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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.<br><br>
Just wanted to let you know what was going on with us. I'll keep you updated.
 

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I'm new to this community so don't know you well yet, but big hugs to you and your dd. It must be so scary to get information like this, yet you seem very well informed. But with 4 other little ones, her need to be held so much and her difficulty with nursing will be very tiring for you. Do you have help?<br><br>
Please keep us informed about her next cardiologist visit.
 

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Oh boy. You certainly have your hands full. You baby is so lucky to have such a loving mama. All the nursing and holding and all the TLC will make a huge difference to how much all this medical stuff affects her personhood... I hope that makes sense. Staying connected to her is the greatest gift of all right now.<br><br>
I'm going to be praying for your whole family.
 

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Steph,<br>
Sounds to me like the profs you are dealing with are quite sensitive and that is helpful in stressful times. And you are just being the best mama, Becca is lucky, but then again, she knew what she was doing when she chose you as a mother.<br><br>
I'm thinking of you and yours, and sending much healing your way.<br><br>
Mamasoleil/samson<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/hippie.gif" style="border:0px solid;" title="hippie">
 

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tnrsmom, Just wanted you to know that i was born with the exact same "defect" and had the balloon angioplasty at age 14... this was 1984 and it was a fairly new procedure that was done at the San.fran. children's hospital. It was a complete sucess even though i probably should have had the procedure much earlier in life.as the pressure was very high when i finally had it done and they said i may have died had i not had it done.<br>
I didnt have to have it repeated and the dr's said i most likely won't ever have to.. i just watch for signs such as shortness of breath. I hardly ever think about it... I will always have a murrmur and i do somtimes have a skipping of a beat if you will.. never bothers me. Well sorry to ramble.. just wanted to share.. Your girl (my daughter's name is Becca too, which is why i opened the thread!) will be just fine.. it's good to have it taken care of now, she will not even remember it i'm sure, just hold her and love her and all will be fine..<br>
Hugs,<br>
Ava
 

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(((((( Stephanie & Becca )))))))<br><br>
Thanks for the update on your sweet little one! Like life isn't full enough without all this to go through now, huh? <img alt="" class="inlineimg" src="/img/vbsmilies/smilies/rolleyes.gif" style="border:0px solid;" title="rolleyes">: But your composure is amazing, and it sounds like you are doing such a wonderful job to love her & give her the best start you can! <img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/love.gif" style="border:0px solid;" title="love"><br><br>
Hang in there.
 

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Discussion Starter · #7 ·
Thank you all so much for your love and support. I feel so blessed to have found such a wonderful community of friends.<br><br>
Ava, thanks for sharing your story. It has given me even more hope.<img alt="" class="inlineimg" src="http://www.mothering.com/discussions/images/smilies/smile.gif" style="border:0px solid;" title="smile">
 

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Thank you so much for sharing your story with us. It is a beautiful story of love and courage. You are doing an excellent job. Being held 23 hours a day is great! I also held mine almost constantly as well. Now my 11 month old is VERY independent.
 

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Thank you for posting this update! It must be so scary but you sound like you have it so together. Please keep us updated and take care of yourself so you can take care of your baby, yk?
 
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