Posts Tagged ‘home at last’

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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It’s been a long week between colds, ear infections and Simon back on oxygen.  As our long weekend has progressed, today has become a day devoted to good food and much relaxation.

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!

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I never thought we’d see this day for a long time to come.

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!

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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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Last week, Simon had a bit of a runny nose.  By all other accounts, he was doing relatively well and seemed quite healthy.  Tuesday night, we went to Nana and Papa’s house and after we got home, something just wasn’t right.  Simon’s oxygen requirements went up considerably.  I made the call to the pediatricians office and after receiving a call back from The Children’s Hospital in Colorado, a trip to the emergency room was necessary.

We stopped in briefly at our local emergency room.  I carried Simon in with no intentions of admitting him there.  I asked for a nurse to check him over and ensure that he was stable for transport to a hospital 45 minutes away.  The charge nurse stood with me and watched his colors, breathing and pulse-oximeter.  The charge nurse saw no imminent concerns and out the door we went.

I came home and picked up Rob and Jaden.  We had reached the early morning hours of Wednesday by this point.  Once everyone was loaded, we made the drive to Poudre Valley Hospital in Ft. Collins, CO.

We didn’t wait to be escorted into the emergency department.  The nurses took vitals and the doctor quickly came to order an RSV swab and chest x-rays after listening to his lungs.  As we waited for the radiology department to whisk us away, a respiratory therapist came down and set Simon up with a nebulizer treatment.  About the time Simon’s RSV test came back negative, we were wheeled into radiology for our x-rays.

I was quite impressed that the technicians were able to arrange Simon on my lap for his films.  They did an amazing job taking his emotional needs into consideration.  After we were finished, we went back to our room in the emergency department.  It didn’t take long before the doctor was back with a diagnosis of Bronchiolitis.  He prescribed an antibiotic and requested we follow up with Simon’s pediatrician in the next couple of days.

Friday we saw Dr. Leland.  He was quite concerned that Simon was still raging a fever and wasn’t sounding well.  He ordered more x-rays and another nebulizer treatment.  After the films were developed, Simon’s diagnosis was changed to Pneumonia.  Dr. Leland said that Simon’s pneumonia was “fully infused in the right lung.”  I was sure that Simon would be admitted into the hospital at that time.  Dr. Leland mulled over his options and said, “Any other parent, any other child and I wouldn’t hesitate to admit him.”  Instead, we were given orders for a home nebulizer, prescriptions for Albuterol, Pulmacort, Prednisone and Augmenten.  All together, that rounded Simon’s medications to eight.

Simon and I left the office with the understanding that should he worsen at all, I would bring him to the hospital to be admitted.  Saturday, we had an issue with his pulse oximeter that took us into the emergency room for five grueling hours.  He, however, was discharged.

This morning we saw Dr. Leland again.  Dr. Leland worried all weekend about his decision to send Simon home instead of admitting him into the hospital.  He was pleasantly greeted by Simon and I playing and Simon smiling.  He assessed Simon and feels it will be a long road to a full recovery, but knows that he made the right choice in allowing this Mom care for Simon instead of a random nurse in the hospital.

The approach is aggressive.  Two steroids, two antibiotics and nebulizer treatments round the clock.  So far the lack of sleep is paying off.  This evening, Simon is back to moving around, crawling (or his version thereof) and many smiles and laughs.  He has even assisted in administering albuterol nebulizer treatments himself!

Next week, Simon will be ONE!

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That would be our world. One moment is filled with much gleam and the next brings disappointment. I most recently discussed Simon’s success with spoon feeding. The joys were short-lived.

Simon has had another ear infection. This is his third in six months. One more in the next couple of months means tubes. We’ll see how this goes. Having tubes, the surgery itself, is simple and short; lasting approximately 5-10 minutes. Anesthesia, however would be the problem. We would probably require a trip to Denver Children’s Hospital as the anesthesiologists here would be leery to work on Simon as he’s oxygen dependent.

Another downfall to this most recent ear infection has been Simon’s regressions in eating. By the time he was given antibiotics, he was back down to taking only 2-3 ounce bottles with each sitting. Spoon feeding was out of the question, though it was offered. He’s finally starting to take 4-5 ounce bottles again. Perhaps solids will kick back up and into his regular routine as the weeks move forward.

Our two goals for Simon for this summer were successfully reintroducing solids and weaning him off oxygen. At his appointment on Tuesday, we discussed both of those goals. Dr. Leland and I are fairly certain that Simon will do okay with solids, though oxygen is a different subject all together.

As of late, Simon has been desaturating during the night. His oxygen requirements have increased, too. We are currently utilizing a few different liters throughout the day. It could be another year before Simon will be truly ready to come off oxygen permanently.

We were quite disappointed to hear the news, but somewhere deep down, I knew that would probably be the case. Simon went from 1/32 of a Liter up to 1/8 and now we are regularly sitting at 1/4L. Any time he gets any kind of bug, it wipes out all of his reserves and we have to start from scratch again.

It’s going to be a long process for Simon. We knew that going into our journey with a preemie, and that hasn’t changed yet. Simon will see Dr. Leland again at the end of the month for his 12 month appointment and follow up.

Can you believe he’s almost a year old? How time does fly.

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As part of our therapy, we have always followed Simon’s cues.  We watch for signs of tiredness, weakness, unhappiness, joy, etc.  Tonight was no different in our time together.

I’ve been putting Simon in his high chair when we eat at the table.  I’ve offered plenty of toys for him to play with and have done everything possible to make that chair a pleasurable experience.  When he’s tired of it, we get him out and hold him in our laps or return him to the floor for more scooting and rolling.

As Simon intently watched the rest of us eat, I opted to get out one of his baby spoons.  It was quite comical watching him interact with that green piece of plastic.  He picked it up and first beat it on the tray.  Before long, Simon began hitting his chin with the spoon.  With a few more minutes of play, (and dropping it down the side of the chair) Simon managed to get the spoon into his mouth.  Carefully I watched Simon’s reaction.  He didn’t gag, he didn’t look shocked and he even began to use his tongue to play with it.

I took the cues he gave and grabbed some squash.  I took a red spoon and touched it to his lips without food first to gauge his reaction.  He was pleased and opened his mouth.  I then just tapped the spoon into the food and let him get a small taste.  Simon wasn’t sure at first, but quickly began moving the food around in his mouth and his eyes perked.  Simon opened his mouth, so I jumped to give him another small taste.  In it went and in it stayed!

Slowly I began increasing the amount of food going into his mouth.  At the end of 30 minutes, Simon had taken 1/4 of the jar!

It’s in following the cues of Simon we know what he needs as an individual.  Success in solid foods was found tonight by watching closely and listening for the silent cues. Now, let’s all join in and shout “Hooray!” and encourage this route to continue!!

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