Archive for the ‘parenting’ 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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A Reset Button

October 22nd, 2011

When I was younger so much younger than today, I never needed anybody’s help in anyway. But, now these days are gone I’m not so self assured…

Its nap time. Thad’s asleep and Sage is is also drifting in and out of consciousness. As I sit here with images from the morning dancing around in my head I’m wishing I had a reset button. I wish i could change this morning, I wish I could change almost all of the ways I’ve interacted with my son in the past twenty four hours. But, I can’t.

…But, every now and then I feel so insecure, I know that I just need you like I’ve never done before…

As I sit here I kept thinking about these two prayers I wrote when Thad was little. I just read them again and this sentence jumped out and almost screamed at me, “I need you to show me what is really required of me so that I don’t heap unneeded guilt upon my own shoulders or the shoulders of those around me.” I realized as I read these prayers how desperately I need God to infiltrate my parenting, especially in this area of guilt and the expectations I place upon myself.

Help me if you can I’m feeling down, and I do appreciate you being round.

This morning there was a moment when I hid in the bed room and cried for a minute, when I thought to myself, “I need someone to talk me off a cliff…” I almost called a friend, but it was six thirty in the morning and even though my day had started two hours earlier I knew not everyone else’s had, and besides the courage it would take to make that phone call and admit I needed help – not I had needED help, but I need help, right then and there, before sunrise kind of help…well… that’s not the kind of thing you’re really suppose to ask someone for. So, I sent up a desperate prayer, “Lord, help me.”

Help me get my feet back off the ground, won’t you please, please help me.

And slowly, quietly help came, not in the way I’d wanted but in a gentle shifting, it came.

Something sunk in for me in a new way today – the power of the present moment. I was sitting here regretting my actions of the morning, a little upset with myself that I hadn’t worked up the courage to call for help, and I realized afresh that what I was dwelling on was futile and emotionally detrimental to my health. I can’t push a reset button. I can’t change the parent I was in the past…but, I don’t have to let that influence, and even dictate, the rest of the day or the parent I’ll be in the future. I can choose to dwell on my feelings of guilt, to hold up an image of myself as “the worse mom ever”, or I can choose to reset my attitude and focus. I can’t start over, but I can start anew from this moment.

Most days I’m not who I want to be or where I want to be, but I’m realizing (slowly) that I don’t need to be. I am me, here and now, the best me I have ever been, and I am becoming.

…But, now I find I’ve changed my mind and opened up the doors.

Rejoicing in the journey -
Bethany Stedman

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Keeping The Toddler Busy: A New Plan

October 17th, 2011

Yesterday we move out of my parents house and into an apartment where we’ll stay till the end of November. We’ve been dreading being in an apartment with a toddler and baby and no yard or space. Bryan and I are used to living in small spaces and we tend to live a pretty minimalistic lifestyle, but we’ve learned lately that there are some things that make life with an active toddler more manageable. One of those things is space. So, since we won’t have space in the coming weeks I’ve realized I’m going to need some other coping mechanisms to keep my sanity – since I won’t be able to just let him run around in the backyard.

I’ve also realized lately that both my son and I do WAY better when we have some clear structure and routine in our lives. We both like knowing what to expect. I think also with all the change we’ve had lately – a new sibling and living somewhere new every couple of months for the past year and now moving again two more times before the end of the year – more structure would help both Thaddeus and I to feel a bit more secure.

In addition to that I’ve noticed Thaddeus is really wanting and needing some more mental stimulation. He’s started to really take notice of letters. He can sing the ABC’s without missing any letters and whenever he sees the alphabet written somewhere he gets excited and says “ABC!” He loves to count and can count to ten now as well, but I’m not sure if he totally has a concept of what the numbers mean. He doesn’t recognize written numbers, but seems interested in them. I think he would really enjoy and benefit from some more active, focused learning.

So, in light of all those thoughts I’ve decided to put together a more structured schedule for us over the next few weeks and see how it goes. It’s nothing by the clock, more of a rough focus for each day with one daily structured activity and two daily outings of some sort. Here’s what I’ve come up with for this week (of course this is subject to change).

Number of the week: 1
Letter of the week: a
Word of the week: apple

Ideas for incorporating these into our lives: give him one whole apple for snack instead of apple slices and talk about how it is one apple and apple starts with a. When we play play dough make the letter and number of the week. Whenever there is 1 of anything point it out. When out and about point out words that start with ‘a’ and the number 1 when we see them. Make applesauce. Incorporate sign language by signing the word of the week whenever we talk about it.

Monday October 17:

Weekly Coloring Activity: color a cut out of the number and letter of the week & write out the word of the week to put on the fridge
Morning Outing: walk around the neighborhood
Planned Activity: colander sculptures
materials needed: colander and pipe cleaners
Afternoon Outing: library – get books about apples
Prep: freeze discovery ice block

Tuesday October 18:

Morning Outing: breakfast (w/ my sister and toddler?)
Planned Activity: edible finger paints
material: corn starch, sugar, water, food coloring, paper (or powdered milk, water, food coloring)
Afternoon Outing: park (w/ cousins?)

Wednesday October 19:

Morning Outing: (see planned activity)
Planned Activity: nature walk
materials: egg cartoon to collect things in
Afternoon Outing: go to the midwife’s and chiropractor

Thursday October 20:

Morning Outing: walk around neighborhood
Planned Activity: discovery ice block
materials: large block of ice with toys frozen in it, hammer, sponge, other utensils to hit, rub, and manipulate the ice
Afternoon Outing: play date with Melissa

Friday October 21:

Morning Outing: walk to bagel place for breakfast
Planned Activity: apple prints
materials: apples, left over edible finger paint, paper
Afternoon Outing: park (play date?)

Saturday and Sunday October 22 and 23: fun with family and sage’s blessing ceremony. Go to church with sage for the first time?

So, that’s the plan for the next week.

What do you think? Any suggestions for me? Have any of you ever done anything like this?

Rejoicing in the journey -
Bethany Stedman

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Sage’s Birth Story: Part One

October 1st, 2011

The Sunday I went into labor felt like a long day. I had spent the week before crying multiple times a day over a variety of things. The Friday before the birth my mom left for the Philippines to be with my brother and sister-in-law as their baby was in the hospital and they were still trying to figure out what was wrong. Saturday we had a nice day and my dad cooked us a wonderful dinner. Sunday morning my dad left for a business trip to Costa Rica. I spent most of Sunday feeling discouraged and down, even though Bryan and I were able to spend some nice time together during the day and we had a really nice family outing to the library in the afternoon.

I remember crying at the library. I checked email on the ipad while there and I got a really sweet and encouraging message from my friend, Melissa. In a moment when I was feeling especially discouraged about still being pregnant (I was a week past my estimated due date) she told me she was proud of me and wrote this “So today, instead of saying when is this baby going to get here?! I want you to say ‘I am one tough mama, I can handle this!! I can be patient for nature. Not everyone does this and I am proud of myself for waiting it out!!’ and give yourself a nice pat on the back. Or just pat your belly if that is easier.” It made me smile and then cry. And it made me feel a little better too. Little did I know how much I would need to hear, and remember her words that I was one tough momma in the hours to come.

My labor really got started Sunday evening around 6pm. I’d been having contractions steadily all afternoon, but they weren’t really labor contractions, they were just the same tightening feeling that I’d been having since I was about 20 weeks pregnant. But, around 6pm things changed, these contractions were different, they felt like labor. Suddenly as I felt them I remembered, really remembered, my first birth in a whole new way.

I continued having regular labor contractions as I made dinner and put Thaddeus to bed. When a contraction would hit I’d just lean over against the counter and do what I needed to do to deal with it and then go back to making dinner. We had a broccoli and green bean pasta for dinner. Bryan and I split a beer and toasted to the baby being born soon.

Dealing with the contractions got a little harder while putting Thad to sleep as they got more intense while I was nursing him. Thankfully he fell asleep quickly and I only had to work through two or three contractions while putting him to bed.

After Thad was asleep we called our midwife, Shell, and gave her a heads up about what was going on. Then I had some chocolate crème brûlée that my dad had made the night before and we tried to watch some tv. That didn’t last long.

It was getting later and things were moving along well so we started getting some stuff ready – moving birth supplies into the bedroom, changing the sheets on the bed, etc. We put on the playlist of songs I had made for the birth and danced our way through a few contractions. Shell called back to see how things were going and told us she was on her way. We called my sister and asked her to come be with Thad in case he woke up. We texted my mom (since we knew she was up any way because of the time difference in Cebu) and I sent off a quick email to some close friends who had agreed to pray with me throughout the last few weeks of pregnancy.

When Shell got here she started setting up her stuff, and helped me through a few contractions. Then we all moved out into the kitchen. Shell had one of dad’s crème brûlée’s and a coffee. Bryan and I had some tea and we all just sat and talked in-between contractions. Shell shared stories with us that made us laugh. (She really should write her memoirs some day – I know I would love to read that!)

Soon Brie arrived and joined us for a crème brûlée of her own and plenty of her own energy and talkativeness. The contractions at this point were difficult but manageable and Shell kept saying “I think you’ll be surprised. I think your farther along then you think you are.” which was of course an encouraging thing to hear.

After everyone had finished their desert and drinks we moved back into the bedroom and Shell did an internal exam – more for the opportunity to turn the baby since she was still posterior than to find out how dilated I was, but it was encouraging when she told us that my cervix was dilated to a five on it’s own but could easily stretch to an eight. My sister asked something about how much longer Shell thought it would be and Shell said something to the extent of it being up to me, that my cervix wasn’t really the issue, and it would quickly open and stretch as it needed to once I was ready and about how it was going to be more about me being ready and not afraid to push…or something like that. It was getting harder for me to concentrate at this point.

After I was checked Brie and Bryan started laying down the plastic floor covering stuff that we got to protect the carpet (my dad was worried we’d ruin the carpet in his bathroom again, like we had when my son was born). The stuff we got this time had adhesive on one side so it actually stuck to the carpet and didn’t slide around. It worked really well. My sister got really into the job of covering the carpet and even made a little “run way” from where I was laboring on the floor in the bedroom to the bathroom. It even had an arrow in the middle made out of duct tape. We all got a little chuckle out of it.

It was nice to laugh during labor – my labor with Thaddeus had been really, intense and heavy and even contemplative. Up to this point in my labor with Sage things were much lighter, more relaxed, and I felt much more present and grounded.

Once we moved into the bathroom with everything all set up I hit what I’m going to call the peeing stage of my labor. By this point the baby was very low in my pelvis and putting a lot of pressure on my bladder. For a while this was the pattern that was my reality – have a contraction, go to the toilet and pee, come back out, feel thirsty and have something to drink, have another contraction, get up again to pee, again have something to drink. It went on like this with me peeing about every two minutes for quite a while.

Then things slowed down a bit. I remember my sister asking numerous times “what are we waiting for?” and looking at her phone. I remember her asking Shell how much longer she thought it would be and how far along she thought I was now. I didn’t realize it at first but her anxiety and desire for it to be over started rubbing off on me. I was the one who really wanted it to be over, I was the one working through the pain every few minutes! My stress level rose.

I remember telling them that I felt a lot of pressure (which isn’t surprising since the baby was very low by now) and that I kind of wanted to push but didn’t really feel ready. Shell told me if I wanted to push I could try and that if I wasn’t ready it wouldn’t really do anything. For the next few contractions I pushed. Shell listened to the babies heart rate, which sounded great. The pushing felt nice with the contractions, but it didn’t really do anything.

I started to feel discouraged as Brie asked again “what are we waiting for”. There started to be longer distances between contractions. I remember during a particularly long break between contractions I thought to myself “you need to ask brie to leave” it was clear as day and I knew it was what I needed for everything to pick back up again. But I wrestled with telling her for what felt like a mini-eternity. I didn’t want to hurt her feelings, I knew she had said she really wanted to be at the birth. I had planned on having her video the birth and take pictures (as long as Thad didn’t wake up), since I was always a little sad that I didn’t have video/pictures of Thad’s birth. Would brie take it the wrong way, or would she understand? I struggled with these things for a while, but I knew I had to ask her to leave. So, I asked her to go, and she did, and pretty much immediately things picked up again.

…. check back tomorrow for the rest of the story…

Rejoicing in the journey -
Bethany Stedman

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