Wanna start a "heart" thread? - Page 4 - Mothering Forums
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#91 of 100 Old 10-16-2008, 04:45 PM
 
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Originally Posted by tessajo View Post
Hi there,
My daughter was diagnosed with an AV Canal at birth and went through her open-heart surgery to repair her defect at 3 months of age. She is doing great now, but it was a terrifying experience. My husband and I feel we were put through this experience because we are meant to help others going through open-heart surgeries with this little babes. I recently started a website for congenital heart defect support (www.chdsupport.blogspot.com).
Anyways, I would love to join this thread--I am new to this site and am not sure how this all works, but keep me posted!
Cheers,
Lindsay
Your dd is so beautiful!! I love that picture of her in the grass. What a sweet smile!!


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#92 of 100 Old 10-17-2008, 01:45 AM
 
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So, I've been feeling odd about posting after the 12-month echo. It was fantastic news - the VSD is now so small that she will never need surgery, and he expects it will close on its own completely. I was so happy I cried all the way to the car. No surgery!!! I know so many of you have dealt with or are facing surgery for your LOs, so I don't know if I belong here now.

I will keep up with you all, though!
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#93 of 100 Old 10-17-2008, 04:16 AM
 
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So, I've been feeling odd about posting after the 12-month echo. It was fantastic news - the VSD is now so small that she will never need surgery, and he expects it will close on its own completely. I was so happy I cried all the way to the car. No surgery!!! I know so many of you have dealt with or are facing surgery for your LOs, so I don't know if I belong here now.

I will keep up with you all, though!


That is wonderful news!!

You don't have to leave the thread. Threads like this are not about the end result, but the journey.

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#94 of 100 Old 10-17-2008, 09:48 AM
 
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Originally Posted by veganone View Post
So, I've been feeling odd about posting after the 12-month echo. It was fantastic news - the VSD is now so small that she will never need surgery, and he expects it will close on its own completely. I was so happy I cried all the way to the car. No surgery!!! I know so many of you have dealt with or are facing surgery for your LOs, so I don't know if I belong here now.

I will keep up with you all, though!
That is such great news!!! I'm so happy for you and your little girl Sure you belong here, you understand what it is like to have a child with heart issues. My little guy's heart issues are technically repaired but I still consider him a CHD child - same for your little 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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#95 of 100 Old 10-25-2008, 10:10 PM
 
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My 3 week old DD with VSD and ASD had another cardio appointment today. She held steady at the same weight even with lasix on board, a hopeful sign she is getting enough milk. She is projected to gain slower than other babies, but 20 grams (which is like 0.7ozs) a day on average is acceptable, so we have a goal. He said breastfeeding is best, though he said he would leave the logistics of how to maintain her on breast milk to myself, the pediatrition, and the Lactation Consultants. That is not so good; my ped is clueless about breastfeeding logistics and has already suggested we start supplementing her right now without even asking about how well she is nursing or her weight gain. What is good is that I know 5 Le leache leauge leaders, and have already talked to the lactation Dr who helped me with DD1. If I did not have such great resources I'd be lost on this one already. I found great study on Congenital Heart Dysfunction babies and breastfeeding; I am following the recommendations of that study.

Our ped also recommends we vaccinate, which we don't do at this time...His (the cardio doc) take on vaxs is to follow the AMA guidelines, just because it’s not his area of study. And while if she were to catch RSV (a nax they give to premies and immune suppressed babies) it would be very bad, she does not meet the criteria to get the vax. So he is not really helping us make any decisions in that area. Its up to us and the ped. We need to do some research to decide if her condition makes it worth the risk of vaccinating vs. not at this age.


Surgery could be delayed into April if we wanted, but we are choosing to do it in early January, I am only willing to wait that long because Dh is out of PTO time, but I want it to be over with ASAP. Hopefully surgery at Boston's Children will be covered by our insurance, they are the very best at this in the country and we are lucky to be so close to them. However if it is not covered our cardiologist assures me that her surgery is routine enough that there is one doctor at Yale that would be able to handle it competently. In networking with other CHD families in the area I have been told that experiences at Yale were subpar, though I do not yet know why. I am hoping that our insurance will just cover Boston’s and I do not have to go ask why Yale sucks or if it really does suck.

Otherwise they don't want to see her for 6 weeks. I am buying a scale like my midwife's so I can keep track of our goals and keep the ped off my back about supplmenting before its needed.

All in all I think we are doing okay...right now I am reading a Vax book, after that I need to figure out what questions we need answered next. Any suggestions?
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#96 of 100 Old 10-25-2008, 11:06 PM
 
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I researched the RSV vax a lot last year after DS2's OHS. Here is the site: http://www.synagis.com/how-synagis-works.aspx Scroll to the bottom, second paragraph. It says that in children with heart problems it can lower sats and cause arrythmia - that is why we chose to skip it. They also used to have a warning around it possibly increasing heart rate but I don't see that anymore. I felt safe enough just exclusively nursing and and keeping DS2 in as much as possible during RSV season.

We don't vax. If you decide to, ask a lot of questions. Some vaxes can cause fevers which increase heart rates. Check out the vax forum here, it is great with lots of info! As for pedis, can you find another pedi? Any pedi who would suggest formula without asking any questions first is obviously not too familiar with breastfeeding. In my experience it has been VERY difficult to find a pedi who is knowledgeable about CHDs and pro-natural parenting. Our pedi is more on the natural side but not so knowledgeable with CHDs.

As for the weight, it is great that you baby is at least holding steady! That is a great sign!

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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#97 of 100 Old 10-25-2008, 11:23 PM - Thread Starter
 
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bayleesan--one note regarding vaxing your heart baby...When DS was admitted for his surgery they asked if he had had any recent vaxes and I said 'no' (had hadn't had any since his 2 mo and he was 3 mo at the time of surgery) and they said "oh good!" because most CHD babies need a blood transfusion after open heart surgery and if he had gotten any vaxes they would need to be re-done! yikes!

and for what it's worth, he's only been vax'd against hib and prevnar (twice). We are considering dtap but that is it in total for what we feel comfortable with in regards to vaxing. And we wait like 6 months between vaxes!

me, dh and 2 boys = our family (oh and a cat...who is also a male...lol)
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#98 of 100 Old 10-26-2008, 10:42 AM
 
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Thats good info about vaxs i will keep it in mind thank you.
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#99 of 100 Old 10-26-2008, 05:50 PM
 
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I just want to pop in re:RSV....neither of my kids had the vaccine and both caught RSV, DS has HLHS and was 2 at the time and he did fine it presented as a minor cold. DD was about 6 1/2 wks early and had a coarcted aorta and she caught RSV at the same time (around 4ish months) and did need a nebulizer for a week or so. It was never recommended that they receive the vax, and I am guessing this had to do with the cardiac side effects listed above.
Also, we all caught Influenza B last spring and while it was hellish ( I lost 7 lbs in 4 days!) DS breezed through and wound up taking care of the rest of us!
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#100 of 100 Old 10-31-2008, 04:19 AM
 
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Originally Posted by Bayleesan View Post
My 3 week old DD with VSD and ASD had another cardio appointment today. She held steady at the same weight even with lasix on board, a hopeful sign she is getting enough milk. She is projected to gain slower than other babies, but 20 grams (which is like 0.7ozs) a day on average is acceptable, so we have a goal. He said breastfeeding is best, though he said he would leave the logistics of how to maintain her on breast milk to myself, the pediatrition, and the Lactation Consultants. That is not so good; my ped is clueless about breastfeeding logistics and has already suggested we start supplementing her right now without even asking about how well she is nursing or her weight gain. What is good is that I know 5 Le leache leauge leaders, and have already talked to the lactation Dr who helped me with DD1. If I did not have such great resources I'd be lost on this one already. I found great study on Congenital Heart Dysfunction babies and breastfeeding; I am following the recommendations of that study.

The hospital we go to has a nutritionist group and you basically have a "team" that works with you, so you have a Nutritionist, an OT, and a LC. You mostly see the Nutritionist but the others are availible.

You might consider asking your ped to refer you to a nutritionist in your area. I am surprised they would try to direct that without knowing what they are doing with the CHD.

We have similar issues with the feeding. We have struggled quite a lot to get his weight up but now that they are thinking he might need intervention of some sort for his heart issues we are fortifying my bm in order to boost his weight more quickly.


I hadn't heard that about vaxes and transfusions.

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