Hypoplastic Left Heart Syndrome
Throughout these blogs you will see me refer to Scarlets congenital heart defect as HLHS. This stands for Hypoplastic Left Heart Syndrome, a child with this defect only has the right side of their heart. When Scarlet was born we were under the impression shed go through the standard three surgeries...At just 3 days old she underwent a procedure that showed her coronary arteries were not what they should be and IF the surgeries were successful she could have a heart attack at any point in time... which left us with Heart Transplant. At a week old she had a pulmonary Artery Banding to help preserve her life during the wait.. She also had a balloon septostomy at 2 1/2 months to help.. we almost lost her 4 times, and after waiting 3 1/2 months she got her second chance at life. September 26,2011 an angel entered our daughter and saved her life. Our daughters life will be treasured no matter the length of time she may grant us, though we hope for a entire lifetime. "Enjoy life today, yesterday is gone, and tomorrow may never come." If you'd like to know more about Scarlets condition please feel free to read more of the upcoming blogs.
Thursday, September 29, 2011
With all our love,
The sock monkey Family..
Alexis, Vince and Scarlet
3 whole hearts <3
Thursday, September 8, 2011
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.
Sunday, August 7, 2011
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.
Saturday, July 16, 2011
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
The Sock Monkey Family
Vince, Alexis, and Scarlet Griffith
Tuesday, June 21, 2011
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
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
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
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