Friday, December 28, 2012

A New Kind of Beautiful

I recently had a friend text me.  She said that it is both a beautiful and hard time for me right now.  She is right.  But on that day I texted back, "Today it is just hard."  She is one of those friends where you can be brutally honest, so I was.

We have had a lot of "just hard" days.  Death and dying sucks.  I haven't wanted to write a post because I don't want my blog turn into this whiny, depressed, instead I have stayed quiet for a little bit, and wept and grieved with my family. 

It was really great to celebrate Christmas with my sister in town.  Once again I needed to shift my expectations.  One of the biggest side effects of the heart failure that my mom experiences is exhaustion.  So she spends a good deal of time sleeping, or trying to sleep.  So I tried to be grateful for every awake moment we had on that day.  My mom also really struggles with eating right now.  She has a lot of nausea and vomiting, and food rarely sounds good to her.  But on that day she had two "helpings" of Christmas dinner.  I laugh because her two helpings barely touched the one helping I had, but it was a small celebration none the less. 

Saying goodbye to my sister was hard.  Every time I leave my mom's house it is hard.  Many times going to my mom's house is hard.  It feels as though we currently live in this deep valley.  While I want to run out of it with all my might, I also want to sit in it forever because I know my mom won't make it out with me.  Mom-I will sit in this valley with you as long as you need.  I will sit in the discomfort and the tears.  I will sit in the sadness and the pain.  I will sit right here until you are called home.

My mom has kind of plateaued.  She is still really close to dying, yet in the same breath not quite there.  It is hard with heart failure because 50% of the time, it is an arrhythmia that can start at anytime which would take her life.  This is what I want and what I am rooting for (please forgive the fact that I am a wee bit morbid).  The other half of the time death is caused by pump failure.  Earlier she seemed to be consistently declining, but now we have some what leveled off in a shitty place.  It is as though her body now holds her soul captive, and I pray often for it to be released.  I pray for her to be able to go home to heaven all the time.  I pray for this season to be over and for the ability to climb out of the valley.  I pray because I want her to have peace.  Pain free peace. 

Until then I try to hold onto the fact that God is the giver and taker of life, and his timing is perfect.  I also try to convince him that now is a good time.  My mom told me the other day that she is ready for this all to be over.  I agree.  So I will continue to plead with God to take her home, and I will continue to absorb every last hug, memory, tear, and breath that I have with her.

Jon's mom was kind enough to bring over his ornaments from his tree growing up.  Many people know that I am an ornament snob.  The ugly ornaments go in the back, if they even make it on the tree, and all the visable ornaments are glass or metal and shimmer and shine in some fantastic way.  My mother passed this lovely trait on to me, and because of it my tree is freaking beautiful.  As Jon went through and reminisced about his ornaments, I bit my tongue as he hung them right in the front of the tree.  He knew the rules.  In that moment, I had my internal battle (I have a lot of these) where I debated about moving the ornaments when he went to sleep or letting them be.  I'm sure in the future Grayson will make me some hideous ornament that I will love because he made it, and I would eventually have to let go of my ornament snootiness, but I didn't think I was going to have to do it this year. 

Maybe it is  because of how much we have had to grow this year, but I left the ornaments on the tree, right where Jon had put them.  And looking at them now, I can see how they are a new kind of beautiful.  I can see how our lives are a new kind of beautiful.  Celebrating the fact that my mom ate dinner is a new kind of beautiful.  Getting over the fact that I still carry most of my pregnancy weight and starting to accept myself is a new kind of beautiful.  Looking at my skinny momma while she sleeps right now and appreciating the fact that there are no tears streaming down her face is a new kind of beautiful.   In the past I would never have called this season of my life beautiful, but slowly I have learned. Just as I have learned that there is a place on our tree for ugly ornaments, slowly I am learning that this season is a piece of my life and my story. 

So my friend was right.  It is a beautiful and hard time for us right now, sometimes I just need to reframe it as a new kind of beautiful.

Tuesday, December 18, 2012

One more day

All I want is one more good day.

My sister was able to come in from North Carolina.

Feel free to cry happy tears.  I did.

Tomorrow we are celebrating Christmas as a family.  We are going to make at least one ginger bread house, and eat Christmas dinner together.  One last time.  It really sucks that it will be our last Christmas together, but I am so grateful to have one more day with everyone under one roof.

So I am pleading with God for one more good day.  One more day for my mom to have a little bit of energy.  One more day for her to have her pain under control.  One more puke free day.

Please don't get me wrong.  I would like hundreds of more good days.  But, I am pleading for just one.  Because I know that once my mom goes home to Jesus she will have millions of good days.

Facebook lets you do your "year in review."  I think I barfed in my mouth when I heard that.  Reviewing and reliving this year sometimes feels like the last thing I would ever want to do.  How in the world did it all happen?  How did I practically live in hospitals with my mom for a couple months sleeping with my big 'ol pregnant belly on pull out chairs?  How did I watch my mom almost die three times, to only have to watch it in slow motion all over again months later.  How did my once young and healthy mother get admitted to hospice?

But then I slow down, and I start to reframe.
How did a community of people, both near and far, encircle my family with prayers and pictures?  How did people love us enough to donate money to a fundraiser to help us survive?  Why did so many people drop whatever they were doing when I sent out our desperate prayer requests?  How did so many people join us in the fight for my mom's life?  How did coworkers know exactly what I needed?  How did I become a mom?

I could ask "how" and "why" forever, but it doesn't matter.  In two weeks time we will be in 2013, and this year will be over.  The book will be closed on what might be both the best and the worst year of my life.  For one reason or another, this was my path to walk, this was  my family's path to walk, and we were blessed enough to not have to walk alone.  I will never be able to change 2012, so instead I will let it sear into my heart.  I will let the pain hurt, and I will feel the joy.  I will remember it all and let it mold me and shape me.  I will say prayers of lament and gratitude.  And all in all, we will be better for it.  I have learned to laugh harder, and cry louder.  I have learned to love deeper this year, and for that I am grateful.

Sunday, December 9, 2012

Not a Normal Christmas

My church just did a series entitled, "Not a Normal Christmas."

This year is just that for us.  As the holiday season continues to ebb and flow, my mom continues to decline. And while normally this season brings me great joy and excitement, I am instead filled with sadness and honestly some anger. Tears seem to come readily now and I try to cry at least once a day in the safety of my shower so that I don't explode at a more inappropriate time.

The holiday season magnifies emotions.  The happiness is extravagant and the sadness is painfully deep.  Celebrating Grayson's first Christmas while coming alongside my mom as she dies is a tricky dance.

My youngest sister is flying out on December 17, so my hope and prayer is that my mom is able to live and to not decline much until that point, but honestly after my sister has some quality time with my mom, I hope she can go home to Jesus soon there after.  As I have said so many times before, we want quality, and we have really lost that.  My mom has a great deal of unmanageable pain in her foot and her shortness of breath is really starting to take a toll.  My once strong mom has been broken down.  I am ready for her to go to heaven and have her body restored.  I'm ready for her soul to be renewed as the exhaustion and pain has worn down her spirits as well.  I'm ready for my mom to once again be made whole and complete.

This is just not a normal Christmas.

I am not ready to not have a mom.  I know that time can heal and that we have so many people ready to step in and love us however we need, but there will always be that hole. That hole that only she can fill.

In the midst of the sadness and anger is so much love.  I will forever treasure the memories I have of my mom and Grayson.  The kid naps with her like no other.  She will forever be the baby whisperer.  I will also cherish the many little moments I have spent napping besides her, or simply saying nothing as the tears would stream down both of our cheeks.  I know she loves me and she knows I love her.  Sometimes you just don't need words.

I told my mom the other day that we will be O.K.  We will.  My sisters and I will keep marching on and slowly we will heal.  We will band together and hold each other up.  Jon and I will make it through 2012 and 2013 better be boring as hell.  He will hold me when I cry myself to sleep.  Grayson will be told stories of his   Nanny that he won't remember but he will know how much she loved him.

While this is not a normal Christmas, I am grateful for it none the less.  I am grateful for the time that I have had with my mom and I will be even more grateful when she is able to celebrate Christmas in heaven,  whole and complete.

I'm glad this little cutie can keep us smiling.

Saturday, December 8, 2012


Sorry I have been absent lately.

I have been kept busy by my sweet baby boy.

My mom isn't doing very well.  Could you please pray for us as we walk through this very difficult holiday season?  Can you please pray that her pain in her foot and tailbone/hips improves?  Will you please pray for peace as my momma goes to meet Jesus?

I will be back as soon as I have more monumental things to say and share, but right now I just want to take in all the time with my mom and my babe that I can.

Saturday, November 24, 2012


There seems to be too much riding on this post, and the words and the language that I have do not seem sufficient.

My gratitude for our Thanksgiving experience is abundant.

In the midst of immense joy is a great deal of sorrow.

How do you blend it all together?  Like a margarita?  I could go for one of those.

My mom had a great day on Thanksgiving.  She was the momma that I know and loved.  While we brought together new normals of taking naps and rest, with hanging out with family, it was so good.  It was so good to see her laughing, joking, and in the middle of everything.  It was so good to see her with those that love her so deeply.  It was so good to see her in her skinny jeans with her skinny legs.  It was just good.  No, actually it was great.  At the same time it was so bitter sweet knowing that it will most likely be the last Thanksgiving I get to share with my momma.  That just stinks.

So we savored it all.  We savored all the baby snuggles, and all the giggles.  I lied down with my mom when she was resting just to take in another hug.  Because it was my birthday and I could sleep if I wanted to.  Plus there were tons of open arms to love on sweet Grayson.  The only thing that could have made it better was if my youngest sister could have been here.  I am really looking forward to her moving home.

In years past my family would go bowling after dinner.  Normally everyone is spread out at different family functions and it was a way for everyone to come together.  My mom started this tradition many years ago with all my cousins.  She was the cool aunt and closer in age to my cousins that my aunts and uncles.  We didn't have bowling this year.  A part of me was so sad.  I was sad leading up to Thanksgiving knowing my mom wouldn't be able to go. While part of me was sad that no one was really pushing to go, another part of me felt a lot of peace around it.  Jon was getting sick and Grayson was ready to go home.  And ultimately, I didn't want to go without my mom.  Everyone had already been in one place for what really mattered.  We had already shared a meal and hugs and love.  It felt complete.  So while I am sad to see things change, it seemed like a healthy ebb and flow.  I really couldn't have asked for a better last Thanksgiving with my mom and my new son.  It was perfect.  Thank you to all the family members who contributed, and my aunt who hosted, as only she could.  Holidays at my Aunt Bev's are magical.  Just saying.

So we will revel in the magic a little bit longer.  I will hold onto the memories for a lifetime.

I also spent a lot of my Thanksgiving thinking about and praying for my friend, Amy.  Her blog is on my sidebar.  She is one of my really good friends at work and was the best doula a girl could have asked for when giving birth.  She threw and amazing shower for me and sweet Grayson and has prayed so many prayers for my mom.

Being a work friend is a hard place to be in a time of crisis.  I don't really know any of her family or her support network.

Amy developed a very serious infection in her leg before Thanksgiving was admitted to the ICU at the hospital we work at.  She was then transferred to another hospital due to how critical she had become.  She has had at least five surgeries and is really sick.  She has been in the fight of her life, and I wish there was more that I could do than fall on my knees and pray for her.  Will you please join me?  They feel that she has turned the corner with the infection, but she has a long road of recovery ahead of her and is not yet completely out of the woods.

I am so thankful for Amy and all of her support through this rough season in my life.  She has been a true rock at work and I look forward to being able to continue to develop our friendship over years to come.  Please pray for healing for my sweet friend.  Amy is getting married in May and it will be a great celebration of her life and family.  I cannot wait.

Jon's birthday was the day after Thanksgiving and even though he is sick, we were able to put up our Christmas tree and spend a day as a new family.  My heart is just so full.  I love when Thanksgiving falls on my birthday, because it is then the longest Christmas season.  While I love Christmas itself, I love the advent season even more.  I love preparing.  I love the salvation army bell ringers.  I love the snow and present wrapping.  I love the giving.  I love what the season truly means.  

This season will be a little bit different.  I will try to slow it down even more than I normally do.  Whenever I think about this time in our lives I always come back to the word "rich".  It is hard and scary, it is filled with great Joy and significant hardship.  Through the ups and downs, it just feels like we are truly living and living with abundance.  There is so much meaning in our lives right now and it feels rich.  Thank you for contributing to that.

Friday, November 23, 2012

What I Wish I Had Known

Here are a few little tid bits I have learned in my 5 weeks of having my sweet boy.  Men should stop reading as I am going to whine about many things baby body related.  Tomorrow I will be over it.  Promise.

1.  You will do anything for sleep.  I break all the rules.  Sleep with me, sleep on the couch, sleep upright.  I don't care.  If he will sleep, I will do it.  Sleep deprivation is a strong tool and babies know how to work it.

2.  While I can toot my horn about how I am saving the planet with my cloth diapers, I am killing it with all of running water.  Grayson stops crying when the bath runs or the dishwasher.  I am considering taking up sleeping on the kitchen floor.  Sorry fish, this momma gets desperate.  For a while the YouTube video of running water worked.  It's starting to lose it's appeal to my lovely, at times cranky child.  We need a new trick, we need a new trick right now.

3. While I would say that I am a more cautious driver, I more often appear like I am driving under the influence.  I also despise red light cameras.  My child is not a lover of the car.  He will tolerate it, and he tolerates it better when we are moving.  Therefore, I sway back and forth and blow red lights like it is no one's business.  Evolution was wise in that baby cry.  I will do ANYTHING to soothe the beast.

4.  Breastfeeding sucks, or it is at least not easy.  I am still hoping it will get better, and I am guessing a lot of it is situational for us.  Let's just say I am not the most endowed person on the planet.  And apparently stress can affect your supply.  ha. Let me just get rid of all of that in my life.  No problem.  Sure I will rest more with my screaming child because sleep can help you successfully breastfeed, you bet.  So between the nursing, pumping, and the fact that we are still supplementing, I am feeling a bit defeated.  I have been in contact with all my lactation friends and we are doing everything to make it work.  I keep telling myself to be flexible and that hopefully my boobs will magically get on this boat and it will be easier.

5.  Poop explodes.  I knew this.  One morning I hear from Grayson's room, "UGH, I covered the rifle, and not the cannon."  Jon learned.  Since then we still have had poop and pee his the wall.  Nasty sauce.

6.  It takes a long time to feel like yourself again, physically.  From the extra fluff to the healing parts, having a baby is hard.

7.  Hormones are a beast.  My kids hair is falling out, I might as well cry about it.  I can't do the laundry one day, more tears.  My poor, poor family.

8.  Remember that I am not well endowed.  The very expense Pea in the Pod store does not make B cups for nursing bras.  Yep even when nursing some people do no get huge boobs.  It's quite the bummer. And while I can fit in the bigger sizes now, I am still hoping to drop some of these lovely extra lbs, and which point I think those expensive bras will be too big. I went there the other night to buy a nicer nursing bra since my target ones are getting beat up in the wash (and since I cannot manage do to the laundry with machine there is no way I am going to hand wash my bras).  So I went to the store all ready to spend too much money on a bra, and what do I learn, they don't make my size, so I am relegated to the bras that come in S, M, L.  jerks.  (Side note, the make 34 EE.  Seriously?  So I need to get some implants to successfully feed my child.  Noted.)

OK, I am done with my T.M.I. rant.  Going to write about our wonderful Thanksgiving in the next couple of days when my lovely child gives me a few moments of peace to do such things.  Everything is a season (deep breath) everything is a season.

Wednesday, November 14, 2012


I live my life with a lot of unrealistic expectations.

Granted, I think that some of these unrealistic expectations are what motivates me.  My husband and I have a lot of drive, we like to run to the next best thing and pursue growth and success.  Unfortunately we do these things to a fault.  We tend to be overly busy and probably miss a lot of really great small moments if we aren't careful.

My expectations have been rocked as of late.

I thought that having a baby just meant adding more love and joy to your life.  Sure I would be a little sleep deprived, and sure it would change our marriage.  But really, I like challenges.  Bring it on.

Little did I know that I pushed out my brain with the child.  I didn't expect to be completely overwhelmed by laundry, or to be dumb enough to put the registration sticker on the wrong car so that my husband came home with an expired license ticket.  Nope, didn't expect those things.  I did expect to drop all my pregnancy weight instantly, too bad that didn't happen either.

I also didn't expect my momma bear instinct to come out so strongly, or for this little guy to be able to melt me so quickly.  Of course I knew I would love my child, but I did not understand the meaning of the word "smitten" until he came into my life.  Grayson, mommy is truly, and utterly, smitten with you.  From your chimples (he currently has chin pimples), to your snorty stridor when you eat, I cannot get enough of you.

I also did not expect for the birth of my son to make me fall more madly in love with my husband.  We are not the mushy gushy type, so that previous sentence sounds a bit cheesy and fake to me, but it is completely true.  Seeing Jon love our son has given me a whole other side of him to get to know and love.  Watching him step up during the delivery and in my mental break downs there after, has shown me how far we have come from the high school prom couple we began as.  I am so grateful that instead of growing up and growing apart, we have grown up together.

When my mom had her original heart attack, I expected her to make a full recovery.  I expected her to bounce back and for our lives to continue basically as they had.  I was grateful for my rude awakening into how I need to appreciate life, but really, not much was going to change.

That expectation has be shot to high heaven.  Over the course of my mom's last few months of her life, I have continually had to learn to shift my expectations   And honestly, I suck at it.  I don't know how to find the balance between having hope and faith, and being realistic.  I tend to function in the "set your sights low to be pleasantly surprised mentality." But time and time again, God has proven to me that this does not serve me and is not the best way to live my life.

I can remember being annoyed when they wanted my mom to use a walker.

Please excuse my overly honest statement.  I didn't want a disabled mother or grandmother.

I wanted my hip, cooking, gardening, 53 year old momma back, and all in one piece.  Thankyouverymuch.

Obviously, my expectations have changed.  I will take and celebrate the days when my mom is able to sit up in bed or come to the table to play cards.  I will celebrate the days that she doesn't puke and feels like herself.  I will celebrate every single snuggle she gets with Grayson.  I will celebrate my mom because she is so much more than those hip things I once thought defined her.

This limbo land between life and death is a hard place to have any expectations.  So instead I am going to try to hold onto the moment.  To take absolutely nothing for granted.  Which is why yesterday I took a three hour nap with my mom and my son.  It was perfection.  I cried afterwards because I don't have a way to bottle that up and give it to Grayson later in life when he can remember it.

Moment by moment we will walk through this holiday season.  Lots of tears, hope, and love await us.  What a difficult but truly rich and meaningful road.

My mom took this picture of Grayson and I.  I love it.

Tuesday, November 6, 2012


OK, it hit me.  I powered through the weekend focusing on the tasks and the science of everything that was happening.  I went into nurse mode, well mama nurse mode, but nurse mode none the less.

A minute ago I gave up nurse mode.  There was some sappy moment on T.V. and when I picked Grayson up and felt his warm breath on my neck, I lost it.  I let the hot tears stream down my face and stain both of our cheeks.  I fell into Jon's arms with our sweet babe in between us and I let the fear, and the hurt, and the anger, and the sadness set in.  For the first time since Friday, I let myself really feel again.

Now, I realize that so much of what happened over the weekend is temporary.  The procedures and the tests are not permanent, and I take great comfort in the fact that Grayson will not remember this weekend.  My heart aches for the parents where hospital visits and PICUs and NICUs are more long term fixtures in their lives.  Because it sucked.  Absolutely and utterly sucks to watch your kid endure pain that you cannot take away from them when they are such little peanuts.  I am incredibly grateful that we were in a PICU, where it was the expectation for Jon and I to be present on a continual basis.  I have a new appreciation for the special care babies I take care of and the parents that have to leave.  We don't provide beds or complementary parent meals.  All our babes are in one room and parents come and go.  I cannot fathom leaving Grayson over a weekend like this last one has been.  Those parents have an incredible amount of strength and are not given enough credit.

On Friday Jon and I were getting ready to take Grayson to his two week doctor apt.  He had fallen asleep while playing in the swing and when I came out to grab something I noticed he looked funny.  I started counting the seconds that I wasn't hearing him breathe, and gave him about 15 before I stimulated him and picked him up.  He had turned dusky in his deep slumber.  Again, nurse mode kicked in.  I wanted to give him a chance to recover on his own, but I wasn't willing to give him any longer to try and figure that out.

Since we already had a pediatrician apt, we decided to just head that way, because we wanted the doctor to hear the stridor Grayson has been rocking, pretty much since birth.  At first it was cute that my peanut sounded like a little piggy when he was eating, or a linebacker when he was hanging out, but the cuteness wears off when you see him retracting and working really hard to breathe.  It never seemed worth an emergency room visit because it was never continual and his lips always stayed pink, until our little bit of shenanigans in the swing.  I could never find a pattern to his noisy breathing either.  Many times it was a bit louder when I would give him a bottle, but there were other times where he was perfectly normal when he ate.

At the pediatrician's office I fed him a bottle in front of her and also mentioned the fact that he got dusky and apneic in his swing.  In my head there was some monitor we could go home on and some out patient test we might have to do.  In my head, this wasn't a big deal.  I tend to try to turn big deals into little ones.  You know, because denial is an effective coping strategy.

Our very sweet pediatrician listened to everything I had to say and tried to softly deliver the blow that we need to head to the hospital to be admitted for observation and most likely to have Grayson scoped for possible laryngomalacia.  Say what now?  This is not on our agenda.  I have spent too much time in hospitals already.  Jon was all packed up and ready to go away for the weekend for work.  But as I am learning as a new parent, plans change.

So we headed over to the hospital for what we thought would be a 24 hour admission and scope.  I stuffed down all of my feelings of anger and anxiety.  I made a phone call and maybe dropped an inappropriate word or two.  Because, really, I was not planning on returning to a hospital for a long time.  I have had enough.  I am grateful we live somewhere with wonderful access to healthcare, but I am fed up with family members needing it.  I am burnt out on hospital systems and how long it takes to get everything done.  My emotional and physical reserves have been used up.

Because Grayson needed continuous monitoring, we had to be admitted to the PICU instead of a regular peds floor and because my sweet babe can't tell us what happened or if anything hurts, we had to be worked up for everything.

From our EEG to our scope, our little peanut was a trooper.  Again, I cannot voice enough how grateful I am that we were present for it all.  While it was heart breaking, and I am sure I held my breath through the entire thing, I held our sweet boy while they shoved the camera up his nose and all the way down by his vocal cords.  Of course, they offered for a nurse to hold him and for us to step out of the room, and of course I kindly informed them that it would not happen.  Much like watching my momma code, I'm a watcher.  I want to be there and do everything possible to make it the best possible situation for my little boy to endure.  So I will hold him and as soon as you are done I can turn him around and pull him close.  I will swaddle him tight when you are drawing blood, and I will overuse the stupid sucrose water that supposedly helps with infant pain, because if you can poke and prod him while he sucks away on his pacifier instead of being open and exposed and crying his sweet eyes out, I feel like I am doing my job as a momma.  I will watch out for my little one and protect him to the best of my ability.  I understand that everything is being done in his best interest, but don't mess with me or my babe.  I also understand that in this world, my babe will have to endure pain and hardship, and that it is a fine line and a tricky balance between protecting him and letting him live his life and have his experiences.  I realize that I most likely held him the entire first night we were there, not because he couldn't sleep, but because I couldn't.  Not because he wasn't OK, but because I wasn't.  It's a learning process.

It is amazing how quickly you can fall in love.  How quickly that baby in your belly can become your son that you would lay your life down for.  It is amazing how this little kiddo can mess you up.  The tears come more quickly now when I hear about a situation that involves a hurting child.  Jon and I were going for a walk and he told me about a ministry that serves homeless children in Chicago.  In about .3 seconds I was crying because I could not imagine the pain parents feel if they are unable to feed their children.  I see the world differently as a parent.  My heart is softer and breaks more easily.  The injustices that children face weigh significantly more on my soul.

After 2 nights in the PICU, and one on the regular peds floor we didn't come away with many answers.  Grayson had an EEG, EKG, Echo cardiogram  pneumogram, head ultrasound, blood work, urine cultures, multiple x-rays, and a scope.  All this to tell us he has some acid reflux, apnea, and stridor.  According to the pulmonologist, potentially none of these things are related.  While Grayson didn't have any true apnea episodes in the hospital because he didn't stop breathing for more than 20 seconds, he did on multiple occasions drop his oxygen level fairly low while he was sleeping.  Not really sure why this is happening in a term kiddo.  The scope that they did at the bedside was able to tell us that he does not have laryngomalacia, but to be able to diagnose him with tracheomalacia, he has to have a bronchoscopy.  Right now we are scheduled to have a barium swallow study next Friday to rule out some other anatomical things that could be causing the stridor and to determine if we can wait and watch, or if we need to move forward with the bronchoscopy.  We were also discharged home on an apnea monitor.  Loads of fun when it goes off the first night you are home because your kid is pulling his shallow breathing crap. Loudest.Alarm.Ever.

So overall, Grayson is OK.  We were able to go home and will be closely watched and monitored until we have more information.  Usually kids can outgrow tracheomalacia and reflux, and we hope this is the case.

Unfortunately, mommy and daddy are a little worse for the wear.  While we are so grateful that he is home, it is hard to let go of the 'what if.'  What if he has another dusky spell.  What if we didn't catch this one.  What if something is really wrong with our sweet babe.  It's a hard balance to live in, admitting and acknowledging the fear, but not letting it take control.

So we will cry a few more tears and hug him a bit tighter tonight.  We will again count our blessings and thank God for keeping our baby safe. I will probably drop some more inappropriate words the next time we have to go to the hospital.  Thank you to everyone who prayed for us and to everyone who offered to come up.  While we appreciated all the offers, there was no way either of us were giving up any snuggle time.  While I am sure we could have used a break, I don't think I was ready to step away.

While we don't yet have the answers we need, we have our sweet babe at home.  In the big picture, this was only four days.  Four days and we were able to rule out a lot of potentially big problems that could have caused Grayson to stop breathing.  Hopefully in the next couple weeks we will know more, but until then, we will love him right where he is at, all wired up at home and currently snuggled in the moby wrap on my chest.

All wired up for my EEG

 Big bed, little baby.
 Checkin out daddy.
 Rocking the head ultrasound.
 Thank goodness for the monkey
 Still smiling.  Loving sleeping on mommy or daddy  And maybe most of the night as well.
 Tex Mex Jesus looking over us.  You know you are sleep deprived and losing your marbles when you laugh about Tex Mex Jesus and other things that are so stupid I can't even remember them.
 The plan
 Thinking how awesome punk rock hair is after all the EEG goo was on Grayson's head.
 Didn't love the pneumogram.  That was an especially sleepless night.

Again, we are so thankful to be home and so appreciative of all your prayers.

Monday, November 5, 2012

Still here

We are still here.

Grayson was admitted to the PICU on Friday.

We are hoping to go home today.

Will update as soon as I can.

Thanks for your thoughts and prayers.

Monday, October 22, 2012

Grayson James

A birth story, kind of.

Last Saturday night, our washing machine broke.  Not only did it break but it blessed us with the opportunity to clean the basement floor after it dumped gallons upon gallons of water on it.   By Saturday night I had already had my membranes stripped... Twice... (if you don't know what that is you can google it.  My friend aptly called it getting kicked in the nuts for girls.).  So I made some terrible joke about wishing my water had broken, instead of the washing machines', and we acted like grown ups and went to Sears Outlet to purchase a new one.  It was a swell last "date night."

Please note this monumental moment in the Noto household.  For the first time in our craigslisting, money saving lives, our time and backs were more valuable than our cash.  We paid to have them drop off the new machine and haul away the old one.  Dang, it felt good.  We also sealed the impending birth of our child when the only available delivery date was Tuesday.  Because really, when you finally man up and pay for that delivery, who wouldn't want to scramble to find someone to be at your house and await your beautiful new washing machine since you are stuck in the hospital.  I know we did!  Side note, thank you to the many willing to help!

Please excuse the obnoxious amount of details to follow.  I don't want to forget a single moment, and apparently, "sleepless night" brain is comparable to "pregnancy" brain and I can feel the details slipping away.

Monday morning I went back to the doctor to have my membranes stripped, for the third time.  I had to be seen twice a week anyways, and I was trying to avoid my medically necessary induction on my due date.  After that fun experience  I went to spend the day with my mom.  My sister had been awake with my mom all night and my mom had been really sick and puking.  Honestly, it just sucked.  No obvious reason for what was going on, but it was the worst off I had seen her in a while.  As I was laying in bed next to her, I started to notice some contractions that were not as easy to ignore as they once were.  I tried to will them away, because I didn't want to be in labor yet.  I wanted my mom to be able to come to my delivery and that wasn't going to be an option.  As the minutes passed and the contractions increased to the point where I could no longer lay in bed, I started to mentally admit defeat and tried to find someone to come hang out with my mom so I could drive myself home.

Because heaven forbid I didn't go home.  A girl needs her stuff, and to only have one car at the hospital.  You know you are in labor when you get increasingly illogical.  So I spouted off some angry words to God and had someone come be with my mom, "just in case" this was the real thing.

By the time I got home I was on my tip toes during a contraction.  My ideal situation would be to labor at home, head into the hospital around 7-8 cm, and have a baby within a couple hours.  All this being said, I have never given birth and had the right to change my mind at any point.

I had started contracting around 3:00 p.m. and ended up having our sweet babe at 12:21 a.m.  While it's not the fastest labor I have ever heard of, it is pretty quick for a first time.  Confession.  Jon and I watched "The Fast and the Furious" on our honey moon.  We wanted to watch a movie one afternoon and it was one of the only ones in the house we rented.  Embarrassing, yes.  Maybe it helped our labor cause.  Our peanut seemed to be on a mission once they finally made the decision to come.  We will pay tribute to Vin Diesel in the days to come and maybe watch the most recent spectacular edition of the movie.


Now Jon had been rooting for this whole labor bit the entire previous week.  I didn't want to get his hopes up and then let him down if things pittered out.  So, you know, I waited until I had difficulty breathing through a contraction to tell him to come home.  If it wasn't legit at that point, I was not at all prepared for what was to come.  He asked if he should finish his session.  I said yes.

So from about 4:00-6:00 I labored at home.  I hung out in the shower and then took a good 30 minutes to apply some make up because I was contracting every minute and a half and only had about 15 seconds of breathe time in between.  I also requested to be called off of work.  Heaven forbid I call in sick too soon and make a fool out of myself when I am not actually in labor.

Around 6:00 pm my friend, Amy, said she would come over and support Jon and I.  While I had originally figured that I wanted to be at home for many more hours to come, by the time 6:00 came around, I had changed my mind.  I mentally decided I was only 3 cm and my butt needed an epidural to make it through this crap shoot, or I was moving really fast and my butt needed to get to the hospital.  One or the other. So I desperately awaited Amy's arrival, car packed and ready to go.

So, Amy arrived and I was 5-6 cm with a bulging bag and a really low baby.  Make my day.  Let's go to the hospital.  Oh, and my water broke.

Now I wasn't necessarily afraid to deliver in the car, but I had one little problem.  I couldn't sit still to save my soul, nor could I really sit.  Poor Jon, that had to be a rough car ride.  I'm pretty sure I was more of a silent, don't touch me or even look at me, labor kind of girl, but man that car ride brought out some special words.  Especially when there was a freight train.  I almost got out of the car and labored on the three lane road because my crazy self could not sit without thinking that my pelvis and legs would surely explode.

Can I just say I have a new found respect for my job and my patients.  I will no longer tell you to breathe.  Screw breathing.

By the time we made it to the hospital I was arguing with Jon about parking.  Yup. Because in labor you get really smart and you demand that your husband park the car and refuse to sit your butt in a wheel chair.  So our compromise was for Jon to drop me off at the door and go park the car.  There will be no emergency entrance valet or flasher lights, because this my friends, was not an emergency and I was still going to be "in control."  Sheesh I have some issues.

I bee-lined my butt to my unit, and surprisingly was able to power walk all the way there without making a fool of myself and acting all unruly in the hospital hallways.  The girls at work knew I was coming and were all ready to go.  I also texted my wonderful doctor to let him know he was not a total failure at membrane stripping and that I was almost sure we would have a baby tonight.

I was a good 6 cm when I got to the hospital and doctor was en route.  Unfortunately when he checked me, we were able to confirm, that like that morning, the baby was still facing up.  Little stink.  No wonder I felt a little bit like death.  I had always heard that labors with OP or face up babies were more difficult, and I am hoping it is true, even though I have nothing to compare it too.  Because it was beyond intense.  My put together, in control self, wanted to curl up in a ball and quit.  Only that's not an option, and you can't slow down contractions that are coming every minute and a half, when your body is doing it all on its own.  So instead I got in the shower and tried to melt the contractions away.  Jon stayed near by and continually offered to help. Unfortunately nothing felt better.  No pressure on my back, hot water on my belly, or special position made it any better.

So eventually I got out of the shower and gave my wonderful doctor a whopping seven seconds to check and see if I had made it any further before I again bounced out of the bed, because sitting and laying were surely not options at this point.  7 cm.  You've got to be kidding me.  I was not able to breathe, or relax due to how quickly the contractions were coming, and honestly I was about to go off the deep end.  With Jon's support and my friends, I decided to get an epidural to see if being able to relax would help the process to keep going.  While I really wanted to do natural labor, I also really wanted the baby to turn so that we could progress, and I didn't feel that I would be able to relax enough to do that.  At this point, an epidural was a good compromise for me.

After getting the epidural we were able to go from 7 to 10 cm in a matter of an hour or so.  While I could still feel some of the contractions, I was able to catch my breath and relax.  Baby's heart rate took a nice little dip  and Jon got to see my friends quickly transition from friend mode to work mode.  Jon and I were able to talk and relax.  I was able to process a little bit more how sad I was that my mom wasn't there, but that I was so grateful she is still alive and will be able to meet my kiddo to be.  My legs never really got numb and the pain never fully went away, but it was beyond tolerable now.

Until I started pushing.  Then, no longer tolerable.

For two hours I pushed, because our sweet child did not correctly know his up from his down.  For two hours I turned inside and mustered every ounce of strength I didn't know I had. And, for two hours, I'm pretty sure I didn't open my eyes.  Because it is hard to open your eyes when you are having a mental battle with yourself.  Labor and delivery nurse Jaci knew it was beneficial to have someone try to turn the baby into the correct position because then all the pain could stop and we could meet our sweet babe.  Normal human Jaci wanted to scream at her friends and physician to get their hands out of places that they don't belong because it feels like I will surely rip in half.  While I know I have an epidural running, I can feel everything and this is really just not the best feeling in the world.   I'm not really sure what I ever said out loud, but that was definitely what I was thinking.  With every contraction I would want to panic that one was starting, but at the same time dig in to end this crap.  What a conundrum.  I am so, so thankful for the support and love of Jon and my friends through those moments.  Thank you for telling me I could do it when I surely wanted to quit.  Thank you for not pulling the kid out with a vacuum, because I am pretty sure I asked for that too.  Thank you for staying with me, even after your shifts had ended and for decorating our rooms.

Eventually the doctor was able to get our sweet babe to turn and we were able to meet him.  Jon confirmed what we thought was the case all along.  We had a son.  It was a boy.  Surrounded by so many people that care about us at work, we brought Grayson James into the world at 12:21 a.m, weighing 7 lbs and measuring 20 inches long.  He was 7 lbs and 20 inches of perfection.  Cone headed perfection, but perfection none the less.

I am pretty sure I was in shock.  At the time I did not cry at all, but instead scooped up his messy little body and checked him all out.  I fell in love with his itty bitty features and is head full of dark hair. I fell in love with my baby that already had eyebrows and eyelashes. I fell in love with the sweet little babe that I had carried around for 10 months, yet could never have imagined how truly captivated I could be by this little person we had created.  It took us a little while to pick a name, but I love it and it suits him.

Jon was wonderful.  Jumped right in and held a leg as I worked my butt off to bring our son into the world.  And it was awesome to see him gaze into his sons eyes and fall in love for the first time as well.  I don't know how one is supposed to sleep when you meet your new baby for the first time.  I could have stared at him all night.  In the next couple hours he got his bath and met his Nana and Aunt Aly.  I texted and talked with my mom as she sobbed her face off over her new grandson.  While I desperately wanted her to be there, I am trusting that it played out for the best.  It would have been so hard for her to be up that long and to want to be able to physically support me, but to not be able to.  So instead she was able to come up the next morning and spend a couple really awesome hours with us.

It was wonderful to be able to introduce our sweet babe to our friends and family that stopped by the hospital.  It was even more wonderful to bring him home.  In the next day I'll write about some of our adventures and also some of the precious moments my mom has been able to have with sweet Grayson.

Thank you for all of your love and support.  I'm sorry about any and all TMI.  Huge thank you to all my friends and coworkers at work.  Everyone went above and beyond.  Thank you to my doctor who knew and understood that this was so much more than just another delivery.  Thank you for letting us share our story, and thank you for being a part of it.

The labor stance.  Thanks for supporting me Amy and finding those heart tones while I danced around like it was a disco party.
 My Rock.
 Noto Baby Love
 Excited to start pushing and able to smirk in between contractions.  Let's meet this peanut.
 My labor face from then on out.
 Lovely room decorations.
 It's a pleasure to meet you my smooshy friend.

 Rounded up to 7 lbs even.
 You're ticked, we get it :)
 Daddy can't get enough of you.
 Neither can I.

 We look exhausted.  We were.
 Now a family of three.
 Grandma snuggles.  I love that you can see my mom's scar on her chest.  She has made it through so much for this moment and I will be forever thankful.
 Someone was quite content in grandma's arms.
 Little love.
 Snuggled up.
 And finally, my favorite picture of Grayson so far.  We took some pictures at home on our camera and I just cannot stop staring at this one.  Love this guy.

Sunday, October 14, 2012

6 Nights

It took six nights.

What I would have written off as an impossibility took six nights to complete.

In six nights we were blessed with $6000 to help take care of my mom.  I wish I could express with the 26 letters of the alphabet what this means to us, but I really feel like my words will not do it justice.

My words cannot describe the tears that streamed down my mom's skinny face as that last donation came in and my cousin messaged me that we met our goal.  My words cannot really describe the burning in my chest as I tried to hold back my own tears because I have been sick with a stuffy nose and I just didn't really want to go down that ugly cry road.

So instead, I waited.  I waited until I was in the shower, because that is my favorite place to cry, both happy and sad tears.  I love that the spray of the shower and the steam make it impossible to differentiate between your own snot and tears, and the clean water streaming down you face.  I love that I can be alone if I want, but that if Jon is home, he knows this is where I go to melt down, and he will come check on me. There is safety for me in that small space.  I meet God in the shower.

This weekend I was able to cry thankful tears.  We are so thankful.  For the money, for the outpouring of love, for the time, for the words.  We truly cannot say it enough, nor can we believe that it only took six nights.

There is a huge part of me that wishes we didn't need it.  I wish this wasn't our heart break and our road.  I wish my mom could be here to celebrate not just the birth of my child, but the birthdays to come.  I wish she could be here for the many more monumental moments of my sister's lives.

But all these wishes won't necessarily change anything.  While I believe in miracles and the power of prayer, I also trust, that if this is the road that we are meant to walk, that there is a reason.  I trust that there is a reason for our story to be written this way.  I trust that the same God that was with me when my life appeared so stable in the beginning of June, is with me now.

And I continue to learn that we will be OK.

"Thank you" is a drastic understatement.  But regardless, thank you for being a part of our story.  It may not be all rainbows and unicorns, but it is deep and rich and filled with immense joy and hope that is constantly created by those walking alongside us.  Thank you for allowing my mom to have peace in these upcoming weeks about all things financial, so that we can focus on living.  It is a gift beyond our wildest dreams.

While the pumpkin farm was wonderful, we do the majority of our living in the sacred place of my mom's bedroom.  Next to the meds and the puke bucket, is where we take in every ounce of life my mom has left.

My moms ability to connect with people, especially kids, never ceases to amaze me.  Gav knows the instant he walked in the hospital room that it was ok to climb right in bed with her.  No anxiety about the wires or the tubes.  To him it was just his nanny, and he continues to run right to her bed the instant he walks in the door.  

So we will keep snuggling and cuddling, and doing as much living as possible.  Thank you for this gift.

Thursday, October 11, 2012


Sometimes it is just so hard to wait.

Since yesterday morning I have been contracting enough to feel like crap and not sleep, but not enough that I would think I was in labor and actually go to the hospital.  Poor Jon.  The guy has been rooting for 10/11/12 since we found out the due date.  I don't think it is going to happen, babe.  So we will keep waiting.

I am constantly in a state of waiting with my mom.  Waiting for the day that things take a turn for the worse, waiting for the next really awesome field trip or really good day, waiting for the next hug or conversation I sob through.  We really have no idea what is coming or what it will look like.

Today I am waiting to go get my pregnancy massage at 1130 thanks to a wonderful friend at work.  I want to storm down the doors and tell them to take me now,  I realize it is 5:30 in the morning and normal people are asleep, but this girl is really looking forward to that massage and cannot wait.

It has been hard, and wonderful, and miraculous to wait and watch my mom's fundraiser page.  Thank you truly feels in genuine at this point because of how often I have said it.  What a powerful example of the possibilities out there if you open your heart and create a world of community.  So many aspects of my gut told me to not move forward with it.  The lies and beliefs that we have for many years are hard to break down.  I was scared of people judging us, of being considered weak, of people judging my mom for not being more prepared.  And honestly I was scared that I wouldn't be able to take the blow if we put ourselves out there and then no one stood up next to us.

So much of my life has been lived in the fear of that question.  Who will stand up next to me?  What I'm learning is that there are plenty of people who will, but you might have to go out on a limb and ask. You might have to be vulnerable and ugly.  You might have to come together on the level of heartbreak and humanity, but heartbreak and humanity are strong rocks to stand on together.

So thank you for standing and waiting with us.  May our story change lives for the better as it is constantly doing to mine.

While the waiting is hard, I am excited to bring my babe to be into this new world of ours.  I'm excited to share my deeper appreciation of all the little things.  I can't wait to tell my kiddo how this gift was from your grandma, cousin, aunt, uncle, and you are so dearly loved already.  I can't wait to hold an innocent life in my arms that knows nothing of shame or doubt.  All he or she will know is trust.  Trust that there is enough and trust that all will be ok.  I want to continue to make strides to live like my baby.

Once again, thank you.  Thank you for loving us in all different ways.  Thank you for walking with us. And thank you for waiting with us.  Thank you for helping to shift my view on the world and for better preparing me to be the mother I would want to be.

Monday, October 8, 2012

Blown Away

Over the past four months I continue to underestimate.  I underestimated my mom's life expectancy as she was coding in the ICU. I recently underestimated how much hospice could really make a difference in our lives.  It has been a world of difference since they have been involved.  I underestimated my body's ability to carry this baby potentially to its due date even with all the stress it has been under.

Last night I underestimated the power and strength of community in our lives once again.

I am a "type A," freakishly independent, perfectionist.  Asking for help is hard.  It makes me feel like I have failed.  Putting my needs out there to be met by others scares the bejebus out of me. It feels much safer to rely solely on myself and my own abilities to provide and take care of situations.  Gives this control freak a fake sense of control.

Slowly through this process I am learning that my sense of control is horse crap and that I need people.  My husband and I need the love and support of those that surround us to truly live this life to the fullest.  My mom needs the love and support and prayers of those that she has touched in her life. 

As a human on this earth, we need each other.  

It sounds so cliche and simple, yet it is a concept that was so hard for me to swallow.

Well last night I set up a fundraiser for my mom online.  The link is on the top of my page.  While I would love to put on a big event like Goat Fest and celebrate the life my mom has lived while raising funds, a child will be birthed from my body in the next few weeks, and honestly, I want to be able to spend all my free minutes with my mom and not event planning.  So a boring website it will be.  

In the past few months we have had so many people ask how they can support us, and I never really knew what to say.  Little by little we have figured it out.  Honestly, we could really use some financial help, which is why we created the fundraiser.  

We will continue to constantly need prayer.  I have no clue how long my mom will live.  Hospice says that right now they would guess three months.  My mom says she wants to live until march first. Why? I have no clue.  Maybe to just prove someone wrong,  regardless, I would take it, if the end of her life can look like the last couple days we have had.  If she starts to quickly decline, I honestly hope it is fast.  Suffering is not on my "horse crap sense of control" agenda.

In the future, we will continue to need help with people to spend time and check in with my mom.  She has been doing so well these past couple days, that she hasn't needed someone there constantly.  It has been great.  At the same time it is hard for me to not want to spend every extra minute there and soak in every last moment, memory, thought, touch, and conversation with my mom.  I am like a garbage disposal.  Throw it all in, I will take everything I can get. Because the world keeps spinning even when you feel like your life has come to a screeching halt, I am trying to find the balance between working and spending time with Jon and friends, while still taking in all that precious time with my mom.  Oh, and I will need to have this baby at some point.  Eventually it will set in.  Maybe when I'm pushing.

So if you are reading and have asked how you can help, these are our biggest needs.  Time, prayers, and money.  We set up this fundraiser with no expectations, just trusting that God will provide just enough.  Trusting that our story can be one of hope and love.

In one night I have been blown away.  I think I constantly lower my expectations hoping to not get disappointed.  I am learning that my "prepare for the worse and sort of hope for the best" attitude doesn't really serve me anymore.  I want to start living my life trusting that there is enough.  Enough hope, peace, security, time, love, and joy.  Our needs will be met.  We will be ok.  This does not mean that life will not be hard or that we will not struggle, but there will be enough, and we will be ok.  Thank you for helping me come to this realization.  Thank you for your love and support.  My family needs you, and I look forward to the day when we are on the opposite end of this table and I can help someone else come to these realizations.  

Sunday, October 7, 2012

The Pumpkin Farm

Not too many words needed to describe this weekend.

I think hospice was the best decision we have made.  We have had a couple really awesome days and I am beyond treasuring this precious time with my mom.  Removing some of the really rough cardiac meds and focusing on quality instead of quantity has been such a relief.

Even though it was freezing, we made our way to the pumpkin farm.  We were quite the site.  My sister's husband was in a car accident about a month ago and is currently in a wheel chair as well.  So gravel walkways and two wheelchairs are not always the best match.  Luckily no one was tossed out of their chair on the bumpy roads.

Please pardon the crazy amount of photos.  My mom must be dying because prior to this even she has always been anti-photo.  Not her thing.  Thankfully, she has gotten over it :)

 Yes child to be, mind you mummy.
 Nothing says fall like apple cider donuts.
 Gorgeous sky, freezing air.  Good thing we had hot apple cider to warm us up.
 Pumpkin farm family portrait.
 Love this lady.
 Paved roads are easier than gravel.
 Pumpkins with butts.  Or something else according to Jon.  We are very mature and ready for a child.

 Who loves corn on the cob doused in butter?  These girls.

 Aly is excited to be out with the momma.
The one and only free photo-op.  You couldn't even walk by the park and the pumpkin patch without separate admission fees.  Silliness.
 Boys on the love bench.


 Oh, forgive me.  The only other free photo-op.

 Refusing to buy maternity sweatshirts at this point.  Hence my glamorous fashion statement.
 What a babe.
 My favorite this season.  White pumpkins.
Couldn't have been a better day.  So grateful for the small moments, for the hot apple cider, corn on the cob, the jokes, the laughs, the donuts, and one more good day with my mom.  Hoping for many more.