The "heart" thread (CHD) - Page 9

[BusyMumof5]

Originally Posted by Motivated Mama 

You guys make me tear up  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 

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.

[Motivated Mama]

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.

[BusyMumof5]

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

[Motivated Mama]

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 =)

[Jack*and*Kate]

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... :)

[Motivated Mama]

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

[Jack*and*Kate]

She is two and a half...
 

Originally Posted by Motivated Mama 

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

[windymama]

 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.

[Motivated Mama]

windymama - have you had any genetic testing done? Was she failure-to-thrive?

[windymama]

Quote:

Originally Posted by Motivated Mama 

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).

[Motivated Mama]

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.