Newborn in CHF with VSD & ASD

[mshanson]

Our 17 day old was diagnosed with early congestive heart failure today, as a result of a moderate sized VSD, perimembranous, and she also has a small ASD, both have a L-R shunt. Normal L aortic arch. Her CHF symptoms are: tiring during nursing, retaining fluid, rapid breathing, I forget the exact term they used, it involved the word "subcostal" but it has to do with seeing her stomach/sides sucking in on breathing. Also, her pulse while normally good, she is having some tach attacks, and last night went up to 200 bpm.
What I'm wondering, is what are the chances of these holes, especially the larger one, closing on their own? Given the fact that she has two holes instead of just one, and the fact that she's already in CHF. Will she likely need surgery? They've started her on Lasix.

[CHELLETO6DOGS]

I am not sure about the formulas, I know that the 2 things his cardiologist put him on were high in calories.
about the message, I just sent it to you about 1/2 hour ago.
i can only hope that her doctor will refer her sooner. I am not sure if her lung would sound "clear" or not they may just sound "wet" the coughing is normal from what we were told with Chris as that is part of the heart failure. I am so glad the ER staff is supportive and telling you not to wait.
Good luck and I will talk to you later
Michelle

[mshanson]

I just read your message from last week, don't know why I didn't see it earlier, sorry!
They really didn't say when to go to ER or to call, just to "not hesitate".
She makes some of those grunting noises, and some minor coughing. Nothing major, nor all the time, just off and on throughout the day. Which baffles me since her lungs are clear??
I really don't know what she's doing weight-wise. She went from 6 lbs 10 oz to 7 lbs 10 oz in one week flat, but the doctors said that was likely just fluid retention. So how do they know what is fluid and what is actual weight gain???
The ped said that it definitely looks like open-heart surgery, and that they'll want her to be 8-10 weeks old AND weighing at least 10 lbs.
I have no idea when we see the cardiologist, so far they're saying at a clinic in September, but I'm really not comfortable waiting that long. But here in Canada, we can't just up and take her to a cardiologist, it has to be done through referral, so the ped has to refer her.
We see the ped again on Thursday and I'm going to talk to him about her diet. She's not eating enough (about 15-16 oz per day). Wondering about supplementing with Alimentum or Neosure?

[CHELLETO6DOGS]

I am sorry that she isn't really thriving as she would hope to. is she maintaining her weight, have they said anything about putting her on a "special" diet Chris wasn't as young as your daughter, but he was failing to gain/or keep his weight. so they started him out on corn oil and caro syrup in his formula to help give him calories. it does sound gross but he drank it. another thing i was told and now am just remembering. if she is drinking from a bottle, try to change the nipple to a preemie one they don't have to use as much energy in sucking, this is what Chris' nurses told me to do so hopefully he wouldn't tire so easily
how are YOU doing? I know how scary this is been there. have the doctors said what the plan of action is going to be? i know when Chris did this it meant surgery sooner then later (his hole was 10mm VSD) and he had an ASD and a PDA as well. his ASAD was very small like your daughter and they said it will or should close on its own and if not it isn't really a big deal, when Chris went for his heart surgery at 3 1/2 months old while they were in there, they told us that they put a few stitches in his ASD to close it since they were already in. then they ligated his PDA.
good luck and I hope she will stablize  oh one thing that helped him breath easier, was and we saw them do this in the hospital when he was 5 weeks old  (after he was off the ventilator) I forget what they are called (I just went blank) it is a pillow that goes around the mom so it will help her with the baby while breastfeeding, a boppy or something like that and way we had the bassinet set up and put that in there so the fatter part was at his head and the opening was around his waist this will help some with breathing not much but like the nurse told us if you have a cold you can breath easier sitting up right then you do when you are laying flat. they did tell me to check on him regularly with this. trust me I didn't let him out of my sight for a long time since the day he was born.
Good luck
Michelle
Michelle

[CHELLETO6DOGS]

Thank yo for clarifying that viagra is not the same as lasix, I do have a friend's mother who is on it, i didn't think they wree the same but i didn't know.
Michelle

[mshanson]

They had to increase the Lasix yesterday as after being stable for a week and half she started getting worse, her heart is now enlarged, pulse is increasing, she had another large fluid retention and breathing was getting more rapid.

[Jeffrey R Boris, M.D.]

Dear MSHanson,

I believe that the term for which you are searching is retractions, which is where the skin ***** in either below or between the ribs with increased effort of breathing.  We do see patients with ventricular septal defects (VSD) get congestive heart failure (CHF), and it certainly can happen as early as you are seeing it with your daughter.  The atrial septal defect (ASD) is likely inconsequential in this, and, if it is truly small, has an excellent chance of spontaneous closure.  However, the VSD is the main culprit here.  Even if I saw your daughter’s information and studies, it would be impossible for me to predict the likelihood of spontaneous closure of the defect.  That said, it doesn’t have to close all the way—all it has to do is to get smaller to restrict the amount of blood flow going across the defect to reduce the CHF.  And, the way that this happens, in part, is for the baby to grow.  There are several medications that can be used to reduce CHF symptoms that will allow her to grow.  Lasix, a diuretic, is one of them.  Your cardiologist should keep a close eye on her, ensure that nutrition is optimized, and ascertain that medical therapy is maximized if she does not respond to present therapy.  If she continues to fail escalating therapy, then she will probably need surgery to close the defect.  However, only she will be able to “tell” us if she needs to go this far.

And, captopril is not sildenafil (Viagra).  It is an angiotensin converting enzyme inhibitor.

[CHELLETO6DOGS]

martikadragon
no big deal. is that what captopril is viagra? how is your little one doing

the tube feeding helps but don't over feed her. we did that and his tummy got really distened and he threw up. keep giving her the aount you have been and if you see her tummy get big stop and wait a bit. not even sure she is on a tube feeding.
yes indeed ask ask ask docotrs don't usually mind you asking it shows that you care and are involved. actually chances are it will be a nurse you end up talking to and they are really great too
mshanon how are tings going

[protea]

I am happy that you are finally getting some answers.Hopefully they can rectify the situation without surgery but they might not.If you dont know things you need to keep bugging the drs for the answers and to explain things to you.Is she is hospital? Have you considered taking her to the Childrens Hospital for a second opinion?
We are thinking of you and your family and you go through this difficult time.

[martikadragoon]

Cheelet~ WHoops! lol. Your right about it being retractions. I kept thinking back to my LO and he had both.

My LO was on captopril, "viagra", (helps blood flow I think) and lasiks originally. he almost died of a rare reaction to Lasiks so they took him off and put him on a new med.

He was on a tube feeding when he came home after the complications from OHS.

[CHELLETO6DOGS]

I take it she isn't doing any better. I am so sorry the thing that she does when she pulls in at her rib cage is called  retractions and when they get older you can see it in their necks. Tachypnea means rapid breathing.  can't say if she will need surgery, Chris had this happen to and he wasn't thriving at all and they put him when he was 2 days old on digoin and lasix and then when he was 2 1/2 months old he went into heart failure (we knew when he was 2 days old he would have to have open heart surgery his VSD was 10mm. when he went into heart failure the 2nd time at 2 1/2 months old they put him on captipril (something like that ) and ended up with a tube feeding so he could get the food he needs without tiring. they increased his special diet as he wasn't thriving. he had caro syrup and something else i can't remember, that was mixed into his formula, this was to get him the extra calories he needed.
I am glad you took her back to the doctors, what did I say mom's know best :) I am sending you a message
Michelle

[martikadragoon]

Hi, my child has CHF, a large VSD and 2 ASD's along with a PDA. The sides sucked in during breathing is called Tachypnea, and that all is what leads to the high heartbeat.

Here's the thing, if she has failure to thrive, while on Lasiks (which helps get the fluid out) she will require surgery. This is just in my experience as a mom who's gone through it.

Failure to thrive is if her CHF gets worse, the tachypnea and high HB get worse they'll probably first try other medications in addition to the lasiks to get the fluid off her heart and lungs and if it doesn't work, if it gets worse or she begins to lose weight she'll need a corrective surgery.

Cindie