Millie's Story

Our daughter Milaina (Millie) was born November 20, 2006. Her pediatricianhad sent us to the cardiologist because of the heart murmur he heard at birth and at her 1 week check-up that we were told was fairly common in small babies (she was just over 6 pounds at birth). At 8 days old, we took Millie to see a pediatric cardiologist. As soon as we were bumped up to the next in line for her echo at the cardiologist, I knew something was terribly wrong. The echo took nearly an hour and I tried hard to keep from sobbing out loud during that time. Millie was diagnosed with Tetralogy of Fallot.

We took Millie home and went back weekly to have her oxygen levels checked. At just under 7 weeks, Millie's stats dropped dramatically and her surgery was schedule for the following week. Though we were not expecting it so soon, Millie had her her full repair when she was just seven weeks old. She was in and out of the hospital in a week. She recovered wonderfully and has been on the move constantly since then (she started walking before she was 10 months old). Millie has also had a heart cath to try and help increase the flow in her pulmonary valve.

We were recently at her 6 month check-up and although Millie will most likely need another surgery at some point in her life to replace her pulmonary valve, we were told she didn't need to come back again for a whole year! I had to ask the cardiologist if he was sure?! Although it is a blessing, it is still a little scary.

As with many of the heart kids I have met and read about, Millie has always been described as being strong-willed and having a magnetic personality. Being a special education teacher, I have met other children who have had medical issues and I truly believe that some of their personality is developed based on what they have gone through at such an early age. Someone recently described Millie as "mighty" and that really fit for me. She is my mighty strong, mighty persistent, mighty smart and mighty beautiful 3 year-old.

 

 

Julia's Story

We were overwhelmed with excitement to be expecting our first child. The pregnancy was going perfect. We had a routine ultrasound done at 20 weeks. The baby looked great, but they had trouble getting all the necessary pictures of the heart. With nothing to be alarmed about we had an additional ultrasound at 28 weeks. At that time it was discovered then that our baby’s heart is on the opposite side and backwards, a condition known as dextrocardia. This is when we were introduced a Pediatric Cardiologist at Children’s Hospital. We instantly knew our baby was in good hands. After further tests they discovered other problems that included a complex single atrium, heterotaxia or situs inversus of abdominal organs. My care was transferred to Abbott Northwestern Paritnal Clinic where they and Children’s Hospital and Heart Clinic did everything they could to prepare us and themselves for our baby’s arrival.

Julia was born full term and taken immediately to Children’s Hospital where they ran the necessary tests. During the next week in the NICU the doctors and nurses educated us on how to care for a child with heart disease. Julia was discharged to come home and grow stronger for the surgery that waited. Six weeks later Julia stopped eating and was having difficulty breathing. She was admitted back into Children’s Hospital with congestive heart failure. It was time for Julia's surgery. We were terrified.

Julia’s surgery went well. The next few weeks were tough. Julia’s weakened airway was making it impossible to extubate. She was having terrible blue spells that led to her having a tracheostomy. During that time it was decided due to Julia’s slow heart rate a pacemaker was necessary for her to live a good quality of life. Her internal pacemaker was implanted the day following the tracheostomy. While our small but strong willed baby fought through each procedure, they discovered that Julia had a chyle leak in her chest cavity. Over the next month while monitoring the fluid output from her chest tubes, Julia underwent one surgical procedure and two chemical procedures to stop the leaks. After twelve weeks in the PICU she was strong enough to move up to Intermediate Care. Julia spent the next month making great strides with learning how to breath on her own and eat once again. Julia’s trach was removed and finally able to come home. One year after her open-heart surgery she was off all medications.

After spending 116 days at Children’s Hospital we experienced the outstanding care the doctors, nurses, anastisologist, respiratory therapists, etc. give to their patients. It is because of today’s innovations, technology, and the phenomenal care provided at Children’s Hospitals and Clinics that our Julia is an energetic two year-old. She loves swinging, bike riding, singing, and playing with her younger brother, Anthony

 

 

Hailee's Story

Hailee was born on February 14, 2007 via C-section at 36 weeks gestation. She is our first child and we were so excited to have her come into our life. She was a healthy 7lbs 1oz and 20 1/2 inches long. We went home after 3 days in the hospital and started our lives together. Every time I took Hailee in for her well-baby checks I had so many questions for the doctor; why does she sweat so bad when she nurses?, why is her breathing so rapid all the time?, why does she throw up everything she eats as soon as she's done eating?, why is she not gaining weight?, why does she cry like she's in distress all the time?. Every time I asked a question I got the same answer, "You're a first time mother and your just over reacting to normal things that babies can do".

After months of feeling I was being dismissed on all my concerns we switched doctors and went to a private clinic in town. Of course after being told so many times that I was overreacting I had myself convinced of this and did not mention any of my above concerns to the new doctor. On December 21, 2007 I noticed Hailee had a runny nose and a bit of a cough. Being it was her first Christmas I wanted to make sure she was healthy in time for the holidays. I took her in and they were doing their routine exam, I started to get nervous however when the Nurse Practitioner we were seeing said she needed to go get the Doctor "to listen" as well. The Doctor came in and listened and decided to send her off for a chest x-ray, they were thinking pneumonia. The x-ray came back and both her lungs were full of fluid, she was admitted into the hospital immediately. On December 24 after being there for 3 days Dr Parnell came in saying her chest x-rays weren't any better even with all the meds and nebulizer treatments. He knew it wasn't pneumonia anymore, he was thinking Heart problems. They did an EKG right away and determined it was in-fact a heart problem.

Hailee was taken by ambulance to the Children's Hospitals and Clinics of Minnesota. After numerous tests and 3 days at Children's we had a diagnosis (diagnoses to be exact): 1. Scimitar Syndrome 2. Partial Anomalous Pulmonary Venous Return 3. Pulmonary Hypertension 4. Atrial Septal Defect 5. Right Pulmonary Hypoplasia with Dysplastic hyperemic right sided airways 6. Dextrocardia. 7. Failure To Thrive. In layman's terms: 1. Extra collateral veins, shaped like Scimitar swords, that run from her heart into her right lung causing blood to pool in the lung. 2. Pulmonary veins hooked up in the "wrong" spot, blood is not getting out to the body like it should. 3. High pressures between the lungs and heart 4. "Hole" in the heart 5. Right lung is much smaller than normal and the "piping" in the lung is wrong or missing. 6. Heart is shifted to the right side of the chest. 7. Doesn't gain weight. Merry Christmas to us! All these diagnoses, what do you do with it all? In some ways I felt relief, but I was more angry with Hailee's old doctor. All the questions I had asked her, all the times she dismissed me and made me feel stupid, when all along I was right...there WAS something wrong with my baby!! I cried for days, I blamed myself for months, after all I was the one that "made" her.

Hailee's had Heart Caths for diagnostic purposes as well as putting coils in the extra veins running to her lung, CT scans, MRI's, and numerous other tests done in the few years we have known about her Heart/Pulmonary Defects. She has also had Open Heart Surgery in April 2008 and will be having a second OHS in Jan 2010 as the first surgery didn't hold. She is one of the strongest most stubborn little girls I know! I still have days that I cry and blame myself (even though we've been told her CHD is not genetic) but they are shorter and not as frequent. When people ask me how we deal with it all, I always have the same answer: "I wouldn't change her for the World, it has made her who she is today!"

 

 

Amelia's Story

We are Jenny and Jason and we are Mommy and Daddy to Amelia. I was 27weeks pregnant when I found out Amelia had Heart defects, we were devastated! Being first time Parents is scary in itself let alone to a baby with heart defects. They told us that she had a Complete AV Canal defect. We then decided to deliver her at Abbott so she could go straight to Children’s. I was induced on December 30th, 2008 and I had Amelia on December 31st, 2008 at 5:11am! She was 6lbs 8oz and was doing very well. After I had her they took her to the NICU and did an Echo. At that time they also found that she was dextracardic, she has bilateral SVCs, her ventricles are inverted, she is double outlet right ventricle and was also born without a spleen!, but she was doing great and there was enough mixing of the blood that the Doctor called my room that afternoon to tell us that she would be able to come home in a few days and they would wait on surgery till she got bigger! We were so excited to have her coming home with us! What a wonderful way to start the new year!

 

We had a nurse come out once a week to check her oxygen levels and weight. 2 weeks after being home on Jan.20th,2009 the nurse came to check little Amelia and her oxygen sats were at 60% while sleeping! When she woke up and got mad they dropped to 41%!! The nurse called the heart clinic and talked to Doctor who told us to get to the ER immediately! We took her in and they admitted her and scheduled her for the Norwood procedure on Jan.22nd, 2009. They told us it would be about 2-3 hours once started, she was in surgery for 6 hours!! They tried 2 different shunts and both were giving her too much blood flow so they ended up putting in a RV to PA Conduit. Finally she came out of the OR! They took her on and off bypass 3 times! It was so scary seeing her after surgery with all the tubes and wires all over her! We were in shock nothing could have prepared us as parents what we were about to face. But she was Amazing and she fought hard! She pulled through with flying colors and we came home 1 week after surgery! Once home we took care of her and just let her grow we seen the cardiologist every 3 weeks for a check up and still had a nurse come out once a week.

 

At the end of April Amelia had a upper Respitory Infection and she was in the hospital for 3 days until she could hold her sats up again, but after that cold she was having a hard time keeping them higher than 75% she was at 85% for a long time! We were hoping to get her closer to 6 mo. Before her next surgery but she was not settling for that so on May 18th,2009 she had her Glenn procedure. She was in surgery for another 6 hours! The Doctor came out and told us that she did not like to be operated on, but she did well! She had a little bit of a longer recovery time. She was in the PICU for 4 days and in IMC for 3 days they sent us home and we were back 2 days later! Amelia was very irritable and cranky and was not sleeping at all! So they re-admitted her for pain management. She was miserable. But she pulled through and we made it back home 3 days later!

 

She did very well for a long time, she had a few minor colds, but nothing too big. Until May of this year. Mothers Day weekend she was not feeling well. She had been fighting a double ear infection and a horrible cold! I had taken her in to the clinic the Tuesday before and they put her on antibiotics, by Friday I could tell she was not feeling any better. My daycare provider had called me and said that she was just not herself and that I might want to bring her in to the clinic again. I called the nurses line and talked to a nurse to see if there was any way we could get her in clinic instead of taking her to the ER, the nurse called my daycare provider on 3 way with me and when asked if Amelia was breathing ok, she said that she was grunting and breathing hard! The nurse immediately advised her to call 911. She called and I met my Husband and the Paramedics there. She was fine they said and allowed us to take her to the ER ourselves. Once there they said that her ear drums were on the verge of rupturing. They gave her a shot of antibiotics and told us that we would need to come back Sat. and Sun. for 2 more doses. We took her down there Sat. and got her 2nd dose. Sunday came and she was really out of it. She was just not herself at all. I laid her down for a nap in the morning and when she woke up I gave her some lunch. She started projectile vomiting all over, she then turned completely blue and her skin was very mottled. Then she turned ash white! She had not an ounce of color in her body! I immediately called 911 and they came and took her to Children’s. Once in the ambulance they did an EKG and she was in Supraventricular tachycardia! Her heart rate was 240bpm! When we got to Children’s they gave her a drug to reverse the SVT and it worked immediately. They admited her to the PICU for observation. We spent 2 days in the Hospital and started her on a new drug to help keep her out of SVT. She has been doing great since!

Amelia is now 17months old and weighs in at a whopping 24lbs! She is so full of life and energy! You would never know she has a heart defect just by looking at her. She is really starting to show her personality and attitude for that matter! But she is so much fun to watch and interact with. She still needs one more surgery for sure but hopefully we can hold off for at least another year, however I have learned that its Amelia’s rollercoaster she runs it were just along for the ride. She tells us when its time, and she always seems to defy the timeline we try to set.

 

 

 

 

Kalina's Story

Kalina Joy was born with a "Complete Atrioventricular Septal Defect", basically a large opening between the top two atriums and lower two ventricals and a cleft valve. The great news is that the lower opening healed itself, which was the more significant problem. The surgery consisted of a bovine patch for the hole (and another ASD they found during surgery) and a few stitches to help close her leaking valve. Kali had her open heart surgery on October 26th at the University of Minnesota Amplatz Childrens Hospital at eight months old. Everything went fantastic! Kali's mom Kamra had an ASD that was repaired when she was three years old; and lost her sister to VSD issues at the age of two. It’s amazing to see what can now be done to repair a child's heart!

 

 

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