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Discussion Starter · #1 ·
We just found out last week that our precious newborn (now 15 days) has a heart defect. I am just going to cut and paste my post from LWAB so I don't have to retype the whole thing. Computer time is limited as you all know. I would just like to chat with other moms who have btdt.<br><br>
I took Becca to the ped last Tuesday for her first check up. She was 4 days old. The nurse practioner that we saw said she had a heart murmur and she wanted the Dr to listen. He came in and said that he wanted her to see a cardiologist because murmurs are not normal/expected with a newborn. He gave me some different scenarios of what it could be. I was not terribly concerned as Sarah had a murmur as well and had to see the cardio. Hers was benign, a small hole that closed on it's own very quickly. By 6 months it was gone. They did say Becca's was fairly loud whereas with Sarah they had to almost strain to hear it.<br><br>
We went to see the cardiologist this past Wednesday. He is a wonderful man. Very pro bf and AP. He was thrilled when I offered to nurse Becca during the exam because he could hear things better without her making noises. They did the EKG first. It is very quick and the worst part was taking the leeds off of her. Then the Dr came in and examined her. He said that he thought she may have a hole in her heart as well as the narrowing of one of the valves and he wanted to do an echocardiogram(ultrasound) to get a better view. That was not too fun because Becca does not like to be put down and did not like having the probe touching her. She started to cry so the US tech stopped and told me to nurse her and she would be back in 5 minutes. By then she was sleeping in my arms so we decided it would be best if I just sat on the table and held her and nursed her while she finished.<br><br>
The Dr came back to the room a few minutes later and said that he was 50% right. She did not have a hole but does have the narrow valve. He then went and got a book called, "Your Child's Congenital Heart Defect." Not the type of thing any parent wants to see. Her defect is called Pulmonary Stenosis. It means that the pulmonary valve is much narrower than normal causing the pressure in the heart to be too high. They measure that pressure to see how severe it is. >25 is mild and no treatment is necessary. <50 is severe and angioplasty is usually done. between the two is considered moderate and can go either way. Becca's is 35-39. The Dr said that he wants to moniter it right now and see her again in 6 weeks.<br><br>
We went back to the ped on Thursday for her 2 week check. The same NP saw her and commented that the murmur was quite a bit louder and if I had seen the cardio last week she would have us go back. I called the cardio yesterday and told him what she said and that I was not comfortable waiting 6 weeks as it seemed to be getting worse. He agreed and now wants to see her in 2-3 weeks to redo all the tests and see what change has been made. He is very sensitive though and said if I feel that she needs to be seen sooner I can just call.<br><br>
As for her defect. It is not something that will go away. She will have this her entire life. It should not restrict her in any way though. Angioplasty is very effective at helping open the valve. That is where they insert a catheter through the artery in the thigh and feed it up through to the heart. They then place a balloon in the valve and inflate it to stretch the valve and cause it to open up. I asked how often it would need to be repeated. He said that if it is done on a 15 year old, probably not for 10 years or so but with a 5 month old it may be in 2 years. IMO it is a better alternative than open heart surgery and it can be corrected. She will need to take antibiotics before going to the dentist or gyno as she gets older but that is such a small thing.<br><br>
I may be here a lot though as she needs to be held almost constantly. She is usually not too content to have others hold her either, just mom. I think she is probably held close to 23 hours a day. My non-medical opinion is that she needs it to regulate her heart and/or breathing. I sleep in the recliner at night because it is easier to keep her on my chest that way. Because of the defect, she is unable to nurse for very long before she gets tired. Therefor, we nurse VERY frequently but only for 3-5 minutes at a time. I probably won't be posting a ton though as I still have a hard time nak.
 

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I know exactly what you are going through.<br><br>
Our DD was born with an AV canal - that is an opening between the left and right sides of the heart.<br><br>
Some how Veronica was able nurse pretty well. She has always had a good latch but she to would tire. Hopefully you will see an improvement as your DD gets older. I was able only nurse DD until she had her open heart surgery. She wasn't growing but she stayed over her birth weight.<br><br>
There is such a huge difference now that she has been repaired. Feel free to PM me if you want to talk or ask any questions. The first 3 months of DD life were just awful for me. But we are all doing much better now.
 

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My son has aortic stenosis with a bicuspid valve. his pressure gradient is about 25, and has been since birth and he is now 13.<br><br>
They said the same thing about angioplasty. so far, he is doing great, plays sports, you name it and has the stamina of a NFL defensive back. That said, its still always in the back of my mind.<br><br>
the heart is a scary thing. he had no difficulty nursing and slept like a champ. keep a close eye, and try not to stress!!
 

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Discussion Starter · #4 ·
Thank you both so much for your replies. I often feel very alone in this.<br><br>
Christi, Becca is the same way with nursing. Great latch but she gets tired quickly. I am also still nursing my 19month old and 3.5 year old. The oldest only nurse once or twice a day though and is good when I limit her but Sarah wants to nurse whenever the baby is and does not like it when I tell her that time is up. It is very draining on me.<br><br>
Sweetbaby, you have given me great hope. i wondered about the sports thing but forgot to ask last week. We are a very athletic family and it makes me feel good to know that she will be able to participate.<br><br>
I told my dh last night that I just feel mentally and physically drained. I did not feel this way at all after the last baby and I am sure that a lot of it is due to her high needs. I do not have a swing and never used one before but sometimes I would like to try it to see if she would be content there. I don't like to put her in something like that though. Just my own AP snobbiness I guess.<img alt="" class="inlineimg" src="/img/vbsmilies/smilies/rolleyes.gif" style="border:0px solid;" title="rolleyes">: However, I don't know how long I can continue to hold her ALL day and not lose my sanity. I feel like I am on the verge of tears all the time now. Thanks again for your support. It helps to know that there are others out there going through this as well.
 

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Hi,I'm kind of late finding this thread,but I thought you'd like to know about my son.He has Tetralogy of Fallot,which is basically 4 heart defects in one.Here's the link,since that makes it much easier to explain.<br><a href="http://www.heartpoint.com/congtetralogy.html" target="_blank">http://www.heartpoint.com/congtetralogy.html</a><br><br>
He had open heart surgery at 2.5 months,and his pulmanary valve was removed.His surgeon did not replace it,as that would have garaunteed surgeries every 3-4 years as he outgrew the valve.We were told that in anywhere from 20-50 years,he made need another surgery to replace the valve,and there is even the possibility that he will never need another surgery.His hole was closed with a dacron patch,as well as muscle from around his heart,so that it will grow with him.He was in Boston Children's Hospital for 5 days after the surgey,and has had no complications. He is now 2,and his health is excellent.He is a VERY high needs baby.He does have some development issues,he's behind in most things,and has had physical therapy(he walked on Xmas day,at 17 months),and now receives occuaptional therapy(he has a high tolerance for pain,as well as sensory and frustration issues),and will receive speech therapy very soon.He's had the eval,the speech therapist is just trying to find a time,he also works for the local schools.Gabe is a wonderful little boy.He amazes me everyday,he's very smart,he loves Thomas the Tank Engine,he can't say the names(calls them all Choo-choo(more like shoo-shoo,so cute) or train) but if you ask where a certain engine is,he will point it out.He can figure out any toy put in front of him,does puzzles,and can point out each letter of the alphabet when asked.He's starting to become very affectionate,he'll run up to me yelling Mommy,and through his little arms around me in a big hug,while he says "awww,Mommy".I can even get a drooly kiss every now and then,lol.I have to sneak in cuddling,since he is very independent and doesn't like to be held,by sleeping with him or reading Thomas the Tank books.His biggest issue is screaming.Whenever he's frustrated or tired,he just screams,and it is very difficult to calm him.This is when I wish he was nursing.That's a long story I am still very upset about.I am the only one who can get him to stop,and it takes a quiet room,no distractions,and sometimes his bottle(it's his comfort object,another reason why I wish he was nursing).I have to sing and rock him.It's very hard to deal with,and often I cry along with him,but at least I know his heart is working wonderfully,since he never turns blue or has trouble breathing.I just wish he could say what is wrong.Usually I can figure out what sets him off,be it hunger,being tired,or even just normal sibling rivalry,but calming him is still very difficult.I think it's partly due to the h3ll we went through after his birth(the long story of why he doesn't nurse,it isn't because of his health,as his only symptom ever was his murmur,he was "pink tet"),as well as the pain of his surgery.He is getting better,the more he talks,the easier it is for him to tell us what he needs,which helps prevent the screaming.Regardless,he is a beautiful little boy,and we wouldn't trade him for anything.He's truly amazing.He's so happy today,he's singing the Thomas song and dancing,lol.I'm sure your little one will do fine,I'm praying she does not need any procedures done,but if she does,thankfully it is not open heart.I can't stand to hear another baby going through that,nor can I bear to think of any parent having to watch that happen. It is absolutley terrifying.I am scared for december,since he is having his first echo after coming home from the hospital.I'm sure he's fine,but it's still scary.Time to go change Gabe,his siter is complaining he stinks,lol.PM me anytime,I'd love to talk with another Mom with a heart baby.<br><br>
Lisa<br>
SAHM to Kasia,6/19/98,and Gabrion7/13/01
 

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Hi,<br><br>
I found this link to a diagram and explaination of pulmonary stenosis<br><br><a href="http://www.thic.com/pulmonary.htm" target="_blank">http://www.thic.com/pulmonary.htm</a><br><br>
It sounds very treatable, even in severe form. So that is good news. The actual news that something is wrong with her heart is awful, and if she does need angioplasty, it is very difficult to go through any kind of cardiac procedure without having a lot of fears surface.<br><br>
My ds has had three open heart surgeries and 5 heart catheterizations. He has multiple heart defects. One that would be relevant here, is that he was born with *no* pulmonary valve, and is doing well with a donated one. So that should give you some reassurance that even with *no* valve, they could help your dd.<br><br>
If you are going to have problems with a valve in your heart, the pulmonary valve is one of the "best". It is a rather passive valve and is one of the most easily replaced.<br><br>
Best of luck to you on any upcoming procedures. I will keep you in our thoughts. I am not usually on this board, so pm me if you want to talk!<br><br>
~Heartmama
 

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Discussion Starter · #7 ·
Wow, thanks for the reassuring stories. I feel like I have really come to terms with things. We are going through some things with my other dd that have me more concerned right now. It has made me see that at least with Becca, we know the problem and worse case scenario is angio. Not too bad. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/shrug.gif" style="border:0px solid;" title="shrug"> It is the fear of the unknown that is scary. I will update after we get home from the cardio on Wednesday. I am glad to hear that both of your children are doing well. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/orngbiggrin.gif" style="border:0px solid;" title="orange big grin">
 

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Just wanted to jump in because my son has a heart defect too. He has 3rd degree or complete AV block, which is a disorder of the cardiac conduction system. For some reason his AV node does not work so the brainwaves that tell his heart to beat don't get through. Of course his heart's natural pacemaker still knows that it needs to beat. So his heart rate is very slow, average of 50 bpm. At some point he will need a pacemaker.<br><br>
We go to a pediatric cardiologist at Duke University Children's Hospital once a year for an EKG and then he does a 24 hour Holter monitor too. He had an echo the first time we went, which was on his 1st birthday, but he did not have one the last time we went just a month ago. Thankfully his EKG and Holter results were fine, so hopefully we won't have to go back for a year.<br><br>
At this point he has no symptoms- lack of energy (ha!!), fainting, sleeping too much.... He will have to have a pacemaker by the time he is 15, but his cardiologist assures us that even with a pacemaker he can lead a completely normal life. He won't be able to play football or wrestle (fine with me!) but he will be able to play all other sports.<br><br>
I hope your appointment goes well on Wednesday Stephanie.
 

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My daughter has two different heart abnomalities, pheriphial pulminary stenosis, and super valvual aortic stenosis. Finding these ultimately ended up with a diagnosis of Williams Syndrome, a rare genetic disorder. After reading your post I was reminded of our first few weeks with my precious daughter. I wanted to tell my story not to worry you about other possibilities, although I am afraid that it might, but to give you some advice on watching this thing and choosing your childs medical team.<br><br>
At one point after the heart murmer was found right after she was born we too had the diagnosis of puliminary stenosis. We were actually schedualed for a balloon proceedure. Fortunetly we were working with Denver Childrens and the team of pediatric cardiologists there who were familiar with genetic conditions associated with heart defects. One of the pediatric cardiologists chose to re-do her echo cardiogram right before the proceedure and it revealed the true story. Her fist echo was no a sedated echo and she was wiggling so it did not give a clear picture. The other heart defects were revealed.<br><br>
Here is some advice having been through this. It is really scary, at least it is for me but I found some advice early on that h as helped me, "you are your child's advocate do what you think is best." Also use a pediatric cardiologist and if possible work with technitions, the folks who do the echos and ekgs, that have experience with children. I always ask for a sedated echo, that way I know they are getting the clearest picture possible. If you can get a second opinion preferably at a repitable Children's Hospital, do so. We did and we are blessed with an early diagnosis of Williams Syndrome. Having a Williams Syndrome diagnosis this young is rare, often the children are no diagnosed until they are 3,4,5 or even older.<br><br>
A bit on record keeping. Keep all her records in a binder readily accessable. I always ask for the cardiologist to send me the write up as well as to my Primary care provider. This has been very helpful in doing research on the web about her conditions.<br><br>
Enjoy your precious little one.
 

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Discussion Starter · #10 ·
Morning mamas. I've only got a minute as I have to get everyone up and moving. Becca saw the cardio yesterday and everything is fine. Her pressure gradient is the same which means she does not have to go back until 6 months. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/partytime.gif" style="border:0px solid;" title="partytime"> Thanks for all the prayers and support.
 

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Wonderful! It sounds like she has a mild case. That is really great news <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">
 

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Hi! Glad to hear she is doing well. My daughter has pulmonary stenosis and is on a beta blocker for hypertropic cardiomyopathy. She has Noonan's Syndrome. If anyone ever wants to talk please pm me!
 

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Good to hear all is going well. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/orngbiggrin.gif" style="border:0px solid;" title="orange big grin">
 

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Hi, my son also has tetralogy of fallot with very severe pulmonary stenosis (one part of the defect). He had a BT shunt put in at 15 days old (was in the NICU on oxygen and special meds to keep his duct open from birth) and then had full repair at 3 months old. He is 9 months now and doing great--even a little advanced developmentally (except for food--doesn't like to eat solids at all!) He had a transannular patch put in his valve, which basically means that the valve was glued shut and they cut part of it away and put a patch made of part of his pericardium (part of the sac around the heart) to open it. He has about a 20% chance of needing further surgery later in life, most likely valve replacement.<br><br>
If you have any particular questions about surgical procedures I would be happy to answer them as I have done a lot of research on it.<br><br>
We also held him nonstop for the first 6 months of life--you get used to typing one handed.<br><br>
It was so very difficult but you will get through it!
 

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Stephanie, I had to chime in on this thread. I have pulmonic stenosis. Mine is termed "trivial". I had to see a cardiologist for the first 14 years of my life and had a catheterization (term?) when I was about 4 where they sent a tiny camera up into my heart. Anyway, at 14 they decided I didn't need constant monitoring anymore. Every few years I get an echo or electro but that's it.<br><br>
I never heard about needing antibiotics for a gyno visit. That must be a new recommendation (that I will ignore, :LOL) When I was pg with my first the OB didn't know anything about the defect so she sent me to a cardiologist. He told me that this type of defect is completely not an issue in pregnancy or childbirth and wouldn't affect me badly at all. He said at most I’d need antibiotics in labor but it wasn’t really necessary (loooooooong story but I got bullied into taking them by the sOB). When I was pregnant with my second the midwife knew better than the OB and didn’t make an issue of it at all and didn’t require antibiotics in labor either.<br><br>
I stopped taking antibiotics for dentistry. When I was a child they only recommended them if I had dental surgery. Now they recommend them for not only surgery but fillings and even simple cleanings! I have done the research and I simply don't think it's necessary for me. I think the minor chances of a problem are outweighed by the negatives of taking antibiotics every six months for the rest of my life. That's my choice though, and as I said, my defect is trivial.<br><br>
The biggest affect on my life was that every time strep throat went around I had to take antibiotics prophelactically (sp??? <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">) When I was in my 20’s I got strep throat and didn’t even realize it for days (I have a pretty good pain tolerance). It was quite the anti-climax since I’d always been told it would be so awful.<br><br>
Anyway, I just wanted to say all this to you. It really has not affected my life at all. And to be honest, it can be fun to go to the cardiologist as a kid. My mom and the doctor did a great job of making it not a scary thing. They answered all my questions, let me look at all the equipment and I was the only kid in class who got to take EKG readings in for show and tell <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/orngbiggrin.gif" style="border:0px solid;" title="orange big grin"> Actually, between mom and the nurses, I had such a good time at the hosptital when I was four that I feel very relaxed in them. And now as an adult every now and then a cautious doctor sends me for an echo and WOW those things are cool! I am having another one soon (it’s been awhile) and I’m actually looking forward to it. I don’t mean to trivialize your worry, but just wanted to say that your attitude with your daughter will go a long way to her being ok with this.<br><br>
I hope she is doing well and that it turns out to be trivial <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">
 

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My ds also has tetralogy of fallot. Like Sleepymama's ds, they put in a B.T. shunt when Sam was 17 days old (which was only about a week before your little guy had it done I see, Sleepymama - January 1st!). We are awaiting the full repair, which will probably be in the next two weeks.<br><br>
Sam has been doing amazingly well with his shunt. After it was put in, he immediately got stronger and was able to cry for the first time. Unfortunately, he never did cotton to breastfeeding after starting on a bottle when he was in the incubator for his first few days and then not having enough strength to suck hard enough to get the flow going (I've had a breast reduction, so it would have required more of the little guy). By the time he was out of hospital and strong enough to suck he didn't want anything to do with my breasts <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"><br><br>
I am dreading his re-hospitalization; it will be much more challenging this time as he will be aware of everything going on around him (including the pain) and will want me or his daddy there all the time. But I just want it over with so I can stop thinking about it all the time. I will probably have some questions at some point for the two mamas here who went through this same repair.<br><br>
Thanks for the link, Muldey. I will send that to all my friends so they understand what Sam's will be getting fixed. I'm not very good at explaining this stuff.
 

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Rachel, as hard as it will be it is good that he lasted this long with the shunt--the older and stronger the baby, the easier the recovery (so the nurses told me--many older babies were home within 48 hours!!) Iain had trouble getting off oxygen after his repair and was in the hospital 5 days and they almost sent us home with oxygen for a week (the heart needs time to get used to working right according to the surgeon--that's why his sats weren't great immediately after surgery.)<br><br>
I agree, the second surgery was WAY worse then the first. I was in total shock after his birth and was definitely worried about him, but his time in the hospital was easier because he slept the whole time (meds, jaundice etc) and it's horrible to say but I just didn't feel as attached to him as I did by the second. He looked way worse after the first surgery however--keep that in mind! Also by the second he was in total high needs mode so I had to hold him practically the whole time after he woke up from the surgery, tubes and monitors and all. My advice is do what you think is best for your baby and don't listen to the criticisms of the nurses. If you know your baby will be more comforted being held, by all means hold him. We stayed with him 24 hours a day after the first night. (We went home to sleep the night after surgery since he was sedated and we had had a really bad night before surgery after he had a heart cath and was on oxygen after the cath because his sats were in the 60s)<br><br>
I'm happy to answer any questions about the surgery. My son has a pretty severe form of TOF and had almost no septum between his ventricles and almost no pulmonary valve at all. They were unable to put a big enough shunt in because he has an abnormal right lung and that's why he outgrew the shunt so fast. They were hoping to wait until 4-5 months to do the repair, but he started turning blue around 2 months and had the repair at almost 3 months old. His repair was an emergency even and we almost checked him into the hospital so he could be monitored the weekend before.<br><br>
It was awful--it's a very hard thing to go through--but you will be amazed at the change in him! He'll be pink and so energetic afterwards. If you want to see pictures of our surgery check Iain's website <a href="http://pages.ivillage.com/ssleepers" target="_blank">http://pages.ivillage.com/ssleepers</a><br>
and click on "Iain's heart"<br><br>
Also you would never know he had 2 heart surgeries! He is even a little advanced developmentally, is almost walking at 10 months, is pink and chunky (if a little small for his age) And his scars have faded to tiny pencil lines.<br><br>
I feel for you about the breastfeeding too--we have never been able to exclusively breastfeed but that's my fault, not his. <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/greensad.gif" style="border:0px solid;" title="greensad"> I EPed from his birth but never developed a full supply and he has been supplemented from week 1. It took a while for him to learn to BF but by about 4-6 weeks he was nursing several times a day and now he loves it. I tried everything to increase my supply--herbs, pumping, reglan, domperidone, marathon nursing, and nothing has helped (well the domperidone helped a little). Truly that has been one of the hardest things to deal with--my body's failure to give him what he needs. He also was allergic to dairy (is over that now thank goodness!) but had to have alimentum formula and every day I wished and wished (and cried) for more milk.<br><br>
bf.com published our breastfeeding story--anyone who had similar experiences might enjoy reading it.<br><br>
Sorry for the very long post but feel free to pm me if you want to talk!!<br><br>
Steph<a href="http://www.breastfeeding.com/reading_room/pump_room.html" target="_blank">http://www.breastfeeding.com/reading...pump_room.html</a>
 

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I mistakenly said that the surgery would be in the next couple of weeks; I meant to say *months* (have I mentioned that I am chronically exhausted?)! It will probably be in December, it looks like.<br><br>
I am stunned by the news that some babies go home withing 48 hours! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/jaw.gif" style="border:0px solid;" title="dropjaw"> Sam was in the hospital for 10 days after his shunt was put in; they told us this one would have a longer recovery time - at least two weeks. What were everyone else's babies' recovery times?<br><br>
Iain is a cutie! Thanks for sharing the pictures.
 

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Well I think our surgeon is pretty extreme in this--he tries to extubate babies in the OR when possible (Iain could not be both times but was extubated the next morning after the first and the evening after the second) and he really wants babies to go home soon because he thinks they recover better at home. I wholeheartedly agree! Two weeks sounds a little long though, if there are no complications! The main issue is oxygen sats--once the heart gets used to working normally and there are no issues with infection and the baby is eating and drinking (and pooping/peeing) OK I think they can go home, but that's just my opinion.<br><br>
But there is so much difference among surgeons on issues like timing of surgery, what to do about the valve (when it needs to be completely removed) etc. I've met a lot of TOF moms (and other heart moms) on the net and we've all had such different experiences. What area of the country do you live in? We had our surgery done at Loma Linda Children's and were really happy with the hospital, our cardiologist, and especially the surgeon, Dr. Bailey.
 

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We live in Canada, so I'm sure there is a very different philosophy toward hospital procedures! Sam surgery was/will be performed by Dr. Sett at Children's Hospital in Vancouver. I think he is excellent, as is everybody who cared for Sam there.<br><br>
We are still waiting for Sam's heart cath, which will be done on December 1st. So I'm guessing the surgery won't be until January. I wish it could be done in December, as that is the slowest month for DH's business. Oh, well, we'll cope no matter when it is.
 
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