So many have followed this blog and continued to check in on what is happening.  To each of you, we are thankful.  As life has changed, I have neglected to update here in quite some time.  Please join me on facebook for continued life stories, experiences and updates.

Many blessings to you and each of yours!

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!

Aside from crawling so much (offering rug burns on his knees regularly), Simon is also pulling himself up along furniture, in his bed and along the gates that finally had to be installed.  Simon is able to tackle the stairs, though I still cringe at the thought!  Simon’s vocabulary is coming along nicely too.  He is up to NINE words now and babbles even more.

Simon has even had some pretty amazing successes in eating solid foods.  Of course he’ll chow down on an Oreo, but also enjoys toast, macaroni and cheese and some pureed foods as well.  The thickness of his bottles is slowly decreasing too.  Another couple of months and he might transition into a toddler diet.  Time will surely tell!

While Simon is thriving and spending most days off oxygen, though still dependent while sleeping, I can’t help but think about another little girl who struggles each day, for different reasons.  Darby is about twelve weeks old and had two surgeries last week due to Biliary Atresia.

Cells within the liver secrete a liquid called bile, which is made up of cholesterol, bile salts and waste products, including bilirubin. A network of tubular structures and tiny ducts form the biliary system to drain bile from the liver to the small intestine where it aids in the digestive process. Biliary atresia is the closure or disappearance of the biliary system.

For everyone who has followed Simon’s journey, looking back at the photographs taken shortly after he was born is a reminder of how fragile life is.  The following picture of Darby is no different.

NotSoAverageMama.com

As I scan over the picture, I know what each tube and line represents.  I also know the struggle that this family is going through at this moment.  They, too, live an hour and a half away and have other children to support.  The emotional roller coaster is difficult enough without factoring in the needs of your family as a whole.

stitchblade has posted and set up a donation button for Darby on her blog, Not So Average Mama.

God heals because that is His pattern for revealing His nature through His Son. With compassion, Jesus chose to touch the festering sores of the leper (Matthew 8:3). He showed mercy as He touched the crusted lids of blinded eyes (Matthew 9:29). In receiving healing from God, we must earnestly desire to touch Him as well. “People brought all their sick to him and begged him to let the sick just touch the edge of his cloak, and all who touched him were healed” (Matthew 14:35–36).

We know just how powerful prayer is in bringing one child from death to thriving.  Join us in prayer for Darby!

I put Simon to bed last night on his Tucker Sling.  He’s been sleeping on his back to help with some of the congestion issues, but since they started to clear up a bit last night following a miserable nose bleed, I put him on his stomach.  Throughout the night I woke to check his oxygen saturation levels and was pleased to see that at 1/32 L he was maintaining 95%!  Where his saturation levels sit at night is a good indicator of where he’ll be the next day and if he’ll be able to spend time off oxygen.

This morning he got up, took a bottle and quickly went back to sleep for his morning nap.  When he woke, we put him in his high chair and filled the tray with various foods and let him play and eat all at the same time.  He kept pulling at his oxygen, so I took it off and let him have fun.  I grabbed his pulse ox and checked on him while he was without his cannula and found him sitting between 92 and 95%.

When Simon was ready to come out and play, he seemed to thoroughly enjoy being free to meander around without any limitations.  When he began screaming “NI NI” I made him a bottle and tucked him in – with oxygen.  He doesn’t maintain his saturation levels well enough to go without while sleeping yet, but today was definitely a great day for freedom.

The rest of us are playing.  Jaden is running around with friends outside, Rob is playing music and I’ve been playing with words.  What a fabulous way to round off this Labor Day Weekend!

Simon has been fighting a bit of a cold and has been back on oxygen for about a week or so.  I have a feeling that’s how our winter will go; off and on.

All in all, we’ve been a busy bunch.

This afternoon I got the call I’ve been waiting on for a few weeks.  Simon’s glasses were finished!  I headed out just before five to pick them up.

Yes, I took pictures.

Yes, I’ll share!

But not yet…

Simon is definitely not sure what to think of yet another item on his face.  He’s done everything he can to get the glasses off and since he needs to wear them for at least one hour today, we have put socks on his hands until it’s time to take the spectacles off.  The poor bug isn’t sure what to think, but it’s pretty amazing to watch him look at toys in a completely different light.

And one more since he’s so darn adorable without oxygen!

It started last night.  I put Simon to bed and as he began to drift off to sleep, I put on his pulse oximeter.  On 1/8 L, he had an oxygen saturation of 97%.  I dropped him down to 1/16 L and waited.  After twenty minutes, Simon was still around 96%.  Again, I dropped him, this time to 1/32L.

Twenty minutes passed and Simon was still in the mid-90′s, fluctuating between 94 and 95%.  By morning he was maintaining well and as he took a short nap this morning, I checked his saturations again:  94%.

As of this moment in time, Simon is running around WITHOUT oxygen!  I know that he’ll be back on it shortly, but for now, he’s free.  Free from hoses, limitations in distance and free from pastic irritating the inside of his nose.

I can’t express how amazing it is watching Simon go without added support, even if temporarily!

www.bumbobabyseat.com

It seems with every new child brought into the world, more products are created that could clutter and fill a home to the brim.  Some products scream fad more than others.  Today’s question:  To Bumbo or Not.

Benefits:

• Lightweight
• Supports infant’s trunk
• Provides space for play/eating
• Encourages individualized play
• Easily transported from room to room or traveling
• Provides a transitional seat before high chair
• Takes up little space

Downfalls:

• Infant’s skin can stick to surface
• Textured surface can be difficult to clean
• With enough force, child can tip backwards in chair

The benefits and possibilities for using the Bumbo seat far outweigh the downfalls, especially if you follow the written warnings and keep your child within sight.  Should you decide to run with the current trend and pick up a Bumbo seat, they can be found locally at Wal-Mart and Target between $30-$50.

Happy Sitting!

www.julbousa.com

Simon had his six-month follow up this morning with Dr. Arnold of Northern Colorado Eye Center.  At his appointment in January, everything was looking great from the surgery.  Today, his ROP treatment is still looking great.  The blood vessels have continued to grow in a good pattern without becoming monsterous at all.  All news we wanted to hear!

The only concern I had when walking into his appointment was an apparent depth perception issue, as noted when he reaches for toys and misses, his hand landing in front of them.  As we discussed this, Dr. Arnold checked Simon’s eyes – and noted quite the extreme near-sightedness in his left eye.  The culprit of the near sightedness.

Simon will be wearing glasses all too soon.  I took him into a local shop this afternoon and ordered a pair of Julbo Looping frames, green and Blue, of course!  They will pull out the tinted lenses and replace them with prescription lenses instead.  They should arrive in about a week.

We will follow up with Dr. Arnold on October 29.  As long as Simon is utilizing both eyes well and progress can be seen at that time, we will be cleared to go.  If Simon is still having an issue using his left eye, we will need to use a patch over his right eye to encourage use of the left.

All in all, I couldn’t complain about our appointment.  Simon did fantastically in my lap while Dr. Arnold checked his eyes.  I was thrilled!!

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.

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!