Emma Kate had a hard night last night. I don't blame her for screaming her head off. She has had a grand total of two bottles (of yucky Portagen) over the past week! Poor baby! I just wanted to break out the Similac and feed her. I HATE this more than anything! I hate seeing her suffer, its just so pitiful!
This morning, Brooks and I spoke with Dr. Romp, who is the on-call cardiologist, for about 30 minutes or so. We are ready for the next step. Last night was the last straw for me, Brooks and Emma Kate. I think we are headed for surgery. Dr. Romp is calling Atlanta today to get details on when to transport her over (most likely Monday). I imagine we won't know a surgery date until we get to Atlanta.
As far as the surgery is concerned, we aren't sure exactly what they will do. Actually, they aren't exactly sure what they will do to correct this problem until they open her up. There are a few different approaches to treating chylous effusions that I won't get into now, and it isn't certain as to what causes them. There is no right answer at this point.While we are waiting to hear from Atlanta, I thought it would be cool to get to know some of the readers of our blog. I LOVE getting comments on the blog, because one day I am going to show Emma Kate what all she has been through and that SO MANY people are praying for her and getting updates on her. I have a "sitemeter" that tracks the readers of our blog. It tells me where they are in the country, or even in the world. We have readers from all over, including Alabama, Georgia, Kentucky, Virginia, New York, Washington, Texas, Connecticut, North & South Carolina, Oregon, Minnesota, Illinois, Oklahoma, and many more states. There are also readers in Australia and Iceland that are regularly checking! It is amazing to me that the life of my little girl is touching so many.
I would love it if each of you would take a moment to comment. You can do that by clicking on the "comments" link at the bottom of this post. You can leave a note, a prayer or just a quick hello for Emma Kate! Thank you. And it's nice to meet you!
Hello Emma Kate!!!
ReplyDeleteI know you don't know me, but I have been following your journey and praying for you. You are only a handful of days alive on this earth and you have already had to be so brave, so patient, so diligent, and so strong. You have done this with more grace than people who have been around decades and you still smile your unique beautiful smile in all the photos I've seen of you. Your great aunt Teri talks about you like you're an angel.
I'll still pray for you long after all of this is a distant memory because I just know your life means something special. YOU mean something special. Please know that many many people you'll never meet have been inspired by you and wish you every happiness. Emma Kate, many people you'll never meet think you are amazing and we'll always be rooting for you.
Beth Morrell
Auburn, Alabama
We are checking in and praying for the best!
ReplyDeleteAlli
One of your Okie readers...you're story has captured me since she was born. My dear friend's son had HLHS and sadly he passed away totally unexpectedly in November. Stories of HLHS just captivate me and it is amazing to me how all HLHS I've have seen seem to be so so happy no matter what is thrown their way. I pray for Emma Kate everyday along with many others. Iti is amazing to me how I NEVER heard of HLHS until Maddox was born and now I find HLHS babies everywhere on blogger. It definitely deserves FAR more awareness and hopefully we will be starting some kind of foundation soon after she does her speaking engagements. Always in our prayers that figure out what to do exactly and SOON!
ReplyDeleteWe love you sweet baby girl! Keep strong and smiling, God is holding you in His hands!
ReplyDeleteJohn, Stacey, Emily and Ian
We check in regularly from Statesboro! We've met you guys a few times at FBC before you moved, but we've been keeping up since we heard about Emma Kate. We are praying!
ReplyDeleteHello Emma Kate- I work with your Aunt Teri at Auburn University. She is keeping us up to date on your progress. Every day we get to see a new picture of your beautiful smiling face. I am so amazed by your strength. I am praying that the Lord will bless you and keep you safe! Paula Dawson
ReplyDeleteMy sweet baby, Emma Kate (I feel like you're "mine" anyway!) ... who knew that you would be SO popular in Auburn, Alabama! You are asked about daily, and prayed about, too! I send emails almost daily, and told the entire vet school about CHD awareness last week. You are loved, little one, and a special blessing to us all!
ReplyDeleteYour bestest Great-Aunt, Teri!
Emma Kate, Brooks, and Bethany,
ReplyDeleteeverytime I sit down to my computer, I check this blog, and I am always praying for you. Through reading this blog, you have all touched my heart in so many ways. Emma Kate- your beautiful happy smile inspires me(i could write so many things here)!! Bethany- your strength as a mother amazes me!! Brooks- your love for your family is so heart warming.
God's arms are holding you tight right now---feel the hope that only He can give us!
To The Keisler Fam,
ReplyDeleteIt is such an honor to pray for such an amazing family!
Brooks and Bethany, I just love ya'll dearly and am so inspired by the way ya'll have handled all that life has dealt over the past year. You are such AMAZING parents to those two gorgeous little girls. Thanks so much for your faith and for sharing your journey with us.
Anna Brooke, you are a doll, and I know you are just a joy to your mama and daddy - not to mention being the BEST big sister to Emma Kate! What a lucky girl she is to have YOU as a best friend!
And Emma Kate, girlfriend - you are one tough cookie! You have experienced more in your 6 months of life than many people ever will and you have SMILED through the whole thing. I just love you, and I have been so blessed to know you and your family and to watch as God's plan for your life unfolds. I am praying for you, you sweet little thing, and can't wait to see what all God has in store for you. I know He has an amazing life planned for such an amazing little girl!
Love you all and continuing to pray for each of you!
Love, Jenna :-)
Emma Kate,
ReplyDeleteI haven't met you in person, but I feel like I know you so well. You are an amazing baby with an amazing spirit. I pray for you weekly and have been honored to get updates on how you are doing. You are an inspiration to me and my family. Your parents have taught and showed me what it means to be a FOLLOWER of Christ. I love you precious little girl. You are so happy and I pray that God gives you great health and a long life! You will do great things, you already have:)
The jeffcoats
Emma Kate,
ReplyDeleteI hope that I can someday meet you, your precious sister, and your strong mommy and daddy in person - we pray for you guys often and check on your blog daily (sometimes more!). My own little heart baby, Annalee, has opened my eyes to the world of strong little heart babies and all they and their families endure.
Stay strong and happy, sweet girl...
Love,
The Huffs (Molly, Lee & Annalee)
Hi
ReplyDeleteWe are always cecking your blog. It been amazing to follow Emma Kate, she looks like such a happy litle girl :)
My litle girl, María has had one heart surgery and we are going back to Boston in april.
Best regards from Iceland :D
Fríða and María
Happy 6 months birthday Emma Kate! You are a precious little girl that we found through a blog of a blog of a blog, not too long ago...our daughter, Maddie, is a HRHS baby so the two of you together would make 1 whole heart! She's post-Glenn as well. I can empathize with your mommy's every word and worry. Know that you're in our prayers up here in Washington and get well soon!!!
ReplyDeleteLove,
Katie & Maddie
http://allredbabygirl.blogspot.com
Sweet Emma Kate,
ReplyDeleteI met your mommy and daddy when your dad and I worked together at Georgia Southern. We had a great time working together, and after your sister Anna Brooke was born, I had to say goodbye to all three of them, as they moved to Alabama. I was still able to see all of them a few times a year and see your big sister grow up! I have not had the opportunity to meet you yet, sweet girl, but hopefully we will meet you soon!!!
You are such an amazing girl, in just 6 months of life! If people did not know your story, they would never know through pictures that you were hurting so badly inside! You are the happiest baby I have ever seen, and I know that makes your mom and dad smile!
Hang in there kiddo. :) We will continue to pray for you, as we have since before you were born.
We love you,
Amy and Ricky (Raleigh, NC)
Emma Kate, Anna Brooke, Beth and Brooks- We are so blessed by your faith and strength in God. You inspire us to seek after God more faithfully! We love you guys so much and are so thankful that you're part of our family and that we get to share in this journey with you. I'm so excited to see Jackson and Emma Kate grow up together and become great friends. We are so thankful for you!! we are praying for you guys as you seek for answers and we'll miss you as you head back to atl!
ReplyDeleteLove, Uncle Josh, Aunt Erin, and (cousin) baby Jackson
kiesler family -
ReplyDeletei love and admire your steadfast faith in God. it's times like these when people find it so easy to stray, asking 'why us?' in a way that is so negative. it is uplifting to watch as, despite the trials, you all find solice knowing that He will prevail and see you all through these struggles. i love you all!!
love jenifriend(kansas)
Dear Emma Kate,
ReplyDeleteWe crossed paths with your mommy, Bethany, when she was a young girl. We had the opportunity to be stationed at Ft.Bragg, NC and serve alongside your grandparents, Dixie and Lamar, in the Army Chaplaincy ministry. You have a very special family that loves you so much and loves the Lord with their heart and lives.
We know you are in good hands with them and the Lord. We are trusting the Lord with them for your full recovery, day by day. You truly are a precious little blessing already in your young life to so many. We have been following your mommy and daddy's updates and see how God's hand is so powerfully working in you and in them to reach the hearts of those who read your story.
Thank you for sharing your life and your pure, precious, joyful smile and spirit Emma Kate!
May His angels continue to be with you and may His joy and strength heal your body.
Ps. 28:6-8, The Joy of the Lord is my strength!
Love,
the Tarvin family
Bethany, I check Emma Kate's blog daily and am holding you all in my prayers. Much love, Melia
ReplyDeleteI found your blog through another heart mom. My son also has HLHS along with some other birth defects. Just wanted to let you know that we are praying for Emma Kate and your family.
ReplyDeleteHi Emma Kate,
ReplyDeleteJust wanted you to know that I check here for news of you several times a day. You and your family are in my prayers.
Hey Bethany and Emma Kate,
ReplyDeleteThis is Terri Jeffcoat! I am Lindsay's mother in law. I just wanted to let you know that I am a prayer warrior for Emma Kate. I follow your blog very few days and pray for Emma Kate regularly. I pray today for wisdom for the doctors and nurses involved in her care in Atlanta.
Emma Kate,
ReplyDeleteYou do not know me but I know your Great Aunt Teri. She keeps us posted on your condition every day. You are a beautiful baby and so sweet and we all love you here at the Vet School. My Nephew has major heart problems his surgeries started when he was 3 months old and is now 25 years old and he lives a good life, you can too Emma Kate. We are all praying for you to get past the chylous effusions and get home with your mom and dad.
Debbie Watkins
Auburn, AL
We are praying for you guys!!! I'm sorry we've been so bad at keeping in touch, but please know that you are on our minds and hearts regularly. We continue to pray for Emma Kate's healing, as well as strength for all of you as you go through this journey.
ReplyDeleteLove,
Jennifer, David, and Fritz
You dont know me but i happened on your blog by aceident. I have a nephew who has HLHS. He is 8mnths old and has had a very long battle with this but things are turning up for him. I have fallen in love with your little baby she is just soo cute. Your family seems just so wounderfull.: http://www.caringbridge.org/visit/babyrayne
ReplyDeleteThis is his story if you would like to look at it his mom and dad are great people (i am not just saying that cuz they are family but it helps) I am thinking of you guys alot and i pray that every thing works out.
Stephanie Truesdell
Hi, I am a friend of Jenn Tousey. I came upon your site from her blog. I lifted sweet Emma Kate and the family in my prayers today. God is in control and you will see his glory thur this.
ReplyDeleteIn Christian Love, Jackie Moore
Moore, South Carolina
Hi Emma Kate! I am a mommy of two who knows your mommy and daddy from way back in their younger college days! :) I have prayed for you since I first heard about you coming into the world. Your story inspires me. It inspires me to be a better mom and to have a faith like no other. Be proud of your mommy and daddy. They have given your life to God and are trusting in Him to heal you. May you look back on this and see the power of our Lord and how you touched so many people's lives before you ever even spoke a word! We look forward to watching you grow!
ReplyDeleteLove,
The Olliff's, Katie, Greg, Kennedy and Whit