommyak]

Originally Posted by Jilian

I went with the same midwife for dd's birth and had a homebirth. DS2 was a homebirth as well. I did have a consult with a perinatologist to rule out another heart defect. I had the normal 18 week anatomy scan and they paid extra attention to the heart. Then we had a 22 week fetal echo where they studied only the heart via ultrasound. They were able to tell me with 99% certainty that the baby did not have a heart defect and I was comfortable to give birth at home after hearing that. Of course I monitored dd more carefully after birth by checking her heart and temp almost compulsively for the first week.

In the beginning of my pregnancy I was a bit scared so I decided to get the hypnobabies home study course to ease my anxiety. My MW suggested it and it was just what I needed. I was having a lot of nightmares about something being horribly wrong with the baby before starting hypnobabies. After the 18 week u/s I let go of a lot of the fear and after the 22 week echo I was no longer afraid. When I went into labor I had no fears of having a sick baby at all. I was pretty positive she was completely healthy and she is!

For me the idea of having another baby was scarier than actually having another baby. When it came time to have the baby all of the fears that I worried about having were not there.

We're planning on doing the fetal echos, and my dd's cardiologist said he'd check the baby out if we wanted him to.

Thanks for sharing your experiences. It helped to answer some questions I had.

I checked our new insurance's ppo, and there aren't any local midwives listed. So I may just have to stay with my current OB anyhow. Things could change though by the time I need prenatal care so we'll see.

[heartmommyak]

So dd had her annual cardiologist checkup today. First off, we don't go back for a whole two years. He answered my questions (except ones he didn't know and has to check with the hospital to find out). He told me her VSD was just over 7 mm. He didn't know about bypass time or thymus either. Two things we have to have monitored are her 1)coronary arteries (compression is possible as she gets older, her coronaries aren't normally routed but functional) and 2)possible obstruction (from scar tissue)of blood flow near the aortic valve. If either become issues, OHS can fix it (I hate the thought of her going through another heart surgery of course). And he said she has a normal murmur that kids her age have and is of no concern. Overall, how she's doing is the best possible case for a child with her CHD. And she did excellent for her echo and pulled off her EKG stickers once the nurse was done. She has a juxtaposed right atrial appendage... has anyone else had any experience with that?

[Lindsay1234]

Love reading all these good news replies!

Just wanted to say Happy Holidays to everyone! I just have so much to be thankful for this year. Its been so rough and its going to be crazy for a while but Sophia is worth all this trouble. Im just so thankful for modern medicine and the people who choose to learn it!

[Jilian]

Happy holidays to you too! I feel the same way. Thank God for modern medicine, without it many of our children would not be here today. :

[rozzie'sma]

Originally Posted by Prensa

pumping and bottle feeding with fortified BM to 26 cal/oz with enfamil (UGH!!!) every three hours, 48cc minimum. yup, brutal.

I do nurse for comfort occasionally, even though I'm not supposed to, but it's good for me to see she still can nurse.

I had to pump and fortify with Zann until he was 5 months old and had his second surgery. After that he took off growth wise (flew up to 95%) and I was able to just bf him. He still nurses at 2.5 years so I would let her nurse some too. I used to pump all day and nurse at night. It is important for baby to still nurse at the breast some so that your antibodies are specific to her needs.

[langyork]

I didn't know about this thread! My dd had heart surgery at birth, coartaction of the aorta, she's fine now. It was traumatic at the time. She had her surgery at U of M. Anyone else had their dc's surgery there?

[langyork]

Does anyone think their babes defect was caused by ZOloft or other antidepressant? I do.

[LauraLoo]

Originally Posted by langyork

Does anyone think their babes defect was caused by ZOloft or other antidepressant? I do.

I wasn't on any prescribed medication before or during pregnancy, so it wouldn't have been a consideration in our case. I did take a few sudafed tablets (considered safe at the time) but nothing else OTC, either.

[Lindsay1234]

I took nothing besides prenatals and folic acid 3 months before conceiving and up til about the 4th months when I took ONE baby tylonol for extreme back pain.


HAPPY NEW YEARS EVERYONE!

[Prensa]

hey mamas, I know its been busy but I just wanted to bump this so it doesn't get lost!

since I posted last we are nursing exclusively! so happy to get rid of the bottles and Enfamil!! and she weighed in at just over 9lbs today, oh yeah! Things are going really well, I'm even gonna take her on a trip come Feb to visit my Grandma

hope everyone else is doing well too and had nice holidays!

[Jilian]

Originally Posted by Prensa

hey mamas, I know its been busy but I just wanted to bump this so it doesn't get lost!

since I posted last we are nursing exclusively! so happy to get rid of the bottles and Enfamil!! and she weighed in at just over 9lbs today, oh yeah! Things are going really well, I'm even gonna take her on a trip come Feb to visit my Grandma

hope everyone else is doing well too and had nice holidays!

AWESOME!

I also didn't take anything during DS2's pregnancy. I was on depo provera a year before conceiving him and it screwed my body up pretty bad so I've always wondered if that could have caused it. I also miscarried the cycle before getting pregnant with him.

[lilli'smom]

Wow...I am so glad to have found this thread.

Last Feb, our brand new pedi noticed a murmur during my now 6 year olds school exam. It had never been noticed before.

After several Echos and a month of fear, we found out that our son has a Bicusped Aortic valve and it was in bad shape. I was not closing at all and he had a severe regurgitation back to the left ventricle.

We never saw ANY signs of illness. Nothing!

So in April, we wisked ourselves to Arnold Palmer in Orlando for his surgery. I hated knowing that my baby was on a table with his heart bypassed and not beating.

We found out that it was a congenital defect and they were able to repair it for now. It still isn't 100% and he will most likely have to have a valve replacement during his teens.


I just wanted to give props, too, to the staff at the hospital and to the folks at the Ronald McDonald House at APH! Everyone was WONDERFUL!

[hummingmom]

Wow, lillismom, that must have been hard, having it come out of nowhere like that.

Am I the only one here who worries about the possibility of their other ("healthy") kids having undiagnosed CHD? I sometimes feel this way about my two boys, especially. One gets winded easily, the other had cold & blue feet for the first 6 months. The doctor says their hearts sound fine, so I try to put the idea out of my mind, but it comes back every time I hear a story like this one. Or, much worse, when I read about those poor kids whose heart problems are never noticed, until they suddenly drop dead while playing sports in adolescence.

The second article above says that in Italy, they've cut the rate of this type of sudden cardiac death by 90%, by requiring a screening EKG for participation in organized sports. Something worth thinking about here, too.

Sorry for raising that not so cheery topic... just something that's been on my mind.

Hope everyone's little heart warriors are doing just fine.