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.

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

Thursday, April 14, 2011

Power of Prayer & Positivity

Twenty eight weeks, four days, and baby scarlet is still kicking. Just had another growth ultrasound, she's weighing in at about 2.4 lbs and her stomach is about 2 weeks too small for where we are. Although this is not what we were wanting to hear we are trying to stay positive in thought. Aside from the stomach being small everything looks good, heart is pumping good, fluid level surrounding the heart hasn't changed much. When asking the Dr. what I could do to help her stomach grow (wanting to hear, "just eat more"so I would have an excuse) I heard, "Resting"... Bed rest?! Me... NO! Luckily it is not complete bed rest, just trying to take it easy. If i'm not at work, it's in bed laying on my side, letting blood flow to her heart and body will help her grow.We have to go back weekly to be on a heart and contraction monitor to make sure all is good.  Fingers crossed and hope alive we will continue to use the power of prayer & positivity to help our little monkey grow.

As more time goes by we find ourselves getting more anxious to meet her, to see her, what will she look like, how will she do... So many questions, wonders, and worries. We have 11 weeks left and the bigger my belly gets the happier I find myself. Scarlet always makes her presence known by kicking, tumbling, tugging on my belly button (my favorite), movement is a great sign for our little one and I enjoy every second of it. Today at the ultrasound we got to see our babygirl up close and personal. Literally. She turned and looked straight at us twice. We got about 7 pictures, and one was of her chubby little cheek and eye. The further along we get well contemplate 4d so we can see her a little more detailed. This is a pretty short blog this time around, not really sure what to say except, my faith in power of prayer and positivity is growing ever so rapidly. Save Scarlet efforts are still going strong, and medicaid went through!!! We got reimbursed for our already paid ultrasound appointments. The Lord is definitely blessing us with work, and much much more dealing with Scarlet. Here are some ultrasound pictures and we will be back in two weeks with another update from the Pediatric Cardiologist and ultrasound dr. Until then everyone, thank you for continued prayers and followers. <3
The Sock Monkey Family.
Vince, Alexis, and Scarlet Griffith

Ps. The top ultrasound picture is us looking at her lips and up her nose :Dnce, Alexis, and Scarlet Griffith

Saturday, April 2, 2011

Closer and closer

Thank you for being so patient as I take my sweet time posting this blog.. although I'm not sure how long my update will be, it is indeed filled with wonderous news about little baby scarlet. At our last ultrasound with the pediatric cardiologist Dr. Rollins we saw our little monkey up close and personal. Not only has she nearly doubled in size since he saw her last she was in the perfect position for him to get good views of her heart.
           Coming in at 27 weeks the Dr said it was time to proceed with meeting more surgeons, taking tours of the nicu and so on and so forth. When her defect was first seen he said although wed proceed its probably best to hold off on that.. this time it was quite the opposite, his office will be calling us to set up tours and such within the next few weeks. The fluid around her heart is now gone, meaning the pressure isnt causing her heart.to suffer in the finishing of her development. Also he mentioned the strength of its beating.. normally in a baby with hlhs the heart has a hard time squeezing together and scarlets is squeezing strong. Hearing descriptive words such as, Thats beautiful, and we love to see, this lifted our hearts immensely.
       That's pretty much the update, also for those of you who rsvpd to the babyshower I had planned for may 21st may realize that I did cancel it. This being because in the small chance we feel she may not make it we didn't want others to feel weird about buying things or anything like that. As soon as she is born and out of her first surgery I will plan another baby shower for those to attend. For now your love and support with prayers is more than enough of a gift to us. As you see the lord is working his mysterious ways and proving that the power of prayer is working.
Saving scarlet efforts to sell the bracelets are still going strong and we appreciate all the help from others. As I hope you can see the baby bump is definitely getting there, with the full out sticking belly button I do enjoy looking the part. Excited to get bigger I await the weeks ahead as we enter the third trimester. We have another ultrasound in two weeks for measurement and another with the cardiologist in four weeks!! :) very exciting. Also going to have professional pictures taken around 8 months looking forward to that as well. There is much more I could share but for now I think that will do. More uplifting news is the blessing of Vincent getting a job, one that will indeed give him time off once scarlet is born. Miracles are in working order and we are very grsatful. Well everyone I should probably get back to babysitting thanks for tuning in. Please let me know any input or questions you may have <3