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…

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…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

Earning My Title – The Rewrite

As you may know, I started to write a blog about a week ago. And I deleted it because it was all kinds of depressing.

The jist was that I was feeling very down on myself for not being Abby’s primary care giver. Still struggling with the whole, “I’m the mom, but I have to ask someone else how my baby is each day” thing. Not gonna lie – this whole journey has been tough. Tougher than I could have ever imagined. And while Abby is just soaring 95% of the time, I’ve come to learn that no amount of good news or 2 hour visits will fill the void both Anthony and I feel. We have a hole in our hearts. We have a ginormous gaping hole in our lives.

I wrote that we require distraction from every hour of our day away from her. Anthony has filled his hours with work (bringing it home on occasion just to have something to do) and his newest video game where he blasts aliens all night long. I, too, needed something. My tastes just change more frequently. First it was nesting – I actually did Abby’s laundry multiple times (even when she’s never worn these clothes!) just to feel like I was doing “Mom” things. When the logical side of me finally stepped in and said – “Uh, Jen… stop washing clean clothes before you ruin them and she doesn’t ever get to wear them,” I moved on to a different kind of nesting. I spent countless hours in her room, rearranging things that still have no real home in there yet. I found myself switching batteries in toys that have never even been turned on, just to have something to do. I spent an ENTIRE day cleaning her bathroom, of all things. I just felt like if I was in “her” space, that I was somehow closer to her. When that stopped working, it changed again. I cannot tell you the HOURS upon hours that have been gobbled up by Facebook, twitter, sites about preemies, other people’s blogs, and even my own blog. The time has been absolutely swallowed by these distractions. And they are totally necessary.

For example, neither Anthony or I can sit in the quiet anymore. We crave noise. I think, psychologically, it is because we associate being new parents with noise – baby cries, baby toys, family around us, etc. But none of those noises exist the way we expected them to. So we fill the house with noise. The TV gets left on, just so it isn’t quiet – we aren’t watching it, tho. Anthony plays his games with the sound on, which is a change for him. I have the sound on my computer switched on, which is also not “the norm.”

I was writing about all of these things we were doing that are out of habit for us, but I was also writing about my struggles – the biggest of which is that I didn’t really feel like a Mom yet. I named the first post “Earning My Title” in a very resentful way. I felt like I needed to prove I was worthy of the title of “Mom” because I’m not really doing “Mom” things day in and day out. I was going to tell you about the times we get to change her diaper or her clothes. I was going to tell you about my first explosive poop clean up and the first bath we got to witness. I was going to tell you about Non-Nutritive breast-feeding and spew more info on her numbers and conditions, all as a way to “prove” that I’d earned my title of “Mom.”

I know, now, that this was just silly. And honestly, it wasn’t even Anthony this time who helped me realize it. It was a collective effort from one of the most amazing group of women I have EVER been blessed enough to know, and they don’t even know they’ve done this for me.

I’m talking about all of Abby’s Moms. That is right – I’m not the only one. I’m the #1, but there are at least 27 other Moms (actually, 26 and 1 extra Daddy) for Abby. I’m talking about the AMAZING staff in the Los Robles NICU.

Over time, and especially in the last couple of days, these ladies (and Zack!) have helped me realize 2 things. 1) I’m her Mommy no matter what – I don’t have to EARN that title. I did that on June 2nd by doing what it took to get her into this world alive. And 2) It truly does take a village.

In a blog all its own, I hope to introduce you to as many of these people as possible. But today’s focus is really not about them. It’s about me and the lesson they’ve taught me. The lesson is that it’s ok. All of it. The highs that soar, the lows that depress us, the reactions both good and bad, the joy, the anger, the frustration and confusion – all of it. IT’S OK!!!

I got a very wise piece of advice from a NICU mom that reached out to me when we first arrived. She said she got this advice from some of these same nurses. She was about a month away from taking home her son (he was a 25 weeker). Turns out, this is her second preemie. Second round in the NICU. Second time facing all of this. Needless to say, she’s a pro. She took me under her wing. And this piece of advice she offered was that I needed to understand, right away, that very few people are going to truly understand what we are going through. She said that while every baby has their story, ours are truly unique. She laughed and said while she didn’t want to undermine any mom with a traumatic experience, I needed to know that, no – the Mom whose baby was in here for observation for 48 hours doesn’t get it. The Mom whose baby was in the NICU for the average 10-day stay doesn’t get it. Even the Mom who’s babies are preemies and have extended stays don’t get it. Only a handful of us are sentenced with a 90+ day stay in the NICU. Only a handful are born “Micro.” Only a handful of us understand exactly what it is like to raise a child that shouldn’t even be alive. And only that handful “gets it.” Well… them, and the nurses, of course.

I call Abby’s nurses “My” nurses. I claim them all. MINE. I have actually become very territorial with my nurses, too. Which, over time has gotten hard because there are so many, and they are all so good!!! Sometimes I wish that all of my favorite nurses could have Abby all at once!! You know, 5 or 6 of them just hanging out around her pod. But I digress. My nurses have been so supportive. They have been so helpful – both medically and emotionally. They have really gotten to know us, and they pay attention!!! I went back to work this week, and while I only told a couple of them it was happening, I have been asked by EVERY SINGLE nurse I’ve encountered over the last week how work was going. They just care, with all their hearts.

Her nurses have taught me everything I know about being a Mom. They taught me the right way to change a diaper. They taught me how to feed my baby. They taught me how to hold her and how to carry her. They taught me how to bathe her, change her clothes, swaddle her, etc. And they’ve taught me how to asses her conditions. I’m a pro at knowing exactly what is going on with Abby, and it is because all of them have taken the time to answer my questions and teach me. But the best thing they taught me was that every uncertainty I have, every bump we’ve gone over, every wall we face – it’s ok.

No one understands like they do. No offense to anyone who has tried to tell me that everything will be ok… but I hate hearing that sometimes. This is going to sound a little snobby, but you have no idea. And there were moments when both Anthony and I decided not to say anything to anyone, including our parents… because we did not, under any circumstances what to hear, “It’s all going to be ok.” Because the truth was, it might not. And that was reality. Our nurses get that. They know just what to say, and sometimes more importantly, what NOT to say.

When Abby got sick with that GI infection, it was horrible. Babies die from things like that. And her nurse that first night knew not to say, “Don’t worry, it’s going to be ok.” She was real with us. She was honest with us. And she looked us both straight in the eye and said, “We are going to do EVERYTHING in our power to make her better.” That was the one and only thing we needed to hear.

My nurses tell me all the time that it is ok to cry. And I have. I’ve shed more tears in that room that I ever thought humanly possible. And not just for Abby – for all of those babies. We lost 2 angels in July, and it hit everyone hard. The nurses carry that weight for every one we lose because even when nothing more can be done, they still try. It’s amazing the heart these people have. It has touched me deeply.

Anywho – the point of all this is that I’ve learned that I don’t have anything to prove. It’s ok that someone had to teach me how to care for Abby. There is nothing wrong with getting the kind of training we’ve gotten, and I’m no less of a Mom for needing the help. I also know now that it’s ok to be upset. My daughter almost didn’t exist. My daughter has stared death in the face. My daughter has had ups and downs and it is ok that Anthony and I feel all that for her, emotionally. It’s our job. It’s my job to worry about her. It’s my job to cry for her. It’s my job to be scared when something is wrong, and exhilarated when she’s doing well. It took me a while to figure it out, but I’m no less her Mommy now than I ever was or ever will be. And I don’t need “Mom Badges” to prove it. Abby proves it, everyday, for me. I’m her Mommy. Anthony is her Daddy. And as much as all of her nurses love my little girl, they want nothing more than to send her out that door. And its ok for us to want to leave them all behind.

To wrap this one up, I’ve included a story/poem that my best friend, Beckie, sent to me the day after Abby was born. Beckie couldn’t be with me due to distance, but she sent her love in her own way. She told me in an email with this story attached that it really resonated with her and that she thought that it described me very well (minus the part about not believing in God, because that was just silly). She said I had many of the same traits the woman in the story had. While I didn’t read it for quite some time after Abby was born, when I did I couldn’t help but be overwhelmed with a sense of both gratitude and pride. I was so grateful that someone who knows me so well thinks so highly of me, and I was so overwhelmed that someone thinks that I’m worthy of all that. But, as time has gone on, I’ve realized she was right. It takes some seriously special (or maybe just crazy) people to handle what we’ve handled. And while I’m not really all that into tooting my own horn, I am proud of what Anthony and I have accomplished so far. So, to all my other NICU Moms (*cough* Janelle * cough*) this is for you. Because sometimes we need to realize that we actually are special. We need to hear that there is a reason for all of this. And we need to come to terms with the fact that, even if we face the worst of the worst, God would not give us something we could not handle. Everything will end up ok.

-Jen

How Preemie Moms Are Choosen
Adapted from Erma Bombeck

Did you ever wonder how the mothers of premature babies are chosen? Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. “Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint … give her Gerard. He’s used to profanity.” Finally, he passes a name to an angel and smiles. “Give her a preemie.”

The angel is curious. “Why this one, God? She’s so happy.”

“Exactly,” smiles God. “Could I give a premature baby a mother who knows no laughter? That would be cruel.”

“But does she have the patience?” asks the angel.

“I don’t want her to have too much patience, or she’ll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she’ll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I’m going to give her has a world of its own. She has to make it live in her world, and that’s not going to be easy.”

“But Lord, I don’t think she even believes in you.”

God smiles. “No matter, I can fix that. This one is perfect. She has just the right amount of selfishness.”

The angel gasps, “Selfishness?! Is that a virtue?”

God nods. “If she can’t separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says ‘mama’ for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side.”

“And what about her Patron Saint?” asks the angel, his pen poised in the air. God smiles.

“A mirror will suffice.”

Re-Do

I’ve spent the last week writing a post. I wasn’t done yet. And I just deleted it.

Yup – did it on purpose and everything.

The blog was negative. It was sad and depressing and it was making me moody and a meanie-head to Anthony.

The blog was about how hard this journey has been. And while I’m not going to say I figured it all out and I’m fine now (cause that would just be about the craziest lie I’d ever come up with), I can say I got some perspective.

I did it again… I had a meltdown. Seems to happen quite a lot these days. I snapped at Anthony and for once he snapped back. I’d laid the straw that broke the camel’s back. He finally got irritated enough to say something, and I lost it. Poor guy – he didn’t deserve that.

I told him I wasn’t mad at him at all and that I was just struggling with all of this (complete with crazy-ninja-hand-movements that indicated the encompassing of my entire world). He pulled me in tight and said he knew. He’s going through it, too. He asked me to be strong. He said, “Gorgeous (yes, he actually calls me that), don’t fall apart on me now. I can’t fix this one with duct tape.” As always, he makes me laugh even at my worst moments.

We talked it out. And while I’m not at all near being ok, I’m better. I forget I’m not walking this alone. I need to remember it more often. And I need to remember that Anthony needs me just as much as I need him.

So, I will re-write. I have a lot to say about this crazy start to Abby’s amazing life. And not all of it is positive. But the end result is, and I need that to be my focus.

For now, just know that Abby is doing amazingly well. She is not just beating the odds, she’s defying them. Kicking ass and taking names, quite frankly. She is a whopping 3 pounds and 11.2 ounces as of her weigh in tonight (Monday). Today, she took an entire feeding from a bottle for the first time. And she accomplished the task in 25 minutes (a record for her). And then, she digested every last drop before her next feeding. This girl is coming home, come hell or high water and nothing is going to stand in her way. I’m so ridiculously proud. Proud in the way only a Mom can feel.

Thanks for reading, and thanks for being patient as I re-write my latest post.

-Jen