The "heart" thread (CHD) - Mothering Forums

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#1 of 171 Old 09-19-2009, 11:18 PM - Thread Starter
 
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Hey mamas,,

Not sure if there has been a heart thread in a while? I have a question though. Have any of you ran across any good children's books that have to do with open heart surgery/CHD's/on-going cardiologist appointments? I have googled and amazon-searched but have yet to find anything (except more generic ones like Franklin goes to the hospital and books about getting your tonsils out).

My ds is now 2 and is starting to ask more questions (he has a TON of language and understands a lot as well). Ever since he was a baby after his surgery we'd randomly talk to him about it...such as during bath..."oh here is your scar from when you had your heart fixed at the hospital" Obviously we don't go into gory or scary detail, but we want him to somewhat understand that his heart was "special" and now we visit the heart dr. sometimes because of it. He actually has a heart apt on Monday so I told him that we'd be going to see his "special heart doctor" and he started asking "why" and looking more closely at his scar and i could see the little wheels in his head turning and feeling more curious about all of it.

So ANYWAY, have any of you had any luck finding books? cartoons? etc. that I could read with/show ds that might help him understand a little more. He also seemed a little nervous when I told him about the upcoming apt. I tried to explain what they might do (such as the ekg) "put little stickers on your body and little clips but they won't hurt.." etc. But i'd LOVE to be able to actually show him a picture or video or something when/if he asks.

Thanks!

And how are you all? I haven't been in this forum for a while!

me, dh and 2 boys = our family (oh and a cat...who is also a male...lol)
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#2 of 171 Old 09-20-2009, 03:44 AM
 
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Ooooh Ill be watching for this book!! My ToF babe is 4 months old and had surgery for a temp shunt at 6 weeks old. Id also love to find a book for parents about parenting a cardiac kid. It seems like none of the parenting or special needs books apply to cardiac kids and its SO common!

This is the one we were given

Simple and put my 7 yr old dd at ease about what they were going to do to her sis. VERY likable character!

wife. dd1 : dd2
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#3 of 171 Old 09-20-2009, 03:51 AM
 
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holly - we were given one from her cardiologist, when she was diagnosed. I gave it away though, and i don't remember the name. sorry but perhaps you could ask at the appointment on monday? good luck!
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#4 of 171 Old 09-24-2009, 03:55 PM
 
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I couldn't find any good books recommedations but I would just talk to him about it. My 2 year old had his third open heart in June and we were honest with him about it. I was really surprised about how mature he was, he actually walked into the OR holding the anaestesiolgist hand, layed down on the table, and held his own mask. For trips to the PC I just tell him we are going to get more pictures taken of his heart. The biggest thing is I have never lied and somthing wasn't going to be painful when it was so when I say we are just getting pics, nobody is going to stick you, he believes me.
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#5 of 171 Old 09-24-2009, 03:56 PM
 
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Oh and if you have a heart journal of his story read it to him. Zann loves looking at his carepage and having me tell him what they did to fix his heart.
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#6 of 171 Old 09-24-2009, 05:59 PM
 
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Had an echo done yesterday and Sophia probably needs a heart cath before the full repair. Otherwise, her defect (ToF) is pretty straight forward case.
Why does it have to be so dang hard for that little girl?!

wife. dd1 : dd2
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#7 of 171 Old 09-28-2009, 04:50 PM - Thread Starter
 
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rozzie'sma: we definitely talked and talked and talked about it. I was just thinking that a picture book of another little kid going through the tests and all that might be comforting to him. I never though of showing him the story and pictures off of the carepage we made, that is a great idea!


Lindsay1234: My son has TOF too! Feel free to ask me any questions you might have...where will her surgery be? I HIGHLY recommend Boston if you are anywhere near the area. I'll be thinking of sweet little Sophia!


Well, just thought I'd also update on Nolan's heart appointment.

He did GREAT! He had an ekg and everything looked good. The nurse was so impressed with how still he was she said she was going to nominate him to be a model patient so they can make a video and show patients how to lay still (joking of course but it was sweet). She also told him he did better than most ten year olds. lol.

Anyway, the ped cardiologist said that he was going to wait until Nolan was 3 to get another Echo, but since he did so well with the EKG we'd give it a try and if he was too squirmy, no big deal we'd just stop.

Well, they put on a bob the builder movie for him after I told them how he likes "tool work stuff" and he laid perfectly still for almost an HOUR!! A two-year old! my crazy-run-all around two year old! lol. So they got all the pictures they wanted to see and it went so well!

They said the only thing they are "watching" is the shape of his blood vessels going into the lungs. Instead of going down like a gradual upside down "V" the one on his right side very sharply sticks straight out. The dr. was saying how we need to watch it as he grows because it could become "kinked" and then he would need surgery via the cath lab. BUT he said he doesn't think it will come to that AND as of right now there are ZERO restrictions for Nolan. he can run and play like a "normal" kid. So all in all, very good appointment!!!


How is everyone else doing? Maybe we could do a little "heart roll call"

My name is Holly, my son Nolan has Tetralogy of Fallot. His heart was repaired in Dec 2007 when he was three months old at Boston Childrens. He is now 25 months old and doing AMAZINGLY well!

me, dh and 2 boys = our family (oh and a cat...who is also a male...lol)
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#8 of 171 Old 10-03-2009, 03:45 AM
 
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Hi Holly! lol

Im Lindsay and my 5 month daughter Sophia has Tetralogy of Fallot with pulmonary stenosis. She is also an un-diagnosed Digeorge/VCFS. She had a shunt put in at UC Davis in Sacramento when she was 6 weeks old. We are waiting to hear if she needs the cath. Im not too worried about it, her doc is amazing and I fully trust him. Plus, shes been through a LOT, this will be small potatoes!

GREAT news about Nolan!!!!!!

Hearing other successful heart kids gives me such hope and JOY!!!!!!

wife. dd1 : dd2
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#9 of 171 Old 10-05-2009, 01:12 PM - Thread Starter
 
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Lindsay, where are you from?

me, dh and 2 boys = our family (oh and a cat...who is also a male...lol)
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#10 of 171 Old 10-05-2009, 03:55 PM
 
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Lindsay, where are you from?
Im here in Sacramento! (and have been most of my life)

wife. dd1 : dd2
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#11 of 171 Old 10-06-2009, 11:10 PM - Thread Starter
 
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I wish some of us heart mamas lived closer together :P


Any other heart mamas out there for roll call??? Don't be shy!

me, dh and 2 boys = our family (oh and a cat...who is also a male...lol)
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#12 of 171 Old 10-08-2009, 11:50 PM
 
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I'm a heart mama, although my sweet baby hasn't yet been born, and I'm soooo scared!

I'm due the beginning of November and found out at the 20 wk u/s that there is a defect, got a diagnosis of Ebstein's Anomaly and have just been trying to learn as much about it as possible.

At the beginning of September my baby started showing signs of congestive heart failure and they really haven't been too optimistic about the outcome since then, right now I go down for u/s twice a week to monitor stuff, and I'm seeing the cardio for echos about once every two weeks.

We have decided not to take this baby out early but rather give him or her the greatest amount of time on the inside so that he or she can grow as much lung as possible (one aspect of Ebstein's is an enlarged right atrium that doesn't leave much room for lung tissue to form in the chest) so right now I'm just hanging in there hoping to get as far along in this pregnancy without having the baby be in danger of hydrops and heart failure...not much longer now though!

I'm happy to see a new thread!

6/9/2005 6/30/2007 10/17/2009 (Ebstein's Anomaly)
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#13 of 171 Old 10-09-2009, 12:54 AM
 
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Yep, I'm a heartmama!

One book that used to be passed around in support groups (but I never saw it personally) was called "Matty's Heart". Here is a link to a site just for books related to heart issues, including Matty's Heart for sale:

http://zbchde.homestead.com/store.html

My own ds has never been very curious about his heart mechanically. He has never asked about his surgeries although he's heard me talk about them to other moms and has a very clear understanding of it all. He only remembers a few things clearly from the last surgery (age 4) , because after all, they are on so many painkillers and sedatives. I make it a point to be sure he can recite his diagnosis, just because at his age he really should know it.

We always talked about his heart as something to be proud of, and made it seem almost macho that he went through heart surgeries, because I do think it is important to consider that there is a fine line between feeling like a victim and feeling empowered. I did not want ds to feel like the victim of anything, at all, ever.

I guess that is the point. Empowering him. Whatever makes him feel confident talking about it, we go that route. Even if it makes me squirm a bit to be so cavalier, it works for him. For ds the whole "You should have seen the other guy" attitude made the scars no big deal (he has a lot of scars). So if kids saw the scars he would be like "Yeah, I do have a lot of scars, but you should have seen the other guy!" (if he wanted to joke) or just a straightforward "Yeah, I have a lot of scars, and so will you if you ever have heart surgery", which kind of shut kids up and made them think (after all, who can know for sure they never will need heart surgery?).

It is interesting to me that if ds watches a movie about a typical kid who sticks up for a weaker/sickly/different kid then ds identifies with the typical kid. I just find that fascinating, considering all he's gone through.

Ds was much more upset by his migranes. He had them badly around age 4-7 and I remember him once getting really upset when a migrane started and saying "It is NOT FAIR that most people just have one thing but I have TWO THINGS now, Migranes and heart surgery, and that is just not fair!" and he was very upset. I said it was true, that was not fair. But I asked him to remember there are kids with three, four, five, six things. With my own ds it helps if he is given that kind of viewpoint. It calmed him down and he felt better. That's the only time I ever remember him feeling sorry for himself.

More recently--ds found out this week that he will be going to Japan with Make-A-Wish!!!! I need to go update my thread about it. He is VERY excited! I definitely encourage anyone interested to keep Make-A-Wish in mind. We knew about it from the start but I wanted to wait to contact them when ds was old enough to remember the wish he made.

Mother is the word for God on the hearts and lips of all little children--William Makepeace Thackeray
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#14 of 171 Old 10-09-2009, 06:18 PM
 
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I am a heart Mom too My son, Connor, is now 6 1/2 and had a full repair of TOF at 4 mos old in NYC (CHONY). In terms of his heart, he is doing so well, to date we haven't had any issues post repair and he is a super active and healthy boy. He doesn't have any restrictions on his activity level. He's in an integrated 1st grade and is currently playing soccer.

He has never really asked about his heart, noticed his scar or otherwise been interested. He too hears me talk to others about his surgeries, etc and I occassionally bring it up to him, just to lay the ground work. He has seen photos of himself in the hospital and we go for yearly cardiology check-ups, but he doesn't seem too impressed lol

He was so young when he had his repair, so my books are more geared towards the parents, more reference like for the mechanics of the heart.

Prensa, congrats on the pending arrival of your sweet baby! I also found out at my 20wk u/s about my son's heart defect, it was terrifying!!
I used to visit a site called littlehearts.net...they have a lot of information and various ways to "meet" other parents who have kids with CHD's. You can request to find someone with a similar diagnosis. I hope the best for your baby.
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#15 of 171 Old 10-16-2009, 03:35 PM
 
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Scheduled the full repair for Sophia! It will happen on Nov 24th, she will be 6 and a half months old. They are REALLY confident about the procedure because she is in great health right now!

Were VERY excited. The worst part for me is signing the consent. This time she will go on bypass so I literally have to give my permission to stop her heart. Worst.part.ever.



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#16 of 171 Old 10-16-2009, 09:44 PM
 
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Scheduled the full repair for Sophia! It will happen on Nov 24th, she will be 6 and a half months old. They are REALLY confident about the procedure because she is in great health right now!

Were VERY excited. The worst part for me is signing the consent. This time she will go on bypass so I literally have to give my permission to stop her heart. Worst.part.ever.


Congrats on getting it scheduled. My DS2 had a quad bypass when he was 15 days old. Hearing that the heart has been stopped is the scariest part, but in our experience he was only on bypass for 45 mins. They do it as fast as possible to minimize time on the heart lung machine.

I'm a heart mama too. I've chatted with a few of you before : DS2 had/has Total Anamolous Pulmonary Venous Return (TAPVR) and we didn't know until he was 2 weeks old and he had an emergency repair at 15 days old. It has really been smooth sailing since then. This kid is amazing and lucky. We had the sedated echo in May and they bumped him up to yearly appointments. It is exciting and scary all at the same time!

Hi Prensa! I'm not familiar with that particular defect, what does it involve exactly?

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#17 of 171 Old 10-17-2009, 01:14 AM
 
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DS is coming up on his 8th anniversary next month - OHS to repair a VSD when he was just 5 mos. (He also had bypass.) It seems so long ago. He has no restrictions and is considered fully resolved.

My father took a lot of pictures while ds was in the hospital throughout the whole stay and we made a scrap book. Once in awhile ds will take it out and look at it. I suppose that it could be frightening to some dc's, but ds and dd both look at it. He is not self-conscious about his scar, it's been a part of him for almost as long as he's been alive. I don't really even see it anymore. Time has given us peace.

Hugs to all the heart mamas and heart dc's.

Laura - Mom to ds (10) and dd (7) "Time stands still best in moments that look suspiciously like ordinary life." Brian Andreas.

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#18 of 171 Old 10-17-2009, 05:37 PM
 
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I'm so happy to hear that he doesn't mind his scar. I worry that my little guy will be self conscious about his. We did the scrapbook thing too but made it on Snapfish, it came out really nice and we're going to give it to DS when he's older. We made it a little story about a brave warrior because DS's name means "warrior"

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#19 of 171 Old 10-18-2009, 10:36 AM
 
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hi again, thanks for all the warm welcomes...I am back to say that my baby is here, she's a tiny lil thing born at almost 38 weeks and 5lbs 5oz. she's about 29 hours old and hanging in there. Her defect, Ebstein's anomaly, is a tricuspid valve defect where the leaflets don't form correctly and cause leakage back into the right atrium. This causes the atrium to become enlarged and also because the pressure is not great due to the leak, there is no forward flow through the pulmonary valve. So she can't oxygenate very well on her own. Right now we are waiting for the ductus to close to see how that will affect the pressure and we'll be able to make decisions based on that.

I am just thrilled that she's here, they told me at about 30 weeks that they didn't expect her to even make it to birth and I spent every pregnant day since then so so worried and always wondering how she was doing. It's a blessing just to have made it this far and get to meet her.

we are lucky to live in New England and have great resources at our local hospital. So far they have not mentioned going to Boston but it's great to know that we are close if they do decide to send us there.

for now I am learning my way around the NICU and everything, pumping to build up a supply and get my milk to come in even though she's not able to eat anything just yet.

I'll be back with updates and to ask questions! I'm proud to be joining this community of heart moms!

6/9/2005 6/30/2007 10/17/2009 (Ebstein's Anomaly)
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#20 of 171 Old 10-18-2009, 11:15 AM
 
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Congrats on your new baby Prensa! I'm glad they have a better idea of what is going on. I hope she does well. My heart baby was very small too, he was born a day after my due date at 6 lbs 4 ozs. I grew up in Boston (but moved to FL 5 yrs ago) and they have the best Children's hospital by far, they have pioneered many of the CHD surgeries and procedures. I'm happy to hear that you are close to them. It sounds like your little lady is in good hands. How are YOU doing? I know it is scary to have such a tiny baby sick, take good care of yourself. Sending healthy vibes to your new baby girl.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#21 of 171 Old 10-18-2009, 03:31 PM
 
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Congratulations Prensa!

You are doing a great job!!!!

Ask anything, Im sure between the heart ladies, we can answer almost anything!

wife. dd1 : dd2
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#22 of 171 Old 10-19-2009, 11:17 PM - Thread Starter
 
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Scheduled the full repair for Sophia! It will happen on Nov 24th, she will be 6 and a half months old. They are REALLY confident about the procedure because she is in great health right now!

Were VERY excited. The worst part for me is signing the consent. This time she will go on bypass so I literally have to give my permission to stop her heart. Worst.part.ever.


I so remember that feeling. I also remember when the nurse came to me and told me, "at this moment your son is on bypass". At the hospital where he had his surgery, they assigned us a nurse who would update us step-by-step where they were at and how it was going. It was absolutely chilling to hear her tell me that in that moment my son's heart was NOT beating. Thinking back, I still get goosebumps! But now he's a happy, healthy, running all around 26month old! So it was obviously all worth it! But still, very terrifying and I wish no mom's had to go through it!!!

me, dh and 2 boys = our family (oh and a cat...who is also a male...lol)
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#23 of 171 Old 10-19-2009, 11:20 PM - Thread Starter
 
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hi again, thanks for all the warm welcomes...I am back to say that my baby is here, she's a tiny lil thing born at almost 38 weeks and 5lbs 5oz. she's about 29 hours old and hanging in there. Her defect, Ebstein's anomaly, is a tricuspid valve defect where the leaflets don't form correctly and cause leakage back into the right atrium. This causes the atrium to become enlarged and also because the pressure is not great due to the leak, there is no forward flow through the pulmonary valve. So she can't oxygenate very well on her own. Right now we are waiting for the ductus to close to see how that will affect the pressure and we'll be able to make decisions based on that.

I am just thrilled that she's here, they told me at about 30 weeks that they didn't expect her to even make it to birth and I spent every pregnant day since then so so worried and always wondering how she was doing. It's a blessing just to have made it this far and get to meet her.

we are lucky to live in New England and have great resources at our local hospital. So far they have not mentioned going to Boston but it's great to know that we are close if they do decide to send us there.

for now I am learning my way around the NICU and everything, pumping to build up a supply and get my milk to come in even though she's not able to eat anything just yet.

I'll be back with updates and to ask questions! I'm proud to be joining this community of heart moms!
oh my goodness! Congrats on your sweet baby! I live in Vermont...where in New England are you? PLEASE let me know if there is anything I can do to help!! Do you need anything? Honestly if anything at all please let me know!!

me, dh and 2 boys = our family (oh and a cat...who is also a male...lol)
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#24 of 171 Old 10-20-2009, 10:48 AM
 
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I so remember that feeling. I also remember when the nurse came to me and told me, "at this moment your son is on bypass". At the hospital where he had his surgery, they assigned us a nurse who would update us step-by-step where they were at and how it was going. It was absolutely chilling to hear her tell me that in that moment my son's heart was NOT beating. Thinking back, I still get goosebumps! But now he's a happy, healthy, running all around 26month old! So it was obviously all worth it! But still, very terrifying and I wish no mom's had to go through it!!!
We had the same thing, the nurse called us during the surgery to update us and I remember her telling me that the trickiest part was getting on and off heart and lung machine. I held my breath knowing he was coming off and prayed that his little heart would beat on its own. I almost wish they didn't tell me because that was a scary half hour! I later learned that they have pacemakers in case the baby's heart doesn't start up well or beat fast enough. They had to pace DS from 120 to 140 for an hour or so. I think it is somewhat standard to have a bypass baby come out with pacemaker lines directly into the heart - did your son have that too? They didn't remove DS's until about 5 days post op

Our little ones are close in age, my guy is 28 mos.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#25 of 171 Old 10-20-2009, 09:02 PM - Thread Starter
 
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Yes! I do remember those wires! I was very excited when they came out!!

me, dh and 2 boys = our family (oh and a cat...who is also a male...lol)
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#26 of 171 Old 10-21-2009, 02:50 PM
 
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So Sophia is about to grow out of her bucket style car seat and Im wondering if there is a style favored by heart mamas? Im not sure she will fit in this seat, length wise, all the way to 6 weeks post op. (that would be 10 weeks from now, she might be able to squeeeeze into it still)
It is SO hard to "scoop" her out of this one too! She was in the NICU the last surgery so Im lost thinking of having a post-op baby at home!

Also, did anyone get handicap placards? Should I ask for a temp one? She has a gtube too so its especially hard getting the baby/carseat, gtube backpack out of those teeny, tiny parking spots.

wife. dd1 : dd2
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#27 of 171 Old 10-23-2009, 12:31 PM
 
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oh my goodness! Congrats on your sweet baby! I live in Vermont...where in New England are you? PLEASE let me know if there is anything I can do to help!! Do you need anything? Honestly if anything at all please let me know!!
thanks Holly! we're in Maine, and today she is six days old and having open heart surgery RIGHT NOW. so I'm online trying to distract myself from the waiting..

(they are doing a BT shunt, closing her ductus, enlarging the hole in her atrial septum, reducing the size of her huge right atrium and patching over the leaky tricuspid valve...whew!)

I don't need anything right away, but I'm sure I'll be back with questions!

6/9/2005 6/30/2007 10/17/2009 (Ebstein's Anomaly)
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#28 of 171 Old 10-23-2009, 01:42 PM
 
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Originally Posted by Prensa View Post
thanks Holly! we're in Maine, and today she is six days old and having open heart surgery RIGHT NOW. so I'm online trying to distract myself from the waiting..

(they are doing a BT shunt, closing her ductus, enlarging the hole in her atrial septum, reducing the size of her huge right atrium and patching over the leaky tricuspid valve...whew!)

I don't need anything right away, but I'm sure I'll be back with questions!
I'll keep you and your little one in my thoughts all day. Update us when you can. I hope the surgery goes well and she recovers quickly and you are snuggling her again soon. Feel free to ask any questions, lots of us have been there. Lots of hugs to you and your little one. :

Car seats: we went to a Britax Marathon when DS2 outgrew his bucket. I'm not sure it is better for heart babies but we liked it because it is a really safe seat and lasts pretty much up until he's ready for a booster.

Zen doula-mama to my spirited DS1 (2/03), my CHD (TAPVR) warrior DS2 (6/07) & a gentle baby girl (8/09)
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#29 of 171 Old 10-24-2009, 12:57 PM
 
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Kelsey here!

My 4yo ds had OHS at 18mo to repair a moderate VSD and CoArc. He is now being monitored for a Bicuspid Aortic Vavle and newly discovered Subaortic Stenosis.
We too created a scrapbook of pictures. We gave a copy to the Heart Ctr where we went so they could show other parents going through similar surgeries with a child his age (most that need those repairs are newborns/young babies) Our copy for the Dr's was a bit more graphic than the one we keep at home but thats so parents can see *real* pictures of recovery. Ds loves to look at his pics, he's proud of his *zipper scar* as he words it.
I haven't ever seen any published books so I'd love to hear some suggestions

Nice to meet you all

wife & mum to 9yo dd, 7yo ds1 & 5yo ds2 and our rescue dog Roger!
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#30 of 171 Old 10-24-2009, 10:27 PM
 
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My DS who will be 10 in January has Hypoplastic Left Heart Syndrome. He had his first repair at 3 days old, 2nd repair at 6 months and 3rd at 6 years. He also has a stent in his aorta for a pseudo coARC and what his cardiologist refers to as "wanna be Protein Losing Entoropathy" meaning his albumin (protein levels) are boderline low. All told he is doing very well. He is a gifted artist and is just a funny guy.
We have always been very honest about his heart anomaly. He knows how serious his condition is but it really doesnt seem to bother him much. He does get grumpy about the way he needs to eat to keep the protein levels in the right range (low fat/high protein) but I like to remind him that lots of people have dietary restrictions and really, his is not that bad as there is wiggle room from day to day.
We have been told that this is the most serious heart anomaly and as such get a lot of weird attention from nurses and doctors which I dislike but my son loves I am happy that he doesnt realize that we are a novelty because this is a fairly rare anomaly and he has had fairly rare longevitly.
Despite all of this, our day to day is very normal. One of his friend's mother is a nurse and I had to tell her about his heart...meaning she couldn't tell because he looks and acts like any other 9 year old boy

My DD who will be 8 in November was 6.5 weeks early and had a CoARc. Her heart was repaired at about 1 week . She is doing very well and has follow up cardiac consults about once a year. Her scar is beneath her shoulder blade..I dont think most people even notice it.
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