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Posts Tagged ‘celebrations’

I can’t believe that it has been so long since I last posted. I actually had made it a goal to post twice a month, but the last month has been a bit crazy. Rob and I found a house in Pine Bluffs and an offer was made. We are now busily working on packing up all the belongings we have to move them over.

Simon is 15 months old now, actual and two weeks shy of 1 year, adjusted.  It has been a long but incredible journey with him.  Last winter we were hunkered in with no germs to come and go.  Keeping Simon well was a simple task and much more challenging now.

Simon is babbling and talking up a storm, when he feels the need.  He’s also beginning to sign a few words.  He is cruising along furniture and walls.  In short, he is doing everything that he should at 1.  Go baby boy!

We are battling a bug of sorts currently.  He has been up and down through this, but we are pushing forward.  I can’t wait to move and take him 1000 feet lower in elevation.  Hopefully the change will help his lungs tremendously.  I know the lack of wind is enough to leave me elated!

So as we begin our journey to a new home and a new life, I bid you farewell for now.

Until next time!

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A Long First Year

Pregnancy is a joyous time for most families.  Excitement builds as the weeks pass until that amazing moment when a bundle of joy takes their first breath and begins learning the world around.  For some parents a premature birth changes excitement to fear, angst and sorrow.  Those parents face many months visiting their child in a Neonatal Intensive Care Unit.  We were no different.

We have all long desired to add to our family. March 15, 2008 brought the exciting news that we were expecting. The first trimester came and went with no issue. I felt tired, but over all it was a great trimester with little morning sickness. The second trimester started well, but quickly turned into a challenge. At eighteen weeks I was placed on bed rest following my first admission into Labor and Delivery in pre-term labor. I was placed on medications to assist with the contractions and monitored closely. During that same visit, it was discovered that I had a partial placenta previa and we were expecting a little boy. Weekly ultrasounds were done to watch my cervical length and the previa. Within two weeks I began bleeding on occasion. It came and went quickly and as long as it stayed at bay, we were safe.

By week twenty-three the bleeding had increased (or so we thought) and it was a struggle to make it through each day, getting closer to the magical number of twenty-four weeks; marking viability. During this week I lost the tail end of the placenta that was still covering the cervix. With that, I had an increase in bleeding, but was classified as stable. Sunday, July 27, 2008, I went down-hill quickly. I went to bed feeling quite uneasy and awoke just before 8 am (July 28, 2008 ) having problems. I phoned my OB and was asked to come in at 11. I did.

During that appointment, Katie and I discussed the various issues I was having and it was decided that I would be admitted into the hospital and evaluated, assuming I would be transported to Colorado at some point in the near future. Around 2 in the afternoon, I had an ultrasound while in Labor and Delivery. As stated, “Simon isn’t quite plastic wrapped, but it seems you’re sac has been leaking.” I was given a steroid injection at 2:45 while the doctor made the necessary calls to determine which transportation route was best for our situation. Doc returned and casually asked how I liked helicopter rides. Life flight was being dispatched and would be there within 45 minutes.

Transferring from hospital bed to air-flight bed was a challenge and left me feeling extremely uneasy. I was loaded onto the helicopter and situated. They turned on the rotors and the noise was incredible, even through the ear protectors. We planned a thumbs up and down signaling to communicate. Should I have serious disruptions, thumbs down was the way to let them know. We took off and my anxiety levels increased. I finally settled down in the flight and focused on the GPS unit on the dash. I could see what cities we were approaching and passing as we flew. It took thirty-five minutes to get from Cheyenne to University of Colorado in Aurora.

I was unloaded and put in an ambulance for the short drive to the emergency room. We rushed through to the back elevators and arrived in Labor and Delivery in no time. Upon arriving, I noted that it had then been six hours since taking medications for the contractions and had been on a three-hour schedule. The evaluation and check-in process seemed to take forever. By seven it was decided that I would deliver that night as it was assumed I had an infection from the sac being compromised. The nurses left and I was able to make a few phone calls and determine where Rob was on his journey. (Our doctor in Cheyenne did such a good job of calming him down, he hadn’t left yet as it was assumed it would be at least 12 hours before I would deliver, allowing for a partial dose of steroids.) I quickly got off the phone with him and the nurses came in and said that they would be doing a pelvic exam.

The pain was so intense by that point, it took everything I had to stay focused on what was going on. Simon’s sac ruptured completely during the exam and along with that came increased bleeding. The nurse was off to call the doctors and catch them before performing a c-section on someone who actually trumped me prior. They changed plans and rolled me into the operating room. I met the anesthesiologist who attempted twice for a spinal block. After the second failed attempt, I was given the option of a third. I requested that they just place me under general anesthesia at that point. I counted back from ten in my mind and didn’t get past six before I was gone.

I woke in recovery in quite a bit of pain. Rob was there and the first thing I inquired about was Simon’s status. The nurse informed me that he was stable in the NICU and was born at 8:42 pm. I asked when I would be able to see him and she said after I was transferred back to my room, they would get me there. After an hour in recovery, the room began to fill quickly with mothers, fathers and babies. They were considerate of our feelings and promptly got me into my room. After being situated and getting to drink fluids for the first time in many hours, I called the nurse and requested to go to the NICU. It took some maneuvering of my bed, but I was wheeled into the NICU to see Simon for the first time.

I didn’t want to leave his side, but knew that I had to return to my room. He looked perfect – just tiny! We were told that he weighed 665 grams or 1 lb, 7 ounces and was 30 cm or 12 inches long. A perfect little person, born at twenty-four weeks gestation.

As in our situation, we sought balance between our then four-year-old son, Jaden, and Simon.  I can’t count the hours I spent driving between our home and the NICU over 100 miles away.  Traveling that distance was exhausting and expensive.  We lost my income during my pregnancy as I was on strict orders of bed rest.  Rob spent more hours working overtime than I would have liked.  We did all that we could to ensure we would meet our financial obligations.  It just wasn’t enough.

Through many social networks, family and fabulous friends, online and in real life, donations were raised to help us on our way.  In total, we received just under $6000 from many different people.  Those funds carried us through one of the most difficult times in our lives; one child who didn’t understand why his brother couldn’t come home and the other fighting each day to survive.  Finding the means necessary to spend time with both of our children was vital.  Those who opened their hearts and wallets provided the security we needed to accomplish just that.

We looked for ways to cut our costs while in the Denver Metro area.  Instead of staying at a hotel, we bunked at the Ronald McDonald House, for a nominal $15/night.  They provide rooms set up like those in a hotel, but provide pantry storage, refrigerators, complete kitchens with dishes, pans, pots and tables for eating.  We were able to buy our groceries and cook our own meals.  The money we saved in not eating out or eating at the hospital was astronomical.  When I traveled half the week by myself, I utilized the family rooms in the NICU.  I packed a cooler with non-perishables to eat and the cost of the room was nothing.  Gas was an expense we couldn’t cut, no matter how hard we tried.

Simon was born 111 days prematurely.  His stay in the NICU ended on November 20, 2008; 115 days after his birth.  Making the drive home was exhilarating and frightening.  No longer would we have a nurse caring for Simon twenty-four hours a day, seven days a week.  Simon’s care rested on our shoulders.

Simon was discharged from the hospital with oxygen, pulse-oximeter and an apnea monitor.  As his first birthday approaches, Simon still utilizes all of that equipment – and more.  The added expenses didn’t stop when traveling became less frequent.  A few weeks after Simon was discharged, he needed emergency surgery to repair a hernia.  That surgery required two trips back to the Denver area and a few nights stay.  We also have had to travel many times to see various doctors in Colorado, our neighboring state.  Compared to the early expenses, these trips have been nominal, but the cost continues to accumulate for us, as for the other families facing similar situations.

Simon could be called a life-changer for us.  His presence reminds us daily that no matter the difficulty, we can make it through.  Not only has Simon offered that to us, we’ve been blessed to have shared his story and continued progress (and set-backs!) with the world.  As we all sit back and reflect upon a life born so fragile and frail, we wipe the tears as he crawls across the living room floor all while battling pneumonia.

Should you wish to celebrate Simon’s first birthday with us, we ask that you consider opening your wallets and making a donation to The March Of Dimes, an organization that will help families of preemies cover travel expenses and purchase necessary equipment.  Should you be so inclined, please make donations in honor of Simon Gabriel Reutlinger.

Thank you all!

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With my boys, I always found myself elated when they uttered their first words.  For Simon, this is no different.  The once quiet house is now filled with “Momma” all the time.  No matter what he needs, it’s Momma.

We have other milestones to report, but those will have to wait for another post.

Until then…  Enjoy!

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Brothers are an amazing thing.  They fight, play rough and at times get along great!  The bond between brothers is strong enough to last a lifetime through all the ups and downs that life may bring along the way.  Simon and Jaden are a lucky pair.  They will have the opportunity to beat one another up, steal toys from the other when one absolutely has to play with it and more so, they will get the chance to encourage one another.

Jaden long wanted a sibling.  I can recall shortly after Rob and I got together Jaden began asking for a sibling.  He wanted a brother or sister to share in all of life’s journeys.  Excitement filled Jaden’s eyes when he learned that he was expecting a sibling in March.  He wanted to talk to my belly and feel the flutters, kicks and movements his brother made.  The bond between Jaden and Simon began while I was pregnant.  Jaden was cautious and protective.  All Jaden wanted was to be with his brother and teach him many things about life, especially Ben 10.

When my pregnancy turned sour, Jaden slept on the hide-a-bed with me many nights.  He longed to be as close to Simon as feasibly possible.  I didn’t mind that as it was a pretty stressful time in our home.  I encouraged Jaden to talk to Simon and tell him how much we wanted him in our lives, singing the ABC’s and just talking about the interests that Jaden has/had filled many of our days and nights.  It was amazing to see how Jaden loved interacting with Simon.  The antics of these brothers elated my heart and soul.

Since Simon’s birth, Jaden has struggled with Simon not being home.  It has definitely gotten a bit better since we’ve been in Aurora.  Jaden has the opportunity to see Simon daily if he desires.  He loves getting on a chair to peer into Simon’s bed and watches in awe as his brother moves around.  Jaden will open the “doors” to the isolette and rest his hands in and gently holds Simon’s head and arms, a physical therapy technique that helps Simon to calm down and relax.

Jaden on the Chair

Jaden on the Chair

Jaden's Ready to Help!

Jaden's Ready to Help!

Soft Touches

Soft Touches

Special Moments

Special Moments

Going through this experience has been an amazing and unique experience for us all.  Jaden and Simon are no different.  Their views differ immensely from those of myself or Rob.  The world through their eyes is incredible to consider, at best.  Imagine the moment you learn that you have a sibling and at the same instant, learn that you are not able to see that sibling.  Crushing, frustrating and devastating is how I would picture that moment for myself.  That’s no less than what Jaden experienced.  Seeing Simon for the first time elated Jaden.  He wanted to touch Simon, hold him, kiss him and more.  The opportunity for that didn’t arrive until after we were here.

The bond between Jaden and Simon has grown in this time.  Simon recognizes Jaden’s voice and looks around to find him when he speaks.  Simon has offered many smiles to Jaden too.  As for any sibling, being able to hold one another close to hug is especially important.  For older siblings that comes with cradling their brother in arm and looking with amazement at the tiny body who will spend many years looking up and older sibling looking after.  Jaden was able to experience that October 1, 2008; nearly one month since he first laid eyes on Simon.

Jaden and Simon

Jaden and Simon

Together - At Last

Together - At Last

Can you imagine the elation?  Jaden will forever be able to say, “I held you when you were just three pounds!” to Simon.  What an awesome experience for brothers.

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I promise!

I’ve been a bit busy working on life and writing.  I have an article coming out in The WAHM Magazine this week and a few more I’m working on for that same magazine.  It’s great to have a direction to take with my writing.  Alas, that does mean that I’m not blogging quite as often.

Simon is doing well.  He was extubated late last week and has done well on the CPAP thus far.  From the ventilator, he was placed on maximum pressure, rate of 7, and has now been weaned down one step to 6.  So far he’s faired well with that.  Simon did lose a few grams with the change, but has come back up to nearly his pre-extubation weight.  We are pleased with the progress.

Simon is now seven weeks old and adjusted age of 31 weeks in gestation!  Way to go little guy!

I will be in Denver tomorrow, hopefully for the last single day trip during the course of this.  I have a meeting with Early Intervention in the morning with the intended snuggling time following.  I’ll bring back pictures of the masked marvel to share.

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Today is Simon’s month-birthday!  Can you believe it??  He is truly a month old!

With no news being good news, I can say that no new updates is a good thing tonight!!  In light of that, I’ll offer a few statistical tidbits to mark the celebration.

  • Weight 865 Grams (1 lb 14 oz)
  • Length 32 cm (12.5 inches)
  • Shoulder Span 10 cm (4 inches)
  • Foot Length 5 cm (2 inches)
  • Blood Transfusions – 6 or 7
  • PICC Line Removed
  • Up to full gavage feedings
  • Still on respirator

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As a family, we are well aware of the ramifications of simple viruses and their possible detriment to Simon.  With Jaden catching a cold and laryngitis subsequently, Rob and I have been really watching our own bodies to see if any signs and symptoms were surfacing.  This morning we are both seeing the beginnings of a nasty little virus plaguing our lives.  We intended on traveling down to see Simon tomorrow, but are leaning more towards staying home – just to be safe.

Simon has been fighting his own viruses with a bladder/kidney culture coming back positive.  He was started on antibiotics Friday and those ended yesterday with everything returning to normal status.  We have no signs of a bug through all of his lab work.  It seems the little guy is on the mend that way – and more! Simon’s feedings will increase tonight to 9mL every 2 hours, taking him to 108mL or roughly 3.5 ounces per day of breast milk.  His milk has been fortified with calories to assist him in gaining weight.  He’s still receiving caffeine orally.  Our little guy gained 50 grams yesterday, taking him to 885 grams or 1 pound, 14 ounces!  He’s just 25 grams shy of our benchmark weight of two pounds!!  Simon’s oxygen levels are still running between 40 and 50 percent, hopefully to see those decreasing soon back into the 30’s.

As a size perspective ratio, I want to share with you a picture of diapers.  The larger of the two is a size 1 diaper and the one next to it is a diaper from a package that Simon wears currently.  This diaper is still too large for Simon and when folded is about the same length as a AA battery.

Diaper Time

Diaper Time

In light of the fabulous news, I’ve opted to share some special photos taken while visiting Simon with Nana and Papa Sunday.

Snug as a Bug

Snug as a Bug

Jaden's Size Comparison

Jaden's Size Comparison

Sweet Sleeping Simon

Sweet Sleeping Simon

Our little man is growing up and growing stronger.

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