New Member/New Parent

Hey....

I do not have a PM but my daughter (Lola) was born 6.5 weeks ago and was implanted with a pacemaker after six hours of life ...she has transposition of the great arteries and complete heart block..she was very unstable at birth and even had to have the crash cart used =0( .....I did know about her condition during my pregnancy (at 15 weeks) and as planned out as it all was there are still things I am learning.....Lola is still in the NICU ....she has had a tough time bottle feeding...something we were NEVER told would be or could be an issue during pregnancy (I wish I had known!!) ....During her stay in the NICU Lola has also contracted a Staph infection on the pocket of her pacemaker (located on her abdomen) ....It is doing well and we are crossing everything we have in hopes they do not have to replace the pacemaker itself .....Lola herself has astonished everyone and with the exception of the bottling is moving and grooving and growing!!! Developing normally and happy...She is my hero...and the toughest cookie I have ever met! =0)

I guess all in all I am glad I have found this site and have spent the last hour reading through it before joining....If anyone has had a similar situation or has any advice we would love to hear it!!....Advice on bottling and tube feeding or even survivng the NICU ...just knowing there are other parents out there is wonderfully comforting!!

thanks
Natalie

10 Comments

Add my prayers too!

by Gonnie - 2009-01-11 07:01:07

She is a tough little cookie! I'm constantly amazed at what modern medicine is capable of! I'll keep you & your family in my prayers and do keep posting so we can keep up on her progress!

lots of prayers

by Tracey_E - 2009-01-11 07:01:43

I don't have any advice whatsoever but I wish you the best of luck. It sounds like your little girl is quite the fighter!

Thoughts and prayers

by lb151 - 2009-01-11 08:01:16

I,also,will add her and you to the prayer list. I know how hard it is to watch your child be ill. Stay strong and well so you can be there for her.

You are not alone!

by Tammy - 2009-01-11 10:01:39

Hi, my daughter was diagnosed 26 wks. gestation with 3rd degree heartblock also. She was delivered at 36 wks. and had her pacemaker implanted just hours after birth. There is a group of other moms just like us that have been through this same thing also. Several of them had feeding issues also, though my daughter was lucky enough to escape them. Some have also battled the infection that you mentioned. They would love to answer all your questions. Just go to the yahoo health groups and go to "heartblockkids" . They have answered any and all my questions about living with my daughter's pacer. They are all a great group of women.

Hope you find it,

Tammy

CHEERY NEWS

by pete - 2009-01-12 02:01:23

I think your daughter should be in the record books. Previously I heard of a baby 15 hour old having a pacemaker which was supposed to be a world record. 10 out of 10 for the doctors. And a medal for your little hero. Babies have an enormous grip on life and you now have every reason to be optomistic. This is a story which touches all our hearts . Please keep us posted about how she is getting along as I know we will all be thinking of her. Thanks for the post and bless you both. Cheers Peter

I Know what your going through

by OLIVIAROSE46 - 2009-01-12 02:01:53

Hi, your little lola sounds like a miracle, I too have a baby daughter (Olivia) who has complete heart block which was diagnosed when I was pregnant with her, we were completely devastated as didn't know anything about it and it all sounded so scary the talk of heart block and pacemakers, the rest of my pregnanacy was a blur really, she was born and had her pacemaker when she was 5 days old. Everyday was so hard and even more so after just having a baby and your emotions are everywhere anyway, but if someone could of told me or shown me how she is today I wouldn't of believed it at the time, but she is now 7 months and such a happy and strong baby, we completely forget she has the pm and she doesn't seemed bothered by it at all, I think it effects me more than her. This site helped me to focus on the fact she has something that pretty much is cured as such with a pm and enables them to live a pretty normal life. I know its hard to imagine at the moment as they are so tiny and helpless but I'm sure she will just keep on going from strength to strength and you too will be here 7 months later saying the same thing. I will be thinking of you, stay strong and focus on the positives as these little girls are fighters!
All the best
Launa

Prayers

by bini - 2009-01-12 06:01:02

What a tough little cookie! I will make sure to keep Lola in my thoughts and prayers!

Christine
PS: Welcome to this wonderful site!

Prayers for your Precious Babe

by auntiesamm - 2009-01-12 12:01:09

Hi Natalie, My heart aches for you and what you and your little Lola are going through. It is amazing what medical science and technology can do for these babies. You and your daughter will absolutely be on my prayer list and be prayed for everyday. Yesterday, in church our pastor, Rick Warren, told us very specifically to keep a written prayer list and every a.m. before anything else, sit up and pray for everyone on the list. That is my resolution as of today. I hope you can feel the love of the wonderful people in this PM Club who will reach out and support you. I ask God to hold your little one in the palm of His hand and provide comfort and peace for you.

My thoughts

by third1 - 2009-01-21 02:01:17

I dont have much advice to give except to be nice to the staff and jokes are some times needed. I was born with TGA 22 (almost 23) years ago, and back then a pm wasn't used so i dont know how it goes, but i Hope lola the best of luck and you mommy cause i know she knows your there for her. If you have any questions that i can answer i would be glad to help. Keep strong for you and her and keep us posted on her status.

I really know how you feel

by japresler - 2009-02-22 12:02:51

4 years and 4 months ago my granddaughter Aletheia was born - her mom knew at 27 weeks that she would need a pacemaker too. The rest of the pregnancy was just like yours - filled with hope - and tears - and "what if's". Aletheia got her pacer at 4 days, and it was followed by a bout of heart failure 2 days later that was treated and arrested and has not progressed since then. She also developed an infection around her scar and almost had to have the surgery done over again. She also had severe eating problems - and was diagnosed with GERD and treated for it - the treatment really helped. She has almost outgrown it, but still needs a mild dose of Prevacid one time daily. The feeding problems were harder on my daughter that the heart problems.Aletheia is now in preschool. She is skinny compared to most of her friends but it is not due to a poor appetite. She is active, happy, developmentally ahead of herself and a joy to us all. When we took her to her first preschool class we all had tears in our eyes - the frail little baby that threw up for her first 3 months was walking into class, turned around and waved to her mommy and said, "you go home now mommy, I'm going to school."
My daughter is having her next child - and Aletheia is already getting ready to "help her with her pacemaker" if she needs one too. Heart problems are very hard on mommy's - and grandma's too - but the joy you will have as that child grows up will soothe the worries and anxieties - you can reach me at japresler@aol.com any time you want to "talk"

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Member Quotes

The experience of having a couple of lengths of wire fed into your heart muscle and an electronic 'box' tucked under the skin is not an insignificant event, but you will survive.