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8th Update on Little LJ

Hello Everyone,

We wanted to update you on our doctor’s visits from last week. I’ll try to keep it short and sweet. The visit with the neonatologist was exactly what we thought it would be – she basically ran through what things would look like for LJ from the moment she’s born. She told us about all the tubes, IVs, and medications that LJ will have in her and connected to her. While it’s very surreal thinking about LJ in this condition, we were reminded that babies are very resilient and all they know how to do is fight to survive. Knowing these things ahead of time are helpful so that we can be prepared for what is to come. We know it will be hard at first to see her in this state, but we also know the doctors are doing what’s best for her.

We also met with the cardiologist who did an echocardiogram on her heart (basically an ultrasound focused on her heart). The doctor could not see any defects with her heart through this procedure, which is a great thing. Ben and I have been told all along that her heart looks good, but it was good to be reassured through this procedure. When she’s born it is suggested that she have another echocardiogram to detect minor defects, but we will leave that up to Dr. Kays to decide if he feels she needs it.

That’s the update on last week’s visits. This week we will just have a normal check-up and the following week… we’ll meet LJ!

I want to leave you all with something I like to tell people when I get to talk to them about LJ and this whole experience. When we found out back in June that we were having a girl we named her within 24 hours. We had not discussed names until we knew we were having a girl. Once the naming process started we both began to realize we wanted the name to have meaning. So we picked Lucy Jane. Lucy means “light” and Jane means “God is gracious”. After we found out that LJ has CDH the meaning of her name really began to come to fruition. Through this process LJ has truly been and will be a light to a lot of people.  As well, God has truly been gracious to us. He has walked before us, guided our path, and truly provided all that we have needed through this process with LJ. It’s just another reminder that God has already planned our days and He knows what’s best for us.


Ben, Katie, and Little LJ


  1. Jamie Ashford says:

    Hello Ben, Kathie, and Little LJ,

    I am so glad you are finding comfort from your doctors for the days ahead. Isn’t it wonderful to serve such a Faithful, Loving, Never Ceasing Father. i cannot imagine facing such challenges without the Loving Grace of our Lord and Savior.

    You said it best when you said “God has already planned our days and He knows what’s best for us”. I have often said this along our journey and throughout my blog as a reminder, that ultimately, we are not in control. As believers, it is often challenging to walk solely on Faith. However, when we do, He reassures us He is there.

    Our precious William spent 14 days in the NICU. Although he never has the “tubes” he did have an IV inserted in his tiny little hand (which covered his entire hand and wrist) as well as all the chords used for monitoring. When I first saw him after they took him away after delivery, I fell apart. It was hard seeing him so vulnerable, however, I saw in him a strength I strived to have myself. Each day we would visit him, he was so strong and taught us so much about Faith, Believing, and finding an inner strength we didn’t know we had. I know, when you see LJ, you’ll be overcome by a strength you didn’t know you had. She’s already taught you so much, and she will only teach you so much more.

    Please know you are in our thoughts and prayers in the days and weeks ahead. Please reach out to mom and dad for anything. I know they are anxiously awaiting LJ’s arrival alongside you all.

    With Love,
    Jamie Clark Ashford

  2. Jennifer Tenney says:

    Glad to hear the good news about LJ’s heart!!!!! Lucy Jane, what a beautiful name. Is Dr. Sullivan still the neonatologist there at Shands? She was our neonatologist and I loved her. I really depended on her when we were in NICU II, just trying to get Dakota to eat enough to get home … it was her ideas, suggestion, and faith in us, that got Dakota home without a g-tube. It is sad seeing your baby for the first time covered with tubes. I think Dakota being my first baby, it was easier because I did not know any different. I read so many CDH blogs that I knew what to expect. I made myself expect it, and I saw her beautiful face and body shining through. It becomes your new normal. You will see LJ shining through as well. And then the tubes and wires start leaving one by one and you can celebrate each one! Once LJ is born, if I remember right, they do several echocardiograms at different stages – to check on pulmonary hypertension, and before you all go home, to see if there are any other defects. Dakota had a tiny hole which created a small murmur (which actually helps with pulmonary hypertension in the beginning). Most small holes close by themselves, which is what Dakota’s did within a couple of months of being home. She just had another follow up echocardiogram on her 2 1/2 year old check up- the first time since we left the NICU, and everything looked perfect (despite her freaking out and crying through the whole thing – newborn babies take these things much better =)). Speaking of how well newborn babies endure things so much better, we just had Dakota’s blood taken to enter it in the CDH research study (I think it is important or I wouldn’t have put her through it). They took just a small amount of blood yet she carried on like it was the end of the world and the little stinker refused to get out of her bed the rest of the afternoon! I told her she should have seen what she looked like when she was on ECMO and she battled through that like a warrior! I showed her her newborn pictures again and she happily pointed out that it was baby Coco. She doesn’t know she was supposed to look any different. LOL! She will understand some day but for now, she does not remember any of the wires, tubes, or procedures – just the love!
    Praying for LJ!
    Mom to Dakota 12-25-2008
    RCDH survivor

  3. Jim Ekrut says:

    When I read your pilgrimage through these new experiences, I sense God’s growing, maturing, and enriching your lives. LJ is blessed to have you as parents. When thinking of you, I’m reminded, in a Godly way, of the quote from Star Wars: “The force is strong in this one.”
    God’s grace is greatly strengthening you. Thanks for sharing.

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