Shane and I have slowly been trying to learn the basics of HLHS. We want to be educated enough so that when the doctors talk to us, we can really understand what they are saying without having to ask a billion questions about terminology. We don't want the language of heart anatomy to hinder our understanding of the defect as well as the procedures they will use to fix it.
With all of the research I've done, I am in absolute disbelief. This isn't real. I have read that 1 out of 100 children are born with a heart defect, 1 out of 10,000 children are born with HLHS. What are the chances that OUR child would be that 1 in 10,000?
I keep hoping to wake up in the morning, and hear that none of this is happening. I keep waiting to read that HLHS is not as serious as all the rest of the resources say it is. I'm just waiting to hear that OUR baby does not have it. But morning after morning, I wake up and deal with reality.
For as much as I don't want to be in this place with this diagnosis- I don't want to be a mom of a heart baby, don't want my husband to a daddy to or my kids to be siblings of a heart baby, I am in awe that God chose Joshua to go through this trial- chose us as a family to go through this trial. It must say something about Joshua's strength, character, and life- even if it's just begun in my womb. I can't help but think that Joshua's tiny imperfect little heart will bring other hearts to a loving God. I can't help but think that his tiny imperfect heart has already brought at least 2 hearts closer to God- Shane and Mine.
So, yes, I'm still waiting to wake up and be done with all of this. I'm still waiting for our life to go back to "normal." I still feel like the reality I'm living in isn't mine, but a bad dream that I will wake up from soon. But at the same time, I'm thanking God for His goodness. I'm thanking God for His hand in all of this. I'm still praying for a miracle, no matter what that looks like.
My Love
Goofy Caleb
Spunky Hannah
Baby Joshua
Hypoplastic Left Heart Syndrome. Aug. 16, 2010 to Oct. 6, 2010
Our Rainbow Baby, Luke
Luke
Grab One
6 comments:
Hello! My 6-month-old son Chase was born with HLHS. We were diagnosed around 20 weeks and had lots of time to prepare for his arrival. A LOT of that time was spent worrying, questioning, thinking of the "what-ifs" and being consumed with what the future would hold for my family and my son. God was so faithful and saw us through it all! Chase has had his first two surgeries and is doing FANTASTIC! There is such a wide spectrum of HLHS -- some babies have a real rollercoaster ride and struggle with setback after setback, while other babies really thrive and make great progress. Praise God, our sweet boy has been the latter and, honestly, if you didn't see that scar on his chest, you would NOT believe he has a special heart!
Please visit my blog and read through some of what we've experienced. Chase was born Oct. 26th, had his Norwood on Nov. 2nd and his Glenn on Mar. 3rd (that should help you navigate through my archives).
Please know that God did choose you--and your family--as you do have the strength, character, and life to be the very best parents to Joshua and see him through what lies ahead. I know it's scary, but please put your trust in the Lord and allow Him to carry you through your worries and fears.
Please don't hesitate to contact me if you'd like to talk or if you have any questions or if there's ANYTHING I can do for you. Like it or not, you're a "heart mom" now, and we're a tight group who care for each other immensely!
My prayers will be with you, your family and especially little Joshua as you begin this journey.
God bless you!
Kathy
Great Blog, Jill! Yes, you have been chosen for this trial. And yes, you have grown in your relationship with God, and will continue as you walk along side Him.
Praise God for Kathy, a new friend and for the opportunity to join their "Tight Group".
Love you and Bless you. Gramma
we are still praying for precious baby joshua everyday!
Great post. Joshua I special, but how could he be any other way with a big brother like Caleb, a big sister like Hannah, and such great parents. So youare a special mom of a very special little boy. Find the time between your fears to dream of Joshua 15/20 years from now, strong and on fire for God.
Karen, welcome to Jill's family of friends. Congrats to baby chase.
I am keeping baby Joshua and your family in my daily prayers. I don't know if it of any comfort but I grew up with a deaf bother and although it is very different from what your family is going through i really feel that having him as a brother made me a stronger and better person. Because of him I accept all of god's children and appreciate the gift of life.
Also, as a physical therapist i have worked with children and parents who have been through scary diagnoses and surgeries and the families are some of the most amazing people i have ever met. Society sees these children as sick or disabled but from what i have seen the children see life differently - in a wonderful way.
Although it is hard to accept at this moment i truly believe that the experience will only make you stronger and will reinforce that every moment is a gift.
Great post. Love and prayers all the way!
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