Treat Every Day Like Chirstmas

It's Christmas time.  And right after that the New Year.  That means its time for reflection, new horizons, goals and dreams.  At the Weaver house, the winds of change are blowing pretty hard this season.  And we're looking forward to a NEW 2016 and all the change that it brings.  But today, I am reflecting on days gone by.  Memories of the people and places and things that made me who I am today and remind me of what Christmas means to me.

Take a look at this Christmas Card picture from our family in 2011.

What do you see?  Christmas greetings.  Adorable kids.  Fun photography.  A tiny baby fighting for life. Cute owl graphics.  Snow, ornaments, family names. A sweet card sent out with love and care to share with family and loved ones the blessings of the season.

Do you know what I see?  Something missing.  Each image shows me a memory, and a piece that's missing.  My sweet friend Gabi made this card for us.  She used those same owls on a sign that hung in our home, and then in my temporary hospital home that year to help keep me focused on a healthy baby.  She used them on a website that helped raise funds for our tremendous medical bills.  And she used them here to convey the hope and future of our family.  Lives get busy, and I don't see her as much as I used to.  I miss that... That bottom picture of the feet is missing somethings, too.  Our talented friend Beth took that picture on a HOT July day in Oklahoma just after we discovered we were having our fourth baby, and this was our Big Reveal image to share with everyone.  This was in the days shortly after we had lost my big brother.  (FYI - standing like that and getting that shot was INCREDIBLY difficult and sweaty - Jake was 4 and the girls were 9: wiggly). Beth has moved on to Texas and is raising her own family now.  We miss her.  This image shows the hope we had for the pregnancy - which was dramatically cut short.  I miss the expectation we had for a more normal gestation and infancy. (Don't get me wrong, so blessed by what we got instead, but I mourn the loss of a dream.) I miss being a family of 5.  It was different; Finn changed everything. For the better, of course, but a definite divergence from where we were going. And my brother Brian.  He wasn't here all the fun.  4th niece/nephew. NICU days. All the holidays, birthdays, milestones and moments from the last 4 years and 9 months.  He missed it all.  And I miss him. He should have been here for that picture, and all that came after it.

And up to the top 2 images.  So much missing.  How hard for those 3 little faces to have to deal with a family torn apart by 70 miles, illness, surgeries, stress and separation for a total of 5 months start to finish.  They were SO BLESSED by all kinds of surrogates to stand in our stead as I fought for 2 lives, Britt tried to be in two places and once and all things to several people, and then as Finn started his journey into this world.  But Emma, Lara and Jake were missing things, too.  Normalcy.  Mommy. Daddy. A brother they were only allowed to see through glass and touch with one finger for the longest time. A baby that didn't get to come home for Christmas. They weathered that storm so well.  Built resilience.  Taught them many tough life lessons.  They are stronger for it.  I miss those tiny faces and those effortless smiles.

And my sweet, sweet tiny miracle baby boy Finn.  He brought joy to our world.  And pain, and stress, and lessons, and LOVE.  So much love. From every corner of our universe.  So many people were touched by his presence, prayed for his life, and loved him without even knowing him.  He spent that Christmas in the NICU.  Santa came to see him there.  We had a Christmas lunch in the car consisting of Lunchables and Capri Sun after we had opened presents at home just so we could see him and hold him that day.  He was missing in our home that morning.  And for the entire 3 months he spent in the hospital.  He was missing from that sunny day picture at the top of the card.  And his siblings are missing from this picture of him.  So much separation!  But so much to be thankful for!  

2011 - NICU

2015 - Santa's Workshop

Little Dream Weavers - 2015
Emma (13), Jake (8), Finn (4), Lara (13)

As we get older and the kids get busier, we realize that the pictures of all 4 kids in one place at one time are going to get fewer and further between.  But we always have the memories.  The blessings. The lessons that made us who we are.  Somethings may be missing, but nothing is missed.  Every detail to our story has been written by the best Storyteller there ever was.  We celebrate His birth and what he did for our world this Christmas season, and EVERY Christmas season.  Thank you God, for sending your son, Jesus, to be our Savior.  And thank you for being a better Writer of my story than I could ever imagine.

Merry Christmas

Hits so close to home

Team Finn’s Fans grew by two feet today.  Unexpectedly.  And it makes my resolve to be a part of this amazing organization even stronger.  There’s a sweet baby girl 70 miles from her HOME getting settled into her temporary NICU home this evening.  She probably won’t be able to attend the March of Dimes Stillwater March for Babies this year, but we will.  And this year, we March not only for Finn, but for sweet little Lucy, too.

Let me tell you about them.  Momma is one of my dearest friends.  We share so many things in common.  We can finish each other sentences, talk without even speaking, laugh at nothing and know why, and pick up a conversation 2 days later without missing a beat. She is part of the Stillwater March for Babies Committee, and since she knew she would have a newborn at the time of the walk, she and her family joined Team Finn’s Fans to help us meet our fundraising goals! Her older daughter is almost 2, and Finn loves her.  In fact, this was our Transformation Tuesday picture today:

Baby Girl #2 was due the 2^nd week of September.  Scheduled C-section for September 8.  Until last week.  Thursday her doctor said she had high blood pressure and sent her to the local hospital.  Friday, due to pre-eclampsia, they transferred her by ambulance to the same hospital I had Finn at.  Yesterday they told her it was a waiting game.  This morning they told her it was BABY DAY!  What a ride!  Lucy was born at 4:07 this afternoon weighing 3 pounds 8 oz and 15.5 inches long. 

And it’s not fair.  NO ONE should have to go through the fear and questions they are going through right now – and what we did 3 years ago.  It’s scary.  It’s tough.  It’s life threatening.  It’s just not fair.  That’s why March of Dimes is so important to me and my family.  We want to see premature birth eradicated.  Figure out why it happens; figure out how to treat it; figure out how to prevent it.  Save the Mommas.  SAVE THE BABIES!

While she has a long row to hoe, Baby Lucy should do alright.  Girls fare better than boys in the NICU.  She has great support.  All the research from the last 76 years of March of Dimes are on her side.  She’s a fighter!  And she is LOVED.

Here’s how you can help Baby Lucy and other babies like her:

• Buy a Team Finn’s Fans T-shirt
• Join Team Finn’s Fans and raise money for the March of Dimes
• Donate to our team and help us meet our goal

We want all families to be blessed with big, full-term, healthy, take-me-home babies!  Don’t you? Join us!

Got Rid of a Tiny Human

June 11, 2014

Do you see that?  That's me and my son, Finn,  this afternoon.  My son - the tiny human.  That started out so super tiny.  In case you don't know his story, Finn was born over 3 months premature at 26 weeks gestation weighing a whopping 1 pound and 14 ounces.  For the past 2 years and 8 months we have wished and willed and prodded him to grow and gain weight.  For the 84 days he spend in intensive care, we called every night to find out how much he weighed.  This past spring, we even had to put him on appetite stimulant medication to help him gain weight.  Happy to say, he is finally on the 3% line on the growth chart!  Woohoo Whooooooo!  And today in our bathroom, he tipped the scale at a stupendous TWENTY FIVE POUNDS!!!!! God is so good!

So, what's that got to do with today or this picture or anything, really.  Well, Britt and I have been on our ******** weight loss journey for almost three months now.  I, too, weighed myself this morning in the bathroom, and I have lost gotten rid of a TINY HUMAN!!!!! THIS tiny human, to be exact.  I weighed myself, too, and I am down 25 pounds from my starting weight - the exact weight of my toddler.  And I am not looking back!

I sure love you, Finn, but I am never going to carry this extra 25 pounds around, again.  And, BTW - you are getting pretty heavy yourself.  Mommy needs you to walk on your own two feet more!  :)

P.S. - For those keeping track, Britt has lost 36 pounds.  So proud of him!

But, I don’t want to push anymore...

You’re right.  It sounds whiny and selfish.  And you’re right, again.  Some days, I am whiny and selfish.  Some days, I am the exact things that cause my precious 2 year old son to drive me batty.  The biggest differences?  I can communicate effectively about it.  AND, I have opposable thumbs so I can TYPE about it and put in on the internet.  WINNING.

Parenting is hard.  Preemie parenting is a whole new ball game.  That, frankly, I didn’t buy tickets for.  They were given to me.  Forced upon me MONTHS before I was able to fathom the responsibilities that came with it.  While I can see them for the irreplaceable and miraculous gift that they are, there are times I want to say “NO, Thanks!” and give back the tickets to the crappy seats with the questionable view to the game with too many overtimes. But then, it’s the seventh inning stretch, everyone is happy and celebrating a comfortable lead, and I remember, not everyone gets to experience the game this way.  Not every Mom was trusted with the challenges of premature babies.  It’s an elite club.  One I am truly blessed to be a member of.

So, why all the baseball non-sense?  Because I have had a few of “those” days lately.  And it makes being a Mommy hard.  Life after NICU is not an easy road.  I am tired of pushing.  Pushing and pulling, coaxing and coddling, to get my baby to “catch up” to normal 2 year olds.  I often wonder WHY?  Why does he need to be normal or “within the range of normal” for a specific development?  We were often told in the NICU by well-meaning staff, and even by other preemie parents that were on the “outside,” that preemies were strong and resilient and that most of them in Finn’s situation (without specific medical complications at discharge) will “catch up” by 2 years old.  I am so grateful for a friend who I met for the first time when Finn was about 2 weeks old.  He was still in the hospital (of course), but I had come home to go to a party with some friends.  She was there, and she had a son who was 4 at the time who was a preemie – a surviving twin. She knew our story and who we were, and not 20 seconds into our very first conversation she told me, “They don’t all catch up.  People will tell you by age 2 he’ll catch up, but don’t be surprised if he doesn’t.”  Honestly, I hated her for that (we’ve talked, we’re over it – GREAT friends now!).  I hated that she had burst my bubble that I had worked for DAYS to build up just so I could come home to this party while my baby fought for his life.  Way to ruin my evening, Friend.  But looking back, I am SO GLAD she was so brutally honest with me.  While Finn is GREAT and PERFECT and WONDERFUL, he is tiny, and has lung problems, and some hearing loss, and speech delays, and feeding (texture) issues.  And he’s TWO.  He is not your average 2 year old.

This was all brought on by the milestones he has reached recently, and the ways in which he is still behind.  Right around his second birthday last month, Finn’s vocabulary really JUMPED!  We were so excited as 3 words became 10, 10 became 20 and 20 become 50 in a very short period of time!  The “plan” we had written with our Child Development Specialist (that comes 1-2 times a month to assess Finn, and has since the day he came home from the NICU), has indicated we wanted him to have 50 words, so we were THERE!  YAY!  Celebrations abound!  Until, she says, “OK!  Now, when I come next time we have to write a new plan with new goals.”  *sigh*  Over the last 2 years, we have done this several times.  Written a plan, met the goal, written a new plan.  He had a plan to get off the supplemental oxygen.  He had a plan to roll over.  To push up, sit up, stand up; crawl, walk, run; chew, babble, talk… And on and on and on.  We’re always working towards the next goal.  Always pushing.  Always pulling.  What if I don’t want to try so hard anymore?  It’s tiring.  It’s frustrating.  It’s disappointing when there is no progress.  Finn is still very much the same personality he was in the NICU.  He is stubborn.  Wants to do things his way and in his own time.  He was often on the brink of something good happening during his hospital stay (off the oscillator, on to bottle feed, etc), and he would regress and we would have to wait several days to get back to that point.  He is still the same way.  Reminds me of all the roller coaster dips and turns we took 2 years ago.

Here we were at 50 words, and we hit a plateau.  No new words.  No stringing 2 words together.  No sentences.  And, we noticed his eating habits were getting worse and worse, not better.  In his imaginary perfect world, he would like to survive on PediaSure (but only the vanilla or strawberry; hates banana, and I hate the chocolate because it stains) and Goldfish alone.  And because ANY food or calorie intake is better than none, I am pretty sure a few days he does just that.  But, that’s not what ne needs to be doing.  He gets 2 bottles of PediaSure a day.  (At an average of  $1.67 per can, that’s $3.33 a day, $23.33 a week, $95 a month – his drinking habits cost more than any of his brother and sister’s lessons or activities).  Some days, he gets 3 (cha-ching).  Plus, the 2% milk – typically flavored with strawberry or chocolate just so he will drink it.  He will only eat things that are crunchy (cookies, crackers, chips, cereal).  Nothing smooth (aside from an occasional pudding), slick or slimy.  This includes all fruits and vegetables.  His favorite meat is chicken.  And yes, we feed him beef, pork and shrimp but tell him it’s chicken.  It works.  Like 20% of the time.  The WIC nurse was upset with me at our last appointment because he doesn’t eat fruits or vegetables.  I was tired, and I know.  So I said, “OK.  YOU try to feed him and see how it works.”  I know it was rude, but did she honestly think I didn’t know he needs a balanced diet?  HE WON’T EAT!  Anyway – I know all the talking and eating issues are related.  He was intubated for 7 weeks.  That’s a super long time.  

Finn. Early days. Intubated.

So, here we are.  Pushing again.  He has decided the Buddy Fruits blended fruit puree pouches are acceptable again (when he was first introduced to solids we relied on these heavily, but he started refusing them months ago).  But only certain kinds.  I can't keep track of what he likes and refuses to even get close to.  You should se the fits he throws when he thinks we are trying to "trick" him with real milk instead of his beloved PediaSure.  Good times.  We are sneaking in veggies where we can, with limited success.  Our “plan” for this next 3 months is to get him to eat a better variety of textures, and to get to 2 word combinations (blue ball, bug truck, my fork). 

We talk and talk and talk to him to get him to repeat us.  Even if we’re tired.  And don’t want to.  And we throw away more food than you can imagine trying to get him to try just one more thing.  We could feed a third world village on Finn's scraps.  There are days when I really just want him to be “normal.” To have a “normal” day without constantly working with him to make some grandiose stride towards a goal.  So, I let us have those days.  Days where I don’t push and I don’t worry and I don’t force.  But then it’s right back to the pushing.  It’s not about me.  It’s about Finn.  And his future.  We have no idea what that will look like, but as parents of this precious miracle, it’s our job privilege to make sure he is ready.  So we push.  Day after day.  Month after month.  And, it’s totally worth it.  Even on my worst days, my most dramatic whiny and selfish days, he is so very worth it.  

Letter to Finn at 2

Happy Birthday, Finn!

Today, you turn 2 years old.  Marks the second anniversary of the scariest night of my life.  The longest 3 months in the NICU, and the fastest 21 months since then!  WOW!  What a journey we have been on. You, and your minor medical issues, your Dad and I learning how to be parents to a micro-preemie along with 3 big kids, and our whole family as we learn to adjust to your ever changing ways!  You have made our family complete.  And completely crazy!  Wouldn't have it any other way!

Son, you have met so many challenged head on!  And tackled them with the tenacity you have been known for since day one.  Walking was slow to come this year, but at 18 months, you got it, and never looked back!  You are still my finicky Finn, and refuse basically any kind of fruit or vegetable (which the WIC lady lectured me about), but when you do find something you like to eat, you gobble it up!  And, I think you set some kind of record this morning for guzzling down your Pedia-Sure in under 2 minutes!  WOW!  You've got "HANGRY" (angry hungry) down! 

I can count about 30-40 words you use consistently.  That's HUGE - and has all come in the last 6 weeks.  Before that, all you said was UP.  Up meant the opposite of whatever was happening at the moment.  If you were down and wanted up, you said UP.  If you were up and wanted down, you said UP.  Hungry? UP Sleepy? UP Shoes on? UP!  Up Up Up! LOL!  We are so glad you have a bigger vocabulary now, and we are enjoying hearing you talk.

You are right in the middle of the typical twos.  You are great at throwing a fit when you get frustrated.  I have been bitten a few times, as has Nana the Wonder Sitter.  And we cringe every time you bang your head against our hard floors.  We have a hard time figuring out what you want, be we always try!  It's no fun to see you so frustrated!  And, you still pull your hair - sometimes to sooth yourself, and again hen you are mad!  Silly boy!

You can point out and say by name: Pistol Pete, Eskimo Joe and Buffy, Mickey Mouse and Elmo.  You love to watch Mickey Mouse Clubhouse in the mornings as everyone gets ready!  And your favorite activity at the FUMC Early Childhood Center you go to 2 days a week is water play! 

You are so fun to be around and to watch grow.  You are a miracle.  And a blessing.  And you are ours.  We all love you so very much.  HAPPY BIRTHDAY!

Dream Weaver Prints (click for larger)

October! You're here!

It's my favorite month!  My birthday, autumn colors, pumpkin flavored everything, Jack-o-lanterns, HALLOWEEN!  And, this weekend, miracle baby FINN WILL BE TWO YEARS OLD!  How in the world did that 2 years go by so very quickly?  Seems like yesterday we brought him home from the NICU!  And now he's a healthy, happy, walking, talking, CRAZY toddler!  We couldn't be more blessed!

The end of September here in Oklahoma was a HOT one, but the cool down has started and should stay it sounds like.  We took time this past weekend to thoroughly clean out both boys' closets.  Made them try on every pair of pants we owned!  Did this about 2 months ago, in preparation for the Fall Adorable Affordables consignment sale, but they have both grown since then!  It was time to do it again!  Needless to say, I have a GREAT start on next year's fall sale!  We also took out all the summer stuff that was too stained to keep, or too small to wear.  So, the Spring sale has a good starting point as well. 

We are also gearing up for my cousin's wedding in just a few weeks!  We are all looking through our closets trying to find wedding clothes to wear!  Emma and Lara have it easy - they are candle lighters in the ceremony, so they have dresses all set to go.  (Although, come to think of it, Emma's is still at the alterations shop...  I need to check on that!).  Finn's birthday is this weekend; I'm hoping he gets something suitable to wear as a gift.  Jake got a nice dress shirt at the consignment sale, and we bought him slacks this weekend.  He wants to wear a tie.  A neck tie.  A "REAL" one!  Gotta do some searching for that.  And I have a black dress.  That should work.  Britt has a few shirts to pick from - we will look FABULOUS! LOL!

Someone in my office today asked how the Weaver's were doing it up big for Halloween this year.  Sadly, I don't think we are.  The girls are past dressing up, and Jake doesn't want to "play my game" and dress in a theme with his baby brother, so I think we'll just wing it.  I don't want to spend a lot of money on it, either.  October is an expensive month around here!  In my dreams, I had Jake dressed as Sully and Finn as Mike from Monsters U.  Then, Emma and Lara were going to dress up as some of the sorority monsters from the movie as well.  Again, no one wants to play along. *sad face*

But, we can still have some Halloween fun!  Dream Weaver Prints is getting in on the deal, too!  Have you ever Boo'd someone?  Ever been boo'd?  Well, here's your chance!

 

Over in the Dream Weaver Prints ETSY shop, there is a new item!  All the information and templates you need to start a "Boo-ing" craze in your neighborhood!  Or, in your place of work!  Check it out. and HAPPY HALLOWEEN!

Day 20: 26 Days of March of Dimes

Day 20: NICU Nursing

Another weekend post about March of Dimes, another Pinterest Palooza!  This time, the focus is NICU nursing!  We would be so lost with out the warriors of this wonderful profession! Here is a GREAT article "Dear NICU Nurse" to read that we came across last week.  It really touched our hearts, and we hope it can give you a glimpse into the lives of NICU parents and NICU nurses.

And then, on to the PINS!  (Click on each thumbnail to see all the pinned goodness!)

NICU Nursing:

NICU Nursing:

LIFE AFTER NICU:

I'M A NICU NURSE:

NICU RESOURCES:

That's just a quick view into the lives and views of these amazing nurses.  We had the best of the best, and we are so grateful for it!  They are some of the March of Dimes GREATEST supporters!  You can be, too, by DONATING to Team Finn's Fans and help us Save the Babies!

Day 16: 26 Days of March of Dimes

Home After the NICU

• Learn about your baby's condition, treatment and care.
• It's OK to feel worried about bringing your baby home.
• Find a provider to care for your baby outside the NICU.

Bringing your baby home from the NICU

It’s great that your baby’s ready to leave the NICU! You must be so excited to take him home. But you may feel worried and scared, too. It’s OK to feel this way!

Life after the NICU

 

After your experience in the NICU, you have become a NICU graduate parent. Your child is a NICU graduate. Congratulations!

You will look back on the time you spent with your child in the NICU and see how the experience has changed your life. You may find you have strengths and passions you didn't know you had.

You may feel that your experience has changed you forever and that you want to help others who will walk this road after you. Consider the following:

• Stay connected with the other families you have met and become friends with in the NICU. Exchange contact information. You and these families may have things in common even after your babies leave the NICU.
• Keep in touch with your baby's NICU. Send updated photos to the staff. Visit the NICU. Speak to a parent group. Attend NICU family reunions.
• Find support groups that help you parent your child.
• Get involved with the March of Dimes. Our mission is to help babies like yours and to support parents like you. Learn about the NICU Family Support project and our Prematurity Campaign. To get involved, find your local March of Dimes chapter. Share your baby's birth story and get support from other NICU families on Share Your Story. Your experience, your story, your passion and love for your child are so vitally important to other families and to babies born too small, too sick or too soon.

Parents have to decide how they will incorporate the NICU experience into their lives and the lives of their children. As time passes, most parents find themselves involved in other aspects of their child's life. Their memories of the NICU fade as they watch their child grow and face new tasks and challenges, such as walking, potty training, preschool and more.

Remember: You and your child are strong. Be proud of all that you have come through together. Look forward to and cherish the celebrations ahead.


Source:  http://www.marchofdimes.com/baby/home-after-the-NICU.aspx


And in other Team Finn's Fans news...  

THE SHIRTS ARE HERE! 

Thank you Custom Ink for a job well done!  We think they turned out GREAT!  We have started distributing them!  Can't wait to see the whole team on Walk Day! 

Day 15: 26 days of March of Dimes

In the NICU

 

• In the NICU, your baby gets special medical care.
• Get to know the NICU staff who take care of your baby.
• Ask questions and get involved in your baby's care. 

Which babies need care in the NICU?

Many babies are admitted to NICUs. Here are some of the reasons:

• Premature birth
• Difficult delivery
• Breathing problems
• Infections
• Birth defects

Birth defects can include problems with the heart, body chemistry (metabolism) or structural systems of the newborn.

Becoming a parent in the NICU

 

You've had a premature or sick baby. If your baby was premature, most likely you are still reeling from the shock of your baby's arrival weeks or months before your due date. You may never have fully adjusted to being pregnant, much less being a new parent. You may feel distant from your baby--and the busy, hectic newborn intensive care unit (NICU) environment doesn't make it any easier. But this is an important time for you and your baby to get to know each other and for you to gradually take on your role as mom or dad.

Coping with the NICU roller coaster

For many families, a baby's NICU stay is like a roller coaster ride, with ups and downs, triumphs and setbacks. Of course, the parents are also along for the ride. The following tips can help you deal with your baby's ups and downs.

• Give yourself permission to cry and feel overwhelmed. You may be concerned that if you let your feelings flow, you’ll never be able to pull yourself back together. But you will. Allow yourself to feel this release of emotion.
• Establish a routine. Find a way to balance work, home life and visiting the hospital. Allow yourself to leave your baby's side when you are comfortable doing so. Your baby needs you, but it's also important to have time for yourself, with your partner and with your other children. Also take time to do things you enjoy, such as exercise. These restful breaks will help you find the strength to keep going.
• Connect with other NICU parents. These parents share many of your feelings and struggles. Share your experiences, informally or in a support group. Ask NICU staff if there are graduate NICU parents with whom you can connect for support.
• You also can connect with others who understand what you’re going through at the March of Dimes website, Share Your Story. This online community was created especially for families who have faced the frightening experience of having a baby born early or with a health condition. You can ask questions, participate in online chats, share your own story by creating a blog, and read about other babies with similar health challenges.
• Explore your spiritual side. It might be helpful for you to reflect and lean on your personal spiritual perspective. You may find comfort speaking with a pastor, priest, rabbi, minister or imam. It is normal for this experience to challenge your religious and spiritual beliefs. In any case, remember that prayer, meditation or quiet reflection can help you find emotional strength and hope, and can guide you through this challenging time.
• Keep a journal. Expressing your feelings on paper can help you cope with and move through them. A journal also strengthens your hope and patience, by reminding you how far you and your baby have come.
• Vent your frustrations. If your baby has a setback, you may be plunged back into fear and anxiety. Voice your fears, and hope for the best.
• Celebrate when you can. When your baby makes progress, dare to experience the joy.
• Accept the support of others, however clumsy it may seem. Let people know how they can best help you.
• Accept that you and your partner will react differently. Share your experiences and listen with empathy so that you can feel supported. 

source: http://www.marchofdimes.com/baby/in-the-nicu.aspx

 

Day 12: 26 Days of March of Dimes

NICU Family Support

Finn and the Weavers are so THANKFUL we were in a hospital with a March of Dimes NICU Family Support person on staff!  It was not until I left and got home and started talking to other people about their NICU journeys that I realized how truly LUCKY we were to be where we had one.  Julie was such an INCREDIBLE blessing to me, to Finn, and to our entire family!  I wish everyone could be in a facility with a coordinator like her!

What the Family Support program is all about:
      We work to improve the health of babies across the country.
            Programs are aimed at supporting moms-to-be and professionals.
                  We offer comfort and support to families with a baby in the NICU.

March of Dimes services in the NICU

The hospital-based NICU Family Support® program provides information and comfort to families during the NICU hospitalization of their newborn, during the transition home, and in the event of a newborn death; contributes to NICU staff professional development; and promotes the philosophy of family-centered care in NICUs. NICU Family Support is present in more than 100 hospitals offering services to more than 75,000 families each year.

NICU Family Support Level I Program
The Level I Program provides NICU families and staff with supportive print materials in English and Spanish from the March of Dimes that they can take home, and a unique webpage with access to information on procedures and conditions common in the NICU on both the March of Dimes and the hospital’s websites. Parents and family members also can connect with other families who share the NICU experience by accessing shareyourstory.org. NICU staff have access to online forums and webinars that allow partner hospitals in our network of NICU Family Support sites to exchange best practices and innovations.

NICU Family Support Level II Program
The Level II Program provides training, technical support, tools and materials to your NICU staff to assist them in supporting families. The Program includes everything in Level I as well as other added benefits. Hospitals will receive an in-depth assessment of the state of family support in their NICUs with recommendations for change and ongoing site management by national March of Dimes staff. Also offered are innovative, family-centered seminars focused on parent-staff communication, caring for families in crisis, and caregiver fatigue for NICU staff, led by expert March of Dimes trainers.

What our network members are saying
“The March of Dimes has set the standard for NICU family support across the nation. The program has been a model for the hospital-wide family support program, and I am proud that our site has been a model for others around the country as well.”
- Dr. Billie Short, Chief, Division of Neonatology Children’s National Medical Center, Washington, D.C.

“This program has enabled us to connect parents of NICU graduates to parents with babies in the NICU through walks, meals and conversations. We’ve created a Family-Staff Advisory Council to bring family feedback into our planning and decisions. We are connecting parents with counselors to treat depression and Post-Traumatic Stress Disorder.”
- Dr. John Evered, NICU Medical Director, Saint Charles Medical Center, Bend, Ore. 

source: http://www.marchofdimes.com/mission/march-of-dimes-services-in-the-nicu.aspx

Day 6: 26 Days of March of Dimes

March of Dimes Breakthroughs
This year marks the 75th year of the March of Dimes.  In those 75 years, they have made many important medical discoveries and breakthroughs that allow micro-preemies like Finn, and ones born even sooner, a chance at survival.  We are so thankful for this organization and for all the milestones that have made!

1950's: In the 1950's the polio vaccine was the calling card of the March of Dimes.  This is the same polio vaccine that is used today!

1960's: Newborn screening for PKU was introduced.  Newborn screening for PKU and 29 other serious conditions help keep babies safe.

1970's: Marks the start of Newborn Intensive Care nurseries.  These specialized care areas save the lives of thousands of premature and very sick babies each year.

1980's: Surfactant Therapy is introduced.  Surfactant is a mixture of fat and proteins made in the lungs that is important for the lungs to develop properly. Premature infants may be born before their lungs make enough surfactant. Low amounts of surfactant lead to poor lung function.  This new therapy helps tiny lings to breathe.

1990's: The March of Dimes leads the effort in folic acid education in pregnant women.  Mommies being better educated about the benefits of folic acid leads to fewer babies born with neural tube defects.

TODAY: Now, the March of Dime is preventing premature births and are helping more babies get the strongest, healthiest start!

It is my hope and dream that someday, no mom has to endure the shock and trauma of delivering a baby prematurely, having her dreams of a pregnancy and delivery literally ripped from her.  And that the roller-coaster ride of an extended NICU stay can be eliminated, and the newborn experience can be just as expected, instead of behind closed doors, in a sterile environment where a Mommy and Daddy can't even hold their child for days, weeks, or even months.  Will you help us?  You can donate on Finn's Fans March for Babies page.

***The US preterm birth rate fell for the sixth consecutive year in 2012 to 11.54 percent of all births, the lowest it has been in 15 years and a 10 percent decline since the 2006 peak of 12.8 percent, according to the National Center for Health Statistics report.

Source: http://www.marchofdimes.com/mission/mission-75.aspx

Thanks and Giving

Last week, the Dream Weavers were invited to an event celebrating the achievements of numerous blood donors associated with the Oklahoma Blood Institute.  They gave out awards for chapters, locations, drives, and individuals who went above and beyond to make OBI successful this past year in their efforts to save lives.  We were honored to be invited, and even more honored that our Finn was a special guest at the event!

The nigh started with introductions, and then a nice dinner presented by Oakwood Country Club in Enid.  After dinner was well underway, the presentations began.  When it was time for our area, Finn was introduced, and Britt and I got to take the podium and briefly tell our story of how 6 blood transfusions saved Finn's life during his 84 day NICU stay.  We are so grateful for the organization, the blood drives, the staff, and especially the donors!  One of the most special moments of the evening is when we got to meet one of the specific donors whose blood literally saved his life!  Her name was Kristi, and she sat at our table for dinner.  We really enjoyed chatting with her and getting to know her better.  Finn, who is usually very stranger averse, took right to her and charmed her!  He was a little rambunctious during dinner, but he was the hit of the party!

April 2012

August 2013

The Key Note speaker for the night was a young man named Tyler who lost a leg and had NUMEROUS injuries from a grain elevator accident in 2011.  He had 96 units of blood during his extended hospital stays and various surgeries.  He has made it his life  goal to donate back all 96 units.  IF he donated every time he was able, it would take 15 years.  he has a good start!  We were incredibly blessed by his talk, and were honored to meet him!  He is an OSU Cowboy, as well, so he is a GREAT role model for Finn!

For being a part of this incredible night, Finn received a giant gift basket!  It had a Mike Gundy signed football, a cute little outfit, a bath set, gift card for a photo session, candy, cards, and a HUGE teddy bear made out of OBI Bedlam Blood Bash t-shirts!  It is bigger than he is - and we will cherish it always!

Last week we also celebrated Britt's 49th birthday!  He has been legendary since 1964, and we love him so very very much!  We showered him with "As Seen on TV" gifts, and took him to eat at  Fuzzy's!  What a great day!

Back to school shopping is almost complete, and enrollment verifications are half done.  School starts in 2 weeks!  WHERE has the summer gone?!?

Thursday Thoughts: Life After NICU

Today is the last day for WEEKS with nothing listed on my cozi calendar outside of work commitments.  This next couple of weeks are CrAzY ones! T-ball games, an appearance at an OSU baseball game, dance company auditions, recital, 5th grade graduation, talent show, the girls' birthday party they turned 11 on Tuesday!  Such amazing young ladies!), and more I am sure I am forgetting!  I love all the fun and festive activities, but the pace makes me a Mombie (Zombie Mom)!  Oh, and did I mention we are still trying to get those last pesky boxes out of the garage?  We're at the point with unpacking where we don't miss what's still missing.  We know its out there, but getting to it is hard..  I'm hoping for a burst of unpacking energy on Saturday morning...

In the meantime, it's been a time of reflecting on our journey with Finn.  We know of a young mother who's first baby is just a few weeks old and still in the NICU and she is frustrated with her predicament.  She feels it is so unfair.  We totally understand and sympathize.  We learned of a 9 month old preemie baby who died this week.  He was a triplet, with one baby dying in the womb before birth, and now he has joined his brother in heaven.  The surviving brother is doing really well, but we cannot imagine the immeasurable pain this family is suffering from.  It reminds us how blessed and lucky we really are.  We have been focused on Finn's lack of language,but compared to what a lot of our preemie parent friends go through, this is so incredibly minor!  Plus, we are hearing a lot of parroting this week, and he tells us no all the time, so he is getting there!

On this day, we are lucky enough to have our birth story featured on the Life After NICU page. We hope our story can help someone else cope with the roller-coaster ride that is life in the NICU.  We want to provide hope and peace.  We pray daily for other families on this journey.  We are privileged to be preemie parents, and blessed to know so many others on this emotional path.

Free Printable from Life After NICU

One Way (Finn's Way)

Hard to believe it is March 5 – ALREADY!  And Finn is 17 months old.  WHAT?!?  But, February was a blur.  With him being sick, in the hospital, and a short month, it FLEW by.  So, yes, Finn is 17 months old.  He is standing on his own for 20-30 seconds, babbling up a storm, has 10 teeth (2 molars on the bottom!), eats everything he can (but yet we still have to supplement with PediaSure – he just doesn’t GAIN), and weighed in at 19 pounds 7 ounces – fully clothed with shoes (Tiny Toms! So cute!) – at the doctor yesterday.  He is a SUPER FAST crawler, and is in to EVERYTHING!  If you can’t find it, check the drawers and cabinets he has been opening – Nana found a missing toy that way, and I found a missing remote control!  (These items had been missing several WEEKS when they were finally found.)  He is still a complete joy and such a happy baby!  His shirt today says it ALL!    Even if the sheer number of doctor appointments has been a bit overwhelming these past few weeks! 

Finn - 17 months - MY WAY!

Britt and I were going through old pictures and videos on our phones over the weekend, and we watched a few videos from our time in the NICU at Mercy.  It still seems surreal – to both of us – that THAT was our lives for over 3 months, and that the tiny struggling baby in those films is OUR son.  It doesn’t seem real.  Or that it happened to us.  But, it was our Finn!  As strong and crazy as he is now, he started out so tiny and frail.  God’s work blows us away.  To HIM be the Glory!

In the meantime, Finn had his first evaluation with the pediatric pulmonologist (physician who specializes in treating diseases of the lungs) yesterday.  We were recommended to see one after our stay in the hospital, and this Doctor came HIGHLY recommended.  While we didn’t really learn much from the visit yesterday, we are glad we went.  They did a chest X-ray (I think this was probably the 20^th one he has had in 17 months), a full exam, and tried to do a sweat test.  This is a test where they stimulate muscles, then collect sweat to evaluate the chemical content in it.  Unfortunately after the (long) procedure, Finn didn’t sweat enough to test anything.  Traditionally, this test is used to check for Cystic Fibrosis, but we know Finn doesn’t have this disease.  So, we assume (no one told us) they do this test routinely just to see what the chemical make-up of the child’s sweat is.  I have another preemie mom friend whose son sees this same physician, and she said they did it with her son as well, and he does not have CF.  So, we were told there is residual evidence of the RSV in his lungs, and to come back in 6 weeks for a follow up and to attempt the sweat test again.  And for Finn to drink LOTS of water before he comes!

(CF sidebar: The girls' father does have CF.  He has a rarer mutation that only slightly effected his lungs, but the end result is what caused us to have to do IVF/ICSI to conceive Emma and Lara.  Before we went ahead with fertility treatments, I was tested to see if I was a carrier since he had the disease, and I am not.  (Both parents have to be carriers in order for the offspring to inherit the disease.)  Each girl has a 25% chance of being a carrier.)

TOMORROW, Finn gets his first HAIRCUT!  I’m sure I will cry.  My last baby’s first haircut.  WOW.  (Emma was over 2 before I cut hers (because she was bald before that), Lara was 11 months,  and Jake was 8 MONTHS at his first haircut!  He had SO MUCH hair!)  I can’t wait to share pictures!