The tube is gone

Noah's PEG Stomach Tube was removed last Tuesday.  He is recovering very very well.  He has started eating great again.  It has been simply amazing to see how well he has done. 

This marks the end of my time as a blogger.

I began to write just before Noah came into our lives and the blog turned into a place where I could honestly share our experience, our heartache and now our joy in the journey of tube feeding.

I'm finding it all hard to believe!  But it is true, Noah is an full on oral-eater, demanding his waffles and "bear" cereal, and being almost 3 years old in every way imaginable!  

For myself I need to "turn off" this blog, to turn my attention to family, parenting and work in a non-medical framework (which is taking some adjustment but in a positive way).

I thank you all from the depth of my being for sticking with us - when we couldn't talk, when we needed your help and you came to our door or email inbox with encouragement, prayers....to those who literally crawled in my bed when I felt I couldn't go on.......you know who you are..............

I will not forget this experience and your love as long as I live.  

Praise God for this gift of healing.  We are so grateful.  

Signing off, 

Darlene

Never Once Did We Ever Walk Alone....

Standing on this mountaintop 

Looking just how far we've come 

Knowing that for every step 

You were with us 

Scars and struggles on the way 

But with joy our hearts can say 

Yes, our hearts can say 

Never once did we ever walk alone 

Never once did You leave us on our own 

You are faithful, God, You are faithful 

(lyrics from Never Once by Matt Redman)

With tears streaming, I am so grateful to share with that our dear Noah is no longer relying on his gastric tube (g-tube) to sustain himself.  What an absolute life changing, miraculous summer he has experienced.  

Noah himself can sing the lyrics to the song above.  Each word is our family testimony of what was often a very dark journey.  But God is faithful and was present every step.  We are so aware rarely does a special needs child walk away from their challenges.  We are so incredibly grateful, humbled and in awe of the healing Noah has experienced.    

On June 30 Noah was admitted to the Peter Lougheed Hospital in Calgary.  That morning was the last time we tube fed Noah.  He was not given anything, including fluids, in his g-tube from that point forward.  It was a test of our reliance on God's comfort to see our son struggle to chew, shallow and struggle to understand hunger and respond appropriately.  We never doubted our choice but were on our knees praying that this would be Noah's chance to become an eater.  We had the support and care of a wonderful Dr.  This man, Dr. Stephen Wainer, was the first medical professional to endorse our desire to try a tube wean with Noah.  He saw that despite a tough start in life, Noah clearly had the ability to do a wean.  We set aside the disapproval of many other Drs. and para-professionals and tried it.   

With joy, we have said good bye to using his g-tube for feeding, medications, fluids.  With amazement, our son no longer retches.  At all.  Ever.  He doesn't cough.  He sleeps all night long and enjoys a nap daily.  He is so so happy and cheerful.   He has maintained his weight for several weeks.  He is learning the art of chewing, flavours, smells and the social elements of eating with others.   He still has to gain weight.  It will come.  He still has to face surgery to remove the tube and deal with the infected granulation tissue on his stoma site (tentatively scheduled for November 6).  But there is no looking back.  

Noah is an oral eater.  It is still a bit hard to believe.  Never once did we ever walk alone.   

Thank you God for this gracious gift of renewed health for Noah.  Thank you to all our supporters who helped us.  To our friends and family who checked in, some of you daily, to cheer us on, to listen to us cry, to encourage us when we felt lost.  I have stacks of cards from friends who wrote prayers, notes of hope and encouragement.  Thanks to those who asked questions and tried to understand tube feeding better.  Thank you for praying.  Thank you to Noah's little buddies for including him in things even when he wasn't sure how to participate in eating and now for licking many ice cream cones with him!  

One of Noah's first "meals" at the Peter Lougheed Hospital - chocolate pudding was a favourite early on!

Eating an ice cream from Grandma while we enjoyed a few hours at the Calgary Zoo.  There is a huge joy in watching a little boy lick and lick at an ice cream!

Playing in the "kitchen" for the first time and pretending to cook.

Eating.  Amazing.

If you are currently tube feeding your child and you need any support, encouragement, tips on blenderized feeding, more details about our experiences along the way and the tube weaning process, please leave a comment below with your contact details and I"ll get in touch.

If you are interested in listening to "Never Once" by Matt Redman, here is the link:


http://www.youtube.com/watch?v=722zPX1npcA

About time!

My morning snuggle crew!

What a super cutie - covered in pudding!!

Oranges, processed cheese, cookies, milk, carrots..this momma is sooo happy to fulfill any of Noah's requests for tastings. If he asks for french fries, I drive to McDonald's and get some. He is doing a great job with biting and spitting out his food. He hardly ever retches with his tastings which tells us he is reducing his oral sensitivities. After a slow start in 2011, Noah has made big advances since the fall. I'm sooooo PROUD OF HIM. He is such a brave boy. I'm so grateful to be on this journey with him.

Esther is sooooo much fun and a true loving spirit! She is so joyful and fun. She would like to catch up with her brother so she has started to crawl her way around the house! She truly completes our family.

December 2011: Disneyworld! Our 4 hours of fun after spending time with the Dykstra family in the Florida Keys. The trip was exhausted yet special. At Disney, Jared and I felt like kids again - I look forward to many more family adventures and a little easier time traveling as the kids get older. Jared and I love to travel and have had many lovely trips together. I hope I can pass the joy of adventure and exploring new places on to our kids!

Okay, so I've been a terrible blogger lately. I write lovely blogs in my head during the days but then I often feel zapped when the kids are resting or the evening comes and I want to get out with friends, exercise, work or simply hang out with Jared!

Physically I was not feeling good for about 3 months. My eczema was out of control. I felt I could get things better and was trying all kinds of stuff. I finally went to the Dr. in January and started some oral steriods and blam - all better within days. I still have a couple weeks left of meds but I feel soooooo much better. Praise God for medical advancements and medication that can help get through minor things in life that can drag you down a bit. Added to that time, Esther was consistently sick with a cold which isn't a big deal but it is a bit draining day to day. She was very unwilling to drink from a bottle throughout that period and after 4 months of struggling we are weaning her to a cup. She isn't a great drinker but loves to eat!! I was encouraged when I saw she was growing out of her clothing and gaining weight. As a first time mom to Noah, I felt so discouraged so often that things I would try for him would fall flat and with Esther it is not nearly so daunting (different circumstances but still).

I've been maturing a lot through my work. It humbles me, it challenges my faith, it energizes me. I'm really grateful to have a creative outlet and be working with a fine staff of folks and many dedicated volunteers. Also, I'm working on weight loss which is not something new for me but over the years I've found the tools that work for me well. It is a slow and steady ride but I'm seeing results which is encouraging. I'm taking an exercise class that makes me do stuff I've never even imagined I could do. It is good to be challenged. I like it. I need it. I'm thankful for it.

Jared is busy busy busy with work. He is feeling good about the work he is doing, is challenged by it and puts in a lot of hours. In all our marriage, I've never seen him up so early in the morning! He continues to be a true parenting partner. There isn't anything he doesn't help with in terms of parenting. He is amazing. He takes care of all the "stuff" with home maintenance, cars etc. He lets me manage the money :-) He lets me be myself. He gives me breaks on the weekend so I can work a bit, enjoy friendships and take care of myself. He encourages me in my goals and never puts his own interests ahead of mine or the children. Selfless. He's really fun to be with and makes marriage a joy. He works as a volunteer in the technical ministry at church and really cares about making things work well there. We are very similar - we don't want to just do "good enough" but do enough that we've done it well.

Noah, Noah, Noah....what an incredible 2 year old. A firey little spirit. A brave little guy who has some hard stuff to deal with each day. Loves a good ol' belly laugh. Loves to run, jump and play. I stand amazed at him daily. Low tone? Not holding him back. Hole through his stomach - no match for this little guy. He continues to impress the therapy team and while the journey to eating/drinking is a daily challenge, it has more joys as food is fun and we try to make it a positive experience. I keep being told by the therapy team that our connection with Noah and his needs is resulting in progress and I am seeing that. I have a great working relationship with all the therapists and give them ideas as they give me some back. I was asked to be a leader in a seminar series on parenting special needs children through the Child Development Centre. I turned this down due to time constraints but it was an encouragement to be asked. Another experience I get to credit to Noah and his presence in our lives.

Noah is drinking from his straw cup every day, and every few days he'll just randomly yell out a food he wants! "Oranges!!!" And mommy comes running! We do a really good play picnic at 4pm daily - this is his best time of day for tastings. We work hard at incorporating food play into our day and while it is tiring to make blended food, pureed food, diet food and regular food (although Jared is the easiest going when it comes to eating so he'll go with whatever I'm making), I know this is only for a time.

We are having fun as a family. We are enjoying life and praising our Maker for the gift of our children.

Take care and happy tube feeding awareness week - check it out on Facebook!

ps. HAPPY BIRTHDAY GRANDPA DYKSTRA!!! We love you and thank God for you.

**HERE IS A LINK TO A RECENT NEWS STORY ON THE CALGARY PUBLIC LIBRARY - Noah and I were interviewed about library usage - his first TV role!

http://www.cbc.ca/news/canada/calgary/story/2012/01/29/calgary-public-library-record-busy.html

Almost two?

Look at our little taster - super comfortable around messy foods!

Hi everyone!

I can't believe how much time has gone by since I last wrote a blog! It is really a good thing since in that last months our Noah has been making wonderful progress!

Here are the super cool things he can now do!

1. WALK, WALK, WALK!!!!!!!!!!! He started a few weeks ago and has almost left scooting behind.

2. Drinking small amounts of milk and water out of a Rubbermaid juice box. He is getting more comfortable holding his cup and is starting to expect getting it when he sits down in his highchair.

3. Asks for food by saying "mum mums?" This doesn't happen often but it does happen. It is music to my ears.

4. Loves to dance around the living room with me (so sweet).

5. Is getting used to his little sister and wants to "check baby" or "see baby." He also enjoys bringing her a toy or blankie.

6. Tasting a variety of foods - all of his "eating" is very hit and miss, depends on the circumstances and surroundings. But he is very willing to be part of the dinner table and very interested in what we are eating. He labels almost all food as "pizza" but what does it matter? He is trying and I've never had this much hope for Noah's future oral eating.

7. His speech has advanced beautifully - he is speaking short sentences, copies us and makes more and more sounds and learns new words daily.

8. He is so super smiley, loves a good gut laugh, gives us hugs and kisses and has turned into a little cuddle monster. We love it!

Life is simple and sweet...full of giggles and silly faces (and diapers). I have taken a part-time job with our church which has been a wonderful blessing. Thanks for some excellent child care (Oma and Miss. Marie) I am able to put my energy into areas of passion other than my family. It has been very good for me. I'm thankful for this opportunity.

As for the next months, we will continue our daily food play with Noah, giving him his homemade blended diet (which we love) and talk about planning a tube ween. That is the "big scary thing" in our world right now. But I cannot control that and I am constantly praying to release Noah's tube feeding as something I am grateful to be a part of rather than just a burden. I will admit it continues to be hard to see him retching but Jared and I do feel excited how willing Noah is to try tasting. We try to stay focused on that. Tube feeding is a stressful way to live but we know dwelling in the stress takes away the joy we have in raising our children.

Here are a couple of newish pictures. Noah will turn 2 on November 24 and unlike last year, we are gonna party it up this year!! Noah is going to have a few little friends over for cupcakes and then our family will also have a celebration. Then, our next big adventure is heading to the Florida Keys area in December for a Dykstra family "reunion."

Thanks for reading, for your constant encouragement, your prayers and mostly your presence in our lives (whether near or far). Take good care!

Happy family

Daddy and his monkeys

Love the bib from Oma : I moose eat! (in pink and yellow - tehe)

A new look in fashion BUT LOOK AT THAT STANDING!!

(thanks for the life jacket Uncle Andrew and Auntie Anika)

Noah and his favourite cup

Dance, run, quad, Connor!

Our friend, Connor passed away on Thanksgiving Day. His life had great purpose and now he is free from pain. We mourn and cry for our dear friends the Vanderveen family.

Here are a couple of links you might want to check out.

http://www.legacy.com/obituaries/calgaryherald/obituary.aspx?n=connor-vanderveen&pid=154042286

Geraldine's blog:

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

Please pray for the family as they bury Connor this afternoon and as we gather to celebrate his life this evening.

Blessings,

Dar

Plugging along

Trying a bit of walking with mommy's help - Noah likes his new heel cups that his physical therapist made for him!

Summertime girl.

Noah on his first beach day!

Playing with his big cousins - Kristopher tried feeding Noah yesterday and he did great. What awesome helpers! He proves ANYONE can do this tube feeding thing!

What a sweet baby our Esther is - reminds us of Noah and his sweet spirit in the beginning of his life (well more Jared than I since I spent many of those early months being ill)

Noah adores his daddy and his daddy's computer!

Daily play picnic with a bunch of different tastings. This is a type of therapy I do with Noah that allows him to taste foods in a fun way. It is pretty messy and he doesn't always participate, but we have fun trying. It is a little tiring to make food for Noah and then turn around and make his blended diet out of completely different ingredients...such is life with a non-eater!

Enjoying the sprinkler and a little drink.

How quickly the weeks fly by! We are enjoying summer, loving 3 feeds a day for Noah, watching Noah trying to walk with his new heel cups, trying not to think about weaning very much (hard to do), being discharged from pulmonary clinic at Children's Hospital, being sent back for further GI testing.....life is simple, delightful and filled with giggles. It helps to balance out the daily stress of tube feeding.

I find myself missing getting prepared for the start of the school year as this is the second year I haven't been teaching (and only taught for one year to begin with). I have a few new things going on in my life (see next paragraph) and some things I am considering in terms of my own career and personal growth. Please keep that in prayer if you have a moment - discernment and of course TIME MANAGEMENT!!

Please pray for our buddy Connor who is in the hospital. I marvel at your stamina and positive spirit, Geraldine. I am proud and honoured to now be part of the CASA (Caring Abroad Society of Alberta) Connor Board of Directors...if you are in the Calgary area, please join us for a Fiesta Fundraiser Dinner complete with Silent and Live Auction - September 24. Here is the current website soon to be updated:

http://casaconnor.blogspot.com/

And of course, keep up with Connor's journey here:

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

Have a great end of summer!!!

A new reality

Tossing a pine cone.

Baptism of Esther Juliana - such a special day.

Noah with his grandparents!

One year with our g-tubie!

Blending away every 2 days!

Peak a boo little sister!

Hello again!

We have entered a new realm at the Dykstra household: the two kid family. It is joyful, noisy, fun and mostly really busy! But since I've been sick the last couple days (pink eye and a cold), I thought I should spend my couch time being a little bit productive! So here is a brief update on Noah. I should say that Esther is doing very well. Her feeding was rocky and challenging but after a formula change (momma's instinct!) and a trial of Zantac (since stopped), she is starting to pick up and do well on the bottle. Praise God.

Here's a little glimpse into life for Noah (and a big thank you for your continued interest, care, love and support in our journey of tube feeding).

Noah did very well with tolerating feed until the end of June. Suddenly he was retching frequently and his behaving was riddled with crying, hitting and generally being upset. I still feel he was teething since as of this week, super happy Noah is back - horray! I love that side of Noah - easy-going, fun-loving and cheerful. The best part is that I see a real change in his retching. I counted maybe 5 yesterday! He is still having trouble napping and tends to wake up at the 30 minute mark retching but he is a good sport about it all so what can we do? We just go with it!

I AM SOOOO HAPPY TO REPORT that we have been able to move Noah to 3 tube feeds a day! As of this past Sunday I have recalculated his recipes, added some extra high calorie ingredients and we are doing well on this new routine. What a change for our little guy. While the feeds are pretty "rich" I believe he is handling them very well! It just creates more normal routines for Noah and for our whole family. Now he spends at least 30 minutes less each day sitting and watching his DVDs. Again, this is a step we have taken without suggestion or without support. We've learned that if you want to go a different direction when tube feeding, you'll likely do it on your own. Thankfully Jared goes along with momma's instincts and I in turn with his. To that end, Jared has helped Noah wean off his Losec (proton pump inhibitor medication). We'll wait and see if Noah shows us any signs of complications being off the meds. He has taken Losec since he was 3 months old so it is a big change for him.

At the same time, we've added in Singular to his daily routine. This is a pill used to treat asthma and it is being trialed for one month as the recommendation of our new pulmonary specialist. We really don't think Noah has any form of asthma but we need to give it a try. We crush it from pill form and add some water to flush it through his tube. The coughing that Noah does is still a ball of confusion for his Drs. and this is another effort to see how he responds. So far, nothing exciting to report....we'll see how it goes.

Noah is learning many new animal sounds and his most used phrase is "what dis, dis, dis?" He also knows "hi" and "bye" but doesn't use any other words. He does however make a ton of sounds and babbles constantly. I love listening to him especially when he is outside in his beloved backyard. He has definitely made some progress, albeit slowly, in the last months.

Mr. Noah has become an expert and pretty fast little scooter! He pulls himself up to stand and shuffle all the time but he is so used to scooting and has figured out it is a fine way to travel that we don't see him walking too quickly. At almost 20 months we just keep watching and waiting - one day he'll get going on his two feet. In the meanwhile, he is so cute to watch scooting around the house and backyard.

Noah had a hearing test in June and the verdict is he is hearing in the normal range. Good enough for me but they want a follow up in 6 months. We'll see what we decide to do.

We are "nanny-free" for almost 3 weeks - we sure miss Marleen but did enjoy a week with Grandma and Grandpa and things have transitioned well for me being a momma on my own during the day. Jared comes home ready to help out with feeding either kidlet so we have a good routine going.

Thanks again for keeping up with our family.

Our newest addition

Hello!

Thank you for all the congratulations on the arrival of our daughter, Esther Juliana, born on May 6, 2011. Here are a few more pictures to document her first week of life in our family.

Noah has adjusted beautifully and is enjoying all the different people caring for him. He continues to take his blended food feeds well, with his retching being well managed. I'm so proud of how well he has done amidst the changes around him. He thinks his sister is a pretty fun addition to the household and isn't too put off that I cannot lift him or really do much care for him. He is in very good hands with daddy in the morning and evening and then a group of special women who are helping us in the 6 week recovery period.

Our planned c-section went better than I could have imagined. God has been so gracious in my recovery process. I feel better than I did months after Noah's birth and am able to manage a newborn and the household with lots of support. We are learning to readily accept help, knowing in time we will be more able to bless others.

Esther is a joyful addition to our household and the extended family. Esther means "star" and comes from a character in the Christian Bible, a woman of great character and strength. Esther's middle name is the same as her Oma's (my mom) and is also a version of my sister's name. Both are very important women in our lives and in our journey with parenting.

I'm going to take a little break from blogging to focus on parenting, rest and recovery. Noah is stable in his feeding, we aren't looking to add or change anything to his therapies right now and we are just enjoying a season of raising our young children. Things are going well with Esther, she is a healthy little girl and we are learning her routines.

We are incredibly blessed. Blessings to each of you.

Esther Juliana Dykstra

Born 6:30pm, May 6, 2011

8lbs, 4 oz & 21"


Esther and Darlene are doing well.

Regrouping

So the big anticipation of the month was Noah's tube change. To recap, about a month ago we noticed a tiny hole in Noah's PEG tube. We continued to feed him as normal and found that the leak only occurred when the tube was kinked. I called the g-tube clinic and was told to book Noah in for a tube change with the surgeon. Done and done.

We arrived on Wednesday morning ready to have the change done. I hadn't slept in 4 nights, both due to pregnancy and the worry about the fact that I had been told time and time that Noah wouldn't be given any sedation. I wish I didn't worry. I prayed through my worry. I asked God to give me peace and wisdom in my hesitations about the change. But I'm human and sinful and I couldn't settle down.

We met a different nurse for training. We started talking about Noah's tube, the leak, the fact that we are doing blenderized. We often feel very defensive at clinic and this time was no exception. Immediately they got all concerned about blenderized and asked what kind of blender we had and how we had come up with the recipes and who was monitoring the situation. Sigh. I confidently said we were using a Vitamix and all the recipes were checked by the dietitians from Infant Services. We went over the challenges of using a mickey skin level device with blenderized. I'd love to hear from parents out there about any challenges they have faced with BD diet and the tube - ie. plugging. I'm thinking the occurrences are few and far between.

Anyways (please excuse my thoughts, my pregnancy brain is in full-force and I seem to be all over the place!!), we move beyond the feeding to the removal of the PEG. She told us it would be safer to pull the PEG out rather than cut it off at the stomach and let it pass. I was TERRIFIED. This is exactly what I was afraid of. I asked once again about sedation. HALLELUJAH. She said we could absolutely have Noah sedated, just not today. It had to be booked in day surgery about a month ahead.

This is both wonderful and absolutely frustrating at the same time. I have been asking the g clinic for months if Noah could be sedated when the time came to change his PEG. No, no, no was the answer. I was told it wasn't necessary. So, now the possibility was on the table and I didn't want to do the change without the sedation. I've met parents online whose kids have had major challenges after a tube change at a later age, in fact even some had post traumatic stress disorder. Noah already has major "white coat" syndrome, meaning he can't stand Drs. or Dr. offices. He freaks out and screams anytime he is examined, even if its as simple as listening to his lungs. I always have to pin him down at appointments.

So the frustration? Why was this person saying yes? I told her that I had asked before. She said she probably shouldn't have said anything about it. WHAT?? We are the parents of a tube fed kid. We should be given ALL our options for care and treatment for each and every procedure. I shouldn't have to access most of my information from strangers I meet on line (whom I deeply respect and appreciate but you know what I mean). So often I have felt like a small child when I inquire about equipment etc. and the responses I receive. Now, this is all in the past, I'm not upset, I'm not going to dwell on it. I just hope for other new parents who are tube feeding that they would not feel as frustrated as we have. My advice - find other tube feeding families to talk with and gain wisdom and insight from their experiences!

Anyways, she asks to see the tube. She acknowledges how small the leak is. She talks to Dr. Wong. We talk to Dr. Wong. He looks at my expanding belly (countdown is on to baby!) and we all decide to wait. Wait until sedation can be booked and continue to use the still-functioning tube until maybe August or September. Relief. Rejoice. Regroup.

This week to come is full of appointments once again. I need to have an ultrasound on Tuesday just to check the size of baby. Position makes no difference of course because of our planned c-section. I'm measuring a bit large (I feel a bit large!) I doubt it will change our date for surgery. Noah has PT and Speech this week. He has been given a speech assessment recently and he is certainly below average in his basic speech. We know he understands so much but his only word is "bye bye" and he used to say "mama" and "dada" but not anymore. They will soon check his hearing, not that any of us are worried, but you know how the medical system works and we appreciate them covering off all the bases for Noah. We just keep working on encouraging his babbling!

As for PT, Noah continues to try and stand and he has shuffled a bit around the coffee table. We keep many of his toys up on tables, couches, ledges to encourage him to stand up. Noah isn't motivated by many things so again we wait for Noah to make his move and try to encourage him as much as possible. He is less afraid of being on his feed which is a relief. He still gets very frustrated easily and will hit himself or hit his head against the floor or furniture. We aren't sure why he does this but have chatted with our Ped. about it and we are just seeing how this behavior proceeds with time. He still has lots of smiles and laughs every day, except on feed! Food and Noah are just not a happy mix :-)

Blending food is going well and while still full of figuring, calculating, watching Noah's tolerance and finding the right foods to use, it is working fine. I'm blessed to have great resources like Allie's mom Jodi who like me found it hard to find exact recipes online and she readily shared her recipes with me. I hope I can be a resource to others in the future. Thank you, Jodi!

I think this will be my last blog until baby #2 appears on the scene. Jared will post some pictures and an update for your fine folks when the time comes and I'll stop typing as the carpel continues to worsen. I remember it getting better when Noah was a month old so I'm hoping it will be behind me in a few months! The nausea and vomiting disappeared right after birth with Noah so here's hoping for a similar outcome! We are very excited to meet our little one.

Easter blessings to each of you.

Blenderized Diet Update

Tupperware kitchen party - couldn't get him to smile with his eyes open!

Enjoying the spoiling from Uncle Rob who loved shopping for Noah in Disneyland!

Hanging out with the "big" cousins

One of our first blends....they have gotten "better" and now include fresh, whole food ingredients. I'm really happy about that and hope to be able to blend only whole foods (in terms of fruit and veggies)

We are doing well in Noah's journey of "eating" real food. It is well worth the effort and I hope that we'll see the scale show good results next time we have a weight check.

We truly believe that Noah is doing well on this diet. He has slept through the night, has had no more daily "blowout" diapers,. Noah retches at least once around each feed, plus his usual morning retches (2-3 in the hour after waking) so that remains consistent. That is okay with us because it confirms our feeling that Noah is volume intolerant. He retched on Good Start formula, Neocate, Pediasure and now on "real" food. He retches on water. It is hard to believe he has a cow's milk/soy allergy or intolerance based on our continuing journey with tube feeding. Perhaps he is lessening his retches with age? It is hard to know and probably not worth spending time trying to figure out. We are happy to be feeding our little tubie this daily mix of "real" food and have ensured (well, Jared has) that we have all the supplies to make the blending as easy as possible.

What do we blend? Well, I have to admit to breaking a few "rules" and not spending a few days in between introducing new foods to see if Noah has any allergies. We justify our actions by the simple foods we are using and also the fact that Noah did eat some solids between the ages of 3-6 months and never showed any intolerance. As our Pediatrician reminded us, "how many kids are allergic to carrots?" So we are being conservative with our ingredients and watching Noah's skin, bowels and retching to monitor his reactions. So far, so good.

Here are the basic ingredients we use in Noah's blends. They do vary from day to day a little based on his calories/fat/protein/fiber/carbs/vitamins. Basically, he has a veggie, fruit, grain, protein and a fat daily. I use "sparkpeople.com" to calculate his daily intake and it is easy to print off each day to discuss with Noah's RD and Ped.

My main goal is finding high calorie/higher fat foods so we can boost his overall calories without having more volume. Noah can take 6 ounces perfectly but starts to look a little weary when I get to 8oz. However, 4 feeds in a day is enough for everyone so I'm pushing him to the 8oz per feed so that we can at least have quality nap time/play time in the day. I'm not willing to do many feeds out of the house right now (partly due to pregnancy but also Noah's need for a quiet environment during feeds) so we are real homebodies, but Noah doesn't seem to mind!

Here are some examples of what we've blended so far:
Applesauce (sweetened high-calorie type but I'm planning to start using a whole apple soon)
Pear puree
Mango/pear puree
Prune puree (just a few teaspoons)
Cooked, enriched macaroni (I initially used this but have left it behind for higher nutrient grain options)
Cooked lentils and beans
Hard-boiled eggs
Cooked chicken breast (you should see the Vitamix at work - awesome!!)
Avocado (this is my favourite "power" food)
Brown Rice Infant Cereal (thank you Amanda for the tip on infant cereal)
Whole Goat's Milk (I have only been able to find this at Safeway or health food stores but I'm so happy to have it in our quest to keep things cow's milk/soy free for now)
Organic Baby Oatmeal Cereal (cow's milk/soy free!)
Orange veggie puree (carrot, sweet potato or squash - planning to start use baby carrots etc.)
Green veggie puree (peas or beans, I just bought a bag of frozen beans to start trying those)
Olive Oil (good quality extra virgin but will try Omega, flax and coconut oil too in the future)
Dose of liquid multivitamin (Wampole's brand)
Drop of Vitamin D daily

Other medical info:

Sweat Chloride - was NEGATIVE. We are so grateful that Cystic Fibrosis is off the list of possible diagnoses for Noah!

Tube change - should take place next week. I'll let you know how it goes!

Have a great week, everyone!

News

"I like it here, mama!"

Ahhhh, a great kitchen!

Trusty, super helpful Grandma on duty (Grandpa was also amazing!)

Home sweet home

Moving news:

Well thanks to A LOT of help, we have settled into our new home. I was a reluctant mover, only in that I didn't think I could handle the work, but am overjoyed at our new home and the benefits it offers our family. Thank you for all the help, offers of help, prayers and encouragement. Thank you especially to Grandma, Grandpa, Oma and Auntie Julie-Ann who made the whole process manageable with their care and hard work.

Noah did beautifully in the transition process and handled everything like a champ. He is enjoying his version of stair climbing, which consists of us helping up while he "walks" his feet on the stairs. In his true style, he isn't bearing any weight on his legs when he does this. Smiles. Noah has started standing up in the crib which is a great development for him.

We are settled and the coffee pot is ready if you want to come by and take a peek.

Neurology news:

Last week I thought Dr. Sarnat would discharge Noah from neurology; however, he would like to complete one final MRI of Noah's brain to ensure nothing has been missed. We aren't opposed to this but of course it comes with general anesthesia as Noah will need to be still for 1o minutes. It is a "light dose" so hopefully it won't be a big deal for him. It will take approximately 2-3 months to get this appointment so it isn't something we have to think about in the immediate.

The other interesting news is that Noah will definitely remain hypotonic (low muscle tone) for his lifetime. It isn't too big of a deal - he'll need to avoid contact sports and will be prone to dislocation of joints. Good thing he is more of a book/music/tv kind of guy. This is really one of the only "symptoms" Noah has ever been diagnosed with. There are diseases/disorders associated with hypotonia that show feeding challenges.....but after spending time reading through all the possible conditions, nothing really seems to fit Noah.

G-tube news:

Noah will need to go to a skin level button in the next few weeks. There is a pin-hole sized leak in Noah's PEG and according to the G-tube clinic, that means Dr. Wong will change it out to a Mic-key button. We had tried to do this change back in November, but did not do it at that time due to Noah's retching. We had just decided not to pursue changing the tube until something happened, and well, "it" happened. The earliest I could get Noah in to see the surgeon (who removes the PEG) is April 20. The nice part about the mic-key is that we'll be able to do our own changes, approximately every 6-8 months. Our prayer is that Noah will not be too anxious at clinic that day and though I know based on experience he will be very upset, I hope it will be over quickly.

Sweat Chloride Testing news:

Noah is being screened for Cystic Fibrosis on April 6. The test is at least 30 minutes and I'm not looking forward to keeping sweat bands and electrodes attached to Noah for that duration. I'll bring along the trusty DVD player and pray for the best as I'll be on my own with Noah.

Blended Diet news:

This step in changing Noah's diet has taken much longer than I thought. We have our Vitamix, but I'm having a hard time reaching the dietitian. I know that the recipes I've worked up will meeting Noah's needs, I've calculated his water requirements and have purchased the basics to get started. We are starting simple, with already pureed baby foods, and avoiding milk and soy products for now. I haven't been able to find a truly milk free infant cereal so if you know of a brand, please let me know. For now, I'm using enriched, cooked macaroni as a base grain, and will give quinoa and brown rice a try down the road.

So despite not talking to the dietitian, we are starting tomorrow and give it our first try. We are both really nervous, mostly due to the potential of plugging the tube. But sometimes after a retch, Noah brings up some pretty thick stuff, so I'm hoping blenderized won't be any tougher to get done (how's that for a nice image?)

Our recipe for tomorrow is quite simple. We will still give him 2 feeds of pediasure while he transitions. In the other 2 feeds, he'll "eat" cooked macaroni, applesauce, peas, carrots, rice milk, pureed chicken, olive oil and a dose of liquid multivitamin.

I'll let you know next post how it is going.

Baby Dykstra #2 news:

We've been scheduled for a planned c-section on May 10. It is peaceful to know the date and be getting prepared. The baby's room is set up and most importantly, many prayers are being lifted that our 2nd experience as parents would begin with a more "typical" start. Baby is healthy, and mommy just tries to take it one day at a time as sleep is minimal. I'm still nauseous through the day and night and it is draining. But pregnancy is almost over :-) And then we'll be a family of 4. We are ready, eager and excited.

Whew!

Enjoying the moving process (wearing my sweater from Uncle Nathan!)

Auntie, is there anything you can't do?
Noah being a very good boy for a haircut by Julie-Ann (it was just too cold and Noah too sick to venture out to Mrs. Deenie's this month for our cut).

The new do!

In my last blog, things had improved with Noah. Not more than 2 days after that entry, Noah got what appeared to be another stomach bug. It was complicated by some teething which may explain the constant diarrhea but doesn't necessarily explain his inability to take feed. Retch, retch, retch. We were well worn out by the end of the week.

He was a miserable little bear, screaming day and night, had some very difficult behaviour, and would barely sleep. We were concerned about the intensity of his retching and constant diarrhea that we took him off Pediasure for 24 hours and gave him electrolytes only. The strange thing was, he right away stopped retching! That day was really neat for Noah and I. He played so well, I was able to do much more around the house compared to a typical day. He took the electrolytes so quickly.

The next day, I started Noah back on formula, about half his normal volume, and decided to use the plunger to quicken the feeds. He did well and it gave me confidence to continue to feed him quickly since. That is saving us a lot of emotional energy and time in general when we come to a feed. His bowels settled down and for the last 6 nights, he slept through the night (that's a total first for us!), had some decent naps and hasn't woken up coughing. Now, we recognize that he may easily start having difficulties during feeds and sleep, but we certainly have enjoyed the reprieve.

It was during that period that we had a meeting with Dr. Palmer, Noah's Pediatrician. His thoughts were to return Noah to Neocate, double his Losec meds., refer Noah back to GI clinic, refer Noah to a pulmonary team and complete a sweat chloride test (to rule out Cystic Fibrosis).

We totally disagree with our Dr. on returning to feeding Noah Neocate. Noah retched and retched often on Neocate. We tried it for 8 months, both on 24 hour feeds and bolus. So, we decided to start our journey with blending our own food for Noah. The challenge is appeasing the Dr. and dietitian by showing the nutritional information Noah will receive through his blendarized diet. The frustration is that a typical 16 month old diet would not be calculated so precisely. They would eat 3 meals and snacks each day. In any event, I've put together several basic recipes that meet Noah's current caloric daily intake. My goal is to not get too nutty about all the numbers and just remember that Noah will be getting real food each and every day, and hope and pray it will be something he tolerates well. I'm expecting to receive our Vitamix blender this week and while expensive, it comes highly recommended by lots of tubie parents. We don't want to clog or plug Noah's g-tube so we need a very smooth blend.

As for doubling his meds, we are also opting to leave his dose alone for now. We aren't convinced he even needs the Losec, but it is standard to be on it for at least a year after a fundo. We'll continue to give him one daily dose.

Going back to GI clinic probably won't result in any testing for Noah. The last time we attended clinic was in October and at that point they said they couldn't help Noah further. We'll go back and see if they have anything to add to our plan right now.

The final 2 thoughts of the Dr. (pulmonary and sweat chloride) have to do with Noah's coughing. We still have a gut feeling that his coughing is gastric in nature and is related to feeding tolerance. However, since we have ruled out asthma it is the next logical step to engage a pulmonary specialist to investigate further. Same goes for the sweat chloride test. Noah was tested for CF as an infant but this is a more comprehensive test. April 6 is the date of the test and I'm nervous because Noah is not a willing participant when it comes to Dr. visits and tests. I hope he'll be okay.

The journey continues, the questions continue, the search for a diagnosis continues. We have hope that Noah will continue to take feed quickly and tolerate them well. Clearly, he is a very sensitive little guy as the last weeks have shown us. He seems to pick up stomach related things very easily though doesn't have a lot of colds (a relief). We keep working as a team to support Noah's needs. I can't sing Jared's praises enough, he is an incredible father and husband. I am so blessed.

Pregnancy update: still throwing up, still feeling nausea 24/7 (worst at night), not sleeping much - but as Jared says, still smiling :-) It is hard but the countdown to meeting our new baby is coming soon. That keeps me going.

Moving: thank you for all the offers of help! We are doing well with sorting and packing and have hired movers to do the heavy work. We are looking forward to settling into our new home and are praying Noah makes a smooth transition. He doesn't like change very much so we anticipate a few tough nights, but we hope he'll accept his new surroundings.

Talk to you soon, everyone!

T minus 3 weeks

Taking a feed while enjoying some cartoons (in Canmore for a night away with mommy and daddy).

"What are we doing, mommy and why am I wearing this funny suit?"

"I hate swimming!!" He screamed the entire time.

"This is more my idea of fun!"

Our attention has moved to packing and moving in about 3 weeks. We have decluttered, made many runs to the thrift store and sold a bunch of stuff on kijiji. Thanks to Terri and Jen, we've made a big head start on packing too. It is a good distraction for me right now as this pregnancy is getting tough with minimal sleep and constant nausea. Between Noah's daily needs and organizing for the move, I am managing. We have lots of help lined up for the move, including Jared's parents flying out (thanks!), so I am positive it will go fairly smooth overall.

Noah has had 3 wonderful days after a week of fighting what we think was a flu bug. It isn't nice for a tubie to have the flu as it results in constant retching. We took him NPO (meaning no food) for almost 3 days and are just about back to normal feed volumes. He is back to smiling and playing which we missed for a while. Glad to have your happy self back, Noah! Thanks to my sister for helping out with coffee treats, Costco runs and Jared's favourite, boterkoek (butter cake) treats. We are finding it is easier to stay home and run feeds/play/nap....that means we haven't been getting out much. I accept it but find it hard to engage socially as I am the sickest in the evenings so once Noah is fed and down to bed, I'm beat! As always, Jared's gives me breaks on the weekend and I have a chance to nap or get out a bit. So, thank you for the many offers of playdates and outings - sorry we can't often take the opportunity to hang out. There will be a time when it will be easier. But for now, it is a strict schedule to get Noah the calories he needs to grow. And the retching....the drain of the retching. It remains. It is hard. I try to not be discouraged but it is so hard to see Noah in distress that often. He is a trooper and usually returns to his normal self soon after.

Noah's sleeping pattern has stabilized, although last night he had a tough time with retching and ended up being awake (but happy) for a few hours. He did sleep until 8:30am this morning which is very unlike him - we'll take it!!

Thank you for all the support for Feeding Tube Awareness Week! It was great to have a lot of interaction in the form of questions, comments etc. It really warmed out hearts to see several friends make their own Facebook statuses about tube feeding. Your support and interest in Noah's journey encourages us when the day-to-day continues on.

Please pray for our friend Connor. He is at Alberta Children's Hospital right now, being moved to ICU as his oxygen levels and blood gas levels are not improving. It is so taxing on Jerry and Geraldine and of course Connor is struggling just to breathe. Our hearts and thoughts are with you always!

Also, please pray for Noah's Grandpa D. who is having surgery today. We love you, Grandpa.