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!