“Momma”

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!

Up and Down, repeat often

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.

Following Simon’s Cues…

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!!

Friday’s Visit with Doc

We were fortunate to see Doc on Friday. We actually had a follow-up to Simon’s ear infection, but took the opportunity to go over some progresses we’ve had with Simon and his feeding difficulties. Doc was quite impressed and even witnessed Simon eating while there. After assessing his weight, the number of days, Simon’s activity level and calorie consumption; we’ve been cleared to not go to Denver for a week – at least for now.

Simon was down to 16 pounds 13 ounces and has gained an average of 1/2 an ounce for 23 days. The gain is enough to keep him chugging along at home. We are continuing on with therapy and will utilize our SLP and OT greatly when time comes to reintroduce solids. Until that time, we are going to cruise with bottle feeding.

I also want to state that we’ve had an amazing success with an added item in Simon’s life. Through a series of happenings, we have acquired a Tucker Sling and bless that wedge each and every day. It’s made an enormous difference in Simon’s sleep habits and comfort. To Terry – THANK YOU!

Until later this week,

God Bless!

Spring and Summer

Wyoming springs and summer bring the opportunity to change up a few things in our routines and begin spending more time outside.  We’ve still managed to keep Simon in quite a bit, but have enjoyed a few more walks and quiet evenings enjoying the sunsets.

This season is bringing a few additional changes to our lives.  Jaden is preparing to go into Kindergarten, Rob will be attending the Wind Energy Program with the goal of attaining his associates degree, I’m going back to work and Simon will be tagging along for the fun.

Our schedules are changing, growing and accommodating all the excitement of fall, winter and the new year.

Simon is also very active.  He’s mastered rolling and is now inching himself backwards on the floor.  Before long that inching will turn to crawling and I’m not ready!

Simon’s taken well to his medicine regiment and sees the doctor again next Friday.  Therapy is going well and will continue throughout summer, guaranteed.  We are thrilled at the progress Simon has made.  He’s turned into a very curious little boy.

Without further ado, a video of our little Preemie miracle.

Bionix Controlled-Flow Baby Feeder Day 1

As with Simon’s feeding challenges, we’ve settled into a routine of thickening his feedings.  That began prior to discharge home and has changed, but continued since.

To recap:

Simon spent 14 weeks with a feeding tube of some sort.  He’s had Nasojejunal, Nasogastric and Oral-gastric feeding tubes.  When he began nippling, all went well to start and quickly became a challenge as his feeding amount increased.  His reflux was severe enough that he would experience bradicardic episodes while being gavage fed through his NG tube (at the time.)  A barium swallow study was ordered and while they didn’t wait long enough to watch the force or amount of food coming back up, they were able to watch as the liquid was entering the trachea and into his nose.  Thickening was necessary to prevent aspiration.  We began with Simply-Thick and have moved to rice cereal as Simon had intestinal challenges with the Simply-Thick.

Today’s trial:

Getting the Bionix Controlled-Flow feeder together was quite simple following the instructions.  We began with our standard thickness of 3 tsp cereal to 1 oz juice.  This was a bit too thick for Simon even on the highest setting (5), so I opted to make a formula bottle slightly thinner with 2 tsp of cereal to 1 oz.  I began at setting 1 for the slowest flow, slowly increasing until it was obvious that Simon was getting fluids fairly easily.  He did okay for approximately 10 cc’s, but began coughing.  We opted to stop there for today, allowing him a rest and brainstorming opportunities for me.

Ideas:

We will try a few different consistencies of both liquid and milk products to see if we can find one that might work through the feeder.

Product:

At this point, I can safely say that this bottle would have been highly beneficial while in the NICU with Simon.  We would have had more control over the quantity he was taking into his mouth in one suck.

Therapy Continued

Yesterday was a good day for Simon in that Megan came out to visit and brainstorm. While he didn’t eat, we did discuss all the ups and downs, activities tried and worked on finding additional items and activities to try.

Things we’ve tried:

• Feeding in his chair
• Feeding in his bed
• Feeding in our laps
• Feeding in our arms
• Multiple bottles and nipple flows
• Spoon feeding
• As soon as he wakes
• As soon as he shows signs of tiredness
• Various thickness to his formula
• Juices
• Water – with and without sweetening
• Less food, more often

What we are going to try:

• Controlled Flow baby feeder
• Flexi-cup
• Various solid food holders.

The ultimate goal is to get Simon eating more and find something that will work well for his current needs.  He had a great deal of fun playing with the solid food holder this morning and did get it into his mouth.  He didn’t appear impressed with the texture of the mesh, but we’ll continue trying.

It’s quite stressful when Simon won’t eat.  While we don’t want his entire life to be about eating, we don’t want him malnourished either.  Finding a balance is quite the conundrum.  We reach out to all of you who’ve followed Simon, stumbled upon this blog and have similar experiences for suggestions.  If you’ve tried a product that worked, please pass it along.

Simon’s Journey

It’s been a long nine months. We’ve had major ups and major downs. Somewhere along the way we’ve been more than blessed to be able to share this with you all.

Thank you for the support, encouragement, love and prayers!

Therapeutic Moments

Prior to Simon being discharged from the hospital in November, we set up therapy with Stride Learning Center.  We had a few individuals come out for the initial paperwork and off-site evaluation.  As parents, we were able to mark that requirement off our to do list before home-coming.  Once Simon was discharged, we were ready and able to start therapy almost immediately.

Our team of therapists includes physical therapist, Jennifer; speech language therapist, Megan and our Family Service Coordinator, Sunny.  We’ve worked with each person separately and together since November.  Out of the team, we see Jennifer weekly, Megan monthly and Sunny either as we call and need her assistance or as she’s able to come out with one of the other therapists.

These individuals have been a great asset to Simon’s progress and development to date.  Their knowledge on basic functions and development has offered many insights into problems with Simon.  They have also become our team to rely on when issues arise that we don’t possess the knowledge to change and correct on our own.  This is the case with our feeding difficulties that have developed suddenly.

In addition to the three individuals currently on our team of therapists, we will also be adding an occupational therapist to our team.  Our family service coordinator will be presenting Simon’s case to the full staff tomorrow and an OT will be added to his team to assist with sensory issues pertaining to Simon’s eating challenges.

The benefit to a full team is their ability to work together and individually to ensure that not only Simon’s needs are met, but the family as a whole is cared for and understands all aspects of the dynamics involved.  It’s within talking to each person and the team we are able to have the greatest therapeutic moments within Simon’s care.

“Simon the Pieman!”

That’s what doc calls Simon.  It always elicits a smile during our extended, sometimes seemingly never-ending appointments.

Today was Simon’s nine-month check-up.  His stats are great!

• Weight 17 pounds, 2 ounces (5% for 9 months)
• Length 26 inches (3% for 9 months)
• Head 44 cm (almost 10% for 9 months)

The kid has a big head.  We’ll take it!

On the agenda for today’s appointment:

• Feeding issues
• Constipation
• Muscle Weaknesses
• Developmental issues

We were given great commendations for continuing to persevere through Simon’s feeding difficulties.  Even with his oral aversions, he’s continued to take in enough calories to continue to gain weight.  Simon officially hit the charts at this appointment.  There’s major celebrations to be had for that accomplishment in his life.

We have been referred to The Children’s Hospital in Aurora, CO.  I’ve called and we have about a two week wait before we’ll even get an appointment.  They will go through all aspects of Simon’s eating challenges and developmental issues associated and work out a plan of action while we are there.  The typical appointment actually consists of many appointments during the course of a week.  It’s very in depth, hopefully giving us the opportunity to keep Simon from needing a feeding tube, though it was discussed today.

Along with challenges in feeding, Simon has had some severe constipation as his fluid levels are below normal.  We’ve been given a medication to help with that issue.  It will take some trial and error to find the right dosage for him.  We were also gives prescriptions for prevacid, zantac and hydrocortizone cream.  The first two are for his reflux and the second is aimed to help his skin heal where the tender grips (sticky tabs) go on his face to hold his cannula.

As part of the appointment series at TCH, Simon’s muscle weakness and developmental regression will be evaluated.  There is also a physician that travels to Cheyenne from the Denver area that we will be given the opportunity to see in correlation.  Until that time, we progress as we have and continue to do all his exercises to his limits.

That’s all for now.  Until next time!