or Connect
Mothering › Mothering Forums › Mom › Parenting › Special Needs Parenting › The "heart" thread (CHD)
New Posts  All Forums:Forum Nav:

The "heart" thread (CHD) - Page 2

post #21 of 171
Congratulations Prensa!

You are doing a great job!!!!

Ask anything, Im sure between the heart ladies, we can answer almost anything!
post #22 of 171
Thread Starter 
Quote:
Originally Posted by Lindsay1234 View Post
Scheduled the full repair for Sophia! It will happen on Nov 24th, she will be 6 and a half months old. They are REALLY confident about the procedure because she is in great health right now!

Were VERY excited. The worst part for me is signing the consent. This time she will go on bypass so I literally have to give my permission to stop her heart. Worst.part.ever.


I so remember that feeling. I also remember when the nurse came to me and told me, "at this moment your son is on bypass". At the hospital where he had his surgery, they assigned us a nurse who would update us step-by-step where they were at and how it was going. It was absolutely chilling to hear her tell me that in that moment my son's heart was NOT beating. Thinking back, I still get goosebumps! But now he's a happy, healthy, running all around 26month old! So it was obviously all worth it! But still, very terrifying and I wish no mom's had to go through it!!!
post #23 of 171
Thread Starter 
Quote:
Originally Posted by Prensa View Post
hi again, thanks for all the warm welcomes...I am back to say that my baby is here, she's a tiny lil thing born at almost 38 weeks and 5lbs 5oz. she's about 29 hours old and hanging in there. Her defect, Ebstein's anomaly, is a tricuspid valve defect where the leaflets don't form correctly and cause leakage back into the right atrium. This causes the atrium to become enlarged and also because the pressure is not great due to the leak, there is no forward flow through the pulmonary valve. So she can't oxygenate very well on her own. Right now we are waiting for the ductus to close to see how that will affect the pressure and we'll be able to make decisions based on that.

I am just thrilled that she's here, they told me at about 30 weeks that they didn't expect her to even make it to birth and I spent every pregnant day since then so so worried and always wondering how she was doing. It's a blessing just to have made it this far and get to meet her.

we are lucky to live in New England and have great resources at our local hospital. So far they have not mentioned going to Boston but it's great to know that we are close if they do decide to send us there.

for now I am learning my way around the NICU and everything, pumping to build up a supply and get my milk to come in even though she's not able to eat anything just yet.

I'll be back with updates and to ask questions! I'm proud to be joining this community of heart moms!
oh my goodness! Congrats on your sweet baby! I live in Vermont...where in New England are you? PLEASE let me know if there is anything I can do to help!! Do you need anything? Honestly if anything at all please let me know!!
post #24 of 171
Quote:
Originally Posted by hollytheteacher View Post
I so remember that feeling. I also remember when the nurse came to me and told me, "at this moment your son is on bypass". At the hospital where he had his surgery, they assigned us a nurse who would update us step-by-step where they were at and how it was going. It was absolutely chilling to hear her tell me that in that moment my son's heart was NOT beating. Thinking back, I still get goosebumps! But now he's a happy, healthy, running all around 26month old! So it was obviously all worth it! But still, very terrifying and I wish no mom's had to go through it!!!
We had the same thing, the nurse called us during the surgery to update us and I remember her telling me that the trickiest part was getting on and off heart and lung machine. I held my breath knowing he was coming off and prayed that his little heart would beat on its own. I almost wish they didn't tell me because that was a scary half hour! I later learned that they have pacemakers in case the baby's heart doesn't start up well or beat fast enough. They had to pace DS from 120 to 140 for an hour or so. I think it is somewhat standard to have a bypass baby come out with pacemaker lines directly into the heart - did your son have that too? They didn't remove DS's until about 5 days post op

Our little ones are close in age, my guy is 28 mos.
post #25 of 171
Thread Starter 
Yes! I do remember those wires! I was very excited when they came out!!
post #26 of 171
So Sophia is about to grow out of her bucket style car seat and Im wondering if there is a style favored by heart mamas? Im not sure she will fit in this seat, length wise, all the way to 6 weeks post op. (that would be 10 weeks from now, she might be able to squeeeeze into it still)
It is SO hard to "scoop" her out of this one too! She was in the NICU the last surgery so Im lost thinking of having a post-op baby at home!

Also, did anyone get handicap placards? Should I ask for a temp one? She has a gtube too so its especially hard getting the baby/carseat, gtube backpack out of those teeny, tiny parking spots.
post #27 of 171
Quote:
Originally Posted by hollytheteacher View Post
oh my goodness! Congrats on your sweet baby! I live in Vermont...where in New England are you? PLEASE let me know if there is anything I can do to help!! Do you need anything? Honestly if anything at all please let me know!!
thanks Holly! we're in Maine, and today she is six days old and having open heart surgery RIGHT NOW. so I'm online trying to distract myself from the waiting..

(they are doing a BT shunt, closing her ductus, enlarging the hole in her atrial septum, reducing the size of her huge right atrium and patching over the leaky tricuspid valve...whew!)

I don't need anything right away, but I'm sure I'll be back with questions!
post #28 of 171
Quote:
Originally Posted by Prensa View Post
thanks Holly! we're in Maine, and today she is six days old and having open heart surgery RIGHT NOW. so I'm online trying to distract myself from the waiting..

(they are doing a BT shunt, closing her ductus, enlarging the hole in her atrial septum, reducing the size of her huge right atrium and patching over the leaky tricuspid valve...whew!)

I don't need anything right away, but I'm sure I'll be back with questions!
I'll keep you and your little one in my thoughts all day. Update us when you can. I hope the surgery goes well and she recovers quickly and you are snuggling her again soon. Feel free to ask any questions, lots of us have been there. Lots of hugs to you and your little one. :

Car seats: we went to a Britax Marathon when DS2 outgrew his bucket. I'm not sure it is better for heart babies but we liked it because it is a really safe seat and lasts pretty much up until he's ready for a booster.
post #29 of 171
Kelsey here!

My 4yo ds had OHS at 18mo to repair a moderate VSD and CoArc. He is now being monitored for a Bicuspid Aortic Vavle and newly discovered Subaortic Stenosis.
We too created a scrapbook of pictures. We gave a copy to the Heart Ctr where we went so they could show other parents going through similar surgeries with a child his age (most that need those repairs are newborns/young babies) Our copy for the Dr's was a bit more graphic than the one we keep at home but thats so parents can see *real* pictures of recovery. Ds loves to look at his pics, he's proud of his *zipper scar* as he words it.
I haven't ever seen any published books so I'd love to hear some suggestions

Nice to meet you all
post #30 of 171
My DS who will be 10 in January has Hypoplastic Left Heart Syndrome. He had his first repair at 3 days old, 2nd repair at 6 months and 3rd at 6 years. He also has a stent in his aorta for a pseudo coARC and what his cardiologist refers to as "wanna be Protein Losing Entoropathy" meaning his albumin (protein levels) are boderline low. All told he is doing very well. He is a gifted artist and is just a funny guy.
We have always been very honest about his heart anomaly. He knows how serious his condition is but it really doesnt seem to bother him much. He does get grumpy about the way he needs to eat to keep the protein levels in the right range (low fat/high protein) but I like to remind him that lots of people have dietary restrictions and really, his is not that bad as there is wiggle room from day to day.
We have been told that this is the most serious heart anomaly and as such get a lot of weird attention from nurses and doctors which I dislike but my son loves I am happy that he doesnt realize that we are a novelty because this is a fairly rare anomaly and he has had fairly rare longevitly.
Despite all of this, our day to day is very normal. One of his friend's mother is a nurse and I had to tell her about his heart...meaning she couldn't tell because he looks and acts like any other 9 year old boy

My DD who will be 8 in November was 6.5 weeks early and had a CoARc. Her heart was repaired at about 1 week . She is doing very well and has follow up cardiac consults about once a year. Her scar is beneath her shoulder blade..I dont think most people even notice it.
post #31 of 171
Welcome mama crane, I'm glad to hear that your two are doing pretty well. I've never heard of a scar being under a shoulderblade, how do they do that? Was it a full OHS?
post #32 of 171
The scar under the left shoulder blade is an incision referred to as a thoractomy *sp
Its easier for the surgeon to access the CoArc from a side lying posistion/side entry.
post #33 of 171
Welcome ladies!

mamacrane/faithful one - a surgery on the side? Scar below the shoulder blade?! That actually sounds COOL!
post #34 of 171
Yeah -- different entry points are way cool. When ds had his surgery 8 years ago, the common point of entry was to go through the front - sternum/rib cage, cutting the bones to access the heart. His scar is about 2/3 of his entire torso. Not too long after his surgery - maybe a year or so, I heard about side entry as being a less invasive surgical option. The under the shoulder blade is a new one for me.
post #35 of 171
Unique scars they are
My ds has both, sternum incision for his OHS to repair the VSD and the Thoractomy for his CoArc. His sternum incision is about 4" with a little Q-tip shape at the top (I think they accidentallly tucked his skin when stitching and it created a small buldge) and the side one is almost the entire length of his lower shoulder blade. He also has two little scars at the base of the incision where his drainage tubes were.

ETA: I also read a story about a little girl who got her incision through her back, this way as an adult female she wouldn't have a scar between her breasts.
post #36 of 171
Quote:
Originally Posted by LauraLoo View Post
Yeah -- different entry points are way cool. When ds had his surgery 8 years ago, the common point of entry was to go through the front - sternum/rib cage, cutting the bones to access the heart. His scar is about 2/3 of his entire torso.
My DS's scar is the same but they only did internal stitching and sealed the outside with glue so his scar is very neat and just a fine line. His chest drain tube scar is more noticeable. He thinks it is a second belly button, and it does look like an outie belly button.
post #37 of 171
hey there

stopping by with an update, she came out of surgery on ECMO, stayed on it for three days and they successfully got her off this morning, she's in recovery now, her chest is still open and they are trying to wean the oxygen and nitric and all the drugs. it's been a really rough couple of days, but I'm just pulling hard for my sweetie and hope that we can look back on this the way you guys are reflecting and swap scar stories some day.
post #38 of 171
Prensa - youre SO close. Almost there! Keep up the positive attitude, recovery (for me) was the worst part, emotionally, but I got through it and so will you. I hope she gets closed up and home soon!
post #39 of 171
Prensa
Recovery IS the hardest part...
post #40 of 171
Hi Prensa

Sending some prayers your way. My DD had surgery as a tiny newborn and had her chest left open for 6 days, so I know how inexpressibly difficult that stage is. It was like we were all in stasis. Things started moving much more quickly once her chest was closed; first they started feeding her, then they moved her to the step-down ICU and started taking some of the lines out, then I could hold her, then we got to move to the regular floor. It was really amazing how fast it all happened. Those nurses are so efficient, and they can keep tabs on so many things at once, I'm forever impressed.

Not sure if this is useful to you, but once I was somewhat adjusted to the hospital routine, I found it helpful to bring small projects to keep my hands and mind busy during the "watchful waiting time." There was a puzzle book for when I was pumping, and a small simple knitting project that I worked on at her bedside in the ICU. Another thing... I felt kind of guilty about going away to sleep at night when DD was at the most critical stage, but the nurses said that was the best possible thing I could do. They said "you'll need the energy for later, when she wakes up and you can hold and take care of her." Which turned out to be very true. By the time she came home, I was so sleep deprived that I kept falling asleep with my contacts in, and and ended up with alarming (though thankfully temporary) eye inflammation and blurred vision. I even had to walk around the hospital wearing an eye patch, which was appropriate, since it was Halloween.

Now, two Halloweens later, my little sweetheart is doing great, and is very excited to be dressing up as a smiling skeleton. But, as I remember thinking back then, that first week in the ICU was like a real nightmare come to life. I'm sorry you're having to go through it too, and hope your precious baby gets on the fast track to recovery soon.

For now, just hang in there -- we're all rooting for you guys!
New Posts  All Forums:Forum Nav:
  Return Home
  Back to Forum: Special Needs Parenting
Mothering › Mothering Forums › Mom › Parenting › Special Needs Parenting › The "heart" thread (CHD)