Roller Coasters used to be fun

They call the “ups and downs” of this journey a roller coaster.

Well, friends – I’m a roller coaster fanatic. If there is a roller coaster to be ridden then I am on it! Hands in the air, eyes wide open, staring zero-G in the face. I know my roller coasters. My favorites include Screamin’ California at DCA, the Rockin’ Roller Coaster at WDW, Revolution, Tatsu, and Goliath at Magic Mountain, and (of course) Space Mountain at the Magic Kingdom. I’ll try any roller coaster (no matter how high, how fast, or how many loops) at least once! But there is one catch: The coaster can only go in one direction: Forward. I can’t do backwards roller coasters. I can’t see where I am going and that freaks me out. Free falling backwards makes me feel very out of control because I don’t know what is coming next. If I can’t see the curves up ahead, I can’t prepare myself for that curve. Changing directions at those speeds makes me want to vomit.

So for me, “Roller Coaster” was the PERFECT way to describe the last 2 and a half months of my life. I have been riding a roller coaster and I can’t tell you how much I want to get off!!! This roller coaster sometimes takes turns and spins that I can handle, but then, out of no where, it changes directions on me and goes the complete opposite way. It makes my stomach drop out of my body.

Sometimes this ride has been so surreal. I keep having good news! And I can only try to explain how amazing that is. For example: Abby is now 11 weeks old, and only 35 weeks gestation. I know of several other babies who went home with oxygen assistance for MONTHS even though they were born later in gestation than she was. But Abby hasn’t been connected to oxygen tubes for weeks, and is doing just fine without them. Most babies like Abby can barely grasp the concept of “latching on” at 32 weeks gestation (the earliest they allow a preemie to try) but Abby was ready and raring to go. She succeeded on her first try and has been successful ever since. And her weight gain is chugging along at an average of 1 ounce of growth per day.

But just when we think everything couldn’t be better, once again the realities of being this premature darken our door. Abby was diagnosed with ROP on Monday. That stands for Retinopathy of Prematurity. The best I can describe it is that the blood vessels in her eyes didn’t get a chance to develop properly before they started getting used. So because of this, it is effecting Abby’s vision via her retinas. She is in what they call “Zone one” which is the lowest advancement you can be in. I guess that is good news. Kind of the like whole “No bleed in the brain going to small bleed, but still great news” thing… kind of backwards, but that is how these things work apparently. The other good news is that she is in Stage 3 of maturity, meaning her eyes are in the furthest stage along they can be before becoming “full term.” So her chances of this being no big deal are pretty high, which is what we are praying for. BUT we are all of a sudden at a much higher risk for vision problems for Abby. If we go to Zone 2, we start talking about corrective surgery for her eyes… as in soon! Laser surgery? On my poor little angel? You’ve got to be kidding me! And if that doesn’t work and we somehow progress to Zone 3? Yea – that means the chances for her going blind very quickly are highly likely. Well @#$%^&!

Anthony and I try so hard not to be over dramatic about stuff like this. The truth is that RIGHT NOW there is nothing really to worry about, and there is nothing we can do. But Hello? We are new parents! Parents of a very fragile child! Worry is currently our middle name! I find comfort in knowing that many babies get the same diagnosis and nothing ever comes of it. But the smart ass in me hears my cynical voice in my head saying, “yea, but it had to happen to SOMEONE for them to make you sign that stupid paper saying you know its a risk, right?” Ugh…

___________________________________________________________

…That is where I stopped writing this blog yesterday. Can you tell I wasn’t in a good place? But I’ve decided I’m not going to finish. The Roller Coaster has taken yet another turn…but this time for the better, and I’m in a good place right now.

All I can (or will) tell you is that Abby is doing VERY well. Her Doctors are starting to make projections about when she will come home, and it is sooner than we anticipated. I’m not going to broadcast dates. Sorry peeps – its private, and 1) I don’t want to jinx it and 2) it is subject to change (and already has a couple of times) at a moment’s notice so what I write today will probably change tomorrow. The point is that there is a light at the end of the tunnel and we can finally see it. Please say a prayer for us that the roller coaster is making its final coast into the terminal and has no more surprise turns before the end. We are so ready to disembark!

Thanks everyone!

-Jen

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10 thoughts on “Roller Coasters used to be fun

  1. Kristen Routh says:

    Beautifully captured emotion. Prayers and love to you and the family. One day, your little one will be giggling and screaming in delight in the roller coaster seat next to you! Her first frozen lemonade is on me!

    • Thanks Kristen! I hope she’ll like them the way Anthony and I do! They are so much more fun than this one we are on. 😉 I’ll take you up on that lemonade in about 5 years.

  2. I am simply in awe of your strength through this journey. I hope that you keep these blog entries in hard copy for Abby to see some day because I think her knowing how much she is loved (not that she won’t know but you know what I mean) will mean a lot to her when she’s older. Thank you for sharing all that you have and letting us in on the journey. Can’t wait til your little family gets to be complete and you get to wake up in the middle of the night like a normal new parent 🙂 My thoughts are with you, Anthony and Abby as she continues to grow.

  3. Judy Baity says:

    You are human. You are blessed to have the love of a strong family. This is part of life. We support you on this journey.

  4. Susan Bek says:

    Jen, you are such an amazing mommy! You have mastered the biggest mommy challenge, learning to ride the roller coaster with faith and hope and no matter what happens, to hold on and love our children through it. This is my prayer for you tonight:

    O God, the strength of the weak and the comfort of those who suffer: Hear our prayers and grant this family the power of your grace, that Abby’s challenges may be turned into health, and our anxiousness into joy; for Jesus Christ’s sake. Amen.

    May things calm down soon so that you can enjoy some smooth sailing while you all recover from this amazingly challenging journey.

    Blessings on you and your family today and always.

  5. David Jay says:

    I cannot imagine what you’re going through, but you write so vividly that I feel as if I am living it with you. I dislike roller coasters; I don’t know one I’d want to ride on, but you’re a much braver soul and you are taking every coaster as it comes.

    The best I can offer is a willingness to read and say all three of you are obviously mighty strong, and that strength will pull you through whatever lies ahead. My prayers continue. David

  6. Hi Kristen,
    Though I was not at your wedding, I know your Dad Chris and Mom Michelle quite well and we believe that God has a plan for Abby. Leave her in His hands. He is utterly and completely trustworthy. Never leave go of His hand. Prayers and Blessings from Linda

  7. Nancy says:

    I borrowed this from another mother’s blog about her little girl who is quite ill. When I read this it made me think of you:

    A very heartbreaking reality for the families who are faced with it. Some days this weighs heavier than others. I have to continuously remind myself that these kids are made in the image of God. He has numbered the hairs on their heads and ordained the number of their days. They aren’t statistics. Statistics merely help us to guess as to the probability of something. But God will ordain our daughters days here on earth. A very true, but at times not easy, truth to live by.

  8. Julie Mazer says:

    Jen–Your blog(sent to my by my old friend, your dad)is always the first thing I look for in my emails. I loved the suggestion your one friend had about putting all this down for Abby to one day read…The love that fills her life is overflowing and I am in turn filled with the sense that this remakable little earth angel has a special purpose here. Look how many lives she has already touched–much like her incredible mom. I’ve never met you, Jen, but I love you! Like your dad, you really are something. Thanks for givng us all the gift of sharing what’s in your intelligent mind and warm heart. XO JULIE

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