The "heart" thread (CHD) - Page 7

[Lindsay1234]

lillismom, that must have been horrible! I know that the bypass was one of the hardest things for me too. I think a few of us have surgeries coming up the teens too.

Im SO glad your ds came out of it ok and even though we didnt stay in a RM house, i applaud them for all the good that Ive seen them do!

Hummingmom, I dont worry about my older dd but I wonder about any subsequent little ones Ill have!

Sophia is 2 months post-op and doing AMAZING. She isnt on any diuretics anymore and her blood pressure is sloooowly dropping back to normal. She has an INSANE amount of energy and is THIS close to crawling! (shes 8.5 months)

Heres a few pics of her, can you guys see them? Shes happy ALL the time and just a real joy to parent!

Hope everyone is doing well!


ETA: I think you need a facebook to see them.

[hollytheteacher]

Originally Posted by Jilian

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.

me too....

[Lindsay1234]

I miscarried 2 cycles before her. WTH?!

[hollytheteacher]

Originally Posted by Lindsay1234

I miscarried 2 cycles before her. WTH?!

Wow!I wonder if it has been studied (the prevalence of m/c happening right prior to conceiving a "heart" baby)...

I know the thought had crossed my mind before but then I also just wonder if like my first pregnancy (had we made it all the way through), if the baby would have also had a CHD ...maybe even more severe...

So it's kind of a chicken and egg question...but an interesting one to ponder.

[mama crane]

My first 2 dc have left heart defects. I had a miscarriage and then my 3rd dc who has no cardiac issues. I often wonder if the baby I lost had some sort of heart issue.


My father was heavily exsposed to Agent Orange in Vietnam a few years before I was born. There has been some research suggesting that grandchildren of those men exsposed have higher occurances of heart and kidney defects.

I have pretty much stopped wondering/worrying about what may have caused the defects. I know I did nothing to cause them (drug/alcohol/lifestyle) and I have heard of many women who do things that "should" cause issues and have healthy babies. It can get to be a toxic thing to dwell on in my experience.

[Lindsay1234]

Originally Posted by mama crane

It can get to be a toxic thing to dwell on in my experience.

Yup! Its taken me so long to realize that I cant progress or help Sophia progress if Im holding onto that guilt!

[Jilian]

Interesting about the miscarriages, I've often wondered if the baby I lost had serious heart issues too. I miscarried around 5/6 weeks and I know the heart is fully formed by 5 weeks so I wonder if it didn't form correctly? DH's dad was also in vietnam and exposed to agent orange. Interesting. His brother also had a baby with downs syndrome.

[Jilian]

Sophia is adorable! I'm glad she's doing so well.

[Lindsay1234]

Hope everyones doing well!

Sophia had a cardiac appt last week and we dont have another appt for 6 MONTHS! YESSS!!!!!!

I was curious though....Were planning a vacation and it WAS going to be in British Columbia at some secluded hot springs in June. (Im in California) but last night I FREAKED out thinking about something happening there and us not being by a hospital. The nearest hospital is 20 min away. There IS a small airport about 3 miles away. I was ok with it (weve been planning for a month) but now I cant do it.
Can you guys give me your advise/experiences with the first trip post-op? Are we EVER going to get a vacation? (one thats not near a Ped hospital with a heart team! lol)

[Jilian]

I was nervous going anywhere too. It passes with time. I brought my stethoscope and blood pressure cuff on our first trip away from home : We're normally 90 mins away from the children's hospital anyway so going away actuallymade us closer to a kids hospital. The fact that they've moved her to 6 month appointments is such a good sign, it must mean that her heart is looking good. I wouldn't worry about going away too much. If it makes you feel better research and get the names of the nearest childrens hospital and ped cardiologist just in case.

[muldey]

Hi everyone!I'm so happy to hear everyone's heart babies are doing so well!

Ds has TOF.He had his surgery over 8 years ago,October 5th,2001,at Children's in Boston.It was a full repair,but he is missing his pulmonary valve,so that might have to be replaced at some point in the future,we were given a time line of 20-50 years,which is amazing.He also has a microdeletion on his 2nd chromosome.We're not sure what that means at this time.He's also on the autism spectrum(Asperger's or high functioning autism,depending on which drs we're talking to).He also has some problems with his legs(they said his CPK levels were very elevated,I'm not sure what it means).He's afraid to exercise because it hurts,but we're working on it.He's a chubby,healthy little boy.He sees his cardiologist every 6 months or so,his geneticist and ped once a year.He's been to neurologist a couple of times for his legs,but they said there is not much they can do,except a leg biopsy which he didn't recommend at this time,since the pain isn't all the time.

He has some learning issues as well,he reads well but doesn't comprehend what he read.He can't write too well,and screams and fights when he's asked to.He's great at science and math though,his favorite things.He's in 3rd grade,in a self contained classroom.He gets frustrated easily,and will kick,throw,hit and scream.I had to fight for his IEP.They didn't want to start having him go to a regular classroom,and I did.Now he goes to 2 3rd grade rooms,besides his own class!He goes for technology and math,since he loves both he behaves well.He does have someone with him,either the social worker,his speech therapist,or his occupational therapist.I'm hoping to get him an aide and get him into a regular classroom full time,but the school is saying no way.Just another fight I have to win.

He had a Make a Wish trip to Florida whe he was 4.It was amazing.I highly recommend MAW.They sent us to Give Kids the World,which is a vacation in itself.They gave us spending money,and we also were given tickets to Sea World,Disney and Universal and a nice little farm called Green Meadows.They were very accomadating.We never had to wait in a line,we got to meet all the characters,it was just so much fun.Ds remembers everything.Give Kids the World let us borrow a video camera so we have most of it on dvd.They also treated dd just like ds.When they came out to meet us they brought her gifts as well as ds.They even let my parents stay at GKTW for free,they just had to buy their own plane tickets and park tickets.They could eat with us and do everything we did at GKTW for free.

He's just an amazing kid.I can't believe he'll be 9 in July.It went by so fast!

[Jilian]

Welcome Muldey! What an amazing story. It sounds like you have a great little guy there!

[Lindsay1234]

SO we got blood work back form the geneticist. (the microarray) Clean. All her chromosomes are normal and no micro deletions.

This means that 1. She has something that has never been discovered OR 2. All of her ailments are coincidental.

I have no clue. Her main problems are her heart, kidneys and hearing. Well the heart can be a freak thing, the kidneys could have been from the traumatic birth(hypoxia) and the hearing loss could be from the meds at birth!

This is weird, isnt it? The geneticist also said that Sophias smaller eyeball and folded ear could have just been the result of her face being smushed in the womb, she was 11lbs5oz when she was born and was SOOO swollen.

Could it really be nothing? She was seen by the develop ped the other day and is at her age developmentally.

[Jilian]

Oh my gosh, GREAT news! You must be so thrilled!! And...11 lbs 5 ozs? Wow! That is a big healthy baby! My heart guy was itty bitty at only 6 lbs 4 ozs and he was born a day after he was due.

[Prensa]

hey everybody! Just stopping in to bump the thread again and let you know we are gearing up for a bidirectional Glenn in less than two weeks! Julianne will be just five months old when they do it and I cannot wait to get this behind me, I am soooo nervous! you know what it's like to have OHS breathing down your neck! We just had a cath last week and they say she is a good candidate, so here we go!

I can't believe we even made it this far, thanks for all the encouragement when we needed it!

[Lindsay1234]

Prensa, Ive been thinking about you and the babe, wondering when the surgery was coming up.

From my experience, the Bi-Glenn was nothin. I say that, now, looking back of course. It only takes a couple hours (I think the actual surgery here took 45 min but all the prep work made it take like 4 or 5 hrs.)

Julienne is such a fighter already, you KNOW this is going to be a piece of cake for her!

Oops, babys awake, gotta go.

[Lindsay1234]

Whoops, I reread my last post and I messed up Prensa! I meant to say the SHUNT was short but the Bi-glenn was "nothin".


Our Bi-Glenn took about 9 hrs start to finish (from the second we gave her to the docs to the second we got to see her after the surgery) only because they found that she had another unseen defect (DORV) and fixed it while they were in there.

I was just bumping this thread to see how all our babies are doing! Sophia has SOOO much energy, Im exhausted at the end of the day. Shes just getting strength in her chest again (were 3 months post-op) and is still thiiiiiis close to crawling.

Hope all the other babes are doing well!


Sending positive and healing thoughts to Julianne!!!!!

[Jilian]

Good luck to Julianne on her upcoming surgery! I hope it is uneventful with a fast recovery.

We're still doing really well, just the usual weight issues for my heart guy. He's almost 3 now and at 24 lbs and it took a lot of work to get here. We were moved to yearly cardiology appointments last may so his appointment is coming up soon.

[2boyzmama]

Hi Heart mamas, I have a question for you!

Connor has 22q, which is called VeloCARDIOfacial Syndrome. When he got the diagnosis of 22q, he was sent to cardiology and had an EKG and Echo which were both normal. The Cardiologist heard a Grade 1 murmur, but wasn't concerned in the slightest.

He's 3 now.

His growth has been very slow, and he's now being referred to Endocrinology for growth hormone testing. Endo called me with the appt, and said "we always send slow growth kids to Cardiac also, so they'll be calling with their appt soon." I explained that we had already been through cardiac, but they said to go back anyway.

I understand it's prudent to go, but what are the chances that something was missed?

[Jilian]

If he's already had an echo done then they likely would have caught any major structural abnormalities. There is a small chance that he could have had a very minor abnormality that was missed but not too likely. How old was he when he had the echo?