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Introduce yourself here!!

Posted by on May. 4, 2007 at 5:59 PM
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Hi everyone, and welcome to the Heart Moms group here on Cafemom!!!

Take a minute to introduce yourself, and your chd child.

Let us know what chd they have, what surgeries they have had, what surgeries are coming up, and where you are located if you wish.

Also, let us know a little bit about you too!! Your hobbies, and things like that.

I'll go first.....
by on May. 4, 2007 at 5:59 PM
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Replies (1-10):
by Group Owner on May. 4, 2007 at 7:06 PM
My name is Nicole, and I am Khalil's mom. Khalil is almost 20 months old. Wow, I can't believe how time flies.....Anyway, he was born with Tetralogy of Fallot. We found out about his TOF when I was 24 weeks pregnant, and he has had 2 open heart surgeries and 2 caths.

His first open heart (BT Shunt) was when he was one week old (9.19.05) and his second (repair) was when he was just over 6 months old (3.16.06). Each of his caths were performed right before each surgery.

Today, he actually had a check up with the cardiologist, and all turned out okay, and we go back in 6 months for an echo.

And as for me, I've been married to Feres for 6 years and we are getting ready to move into a house at the end of this month! I am a stay at home mom, and am hoping to become a work at home mom soon.....

Okay, who's next!??
by New Member on May. 5, 2007 at 9:32 AM
Hi Everyone,

Great job, Nicole.

My name is Tanya and I have 2 daughters, Haley 7(HH) and Sophie 19 mths (Tricuspid Atresia, Interrupted Aortic Arch, VSD, ASD, )

She is a single ventricle with G-tube, Chronic lung disease (her left lung is said to have pulmonary hypertension at one time and she only gets 10% perfusion, last scan). She is on 5 meds still and this includes coumadin.
She has a scar on her right arm that is from her getting an infection in hospital and eating away her arm.

She's a very happy little girl and if I did not tell you her story, you would never know.

She has had the Hybrid Banding, Stent placed in PDA, Modified Norwood, Glenn & LPA reconstruction. She's had 3 OHS's. She's been in the cath lab 9 times. Last counted! She will have her follow up May 14 and sedated echo.

I look forward to meeting everyone and sharing our stories, concerns and everday life =)

Love & Light~
by Member on May. 5, 2007 at 5:03 PM
Hello!  I am Jen.  I have a hh daughter Sarah who will be 4 May 22nd...and Tommy is 14 Months, he has an ASD.  The hole takes up 3/4 of the wall that is supposed to be there, and has made his right atrium bigger than his left.  (did I get that right? I can't remember.   Well it is the side that is supposed to be smaller is now larger)

We are headed over to Tampa this Tuesday for pre-op and Wednesday is his ohs to close it.

Me - I work full time and go to school part time.  Hubby and I will be married 9 years May 23rd (together 11).  We live on the east coast of Florida!
by on May. 6, 2007 at 11:31 AM

Hi!  My name is Jessica and I'm the mother of 3 kids.  My oldest son, Jake (9), has Aortic Stenosis.  He has had 3 caths & 2 open hearts.  His last surgery was 01/2006.  He is doing great now, but we still have a long road ahead of us.  Looking to connect w/ other Heart Moms! 

by New Member on May. 6, 2007 at 2:02 PM
Hey name is Renee.  I do not have a child who has a chd.  BUT I am a big supporter of getting the word out about CHDs.  Nicole...the group owner, is my cousin and I have learned so much about chds and the trials and tribulations that go with them.  I think that anyone who has a child that has a chd is wonderful.  You are a strong group of women.  I can't wait to get to know you and your children. 
by Group Admin on May. 6, 2007 at 2:29 PM
Hi everyone!
My name is Koren I am the mom of 2 step mom of 1. My oldest dd is 9. My stepson is 4. My heart baby is Addison and he will be 2 on july 4th. He was born with ToF, but we didn't know until he was 4 months old. (His story is posted on my home page). It is great to meet everyone. I see a few BBC moms on here already.
Jen we will be keeping you and Tommy in our thoughts and prayers!
Hi Nicole thanks for starting this group!!
by Member on May. 6, 2007 at 4:11 PM
Let my start by saying I am sorry that this post is so long.  My name is Krista and I am mom to Angel Zachary and his twin brother Dylan.

My son, Zachary, got his wings on October 17, 2006 after putting up an amazing fight for 16 months.  He was born at 30 weeks with his twin brother.  I had been on bed rest at home for 3 weeks and then complete bed rest in the hospital for two and a half.  I had been to labor and delivery on 3 separate occasions and we were able to stop the labor, but on May 27, 2005 I was taken in for an emergency c-section because I was 8 centimeters dilated and my other son was standing on my cervix and his umbilical cord was right beside his foot and the doctor was afraid of a prolapsed cord.  We knew that Zachary had little chance of surviving, he was Hypoplastic Left Heart (HLHS), but felt that his twin had a chance so we needed to save him.  That was the first of many difficult decisions that I would have to make in the care of my sons. 
 Well, I delivered my sons at Brigham and Women's Hospital and Zach was immediately taken to Boston Children's Hospital.  He was doing amazingly well and the decision was made to attempt to do the Norwood procedure on him.  On day five of life he was the second smallest to ever have the surgery and the smallest to survive.  His doctors were amazed at how well he did and how quickly he recovered.  He spent 10 weeks in the hospital and was finally released on his due date.  We spent 3 weeks at home before we made our first medflight trip back to Children's because the shunt they had put in had totally clotted off and the blood was not going to where it should.  The only thing that was keeping him alive was the collaterals that he was building up.  He under went the Norwood a second time the following day.  He once again did well and amazed everyone including the doctors.  No one knows why he had survived the clotted off shunt. He then went on the have a total of 2 cardiac arrests, 2 medflights, 3 open-heart surgeries, 4 cardiac caths, and placement of a gj-tube to deal with his inability to handle food in his stomach (whatever entered his stomach was immediately vomited back). We spent the first year (except for a total of 5 weeks) at Children's.  We had discussed a transplant and then were told he would not need it.  It was a roller coaster ride that I wanted off of in the worst way.  I prayed daily if not hourly that my little Zach would come through this and would be a "normal" child like his twin.  I looked forward to the day that he too would sit up on his own, crawl, walk, talk, and follow along behind his brother ripping my house apart.   

We had been in to see his cardiologist on a Wednesday and although Zach was definitely sick he did not feel that he needed to be admitted to the hospital. He seemed to be holding his own, to this point.  He was not requiring oxygen and he seemed to be relatively comfortable, so we went home.  On Saturday he became increasingly fussy and when I checked his oxygen, it was low.  I placed him on the portable oxygen that we had at home and called his doctor.  I was instructed to bring him in.  When I left his oxygen level was 60 (normal was 75-85) and by the time I got to the hospital he had dropped to the low 40's.  He was brought into trauma and the fun began.  He was stuck 6 times before they could get an IV in and he was on 2 liters of oxygen through the nasal cannular and 1 liter on blowby.  We still could not get him into the 70's.  He was admitted to the cardiac floor and I thought that we were doing better.  On Monday morning he was rushed to the CICU because of his struggle to breath, and was intibated on Monday night.  On Tuesday his cardiologist came in and told us that he looked good and that we were just going to ride out the next few days on the vent and let him get over the virus.  I had a feeling that his was not true so Zach and I had a conversation and I told him it was ok to stop fighting. I indeed would be sad, but I would be ok.  He has fought a long hard fight and it was ok if he did not want to do it anymore. It was 15 minutes later that the crash cart was outside our door and they were using the paddles on him to try to get his heart back into a normal rhythm.  He was shocked 4 times as I stood beside his bed.  His cardiologist was with us and I made the decision that that was enough. He was getting one more chance and if it did not work that was Zach's way of saying he was done with his fight.    By the time I walked back into his room, the monitors were off and Zach was gone.  The vent was shut off and I was given my son to hold.  I could not believe that it was over, he was gone. 

by New Member on May. 17, 2007 at 3:16 AM
Before I begin, I want to say to Krista, that I am so sorry for your loss. What an amazing story you have told, and I am so touched.

My name is Rene. I am a SAHM and I have 4 boys. My youngest is Tommy. Tommy is now 7 months old and started life as a 33 weeker preemie. He was diagnosed at about 20 weeks with CHD, It is called Double Inlet Left Ventricle with Transposition of the Great Arteries and Pulmonary Stenosis. Basically, he has one ventricle instead of two, so all of his blood mixes together (oxygenated and unoxygenated) and is repumped through his body. The TGA doesn't affect him because all of his blood pumps to one spot anyway. The PA,however, did cause him problems. It narrowed to less than 2mm when he was a month old. He was still in the hospital, but only spent 5 days of that in the NICU. He then moved to special care, then to the peds cardiac floor. He had an emergency BT shunt at 4 weeks old. 5lbs, 4 oz...

He also has a swallowing defect called cricopharyngeal dysfunction. He is fed by G tube. Between the crico and preemie issues, he spent 5 weeks on the ventilator after heart surgery and ended up with a trach. From birth he was in the hospital for 79 days when we finally brought him home. That was in December. We have spent the last 5 months dealing with sensory issues, and developmental delays. At 7 1/2 months, (6 months corrected age) he has the motor and sensory skills of about a 2 or 3 month old. We are working with therapists. He sees OT once a week, and PT once a week. He has just learned head control, and can roll onto his right side (but not over).

We found out last month his sats had dropped from the mid 80's to the low  70's. He gets his first cath early June, then we are headed for the Glenn. More time in a hospital bed when he hasn't recovered from the first go around...

There isn't much to say about me. I am a SAHM and full time caregiver/nurse to Tommy. Trach babies cannot be left alone for a second because the trach can plug very quickly. I stay awake until 3 am every night to give Tommy Reglan. I home school my 8 year old because it's too hard to coordinate school and doctor's visits.

I am so PROUD to be a heart mommy. I am very big on awareness and online support. When I do get free time, I like to watch CSI reruns on Spike TV.
by Group Owner on May. 18, 2007 at 4:39 PM
Wow! We've got some really strong moms on here. I am so glad you all joined!

I hope we can learn from eachother's experiences and really get to know eachother!

Thanks for all the support too, Renee ;)

-Nicole, mommy to Khalil-9/12/05 TOF..2 caths, 2 open heart surgeries.
by New Member on Jun. 16, 2007 at 9:14 AM
Hi everyone, my name is Melissa.
I am new to this group and I am so thankful there is a group for this on Cafemom.

I have a little one who was born on 03.31.2007 named Lilybeth Hope.  We knew about her CHD's at 20 weeks of pregnancy.  She has a single ventricle and transposition of the greater arteries.  She had a BT shunt at six days old, she will have the Glenn operation at 6 months old, and she will have the Fontane done at 2-3 years of age. 

Lily and I reside in New York with my husband, her daddy, William.  I could not have asked for a better man to share this journey with - he has been amazing from the beginning!

Right now we are in the process of moving 40 minutes NW from where we are now (check my journals for pictures).  We are so, very excited to enjoy ourselves in our little cottage.

I am currently a SAHM and I take online classes.  I could not imagine leaving my little one with anyone else (except family members), especially with her CHD.  I love music and writing and now I am trying to get into photography and sewing/quilting. 

It's nice to meet you all and I look forward to chatting with you more!
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