Moms of childrens with heart defects - Page 3

[ErikaLeigh]

Laura - okay

Welcome!

[HipGal]

We're home! Thank you for your advice on what to bring. It WAS freezing there! I'm so glad I had a sweater.

Dd's surgery went well. The recovery was tough. She had a hemorrhage in her lungs the second night and they had to put her back on the breathing machine. It was really scary. We spent a week in the ICU and one night in the general room. We came home yesterday and she is doing great! She still isn't steady on her feet, but she is happy and back to her regular personality.

Wow. I really learned a lot about myself and life through the whole process. The first couple nights/days, I was a total wreck. I was crying at the drop of a hat. I would stare at her stats the whole time. She was resistent to the sedating medications, so she kept waking up crying while still intubated. At one point she was bleeding from her nose and mouth. It was terrifying for me. I really had to learn to calm myself down and realize that I wasn't in control of the situation. I just had to wait for her to get better. Time seemed to go so slowly, but slowly she did get better. I also met many families facing much tougher situations than I was. We are so lucky to come home and expect things to go fine from here on out.

[LauraLoo]

Hip Gal - Welcome home! Glad that things went well overall. I also remember staring at the stat machine. I started to be able to predict when the alarms would go off. I do think when you have a seriously ill child it really is a life altering experience. Not that I would wish this on anyone. But if you can make it through this, other minor things seem less irritating, you know? It's good to be able to focus on what's really important in life.

[Caledonia]

Hip Gal...good to hear you guys are home. They seem to heal so much quicker in the peace and familiarity of home.

I am a crier, too. I hold it together until we start the walk down to the OR or the cath lab, at that point DS is usually groggy enough not to notice or care, my own heart is wrenched when I hand my boy over to the Docs. I usually puke too We've been through 4 OHSs and (DS had 3, DD1) and 4 or 5 caths with 1 more scheduled for this summer...it doesn't get easier.
Fortunatly, it is out of my system by the time he makes it back to the PICU and the numbers watch begins: sats, heart rate, fluid output....Did the Doc mean he looks "Good" with an eh, shrug or "Good!" emphatically? Do the nurses seem more concerned or like this is routine...and on and on

But as for the trauma on DS, he seems relativley unschathed. They keep him comfortable pain-wise, and since the last surgery he is able to run and play so all in all according to his viewpoint it was an ok experience. Crappy TV, pudding and gatorade...the good life

For momma, definitley life changing...every time.

[mama-a-llama]

Ds's cath is scheduled for the 16th. He has preadmission testing on the 13th in the morning, and only then will they tell us the actual time for the cath itself. It's really bugging me b/c I need to make arrangements for my dd--what if it's going to be later in the day and they'll keep him overnight?

Also, any description of what it's like would be great. I know WHAT they're doing, but not what the actual prep/recovery will be like.

[SleeplessinAZ]

Carly,
I would plan on them keeping your DS overnight after the cath. Sometimes they release them same day, but often it's an overnight stay. So I would plan on making arrangements for someone to care for your DD.

Is this your DS first cath or surgery? How old is your DS? My DS has had 2 caths so far. His first was at 3 days old, and to be honest, I don't remember much because I was in shock from his diagnosis and recovering from birth. His second cath was at 10.5 months old and that one is more fresh in my mind. The part that sucked the most was not being able to breastfeed him for 6 hours prior to the scheduled time for both caths/surgeries, so that's why he still uses a pacifier. I would bring whatever comfort items your son likes, like paci, blankie, some videos/DVDs, books, favorite toys to distract him before and after the cath. He (his leg) will need to be kept perfectly still after the cath for several hours so that it doesn't bleed out. That is the tricky part with a toddler after they wake up from the anesthesia...keeping them still and distracted. Your DS might be very hoarse from being intubated and crying alot once he wakes up. I was able to nurse him right after he woke up. That's all I can remember right now.
naking....please feel free to ask any more specific questions.
heart hugs,
kristen

[mama-a-llama]

Yeah, I figured it was safest to assume they will keep him overnight just in case.

Ds is 20 months, but has delays so he's really more like a 12 mo old. This is his first cath. He had surgery at 1 month. I will definitely bring distractions. But I'm having a very hard time picturing my wiggly boy keeping still. The NPO thing isn't usually a huge deal, since he's tube fed anyway. Although his last echo they were running VERY late and he was getting very cranky. I'm very lucky and my DH will be able to be there too so there will be two of us to distract him.

I'm worried about this, but really freaking out if it turns out he does need more surgery. It's not emergent, but probably shouldn't wait a long time. And I don't see how I can manage having him have surgery when I have another little baby--not until 6+ mos when baby might take some solids and be able to be away from me for a little longer at a time.

[mama-a-llama]

Update:
He did really pretty well with the cath, other than IV infiltration. But the bad news is things are worse than they thought, and his cardio wants him to have the VSD closed before he turns 2. That's not even 4 months away! He also has a mitral valve abnormality that they didn't know about, but they aren't planning to fix that unless it's really easy and straightforward. They don't want to risk damaging it and him having to have an artificial valve.

So once we come up for air after having the baby, as his cardio put it, we're supposed to email her and work out when to do the surgery. She seemed confident that we can work something out so I can be there with the baby--maybe get a waiver to stay at Ronald McDonald house even though we don't live quite far enough away.

[LauraLoo]

Carly - I'm sorry to hear about this.
Your cardiologist sounds wonderful in trying to work things out best for your family in terms of scheduling the surgery.

[ErikaLeigh]

Hip girl -- I am glad to see that things went well.

How are things now?

[G&B'sMama]

Hi, I’m just joining this tribe. My DD was born with multiple VSDs and ASDs. She was diagnosed at 1 week after birth. She was born two weeks after her due date and weighed a big 9 lbs. 13.3 oz. The first week after birth she had trouble nursing, and would cry and cry until her mouth turned blue and then fall asleep briefly, only to start over again. At her one week appointment, she had lost two pounds from her birthweight. In my whole life I will never forget the look on the ped’s face as he listened to her heart that day.

The big issue at first was the VSDs. The biggest was the size of a dime and the when we looked at the shunting on the color ultrasound- almost all of the oxygenated blood was circulating back into the lungs, instead of going into her body. She also had cold, bluish hands and feet. We were told that she would probably need surgery before she was six months old and prepared ourselves for that. The cardiologist told us that if she had been born 7 or 8 lbs and lost that much weight they would have operated within weeks. However, because she was born nearly 10 lbs. and went down to just under 8, she appeared to have a bit of reserve. We had to fight tooth and nail to exclusively breastfeed, because our cardiologist really wanted us to supplement. It took six months for her to regain her birthweight, but a miracle happened. Even though she barely gained, she grew 7 inches in length during that time. Our cardiologist had never quite seen anything like it. At 4 months we were told that a number of the smaller holes had shown significant closure with her growth and that surgery could be put off. At one year, we were told that surgery for the VSD would be unlikely. By four years old, all of her VSD- even the biggest one- had completely resolved.

Unfortunately, her ASDs haven’t shown any improvement. At her last cardiology appointment, in fact, some of the ASD’s appear to be enlarging with growth. Although we can’t be sure, because it could be that the growth of the heart has shifted the angle in which we see the holes and they appear bigger. There isn’t the risk of endocarditis with ASDs, and there aren’t any limitations on activity. However, there is still the possibility of surgery if the ASDs don’t resolve after she goes through puberty. So right now we are just watching and waiting. We are also extremely grateful that she has been so healthy and grown so well. The prognosis wasn’t so good at first.

I admire the strength and courage of all of the mamas who have posted here and seen their kids through surgery and transplants. Love to you all.

[niki_73]

Welcome Erika.

Please feel free to give updates on your little ones.


My dd is doing great since her ablation she is 7 months now (3 post surgery) and is up to 15lbs. Her recent tests look great and we go back to see her electrophysist in October. We are very hopeful that she does not need a pacemaker yet. We go to see her Pedi. tomorrow to have her GERD meds evaluated, I think we will start weaning her from them soon. She slept without her Tucker wedge for the first time last night and experienced no apnea or reflux episodes.

[InstinctiveMom]

Hi! I almost feel silly posting in light of the more serious problems, but I'm not sure who else would understand.
My son just turned 4, and was diagnose with a heart murmur last week. We went to get X-rays, EKG and labs and are seeing a cardiologist on the 8th.

On the one hand, both my boys have had surgery in the past, so the rational part of my mind says 'wait until we see the cardio to find out if we need to freak out', but of course, emotion doesnt always listen to the head

My sister was 3 when she was diagnosed with a murmur, and she grew out of it and all was fine. My cousin, however, was born with a hole in her heart and required several surgeries and still has problems now, as an adult. So with the two experiences, I'm not sure which way to lean.

We'll know more when we see the cardio, and the NP at our pedi said things look fine for now, but for some reason that's not really all that reassuring.

My thoughts are with all of you here. I can't imagine what kids of things you and your babes have experienced! ((hugs))

[G&B'sMama]

Hi Instinctivemom-
You know one of the hardest things for me has always been the waiting. The one or two days I had to wait for my DD’s diagnosis was like an eternity. Since then, it has mostly been watching and waiting. At this point I am actually grateful for the waiting because for us the waiting has brought spontaneous healing and health.

My daughter was born with ASDs and VSDs- those are different types of holes in the heart. She has “grown out” of some of them, but we are still waiting out others. They, like many heart defects, are associated with a “murmur”. My dad, my son, and I have what is called an innocent “murmur”- which can be heard at certain times, but is not associated with a defect. There is a lot of variation.

Good luck with your son’s appointment. (((((hugs))))) I hope you don’t have to wait too long.

[InstinctiveMom]

Thanks, Erika! I actually haven't done much research (read: any) at this point, which is sorta uncharicteristic of me, but this time, it's something I'm almost afraid to start looking up stuff on for some reason.

[LauraLoo]

Hi Instinctive Mom -
When my ds was diagnosed at birth with a VSD, the cardiologist suggested that I stay away from any internet sources of information out there. He said that it would only scare me, not inform me. That was 7 years ago. He encouraged me that if I had any question at all, to contact his office. Weirdly enough, I took his advice. I tend to be anxiety ridden anyway, so I didn't need to see worst case scenarios, ya know? In my case, selective ignorance worked for me and allowed me to bond with my baby instead of spending hours on the web. Maybe there's better resources online now. Ask your cardiologist if there's anything he/she would recommend.

The waiting is definitely the hardest part. I remember being relieved when my son finally went in for surgery. Scared, but relieved because it meant that we were closer to the end of the whole ordeal.

[ErikaLeigh]

Heather -- when my neice was diagnosed with a heart murmur it turned out to be Marfan's Syndrome.

[niki_73]

Kelsey- How did antonio's appt go?

[mama-a-llama]

Talk to me about open heart surgery, mamas. Ds is scheduled for early next month. His last surgery wasn't open heart, and he was horribly sick beforehand--the heart failure lasted 6 weeks after surgery. So I don't know what to expect with planned surgery on a pretty healthy kid.

[niki_73]

Originally Posted by mama-a-llama

Talk to me about open heart surgery, mamas. Ds is scheduled for early next month. His last surgery wasn't open heart, and he was horribly sick beforehand--the heart failure lasted 6 weeks after surgery. So I don't know what to expect with planned surgery on a pretty healthy kid.

I don't know anything about open heart as dd's was done through her artery in her leg.

Hopefully another mama can help you