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December 2016 Moms
caffeinenut
member
baby health problems
caffeinenut
member
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?
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
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.
keep us posted ❤
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!
@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.
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.
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.
@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.
Hugs
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.