they said my 4 mo. heart is too big :( LONG

edited July 2011 in March 2011
I was sleeping soundly when all of a sudden my cell phone rang. Sleepy, I answered.
"Hello."
"Is this Steven's mother?"
"Yes it is." I replied.
" This is Dr.Cooper from La Porte pediatrics. I am calling because I asked the hospital to fax over the chest x-ray of Steven and his heart is on the large side. I need you to go to the Cardiologist I am referring you to here is the number...... please call them for an appointment right now.

And that was it.

My son Steven (Jake) Had a choking episode about a month ago at 3 1/2 months.
How it happened.
I was holding him on my chest and all of a sudden he fell asleep. I had things to do, like wash the dishes and clean up the living room, fold his little clothes. I thought about putting him down in the crib in his room. I wanted to hold him more so I decided to say i will clean up when his dad gets home. All of a sudden I started to notice that he was making weird noises. I thought it was him crying because sometimes he starts to cry in his sleep. But I quickly noticed it was something else he was gasping for air I quickly turned him around to get a good look at him. His lips and mouth were blue quickly I started performing cpr at the time I was going to call 911 my husband opened the front door; he was back from cashing his pay check. He quickly saw what was happening and said let's go I called my doctor because it seemed like Jake had stopped and snapped out of it. The cpr worked. The doctor said to bring him in they were going to check his oxygen intake. We rushed to the doctors office. He was not getting enough oxygen they said and the doctor said his mouth is getting blue he needs to be taken to the er immediately. So off we went. Rushing, scared, crying and stressing. When we got there as my husband was running in with him to the er entrance I noticed my son started shaking. What I suspected he was having a seizure. I snatched the car seat from my husband put it down fast but gentle and unstrapped him and help him he had stopped. The nurses quickly took him. Lead us to a room and my husband was giving information as we walked. And then they lead us to "the room". The exact room where my two month old nephew was pronounced dead after trying to be revived. He died of SIDS. I started to cry immediatly scared that it was going to be my baby next. The nurse got started on the iv she messed up four times and I was furious. My son was crying so much and I too was crying with him. I finally yelled at the nurse who clearly did not know what she was doing she said ok I will try the Catheder now. My baby was screaming as the tube pierced his little penus. She took it out twice and said could not do it. Finally I told her this is your job!!! You don't know how to do it? Please send someone in who can! And she did. A sweet lady from the post parting floor who was uncharted of taking care of newborns and nicu patients. She stuck the iv in and my son did not even cry. He did cry when she did the Catheder but she got it in one try. After long hours of waiting blood results chest x-rays and a hurting baby we were told his lungs were fine that it was probably just reflux. Reflux? Really?! I was still not satisfied. I went home trying to soothe and comfort him. I followed up with his doctor a day later after she called me and asked how everything went. While at the doctors office she said she was going to give me a nebulizer. So I drove an hour away to pick it up after giving him his nebulizer I still was not satisfied. After feeling a little confident that my son was ok 1 month later then this happens... has anyone heard about this? My appointment in Webster, tx is not till August 18. I'm scared and worried what if my son needs a heart transplant? Please help.



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Comments

  • UNCHARTED *IN CHARGE
  • That is good you are a strong mama and react appropriately in those situations. I dont have any advice or know much about that but I will pray for your baby. Keep strong mama!
  • Oh my goodness. I hope everything turns out okay. Lots of prayers coming your way.
  • I Was Born Without 2 Chambers Of My Heart, Enlarqed Heart, & Heart Mumor ! They offered a surqery to correct my heart mumor ! But my dad said no cuz of our reliqion. So they never did it, I have had a cardioloqist since I was born. I also went in at the aqe of 5 for chest pain, turned out to be skipped heart beats. I am 18 & still have to see a cardiologist every 3 months, & have to wear a heart monitor overniqht. This enlarqed hear has affected me my whole life, I wasn't able to be in sports, nothinq that can over heat my body & make my heart beat faster. Doctor always told me I could possibly have a heart attack. So I never was in sports, couldn't play outside wit friends or all my brothers !
  • Wow, unfortunately I have not heard of that. I am so sorry you are going through that. How scary that is. I'm praying all us well for you little one. Try not to stress too much until he gets seen. Just be cautious of his behavior & keep a close eye on how his breathing & stuff is. I'm sure hell do fine. I know if people who's babies had a little whole in their heart and it closed up on its own. I know its not the same but maybe that could be the same kind I'd scenario. Praying for ya. Blessings to to you & baby. Try to be positive as much as you can. :)
  • @amab13 , @shanIam , and @Mindy061606 thank you guys so much i have looked up information but nothing has helped if you guys know anything please help
  • Idk about bbys but my boyfriends heart is too big & if its any comfort..he is 21 & doing great. Good luck mama..im sure everything will turn out fine & he will grow to be a healthy man!
  • It sucks so bad & wen I qot preqnant I was praynq my son didn't qet it. My dad wishes to this day he could have done the surqery cuz he sees how it ruined my life. I just thouqht to share my story, I will pray & have yur son in my thouqhts. I hope all qoes well ;)
  • @cgm1113 I'm so sorry did your heart keep growing?

    @melinda326 thank you so much
  • Yes, my chambers grew back fine but I was stuck wit the heart mumor & enlarqed heart. My doctor can still not fiqure out why I have an enlarqed heart.
  • @mimibrowneyez36 really? That is great! He never had any difficulties growing up?
  • @cgm1113 well I have a theory I got steroids shots while pregnant because I went into preterm labor at 28 weeks and was going to get induced due to preeclampsia. I think maybe the steroids shots and all the blood pressure problems may have had something to do with it
  • He has to take a blood pressure medicine because of it but thats it!
  • @mimibrowneyez36 thank you I have blood pressure problems too. I take labethol 3x a day
  • Yu Can Just Wait & Ask The Doctor That, I Mean I Can't Say Don't Worry Bout It, Cuz This Is Somethinq Serious. Or Yu Can Call Another Doctor For More Opinions & See Watt They Say !
  • @cgm1113 thanks girl good luck on your bby
  • I will keep your son in my prayers! I'm a RN...I don't want to scare u hun but it sounds like congestive heart failure. In newborns/small children its caused from a murmur (like cgm1113) or the major vessels of the heart are switched up...in other words, the heart can't supply enough blood supply to the rest of the body, causing the heart to work extra hard. The heart is a muscle, and when u overwork a muscle it gets bigger. Treatment for CHF is surgery to correct the murmur / connect the vessels the way they should be. There is one type of murmur in newborns though that usually "closes" with time, called Patent ductus arteriosus...its a vessel between the aorta (largest blood vessel of the heart) and pulmonary artery (artery that goes to the lungs) that didn't close all the way. You may notice he gets really wore out with feedings, lips turn blue, and sleeps more than usual. More frequent feedings can help ;) sorry this is so long, I just wanted to explain it to you well if that's what's happening with your lil man. Good luck!!!
  • The heart is done forming in utero around 50 days of pregnancy. You having high blood pressure didn't give your son a large heart. It wasn't anything you did. Babies often have heart murmurs after birth, but they usually self resolve. If your son had a type that should have closed but didn't, he may have problems with oxygenation because blood mixes in his heart. I'd say go to the cardiologist and have an echo. It's scary. My son had a murmur at 2 years old and I freaked out, but not knowing what is going on is the hardest part. Look into atrial septal defects and ventricular septal defects. They're the reason for an enlarged heart a lot of the times...hope that gives you some direction. Good luck. :)
  • @spray85 I read about a case were a same age baby was in heart failure but he had to breaThe with a nebulizer. My son uses a nebulizer often. I hope that it is not that but how will frequent feeding help? What can I do since I don't have the appointment until 3 weeks
  • @RTmommy thank you I need all the help I can get
  • Im from that area... let me just say to SKIP THE LOCAL HOSPITALS! go straight to Texas Childrens! I've had issues with ivs, spinal taps and catheters and ended up in tx childrens anyway... my son has a heart murmur and went to tx childrens cardiology.. WONDERFUL ATMOSPHERE. im having this baby at st lukes so I can be seconds away from tx childrens nicu should I need them. Clear lake regional is great, I actually had 3 of my kids there, but they cant measure up to tx childrens!
  • Is it your pediatrician that called you?
  • @sissylala well I have the appt at Texas childrens but in Webster tx the one on fannin doesn't have any openings with the Cardiologist till mid September and you are from what area? Cypress or la porte? Do you think my son could have a heart murmur? You see that often. John (my husband) says I should chill out but im so worried! I have heard clear lake regional is great too.
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  • OMG :( <3 be strong mama, I have never heard of anything like this but its definately scary as hell! I pray everything will be okay!
  • My 6 1/2 year old son was born with a congential heart defect (CHD). He was diagnosed with AV Canal (antrioventricular canal) when I was about 26 weeks pregnant with him. The OB did a fetal echocardiogram on me because I have type 1 diabetes and heart defects are more common in diabetic mothers. Hearing that his heart wasn't perfect was one of the hardest days of our lives. AV Canal means there is a hole in the heart that makes the 4 chambers of the heart common to each other so the oxygenated and nonoxygenated blood mix together. It causes problems throughout the body especially the lungs because the heart has to work that much harder. It will also cause an enlarged heart because it is working so much harder. The blue lips and difficulty sleeping, eating and gaining weight are sign of a CHD. My son had open heart surgery when he was 8 months old to correct his heart defect and has done really well ever since! He saw the pediatric cardiologist last week and they said his heart looks great and that his repair was one of the best he has ever seen. My son has gone through alot in his 6 1/2 years but he is the happiest, sweetest and most curious little boys I have ever met!

    Just try to keep your eye on him and look for any signs that he may be in distress and see the cardiologist. I hope that it is nothing and that he will be fine! Good luck!
  • I live in cypress/ katy (Barker cypress and w little york) but im from dickinson. I have family in laporte and im all to familiar with that whole area, from galveston to houston... im not sure if its a murmer, but I would think if it was that big of an issue they would've sent you to the hospital right away... I would just take your baby to the tx childrens er if you are that concerned. Listen to your gut. Rather go for nothing then wait for something bad to happen...
  • More frequent smaller feedings wont tire him out as much as longer large feedings. If you notice him getting tired and can see his ribs when he breaths, give him a lil break. Try to watch his activity level and use the nebulizer like they tell ya too. Its hard to say since they haven't concluded what's causing his problems. Its scary but stay strong :) Cardiology has come a long way in pediatrics and there's more treatment options now ;) Does the cardiologist your seeing have a nurse call line? Follow ur gut instinct and take him to a children's ER if u suspect anything.
  • @sissylala thanks. It's just that this is my husband and my first baby and I'm freaking out. I'm going to go to tx children tomorrow to see what they can do bc I do have a huge gut feeling that they are not doing everything they can and treating this situation very calmly. And I lived on 290 and hwy 6. But then I moved to Pasadena. And then met my husband got married and moved to la porte. His whole family lived there. I miss cypress though I went to cyfalls hs. I wanted to move back when we had our baby but he works in the refinery so we had to stay on this side. How is your baby that had the heart murmur?
  • @sissylala thanks. It's just that this is my husband and my first baby and I'm freaking out. I'm going to go to tx children tomorrow to see what they can do bc I do have a huge gut feeling that they are not doing everything they can and treating this situation very calmly. And I lived on 290 and hwy 6. But then I moved to Pasadena. And then met my husband got married and moved to la porte. His whole family lived there. I miss cypress though I went to cyfalls hs. I wanted to move back when we had our baby but he works in the refinery so we had to stay on this side. How is your baby that had the heart murmur?
    @spray85 not that I know of I should look into it
    @Juliek77 he does have those symptoms he is 23 lbs 26.4 inches long at 4 months old
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