Monday, November 14, 2011

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



Thursday, October 13, 2011

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

Tuesday, August 16, 2011

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!!!

video

Monday, July 11, 2011

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.

Wednesday, May 18, 2011

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.

Saturday, May 7, 2011

Esther Juliana Dykstra


Born 6:30pm, May 6, 2011

8lbs, 4 oz & 21"


Esther and Darlene are doing well.


Thursday, April 21, 2011

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.

Tuesday, April 5, 2011

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!

Tuesday, March 22, 2011

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.

Sunday, March 13, 2011

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!

Thursday, February 24, 2011

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.

Wednesday, January 19, 2011

Normal

The last weeks have felt very normal. That is a refreshing thing to say. It hasn't been particularly easy as all 3 of us have been fighting a nasty virus. For me that means a ton of asthma which has yet to improve. Noah pulled through a tough week last week where he hardly slept, coughed constantly and was a bear of a personality. He is definitely feeling better which is such a blessing.

We bought a new home and sold our current house in a matter of a week. That's a normal thing to do. Noah is completely off night feeds. Well, that's like most 14 month olds. Normal. I found a wonderful young lady to help me in May and June when the new baby arrives. Normal. Noah sits in his high chair for every feed. Normal. He watches tv and plays with food. Semi-normal :-) He is very vocal and demanding. That's normal, right? He is taking one nap everyday, going to sleep each time. It depends on his coughing when he'll wake up, anywhere from 20 minutes to 2.5 hours. As my pregnancy progresses, I'm enjoying this quiet time in the afternoon. I know it will be short lived with the arrival of a newborn. So I'm savoring the quiet.

Noah's trial with asthma meds seems to have little results - that's a good thing! We'll keep trying the mild steroid 2x a day and report back to his Ped. in a few weeks. We'll see what comes after that.

We have moved to allowing Noah to lead more and more in his oral experiences. I've allowed myself to accept a very dirty kitchen floor, throwing food away, vacuuming daily, and letting Noah smear food all over himself and his surroundings. He has responded. He now will take a bite or two off spoons - especially things like thicker yogurt. My plan this week is to buy a new batch of food that Noah has never tried and offer them to him. My motto is "wait, watch, wonder" which comes from Dr. Marguerite Dunitz-Scheer, deputy head of the psychosomatic division at the University Children's Hospital Graz, Austria. I hope to share more about her philosophies in the future. She is a specialist in rapid weaning and it has ALWAYS been my default website to visit when I think about Noah's future with eating. Anyways, here is the link: https://www.notube.at/

That being said, today with the help of our OT, PT, SP and Dietitian, we've decided to stay the course with Noah for the time being. He is taking his Pediasure feeds very well. His retching is still difficult and frequent, but it certainly isn't worse. That's huge!

With moving in 6 weeks and baby in May, there are a lot of transitions for Noah coming up. I am feeling strongly about reducing tube feeds in the next 6 months but I know that timing is huge. Our team recognizes that Jared and I do not feel a slow reduction in feeds will work for Noah. We've tried it last March and Noah began to reject the bottle even though his feeds were reduced for over a week. Now that he is off the night feeds, he has 12-14 hours off feed and he is absolutely not interested in eating or drinking in the morning. That isn't enough of a gap to develop his hunger. My thinking is perhaps we can see how Noah is doing with his weight in August and following. Praise God that Noah is growing really well and is 22 pounds. I share that with the hopes that no one will compare other kids' weights to his. That has been really frustrating in the past, especially since Noah's unique needs are not the same as a typical eater. Noah is responding to his diet and that is all that matters!


Noah loves to watch the cars and trucks drive by the window in his room - he'll miss that in his new house which is on a quiet street! He doesn't pull himself up to stand but we have many practice exercises and activities from our PT to help encourage him to kneel and stand more independently. She thinks it will take some tough love to happen as he isn't an eager participate when he is being pushed to try new things. We'll persevere and keep encouraging him to get off him bum (even though the bum scooting is darn cute!)


Minigo! Our new "favourite food" - he loves to play with the gooey stuff and make a big mess! We have been told time and time that our respectful approach to Noah's cues is paying off. The gains are hard to measure, but there is change. It isn't a battle zone, it is simply food and positive experiences with playing. My goals with each tube feed and oral experience is to wait, watch and wonder at what Noah might do! Now when he finds a piece of something on the floor he'll give it a try. Noah's "trying" sometimes is as simple as putting it to his outer cheek and pretending to chew. It is adorable. But he is happy around food. I feel blessed to be a part of his journey.


Feeding the monkey (aim is a bit off)

So, we keep on truckin' and now add packing up our house to the list!

Take care of yourself.


Just a note: Tube Feeding Awareness Week is February 6-12. There is a facebook page you can check out (search Feeding Tube Awareness) or check out the following website. I've outlined some of the information that is being shared to try and build knowledge and acceptance of tube feeding. We are so thankful that we have this technology to keep our son Noah alive, growing and developing as well as he is!

Information found from the Tube Feeding Awareness Website:

The general public is not likely to associate tube feeding with infants and children. Moreover, they are not likely to think of children who often look otherwise healthy as having a need for tube feeding. Given the rarity of tube feeding, conditions our children have and the human interest aspect of families who go through great lengths to keep their children healthy, our children can be of interest.

- The overall objective of Feeding Tube Awareness Week is to help raise awareness of enteral feeding as a positive and often life saving medical intervention for those who are unable to eat and drink enough on their own to sustain life, grown and thrive.
-Moreover, we hope to break down the social stigma that is currently attached to tube feeding by:
*Highlighting the positive outcomes associated with tube feeding
* Giving more information about the reasons that children require tube feeding
* Countering stereotypes and misinformation about tube feeding
* Feeding Tube Awareness is a group of parents of infants and children who are tube fed. The mission is to share parent knowledge of day-to-day life of tube feeding that medical professionals are often unable to provide.

Some Information about Tube Feeding:
* There are myriad medical conditions which impair an infant or child’s ability to eat or drink enough to sustain life, grow and thrive.
* Tube feeding allows infants and children to maintain nutrition and hydration while they:
o Grow out of their condition
o Grow stronger for medical procedures
o Battle their disease
o Find safe foods to eat
o Learn that food doesn’t have to hurt them
o Learn how to swallow/eat safely

* Parents of tube fed children are often thought of as not trying hard enough to feed their children, when often we have tried everything.
* The most basic of instincts is to eat and to feed your child. When a child is tube fed, parents often feel like failures for not being able to nourish their child. Moreover, medical complications can be a challenge to navigate making it even harder on parents.