Thursday, July 29, 2010

Neocate, take 2 and other bits

Hello there fine folks,

We have been in Children's since Tuesday morning and again, I cannot sing the praises of the staff here enough! We were through emergency and into a room in less then 5 hours.

How's Noah, you ask? Well, he is breaking our heart when he retches and melting our hearts the rest of the time.

Bits of the plan: Going forward the plan is quite conservative. We are going to re-trial the Neocate for 2 months. That means we will probably go home in a week or less, at least that's the thought, subject to change. We will also try some bolus feeds with Noah so that perhaps he won't have to be feed continuously in the day, only over night. There were two reasons for just trying the Neocate without further studies or investigations. One, if Noah has eosinophilic esophagitis then the only solution would be to go on Neocate. So we skip over the invasive test (under general) to an assumed diagnosis. The other was an MRI of the vagus nerve. It was noted after the surgery that his vagus nerve was intact which is all an MRI would show. He would have had to be sedated so that too. We will follow up in a few months with GI in the event Noah doesn't improve on this plan.

Bits of steps. Step one: change to Neocate. Step two: try bolus feeds. Step three: try an anti-emetic like Zofran for nausea. Step four: Noah doesn't get a car when he is 16 because we spent all that money on Neocate - hahaha. Yup, it costs alot but if it helps long term, it will be so worth it.

Bits on retching: Retching is a common problem for children who have had a fundoplication surgery. The retching has been debilitating for Noah who has been having dozens of retching episodes over the course of a day. Jared took a video of Noah retching and if you are a person who is more visual and wants to see to understand better, email me and I'll give you access to the video.

Bits on oral feeds: well, they just aren't happening. Noah does try to drink from a Rubbermaid juice box from time to time but he is unwilling to put any food in his mouth. When I get frustrated, I find myself turned to literature to guide the structure of our oral feeding time. The newest read is "Just Take a Bite: Effective Answers to Food Aversions and Eating Challenges." It reminds me that I am doing my job as a parent well even if Noah doesn't eat "properly" or that he isn't just being difficult as if we're in a power struggle. He has underlying oral-motor issues, perhaps allergies or any number of other possible problems not yet identified. We don't want the bane of our existence to be that "Noah doesn't eat," yet it surrounds us daily - so we work to strike a balance. I try to focus on Noah and to have fun with food and not just focus on eating or putting food in his mouth (I have some great pictures to post later of my green avocado monster who smeared himself head to toe without taking a bite - that was a good feed in my eyes!!) We know from experience with the bottle that forcing only leads to further aversions and problems. I trust myself not to go there again! All we can do is offer food and learn to throw away a lot of unused stuff - how very un-Dutch of us!!

Bits of Gratitude: Noah is gaining weight and his height is catching up too; Noah is taking a full diet on continuous feeds; Noah is still happy despite cutting some nice upper teeth. Noah is having bowel movements on his own (thanks to the prune nectar); Noah is across from the playroom and such gets lots of traffic to watch. Noah's g-tube site looks "beautiful" according to the g-tube nurses - yeah!!! No more burning with silver nitrate for now!!! Thanks for the visits Oma, Geraldine (first as always!!), Meagan (and treats), Pastor Dan (coffee!!) and Julie-Ann (spoiled us with tons of food). We thank you for your prayers, for your emails, facebook messages, comments on our facebook status. I read it all but don't always get to responding too quickly.

Bits for Prayer: That Neocate would help manage Noah's retching. That Noah would sleep a bit better in hospital. That I (Dar) would be able to sleep better. That Dar's wean from the anti-depressants would continue to go well (completely off as of last week and taking lots of vitamin D and B). That Noah would not be experiencing too much pain that we cannot know about. That our meeting with "Family Support for Children with Disabilities" would go well next week (funding for respite etc.) and that they would consider Noah's situation despite his lack of a diagnosis.

Bye for now!

Saturday, July 10, 2010

Home coming, take 2 and picture gallery

Sorry for the delay in writing! Its been a busy week since we've been home. This time I think we will stay home for a lot longer. We are settling in nicely.

First, thanks for the many responses to our blog on songs that inspire. I love all the great songs, stories and poems that were shared.

We could have stayed much longer in the hospital; however, we choose to go home and work on the feeds with Noah. We now have a pump that regulates the speed that his feeds run in on. It means one more item to take out with us when we need to feed out and about but it seems to help Noah handle his feeds better - so it is well worth the effort.

I won't go into the details of our day - needless to say we need to stay focused and on-task to give Noah his feeds, complete g-tube site care, do some food therapy with him, attend appointments and of course not to forget about typical baby care. He is finally able to have some normal bowel movements which was a relief after having to resort to an enema in the hospital. Our nights are much easier now as Noah is on a continuous 12 hour feed. Jared gets up to fill the feeding bag once and Noah usually cries for a "vent" or burp through his g-tube a couple times a night which I handle. We've become quite the parenting team!! He is taking about 60% of his calories through the night which takes the pressure off the daytime hours a bit. We are still feeding every 2.5 hours in the day, but we have shaved off 1 feed since being home so now Noah takes 4 feeds in the day, each lasting 60 minutes. That's a great step forward for us.

On another note, I would recommend the following book - "More than a Mom: Living a Full and Balanced Life when your Child has Special Needs." A loving person in my life gave it to me and really I think it is a good book for ANY mom or dad. We are learning how to transform Noah's needs from struggle to strength. I love this quote from an experienced mom:

"The happiest mothers are those who have made the journey through all kinds of emotions to a place where they accept the challenges and embrace the life experiences it will bring them and their family. They are able to see the need as a catalyst for immense personal and spiritual growth (including reassessing one's priorities and values in life)."

See, that applies to any parent!! I hope I can grow into this quote each and every day. Thanks for reading. I hope you are treasuring the summer months.

Wednesday, July 7, 2010

Up, down, around and back again


The Netherlands wins the semi-final. I may have been one the few people at the hospital who cared about the World Cup yesterday, although I converted some nurses to cheer for the Dutch. I think my jersey helped, as did Noah's constant playing with a set of jingle bells during the game. It was a fun day and a good distraction from the stress of an on-again, off-again MRI.


Retching. We vent. He retches. He smiles. Repeat. No answers. Daily change in Drs., ideas, direction, medication. One foot in front of the other. Baby steps.


We may start feeding Noah continuously through the night. That is a workable plan for home (up every 4 hours just to fill the feeding bag). That means we will need a pump for home. It takes the pressure off the day feeds a bit, less volume, less time. He may start on some medication today to help with the retching. We are praying it works for Noah. It seems like taking steps back (he would eat 60% of his diet while sleeping and it takes us further away from oral eating), but now it is more about how we get home and help Noah get his nutrition. Baby steps.

Back Again

Sitting in our hospital room. My son sleeping. His tube feed running. My hands raised. The following to songs playing. Simple surrender. I sense God's grace. I see glimpses of Him all around - in people, in creation, in our precious son. Baby steps.

Matt Redman's "The Father's Song"

Selah's "Wonderful, Merciful Saviour"

(thanks to Brenda, my singing partner, for introducing me to Selah. Their music has been such a blessing to me over the years).

Can you share a song or poem that has encouraged you in the past or present?? Email or facebook me!!

Monday, July 5, 2010

House for sale and Letting go...

Thank you for all the lovely emails this weekend - we feel the love and prayers for our little family and it is certainly making the every day easier to deal with. A huge thanks for all the offers of food - we will definitely enjoy that help!

Our family has some news: our house is for sale! Here is a link to see our home profile with our realtor, Bill. See his webpage at:

Are we nuts? Well, we were planning to list our home. Since Noah and I are living in the hospital, it is an easy time to keep it clean and show it. We had been decluttering and cleaning lately (by-product of being home all the time!) so it did seem like the time to take the plunge. We don't yet have a home in mind to purchase. One step at a time.

I should also update you on my work situation. My school board, FFCA, has graciously granted me an additional year of unpaid parental leave. Thank you! One more worry lifted. Jared continues to do well in his contracting work - we feel blessed.

Noah is having a little nap before rounds begin. I'm sure we will be going to 2 hour feeds today. Noah is up to 40 ml of Neocate every hour, 24 hours a day (continuous feeds). We are slowly working our way back to where we were a week after his fundo/g-tube surgery. He had a retch yesterday but not since then. They have taken him off the medication that was administered on Friday and so now he is only on his anti-reflux meds. They have also saline locked his IV so he is no longer receiving IV fluids. Please pray that Noah will have a bowel movement on his own so that they won't continue to give him a suppository again.

And now for some blogging therapy. I was having a tough day yesterday. I was frustrated, and crying and confused. Jared was able to figure out why. He stated it so simply: "we just don't want to have to tube feed." It isn't about being in the hospital again. It isn't about seeing Dr. after Dr. It is having to accept a way of life that is so different from the norm. Now, I KNOW many of you have your own experiences. I am thinking of my dear friends/family who struggle with children who have severe disabilities, have experienced the loss of a child, struggle with infertility, battle cancer. I acknowledge that tube-feeding is nothing compared to those challenges. However, it is our journey and I've been reminded time and time by friends and family not to minimize the challenge we are facing.

To that end, my mom brought me a book called "Joy in the Journey" by Guy Rice Doud. I'm really blessed to have two moms who read good books and suggest them to me - thanks Mom D. and Mom V!! Anyways, Guy is a really neat author, a teacher, and someone who knows a thing or two about difficult life journeys. I was taken with the chapter labeled "Starting Over/Letting Go." Can you relate?

Here is Guy's take on letting go:

"Letting go means lightening our loads and abandoning all the excess baggage of the past, especially the bags with the tags marked guilt, shame, bitterness and unforgiveness."

"Letting go means being transformed by the 'renewing of your mind'. It means a whole new way of thinking."

"Letting go means praying, 'Thy will be done,' and meaning it."

"Letting go means not praying, 'Lord give me all these things I need!' Rather, we pray, 'Lord, give me what YOU know I need!" His grace alone is sufficient for our every need."


"Letting go, we surrender our need for control."

How can I pray for you today, in your own journey of letting go? Email or facebook me!

Dar (and Jared and Mr. smiles aka Noah)

Saturday, July 3, 2010

Weeks, not days....

Happy long weekend!

We are camped out at hotel hospital once again....I was warned by one of the Drs. that we will likely be here weeks rather than days. Thankfully, Noah is back on formula. What a relief as he is now 0% for weight and even his height is falling down the chart. This time the formula of choice is Neocate, a cow's milk protein free formula that you cannot purchase in the store. The thought is the retching is caused by an allergy? The theories just keep coming. Praise God, he hasn't retched since we drained his g-tube and began feeds again. Noah is receiving 20ml of formula per hour on a continuous basis. So do lots of cuddling, looking out the window and playing with toys. I gave him a bath this morning and I know he would have loved to have a big tub full of water....but the g-tube site isn't yet healed so we settled for a few inches of water to enjoy.

The other little wrinkle is that there is a norwalk virus outbreak on our unit. That means no visitors to the unit. However, I can meet people (and Noah too is he isn't napping) in the cafeteria. That is easier for me in the weekends since the week brings Drs. in and out and I don't want to miss them to discuss Noah's plan and progress. Noah's plan has already changed about 5 times in a day so I have to keep up!

Noah has been all smiles. He loves visiting with the nurses, volunteers and his special friends, the cleaning staff. They all seem to come by just to say "hi" and get a little smile. Teresa, one of the caretakers, even does a dance with her mop for him. He is having some trouble sleeping well at night so he tends to play for an hour in the day, followed by a short snooze. He is often interrupted in his napping attempts by Drs. etc. But we do the best we can.

Since we are going to be here a while, we would appreciate some meals and snacks, for those who are able and around. If you can contact my sister or mom to arrange same, that would be terrific. Thankfully, I was able to negotiate with the charge nurse so that my mom can visit the unit! Calling our cell phone, using Facebook or sending an email works great to keep in contact. In the daytime, email or Facebook is best as Jared will keep the phone for the daytime.

Here are three blessings of being in the hospital I will leave you with:

1. NOAH'S MUSCLE TISSUE they took out on the 15th of June, and the unofficial result came back NORMAL!!!!!!!!!!!! Without being in the hospital, we wouldn't have found that out until September.
2. The Drs are working hard to really make sure all avenues are explored for Noah - we can quickly get tests done as an in-patient. That is a huge blessing.
3. With my depression well managed, I am able to be with Noah 24/7. I like chatting with the all the staff and other parents, there is cable tv for the evenings, and free internet (thank you Jared for buying a laptop for me a few months back). Mostly, I love spending time with Noah.

Thursday, July 1, 2010

Try, try and try again!

Hello to all,

Noah was admitted back into hospital last night. He is smiling at anyone and everyone as per standard. Thank goodness for a boy with a wonderful personality. He is probably more okay with being away from home than Jared and I!

Noah had been retching for about a week but over the last 48 hours, it became worse despite us letting air out of the g-tube during feeds, after feeds, before feeds etc. I called the gals in Home Nutrition yesterday morning and they said to take him in to our pediatrician. So, while our house was being cleaned as a present (THANKS SHERRI!!!), we met Jared at the Dr. We spent time discussing options with the Dr. but ended up at the same place as I thought would happen - emergency room. Noah had an IV put in for fluids, they took some x-rays and blood and urine samples. Then we were admitted.

I've been feeling worried about Noah's feeds for a few days. I didn't want to overreact; however, I had the instinct that not all was well with his ability to tolerate feeds. It is pretty discouraging to be back to square one with Noah. To see him in his pink striped girl pjs does make me giggle - they are the only ones that fit over his IV. Not a worry, Oma just came by with a new pair of "boy" pjs for Noah - thanks Oma!

For now, Noah is only receiving the IV fluids. Tomorrow we'll start some pedialyte. They have given Noah a new medication to help with stomach empyting, retching and his esophagus sphincter...I'll spare you the details of why we are thinking this is the approach but there are, as always, many avenues to explore with Noah. We are in for a slow weekend and probably having to repeat Noah's story from birth time and again to new Drs. That is quite tiring for us. His chart is huge now (not as big as the one for our friend Connor, though!) Things will move slowly this weekend - Noah's needs to try to tolerate food again, plus its holiday weekend so the hospital moves at a slow pace as well.

Jared will stay will Noah again tonight....I haven't been sleeping well for days so it is a big treat to be home and sleeping in our bed. The only thing missing is my husband next to me and my son in the next room. Thank you Jared for being such a caring husband and father. I love you and Noah more than words can describe.

I'll try to give you an update as things progress, but likely it won't be for a few days. I haven't had time to really rest up after the last hospital stay, then coming home and g-tubing Noah 6 feeds a day (which took about 10 hours a day total), the stress of the retching and now back into the hospital for an undetermined period of time. Thankfully Jared will be with me on the weekend and then I'll be able to rest up before the week begins again.

Thank you for your prayers. That is all we really need right now.