Congenital Heart Defect Network - Designer Heart

All Blog Posts (62)

CHD Jewelry - Help Spread the Word!

Hi!

I came across this site today. I have a 2 year old daughter, Cassidy, who was born with Tetralogy of Fallot w/ PA & MAPCA’s.

I think this is a great way to get the word about about CHD’s and I commend you for what you’re doing.

My wife and I are also on a mission to spread the word about CHD’s. We just started a jewelry company called Lucky 10. All of our products are handmade and pertain t

… Continue

Added by Traci Lisa on March 1, 2010 at 5:05pm — No Comments

Hey =)

Hey everyone =)

My Name is Sarah, and i was born with truncus arteriosus-type 2 (with the conduit and VSD), VSD, and 2 murmurs,

I have had 3 big heart operations, one of them being an aortic valve replacment, so this means i am on a anti-coagulant for the rest of my life =/ At the minute im on one called inoheparin tinzaparin or heprin for short =)

But previously i have been on warafrin and phenidione (I think thats how there spelt =P) but they hav

… Continue

Added by Sarah Mckain on February 27, 2010 at 1:05pm — No Comments

Amniotic Test is Out

My amniotic test has shown that my baby is normal so at least we have passed one hurdle. It is another long wait for the next genetic scan on 6 Jan to see if there is any improvement on my baby's heart. What is most disheartening is that I did not have the support of my mum who seems to be pessimistic about the entire thing. Even my close friends and sisters are helping to pray for my baby. Let's just hope there is a sliver of chance for my baby to survive the ordeal and let me and Steve become… Continue

Added by Veron Poh on December 16, 2009 at 10:26pm — 1 Comment

What is Fallot Tetra?

My baby was diagnosed with Fallot Tetra when Steve and I went for the genetic scan on 16th week of pregnancy. The news totally shocked us for the following weeks to come. Immediately, I had to undergo amniotic test and now is the long wait for the results. We just don't know what to say to comfort each other now... next update on 10 Dec. Continue

Added by Veron Poh on December 3, 2009 at 4:15am — No Comments

Ryders story so far

Ryder was born on Sunday 12th April 2009 (Easter). On the 22nd of December 2008 Ryder was diagnosed with a congenital heart defect called Tetralogy of Fallot (TOF) at his 20 week ultrasound. We also have a facebook group (see link below) http://www.facebook.com/group.php?gid=54421280913&ref=ts This group is for us to share our story with family, friends and anyone who is interested. We also started this group to h… Continue

Added by Matthew Coscia on December 2, 2009 at 9:39pm — 1 Comment

Have faith and courage

Dear children and parents or relatives, I was born with Tetralogy of Fallot and had two surgeries. I was blessed by the magic hands of two surgeons. The first, Professor Filipozi in Brazil, saved my life with a Anastomosis surgery in 1958. The second, Professor Senning in Zurich,Switzerland, gave me my new life in 1967. I am now 58 years old and want to tell you all to be brave and have faith in the future. Live long with a loving heart. Continue

Added by Paulo Fabricio on November 12, 2009 at 11:58pm — No Comments

Needing some advice

Hi it's been awhile since the last time I was on here. After Eve's surgery back in August we focused on her studies. She was homeschooled for a while, but now she attends her 1st grade class regularly. While waiting for her sternum to heal completely, she was on a no activity order from the doctor til her next check up (Oct 27th). At her latest appointment we found out that her pulmonary valve is dialating. So instead of getting her no activity order lifted, it has been extended. Eve is really d… Continue

Added by The Myricks on November 3, 2009 at 1:37pm — No Comments

Been away for a bit!

It's been trying over the last few months to say the least. Amayah went through a risky BAS procedure and then got her G Tube put in. Soon after she started vomiting up yellow bile and after a 6 hour stay at Sick Kids emergency we found out that the tube was blocking the passage way between her stomach and intestine. They had to re-position the tube 9 days after it was put in and they did it with any sedatives so our baby was not very pleased. On a positive note she is putting on a nice bit of w… Continue

Added by The Lobos on October 14, 2009 at 5:24pm — No Comments

Damn you Ativan and Methadone!

We were sent back to the hospital on Wednesday for a loss of 5 grams. Once we got there it turned out that the cause could have been withdrawal from her two med's that we are trying to ween her off of. Has anyone have any experience with weening their child off of either of these med's? It has been a huge challenge to say the least. Also, we discussed with the doctors about a G-tube-- anyone have this put in yet? Allie is 2 months old, and will be going in for her Glenn Shunt at three months du… Continue

Added by venus wallis on September 12, 2009 at 1:52pm — 2 Comments

My Heart Story

My name is Nicole Vickery Borek, and I was born in May 1970 with a seriously defective heart. I was a "Blue Baby" (cyanotic) born with Tetrology of Fallot. At 7 days old, I had my first visit with the Cardiologist at the University of Alabama in Birmingham Medical Center (UAB), who would save my life multiple times. In the 1970’s, there were many innovative breakthroughs in open-heart surgery, especially for pediatrics. I had a Waterston shunt performed in 1971 as a way to allow blood flow &… Continue

Added by Nicole Vickery Borek on July 23, 2009 at 3:00pm — 3 Comments

Nathan Michael Catchpaw June 18, 2009 - June 25, 2009

This is difficult to write as we are announcing Nathan's birth and death. Nathan was born on Thursday, June 18th. We were at Mount Sinai for an appointment on June 17th and the doctor checked and I was 2 cm dialated already. Then he stripped some membranes but failed to tell me that he did that and that I could go into labour at any time. Shortly after leaving the the doctor's office, my water broke and we walked over to Mount Sinai Hospital. At first they did not believe that I was in labour be… Continue

Added by Cheryl Davis-Catchpaw on June 28, 2009 at 3:05pm — 1 Comment

Amayah Hope Lobo Update - June 23, 2009

Amayah seems to be having issues with her feedings. She stays unsettled for long periods of time once she has been given her milk. The doctors think it could be that her lungs are getting too much of the oxygenated blood from the shunts and not her stomach (Her stats stay in the 93% to 95% range at all times and she hit 100% today). They plan to start her on captopril tonight. They have given her some morphine to take off the edge from the continuous acid reflux. She hates it when the doctors an… Continue

Added by The Lobos on June 23, 2009 at 7:19pm — 3 Comments

Cassiana is here!!

Baby Cassiana was born on June 22 at 9:16 PM. She weighs 6 lbs 11 1/2 oz and is 19 1/2 inches long. Praise the Lord, she is doing well!! The team of doctors will do more exams and will decide near the end of the week what the plan of action will be for her. The hope is that she will have her first surgery early next week. Thank you for your thoughts and prayers! Blessings, ~Tina Continue

Added by Tina Ashcraft on June 23, 2009 at 6:40pm — 2 Comments

Amayah off the vent

Amayah came of her vent yesterday and today had her oxygen tent removed. She has started to breath on her own but has trouble once in a while. Her sats stay in the high eighties to nineties when they have her on 0.1 oxygen but drop if they take her off it. But they also don't want the sats that high... so it's all about tweaking the numbers for now. All other numbers for now are holding steading/normal. Our baby is growing so fast even in one week! She loves her Mother's milk and keeps it all do… Continue

Added by The Lobos on June 16, 2009 at 6:11pm — 3 Comments

Amayah Hope Lobo Born June 8th, 2009 @ 3:00 p.m.

We welcomed our baby girl into our lives on June 8th, 2009 at 3:00 p.m. Mom was a trooper and made it through a rather long labour. Baby Amayah came in at 7 pounds 10 ounces. The family is trying to get some rest as baby Amayah goes through her recovery period from the first of three open heart surgeries. Your prayers and good vibes are requested. The Lobo's Continue

Added by The Lobos on June 13, 2009 at 9:05pm — 4 Comments

35 weeks and 4 days Visit to Mount Sinai

We had our appointment at Mount Sinai yesterday. This time we met with Dr. Seaward and a pediatrician. Even though we met with two doctors and had an ultrasound we were out of there in 2 1/2 hours which is really good. First we met with the pediatrician who just explained that it is her team's job to make sure the baby is stabilized after birth before he is sent to Sick Kids where they will take over. It sounds as though we will not be able to hold the baby after he is born but we should be abl… Continue

Added by Cheryl Davis-Catchpaw on June 2, 2009 at 10:43pm — No Comments

34 Week Visit to McMaster

We had our appointment at McMaster this morning. We were informed that the baby now weighs almost 5 pounds which we are very happy about. He has also moved into the head down position so as long as he just stays in that position I can be happy about that. The doctor felt that the measurements and the ultrasound overall looked good. So we finally got some good news today anyway. We go back to Mt. Sinai on June 1st. I wanted to schedule a tour of the delivery area of the hospital on that same day… Continue

Added by Cheryl Davis-Catchpaw on May 22, 2009 at 11:30pm — 1 Comment

The Lobo's - We have a date!

I had my weekly check up at Mt. Sinai on Tuesday. It looks like baby is holding up fine, so far! Her head is where it should be, engagement is definitely visible. I spoke with Dr. Kingdom this time and he gave us an inducement date of June 7th, which is a day after my original due date. I was pretty relieved as I was anticipating the inducement to occur much earlier and kept worrying myself if baby would be strong enough by then. If baby decides to make an appearance before this time, both Mt.… Continue

Added by The Lobos on May 21, 2009 at 4:31pm — No Comments

Baby Ezra Mokotoff needs money for heart surgery

BOYNTON BEACH, FL -- A baby boy needs your help to afford open heart surgery. Two-month-old Ezra Mokotoff was diagnosed with a congenital heart defect and Downs Syndrome. Now Ezra needs heart surgery and his parents need financial help. His parents are trying to get the bills paid through the insurance company and with non-profit organizations. A hair cut and color fundraiser will be: Sunday, May 17th at Pyure Aveda Salon 1500 Gateway Boulevard Boynton Beach 9am-2pm 561-731-1866 http://www.wp… Continue

Added by The Lobos on May 17, 2009 at 2:17pm — 1 Comment

pre - op medical

Well today was the day that i had my pre op - medical at the Bristol Royal Infirmary where i will also be having my operation in two weeks time. It started of with a lot of questions asked about my previous operation and other operations that i had as a child as well as filling out a form for the anaesthetist. This was followed by a tour of the icicu which is a brand new facility which only opened this week so that i could get an idea of what to expect, must admit that it was both a bit scary an… Continue

Added by ian david webster on May 15, 2009 at 3:46pm — No Comments

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