Busy IRL (In Real Life)

I remember the early days of chatting when people talked about their "real" lives, and we referred to it as IRL. Do people do that anymore? I haven't chatted in forever.

Anyway, Angie over at Not in Kansas has been posting some good stuff. I was particularly struck by something she wrote in this post (it's a short post, so worth the few minutes it takes to read):

"It’s like this (as an example): If I want to be a person who has clean baseboards, I have to come to a DEEP realization that they’re not going to magically get (or stay) clean! SOMEONE has to clean them, and have a plan for WHEN and HOW they’re going to be cleaned."

In the comments section, I told her that we must be living parallel lives, because I'm in the same boat.

Last week, I began my Spring Cleaning. Not an easy feat with two little "helpers" running around, but slowly but surely, I'm getting there. Last week, I focused on the kitchen. I washed walls and cabinets. I cleaned out old medicine that had expired. I still have a few little projects, one being cleaning out the fridge, that didn't get finished because I was out of commission thanks to a mild migraine.

I also have half of the TV/Play room's walls wiped down, but that room needs some intense, deep cleaning, as it's where we spend the majority of our time. Toys need to be gone through and purged. Everything needs to be dusted and I need another package of Magic Eraser to get some scuffs and crayon markings off the walls.

Last night, I watched "Clean House" on the Style Network to inspire me. Nothing gets me inspired to clean and purge like that show! Wowza!

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Apart from the cleaning, other things have been keeping us busy. Abbie had her yearly check-ups in Cincinnati a couple of weeks ago. Everything is great! Praise God! I tell you, I'm just so thankful what He has done in her life. When I think of what might have been and what is, it's just overwhelming.

Also, my oldest "baby" graduated from preschool this week. Having helped in the planning, setting up and tearing down of the reception, I am pretty much worn out. I also have a pretty good idea of how it will be when she's in school and how few parents want to help with stuff. While I realize that everyone is busy and short on money, if we all did a little bit, the burden wouldn't fall on a few. A mom can hope, can't she?

So, here's to cleaning and purging! And a wonderful summer before the official First Day of School! I hope everyone is finding something to enjoy.

As soon as I can, I'll write more... 'till then, enjoy an iced tea or lemonade!

Busy Bees

Silence means we're busy. Last week, my dad had surgery. We went to Cincinnati during the coldest week of the winter for a follow-up/check-up appointment for Abbie. All went well.

While we were in the hospital, the thing that stood out to me was the smell. To me, Cincy Children's will always smell like the antibacterial soap used so often there.

I went to the NICU to visit some friends we made while there, Abbie's speech and occupational therapists. I scrubbed in at the sink the same way I did for 25 days and went to the check-in desk. Neither lady was there, which was disappointing, but given that we didn't get out of the ortho clinic until 5:30 on a Friday evening, I wasn't surprised.

As we made our way to the concourse, I cupped my hands and took in a deep breath. That smell will always represent CCH and our stay in the NICU. It will always remind me of my baby fighting, being strong and defying the odds, of the every day hope that soon we would go home, of those few times I was actually able to nurse my baby, if only for comfort. Those few nursing sessions were comforting for both of us, but probably more for me because there's not a better way in the world to bond and snuggle with a new one than to feed them mother's milk.

This trip was different because it was the first trip back during which Abbie could walk. What a different experience it was! She could play, too. Like her big sister, she could explore and check things out.

My heart was warm, full and overflowing with gratitude as we made our way out into the bitter cold.

Getting Abbie Home, Part 2

Through the month of July, I wasn’t good for much. I got up each day, went to work, came home and laid on my left side all evening. My blood pressure was already beginning to creep up, but I didn’t let on to anyone. I don’t remember even telling Paul, but I'm sure I mentioned it after my doctor's appointments. I was feeling it and he knew it. He was incredible. All the chores fell on him. Most evenings, he made dinner, cleaned up and got Hannah bathed and in bed. By the end of July, my condition was pretty apparent to everyone. My hands and feet would swell terribly, and my co-workers would periodically come out to check on me and have me put my feet up. I was a pretty good patient, though. I knew that if things got out of hand, it would be bad for the baby and for me, so I didn’t need much coaching when it came to taking care of myself.

On the last Saturday in July 2007, Paul and I helped out with our niece’s wedding. Basically, I arranged people and he took the pictures. While we were driving to the rehearsal, I began having sharp pain in my upper back, wrapping around my side to just under my breastbone. It hurt so badly, we stopped at a drug store on the way to rehearsal to get one-use ice packs and Tylenol. I later learned that kind of pain is a classic symptom of pre-eclampsia. If I’m not mistaken, it’s also a symptom of a placental abruption.

During the wedding, my feet were so swollen, I had to put my feet up in the pew. When posing the wedding party, I’d take lots of breaks and sit as often as I could. I left the reception early and went to my sister-in-law’s house to get a nap. I felt awful. I probably shouldn’t have gone, but I’d given my word and wanted to keep it, though I know almost everyone would have been understanding if I had stayed home.

I had an appointment with my regular OB the following Tuesday. I began my maternity leave on Wednesday, August 1st. My dad had an appointment with one of his doctors on Thursday. All his doctors are in our town. He stopped by the house to visit and while he was there, my OB called and said, “Aimee, you need to go to Cincinnati.””When?” I asked. I was already scheduled to go there the following Monday.

“Today. I got your test results back and I’ve already talked to Dr. Livingston. We want you to get up there today. I’m not sure if they want you to go directly to the hospital today or if they will wait until tomorrow.”

Immediately, I called Paul and told him what was going on. He had to wrap things up so he could leave and I packed for all of us. Paul and I would go to Cincinnati. Hannah would go with my dad and stay with my parents. Not knowing how soon Abbie would be born, I took two things I had bought early in the pregnancy: a soft white blanket with silky ruffle trim and a white nightgown with, "Heaven Sent" in silver embroidered on it.

Then I called the FCC and they told me that I had an appointment with Dr. Livingston the next morning.

We drove to Cincinnati and stayed in a place for patients going to University (of Cincinnati) Hospital. It was ok, but the best features were: it was available and close by my doctor’s office. My first of twice-weekly appointments was on Friday, August 3, 2007. While Dr. Livingston was doing the belly examination, poking and prodding my belly and thus, Abbie, she began kicking him. He’d push my belly, she’d kick him back. They did that about 4 or 5 times and he chuckled, “I could do this all day.”

That interaction cemented my intuition: Abbie was feisty, strong and funny. Laid back, but won’t take junk from anyone. A year later, I can tell you, I was totally spot-on. She’s all of that and more, but most remarkably, she’s one of the happiest babies you would ever meet.

During that first visit, Dr. Livingston told me that he wouldn’t put me in the hospital IF I did everything he told me. I enthusiastically nodded my yes, promising to follow his instructions to the T. My next appointment was made for Monday morning; if things were better or the same, I would stay out of the hospital. If things got worse, I would be admitted.

During my appointment, we got the call that a room had opened up at the Ronald McDonald House. We had already paid the next night’s fee at the other place, but happily packed up our things and moved over to RMH.

I don’t think I could adequately describe what it was like walking into the RMH. It was beautiful. We toured the house with the House Manager, completed the paperwork and got settled in. Soon, it was dinner time. Most days, dinner is provided and on weekends, brunch or dinner is provided, sometimes both.

Paul and I both choked back tears as we ate our first meal at the RMH. The generosity was overwhelming. This little family had provided dinner that night, just them, not a company or church group. As other families chatted and ate, Paul and I scarcely said a word; we didn’t need to. We were both feeling the same thing.

Getting Abbie Home, Part 1

This is the first part in the series of telling our family's story. I pick it up when the real action began. We had found out in April 2007 that there was an issue after my AFP was elevated during a routine quad screen. Follow-up ultrasounds and appointments revealed that Abbie had an omphalocele. This begins after a regular follow-up appointment with my perinatalogist, during which he discovered that the omphalocele sac had filled with fluid and he didn't know why.

What a difference a year makes. (My oringinal title to this post)

I’ve been thinking a lot about what life was like this time last year. It’s crazy what a difference a year makes.

It seems that another mother whose child was in Cincinnati at around the same time Abbie was last year, has been doing a lot of reflecting on the past year, as well. In this post over at Eye on the Baby, she wrote (bold emphasis is mine):

Perspectives...you know how you can only get a certain perspective at a certain time, under certain conditions? Recently I've been going back through old emails in an effort to clean out my mail box. I've come across so many lovely, encouraging, compassionate words from so many people. At the time I got these messages, we were in the middle of a crisis. These words meant so much.

I remember clearly how so many people said, "It will get better." It was impossible to believe. But, here I am over a year later and when I read these words I know without a doubt that they're true.

It's the perspective you can only achieve with the passage of time.

Here's something someone I've never met in person wrote me when I asked her how she got over "it"....IT being the rather traumatic birth experience.

"I guess you get over it a little bit at a time. I remember my mind trying to replay the events of my daughter's birth over and over again too. It was like my mind was a filing cabinet and I had this file that was too frightening and sad to find a place to put it, so it kept lying it on top of the cabinet for me to try and find a place for it later.

"When your first experience as a parent is as frightening and intense as yours, your whole viewpoint of being a parent is just that, but as the days go by you start to have very good moments that start to out shine the bad ones, such as first time you held your baby, fed your baby, carried your baby away from an isolet, and got to take them home. Moms who have a typical birth, all those things happen at once and you can't even separate them, I know that you will cherish each one of those little victories individually."

Did she call it or what?! If there is anything this blog is (of course it's much, much more) it is a testimony to our doing exactly what she said - cherishing each one of those little victories individually.

I couldn’t remember if I wrote anything of what my family and I were experiencing last year. I had to go back and re-read the old posts to check. I had not written anything of substance about what we were going through and the mother's words above perfectly articulate why. It's too frightening to talk or write about. For me, I didn't even want to give the words, "My baby could die" life. I didn't want to say them aloud, putting them out there in the universe, taking shape and possibility. I didn't want the ultimate fear of every parent to be in the realm of possibility for the baby I had so long wanted and tried to conceive.

So it seems that I wrote 4 posts in August 2007. One was some sort of quiz I took that said that determined I was from West Virginia. lol. The title of that post was, “How’d they know?”. Then, I wrote one post about how Abbie’s birthday would be August 27th. Well, that didn’t work out for lots of reasons, so I posted another message which stated that she wouldn’t be born that week, after all. Ha ha ha ha. Ho ho ho. How funny. Because that message was posted August 29th and she made her entrance into the world on August 31st. Both of those messages were basically copied and pasted from emails we had sent family and friends back home. My 4th August 2007 post was a montage of our belly photo session.

There are many reasons I didn’t chronicle what was going on last year. Mostly, it was hard to articulate because there was just so much uncertainty and fear of the unknown. Of course, talking about it now will be the brief version, for so much happened during my days in Cincinnati at the Ronald McDonald House.

If you’re interested, go get yourself a cup of coffee or tea and sit a spell while I stroll down memory lane. I’m doing this just to validate for myself what happened last year and to maybe shed some light on our situation back then for those who may not know our entire story.

The Cincinnati part of our journey began on June 6, 2007. My perinatalogist had referred me to the Fetal Care Center because of some things he saw during an ultrasound during one of my appointments in May. They got me in rather quickly, and Paul and I drove to Cincinnati on the 5th, my grandmother’s birthday. Coincidentally, the 6th was my boss’ birthday and I completely forgot to send her a card.

The FCC staff was incredible. There are not enough adjectives to describe them. I had to be at the hospital at 6 am to start what would be a very long day of tests, consults and meetings. The first thing we had to do was get a fetal MRI. It took nearly twice as long as it should have because someone wouldn’t stay still. She’s been active since she was in the womb and I’ve always known that she’d be a firecracker, a fighter, laidback but not being a doormat. I knew this about her before I ever met her face-to-face.

Over the course of the day, we had a fetal echocardiogram, scores of ultrasounds, meetings with different doctors… it was a very long day. At one point, I got really hungry because I hadn’t eaten anything. I had been NPO after a certain time (midnight, maybe?) for the MRI, and I was so hungry, I was almost sick. The FCC staff directed us to our “nesting room,” a waiting room of sorts for parents undergoing testing, and the receptionist brought us lunch. It was so good. You know when you’re really hungry and you finally eat, how good it is? Multiply that by a hundred when you’re pregnant and you’ll know how good that was to me.

The FCC is located at Cincinnati Children's Hospital. It is a fantastic hospital. Navigating the concourse to get to appointments at different buildings, I began being at peace. If my baby needed medical intervention, I was glad it would be there.

Right before our team meeting, scheduled for about 6 pm, we met with a genetic counselor who talked about the possibility of our baby having Beckwith-Wiedemann Syndrome. It sounded okay enough. But then the neonatalogist came in and said basically, that she absolutely had it. Normally, they wouldn’t say that a baby would have BWS without having a clinical examination, where a doctor can examine the child, see her in person and then make a final diagnosis. We were told that her omphalocele, enlarged organs, and my huge placenta all pointed to them being able to diagnose her before birth. He said that if she was born before 32 weeks gestation, she would die. He said that if she made it and had a live birth, that she would be in the hospital anywhere from 3 to 6 months. He said all of these things in a rather cold manner and I completely fell apart.

The genetic counselor came back in and tried to reassure us. I was blubbering at this point and had to pull it together for our team meeting, which was being held up because I was falling apart in our nesting room. The genetic counselor was so sweet, though. She said that everyone approaches this differently. She has seen kids with BWS grow up and have very full, productive lives. That they know more about BWS now and know how to treat it. She said that the neonatalogist has to tell us the risks and has to prepare us for the worst.

I can’t remember clearly what happened next. What I do remember is going into a conference room and sitting down at a table, at which are seated some of the best minds in the country when it comes to dealing with sick babies. There I met Dr. Crombleholme, Dr. Livingston, and Dr. Lim. All would play important roles in getting Abbie here.

During the team meeting, they showed us the MRI images. You could see Abbie in my belly, already a big girl, measuring weeks ahead of what she was. We could see her large kidneys, liver and the omphalocele. It was at that point that it became real to me. Seeing her inside me like that was definitely an experience.. Those images were both fascinating and heartbreaking, all at once.

The team told me that I would have to relocate to Cincinnati around the first week of August. After I was in Cincinnati, they would monitor me with weekly appointments. My c-section would be scheduled for late-August or early-September, weeks before my original due date of September 21st. We were told to plan on the baby being in the hospital for at least 3 months or as many as 6. I asked some questions, made some notes, but was mostly robotic. I had had to pull it together minutes before this meeting, and the only thing I could focus most of my energy on was getting through the meeting.

Paul and I were pretty much numb following the team meeting. I remember it was dark when we left the FCC and we were really hungry. At that point, we didn’t know how to navigate Cincinnati all that well, so we agreed to eat at the hotel. We were staying at the Kingston Marriott, probably the most expensive hotel I’ve ever stayed at, but the hospital patient discount made it manageable. We didn’t get a break on the cost of the meals, though, I could hardly believe that the buffet was as much as it was. At that point, I didn’t care. I just wanted to eat and go to bed. I remember they had Chicken Ratatouille, which was wonderful. I also remember that for the soaps and shampoo that hotels provide, they used Bath & Body Works products. When we arrived, I lathered my belly with the lotion. After we got the news, I hated the smell of the stuff.

The ride home was very quiet.

Whew! (aka June-July Recap)

I have had numerous posts swimming around in my brain for the past, oh... couple of months. But, as I've hinted, we've been pretty busy and there hasn't been a lot of time for posting long, thoughtful messages, so I've kept them on the shelf. It's time to unload, so here goes. Grab a cup of coffee or tea and let's sit a spell and catch up.

June 2008

Another Milestone

The beginning of June marked the first anniversary of another Abbie/BWS milestone, when we went to the Fetal Care Center in Cincinnati. I was at my parents' house on the actual day (June 6) and it was pretty emotional. I've found that this summer, I get pretty emotional as each anniversary rolls around (odd to call them that, but what other word should I use? Those were pretty important days during my pregnancy with Abbie). My thought is that, last summer, I was trying to get through each day, each week, the best I could so that Abbie wouldn't be stressed and that I'd stay pregnant for as long as possible.

Because what I can say now, but couldn't say then, was that while we were at the FCC, we were told that if Abbie was born before 32 weeks, she would die. Even if we made it to the 32 week mark, she could still die. And so, I felt a tremendous weight on my shoulders for the remainder of the pregnancy. We learned that 50% of all babies prenatally diagnosed with BWS are stillborn. Even if I did everything my incredible team of doctors told me to do, we could still lose her. And those words, so stark and scary.... I couldn't even say the words last summer. I couldn't type them, either. I just could not put those words out into the universe and even give thought to the chance that I could lose the child I had so desperately wanted and had tried for over a year to conceive. I just Could Not Do That. I had to hope. I had to push on, praying more and harder than I ever had that God's hand would be on us both and that she would be born alive and that I wouldn't have a seizure or stroke from the pre-eclampsia.

I was a lot sicker than I let on, and looking back, I was a lot sicker than even I realized.

Funny how hindsight is 20/20, isn't it?

The milestone of June 6 is one that is intensely personal and private, and for the most part, I will keep it that way, sharing it with Abbie when she is old enough to understand the concept of the amazing miracle she is. I will say, though, that I sincerely love the staff at FCC, I love each and every doctor who lent his or her knowledge and expertise to help Abbie get here safe and sound, and I love each and every doctor, nurse and therapist who help nurture and guide her once she was here. My appreciation, gratitude and love for them is so much more than I can articulate and I will always think of them, my heart swollen with thankfulness.

A trip to Florida

Also in June, we took Abbie to Lakeland, Florida. If you haven't heard, there is an on-going revival there. I still haven't decided what to think or say about the experience. Until I do, there's nothing I can share that will make any sense.

July 2008

I cannot understand how this month has gone by so quickly. How is it that I am typing this on July 21? It seems that just a few days ago, we were celebrating Independence Day. This month has been pretty busy, with the middle of the month being occupied by our first Family Vacation. My cousin was married at Myrtle Beach on July 12th at sunset, and since we were using a travel gift certificate to go there for the wedding, we decided to stay a week and enjoy it. After all, it makes no sense to me to drive 8 hours one way to just stay a few days. Both girls enjoyed the sand and the ocean so much that my mom is deeming them both Beach Bums.

I wasn't sure how either girl would take to the sand, but I can report that both loved playing in/with it, running or crawling on it, and they pretty much spent the entire time covered with it. Hannah, taking after her dad, had to rinse off the sand immediately once she was finished with any particular sand castle or digging. Abbie didn't mind it at all, to the point that she boldly crawled around without being fussy and didn't even complain too much when her diapers were filled with it.

The ocean was Hannah's favorite part and each day, she grew bolder and bolder, venturing out a little further. The first day, she was brave enough for wet toes and feet, and by the time we left, she was ok with being in up to her knees. Abbie enjoyed the ocean as well, splashing about in the water and holding her breath when a wave splashed her face. She is fearless and this trip has shown me that there is no end to her bravery and that the next few years will keep me very busy.

Our last evening at the beach, we had a professional photography shoot, our first family photo. I can't believe that our oldest child is 4 1/2 and we've never had one done, but I thought that it was high time we had a family photo made and the info on the website was more than I could take, so I scheduled a session. The wind was fierce, as a tropical storm was brewing off the North Carolina coast, so she had to take 80 shots. There are so many good ones that we're planning on buying the CD. You'll understand why when you see the photos. But that might be a while, because the CD is going to cost around $150-$170 and we need to recuperate financially from the vacation before doing anything extra. Such is life when you live paycheck to paycheck.

Though it probably wasn't the wisest choice to go to the beach until we had saved more money,I wonder how long it would've taken us to finally make the decision and action to go. Does that make sense? I'm not sure how a lot of people live, but it seems for us, we hope for "one of these days," "one day" or "some day." My oldest baby will be going to Kindergarten in a year, and I don't want her childhood to slip by without making these kinds of memories, no matter what we have to sacrifice.

Looking Ahead

Speaking of finances, I am trying to figure out what to do. I have wanted to do a program that would allow me to work from home, making as much as $14 an hour. It requires a $200 investment, which we don't have. Even with our former home finally sold, we still don't have extra and coast along on fumes a lot during the week before payday. The perfect situation would allow me to stay at home with the girls indefinitely; however, I have this awful feeling in the pit of my stomach that says that I'm going to have to go back to work, at least part-time, just so we can keep our heads above water.

As I've mentioned before, I am thinking of getting my teaching certificate and perhaps even my Master's, in education. But that takes money, a commodity in short supply since we moved to the house in which we now live, tried to and finally sold the former home and were sued. (Long, long story that I cannot legally get into on a public blog).

At Hannah's dance class, I met a woman who works at a local children's clothing store. It sounds like a great answer for our present needs and may be the answer to prayers in providing extra income to allow me to either get the teaching certificate or do the work-from-home business.

While browsing the classifieds this morning, I came across an ad for a copy writer, which would be a dream job for me. It would be full-time and would require putting both girls in daycare. I would love to have this kind of opportunity, and yet wonder what kind of impact it would have on my children. Mother's guilt never ends, does it?

I do plan on getting back to finishing the garage. Right now, there are bathroom and plumbing tools and parts scattered everywhere, in addition to all the things that already needed to be purged or organized. I told Paul this morning that I strongly feel that the garage project and hopefully, the house, should be cleaned out and organized before Abbie's FIRST BIRTHDAY PARTY in roughly 6 weeks (can you believe it?!??!?). That, too, will require money for a babysitter and for the organizer to come back and lend her help and get-up-and-go. How I hope I can find the momentum I previously had! And how I hope Paul finishes the bathroom (no, it was never finished.... only the bath tub was installed. My house is still in complete and utter chaos).

Looking ahead, I have a LOT to do, to plan for and I hope to accomplish most of my goals. But mostly, I just want to enjoy my girls, the summer and plan for the future ahead of us.