Monday, February 18, 2008

The Start of Something New

Ahhhhhhh, to be young and in love.... remember how it felt to first fall in love and everything is new? I remember being young and falling in love with a special young man. This young man didn't have a job, he had come home from his mission early because he was very sick and he wasn't sure what he wanted to be when he grew up. But I saw beyond that. Waaaaay beyond that. ;) We prayed about getting married and our answer came back a resounding YES! So we did.

We did what we needed to do to secure jobs for both of us and we started our lives out together. We lived on love, hope and faith.... because heaven knows we had no money! hehehe... and here we are today... almost 23 years later... older, wiser, (heavier) and more in love now than way back then.

We have been through sooooo much over the years... having our first child when we had been married barely 10 months didn't help us financially or emotionally, but there he was. He was our sweetie. Our sweetie who is about to turn us into IN-LAWS! That's right. This post isn't about Karl and me, but about Justen and the love of his life, Ravyn. We found out today that they are engaged and planning a wedding in August.

So there's a picture of what it's like to be young and in love - and about to begin a whole new life together. I wish them well. I wish them peace. I wish I had a genie to pay for the wedding! hehe... but seriously, Ravyn is a sweetheart and I've never seen my son happier. (By the way, he has had a hair cut since that picture.) I'll have to get another picture of them soon.

I thought of Lady and the Tramp when I was thinking about what to write tonight. I love that scene when they are sharing the spaghetti... anyway, here is a little video that I found and it reminds me of Justen and Ravyn: The Start of Something New: Staring Lady and the Tramp

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.

Monday, February 04, 2008

'Til We Meet Again, President Hinckley

I am a little late in posting my little tribute to President Gordon B. Hinckley, but I really want to post it anyway. President Hinckley inspired people around the world and was loved by so many. Even though I never met him in person I feel like he was a close friend.

Good bye, President Hinckely, until we meet again.

Update/prayers for my nephew & latest on Jess

It's 5:30 am and I just got Miss Jess back to bed... again! She's not feeling very well and not sleeping well either. I've been sick most of the week and haven't gotten hardly anything done. I had high hopes of being able to accomplish something today - like taking down Christmas decorations! - but I think I will be sleeping as much as I can instead. *sigh* Since I'm up I figured I would go ahead and ask for some information and prayers for my nephew.

For those of you who don't know about my nephew, here's a quick background: Oct of 2006 at the age of 15, my nephew, Marcus, was diagnosed with anaplastic astrocytoma. The very next day he had surgery to remove it. He has gone through radiation and chemo and finished the maintenance chemo in Oct of 2007. Now he is supposed to have MRI's ever couple of months. Marcus started having a lot of pain in his legs and they have been giving out on him so they did an MRI ahead of time to see if the astrocytoma has spread to his spine and it came out clear. *big sigh of relief* although we still have no idea what could be causing the pain and sudden weakness in his legs. But wait.... there's more:

Here's what my sister wrote on Marcus's carepage:
"I know that was a big relief, Marcus's last MRI, and all is good in that department. But... we got a call the next day from the doctor that we saw that day. She said that she decided to look back at his last MRI reports and found something that she didn't know if we had been told about. She told John (the dad) that there was a "thickening" on the meninges caused by the radiation, but it was benign. I called her back this last week to clarify a little more. She said it was "meningioma" which to me and the research I have done, is another tumor that is mostly benign, but some can malignant. She didn't use the word tumor, but sounded pretty sure it was meningioma caused by radiation and that it has been on his scans since AUGUST. She said that if it gets bigger that they would send it to Neuro-Surgery and they would discuss surgery to remove it. To me that sounds like a tumor. Marcus's Dr. has been out on Personal leave so things have not been very well managed, in my opinion. So we are trying to decide as to what to do. We are looking at a second opinion at National Children's Hospital in D.C., plus we are looking at another Neuro-radiologist to read his scans again. With the advice of another Doctor, she thinks that having meningioma this early after treatment is almost rare-to-none. Anyway, sorry for rambling, but I just wanted you all to know what we are thinking about doing, and if you could keep us in your thoughts and prayers that we make the right decision. It would be deeply appreciated.
Thanks so much,

If any of you have any experience with brain tumors or radiation/chemo complications, please email me or leave a message here. You all are such an awesome resource of information and support! We appreciate any prayers or well wishes too. Marcus's carepage name is MarcusRussell or click on and then enter his name (no spaces).

Here's something that my sister didn't put on Marcus's carepage so shhhhh, I'm letting you all in on a big secret: The Make A Wish foundation came to visit Marcus and they are working on a wish for him! It may involve fighter planes or going on a trip... OK, that's enough info until Karen announces it on the carepage (or her blog). But like I said... it's a SECRET! ;-)

Last but of course, not least: We got the results from Jessica's last holter monitor. She is still having around 10,000 PVCs a day but seems to be having more symptoms OFF the medication so for now we are leaving her on it. I figured out that she was having tummy aches from taking the Procanbid right when she got up along with her Carafate so I have held the Procanbid until after she eats along with her other "morning" meds - which has to be an hour after taking the carafate. Unfortunately, sometimes I am slow to get her meds to her and so she has been taking the Procanbid more like 2 - 3 hours after waking up and the last few days she has been having more symptoms of her heart beating hard. It could be from the delay in giving her the Procanbid which makes me sad to think it could be my fault. But Jess has been sickly all week so she could be having break-through symptoms. It's hard to tell... and with me feeling horrible all week and not getting much sleep at night it's been a miracle that I've been able to give her all her meds. Thank goodness I have a meds schedule on the inside of the cabinet.

OK... enough whinning. Time to go to bed, set my alarm to get up in a few hours so I can cancel an appointment for Jess with her psychologist for this afternoon since it's supposed to be rainy, cold, windy and I just can't take Jess out in that type of weather. Besides, we haven't had any sleep. Then hopefully Jessica's aid will come and I can have a looooooong nap. Did I mention that as soon as we started feeling sick last week Jessica's aid got quite sick and was out all week? Fortunately we only went 2 days without an aid and an old friend/aid was able to fill in for the weekend. Otherwise I'd be in a padded room for sure! I hope our regular aid is feeling better. She's a single mom and it's gotta be hard going at it alone! Besides, Jess misses her. awww... Well, I can hear the wind starting up already and soon Karl and the boys will be getting up and going for their day.... Hopefully the next post will contain pictures that I keep promising you!

Saturday, February 02, 2008

Sweet Paige

It is with a very heavy heart that I write this post. Miss Paige became an angel yesterday afternoon. She seemed to be making tiny improvements but her body just could not handle all the ailments anymore. I knew it would probably come to this but I am shocked just the same.

As I mentioned before, I met Paige's mom, Jenn, in person. I shared a room with her and Cathy for a few days in KS at a CHD quilt show. It is amazing to me how much I have come to love my CHD friends that I've met online and it's amazing to meet them in person. We are like a family - or a club - an elite club that nobody wants to be a member of..... but once you are in that club you find a whole community of people who KNOW. They know what it is like to watch your baby breathe, wondering if each breath will be her last. They know what it is like to hand her over to a heart surgeon, wondering if you will ever see her again. They know what it is to live in the hospital dealing with many tubes, wires, medications and then to take her home only to worry more because you don't have the monitors, nurses and doctors right there to help you care for her. And then they know the fear of every parent - the fear that their child could die... only ours do die from their heart defects. I can not even count all the children that I've "known" who have died from their CHD. It is hard to know a child and then watch them slip away. It's hard to see their parents grieve. It's hard to know that yours might be next.

I want to cry, scream, kick and throw a temper tantrum that it's NOT FAIR! Paige fought so hard and her family was so diligent in caring for her. Her mom, Jenn, is my hero - she gave everything to be by her daughter's side for so long and so far away from home. And now she has to go home without her baby. My heart is broken for her.

Paige, sweetie, you will be missed soooooooo much. I know there was a reason you were born and that your life was so short. You have touched so many lives and fought the good fight. Now you are safely in your Savior's arms. Here is a song that makes me smile - it actually makes me cry thinking of how awesome it will be to meet Him after this life is over.

Paige, you returned with honor. I can just imagine you dancing at His feet.