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.

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        

Saturday, July 16, 2011

A long wait ahead

       Hello all! Sorry its been so long since weve updated, its been a busy 5 weeks, the good news is... Were still fighting strong. Our angel is past her first OHS (Open Heart Surgery) where they put bands on her pulmonary arteries to restrict blood flow to the lungs and back to the heart, to buy time for the transplant wait. She went through it with flying colors, and was back in the NICU the same day.. Her scar is healing magnificently! A week later, at just two weeks old she took her first plane ride over to Loma Linda, California, where almost immediately after she got extubated, meaning her breathing tube came out!!.. Loma Linda is now our new residency while we wait, it was all very fast, the transition over here. With the wonderful help of our social workers we were set up with an amazing organization called Steven's Hope. Stevens story brings tears to my eyes, if you'd like to read it please visit this website. (Stevenshope.org) His parents wanted to help other families in need and have 2 bedroom apartments they sublease to families, us being one of them. I can't even describe to you this blessing, and the weight it lifts off our shoulders. When Scarlet recieves her heart we have a safe enviornment (home away from home) to bring her too for the 4 months we must remain in Loma Linda. The wait can be long, the longest wait theyve had was bout 7 months just to get a heart. Just getting on the transplant list seemed long. We ran into a few issues, Scarlet having CMV being one of them, after many tests, including lumbar puncture and MRI's they discovered its more or less "asleep" and it would be safe to continue with the evaluation process. It took a week, and many tests to get her there but were on the list!!! July 8th we got the call from a transplant coordinator, and a day later we recieved the official letter. 1A transplant status <3
           Recieving this letter, we immediately bowed our heads and prayed... Yet again another blessing and weight lifted off our shoulders. Our Heavenly Father is here for us and we feel that. Our angel girl is now off IV fluids and completely on breast milk!! :) Not only is she on breast milk but shes taking it straight from the breast, and when we cant be there, bottle! Something they told us she would never be able to accomplish because of her heart. She continues to prove the assumptions wrong and we cherish every milestone she completes. Shes up to her minimum amount which is 48 ccs, which she takes with no hesitation. Weve been able to give her baths and hold her more then ever imagined. We feel very lucky to get so much time with us. They reassure us that they want our wait to be as easy and normal as possible, and though it may be long were very blessed and thankful to be at Loma Linda University Medical Center. Were still trying to get her to gain weight, shes up to 5.5 lbs, the nurses have decided to add an extra supplement, a milk protein to help her and so far it seems to be working.

            We visit Scarlet everyday, I couldn't imagine not seeing her, we get to hold her and talk to her, shes always in high spirits. Smiles are her favorite thing to do for us, shes also found her voice. What a loud mouth this little fighter has, shes got the most adorable cry! We had Vins parents come and visit us about a week after being here and they got to hold her, which was amazing for us. We want all our family to get that chance. My wonderful mother came out here with us to help where ever she could and I dont know what we would have done without her, seeing our angel in our parents arms brings the most amazing feeling to our hearts. The same feeling fills our hearts when we hear from our family, that people who dont even know us walk up to them and hand them checks for our little Scarlet. Theres no doubt were struggling financially, Vin lost his job with the move, but that doesnt seem to be a major stress for us because of the amount of support we have. Dont get me wrong it is stressful trying to live off a small amount of saved money but every time we hear of donations, or even prayers our hearts simply melt and we start crying from shear joy. People don't HAVE to offer, or send money, but they do.. It reassures us that people are kind, loving, compassionate and supporting us through this hard time. I cant express our graditude to all of you that take time out of your day to read our updates, to pray for our scarlet, or even think about us, we know its not something you feel obligated to do, but do out of the kindness of your hearts. <3 So thank you, those two simple words dont really say it enough but we thank you from the bottom of our hearts.
             Scarlet is already setting an example for so many, and she proves her strength. We've met alot of wonderful Heart families through the internet, and even at the NICU in Loma Linda and their support is incredible. We know our heart babies are amazingly strong, and we hope that what people are doing for us, we can do for other people. Recently we met a family thats daughter was born on the 4th of July and is going through the SAME EXACT thing as scarlet.. The surgeries wont work, so theyll do part of the hybrid with the bands and then she will be put on the heart transplant list as well. When we met this family it was like the world was lost, they were crushed, and with a few simple comforting words of positivity my husband spoke to them you saw the hope rise back in their hearts. We continue to talk to them everyday and make sure their angel is fighting on strong, we reassure them that we are there for them and know exactly what their going through and that it will get easier. Yes there are bad days, Scarlets having one today actually, but there are many GREAT days, and every day with our precious angels is a miracle and a blessed one at that. We cherish this journey God is allowing us to take. It sounds weird but we are grateful for this trial and were trying to embrace it anyway we can. Thank you all again for reading and staying close with our story. Ill do my best to make sure the time between the blogs isnt so long next time. Our angel is doing well and we appreciate the continued prayers. Hope all is well with everyone, we continue to pray for the donor families of all babies that make a second chance possible for all our heart transplant survivors. Please keep them in your prayers as well.

The Sock Monkey Family
Vince, Alexis, and Scarlet Griffith

Tuesday, June 21, 2011

Presence of an Angel

             June 15, 2011 at 9:17 am Scarlet Marie Griffith graced us with her presence, 4 lbs 15.5 ounces (which they rounded to 5) and 17 beautiful inches.  She came via c-section due to stress during the labor, the cord was wrapped around her neck and stomach. Our monkey, who was said to come out ashen grey blue came out pretty and pink. With one little cry my heart was sold. As many know with a babies heart the ductus that is open while in the mother closes a few days after birth, due to scarlets condition they had to immediately take her to NICU and get her started on medications to keep that ductus open and our little angel alive. Normally after c-section your suppose to wait 12 hours before getting up and around, at 6 hours I was demanding my nurse to get approval for me to go see my daughter. Waiting to see her was very hard for me. Luckily my husband went with her to the NICU and took our family to go see her. Our baby girl is already 5 days old, were so proud, she's doing very well. The nitrogen level in her oxygen was too good for her little heart and was becoming toxic so they started her on a diluted nitrogen/oxygen supply to keep that number in a safe range for  her. Its alot to explain and especially running on as little sleep as I have been. Even though Scarlet is in the NICU, I find myself sitting up at night wondering what she is doing, what wed be doing if we had her at home and many many more things. 
I cant even express to everyone the amount of love we already have for our daughter. If you have children you know how unconditional it already is, but imagine they werent promised tomorrow, or even the next hour. How proud of them would you be for fighting, how much love would you allow yourself to give.. We have decided that we will give scarlet all of us. No matter how much fear we  have, no matter how much pain we have for what she has to go through, we will give her all of our hearts, even if we bleed. My daughter is my pride and joy and even though the fight and struggle has just begun I try and keep the faith and strength in knowing she will make it through. Scarlet had her first Heart Catheter on Friday the 17th, it went well, they found that her case of HLHS is much more severe then they had anticipated. They feel the best route for Scarlet is not only the hybrid procedure of the Norwood but a complete heart transplant. This is because the surgeries wont fix all of her heart, it will only buy time to wait for a heart. Her first surgery is this wednesday. We will know more when I talk with the doctors tomorrow.. We still have to get details like time, estimated recovery time, and when we will be transferred to another hospital within the region to wait for a heart transplant. 

              Baby Hearts aren't easy to come by, we will have to be patient and pray for our warriors strength to muster through.. We know the Lord is good and will do what he has planned for Scarlet. In the mean time, we are very scared and without my husband I would be lost. He saves me everyday and reassures me that our daughter is a fighter, she will make it. He works hard for our family and I am very grateful that my children will have a father as amazing as him. Scarlet  already has her daddy wrapped around her adorable little fingers. Not to mention she looks JUST like him :) my beautiful baby girl. While we wait to hear what the plan is for our angel I will humble myself and ask that you all please pray for our family. For me and vins comfort and strength while we watch our little girls chest be cut open and operated on this weds. and more for our Scarlet. That with each passing day, with all the visits from us, and the grandparents, along with friends that she finds a reason to fight. We not only want our daughter, we need her, she is an inspiration and miracle, one that should share her story when shes older. Please just prayer for our angel, the world should know her. Thank you for being so patient, as well as tuning in to hear about our baby girl. If you have any questions please let me know, ill try to update a short blog once I talk with the drs. <3

The Sock Monkey Family
Vince, Alexis, and Scarlet Griffith

Saturday, May 28, 2011

Thoughts Become Reality

            The week of May 16th was a very Real one to say the least for us... That monday we met with Dr. Galindo at the Childrens Heart Center of Nevada, he is the man that will be responsible for any intervention surgeries Scarlet may need after her initial surgery. We heard more in depth what her "Hybrid" procedure will be, due to her most recent diagnosis of the cardiac abnormality.. most will remember it as the so called "sparklies." Hearing what Dr. Galindo had to say about the first surgery she will need helped us put it more into perspective and be reassured that the Doctors have a plan for our little angel. Later we met with one of our nurses that will be helping out with Scarlet, Mia. She took us on a tour of the Sunrise Children's Heart Hospital where we will deliver. We went through numerous floors of the hospital touring the NICU, seeing where our little angel will be taken once first born. She'll be given the appropriate attention, medication & preparation for her surgeries, as well as gaining weight in her case. Next we went up to the PICU (Pediatric Intensive Care Unit), which is where she will be taken after her first surgery to recover as monitored. Once she's taken to the PICU floor we can stay at the hospital with our little monkey. 
            As you know Scarlet was underweight by about 2 or so weeks, at the first ultrasound we found that out she was weighing about 3 lbs 6 ounces... Chalking up the protein I did my best to try and help her grow, per the Doctors orders, unfortunately at the latest ultrasound we learned she hasn't grown much more.. she's now 4 lbs 1 ounce.. Its true that the ultrasound could be off, which we cross our fingers and pray for but its unsure till she comes out. Because of her weight my doctor wants to take her out close to 37 weeks. Right now were at 34 weeks 6 days almost 35 :) That leaves 2 1/2 weeks till scarlet is coming... June 15th! We did indeed get to pick her date and unless she wants to come out earlier were scheduled to go in the night of the 14th when we will start induction for the 15th being her due date!!! only 17 SHORT DAYS!!! As excited as we are to see our little angel, were also nervous as to how it will all go, but with faith and strong prayer we believe that baby scarlet will be just fine. She is our fighter. 
             Hello everyone! At the last ultrasound Scarlet also decided to give us a little wave. As I studied the pictures I noticed in the center of her hand there appears to be a heart.. Me and Vin take that as our sign that baby girl is going to be alright. Not every day is promised, but it can be cherished. Nerves are rising, excitement is bubbling and were very eager for these next 17 days to fly by and meet our little angel! Although some may not like Oprah she's brought me a sense of peace the past week with her farewell shows.. In one moment she talked about "Surrendering" something that got me is when she said... "I don't get it God, but I know you do." How perfectly simple that is.. I don't get why this is happening to our special little monkey, but I know he does.. he has a plan. She also sang the song "I surrender all to you, I surrender all, all to thee my blessed savior , I surrender all" All we can do is pray for the strength, God can dream a bigger dream for us then we can and I know no matter what the outcome we will be alright and carry on. "When you've worked as hard, done as much, tried, strived, hoped, just surrender...When you've done all that you can do and there is nothing left for you to do, give it up, let it become part of the flow. Live in Letting Go, you are NOT alone." -Oprah Winfrey. Thats exactly what we have to do. We have done all we can do for baby Scarlet and at this point her destiny is what God has planned for her. We surrender our lives, our path, and our journey to God and hope his plan for us includes our baby girl. 
         Unless things change with in the next 17 days this will most likely be the last post before Scarlets Journey begins. Thank you for all those that have followed us up till this point, and supported us in every way, prayer, donations, and such. If you know about the baby shower and are planning on coming, its still going to take place on the 18th.. Either natural or C-section I should be recovered and even though baby scarlet will not be there or in my belly she will be on this earth and we will have many many photos to share. The maternity shoot still hasn't taken place, it will happen next sunday just one short week before scarlet comes :) Thank you again for all the love and prayers we have felt. Don't hesitate to ask questions or comment anything, our blessings are with you, hope every one is great. 

The Sock Monkey Family
Vince, Alexis, and Scarlet Griffith

Monday, May 9, 2011

Sooner then Later??

              Coming in at 32 weeks, 1 day normally we would have about 7 weeks, 6 days to go.. turns out our little monkey may be scheduled to be taken out at 37 weeks.... leaving only 5 weeks left! At todays ultrasound, Dr. Gorski told us Scarlets weight is smaller then what it should be.. she's weighing in around 3 lbs 6 ounces and should be about 4 lbs 2 ounces. The Dr. wants her to gain at least 2 more lbs before D day. If around 37 weeks it looks like she has gained enough she'll let her go closer to term.. If, however; on the other hand she doesn't seem to be growing well enough on her own, the doctor would like to go ahead and induce so she can be out and fed enough to gain the wait necessary. We have a ton of questions obviously as were sure you do too. A lot of those questions are still unanswered but Dr. Gorski says as we get closer shell update us on her intended plans. The initial shock for me was seeing where 37 weeks lands us... June 12th. JUNE 12TH! Thats like a month away, its so soon.. Not to mention the baby shower is on the 18th!!! Oh my goodness. Everything is happening so fast. BUT... a suggestion the Doctor gave me to help her gain some weight, is eating more protein. So naturally me and momma treated ourselves to Fridays where I got steak for lunch today :).
             Over the next couple of weeks we will go into twice a week monitoring to make sure she's still moving around, heart rate stays strong, and my blood pressure is good. In another two weeks we will meet with Dr. Gorski and Dr. Rollins for a heart ultrasound update. In exactly a week we will go to Dr. Rollins office where we will meet one of the surgeons, an interventionist, as well as a tour of the NICU. So much in what seems like such little time. Or more so quick time... These weeks have already been passing so fast its so hard to believe our little monkey could be here as soon as 5!!!
                Heres some 4d pictures of our little monkeys face, she was being stubborn, having her hand right up close to her face blocking half of it. Needless to say, we were still excited to see her so up close. Vin thinks she doesn't look like him, I told him hell have to wait till she pops out. Were both anxious to meet our little girl but hope she continues to grow so she is healthy enough to undergo all her surgeries. As you may notice I have incorporated my Faith necklace in both pictures. I do so for my Scarlet. She has given me a new sense of Faith. Her life is in our Lords hands and we can only pray and have faith he'll have her come to us safely for a long life to live. Contrary to whatever news we hear our faith stays strong... for Scarlet. We want her to know that no matter what the outcome could be we have all the faith in her and our Heavenly Father, we will never give up on her. She is a fighter, she has proved it thus far, and we know she will continue to. As for being emotionally ready for my little Heart Angel I cant say Im 100% but if Scarlet can beat the odds by making it this far, I can be strong, or at least try. No one can ever say they're ready to see their childs heart cut open to be exposed and operated on, to be put through the wait of a surgery, wondering what the outcome... but again... We have FAITH. We hold on to that, and the joy of seeing our little girl and we are grateful these things are possible. 
              On the last note of this blog, baby shower invites are going out either today or tomorrow :) And we may have pictures of her if she decides to come the week before :P Hopefully ill still have my giant baby belly and be carry her a little longer :) Thanks for staying tuned. We appreciate all the continuous prayers and followers. Also... we have a pregnancy shoot at the end of this month :D Exciting! Cant wait to work with Bryan Steffy, hes the BEST! <3

The Sock Monkey Family
Vince, Alexis, and Scarlet Griffith

Wednesday, April 27, 2011

Patience in Our Afflictions

          Yet another Heart Check up Ultrasound. No new pictures of baby Scarlet, thats in two weeks when we have another growth ultrasound. Every day we wake up to a doctor appointment we choose our optimistic mood for the day. Basically no matter what the outcome we get from the doctor we try and remember to stay positive and that we've gotten this far, we can make it all the way. Good news and not so good news. Pretty much the fluid around her heart is gone :) Which is amazing news, nearly a miracle, the doctor was very surprised. Today Dr. Rollins (Pediatric Cardiologist) saw what he called "Sparklies", explaining that there was a micro-valve letting blood into the left side of her heart, but because of HLHS does not have an outlet... so once she is born, even if the surgeries are successful, this valve could create built up pressure and could possible rupture, resulting in a heart attack at any point and time in her life. She's a"ticking clock." 
           Well of course I started to tear up and freak out, then I remembered the optimistic mood I put on for the day. All these questions and fears are running through my head, how long will I get with my daughter? What if I am not around when it happens, if it happens at all? So many these things making my mind going through a roller coaster of emotion. As I  sat there thinking of something to keep me optimistic I remembered a blessing my father placed upon me when Scarlet was first diagnosed at 18 weeks 6 days, and it said "Be patient in your Afflictions" in another, "Faith" was emphasized. Through all of these trials with our little monkey, I feel like i've been granted these exact things. I am learning to be more at peace with the news at each ultrasound, and understanding that no matter what is said "could" happen, necessarily will, especially with faith and the strength and courage to push forward giving her a chance. Scarlet has already opened my eyes to so many things. I never thought i'd appreciate the lessons my child teaches me before she is even born. I am so grateful for my daughter, and I hope that through faith, and the power of prayer another miracle can happen, and if she is going to have a heart attack, I hope its when the Lord wants it to happen. Obviously Im rooting for a long healthy life fore her, and if she goes that way, not till she's at least 75. 
           So contrary to the news being not so good, I am very happy to say her heart  beat is a steady 156 and beating strong. She is our fighter. The outcome of Scarlets life is not ultimately in the hands of the doctors in which her surgeries are be performed by, or even us, but more between her and the Lord. I am placing my Faith in the Lord and my baby girl. I believe that through them, she will make it. Along with keeping my Faith, I just want to give her more of a reason to want to fight to live, and thats all I really can do. We will just create as many memories as she will grant us with and love and cherish every moment. Because memories are so important I have decided to put the BabyShower back on, June 18, 2011. I feel Scarlet deserves the celebration or in other words a "hope, we believe in Scarlet" party. :)
          May 9th, 2011 is her next growth ultrasound, I will do another update to let everyone know how her stomach is growing. More updates with the Save Scarlet HLHS Awareness, recently Vins side of the family held an incredible bake sale at Kishwaukee College in Illinois, raising over $400 for our little monkey. Here are some pictures from the Welty family bake sale in Illinois, Thank you to all our family that put their talents to the max and made all the food and helped in each little way. We love you very much. Looking forward to bringing our little monkey to meet all the family
           The bracelets are continuing to sell, overall we've been doing amazing with helping spread HLHS awareness. The warmth and love I  feel in my heart for our daughter is so immensely indescribable, not only from family but even complete strangers. It helps reassure me that there is a better world out there then what is advertised across all the social networks. The good people are often lost amongst the evils of this earth have shown themselves, and I appreciate the community that is stepping forward showing they are there for us. We truly appreciate and feel the love that is being sent our way. Prayers are especially felt. Well, as long as this blog took to write I believe i've said what is efficient enough to let people know how were doing, and whats going on. Again, we appreciate and love the readers, and supporters. Until next time, don't forget to have patience in your afflictions. 

The Sock Monkey Family
Vince, Alexis, and Scarlet Griffith