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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!