ONE

Miss Vivian is ONE! I can't believe it.  The past year has gone so fast, yet at times it felt like it was crawling! So much has happened and we feel like the luckiest parents in the world to have her sweet spirit bless our lives each day.  The past year has been the hardest so far, but also the most amazing.  I can't even describe how thankful I am to be Vivian's momma.  I love her more and more every day and I think one day my heart just might burst.

I wanted to write some things down so that we remember exactly how she was on this day, her first birthday.

• We are very involved with Birth to Three, physical, occupational, and speech therapy, endocrinology, and continue to check in regularly with a slew of other specialists.  The therapy has been amazing and so helpful.  Vivian doesn't always love it, but she's allowed to be feisty because it's what has gotten her this far.  
• She loves to be tickled and wrestle with Derek.  He can get some amazing belly laughs out of her and it is one of my favorite things to watch.  
• She's still primarily fed from a bottle but we are working hard on the solids.  We still feed her every 3.5 hours round the clock, although we are working on stretching it to 4-5 hours overnight.  Her glucose hasn't allowed us to do that consistently yet, but we're hoping for the best. 
• She likes green beans and sweet potatoes the most and is getting so much better at moving the food around in her mouth and working those little mouth muscles of hers.  
• When given graham crackers, baby puffs, or any textures other than purees she immediately gags and sometimes throws up.  Speech therapy will be helping us with her aversion to texture. 
• Vivian can sit up by herself, reach for toys all around her, assisted standing, roll from her belly to her back, and lay on her side with a little bit of help. 
• She still hasn't rolled from her back to her belly or started to crawl.  These are things we continually work on with physical therapy and I know one day she'll just surprise us and be moving around all over the place! 
• We still give her medication every 8 hours--the yucky Diazoxide.  We will be having some more genetic testing done next month in hopes of finding some more answers concerning her hyperinsulinemia which she has yet to grow out of.  
• We still check her glucose 2-3 times a day and it doesn't even phase her.  We can poke her while she's sleeping and she only stirs a little.  
• She loves music.  Singing songs, listening in the car, commercial jingles (currently the Cheerios commercial with moms dancing with their kids, and an obnoxious University of Phoenix song that is the melody of "If I Only Had a Brain" from the Wizard of Oz), performances on tv, toys that make music--you name it.  If it makes music she loves it. 
• She is nearing 20 pounds and has caught up on all of the growth charts for weight, height, and head circumference in a normal range.  (I'd list exact numbers but we see the pediatrician tomorrow for her one year well visit.) 
• She has been on 3 round trip plane rides and has been an angel on every single one.  
• Her hair continues to grow long and thick and auburn.  We get comments everywhere we go about how beautiful that head of hair is.  We thoroughly enjoy all of the comments. 
• She has two little bottom teeth that are the cutest thing ever.  We haven't noticed any more teeth coming yet but she sure does love to chew on every single thing. 
• She loves her minky blankets and won't eat or sleep without them. She always sleeps with the blanket on her face which drives me crazy but I've learned to calm down about it.  
• She actually fits in 12 month clothes, but can still squeeze into even 3-6 month pants.  She's a petite little thing.  
• She loves watching Daniel Tiger while she plays with her toys on the living room floor.  
• She still takes two naps a day and sleeps amazing through the night. However, there has been phases where she will wake up and cry out at night, but only because she wants to be snuggled or sleep in bed with us. 
• Her favorite time of day is definitely bath time.  The minute we walk into the bathroom she gets a big old grin on her face.  She loves to splash and suck on bath toys and I love to wash her luscious hair.  
• She loves to ride in the stroller and go on walks.  She also loves to stop at the swings while we're out on our walk. 
• She loves books and being read to--which we love because we love reading to her at night before bed. 
• She loves to watch High School Musical 3 on our bed while I take a shower, get ready, fold laundry, etc.  Again, she loves the songs and I'm so glad to have passed on my love of musicals to her at such an early age.  
• She loves watching other kids but gets very quiet and reserved around them.  Maybe she's going to be shy like her momma? 
• She just met her Campbell cousins for the first time this week when we went to visit Tiff and Jay and the kids.  They were all so sweet with her and she loved playing with them and watching their every move.  
• We like to face time with family and when we do she whines and reaches for the phone because she wants to hold it.  

Derek is starting finals week in his last semester of the didactic year! It is so exciting.  He has worked SO hard this last year and has done amazing.  He realized he has taken 63 exams over those 3 semesters.  He will start clinical rotations the first week of June!  I am so thankful for his hard work.  I know it has been excruciating at times for him but he always gives 100% in everything he does.  We are so lucky to have a husband and dad that will always provide and take care of us.  I am so excited for this little break coming up between semesters so we can play, relax, and see some of the sights on the east coast that we have yet to see.  

I know I will look back on this time of our lives with such fond memories and appreciation that we had this adventure as a family.  It helps that we have so much love and support from our families as well. I love my husband and my babe more than words can say!

My friend Karli took some of the sweetest pictures for her first birthday, and Tiff took some when we were at her house also.  

NICU Memories

I'm obviously still terrible at blogging.  One day I will do it regularly.  Hopefully soon.

I wrote this entry a while ago, when I was thinking about Vivian's stay in the NICU.  While it's still hard to even think about, I never want to forget the memories of how our little one came into our lives.  This list sums up most of what we remember about those dreaded but heavenly days.  (Get ready, it's lengthy.)

·     Vivian was in the NICU for 46 days.
·      We were told many times that our little one was super feisty.  We considered this a great thing because she was determined to get out of there.
·      Never had to be intubated.  Started on oxygen with a nasal cannula but was breathing on her own after just 3-4 days.  There were several times she was put back on oxygen but only on a room air level.  For the most part, she was a rock star at breathing.
·      Had a feeding tube for the majority of her stay.  She pulled it out on her own (again, feisty!) about 3 weeks before she was sent home. We were able to start bottle feeding once she was able to eat again, so she didn't have to have her tube placed again.   
·      Every 3 hours, her bum was changed, temperature checked, oxygen monitor moved, and fed through her tube.  They call this Care times.  We tried to be there for the majority of these Care times so that we could be the ones to care for our little one.
·      We practiced nursing a number of times.  She was just starting to get the hang of it when she was forced to fast due to tummy problems.  Which leads to…
·      There were 3 separate times when she wasn’t fed any food through her feeding tube.  She was sustained on IV fluids but nothing was put in her belly to help her belly get better.
·      Her belly issues were due to slow gut motility.  There were early signs of infection (a call in the middle of the night telling us she had bloody stool) but she never got necrosis in her bowels (thank heavens).
·      Since her belly was so sensitive, she could never tolerate the fortifiers they added to my breast milk.  These are what usually triggered her digestive problems.
·      She had a number of abdomen x-rays to see what was going on in that cute little belly. 
·      We FaceTimed with Derek almost every day.  He also watched on the webcam above her isolet when he was at school. 
·      Her glucose issues started to present themselves when they tried to wean her off the IV fluids.  Once this started, they had to prick her heel and test her glucose levels before feeds every 6 hours. 
·      The highlight of every day was when I could do skin to skin or “kangaroo care” with my mini baby.  After care time and while she was fed through her tube, I could hold her on my chest for as long as I wanted. Viv loved this snuggle time also and slept very well while her momma held her.  
·      She received a blessing from Grandpa and Scott Heiner one of the times they tried to wean her off the fluids in hopes she wouldn’t have to have a glucagon challenge.  Derek was there in spirit, with the help of FaceTime. 
·      She ended up failing the glucagon challenge, and after consulting with the endocrine team at Primary Children’s, the doctors started her on Diazoxide.  None of the nurses had ever heard of or administered this medication. 
·      On 3 separate occasions they tried to start a PICC line, since a good vein was beginning to be hard to find and she needed to be on IV fluids a while longer.  Each time she was poked 6-7 times, with no success any of the times.  This was especially traumatic for me.  Thankfully, she didn’t need to be transferred to Primary Children’s for a PICC line and they continued to find veins to place IV’s.
·      She had IV’s in her feet, arms, hands, and my least favorite—scalp. 
·      The doctors in the NICU often likened the NICU experience as a rollercoaster.  There are lots of ups and downs with the babies.  There were days Vivian made lots of strides and days where she had setbacks.  It was also an emotional rollercoaster for this new momma.
·      Her love of bathing started in the NICU, and especially loved getting her hair washed.  This was one of my favorite things to do with her, and a favorite thing to see for Grammy and Grandpa.
·      All of the doctors, NP’s, and nurses were amazing.  We always felt so lucky to have confidence that our babe was being cared for by amazing people when we couldn’t be there.
·      Some of our favorite nurses were KD, Tami, Cami, Janae, Katie, Natalie, and Kristy.  Kristy was her nurse the night she was born and the last night before she went home.  Teresa Warwood, one of the NP’s, willingly called Derek often to give him detailed updates of Viv’s condition.  Dr. Miner was the doctor who worked on her just after she was born.  ALL of the staff in the NICU was amazing and we will always remember their kind, loving gestures during the time we spent there.
·      It was so exciting when she was able to fit in preemie-sized clothes.  I also loved picking out bows for her. 
·      Viv took a pacifier as soon as she was born and loved to suck on it.  She loved it so much she would suck too hard and it would pop right out of her mouth if it wasn’t held in.
·      She loved the “frogs” they put on top of her blankets.  They were small bean bags that provide a little weight on tiny preemie bodies.  This was very comforting for Vivian. 
·      We got to know a sweet mom named Danielle whose babe was next to Vivian.  She was beautiful and kind and left some preemie clothes for Vivian with a note when her baby was discharged.  It was so nice to be surrounded by kind people during such a traumatic time.  

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We went and visited the NICU while we were in Utah for the holidays and it was great to see some of our favorite nurses and providers, and especially great to show them the progress Vivian has made.  While we continue to cart her around to countless doctor and therapy appointments, poke her foot to check her glucose, and force her to swallow disgusting medicine, not a day goes by that she doesn't smile at us and bring an overwhelming amount of happiness to our lives.  And then this long list of slightly heartbreaking memories is totally worth it.