Real Life, Blinders On For Safety!

Sometimes I feel bad from disconnecting from others with kids Andi's age.  Then I take her to Costco, and I see a kid half her age sitting up in the shopping cart.  It's hard.  It's a hard that no parent should have to know, but this is our daily reality.  It reminds me that being sort of distant, is a way of protecting myself from the severity of our situation.  Seeing she's 0.01% on the weight chart -- it's one thing to see that on paper, or write that, it's another thing to see a kid half Andi's age twice her size.  It takes the reality of the situation and makes me face it.  Self involved, self-indulgent to avoid reality.... maybe, but I see it as a way of keeping my wits about me and enabling me to stay positive.

Andi's been doing really well lately.  She's up to a 100 ml boluses, four times a day, then up to 34ml at night, for 10 hours.  That's a lot of 33 calorie formula.  In addition to that, she's taking food by mouth two to three times a day.  With each feeding, she seems to be getting better.  Practice makes perfect!  Last week, she weighed in at 14 lbs, 7.5 oz's.  A good weight gain (4.5 oz's) for two weeks!  She's growing, even developing a bit of a belly.  We're working on it! Haven't yet resorted to Burgerville, but we might just have to do a Tillamook Cheeseburger & chocolate shake in the Cuisinart!

Today, Andi initiated a new member into the yanked-out g-tube Hall Of Fame!  Yep.  Member #4 is her Grandma!  Grandma was watching her today, and the dang thing got yanked out.  I was on top of a hill, it felt like a mountain to Maddux and I who ran down it, but I'd settle for calling it a very steep hill.  We got home despite dang stop lights, slow drivers and idiots in our path -- and popped the dang thing back in.  To me, now that I've done it several times, it's no big deal.  However, poor Grandma got to experience the fear.  The gut retching fear of what to do, who to call, how to handle, and honestly, panic.  It's panic inducing to those that haven't dealt with it, or know the specifics of how much time we have, how to handle, etc.  Grandma is probably in need of a trip to the day spa, after enduring the trials of our reality.  However, she did great and Andi is very sweet on her Grandma.  Hopefully, Grandma is able to recover quickly.

So, we continue to work this reality, with our blinders on for safety. Perhaps it is a bit lame to the outsider looking in, but to us, it's self-protecting from an already saturated soul of worry.

Aspiring To End Aspiration

Barium Swallow Study revealed that Andi aspirates on thin liquids. 

Aspiration is: 
Aspiration can occur when there are problems with swallowing and/or in conjunction with gastroesophageal reflux (GER). Aspiration can result from a primary swallowing dysfunction or from lack of coordination between sucking, swallowing, and breathing. Infants with increased respiratory rate may be at increased risk of aspiration.
Respiratory consequences of aspiration can be severe. When aspiration is suspected, families should be promptly referred for further diagnosis and treatment.

So ... what do we do about it?!

Treatment of GER. Please see section on gastroesophageal reflux.

Modification of the food or feeding positioning: Sometimes VFSS shows that an infant can swallow thickened feeds, foods with temperature alterations, or foods with other changes in characteristics. In this case modified feedings may be given. Adequate fluid, energy, and nutrient intake should be assured when modifications are made. This treatment should always be frequently and carefully monitored. Infants with nippling problems or GER may have difficulties with thickened feedings. Adequacy of fluid intake should be assured when feedings are thickened. For more information, see Feeding and Swallowing Disorders in Infancy by Wolf and Glass.

Pacing of feedings: Caregivers may promote more appropriate coordination of suck-swallow-breathe by helping the infant to "pace" the feeds. Referral to a feeding therapist is appropriate for further assessment and for caregivers teaching.

Elimination of oral feedings: Aspiration that can not be successfully treated in other ways may require at least temporary elimination of oral feedings. In this case, referral for ongoing therapies to maintain appropriate development of oral motor skills is essential if oral feedings are to be successfully reinstated.

Infants at risk for aspiration associated with BPD and increased respiratory rate should be referred to a specialist for management of BPD.

We're to work on the pacing of feeds, 3 times a day and no thin liquids - such as water or pedialyte by mouth, and no disolvable solids -- only purees. I'm hoping this won't set us back too long on a g-tube removal party I hope to throw with glee.  And to quote the lady who might've seen my disappointment at the news, said, 'hey, it's information and that's a place to start.'

Birthday Magic

Today is the birthdate of Andi's grandma, from whom she was named after.  Ma would've been 71 today.  I am too emotional to even write about Ma, how much I miss her, and how sad her not being here makes me.  Hopefully, Ma can throw us a little luck, as Andi is having her swallow study today up at the hospital clinic. We're hoping the swallow study shows just weakness, so we can fast track to getting rid of this leaky g-tube.  It is my belief that getting rid of that thing would resolve so many obstacles.

So Ma, if you would be so kind, please throw our lil' Bean some of your magic.  We could really use a little luck.

Happy Birthday, Ma.  We love and miss you!

Beany Workout!

A Glimpse

We're having quite a rough morning.  Andi's fever has been gone for several days, but today, her cough is pretty constant.  It was considerable enough that I felt compelled to cancel our audiology appointment -- hearing testing.  I just didn't think she'd do her best being unable to calm her cough, and her snotty sounding nose.  I've tried to sit her upright and do her morning feed in her high chair, thinking getting her off her back would help her clear her lungs.  She was pretty fussy, so I tried to vent her ... that is very difficult to do when she's in the high chair because you have to take the tray off with one hand, despite it containing all the distraction toys on top of it, all while holding the vent.  Then trying to get the milk back into her stomach... it just doesn't work well.  So, I tried to prop up the vent tube in a blanket where she wouldn't kick or grab and dump it.  I ran into the kitchen to get a bottle, to drain the milk so I could lay her down and reprime the mic-key and then re add the milk.  Well, I wasn't quick enough and when I came back from the kitchen -- which is maybe ten steps away... the icky milk was on the floor.  After this debacle, I laid her propped up on her contour pillow.  She fussed, I vented with not a lot of luck.  She kicked at the tube I held a few times, disconnecting & spilling the contents all over her contour pillow cover.  From there, I held her in my lap while I worked, which was the most successful attempt at calming the cough.  However, after a good ten minutes of coughing during her feed, she puked all over me, the couch, herself.  A nice thick slimy mucous filled puke -- my favorite!  So then I had to change everything I'd just put on both us the prior hour.  I feel bad because I got a little angry, a little frustrated.  Some days are just hard.

Now the Bean rolls around on the floor in another outfit, coughing occasionally.  She's having a good time.  She's occasionally staring at the TV upside down, kicking her feet and entertaining herself.  I have noticed that since she puked, she isn't coughing quite as much.  Maybe that's what needed to occur.

The other night, Andi awoke super early with a hacking cough.  Her feed stopped because I think she puked or such.  I ended up bringing her upstairs to sleep on my shoulder in the rocking chair/recliner.  Without her g-tube plugged in, and not having a feed filling her stomach, she didn't leak all over me.  We snoozed for awhile in the chair. However, after awhile, I thought it'd be nicer to stretch out in bed, so Andi and I returned downstairs to sleep in the bed.  Having a child with a leaky g-tube, and constant overnight feeds, sleeping on Mom's chest has never really been an option for us.  However, this morning was special, as it was a little more "normal."  I absolutely loved snuggling with the baby bean.  It was most precious.  When we awoke at a reasonable hour, Andi was laying with her head on the pillow next to me, my arm drapped over her.  Daddy awoke to find his cub next to him, and it was probably one of the best family morning's we've enjoyed.  Those simple little experiences that most parents probably overlook as a given, for us, mean the world.  Although it could give way to all the expectations and "should-be's", I allow myself five minutes to be upset, then move on. Afterall, we have many more things to work on, as this rough morning comes to a close.  Bring on the afternoon.

Wellness Check -- Unwell Check

We met with Andi's pediatrician today for her 1 year wellness check.  Normally, this appointment would include shots, but since Andi has a fever - it wasn't recommended that she get them today.  Yep, the snot monster has given her a fever -- which means either ear infection or aspiration pneumonia.  Both are treated with antibiotics, so it doesn't matter what it is -- the treatment is the same.  She's already on a low-dose amoxicillian to keep the UTI's away, but, this one, Augmentin, is going to hopefully fix whatever is ailing the Bean.

I know I can't expect to keep her in a plastic bubble, but ding-dang people... a cold to a kid that's already been through the tenth layer of hell is a lot harder for them to fight than you or I... keep your fricken germs to yourself, capiche?

During this "wellness check" (sarcastically laughing in disgust because the Bean is not well), her measurements were done.

Weight: 14 lbs 3 oz (0.01%)  --> up from 13.1 oz on 4/12.
Length:  2' 2.24" (0.75%)  --> up from 2' 1.75" on 4/12.
Head Circumference:  16.73" (1.88%) --> up from 16.5" on 4/12.

So.. one small step forward, another step back.

The Snot Monster Returns

For Andi's Birthday, she was given the greatest gift on Earth... a cold.  **editing colorful monologue here**  Yep, Andi has a cold.  It doesn't help that it's still only about 55 degrees here, rainy or my favorite, 'looks-like-rain!'.  Hopefully she didn't inherit my immune system, because it HATES rainy-town U.S.A.   So, little Bean had to shout out to her OT that she wasn't feeling well, so her appt. this week has been rescheduled.  Bummer.  But, working out when you aren't feeling well - no fun!  Luckily, she's on her 2nd hour of snoozing.  I hope she sleeps a long, long time.  When I get sick, I hunker down and sleep.  That seems to be the only thing that works for me.  Otherwise, not only do I share my germs with others, I share such a great attitude... whoa!  I'm a hoot when I'm ill!

Yesterday evening during her feed, Andi yanked out her g-tube doing acrobatics under her blanket that covers her tummy.  I smelled the sour formula (I'll leave it at that) and didn't think much of it.  Noticed how wet she was, and uncovered her stomach to find a big hole with no g-tube. It was a bit of a shock.  I was able to put it back in, but have no idea how long it was out.  Well less than a hour.  But, scary regardless. 

Tomorrow, we're off to see her pediatrician, for her 1 year wellness check.  I'm assuming 'wellness' = shots!  Yippie.  I'm looking forward to the weigh-in and the measurements... height and head-circumference.  Hoping for big, big numbers. Andi's been tolerating more feeds than required, but since she still leaks, occasionally pukes, or somehow doesn't get a full feed - I've been giving her the additional amount.  Hopefully, it amounts to something considerable on the scale.

I've noticed that if she misses a feed, her skin gets pretty dry.  I've been real bad about getting the water or pedialyte flush in between feeds.  I probably should make more of an effort on that, especially when a full feed doesn't occur. 

However, the new toys she got for her birthday are making sitting in her chair a little bit easier - because she's rather entertained by the new gadgets!  Today, she took two cups and clapped them together.  Something her OT mentioned she should be doing awhile ago.  When she saw how happy I was, and soaked up the praise, she smiled and laughed.  She really looks at your response, and seems to do well with praise...hmmm, just like her fur brother!

Her latest hearing aid mold was just brought by, as the last two went M.I.A., so, we'll have to get working with the new one asap.  We have new books to read, toys to hear, and much to audibly stimulate.  First things first though, we're using sleep to combat the snot monster's return!