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Friday, November 4, 2011

Hair Cut

 Well we did it.  After Matt's consistent pestering that martin's hair was too long, and he didn't want a son with a mullet, we cut his hair.  Now his fauxhawk isn't as obvious.


It did end up looking nice, although Martin would try to convince you otherwise.  He hated every minute of it.  Dad buzzed the back for him, and I attempted to trim the top without cutting my finger.


So my baby boy, looks more like a little boy now.  Expect that his hair is still pretty thin, so he looks a tiny bit bald.

Wednesday, September 14, 2011

Wordless Wednesday


Friday, August 5, 2011

Martin Update

I've been neglecting blogs lately.  All of them!  It's too hot to focus on writing things.  That's the excuse I'm going for. :)

However, in talking with my sister the other day, she mentioned her sisters-in-law asked why I haven't updated Martin's blog in a while.  I felt guilty, and reminded that people DO read my blogs.


It's official folks, we're O2-free!!  We turned everything back to the provider earlier in the week.  And he's doing awesome!


We've gotten a few other internal problems sorted out as well, which makes for a HAPPY Martin.  Which is way better than the "I haven't pooped in days and it hurts!" Martin, which we saw much too often.


We're now ready for the trip out to see Grandma Llewellyn, only a year later.  Everyone but me and Martin got to go last September, and see all the cool sites--like the Statue of Liberty.


These two have been getting along wonderfully!  Only Martin is starting to get a bit mobile. . .not crawling or scooting (he's starting to get that one figured out) but he spins around on his bum, and can almost (purposefully) move in directions besides a circle.  Tryn's in trouble when that happens, because Martin is a true brother already--taking everything that is 'hers'.


Martin's working on TWO molars right now.  He's got a LOT of teeth, which is great!  8 in the front--the top 4, and bottom 4, and two molars on his right side.  Now we're anxiously awaiting the other two to come in, because he's NOT liking this process (and it's wearing down mom as well!)



And here he is today!  You can't see it, but he's sitting in a PILE of toys.  He's a grab and toss boy.  Picks up a toy with 1 hand, shakes it (sometimes) passes it to the other hands, and tosses it over his shoulder.  If I keep a bucket on each side of him, he'll put it in the bucket, which helps the mess.  Then he'll pick up the bucket and dump it.

Yeah, he's a boy. :)

Sunday, May 22, 2011

Making Martin's Food

My grandparents recently gifted us with an AMAZING gift.  A Blendtec blender.  The kings of blenders!!  (although some might say the VitaMix is the king) Want to watch it blend up glow sticks?  yeah, that was pretty cool to watch.


Ever since we started the blenderized food diet for Martin, everyone has been so supportive.  It was a choice we didn't make lightly, we put a lot of thought and research into this concept.  We started slow, with baby food mixed with milk.  Then we added baby cereals to the mix, and then oils.  Then I borrowed my brothers magic bullet, and I actually blended up cooked pasta, tuna, fruits!!  It was amazing, and so much fun.  Who would have thought I'd actually care how many calories things have??  Not me!

So I start out by deciding what Martin needs that day.  I usually base that off what he had yesterday--fruits/veggies, protiens, etc.  I like to vary it up.  If he had a mix with fruits yesterday, then I'll make a mix with veggies.  I'm trying to get back into the habit of making 2 mixes--a fruit mix, and veggies mix, that will last over two days.  Then he gets 2 meals of fruits, and 2 meals of veggies usually. 

Once I decide what he's getting, I count the calories.  If they're low, I sometimes alter what he's getting, picking another veggie that has a high calorie count.  He needs at least 1000calories a day, otherwise he just doesn't gain weight.  But he needs it to be low volume so he'll keep it down!!  That's the hard part.

Here's today's recipe
1 avocado--350calories
1 pear--95calories
3oz of tofu--70calories
1 cup cheerios--150calories
1 cup milk--150calories
3tsp milk fortifier--70calories
2Tbsp oil--240calories
probiotic powder

The total calories came to be  1125, which is awesome!  Maybe Martin can get some chub. 


Threw everything in the blender, and turned it on!!  It runs for about 1 minute or less usually, and then I pulse it a few times, to make sure everything's blended up good.  It usually is fine.

Transfer it to another container.  Yay nalgene!  I usually use a mason jar, but I didn't have any clean ones!  This mix made about 26oz, which is more than martin can handle usually, so we'll end up adding the leftovers to his nighttime milk. 

Then I add hot water, and a bit of soap.  Run the blender again, and it's clean and ready for the next item!

And that's how I make Martin's food.  Thank you grandma and grandpa!!  I already love this blender, and it's on the "if the house catches on fire, I'll grab. . ." list :)

March For Martin

First, a HUGE thank you to everyone who helped us meet and SURPASS our goal for March For Babies walk this year.  I had no idea what we were doing, I just knew it was important to us as a family.  The March of Dimes program did so much for us, and Martin while he was in the hospital.  It isn't just medical things they help fund, although that is very important.  They give families support and they go to bat for you if you're struggling to get doctors on the same page as you. 

We walked on Saturday the 14th.  I had NO idea how big of an event it was!!  There were thousands of people there, all in support of the March Of Dimes.  And not just families who had babies in the NICU, but businesses as well.  

 Here's some of our Team that came and walked with us--My sister Amber, Katryn, Matt's mom (holding Katryn's other hand) and Matt's Grandma. 


And the rest of us!  Matt's pushing the stroller, I've got Martin in my Ergo carrier (which is AMAZING!!) and my mom.

They gave us beads to wear--Purple for being on a family team, Blue for having a NICU graduate, and I wore my bedrest survivor beads, and Martin's NICU survivor beads (he has to necklaces, his stay was so long!)  They also had white beads for those who had Angel Babies.  Thankfully we didn't need those!

Martin crashed as soon as we started walking, and slept through the whole walk.  I made a little sign to carry, with pictures of him after he was born, and a more recent picture.  I also threw in some stats: 77days early, 141 NICU days, his birth weight, and then some current things: Gtube fed, O2 junkie, and med free!!

It was an amazing experience, and a tradition I think we'll continue with!!  Martin even had a pretty good time!!  We saw a few nurses from the NICU who remembered Martin, and our good friend, the NICU's March of Dimes rep, Rachel. 

The quilt I'm giving away to one of our donators (which I still need to have katryn draw a name for. . .) is coming along!  Hopefully be done by the end of the month, and the lucky recipient can forever remember Martin and his first March For Babies.

Can't wait until next year!

Thursday, April 28, 2011

HAPPY BIRTHDAY!!!

My dear Martin turned ONE on March 12th.  I know, I know, I can't believe it's been a year already either!  (or that it took me this long to get pictures up!)  We had a nice party for him, which he was kind of overwhelmed by a little bit I think.

 We managed to get a few smiles out him, even though there were lots of people there, and lots of craziness!

 And then he panicked when he touched the cake.  This boy and food, I don't know what I'm going to do with him!  We were really hoping he would just get in there and at least play with it, but he didn't do any of that. 
 He finally broke 15lbs the morning of his birthday.  Barely, but we're counting it!  it's such a struggle to get this kid to gain weight. 

Katryn (in the pink vest) and some of his other cousins were more than willing to help him open presents.  He was ok with that, because he didn't care much for them.

Thursday, March 17, 2011

Happy Late Valentines Day!

Happy late Valentine's Day from Martin! For a kid who refuses to eat food, he sure loves to put everything he can into his mouth.  Everything BUT food.  He wanted to eat this card like crazy!

On another note, Martin's blended diet is going so great.  I've got our 'beginning' feeds figured out.  He has a low tolerance for large amounts of volume--3-4oz is his limit, if I don't want to clean up puke (which I DO NOT).  I've been able to create a formula that involves baby food (currently still one at a time, to monitor for allergies), baby cereal, juice, tiny bit of oil (high calories, and good fats) and thin out with formula.  Enough to give him the calories he needs for the day, but not give him too much volume.  The difference so far is wonderful.  We used to deal with puke within 30 minutes after every feeding, or in the middle if he started coughing (which leads to gagging, then puking), or sometimes if he tasted food it would trigger his gag reflex.  Now?  It's been cut in half.

IN HALF!!  that means I'm not changing his clothes 4 times a day, I'm not running out of burp clothes or bibs, I'm not having to change MY clothes as much. 

The way I figure it, with all the puking he was doing before, he's getting more calories now, even though the number is the same, since he's keeping it down.  That will lead to weight gain, which we need.

I'm making sure to keep him with plenty of fluids also, I give him a 2-4oz of water throughout the day.  So far, according to the information I have that tells me how much fluid he needs a day, he's right on track!  I'm excited that it's working so well. 

I'll keep trialing new fruits and veggies, and soon I'll be trialing milk products, so we can GET RID of the formula!!  woot!! 

And here's our birthday boy!!  I'll post more pictures later, but I can't quite believe he's 1.  Wow, what a year we've had!!

Wednesday, March 9, 2011

Starting the new feeding

As I've been doing my research on blenderized diets, it's becoming more and more clear to me why I'm going to do this.  Just because my child has a feeding tube, does not mean he shouldn't be able to have to benefits of real food.  He doesn't need a special food.  Yes, he needs a liquid food, but it can have some variety to it. 

Here's some stats I'm using as my starting place:

Martin currently gets:
950mls of formula per day=31.6oz per day
40-50mls juice per day=about 1.5oz per day
760calories per day from formula--24calories per ounce
approx 15-20cals from the juice per day

Per feeding: 
10mls of juice=5cals
150 mls(approx 5oz) of formula=120cals

I've also gone through all the baby food jars, and boxes of baby cereal I have and figured out how many calories per ounce they each have. 

So I'm starting like one would start an orally fed baby--1 food at a time.  Right now it's sweet potatoes, which is a food he doesn't seem to mind orally either.  As opposed to some of the others that just the taste/texture causes gagging/retching/vomiting.  I'm drawing up his normal 150mls, and adding 1Tbsp of sweet potatoes, 10 mls of juice, and his normal daily other medications/supplements (actually right now, he's just on a daily probiotic).  Since it's still thin enough, I'm able to use the pump to feed him--he hasn't been tolerating gravity feeds since he got sick a couple weeks ago. 

And I'm still doing lots of research, trying to figure out how to get everything into his diet, so he gets enough liquid, enough calories from all areas, and still grow.  there's not a lot of info out there, it seems to me that if you're baby's tube fed, and not taking anything orally yet, you just keep with the formula, which makes me sad.  Food and eating is such a big part of our life, that I want Martin to enjoy it as well.  There's just no where out there that says "your child is Xyears old, and they need this much liquid per day to stay hydrated, this much protien, this many carbs, and total calories should be this much." 

I really need to find a pediatric dietition who would be on board with this idea, and help me figure out how much Martin needs.  I can only go so far myself.  and I'm worried that his pediatrician won't be on board.  In which case I would be going forward without his support anyway.

Sunday, March 6, 2011

Blenderized Diets

I'm starting some new research for Martin, as he nears his first birthday.  I'm exploring the idea of blenderized diets for him. 

There not a lot of information out there. . .I'm weeding through it all, trying to find as much from people who have been there and done that.  Thankfully I have a few tube-feeding forums i visit, with very helpful parents who are willing to point me in the right direction!

Somedays we have success with Martin 'tasting' some food.  Most days we have gagging, puking, crying, hands shoving spoons away, throwing things off the tray.  It's a real exciting event.  The dogs love trying to lick the spoons/bowls/plates/syringes that drop before I yell at them. 

Anyway, I'll keep you updated, once i figure out a game-plan, and a way to start.  Hopefully without having to buy the $40 book!!

Wednesday, February 16, 2011

Wordless Wednesday

I never get a chance to see his face like this.  I've only seen it without anything on it a handful of times.

Wednesday, February 9, 2011

Feeding Tube Awareness Week (Wordless Wednesday)

Feeding time!  Yes, he'd rather eat a strap than the tasty food I'd try to give him.  :)  Thank heavens for our lovely tube!

Sunday, February 6, 2011

Feeding Tube Awareness Week--Day 1


Today is the first day of Feeding Tube Awareness Week.  The goal of this Awareness Week is to educate, and spread awareness to as many people as possible!

This video is put together through the Feeding Tube Awareness site, and features a lot of kids and babies who have feeding tubes.  There are so many medical reasons, and having your baby get a tube it a LAST resort for parents.



Martin has many reasons why he was given a gtube.  Prematurity was just a small part in the conglomerate of complications Martin had involving eating.  The largest reason was his lungs.  His lungs are so severely damaged, and no Doctor was ever quite sure WHY.  He was hardly on a ventilator, about 24 hours.  The damage in his lungs was as bad as a baby who had been on the vent for weeks, not hours.  And over time, it wasn't getting better, it actually got WORSE.  He was given the diagnosis of "Chronic Lung Disease". Which is kind of a catch-all of "we don't know why your baby can't breathe well, and isn't responding like other babies to the treatments.  Since he's x-weeks old, and still on O2, we're diagnosing him with CLD, or Bronchopulmonary dysplasia (BPD)."

He wasn't able to develop an O2 reserve that most people have, which makes him tire easily, and makes feeding VERY difficult.  The little energy Martin had stored up, was used up VERY quickly when he tried to eat.  Because of that, he could only take small amounts, and the rest was pumped into his belly through his NG-tube or OG-tube (nasal-gastric-tube, oral gastric-tube).  He was never able to take a full feeding orally.  Never.

As his O2 requirements went up and down, and up and down again, he wasn't able to eat orally at times.  If his requirements were TOO high, it was too easy to have his belly fill up with air instead of food when he was eating orally.  Then as time when on, his reflux was aggravated from tubes being pushed down his throat so many times, and just from being premature, that he was diagnosed with GERD--Gastroesophageal Reflux Disease.

And thus the oral aversion developed to the point where Martin couldn't tolerate ANYTHING in his mouth, without gagging and puking.


So with a combination of horrible lungs, horrible reflux, and horrible oral aversion, Matthew and I made the decision that a gtube would be the only way Martin could eat until he grew out of those things.  His lungs are getting better, his reflux has almost disappeared, and Martin loves to stick everything in his mouth.

And now we're trying to teach Martin the skills he was never able to learn as a baby.  He wasn't able to master sucking, and so he can't take a bottle.  He never learned how to swallow anything, so he panics when food is in his mouth.  He doesn't know what to do with it, and so sits there with his mouth open, until he oftentimes drools the food out, instead of figuring out how to move it around in his mouth.


These things take time, and Martin's time-table is the only method we can use, and we accept that.  He will learn as he's ready and comfortable.  Forcing him to eat will do no good for him, OR for us as his parents.  It might be months until he's comfortable with food in his mouth, and can figure it all out.  It might be years.


This is why Martin has a tube.  And it's a large part of who he is.  Someday, he'll show off his scar and tell people that is where he was attacked by a shark, or a bear, or some out-landish story like that.  He'll be proud of where his tube is, and share his story with everyone. 


I *heart* my tubie boy.

Wednesday, February 2, 2011

Wordy Wednesday

Our little family is walking in March for Babies on May 14th here in Utah. We’re thrilled to be helping the March of Dimes by walking together for stronger, healthier babies. Team March For Martin is walking in honor of our son Martin, who was born 11 weeks early; much too soon. The March of Dimes works to understand and prevent the problems that threaten our babies and supports local programs that help women have full-term pregnancies and healthy babies.  Although we wish we wouldn't have been put in the situation of having a baby who required use of the research the March of Dimes helps support, we're grateful they were there to help us as a family have the support from people who have been in our situation, and understand what we were going through.


Martin spent almost 5 months in the NICU, and without the March Of Dimes family reps (yes you Rachel, and Becky!) I wouldn't have made in through those months without being institutionalized.

The March Of Dimes was there when I needed them, and we want to return the favor, and I’m asking you to help, too. When you sponsor our family in March for Babies, you make a difference in the lives of babies and their families — right here in Utah and across the country. You can make a donation to team March For Martin at marchforbabies.org/team/marchformartin. You can use your credit card — it’s easy and secure, or Pay-Pal. Or you can send me a check or cash in the mail. Send me an email at krystal.lynn (at) gmail (dot) com and I can give you our address. Any amount you can give will mean a lot.


As in incentive, every person who makes at least a $10 donation to team March For Martin, will be gifted with a "Fight For Preemies" bracelet.  For every $25 you donate, your name will be entered into a drawing for a quilt (unlimited entries! and sorry, no pictures of it yet).

I also want to invite you to walk with us on March For Babies Day--May 14th.  Maybe ask your friends and other family members to walk with us, or sponsor us and help us exceed our goal!  You can join the team on our fundraising page or from marchforbabies.org (search for March For Martin).  You can send this blog post onto your friends, family and other contacts to help spread the word.


Thank you so much for your support!  if you have any questions about signing up to walk with us, or donating, feel free to ask, and I'll do my best to help you!

Wednesday, January 26, 2011

Wordless Wednesday


For a kid who refuses to eat, he sure loves to stick EVERYTHING in his mouth! (that's his feeding tube he's chewing on)

BFF's!  Moya likes to lick and chew on Martin's hands, and Martin likes to grab anything within reach.  It's a good fit.

Thursday, January 13, 2011

Wordless Wednesday. . .On Thursday

Wednesday, January 5, 2011

Wordless Wednesday

Picture taken today--Wednesday January 5th, 2011

Saturday, January 1, 2011

Since We've Been Home

I have obviously neglected Martin's Blog.  What can I say, this kid takes up a LOT of my time.  But he's worth it!
This was Martin's set-up when he came home from the hospital.  It was ridiculous!  We've since arranged things better, and it's not so crazy (although we still have all that equipment).  You has the portable O2 tanks, for when we go out, the feeding pump and stand, the high-flow O2 blender/humidifier thing, the O2 concentrator (takes the room air, and turns it into pure O2), the O2 compressor (just takes the room air so we can blend it) and the pulse-ox to monitor his heart-rate and O2 levels.  Yeah, it's a lot of stuff.

He's got such a great big sister too, who loves to spend time with him, singing to him, reading to him, giving him kisses.  She's so great with him.  Every night when I put him to bed, she has to come in and sing him a night-night song. 

And for Halloween this year, we just couldn't resist dressing Martin up as a "Doctor in Training"  He's had enough experience I think!

As for medically, Martin is slowing getting healthier.  In November, his PEG tube was changed out to a Mic*Key Button (it's kind of like a beach-ball valve) which had a huge difference.  He was quite the refluxie, pukey baby--going through 4-5 outfits a day, a dozen burp cloths, a lot of blankets, and laundry EVERY SINGLE NIGHT.  It was like night and day since we got the button.  He's happier, he doesn't puke at all now, it is wonderful!

He also had some follow-up visits with the pulmonologist for his lungs.  He referred us to the cardiac department where we had some tests done to make sure his heart wasn't working to hard.  It's doing wonderful, and is nice and strong, so we're now able to start weaning him off the oxygen!  it'll be a slow process, but I think he'll do great.  He's already on 1/2 L when we go out, and his sats are awesome. 

We've also been working on oral skills.  That's an even slower process.  he will never take a bottle, and he refused to suck on anything.  but he'll chew on anything and everything he can get his hands on.
Yes, his oxygen tube is a built-in toy!  We are working with a therapist, who comes once a week.  He have learned that the thicker things are, the better Martin will tolerate them.  He probably takes about 1 Tbsp of rice cereal a day, nice a thick, and about 3-5 of those little puffs (like cheerios, but Gerber brand).  We break of little pieces of them, and he enjoys moving them around in his mouth. 

We celebrated Christmas Eve by having his first tooth break through!  (bottom left, if you're wondering) Woo-hoo!  We were all MUCH happier after that point.  Although tooth number 2 is almost through, so we've reverted back to crankiness. 

There you go!  A quick update.  :)  I have plans to keep up better with the New Year.