4th Birthday Photo Session

4th Birthday Photo Session

Tuesday, November 29, 2011

Snapping Bean

I was able to catch a bit of snapping Bean late last night. 

She was pretty tired, although she felt that it was more fun to hop out of her bed a few times and roll around on the big bed.  I left the room to get Maddux and when I came back, Andi had jumped out of her bed and was rolling around on mine, heading for the edge of the bed.  Super scary stuff.  I guess I can take all the extra bedding I have and stack her bed so she's not so deep.  I really don't want to lock up my back regularly because I have to bend over her bed for long periods of time.  Super big dilemma I have to figure out quickly.

There was an article on the news recently about OT's have had some success using certain applications on an Ipad, with kids with developmental delay. 

Since I'm not sitting on a $500. pile of cash, I'm trying to find if the amazon fire would do the same thing for half the price.  As much as Andi loves gadgets:  cell phones, TV, remotes, etc., I think she'd do really well with a touch screen device.  It'd be worth it if helped her advance quicker.  Plus, it would be highly entertaining on the five hour plane ride she will soon enjoy. 

Andi has become increasingly interested in all things eaten by others.  Last night, she shared some tomato soup with me, and was so eager to have some - she was constantly trying to stand to get some more.  Pretty cool.  Now if I could get her to suck down some grilled cheese - she might pack on the pounds!

Lastly, Andi has gotten a bit of the dramatic going on lately.  Her "all done" has now become "A-a-a-L-L-L-L-L   D-D-U-U-U-U-n-n-n-n-n-n-n-n-n-n!"  It's pretty cute.

Monday, November 28, 2011

THANKSGIVING - 18 Months Old

Again this year, we are so very thankful.  We have survived and persevered through another year of trials, tribulations, and have celebrated many successes.  I think I've been too busy to really stop this Thanksgiving, and reflect on where we've been and look forward to where we're going. Now that the holiday has come and gone, it's high time I negotiate my list of things for which we are thankful.

We're thankful for the usual suspects.  Family, friends, employment, a few bucks in our wallet, two reliable cars, food in our pantry, a roof over our head.  However, as our readers realize, our list is much brooder than just the regular list of gratitude.  First and foremost, my praise for Dr. Zallen & his team, who successfully turned a leaky g-tube from hell, into a new g-tube site that doesn't leak a drop.  He probably doesn't fully realize how greatly this has improved our lives.  We still appreciate and are still committed to being eternal personal slaves to Dr. Langley & team, who successfully repaired Andi's heart defects.  There have been countless Dr's, nurses & undeniably important people whom have helped us fix, improve, strengthen our bean -- and for all of them, we are incredibly thankful.  We have dietitians, feeding specialists, Kajsa - our OT, Mary - our audiologist, the once in awhile PT, ENTs, and the people we see more often than not -- Dr. Cohen and Shawnee.  The whole office knows when Andi is coming in, she's apparently spoken of rather fondly around there!  There have been so many people playing such a huge role in our lives, whether they know it or not.  Even if they're just listening to me whine or unload a bit of my heavy mind, or, laughing at my stupid jokes - even if they're beyond ridiculous... I am thankful.

I'm also thankful for a few new updates!  In the past four or five days, Andi has only puked once!  (...and I wasn't here to witness it!)  Her need for venting is rather rare.  Her stomach is seeming to tolerate the new formula well.  I was adding some water to it, now that I finally got to the store, I've switched that to pedialyte.  She's having heavier diapers (that means a lot in Andi-speak... as it is how we've always measured hydration - whether she was on lasix or not), she's pooping more often, and she has taken her largest amount of formula for the day yesterday, 800ml.  At 30 calorie formula, I just hope that keeping it all down is going to warrant a weight gain.

I'm also pleased to report that Andi is interested in food that other people are eating, and likes the social aspect of eating.  We've found that if we sit down together and eat, she's more inclined to participate.  She's been enjoying some mashed potatoes and gravy, sweet potatoes, and she even tried a few nibbles of scrambled eggs.  I even have her working with a sippy cup that has some water in it.  Although water is still not allowed, I am not putting juice of any kind in that cup as she tends to like to throw it on the floor.  She hardly gets any out, and so, we're going for it.  Mostly, she likes to hold it and chew on it, but, most importantly, is interested! 

Today, I was looking for something and happened to pull out of the cabinet a wash tub that Andi took her first bath in. I couldn't help gaze down at the incredibly tiny tub and have trouble remembering how small she used to be.

When I was giving her a bath today in her bathtub in the sink, I couldn't help admire how big she is getting.  Long, she's getting rather long.  We're both recognizing that the baby is leaving and we're living with a little girl now.  It's been rather fun to notice the transition.  She's about .25" away from being at the max height for her car seat, and we're going to have to switch to a different car seat for bigger kids.

Andi has also been working on using some signs.  She mostly mimics me, but I've got her signing, "more milk", "friends", and pointing to various parts of her face.  She was caught Friday night pretending to snap her fingers, again, mimicking me - but still...  it was pretty cool.  She's also getting herself into a sort of 'sitting position' from being on her hands and knees.  She's leaning forward and holding herself upright, but, she's doing it! 

Again, rather thankful around here.  Thankful to be done with all the hard stuff we've been through, thankful that she's improving and getting stronger, and thankful for the future where we'll certainly look back on all things we've overcome.  It hasn't been easy, but, we're getting there.

Wednesday, November 23, 2011

WANTED: Magic Potion

Today, we met with Andi's pediatrician, to review the puking situation. We got to see Andi's favorite nurse, Shawnee. We see them more than anyone, and they both are very sweet on Andi.  Andi loves her, but is still unsure about her Dr.  Sometimes she entertains him, and sometimes she gets super upset, cries, blows snot, spits up, swats his hands away.  It's pretty funny, at times.

Anyhow, Andi lost 2 oz's since Monday.  She weighed in at 16 lbs, 2 oz's today.  Could be due to a lesser total amount of food she got yesterday, or it could be due to the lesser amount of calories in this different formula. 

We decided to keep her on this formula, as GI will want to see that she was on it a week or two.  I've started adding pedialyte to the formula to thin it a bit, and to keep her fluids up.  Of course, I ran out this morning and I refuse to go to the grocery store today, which is undoubtedly a zoo.  I can add some water to it for the remainder of the day.  This formula is so thick, we feel that it hinders the ability to vent the air out of her stomach.  Also, when she pukes it comes shooting out her mouth and nose... which increases the risk of aspiration, or inhaling the formula into her lungs.  So, by thinning it a bit, we hope to keep her hydration up, and keep the consistency a little thinner. 

The Dr. didn't feel that she was at risk at all, and has networked Andi with a few other people to help us figure out a game plan on how best to deal.  Luckily, this means that we're going up to the hospital for a feeding clinic evaluation, where we'll be meeting with our favorite dietican Audrey -- whom also adores Andi.  Not to brag, but cut me some slack, she's admitted that Andi's her favorite patient!!!  Oh yeah.  Anyhow, we'll be going up there at some point.  Another thing that might occur is a PH study.  This would be an overnight stay at the hospital where they shove a tube down her throat and measure the amount of acid that comes up over a 24 hour period.  Sounds dreadful.  Her Dr. thinks her reflux is causing her to puke, I still maintain that its her stomach having a lot of air - which causes pressure to build up and Andi pukes because of that.  But, what do I know?  What I do know is that we're going to start with a visit with Audrey and a pediatrician up there, our feeding specialist might stop by too... and then take it from there.  By then, we can determine if this new formula is having any positive impact on Andi, and check her weight again to see where she is.  Maybe they'll have the magic potion. 

Tuesday, November 22, 2011

Baby Butterball

Although our pediatrician called and said he'd prefer to see her on Wednesday when he's back in the office, we felt that we would keep the Monday appointment with the sub Dr.  When we spoke with her (sub Dr) on Friday, it was mentioned that she could go back into the hospital to figure out the puking thing.  So, we felt if that was going to happen, we'd rather get her in there earlier in the week, rather than the day before Thanksgiving.  In any case, we kept the appointment and Andi weighed in yesterday at 16 lbs, 4 oz's.  That's what, 6 oz's in 13 days.  The ideal is that she would gain 1 oz per day.  So, that shows us that what we've been doing isn't working to the ideal level.  She didn't feel that Andi was in danger, or dehydrated, but then again, she doesn't know Andi.

So, we're going back to see our regular Dr. on Wednesday morning, the only day of the week he's in the office.  Our dietitian is also back in the office on Wed's.  So maybe between the two, we can figure out what is going on.  Her Dr. said on the phone that her reflux is causing issues.  We've increased the prilosec to 4ml. She's still coughing during the night.

Today, I've decided to increase her feed to 155ml (5 ml is really a tiny amt) and do five boluses.  That would get her to 775 ml for the day, and then we'll skip the overnight drip.  It doesn't prevent the gurgling/coughing reflux.  But, it keeps her from needing to be tethered to the gtube at night, which is part of the reason I don't sleep well.  The coughing is the other reason. 

So, may our pediatrician be struck with some genius tomorrow, or have a working magic wand to fix this problem.  Can only keep hoping for improvement.

Saturday, November 19, 2011

Formula Change

As I decided it was time to write the dietitian to see if there are any more tricks in the bag to get Andi's weight up, her Dad said it was high time we figure out why she's puking so much, so we can stop it.  Many hands in the pot, but it has resulted in the decision to try a different formula.  The pediatrician covering for our usual Dr., called up a GI Dr. up at the hospital (Doernbecher's) and that Dr. suggested changing to Peptamen Junior.  It's fewer calories, but seemingly more tolerable to finicky stomachs like Andi Bean's.  The formula was delivered the same day, (one of the few times in life I feel V.I.P.! anymore!)  We started rocking that formula right away.  I also switched her to a five bolus schedule last night, since her nap ran so late, she was up late anyway... I only put in about 20 ml at night to flush her nighttime meds.  Yesterday also marked her largest daily amount of formula put in.  Her stomach looks bigger today to me, but it could just be bloated by the larger amount of food going in.  This new formula is 30k/cal, whereas her Neocrack cocktail was 36k/cal.  So, as is, it's less calories per day, but, it's less rich too - so maybe she'll tolerate it better?!  The sub. Dr. also increased her Prilosec dose from 2.5 ml to 4 ml, hoping that would help.
So far, I haven't seen much change.  The girl still pukes.  This morning, as I loaded her in the car to take a friend to the airport, I started her feed.  She was at maybe .4 ml and she started puking.  It had been easily more than six hours since she was fed last.  But, she apparently had a lot of air in her stomach, so she spit up what looked like saliva.  Once the air or pressure is released, she's fine.  She tolerated the full feed after that.  The next feed, she tolerated all of that too.  The third feed, she tolerated until almost the end, then she got fussy.  Fussy is usually a sign that she has pressure in her stomach, or she's simply bored sitting in her highchair and wants down.  I vented and got nothing.  I let her down, she was fine in Daddy's arm.  Then, he hands her to me and without warning, a surprise spit up.  No warning.  It wasn't a lot, but it still warranted a shirt change for Andi.  Then later, in bed - trying to get her down for her nap, she fussed, I was slow to get the vent, and then it came up.  All over the fresh sheets I just put on the bed.  Again, it wasn't a lot, but this one was thick and foamy.  It'd been in her stomach awhile.  I was able to vent some air out. 

My only guess is that she swallows a lot of air throughout the day.  It builds up and it either comes out one end or the other.  It's faster for it to come up. If the pressure builds, she's gonna blow.  I don't know how or if they can fix that.  My guess is that her digestive system is really immature.  She's never had to really digest full feeds, digest air, process anything much more than formula.  Now that the leak has been sealed, it's as if her system is trying to catch-up, but it's slow.

I don't know what the cause, really, but I sure hope it stops soon. I also hope that I'm not imagining that her stomach is getting bigger.  The sub. Dr. has us coming in Monday afternoon for a weigh-in and follow-up to the formula change.  We'll see.  So sick of saying that sometimes.  What's odd is that I'd just unpacked another three cases of Neocate, 12 cans at almost $40. a can.  If we do make the switch, I hope the enteral feeding place will take those back.  I don't think they will after a few days, so, maybe I can get me some Christmas spending money via eBay?!?  I'm TOTALLY kidding!!!!

Just for the record, I'd gladly take the puking over the old g-tube leak any day!  So, let's hope this formula change is the recipe for moving on and moving upward on the scale.  Change for the better would be very, very appreciated.

Tuesday, November 15, 2011

Feeling Better ... sorta

Things are starting to settle from cold #572.  Andi has been coughing at night, and that makes for really restful sleep for me, ...NOT!  Between having to check on her, to calming Maddux who gets extremely nervous when she coughs, Momma Bean is a bit overtired.  Oh well.  Last week, as we laid in bed to watch TV, Andi was rolling around in her bed adjacent to mine.  She sleeps in a playpen sleeper.  It started out with a newborn sleeper, now it's on the mid level bed, but it has the ability to be lowered to the playpen bottom.  Here's the photo from when I first assembled:

So, now she sleeps at the "halfway" point of this, although, due to reflux, I have a stack of blankets or quilts on one end trying to elevate her head.  So, again, we were watching TV in bed the other night and low and behold, miss squirmy worm decided she no longer wanted to chill in her bed alone.  So, what does she do?  She rolly polly's in her bed and then gets her feet out of the side of her bed and manages to pull herself out of her bed and onto ours.  I didn't believe it at first, so I put her back in her bed and she got up on the elevated side, and pulled herself out again.  It was funny, and super duper scary at the same time.  Progress, but a set-back, still the same.  The next night, I decided I needed to lower the bed to the bottom of the playpen.  It is pretty low.  It was especially scary because she feeds at night and has the g-tube cord in her bed with her.  Normally, I just roll onto my side and she's a short reach away.  If I need to vent her or clean up puke, I've been pretty close and it's been relatively easy to handle.  However, on this lowest level, yikes-o-rama.  Having to bend over the railing in the middle of the night and hold a vent tube for several minutes, yeowza.  Despite just starting to take a yoga class, I'm not that flexible, or strong!  I'm still trying to locate my ab's from pre-pregnancy days.  All I did feel was a strain.  That low level bed was not working for me.  I don't have enough blankets or padding to throw in there to raise her up to a safe level, so either late that night or the next day, I ended up putting her bed back to where it was... despite knowing that she has figured out how to escape it.  Either that same night, or more likely the next night, due to the end of my cold, I coughed in the middle of the night.  "Uh-Oh", I felt my back tighten.  That's not good.  The next morning, by the time I got upstairs, I was crying in horrid pain, my back was completely locked up and the pain was horrific.  The worst back pain I've ever felt. 

That was Sunday.  I was worthless.  Coughing or sneezing was the worst.  It would provoke a back spasm and even more tightening.  It was awful.  Monday wasn't much better, so I called and got myself in for a massage Monday night.  OUCH!  People cringed when they saw me hobble in.  They checked me in without a blink, and I hobbled into the waiting area, "the tranquility room".  A lady already waiting in there saw me and said, 'uh oh'... and all I could really muster was 'uh, yeah... '  The massage therapist had his work cut out for him, and he really beat me up good.  He was able to get my back to unlock, but because one hip was super tight, the other side of my back was super tight.  I honestly need another couple of hours of work to really get it all worked out.  However, today my body hurts. It feels like I'm bruised, and I wouldn't be surprised if I was.

Because of Andi's & my cold, we haven't done much work this past week+. We haven't done the gait trainer, no oral feeds, just trying to rest and recoup.  Also because of the cold, she's been puking most feeds. Because of this, today I started a new system of giving her a half of a bolus, then rest, then the other half (total = 150ml), then rest, then start a new half bolus, then rest... etc.  And instead of doing four boluses and a nighttime drip, I would like to try to do five boluses for a total day of 750 ml.  Her current goal as I can tell is between 750 - 800 ml a day.  This way, maybe I can get to the point where she doesn't have to feed at night, and thus, reduce her reflux incidence.  Although it's been handy to get more calories in slowly overnight, it's also made me chronically exhausted because I'm constantly having to wake and check on her, listen for gurgling - which indicates a need for venting, or she is about to puke. Worrying that she will roll over and wrap herself up in the cord, or worst case, pull out her g-tube.  It's just a lot of worry that is impacting us, in every aspect of life.

So, now that we're feeling better, we're back to working on all things.  I am a bit concerned with her lack of oral feeds since her last surgery on her nose.  But, now that the snot monsters are gone, we can start really working on that too.  Although, feeding some every other hour, she probably won't be hungry at all.  Ugh.  I guess the most important thing at this point is getting the calories in, and keeping them down.  Without that, nothing else will work.

Wednesday, November 9, 2011

Plugging Along

Andi got her longer G-Tube placed yesterday, as her stomach has grown outward a bit.  She was weighed and came in at 15 lbs, 14.2 oz's - which is an increase from the 15 2.3 or such two weeks prior.  So, we're making progress, albeit slower than I'd hope.  Again, now that it's November, in the course of the past 11 months, Andi has put on 3.5 lbs.  3.5 lbs in 11 months.  Fathom that. I can go out to dinner and put on 3.5 pounds in one meal.  I think she measured a skoosh longer, but that measurement has been so up and down, unreliable.  I find that super annoying.

In any case, Andi has seemingly come down with a cold again, or the last one is visiting again.  She's coughing and has a runny nose.  I know people around town are also suffering long term ick, but, I wonder at what point will this get better.  I'm to wash hands, use hand sanitizer, but for someone who sticks their hands in their mouth often, what am I to use on her hands?!  Obviously, that might be the area to work on sanitizing.  This chronic cold bit is getting rather old, especially when I hear a kiddo slightly older than Andi down in my hometown is just now experiencing his first cold.  I can't help but slap my own forehead and wonder what the hell we're doing wrong.  We're on cold #9 or such, and that's not an exaggeration.

The Kaiser dietitian wants me to increase her daytime boluses.  I'm working on it, but it's been tough.  She's puking about once a day.  Today, that happened in her crib. So, in addition to washing her outfit, I get to wash her sheets today.  Yippie.

What I haven't admitted here, is that Andi has seemingly made attempts at crawling.  I haven't yet seen it, so I haven't written about it.  She is definitely excited about standing and crawling position when she wants to.  She will roll over, get into crawling position, hold it, then lower herself, roll over, and then get back up in crawling position.  It's pretty entertaining.  I haven't seen real movement, but I'm watching for it.  She seems strong on some days, other days, she seems rather wobbly.

I have found a warm water pool to take Andi to for open swim.  They have two nights a week, for one hour that I can take her.   I haven't been able to take her yet, but her OT believes that this will help her immensely. Now that she's snot-nosed again, I have to wait again until next week.  Ugh.

In the meantime, we'll keep plugging along.

Tuesday, November 1, 2011

HAPPY Halloween!

Although I was wiped-out before we even began, our lil' ladybug trick or treated three houses. Before we started, our neighbors came to our door and brought Andi a pumpkin bucket of goodies. There was a Halloween book, a big ol' talking stuffed turtle, and a stuffed Muno - from Yo Gabba Gabba.  Apparently, they've walked by and heard that we were watching the show, so the kids decided to give Andi their old toy.  Pretty dang thoughtful people.