Cystic Fibrosis

My son has enough problems just with his little heart.   We were pretty devastated to learn that his newborn screening that is done by the State of Oklahoma came back positive for Cystic Fibrosis.  A Sweat Test confirmed the diagnosis.

What does this mean?

It means that Rowan has one more annoyance in life to deal with.  It means that his life expectancy is significantly shorter than the average person currently, but who knows what it will look like in 36 years.

Where this affects us outside of Rowan is it means that Doc and I are both carriers for Cystic Fibrosis (about 1 in 30 are).  It means that each time we are pregnant that child has a 25% chance of having CF, a 50% chance of being a carrier, and a 25% chance of having nothing wrong with them at all.  Basically, this means that we can't have more biological children without a high risk of CF in them as well.  They do offer tests during pregnancy to see if a fetus has CF - but that is a decision I could never be comfortable with.  I don't want to play Russian Roulette with pregnancies.

SO - if we decide to have more children, we'll be going to adoption route.  It's early to be thinking about this as we don't even know if we want to have more kids, and certainly not right away - but it does help me cope.

I have dreamed of having a big family like mine - and adoption was always a part of it, but having the option to have your own children removed is a tought pill to swallow.

Rowan - my little wolf

"He came naked, by night, alone and very hungry, yet he was not afraid!"
- Rudyard Kipling "The Jungle Book"

Saturday night at 5:30 I had a contraction.  I had another one at 5:49.  They stayed pretty light and about 9 minutes apart until about 7:30.  Then I had them every 3-5 minutes and it was all we could do to get to the hospital and into a room by about 9:10.  I was at a 4 when I arrived.  Within an hour I was an 8.  The contractions had no break between then for the last half hour before I received my epidural.  This labor was much more difficult than Little Birds until the epidural was placed.  With no break between contractions there was no time for me to rest or recover from the previous contraction.  The contractions were also much stronger. After I was an 8, my doctor showed up.  I was completely dialated a few minutes after I had been an 8.  That was around 10:30.

I had tested positive for GBS at a previous visit, which meant I was supposed to receive antibiotics 8 hours apart.  Considering that, they wanted to let me wait to push until the antibiotics had been in my system for at least 2 hours, so I laid there, feeling absolutely fine for about 45 minutes.

At 11:30, they were ready to let me push.  They set up the room for delivery.  I was really worried about pushing.  It took me 2 1/2 hours to get Little Bird out and I could feel myself pushing then.  With an epidural I was worried I wouldn't be able to do it well enough to get him out before he was stressed.

At about 11:40, they asked me to push once just to see how it looked like it was going to work.  It was 20 minutes until December 11th, my birthday - and I was sure Rowan would be sharing it with me.  But after 1 push, my husband looked at me and said "Honey...he's going to have his own birthday."  At 11:45, he was born.  He was beautiful, and giant and cried out as soon as he was free.  My mother was with me for this delivery and she was moved to tears.  Doc and I were so happy to finally meet him.

He came with a full moon, and an eclipse.  He came like thunder - fast and fierce.  His middle name, Elyas, is the name of a character in a book who is friendly with wolves - I think this child will not be so mild mannered as a tree.  I think Rowan my be my little wolf.

Family Portrait?

This year, for Thanksgiving, I took on the role my mom usually does of coming up with the “family craft” for a Christmas decoration.  In the past, we had made ornaments to hang on my parent’s tree, but with my brother having his own family, our growing family, and my youngest brother living pretty far away, I thought to try something different.

When I was pregnant the first time, I made a few paintings of “bee family portraits” for the baby’s nursery.  I painted each person as a bee in a cartoonish style.  I thought it would be neat to make something a little different for a Christmastime decoration.

So I went to Hobby Lobby and picked up a few snowmen ornament kits.  There are 11 (almost 12) people in my side of the family.   I purchased enough supplies that each person could make 6 snowmen.  Those 6 snowmen would each be identical to each other but unique from everyone else’s.  Once we finished, we’d pass out one of the snowmen that we’d made to each family unit.  Then we’d all have a set of snowmen for each person in the family!  I even convinced my mother-in-law to chip in and make one for her and my father-in-law to add into the mix.

 

From left to right: Madison, Dad, Michael, Mom, Meredith, Little Bird, Me, Doc, Little Tree (expected any day now), Janis, Clint, Trisha, Jake, Matt. 

 

The result ended up coming out pretty fantastic.  I painted a canvas with a simple “snow backdrop” and we arranged all of the snowmen on it.  I plan on putting a rustic looking frame around it and hanging it up with the year on it.  As our family grows, we may need to look at bigger canvas! 

Almost 2 - Little Bird's Year in Review

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To celebrate Little Bird's life, each year we put together a photo book and then let her close friends, family, etc. write a little note to her about what happened this year.

Trick Or Treat Weekend

 

This year’s Halloween activities were so much fun!  Despite the amazing year we had last year, who would have thought this year Little Bird would be so grown up?  Proof that parenthood just gets better and better.

We bought her a feedbag from Carmike’s Pumpkin Patch and walked around to see all of the animals.  She was afraid to let them eat out of her hand, but tried to be brave a few times.  Eventually, she would just put food in my hand or in her Grandma’s hand and tell us which animal she wanted us to give it to.

 

In September, we took Little Bird to her first Scottish Games, and the pony ride was TERRIFYING for her.  But just a few weeks later, she saw the horses, and decided she was going to ride them!  She jumped in line, and when it was her turn to get on, walked right up to the horse, climbed up, and held on like she’d been preparing for this moment.

She didn’t giggle hysterically, or smile from ear to ear, or cry, but she had a smug little smirk on her face as if she was very proud of herself.  We didn’t even have to walk beside her as they went around.  How did she get so big?

 

Halloween weekend we spent with our family.  Grandma helped Little Bird carve her first pumpkin by scooping out the guts.  Little Bird thought the pumpkins were “icky” and “eeewww” so she wasn’t too interested in helping her aunts, Grandparents, and mom and dad carve pumpkins.  Instead, she focused on filling a large bucket with all of the crab apple seeds and acorns she could find.  Then she dumped them out, and recollected.  We did have fun with the pumpkin carving.  In honor of this fall, I carved a squirrel and acorn for Little Bird and I’s pumpkins for all the squirrel chasing we’ve done.  Doc carved a tree, until he became fascinated with a corkscrew and decided to explore the art of tiny holes in pumpkin.  The rest of the family stuck to faces, with the exception of Aunt Meredith who made an awesome dragon.

		The Pumpkins VIEW SLIDE SHOW DOWNLOAD ALL

The next night it was time for Trick or Treating.  Little Bird wore “mommy made it costume II” this year.  She was a peacock!  I had some extra ribbon from a wreath I made that I turned into a skirt.  Add some feathers and a little headband and viola!  We only made it to a few houses, but Little Bird LOVED getting to get candy from people and even though we didn’t get a “trick or treat” out of her, we got lots of “thank you”s and “bye”s.  I tagged along as “Supermom”.  I was surprised by how many comments I got from other parents about my costume.  Apparently, I should market the “Supermom” pregnancy costume.  We had a wonderful Halloween season and I cannot wait for next year when we need a wagon to take our TWO children out and about!

FLASHBACK: 1 year ago

 

 

 

 

 

 

 

FLASHBACK: 2 years ago

 

(I’m the pregnant one on the right)

Preparing for a Hospital Birth

With Little Bird, I felt extremely confident in my ability to have the birth I wanted.  It would be just a few people, all people I knew.  We’d be at home, where I felt safe and in control.  I’d know where everything was, have access to my comforts, and work through whatever pains labor brought on.

Now, I’m packing a hospital bag, filling out paperwork to “preregister” for my epidural, and trying to think positively.

A natural birth for me and my Little Tree are not nearly as likely.  First, I’ll be in a hospital, so the access to medication and interventions is much more ready.  Second, Little Tree is not a “healthy” baby so any minor hiccup could escalate to c-section – things that you might not worry about with a “normal” kid.

So I am preparing myself to be okay with whatever happens.  My birth plan is simple.  I would like to forgo any medication or intervention that is not required for my son’s safety or my own.  However, I have had to be strong in so many other ways for my son, that should I decide that the pains of labor are not something I am capable of handling this round, I’m going to ask for the epidural and be okay with that. 

Without an epidural, I can go see my son in the NICU and possibly even be present for some of his testing.  With an epidural or any other pain medications, I have to wait until I completely regain feeling in my legs to go see him.  With a c-section – my recovery has to take a higher priority and it could be a few days before I get to see him, depending on how the surgery goes.

So I’m going in hoping for the best, but accepting that I’d rather have an epidural, or Pitocin, or whatever other things they might throw at me than a c-section.

Primas

We were lucky enough Wednesday to have a visit from Doc’s brother and family.  Due to our current medical situation, we haven’t been able to go see them and welcome our newest niece, Maya.  Maya is 2 months old today!  We finally were able to meet her, and she is one sweet little cuddler!  Little Bird loved getting to play with her cousin, Isa as well!  The two got a long really well together with very few sharing struggles.

Little Bird also was really happy about getting to hold her baby cousin, Maya.  She would run over and sit down so she could hold her.  She loved feeling baby Maya’s hair, giving kisses, and poking pointing at the baby’s eyes and nose.  It’s been hard missing out on visiting our family that doesn’t live in town the last few months, so we are always grateful for any time people are able to come see us.  Little Bird loved playing with her Primas and showed us once again how patient and gentle she can be.  We have a lot of faith that she will be one of the most amazing big sisters to her little brother.

Still a Hippie

Well, I toured the St Francis Labor and Delivery floor with Doc.

The good thing is that the NICU is much closer to the Labor and Delivery rooms as well as Postpartum recovery than I expected.

That’s about all the good things.

It’s not home.  There are too many people moving around everywhere.  It feels like a big factory shuffling people around.

I loved Little Bird’s birth.  I’m terrified of what this one will be like.  I’m terrified that I won’t be able to do it this time around. I’m afraid that knowing what awaits him when he is born will cause a mental block that will keep me from letting my body do what it needs to.

But I can’t dwell on what scares me.  I can’t let it matter – because it doesn’t.

I’m scared.  Big deal. The hospital terrifies me.  Who cares? This entire pregnancy from flu shot to high level scans to hospital delivery, knowing I will most likely not even get to hold my son for several days at best…it’s so anti who I am and what I believed in.  It goes against every maternal instinct I have had.  All of those “earth mother” “naturalistic” “trust in myself” ideas used to be so defining to how I viewed myself.

But, Rowan doesn’t need a super hippie mom who mistrusts the business of healthcare.  He needs a mom who does what is best for him, even if it’s scary.  Time to let go of “who I am” and be who I must.

We don’t all get to stay young forever.  Sometimes we have to grow up and realize that who we are doesn’t fit and we have to change to be something we don’t recognize.  I can figure out who I am again when my son is home with his family.

A Little piece of Heaven

 

 

I think October might be my favorite month of the year because it is always so soothing, despite the fact that it is the beginning of the busiest time of the year. 

Our family has been extremely lucky this month too.  Doc decided to give up the week of vacation we were hoping he could take to spend some time together as a family before Rowan’s arrival in December due to the fact that he will have to take unpaid leave past his limited vacation dates to be with us when Rowan arrives or present for his surgeries or recovery.  While this was just one sacrifice we thought we’d have to make, we’ve been extremely fortunate in that his schedule this month has afforded him an amazing amount of family time.

He only was scheduled one weekend to work, so we have every weekend together this month.  We spent some time as a family Sunday and realized it was the first day we had had together in over two months.  Doc has been home mid-afternoon, meaning we can take Little Bird to the park and enjoy family time in a way that has not been possible for the last few months.

On our first date in Stillwater, Doc took me to a park.  We stood on top of the jungle gym and watched a few kids playing nearby.  Doc said something super corny.  Doc told me that he thought that was what heaven must feel like.  Even on our first date together, we felt a sense of peace just being together and being outside, watching carefree kiddos play felt, well, heavenly.

As we played in Woodward Park with our daughter on Sunday, Doc grabbed my hand as Little Bird took off towards a tree yelling “Squirrel!  I see you!  Come here!” and said “You know, I was wrong on our first date.  I think this is it.  It’s even better when it’s your kid.”

 

 

 

Right now, our family is happy.

 

 

 

 

 

Right now, we are together and we are healthy.

 

 

 

And right now, that is enough to make everything feel like heaven.

Pickles Pickles Pickles

Well, if you garden in Oklahoma, it has been a frustrating year.  We weren’t able to get our garden in, but my mom’s garden produced zilch during the normal season.  Now that it should all be finished producing – we’re finally seeing tomatoes, cantaloupes, watermelons, and….

TONS OF CUCUMBERS

So we tried out our jam making skills last year – looks like it is time to make pickles!

The Family That Dines Together

Doc and were so excited that our first furniture purchase together has finally happened!  We eat dinner together every night Doc is home at our dining room table.  On nights he has call or is working, we try to take him dinner and visit him at the call room (not as sexy as Grey’s Anatomy tries to make it).  Eating meals together has been important to Doc and I since we got married, and now we spend at least 30 minutes eating a healthy home-cooked meal every night.

I am happy to say that after 6 years together and nearly 4 years of marriage, we have finally returned my family’s table to them and have our own.  It is “small” size in this photo but pulls out and has a leaf stored that makes the table easily comfortable for 8.  My favorite thing is the bench seat.  It’s perfect for a family full of kids, which we will one day be.  Little Bird LOVES the bench and sits there for meals.  It gives her a little more mobility without her getting up, and she’s less likely to tip it backward.  For our first and last major purchase for a good while, I think it was wonderful to get something that makes way for the future full of happy children we know is out there for us.  Hopefully happy, healthy children.

Pumpkin Zucchini Muffins

I am thankful that today IS a day like any other day, unlike that day 10 years ago.  I am thankful that I can do normal things today and that 10 years after the attack meant to destroy our nation, we are still here.  And when I am feeling blessed and thankful, I bake.

So today I tried out a recipe from AllRecipes.com for Pumpkin Zucchini Bread, only I made muffins.  I used half whole wheat flour instead of all purpose flour and they still taste amazing!

 

It was a wonderful little fall treat to celebrate the cooling weather and the fact that I have a wonderful family who is blessed to have the freedom to believe what our hearts guide us to, speak our minds, and permit each of us to have equal rights.

It’s Hard to Feel Sorry For Yourself

When you think of all the joy you have experienced in your life

Doc and I are working on putting together our second Adventure Book and Little Bird’s Year Two Book.  As we were looking through pictures over the last several years, both of us just could not escape a feeling of intense gratefulness.

How do you see pictures of every good adventure you’ve had and not feel like you have nothing to be sad about, nothing to worry about, and nothing to burden your mind?

We all have rough patches in life.  We all go through hardships and trials.  But those are such small matters when you look at everything you have experienced with people you love.  Just because we know when a rough patch will be coming with Rowan doesn’t mean that we won’t come out of it blessed like we have in the past.  It just means we have time to prepare.

My husband and I are more in love now than we were when we got married.  We are happier together than we knew possible.  My daughter is a joy – even when she’s teething.  We have a beautiful life we are building together.  I have no reason to feel sorry for myself or my family.  I have no reason to be sad.  So until life gives me a real reason, I’m choosing to smile at the beautiful weather, run outside and play with my daughter, and love the joyful moments my family has been blessed with right now.

Peach Pork

Doc and I had tons of family in town this weekend and decided to celebrate all of that love by cooking for everyone!

We had been to our friend’s, Wolf and Louisa’s, a few weeks ago and had the most amazing grilled meal at their place.  Louisa sent me the link and we were off and running! 

We ended up having this amazing “Cook This! Not That!” Recipe that had peaches, bleu cheese, balsamic vinegar, and pine nuts in a sauce to cover grilled thick-cut pork.  Sides: Corn, Rosemary Roasted Potatoes, Asparagus.

With the weather turning cooler, we plan on using the grill a lot more!  I thought I’d share this recipe with all of you because it was such a delicious meal and was super easy to make.

I ended up making twice the amount of peach sauce I needed, so I froze it and will be using it next time I need a quick meal.  All I will need to do is grill the pork and VOILA!

On Their Level

There are many absolutely adorable pictures of children’s rooms online where there is gorgeous child artwork on the walls.  Often times it is on the top half of the wall so we adult have the best view, but I’d like to show another way of doing a child room.  We read an article in one of my education classes that really opened my eyes to the idea of building a world for our children where they are meant to be members and participate.  One of the ways it is highly encouraged we do that is to put photos and artwork on their eye level, particularly in their own room.

We started this with Little Bird when she was 6 months old.  We hung images and mirrors where she could pull up to see them.  Now that she is off and conquering the world, here is what our home looks like.

Little Bird has images she picked out of a magazine of a dog and a cat that are framed by her table.  She often will point at them and tell me what she knows.  “That’s a cat.  Meow!” or “That’s a dog!  Good boy!”  She also has a blue magnetic tray attached to the other wall so she can play with letters.  It works motor skills and also familiarizes her with shapes.  Eventually, we will only provide her with a few letters  and help her spell simple words.

By her bed is a mirror and an actual original artwork purchased for her by our friend’s the Jechs.  She will tell me that it is a tree and often will say “Look! It’s pretty! Wow!” when she sees it as she wakes up or goes to bed.

Her “dresser” is a toy organizer.  On top are framed pictures of family whom she is learning to name.  She also has a touch lamp that she can use when she gets scared at night. 

In the hallway are a few framed pictures, like this one of a bee on a flower.

In our living room there are a few family pictures at eye level for her.

And now that she has a stool and knows how to use it, she is brushing her own teeth and even dragging the stool to climb up and look at family pictures that are hung so Doc and I can see.

 

Fairy Tales for the Modern Little Woman

I grew up with Cinderella and Snow White, the Little Mermaid and Beauty and the Beast.  Pre-teens/teens/way too many moms now have Twilight as a Fairy Tale.  You hear more and more mothers wanting their daughters to have nothing to do with such unbelievable and misleading ideas in stories.

But I think there is something invaluable in a story with a happy ending.  We need those stories of hope and triumph as children to help us persevere through times when hope seems lost as adults.

So what’s the real problem most feminists/modern women have with fairy tales?  For me, it’s the fact that the princess is beautiful and it is her beauty alone that the prince falls in love with – the prince solves all her problems – and she is often completely helpless.

However, there are plenty of fairy tales that are traditional stories that have merit.  Stories where intelligence and cleverness play a role as well.  Here are a few of my favorite.

East of the Sun and West of the Moon

This story is one in which the heroine ruins her chance of a happily ever after, or so she thinks.  She then has to embark on a long journey to right the mistake she made in order to secure her chance with her prince.  She wins not based solely on her beauty, but because she shows dedication, loyalty, and humility.

The Twelve Dancing Princesses

This fairy tale is more of a tale for a prince.  He uses cunning and an invisibility cloak to solve a riddle, landing him a kingdom and a princess and raising himself from the rank of wounded soldier to king.

The Six Swans

This is a story where the prince falls in love with a girl for her beauty – but the real story is the one of the girl who is struggling desperately to save her family and remains dedicated until her task is complete.

Second Wedding Vows

True, we were married for the second time a few months ago, but we wrote our vows on a friend’s PC and it took us a while to manage to retrieve them.  However, I did think I’d post them – just for fun.

Our friend Ashley:

Friends of the Panama City Beach Vacation 2011, welcome to Matt and Elle’s 2nd wedding.

They have decided to renew their wedding vows as a symbol of their constantly changing relationship and of the victory their love has had over the challenges they have faced.

I remind you that marriage is a precious gift; a lifelong dedication to love and a daily challenge to love one another more fully and more freely.

Matt and Elle will now read the vows they have written to one another.

Us:

I, Matt/Elle, still take you Elle/Matt to be my awesome loving wife/husband.

I promise to work with you to build a family filled with love and joy in which we are equal partners in all we do.

I promise to honor your goals and dreams in the same way I strive to reach my own.

I promise to love and cherish you, in sickness, health, and pregnancy/residency.

For richer or for now

For joys and sorrows

Keeping myself only unto you all the days of my life.

Our friend Ashely:

A few final words,

Let your love be stronger than your anger.

Learn the wisdom of compromise, for it is better to bend than to break.

Look for the best in each other rather than the worst.

Confide in your partner and ask for help when you need it.

Accept help from one another.

Remember that true friendship is the basis for any lasting relationship.

Matt and Elle, having renewed your vows here before witnesses on this beach and recommitting to one another, by the power vested in me by an online source, I now pronounce you husband and wife.

You may kiss your wife.

 

Thinking back on these vows – the things we wrote were promises we’d made to each other that we believed made us a strong couple and would see us through any tribulation.  These very promises have helped us maintain closeness and openness throughout our current trial. 

It’s funny how at the time we thought medical school and residency would be our biggest trials.  It’s funny how residency and Doc being gone so much seems so little of a hiccup now.  We have no choice but to be strong for one another, even if we can only do it for the hour a day we occasionally get.

I’m looking forward to our third wedding, where Little Bird and my dear Little Tree can be there to celebrate with us.

A Modern Furniture Oasis

Ok – we went to North Tulsa today.

I found some incredible reviews for a little furniture store called H3 Furniture Inc. uptown that was rumored to have more modern furniture than you can find elsewhere in town.  Don’t let the area it’s in or the fact that they don’t run the AC or heater that often fool you!  As soon as we pulled up I could see beautiful modern living room sets and knew we’d found something amazing!

Within a few minutes of looking, we found exactly what we had been searching for in a dining room table!  I was convinced what we wanted didn’t exist, but here it was, and for a fair price too!  All of the items at this store are prices at what you would expect to fairly pay for a quality piece.  This table is dark brown wood with clean lines, but the cushions are black.  Brown and black – just like our groomsmen wore at our wedding!  It will be perfect in the family dining room we want to reflect the day we started this new little clan.  Not to mention, it is 4 chairs and a bench!  Benches are amazing when you need flexible seating numbers and are pretty easy for Little Bird to climb up onto with less risk of tipping it over.

If you get a chance to go in and see this place, it’s worth the trip, even if you are just window shopping!

August 16th

Happy Birthday to Doc!  I’m so sorry he had to work a long shift and our date night didn’t happen like we’d hoped.  We will make up for it on a fake August 16th.

Boo to my car being smashed on the passenger side.

Screw you to the rude person I talked to on the phone who was extremely insensitive.

Ugh! To the motorcycle accident that put my dad in the E.R. (he’ll be okay, he’s just banged up).

Hurray to the fact that I have wonderful people at work who can help me quickly locate a way to take care of my child when I have to attend meetings the next day.

…sigh….

I’m so happy my husband was born 27 years ago.

Today however…

Today kinda sucked.

Have a Pinterest?

For those of you that have already joined the amazing world of www.pinterest.com, you know how helpful this can be for those of us who like to have a visual inspiration for projects. 

Many of us are decorating homes, looking for DIY projects, trying to figure out how to make your family portrait NOT look like the same ole’ same ole’ – well here is a wonderful resource!

You can “pin” photos you are “interested” in (get it) to different boards to have a visual display of things you love in that category!

For example, I’ve been trying to find maternity photo inspirations to show my amazing photographer from B. Photography.  I can search tons of pictures and put together a board of inspirational photos so that we can plan the shoot.

You can see My Inspiring Maternity Photos.

All you have to do is request an invite and soon you can be putting together your own incredible visual idea board for anything you can imagine!

Happy Pinning!

Back to School

The air is getting cooler! It was 86 yesterday. The smell of freshly sharpened pencils is in the air, number lines and bulletin boards are hanging, and Little Bird has a new lunch pail, backpack, and a few little outfits for her first foray into preschool.

I think it’s actually really neat that she will be going to the same preschool my brothers and I attended when we were little.  She will have tons of outdoor and gym playtime as well as structured thematic units and will go to music every Wednesday. 

Little Bird will go to preschool three days a week, which is wonderful as she is showing a higher and higher interest in playing with other children.  She particularly seems to enjoy handing her little cousin blocks to play with and picking them up when he throws them, so I’m willing to bet she ends up being the motherly one in her class…when she isn’t jumping off the cabinets and scaring the hell out of her teachers.

Speaking of scaring the hell out of teachers, my classroom is almost ready for my new crop of 60 bright eyed fifth graders.  I added a few new “tricks” this year.  For example, I’ve eliminated the chance that a student might forget to use a red pen to grade instead of a pencil and accidently change their answers by attaching big flowers to the ends of a class set of grading pens.  If you aren’t grading with a sunflower…I WILL KNOW!

Second, I’ve put a strip of blue duct tape around all of my person supplies like pens, pencils, dry erase markers, and sharpees.  I have no qualms with loaning out my materials to students, but they often forget they borrowed it and then I have nothing left to use at school – so I’m hoping the blue strip reminds them to return it!

Also, a Twitter board went up!  We have interesting articles from Tween Tribune, an online magazine for 9-12 year olds posted in the hall with a folder of post-its mounted next to it.  Students can write their thoughts and post them, almost like comments, onto our board to get them interacting with one another through the bulletin boards in our room. 

Check here for my favorite article!

New Blog

I wanted to start a new blog specifically geared towards our situation with Rowan’s heart.  This allows me to share our journey in a separate location.

Please visit

Within Each Heart

to see updates.

Pathway to Peace of Mind

Original post date – August 8, 2011

Well, I decided I was done throwing my pity party – though I fully believe I was entitled to it.  I’ve got my war face on and I’m ready to approach this with the strength and courage that is necessary.  I haven’t shed a tear in 3 days and I am starting to enjoy being pregnant again instead of feeling like I’m a time bomb for disaster.

The right frame of mind can make any struggle bearable.

So for those who find themselves in a situation where they don’t know how to handle what has been given to them, here’s what helped me out.

Fake it ‘til you make it – talk to other people about your situation in a positive manner.  Don’t let those “what ifs” seep into conversation.  My baby is going to have some time in the NICU but it’s amazing what doctors can do today and we have an incredible team assembled.  It will be rough, but he’ll be fine!  My son will be trying my patience before I know it!  You say it enough, you realize you truly believe it.

Zen your home – keeping my house clean, throwing out trash, listening to quiet music, keeping the TV off as much as possible, keeping the lights dim – all things that create a copable atmosphere where you are much less likely to be totally overwhelmed by something and journey back to “what if” land.

Make jokes – if you can joke about it, it’s going to be fine.  Doc and I have made many a jokes about Rowan later in life – about how one day he might get married and swear to love someone with all of his donor’s heart for as long as his body doesn’t reject it – or about how we’ll tell him to stop doing everything so “halfheartedly”.  Is it kinda inappropriate?  You bet!  Bet making jokes like that helps you really believe that you may get to a point in your life where those jokes are okay.

Plan for success – focus on what you need when everything goes right, and plan like it will.  Don’t play the “what if” game and let it keep you from doing what you would normally.  I will still have my shower at work that the dear ladies throw.  We will still do maternity pictures, and I will still light up and beam with joy when people ask me how far along I am or tell me how beautiful I look.  AND Doc will still roll his eyes when I get super excited at little boy clothes.  I’m so excited to meet my son.

Appreciate those around you who are amazing right now, forgive those who aren’t – not everyone knows what to do in these situations.  They don’t all understand that you don’t know what you need help with and they just need to take tasks from you and do them, or that they need to check up on you and let them know they care frequently because that support is invaluable.  Be blessed to have friends and family that do leap in and understand that just because some don’t, doesn’t mean they wouldn’t…it just means they don’t know what to do, and when you get better at asking for help, they will be there!

Forgive yourself – you aren’t at your best right now.  Don’t expect yourself to be.  Forgive the laundry you forgot about or the one time you yelled at your child because you were overwhelmed.  You are allowed to have moments of weakness.

We meet with the Pediatric Cardiologist Thursday – we will have a shopping list and game plan ready at the end of that meeting.  I’m excited to be meeting another part of the team and I’m going into this meeting with a peace about our situation and a readiness to prepare.

PSO and City Water

PSO is suggesting that rolling blackouts may be necessary to combat the high energy usage of everyone trying to keep their homes cool in this heat.  The city is worried that rationing of water might be a reality very soon.

AND STILL

Some of my neighbors are watering their grass twice a day!  Now I understand watering flower beds, especially if you invested in some nice landscaping, but if you have lush green grass right now, think about what you are doing.

The city has asked that people reduce their watering to every other day – totally reasonable.

PSO has asked that we do such things as never set our thermostat below 80.  Well, that isn’t happening because pregnant doesn’t do well with that, but I do raise my thermostat up during the day to 78 and we turn it back down at night when everyone is here.

We water twice a week – just trying to keep the grass alive.

We’re trying to reduce what usage we can right now.

Which is nice, because we are trying to save what we can to make sure we can afford to pay for the care our little one will need when he gets here.  A teacher and an intern make enough to live comfortably for sure, but when you don’t know the extent of what your medical bills will be, it’s pretty darn scary – so anything we can save, we will save.

FML

Well, good news yesterday, bad news today.

My little man likely has Transposition of the Greater Vessels.  This means that it looks like his Pulmonary Artery and Aorta might be hooked up to the wrong sides of the heart.

There are some problems that come along with this, but essentially what we understand this likely means is that his first surgery will be much more complicated, but that surgery will fix the arteries.  This is still fixable, just a little more intense.

I'm clinging to the fixable.  I can withstand all of this is I can still hold out hope that he will be okay in the end.  The only problem is, every little obstacle that shows up makes me feel like that hope is slipping.

Once again, when we meet with the Pediatric Cardiologist on the 11th, we are hoping to have some more answers.  I'm starting to wonder though, if this will require us to visit another city for our delivery and for Rowan's surgeries. 

I had a bit of a breakdown today.  Thank goodness my mother is here to help.  She is taking care of Little Bird while I get my shit together.  Doc told me today that I need to let the people in our lives take care of us for a little while so we can take care of Rowan.  I'm trying to accept help and not let it make me feel like a failure. 

Thank you to my wonderful coworker who decided to decorate my classroom for me and to the ladies who arranged all my furniture in my classroom.

Never Been So Happy To Have A Nurse Call!

Because they call when tests are normal!

I think it was worth all of the horrible discomfort from the Amniocentesis to know that Rowan does NOT have Down Syndrome or any other DNA problems associated with heart deformities that they tested for.

He’s also 100% a boy, as if the giant thing between his legs didn’t make us feel confident enough at the ultrasound.

So, I have ever reason to believe that Hypoplastic Right Heart is what we are dealing with, and the only major obstacle we foresee.

So I’m off to create an Amazon Wish List!  He will only be able to use certain things in the NICU and with his scar/monitors, so we are holding off on buying much until we get a list of what he can use from the cardiologist/NICU staff.

I tell ya what, I have never been so damn excited to get a test result back.  First good news in a while and it feels great!

Halfway!

We have officially made it halfway to meeting Rowan!  20 weeks and some change.  Odds are, we are more than halfway but a little bit as they will most likely schedule his delivery earlier than my due date, but it's still exciting. 

Life is returning to feeling a bit more normal.  I went up to work to check on the situation my classroom is in today, Doc is gone most of the time, and soon I'll be busy enough that time will fly even faster.

I still very much feel the big looming cloud of our appointment with the Pediatric Cardiologist weighing on me, but I'm trying to enjoy the time I have left with Little Bird before school starts.

We have so many things to look forward to before we meet our son - time to start getting ready for fall and halloween and cooler weather

Karma

There were moments when we first discovered that Little Tree had some problems that I wondered what I had done in life to have deserved such terrible repercussions.  What did I do that was so bad that I deserved to lose a child and then have another who would have to fight so desperately hard during his childhood for his chance to live.  What did my son do to deserve this?

And now as I think on it, I was looking at Karma the wrong way.

The Karma that I am experiencing right now isn’t bad karma, and it isn’t present in the form of the bad things that are happening, but in the form of the overwhelming love, support, and help I have been receiving during this.

I don’t think God or the fates or the universe caused these bad things to happen.  But I think maybe, if we take care of those around us, and we try to be helpful and kind, we will find that when bad things do happen to us, Karma will come around – and prove that we are not alone.

Fetal Echo and Amnio

Original post date – July 27, 2011

Today we returned to the Perinatal Specialist who preformed our ultrasound last week.  This week, they did a Fetal Echo of Rowan as well as doing an Amniocentesis on me.  The Fetal Echo mapped out Rowan’s developing heart and looked at the direction and strength of blood flow.  This will hopefully give the Pediatric Cardiologist a better understanding of Rowan’s specific case with Hypoplastic Right Heart.  The Amniocentesis was a bit of an ordeal.  Once the needle went in, I started having contractions, which is not horribly abnormal, but is horribly uncomfortable.  They had to dig around with the needle a fair amount to avoid problems and I am feeling incredibly sore now.  The purpose of the Amniocentesis is to look at Rowan’s DNA.  Some heart defects are a result of a chromosomal abnormality, and we want to make sure that is not the case with him.

We don’t know when we’ll get results back from these tests, but we signed  a medical release so the results could be faxed to us and we will have the reports to read over ourselves.  I also have an OB appointment next week, at which point I imagine we will discuss some of what we know.  I still think it won’t be until we meet with the Pediatric Cardiologist August 11th that we have real answers – and they will probably be vague.

Rowan looks like Little Bird, but slightly different.  I can see so much resemblance.

The more I have read about other families and their experience, the better I feel about our chances.  We have an amazing team working with us giving us ever chance of having the best possible outcome.  It’s just hard not knowing what exactly the best possible outcome is.

Coping with a Kid

Children are highly intuitive.  This is one of the hardest things for me right now about being a mom.  I am feeling much more optimistic about Rowan’s future and the future of our family.  However, there are still times where I feel so overwhelmed I can hardly keep it together. 

Reading a book with Little Bird where she points at the baby on the page, and then points at my tummy and says “BABY!”

Seeing Rowan’s clothes in a box in our room.

I just get teary – and when I’m alone with Little Bird, me being upset translates to her being extremely unsure of her environment. She cries more, feels less comfortable being in a different room than me, wants me to hold her more often (which is not okay for me to do anymore).

I keep reminding myself that I have to stay calm for her.  I don’t ever want to make a child deal with adult problems.  This is something she will have to deal with when Rowan arrives and should not have to deal with it now.

So -

I’m cutting myself some slack.  We’ve been cuddling up watching movies together.  We take our time getting things done right now and try not to be in a rush so that I don’t get stressed.  If I do get upset, I tell her “Mommy is sad today, but it’s okay to be sad sometimes.  Let’s go get a drink/build some blocks/sing a song to help us not be sad.”  I’m putting less pressure on myself to be supermom in the next few days, and just letting myself be “mom”.

Humble

The last few days have been emotionally very difficult.  Many of you know that Doc and I experienced a miscarriage with our first pregnancy.  At that time in our life, we did not have family nearby who could offer support.  Our friends did not understand the weight losing a child could hold.  When we first received news about our son, I never expected to have such a different experience.

We have been so grateful for the overwhelming promises of support and outpouring of encouragement and love from friends and family.  All of your calls – flowers you sent – trips you are planning to be with us – scheduling to be here for us in December and March when we will need it – it has been the most heartwarming, comforting, and humbling thing I have ever experienced.

You are giving us the strength we need to get past the heartache and move into the place of preparing, finding peace, and believing that despite how hard the coming year will be, we will not be alone.

Thank you.  You have no idea what this has meant.

For those of you who have been asking what you can do now – we need the encouragement you have given, and often – so please, keep it up.  We need the reminders that you will be here and we will not be alone.  We need the diversions of visits or invitations to remind ourselves that life can still be normal-ish.  And if you know anyone who has had a child go through something similar, we’d like to hear their stories.

Day 5–Mommy and Little Bird’s Day Out

Even though we were really loving our time with my family, with me being pregnant, driving up into the really high altitudes wasn’t a good idea for us – and it’s a really fun trip for the rest of the family.  So Little Bird and I decided to spend the day – just the two of us.

We got up early and drove into downtown Estes Park.  Estes Park is a beautiful little town right outside Rocky Mountain National Park.  Their downtown area is full of little shops, creameries, chocolatiers, cafes, art dealers, etc.  We walked and looked in shop windows.  Little Bird loved the Native American art shops the most.  She loved some of the ornate bead work.

We stopped in a souvenir shop and bought a fleece a few sizes bigger than the one Little Bird wore this trip so she’ll have one for winter and our son can wear her old one.  They’ll match!  She also picked out a little orange and brown onesie with a moose on it for her little brother.  She told me “for a baby'” and carried it around the store until it was time to go.  She was very excited, and definitely knew it wasn’t for her.

Then we stopped at a chocolatier and bought a few little treats.  We sat on a bench to eat them together.

 

After that, we were ready to head back up into the mountains.  Trail Ridge Road goes all the way along the spiny ridges that separate the eastern and western sides of the park. 

 

We drove up to the first stopping point to see Pika, Chipmunks, Birds, and Marmots.  Then, we drove back to camp for naptime.  When Little Bird and I woke up, we explored the rocks and meadows near our camp, learning words, feeling the textures of our environment, and just enjoying our alone time.

It was a wonderful end to a fantastic trip.

We Interrupt Our Normal Broadcast…

For some kind of crappy news…ok, well, super crappy.

We had our 20 week ultrasound Thursday.  It didn’t go well.

Our son has what is known as hypoplastic right heart syndrome.  We are looking at a lot of testing in the near future to figure out what our exact situation is.

Our current best case scenario is that when he is born, he will be taken into his first of 3 open heart surgeries.  1 at birth, 1 at 3 months, 1 at 4-5 years.  If we are lucky, that will be it.  Some of the children with this heart defect will require a heart transplant sometime between the ages of 15-30.

I’m terrified.

I can feel him stretch, and kick, and wiggle around just like a normal fetus.  But he will not be able to survive after birth without serious interventions and a likely long stay in the NICU.

We are summoning our courage.  We will learn all we can.  We will prepare.  The road will be rough ahead, but we have to find the strength to be guides to our daughter and to our son.  We have to teach them strength and courage and love.

To my son -

We love you.  We will be your strength and comfort.  You will never be alone.  We will have you and hold you.  You may be in the hospital for a while, but you will come home.  You will grow.  You will crawl.  You will walk.  You will never play football, but let’s face it…we knew that already.  You will live a normal life with a few extra doctor visits and a few surgeries.  We will get through this.

Day 4–Bear Lake Trail, Smores, and Sunset

Out of respect for hygiene, we went into Estes Park to use the showers a Dad’s Laundry in town.  While there, we did some laundry to get rid of all the food smell on Little Bird’s clothing (so as to keep bears away) and did some shopping at the grocery store for take along meals.  By the time we made it back into the park and up to Bear Lake Trailhead, it was already lunch time!  Little Bird and I climbed onto some nice cozy rocks to eat our sandwiches.

 

Bear Lake is a nice easy trail to walk around. 

 

The entire lake is actually handicap accessible, and from here you can head up on a 5 mile hike to see other beautiful lakes, and even take the adventurous 11 mile hike Doc and I braved 4 years ago when we were last up here. 

 

 

 

 

I hiked the Lake, while Little Bird hiked some, but did receive a little bit of assistance from a very willing Grandpa.  We saw lots of birds, fish, and of course, chipmunks and ground squirrels.

 

 

 

 

 

After all that excitement, Little Bird was fully ready for a nap.

 

 

Later that evening, we made smores at the campsite.

 

 

Then it was off to see the animals that come out at sunset! (No, she didn’t really get to ride here, but the idea sure excited her!)