>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.