December 2016 Moms

baby health problems

I was looking for a thread to talk about taking our babies to medical specialists, but I could't find one.  So I started one of my own.  

At the hospital, 2 days after my LO was born, the pediatrician on call heard a heart murmur, but wasn't too worried yet.  He said that sometimes it is normal in newborns and that it would be followed at each visit.  At her one week check up, her pediatrician (different doctor, same pediatric group), heard a murmur and suggested my FI and I take her to see a specialist.  She gave me the name of a local pediatric cardiologist who is highly regarded and has been in practice for 30 years.  Today was our appointment and after running an EKG, BP, and Pulse Ox, and then listening to her chest and talking to me about our everyday activities and how she handles things such as feeding and crying, and pointing out how fast she breathes and how much her chest moves when her heart beats, he wanted to perform an echocardiogram because he suspected she had a ventricular septal defect (VSD), and wanted to confirm.  He does the echos in his office, so we had one, and he confirmed VSD.  So basically, my LO has a hole in her heart.  Now, the cardiologist said that these can close up on their own, however, in his experience, a defect as large as what my daughter has, generally doesn't close on its own.  

I would have thought that I'd have been freaking out over this, but I'm not.  I understand exactly what the cardiologist was talking about (I have a little medical knowledge background).  I'm not sure if I just haven't fully accepted it yet or I've accepted it completely and am looking forward to the next steps.  But the diagnosis does explain a lot, such as why it is so hard to feed her, why she only eats a little bit each feeding, why she falls asleep during feedings, etc.  Why I have to constantly wake her up to feed her during the day.  Her heart and lungs are working harder than they should be, so she gets exhausted quickly.  My FI is more upset and worried than I am, I think.  He also wants to know if we should get a second opinion.  I'm not sure another opinion is necessary.  This pediatric cardiologist is one of the best in our tri-state area.  Also, he brought up a symptom I didn't even know was a symptom until he said something, but it is something that happens all the time.  I had no idea that babies really don't sweat, and that the sweat on the back of my LO neck and when I hold and feed her is a symptom of VSD.  I just assumed it was because we keep the house warm and because I am always warm, I was making her warm.  Nope, it is from her body working overtime to pump blood and oxygen through her body due to her defect.

So basically, we have to monitor exactly how much she eats and when, since babies with VSD don't really gain weight.  They use up all the calories and energy just pumping blood and oxygen through their bodies.  We have to watch her breathing, her spit ups, her color (though it is very good), how long she sleeps, how much she cries, and go back in a week to discuss how she is doing and to decide if we need to start medications yet.  At some point she will probably need surgery to fix the hole, unless it closes up on its own (thought the doctor is doubtful about this happening).

Anyone else out there have medical issues with their new LO and want to talk about it or vent?  

Re: baby health problems

  • I don't have anything to add to this thread right now, but I wanted to say I am thinking of you and your LO. We all process difficult news in different ways; there is no right way. It sounds like you're in great hands, and I'm glad to hear she will get the help she needs. Take care.
  • It sounds like you are taking the right steps for your LO. I had no idea about those symptoms. While DS (5 weeks) is fine as far as we know, DD2 had a small heart murmur. The pediatrician was hoping that it'd close on its own and it did after a couple years. But she didn't grow well from age 1-3 years, she was teeny. We had to put butter on all of her food and cream in her milk to try and get extra calories in her. She is 5 now, and the murmur closed up last year, and she has started growing more normally.
    While it sounds like your LO's condition will need more attention, it also sounds very treatable. Which is always a good thing. Hugs to you and your family. 

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  • Hugs, sounds like you have an awesome dr and the right steps in place moving forward. A mom in my other BMB went through this with her LO and wound up needing a procedure done early on. I remember her saying her LOs sweating was concerning her. She's now a healthy 2.5 yo, but it was a scary time for sure when it was going on. 

    keep us posted  ❤
  • We have a medical issue, but we had some advanced warning, and won't really know the extent until she's older. I'm a carrier for Fragile X, an autism like disorder, and I was 50/50 is she would get it. She did but we don't know yet if she's just a carrier like me, which has more issues down the road (mostly reproductive wise), or if she is affected with the syndrome. The blood was drawn so we're just waiting now.
  • Our pediatrician heard a murmur just last week (baby was 3 weeks old) and had us get the next available appointment with a pediatric cardiologist. We went the next day and had an EKG and echocardiogram done, which was pretty scary just not knowing what's wrong. They diagnosed him with peripheral pulmonary stenosis, where the arteries going from the heart to lungs are smaller than they should be. The doctor said it's common in newborns and should just open up more as he grows and gets older. If they don't then he will need surgery to open them up. We are praying it all works out on its own. But she also mentioned to watch out for him sweating during feedings because that's a sign his heart is working overtime, which I thought was really interesting.

    Im sorry your baby's diagnosis wasn't what you would like to hear. I'm sure she will be fine though, especially if you're under the best care you can get. I have a friend who has 4 year old quadruplets and just this summer she discovered one of them has been living with a hole in her heart. She just found out via mommy intuition. She knew something was wrong because her daughters heart was beating so hard and fast all the time. She insisted to see a pediatric cardiologist and they found the hole. She had successful open heart surgery and is now completely healed and stronger than ever.  I hope your baby's hole fixes itself and she won't have to have surgery! Prayers! 
  • @cgss11  I'm sorry to hear about the possibility of your daughter exhibiting FXS.  I don't know much about it, but from what I do know, if she is not just a carrier, but suffers from the condition, she may have some difficulties in life, but that she can do very well.  I hope she is just a carrier, but if not, I guess you just deal, and move on.  I don't know anyone with FXS (that I know of), but I have a cousin who has a son with autism, and my FI has a cousin with autism, so I see how hard it can be to have a child with special needs that will follow him/her through their entire life.  It isn't easy, but love makes it all okay.  Please keep us all posted on how the bloodwork comes out, and let us know if there is anything we can do, even if it is just to listen to you vent on this message board.  

    @gigemily09  I know this might sound terrible, but I don't mean it that way:  I'm glad I have someone to talk to about heart problems with their baby.  Now, I in no way wish anyone else has heart problems, but it is comforting to know I am not alone with my baby and that there are others out there who are going through something similar to bounce ideas and concerns off of.  Does that make sense?  

    The sweating during feedings being a symptom completely threw me. I had never mentioned that happened to anyone, family or doctors, and then to have the cardiologist ask about it made me realize that a) my daughter did have a real problem and b) this cardiologist really knew his stuff.  And as for surgery down the line, if that is what is needed I think we will be okay.  We are lucky enough to live in the area of the US where there are 2 of the top 10 hospitals in the country, (one of which our cardiologist is associated with and teaches at) as well as the top hospital in our state is only 15 minutes away.  I feel for those people who have similar problems and the best hospitals to deal with them are so far away.  I'm not sure how I would feel or what I would do if I was in that position.  

    When you mentioned your friend, the one with quadruplets, I feel bad for them, not having found out their daughter's heart issue until he was 4 years old.  Unfortunately, a lot of what I have read about VSD says that many times it is undiagnosed until toddler or school age when it is picked up because of exercise intolerance or poor growth.  That sometimes the murmur is so soft it isn't picked up or worked up as anything serious until other symptoms show up. Kudos to your friend's mommy intuition.

    I was afraid my mother in law would freak out when she was told, but my FI said she was very calm and will pray for us every day (she is super religious).  I expected her to start calling everyone she knows, asking their opinions, sending us information (mostly from Google and all wrong.  You should have seen the stuff she sent me about what I could and could not eat and do when I was pregnant), giving us names of any doctor she has ever heard of, etc...but she isn't.  Or maybe she just hasn't yet.  I'm surprised her priest hasn't called us yet. 

    Keep us all posted on how your son's heart is doing, and whether he does need surgery.  My thoughts are with you and your family as well.  If needed, we can use this message board to talk out our fears, frustrations, as well as all the good things we go through as we deal with our kids' hearts.

  • No I totally agree, I don't wish anyone to have issues with their babies but it is reassuring to know I'm not the only one with worries and concerns. 

    I cant decide if he is really sweating while he eats or if he's just naturally really warm. The back of his neck gets really hot when I feed him, and he gets really red in the face when he's working on pooping or passing gas or even when he's crying. It worries the crap out of me. 

    You're lucky you've caught this so early, that way she will get all the care she needs before it gets worse! I'm sure everything will turn out fine!

    keep updating this thread for sure! It's nice to have a great online support system. 
  • My boy twin has medical issues- He wasn't eating well and we found out last week that he has a deletion on his 16th chromosome and will have special needs through the rest of his life  (though we don't know the extent until we get there). His main issue began with aspirating the milk he was drinking, though it took 3/4 weeks to confirm that.

     He just had surgery to have  his feeding tube placed  so he can finally go home after 6 long weeks in the hospital ruling things in/out. We were so heartbroken to find all this out.

    He also has/had a murmur (PDA?) Had an echo to confirm, but now they aren't hearing it. We'll have another echo soon to confirm.

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  • @Toller  I'm sorry to hear you are having medical issues with your son, and don't really know the extent of them yet.  That must be incredibly difficult to deal with.  At least I know what is going on with my girl and what we are in for, for the most part.  I can't imagine being told my child has a medical issue, and not knowing exactly what it is until it shows up.  How long does he need the feeding tube?  Is he always going to have feeding issues?  As for the heart murmur, sometimes they do go away in babies, but I would definitely keep on top of that.  I assumed my daughter's murmur was one that would go away, and as it turns out it isn't.  But if it is PDA, I would think the murmur would still be present.

    @gigemily09  I can tell you that my daughter sweats on her neck when she eats.  She has a full head of hair and it goes down her neck.  The hair gets very wet when she eats, hence sweat.  She also gets very red in the face when crying.  She even clenches her fists and grunts sometimes when she is trying to poop.  I worry that she may start having more trouble that I realize when it comes to her heart pumping or her breathing and that I won't get her help fast enough.  As a FTM, and really having no experience with babies, I'm not always sure what is normal and what isn't.  That is probably the scariest part of this whole thing for me.  That I might make an mistake or miss a major symptom or problem because of my inexperience.
  • Oh, as it turns out, this VSD may run in the family.  Apparently (and my FI did not know this), his grandmother was diagnosed with what sounds like VSD as an adult.  My FI's aunt was over today and when I told her about our daughter's heart issue, she told me about her mother having been diagnosed with a small hole between her ventricles when she was an adult and had it surgically fixed. So now we know that it is possibly genetic.  
  • @Toller I'm so sorry about your son. That is a lot to process and prepare for. I'm hoping for the best possible outcome, I know when there are chromosomal abnormalities that there can be a huge variance in how severe the symptoms are. Hopefully your sons are as minimal as possible. 
    Hugs  <3

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  • @caffeinenut that's exactly how my boy is. He has a full head of hair too and his neck gets really hot, but I don't think he's actually perspiring. Is your daughter's neck really wet when she eats or cries? He gets really red in the face as well and clenches his fists. I was just telling my husband that we need to really stay on top of him and not let him get too upset where he's hysterically crying. It just worries me that his heart is overworking. But maybe that's just normal for babies? I don't know, I'm a FTM too so I really have no idea. And googling things doesn't help, just makes me more worried. :( 
  • @gigemily09  Yeah, her neck and hair are actually wet.  I feel like I should wipe her down with a cool washcloth after every meal.  I also try not to let her get too upset, because I am afraid it will overwork her heart and lungs too much.  Like you, I'm not sure if that is something to be worried about, but I am.  I plan to ask the cardiologist when we go on Friday.  Googling can be very scary because there is so much misinformation out there and anyone can post anything.  I try to just use sites I know are medically reputable and controlled, like American Heart Association, NIH, sites associated with top hospitals like the Mayo Clinic, etc.  I also don't know if this is because she has a medical issue, or just the fact that I am a FTM, but I get very overprotective when someone else holds her.  For example, my FI's aunt was over yesterday and held her for a while and I kept hovering, and it was all I could do not to snatch her back and hold her in my arms.  I sometimes get that way when my FI holds her, too!  I don't like it when anyone else holds her.
  • Update...the cardiologist appointment was moved from Friday to yesterday.  She gained almost a 8oz in 5 days!  However, her breathing may be a bit more labored, especially after feeding, so we are starting her on lasix to help flush the excess fluids from her lungs.  Even though she did well in gaining weight, the doctor did say that that isn't usually the norm, and not to get discouraged if it stops down the road.  That it won't mean we aren't doing the right thing, just that her illness is catching up.  I'm hoping that she stops gaining weight later rather than sooner, because they will be the first step towards surgery if her hole isn't closing up.  And I'd rather have her have surgery when she is older and stronger.  
  • Update:  the cardiologist now added in digoxin twice a day, and we have to mix her formula up so it has 20% more calories, since she did not gain any weight.  He seemed more concerned this week.  Here's hoping she gains weight and does better for next visit, or she'll need an NG tube for feeding.  Poor kid.
  • I hope she dies well and gains some weight @caffeinenut <3

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  • Thanks @yellingbanana.  We had an other check up today with a different cardiologist.  The one we usually see was covering the hospital all week.  Anyway, really liked this guy too.  She gained some weight, 7 oz, but you can still see how hard her heart and lungs are working.  The doctor calculated that she still isn't eating enough, so he upped the lasix to twice a day, and a slightly increased dose, hoping that this would take some pressure off her lungs and leave her with some more energy to eat.  Had another echo, and everything still looks the same, maybe slightly improved in that she got a little bigger, meaning her heart got bigger, but hole stayed the same size.  At least it isn't worse.  We go back next week again for another check up.  Sometimes I feel like we're not really going anywhere with this, just treating symptoms.  Then I realize that is exactly what we are doing, treating symptoms to buy us time to see if she will need surgery or not, as well as to make her stronger if she needs surgery.
  • Hi everyone!
    Sad to hear babies have medical issues, good think doctors seem to know how to take care of them.
    My baby will be 11 weeks this monday, he was diagnosed with ECD at one week old, he will need surgery when he is 4 or maybe 6 months ols, as soon as he is ready. He now takes the lasix once a day and is on a 24 calorie per ounce diet, he was a small baby and has been having trouble gaining weight, he is going slow but his cardiologist says we are doing a good job.
    Is really hard to deal with baby health problem I still cry sometimes when he is sleeping, my husband helps me a lot, he keeps telling me I shouldn't worry too much because doctors know how to fix it, they have been doing it for 30 years.
    His side of the family knows about our baby's health problem, they were here for the holidays, but not my side of the family, they live like 5 hrs away, my parents only came when the baby was born and left the next day. I haven't had the nerve to tell them over the phone, I know I have to tell them real soon, they probably would like to be here for baby's surgery. I'm afraid to travel with the baby, will ask the doctor next visit about that.
    Hope each of you can find the strength to deal with their baby's health, hope your babies get well real soon. Hope to see more updates and good news. I will pray for all of you.
  • I was born with a VSD and it wasn't discovered until I was 6 months old. I wouldn't gain any weight or anything so they operated because my hole was the size of a penny. The Pediatric cardiologist wouldn't tell you anything that wasn't true. He/She is going to do everything they can to make sure your little one makes a full recovery and your little one will. It's 100% worrisome but have faith in your doctor. I made a full recovery and no longer have a hole in my heart. I now only have to see my cardiologist every 3 years but at my last appointment my heart was completely healed. Your little one will have to be watched closely by you and his/her doctor and may not be able to participate in physical education in school or do too much strenuous activity for a while until the doctor gives an all clear but it will heal and she/he will feeling better and recovered. Just be patient and pray on it and I will be praying for it to heal on its own also. You can message me on here or comment if you need to know anything else or just would like to talk about it. @caffeinenut
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