The "heart" thread (CHD) - Page 6 - Mothering Forums

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#151 of 171 Old 05-18-2010, 11:01 AM
 
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We had genetic testing for ds and everything was normal. His speech and cognitive development are normal, but he has several seemingly unrelated diagnosis' (heart, hypotonia, and an asymptomatic kidney malformation). If there is a common cause we may never find it.

Mother is the word for God on the hearts and lips of all little children--William Makepeace Thackeray
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#152 of 171 Old 09-05-2010, 04:45 PM
 
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Hey guys! How are all our heart "babies" doing? (theyre getting so old!)

Sophia is doing really great, getting big and really acting like a "normal" kid. Allllllmost walking. So close.

Whats up with your kiddos?

wife. dd1 : dd2
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#153 of 171 Old 09-07-2010, 01:36 PM
 
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Hi, my Sophia (PA-IVS w/coronary fistulae, ADD) is in the 4th grade! In June, she had a complete cardiac check up and also a stress test. That was interesting and a little difficult to see, but she was a trooper.

Laura
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#154 of 171 Old 09-12-2010, 01:42 PM - Thread Starter
 
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Originally Posted by Lindsay1234 View Post
Hey guys! How are all our heart "babies" doing? (theyre getting so old!)

Sophia is doing really great, getting big and really acting like a "normal" kid. Allllllmost walking. So close.

Whats up with your kiddos?

We just had Nolan's 3 year old wbv and he is doing great! He is in the 90%th for height and 60%th for weight. His ped (well she's a family dr. actually) was like "so much for being a cardiac kid huh?" since they typically seem to be small. I'm not sure when our next pediatric cardiologist visit is... It has been about a year so i'm assuming soon!

Here is a pic from his 3rd bday:

http://www.facebook.com/photo.php?pi...8d&id=68900486

me, dh and 2 boys = our family (oh and a cat...who is also a male...lol)
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#155 of 171 Old 11-16-2010, 12:19 AM
 
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Julianne is doing really well too, she just had her first birthday in October, yay! and then a well check last week, she's definitely a smaller kiddo at only 17lbs she's in the 5th percentile for weight although at 30 inches in in the 75% for height (tall daddy).

 

she's cruising on the coffee table and speed crawling across the floor, into everything, loves music and is so super smiley and happy people ask me all the time "is she always like this?" and the truth is yeah, she's a happy kid!

 

we don't go see the cardiologist until January. She still needs to have a Fontan probably at some point, hopefully not for a few more years...her hands and feet turn really purple in the cold, but I don't see it affecting her energy levels just yet. It's gonna be interesting to watch this girl grow up, I was just telling my husband tonight that I still haven't really come to terms with the fact that she's here with us, I dunno how to explain, but there was so much anxiety surrounding my pregnancy and her birth, I am just now opening my mind to the idea that we have 3 kids, like sometimes I see them all together and it just blows me away. for such a long time I never thought we would make it to this point...anyway, maybe you know what I mean. she is proving everyone wrong just by living her life...go Julianne!

 

 

Nolan's big smile is so so sweet, happy 3rd birthday big guy!!


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#156 of 171 Old 12-18-2010, 06:42 PM
 
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Hi Ladies!

 

I just found this thread. DD is 3 years old and was born prematurely (34 +5) weighing 4lbs 8oz. We stayed in the NICU for 3 weeks. She was born with choanal atresia (a membrane was blocking her nostril so she couldn't use it to breathe). A few weeks later, we heard a murmur. The pediatric cardiologist said it was an ASD and we'd wait until she was about 4 to check it out again. We just went for a visit with a new PC and he said the ASD is still there but heart function was normal (even some readings he got perfect). The size of the ASD is bordeline requiring treatment so we are going back in the summer of 2012 to have it looked at again. She also has poor muscle tone. Her speech was delayed a bit but after the surgery for the choanal atresia, it was quick to pick up. She now is working on pronounciation but is doing well with her vocabulary and sentences. Due to her muscle tone, she had delays walking and we did PT to help. She doesn't stop walking or talking now. 

 

We are also expecting a second child in July and I talked it over with my mw and we are going for a fetal echo. I am really scared about it. DH's brother was born with transposition of the greater arteries. He is 26 now after many surgeries. 

 

I think I am just worried after all we have been through with DD. Look forward to getting to know all the other heart mamas on MDC.


Nicole: mama to DD and DS, childbirth educator and doula. Dancing the spiral dance of life bellycast.gif

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#157 of 171 Old 12-21-2010, 07:00 PM
 
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I, too, have a heart baby.  DD2 had surgery for a CoArc on her 9 month birthday.  She literally was diagnosed hours before her surgery.  Failure-to-thrive and mommy's persistence finally landed her at Barbara Bush after many long months of thinking she had GERD and being told that her difficulty breathing and blue coloring episodes were due to GERD.  Her feeding difficulties were due to GERD and/or mama's ppd, etc.  So...14 months later and she is doing beautifully.  Smart, no other issues apparent.  It took a full year for her to recover as her left ventricle was extremely enlarged with an ejection fraction of 17%.  We go back to see the cardiologist in March.

 

My son has not been diagnosed with a heart issue.  He did have an echo after DD2s surgery and the cardiologist spent a good amount of time because he thought he saw something, but decided that he hadn't after triple checking.  DS was born with a cystic kidney and mild kidney reflux.  The cystic kidney was absorbed by 18 months.  He had large motor development problems and now we are dealing with spd.  He gets to see the geneticist in January.  DD2 tested negative for Turners and I won't push for anymore genetic testing for her unless she starts to show other problem areas or unless DSs results show an abnormality.


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#158 of 171 Old 12-23-2010, 11:49 AM
 
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I would like to post some good news on this thread.

 

It is now 2 years (Yesterday) we found out how ill our child was, We had no idea what a CHD was, let alone the diagnosis we were about to receive.

 

She had Life-saving surgery march 09 and saw her cardiologist 29th November 2010. 

I was dreading it, Worked myself up so so much, telling myself be prepared for bad news - I had nightly terrors of the cardiologist calling in someone to help and she died there and then!!

 

 

BUT, We had the appointment and it all went well..

 

 

 

He doesn't want to see her for TWO YEARS!!!

 

 

I will always spread awareness, I will always fundraise and I will never give up hoping for a long, healthy future with my special daughter. 

 

 

Lots of love and hugs to other families out there with chd's ruling their lives :( xxxxxxxxxx


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#159 of 171 Old 12-23-2010, 01:40 PM
 
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I'm glad to hear everyone is doing well!My ds(TOF) is doing great,I can't believe it's been over 9 years since his surgery.He's so excited for Santa to come!He came home with a backpack full of little gifts from his teachers and the students!I never got stuff like that when I was in school,lol.

 

We went to parent teacher conferences recently and all his teacher could say were great things about him.He's completly changed since the beginning of the year when his behavior was terrible.He's finally settled in.He's catching up to his peers and getting into big kid stuff!He's not my baby anymore.I want to cry,it went by sooooo fast.He needs to work on reading comprehension,but otherwise his school work is great.

 

He's so excited,his home based theraputic services worker(for his asperger's) is going to be able to take him out fo the house to do things!We're changing from HBTS to PASS(don't remember what it stands for lol) and that is part of the change.This means he's doing very well.His aggression is very limited now.I can't believe how much his behavior has improved.Much less screaming,thankfully!

 

His ped card said everything looks great on his last echo,but she'd like to see him lose a little weight,which we are working on.

 

His geneticist stll thinks everything is connected,the TOF,asperger's,and the problem where his legs hurt quite a bit when he walks for long periods.He has a microdeletion on his 2nd chromosome.I guess we'll never really know.

 

Happy Holidays to everyone!!


Student mama to one awesome,talented and unique dd,15 and one amazing, sweet and strong ds,12(born with heart defect Tetralogy of Fallot,also on the autism spectrum),9 cats,and 2 gerbils.
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#160 of 171 Old 12-23-2010, 02:13 PM
 
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You guys make me tear up happytears.gif BMo5, I'm so happy for you.  I did the same thing in September.  It had been 11 months since DD2s surgery and we had been seeing the cardiologist every 2 months because her heart function had slowed down to no gain.  He thought we would have to at least try a cardiac catheterization in October if things didn't drastically improve.  Well, they did and he doesn't want to see her again for 6 months!  We'll see what March brings us, but my baby is a happy bubbling 2 year old (almost) and just so beautiful, she makes my heart hurt luxlove.gif


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#161 of 171 Old 12-23-2010, 06:01 PM
 
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You guys make me tear up happytears.gif BMo5, I'm so happy for you.  I did the same thing in September.  It had been 11 months since DD2s surgery and we had been seeing the cardiologist every 2 months because her heart function had slowed down to no gain.  He thought we would have to at least try a cardiac catheterization in October if things didn't drastically improve.  Well, they did and he doesn't want to see her again for 6 months!  We'll see what March brings us, but my baby is a happy bubbling 2 year old (almost) and just so beautiful, she makes my heart hurt luxlove.gif



Awww, I know what you mean and I am so pleased for you too!!!

It was stupid how much I worked myself up, crying uncontrollably, thinking it was the end - how stupid!

We're on a further 4 week wait for blood test results (22q11 DiGeorge Gene Deletion Syndrome testing) and that is churning my stomach BUT I have my daughter and I really really really, mustn't grumble!! :D :D

 

I set my facebook status to something I made up if you want to copy it...

 

 

Quote:

Remember: As you're watching your children with joy and love on Christmas Day, there is ALWAYS a family, missing a child. Congenital Heart Defects are the BIGGEST KILLER with infants, be THANKFUL this Christmas for your children, what ever their conditions, or problems - remember that family who'd give ANYTHING to seetheir child again. Copy and Paste this into your status if you agree.


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#162 of 171 Old 12-23-2010, 06:15 PM
 
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I will put that on my Facebook.  I think we're going to test my son for DiGeorge in January when we see the geneticist.  DD2 is doing fine since she recovered, but we have lots of issues with DS.  Large and fine motor development, sensory processing disorder, one kidney, etc.  Plus we have a family history.  My sister died of an interrupted aortic arch 3 days after birth (some of you might remember me as Maine Mama Doula).  Maybe I have DiGeorge?  I know it can be pretty asymptomatic.

 

My son is getting the help he needs though.  He had physical therapy from 9 months until 2 1/2 years and now he will be receiving occupational therapy as recommended by CDS (he's 3).  I have my two oldest in the Head Start program and I am so happy for all the help and support we receive. It's sad to think that there are so many families out there without support.


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#163 of 171 Old 12-23-2010, 06:23 PM
 
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I think if there is chances you have it, perhaps get tested too?

 

I'm really sorry to hear about your sister, bless you x

 

I must admit, we haven't really received any support, perhaps that's why I am dealing with her condition how I am dealing with it?

Even now, I put it to the back of my head but I have without knowing it, made a big deal about her and Christmas!

 

She has DOUBLE the presents the others have, I feel like such a bad mother at the moment BUT I think that's my conciousness telling me to make the most of her because I don't know when her time is up, It's still not acceptable though, I shouldn't have a ''favourite'' like I clearly have! :(

 

Good luck for the gene testing :) xxx


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#164 of 171 Old 12-23-2010, 06:29 PM
 
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We didn't have a lot of support around the time my baby was diagnosed and rushed to emergency surgery.  In fact, 2 weeks before during a one night hospital stay, the doctors were convinced that she had had a reflux episode and sent in a social worker to talk to postpartum depression mama (me) after emphasizing that her weight gain was not acceptable.

 

BMo5, you have support here.  I'm thinking of you and all the other mother going through this.  It's a bumpy road, but just keep hoping and enjoying every second of that baby.  I know it's easy to put your other children on the back burner, and perhaps necessary for awhile.  Now that Rayne is better, everyone is better and all my kids got to really enjoy Christmas this year =)


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#165 of 171 Old 12-24-2010, 10:32 PM
 
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Hi heart mamas!

 

I've just read through this whole thread - great to hear from other moms who have been through something similar.

 

My daughter has Noonan Syndrome, as well as a microduplication on her 1st chromosome.

 

She has the following heart issues: ASD (repaired at 9 months through OHS), pulmonary hypertension (minor, at this point), and has in the past displayed signs of pulmonary stenosis as well as hypertrophic cardiomyopathy, though her recent echos have NOT shown these. (YAY for that - fear of the latter of those has caused me to lose a lot of sleep...).

 

We just got out of the hospital after spending 6 days there after she came down with RSV. We were on the cardiac unit, but her doc (who I really like) told me that we were only on the cardiac unit because of her history, but that her heart currently looks great. :)

 

Kate's biggest issue is feeding - she's still 100% g-tube fed. She is cognitively and developmentally only very slightly behind so I'm hoping that when we do a wean after the beginning of the year, we'll get there with feeding....

 

Happy Holidays to everyone... :)

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#166 of 171 Old 12-27-2010, 06:30 AM
 
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Jack*and*Kate - how old is your LO now?


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#167 of 171 Old 12-27-2010, 11:59 AM
 
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She is two and a half...
 

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Jack*and*Kate - how old is your LO now?



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#168 of 171 Old 01-03-2011, 07:53 PM
 
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wave.gif I just found this thread and took a quick glance through but will look more later.  I've a DD who's 20 months old with an AVSD repaired when she was 5 months old.  Heart wise, she's healthy now - cardi check ups are annual.

 

I'm curious as to how your heart kids are developmentally.  DD has been lagging in her gross motor skills - she's still not walking unassisted and will only stand on her own for about 5 seconds if she doesn't know she's doing it.  We're wait listed for physio.  It's only bothered me in the past couple of weeks because I'm pregnant and it's getting hard to carry her.

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#169 of 171 Old 01-03-2011, 08:12 PM
 
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windymama - have you had any genetic testing done? Was she failure-to-thrive?

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#170 of 171 Old 01-04-2011, 06:16 AM
 
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windymama - have you had any genetic testing done? Was she failure-to-thrive?

 

We had amnio done, as they discovered the defect at the 18 week u/s and the geneticist scared the hell out of us when we met with her (told us DD would likely be severely disabled blah, blah, blah).  We've had the PKU and other routine tests done at birth and some testing for metabolic disorders later on but everything came back normal.


She was failure-to-thrive for about the 1st year, especially before surgery.  She had a NG tube for about 6 months, her feeds were very heavily fortified and for about 2 months she was on continuous feeds with a feeding pump.  Currently she's hovering below the 3rd percentile but she's growing steady so her pedi is not entirely concerned about that (and neither are we).

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#171 of 171 Old 01-04-2011, 03:11 PM
 
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I know that when Rayne was diagnosed as failure-to-thrive, before they found her coarctation, they were concerned about her brain development. They said that usually all nutrition is reserved for the brain, but sometimes it's not enough. That said, my heart-baby is fine developmentally. After ftt and her heart surgery at 9 months old, she started walking at 13 months. She's 24 months now and completely caught up.

But I also have a son, who is not a heart baby (yet), and has had problems with his large motor development for which he had 2y of physical therapy and now is showing delays in multiple areas, including sensory processing disorder, and multiple occupational skills. He's 3.5y now. CDS has recommended occupational therapy. He was slow to grow, but always managed to stay at 5% (I think because I was determined to nurse him 100X a day if that's what it took). He was born with a dysplastic multicystic kidney and mild kidney reflux (grade 2). I think my children's ailments are related and we are having genetic testing done this month. I will be asking specifically about 22q, but there are a number of genetic disorders that cause a wide array of symptoms.

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