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.

Saturday, February 18, 2012

Time Passed

Well.. first I want to apologize for the length of time in which I let go by before I updated this. There has been craziness, as many know..

After Thanksgiving we returned to our temporary home in California. Everything seem to be perfect, but it wasn't.

In December an echo revealed that scarlet had excessive scaring on her aorta.. And Transplant admitted us then and there for an emergency ballooning procedure. Poor Scarlet couldn't eat for 8 hours and was screaming bloody murder the whole time.. She screamed so hard she passed out a few times, which broke our hearts but the procedure went by without a hitch. Which prayers answered we are more then grateful for.... Once out of the hospital scarlet got to come back to the apartment were we got to do some new things :) One which was starting food, Mommy "yay", Scarlet... not so much. hahaha, she now eats like a champ but starting out was rough we got tons of this is gross faces, along with gagging herself so she didn't have to taste it. We also did more happy tummy time, walks, more quality time and therapy with mommy and daddy, the little things which some may find silly but to us mean the world.

Still, life continued on between Loma Linda and Vegas for weekends, before we new it, Christmas popped up like a jack in the box... Scarlet got to meet Santa for the first time thanks to our wonderful Charity Stevens Hope for Children throwing the christmas party were heart buddies, Lexie and Zachary got to take pictures with scarlet and santa. Stevens hope also blessed us with a bag of presents from them, making our holidays perfect.. We spent Christmas at home with the family and enjoyed every minute of it.

After the Holidays we planned on returning home to vegas at the four months post transplant date Jan. 26,2012 when another unexpected occurrence took place. Scarlet got a double ear infection, amoxicillin just wasn't cutting it and augmenten was started. Turns out Scarlet is allergic to that particular antibiotic and it took two weeks of puking up everything she had and loosing two pounds to figure this out and land us back in the transplant office and being readmitted for vomiting in dehydration. Once in the hospital her rash started to appear, they stopped augmenten which luckily did work aside from making her loose weight and dehydrating her and benedryl was the easy fix. We were told once her vomiting was under control we could return home... But oh to the contrary. 

Poor Baby.
Scarlets Coarctation was tightening again in January and this time they want to do a full repair.. Emotions fly high when they tell us they're going to take her in now for a open heart surgery...and then arguments between some doctors and they tell us were now going to wait, for how long??? We never get our answer.. just simply to stay in the area. Well Stevens Hope then needed our apartment for another family and since wed already been there our 6 month stay we had to find a place to go.. But where would we go?? No money, no jobs, no family.. We prayed and prayed, we stayed at the ronald mcdonald house for $20 a night about 4 nights, when our prayers were answered. I receive a text from an old NICU family of ours wed met back when scar was waiting for a heart, they jumped on our journey wagon when we awaited the arrival of their son Emery to be born. Cindy, Emery's mother said she had read about our situation and would love if we would come live with them till it was time to go home. What a blessing they are to our lives, they sheltered us, fed us, even raised money for us, and scarlet had a new little boyfriend who she was/is quite fond of.. we definitely got to make friends for a lifetime and what an extreme testimony that gives me in "Everything happens for a reason.":) 

Scarlet & Emery Jay <3

During our wait to return home we got to visit our heart sister Jasmine who received her Transplant in November and was finally out of the hospital, boy was that exciting for the whole family. Both of the girls being from vegas we wanted them to get aquatinted and it was such a wonderful experience to see them interact with one another.. Holding hands, laughing, staring at each other its as if they knew what they had gone through together.. Which was just absolutely beautiful to witness, two miracles meeting and loving each other so much. These girls keep me strong.
We stayed with Cindy, Rick and Emery for about a month when Scarlet started to turn around, she kept food down, they switched some meds around to help her reflux (turns out she also became immune to her cellcept which she was puking up) so all of these things helped her keep her weight on and before we new it they were saying we could be released home to vegas. The transition was bitter sweet, to say goodbye to our new friends, and even old friends and say hello to our new but old life again.. Scarlet turned 8 months shortly after returning to vegas, as well as celebrating her first valentines day :D The best valentine I could ever ask for she is always so smiley and loving...
Currently we are waiting for a call from transplant to schedule her next open Heart Surgery to repair her coarc fully, and hopefully completely fix and resolve this issue. Scarlet has a pretty bad ear infection but still manages to smile past it at anyone and everyone she sees. Shes getting so big hard to believe shes almost 5 months post transplant and 4 months shy of a year old what a miracle shes been in our lives. I hope to update the next blog with success of a surgery, or even a date of the surgery. I promise to not keep it so far apart this time and follow up with a blog every now and then. Thank you for continued prayers for Scarlet and her Heart buddies, we love you all and love all the support you show us. Hope that the start of your 2012 is as miraculous as ours <3
With all our love, 
The sock monkey Family,
Vince, Alexis, Scarlet, and Adley Griffith <3

Friday, November 25, 2011

The blessing of Thanks

Well here it is, the first family picture, all four of us together at last and we couldn't be happier. We decided to take our little family home for this Thanksgiving, after all we've endured we enjoyed being able to be surrounded by loved ones. Scarlet got to meet her puppy Adley for the first time, instant hit! As soon as we introduced Adley to his new little sister it was love at first lick, he became very protective over Scarlet very early in our trip... We only went home for two days and you would think its like we were coming home from the hospital a first time, Ad new that was his to protect and love. Everytime Scarlet would cry or make some type of movement adley would be at her side wimpering, wondering whats wrong. At one point he heard something and barked real loud, went to check it out and when he realized there was no threat he came and checked on his little sis. Could we be any luckier? A perfect family.
           Wednesday is when we left after a whole "keys locked in the trunk ordeal", got home around two in the afternoon and started sharing scarlet with her nana, papa, great uncle tony and her best buddy and second cousin ethan. As everyone loved her I sat staring at my beautiful family, all together, on a day of Thanks with a blessing beyond words in their loving arms. A heart transplant child, a gift more precious then anything I can every imagine, and shes with people who love and cherish her. Later in the night Grammy Kim and papaw Jim came to visit before papaw was off to the airport, and then again, I think... I am the luckiest girl in the whole entire world, the most amazing in-laws a girl could have. They came to visit their granddaughter when they've worked more hours in a row then I can fathom, and another getting ready to take a red eye flight to another state, yet they still have time to come and see her. 

The late night of Wednesday we went to go visit Scarlets, godfather James, Aunties: Courtney, Erin, Alysha, Anna, Uncles: Travis and Riley, what an adventure that was, everybody wanted to hold miss Scarlet. As many know my husband and I are "only children" we have siblings but we grew up in a one child household, so alot of  these aunties and uncles in vegas are best friends, friends that through this all have stuck by our side, supported us in all our decisions, and love scarlet almost as much as we do. We set up a surprise for her godfather and auntie Alysha because theyve wanted to see us so bad, we made sure with the help of some aunties that it was made possible. I think we were a success :)
They were beyond happy to see us.  

Thanksgiving day was even better then wednesday, a whole day with my amazing family and many friends, Scarlets Uncle Ricky Bobby came over and all the wednesday aunties and uncles came to visit. Dinner was fantastic, and just the warmth, happiness and love I feel from everyone in that house was outstanding, overpowering, and inspiring. We may have been through alot in the last 5 1/2 months, but being there, with everyone and especially our miracle girl, its as if it never happened. I am grateful it did though. As weird as it sounds, I appreciate Scarlets heart condition, its led us to many more amazing individuals and families that we never would have had the opportunity to meet unless it happened this way. The Lord trusted Vince and I to bring this child into this world, with half a heart, and guided her and us to this point. I thank him. My life has more meaning now, then ever before, because of scarlets CHD. Im not sure I would have appreciated life, or my child as much if we hadnt been through and going through all of this. Thank you Lord, for granting me the opportunity to be a mother to a blessing.  

Thanksgiving is more then just one day for me, its everyday. I couldnt be more thankful for the family I have and the family I added to mine when I said "I do" to the most incredible husband and father for her children a girl could have. I am so very blessed to be able to give thanks to all my loved ones, to have a reason to be thankful. And to our donor family, that made the blessing of our thanks possible, thank you. Thank you wont ever be enough, how do you just say thank you to someone who gave your child a second chance. My prayer for Thanksgiving was that even though theyre going through a loss this holiday season, I hope they find peace, I pray that theyre happy, and with their family, surrounded by loved ones, just as we are, and that they know that their childs heart will beat forever with more love then they could ever imagine overflowing it. Scarlets life... Wow, I just am for a loss of words, my heart is full, my love for our donor family and my daughter is overwhelming.

And thank all of you, who even though you have your own lives youve taken the time to pray, think, love and support our family through all of this, it brings a light to the world that I was afraid had gone. Good people have been dampered by the horrible power of satan and his grasp of negativity and such he has on people, but youve shown me and my family that there are thousands out there, even hundreds of thousands, that care about others, even if their not known personally. This holiday season is special in an of itself because of scarlet, but you all have just made it so much better, knowing that there are people out there that are or have prayed for our miracle, or even our heart buddy Jasmine who is still patiently waiting. Thank you all. I can only hope that maybe scarlets success has given you a bit of hope or happiness this holiday season as well, be proud of yourselves for helping make a miracle happen through the power of prayer, and know that we love everyone of you, and consider you part of our heavenly family. The beautiful girl has decided shes going to wake up now so ill leave this blog with a few more pictures. Thank you all agian, those simple words will never be enough to truly describe the immense gratitude we feel in our hearts for all of you.
With all our love
The Sock Monkey Family,
Alexis, Vince, and Scarlet Griffith <3

Wednesday, October 26, 2011

Together At Last

Today, Scarlets heart has been in exactly a month, shes doing amazing, September 26th, 2011 is scarlets second chance birthday, happy one month strong angel. What a transformation our girl has endured. From a Smile with a stapled chest, to a carseat two weeks later, and going home for the first time on October 10, 2011 just five days shy of her four month birthday. She is our Miracle. Its as simple as that. Thinking back to all that weve gone through its such a true testimony of what the power of God can do, to be here where we are today. With only eight medications, three times a day, and twice a day IV treatments at the hospital we cut our ties and took off to our temporary home. Weve been home for a month and I honestly cant describe what a complete and utter joy it is.. We've finally got to experience normal, a baby screaming at in the middle of the night because shes hungry, and us waking up in between feeds just to make sure shes ok, but I couldnt be more grateful. This is being a mom, and I am in love with it. We lay on the couch and watch movies, we laugh together and sometimes cry together, we change outfits two times a day because of spilt over diapers, take naps together, and we eat all the time! At first me and Vin were really stressed out with getting in the routine of everything, medications, hospital trips, checking heart rate and all the normal baby stuff. She had her NG tube in her nose for feeding and an IV in her arm for her treatments, and she fought her meds quite a bit as many know from my complaining and worrying on facebook. She had an issue keeping her most important med down which really stressed us out but again by the grace of God shes been able to keep it down, she still screams, and even gags but she doesnt throw it up, personally I think shes learned if she does it just has to be readministered and she'll have to go through it all again. After about three weeks her picc line finally went bad and they had to try and replace it, with six attempts and no anestetic, I had to ask them to stop, they placed a temporary IV, which I am happy to report is now gone for good! Three days ago they took it out and switch her gancyclovir (for CMV) to oral Vallcyte so our only time at the hospital is now for clinic twice a week, which is enjoyable and a breeze. We met with Dr. Razzouk, Scarlets surgeon about three weeks after her being home and he said she looks absolutely amazing and what a true miracle the heart was to fit perfectly. We are so grateful. He also said as soon as we get a little farther post transplant we can go home for the weekends, we can actually take Scarlet to her home to meet her puppy, and get a little taste of what life will be like when we return home for good in Feburary.
What a true joy she is having home. Scars a great baby, she only cries when shes hungry, which makes it easy to figure out what she wants, although its hard because we have to check her diaper every so often, she never tells us when shes dirty.. She loves interacting with people and listening to your conversations, shes very nosey. Shes full of smiles, and is just learning to laugh and make cooing sounds which just melt our hearts. This girl can eat, since shes been home shes gained over one pound, she eats about two to three ounces every couple hours, and shes started holding her own bottle.. We thank God and our donor family everyday for our blessed miracle and the opportunity we get to be together at last. A family, something we always knew we were, but weren't quite sure wed get the chance to be. Scarlet is our joy, our reason for carrying on and because of her we know we can get through anything. The road is no where close to being over, it will be a life long journey of medications, doctors appointments but most of all it will be a life with Scarlet, a beautiful miracle, a true testimony of faith, a gorgeous smile and an amazingly strong personality.
We hope you will continue on with us as our little monkey grows up, along with our family. We also hope that we can continue to help others see, just because things get tough, and sometimes seem like all hope is lost, keep your faith strong, and God will be there to hold you up and get you through. The Lords will be done, whatevers meant to be will be, and remember to love one another, for love, hope and faith is all we can have in this world that cant be taken away.  We feel so blessed to have this miracle and, I cant even explain how grateful we are to all of you for following and supporting our family through all of this. Thank you all. We love you and you are part of our miracle, never to be forgotten and always remembered. Please always remember to pray and thank God for the littlest things, hes there, and he hears them, and answers them all in his own way. We will update in a few weeks, but so far, so good. Scarlets Home at last and thriving beyond all expectations as usual.
With all our love
The sock monkey Family,
Alexis, Vince, and Scarlet Griffith

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

Sunday, August 7, 2011

Scares & Prayers

 Look at our monkey, NO OXYGEN! August 4, 2011 we came in to see our Scarlet on complete room air, satting wonderfully in the high 70s. We were under the impression that she was thriving. Unfortunately to our dismay she was actually doing worse on the inside. Her heart echo from that week had changed significantly more from the previous week. So, because of this they did whats called a balloon septostomy opening a little valve in her heart from 1 mm to 6mm. They took her down to the Heart cath lab, she had to be reintubated and it was done within a few hours. When we went back up to see her we noticed her leg was triple the size it should be and she was ghost white.. Her sats were OK, not the best and she was requiring much more oxygen then before. We figured it was just her little body under stress, well... the next day after visiting we decided to go see a movie to calm down a bit from all the emotions. Little did we know that was a terrible idea, our phones on vibrate caused us to miss nearly 10 calls from NICU asking us to come in immediately. Half way through the movie I checked my phone and next thing, we were up and running to the car. Scarlets stats had dropped into the 20s! She was taking a turn for the worst. Tears running down my face, racing in a car to the Hospital, we said a prayer. By the time we got to the hospital she had stabalized a little bit requiring more oxygen and still very pale, they also discovered she had pnemonia. Her leg was still triple the size and it was due to a blood clot from her pic line in her leg so, they had to shave both sides of Scarlets head to get a new Pic line in, poor baby!             
 She is still in very good spirits and nearly 72 hours later, 3 different antibiotics, and 2 blood transfusions our baby girl is looking much much better and is being weaned slowly off her intubation. Thousands, even Millions of prayers and strong faith have got us to this point. Without our Heavenly Father and angels guiding the doctors and giving Scarlet the strength our baby girl may not be here today fighting her battle. Shes not happy with her intubation tube, shes use to sucking on a binky and things when shes mad so hopefully that will encourage her to fight harder to get it out. Were so blessed, were still staying at Stevens Hope and even though we dont have a lot of money to our name were trying to give back as much as we can. Vins mom Kim applied for something called AeroCares through her organization and its where they give money to families in need that work for Aeropostale. We were accepted and the money recieved is in the process of going to Stevens Hope. This organization helps so many families, who are absolutely incredible and we are so blessed to be part of their Special Family. <3 Its hard not working and not having any money but were trying to find jobs currently and possibly finding a local news station to come do a story on Scarlet and Organ Donation. We want to help spread awareness the best we can and get these amazing childrens stories told, their voices cant be heard yet so its up to heart parents to speak up. My mind has been going a thousand different directions with all the Scares and Prayers weve had this past week but I want to give back in a big way. Not sure how yet, or even when but I pray that the Lord gives me the opportunity to spread the word and give back to all the amazing people in our lives.  Still scatter brained Im not sure what else to mention, of course I can always answer any questions you guys may have so for now I will sign off saying once again, Thank You. For all the love and support you guys give, for the thousands of thoughts and prayers you send our way, they are much needed and felt. We have complete faith that our angel will make a full recovery and have all the energy to wait the long wait she still has. Scarlet is almost 2 months old, shes 7 lbs, 21 inches long, and the biggest love in the world. My pride and joy, my strength, she is my Scarlet Marie Griffith, Half hearted Angel who continues to fight the battle from leaving a piece of herself in Heaven. Here are some more pictures to enjoy before she took her journey this week. Finally getting her in outfits and seeing her little personality.<3 thank you all again.

The Sock Monkey Family
Vince, Alexis, and Scarlet Griffith