Moms of childrens with heart defects - Page 2

[MiracleMaddiesMom]

cristeen- here is a link for you:
http://www.congenital-heart-defects.org/

The website has a little info on the link of taking Paxil in the 1st trimester and VSD.

I hope you find the answers you are looking for I know for me, not knowing the how's and the why's, are hard to accept.

[wantingagirl2b#4]

Originally Posted by LauraLoo

Chiming in. DS was born with a Ventricular Septal Defect (VSD) and had open heart surgery when he was 5 months old. We were trying to delay surgery until he was 1 year old, but he was FTT so needed the surgery sooner. Good news is that the surgery was completely successful and other than regular (and gradually less frequent) visits with the cardiologist, ds is considered to be completely resolved.

With DD, we did a fetal echo and a 2nd level u/s, and nothing showed. She was, however, born with a heart murmur, but that resolved itself by 6 months. Whew!

Regarding vax'ing -- we decided to selectively vax ds because of the compromised immunity issue. Quite honestly, I don't know how thoroughly I thought through this because the bigger issue was to just keep ds alive and frankly, once you are deep in the medical community with these types of issues, you kind of hear what they want you to hear. I'm just thankful that all is ok today.

I had an extremely difficult time bf'ing ds -- he would fall asleep while feeding -- such difficult work eating! I finally gave up bf''ing when he went for surgery. DS wouldn't take breastmilk by bottle, but would take formula. I feel horrible about this. DS was speech delayed and had articulation issues due to oral motor issues. I think that a lot of his speech problems were because he didn't work out his mouth muscles as much as he would have if he hadn't had the heart issue. DS was also diagnosed with Sensory Processing Issues (midline crossing issues, low upperbody strength, touch and food texture sensitivities, vestibular issues.) I've always wondered if his heart issues and subsequent surgery caused this, or whether it was completely coincidental.

Subbing......

Sensory processing disorders here too with our hearh child who is soon to be 9yrs. old. He has midline crossing issues, also the low upperbody strength, touch and food texture sensitivities, and proximal?? or something like that she spoke about. This is all new to us still. I too wonder about all the vaccine stuff too. He was vaxed :-( If I only had a clue then what I know today.
Subbing..

[niki_73]

[ErikaLeigh]

my neice has Marfan's Syndrome.

Just wanted to chime in here and see if she was the only one!

[MiracleMaddiesMom]

ErikaLeigh- My friends son was just diagnosed with Marfan's a couple of months ago. My friends son is 8 and so far is taking the diagnosis pretty good. He will most likely have to have OHS within the next year to repair his Aorta. How old is your niece?

[LauraLoo]

bumping.......

[HipGal]

Hi everyone!

I'm so glad I found this thread!

We just adopted our wonderful daughter from China last month. She has Tetralogy of Fallot (you might know it as "blue baby syndrome"). She is scheduled for surgery next Friday (the 22nd). She is 16 months old.

We almost got her in early, did all the preop and everything last week, but then they moved us back again. We've been total hermits since we have been home to make sure she doesn't get sick! I think we are all getting a little nuts staying home all the time, but I feel it is worth it to not endanger her surgery date.

She is doing really well. She has a ton of energy already - I can't imagine what she will be like after the surgery (well, probably like her brother! Ha ha!). Sometimes I'm not sure if I should reign her in. She gets a little out of breath and her lips and fingers turn purple at times. It will be nice to not worry about that after the surgery!

I'm a little worried about the hospital stay after the surgery. Dd is not interested in TV at all, so hopefully I can come up with enough ways to keep her entertained and rested. I also want to keep our attachment really strong throughout everything.

Looking forward to talking more with you all! I know what an EKG and an echo is, but neither have really been done on dd because she screams whenever a doctor looks at her.

[niki_73]

Originally Posted by HipGal

Hi everyone!

I'm so glad I found this thread!

We just adopted our wonderful daughter from China last month. She has Tetralogy of Fallot (you might know it as "blue baby syndrome"). She is scheduled for surgery next Friday (the 22nd). She is 16 months old.

We almost got her in early, did all the preop and everything last week, but then they moved us back again. We've been total hermits since we have been home to make sure she doesn't get sick! I think we are all getting a little nuts staying home all the time, but I feel it is worth it to not endanger her surgery date.

She is doing really well. She has a ton of energy already - I can't imagine what she will be like after the surgery (well, probably like her brother! Ha ha!). Sometimes I'm not sure if I should reign her in. She gets a little out of breath and her lips and fingers turn purple at times. It will be nice to not worry about that after the surgery!

I'm a little worried about the hospital stay after the surgery. Dd is not interested in TV at all, so hopefully I can come up with enough ways to keep her entertained and rested. I also want to keep our attachment really strong throughout everything.

Looking forward to talking more with you all! I know what an EKG and an echo is, but neither have really been done on dd because she screams whenever a doctor looks at her.

Hi! Welcome to the tribe that everyone would rather not be a part of. We hermit too, dd was on asprin and i was petrified she would get a fever and get reyes I felt way too uncomortable with her on it and stopped giving it when her Anti-Xa got high enough with the Lovenox which was a good thing because she got a fever of a 102 last week. most children's hospitals have a child life program and they will keep you dd very entertained with appropriate activities.
Our hospital mostly does the Echos when the kids are sedated so i'm sure they will do some when she is in PICU.

hope everything goes well and recovery is fast.

[LauraLoo]

Originally Posted by HipGal

Sometimes I'm not sure if I should reign her in. She gets a little out of breath and her lips and fingers turn purple at times. It will be nice to not worry about that after the surgery!

I remember when the cardiologist (who was wonderful!) was telling me about the signs to look for with congestive heart failure......and I was freaking out. I was a first time mom, and now I'm supposed to know what's normal and what congestive heart failure looks like?? :

You know, I remember being very relieved when ds went in for surgery - scared, but relieved. I wanted it to be over - no more waiting to get things fixed.

Anyway - Welcome Hip Gal!

[ErikaLeigh]

Welcome to the Newbies!

A will be 8 next month and her aorta is doing alright at the moment.

They plan to do open heart surgery and repair her heart at 18-22.

Does he have the 'hump' on his chest?

[LauraLoo]

Originally Posted by ErikaLeigh

Does he have the 'hump' on his chest?

Are you talking about "he" as in my ds?

If you are, and I hope I'm not talking out of turn, ds has what has been termed a "zipper." It runs completely down his sternum and a little above the belly button. Very noticable when he takes his shirt off, but it did heal pretty nicely. I know that some OHS' now can be done by going through the side of the chest/rib cage so the scar isn't as obvious.

[niki_73]

my dd doesn't have the zipper, fortunatly with ablation they go in through the leg artery. If/When she gets her pacer, she will have a small insision below she left breast and then on her abdomen until she is older and the pacer can be moved to a pocket (skin kind) above her heart on the left side. My dad has a zipper from his quad bypass and he had the sternum hump for about 6-8 months and then it settled down, men have an easier time hiding it if the have chest hair

[niki_73]

It has been now two months since we flew with dd home from having her surgery. Two months has been such a huge change, her being awake more, meeting milestones, gaining weight, feeling more assured that when i kiss her goodnight it is not goodbye and when I wake up thanking god for giving me one more day with her. She is such a sweet baby and so easy going. We go for her check up next week (ECG, Echo and 24 holter) I hope we can continue with our easy going life


I think it is so hard for most people to understand this and alot of people ask how i keep going, I think that us with heart kids understand that you just do, because in the end all we want are our kids for one more day.

[HipGal]

Packing list?

Dd is going in for surgery on Friday. She will be in the hospital for about 5 days (hopefully not more!). I will be staying with her for the whole time (assuming I can get a spot the first night where the parent bed is "first come first served"). I have no idea what to bring! I assume she won't need clothes (she will be in a hospital gown, right?). Should I pack her toothbrush? What else? How about for me?

Thanks for any help! Any additional tips/advice would be much appreciated as well!

[niki_73]

Originally Posted by HipGal

Dd is going in for surgery on Friday. She will be in the hospital for about 5 days (hopefully not more!). I will be staying with her for the whole time (assuming I can get a spot the first night where the parent bed is "first come first served"). I have no idea what to bring! I assume she won't need clothes (she will be in a hospital gown, right?). Should I pack her toothbrush? What else? How about for me?

Thanks for any help! Any additional tips/advice would be much appreciated as well!

I like yoga pants and t-shirts for when i stay, flip flops work great as they slip on and off for the middle of the night. DD always wears socks as her feet get cold and then the o2 machine doesn't work well. If she stays intubated the nurses will probably brush her teeth for you, so the toothbrush will help. small bills and change are great, a drink cup for yourself for water, and tons of moisturisers as hospitals are really bad for drying out your skin. I also bring my own TP as the hospitals isn't that bum friendly I also take along a book (nothing to serious) and my knitting.

There is no point bring cloth diapers as they will weigh hers for input/output and the nurses already know the weights of sposes (which the hospital provides) If dd has a comfort blanket or toy bring that as it is nice to have something from home. Try to limit yourself to one small bag as there is also not much room. HTH We spend alot of time in the hospital.

[LauraLoo]

Hip Gal -
I packed some cotton wash cloths from home on a whim. I found that ds liked me to wet them and place them on his forehead. They also smelled like home, were soft and didn't have that hospital linen scent. Along those lines, you might want to bring a pillow and a blanket for yourself that also smells like home.

I brought a small boom box and some CDs (lullabyes and meditative music) - I find that music is healing and ds loved music. If this is too much to lug, a personal player might be good, too. Some hospitals have funny rules about plugging things into electrical outlets, so you might need batteries, too. I am really glad that I brought this because hospitals can be too noisy or too quiet and the music helped with both.

A pad of paper and pen for notes, letters, scribbling, etc.

I find that hospitals are cold even in summer, so I bring socks and a sweater/fleece. If you are sitting for long periods of time, you can freeze!

You might want to take pictures, so bring a camera. We took a bunch to show ds later when he asked why he had his surgery and scar.

The PICU we were in didn't allow for parents to sleep in the room. However, I did and the nurses knew it. I even had one nurse suggest moving the recliner chair for more privacy. She said "If it were me, I wouldn't leave the room, either." I'm not suggesting that you blatantly break the rules, but sometimes you can gently bend them.

Another thing to keep in mind. I was never asked to leave the room for any procedures or treatments (other than surgery, of course!) - even though they could have insisited that I did. Partially this is because I kept calm and was helpful to the nurses and doctors in aiding them in what they needed to do. A lot of this stuff is VERY invasive and disconcerting, but by maintaining my wits, the hospital team included me in everything.

I'll be keeping you and your dd in my thoughts. Please let us know how everything goes!

[ErikaLeigh]

Originally Posted by LauraLoo

Are you talking about "he" as in my ds?

If you are, and I hope I'm not talking out of turn, ds has what has been termed a "zipper." It runs completely down his sternum and a little above the belly button. Very noticable when he takes his shirt off, but it did heal pretty nicely. I know that some OHS' now can be done by going through the side of the chest/rib cage so the scar isn't as obvious.

Well does he have Marfan's?
Most kids/people with it have where the chest bone sticks way to far up or dips in.

[LauraLoo]

Originally Posted by ErikaLeigh

Well does he have Marfan's?
Most kids/people with it have where the chest bone sticks way to far up or dips in.

No, he doesn't. Other than the scar, there's nothing unusual.

[mama-a-llama]

Finally getting around to posting. Here's a shortish version of ds's story. Almost immediately after birth (at home) he started having some issues with nursing--he would cry when offered the breast, and it was really hard to get him to eat, especially at night. He was also very sweaty, and grunted when he exhaled. But his dr said nothing about the breathing at his 2 wk appt, so we figured it was just a variation of normal. He had an all day nursing strike at about 3 wks, but seemed to make up for it by nursing almost constantly the next day.

At 4 weeks, he had not gained any weight, and the dr said it was our fault, that "breastfeeding was killing our baby." A visit to a LC that afternoon showed that he took in less than an ounce in a nursing session, and she felt there was probably something medical underlying his nursing difficulties. So we switched to a new pediatrician who immediately noted his rapid, grunting breathing and became very concerned at his low blood oxygen saturation. Ds was rushed to the emergency room via ambulance, to be stabilized before a transport team took him to Children’s Hospital. It turned out there were two cardiac defects: a narrowing (coarctation) of the aorta, and a ventricular septal defect (VSD). The doctors chose to only repair the coarc, because it could be done through the side, without open heart surgery, and the VSD was minor enough that it might resolve on its own. He had surgery at exactly one month old, with 12 days spent in the cardiac ICU at CHOP. He was discharged, but we were in and out twice more that month, as his eating still did not improve so he was admitted again right after Christmas to get a feeding tube.

His heart did very well for a long time. Just recently, at about 18 mo, his cardiologist was not happy with the pressures in his heart as measured on echo. So she wants him to have a cath to measure directly--which is supposed to happen in the next month, before our new baby is born : but they still haven't called to schedule. If that doesn't look so good, we're looking at OHS sometime to close his VSD.

[LauraLoo]

Welcome mama-a-llama!