A normal respiratory rate for a 4 week-old infant is approximately 40-60 per minute, so this is definitely evidence that her congestive heart failure (CHF) is more than just mild. CHF occurs when the heart cannot meet the metabolic needs of the body. So, since her heart and lungs are working much harder than they need to be, she is putting calories toward that work instead of toward brain and body growth and development. There are medications that can be used to try to reduce the effects of CHF so that she can grow and not just accumulate fluid. As well, maximizing her caloric intake may be helpful. In the end, though, the goal is to either have her grow enough to restrict the size of her VSD or to be big enough for your institution to repair her defect surgically. She may even need to be admitted for more intensive medical care. That said, there is good evidence to suggest that waiting in the face of long standing CHF can be a risk factor for surgical outcomes. If you are not able to get a satisfactory answer to your questions from your primary cardiologist, though, you should strongly consider a second opinion.
you still can't get into see her cardiologist until Sept? man oh man this is tough for your little one. has anyone said anything about her diest yet? remember i said she might need things like what my son was on. it sounds gross but they have a lot of calories. we you able to find those preemie nipples for her? they helped with the feedings with Chris,even though he wasn't a preemie. Chris at first was admitted for 5 days until he could get the CHF under somewhat of control and that is when they put his tube feeding in because everything was tiring him out and this way he was sure to get his food and calories he needed so much.
as far as her heart enlarged, it might not be true, not saying the doctors are lying, this also happened. she is already having issues with breathing, when taking an xray she might not have been able to take a deep breath and hold it like they have to have when they do an x-ray, this when comparing her lung size to her heart size says she has an enlarged heart, the only real way to confirm this is an echo. i was upset when they told me Chris had this and had to wait 2 weeks to see his cardiologist, and when they did the echo and he said his heart wasn't enlarged he explained why it would seem like it was
goo luck to you and I hope you can get her into to see her Cardiologist now. write me if you need to talk.
At the last check she had actually gained some weight, he told us to make sure that we got a minimum of 16-18 oz into her every day. That she was stable (he did confirm that he really felt her heart is somewhat enlarged) and that we were still fine to meet the cardio in Sept.
But honestly, I think tomorrow when we see him again, I'm going to ask to see the card sooner. She's having serious eating problems:
We thought that she was meeting her daily requirements, I knew she wasn't by bottle alone, but I thought with the breastfeeding that she was. Well I can't nurse for another week because I'm on an antibiotic, and now that she's taking everything by bottle I can see - she's NOT meeting her requirements. She's only taking 12, MAYBE 14 oz a day. And honestly, I don't know what to do. Yesterday for example, from 7 am - 11 pm, the longest she went without eating was 2 hours. At times she ate EVERY hour. But when you're only taking 0.5-1 oz at at time... The (new) problem is, she's falling asleep at the bottle. She's not sweaty at the bottle yet (other than once or twice) but she's falling asleep almost every time now. I did get one 2 oz feed into her yesterday, but it took 50 minutes, and she fell asleep twice during it. We're using Dr. Brown's bottles with Level 1 nipples. Honestly, she sometimes can hardly keep up with those, it just dribbles right out her mouth BUT the preemies aren't working because they're too slow, and she doesn't get as much.
So honestly, I think it's time to be seen.
I know this might sound like a little drastic measure see if they will be will to put in an NG tube in order for her to get the food amount she desperately needs. and if they honestly think it is the fluid building up that is causing her weight gain, maybe he will give her a higher calorie diet.
sorry i thought the preemie nipples would be better.
I really hope you can get her into the cardiologist sooner then September. aer you keeping a diary of how often and how much she is eating and how long it takes her, keep records of how long she sleep. this may help put things into a little more perspective for the doctors to see. i know I couldn't remember all of this information so i had to write it down. please keep me posted and good luck
One thing you may want to consider is asking her pediatrician to put her onto a premature baby formula that is supplied through your local hospital. When my daughter was born, she lost 7oz of weight; after one months time, she still hadn't gained any weight back so she was put on this formula. She gained 12oz the first week of being on the formula. You might want to ask her doctor about that. Premie nipples probably won't work because the hole is too small and she would have to suck a lot harder to feed which would wear her out. Take care.
I'm sorry about your child. Were going through something VERY similar! Our daughter has an ASD and our cardio isn't helping so much. Our gastroenterologist recently started our daughter on duocal supplement powder for extra calories. Tomorrow is day one in the "experience." If you could please read my post, perhaps we could exchange notes and work together! I've been doing my research as I'm sure you have too.
Please keep me posted on the outcomes!!
Well things have improved a bit! But they got worse, first. By our last check up (this past Thursday) she was down to eating only 10-12 oz per day (including breast feeding). She was falling asleep with EVERY feed. Anyways, her ped was quite concerned, so he called the cardiologist and they increased her Lasix, and added Digoxin and Spironolactone, and we've definitely noticed an improvement in the eating. I mean, she still tires eating, but we're now able to get 15-18 oz into her! However, since the Digoxin can throw her electrolyets out of whack, she has to go for weekly blood work now, since she's still not eating a "normal" amount for a baby her age. They're going to keep her on her current formula for now since she is gaining weight (she gained 11 oz in 2 weeks at her last check!).
So, we're still definitely looking at open heart surgery to repair, just not sure when. We're seeing the cardiologist the last week of Sept, unless things change, and they want to see her earlier. But they said as long as she stays stable on the meds and continues to gain weight, she's okay to wait.
this is great news. this is so frustrating I know and totally understand. hang in there she has a great mom who is looking after her and she will be okay
How are you holding up. i know it is easier said then done when people say don't worry so I won't say that ..lol...
I'm still a little frustrated at not seeing the doctor sooner. I mean she's eating better, but her breathing is no better: she's still breathing as high as 70-80 when resting, she ALWAYS has retractions no matter how fast/slow she breathes (never below 50's). Yesterday I was a little concerned because she had a panting episode, it lasted about 5-6 minutes, I was getting ready to take her to ER, she was breathing around 70 but breathing HARD, literally sounded like she was panting for breath. It went away, hasn't happened since, but that same night, I noticed her hands, lower arms and feet were really clammy. Again, they're fine now. I don't know if I should call the doctor or not, since the symptoms are gone, or mention it when we see him next (one week from today)
I would put a call into the drs office.It costs you nothing to talk to them or at least leave a message for them.Whenever my son had anything out of the ordinary even if I thought they would think it was silly I would still make sure.I actually called my sons cardiac dr this past week as he is running fevers again and his vein in his neck feels like it working really hard.He said to me that he has always been like that and will be cause of his arotic stenosis.He said that we never noticed it before but never spoke to me like I was a dummy or anything like that.Anything that is out of the ordinary for my son I report just to make sure.I think a phone call wouldn't hurt.we are still thinking of you guys
I know from my research that "panting episodes" and poor breathing is a serious sign of congested heart failure. I would not only get a second opinion, but demand that someone start taking this more serious. A mother's intution is always right!! I'm not sure where you live but Children's Hospital of Philly is AMAZING!! My daughter only has an ASD and is pushing to get through the day. I'm a walking mess, and I couldn't imagine the bags under your eyes, or the amount of hours you are up at night. I would also consider getting in with a nutritionist or gasto. Any extra calories right now would be huge!!
Funny, I called the ped's office and told them about her panting & arms/legs getting clammy, but they said it wasn't related???
It sounds like you spoke to the nurse and not the doctor????
WOW! I really understand your frustration! UGH!!
Our daughter sweats often; usually while she sleeps, eats, plays, and sometimes for no reason. Her cardiologist told us that her sweating is probably a symptom of her ASD. The panting and ANY "asthma related symptoms" are signs of CHF. Usually it means surgery needs to happen!! Here is something that describes all of her recent issues that you've been describing.
I'm not trying to place fear in you, but as a mother going through this myself I know how frustrating it can be. Our pediatrician has bent over backwards for us and then some! He has even admitted to me that he was very upset when they found the hole in her heart and he never heard the murmur. However, NO ONE heard the murmur.(27 people to be exact) So he was a little more relaxed. If we were late for our weekly weight checks he calls to make sure everything is ok. While she was hospitalized he called everyday to check on progress and see how we were handling. I think not only you need a second opinion, but perhaps another pediatrician!
Wow. That's good service. Yes, it was the ped who said he didn't feel those were related to her CHF, though I REALLY find that hard to believe. Since we're in Canada, we haven't even seen the cardiologist yet, and have to deal with the pediatrician until we see the card (in Sept). She's definitely going to have surgery, I know that, but we're not sure when. They think sometime this winter, but I honestly wonder if it can be put off that long.
I tend to agree with heathmcmi.If you can I would ask for the cardiologists number and call him yourself.Not sure what you are allowed to do in Canada but sometimes I had to go over my peds head and call other specialists myself and speak to them.I also took our son to a different ped to get his opinion.When the his reg. ped saw what I was doing then he stepped up his game and started helping us help our son.Your child is so little and we were told that if we had waited a week longer our son would not be with us today.Granted he is still having issues but not nearly as bad as then.I really hope you find some answers soon.we are thinking of you and your family all the time.Our hearts go out to you and to the other mom who is having to suffer through this as well.