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!