Archive for the ‘Personal disclosures’ Category

Update on Baby Sage’s MRI

February 4th, 2012

Yesterday we made our way to Seattle Children’s Hospital in the dark.

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I hadn’t realized how nervous I was feeling about Sage’s MRI until I woke up in the night to nurse her and couldn’t get back to sleep afterwards. I just stared at her as she slept beside me. I knew an MRI was the next step we needed to take, but the thought of my baby under general anesthesia of course made me nervous.

In the morning before we left I was a flurry of nervous mommy energy, darting this way and that as I tried to get us out the door. I felt so grateful that my in-laws had taken Thad the night before (his first ever sleep over) and I didn’t have to deal with a two year old along with everything else. There have been so many moments lately when I send up silent thoughts of gratitude that we now live close to family for this season of our lives.

And then we arrived at Seattle Children’s.

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And again I said a quick prayer of gratitude that we live where we do. We always had pretty positive experiences with medical things in Prague, and felt well taken care of the few times we went to Prague hospitals for various reasons. But, there is something unimaginably calming when you walk nervously into a hospital building and are quickly greeted by people and signs that speak your language. There was no guess work, there was no translating. Sigh of relief.
But, Seattle children’s wasn’t just a good hospital experience because it was in English. I felt like it was a good hospital experience compared with others in the states as well. Everything was very well organized and structured, the building was clean and even beautiful in places. You could tell things had been well thought through. And well thought though with kids in mind. For example, this was the fun, inviting playground outside our window.

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Most of all though, everyone was just so friendly. People smiled and greeted us in the halls and asked if we needed help finding anything (that never happened in Prague hospitals). The doctors working with us really wanted to put us at ease. The anesthesiologist talked with us for quite a while, answering our questions, explaining what they would do, and even sharing stories about his own kids to help put us at ease. They were all very understanding and helpful.

When it came time they brought us and Sage to a prep area. We were able to hold her hand and be with her as they put her under. It was amazing to me how quickly she fell asleep. She looked so peaceful and still. We both gave her a kiss and then went up to Starbucks to wait.

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We got back to our room about forty minutes after we left her and waited for them to bring her back in, which wasn’t very long. When she got back she had a breathing tube in her nose. They had her hooked up to a machine to monitor her heart rate and all that. They took her temperature and did a heel prick to check her blood sugar. Everything looked good. She looked so small alone in the little bed. She shivered, we tucked the blanket closer around her. She looked beautiful.

They told us that as soon as she woke up we could hold her and I could nurse her. We waited. They said she should wake up soon. We waited. An hour went by. We waited. That period of waiting for her to wake up was probably the hardest for me. I was glad for the equipment monitoring her and that the doctors regularly checked on her. Eventually she woke up and was starving. We cuddled and nursed.

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They wanted to monitor her till 1pm. So we sat and read and cuddled and nursed. Apart from not being completely comfortable those few hours felt a little like a vacation to me. I didn’t have to do dishes, or laundry, or entertain a toddler, or listen to “mommy!mommy!” being screamed at me. Instead I got to just cuddle with my baby and talk and read with my husband for two hours. That part of the day was really nice.

Really the whole experience went as well as it possibly could have. The only negative was that we weren’t able to get an appointment with the neurologist until April. So, as of right now, we won’t know the results of the MRI until then. It’s a little frustrating to have gone through the stress of the MRI and know that there is information available about my daughters condition, but to still not know what that on formation is until April.

We were at least able to get a print out of the report and a cd of the MRI. We are thinking since we have the results we will try and see if we can get into a different neurologist to have someone interpret the results for us sooner. Or…anyone reading this know how to understand brain MRIs??

Whatever happens I find myself being continually reminded to take life one day at a time and to take this change in perceptions and expectations about my daughter one little piece of information at a time.

Rejoicing in the journey,
Bethany Stedman

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Special Needs

January 25th, 2012

It’s funny how sometimes even when you sort of expect something it can still shock you when it happens.

On Friday we braved the snow and slush and went to Seattle Children’s Hospital for another neurologist appointment for Sage. It was the first appointment we had about her microcephaly where the doctor didn’t say, “well, it could be nothing…” the neurologist we saw was thorough, asking a lot of questions and spending a lot of time looking at Sage, checking her reflexes and movements. He was straight forward and clear, telling us that he definitely saw enough to concern him. He told us that her head is now 2.8 deviations and that since her weight and height are on the growth chart it’s called disproportionate microcephaly. He recommended an MRI, saying that it was the best place to start figuring out what is going on and would give us some direction.

And then it happened… He told us he thought we should start having someone work with her and getting her some early therapy. Then he gave us a packet for “children with special needs” It made my head spin…”special needs” I knew Sage had microcephaly. I knew there was a chance that she would have some delays, and although I knew that label was a possibility I hadn’t really imagined it or truly thought of my child as having special needs until that moment.

It was like a reality check for me.

Suddenly I was reminded of when I took a class in college on Teaching Children with Special Needs. I remember feeling convinced during that class, with an irrational intuition, that I was going to have a child with special needs. And I remember begging God to not let that happen. Now I look at Sage and I can’t imagine asking God that I wouldn’t have her and can’t imagine having any other child. But, I still wish I knew for certain that she would be able to live a completely full functioning, “normal” life. But, I knew in that moment that wasn’t a certainty I could have. It may yet turn out that way, but there’s enough concerns that I have to come to terms with the fact that it might not.

I sat there a minute a little stunned still by the term “special needs”.

I couldn’t deny it anymore. I couldn’t justify the fact that she hasn’t met her milestones. I couldn’t keep holding on to the “well, it could be nothing” statements.

All along I have sort of known this was coming. I knew something wasn’t normal. Not in the way you know that two plus two equals four but with an intuitive sort of knowing.

When she was six weeks old I had a vivid dream within a dream where things kept threatening Sage and I had to fight for her and protect her. At the most vivid part I saw a number of wasps and hornets stinging Sage. I woke up still in the dream and preceded to dream that everything that had happened in the dream within a dream was happening in real life. It was after having this dream that I knew we had to schedule Sage’s first well visit with the pediatrician.

Maybe it’s bad for me to say it but I’m glad that we didn’t go in earlier, glad that we had those two months of ignorance, to just be with Sage, bond with her and get to know her. Being able to bond with her without the uncertainties of microcephaly hanging over our head was precious and I’m grateful for it.

But, as we sat with the neurologist I knew that the time of denial was over. It was time for a new season. Time to grow up and face my new reality. Time to do the research. Time to make the phone calls. Time to get the help. Time to do whatever we can to make sure that my special little girl can have the best life possible.

On February 2nd Sage will have an MRI of her head and spine. It will be under general anesthesia. If you pray, pray for her safety, pray that we get the best possible answers, pray that we are able to get the results back quickly (as it is right now our follow up with neurology isn’t able to be scheduled until April – we don’t want to wait that long) and pray that we have no problem getting the MRI pre-approved with our insurance.

Rejoicing in the journey,
Bethany Stedman

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2011: Shifting Ground

December 31st, 2011

2012 is one day away and, like everyone does at this time of year, I find myself looking back over the year as well as looking forward. There is a part of me that wants to just rush forward, slam the door shut on 2011 and forget about this past year. But, I also feel the need to document this year a little, it was a big year, a lot happened this year, good and not so good.

I thought an easy way for me to document the year without dwelling on it too much would be to just compile a quick list of my most popular and favorite posts from the past year, but as I started to look at my analytics and thought back on the post I’ve written this year, well, it just didn’t seem like a really good gauge for what happened this year. Sure I wrote about leaving Prague, my sister-in-law getting married, birthing my second child at home, and deciding to move to Seattle. Those were big events from this year. But, what I couldn’t write about was the pain we carried for those we cared about who faced abuse, divorce, law suits, loss of income, foreclosures, miscarriages, cancer, and more. What I couldn’t put into words was the many goodbyes, the internal struggles with placelessness, loneliness, and the overhanging unknowns.

It felt like the ground was constantly shifting underneath us this year. Even as I watch the ground continue to shake for many I love I feel our footing stabilizing for the first time all year, perhaps for the first time in a few years. We’ve been tossing about in a sea of uncertainty and instability and we’ve finally reached solid land. I admit I had more than a little trepidation about where we were landing, but now that we’re here I feel like I can finally breath with my feet on firm soil.

I feel excited about 2012. I feel excited about the future in a way that I haven’t felt since our first year in Prague. I feel like Bryan and I are coming into our own for the first time feeling more at peace with who we are, what we are doing and where we are going than we ever have.

2012 may not look as exciting from the outside, we won’t be gallivanting around Europe, having dinner parties with people from all over the world. We won’t be living in an intentional community/farm like we had thought we might be. We wont be having a baby, starting a new career, or moving. We won’t be doing exciting things, and our actions this year probably won’t change the world. For the first time since we first got married our life will look prettying much the same as an other suburban family. But, I feel like it fits for now. It works for this stage of life. And at least right now, I’m excited about it.

I don’t think I have ever felt so anxious to say goodbye to a year as I am to say goodbye to 2011. Nor have I ever felt so anxious to start a year as I am to start 2012. So bring on the bubbly, let’s get this party started and ring this year in right!

Rejoicing in the journey,
Bethany Stedman

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If you come to my house….

December 16th, 2011

If you come to my house for dinner…

You can expect to be given a home cooked meal made of real food…but, it’s very likely that there will be dirty dishes in the sink.
Expect to be eating largely organic, free-range, and grass fed as the case may be…but my toddler may sing ABCs during dinner, or reach clear across the table for bread, or roll his toy car on your back.
Expect that I will have good beer (usually local) that you can enjoy…but, you may be dragged to the playroom to play cars or asked to hold the baby for a bit.
Expect to be heartily welcomed…but, you may be asked to leave early because we aren’t afraid to kick people out because we’re tired.
Expect casual, comfortable and usually messy.
Expect laughter and conversation…but expect it to be interrupted by kids and seasoned with awkwardness now and then.

If I invite you to my home for dinner…

I expect you to play with my kids at least a little.
I expect you to make yourself at home – take your shoes off, help yourself to water, beer, raw milk or whatever other drinks are around, change the music if you want.
Excuse the mess and pardon the kids chaos.

I love having people over, i would usually much rather have people in my home than go to someone else’s, but I’m not a Martha Stewart type of host. When I invite someone over I invite them into a little bit of myself – I am messy, and unfinished and so is my home. I am not interested in facades or perfection, I can’t maintain them. I am interested in friendship, I am interested in building authentic community.

I will welcome you into my home on the day when my kids took extra long naps, and I am refreshed and prepared, and on the day when I only got two hours of sleep and didn’t have time to clean. I will welcome you in on the days when I’m energized and creative and the days when I just can’t snap out of my negative funk. Sometimes I might ask all the right questions and we’ll have a great conversation. Other times I might be tired and awkward and we may end up just watching an episode of Friends or Modern Family together.

So, come on over. Come in and take a seat. Breathe. Relax. I won’t pretend if you won’t. Welcome to the mess, the chaos, the unfinished work in progress. Welcome to my home.

Rejoicing in the journey,
Bethany Stedman

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Microcephaly: A New Twist in our Journey

December 5th, 2011

A few weeks ago my daughter, Sage, was diagnosed with microcephaly. It essentially means that her head is measuring more than two deviations too small. Microcephaly is a neurological disorder and there are a lot of different reasons why this can happen and a wide variety of problems it can be associated with.

Our pediatrician recommended blood tests and an MRI to try and determine the cause and extent of the issue. So far the blood work has all come back normal and we have yet to do the MRI. We’ve also seen a neurologist and been referred to a geneticist. As we’ve learned a little more though, it seems likely that we will never know a cause or, in advance, how it might effect her. It also seems likely that she will have some developmental delays of some sort. They could be mild delays or severe delays, they may show up right away or not for a while, and at this point it seems we have no way of knowing.

I honestly feel weird writing about it, since I don’t feel like we really know anything. All we really know is that she’s measuring at 2.4 deviations and that there’s a good chance she will have some developmental delays, although there’s also a chance she could grow up without any noticeable delays at all. We just don’t know.

In some ways I’ve been really thankful that we found this out right in the middle of a move, when there’s lots to do and not much opportunity to stop and think. The little research I’ve been able to do has made me realize that maybe its better for my psyche if I don’t do any at all. It’s hard to feel so helpless, though, and to live with this constant unknown.

I love my little girl so much. We bonded so much more quickly than I did with my son. I look at her and my heart melts. I can’t imagine my life without her and have already sort of forgotten what life was like before she was born. I want her to have a wonderful and full life. I don’t want her quality of life to be diminished because of this. I don’t want her life to be more difficult because of this. It breaks my heart to think of all of the what-ifs and how this may affect her over time.

And then she locks eyes with me and smiles and I know that whatever comes we are going to be ok. My beautiful little girl will always be my beautiful little girl. And I feel ready to face whatever comes, together, as a family.

Rejoicing in the journey –
Bethany Stedman

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