Hypoplastic Left Heart Syndrome

Throughout these blogs you will see me refer to Scarlets congenital heart defect as HLHS. This stands for Hypoplastic Left Heart Syndrome, a child with this defect only has the right side of their heart. When Scarlet was born we were under the impression shed go through the standard three surgeries...At just 3 days old she underwent a procedure that showed her coronary arteries were not what they should be and IF the surgeries were successful she could have a heart attack at any point in time... which left us with Heart Transplant. At a week old she had a pulmonary Artery Banding to help preserve her life during the wait.. She also had a balloon septostomy at 2 1/2 months to help.. we almost lost her 4 times, and after waiting 3 1/2 months she got her second chance at life. September 26,2011 an angel entered our daughter and saved her life. Our daughters life will be treasured no matter the length of time she may grant us, though we hope for a entire lifetime. "Enjoy life today, yesterday is gone, and tomorrow may never come." If you'd like to know more about Scarlets condition please feel free to read more of the upcoming blogs.

Thursday, September 29, 2011

Life has just begun...our Miracle girl.

As you all know just a week ago Scarlet was in a tight spot, not sure if she was even elligible for a heart transplant. She was on the verge of literal organ failure and eventually death, we were asked to write a plan of how wed want her passing to go and although we tried to stay realistic of the possibility we just couldnt give up. Without writing the plan we continued our daily and nightly visits, praying earnestly and placing all faith in the Lord that he could heal our angel. The week she was very sick we decided to have one of her primaries take her footprints so we could have them and I eventually wanted to get them tattooed. During the process of getting her footprints her nurse Lorene shared from past experience how very sick babies would get footprints at the scariest point in time of their little lives and would then miraculously get better. Thinking it was a touching story it gave us more hope that just maybe this could happen. A week later on September 25th, a sunday we had walked in to our friends tattoo shop to get these footprints for ever imprinted in my skin. About half way through the session (6:30 pm)Vince gets a call from the hospital. Unaware of what was going on I started getting very nervous, worried that something had happened to our angel. After a short phone call vin came in saying Dr. Razzouk wanted us to come in to sign paper work as soon as possible and hung up. I began running questions through my head of what paperwork this may be, maybe scarlet was slipping fast and they needed to have our consent to let her go.. Not even 10 minutes later his phone rings again. Going outside he began to talk, still getting tattooed I grew more and more worrysome until he looked through the window and gave a thumbs up and touched his heart. Still confused I waited till he came inside, "They have a heart for scarlet," Vin spoke these words and it was as if he was speaking another language, asking him to repeat he said.. "They found a donor heart babe, scarlet has a heart." Being completely caught off gaurd and overwhelmed with joy I didnt know what to do, they needed our consent over phone so they could prep her for surgery before we came into the hospital to sign actual papers. We consented, said a prayer with the doctor and told our buddy to wrap up the ink so we could go. Leaving the shop with half done tattoo we called the family letting them know of the amazing gift that the Lord had just given us. Not even 3 hours later my parents were there waiting in the NICU with us for Scarlet to go into surgery, and Vins mother, who had just arrived in NY for a business meeting was catching the first redeye across the entire country before even unpacking her things to be with us..She was to go into surgery between 10pm-12 am and she was all ready to go. With many congratulations and happy faces we waited patiently for her to be wheeled to the OR. Awake the whole time miss scarlet greeted each person and occasionally gave a smile as if she knew what gift was to be given to her...10 pm rolled around, then 11, 12 and 1. Getting anxious we asked if they heard anything, then a call came... Nothing would happen till morning. Not sure why, or what was happening we were sent home for the night to rest. I literally stayed up questioning why and what was happening, did she not get the heart, did they get our hopes up for nothing.. with a prayer for comfort I layed my head down to rest for the night. Early the next morning of the 26th I called the Hospital, Scarlet was to be the "second case" for the day, meaning another person was going to OR before her. A little frustrated I rested a little longer, thinking I had time to do so. After awaking the second time we got dressed and headed to the hospital around 10:30 am. Walking up to the desk one of our primaries Sandy was sitting talking on the phone when she saw us, she expressed with some emotion "you guys im so sorry she already went down into surgey, I tried calling you, but they already took her." Being that we had waited with her for 7 hours the night before we were ok with this, and we went down stairs to get a pager so we could be updated. 12:30 pm Scarlets surgery began. From there we waited and waited, heart families and friends came to visit us and wait with us during the procedure and after 6 long hours later we got the text "scarlets new heart is in and working well." Relieved we waited for the next text at (6:45pm) that said "baby is in 5800 unit."
             We waited about 20 minutes before Dr. Razzouk came in and told us the remarkable news... "Surgery went well, her heart was a perfect fit, not too big, not too small, and it took off as soon as we started it." Words cannot express how surreal and incredible this was to hear.. Our daughter is a living angel. Someones selfless actions gave our miracle a second chance. No amount of gratitude can ever be expressed to the donor parents. If were given the chance we will live our lives showing them how much we truly appreciate and love their miracle. We want them to be part of our scarlets life, just as theyve given us theirs. The first time we saw Scarlet post transplant was absolutely amazing. PINK!!! Thats the first thing you saw. What a difference from the picture of the 5 of us above to the pink gorgeous little girl you see with a brand new, 4 chamber, beautifully pumping heart. The first 24-48 hours were told would be the most critical, and to me the most stressful, but shes pulled through, shes getting extubated hopefully tomorrow, then chest tubes and then little by little meds will be cut down to only the ones she will remain on when we go home, and we can hold her and pick her up whenever we like.. Here I sit writing our miracle story at nearly 55 hours post transplant, preparing for the day that is soon to arrive that we bring our angel home for the FIRST time in her almost 4 months of life!!! Anywhere from 8-15 days before we can bring her home and boy has the stress of the cleanliness of our temporary home came to my attention. Scarlets new heart is not the end of our story, her life will consist of many many many medications to suppress her immune system so she doesnt reject her heart. With a suppressed immune system she has more chance of getting sick which means my new title is "mom, the germ freak!!" For the first probably 6 months we will try and keep scarlets visitors to just family, and only if theyve had their flu shots and are not sick, well scrub up when we come in the house, sanatize and then if potentially even sniffley sick we will put masks on... We will have clinic visits twice a week for the first 6 months and must stay in the loma linda area for at least 4 months before returning home to vegas. Scarlets journey is not yet finished, her little fight at life has just begun.. With all this said... I couldnt be more thrilled for my new title, the new responsibility and more so... to bring my child home. She is our world and yes it will take time to get in the routine of giving meds several times a day, 10 to 12 different medications but to see her grow and see her gorgeous eyes everyday, to be able to hold her with no wires is the greatest gift we ever could have been given. I wish I could hold the people close and thank them from the bottom of my heart for giving us this chance. We thank God everyday for giving us this miracle and this chance. Scarlet is here for a purpose... and we believe that her life should be utilized to help others in this situation, not only the babies waiting for transplants but donor families as well. Letting them know their not alone. We are starting by getting involved with our friend Matt and Sarah Hammitts foundation called Whole Hearts Foundation. Please make sure you go to facebook or even the WholeHeartsFoundation website and learn more, show more in supporting CHDs and Organ Donation. Scarlets life has just begun and we hope you will all continue to follow her in her journey through life. Thank you for all your love and support, for all your endless prayers, God is Good and he has gotten us here to this point. He saved our daughter and we will forever dedicate her to him. <3 No matter how long her life is she will know her creator and learn to love him with her whole heart. We love you all and hope that whatever your going through at this point in time in your life you realize that God will reach down and pick you up. He never gives you more then you can handle and tomorrow is always a new day. Take things a day at a time. We did and we still do. Scarlet has given us a reason to believe she is more then we could have ever asked for and to think... they wanted us to terminate.. Man.. were they wrong. Shes influenced more people then those people could ever dream of impacting. Im proud to say, I am Scarlet Marie Griffiths mother, a germ freak and blessed one at that.

                         With all our love,
              The sock monkey Family..
                   Alexis, Vince and Scarlet
                          3 whole hearts <3

Wednesday, September 21, 2011

"Hope is Everything"

Our precious angel is fighting her battle as best she knows how, and unfortunately her time is wearing thin. Last time we checked in Scarlet had aspirated (choked on her milk and coded), since then shes been getting worse.. She was started on 6 antibiotics to try and help fight whatever infections she may have gotten. The pneumonia seems to have cleared up but then she developed something called NEC which is where her intestines become swollen and get blisters if those blisters were to pop that part of the intestine would die and her "sewage" would leak into her little body doing way to much harm. Luckily with the help and guidance of MANY doctors theyve gotten it to the point where they think she may fixed this and they may start feedings again. Scarlets heart function is worsening every day. She keeps retaining all the fluids shes getting because her heart cant work hard enough to get rid of it so shes getting super puffy which makes it even harder for her. The profusion is something we seriously worry about, her heart is beating so hard you can see it from across the room. Shes had more doctors then I can keep straight coming in and examining her everyday. Shes no longer on hold for a heart, we just need one to become available and she may have a chance.

Due to Scarlets loving looks and awesome personality she has picked up what the NICU calls Primaries :) Nurses that when they work, work specifically with Scarlet, thankfully we have what I consider the three best primaries at loma linda, theyve all worked with cardiac babies and they all just absolutely adore missy girl. They make hard days much easier on us, they know what to say to comfort and they know how to explain reality in a calm way. This week theyve been talking alot about the "what ifs" of our life at this moment.. What if scarlet were to go into cardiac arrest and couldnt be brought back. As hard as this is to hear, its definitely a possibility... no one knows what God has in store for this little fighter except for himself and scarlet. We are to come up with a plan of how we would want to experience her passing and although we all hope it never has to be put into action its something that we need to have just in case. Scarlet is three months old and to that age where she looks at EVERYONE. No matter whos talking that girl will follow your voice with her eyes, she loves looking at mobiles and watching you talk.. Sadly shes been very drugged the last week to try and keep her from wiggling and working harder then necessary to stay alive. Its definitely hard to see her lie there motionless, every now and then shell peek her little eyes open as if to say "Im still here mom&dad, dont give up on me yet," theres always that little twinkle in her eye that just melts my heart. They paralyzed her today for a few hours to try and keep her knocked out while they inserted a new central line, for some unknown reason her last one clotted and they needed a new one in ASAP. But she eventually woke up and gave me that look and all I could do was thank the Lord for getting her to this point. Although were not out of the woods, each little achievement keeps us going. Seeing her eyes are achievement enough.
Our media efforts are doing great, a friend created a page on facebook for scarlet called "Help get a new heart for Scarlet" and thousands of people have liked it. Over 6 newspapers have taken scars story on in California, Illinois, Oregon, and Vegas, shes had a couple radio announcements in Oregon and as of tonight shes had two TV debuts thanks to her grandmas! Channel 13 in Las Vegas as well as Fox 5 did a little segment on our angel and especially Organ Donation Awareness. We hope that in our endless efforts our daughter, along with her heart friends and others can be saved through organ donation. Its hard going through this but she has opened our eyes and hearts to a whole new world, a realistic world. We are not the only ones going through this. We know of 5 babies at Loma Linda alone waiting for heart transplants. Think of all the other hospitals throughout the US. Its disheartening. But were here to instill hope in others, I recently finished a book about this little girl named Sarah who had CF.. She passed away at just the age 13 and in the book her mother wrote, taught me more thankfullness and power of prayer in 2 weeks then in my 19 years of life. The last day of sarahs beautiful life she told her mom.. Hope is Everything. Its just that.. Organ Donation is going off Hope.. and Hope is Everything. As I sit here tonight with love in my eyes and Hope in my heart I can only wish that we have brought hope to others, that Scarlets story will be heard by millions, and her life will be given a second chance. If youd like to see scarlets TV segment go to this link (http://bcove.me/ly1mgw97)... and please consider going on facebook and liking scarlets page. Any bit of support gives us hope <3 Thank you for the prayers, they keep us going.

With all our love
The sock monkey Family,
Alexis, Vince, and Scarlet Griffith

Thursday, September 8, 2011

Emergency Miracle Needed

        On bended knees, tear filled eyes and extreme love in our hearts we need an emergency miracle.. Scarlet was doing great for the last 3 weeks and on saturday evening during a feeding she started choking and her heart plummeted to 40, Scarlets Primary Sandy had us put her back in bed and immediately started working on her. Scarlet was reintubated and was put on more meds to help her stabalize, she developed pneumonia and another UTI infection which put her on hold for the heart transplant list. The pneumonia caused her lung to collapse and with more antibiotics it recorrected itself although the antibiotics keep her on hold for this list. She has now overcame the collapsed lung but her breathing has gotten worse and a recent heart echo revealed that her heart has stretched and is failing much faster then they thought . Organ Donation is a subject not to be take lightly but is much needed in today’s world. Unfortunately, infants, children, teenagers and adults die everyday due to organ failure. Transplants are a second chance at life, and ones that are greatly cherished.
         We know donation is not an easy decision to make and asking parents to make this decision is not easy for us. Our only chance with her is if she receives a heart transplant, and quickly. Organ Donation is the most generous choice a parent can make when placed in the tragic situation. To give another a chance for life in the midst of it all is absolutely incredible.
We pray on bended knees that Scarlet has a chance at this life, that she may experience all that life may offer her. She is a joy to have and a true blessing to us, we did not think she would make it this far and we can only pray that by some miracle she can stay with us. We hope one day she can share her story with others and the selfless heroic efforts made by a donor family to save hers.
       The thoughts have crossed my mind lately of how unfair it is that baby girl has to go through this, but she knew what she the Lords plan was for her before she recieved this body and she came it gladly knowing these things. Im so proud of Scarlet already and I really pray and hope that she makes it, Im not really sure what wed do if we lost her.. It hurts me to think of this, especially so soon. My fighter is hanging on but were not sure how much longer she can. Our future and faith is placed in Gods hands, he has a plan, we can't give up and must accept whatever it may be.  Also we ask that if you or anyone you know has not yet signed up as an organ donor, please go onto DonateLifeCalifornia.org a non-profit registry and become a donor today. Scarlet and many other babies are not promised tomorrow, please help save another’s life and donate. Many depend on it. One lost child can save many lives. This is a short blog, I appologize, ive been working on contacting the media since we got home and Im needing to feed my hubby before we rush back up to the hospital. Please Please Please pray that scarlet finds a heart in time.
With all our love
The sock monkey Family,
Alexis, Vince, and Scarlet Griffith