Pin-plex

The last few months have been SO crazy.  Between our appointments with therapists, specialist, and the pediatrician, not to mention the other hours we spend on our own doing therapy and work on feeding techniques, I assure you this blog isn't the only thing that has been neglected.  I knew having a newborn would be busy as priorities shifted and supporting another life took its tole but this? This is insane.  And I've loved EVERY minuet of it. :) The other day though, while desperately searching for something to make for dinner out of the existing contents of the kitchen (who has time for grocery shopping anyway? Or money for that matter? ;)) I was ambushed by an unexpected enemy.  Pinterest.

This has been talked about and blogged about to death but I had never experienced the motherly complex for myself that this wonderful tool has become known for.  I am calling it, the "Pin-Plex".

There I was, scrolling through my long list of pinned recipes when I noticed my cute little "Kimber" board I started back in my second trimester.  You know, that lovely point of pregnancy when you have the cute little baby bump, are no longer throwing up at every passing molecule, and when you still have it ALL figured out.  I have not been on Pinterest since that surreal stage of motherhood, back when decorating string cheese to look like snow men and applying 7 different oils while standing on your head and singing "Mary Had a Little Lamb" backwards in Polish to get rid of stretch marks all seemed very do-able. I slowly scrolled down the page and looked at all my good intentions.  The skirts.  The leggings.  The little DIY baby sandals and hair pieces.  

The anxiety increased as I saw all the things foolish second trimester me had labeled as "important".  The first birthday photo shoot/cake smash.  Would we have the money for that with all the unexpected expenses?! And the little girl in the photo with the cute Mardi Gras beads and tutu is sitting up! With Kimber's medical condition will she be able to sit up at that point?! 

We reached full on "pin-plex" when I came to the monthly "watch me grow photo".  Oh man!  Kimber is now 5 months old!  That's almost half a year!  Ask me how many pictures I have of her with a cute little sign that says how old she is and what milestones she is reaching?!  Ask me what cute little object I chose to put in those pictures with her to get an accurate account for how much she has grown?!  I will never get those months back! What was I thinking?! What kind of mother am I?! 

I took a deep breath and as I frantically sorted through my Kimber pictures to find a common monthly pose or theme that would work that in someway salvage my pathetic attempt at motherhood, the pictures of the last several months answered these questions for me. 

What kind of mother am I?  I am a real mother.

What was I thinking?! I was merely keeping my child alive.  Not knowing how many monthly photos we would have been blessed with (had the thought of monthly photos even had space to enter my mind) we lived the first several months day by day.  Literally.

What cute object have I strategically placed in her photos to show off how quickly she is growing?  How about her tiny little nasal cannula that delivers oxygen to her throughout the night?  Or the pulse-oximeter that has kept track of her little heart beat and taught me how to cue in to her little Kimber signs of discomfort due to her lack of a cry?

So here's my point: I am not anti-Pinterest.  On the contrary, I can pin with the best of them!  My point is, when did Pinterest flip from this cool concept of swapping ideas and recipes, to a check list of all the little things you MUST do to keep up with Momma Jones or you are a failure as a mother?

There is not some magical "pin home" where everything comes together and happy children skip out to school on time, in their perfectly color coordinated outfits, homework folders as neat as the classified folders in the White House, and snowmen string cheese in their totally organic homemade lunches.  There is not some magical "pin-fairy" who somehow grants a mother additional hours in a day so that she can put together 50 freezer meals (to be used ONLY in case of an emergency because she is making all those delicious looking 4 course meals I have pinned all over my "Food" Board).  Nobody's home is "clutter proof" and everyone has days where they sit down and plow through 8 loads of laundry in a day.  To be frank, unless you have the money to hire an additional body, you are going to have strengths and weaknesses, good days and bad days.

I'm not saying that we should all throw in the towel and say "Well it is what it is!  The house will never be clean, the laundry never done, and we will never have a good home cooked meal."  What I am saying is, let's all take a collective deep breath and remember where to draw the line.  If your child is eating three meals a day you get a point!  If you get to wear makeup at SOME point in the day (and who CARES if it's a half hour before your husband gets home or just before going out into the real world) that's a point!  If your home is "organized" enough that your family would be able to make it from your bedroom to the door in the event of a fire, point! (In that moment it really won't matter if the clothes in your closet are color coordinated and divided by season).  If you have time to laugh and smile as a family at the end of the day then you are doing it right!  So let's breathe in deep, crack open a coke (or other beverage of choice), allow ourselves some bad days and remember what matters most.  We are blessed!

A Special Kind of Mom

My child is "special needs".  That's the label they gave her at the hospital when they delivered her diagnosis.  I instantly found myself defensive of the term. What is "special needs"? Doesn't every child have different needs? Needs that could be considered special?  It's probably a severe case of denial and I'm sure some family psychiatrist is going to read this and invite me in to a consult, but as I looked at my perfect little girl I couldn't accept that there was anything "abnormal" or "wrong" with her.  She is just Kimber! And she is a perfect Kimber.

Over a month has passed since that day.  The day someone slapped a label on our little girl and started telling me all the things she would struggle with.  I have learned so much about things I never thought I would have to worry about but most of all I have begun learning what an honor it is to be mother to this special girl.

I have been hesitant to write this post because I feel very inadequate.  After all Kimber is only 4 months old.  We are just beginning our journey and I know there are mothers out there with children with much more severe diagnosis that have been doing this much longer than I have that could probably write this much better than I can.  It was when I caught myself saying that I would just write about my experience as Kimber's mom once she was "grown up" that I almost found myself laughing about it.  I know that Kimber is here to teach me about pure unconditional love.  I know she is here to teach me how to be truly selfless in a world that is so driven by a selfish desire for perfection.  I know that for me and Kimber, this will be a life long relationship that will look quite different from the typical mother daughter relationship because, you see, I am now a special kind of mom.

I am a special kind of mom. My world fell apart the day the doctors told me my little girl wasn't "normal" and I've watched this tiny girl rebuild it as she's shown me what is possible when you just don't know how to give up.

I am a special kind of mom.  I can operate feeding pumps, saturation monitors, and change an oxygen tank all in a semi conscious state at 3:00 in the morning.

I am a special kind of mom. While other moms make play dates for their kids and get togethers with their friends, I make therapy appointments and meet with specialists and doctors.

I am a special kind of mom.  While other moms celebrate their child holding up their head and rolling over, giggling and smiling, we celebrate the tiniest cry, the smallest attempt to suck, and the discovery of her hands.

I am a special kind of mom.  I spend a half hour feeding my baby a bottle and cheer when she is able to drink an ounce.  Then I spend the next half hour tube feeding her the rest of her bottle that she is just too weak to finish herself.

I am a special kind of mom.  When my baby goes to bed, instead of cleaning up after an energetic infant, I crack open the laptop and spend the next few hours researching her genetic disorder because even though most of it is stuff I've already heard and know, I continue searching, worried that if I don't I will miss that one little piece of information that could make a huge difference in her life.

I am a special kind of mom.  I put on a brave face and smile when strangers and friends alike tell me how lucky I am to have such an easy going baby.  After all, how could they possibly know that this is the source of my worry and tears. That her "easy going nature" is a constant reminder of her disability.

I am a special kind of mom.  It's a constant conscious fight for me not to compare my baby to other babies her age.  I ache to brag about her accomplishments but my heart sinks a little when I see other kids so easily do at play what we have been working for weeks in physical therapy to accomplish. Somehow they just don't feel as grand when I see the ease that these tasks come to other children. It's at moments like these when I catch myself again mourning the fact that Kimber's life will be more complicated than most that my little girl will flash me one of her crooked half smiles and I know she's telling me "Don't be sad mom. We've got this!"

I'm a special kind of mom.  I have a very special little girl.  So what, our life may be slower paced.  So what, we may work harder for each little victory. The fact that we have her here is nothing less than a miracle.  I will never complain that my miracle wasn't "perfect enough".  Because even though the medical world tells us something is wrong with her, she is the PERFECT Kimber.  She's exactly how she is supposed to be and she is here for a very special reason. She's already strengthened my testimony so much. 

Thank you all for your support the last four months! Here's to many more with our Angel Bean! 

Welcome to Holland

My grandma gave me a wonderful essay written by a woman named Emily Perl Kingsley at the beginning of this journey and I have read it over and over on those days when I've just wanted to yell, "IT WASN'T SUPPOSED TO BE LIKE THIS!"  It's called Welcome to Holland:

"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland."

Today we landed in Holland.  Kimber has officially been diagnosed with Prader Willi, a genetic defect on chromosome 15 for those who care about the medical side of things.  What does this mean you ask?  Well, it means Kimber will walk. It means Kimber will talk.  It means Kimber will go to school.  And it means Kimber is still our perfect little girl whose kicks and wiggles and smiles make us cheer! That's what we have chosen to focus on today as we have been processing this news.

There is no cure for Prader Willi.  It comes with some difficult challenges.  Kimber will walk, but it will be much later than other kids.  Kimber will talk but at first it may be very difficult to understand.  Kimber will go to school but possible learning disorders will cause her to work very hard for every grade she earns.  The biggest challenge facing our little "Kimber Bean" is that she will always feel hungry. Starting at about age 2 she will never feel full.  We will have to watch her diet very closely and make sure she gets the exercise she needs.

When I was pregnant I often thought about what life as a mom would be like.  After helping with two younger sisters over the past couple years I felt like I was prepared for the whole baby scene.

I imagined packing up my dolled up little girl into her carseat to run errands in town.  I imagined quiet moments rocking her as she nursed . And I imagined sleepless nights calming her when she cried.

I didn't imagine this.  I didn't imagine the oxygen tanks and monitors that we would need to accompany us on our trips in to town.  I didn't imagine having to learn to care for a G-tube site or prime a feeding pump every three hours when feeding time came around.  I certainly didn't imagine pumping breast milk like a cow for two months (and counting).  I didn't imagine that my sleepless nights would not include a sobbing newborn.  And I didn't imagine that I may need to lock my refrigerator and pantry to keep my little girl safe.

Yes, the duties as Kimber's mom are quite different than I imagined in my pregnancy dream.  From day one, it has been drastically different from the life I had felt I had prepared for, AND I WOULDN'T CHANGE IT FOR THE WORLD.  It's time to pick up our new travel guides and head down this new road.  I hear the scenery is simply incredible.

Is this real life?!

So on Tuesday we bid the hospital life goodbye and headed home!  We were so excited to be home and feeling incredibly blessed to be taking our little girl with us. We were on cloud nine as we practically floated out of Primary Children's Hospital and loaded up in our car for the two hour drive back to Cache Valley.  Well as we pulled into our driveway it didn't take long for the "joys" of parenthood to drop by for a friendly hello and to remind us that our wonderful nurses were long gone and now it's all up to us.

I think our first hour of being home is best seen through the eyes of my mother.  I now quote her:

"Kimber came home today at about 3:30 pm.  Alyssa phoned ahead and asked me to get some of her frozen breast milk out to thaw because Kimber would be HUNGRY when they arrived and it takes Alyssa an hour to pump.  So, picture this:  as the kids get out of the car it's obvious that Kimber has messed her pants (which everyone was thrilled about because apparently the last few days she's been plugged up).  However, when I saw "Little Bean" she was soaked in brownish liquid from her knees to her feeding tube sight.  I was so worried that the car trip had caused the feeding tube to leak, so we hustled in the house and began stripping her down.

Luckily the site was clean, but there was brownish muck everywhere else!  She still doesn't cry, but she was squirmy and pulling faces showing us her discomfort and displeasure as we hurried and did an impromtu bath right there on the living room floor. (Sponge baths for another week for her).  Meanwhile, Alyssa's milk is coming in and she's in major pain, but thought it best to get Kimber clean and fed first, before she started pumping.

Next came the challenge to assemble the feeding pump so we could get baby "hooked up" right away, and that was a hilarious site, as we began untangling hoses and checking Kimber's oxygen.  About that time Alyssa realized that they FORGOT TO TURN ON THE OXYGEN hours ago when they loaded Kimber into the car.  Poor little thing had done so well to oxygenate herself for the last three hours without any assistance.  Kimber had the look of "You guys are great, bless your hearts, but please just take me back to where they know how to care for me!"

We finally got Kimber feeding and I get to hold her because Alyssa is still worried about her reflux and it takes a watchful eye to keep her from choking.  Alyssa (with a huge sigh) finally begins relieving her own pressure, and we settle in with our pumps pumping on both ends of the couch, hers with milk output, and mine with milk input.

What's Shawn doing this whole time?  The minute he walked into the door he realized his smartphone wasn't connecting to their Wi-Fi.  (The carpets had been cleaned yesterday and the techs somehow disconnected the box).  SO while everything above is happening, Shawn is interjecting "Why doesn't the Wi-Fi work?"  "I can't figure out what's wrong with our internet!" every few seconds.  He finally goes into the crawl space under the house to find the connection and yells at Alyssa and I to grab the wire he's poking up through the floor on the other side of the room.  We just look at each other, down at our tubes and pumps and say, "Is he kidding??" Alyssa just shrugged her shoulders, and even good naturedly agreed to call the Internet company for trouble shooting directions which she yelled to Shawn from across the room, who was still in the crawl space.

The amount of luggage, hospital items, old mail, dirty laundry, baby gifts and new equipment was thick throughout the kitchen and living room, and about that time, Troy and Jared stopped by after work to see if I'm coming home soon to fix dinner.  I said, "Yes, I think I can leave now that Kimber's feeding is done."  Shawn looked like I had just abandoned him in a stormy sea with no life preserver!  "You're going to leave us??? LIKE THIS??"  Troy said something about "We'll manage" and chuckled his way out the door."

Luckily, after forgetting to turn on the oxygen only two other times now, we have gotten in to some sort of a routine.  Kimber is adjusting well to home life and wowed Dr Brown at her two month wellness check.  Dr Brown hasn't seen her since we were shipped off to McKay Dee over 6 weeks ago.  He got a little emotional as he commented, "this is NOT the same little girl I sent off to McKay" 

We are so blessed and once again so grateful for all of your support!

Welcome to the Infant Unit!

Wow! There's a lot to catch up on so let me see if I can do it with some sort of order.  First of all, it is true! We graduated! We are now across the hall from the NICU just waiting our 7 apnea free days before we get released to go home! Today makes day three without any episodes and we're starting to get a little excited.

But let me back up to the beginning of the week.

Monday was surgery day.  I've decided that as a mom NOTHING is worse than pre-surgery butterflies when your baby goes in for the first time.  The staff here was wonderful and answered all my questions before the surgery.  Each time I asked, "And this is done all the time right?  It's not a big deal right?!"  Each time they were so kind as to assure me that of all the surgeries they do here on these little babies, this one is the simplest and one of the most common.  My nurse finally told me to just think of it as an ear piercing in an odd place as it is basically the same concept.... More or less.... Believe it or not, that actually helped :) 

Monday morning we headed to surgery at 8:00. Right on time, surprisingly enough! (It seems nothing in this medical life we are living happens when and how it is supposed to. But this one did!)

We said good bye to our buttonless baby at the OR doors and were sent to the waiting room to wait for the hour it would take to do her surgery.

I've never been in a surgical waiting room before but wow, talk about a gentle slap in the face to just remind us that our two months in the NICU is really nothing to complain about!  As I glanced around the room I saw the sunken red eyes and frazzled hair of parents who had obviously been there all night long anxiously waiting for the occasional phone call to update them on their child.  I saw the crossword puzzle and portable DVD parents who had apparently been down this road many times before.  The phrase, "by the grace of God go I" popped into my head as I quietly took a seat and repeated to myself the words, "a g-tube is no big deal".

About 40 minuets later a surgeon came in to let us know that everything went well and she was on her way back up to the NICU.  Our Bean had a button!

A few hours after surgery they started her on feedings again.  Once she was weened off the ventilator and taking full feeds through her new tube with no complications or leaking, they decided she was stable enough to move across the hall into the infant ward.

We went to a G-tube class Tuesday to learn how to feed and take care of this new contraption and what to do should it ever come out. (If any mothers have any gtube experience and/or secrets feel free to leave them in a comment because I'm pretty sure all that class really did was show me all that COULD go wrong!) 

We were hoping to be home sometime this weekend but Kimber had a reaction to the morphine they gave her that caused her to have some apnea (or to stop breathing).  It's a common side effect in babies so while its not particularly concerning, hospital policy is that we can't be sent home until she has gone seven days without an episode so here we sit.

On Thursday we came in and Shawn and I stood at her crib for about 2 minuets trying to figure out what was different. When I picked her up to hold her it hit me!  Our little girl is oxygen free!

It was like giving birth all over again!  This was the first time I've been able to see her face without tubes and tape!  I love this face even MORE and we're so proud of her progress.

Kimber is weighing in at about 6 lbs 4 oz and her cheeks are starting to show it!  I can't believe people give birth to babies this size! 

Our friend Barb continues to come in every day and teach us things we can do to help Kimber continue to improve and develop like she's supposed to.  We love Barb! 

And finally, last night after crying for about 15 seconds her dad finally gave her her binkie which she eagerly sucked on for about 5 min with no problem!  I never thought I would pray so hard for my baby to suck and cry!  Thanks for the prayers! As you can see, they are literally working miracles!

Just keep swimming, just keep swimming...

I've heard the only people who get hurt on a roller coaster are the ones who jump off at the top.  So we grit our teeth and hang on for the last leg of this white knuckle ride.

Yesterday, we got to Primary Children's Hospital.  I thought I was ready for it this time.  Our nurses at McKay Dee warned me that it would be busy and noisy.  They warned me that I might have to fight to get answers or things that I needed.  They warned me that now more than ever I would have to be Kimber's voice.  That there would be babies MUCH sicker than Kimber and so it might be easy for us to slip through the cracks.

When mom and I got here, it was noisy, but that was ok.  It was busy, but I knew it would be.  The Ronald McDonald House was full but we could figure something out.  I was doing fine until I asked if I could just hold Kimber.  She was stressed out from the transfer and her stats were all over the place.  I know that she does better when being held.  My nurse reluctantly agreed but informed me that first I would need to put on a gown (no biggie) and latex gloves.  I LOST it.  Everything else I had been warned about, I could deal with, but now they were going to take something away that was SO incredibly personal to me!  The comfort of touching my little girl.  The ability to let her know that I was here.  How. Dare. They.

I wrote a quick note to one of my very good friends who has been an incredible example to me her whole life but who has also been willing to walk with me through this experience as it was not too long ago that she was on the ride with her little girl.  I quote myself when I write: "I know everybody loves Primary Children's but I'm not going to lie... I hate it."  To which she very appropriately replied "The good news is you don't have to love it. Just survive it!"

Each time we move hospitals it is such a roller coaster.  Not only are there new rules, a new hospital and a new staff, but everyone feels the need to constantly remind me how abnormal Kimber is.  I am well aware of this fact.  If Kimber was a normal baby we wouldn't be here.  However, I also strongly believe after the miracles I have seen this past month, that if Kimber was a normal baby SHE wouldn't be here.

The challenge through this is to keep keep our feet in reality, our eyes on the worst case scenario and then hang on to hope like nobody's business!  Shawn and I are aware that there are possible outcomes to this whole situation that we'd really rather not even have to think about.  We are aware that Kimber's life could be very different from what we have imagined for the last nine months.  However, we choose not to focus on these.  Instead we just keep a casual eye on them just often enough to know where they are at and what they look like.  We cling to the hope that our little girl is improving.  That this might in fact be something we can help her grow out of.  We cling to our belief in miracles and our knowledge that we have a loving Heavenly Father who knows what is best for all of us.  That's how we are able to get up every morning with a smile and how we joke and laugh amidst the frantic hospital environment, possible diagnosis and tests.  That's how we see each day with our little girl as a HUGE blessing instead of a trial.

Changing hospitals is always so hard because the new nurses don't understand.  They haven't seen the miracles.  They don't understand the logic of hanging on to hope instead of "facts".  I feel like sometimes they try to strip me of this by constantly reminding me she is "not a normal newborn".  Sometimes I just feel like firing back, "You're darn right she's not!" 

As we head down this last leg of our journey we ask for your continued prayers.  We ask for strength for Kimber to keep fighting and improving and we ask for peace, understanding, and patience for her parents, especially her mother to be able to survive this place.

Love you all! 

PS I should add that after a good nights sleep I am feeling MUCH better.  I was able to talk to the nurse and explain the importance of the sensation of touch and was able to strike a deal with her if I wash my hands EVERY time I come out of Kimber's isolette then she won't make me wear the gloves.  I feel MUCH better today and as we have met people who have traveled from countries away just to be here I am grateful for this resource that we have so close.

Hi-Ho Hi-Ho it's off to Primary's we go!

So I don't have much to say this time around except that she is doing great! Her reflexes are continuing to improve and her eye control has gotten MUCH better the last couple days.  Today I was able to enjoy about a half hour of good eye contact with her.

Tomorrow we head to Primary Children's hospital to get a feeding tube in place.  While we are there several specialists will be coming by but we have been warned not to be expecting any more answers.  

As soon as the feeding tube is in place they'll send us home to see what she does as she continues to grow.  We will be going home with oxygen, monitors and a feeding pump, but we get to go home!  We will have LOTS of appointments with different developmental specialists and therapists but we get to go home! 

Love this little girl and can't wait to bring her HOME! 

Tiny Improvements, Major Hope

In the NICU everything is tiny.  We use a tiny stethoscope, a tiny cannula, and tiny blood pressure cuffs. We have tiny cribs, tiny bottles, tiny diapers and tiny outfits.  We are all assigned our tiny corners with our tiny people where we wait day after day watching for tiny improvements.

Some days it feels like we are walking down a road through a long flat stretch of land.  With no landmarks in sight, it's hard to feel like we are making progress and as others zoom past us we wonder if we are making any progress at all.  Are we moving forward or are we simply using large amounts of valuable energy to just keep from sliding backwards and nothing more?  It seems at these moments, when I'm ready to just pull off the road and start making camp because it feels like we will NEVER leave this stretch of highway, The Lord blesses us with a mile marker.  A reminder that we are still making progress.

Today was one of those days and not a moment too soon!  

I was late coming over to the NICU today.  It took me three trips across the parking lot from the guest house to the hospital before I finally had all my stuff together that I would need to survive another day.  After almost a month at Mckay Dee I am loosing my mind!  NICU brain is SO much worse than pregnancy brain!

I was signing in at the front desk when my nurse came bursting out of our room, waddling as fast as her 7 month pregnant body would allow her.  She looked like an emperor penguin heading for open water and I probably would have laughed if it weren't for the nauseous sinking feeling in the pit of your stomach that occurs whenever you see your child's nurse coming at you full speed (whatever speed that is) :) 

I hung onto the counter like it was the only thing keeping me alive as I braced myself for whatever news she had for me that couldn't even wait until I had finished signing my name.  Once she reached me she gave me a HUGE hug and said, "Alyssa, I've been waiting for you to come!  I'm so excited!"  This totally threw me off guard and as I attempted to "reboot" she went on to tell me all the wonderful things Kimber was doing today.

First, Kimber CRIED!  A very short but distinct cry instead of a grunts and "squeaks" she has been making.

She passed her hearing test. (which has been up in the air for a while now)

She is beginning to wake up on her own moments before a feeding and while her eyes are still rolling back in to her head (a slight cause for concern) she seems to be focusing more and gaining more control.

Her movements are becoming less spastic and more controlled and purposeful.  Her "tricks" now include long stretches (after which she is able to pull herself back into the fetal position instead of remaining "floppy"), arching her back, moving her head from side to side, putting her hand in her mouth (which is also a sign of rooting), and grabbing her favorite "toy", her oxygen tube.

She is gagging when she is experiencing acid reflux and her poor little eyes "bug way out on stems" and start watering.  While this is alarming for the poor mother holding her, apparently it is a good sign that she is protecting her airway.

She still is struggling with her suck reflex but she has started rooting more while we are doing Kangaroo Care. (Or "skin to skin")

She hasn't had an episode of bradycardia or apnea in almost 48 hours.

All you new mothers, watch your little baby next time you have him in your arms and think of all the wonderful things he was born just doing!  It's amazing! We have anxiously watched, prayed, and cheered for our little girl as she has figured these things out slowly and surely.

We are scheduled with Primary Children's to get a feeding tube in place and then we are HEADED HOME! 

While asking questions to the nurse practitioner today (who was in total shock at what appeared to be over night improvements) she finally just threw up her hands and said, "You know, I'm not even going to attempt to tell you what this little girl is and isn't going to do because to be honest I never in a million years would have thought I'd be seeing what I am seeing today..."

Now, just to clarify, there are still a LOT of unknowns about what Kimber's mortal experience has in store.  We still don't know what her limitations will be or even how long we will be allowed to have with our Princess Bean in this life but we DO know that we have seen miracles.  We DO know the power of prayer and fasting and of priesthood blessings.  We DO know that we have a very precious little girl who is a real fighter.  

So while this could all change tomorrow, we celebrate these happy mile marker days, gather our baggage of unanswered questions and possible diagnosis and head down the road again towards the next mile marker because as long as we are putting one foot in front of the other we are moving forward!

Love you all! Thanks for cheering us on!

The One Month Milestone

Today Kimber turned one month old.  I woke up chipper and ready to do another day.  I got dressed and skipped my way across the parking lot and road the elevator up to see my Bean!  I softly sung happy birthday to her while I changed her diaper.  I explained to her that she had been in our family for a whole month now, a 12th of a year!  I wrapped her up in her Great Grandma's hand made blanket and plopped down in the rocking chair to celebrate this moment with some serious Kimber snuggling.

You think I'd be used to it by now but that dang NICU roller coaster decided to take my emotions for another little spin as we sat and just watched baby after baby be discharged.  Excited moms brought in new carseats with incredibly cute carseat covers.  Babies were unplugged from monitors and dressed in bright colored, brand new clothing and buckled in tight and then they walked out.  Just like that.  They had ridden this roller coaster to the end and were disembarking and heading off to ride some other ride at this parental amusement park we have apparently bought ourselves a ticket for.

NICU advice from Nurse Suzie Tip #2:

"At some point in this whole experience you are going to mourn the Gerber Baby delivery you had imagined your whole pregnancy.  When that time comes allow yourself to do just that for a moment."

So I did.  I quietly pulled the curtain around our little corner of the room to block out the busy nurses and slightly more developed babies.  I kissed my little girl on her forehead and I just let myself be sad for just a minuet.

Then there was a little squeak and a little bit of squirming in my arms and I looked down. 

Yes, it has been a long hard month and no, this is nothing like I had imagined it but she's still here! And despite all odds she is improving slowly and surely!  I wiped my tears, cracked open Little Brown Koko stories and became determined to enjoy this milestone.

If that wasn't enough to pull myself out of a funk, my wonderful husband hurried "home" from work and excitedly told me he had a surprise.

We enjoyed our first date night in over a month and boy did we ENJOY it!  Ruby River is one of our favorite steak houses. Honestly, I don't know what they do to that meat but it is like candy and just melts in your mouth... It was awesome!  We had a great waiter from Brooklyn who had the best accent and had us laughing and smiling through the whole dinner. 

On our way home from dinner my mom sent me this very timely picture.  This is taken from her yard and my house is LITERALLY at the end of the rainbow.

We reached a milestone today. But the journey isn't over yet! Our discharge day will come but in the meantime we will do our best to enjoy Little Brown Koko stories from the corner of the NICU and Shawn and I will enjoy our nights out with the help of the most expensive babysitting we will ever pay for :)

Life is good here at the NICU!  Happy one month everyone! Thanks for riding this crazy ride with us! 

Life's Tornados

The day we received news that we might have longer with our little Kimber Jeanne than we originally thought, a day that brought relief and hope back into the picture, was a devastating day for people in Oklahoma.  As I am seeing pictures and reading about the school children who were killed in this horrible storm, my heart goes out to those parents.  I pray for those parents.  For some reason we have been spared (for now) the horrible pain of losing a child.  But having stared that horrible beast in the face, as I sit here holding my little girl I can't imagine the horrible pain they are going through.

I had an interesting conversation with Kimber's nurse last night that has been eating at me.  She was attempting to prep me for what may be a long hard first year for Kimber and our whole family for that matter.  Since they have no diagnosis and have run all the tests they could think of we are forced to just sit back and watch and wait to see if she gets better or worse.  Doctors appointments, appointments with specialists, therapy and even further testing are in our future as new clues emerge.  As we talked and she was able to answer some of my questions she gave me some wonderful advice.  "It's going to be easy to lose your whole lives in doctors appointments and therapy," she warned. "But don't forget to make memories with her.  Make memories as a family.  Each day is with her is a gift.  Don't forget it." 

As I walked back to the guesthouse for the night, Suzie's advice kept replaying.  "Each day with her is a gift."  Through the last couple weeks I've had people tell me how "lucky" we are to have a "heads up" of sorts.  And as horrible as it sounds I understand what they are attempting to say.  Unlike these parents of the school children in Oklahoma or the parents who lose their children suddenly to SIDS or a number of other tragedies, we do have a heads up.  We have been told that something with our angel isn't normal and while at the moment we are unable to pinpoint it, we now know that there is still that possibility that her visit may be brief.

"Make memories with her. Each day is a gift."  Why does it take a tragedy for these words of advice to be spoken? Why doesn't every nurse leave every parent with this thought as they discharge them from the hospital?  Why don't we treat everyone like each day with them is a special gift? 

So bend down right now and pick up that baby that just pooped in his freshly changed diaper. Or go find that teenager who just about ripped your head off when you woke her up this morning.  Call up the parent or grandparent you just figure will be around forever and just talk because the fact is they won't be.  Life changes in an instant and we don't always get a "heads up."

Just one of our many life lessons being taught from our corner of the NICU.

A trip to Hell gives perspective...

By now the good news has made it's way around the large mass of people who have been so faithfully praying for our little family but for our family history purposes here it is:

On Monday we received back all of Kimber's test results.  Her blood tests were negative for Zelwaggers Sydrome.  This was HUGE news as this is what they were convinced she had that would only give her months to live.  But the good news didn't stop there.  Her chromosomes came back totally normal which threw out another big bag of horrible diagnosis.  The last remaining question was her MRI which we were previously told was abnormal.  After asking several pointed questions we found out that there were conflicting readings.  The neurologist and neuro-radiologist from Primary Children's sat down together and apparently spent hours combing over every inch of the MRI and the conclusion was that that is normal as well.

A week later there is still so much mixed emotion that I had a hard time putting my thoughts in to this post.  When I told my mom the news that they now have no diagnosis at all and as a result have no idea what to expect, she asked me how we were feeling about that.  I sat and tried to put it in to words for a long time and finally just told her you would have to be able to see inside my heart for the answer to that as I had no words to explain it.

 My dad heard a quote the other day that went along the lines of "you worry about losing your job until you have lost your job and you are worried about losing your house."  Likewise you worry your child will have developmental delays until you are told your child will not live past the age of two months.  We understand the road ahead will be far from simple as we have already been prepped for the year of intense therapy and follow up appointments we have ahead of us.  The doctors hope that as she continues to grow and develope that they will be able to pinpoint what could be causing her low muscle tone but as of right now they are completely out of ideas.  Kimber is developing and doing things they have told us she probably would never be able to do.  Shawn and I hope she will astound the medical world and just grow out of it with the help of therapy.

With all the change and ups and downs of the NICU we left this conference feeling guardedly optimistic for the first time since transferring down to McKay Dee.  As I expressed my slight frustration in not knowing exactly how to feel, I was reminded of a few things that remained unchanged and that will never change no matter what.  

We are sealed as a family for time and all eternity.  This means Kimber is our little girl and will ALWAYS be our little girl.  The Lord's will for our family was going to be done two weeks ago and is still going to be done.  I just have to continue to have faith in Him and trust that He knows what is best.  And the atonement of Christ is a PERFECT atonement and through Him ALL THINGS will be made right.

These things I know to be true more than I did a month ago.  I cling to this knowledge I have when everything else seems to be constantly changing.  I am so grateful for my little family and for the gospel in my life.  For a loving Savior and for the incredible family and friends we have been blessed with to support us through this trial.  Love you all! 

The Eye of the Storm

Hurricane victims often speak of the eeriness of the calm they experience during the eye of a storm.  The relief they feel in the sudden break of the raging storm is accompanied by the nagging feeling of fear and exhaustion in anticipating the end of the calm when the winds and the rain return in full force.  My first Mother's Day will be one that will always hold bitter sweet memories for me.  My first Mother's Day will forever be the climax of the storm followed by an almost eerie but overwhelmingly peaceful calm.

Friday, May 10, was one of those days every NICU mom fears.  It's that moment when you round the corner to enter your little baby's room only to find unfamiliar scrubs surrounding her little isolette.  A specialist from Mckay Dee hospital was in Logan and our pediatrician had asked him to just take a quick peak at our Kimber.  I called Shawn and he was there before the specialist had finished with his exam.  The news he gave us started us on what would be one of the longest, hardest weekends of our family's life.

He explained that they were concerned about Kimber's lack of development.  While she didn't have any huge and obvious medical concerns, they were worried about the amount of time she seemed to spend in deep sleep and especially concerning was the "floppiness" in her arms and neck.  He explained that even though she was premature and had a stressful birth (which can sometimes cause these conditions) it was not normal for it to be this severe or to last for this length of time.  He suggested we move her down to Mckay Dee Hospital in Ogden where they were more equipped to do the tests that we needed and would be able to consult with Primary Children's Hospital and maybe find us some answers.

The tests began as soon as we arrived and those first few hours were chaotic and scary.  We met new doctors, new nurses, answered questions, and asked questions.  At the end of the day we had lots of tests sent off and lots of theories but no answers.  An EEG was done shortly after arriving and it was discovered that our little girl was having seizures.  They started her on some medication but didn't know what was causing them so they decided to do an MRI.  Sleep did not come easy that night.  In fact I don't think we slept much at all.  Saturday was spent much the same way.  Lots of tests, lots of questions, not many answers.  Many of her test results were sent down to Primary Children's for a second opinion and consult.

Sunday morning, Mother's Day, we woke up and went down to the NICU.  Our doctor met us and asked for a moment to speak to us in a conference room.  He explained that they had looked at the MRI and that several specialists at Primary Children's Hospital had looked at it and while they had no official diagnosis the MRI is abnormal enough that they were advised to not bother with further testing.  Kimber's brain failed to develop properly sometime probably very early on in the pregnancy.  The front part of her brain is very smooth rather than having the folds and ridges seen on most brains.  He explained to us that while they didn't have an exact time frame, Kimber's body will eventually out grow her brain.  He explained to us that likely we only have a couple months with our little Princess.

I'm not even going to attempt to put into words the emotions in the room at that point.  Every fiber of my body wanted to scream.  As the doctor and nurses quietly and respectfully left the room, my wonderful husband held me tight and we cried for our little girl.

Shawn was able to give me a blessing.  I am SO grateful for a husband who holds and honors his priesthood.  As soon as the blessing ended there was the most peaceful calm.  I was reminded that there is Someone with a bigger plan and better understanding than I.

As I held my little girl, sang her songs and stroked her little head I felt a great peace and comfort.  I know that families are forever.  I am sealed to an incredible man who has been a great source of strength through this very hard experience and I am sealed to this precious little girl who for some reason saw me fit to be her mother.

We are so grateful for the support and love we have felt from family and friends around the world.  We have felt your prayers and fasting and have received strength we know is not our own.  

So while we know the full furry and hardest part of this storm is still ahead of us, when we hold our perfect little girl we are able to just enjoy every moment we are blessed to have with her.  We are so grateful this special spirit came to visit our family and we love her so much.

Thanks again for all of your support and please continue to pray for our little girl and our family as we prepare to make some of the hardest decisions of our lives.

Kimber Jeanne Nielsen: Birth Story

I had been struggling with preterm labor since the first weekend in April.  The first time I went in to Labor and Delivery I actually thought that I had been having Braxton Hicks contractions.  We had been in a couple times since then but they were always able to stop it and sent me home on bed rest.

Sunday morning April 28 at about 3:00 am I woke up with very different feeling contractions.  These felt more like cramps and so I got up and sneaked out of bed to call the hospital to see if I should come in.  I was told to take some of my medication and wait to see if that knocked them out.  If nothing had changed in an hour I needed to come in.  An hour later nothing had changed so I woke up Shawn and we headed in to Labor and Delivery once again.

We checked in and they tried giving me a shot of Terbutaline.  This had worked in the past but this time it just slowed the contractions down for a few hours.  The next step was just to pump me full of as much Niphidapine as my little blood pressure could handle.  In the meantime, my family was kind enough to swing by and provide a little entertainment and comic relief.

Beating everyone at Settlers of Catan WHILE contracting every three minuets

Dr Jared checks on things.  He concludes that I am pregnant!

By early evening the nurse came in and said the doctor on call wanted to see if I had dilated at all.  When she checked me I was dilated to a three (instead of the tight two I had been earlier) so we earned ourselves a night stay at the hospital.

Our nurse Brooke was awesome and helped Shawn understand the terms "dilation" and "effaced" by using some of the teaching models they use with students.

At about 2:00 am our nurse came in again to deliver the "good news" that we were being discharged in the morning.  I instantly broke down crying.  My contractions were more intense then when we originally came in and I was totally maxed out on their "magical" contraction stopping medication.  I practically begged her and told her they simply could NOT send me home like this!  She adjusted my monitors a little bit and was surprised to see that I was indeed contracting every 2-3 minutes.  She left the room in a bit of a rush and said she would be back after talking to the doctor.

A couple minuets later she returned.  She wanted to check my dilation again.  If anything had changed she informed me that they would need to move me to a delivery room because if Kimber decided to come she would come fast.  She went to check me and just stopped.  She very very slowly pulled back her hand and informed me that my water was bulging.  She THOUGHT I was still a three but wasn't going to try to verify at all because she was afraid of breaking my water.  They did a quick ultra sound to make sure Kimber was still head down (which she had been in every ultrasound since about week 20).  She was.  Another nurse came in and verified, head down.  They moved us to a delivery room to play it safe and said they were going to try really hard to help me last until morning so that my personal doctor (who was off for the weekend) could come in and make the final call.

Shawn called my mom at about that time so that Troy could come help him give me a priesthood blessing.  The only part of the phone conversation I heard was, "She's contracting really bad and they think her bubble could burst? and the baby would come really fast after that so they moved us into a delivery room just to be safe..."  By the time they got there I was officially in pain.  Troy looked at me and said, "Well Lyssa, it looks like your tail is kinked and it's time to get you in the barn..."  These Cache Valley boys and their cattle talk....

The nurses kept asking me to rate my pain on a scale of one to ten.  Well, when you've never been in labor or had a child before you have no idea where ten is so how am I supposed to rate my pain?!  My mom and Shawn were almost laughing because I would have a contraction that would take me to tears and then the nurse would ask me to rate it and my response would be, "I don't know.... maybe like a 3?"  I explained later that I didn't think I was in labor and if I wasn't in labor yet then this was going to get a lot worse before it got any better and I needed to save my numbers!  My biggest concern was that I would reach 10 and THEN they would tell me that labor was just beginning.

I eventually allowed the nurse to give me a half dose of fentanyl so I could sleep for about an hour.  By this point I had been up for a full 24 hours.  

The next morning (or a couple hours later) Dr Craig came in to check on me.  When she walked in the room she commented, "Ummmm, you look like you are in active labor...."  After checking my dilation she told me I was dilated to a 5 and was 100% effaced but that her major concern was that she felt little feet, not a head.  She called for an ultrasound machine and sure enough Kimber was now a breech baby.  Dr Craig tried to manually flip her (ouch....) but we haven't been able to convince this baby to do anything she doesn't want to since the very very beginning.  (I would be so grateful for this fighting spirit in just a few minuets) We were trying to decide if we should just wait it out and see if she decided to flip again on her own or if we needed to set up for a c section when Dr. Craig asked to see the ultrasound one more time.  It was then that she noticed that her cord had prolapsed.  She was ripping off her gloves as she told me, "Well, not only are we going to have a baby today but we will be having it by c section."  Just like that people started coming out of the wood works.  I honestly have no idea where they all were hiding but with in seconds the room was filled with people taking my blood, asking about allergies, and explaining what was all about to happen.  Shawn changed into some scrubs and we were whisked away.

Everything seemed to happen SUPER fast after that.  I had a spinal block done just before they laid me down on the operating table but there wasn't enough time for it to take full effect, so while I didn't feel any sharp cutting pain, I did feel a LOT of pressure.  Like getting run over by a truck kind of pressure.  To my surprise Shawn wanted to watch the whole thing.  When I asked him to describe the process later he looked at me and thought for a minuet and then said, "It was a lot like skinning a deer, but then they pulled out a tiny human being?"

And a tiny human being she was!  3.95 or officially 3 pounds 10 ounces and 16 inches long.  She had a full head of dark hair and later it would occur to me that I never imagined her any other way.

We had had a NICU nurse come talk to us when it was looking like the contractions weren't going to ease up at all and so I had thought I was prepared for a different delivery experience than I had been imagining for the last 7 months but when the moment came the reality hit. I was allowed a quick peak at my baby girl and heard only one of her squeaky cries before she was rushed off to get hooked up to medical equipment that would keep her alive for the first few hours of her life.  I didn't even get to hear her measurements above the commotion of all the doctors and nurses doing their thing to make sure my baby and I were stable.  It tugged at my heart and got those brand new mother emotions stirring when she was whisked away and I was left in a suddenly quiet OR with only the sounds of medical tools clicking as the doctor put me back together.  From the time Dr Craig has started ripping off her gloves in the delivery room to the time of birth was a maximum of 40 minuets.  What a ride!

I was sent to a recovery room where a wonderful nurse worked to get my pain under control.  I was so grateful when she called down to the NICU to check on the baby and was even more thrilled when she asked if she could bring the mother down to see her on our way to my hospital room.  I am so grateful to that nurse who shuffled furniture and medical equipment in that tiny room just so that she could get my bed close enough to allow me to hold one of my Kimber's tiny feet.

The Kimber Nielsen pit crew!

With in the first 6 hours Kimber no longer had to be intubated and within the first 24 hours was off all oxygen and breathing room air.  We have been blessed with no major medical concerns.  The hardest part is being patient while watching her grow!  We can't wait to take her home!

I Am a NICU Mom

                                       
Over the last 6 days I have repeated this sentence to myself over and over again.  It's an elite club, and I'm pretty sure each of us have started a blog from the bedside of our tiny infants as a way to cope with the ups and downs that each day brings.

I am a NICU mom.  I clock hours and hours in a small hospital room watching a screen that tells me her tiny heart and lungs are working like they are supposed to because even though it is monotonous to the nursing staff that runs from room to room, each little squiggly line comforts this mother's heart and helps me breathe.

I am a NICU mom.  I have successfully found sleeping positions in what could be one of the most uncomfortable recliners in the world because I'm afraid if I leave I will miss something.

I am a NICU mom.  I live for every three hours when I get to touch my little baby's hands and feet as I take her temperature and change her diaper.

I am a NICU mom.  I wake up every three hours throughout the night to sit in an empty nursery and pump breast milk for a baby who is 20 miles away and gets fed through a tube in her tiny nose.

I am a NICU mom.  I have learned phrases like "bradycardia" and "apnea".  I have watched my little girls heart rate drop, heard the screams of the various monitors, and learned breathe and watch her struggle to correct her tiny body's minor malfunctions.

I am a NICU mom.  I am on a first name basis with all the nurses and see them more often than my own family some days.

I am a NICU mom.  I wake up at 6 every morning just to sit and watch my phone for that call from the doctor to say that there's not much of a change from the day before which always brings on a flow of mixed emotion.

I am a NICU mom. I spend my days and nights in constant prayer and feel the prayers of so many other family members and friends.  I have felt the spirit comfort me in ways I never have felt before.  I spend my days grateful there is someone orchestrating this whole thing and have complete faith and trust in Him.

I am a NICU mom.  I have felt the presence of angles in my princess's room and know that they are coaching her and cheering on our little family.

I am a NICU mom and each day I spend in complete awe of this tiny little miracle and the fighting spirit she has been blessed with.

I am a NICU mom but first and foremost I am a mom.  I want what is best for my little girl and am her biggest cheerleader.  I can't wait to bring her home and show her what a wonderful place this world is.  We have been and continue to be so so blessed.  I am so grateful for the knowledge that families can be together FOREVER.  I am grateful for a wonderful husband who honors the priesthood he bears and uses it to bless our little family.  I am grateful for the great father he is to our Kimber and love the way they both light up when they get in the room together.

I am a NICU mom and I am so blessed!