I have a 6 month old and that is just CRAZY!!

It's hard for me to think that it has been six months since that unforgettable day when I was told at 29.5 weeks pregnant it was time to load up into a helicopter and be flown to Sacramento for "monitoring" only to be rushed in for an emergent c-section to save my life.

 (It was only by God's sustaining grace that I was not more freaked and calm enough to think, 'hey, will you take my picture?')

It's hard for me to believe that it has been six months since I first laid eyes on the most beautiful "monkey alien man" because let's be honest, premature babies just don't have that traditional adorable newborn look to them.  But despite the non-traditional look he sported, he had my heart from the beginning!

 

It's hard for me to believe that it has been six months since we were plopped into a whole new terrifying world called The NICU.  

It's hard for me to believe that my handsome little man is already six months old.  

I guess it's just hard for me to believe that I am the mother of an amazing little guy who has already traveled 1/2 way around the sun.  I love that Riley is starting to develop his personality, his likes, and dislikes.

He LOVES to hear daddy sing...especially if daddy is singing songs about how he needs to find employment. 

He has been sleeping through the night on a consistent basis for several weeks now.  This makes for not just a happy baby, but happy household.

He loves to nap on his tummy in the living room during the day (don't worry, he's always supervised).  If you try to put him in his crib on his back while the sun is up, it will last only about 20 minutes before he is making it clear that he wants to be out where the action is.

He LOOOOVES playing in his play gym.  This kid's face lights up every time he gets to see the lights, hear the music, and chew on his toys.  The songs are now the background music in our dreams, but he loves it so much we continue to tolerate it :o)

 

He goes from Fussy McCrankypants to Happy McGiggles in 2.4 seconds the moment you lay him on his changing table.  He LOVES to be on his changing table, even if he's not being changed.  He's such a wonderful little weirdo.

We've recently introduced Riley to some solid foods.  He's been getting rice cereal for a few weeks at night, which has been mommy's saving grace going back to work and not needing to be up in the middle of the night and up at 4am to start the day getting ready for work.  He tried avocado last week and did NOT know what to make of that and this morning we tried some organic pears.  An ounce and half it was enough to tire him out and asleep he fell in his favorite place....mommy's arms (it's mommy's favorite place too!).

 

Riley LOVES Eskimo kisses.  The little black thing (my phone) that mommy always seems to be holding is often distracting and this time was no exception.  Usually Eskimo kisses from daddy gets a much more enthusiastic response, but still adorable none the less.

 

Happy Half Birthday to my favorite little guy who loves to giggle, sleep through the night, hear daddy sing, and get Eskimo kisses.  He is such an incredible blessing to our lives and can't believe the amazing growth and progress he's made in the last 6 months.  

August 8, 2013

 

1 Month Old

2 Months Old

 

 3 Months Old

4 Months Old

5 Months Old

6 Months Old

Life in My Post NICU World

I have tried to start this blog about three times.  I feel like I have so much to get out of my head, and being in rare form, I don't know exactly how to do that this time.

The last 6 months has been one of the most trying and difficult seasons of my life.  That being said I am of the firm belief that it is good to share our trials.  For one, I find it beneficial to write to get things out of my head, because I'll be honest, sometimes being inside my head is a very messy place to be.  Putting things in writing is my way of tidying up and some days it's my way of getting on my hands and knees and scrubbing.  My experience has also taught me that when I am willing to be vulnerable and share beyond the surface, "how are you? fine" exchanges, I have learned I am often not alone in what I'm experiencing.  No one is exempt from difficulties and trials in life, it's a product of living in a fallen world, but when we are willing to take the risk and share those struggles with one another we often find healing there. 

So in the spirit of all that, a lot of the time I'm a mess. 

Having a baby 2 1/2 months early is terrifying.  The problem is, when we left the NICU, the terror of having a preemie didn't stay in the NICU.  It apparently was the package deal no one tells you about.  You get both the baby and the overwhelming fear that something horrible is going to happen to him.  I have literally been fearful for him in some way or another since the moment the doctor held him up for me to see him for the first time.  Now that I am home and he is doing well, the fear is not so much in the form of "what will the doctors tell me today," it now twirls its dance in the form of anxiety.  A lot of what I fear has to do with losing control of that which might affect him and some of those things are just STRAIGHT UP irrational. 

I've done anxiety before; I am no stranger to the panic that sets in without a trigger; the feeling of needing to flee but not knowing where I need to go to feel safe.  It's not pleasant.  I'm pretty sure that's why there is a multi-billion dollar pharmaceutical industry devoted to eradicating it at the brain chemistry level.  I do anxiety well and even though my son's birth has been one of the most joyous events in my life, it has come with panic and anxiety attack shaped baggage.

Shortly before Halloween Danny and I attended a funeral for the baby girl of some friends we met in the NICU.  I wasn't sure how I was going to handle the event.  Surprisingly, I did quite well, FAR better than I would have thought.  It was actually the decision that followed that brought on my first post-NICU anxiety attack.  Where should we go for lunch?  Shortly after posing the question I suggested we go to Chick-Fil-A.  It's one of our favorite places.  I wasn't 2.3 seconds beyond the suggestion that my heart began to race and I burst into tears.  It actually kinda scared me that my reaction was so quick and seemingly out of the blue but it didn't take me long to figure out why. We had Chick-Fil-A at least once a week while we were in Sacramento with Riley in the NICU.  The idea of returning to Chick-Fil-A made me feel like I would have to walk the hallways of Sutter Memorial to sit crib side of my son hooked up to a monitor wondering if we'd ever get him home.  We ate at Chick-Fil-A that day, I felt I needed to do it to show myself that Chick-Fil-A did not mean NICU.  It was hard.  It came with a side of nausea and an "I don't really wanna do that again soon" after dinner mint.

The day before Thanksgiving I drove to San Francisco to visit a friend whose 4 year old daughter had been admitted to UCSF with leukemia.  After my Chick-Fil-A incident I knew I would have to mentally prepared myself for the fact that I was heading to a Children's Hospital.  I wanted to be there for my friend, she had been (and continues to be) a HUGE person of support during our time in the NICU.  I did not want to find myself in the middle of another chicken sandwich franchise sized meltdown because I might hear monitors beeping, or see a collection of IV poles and be transported back to that time once again.  My guard was up and I was going to be strong--that was until I used the restroom and washed my hands with soap that smelled IDENTICAL to the soap in the NICU.  I had to scrub in with it multiple times a day before I was allowed to hold or even touch my baby.  Bring on the racing heart and wave of panic.

Then we entered into the Christmas season.  Danny and I went out to do some Christmas shopping one afternoon and on our list was an ornament for 2013.  We were continuing the tradition my parents had started the year my brother was born--an ornament that commemorated an event from the past year.  We tossed around a pregnant lady ornament, or a helicopter ornament for me, but struggled to find anything suitable.  Then we stumbled upon a very fitting one--a trailer decorated with Christmas lights.  It would commemorate our "summer in the trailer" as we lived downstairs from our son in the hospital parking lot.  I no sooner picked up the tree trinket, that the excitement of finding something so tailored to a monumental event in our year, dwindled.  Reminiscing of those days brought me again to that place and I was quickly whisked back to the anxiety riddled state I had found myself in before.

SERIOUSLY!? Chick-Fil-A, hand soap, and an ornament? All of them responsible for some pretty intense post-NICU anxiety.  

As the time has drawn nearer for me to return to work, I return on Monday, the anxiety has only increased with the idea of being required to leave my son for so long during the day.  Now, I have spent more than 8.5 hours apart from him--2.5 days in fact, but those were my choices not a requirement.  Having the choice taken from me makes the task more difficult.  It just does--it's a control thing.

I have a few friends who had their babies during the same season as Riley and a few of these women have begun returning to work.  The difficulty of leaving their precious ones has been clear as they share about their day on Facebook.  Despite the obvious anxiety attacks brought on by NICU related events, the constant ever-growing anxiety that has been brought on by anticipating returning to work has got to be significantly worse. I don't want to do it but I know that I have to and there is nothing I can do to change it.  I am terrified to not be there for something important, to miss a milestone, or even worse to not be there, have something horrible happen, and wonder if my presence would have prevented it.  Part of it is losing the neurotic control that I've maintained over his fragile life since we've been home, and part of it is that I am convinced women are not designed to be away from their babies.  It's simply not natural. Throw in some additional post-partum hormones and, like I said earlier, a lot of the time I'm a mess.  In fact, earlier this week I burst into tears while talking to Danny when I realized how difficult it must be for him to live with me during this time.  He got me some Kleenex, put his arms around me, reminded me I would not feel like this forever, and told me that he loved me...repeatedly.  I may be a mess, but I must admit I am an incredibly blessed mess.

I'm going back to work on Monday.  I don't want to.  Facing that reality has me fearful of so many things which brings about more anxiety, fueling the desire to not be away from him all the more.  It's a vicious cycle really.  But a friend of mine, one who has recently returned to work after her maternity leave, encouraged me with this truth: we weren't designed for it but remember, God knew you would have to, and He made provisions for Riley.  

Beyond that, He is making provisions for me as well.  I'm trying to be ok with it. I really am working on it.  In fact, I am meeting with a licensed professional who is helping me work on it.  At the core of all of this angst and fear I am doing my best to cling to the truth in Paul's letter to Timothy:

 "For God has not given us the spirit of fear, 

but of power and of love and of a sound mind." 

~2 Timothy 1:7

So I guess I share all of this because my life has very much been an open book, especially in regards to our journey home with Riley.  For me it's hard to close that book just because the next chapter is slightly more vulnerable.  When so much of what we see and share through social media paints our lives to be perfect we have developed a seriously skewed view of reality and I guess this is my way of trying to be real.  Don't misunderstand me, I am so overwhelmingly blessed to be Riley's mom--few things in life have brought me such immense joy...and I've only been playing this gig for 5 months!  But as messy as it is, this is part of the preemie process and my hope is that someone else will be encouraged knowing that when the trials that they are facing get the best of them, they're not the only ones. 

My life is by no means perfect, so when you feel like you're not cutting it because you're struggling and everyone else is leading a life filled with rainbow crapping unicorns (sorry mom....I blogged "crapping"), you're wrong. Thinking everyone else has a perfect life based on their posts to social sites, it is as silly as thinking they have lawns covered with the rainbow turds of majestic mythical creatures.  I guess this is just my proactive way of trying to help debunk the myth.

So here it is, I am often a mess, but at the heart of it I am trying to cling to the truth that anxiety and fear is not from the Lord and as my wonderfully supportive husband has reminded me, I will not feel like this forever. So there it is.  Be encouraged!  My yard may have a few turds in it, but I assure you there is nothing rainbow about them.

Riley's (3 Month) Newborn Photo Shoot

Back in September, some wonderful friends of ours from church threw my husband a Daddy Shower.  It was at this wonderful surprise event that we met the Spooners--Amy, Ben, and their little boy Zane.  They had just moved to Paradise from Indiana a few weeks prior and had gotten connected with our small group at church.  

A few weeks after we got home and got settled, Amy asked me if she could do a newborn photo shoot for Riley. Oh did I forget to mention that she is an AMAZING photographer?! Now what would be a newborn photo shoot for most babies, for Riley, was actually a 3 month photo shoot. 

At that point, she had hung out with us once and here she was offering to bless us immensely with what would turn out to be a phenomenal photo shoot.  You can imagine how much arm twisting she had to do :o)

It was SUCH a fun morning.  She came over and set up a whole studio in our living room. With all of her props and equipment it really looked like she was moving in. She had so many cute ideas and thankfully Riley was incredibly cooperative.

Now that Riley is 5 months, I'm finally getting the opportunity to share the pictures from his 3 month shoot.  Life gets crazy at the holidays with an infant at home...whatcha gunna do? 

So sit back, scroll, and enjoy what came of our wonderful time with Amy:

 

Amazing how much he has grown since these shots were taken.  He looks so small.

 This one is one of my FAVORITES! The Tonka truck was Dan's when he was a kid.

 LITTLE TOOSHIE!! :o)

 Yup. Pretty sure THIS one is my favorite of all of them!

 Riley's grammie and grandpa Knopf got him the wooden truck.

 I love Dan in this one

 My little yawner :o)

 My three favorite boys

Fezzik is so sweet with Riley

You can check out more of her work on her website here.  Not only is she a great photographer, she is super nice, WAAAY fun, and I would absolutely recommend her for any professional photography needs.  

Thank you so much Amy for such wonderful pictures of our precious little guy!

Wall of Remembance

After 40 years of wandering in the desert the Lord brought the Israelites into the Promised Land.  The Lord stopped the flow of the Jordan River that His children might walk across dry ground into the Land He would give them.  Once they reached the other side He instructed Joshua to a have a man from each tribe take a stone from the midst of the Jordan and place it where they would camp.

"When your children ask their fathers in times to come, 'What do these 

stones mean?'then you shall let your children know, 'Israel passed over 

this Jordan on dry ground.' For the LORD your God dried up the waters 

of the Jordan for you until you passed over, as the LORD your God 

did to the Red Sea, which he dried up for us until we passed over,

 so that all the peoples of the earth may know that the hand of the 

LORD is mighty, that you may fear the LORD your God forever."  

-Joshua 4: 21b-24  ESV

I know I've written quite a bit about our time in the NICU and this will be just one more to add to that collection.  While our 58 days in the NICU was not anywhere near 40 years wandering in the desert (thank heavens!), the Lord definitely led us through it.  Now that we have reached the other side, I really felt we needed our own Stones of Remembrance.  It truly was no small thing what God brought us through.

Many of you may know that we had a professional photo shoot while we were in the NICU.  The Tiny Footprints Project is a group of photographers in the United States and Canada that provide their professional services to NICU families free of charge.  It took just a private message on Facebook to be connected with a Tiny Footprints Project photographer out of Redding, CA named Lorraine Paoli, (If you click her name it will take you to her blog where she tells her story of being a NICU mom herself and her desire to be part of this amazing group of photographers. She even used our photos as part of her compilation).  She was once a NICU mom like me...and we were going to be her first clients, not as a photographer, but her first TFP clients.  I think she would argue she was more excited than we were.  She came all the way to Sacramento, about a 3 1/2 hour drive, in her Excursion no less, to photograph our precious boy and two other NICU families.  She was fabulous!

I wanted to make sure that the moments captured that day were not something that sat forever digitized on my computer and forgotten.  Life in the NICU was not something we will ever forget.  Life in the NICU is how Riley survived the first 8 weeks of life.  Even though some of the memories are hard and painful, they should be remembered.  The Lord's faithfulness is something we will always credit when reflecting on the time we spent at Sutter Memorial.  Now, thanks to Lorraine and The Tiny Footprints Project, we now have our own "Stones of Remembrance."  

 Of the 59 pictures Lorraine gave us that day, these are just 20 of my most favorite.

Riley means Courageous.  When I thought how I would display these precious moments, I knew immediately I wanted the photos to be centered around this promise.

By FAR one of my most favorite pictures of our son that day. 

 A long time friend had this blanket made for Riley.  His name and birth date embroidered across the bottom was such a special personalized gift for our precious miracle.

"You created my inmost being; You knit me together in my mother's womb. I praise You for I am fearfully and wonderfully made. Psalm 139:13."  

My sister Kim made this for Riley's isolette.  We made sure it was displayed proudly on each of the cribs he was in during his time in the NICU.  I hope it caught the eye of parents, nurses, doctors, and visitors and served as a reminder to all who saw it that these babies were created with thought and purpose.

Another one of my favs.  He is just staring up at Danny.  I love that she caught this moment.

So much of our time near the end of our stay revolved around feedings.  The reason we stayed as long as we did was so Riley could get the whole eating thing down without his heart rate dropping (which was a BIG deal!).  By the end, we were there for 6 of the 8 feeds each day to ensure consistency and that his specific needs were being met each time.  I love this "post meal" pic--father and son...melt my heart!  I also didn't want to over look the elements that made up the NICU.  I included pictures like the one to the right of his crib.  There's also one of his monitor proudly displayed on the wall.

 

 I remember posing for this picture.  I was given the most awkward instructions as I tried to do just what Lorraine was instructing.  I thought for sure I had to have looked as uncomfortable as I felt, but as it turns out, this is in the top 10 BEST pictures I've ever taken and I love that it is with my little man.  I will treasure this one forever!!

I love that a generously gifted photo session, some yard sale picture frames, a couple coats of paint, and a few strategically placed nails, has perfectly completed our Riley's nursery.

What if the NICU was God's Mercies in Disguise?

It's amazing to think that today was the day Riley was due.  It's hard at this point in the journey to comprehend not knowing my son as intimately as I do.  I can pick his cry out of a room full of other crying babies (and often did), I have the shape of his bald spot memorized, I knew his brady and apnea cues better than the nurses, I know the best way to get him to burp, and don't even get me started on the adorable "milk drunk" faces he makes when he's full and bubble-free, I still laugh just as hard as the day before.  After all we've been through the last 10 1/2 weeks, to think that I would most likely still be pregnant at this exact moment if I hadn't developed pre-eclampsia and HELLP syndrome, is actually quite difficult to do.  

I could easily make this all about how I would trade it all to still be pregnant, to daydream what it would be like to be as big as a house--I only got to be the size of a condo, to fantasize how wonderful it would be to be horribly uncomfortable, to have out-swollen my "fat shoes," to single handedly be driving the economy's demand for TUMS, and to rest in immeasurable peace knowing that my son would not be born with the conditions and issues he's had to overcome because he was born prematurely.  The truth of the matter is that for the last two months I have often wished that was my reality.  I admit it.  But at some point I simply had to come to a place where I accepted that the fact that he came when he did.

Today I have found myself rejoicing that I have a two month old who still swims in his newborn clothes.  I learned just last week of a young woman from Oroville who had preeclampsia and HELLP syndrome, neither she nor the baby survived.  So I will take the last 10 1/2 weeks, the most challenging, heart-breakingly painful, horrifically terrifying experiences of my life for what they are--God's Mercies.  Yup, that's right.  58 days in the NICU can be beautifully summed in two beautiful words, God's mercy.

It was the lyrics to a song that came on the radio two weeks before we came home from Sacramento that allowed my heart to continue on the journey that was NICU life.  I had my days of complete and utter meltdowns and they became more frequent the longer we were there. I reached a point when I didn't think I could stay one more night in a trailer in a hospital parking lot and simply WANTED. TO. GO. HOME.....but how could I leave my son?  I couldn't and like any mother, I wouldn't. The Lord gently met me EACH AND EVERY time I reached that point.  He knew my exhaustion.  He knew I couldn't carry on, so He carried me.  He knew I was given more than I could handle, so He sustained me.  Most have NO idea what a NICU experience is like and I am SO thankful for that.  But I knew the reality far too well and I was sick of it.  I was angry over it.  I was grieving the lost last 1/3 of my pregnancy over it.  

It was the song Blessings by Laura Story that brought me through the tail end of our time at Sutter Memorial.  The final line in the chorus says, 

 "What if trials of this life are Your mercies in disguise?"  

It was then that I was done being "done" with my time there.  

What if the most challenging, heart-breakingly painful, horrifically terrifying experience of my life was God being merciful?

The alternative would have left me not grieving the lost weeks of my pregnancy, but the loss of my son, or my husband the loss of his wife and child.  I had seen couples grieve the loss or what would eventually be the imminent loss of their children.  NICU life is horrible.  But what if the fact that we were in the NICU was God having mercy on us?  It was that reality that sustained my exhausted spirit.

So today I have taken kind of mental walk down 'NICU Memory Lane' and have been praising Him for having mercy on me, on Danny, and on Riley.  They say a picture is worth a thousand words, so here's the next 12,000 words (plus a couple more) expressing God's mercies better than words ever could.

 

 Day 1: The first time we saw our son he didn't look like a baby...I called him my Little Alien Monkey Man (affectionately of course!)

 Day 3: Our tiny little boy had jaundice and spent 6 days under bilirubin lights to correct the problem.  He LOVED it.  He often positioned himself like a lizard warming on a rock in the desert.  I just can't get over how small he was when I looked at his body compared to my hand.

Day 6: I waited 5 days 22 hours and 19 minutes to reach this moment.  Two days after I was discharged from the hospital Riley was FINALLY in my arms where he belonged.  No mother should have to wait 6 minutes, let alone 6 days.  But again, having 6 days to wait for my child to be stabilized was again God's mercy.  I tell you what, it was like 3 Christmas's rolled into one spent at Disneyland with no lines....ONLY BETTER! 

 Day 14: Riley was off the bubble CPAP and on a high humidity nasal cannula in hopes that he would tolerate it better, it was not as effective, but some babies it's what works for them.  It was SO much easier to snuggle with him with just the nasal cannula.  I was thankful this method worked as well as it did for him.

 Day 17:  I still laugh every time I see this picture.

 Day 25: His first day wearing clothes.  The onesie my mom got for him saying "NICU Nurses are my heroes" was sized for a micro-preemie and it was HUGE on him, but we rejoiced because clothes meant he could regulate his own body temperature....one step closer to coming home checked off the list.

 Day 38: I celebrated my 31st birthday with my son in my arms.  He was finally looking more and more like a smaller version of a baby when he finally was growing into his cheeks and out of his monkey alientlook.  What a precious gift to celebrate with!

 Day 42: MILK DRUNK FACES are still some of my favorite things about this little man.

 Day 48: Lying in his open crib sleeping so peacefully I couldn't help but notice the chin roll he was sporting.  He was simple angelic (this is my mom's favorite NICU picture of him).

 Day 58: We were FINALLY GOING HOME!  This was equally celebratory as the day I first got to hold him.  We were headed home.  What a TERRIFYING 93 miles that was!  I just wanted him off the double lane highway and safely in our home where he belonged.

 Day 64: Soaking up every moment of this little guy falling asleep on my chest.  He has GOT to be the most amazing baby I've ever laid my eyes on.  I'm horribly biased, but COME ON!  Look at that precious face!

Day 73: Today--Riley's due date.  If our home scale is correct he is now 8 lbs 3.2 oz.  Would he have been an 8 lbs 3.2 oz baby if he were born today instead of 73 days ago?  I don't know.  I didn't have a baby I carried to term. What I do have is a growing boy who is thriving and growing and reminds me daily his little life echo God's mercies in disguise.

What if the trials of this life are Your mercies in disguise?