Thursday, February 25, 2010

Why G-tubes are better than NJ-tubes

Seraph has a G-tube for food and meds.  She has lots of oral aversions and doesn't eat orally yet.  You can read about her G-tube here.

Before her G-Tube, Seraph had an NJ-tube which is a tube inserted through the nose and threaded down to the tummy. (NG-tube is to the tummy, NJ-tube is threaded all the way down to the small intestine.  This must be placed under floroscopy at the hospital)

Many preemies have an NG-tube.  It's fine when they're tiny.  But as they get better at grabbing things, they're always taking it out.

When the doctors started talking about a g-tube for Seraph, I searched the blog world for pro's and con's.  I didn't find much.  So, I wanted to weigh in on the subject.

I LOVE LOVE LOVE Seraph's G-tube.
-her oxygen stats are noticeably better without the constant tube in her nose.
-she used to get nosebleeds all the time when she had the nasal tube. (Blood thinners are common for CHD kids, so the bleeds would be hard to stop.)
-it was impossible to suction out her nose for colds (which did lead to worse colds)
-We can easily vent her tummy (this is like burping - but easier to do! plus Seraph can't actually burp now that she's had a Nissan to correct her GERD.)
-easier to place the g-tube--faster and you can do it at home!!!  (Yes, you have to carry the kit with your baby all the time, but after you do it the first time you realize it's not that big of a deal - like putting a ointment and a bandaid on a ouchie)
-her oral aversions have lessened (but not completely disappeared) since giving up the nasal tube.
-no more taping her face -- red, raw, weeping skin on her cheeks
-once she learns to eat orally, the g-tube hole closes up naturally very quickly :)

There have been a few bumps in the road. Here's some tips to help you avoid them
G-Tube Problems and fixes:
1-Dehydration. When Seraph was learning to crawl, she was flat on her tummy a lot.  She was more mobile, so she gained muscle and lost an appropriate amount of weight.  Result: the g-tube was too big.  It leaked while she was sleeping on her tummy.  She lost all her fluids all night long.  In the dark, I just didn't notice the crib sheets were wet.  It cost us a trip to the ICU to get her re-hydrated.

Prevention: Check g-tube size.  It only works if it's snug against the underside of her skin.  If it's snug with 4 gauze pads, that's OK.  If you need more than 4 gauze pads, it's too loose. You can GENTLY pull up on the g-tube to see how far it comes up.  (You'll notice when you're cleaning the site, anyway.)

IF it's too loose, you need to get a new size.  If you can't (like there's a wait-time for how soon your insurance will cover it, or while you're waiting for delivery)....instead of gauze, you can use 2 pieces of toilet paper or ½ a piece of a tissue, rolled up like a cigarette, and then wrapped around the tube.  The idea is to lift the tube enough so it's right next to the under side of her skin even when she's on her tummy.  (don't pop it out)  Wrap the rolled tissue around several times and then tape it down. The kleenex/tissue won't get wet because the site won't leak.

ALSO:  ask your doctor if you can replace spilt feeds with an equal amount of Pedialyte.  This will prevent dehydration and keep your baby out of the hospital. (Pedialyte has powder mixes now, too.)

2-Granulation tissue--raised, sometimes painful, red tissue which can develop at the hole in the skin.  Granulation tissue can bleed and promote leakage of stomach contents through the stoma onto the surrounding skin.

fix/prevention:  Mix 20ml water with 2 drops Eucalyptus Oil.  Use a cotton ball to clean the site with this Eucalyptus-solution every time you clean it.  You can use this instead of soap because it's a natural disinfectant and antiseptic.  The skin will heal, the site will work better.

Write "G-TUBE ONLY" on a tube of your favorite diaper cream.  Use it only for the skin around the gtube.  This protects the skin if some of the stomach acid leaks.

I know it sounds crazy, but it's really so much easier than before.  Plus, she's happier and more mobile.

So if you're in that "should we really get a g-tube" boat, worry less and just go for it :)

Tuesday, February 23, 2010

Hey Safire - Look Who Loves Horsies!!

No Problem!

I can waste whole days calling my insurance, doctors offices, and hospitals trying to work through "misunderstandings".  (There seems to be a misunderstanding--I don't owe you money.)

Yesterday, a medical-related company called me with a RECORDING telling me I needed to call them back ASAP.  The recording had already started when I answered the phone.  It was on continuous loop.  Confusing! So, I called back.  Was on hold.  They asked for personal info to verify my info!!  (Hey, you called me!) We sorted that out then they transfered me to the department that wanted to verify things with me.

That's when they accidentally hung up on me.  I had to call back.  Normally I'd be totally "GRRRRRRRRrrrrr'ing" by that point.  Instead I just pedaled harder.  That's right - they happened to call when I was on my exercise bike!  By the time I sorted through the mess, I'd burned an *extra* 150 calories and gone an extra 2 miles.

Instead of feeling frustrated and aggravated and harassed, I felt refreshed and ready to take on the world.  Now I'm not saying I'm going to jump on the exercise bike every time I have to call someone.  [Thank heavens I wasn't panting :p]  But it was really cool :)

Wednesday, February 17, 2010


There's one charity that I look forward to donating to every year.  I'm upset when they don't ask for donations.  A mysterious someone leaves a note with a bag on my door and every door I can see.  The note asks for shoes.  Old Shoes, new shoes, crazy shoes, any shoes.  You put the shoes in the bag and then leave the bag on the sidewalk by 8am the next morning.  Before I leave the house, the shoes are gone - off to some place in Africa where someone will get some good use out of them.

I think it's run by someone who goes to Africa as part of a Doctors Without Borders program.  I just can't part with any shoes now that I know the shoe faerie might be coming to collect them.  So, I hang on to all the shoes my kids trash and outgrow....just hoping the shoe faerie will stop by.

Well, she came by today and I'm pleased as punch!

I hope she finds good homes for the shoes we were able to part with.

Do they have shoe faeries where you live?

Tuesday, February 16, 2010

Just for Fun, too!

My SIL over at Living in Maryland celebrated the Chinese New Year by finding the Chinese zodiac animal for each member of her family and reading them out loud.   Even though today (the third day of the new year) is not a good day for socializing or visiting with friends/relatives, I'm going to look them up for my family.  [For those who don't know, I'm forever copying my SIL.  I even had my twins a few months after she had twins.  I can't help myself.  She's just that cool!]

Sexy Haqon: OX
Born leaders, Ox people inspire confidence from all those around them. They are conservative, methodical, and good with their hands. However, they can be at times chauvinistic and demanding. In fact, the strength of an Ox person comes out in great shows of deter-
mination, obstinance, and defense for what they believe in. Although they enjoy their private life and doing things on their own, Oxen are strong, dutiful and reliable. They construct firm bonds with their home and family, and while not the most romantic of the animals, Oxen make affectionate, faithful partners and lovers. 

Chinese Horoscope

Chinese Horoscope

Honest, Loyal, Popular, Sincere, Steadfast, Reliable
Stubborn, Impatient, Inflexible, Narrow-Minded, Sulking

Me:  Rabbit
Rabbits are people everyone likes to be around -- Affectionate, obliging, and pleasant. However, can get too sentimental and sometimes seem superficial. They keep out of disputes, even if they have to turn a blind eye. Rabbits are emotional and even selfish when it comes to enjoying themselves, but they would never deliberately hurt anyone. Even though they seem quiet (and even unattentive), their intuition and intelligence gives them the diplomatic skills to distance themselves from bad situations. Well-groomed, mannered and always fashionable, the Rabbit's conservative exterior hides a love for fun, which catches other people off guard. Rabbits excel at assessing a situation and providing a solution when the time is right. They are sensitive lovers, and seek a partner who can offer security in life. 

Chinese Horoscope

Chinese Horoscope

Astute, Thoughtful, Refined, Docile, Wise


Cunning, Snobbish, Possessive, Fussy, Obsessive

Beautiful Rabbit: Dragon (no surprise there)
Full of vitality and enthusiasm, Dragons are popular individuals, despite being seen as foolhardy or "big-mouthed" at times. They are intelligent, gifted perfectionists that are demanding of others. Their intolerance usually causes a stir, but Dragons enjoy attracting attention, and prefer demanding situa-
tions to everyday rountines. To Dragons, rules and regulations are made only for others. They live, act, and think big, but their pride and self-confidence can prevent them from accepting help when they need it the most. Self-reliant and sufficient, they can survive without close relationships, but are energized with companions that share their wavelength.

Chinese Horoscope

Chinese Horoscope

Resourceful, Self-Assured, Adaptable, Original, Valiant, Enthusiastic


Arrogant, Hot-headed, Unpredictable, Critical, Irritable, Discourteous

Strong Bear:  Rooster (like his cousin, Butterfly!)

Roosters are hard workers; shrewd and definite in their decision making, often speaking their minds. Because of this, Roosters seem to boast. They like to put all their cards on the table and respect those who do the same. Roosters love to mix socially -- They are dreamers, flashy dressers and extravagant. They love to attract attention and admiration, and and get angry when someone steals the spotlight. Despite being melodramatic, they are exceptionally practical, logical, and have excellent powers of discri-
mination. This leaves them with high standards of excellence which at times frustrates others. Although they attract many suitors, they are loyal, level-headed partners make a commitment. 
Chinese Horoscope

Chinese Horoscope
Passionate, Resilient, Patriotic, Industrious, Courageous, Protective


Conceited, Blunt, Rude, Bossy, Aggressive, Impatient

Delightful Finch:  Dog
Dogs are naturally honest and faithful to the ones they love. Dogs seem to specialize -- they find an hobby or interest they enjoy and stick to it. Unfortunately, most Dog people are plagued by worry, a sharp tongue, and a tendency to find fault in things. They have a sense of justice and fair play, and are particularly good at finding logical solutions to problems. As far as Dogs are concerned, it is the people that count. Trustworthy friends and good conversationalists, Dogs have a tendency to hold grudges until appeased. Despite having a temper at times, they need loving, stable relationships. Once they've found their mate, they are faithful for life. 

Chinese Horoscope

Chinese Horoscope
Devoted, Resilient, Unselfish, Honest, Resourceful, Reliable
Nosy, Cynical, Cantakerous, Pessimistic, Anxious, Introverted

Angel-Roo and Seraph:  Rat (like their twin cousins!  Oh my!)
Rats are imaginative, charming, and truly generous to the ones they love. However, Rats have a tendency to be quick-tempered and overly critical. At ease with company and groups of people, their intelligence and observation allows them to quickly grasp a situation from multiple perspectives. Rats know how to spot opportunities and seize them, but their opportunism, ambition and restlessness can lead to too many commitments. Don't be fooled -- although shrewd in business at times, Rats are passionate lovers, with a depth of feeling that is seldom recognized by others. 

Chinese Horoscope

Chinese Horoscope

Charismatic, Sociable, Intelligent, Affable, Quick-Witted, Popular


Exploitive, Calculative, Secretive, Greedy, Acquisitive, Devious

Look up your own family's zodiac animals HERE and post it somewhere I can peek. 

Dirty Feet

Playing with Seraph today, I went to kiss her feet but they were too dirty!  It's these tiny moments that bring tears to my eyes and I pause to thank God for how far she's come.  I can't remember the last time I was so happy to mop my kitchen floor. 

Here's to many more years of dirty feet to come :) 
I love you, lil girl!

[And, yes, I managed to find some time to work on that heart-baby book today.  Thank you for your wonderful support :)]

Sunday, February 14, 2010

My Bright, Bright Sun-Shiny Day...

[Pictured:  Beautiful Rabbit, Strong Bear, Delightful Finch
Seraph, and Angel-Roo]
The sun came out today just long enough to take everyone outside for some playtime!

We're applying for disability and medical aid for Seraph.  Her congenital heart defect (and complications) are on the the disabilities list.  The latest form asked me to compare Seraph's activities and abilities to that of a normal child her age. Angel?  My mom told me never to compare my twins.  Twins HATE that!!

Mom also taught me to be optimistic.

It was physically and emotionally draining to write out all of Seraph's challenges from birth to present.

I have learned soooo much over the past 2 years--warning signs, tips & tricks, precautions, etc.  I'm thinking of writing a book.  I love writing.  There are so many things that I wish someone had mentioned to me - things that could have helped Seraph not spend so much of her first years in the ICU if only I'd known them sooner.  Plus, maybe writing it will help me pull out of the funk that her disability forms have smashed me into.

Friday, February 12, 2010

Yarrow for Yucky

I feel yucky today. Feeling too tired to make tea, so I'm sucking on some yarrow flowers.  It should help settle my tummy and keep me from throwing up.

I'm sitting here hoping it was some kind of food poisoning.  Beautiful Rabbit and Sexy Haqon both felt yucky after eating Valentine's cookies last night.  OR it could be a flu type bug.  Someone who visited a few days ago started feeling yucky.  

So far I've just felt queasy, but Angel threw up.  But she's so little, sometimes she throws up after she's been jumping or spinning.  The other kids seem fine.

So, I have to hope for food poisoning because Seraph didn't eat anything.  If she throws up, her electrolytes will get all out of whack and that could mean an ICU stay.

Either way, I should feel better tomorrow.  and today is going to be oooooh-sooo-not-productive.


Wednesday, February 10, 2010

Seraph Update

Look at that happy girl!  Notice the eye-teeth? She's still working on some of them (Angel is getting them in, too.) It's scary because Seraph will wake up screaming in pain.  Last night it took me an hour to calm her down - holding, rocking, singing, and patting her tummy.  (That's after I gave her Tylenol).  Part of me worries that her pain is from something else - something more serious.  But, it comes and goes and acts a lot like teething.  And, Angel's going through it, too.

Besides, look how happy she is!

Notice that her nasal canula is clipped to her shirt instead of taped to her cheeks. That's because she refuses to let it get anywhere near her face.  We've switched to 4 L oxygen on blowby.  This time, we try to keep it clipped to her so she's always sitting in a pocket of oxygen.  The cardiologist told us that this was acceptable for her heart condition.  (She doesn't need the positive pressure from the cannula, just the oxygen itself.)

Physical Therapy today!
Seraph loves standing; loves shuffling around to get toys that are just out of reach.  Today we practiced putting her down between my legs so she'd have to step over my leg to get anywhere.  She is good about picking up her right foot, but likes to just drag her left foot.  (She balances best on her left foot, so she's more scared of falling when she's off it.)

Seraph makes sounds more often now!  "Aaaaaaaah" is still the running favorite.  She talks to her toys now, instead of just reacting when people talk to her.

She also LOVES to dance.  She sways back and forth to the music - but not every song.  By far, her favorite song is ABCs/Twinkle Twinkle Little Star.  She could listen to that all day long!!  (no, really)

Monday, February 8, 2010

Signed, Witnessed, and FAxed!

I have sooooo many forms to fill out!  Taxes.  Insurance.  More insurance.  More insurance.  Bills.  Waivers. Releases.  Oh my!  Then I get to the end of HUGE forms and it says "this complies with the paperwork reduction act."  Excuse me?  How long were these forms before they passed that act?

My husband recently started his own law firm.  (He's a patent attorney.)  The amount of paperwork to get Seraph's Insurance switched over is just staggering!  Then, just when I thought it was all worked out, the new company gave notice that it's their annual open enrollment, so we have to fill out new forms!  Oh my!!

I think I'm just about done with forms for a while.  *knock on wood*

Despite all the extra stress, we had a great weekend.  Gma & Gpa & cousin S came over to watch the Super Bowl. (great game - even though I was cheering for the Colts.)  Haqon's brother (who had an unexpected night lost in the snowy mountains) was found alive and unharmed :), friends from church visited.  Usually I'm exhausted and crabby by Sunday night.  This weekend I felt refreshed and optimistic for the first time in months!  I'm not sure how it happened, but I hope we can have a repeat next weekend.

...don't send me any more forms!  I'm on break!! ~~~~~

Friday, February 5, 2010

Angel Roo

I wish I could pick what she learns.  I would've picked:  after 7 stitches in your finger, learn to NOT play with scissors.  Instead, she picked:  learn to push the chair around the kitchen *before* you climb on it so you can find cooler things...and then sword fight with those things.

Then she picked: turn on the cute button when Mom catches you so you won't get in trouble.  Ya...that sooo works on me.  I tried to yell, but she looked so proud of herself...and then offered me the weapons with a smile because she knew her turn was over.

Finch takes toys away from Angel all day long.  Seraph steals all the attention--getting cheers for simple things like standing up or taking a step.  Angel pushes herself into the therapy sessions to show that she can already do it!  So, while I wish she'd grow some fear of sharp things, I'm happy that she's not too scared to be herself.  Glad she's not slipping quietly into the shadows.

Way to go, lil Roo.  Now put the sharp objects down and  put your hands on your head.  Wouldn't you like to take a nice nap?...maybe suck on a binky? It's OK....remain calm....let's go find Elmo!

Thursday, February 4, 2010

Wednesday, February 3, 2010

Thank You, Scooby, for teaching my kids about scooby snacks!

Delightful Finch went potty 3 times today!  Strong Bear says it's not fair that she should get a treat each time she goes potty when he goes potty every time.  Hmmm...OK.  So, each time Finch goes potty, everyone gets a Scooby Snack.  They just have to tell her, "thanks for going potty, Finch".  and, yes, they bark like a dog.  Then I pat them on their heads and say, "good puppy."

After a while, the treats aren't enough and she asks for a diaper.  I tried pretending I didn't hear her once.  She finally just went and put on a diaper herself (backwards).

I don't want to push her too hard.  It has to be her idea or she'll never go for it.

Angel follows Finch around and copies everything she does.  (except going cool would that be??)

Tuesday, February 2, 2010


Our heart baby hates food.  The doctors didn't prepare us for that.  She hates touching food.  Sometimes she'll tolerate smelling it.  New textures are icky!  (and all textures are new.  Her favorite texture is the thin, smooth oxygen cord...or any cord, really.) We feed her through a G-tube for now. She loves spoons and cups, but won't touch food.

Seraph loves her new mobility, but still hates eating.  Today we played a game where I put Scooby Snacks (the graham cracker kind) in her hand and then she puts it into my mouth.  I don't think she knew it was food.  She loved the game!  She even put the Snack in her mouth a few times!  Mmmmm, cinnamon! 

After, I thought she might want some water.  So, I cradled her and gave her drops of water from a tiny bottle.  On a whim, I sucked on the bottle loudly to show her.  Then put the bottle to her mouth.  She sucked out water!  No, you don't understand....all babies know how to eat but she just doesn't.  She hasn't sucked on a bottle since before her 2nd heart surgery--at 4 months of age!

We played with the water a bit, and then I switched it out for some (vanilla flavored) formula.  Success!  She drank 4ml of formula, and then another 3ml of formula.  Yay!!  She passed her swallow study months ago, but it never mattered as she wouldn't let anything in her mouth.  (Except the barium.  Boy does she love the taste of barium.  Think bitter.)

It's been so long since we had any progress in the food department.  I'm sooooo excited for her speech therapist's visit (Thursday).

She finally explored far enough across the kitchen to find the toy cupboard!  I've been wondering how long it would take her to find it.  In the past, she's avoided the kitchen because she likes the feel of the carpet much more than the tile.  I think the toys will win out from now on.  It happened after the other kids were in bed.  They're going to be happy for her, too.

Good job, lil girlie :)


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