Sunday, June 6, 2010


I've really struggled with posting this photo. Every time I look at it (it's sitting on our dresser in a frame) I burst into tears and then automatically praise God for how far he has brought June Claire. This picture was taken the day she was born. The NICU transport team that traveled to the hospital we delivered in took it and gave it to me, because they did not really know if I would ever see her alive again. As you can see in this picture, she looks absolutely terrible. So, so sick. But still beautiful to me. :) This is visual proof of her progress -- she has gone from THIS:

to THIS:

Isn't she so beautiful with her eyes open? She has such big eyes, just like Sara. She still has a bit of growing to do, though, to catch up to those huge peepers. :)

I apologize for the lack of activity the psat week or so -- there's just not been a whole lot to update on, and I've been struggling while I've read blogs and lurked online, I haven't done a lot of communicating. Things just seem to be catching up to me this week. I have been here six weeks and I'm ready to get back my own bed...washing my own dishes...doing laundry...dusting...decorating...complaining about the dog on the furniture and how many times I have to pick Michael's glass up off the desk. I will never take those things for granted again. Now, I'm not saying that staying in the RMH is horrible -- it's been a HUGE blessing and the people here are wonderful!

I have a few prayer request for you. My cousin, Britni, had her first child, adorable Hadlei Grace, last week. Hadlei was diagnosed in the womb with Hypoplastic Left Heart Syndrome. HLFS is basically where the heart is more towards the right part of the chest versus the left, and it only developed halfway. Well, when she was born, they found out she did not have HLHS but instead has Heterotaxy Syndrome. Not familiar with it? I wasn't either. Heterotaxy Syndrome only affects 4 in 1 million babies, and each case is different -- there are no two the same, EVER. Hadlei is in very serious, critical condition. Her heart did indeed only develop halfway, but it also produced too many veins, and the doctors cannot tell where they are going. She was born with her small intestine twisted upside down, her liver is on the opposite side of her body, and she is missing her spleen. Missing a spleen is something extremely serious -- it means you have no immune system. She is scheduled for her first open heart surgery on Tuesday morning at 8:00 AM. PLEASE, please pray for Hadlei as much as you can and spread the word to any other prayer warriors you know of. Britni is a single mama, she'll be 24 this month and this is her very first little one. Think about how ya'll would feel if it were your baby. This surgery on Tuesday will be to attempt to fix the two PDA's (her body produced two, there is usually just one -- and if you remember, June Claire was born with hers open and we needed it to close; they needed Hadlei's to stay open) because something about the veins were not fused. This is a very big, very serious, very delicate surgery. They will be leaving her "open", in that they'll just be using some type of glue on her chest instead of staples, so they don't have to completely re-open her for the next surgery.

Part of what makes Hadlei's condition so devestating is that she is the perfect picture of beauty and health on the outside, but her organs on the inside are so sad. :( But you know what -- God creates each and every one of us perfectly PERFECT, according to His will! Each way that her organs are turned wrong, or developed wrong, etc....He did it ALL with his own hands. He placed them just so!

There is NO doubt WHATSOEVER in my mind that God blessed my family with these two situations at the same time. NO DOUBT. He is preparing our hearts for a great and mighty move and I can't WAIT to see what's in store!

(If I explained Hadlei's condition wrong; someone in my family please feel free to correct me. My little ole Southern brain has a hard time digesting all that info!)


Christy said...

Sweet Stephanie girl, My heart is with you and your family. The outlook you have on these situations shows what amazing faith you have. You are right we are each fearfully and wonderfully made. Our God is good all the time and his plans are always perfect. Our answer to his should always be YES AND AMEN! Praying for Hadlei and June Claire for God's wisdom, guidence and grace to abundantly flows through each of their lives and the lives of those they touch.

HappyascanB said...

Oh, how June Claire has grown! She is so beautiful! I love it! God has surely been with you! Praying, too for Hadlei. What a precious little girl she is.....

His Jules said...

Oh Stephanie - I am so in awe of you and this blog - I had no idea you even had a blog but to see you sharing Jesus here and telling of all the wonderful things He has done! WoW, I know God must be beaming with pride over you!!! I love you and can't wait until you are home so we can see that precious baby! We are all praying for Hadleigh.

Deanna said...

I stopped by from your comment on Kelly's Korner. I'm from North AL, and I was interested in checking out a "neighbor's" blog! Those pictures are amazing...your little girl has come so far in just a few weeks. I hope she continues to progress quickly, and I'll be praying for both of those sweet little ones. : )

delliem said...

What beautiful little angels!! I will be praying for both of them and your families. It is amazing what miracles the drs. can perform today and no one can know better than I do. I have one of those miracles. My GS Colton was born with no spleen and hypoplastic left heart syndrome. He died twice and was brought back both times ;he will be celebrating his first b'day next month and if asked when he was born he was not expected to make it through his first surgery at two weeks old.All I can say is have lots of faith and trust in your surgeon. You are absolutely correct when you say no spleen is serious; we had to basically keep Colton at home throughout the winter.He could not go out in public at all for fear he would catch something.After his surgeries we were told even the flu or a common cold could kill him. It was very scary but we made it through and I would not hesitate to go through it all over again. We are now homeschooling the older brother so he won't bring any germs home to him from the public school system. But it has all been worth it and it will work out for your cousin's baby too.ANOTHER THING TO REMEMBER IS THAT ONCE HADLEI TURNS A YR. OLD THE LIVER WILL PICK UP AND DO SOME OF THE WORK THAT THE SPLEEN WOULD HAVE DONE.Good luck to you all and you will be in my prayers,Dellie