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 2^nd 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 4^th) 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 37^th 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 4^th 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 5^th 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 4^th or 5^th 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 6^th (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 20^th, 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 5^th 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