Thursday, February 14, 2008

Happy Valentine's/CHD Awareness Day!

Today is not only Valentine's day, but it's also CHD (Congenital Heart Defects) Awareness Day.

Congenital heart defects are the most common birth defect, affecting one in every hundred babies born. It is also the number one cause of birth defect related deaths in the first year of life. Nearly twice as many children die from congenital heart disease in the U.S. every year than all forms of childhood cancers combined. But unless you've dealt with it yourself, you probably didn't know that. In fact, I've taken care of my daughter who was born with CHD for 19 years and didn't even know that until recently! Wouldn't it be my family's luck to have both a child with complex CHD and a nephew with childhood brain cancer.

Jessica's story is so complex and long that I've never sat down and written it all out. If you want her whole story you probably could go to the hospital and check out all 5 volumes of her chart, LOL. I've written bits and pieces of it here and there. You can check this blog by clicking on "Jessica" in the label cloud - that way anything that I've written that I've labeled "Jessica" will show up. You can also go to JENSENLAND and click on "Jessica's journey with CHD" to read a synopsis of her life up until 2001. Below I'm going to write about the beginning of her life and how we discovered that she had CHD - and how she almost didn't make it due to the medical community's inability to recognize that Jessica was in congestive heart failure - and our lack of knowledge about CHD and it's signs and symptoms.

Miss Jessica Jensen was born on June 3rd, 1988. She came quickly and they had to grab a doctor out of the hallway to catch her as she was born. What a little stinker - so anxious to get here and she had to do things her own way! Not necessarily the easy way - but HER way none the less! So would be the pattern throughout the rest of her life. (hehe... ) The doctor told us that she had a heart murmur but she should be fine. She was sent home with us the next day and we must have been told 100 times to not worry about her heart murmur. It was most likely just the ductus that hadn't closed yet and to take her home - just be sure to take her to her 2 week check up. Jessica was also born with polydactyly - two extra fingers and one extra toe. I had been born with the exact same extra fingers and toe (even on the same foot). Karl and I were so concerned about her extra fingers and toe that we didn't worry about the heart murmur - especially since everyone kept telling us it was NOTHING! During the next two weeks Jess was having feeding problems so I took her with me to a breastfeeding specialist. Of course said specialist watched Jess latch on and eat (which she only did for a few minutes) then she would pull her head back and catch her breath. I was told that she only needed more practice and showed me how to hold her differently. pah! Also during that time Jess looked quite yellow so we went to see the doctor - who was busy so a nurse practitioner saw us. She sent us to get blood drawn (which was normal) but not once did she mention a heart murmur! We talked about the polydactyly and who would perform the surgery, etc. After we got home and put her in her seat in the sun, my mom asked me if she "always breathes that fast"? I figured that the NP had just seen her and didn't say anything then she must be ok. Fast forward to the day before our 2 week appointment: Karl and I were apartment managers so we had the responsibility to clean the pool... while Karl was cleaning, a cap broke off and he inhaled chlorine gas! He came into the apartment coughing like crazy and called poison control. He was told to go and have a steamy shower to help his lungs. While he was in there I could hear him coughing so hard I thought he was going to die. I called poison control back and they said to go to the ER. We then spent the afternoon in the ER with our (now) good friend, the pulse-ox. They told us that Karl had pretty much burned out the inside of his lungs and could easily end up with pneumonia. They let us go home once his pulse-ox got up to 90%. Of course the doctor and nurses would come over and look at Jess and say, "Oh, how cute" (when they should have said, "Why is she so blue?!" That night was horrible. I was exhausted and scared, Karl tried to sleep in-between coughing fits, Justen (2 yrs old at that time) slept well and Miss Jess acted sooooo sick. She would latch on, suck really hard and fast for about 30 seconds and then yank her head back gasping for air. I thought that maybe she had to burp so I put her up to my shoulder and she would fall asleep. I would even try to wake her up to eat but she was too tired. 1/2 hour later she would wake up starving and she would repeat the cycle all over again. Little did I know that she was in CHF (congestive heart failure). The only reason I didn't drive her to the ER myself was that I kept reminding myself that she had her appointment with the doctor the very next day.

The next day I took her in and the first thing the pediatrician said was, "Is she always that blue?" I had no idea what "blue" was. She had always been that color that I could remember - besides, I had only had about 2 hours of sleep in the previous 2 days so I was a little off my game. The doctor left for awhile and then came back in and told me that I had an appointment for Jessica with a pediatric cardiologist in 2 hours and to NOT MISS IT! I went home and picked up Karl after dropping Justen off to stay at a friend's house. Poor Karl was still soooo sick and pale. We met Dr. Donnerstein and we started our road to being parents of a child with CHD. An echocardiogram was done and it seemed that one doctor after another was brought in to see it. Karl and I, both exhausted and worried, were told that they couldn't see any way that Jessica was getting blood to her lungs! He said that the ductus could still be open but they couldn't see it - and if it were to close then she would DIE. They needed to do a cardiac catheterization to see clearly what was going on and she would have surgery THAT VERY NIGHT - they couldn't wait until the next day. [Karl and I were in shock. It was all a bad dream! Wasn't it? I had never heard that babies could have heart problems!] Jessica came out of the cath at about 11pm and we were told to go home - she was too sick to for surgery and during the cath they found that she had grown some collaterals that were feeding blood to her lungs. She was admitted to the PICU and was in critical condition. Her lungs were full of fluid from CHF (congestive heart failure) and she was started on multiple heart meds. We were told that if we had waited even one day longer, she probably wouldn't have survived. The next several days we were told that they wanted to hold off surgery for just one or two more days - until she got stronger. The next week we were told to take her home! The heart medications were helping and she needed to get bigger and stronger so she would have a better outcome with surgery.

Jessica was diagnosed with Pulmonary Atresia, VSD (ventricular septal defect), Pulmonary Stenosis, Pulmonary Artery Stenosis, Overriding Aorta and Right ventricular hypertrophy (also known as Tetralogy of Fallot)

For months I didn't trust myself to know how to care for her. I missed the signs of CHF, what else would I miss? Would she die this time? To make things worse, she was very fragile and every little thing would set her over the edge... fighting for her life. Just to give you an idea how sick she was, she was hospitalized over 35 times in the first 2 years of her life. A few of these hospitalizations were for heart surgeries or procedures, but most were for respiratory infections or other illnesses. Her heart was struggling just to maintain life - she couldn't fight off a virus without help. She only weighed 10 lbs when she had her first surgery at the age of 5 months old. She started life at 6lbs 12oz. We jumped for joy for every ounce this little girl gained!

Now here we are.... almost 20 years later! Finally not worrying about trying to get her to gain weight - although I worry about her gaining too much weight now! LOL! We still deal with so much every single day, but she is sooooooo worth it!

The one thing I really want to stress is the lack of CHD screening. If the doctors had done an echo before sending Jessica home with me, we would have had a diagnosis right away. She never would have been in CHF for two weeks at home and I would have gotten the information about CHD before taking her home. I know that God has a special reason for keeping Miss Jess here but knowing that she almost died because of lack of screening makes me furious! There are other babies who do die because their CHD isn't found until too late. Other CHDs aren't even diagnosed until later in life and sometimes damage is done to the heart that makes it irreparable.

WE NEED BETTER SCREENING FOR OUR BABIES! I have to say that every niece and nephew that are born near me not only get lots of cuddles and smooches from me, but I watch their breathing, check the color of their cute little lips, tips of their noses and all their fingers and toes. MY CHD screening - free of charge. LOL!

The banner isn't showing up right and it's almost 3am - I'm going to have to fix it later. Until then - have a great CHD Awareness Day!

Of course I don't want to forget to honor all the angels who have not survived their CHDs. The most recent angel being Paige. We have known and loved so many children who have passed away to CHD... our hearts break for their families who are left behind and yet we still push ahead, hoping for more advancements in the medical field to help our children grow, laugh and love.


Awesome Mom said...

You are so right about more training in detection being needed. Evan's defect should have been glaring on the ultrasounds that they did. I am just so glad that we did not take him home like you were able to take Jess home. I can't imaging how horrifying it would have been to find out something is wrong in such a scary way.

Nicole Pereira said...

You have been tagged - check out my blog :D Have a great day!