Thursday, December 30, 2010

Ready to leap into 2011

Happy 2011!

What a week we've had! Sometimes I feel unsure of sharing good news because things with Noah change so quickly. I hate to disappoint. The joys of being a people pleaser! So, I may have to retract information in this post at a later time......BUT I HOPE I DON'T HAVE TO!

We've had a liberation in tube feeding. Last week I asked Jared how he felt about trying a bolus feed via syringe. He was all for it so I began to try 250ml feeds 5 times a day with Noah. I went very slowly at first, taking 45 minutes to pour the formula in through Noah's g-tube. We found that 250ml was a bit much for Noah to tolerate so we moved to 6, 200ml feeds. The best part.....we are doing feeds every two hours, each lasting about 20-30 minutes, and are all finished before bedtime. That means Noah goes to bed without a night tube. I have not washed a feeding bag in 5 days. Does that ever feel good!! Again, this might not be the end of bags/pump etc. but for however long it lasts, will take it.

Not surprising to us (but it does seem to throw the dietitian and Dr. for a loop) Noah is still not willing to eat or drink in the morning. Even after being off formula since 7pm in the evening, he won't even take a sip of water in the morning. Like I said, not surprising to us. Most of the professional "theories" given about Noah have been proven otherwise by his choices. All we can do is offer him food and let him decide what to do.

I have a product to share about this week. I am loving Noah's new Button Buddies. They snug up around his g-tube and seem to be much more effective at soaking up leaks from his stoma. We had been cutting make up remover pads for the last 6 months. Despite stopping acid production via medication, the leaking does cause skin irritation. Hopefully this will help his red skin around the stoma. Here is a picture of the set I ordered for Noah - they are fun and colourful!

http://www.mybuttonbuddies.com/index.html



HAPPY 31st BIRTHDAY to daddy!






Pantless at Oma's house due to a med port incident! I quickly changed the port but the pants were done for. You can see Noah's muscle tissue removal on his upper thigh - nasty scar....but the fundo scars on his tummy are pretty hard to find now.



And now, due to popular demand at church this morning...a bum scooting video!


video

Wednesday, December 22, 2010

Christmas and coughing


Our little Christmas bear learning the art of standing!
He only goes into a standing position when we set him up
but he is getting more sturdy as the days go by.


Practicing big smiles for mommy - he is so much fun to be around!



Blessings abound.
Love you already, baby Dykstra peanut #2


Christmas was good. It was filled with Christ-filled moments, time with family/friends and food. It was not a time for sleep, however. We are quite frustrated with Noah's coughing fits which often lead to retching. He will cough for hours during the night and lately the coughing has lead to screaming fits throughout the night. We find this both physically and emotionally tiring. Despite letting him "cough it out" on his own, it keeps us awake as we know at some point he'll retch and need a vent. He also isn't comforted by our presence and cuddles - he really wants to be left alone.

Now, he may have a touch of a cold which isn't helping at present. He has been coughing for months and months. Behinds having a fundo, Noah is on Proton Pump Inhibitor medication which is all supposed to control his reflux coughing.

I've had a nagging suspicion for a long time that his coughing is perhaps not even reflux related. I am not going to stand by and watch him struggle through his days while being told by Dr. after Dr. that he is fine. Or that he is just a "retcher." Jared and I are immensely frustrated by the dismissals we've received lately from Drs. This is no way for such a happy-go-lucky kid to have to live. If there is nothing "wrong" with Noah, why does he cough and scream every time he is venting on a retch? We will be fervently advocating for Noah when the Pediatrician's office opens again in January.

Living without a diagnosis sometimes seems manageable. They can't find anything which means Noah's future is full of positive prospects. But it is quite stressful at times too. I read a statistic stating the marriage failure rate in households with an undiagnosed high-needs child is 90%. Startling. Now, I'll reassure you that our marriage is firmly founded in the promises of God and the vows we made to each other over 4 years ago. We'd had help to communicate when the stress was at the highest level. We are deeply committed and hopelessly in love :-) That being said, I can see where the divides can come when you are wading in deep waters without a sense of what you are wading through.

While we wait, ponder, worry and wonder...here are some things to keep in mind/prayer:

1. Thankfulness that Allie has been diagnosed with a specific allergy and continued prayer for mom and dad as they move forward with their plans to modify her diet. Pray that this is the reason Allie won't eat and that she will have healing in her little body.
http://alliesabnormalappetite.blogspot.com/
2. Pray for Connor and his brave parents as they tread through some tough stuff.
http://www.caringbridge.org/visit/connorv
3. Those who have recently lost loved ones and feel their losses even more during the holidays.
4. Gratefulness for Grandpa D.'s recovery from surgery.
5. Our dear friend Linda who has been diagnosed with cancer. She was truly an angel to us this last year and now she needs our support and prayer.
6. That Noah will tolerate a change to his diet in January. We are planning to go to Pediasure, a full liquid milk-based diet. It has much more calories which means less volume but it also means a huge change for his gut.

With thanks for your care.

Thursday, December 16, 2010

A Letter

I found a really helpful website lately and it contained a letter you could provide to family and friends. It addresses many of the things Jared and I experience with Noah so I thought I would share portions of the letter. I have added some thoughts about Noah in brackets. You can view the full letter and other information on the following website:

http://www.feedingtubeawareness.com/Family.html

Thanks for taking the time to visit our blog and sharing in our journey with Noah's feeding. MERRY CHRISTMAS from the Dykstras. Hugs!


Dear Friends and Family,

We want you to understand a little more about what it is like to have a tube fed child. Because often, it means so much more than our child eats differently than other children. Nearly all tube fed children have sensory issues from multiple hospitalizations, invasive testing, far too many doctor appointments and generally not being able to interact with their environment like other children do (Noah is very sensitive about his g-tube site and also touching his nose and face at times).

Moreover, children with feeding tubes often have them because of having complex medical issues. The irony is that many tubie kids do not look sick. (That is absolutely Noah - we have no known diagnosis). However, because they do have underlying medical issues, they may be at increased risk when exposed to germs. Please understand it takes a lot to keep our kids looking and feeling healthy.

Here are some things we would like you to know:

Getting child care for a tube fed child is very difficult
It is not an option to get a babysitter off the street. Many of us spent time in the hospital learning how to care for our tube fed child at home. There is medical equipment that needs to be learned. Feeding schedules hold little flexibility, so start times are often important. Even those of us with family nearby may not have family members who are willing or able to learn (We have been very fortunate to have many offers for help, as well as 3 wonderful respite workers that we have trained. Oma is also a very willing tube feeder and was so brave to do several NG changes when I needed the help).

If we are going out we need to plan in advance
We need to arrange childcare or for the other parent to be home so that someone can take care of our tubie. Moreover, we need to make sure that whatever is needed (clean medical supplies, formula, medications) are all set up. All that said, we do like to see friends and go out. Like any parent, we might have things that come up that require us to change plans. (Thank you for our many friends who welcome Noah with open arms. We've done many feeds at other peoples' homes and we feel so blessed. Terri even had a hook in her living room back in the gravity feeding days).

Restaurants are not easy for tubie kids. Any child in a restaurant can be difficult, but tubie kids typically can't be distracted by food. Moreover, people tend to stare when you bring a child to a restaurant and do not feed them. (Our restaurant experiences have not gone well; we try to avoid this if at all possible).

We are tired
There are a lot of things that keep tubie parents up at night. There really isn't such a thing as letting a tubie cry it out. Kids with reflux aren't always the best sleepers. We investigate every noise. It could mean our child is in distress, it could mean they are caught up in their tubing, it could mean that their bed is soaked because the feeding tube med port popped open and formula has been flowing into the bed. Moreover, monitors or feeding pumps can and do beep. (We are doing better in the sleep department lately but do respond to every sound Noah makes).

We can also be emotionally drained
It is hard to see tubes coming out of your child day in and day out. It is a constant reminder they are not like other kids. Some tubie kids are undiagnosed. They have a list of conditions, but docs are still looking for the overarching diagnosis. This is very hard on parents. Moreover, kids may be going through a lot of testing, including testing for things that are life threatening. I am not sure my own family understood how stressful this was for me. Even with a diagnosis, there can be worry about what the future holds. Moreover, after having child where a new condition appears every few months, you can feel like you have post traumatic stress...you are just waiting for something else to go wrong.

Our level of empathy may have changed
We understand that it is difficult to for you to have a kid who has an ear infection or an infant who needs shots. But, we may not feel the same level of empathy as other parents. We have seen things parents shouldn't have to see. Many of us shouldn't have seen our kids intubated and connected to so many wires you aren't sure how to pick them up (if you are allowed to pick them up). We have exposed our kids to anesthesia, barium, x-rays and prescription medications. We have had to hand our kids over to surgeons. (Over the last year we have repeatedly held Noah down for procedures, subjected him to invasive testing and it has taken a toll on all of us).

We don't expect sympathy or necessarily want sympathy from you
We love when people get that this is hard and acknowledge what we do for our kids. The vast majority of us feel like any parent would step up and do the same thing if their child had medical issues. We don't particularly feel that we were chosen for this based on super special abilities. Everyone can do this, but thankfully most people do not have to. Rather than telling us how bad you feel for our child or for us, try to focus on an accomplishment or acknowledge the challenge. It is great that [Child] is handling this so well. Or I know it must be hard on you [Parent], but you are doing a good job. (If you don't know what to say, that is okay too. Sometimes that is better than saying something well-meaning but misplaced. We understand the need to see progress in Noah's feeding, but Jared and I have come to a place where we accept that tube feeding is part of our lives and will remain that way indefinitely. When we share our difficulties, it is simply to be honest about our experience, not to make someone feel badly for us).

It may seem silly to you, but it might be cause for celebration for us if our kids eats even a small amount
A tablespoon can be a reason to jump for joy. A successful new food may prompt a facebook post. We celebrate these little victories because it gives us hope that one day our child might be able to eat and not have to rely on the tube. (Noah is not taking any calories by mouth right now so our celebrations in oral feeding are few and far between).

Some of our kids receive government related benefits. It is because any child on a feeding tube is legally disabled and they are entitled to certain services. Please don't think we are milking the system or are lazy.
Specialized formulas can be incredibly expensive. Moreover, some insurance plans do not cover them. Some medical supplies aren't covered by insurance at all. Moreover, many tubie families have to have at least one parent who is home. There are few jobs that have the needed flexibility that is often needed when a child has feeding issues or other medical complexities. (We are very thankful for the disability assistance provided to us for now and find it a necessity to get out and recharge both separately and as a couple).

Please, please don't:

Feed any child something without the parents' permission. This is even more true for children with feeding tubes. They may not know how to swallow correctly. There may be certain foods that are restricted from their diet. They may not be able to tolerate food textures and may gag or vomit. They may have severe food allergies. PLEASE UNDERSTAND, WE WANT OUR CHILDREN TO EAT. WE WANT THEM TO EAT SAFELY. If trained professionals and specialists have not gotten our children to eat, you will not be able to during the family gathering.

Compare what a child with a medically complicated history to a perfectly normal child who has never had food hurt them.
We appreciate that your children or others in the family are wonderful eaters. We just want people to look at what our children can do and what they have overcome. If all you know is food hurts, it is a huge accomplishment to tolerate small amounts of food and have it not hurt.

Ask me when my child is coming off the tube!
The real answer is that a lot of tubie parents do not know. Trust me, we are all anxious for it, too. But, sometimes situations are complex.

Remind me of the "what ifs"
Like any parents, sometimes we wonder if an outcome would be different if we had done something different along the way. That said, like most people, we would prefer not to be reminded of these.

And most importantly, to keep our kids nourished, it is all worth it.
Thank you.

Monday, December 13, 2010

Joy


"Easy Rider" - the grumpy version
(but the trike is an awesome gift from Oma!)

I've always been a big fan of being "real." I like it when people share deep stuff with me. I'm actually not very good at small talk for that reason. I don't always filter well if I'm stuck in a surface level conversation. Sometimes that means saying stuff that is hard for some to hear. Sometimes it means sharing stuff about Noah's life that is hard for me to say.

I just want to thank all of you for reading what was hard for me to write. And for being so encouraging. And for listening and not trying to "fix" it. For calling and letting me cry. For the flowers (G.V.) The hugs without conversations. Nobody seemed surprised to hear that life was tough. No one made me feel like I had to make it better. You have walked with us this last year. You know many of our deepest wounds and greatest joys.

We had a good weekend. My house did not get completely cleaned as planned. Ditto on calling people I had planned to. Noah retched a lot. Noah tried food on Sunday but refused all day today. A lady was all annoyed with me at Chapters today because I was venting a retching Noah (ie. sounding like he is chocking and he is beet red) and thus blocking an aisle of books with the stroller. Not kidding, she asked me to move. Here I am holding a syringe full of formula and encouraging Noah that it is going to be okay. So I told her that I had to attend to my son for a moment and I would move shortly. SHE ROLLED HER EYES. Seriously. I blew the formula back down his g-tube, looked up at her and said "the aisle is all yours. Merry Christmas."

I left that moment with a life lesson. We all could use a little more love. We need to enjoy life a little more. We need a bit of patience. And some people need to chill out. Maybe we could even be a little joyful?

I'm not overjoyed with Christmas. This is a huge disappointment for me as I thought I was gonna live large this season. With the crisis of last year, I thought I'd be abounding in joy. As the weeks have past, that hasn't happened. I cried everyday. Some of the tears were of joy because my son is so joyful. He dances to every carol, claps when I play the piano and smiles at everyone. Church has been so meaningful and challenging at the same time. We've been invited to bring our pain and sadness with us each week. I think of the people I love who are hurting. I've been missing the joy I thought I'd prayed for.

Well, my dear friend Geraldine (http://www.caringbridge.org/connorv) said it really well - your life might not be filled up and bubbling over with joy but you can be joyful while not "faking" it. The struggle and joy can live together in the peace that Jesus' arrival gives us.

Here is a story that was shared at our church yesterday (http://www.emmanuelcrc.org/). I know it is kinda long but it had such an impact on both Jared and I. It is adapted from a sermon by Rev. Diane Hendricks.


It's the most wonderful time of the year!

Only it's not.
Not for everyone.
Not when there is an empty chair at the table.
Not when your body is ravaged with illness.
Not when the depression is too much to bear.
Not without her voice joining yours on the Christmas carols.
Not when you feel all alone even in a crowd.
Not when you are not sure you can even afford the rent or mortgage, let alone the presents.
Not when they are trying their best to get the best of you.
Not when another Christmas party means he will come home drunk again.
It's the most wonderful time of the year? No, it's not.

And trying to smile and say Merry Christmas is more than difficult. It's pretty near impossible.

C.S. Lewis once wrote: "No one ever told me that grief felt so much like fear. I am not afraid, but the sensation is like being afraid. The same fluttering in the stomach, the same restlessness, the yawning..."

It's the most wonderful time of the year!

Only it's not.
Not after he has died.
Not after the doctor gave you the news.
Not after they told you they would be downsizing.
Not after the tsunami, the hurricanes, the earthquake
Not after 911, when there is so much violence and destruction in the world.

In truth, it has never been the most wonderful time of the year. Certainly not in the days surrounding that first Christmas so long ago. The story of the birth of Jesus is not to be told with a jolly voice and a merry ho-ho-ho.

It is the story of a teenage girl, pregnant with a child that is not her husband's.
It is the story of a child born in a dirty animal stall.
It is the story of a family of refugees who had to flee their homeland so that their child would not be killed.
It is the story of one sent into the world in peace who was condemned to death.
It is the story of a light sent to shine in the darkness, which the world snuffed out.
It is the story of God's never-ending, self-giving mercy which was rejected and condemned.
It’s the most wonderful time of the year.

It's the most wonderful time of the year!

Yes! it is:

If we forget about the tinsel and the trees.
Yes, it is, if we forget about the holly jolly tidings.
Yes, it is, if we forget about the presents and the ornaments and the trappings.

And remember.

Remember the story.
God exalted Mary, who was alone and afraid among woman.
God revealed to Joseph, who felt disgraced, his plan to save the world.
Though the world was dark, God sent the light of life to shine.
Though the lowly were imprisoned, Jesus set them free!.
Though the blind wandered aimlessly, Christ gave them eyes to see.
Though the lame had been rejected, through the Holy One they were made to leap and dance.
Though the deaf were confined to the silence, the song of life unstopped their ears.
Though the sorrowful grieve, God wipes away our tears.
Though we were alone, in Jesus Christ, Emmanuel, God is with us.
Though the human race rejects God, the Almighty embraces us.
Though the world crucified Christ, God would not allow that to be the last word, and gave us the sure hope of the resurrection.

It is the most wonderful time of the year, not because we have to be cheery and happy and merry.

But because we don't.
We can have heavy spirits and shattered dreams. Broken hearts and deep wounds.

And still God comes to be with us
To comfort us.
To redeem us.
To save us.
To restore us.
To empower us.
To strengthen us.
To grant us peace.
To be raised for us.
To hold us in the communion of saints with those whom you have loved and lost.
To store our tears in his bottle.
To offer us eternal life.

It is the most wonderful time of the year. For Christ is born, Love has come; God is with us. With thankful hearts, let us ponder our Savior’s birth in Bethlehem, remembering his promises, that in the fulfillment of time, God will live among us and wipe every tear from our eyes.

Thursday, December 9, 2010

Get over it already.

I have to be honest: I've put up a good front lately. I read over the last few blogs I wrote. Fun. Birthday. We're coping. Yea, right? Well, I'm not being very real. I know I'm going through a phase. I know the tears will dry up again soon. But, in the meanwhile, I might as well be honest.

How I feel: frustrated, tired, weary. I'm not grounded like I have been at times in the past. Noah's has been tube fed for one year. 6 months by NG tube. He has had his g-tube for just shy of 6 months. I've gone through each day lately counting down the minutes of each tube feed. Oh, no. Is he retching or just coughing? Should I vent or wait and see where this goes? If I give him a feed now, will he have time to settle the food before he needs to sleep. Oh no, he just went down and slept for 5 minutes and now he's coughing. Why is his skin breaking down at his stoma again? What am I doing wrong? I need to start a feed but we have an appointment. Should I feed him in the car even if I can't vent? Can he really handle dairy? When do we start trying a full liquid diet? Should I considering making him a homemade blended diet? How in the world can they charge so much for his formula? He is starting to fight his feeds: head-butting or hitting the venting syringe when I'm letting air out. How do I teach him to respect his tube while at the same time understanding his developing feelings towards it. How am I going to feed two babies in a few months?

So, should I buck up? Get strong? Keep it together? Remember those in worse off situations? Pray about it? It would be so much worse! He looks great. He looks so healthy! Just wait, he'll start eating you out of house and home someday. This to shall pass. When God closes a door he opens a window.

Oh boy.

Lots of kids are much sicker than Noah. Lots of parents are much more worn out than we are. But, honestly, it is not easy having a child like Noah. It makes my head hurt that he has no diagnosis, no direction, no further specialized physician care. Each day seems a lot like the one before. I am really trying to make each day with Noah special and just like any other kid, but it is a tough slog.

But I appreciate your encouragement. When you ask how we are really doing. When you say "I can't understand what you are dealing with but we love you and want to support you in the best way possible." When you drop a note or phone call, even I don't respond right away :-) I am really learning how to build others up in a supportive way (I hope I don't lose progress on that with this blog entry).

I have a like/dislike relationship with the tube. I'm not unusual in that respect from other tube feeding parents. We need it. He's getting his nutrition. He's growing. But I feel like we just continue on, the same routine day after day, hoping that someday Noah will start eating or be able to tell us why he can't/won't. I'm doing it. Day in. Day out. I don't have to like it. I give myself permission to not like it.

I'll get it over this phase. I'll cease with the tears. Soon.

Dar

Thursday, December 2, 2010

Bolus and birthday


First birthday cake: Noah's Ark
Noah, you are pretty lucky to have your Auntie Julie-Ann (pastry chef)
make your birthday cakes (and so is your mommy!)


"Happy Birthday to you!" You love your big cousins!


Did you have fun destroying the cake, Noah?


And look, a very special surprise party with your special buddies
and a delicious cake made by Auntie Terri! She knows how much Noah
likes orange and the cake was covered with fun plastic bugs.



Birthday - round two!

Noah had a surprise party thrown by Terri, Heather and his two good buddies. That was super special and really fun! Then my family came over this past Sunday to spoil Noah with lovely gifts and enjoy dinner/cake together. I treasured every moment! Noah covered himself in cake and may have tried a little lick or two...it is always hard to tell with him! His older cousins loved holding him, playing toys, helping him with his bath.

Bolus Feeding

We are now well into our attempts at only giving Noah bolus feeds. He hasn't been on a continuous night feed in over a week and for that, we give thanks. That means we don't have to get up to deal with the pump through the night (wheee!!!). It is hard to comment on Noah's reaction. He is definitely sleeping better through the night (double wheee) but his mornings are tricky. However, he seems to have moved his coughing spells to between 6-7am rather than 4-6am which is good for everyone.

Our new schedule looks like this:
Day feeds:
8am feed 220 ml (one hour)
11am feed 220ml (one hour)
2pm feed 220ml (one hour)
5pm feed 220ml (one hour)

Night feeds:
7pm feed 220ml (one hour)
9pm feed 150ml (one hour)

It took a few days to be organized during the day in order to get the feeds in. We are up one feed in the day and the volumes are up to. Noah is retching intensely but we just stick close to his side and vent as needed. Those retches are terrible but Noah reacts as he always has: he stops what he is doing and then resumes once the episode has passed.

It will be many months of transition, slowly raising his speed and volume of feed but it is a step in the right direction. Four hours a day of feeds is a lot for Noah but he is managing (and so are his parents).

Prayer requests - if you are the praying type, please join us in keeping the following things lifted up in prayer:

1. Grandpa D. and his recovery from surgery. It has already been a painful week and healing takes time. Pray for relief from pain and patience in the recovery process. Please pray for Grandma too as she is the caregiver at home and those of us who've done that kind of "stuff" know the stress it can bring.

2. I've been following a few blogs as of late and both these little people need our prayers:

Little Allie
http://alliesabnormalappetite.blogspot.com/

Sweet Mason
www.masonjosias.blogspot.com

I encourage you to take a look at these blogs to see the journey of other kids with g-tubes (and other complications).

3. Keep our friend Connor in mind in prayer. You can see his story and read his momma's open and honest journal at:

http://www.caringbridge.org/visit/connorv

4. With Christmas "stuff" all around us, please remember those who find this a lonely or sad time. I am challenging myself to have my eyes "open" this year to those who might be struggling. Last year, there were many people keeping an "eye" on us in our crisis with both Noah and my health.

5. Pray of thanks that Noah is drinking a few sips of water every day and now wants to have a cookie whenever he sees cookie monster on Sesame Street. Bonus: once in a while, he'll take a little bite or two. Every act of oral eating gives us hope that in the years to come Noah will learn to enjoy food and his body would not react with retches when he tries to eat.

BLESSINGS!

Dar, Jared & Noah

Thursday, November 18, 2010

One Year


My Birthday balloons from Mrs. Kristina! I'm watching my favourite show and taking a tube feed. I have to do that 4 hours everyday but I'm a good sport about it all!



My mom doesn't seem to go out much when this white stuff (I'm told it is called "snow") falls and the temperature is -30c. I don't mind and just watch all the action out of the living room window.


Dear Noah Pieter,

It is hard to believe that a year ago you came into our lives and took over our hearts! You've had to put up with rookie parents (sorry buddy) and a lot of things that make your body feel yucky. Guess what?? You have done all of that with a smile on your face - that's why we call you our resilient boy!

You've had a great adventure over the last year. You have learned that life on earth can be a wonderful place while at the same time filled with difficulty. Nothing has held you back. Not all the tests, the NG tube, surgery, a g-tube, complications, and those awful retches you have each and every day. You blow us a kiss when the retch is done. It makes me wonder if you do that to make mom and dad feel better? It wouldn't surprise me if you did. I think you realize it could be so much worse and thinking of our friends we've met in person and online who struggle so much more than you do (we love you, Connor!!)

You have smiled your way into the hearts of countless people - family, friends, medical and para-medical professionals. Everyone is happy to see you. Even when you have to do less fun things (like 4 hours of day feeds) you are okay with it, especially if Sesame Street is on the laptop! We are so proud of you. You've come a long way from needing to eat 24 hours a day. Wow!

Now we start a new year with you and we are so excited to see what you'll learn to do. We will learn right along with you.

Thank you for being such a wonderful little boy. We love you so much, Noah.

Love and huggies,

Mommy & Dadddy

ps. Thanks to our Ontario family for the little birthday party we had a few weeks back and a big thanks for all the birthday wishes we've been receiving for our little blonde guy. We feel the love, that's foresure.

pps. Please pray for Grandpa D. as he has a big surgery this coming week and needs our prayers for healing, comfort and peace.

Monday, November 15, 2010

Grief

This blog is primarily about Noah and his journey with tube feeding. But it is also about life in general and today our hearts are heavy for my brother-in-law, Rob, and my sister, Julie-Ann and their two boys. Rob's dad, known to us all as Nonno, passed away and into the arms of His Heavenly Father this morning.

I, and subsequently Jared and Noah, have been loved and cared for (and fed) by Rob's parents over the last decade. Even amidst their own pain of Nonno's cancer this past year, they have been so kind and generous to Noah. I would ask you pray for the whole family and particularly dear Nonna as she has lost her partner of over 50 years.




I Will Rise (Tomlin)

There's a peace I've come to know
Though my heart and flesh may fail
There's an anchor for my soul
I can say "It is well"

Jesus has overcome

And the grave is overwhelmed
The victory is won
He is risen from the dead

And I will rise when He calls my name

No more sorrow, no more pain
I will rise on eagles' wings
Before my God fall on my knees
And rise
I will rise

And I hear the voice of many angels sing,

"Worthy is the Lamb"
And I hear the cry of every longing heart,
"Worthy is the Lamb"

Friday, November 12, 2010

Wedding fun!

Hello!

Our thanks for all the wonderful feedback from our last blog. Jared tells me we got 1, 1oo hits last month - that seems crazy to me but shows how many peeps care about Noah! We've felt pretty run down this last week, so it was of real encouragement to us.

First up......Noah of course!

Noah was supposed to have a mickey (skin level button type g-tube) inserted this past Wednesday. We were mighty nervous about the removal of the PEG (his current style of tube) but also excited for the prospect of our monkey having just a flush button on his tummy. When we arrived at clinic, I quickly felt overwhelmed throughout the teaching. Noah still retches often, and does so with vigor. With a mickey, we would have to change his feeding line out for a venting line. By the time we do that, we may have missed the retch and the chance to vent. Not releasing air puts the fundoplication surgery at risk.

We must have looked overwhelmed but at that point the nurse asked how things had been going lately. Now, for the most part I consider us to be realistic about Noah, using respite to ease the strain of his medical needs by getting out and taking breaks, we are doing pretty well in the sleep department and even pregnancy has been manageable. But at that moment, I looked at Jared and tears began to pour out of my eyes. We both said "not great." Now, let me clarify. Noah is GREAT. Noah is developing normally. Noah is slowly gaining weight. Noah is a generally happy and smiling little guy. Noah likes a good joke, usually meaning his parents acting in a ridiculous manner. Noah is making progress on taking faster feeds. BUT Noah is 100% tube dependent. Unable and unwilling to eat or drink much by mouth despite several attempts a day with all kinds of different foods. Noah retches, day and night. He has no diagnosis. All of "this" is what makes us say not great. It is hard. It doesn't seem to change or improve all that much. We know we have it so much better than many but in that particular setting, we both felt weary.

At that point, Dr. Wong arrived and after being briefed by the nurse said he could change the tube but we would probably come back in a week wanting the PEG put back in. Accordingly, we decided then and there to leave the current tube in. Thankfully it isn't showing any sign of wear (cracks, leaking etc.) so it can continue to work for Noah.

And now...the main event...ANIKA AND ANDREW'S WEDDING

Congratulations to Auntie Anika and Uncle Andrew who had a most spectacular wedding! We had a great visit, sharing in family time, watching M and Noah (the cousins) play with each other. M shared all her toys while Noah wouldn't give them back! Haha. It was all so special. Thank you again, Oma, for putting up with us and taking such fine care of Noah. Thanks too for having us at the farm, Grandpa and Grandma.

We wish the newlyweds much happiness and blessings for their life together.



Reading with Grandma in the sunroom at the farm

Noah's with his only Great-Grandma and Great-Grandpa

Mr. and Mrs. Andrew and Anika!

Noah and mommy

M and Noah (one sharing, the other taking the duckie :-)
Jared and his brother Joel (one of his brothers!)

Saturday, October 23, 2010

New life and Ontario here we come




The double wave


Super silly guy

So we, like many of you, have peaked our heads up again after the fall flu. It spread rapidly through our church community, and then we kindly gave it to my family. Sorry. Of course super-star Noah did not exhibit any vomiting - what a handy surgery that fundoplication is :-)

Noah had a tough 10 days. His "sore" turned out to be a recurring infection on his tube site. Poor guy has probably had this for weeks and weeks. It is frustrating because the treatment for a sore actually complicated the infection. It kept getting misdiagnosed so I am so happy that the ped. was able to start him on meds. The meds. caused severe runs, making Noah miserable. It reminded me of the week following his surgery when he didn't smile for days. Finally, he started to adjust 7 days into the meds. We are finished the course of antibiotics and though some granulation tissue is starting to form on his site, the worst is behind us. Just in time for our trip to Ontario. Whew. We have to treat the granulation tissue still this week but hopefully we'll have no big issues when we are at the farm.

This week, I've been pondering the idea of new life. Brace yourselves people. Jared and I are humbled, awed, nervous and joyful to announce a growing life inside my body. God willing, baby #2 will join us in May. Yes, Noah will be 18 months. Yes, we are sorta crazy. I know lots of you folks have children close together in age but our little tube feeder makes things a little unpredictable so we will have our hands full. But we figured we'd see what will unfold for us in our journey of raising kidlets. Obvious question: what if "this" all happens again. Answer: then we do it all again. I think every single one of us can play the "what if" game when we move forward in life. When we take risks. When we challenge ourselves. There are no guarantees. I'm not seeking a "way out" but a "way through." Life is tough in many ways. I knew that before Noah came into our world. But I understand it on a deeper level now. I also understand how to move forward. Thanks, Noah, you have blessed me so many wonderful lessons.

I have to thank a few trusted friends who have been praying for me about having another child. For many months I was sure I wouldn't be able to do it. But I knew I needed help in discerning what God's plan was for our family. These amazing women walked through the questions and struggles I was having. I don't take this hesitation lightly. I know of many paining to have a child, or those have had to go to great lengths to bear children and perhaps I sound selfish and small. Nonetheless, for me it was a real journey. I feel peaceful now.

The next obvious question, considering my pregnancy with Noah, is that of nausea. Oh, it is on. In fact, this time even worse than with Noah. BUT my mental and emotional state appear to be stronger. The evenings from 4pm onwards are by far the worst. But Noah drags his suitcase and I drag my bowl around after him and we make it work. Many of my momma friends feel me right now. You've been there, many of you throughout your entire pregnancies. So, I certainly do not feel alone! We are used to having to modify most activities in life due to Noah and the same policy applies now to me.

Next blog will be a HUGE CELEBRATION of Anika and Andrew's wedding. I'll be sure to post lots of pics. Thanks for reading, for sharing your life with us through cards, emails, coffee visits, phone calls etc. It all is very meaningful to us.

ps. a special thanks to Jonah F. who graciously shared a ton of books for the airplane ride to Ontario. Thanks buddy (or should we say duckie?) Also, a thank you to the "K" family for the stunning Noah's Ark table and chair set. You so spoiled Noah and we know he'll enjoy this beautiful set for years to come. I have personally never seen such beautiful artistry on children's furniture! (see photo below)


Tuesday, October 5, 2010

Thankful

What Can I Do (Paul Baloche)

When I see the beauty of a sunset's glory,
Amazing artistry across the evening sky
When I feel the mystery of a distant galaxy
It awes and humbles me to be loved
By a God so high

Chorus:
What can I do but thank You,
What can I do but give my life to You
Hallelujah, hallelujah
What can I do but praise You,
Everyday make everything I do a hallelujah
A hallelujah, hallelujah

Hello fine readers!

This is a day for giving thanks. I love the Paul Baloche song above that reflects on that topic. I hope you had some time to check in with yourself and take stock of the goodness that surrounds you. And if this time was a lonely or sad day, I pray that you won't be overlooked in your sadness.

I've been thinking about suffering lately. Not that I think I have it so bad, I really don't. I have many around me right now on their knees with sadness and pain. You will have your own list of sadness or challenge going on in your life or in the lives of those you love. What I find so interesting is that when we find ourselves suffering, we can be embarrassed by any sign of struggle, weakness or tears, and instead hide our trials under feeble smiles. Instead of bearing each other's burdens, we so often pat each other on the back, mumble, "I'll pray for you" or "thinking of you" and then walk away and forget. I've been guilty of this time and again. I've had to ask for forgiveness often.

I have learned from Noah's story that putting on a happy face undermines my true identity. We should not find suffering an embarrassment. Sharing lament can deepen your relationships, even transforming sorrow into praise. I have such a hope after the last 10 months that you can be deeply sad (or in case of depression, a feeling of emptiness) and still survive. God doesn't condemn emotion. I am reminded when I hear stories of others hurting that I am not the only to have suffered in life. I am also reminded not to shut down, especially when I'm in pain. Simple? Not at all. But like all things, a journey.

Jared and I are surely grateful for the blessings each day brings to our life with Noah. Sometimes the blessings are not straight forward. To that end, this past week Noah was discharged as a GI patient. It was hard to hear that there is simply nothing they can do for Noah. And then in some ways, it was good to know they weren't willing to subject him to more invasive testing. Time will tell us much about Noah in terms of his potential allergy to milk/soy, his ability to take faster feeds, if the Neocate is necessary etc. We have decided not to yet test Noah's sensitivity to milk. We'll wait perhaps 6 months so that we do not subject him to multiple attempts at switching his formula. That act alone can cause complications, so it was advised not to attempt it more than once or twice.

I give thanks that the Dr. agreed with us about Noah's medication dose. We dropped it in half and although I'm wondering if he is experiencing some discomfort, the side effects of this drug have always concerned me. We'll give this a trial run and see if he can sustain a lesser dose.

We were also pleased to know we will continue to have the help of our OT (feeding issues), Speech Pathologist (important for tube-fed kids), Home Nutrition (supplies, skin care advice and treatment), Dietitian (helping to calculate Noah's formula requirements) and Home Care Nurse (weight and general help). This group of wonderful women have provided such practical help through the last year.

Unfortunately Noah has developed yet another sore under his bolster on his g-tube. Grrrrr. So begins the 2-3 baths a day to clean it and keep it well creamed. The trouble is, he is getting stronger and more sure of himself which means he isn't as agreeable to having me turn his bolster, clean the tube site and apply cream and gauze. Really this is minor but it just reminds us that Noah's care isn't always simple. THANKFULLY, we feel confident in our ability to help him and care for his skin. That same attitude applies to retches: it is so hard to watch but we have the tools to at least give him some relief by venting the tube.

Here are some pictures of our sweet boy.....he is loving his first fall experience and we enjoyed a great hike with Oma this weekend at Heart Creek. Lots of lovely memories.

From our household to yours.................happy thanksgiving!!









ps. Here is a picture of our host family in Abbotsford. That's a lotta blondies in one room!! Thanks again, Susan & Jeff! Friends are great.





Thursday, September 23, 2010

Planes, trains and automobiles

Hello!

Its been a busy month! I've managed two trips, one to Invermere by car (thank you Terri and Jen) and Abbotsford by plane (thank you Susan, Jeff, E, Princess A, little a, Pam, Nolan, L and L). As a family we were able to drive to Mara Lake (thank you James, Shannon, J and S). It was so nice to see Noah easily adjust to different places and sleep situation. He did really well and only encountered a few tube related challenges.

Lately, Noah is having a blast learning to use his arms to pull himself around. He has no interest being on his tummy so he simply pulls himself to the nearest fun looking item. Usually, it is his suitcase :-)

In this picture he is working his way around his room, trying to avoid the carpet as it slows his movement down.

This is the proud moment of opening his clothing drawer - oh look, its the little suit he is going to wear to his Auntie Anika's wedding in a few weeks. That is our next travel, the biggest yet. Thankfully, Oma is going to fly on the plane with us to Toronto and help us out for a few days so Jared and I can support Anika and Andrew and enjoy the wedding celebrations! We will also have the delight of finally meeting our niece. I cannot wait.


This picture was taken just before he took out all of mommy's pots and pans....Noah, you are strong!!


Here is our favourite activity. Lately Noah has taken to drinking a bit of water from a Tupperware container while enjoying his bath time. It is really encouraging. He is also willing, from time to time, to bit a cookie or two. Even though he'll often spit out the contents of what is in his mouth, it really gives us hope that his aversion is not getting worse! I think his 7 teeth are helping us progress in trying different textures.



As for tube feeds, I am SOOOOO HAPPY to report that bolus is going well. We need 4 hours in the daytime to get in Noah's feeds, so he is actually off his pump for a few hours a day. He is and will continue to be feed for 13 hours at a low rate overnight. It is so nice to see him able to move around without his tube dangling behind him. We will keep working at slowly increasing the rate in the hopes of doing 4, 45 minute feeds during the day. Retching continues and is quite intense when it happens, but the frequency somehow seems manageable.



And now, a small taste of our travels. Here is L showing off her stickers. Unfortunately, I did not remember our camera and so I've had to beg for a few off Pam's camera. Hopefully I'll have a few more pictures to balance out the story - I had 2 host families!



Noah loved hanging out with new friends, trying out new toys and generally smiling his way into the homes of my dear friends. He and L were busy getting to know each other in this picture. Noah would hang on to the edge of the rocker and pat the baby's hand. Now, if girl L from above got in his way, well, he wasn't as kind and would pull her hair - oops.

His new favorite activity - sitting in a soft chair and sliding out......repeat cycle! Thanks L for sharing your chair with Noah. Plus, it is Thomas so my title of the blog actually has some connection. I know, weak :-)


Take care!!

Monday, September 6, 2010

Tube Travels

We were able to take Noah to Mara Lake this past weekend. Thanks to our friends, the "D" Family for the invitation and being such excellent hosts. We were very well cared for. Noah was a great little car traveler, even sleeping for a few hours, all the while he was feeding through his g-tube! It was a really special time for our little family.

I thought I should give a quick update on life right now.

Tube Feeds

We believe Noah is feeling better on Neocate formula and from being fed a small amount each hour around the clock (continuous feeds). He went from retching 30-40 times a day to between 10-12. A HUGE ANSWER TO PRAYER!!!! We are now working on building a bolus feed where Noah would take a feed in one hour, and have one hour off. The exception is night time where he will continue (for a LOONNNGG time to come) to take a continuous feed each hour through the night.

We have been working towards a bolus for 2 weeks now and have managed to raise his rate by 30 ml an hour. That means in another 20 mls, Noah will be taking a one hour feed. This is by no means less work for us, however, so once the one hour on, one hour off is established, we will push on to try for 3 hour feeds. Hopefully within another 2 weeks we will be at hour on, hour off.

We will see the GI Dr. in October and that may just be the final step in Noah's medical investigations. Why he couldn't and then wouldn't eat might may always be a mystery, aside from his severe reflux. Noah's genetic, metabolic and neurological tests are clear. Somedays, the hardest part of caring for his medical needs is not really knowing what the underlining issue might be. So we accept what is, what a fine fellow our Noah is, and enjoy our days to the best of our ability.

Oral Feeds

Noah has had quite the menu offerings lately with french fries topping the list! He is a very social guy, enjoying sitting in his high chair, playing with his food, feeding mom and dad and showing off at feed clinic with his OT. The only part he isn't so excited about is.....well, actually eating and drinking or putting food in his mouth. We aren't surprised by this and continue to keep our long term (read: years) plans in mind with each meal. First, keep food times positive and fun. Second, Noah makes the choices about when/what/how he will eat. Third, keep offering him food, throwing it away without guilt and trying again at the next meal.

Sleep

Noah has a mixed bag of night sleeps. He is whimpering much less (ANOTHER HUGE ANSWER TO PRAYER) so when he is up it is usually for a short period of time. I was up 4 times last night with retching or crying. We definitely feel like we are out of survival mode with sleep and are able to get a few good hours in a row which is very refreshing. We've had a few incidents of the tube opening during the night which makes for a smelly bed and baby, but we are learning how to avoid this with loads of tape. It stills make us nervous to have a chord hanging over the crib rail attached to our son, but we trust that the stiffener sticks we are provided with from Home Nutrition will keep him safe each night.

Grace

Tube feeding has become our normal. We modify the regular baby "stuff" so that it works for Noah. We manage the extra stress and costs involved in Noah's care. We are more than just existing and instead trying to find ways to care for others in similar circumstances. I (Dar) am completely medication free. Many prayers have been answered. Thanks be to God.

Our sincere thanks for taking the time to read our blog, write notes of encouragements, have playdates, ask questions about Noah's feeding, email a comment....it really makes such a difference in managing the day-to-day. Blessings.

Here are a few pictures from our weekend travels:



Practicing drinking from a cap with mommy!


Trying out some boating


Bluey (our suitcase) goes just about anywhere


Just before Noah fell asleep on the boat ride


On the shores of Mara Lake

Friday, August 27, 2010

Grandparents are special!




Dear Grandpa and Grandma D:

You drove all the way from your farm in Ontario to my house in Calgary. That was really special. Thank you for spending so much time with me: going to the zoo, taking me and my parents on our first big drive to the mountains, helping my parents get organized for a big party, reading me stories, teaching me to say "ahhhhh!" You were very brave when I retched and helped me to feel better.

I love you. Hugs and kisses,

Noah

ps. Here are some pictures and videos I thought would be fun to share with our readers!



On no: in this video with my mom I am having fun and then just about to retch!


video video video