Our heart journey…
July 1, 2007 -Four days old, one day before her first open heart surgery, the Norwood.
December 2007-6 months old, days after her second open heart surgery, the Glenn.
On March 27, 2007 at a routine check-up and ultrasound to determine the gender of our unborn child, my husband and I were told that the tiny baby girl growing in my belly had Hypoplastic Left Heart Syndrome, which, at the time, sounded Greek to us. We walked into the office giddy and excited, but returned home feeling empty, alone and completely terrified.
Hypoplastic Left Heart Syndrome is a congenital heart defect (CHD) in which the left side of the heart doesn’t form completely. We later learned that with this diagnosis, we had three options: 1) Compassionate care, in which our baby girl would be born and given medications to ease her pain and allow her to pass away quickly and quietly 2) terminate the pregnancy, or 3) have a series of three staged surgeries that would not correct her heart defect, but allow her to live. The surgeries were fairly new ground in the medical world and were extremely risky. There was no doubt as to what needed to be done. We prepared ourselves as best we could for the arrival of our baby girl and the long road ahead of us.
Mary Clare Blaylock Pennington was born on June 27, 2007 at the Medical University of South Carolina. I barely got a glance of her chubby cheeks and red pouty lips before they carried her away from me. She immediately needed the team of pediatric cardiologists and specialists far more than needing her mother at that point. Later that night, she was given medications to paralyze her because of complications with another medication to help keep her heart valves open, which was keeping her alive. She was medically induced paralyzed and intubated for 5 days before her first open heart surgery, the Norwood. On July 4th, as fireworks exploded in the night sky outside, our baby’s chest was closed and the long road to recovery began. We were able to bring our sweet baby girl home for the first time on July 20th, finally.
On December 6, 2007 when Mary Clare was 5 months old, we returned to MUSC for her 2nd surgery, the Glenn. She did exceptionally well and was sitting up in her bed laughing and charming the nurses merely 2 days after open-heart surgery! We returned home after only 6 days this go ’round!
We continue to monitor Mary Clare’s heart function and oxygen levels pretty closely as we always will, but she has been doing exceptionally well, and hopefully will be able to engage in most activities that children love. We face a heart catheterization and third surgery in the Spring of 2010, and with God’s grace, she will continue to amaze us with her feisty will to survive and love of life! She is certainly our miracle baby! We are so blessed to have her in our lives and we thank God everyday for every moment He allows us to spend with her.
Our heart journey is documented beginning in December 2006 when we announced the news of our newest bundle of joy…
February 14th, 2008, CHD Awareness Day! (8 months old)
February 14, 2009 (20 months old)
February 14, 2010 (32 months old)
Our HLHS friends…
Emerson
Maddie
Owen
Annabelle’s Baskets
22 Comments
Connie Toole on February 13th, 2009
Hello Pennington Gang, Just wanted to wish the four of you a very Happy Valentine’s Day!!! Really hope we all can get together again soon Hugs and Kisses Connie Toole (Emerson’s Nana)
Connie Toole on March 3rd, 2009
Hello again, love reading about your daily lives!! We relate so well. It’s amazing the thing swe all will say and do to get a laugh from our children or grandchildren!!! Your girls are precious!!! I can’t believe how much Mary Clare and McCanless are like Emerson and Lauren. We have really go to make a special effort to get them together. Erica and Emerson are going with me to Hilton Head tomorrow amd we may stay through the weekend. Call us if you are going that way!!1 Love to all!!! Connie Toole (Emerson’s Nana)
Connie Toole on April 10th, 2009
Hello Pennington Gang!!! Just wanted to wish you a “Happy Easter” Tell big sister to help little sister find some eggs. Emerson likes to find them , but then wants to throw it! Thank goodness when I have hidden them in the house they are plastic. We are all so blesed! Nana (Emerson’s Nana).WE A
Connie Toole on June 12th, 2009
Kerri, I read your update today about Mary Clare turning 2 soon and the joy and fears that come with that!!! I feel the same way> Emerson is growing , eating well , talking, etc., and the devil always tries to steal my joy and tell me to remember that she has another surgery to face. I don’t listen to him though because I know God is in control and I tell people when they ask me if Emerson has to have any more surgeries I tell them that the “Doctor’s say that she will need another one, but we are holding on to our faith and if that is the path God has for us he will see us through it and Miss Emerson will be fine after the next surgery or God may just decide to go ahead and heal her before the surgery!!! Either way , he’s in control and either path he gives us she with have more to praise him for in her testimony.! And the same for Mary Clare) Love you Guys and can’t wait to get together. I’m sure you already know , but Erica is out of town for 2 weeks for work. It was so hard for her to leave Emerson, but I told her I was the next best thing to ” Mom”!!! Hugs and Kisses to all, Connie Toole (Emerson’s Nana
CONNIE TOOLE on July 9th, 2009
HEY MARY CLARE, EMERSON, HER MOM, AND I HAD A FUN TIME AT YOUR BIRTHDAY PARTY!!! YOU ARE GROWING UP SO FAST!!!! EMERSON IS EXICITED ABOUT TURNING2 AND HOPES YOU WILL BE ABLE TO COME TO HERE PARTY!!! HUGS AND KISSES, EMERSON’S NANA
CONNIE TOOLE on July 31st, 2009
Kerri, We had such a great time with all of you at the Beach!!! Hope we can do it again soon. We ought to go down early fall. Let’s plan!! I was reading about the girls sleeping in their beds and laughed. I have twin beds for Lauren and Emerson and I have to lay with Emerson and hang my other arm over to Lauren so she can touch me too. I guess we know how much we are loved, right! Take Care, Connie (Emerson’s Nana)
mom2lo on September 22nd, 2009
What a cutie and what an inspiration! We are preparing for our son Chase’s birth at MUSC in just under 5 weeks. He too was diagnosed with HLHS at our 20-week ultrasound. I am so encouraged that your sweet baby girl spent less than 1 month at MUSC after she was born! We are trusting in God to bring us through this journey and are praying our baby boy is a feisty little trooper!
God bless you and your family!
Connie Toole on October 30th, 2009
Hi Gang!! haven’t talked to you in a while , but I’ve been keeping us through Erica. Glad things went well at MUSC the other day. Praise the Lord!!! Kerry, If I didn’t know better I would say you were one of my daughters all, I will claim you though, But you remind me so much of myself , especially when my girls were young!!! I was always so into evert little thing they said or did and just loved being a mother. My girls now that they are 32 and 36 may say that I still try to be there, maybe too much some times, but I still love them and those grandbabies so much!!! Every time I read your notes about the girls, especially Mary Clare, I tear up!!! Mixed emotions. We are right where you are with Emerson and we feel every thing you are saying and meaning!!! But!!! The good news is that The Lord is in control and we have faith that he is taking care of the two little girls and so many more and they are going to be fine. As I have said before they are going to have awesome testimonies to share years down the road. Hope you have fun for Halloween and hope we all can get together very soon!!!! Hugs and Kisses!!! Connie Toole (Emerson’s Nana, Erica’s Mom)
Connie Toole on October 30th, 2009
Hi Gang!! haven’t talked to you in a while , but I’ve been keeping up through Erica. Glad things went well at MUSC the other day. Praise the Lord!!! Kerry, If I didn’t know better I would say you were one of my daughters , I will claim you though, But you remind me so much of myself , especially when my girls were young!!! I was always so into every little thing they said or did and just loved being a mother. My girls now that they are 32 and 36 may say that I still try to be there, maybe too much some times, but I still love them and those grandbabies so much!!! Every time I read your notes about the girls, especially Mary Clare, I tear up!!! Mixed emotions. We are right where you are with Emerson and we feel every thing you are saying and meaning!!! But!!! The good news is that The Lord is in control and we have faith that he is taking care of the two little girls and so many more and they are going to be fine. As I have said before they are going to have awesome testimonies to share years down the road. Hope you have fun for Halloween and hope we all can get together very soon!!!! Hugs and Kisses!!! Connie Toole (Emerson’s Nana, Erica’s Mom)
Tammy on November 4th, 2009
Hi Pennington Family! I found your site through Steve’s Adventures of a Funky Heart. I have caught myself up to date and wanted to thank you so much for your blog. We too have been blessed with a special heart but never brought ourselves to connect with others through the internet until now. I am the mother of a very special 2 1/2 year old boy with HLHS. My husband and I live in Charleston (Daniel Island/Cainhoy area). Your blog has allowed me to relive our heart journey but not feel isolated. This past summer, I was connected with a new HLHS family in Charleston, a baby girl. I have recently been browsing various blogs and have found a whole internet world of HLHS families. Each childs diagnosis is similar but very special in their own way. I just wanted to thank you for opening up to those you know and those of us you don’t. OH, by the way, CONGRATULATIONS on the win!
TNMcCanlesses on November 6th, 2009
Hello just ran into your site searching McCanless on Google. Can you please tell how you came to choose McCanless as the first name for your little girl. We are a McCanless Family that lives in Middle TN near Nashville, TN. Loved reading your blog info. Hope you don’t mind the question. Thanks, B J & Robin Carol McCanless
hopesnana on December 26th, 2009
The blog of debmacministries posted a prayer request from my daughter Jalene Matthews.At her 20 week ultrasound her daughter was diagnosed with HLHS.Her unborn baby is named Hope.{I am Hope’s nana} Her baby is due on May6 2010. Could you please provide info on where the surgeries are actually performed? We live in a very remote area by the coast of Maine. ANY and ALL INFO would be most appreciated. We got the news six days ago…Thank you so much for your blog…and may God bless.
Connie Toole on January 1st, 2010
sounds like you guys had a Merry Christmas and a Happy New Year!!! Hate we didn’t get to get together, hopefully soon. Lauren was sad, she was hoping to see McCanless and Emerson wanted to see “Mary Care” Love to all Connie Toole
Jackie Butler Nolan on March 2nd, 2010
Hi Kerri and Mel, before I even began reading your journal I felt such a connection with the two of you. I am the very proud Mom of an almost 30 year old son who was also born with HLHS. Mel, you met him about a week ago in Hartsville. He’s a paramedic working part=time in Hartsville. His name is Brandon Butler and he is the oldest survivor of this particular heart defect. He also goes to MUSC for his cardiology checkups. Just wanted you guys to know that there is a Mom out here who knows exactly what you are going through. The first seven years were awfully hard but God has been so good. Thankfully Brandon has had only minor problems in the past 22 years. His Fontan was done at the Mayo Clinic in Minnesota in 1986 and we spent approximately 6 weeks there. His surgery went great…no problems at all. I’m sure that Mary Clare will be just fine. She is such a precious little girl. Kerri,I would love for you to meet Brandon and see “my miracle”. One thing these children have is the drive to pack everything into life that they can. Brandon never stops! He’s a full-time paramedic with Marlboro County Rescue, part-time with Darco and Scotland County and also helps a friend of his in Horry County with his transport service. I’d like for him to rest some but that’s totally out of the question! Another connection we have is Kay and Don Rowe. Kay is my sister. If you ever have an questions or just need to talk please feel free to contact me. My number is 843-862-3600. My thoughts and prayers are with you all.
If anyone else reading this blog needs someone to talk to or just to see that there is a light at the end of this long tunnel, please don’t hestitate to call.
Jackie Butler Nolan
heather (asher's mom) on April 24th, 2010
i’ve been following your blog since you found me a few months back, and i just have one question for you…
where’d you get the name Blaylock?
heather (asher's mom) on April 25th, 2010
the reason i asked about “blaylock” was this:
the B in “B-T shunt” (which she would have had for the norwood) is for Blalock. same name, but without the y. just found it a bit ironic that you gave her that name, but if it’s a family name, that makes sense. 
Connie Toole on May 6th, 2010
Hi!! Girls and Mr. Mayor, Miss you guys so much!!! Think of you often and try to look at your web page when I can. Boy the girls are growing up too fast. Emerson is too, and keeps us in stitches laughing all the time with something she says or does. Erica keeps me posted about Mary Clare. I know yal are like us we dread it, but this is the path God has allowed for both of our girls so we just have to hang on to our faith and know he is the great physician and he is in control and they will be fine. Connie Toole (Emerson’s Nana)
Connie Toole on May 31st, 2010
Happy Memorial Day!!! Sounds like plans for the day were altered due to the weather like all of us!! I wonder if maybe God just allowed this weather so we would all just stay home and get some much needed things done, have some family time at home, and get some rest. What you think? Hope to see you guys at Mary Clares Birthday Party! Wow!!! Can you believe that she and Emerson will be 3 soon! I pray that these two girls stay in contact and close as they get older!! God has already blessed them both so much!!! Praise his name!!!!! Love, Connie Toole(Emerson’s Nana)
Connie Toole on June 30th, 2010
Great to see all of you at Mary Clare’s party! Hope yal can come to Emerson’s in August. Connie Toole (Emerson’s Nana)
I had a great time at Mary Clare’s party!!! It was so good to see all of you. I wish we could all get together more often, but I know everyone is so busy!! We probably all need to pray about how busy we are and make more time for important things like getting the girls together more . Hope yal can come to Emerson’s party in August. Maybe yal can plan to stay over night. Love all of you and keep you in our prayers Connie Toole (Emerson’s Nana)
Lauren Way on July 2nd, 2010
Hi Kerri:
I just wanted to let you know how happy it makes me to see Mary Clare thriving! She is precious, and so is McCanless.
Please know that everyone that the Red Cross is thinking of and praying for your family as your heart journey continues!
connie toole on August 25th, 2010
So good to see you guys at Emerson’s 3rd birthday party. Erica posted a picture of Mary Clare and Emerson sitting together . I wrote under the picture about how you and Erica support each other and that as the girls get a little older I pray they realize the special bond they have and they remain close throughout lifeand can support each other. Tell Mel and McCanless we missed them and hope to see them soon. Love to all, Connie Toole (Emerson’s Nana)
bethany on January 18th, 2009
hi kerri!
i saw your comment on gracie’s blog and thought i would check your site out. i try to get in touch with other families affected by HLHS as much as i can. my daughter is emma kate. she’s almost 5 months old and was diagnosed in utero with HLHS. her glenn is this coming wednesday. it is so encouraging to see other babies do so well after the glenn! thanks for your info and for sharing mary clare’s story!
-bethany