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, 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