[hollytheteacher]

hey everyone!

I hope all is well. Today Nolan had a heart appointment. I'm just going to cut and paste a copy of the email I sent out to family members so you can read about how it went:

Just wanted to let you all know that yesterday was Nolan's "heart-versary" (a year since his open heart surgery) and also that today he had a pediatric cardiologist appointment.

Everything is looking GREAT

He now has "normal" blood circulation and we won't have to worry about him turning blue at any point (phew!). His output to the left lungs is still less than a "normal" child because of pulmonary stenosis (but his is pretty mild compared to other tetralogy of fallot patients). AND, most tof patients require another surgery down the road to replace the pulmonary valve (or dilate it), but the dr. is still pretty confident that Nolan will NOT have to have another surgery WAHOOO!

Nolan did really really well at the appointment. He kept really still while the nurse checked his blood pressure, O2 levels, and put all the stickers on him for his EKG.

His ekg was abnormal for a regular heart, but perfect for a post-repair heart
He still has an audible murmur (probably always will)
He was very impressed with Nolan's growth/speech/physical abilities and "charming" personality

I think that's everything. Yesterday we made "heart" cookies to celebrate Nolan's special day. I'm also hoping to give blood sometime this week as another way of remembering his day and giving back.

 

[hummingmom]

That's great news!

My DD with TOF is the same age as your little guy. She had her full repair done last fall, when she was a tiny newborn (born @ 3 lb. due to IUGR, had the surgery @ a whopping 5 lb.). Unfortunately, she had to have a second operation in the spring, because her pulmonary stenosis was getting worse. They put in a transannular patch, and she's doing great now. We just hope that she can handle the pulmonary regurgitation for a long time, and that there will be non-surgical options available to replace the valve if/when that becomes an issue.

Like your DS, our DD is exceptionally sweet, sociable, verbal, and charming (and she's our third child, so I have some basis for comparison). I really think there's something to the stereotype of "heart kids."

On another note, we recently found out that we're expecting #4 in the middle of next year.

I'd love to talk to anyone who has had another child, or is pregnant again, after having a baby with CHD. I've found that I'm kind of anxious about things this time around, which isn't typical for me at all. I figure this might be a mild form of PTSD?

Anyway, hope you mamas and your families are having a happy and cozy holiday season!

 

[rsummer]

I am new here... My little guy was born Nov 17th and is also a Tet baby with pulmonary artresia and AV canal. He spent his first two weeks in the NICU and had surgery the 21st to place a shunt. We've been home for a week and I was a very laid back pregnant lady (we didn't know) and am kind of waiting for all the adrenaline to wear off. We have another surgery coming up this summer, and more in the future. He's beautiful though, a total blessing.

I can totally imagine feeling apprehensive with your next pregnancy. We are getting our genetic work up first, but its all still really scarey.

BTW does anyone know anything about, anyone with 8P deletions???

 

[MotherWhimsey]

Linden doesn's have a structural defect, but he has a cardiac conduction defect. He has what is at times a dangerous arrhythmia (it comes and goes) that has been getting worse. His movement is supposed to be limited to 5 minutes out of his chair (ha! he's two, I can't do that without duct tape!) because using energy makes it worse. Sometimes it just randomly stops over and over for a few seconds.

We go to our NeuroMetabolic specialist tomorrow and she should give us some direction on the whole heart thing. Our cardio seems to be wavering between doing a pacemaker and just keeping up with the testing and monitoring. Hopefully our specialist will be able to decide one way or the other. But it does really scare me sometimes. His heart monitor will just go blank sometimes because it totally just stops. I think every time I see that I loose a few years off my life.

But over all in the last 3 months it has progressed a lot. His EKG is abnormal, but his Echo looks good, so it's nothing structural. The good thing about that is that the pacemaker (if that's what we do) will "fix" it completely.

 

[heartmama]

I'm here too. Ds was born with HRHS, pulmonary atresia, ebsteins anomaly, ASD, and mild pulmonary stenosis.

He is 12 and doing very well (open heart surgery 3x, finished with a one and a half vent. repair).

 

[mama crane]

Hi!
I have 2 heart kids. DS is 8 (almost 9) and has Hypoplastic Left Heart Syndrome. He has undergone all 3 reconstructive surgeries and many cardiac caths (6 I think?) the last procedure was a cath during which the fenestration from his last surgery was closed and a stent was put in his aorta due to scarring from the Norwood Surgery. Right now we are dealing with protein losing entoropathy which is a complication from the last surgery.
DD who is 7 has Shones Complex, she had/s a coartced Aorta and a mitral valve issue. She was also 6 weeks early. From what I have read, Shones is also a collection of left heart defects and we feel lucky she did not have HLHS as well. I do wonder what her future holds as coarcts can re-coarc as the repair ages.
I have 1 more DD who has no cardiac issues. She is 2.

My niece (brother's daughter) is 14 and is having chest pain/pvc's but bro and SIL do not feel it necessary to see anyone other than the PA they use as a health care provider.

So no real diagnosis at this point. Ironically, the same echo tech who completley missed DS's lack of a heart chamber was the same tech who "could find nothing abnormal" on my neice...

I am thinking there is most likely a genetic component in all of this...

 

[pixiekisses]

Hey.
Our darling has heartproblems w/o a diagnose yet. It's nothing structural, that's all we know.
But she's had cardiac arrest many times, w/o anyone having any idea why.
She also has sudden arrhythmias. And her pulse drops way low, to almost not being there, for no reason, or races like crazy for no reason.
She has alot of other issues too. Sometimes her pulse problems triggers seizures. And sometimes there can seem to be a connection between her stopping breathing (she often needs help getting started again) all of the sudden (again for no reason), and her pulse problems. But we don't know for sure, bc other times she stoppes breathing and her pulse is fine.
Our doctors (/specialists) are talking to other doctors/specialists in other countries aswell, bc this is very rare, there is no kid like her anywhere. (She has alot of other complex diagnoses and things also.)

I hope all of you have a good month.

 

[Jilian]

I'm here too. DS2 has/had TAPVR type 3 that was repaired in 6/07 and he's been well ever since. We have a very uneventful cardi appt a few weeks ago. They haven't had a good echo in a long time so they've scheduled a sedated echo for May then we'll move to yearly appointments if all is well. I feel so fortunate that his one scary repair seems to be all he needed.

and, I'm scared to even say this...but I'm newly pregnant. Just knowing that my new baby's heart is forming right this very second loads me with anxiety. But H and I did a lot of soul-searching before deciding to try for another and we feel ok with whatever type of child comes our way. Genetic counselling told us that we only have a 3% chance of having another CHD baby and that makes me feel a teeny tiny bit better. But we will certainly go ahead with the 22 week fetal echo along with a later in pregnancy u/s to keep an eye on things.

Pixie, how scary. I hope you get answers very soon

 

[pixiekisses]

Quote:

Originally Posted by Jilian Pixie, how scary. I hope you get answers very soon

Oh, thanks, so sweet of you.
It is indeed very scary, I'm alert and on tiptoe 24/7.

I can understand you worrying about your new baby, I felt the same way when we had our youngest (younger than our SN-darling).
Hope all goes very well for you!

 

[hollytheteacher]

I'm here too. DS2 has/had TAPVR type 3 that was repaired in 6/07 and he's been well ever since. We have a very uneventful cardi appt a few weeks ago. They haven't had a good echo in a long time so they've scheduled a sedated echo for May then we'll move to yearly appointments if all is well. I feel so fortunate that his one scary repair seems to be all he needed.

and, I'm scared to even say this...but I'm newly pregnant. Just knowing that my new baby's heart is forming right this very second loads me with anxiety. But H and I did a lot of soul-searching before deciding to try for another and we feel ok with whatever type of child comes our way. Genetic counselling told us that we only have a 3% chance of having another CHD baby and that makes me feel a teeny tiny bit better. But we will certainly go ahead with the 22 week fetal echo along with a later in pregnancy u/s to keep an eye on things.

Good luck and let me know how it goes! I too worry about having another baby with CHD. We are not planning on trying to TTC for another 1.5 years, but it is always a thought i have in the back of my mind. CONGRATS on the pregnancy btw

 

[shoes]

DD2 has HLHS and WPWS (and some funky GI stuff...) and has had 2 of the 3 required heart repairs. I didn't realize there were other hypoplastic (right or left) heart kids on here. I've tried searching for some before on here! It's really nice to "see" older Hypoplastic kids! They seem to always be hiding...

Faris is doing OKAY right now except that she's been having a lot of very blue lips lately and that's not normal for her. I think the cold weather is usually the main cause but it's still worrying me a bit. I've always heard this is to be expected with HLHS but haven't seen it with her until recently.

We have a cardio appt in 3 weeks so we'll see how they think she's doing then.
My DD1 has been having some poor coloring issues the last few months too. She has spells where she gets sheet white. I'm really worried that she might have some underlying cardio issues too since they seem to run in familys.

 

[JessicaS]

DS has pulmonary stenosis of the valve and artery.

At our last cardiology appt the Dr said that his artery didn't get any worse and he may not need surgery for the artery.

:

We have an appt again in Jan.

We are seeing EI for possible hypontonia

nak

 

[niki_73]

I'm here too. DD has been really struggling with pneumonia lately and it has been a little hard on her heart and she is a wee tachy but still below 200 (she runs at about 170bpm). She had a hard time with the heat in the summer so I figured the winter would be easier for her but not with the pneumonia she has had for close to 5 weeks. She will go back to her cardio in April for her 2 year heart-versary but I have no real worries.

 

[DopeyDame]

Hi all,
I'm just a lurker here, but I read this thread and just had to respond... I'm a 33 year old with ToF, and reading all of this from the perspective of moms of a ToF kid is so emotional! Trust me when I tell you that it is FAR worse for you guys than it is for your little ones. I had my surgery when I was 5 (at the time, they waited a while before doing the repair - I was a whopping 25 pounds at 5 years old! The pictures of me from right before my surgery are really quite dramatic - I was so little and so blue) Anyway, I still go to the cardiologist (one who specialized in adults with congenital heart defects) once a year, and so far I've always gotten the same report - "Everything looks great - see you next year!" So far, there's no indication that I'll need to have my valve replaced, although it's certainly a possibility down the road.

For all of you pregnant moms - know that my mom had two more kids after me. They are both perfectly healthy, awesome young adults now with no heart problems. I had a bunch of genetic testing done when my husband and I started trying to have kids, and they didn't find any genetic cause, so my geneticist, cardiologist, and ob/gyn all gave me the thumbs up to try and have kids. Unfortunately, we have unexplained infertility, so that didn't end up being an issue, but it certainly wasn't because of my heart.

Anyway, I just wanted to offer some support and a "BTDT" perspective from the side of your kids. Try to relax a little! (I know - easier said than done)

 

[deezee02]

Another HLHS'er here...DS is 2 years and 2 months old and doing great. He had a hard time with him norwood (we almost lost him, ecmo and had to go back in for a 2nd open heart to reconstruct at 2 weeks old) but flew through his Glenn (discharged 3days post op)

We know the Fontan is coming close, as he is a garbage disposal and eating everything in site...I believe he is around 26 lbs already!

I am also newly pregnant, and that fear is in me also about a repeat. But, the way we look at it is that we cannot let this control our lives..if it happens, atleast we know what we are getting into. Sometimes we laugh and think a healthy baby would be harder for us as that is the unknown now!

Jilian, how far along are you? I am 8.5 weeks now.

 

[hollytheteacher]

GIANT HUGS TO rsummer.

If you haven't heard/read, over in the loss forum.. rsummer has lost her beautiful five week old heart baby on Christmas day .

:

If you are reading this rsummer please now i'm thinking of you. I'm so so so sorry. My heart is just breaking and i'm sure it's hits us heart mamas all close to home.

Here is the link to her story:
http://mothering.com/discussions/sho...=#post12870864

 

[niki_73]

OMGosh I'm so sorry Rsummer for your loss.