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