Tuesday, May 29, 2012

Finn's Story

Recently, the representative we worked with while at Mercy from the Central Oklahoma Chapter of the March of Dimes asked parents to submit their stories of premature birth to be included in a book they are working on called "Journals of Hope."  The purpose of this project is to be able to help support families who are just starting a journey they never dreamed they would be on.  To give them hope in a scary, confusing time.  We were approached about the project, and of course we wanted to participate!  It has taken a lot more time than I thought it would to organize my thoughts, write them out, polish the product, and let it fly.  Not to mention the emotions that it brought up while I was working on it - I had to just put it away several times - it is OVERWHELMING what we have overcome this past year.  Along with that, I have to acknowledge that I shared the burden of this project with my husband.  With out the suggestions/prodding/editing/proofreading/laundry support of my amazing husband, I would have never seen this through to completion.  I buckled down over this past holiday weekend to finish it up and put the final touches on it, and I want to share it with you here.  It's a mere 5,300 words.  Sit back and enjoy the "short" version of Finn's Story...

Journals of Hope
NICU Family Support Program

We are the Six Dream Weavers – This is Our Story

My name is Betsey, and my son was born 14 weeks premature.  I found out I was pregnant on May 24, 2011.  At age 36, I was already the mother of 3 children, and was not contemplating a fourth.  I had 9 year old twin girls, Emma and Lara (who worn born in 2002 at 38 weeks gestation, weighing 6 pounds each - came home with me a few days later) and a 4 year old son, Jacob (born in 2007 at 37 weeks weighing slightly under 9 pounds).  My husband, Britt, and I both worked full time, and had a very busy life with our 3 kids, and thought our family was complete.  It took me 2 days to get up the nerve to break the news to him!  Although we were already covering our newest little addition with prayer, we had no idea about the complexity of the journey we were about to embark upon.  I was due with my fourth child on January 6, 2012.  

Both of my previous pregnancies were very routine – even the “high risk” multiple pregnancy.  I had some PIH (pregnancy induced hypertension) issues late term that led to a C-section a few days earlier than scheduled with the first, and we moved my C-section date up for my son by a few days based on his size, but other than that, two pretty unremarkable pregnancies.  That all changed with this one.  I started having unexplained bleeding at 9 weeks, a slight amniotic fluid leak at 15 weeks, and both issues seemed to continue and get worse during the 2nd trimester.  We were praying BOLD prayers with our friends, family, and care givers to save this precious life and to give us all the wisdom to make the right decisions.  Eventually, these complications led to pelvic rest, then restricted activity, and finally home bed rest.  On September 14, 2011, I walked out of my house for the last time as a mother of 3.  That evening, I had another (my 4th) severe bleeding event that landed me in our local hospital for 2 days (after being in and out of labor and delivery a few times in the past weeks), after which I was transferred to a regional hospital with maternal and fetal medicine specialists, as well as a Level III neonatal intensive care unit – Mercy Health Center in Oklahoma City, OK - for total hospital bed rest.  I was ready to settle in for the long haul.  I was only 23 weeks pregnant when this happened.  My baby had a LOT of growing and developing to do!  My prayer warriors kicked in to overdrive to beg for God’s protection over this situation.

Fast forward a few weeks.  It was a Wednesday.  October 5.  3 days before my 37th birthday.  I had run into the “bed rest wall” that morning and was having a huge pity party for myself.  I was incredibly weepy that day -- Just couldn’t stop crying. I was sad. Sad because I missed my kids. Sad because I felt “trapped” and “stuck.” Sad because I missed my husband. And sad because I missed my home town of Stillwater – 70 miles away. Not really anything specific, and I had TONS of visitors, but it just wasn’t the same.  Shortly after lunch, I had started to feel better. I had gotten a few pep talks from my husband, and a few excellent messages from a fellow twin mom who endured 63 days of hospital bed rest while waiting on her twin girls, and a beautiful bouquet of flowers from my most prominent cheerleader outside of my family. And I knew people were praying for me, for the baby, and for my family.  I had been in prayer all day, too, I just needed God to help me overcome the stronghold Satan had on us that day.  I had given myself a few pep talks as well, and I was looking forward to Skyping (is that a verb?) with friends that night with my newly discovered favorite technology! Things were looking up! I knew I could do this!  At 7:00pm, I started my Skype session with my friends.  About  30 or 40 minutes later, it happened.  Although we weren’t sure what happened at the time, my water broke, but along with that was a large amount of blood.  Thankfully, my husband was smarter than I was and headed down to see me as soon as he could – after I had said all would be fine and insisted he stay home.  But after several hours of prayer, careful monitoring, IV fluids and calls to my specialist, the time had come.  

At 11:01, my nurse came in, sat on the edge of my bed, put her hand on my knee and said, “Sweetheart, we’re going to have a baby.” I nodded as though I understood, even though I didn’t really. And then she said, “Like RIGHT NOW!” And then I saw the panic. And within seconds, 4 or 5 other people were in my room. I heard the charge nurse on the phone saying we would have a baby by 11:20. People were putting the compression boots back on my legs, taking off my street clothes and putting me in a gown, putting warmed IV fluid on the pole at a much faster rate, taking my blood pressure, shaving me in preparation for surgery, a NICU nurse was introducing herself, and so on and so on and so on!   With fear in my eyes, I told my husband to “Call my mom!” and to “PRAY!” Next thing I knew, I was being wheeled down the hall to the operating room. As we crossed the threshold, a nurse called out “Time in, 11:09.” Wow. 8 minutes from the time I was told I would be giving birth.

Finn Ricker Weaver was joining us soon!  He was born on Wednesday, October 5, 2011 at 11:48pm. He weighed in at a tiny 1 pound and 14 ounces, and was 13 inches long. His arrival 14 weeks before his due date was a bit dramatic, and even a bit traumatic, but he defied the odds by surviving and then thriving in the NICU at Mercy.  Praising God for his mercies and his miracles!

You are the God who performs miracles; you display your power among the peoples. Psalm 77:14

“They” (NICU doctors, nurses, staff and graduate families) often say the first 24-48 hours of your NICU stay are somewhat of a “Honeymoon” period – things seem to be going well or better than expected.  But, the roller coaster ride has to begin at some point, and it always does.  We were told that Finn was doing very well initially for a baby of his size and gestational age.  The first two interventions for Finn (besides IV fluids for nutrition) were the ventilator for respiration (which at this point was at very low settings for a baby of his size!), and 3 banks of the blue photo therapy lights used to fight the bilirubin levels in the blood that cause jaundice.  Both very typical for micro-preemies.  (Heck- all my full term kids had jaundice issues of some level!)  The next few days were pretty uneventful as far as the health of our baby.  We knew he had a long row to hoe, and we would be in the NICU for several months, so this was just the beginning of our ride.  The hardest thing for us during those early days was the 4th day after he was born, when I was discharged, and we had to leave the hospital without our tiny son.  Absolutely heartbreaking.

That first week consisted of lots of IV’s, lots of photo-therapy lights, weight loss, tiny weight gain, and finally, on day six, the chance to HOLD MY SON for the very first time!  I was allowed to “Kangaroo” (a method of caring for a premature baby where the baby is held against a parent's bare chest – skin to skin) with Finn for almost an entire hour that first time!  Truly a healing moment for both of us!  I also learned this week that sometimes, when you are past an obstacle (Jaundice – they removed the lights on day 6), sometimes it has to be re-visited (the lights were back on day 11). Let the roller coaster begin!

At one week old, Finn received his first (there would be six before we were discharged) blood transfusion.  This was an emotional moment for us.  We had never known anyone who had received a blood transfusion, and it brought up a lot of questions and fears.  Ultimately, we knew what was best for Finn, but there was still those nagging thoughts – Is it safe? What if he rejects it? Why does he need blood?  We learned that it is completely safe, and he needed blood because he was using it faster than he was producing it just trying to grow, plus all the tests he was having run on him – including a heel prick for blood gas levels every few hours!  It was also this day that we learned he was fighting off his first infection, and was being given broad spectrum antibiotics.  All of these things compounded to make me a very nervous mom.  Once again, we turned to our faith and knew that God would provide for our tiny baby.

The second week was rocky, too.  While I was able to hold him more, Dad got his first opportunity to Kangaroo, he started feeding on tiny amounts of my pumped breast milk, and he had gained weight back up to his birth weight, he also was experiencing more respiratory distress.  He had to be switched from a traditional ventilator to a more invasive, LOUDER oscillator (which keeps the lungs open with constant pressure, and vibrates at a very high rate).  This was distressing because it was more support (going in the wrong direction here), we were no longer able to hold our baby, and the machine literally SHAKES the baby.  He looked like he was vibrating all the time!  But, he immediately started improving on this equipment.  During this time, he was also sedated lightly, as well.  While I didn’t know exactly what to expect from a newborn preemie, we could tell sometimes that he was acting “drugged up” a bit.  

The LORD is my strength and my shield; my heart trusts in him, and he helps me. My heart leaps for joy, and with my song I praise him. Psalm 28:&7

The next few weeks were filled with days of sitting by Finn’s bedside, pumping breast milk endlessly, staying with friends while missing my family over an hour away, and learning our new normal.  Finn was a fighter from the start, and he was working so hard to get bigger and better.  He continued to tolerate his feedings through the NG tube, stayed under the bili-lights for another week, and made respiratory progress every day.  When he had been on the oscillator about 5 days, he hit a plateau of sorts and was not making any forward progress in the breathing department.  That’s when we were asked the hardest question by far of our NICU journey.  Our Neonatologist wanted to start Finn on some controversial steroids to help his lungs.  We were told that the long-term effects of these were unknown, but that short term there was a VERY HIGH chance of them helping Finn turn this corner.  After much prayer, consultation, and crying, we decided that the short term benefits outweighed the long term risks.  We knew this was part of God’s plan for Finn’s life, and we wanted Finn to get better and be able to be the man God wants him to be.  And, thankfully, the drugs worked and Finn continued to improve – he transitioned off the oscillator back to a traditional ventilator after 2 (of the longest) weeks.  Then, we FINALLY got to hold him again!  

By one month old, he weighed 2 pounds 11 ounces.  He was finishing up a round of antibiotics for the staph and e.coli they had found in his eyes and chest tube.  He had been off the oscillator for 10 days and off the steroids for a week, and was making positive progress in the respiratory department.  He was up to 18cc’s of breast milk every 3 hours through his NG tube and tolerating them well – working towards being off all IV fluids and supplementary lipids.  He was still on fentanyl for sedation, but was being slowly weaned off. And he had his first eye exam from the ophthalmologist - which he passed beautifully!  We had fallen in to a good pattern, and Finn was growing well.  Our next hurdle was to remove the PICC (peripherally inserted central catheter for intravenous access for a prolonged period of time) line from his arm and eliminate that potential source of infection.  We need him to grow, but to also avoid infection and other illness.  Two steps forward, one step back.  But, slow and steady wins the race, right?

 Trust in the Lord with all your heart and lean not on your own understanding Proverbs 3:5

November brought us lots of ups and downs as to be expected.  Early in the month, he was doing SO WELL, then he started trending downward and needed his fourth blood transfusion, medication to pull fluid off his lungs, and his ventilator settings were going in the wrong direction for a couple of days.  So distressing!  Then, he bounced back and had a GREAT few days!  At 6 weeks old, he was taken off all pumps and medications, the PICC line was pulled, and he had no IV’s in him at all!  He was de-sat’ing less and less during his hands on times, and he was making progress in the right direction – even figured out how to suck his thumb!  By the end of the month, there were even whispers that he might be home for Christmas – a mere 12 days before his due date!  We were looking forward to celebrating the birth of our Savior by bringing home our sweet son!  He was making tiny steps forward every day.  Creeping closer and closer to being off the respirator and on to CPAP – a step in the right direction for sure! As soon as he could be without the chest tube, we could start trying to nipple some of his feedings.  By this point in our journey, I was just weary.  Missing home and my family.  Wanting time to go more quickly.  Wanting Finn to improve faster.  Wanting us to all be home and together and life back to normal.  Everyone kept telling me I look good, so I was either good at faking it, or the pace and stress I was keeping up under was making me look better to others!  I don’t know, but I’ll take the complements.  Since Finn was born, I had not spent more than 4 nights in a row in the same bed.  We had been in the NICU for 7 weeks.

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6-7

Week 8 was a big one!  Not only were we celebrating our THIRD holiday in the NICU (my birthday, Halloween, and now Thanksgiving), MY BABY DIDN’T HAVE A TUBE DOWN HIS THROAT ANYMORE!!!!!   He could swallow and cough and CRY now.   Soon, we would be bottle feeding!  Also this week, he started wearing real clothes!  Up to this point, he was in a diaper and was swaddled.  I was not aware of this development coming, so I was truly shocked!  I found out later that the requirements were 3 and a half pounds, but when Finn hit that marker, he still had a rigid tube down his throat.  So, for him, it was 3 and a half pounds, AND the tube was gone!   The month ended with him being “graduated” from his high-tech incubator “Giraffe” omni-bed to an open-air crib in his room.  This seemed much less scary for all of us, but he seemed so SMALL in there!  Especially since he was still on the CPAP for breathing and was so wrapped up all the time.  Soon after he moved to his open crib, we learned that the settings on his breathing machine (called a SiPap) were no longer initiating breathes for him - he was doing that ALL on his own!  SO CLOSE to being off the machine and on to a nasal cannula!  He also got his 5th blood transfusion at the end of the month.  

The beginning of December brought a whirlwind of excitement.  It seemed like things were doing a two-step (one step forward, two steps back) for such a long time, then everything was just stagnant with nothing happening, then started moving forward QUICKLY!  We were really looking good for the “home by Christmas” dream we had.  Finn was doing very well, hitting milestones, and getting bigger and cuter every day!  One of my favorite NICU moments came early in December when I had stayed late and got to help the nurses and RT give my little man a “spa bath.”  Just under 4 pounds, he was totally bare for the experience except for the NG feeding tube, and the RT was holding a hose to blow air by his nose to keep his O2 levels up, and she used another of her tools to make bubbles in the pan they were using to bathe him.  I got to help, and another nurse took pictures, and it was truly a memory I will cherish forever! 

 “Therefore I tell you, do not worry about your life, what you will eat or drink; or about your body, what you will wear. Is not life more important than food, and the body more important than clothes?” Matthew 6:25

I missed a few days early in the month because I was back at home for my surgery – a tubal ligation.  We were definitely too old and too worn out emotionally to do this again!  I made sure I held Finn extra the 2 days before I had to go home for several days.  The day after my surgery, I got the call that Finn was no longer on CPAP – what a GREAT way to make my recovery go faster!  He was now just on the nasal cannula, and would soon be able to attempt bottle feeding!  We made a quick trip down to see him since this was HUGE and we could finally see his whole face.  Good news can sure speed up recovery!  

He turned 2 months old on December 5 and weighed in at 4 pounds six ounces, and had started taking some of his feeds by bottle.  The other thing that made getting off CPAP such a huge milestone for us was that now our other kids and family members could HOLD THE BABY!  They had been asking for so very long!  Up to this point, Britt and I were the only ones to have held him.  Early in December, that was quickly remedied!  Big Brother Jake was first, followed by big sisters Emma and Lara as well as extended family.  Once Finn got his tachypnea (fast breathing) under control, he took to the bottle like a champ!  The first few days he would tire easily, but by the 4th or 5th day, he was really doing GREAT, and was up to about 82% bottle feeds!  The staff was very impressed by this as a baby with his much oxygen support typically has some aversions to nipple feeding.  On his month-day, we also started his first round of immunizations.  I didn’t know they would keep those on a “traditional” schedule, but it made me feel better knowing he was protected.  But, as the NICU ride goes, the bottom soon dropped out on us again.  The next week, he was struggling – couldn’t keep his O2 levels up, super sleepy (maybe from working so hard to bottle feed), and generally not the hard working baby we had all come to know.  They told me they were going to withhold the bottle for an ENTIRE WEEK to get him back up to par.  There went my Christmas wish.

The morning after I got this crushing news, I was greeted at Finn’s bedside by 4 staff members; all declaring my son had just had the poop of the century in the NICU.  He got it all over everything including the walls, the bed, and the VapoTherm machine!  And the best part?  After this display, he felt SO MUCH better – back to the baby from a few days ago who was eager to please!  We got to try a bottle again that morning – and never looked back!  My Christmas dreams had been revived!

The thought of actually bringing my tiny baby home started to become a reality at this point.  But, a scary reality.  While I desperately wanted Finn home, it’s scary to leave the only one he’s ever known.  It’s like his birth, all over again.  Leaving a home that is safe, comfortable, reliable, and KNOWN to go to another place, that while it is safe, comfortable and reliable, it is a GREAT unknown.  A whole new set of circumstances and lessons to be learned.  A new family dynamic.  A new life that God has entrusted US with – we are so unworthy of all his blessings!  About this time, we seemed to hit another Finn “plateau” – which he was now famous for.  His numbers were trending downward again, so it was time for his 6th (and FINAL, thankfully) blood transfusion.  During the blood transfusion, they hold his feeds, so not only did he get an IV for the blood, but also for IV nutrition as well.  While he looked kind of cute with a hep lock in each hand poking out over his blanket, I knew it wasn’t comfortable for him.  Typically after a transfusion, Finn perks right up and takes off in the right direction.  But this one had left him pretty sluggish.  He was having trouble taking all of his feeds by bottle, he was lethargic, and was relying heavily on his oxygen support.  All these things were not getting us home any time soon.  He was no worse, but definitely not better either.  And we weren’t moving forward at this point.  It really looked like Christmas would be a family of 5 affair as Number 6 stayed in the NICU.  Time to get back on our knees and get our prayer partners back in full gear.  We needed grace in this situation.

At 10 weeks in the NICU, we had been there long enough that some of the other parents of preemies feel like friends, and the staff was like family.  We couldn’t walk down the hall without a handful of “Hellos” and “How’s Finn?” greetings passing my way.  Although it was a comforting feeling, it was still a bit surreal.  WHY were we there in the first place – let alone long enough to feel that way about the people we were encountering on a daily basis?  But all of the hard work, diligence and prayers were paying off.  Finn was on another upswing!  He hit 5 pounds 10 days before Christmas.   We had a plan to get him over the plateau – which included discontinuing the diuretics (which he was not responding to properly), an echo cardiogram (which came back clear), and hold bottle feedings for 48 hours to insure he wasn’t aspirating when he fed – which also gave him time to rest.  Oh – and the doctor ordered for his parents to be patient.  Easier said than done!  We were told due to these setbacks, Finn would not be home for Christmas.  But we were thankful for what we had.  The doctor had told us the day before that 9 out of 10 babies with his exact circumstances (26 week gestation birth, under 2 pound birth weight, 7 weeks on a ventilator, etc.) would not be faring as well as he had. 

But, 2 days was all he needed!  We had once again seen God show off through our son.  Back to bottle feeding, back to being his perky self.  Still weaning his oxygen support ever so very slowly.  Just 4 days after that last, fateful blood transfusion, Finn moved to the “A quad!”  This is where the less critical babies in the unit stay.  This was another huge milestone.  You know your baby is going home soon when you move over there where they keep the “growers and feeders.”  They took his feeding tube out on the 20th, and that was his last invasive treatment. That’s where we were at this point, just growing and mastering bottle feeding!    He was now just on monitors and oxygen.  We celebrated Christmas at home on Christmas morning, and then had a lunch of lunchables and capri sun in the van as we headed to see our baby!  Best. Christmas. EVER!  First picture of all 4 of my kids in the same place at the same time.  5 pounds 10 ounces of Awesome.  Growing and feeding just like he should be.  Just waiting to come home.  They were working through his check list to come home – including his hearing test, eye tests, car seat challenge, and the final obstacle of an MRI.  And we were working on ours – taking our last NICU class and getting CPR class taken care of, too.  

…the angel said to her, “Do not be afraid, Mary; you have found favor with God. You will conceive and give birth to a son, and you are to call him Jesus.  He will be great and will be called the Son of the Most High. The Lord God will give him the throne of his father David, and he will reign over Jacob’s descendants forever; his kingdom will never end.” Luke 1:30-33

On Tuesday, December 27, 2011, my husband and I got to “room in” with our son in the NICU for our first overnight with him, and we drive him home to our house on December 28, 2011 – 9 days before his original due date of January 6, 2012.  

 In peace I will lie down and sleep, for you alone, LORD, make me dwell in safety. Psalm 4:8

The first few days (and weeks!) at home were a true test of our parenting skills, patience, and love.  Finn came home on a heart/apnea monitor as well as supplemental oxygen, so we had lots of “stuff” to bring with us.  We had some equipment issues the first few days that took some working out, we had some insurance issues that were making it impossible to get the Synagis (RSV preventative) shots scheduled, and my husband had to go back to work, but my older three kids still had a week off school for the holidays!  WHEW!  And, we were trying to keep Finn on the every 3 hour schedule he had been on in the NICU.  It was a challenge keeping every one fed, entertained, clean and dry - and to keep reminding them not to step on, trip over, kink or otherwise disturb all the cords and wires crisscrossing our house! It was a crazy ride, but we made it!  On his due date, had been home for 10 days.  We are all still adjusting, but we couldn’t help but celebrate this milestone.  We are so happy to just be a family, all under one roof and looking forward to a much calmer 2012.  

By 4 months old, Finn weighed 8 pounds, 1 ounce and was 20 inches long.  We were so thankful for what God had done in the life of our son so far, and for the future we could finally begin to imagine.  He was still on oxygen and still on the monitor 24 hours a day – both of which were becoming tiresome at this point.  We had started to wean the amount of oxygen and we were getting close to being done with it, but we still had a few weeks to go.  He was still growing strong and doing all the things he should be done.

Shortly after his 5th month day in March, Finn was struggling through a slight cold, and with his congestion and the nasal cannula in his nostrils, he was having a hard time breathing.  We called out pediatrician, and got the go ahead to try a room air test!  We were so thrilled!  It was so great to finally be able to see Finn’s whole face without tender grips and a tube up his nose!  He did great, and while we had him on oxygen at night for a few more days, it felt so good to be done with one set of cords and wires!  We were still on the heart /apnea monitor at this point, but soon moved to only having it on at night. Our prayers were being answered!

Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they? Matthew 6:26

At his 6 month pediatrician’s visit, we were finally cleared to stop using the monitor.  This was truly an emotional moment.  Our baby was FREE!  Thank you Jesus, for all of your continued blessings over our son!   We could be a normal family!  He was growing bigger, was given a clean bill of health, and we were finally getting out of RSV/flu season!  We did have one more hurdle to jump, as he needed to have surgery to repair the left inguinal hernia he had.  We got that scheduled for a few weeks later – at a different hospital an hour away from home again.  All went very well with his surgery and his recovery made him a whole new boy!  The child development specialist that comes to see him every 2 weeks was really amazed at how much better he felt and acted after that surgery!  Now, that he was doing so well, we could start to get him out of the house a little bit.  His first encounter with the public was on Easter Sunday when we took him to church for the very first time.

 Let the heavens rejoice, let the earth be glad; let them say among the nations, “The LORD reigns!” 1 Chronicles 16:13

As I write this, Finn is almost 8 months old.  The last couple of months have been so great.  He is a wonderful baby to be around – when he’s happy!  We also suffered through a terrible case of colic, and while he is past that, he is still my fussiest baby!  But, his smiles, coos, laughs and just the miracle of his life make all the struggles so very worth it!  We are so lucky God chose us to be his family, and we can’t wait to hear how he changes the world in the future!  

We hope that sharing our story with you will help you on your journey.  We also want to thank you for letting us tell our story and letting us reach out to you.  We have been able to celebrate victories and grieve for sorrows of several families since we began our journey.  It is truly a blessing to be able to share this experience with others. “Rejoice with those who rejoice; mourn with those who mourn.”  Romans 12:15

Friday, May 25, 2012

Memorial Day is for Memories

I, once again, find myself reflecting on this past year.  1 year ago YESTERDAY, I was totally flabbergasted and stunned when I had a nagging suspicion, snuck out to Walgreens, hid in a bathroom stall, and found out I was pregnant.  A secret I kept for a couple of days so I could shock a few years off my husband’s life as we left for our “Mystery Honeymoon”  a couple of days later.  Never in my wildest dreams could I have ever imagined the journey this year would take me on.  The prayers we have prayed, people we have met, the lessons we have learned, the lives that have been touched and changed forever.  It is simply MIND BOGGLING to look back on it, and I think at this point I can say this was a “once in a lifetime” season of my life.  There may not be another time in my life that will bring about so much change and growth in a 12 (or 14) month period of time.  I won’t say it can never happen; it’s just not very likely!

I also find myself remembering my tenacious brother.  Did he send us this angel baby to help soften the blow of missing him?  Did he know we all needed something to focus on to not get stuck in the darkness of missing his light?  Did he want us to stretch and grow and learn to be able to help others on a similar path?  I may never know all of the answers to these questions (and about 1,000 others I can’t wait to talk to Jesus about!), but I do know having Finn in my life makes me miss Brian a little less.  It’s like I have a tiny piece of him here with me to love and hold every day.  I still cringe at the thought that Finn will never know his Uncle Brian (and vice versa), but I take comfort in the fact that ONE DAY they will be reunited.

In the meantime, things are starting to slow down a tiny bit around here.  Life with ten year old twin girls has been pretty fun so far!  We have finished up volleyball season for Emma, dance recital for both girls is next week, school is out for summer (I now have 2 5th graders and a Kindergartner!), and we are about 2/3 of the way through T-ball season for Jake.  We have had a tour of the new school the kids will be going to next year, Jake got to go to Texas with Nana and Grandpa for his cousin’s dance recital, Emma and Lara hosted a birthday sleepover for a few girlfriends, Finn got to be “show and tell” for 2 of the 4th grade classrooms, Emma and Lara learned about the new room and programming they are promoting to at church, and we had the last day of school.   

We are much closer to being unpacked at our new house, and I have moved furniture at work, too and have a desk, credenza and hutch that fit my space MUCH better now.  I hope to decorate it this weekend!  Nothing like cramming it ALL IN in a 2 week time period!  But, now things slow down a bit.  We got to experience a little bit of summer fun on Wednesday when the big kids got out of school.  I did not have a babysitter that day, so I took the day off work to be with Finn, then after the kids got out of school (at 1:00 – they only had a half day) we went bowling, and for ice cream.  SUCH a fun way to start the summer off!  I am a little sad that the girls leave today for a few days with their other dad, but it is always refreshing to have the boys by themselves to see how that relationship is growing. And speaking of Finn – At 7 months, 2 weeks and 6 days old (4 months, 2 weeks and 5 days adjusted)  he has passed 14 pounds, can roll over front to back (when he feels like it), drinks 6 oz bottles, sleeps through the night, loves to “talk” and sing, likes to stand up and take steps, and his favorite song is still “Moves Like Jagger.”  His Child Development Specialist from SoonerStart is very impressed!  He has progressed in leaps and bounds since his surgery!  We are so proud of him and SO in love!

Tuesday, May 15, 2012

My Mother's Day Miracle

This past Sunday was my first Mother's Day as a mother of four.  It was my first Mother's Day with 3 kids in public school - and all the fun crafts that brings with it.  And it was my first Mother's Day where I was truly humbled by the gifts God has given me in these incredible children, and how this day could have turned out so very differently.  After the loss my family has worked through this past year, I have a whole new respect for people who miss their mothers on Mother's Day, and for mothers who miss their babies - whether they never got to hold them, only held them for a short time, or held them for a lifetime that was just too short.  It was an emotional day, and I am so grateful to have shared it with my nuclear family, my extended family, and my church family.

I got my first cards on Friday, and one in the mail on Saturday, but on Sunday, I got the mother (get it?) lode!  When you have 4 kids and a loving husband, that's a lot of Hallmark greetings!  And I loved every single one of them!  My precious girls even put a one dollar bill in each of the ones they gave me - seeing as how they like to get dollars in their cards, I guess they thought I would, too! (I gave them back - they were grateful!)  Jake had lots of fun gifts from school, and the girls wrote me a song and made me a video.  Finn drooled.  And spit up on me.  But, he also got to experience a very memorable moment at church Sunday morning as it was Child Dedication day at LifeChurch.tv Stillwater.  We were one of over 30 families dedicating a child this weekend - one of 12 at the 10:00 service alone!  The picture at the opening of this post is from a week ago and 7 month old Finn is looking towards a photo of him at just a few hours old.  The picture was my husband's idea, and we love the way it turned out.  It was used for the slideshow presented at church of all the babies being dedicated, and it looked great -- it really captures our journey.  We were lucky enough to share this amazing experience with some sweet friends, too.  Each family is prayed over by a staff member, and we hit the jackpot! As you (may or may not) know, Britt and I volunteer in various capacities 3-4 weekends a month with the Host Team at our church.  We were blessed to be prayed over by the Host Team coordinator from our staff.  She is AMAZING!  We have grown very close to her and her family over the past couple of years, and it really showed during this special prayer.  She had warned us as we all walked up on stage that she might cry during it.  I don't think she made it through the "Dear God," before she was bawling - and Britt and I were close on her heels with the tears flowing.  After the group prayer, Finn was loved on by our entire congregation as our Campus Pastor took Finn up on the platform for some "stage time."  He talked about how Finn has come from a 1 pound 14 ounce miracle to the 13 pound blessing he is today.  He said there was probably not a happier mother in the room that day than Finn's.  He was so right.  Happy.  Honored.  Humbled.

After church we had a fabulous lunch out with my Mom and Dad, and I got to surprise her with a memorable Mother's Day present, as well.  Using Blog2Print, I made a hardbound book of all the posts related to my brother's death, funeral, and the recovery we went through.  I was very happy with the final product, and happy to be able to present that to her this weekend. I have another Pinterest project in the  works for her, but I am waiting on something to arrive in my mailbox before I can complete it.  I hope to be able to share that soon!

For Mother's Day after Jake was born, I got a James Avery chain with a gorgeous butterfly charm attached.  The butterfly is composed of 2 hearts, and the body is the intersection of the two.  Britt told me at the time the hearts represented each of us, and the union was Jake.  I have treasured that necklace for the past 5 years, and worn it almost everyday!  This year, I think he topped even that.  If you follow me on Twitter or Facebook you know that I won a raffle a week or so ago for the jewelry shop at Peek-a-boo ICU.  My amazing husband asked if he could use the gift code I received to make me a journey bracelet commemorating our time with Finn in the NICU at Mercy.  I was a bit reluctant at first - really just loving to shop and wanting to pick our my own beads - but based on my experiences with him, I knew he would do an EXCELLENT job, and I knew it would mean a lot to him to be able to do this for me.  So, I gave him the code and he set to shopping.  He had to pick out the beads that each have a special meaning about the obstacles, hurdles, triumphs, and setbacks we endured as a family.  He was pleasantly surprised when the package arrived before this weekend, and he was so excited about it, he gave it to me on Friday night!  It is PERFECT!

Each bead has a special meaning, and Britt chose perfect ones!  There are many more in each category - some that apply to us and some that don't - but he picked ones he knew we would both appreciate, and ones that applied specifically to Finn.  We made a similar "Journey Bracelet" with the March of Dimes while we were in the NICU, but it was much more elementary - on a black string using plastic beads.  While I cherish that token, this is a true work of art!

Starting with the purple dangling heart and moving counter-clockwise:

  • The Preemie Purple Pendant is in  honor of the million babies born too soon this year and the 12 million more struggling to survive
  • Imprints on the Heart- Preemie Footprint: Preemie Power Peekaboo Orange  “There are two ways to live your life. One is as though nothing is a miracle. The other is as if everything is.” ~Albert Einstein 
  •  Micro-Preemie Miracle Bead: Turquoise with sparkling copper swirl 925 murano bead represents the micro-preemie. The term micro-preemie usually refers to a premature baby who is less than 800 grams or 26 weeks at birth. This bead is square in shape with each side symbolizing an aspect of awareness and inspiration; angelic, diabolic, human, and divine.
    Our awareness can be that point bouncing between these aspects housed within each side of our experiences- dark moments coupled with those of light, the ups and downs in the micro-preemie journey, and the physical and spiritual aspects of this journey.
    These kinds of attributes cause the square symbol to be an anchor; Keeping us focused and grounded. The square shape represents balance, stability, dependability and direction.
    Turquoise is one of the oldest protection amulets. It represents strength, protection from harm, psychic sensitivity and connection to the spirit world. Turquoise is known for its healing properties. When paired with copper the power of turquoise increases and there is an enhanced energy field.
    Copper is considered a solar emblem with radiant features of the sun. The symbolic meaning of copper deals with bright ideas, fresh perspectives, and incorporating these new thoughts with our existing framework.  By combining the old with the new we find our lives expanded and new directions to our path.
  • The Elephant: Strength - The elephant is a symbol of strength, honor, stability, and patience. The protective, nurturing, and general nature of the elephant represents energy and power.  The elephant has long been regarded as a symbol of divine wisdom. The ability of elephants to aid in battle led to their additional symbolic meaning of triumph and victory.
  • Blood Transfusion -  (Red with white circles) Premature infants often are anemic, which means they don't have enough red blood cells. Normally, the baby stores iron during the later months of pregnancy and uses it late in pregnancy and after birth to make red blood cells. Infants born too soon may not have had enough time to store iron. Preemies may also become anemic from blood loss before or during delivery, a mismatch of the baby’s and mother’s blood types, the need to take frequent blood samples to preform necessary laboratory tests, or an inability to make enough red blood cells to keep up with the preemie baby’s rapid growth rate. This bead represents the struggles with anemia, the constant and sometimes continues blood draws and the need for blood transfusions.
  • Infinite Courage - “Sometimes the biggest act of courage is a small one.”
  • Holiday Bead - (Red with white swirls) Spending the holidays in the NICU can be very difficult both emotionally and physically. This bead represents the time spent with your preemie as you celebrate Christmas together for the very first time.
  • Heart-Mother's Love - ~Nobody will ever know the strength of my love for you. After all, you are the only one who knows what my heart sounds like from the inside~
  • BPD and Oxygen bead - (Royal blue with white swirls) Bronchopulmonary dysplasia (BPD) is a chronic lung condition caused by airway inflammation. It affects infants who were on a ventilator for long periods of time, and can cause difficulty breathing and low blood oxygen levels. BPD affects as many as 62% of babies born before 26 weeks, but only 3% of those born between 30 and 32 weeks. Infants with BPD may need extra oxygen until the condition subsides. This bead is to help raise awareness of chronic lung disease in preemies and the struggle to overcome and persevere
  • The Kangaroo: Bonding - The kangaroo is a symbol of intuitive action and human connections. The kangaroo represents the importance of parent-child bonding in the earliest stages of life.
  • Preemie Power Charm: (orange) Orange is our Preemie Power color! Orange represents strength, and determination. Orange is a powerful color. It is one of the healing colors. Orange means vitality and endurance. Curiosity is a driving characteristic of orange and with it comes exploration of new things. Orange can bring about the willingness to embrace new ideas and knowledge while exploring paths not taken.  Orange is used to promote personal power and is used to boost self-esteem in those who feel overwhelmed in unfamiliar and new situations. Wearing orange during times of stress or shock can help to balance emotions and bring a sense of personal peace and a sense of empowerment. The emotions orange spark seem to really relate to the journey a preemie parent must take when forced to start parenthood in the NICU.  
  • Home Sweet Home - "Only as high as I reach can I grow, only as far as I seek can I go, only as deep as I look can I see, only as much as I dream can I be." ~ Karen Ravn
  • Hugs and Kisses - (this is separated by the clasp on mine)  These two charms come as a pair! The silver hugs charm is highlighted with a preemie purple stone and accented with gold tones. The silver kisses charm also has highlights of gold and represents the everlasting love of a preemie.  ~A preemie is a tiny soul that speaks with its eyes, kisses with a gaze, and hugs your heart tighter than you ever thought possible~
  • Baby Boy
  • 26 Weeker - (Tiffany Blue) ~Twenty Six Weeks~ Approximately 80% of babies born in the 26th week of pregnancy will survive. Babies born at this gestation typically weigh less than 800 grams and are termed micro-preemies. At 26 weeks, the eyelids are now open, the eyebrows and eyelashes are fully formed, along with fingernails and toenails. The footprints and fingerprints have begun to develop but their tiny feet will often be smooth to touch with very little creases.  Although the 26 weeker can hear your voice, loud noises are often too much for their underdeveloped neurological system and they will startle at loud noises. The lungs have started to develop alveoli, the air sacs that allow gas exchange (breathing!)  and their lung walls have begun to secret surfactant; a surface-activated fat on their lungs necessary for breathing – however, the lungs of the baby born at 26 weeks remain underdeveloped making them susceptible to injury and may be dependent on respiratory support in order to survive. A long and sometimes complicated NICU stay awaits the preemie born at 26 weeks gestation.
  •  The Lion: Courage - It takes a lot of courage to be a NICU baby and being brave is what they do best! Having royal power, regal strength and noble courage. 
  • Jaundice Bead - (yellow) Up to 90% of newborns will develop some degree of jaundice within the first week of life, and almost all premature babies will begin to show signs during the first few days. Bilirubin is the by-product of the body’s recycling of red blood cells. As the excess red blood in the infant’s circulation begin to breakdown in the first few days after birth, they release what is called bilirubin, which causes the yellowish coloring of the skin and eyes. Bilirubin is normally processed by the liver and excreted in the stool. The most common treatment for jaundice is light therapy, also known as phototherapy, and often referred to as “bili lights.”  During phototherapy the baby is exposed to special lights that often look blue/green/white. Bilirubin is very sensitive to the light and it will begin to breakdown and be excreted in the baby’s stool.  This bead represents the time spent under the lights in the fight against the potential dangerous effects of jaundice.
  • The Turtle: Slow and Steady - The turtle is a symbol of patience, and protective energy.  The turtle takes its wisdom one day at a time- not reacting, simply accepting and moving on in its natural method.  Turtles are believed to be guardian angels that watch over, guide, and protect growing children.  Patience and perseverance are needed when traveling the NICU journey and the turtle can teach us that slow and steady wins the race.
  • Respiratory Support - (navy w/white spots) Respiratory distress affects as many as 43% of premature babies born between 30 and 32 weeks, and almost all babies born before that time. Full-term babies make surfactant, a soapy like substance that helps keep the lungs inflated. Without enough surfactant, premature babies’ lungs don’t inflate well. Preemies may need artificial surfactant, or may need help breathing while their lungs mature. The bead design represents the air exchange within the lungs with the light blue circles representing aveoli that are expanded as the air moves in. This bead represents respiratory support needs while in the NICU.
  • The Owl: Wisdom - The owl represents transition, protection, intuition, and wisdom. Owls are incredibly perceptive and have the ability to navigate even through the darkest of night. The owl is a symbol of inner knowing and draws wisdom from their inner soul- both spiritual and intellectual.
I will cherish this bracelet just as I cherish the journey.  Britt also presented me with an orange necklace cord and the starter bead for it (which is the imprinted feed bead, but this one is not painted orange), and two more beads to get it started - The Bee (Enduring Charm) and The Snake (Patience Charm).  I hope to build on those in the months and years to come.  Thank you, Britt, for this amazing gift - and for ALL that it stands for.  I love you so much -- you never cease to amaze me.

Monday, May 14, 2012

TEN: A decade in the making

The blog, like all my children, has been a bit neglected as of late.  This new job/move/baby surgery/end-of-school/sports/recital/CrAzY thing has gotten to me.  I haven't really missed any deadlines or skipped events completely, but I have been just under the wire more times than I care to count!  Including today when I totally flaked out on taking treats to school for the girls' classes to celebrate their birthdays with them.  Emma and Lara had each mentioned it last week, but I spaced out and forgot.  Mother's Day and Baby Dedication was yesterday.  I guess I was concentrating on that and not looking past the weekend.  But, thanks to their AMAZING Dad and cooperative teachers, they each got to have personal favorites for snacks this afternoon in their classrooms.  WHEW!

So, I am the mother of 10 year old twin daughters.  (And a five year old and 7 month old son, too.)  WOW.  I never thought this day would get here, and yet here it is.  Not much different from any other Monday in the past few.  Looking forward to school getting out in a week, trying to make sure we don't miss any rehearsals, practices, games or performances this week.  Trying to figure out exactly what it is I should be doing at work.  And with a blink of an eye, my first babies turned 10 years old.

4 months:

 10 months:

4 years:

10 years:

They are growing up into wonderful young ladies.  They each have their quirks, and their bad habits, but they are both loving, caring, creative girls who love the Lord and work hard everyday to meet the goals they have set for themselves.  They have changed a lot in the last year, having to learn some hard lessons and grow up so quickly.  I am loving having them in separate spaces for the first time in their existence as it seems to have changed them just a little.  They are started to appreciate each other more than they ever have.  The time they do spend together is slightly less electrically charged.  They even miss each other for short periods of time!

Here's to another birthday.  Double Digits!  They are already counting down the days until they are teenagers - just three short years away.  *sigh*  We had a little birthday time this morning before school where they got presents from us, and we went out to dinner to celebrate tonight.  They are having a small sleepover this weekend with friends.  A pretty quiet affair, but then again, that suits me just fine!

Wednesday, May 2, 2012


You can take the title of this post however you want to!  As a distress signal, a nod to the fact that yesterday was that spring holiday, or just as a fun reminder of the month we are in.  Either of these definitions would be appropriate at this point!  I am glad we have made it to the month of May, but this past week has caused some distress (and relief) along the way!  And while I didn’t see any May Day Parades, Maypole dancing, or have any May Baskets made for me, I still mark the beginning of this month as another milestone on this journey we are on.  Since it has been almost 2 weeks since the last blog post, there is some catching up to do!  Lots of things have changed since the last post!

2 weekends ago, we had our garage sale.  We did really well, and we got rid of all kinds of STUFF that we didn’t want to move!  Including Britt’s beloved VW Cabrio, the one we affectionately named Otto.  While we were sad to see the car go, it was not practical for us as a family anymore since it did not have enough seat belts to hold all the kiddos.  Bittersweet, as we had really come to love our little “around town” convertible, and we had bought it from my brother a few years back, so it was like losing a piece of him again.  But, the money has been put aside, and the search is on for a vehicle to replace our blue car.  In the meantime, we are trying to hang in there with just one vehicle, and borrowing my Dad’s truck when the need arises!

The next week was consumed by trying to pack, keep all the big kids activities going, getting Finn through his surgery, and moving to our new house.  WHEW!  I’m still not sure how we got through it all!  Thursday was the big day for Mr. Finn.  Originally, we had been told to be at the hospital in Tulsa at 5:15am.  That meant a 3:00 am wake up call for the Weaver household!  We had already arranged for Emma, Lara and Jake to stay at my parents, but we were super thrilled when the hospital called the day before and told us Finn’s surgery had been moved to 9:30, so we didn’t need to be there until 7:30.  MUCH more manageable for us older parents!  ;)  We got to the Children’s Hospital at St. Francis right on time, and the next 2 hours seemed to CRAWL by.   There were lots of little steps that had to be completed, and each one was leading up to us saying good bye to our precious baby.  Finn was a real trooper through all of it.  For being without food or water for over 12 hours, I was surprised at how well behaved he was!  We got a surprise visit from one of our Mercy NICU nurses who now worked at St. Francis!  Here’s a video clip of that encounter:

When the 2 nurses finally came in to get him and take him to his surgery to repair his left inguinal hernia, one said to the other, “I think I’ll just carry him.  These little ones just roll around in these big cribs so it is easier.”  That actually calmed me down a little bit – to know he was being cradled and loved as they took him off into the big unknown.  It was actually easier to watch him go than I thought it would be.  I knew God was in control, and this would be great.  It was almost an hour before the surgeon came to get us from the waiting room.  He told us everything went well and Finn was fine as we walked back to a small consultation room.  Once we were in there, he told us Finn was in recovery and doing well, and that this was one of the largest inguinal hernias he had ever seen, and then explained how he repaired it.  He also told us how they used a camera to look to the right side to make sure there wasn’t a hernia there as well, and all was clear.  When he was done with us, we went back out to the waiting room to WAIT some more.  Finn had to meet some markers before we could be with him, so we took that opportunity to call friends and family (and update Facebook).  It was almost 30 more minutes before we got to see our sweet boy.  He was in a hospital crib, in a small curtained off recovery area by the operating rooms.  He had a nurse with him, and he was sleeping.  He was still in the little yellow gown, and looked kind of pale.  He was very still, too.  It was so strange to see him hooked up to all the monitors again!  And to watch his numbers on the screen and hear the alarms – it was like we were back in the NICU!  She said he had been sleeping for a bit, but after we watched him for another 10 minutes or so, she said that we could wake him and offer him some sugar water.   When it came time to pick him up and feed him that bottle, I had to manage all the cords, too.  So surreal!  He O2 levels were a little low while in recovery, so they had some supplemental oxygen blowing up his nose while we were there, but he wasn’t even on a nasal cannula.  It felt so good to have him back in my arms – even with the strange smells, the endless cords, the beeping, and all the other hospital distractions.  I had a hard time getting him and I comfortable in the rocking chair we were sitting in, so Britt ended up feeding him the bottle.  After another 15-20 minutes, we finally had Finn’s O2 saturation up enough to be transferred to the floor he would stay on.

Once we were settled in the room, there was really nothing to do except wait it out.  Those first several hours Finn just slept and slept and slept.  They wanted him to drink 3 of the 2oz glucose water bottles and keep those down before we tried formula.  Later in afternoon, he had his first dose of pain medicine. We finally got to give him his first food in almost 24 hours that evening.  He kept that down, and we felt like recovery was going really well.  As the night closed in, we made our “beds” on the couch and recliner in the room (not a good place to sleep AT ALL), and hoped the overnight would go well.  Finn woke up for his typical middle of the night feeding, and he seemed to be running a fever.  Britt started feeding him while I called the nurse to have someone come take his temperature.  Sure enough, he had a little bit higher temperature than they wanted.  She went to get more meds, and Britt was still feeding him.  The nurse tried to administer the syringe of sticky acetaminophen into the baby’s cheek while he was drinking the formula.  The result?  PUKE all over Dad!  Funny, but not really.  I felt bad for my baby who felt bad enough to throw up, and I felt bad for Dad.  Covered in wet sticky (stinky) baby formula puke.  GROSS.

After we got that cleaned up and everyone settled back in, the rest of the night went smoothly.  We were seen on rounds about 8:00am, and we had hoped we would be released by mid-morning – we had to get back to Stillwater to meet the cable company at our new house.  But, since he had the fever overnight, they wanted to keep him a few more hours.  DARN!  We had basically packed everything up and were ready to bolt!  We passed the morning – so slowly – by taking about the upcoming move.  Britt even left the hospital to go to Best Buy – we still had not spent the gift card we won a few weeks back!  We were finally released to go home a little after noon.  The cable guy was due at our house about 1:30.  We still needed to take the TV over, too, so we knew we would not make it.  Lucky for us, we have Nana!  She went to our old house, got a TV and the DVR box, and went to our new house to meet the cable guy!  WHO, OF COURSE, WAS LATE!

So, the next 4 days were a whirlwind of packing, moving, crying, breakdowns, baby recovering from surgery, big kids frustrated with the process, friends helping, trucks being rented and returned, $100 trips to Lowe’s and Wal-Mart moving moving moving and cleaning!  WHEW!  Oh – and Volleyball, T-ball and dance thrown in there, too!  On Friday night, Britt and I spent the night on the floor of the living room after dragging the mattresses from each of Emma and Lara’s rooms while Finn was in his cradle beside us (big kids were on night 3 at Camp Nana and Grandpa!).  Saturday night, we all stayed at the new house in our own beds.  By Sunday night, 90% of our stuff had been moved, but only about 20% unpacked.  Britt took Monday off to try to finish.  I spent several hours at the old house Monday night cleaning, and we FINALLY finished cleaning Tuesday night.  Now, the new house is still a hot mess!  LOTS of unpacking and organizing to do, but it is so NICE!  We are all enjoying the extra room, the girls are loving being in their own spaces, Britt and I love our huge room, and Jake loves being in the same room with Finn while he sleeps (we don’t have a baby monitor yet, and we are pretty far from Finn when he is sleeping, so when we go to bed, we get Finn and put him in his cradle next to our bed. I don’t think Jake minds!)  If we work hard this weekend, I think we will be more settled before the new week starts.  We need it.  Living in chaos is hard!

Life in the “75” is good.  I have been a resident of this town off and on for my entire 37 years of live, and I haven’t lived outside the 74074 zip code since Kindergarten; not north of 6th street.  (Not even east of Western until 3 years ago!)  We now have a new zip code.  It ends in a 5.  So strange for me!  But, the neighborhood is very nice, close to the lake and its awesome walking trail, and come to find out, we know several people in the area.  I think it is going to be good.  Once we get settled.  I still can’t find anything in my kitchen… Hence the picture:

T-ball games and practices 2-3 time a week.  A Volleyball tournament this weekend.  Dance recital is just around the corner.  Finn goes in for his post op in 2 more weeks.  15 more school day mornings.  Then, it’s summer!  Hopefully, things will calm down a bit then!