I just ran across a great site allowing all of us “heart parents” to share our stories of our Heart Warriors and our lovely Heart Angels – I am blessed to be the mom to a 6 year old Heart Warrior, here is her story:
I met my husband 14 years ago and I felt an immediate connection. We had some struggles to go through, least of which was a messy divorce on his end. There was also a 16 year age difference (he is older). It really didn’t matter to me because I knew this was the man that I wanted to spend the rest of my life with. He had 3 children from his first marriage and had a vasectomy after his last son was born because he didn’t want any more kids (due to the state of the marriage that he was in). It didn’t really matter to me because I loved his children, but as time went by we decided that we would like to try and have a family of our own. So, in July of 2002 we headed down to Florida to have his vasectomy reversed by a doctor in Bradenton.
After receiving the results of the semen analysis we were disappointed, the odds of us having children were extremely slim. Well, we had given it our best shot and it just wasn’t meant to be. So we continued living our lives and were happy. In April of 2003 I was experiencing some stomach issues (have had them off an on my adult life). I had been to the doctor and he scheduled me to have an Upper Endoscopy done to see what was going on. As I was in the hospital being prepped they asked me if there was any chance I was pregnant. I said it was almost impossible but they insisted on a blood test. The doctor came in and told us that he was not going to be able to do the procedure because I was pregnant. You could have knocked us over with a feather! I got tears in my eyes and my husband an I were beyond thrilled. Of course we told our entire family and began looking for a house (we had just leased an apartment but they were willing to break our lease).
We found a house and my pregnancy was fairly uneventful until I was about 5 months along. High blood pressure led to Preclampsia so I was put on bedrest at home. I also had to have pre-term labor stopped 3 times…not a good thing. By 32 weeks I had reached a point where I was hospitalized so I could be monitored. That was alright with me, I was swollen like a sausage but was enjoying every minute of my pregnancy. My baby girl (we found out) was due to be born around Valentine’s Day and even if I had to spend almost 2 months in the hospital that was ok as long as she was healthy. But, on January 3 the doctor had said that I now had toxemia and there was no more waiting. So they did an amnio to make sure her lungs were ok (which they were) and I was induced at 6 am on January 4, 2004 with a vaginal tablet. Not too much happened for awhile although I was having consistent contractions. At 9:30 am they decided that they were going to start Pitocin to try and jump start the labor (like it really needed it…didn’t I just say I was having consistent contractions about 3-4 minutes apart). Well, that sure was a lot of fun. The contractions were much harder and lasted longer and stayed about 3-4 minutes apart. I knew I had no choice because my body was making it impossible to carry this baby – my life and hers was at risk if we didn’t deliver soon. After being checked I was still only at 5 centimeters. Nothing to eat or drink and I was none too happy having to try and stay on my left side, I had been in that same position (for the most part) for over 9 days and was really ready to have the baby. When the doctor came and checked she saw that I was now at 6 centimeters dilated and was happy for some progress. This was roughly 6 at night and I was exhausted, was it too much to ask for me to have my baby please? But, it was not meant to be. They gave me some meds to help me try and get some sleep throughout the night and I was sad and scared – after being induced I really believed that I would have had a baby within 16 hours or so. But, 8 am the next day (that’s right, I said the next day – 26 hours after I was induced) my doctor decided to break my water. Once that happens they have 24 hours before they have to intervene. I thought the contractions were hard before! Try 1-2 minutes apart. After 26 hours I was ready for some relief so they gave me pain meds through my iv. To be honest, they didn’t TOUCH the pain but remember, I was now roughly 29 hours in and had been induced. I opted for an Epidural. It was wonderful because I could still feel the contractions but the intense pain was gone. Unfortunately, my Epidural ran out 3 times. And I was still only 6 centimeters dilated. The doctor checked me at 4 pm and said that she would be back at 9. If I hadn’t made significant progress at that point we would have to consider a c-section. Well, at 5 the epidural wore off and there was nothing they could do for me because of the possible c-section. So, I had contractions one on top of another for roughly 4 1/2 hours before my doctor finally showed up (I had my hubby in the hall watching for her). After a long, long labor (40 hours) my daughter was born by emergency c-section at 10:56 January 5 weighing in at 6lbs 9ozs and 19 1/2 inches long (not bad for 6 weeks early). We named her Grace Elizabeth and she was perfect. She was examined by a pediatrician (not her regular pediatrician) and he declared her healthy. She did not have her sucking reflex, had some jaundice, and her breathing wasn’t great, but all in all for a 6 week preemie she was doing ok.
When she was 3 days old she received a visit from her regular pediatrician who was on vacation when she was born. He did a quick exam and heard a heart murmur. These are extremely common in newborns. He said that he would like to have an echo done just to make sure that everything was ok (later he told me that he knew that something was wrong right away). The next week was a whirlwind of activity. I knew that when the doctor beat my hubby and baby back to the room something was wrong. He was sending us down to Children’s Hospital in Milwaukee and we needed to go immediately. I had to reach my Ob-gyn to get discharged (wasn’t due to go home for a few days) and the baby needed to be prepped for the trip. Down to Children’s we go to meet with the Cardiologist (who I love) and have another echo done. He just wanted to make sure they didn’t miss anything…and they didn’t. She had a Coarctation of the Aorta, an ASD, VSD, Bicuspid Aortic Valve, and PFO. He was hoping that they could let her get bigger before they repaired the Coarc, but it was so severe that surgery was scheduled for the next morning.
She was only 4 days old when she had surgery and recovering from my c-section and watching my poor little peanut go through what she went through…hard to even think of. I don’t have any pictures because I didn’t want to take any. Especially when she was hooked up to so many machines after. But she is really doing well now, and people find it hard to believe that there is really anything wrong. She will need additional surgery at some point to fix her valve, and contact sports are out, but we are blessed with a vibrant, funny, loving little girl who is truly the light of our lives.
Thanks for reading and I hope you’ll come back to visit!
Here is some info about CHD’s:
- Congenital Heart Defects are the #1 birth defect. Source: March of Dimes
- Congenital Heart Defects are the #1 cause of birth defect related deaths. Source: March of Dimes
- About 1 out of every 100 babies are born each year with some type of Congenital Heart Defect. (approx. 40,000/year) Source: Children’s Heart Foundation
- Nearly twice as many children die from Congenital Heart Defects in the United States each year as from all forms of childhood cancers combined, yet funding for pediatric cancer research is five times higher than funding for CHD. Source: Children’s Heart Foundation
- The American Heart Association directs only $0.30 of every dollar donated toward research. The remainder goes toward administration, education and fundraising efforts. Of the $0.30 that goes toward research only $0.01 goes toward pediatric cardiology for CHD. Source: Children’s Heart Foundation
- This year approximately 4,000 babies will not live to see their first birthday because of Congenital Heart Defects. Source: Children’s Heart Foundation
- The cost for inpatient surgery to repair Congenital Heart Defects exceeds $2.2 billion a year. Source: Children’s Heart Foundation
- Of every dollar the government spends on medical funding only a fraction of a penny is directed toward Congenital Heart Defect research. Source: Children’s Heart Foundation
- Though research is ongoing, at least 35 defects have now been identified.
- 4-8% born with CHD have Hypoplastic Left Heart Syndrome
- 4-10% born with CHD have Atrioventricular Septal Defects
- 8-11% born with CHD have Coarctation of the Aorta
- 9-14% born with CHD have Tetralogy of Fallot
- 10-11% born with CHD have Transposition of the Great Arteries
- 14-16% born with CHD have Ventricular Septal Defects
- Although some babies will be diagnosed during gestation or at birth, sometimes the diagnosis is not made until days, weeks, months, or even years after. In some cases, CHD is not detected until adolescence or adulthood. Source: March of Dimes
- It is a proven fact that the earlier CHD is detected and treated, it is more likely the affected child will survive and have less long term health complications. Source: March of Dimes