Happy Birthday to Oma and Grandma!

This week we celebrate 2 important birthdays.  Grandma D. in Gorrie and Oma V. in Calgary.  In celebration, here are a 3 videos of Noah....the lighter side of life.

Thanks Carrie, Kristina and Katie for taking care of us by providing meals this week.  My mom is back next week from her fabulous trip.  We are so happy she got away and had a wonderful break.  

Dr. Seuss:
Today was good. Today was fun. Tomorrow is another one.

Celebrating 5 months

Noah........be baptized! 

I hadn't yet posted any pictures from Noah's baptism which took place at the beginning of March.  Thanks so much for those who were able to share in that special day....especially Mom and Dad Dykstra who came from Gorrie, Ontario. 

 Look, Mom and Dad - I'm 5 months old! 

Noah is 5 months old this week - wow!  Well, peanut you have come a long way from those days in the hospital with tubes attached everywhere.  Our little guy is full of smiles and a bright personality.  I have to laugh because as I'm typing he was jumping in the jolly jumper and his tube popped out of his sleeper and Noah ended up dancing all over his stomach contents - oops!  He wasn't fazed by the fact that his food was dripping out of his tube!

We have 2 weeks of full time help from Evelyn left and then she will come 3 days a week until the surgery.  Please pray that I will be able to manage well on a daily basis.

Surgery update:  

Noah is scheduled for a G-Tube, Nissen Fundoplication (Laparoscopic) and Muscle Tissue removal on June 15.  The surgery will take approximately 4 hours.  We hope and pray his reflux will get better in the meanwhile so that the "fundo" may not be necessary.  However, we are hopeful that this will be the change in Noah's life that takes away his label of "failing to thrive" (which he is not by the way!!) to thriving all the way!

Thank you!!

Meals again have been so helpful.  Thanks to Krista, Carrie, Terri, Jen, Gloria, Glynis - special thanks to Terri for organizing.  It was also nice to see Aunt Jenny, Reuben and Joshua yesterday - thanks for stopping in!  My mom is having a super time on her trip and feeling very refreshed - we'll see her again in about a week and a half. 

Congrats to Rob and Mel who had their second son this week - Lucas (I particularly think its a splendid name!)  I had a quick chat with Mel and she did very well and they are settling in at home. 

I was able to attend coffee break this week as well as go out with some girlfriends last night.  I also had a special spa experience with Julie-Ann - thanks to my Gr 5 class last year for the gift card.  I finally used it and was able to share it which was even better!!  Petra also helped out yesterday with a feed and I trained our new friend Kristen to help with Noah as well.  So we should have some great help when Evelyn is gone (gulp).

Until Next Week: 

Noah has several books he adores - one is called "God Loves Your Nose" which is a hand-me-down from his older nephews (I think I bought it for one of them years ago).  I love the fact that it focuses on the nose....the part of Noah's body we have to keep him from playing around with too much.  I always remind him when I say "No, thank you Noah" and pull his hands away that his nose is so special it needs protecting.  I'll leave you with the last paragraph:

"It's true, we all are special, 

And as your body grows

Just know that God, who made you

Loves you...nose to toes!"

Lessons in Tube Feeding

One question we are often asked is "what is it like tubing feed Noah."  I never imagined I would have the answer to that question but since I have turned into a bit of a nurse lately, I'll give our readers the run down.

The NG tube is changed once a week.  We begin by preparing all the tapes/tube and then remove the old tube from Noah's stomach.  He really does not enjoy that!  Then we wrap his arms and one person holds his head so that the tube placement is quicker.  We measure the tube, lubricate it and then insert it, trying to avoid curling it in his nose, mouth or getting it in his lungs.  

At almost every feed we attempt the bottle.  Go for it, Noah!  Lately, this has been a tremendously frustrating process.  Evelyn, the calmest woman I've ever met, feels saddened by the recent lack of bottling.  But we just keep making it a happy time, give Noah a chance to try and accept what he does.

Then we need to check his stomach contents.  This is to ensure the tube has not moved from the stomach.  This is the crucial step when giving anything into the tube - be it formula, medication or water (for flushing the line). 

Here is Noah watching mommy check his stomach contents.  We attach a 10cc syringe to his tube and pull back until I see something from his tummy making an appearance in the line.  Sometimes it is difficult, especially when the tube gets stuck on the side of the stomach.  We need to see contents before we continue so we do what is necessary - push 5ccs of air in to move the tube or hope that Noah will take a bit by mouth so the tube can move.

Then we attach the Kangaroo Feeding Bag which runs the drips in via gravity.  The feeder (Jared, myself or Evelyn, or at times a nurse if we have respite) then control the speed of the drips with the roller clamp.  In the following picture we see Noah and his Evelyn getting settled in for his meal.  You can see the bag hanging from the wall.  Noah likes to sleep for a while which really helps! Then we sing, gently rock him or do whatever we need to keep him still for another hour.  As you know from other posts, we experience a lot of vomits each feed.  That goes with the territory of feeding of refluxer!

Simple....once you get used to it.










  
Okay, so product trying continues.  The Hugga-bebe (green thingy below) is the newest item to arrive.  Despite a difficult time getting this thing delivered (but they set things right and I received a complimentary product), Noah is enjoying being nice and upright in activity centers.  He looks a little surprised that I'm taking this picture...

Experiencing food!!!  Oh wow...this has been a hoot.  Now, I know they advise people not to feed a baby until 6 months - blah, blah, blah.  Well, of course, we want Noah to experience food and different textures as early as possible.  This is to help him deal with his aversion to the bottle.  Once we had the green light from our feeding team, we starting offering Noah a playtime with food 2-3 times a day.  He loves the bowl, the spoon and has even swallowed.  We know that because he will reflux and the good stuff comes back up - poor little guy.  He has tried sweet potato, squash, avocado (a favourite), chicken, pork, rice cereal, oatmeal cereal, prunes, carrots and mum mum cookies!  Our Dr. said to try lots of different food without giving too much worry for allergies.  I mean, how many kids are allergic to carrots??  We are having fun and praying that the big changes coming up for Noah (see next paragraph) won't set back his fun with food. 

Today is a big day for us.  We are meeting with the surgeon to consult about Noah's G-Tube placement and the possibility of having a fundo done.  This is a huge decision - what will allow Noah to have the best quality of life.  He is barely gaining weight but did recently get to the 13 pound mark - just.  Sometimes he vomits his entire feed.  We know we need to do something to help him.  It won't be a perfect solution as of course, with surgery comes side effects and challenges too.  We need to discern what is best for Noah.  Please pray for us in this decision making time.

We have been so blessed with amazing meals and little treats this week - thanks to Heather, Krista, Carrie, Gloria, Jen, Missy, Leo, Andrea and Alice for not only food/treats but also company and encouragement.  I had the blessing of spending a few hours with 2 dear sister friends today.  The reason one was in town was a sad one, but as always we relished in the precious time together.  I am so blessed by the women in my life who surround me with love and compassion.  The encouragement is such a sanity saver.

Here is my encouragement to you today.  Whatever might be happening in your life, know that He is Mighty To Save (by Hillsong Australia).  

Everyone needs compassion,
Love that's never failing;
Let mercy fall on me.

Everyone needs forgiveness,
The kindness of a Saviour;
The Hope of nations.

So take me as You find me,
All my fears and failures,
Fill my life again.

I give my life to follow
Everything I believe in,
Now I surrender.

My Saviour, He can move the mountains,
My God is Mighty to save,
He is Mighty to save.
Forever, Author of salvation,
He rose and conquered the grave,
Jesus conquered the grave. 

Noah's week

Good Sunday Morning!

Noah and I (Dar) are enjoying some worship music.  In my commitment to blogging more frequently, I thought weekly updates/musings would be an attainable goal.  As much as we'd love to go to church as a family, it makes for a tough day Noah-wise.  I stopped counting vomits at 10 at this morning's feed...so its a rush to get out the door and then his day consists only of feeds to fit them all in.  So Jared is off to corporate worship and Noah and are finding out own way to praise the God of love. 

We started our day with a bath to wash away our formula in our neck- good thing Noah has a built-in snorkel (see, I can make jokes about the tube!).   He's a big fan of this activity.   I am usually able to get a few minutes to get myself ready -- it is tricky to leave Noah unattended as he rubs at his tapes all the time.  We aren't as worried about his pulling his tube but he can easily dislodge his tapes.  I think we should buy stock in Bandaid - we are on box 8.  We keep figuring out a way to keep tings secure.  Anyways, I managed to get a shower in - usually pulling his hands away and saying "no, thank you Noah" keeps him away from his face for a few minutes.

This week was a retail therapy week!  Remember Jared, it is all for Noah (this is when he sees my credit card statement - kidding!)  I bought a few special products for Noah's reflux.  Below is the AR pillow - he had his first sleep on it last night and did well.  There is more and more vomiting going on at night so we hope this will at least keep him from aspirating.  He was really comfortable and was awake as always when I came to visit him at 3am.  Big eyes and smiles.  We hope this will be a good incline for him and lead to a restful sleep each night.  These products are on only available on line and come from the States; however, it is well worth the cost and effort it is helps Noah. 

This was the week that we came to a decision to pursue a G-tube for Noah.  When we met with Dr. P to discuss, he suggested he consider a fundo http://infantrefluxdisease.com/infant_acid_reflux/surgery.php.  This was a surprise to us and we are still on our knees with regard to that surgery.  I'll let you know more details as things progress.  Right now we are awaiting a call to meet with a general surgeon to discuss the 3 procedures (muscle removal to test for neuro diseases, G-tube and fundo).

Thanks to Jonah F., Noah has new favourite place to hang out.  We can put in him for a few minutes just before a feed and he goes wild, jumping, dancing, giggling - it is a hoot.  He doesn't seem to reflux in this (probably because he is being help up by the underarms rather than his tummy).  Thanks for sharing, Jonah (and Jill & John!). 









We've had lots of beautiful emails, cards and phone calls this week.  I haven't been great at returning phone calls with so many appointments (feed clinic, Dr., chiro etc.) and so I will get back to the 12 messages on the machine soon - I promise.  Oma (my mom) is headed on a 3 week adventure with a friend to Arizona and we will miss her.  Thanks to dear Auntie Terri (love you!) we have some nice meals coming to help fill in the gap of help.  Evelyn is amazing but it takes the 2 of us to care for Noah in the day - my mom usually comes from 4:30-6 and I get some cooking done.  Noah can't be put down after a feed so this way I will have supper for a few weeks and I can care for Noah.  THANKS TO EVERYONE FOR THEIR CONTINUED SUPPORT AND CARE.    Below is a picture of the "Verkerk" clan - L, K, J-Ann and Oma.   Those cousins of Noah are pretty keen on their little babe cousin.  We love their visits. 

Well, that's a brief update.  I'll leave you with the English translation of a favourite Dutch prayer...Ik ga slapen.  I sang this in dutch each evening before bed (as did many of you I know!).  Noah and I pray it too.  I wondered about the translation and low and behold the next day, my mom brought it hand written on a piece of note paper.  Thanks mom!  May it be a blessing to our readers. 

Peace to you this week.  Gotta run - feed time and big nap for Noah!

Love the Dykstras

Ik ga slapen:

I am tired and sleepy too.
As I kneel in prayer to you,
Lord, please watch me in the night,
keep me safe and in your sight.

All the wrong I did today
please forgive me Lord I pray,
Take my sin and take my shame
Wash me clean in Jesus' name

Help poor children far and near,
heal the sick and calm their fear
keep all people in your care
hear for Jesus' sake my prayer

Lord please keep my parents dear
and my friends both far and near
Make us reast until we wake
Keep us safe for Jesus' sake

Make me rise at morning light
thankful, healhy, strong and bright
as a brand new day I see
May your sunlight shine on me.

The Update

It is HIGH time I update our blog. We've been on quite the journey; a journey of parenting, of tube feeding, of dealing with reflux...we take things a day at a time, sometimes an hour at a time.  It is not easy.  It is not always fun.  But Noah's smile makes it all worth while.

Where to begin - we came home on a pass from the hospital on December 24.  We were really excited to have Christmas at home with Noah.  A couple of elves decorated our house and left oodles of gifts under a little tree.  What a blessing.

However, I (Dar) continued to have severe pain and on Christmas Day went back to emergency.  After receiving IV antibiotics I returned home to Jared who had been doing all of Noah's tube feedings (a huge job).  I was terribly ill for the next several days.

It was that same weekend that I was finally diagnosed with post-pardum depression.  It is neither easy to talk about nor will I reveal all the details in this blog.  Needless to say, I had been struggling since Noah was born and this had nothing to do (although it probably didn't help) with his health condition.  Thanks to a couple of "angels" I went into hospital overnight and though it took another week and my family doctor to actually start the process of healing, I was finally listened to.  A huge relief.  The journey with this common type of depression has been laced with lessons.  It required us to hire full-time help.  That was a struggle for me to accept that I could not care for my son on a daily basis without support.  However, one internet ad and an interview later, we had Evelyn.  She turned out to be a direct answer to prayer and a perfect fit for our family. 

I decided it was necessary to take medication for depression.  It has helped tremendously.  I am constantly working on finding ways to battle depression with good nutrition, some exercise, fun, and rest (hahaha with a baby).  I pray daily for the ability to sustain the effort Noah requires.  Each day is a little better for me.  In the darkest moments I did not know I would feel as well as I do today. 

Noah was officially discharged on January 2.  Thankfully all the major tests he's had (MRI, Stomach Emptying, Upper GI, Metabolic tests, Neuro tests) came back negative.  His need for oxygen tubes also ceased on January 1, the day before we came home.  That was amazing, especially since Jared had gotten the house all ready to go with home oxygen tubing.  So we left with an NG tube and reflux.  6 weeks in hospital.  One tired husband, one depressed wife.  Needless to say, it was not an easy time.  Without knowing how long the tube would be in place was really hard.  Then we had to learn to accept life with tube feeding.  Then we had to learn to tube feed Noah with love.  Now we pray before Noah "eats" - thank you God for our food today and our tube today.  Amen. 

Noah's current condition - life is tough for this little guy but he is a trooper.  We feed him, try to keep him still for at least an hour and often he still throws up (not spit up, to clarify) large volumes.  This has caused him to be labelled "failure to thrive" at several different times.  Noah has taken the last 6 weeks to maintain 12 pounds and we hope soon he'll move onto to the realm of 13! 

Our day consists of 6 feeds.  That is down from 8 when we initially came home.  That was a very stressful period of time.  Jared was up 2 times in the night for feeds as I was unable to manage on my own.  Each feed takes approximately 1.5 to 2 hours to drip in using a Kangaroo Gravity Feeding Bag attached to his Nasal-Gastric tube (NG tube http://en.wikipedia.org/wiki/Nasogastric_intubation).  The tube is changed once a week.  Initially I did the changing with a Paediatric Home Care Nurse watching (yes, they would watch and hold his head, but not do the change).  Then a lovely lady volunteered to do it for a 5 week period and now Jared and I are handling the changes on our own.  This is definitely one of the hardest parts of tube feeding.  Noah screams and screams.  He also dislikes anything to do with changing the tapes that secure the NG tube to his face.  We have to change the tapes almost daily and have purchased about 8 types of bandaids to help keep the tube secure.  Curious fingers find their way to the tube regularly and we do not want to keep putting mittens on our developing boys hands all the time.  

At each feed, we try to keep Noah asleep and moving as little as possible.  This is obviously getting more difficult as he gets older and wants to play more.  Moving him at any point in the feed or directly thereafter can lead to him refluxing.  He chokes and vomits regularly, even hours after a feed.  It is very hard to watch and we feel helpless.  Of course, all of this vomiting does not help his weight gain.  Those of you who have experienced reflux in a baby know how hard this is.  He is not able to nap "normally" so he does a lot of sleeping in arms and will also sleep in his stroller during walks. 

We work with a feeding team consisting of an Occupational Therapist (an excellent one!), a dietician and a paediatrician.  We go to Children's Hospital to the feeding clinic to work on oral feeding skills with the OT, Kim.  She is a wonderful source of encouragement and love for Noah.  He enjoys his time in the clinic.  We play with little cups, spoon feed formula and work on developing his skills as we move to solids.  We have NO idea how he will react or accept solids.  Its another journey we will undertake soon.

We will also be working with a Physiotherapist in the near future as Noah has some "low tone" or hypotonia.  It is quite minor at this time but a Neurologist still wants to have Noah put under general to complete a muscle biopsy .  We will see the orthopaedic surgeon soon to discuss the procedure.  In the meanwhile, we are considering a G-Tube (http://www.wisegeek.com/what-is-a-gastric-feeding-tube.htm) but are not sure if/when we will proceed with this.  Our OT is not sure it is the right step for Noah so we are in a holding pattern for now.  We want to make the best decisions for Noah's quality of life and sometimes we just are not sure which direction to take. 

The most difficult challenge is Noah's aversion to the bottle.  My biggest fear when the NG tube was placed was oral aversion.  As the months have gone by, Noah has basically ceased to bottle.  It is heartbreaking.  Aversion is very common with tube feeding.  I can imagine why considering a few factors:  not understanding hunger, having tapes on your face all the time, being fed on a precise schedule etc.  This is a whole other journey to overcome the aversion besides his inability to bottle effectively (he used to always try the bottle but would tire out or just stop).  Now he turns his head, screams, or chomps/chew on the bottle.  We are trying cup feeding, spoon feeding, and have purchased as many sippy cups as we did bottles.  If anyone needs different kinds of bottles, please let us know - we have cupboards full!

We continue to try different products to help Noah.  We are trying a chiropractor.  We will not stop trying new things.  We do not put our hopes in any one particular strategy but never want to stand still in our attempts to help Noah. 

Noah is a dear little guy - those of you who spend time with him (THANK YOU THANK YOU) see his sweet little smile, his belly laughs, his growing strength and development.  I love seeing his big blue eyes in the morning with a smile from ear to ear as if to say "I'm so glad you are my daddy and mommy!!"  We certainly are blessed that he is our son.   He has a lovely personality and is even-keeled despite his challenges.  He is really into rolling over right now which is a delight to watch.  He doesn't like being on his stomach but is learning to be in a better mood when it does happen.  

People often ask how they can help.  First of all, thank you.  We were so blessed with meals, gifts for Noah and us, the presence of family and friends, and constant prayers.  Mostly now we need prayer, understanding and acceptance.  Prayer is obvious.  Understanding that we are trying everything we can and that Noah is unique ("special" in my mom's words).  Acceptance that this journey is in baby steps (thanks to my new friend Val for that constant reminder!) and won't fit in any particular timeline or with any particular results with things we try.  Acceptance also means knowing that Noah is not just being "difficult" or "strong-willed" but that he has actual challenges with feeding and is following an aversion pattern common with tube-fed infants.  That does not make him stubborn, it just makes life hard for him.  Noah didn't choose to be tube-fed and we are trying to help him and make his day-to-day as good as it can possibly be.  He cannot be compared to anyone else - he is his own boy and as Kim the OT says "Noah will show us what Noah can do." 

I know there are many of you reading who have had tremendously difficult journeys in life - either yourself or with a loved one.  That sense of understanding has been of such support and encouragement to us.  Just walking with us, listening and offering help where you can.  We are so grateful. 

Noah - you are such a cute, dear son.  May you always be compassionate to the needs of others.  May you know the comfort that God brings to daily living.  May you sense the love your mom and dad have for you.  Thank for you being our little peanut.  We love you.

Blessings to all!

ps.  pictures of the little guy are on our picasa album:

http://picasaweb.google.ca/dykstra/NoahPieter#