Thursday, February 9, 2012
Wednesday, February 8, 2012
Sunday, February 6, 2011
Faith and Hope....
Three years ago today, Morgan had her 4th open heart surgery. The last surgery in her palliative repair to her heart that would allow it to function as normally as possible. The days, weeks and months that followed that were so incredible difficult. It was the surgery we had waited for from the day of her birth. It mean so many things. It meant she had fought and survived and that she would be "fixed." Little did I know, that was not the path meant for our baby girl. Instead, that surgery mean lots of complications and a whole new path that we were totally unprepared for. For 30 days we sat in the ICU waiting for the "fontan fantasy" to come true. To see our little girl pink and full of energy and ready to take on the world. Instead, I learned a whole new way to live. She would leave the hospital and remain on a completely fat-free diet for six months. Trying to explain to her what that meant was just the start of the difficult task. Finding meals to help her NOT lose weight was the next phase. Finding a way to keep her skin from breaking down from the lack of fat in her diet was the next phase. And trying to keep a very brave phase knowing if I screwed up and she ate fat she very well could die was the worst part. Way to much stress for this Mommy to bear. Morgan did get pink....and for about 18 months we enjoyed the "healthy" little girl that we dreamed we would get at the end of the heartache of many surgeries and hospitalizations.
Around a year ago, we started to see this all become "undone." Her pinkness fades at times--using supplemental oxygen at home and school to give her body a break, she is back in heart failure--relying on diuretics to keep fluid away from her heart and lungs, and she lost the small amount of weight she gained after Fontan and continues to lose weight. We discovered that what we believed to be asthma for so long was really a progressive lung disease very similar to cystic fibrosis and requires it's own mountain of medicine to keep at bay. We discovered that her immune deficiency is quite comeplex and not only are her vaccination titers weak, but her body lacks the ability to make good IgA or IgB antibodies that combined with her lack of spleen, her immune system is much weaker than we originally thought. It has often left our doctors and ourselves scratching our head wondering what this means for Morgan's prognosis. In true Morgan fashion, she has never followed "the rules."
Her heart is considered "stable" and is actually the strongest of all her organ systems...so as scary as our journey was three years ago, it was well worth it!
If I have done anything to a fault it has been to research. I have contacted more doctor's and surgeons and scientists than I care to admit. I am always searching for the newest articles and studies done and will love the day I find another family JUST LIKE US. It hasn't happened yet, although I have met a couple of children that have anatomy very close to Morgan's. A couple of visits ago while sitting in an appointment with our immunologist, I asked, what about cord blood stem cells to stimulate her immune system. He contacted the Children's Hospital Oakland Research Institute and we began the planning to save Macy's cord blood for Morgan. We still are not sure if this will work, however, we have saved Macy's cord blood with HOPE that this may benefit Morgan. With cord blood HLA matching isn't as strict, however, since Macy was born we have learned that Morgan and Macy are considered a "good" match and 674 million cells have been harvested. They are currently being stored and Morgan's case is being researched at CHORI. When they have a plan that they feel will benefit us, they will contact us.
I guess what I find amazing about this is, nearly 8 years ago we started meeting with a team of doctor's at Children's Hospital Oakland and Stanford. They told us to have FAITH and we believed in them. Three years ago, when doctor's in Seattle told us there was nothing that could be done, we packed up our FAITH and headed back to Oakland. And sure enough....there was more to be done. And now, as we are facing a very new road with Morgan with little known research about Morgan's complex disease, we have sent our HOPE to Oakland, only this time to the Reasearch Institute.
With such rapid development in stem cell research it is really hard to say what all Macy's could do to save her sister. Morgan and Macy also have the same somewhat rare blood type of B+ while Braeden & Danica's are O+. It's amazing the way life turns out sometimes!
Today I have thought about everything I wanted to say today. Afterall, the "Fontan Fantasy" that we dreamed of didn't exactly go as planned for us. This has been way more complicated then we ever dreamed. There hasn't been a day that goes by in 8+ years that I am not searching and reading and learning about Morgan's complex anatomy. That is the time I would have spent in medical school and most days I have felt just as awkward as a Resident in the ICU. I do know this, having Morgan as a patient has been a complete joy and I'd rather write MOM after my name than MD any day!
So as I reflect back on these last three years or 1096 days, I have a choice to be sad that everything didn't go as planned or I can be thrilled that nothing went as planned and a little bit of HOPE was born and is snuggled in my arms while my little bit of FAITH is reminding me not to touch a sea otter cause they don't like their fur touched!
In preparing for this post I found a great quote....
When the world says, "Give up,"
Hope whispers, "Try it one more time."
~Author Unknown
As we start a new week, I ask you to open your minds and your hearts to the power of Hope and Faith...It's an amazing combination!
Morgan Faith and Macy Hope
Saturday, February 5, 2011
Tiny Dancers
So Friday was Morgan and Danica's first dance class. They are into seperate classes but both had THE best time and can't wait til next Friday and I believe they are going to try to invite the entire to world to their recital this spring!
Morgan really enjoyed playing indoor soccer in Seattle, but since then she hasn't really had much interest in doing anything "organized" but she is SO excited to be dancing! Even though she won't boogie down with us in the living room to Just Dance!
Danica is more than thrilled since all I have heard about since around her birthday last year was being a dancing! She has been wearing tutu's over her clothes for months and doing twirls and jumps around the living room. It's just a perfect fit!
Unfortunately, I was unable to go into the studio to watch. There is a pretty strict "no parents at practice" policy. It allows the girls to focus a little more and for the instructor to maximize their attention and time. So naturally I am SOOO excited for their recital!
So here ya go...this picture is as much as I have seen of their "skills" but I can tell you that their smiles were worth their weight in gold!
Wednesday, February 2, 2011
Happy February!
Well we are a month deep into 2011. It really doesn't seem possible. I hate how quickly time passes these days! It seems like I turn around twice and the days are gone!
It was a BUSY January but a fun one too!
Braeden and Morgan were both Students of the Month in December. So in January they were honored in a luncheon. Their school chooses a character trait each month and then a student is chosen from each class that best represents that character trait. It fills my heart that in the month of December, both of my kids were chosen for the character trait of Compassion. I believe that all of my kids display this so beautifully and I couldn't be more proud!
Danica has started writing her name....everywhere. And just yesterday she told me she knew how to spell a word. So I said "Let's hear it." Her sweet little voice said "NO...N-O." It took every fiber of my being not to crack up laughing! But I did it!!!!
Dan was home last weekend and we had a great Family Wii Day. We made brackets for a Wii bowling tourney (FYI if you can fit your family into brackets for tourney play you might have a large family) and without much effort Braeden smoked right through all of us. HOWEVER, the boxing champ in the family is Danica. She is the queen of knockouts with her hands like a butterfly!
Macy is growing and growing and growing. She has several fat rolls and loves cooing at everyone that talks to her. She does not lack personality and is already quite spoiled!
February brings lots of fun things...The girls will start dance in preparation for a big spring recital and Braeden starts basketball. Lots of running but lots of fun! And so begins the next round of seasonal check-ups for Morgan. She will see her team of doctors in the coming months. At the end of this week will be 3 years since her last open heart surgery. I have a blog entry in the works for that!
Today the kids and I were able to sneak a glimpse at the "Megaloads" that are on their way to Canada through Idaho. It is amazing to see them in person. I am in awe that something so massive can travel on our twisting and turning highway. Though the controversy has been high, they managed to roll into town early this morning and will leave tonight!
http://seattletimes.nwsource.com/html/localnews/2014102861_apusmegaloads3rdld.html
Be watching for pictures SOON! I've got fast breaks, tutu's and first smiles to capture soon!
Friday, January 21, 2011
.....And then there were four
So I spent some time telling you where Dan and I have been this past year, I suppose I should "re-introduce" the kids as well!
It's hard to believe that Braeden will be 11 this year and is finishing up his 5th grade year! He is such a great kid! I really could talk for hours about the goodness of his heart and the patience he shows with his sisters. Even as he enters into his "tween" years, his kindess and gentleness shine through. He is a great student, in spite of being a bit social and needing redirection to get his work done, he has been on the honor roll for 6 consecutive quarters, 5 of them being high honor roll! He is a great athlete, not only having great skills, but true love for the sports. He fills our calendar year with soccer, basketball, and baseball. He is almost as tall as I am and we are wearing the same size shoes! He is a fabulous protective big brother to his three sisters, I truly hope that they know how lucky they are--AND--that they choose great husbands that will also give "B" the brothers he always wanted.
The "Mighty" Mo is now 7 creeping up on 8. Everyday with Morgan is another gift....she is proof positive that when you think you can, you can. Her heart remains stable. The only complaint we have is that she has a moderate leak in her only valve so it doesn't pump as well as we hoped it would following the staged palliative repair. Therefore, fluid builds up around her heart and her heart rate remains elevated, and her oxygen sats remain low...meaning...she continues to live everyday in congestive heart failure. She also have struggled with some respiatory issue and after extensive testing, we found that Morgan has a lung disease similar to cystic fibrosis. In fact, she is being treated with cystic fibrosis drugs and is seen in a specialized CF clinic and is responding to them better than I expected! I am sure there will be posts on that in the future! For now this is just an update! She is a fabulous 2nd grader! She gets in gets her work done and doesn't mess around. She is very logical and seems to have really embraced the idea of "work harder and play harder." She is an animal expert and I fear that one day we will see her on an episode of "Animal Hoarders." She is also a very impressive artist, and can draw just about anything. Her belly laugh is so contagious and she laughs big and loud often!
And then there is our "Monster"....who really is anything BUT a monster. Danica is our 4 year old that is trying desperately to get us on a very good spirtual track. She has been attending a Christian pre-school and has reminded us all to pray before meals and to give thanks for everything. She played the role of a "Wise Keane" in her navity program as school. We figured it out she was one of the wisemen...who were KINGS...but she swore the role was meant for her cause she was a KEANE! She did it perfectly and delivered her gold to "Baby Genius" without a hitch. (yes, she called Him Baby Genius through most of the Christmas season)She is very witty and very wise beyond her years. She will hold you accountable and make you pee your pants with her jokes....She even have a Barbie named...Q...Barbie Q! Ahhhh I love that girl!
But now for the real introduction....Macy...also known as Macy Moo, is nearly 2 months old now and is an absolute joy! She is so very loved by "the bigs" and naturally having 2 sisters and a mom, is overly mothered. She doesn't seem to have a lot of real interests yet, however, watching the ceiling fan and on demand nursing are high at the top of her list! She came into the world a month early and at a teeny 5lbs. 4oz, but has climbed up to 8lbs in just 7 weeks time. She has reminded me to slow down and yet again, that healthy babies are true miracles in themselves!
So there you have it...I have updated you on the six of us....so now the tales can begin! I have missed sharing our family and can't wait to get into the swing again! I hope you all will enjoy it as much as I do!
Thursday, January 20, 2011
And the mask comes off....
I think we all can remember those defining moments in our lives. The good, the bad, the ugly…the moments in our own lives that live in infamy that are often so hidden from the world. Moments that change our lives so drastically and quickly it leaves those around us wondering what just happened—Hell sometimes it leaves us wondering what just happened. As this year comes to an end I feel like I have spent the last few years standing in front of a mirror wondering what the Hell happened to me and wondering who I was staring at….it wasn’t until I started to look at moments that I realized it was okay to admit to myself that sometimes life isn’t always easy or perfect, but there is always a lesson. And as soon as I started to open my heart and my mind to learn from the lesson, the fog began to lift and I recognized the woman in the mirror once again.
Nearly ten years ago I walked into a house in amazing Kaneohe, Hawaii in preparation for a fun night out with friends….I noticed a young man sitting on an end table across the room. I am pretty sure we were introduced but I don’t remember that moment. I remember however, standing in a line to get into a club finding it so very easy to chat with him. However, to this day, I can’t remember what we talked about! The night went on…I bought a beer for him….we chatted all night…and he wrote his number down for me on the back of an ATM receipt that I still have (he thinks that because it was payday and I saw his balance, I was hooked…..but really….my fellow Coastie Wife friends….do you think that was what hooked me?) I remember a really great kiss good-bye that evening…and then him not remembering my name. That’s right…not even kidding, he had NO clue what my name was. Luckily, I fell for his smooth line, when he asked how to “spell” my name so he could put it in his phone. That was the day I met Dan. It was fairy tale, like people claim that it is supposed to be!
Fast forward (not very much…we had a quickie military courtship) to the next defining moment….standing on a rock bluff overlooking the Pacific Ocean, knowing I had married that man I chatted with in line for the club. Looking at the ocean knowing it would tear us apart several times in our life together, but with God’s good grace also would bring us back together. I still look at those the pictures, us looking so small next to the ocean. Little did I know how ironic that would become in our lives. How small we really were…and how very big the seas would get and how very hard our ship would be hit. Looking back we were as young and naïve as we looked in the pictures!
Just about 8 months after we stood on that rock bluff….we sat in an a teeny tiny room…hearing that the baby girl inside my belly was very ill and that chances are we wouldn’t meet her…and if we did…our life with her would be incredibly short and very painful. I remember vividly us grabbing each other and asking each other for forgiveness….and then wiping our tears and vowing to not stop at anything to save her life. What also happened on that day is we replaced our wedding vows with a vow that no parent should have to make. Dan lost a big part of his wife that day. I openly admit NOW….8 years later…that I put so much energy into research , education, and preparation to even be able to take care of this baby that often our marriage was put to the back burner.
I can’t even put into words what life has been like since Morgan came to our lives…for as much heartache as there has been, there has been equally as many happy memories, incredible moments, and true miracles. We are truly better people for having her as our daughter. That is what you all want to hear…that is what we want to share. What we have shielded from the world is how very much this changed us. Today…for the first time in 8 years we talked about it. We talked about our pain. Our struggles. The things we have kept from the world-from our families, from our friends, but worse yet from each other. The worse pain came when Dan had to go to his ship and be on a constantly deploying schedule. Deployments are hard on every military family….however….I wasn’t prepared for what I would face in two years and how much of it would be alone. Morgan’s heart disease journey would take a path that we weren’t prepared for and sadly, we weren’t locked in that tiny room together holding each other. We were thousands of miles apart and I was making decisions on land and sending them via email to a warship in the middle of the ocean. Sometimes waiting for days for a reply or encouragement. Morgan ended up having 3 surgeries during that tour…two minor ones and a major open heart surgery that would change the path of her life forever and the path of our marriage forever. Watching Morgan fight so hard for her life…seeing the surgery not have an optimal outcome…and then learning that our daughter would forever be in heart failure and that she was not to be the “success” story that so many other kids like her changed us forever. Dan’s job requires him to serve our country , I knew that marrying him. That was one of the things I loved so much about him. His willingness to serve, his devotion to his job, his country, and his fellow sailors. However, it was that very same thing that I loved about him that would tear us apart.
During Morgan’s last open heart surgery, Dan had to go to meet the ship. Morgan was still in ICU. She was still fighting very hard. I was two states away from my other two kids, my extended family and a huge bulk of our support system…and duty called. Dan very painfully left California to meet his ship. That day, is a defining day. As sad as this is for me to admit…I quit. I focused everything I had on Morgan. On getting her home. On reuniting with the other kids. Making every day count. And learning how to accept this new life.
Dan and I grew so far apart. I stopped working on us. I stopped supporting him in his career. I became a stranger to him. Wearing a mask to the world. Pretending to be the happy family everyone expected me to be. Pretending to be grateful for a life that I was learning to resent. The only happiness I found was in my kids and even that was sometimes hard to find. I lost myself and any desire to find myself and worse yet to give of myself. With such a huge wedge between us, we did the unthinkable….we took separate roads. The kids and I moved to Idaho, he stayed in Seattle.
An entire year of twists and turns and life lessons would happen….and we struggled with this new life….however….one thing never changed. We never stopped working together for the kids. We always came together when the kids needed us. Once again, Morgan’s disease would take another turn. Her heart became weaker, her lungs are starting to harden from a lung disease bigger than her heart disease and her immunodeficiency disease progressed as well. We fought through another surgery together and began talking every single day…talking about us, about them, about ourselves. We learned so much about each other…we stood in line for that club again…trying to figure out who we were. He became my best friend again…..
My best friend that supported me through the hardest pregnancy I have ever had….yes…even harder than Morgan’s-. He texted me every. single. day. at 6:30 am to check on me. He never “missed” an appointment though most of them were in spirit. He drove over for an amnio that turned out to be a false alarm…and then 2 weeks later…he flew over for the actual procedure. He was there with me when I learned that Macy was a girl….and healthy. He put thousands of miles in the air and on the road trying to be here at least every other weekend through my 2nd and 3rd trimester. He spent hours on the phone, the internet, and in person listening to me cry, hearing my fears, reassuring my doubts and always encouraging me and reassuring me that he was always going to be here. He had no obligation to Macy...but he had incredible love for me that carried over to Macy.
He’s still here….loving me far more than I deserve…and ready to take on 2011…a new phase in our life…400 miles apart...
That’s just part of what is incredible about Dan….he gives you his word and he keeps it. He works harder than any man I have ever known and is truly one of the most selfless people I have ever met in my entire life. He gives far more than he takes and when he loves…he loves with all of him.
I guess the moral of the story is….the day we stood on the rock bluff we promised to live by 1st Corinthians 13 4-7…We truly believed in every single word that…
Love is patient, love is kind. It does not envy, it does not boast, it is not proud. It does not dishonor others, it is not self-seeking, it is not easily angered, it keeps no record of wrongs. Love does not delight in evil but rejoices with the truth. It always protects, always trusts, always hopes, always perseveres.
While we still believe that, I think what we have learned is that we have to put action to those words. And we have to choose “us” every time…and that it won’t always be pretty or easy….that we will be led away by tragedy and heartache but it is our choice to let tragedy and heartache define us or to let the goodness that our foundation was made of so many years ago define us.
Many of you know that Morgan’s middle name is Faith…it was chosen because that is truly what we were depending on. Our Faith to get her through our tough times and to help fight the disease(s) that would be so much bigger than all of us…
Macy’s middle name is Hope…Macy’s stem cells have been saved for Morgan to use in her battle with complex immunodeficiency disease and maybe as time goes on her battle with heart disease. Macy provides Hope for our Faith. Macy provides Hope that when all things seem impossible and dark, that nothing truly is impossible if you have enough strength to just keep going.
So in the darkest times in our lives these two little girls have changed us significantly….they have brought us back to 1st Corinthians…to verse 13…
And now these three remain: faith, hope and love. But the greatest of these is love.
We still have so much to learn…so many things to adjust too…and so many mountains to climb, but for the first time in a very long time, we are committed to doing it together and to never leaving the other behind and to face everything as it comes.
Our life is hardly perfect or flawless, but it’s ours….and it's worth fighting for!
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