Elijah Joseph

Uh-oh

2009-05-15T11:52:00.002-06:00

We have a word!!!!

Sir plumpy

2009-03-19T11:50:00.002-06:00

E finally broke the 19 lb mark! 8640 grams, for the non-metric people that's 19 lbs .6 oz

Hooray for McDonald's french fries!

Transformation

2009-03-02T11:10:00.003-06:00

Just a haircut and E looks like such a big boy now :(

They said he couldn't do it

2009-02-13T10:12:00.003-06:00

E's physiatrist said he would probably not be able to stand/walk unassisted. Hasn't E already shown most of the medical world that he doesn't understand "No"?

Granted it was only for the 3-seconds it takes to snap a picture, but still E is doing it!!!!

It's toddler time

2009-02-05T20:13:00.004-06:00

Ok cheesy title, but cute pics to follow.....

Standing with Dad

We started the photo shoot with a shirt....until I noticed E must have had another bloody nose. Poor guy, he really looks like a fighter in this pic.

Sitting up is old hat now

E's already figured out how to pull these diapers off

Wait, I didn't take my diaper off yet Mama!

Back to playing toys

Getting sleepy...

Day in the life of E

2009-01-15T14:43:00.007-06:00

Always a charmer

C/p, Sorry I don't have time to retype everything for a different recap for my blog,
We had E's periodic review yesterday for his IEP and his teachers attempted the preschool transition part. I refuse to send E to school when he's three, so we just skipped over that part. No idea if he will continue school therapy after May, but I'm going to talk to his ped to see if she wants to appeal to continue home based services on a medical exemption or if we will switch to private.
E met a few goals which was really exciting. He is sitting really well and can lean now in sitting to grab a toy & regain his center of balance. Still working on getting in and out of sitting position, but I can see that coming soon. He's managed to come up with his own way of movement. Smart kid figured out his head is the heaviest thing to move, so he does the ostrich thing and buries his head into the carpet, straightens his legs up behind him and pivots. Must less work that way
We're discovering his continuous feeds to be a PITA now that he rolls everywhere. He is constantly disconnecting himself and we have tummy sludge all over my living room. So I've been leaving him off for the hours when he's out in the living room. But thankfully his new found independence has led E to want to eat whatever Mommy is eating. And he found a love for bakery cookies, french fries and pop syphoned from the end of a straw
So he's not loosing weight with us doing ~18-hour feeds. The most fun lately has been E's massively expanded play skills. He LOVES container play. E sat up at dance for close to 2 hours with a plastic coffee cup and 3 small cotton balls. Putting them in, taking out, putting in, banging, dumping out, etc. I think we're making progress on the cup thing. He will at least be in the same room as a sippy cup now and will occasionally use one for container play as long as the lid is not in sight.
We have lots of work to do on language skills. We where brainstorming with his speech teacher on what we could do to help him develop some source of expressive language. E still have very minimal receptive language, so it's hard to get him to communicate with even a big talk switch or pictures if he doesn't understand a connection between words/pictures and the item he wants. E does know the universal two-year old communicator (ie full blown temper tantrum), so that is what we hear most days.
Still loves his movies. New favorite is Handy Manny and Wall-E.

It's been forever since I've blogged. I just thought I'd share pictures of a typical afternoon in the life of E.

On the move....

His favorite toolbox. E already threw all the tools out this morning.

Gumball machine is a favorite. Everything goes "in" and not just the balls that are meant for the toy!

More things that need to go "in"

Taking a break

Crawling Eli-style

Determined

2008-08-23T21:26:00.003-06:00

To stand.....

To clap....

To suck on toes....

To get the cat....

Oh shoot, E forgot she moves....

To roll over....

And to be...

Extremely....

Cute!!!

Stud muffin

2008-07-19T01:26:00.003-06:00

Just a shameless post just to show off pics of my cute little boy.

TV dinner

2008-06-29T21:04:00.003-06:00

Dinner and a Rat

E LOVES Ratatouille. He's so predictable on what parts he finds funny. Yes, our son is holding a medical syringe while he eats. Oh, the funny things medically complex kids find comforting.

Tricking the toddler

2008-06-29T13:16:00.003-06:00

We took E to Mayo on Monday for a follow-up GI appt. Everything went well, his GI doc was actually pleased with his weight gain (HOOORAY!!!!)

While we where there I mentioned that E was starting to like to taste things. Great! Well, except that the foods he likes- vanilla pudding, potato chips, french fries, frosted animal crackers....
All really high in fat, which means lots and lots of poo. Probably not good choices for a kid w/ 1/4 of his bowel. So we decided to try E on a new diet. Yummy, yummy Gerber foods.

Ohh, Mommy bought me a new cookie

What the heck is this thing....

Get that doctor on the phone, this is just unacceptable.

LOL, well I guess E isn't ok w/ rice crackers. He polietly objected by taking each cracker, crushing them and sweeping his hands back and forth on his tray until every piece was on the floor. I talked to his GI doc again after we got home and got the ok to just give him tastes of what he wants. As long as he doesn't loose weight, he can poop as much as his little gut desires. I don't mind, E's happy, we use cloth, it all washes :)

Happy Fathers Day

2008-06-15T14:45:00.002-06:00

I know, E isn't a Daddy but he got a new gift. Check out our big boy!!!!!

This is a boy who puts NOTHING in his mouth. All of a sudden today, he decided tortilla chips where ok. So we ran out and purchased some "toddler" foods and finally a chair so he can join the family at meals. How awesome is E, his first high chair at two!

I'm trying to just enjoy today. Usually when E decides he can do something and the next day wants nothing to do with it. He did a bottle for all of 3 days before he decided to scream whenever he saw it. But here's to hoping he continues to enjoy self-feeding.

Look how happy he is :)

Go go power Eli

2008-06-07T00:16:00.002-06:00

We have our demo power chair for a week. E's getting a be a pro going around the outside of the house. We live in a split and no way to get it into the house, but E doesn't mind. He much prefers the outback experience, going over the grass and rocks on the higher speed. That's my boy.

Happy Birthday Baby

2008-05-18T02:07:00.003-06:00

Who knows what today is?
You didn't forget did you?
Yep, that's rightE's two (no E, not five)Now make Elmo dance for EAhhh, the simple pleasures of a two year old :)

Chubs

2008-05-08T15:48:00.002-06:00

Aren't they beeeeautiful?

Thank you Uncle Sam

2008-05-04T16:02:00.001-06:00

We where finally able to get E another bumbo seat. We had one Dec 06, but returned it the next day as E just didn't have the strength.

We where just at Target today and had our extra Uncle Sam money, so I thought heck why not give one another shot. And oh my gosh, does E love it!

We do have a few adaptive chairs, the only disadvantage is they are a lot bigger and have to be strapped on to another chair to make them work. The bumbo is so nice and easy. Just one piece and another plus is they now come with a tray. How cool does E look!

Best $50 investment EVER! I love this pic, E is just smiling while playing with his toys.

And gotta love husbands, he decided the toy wasn't entertaining enough so he turned him around.

And just a quick glimpse at our fun weekend. A swarm of little pink divas.

E says, "Lets do this!"

2008-04-05T16:34:00.003-06:00

Patience, faith and some good E stuff

2008-03-27T20:34:00.003-06:00

Words can not describe how happy Shawn and I are tonight. E moves! He is almost 2 years old, I honestly didn't know when/if this would ever happen. God is good :)

Enjoy the videos!

On the move

Go Eli Go!

Sharing the E

2008-02-24T00:47:00.004-06:00

Sorry, I know it's been a month since my last post. I have been soooo busy trying to keep up with my sewing. Here's evidence that I'm not just eating bon-bons and watching soaps, lol!

I thought everyone would enjoy some new E pics. He has been doing well. No hospital visits and all our sickies he has seemed to recover w/o any extra interventions. Yay E!

E is up to 13 lbs 2 oz and 26 inches. He looks so big to us! He's been working hard with his therapists and has really been tolerating so much more lately. On good days, he will stand for ~5 minutes in his stander or sit in his chair for 20 minutes. Even longer if his chickens are on tv :)

And he's been doing soooo much better at wearing his glasses. I think it may be starting to click that he can actually see better with them on. That or he's getting smarter in knowing Mommy will just put them back on when he whips the off :) We're not at wearing them all day yet, but he will leave them on for an activity. His absolute favorite is flipping the song page back and forth on his favorite toy from PT. We haven't been able to find it yet, but E LOVES this thing. His teacher forgot it last Friday, so we got to play with it for a few extra days. E cried when I tried to put it in his room with his other equipment from the school. Oh well, what's a few extra days of play :)

As soon as it gets warmer we will start working more on learning a power chair. It's a little hard to learn how to roam in the snow. Once E figures out how to work a switch, we can start the process of convincing MA that he needs one. We've already bumped heads with insurance in trying to convince them that he's almost TWO, even though he is the size of an infant :(

Anyhow, lots of uphill battles and appeals coming our way. But we have lots of great therapists that are working hard as advocates to get E what he needs.

We have a busy week again. Tuesday is E's MRI & appt w/ the neurosurgeon to follow-up on his hydrocephalus. Wednesday we go back to Mayo for a GI follow-up. So lots of prayers the appointments both go well and E doesn't find any GI bugs in the meantime.

And no, he's not taking anything by mouth (other then a little juice from an eye dropper). We gave him a cup to try and encourage him to try it. But E thinks it's just a "bang bang" toy!

Help, my sisters need a new hobby...

2008-01-20T13:11:00.000-06:00

This is getting ridiculous!

Cute as always

2008-01-20T13:06:00.000-06:00

I swear E gets cuter by the day :)

Boy toys

2008-01-20T12:55:00.000-06:00

Sorry I didn't get these pics posted. E is doing well in his chair, if you entertain him he will sit for 15-20 minutes. We go tomorrow for another fitting for his AFO's and have another seating/wheelchair eval at the end of the month.

Now that's talent

2008-01-13T11:42:00.000-06:00

E shows off his new sock trick
If you think that's something, you should see him do it in his new big boy car seat. Our little boy is determined to be w/o a hat and socks this winter!

Merry Christmas!

2007-12-25T00:47:00.000-06:00

A few more pics and a video

2007-12-20T23:21:00.001-06:00

Check out E laughingMommy you know better....

E HATES

Hats!!!

Just can't get enough of our little guy?

2007-12-20T22:31:00.001-06:00

Who wears short- shorts?

Not E, Mommy says it's too cold!

E kicking back

Gosh I'm cute

Today's fluffy mail....Mommy has been busy!

Such a cute woolly set
Hat is going...
Going...
Gone!
Haha, aren't I cute?

Overload of cuteness

2007-12-20T22:14:00.000-06:00

E's loving his new footies

Come on, give E the camera

How 'bout if I'm really, really cute

Hmm, tastes like chicken

Eli's special Ed teacher...He's not too thrilled about the whole ordeal.

Little stud muffin

Bad hair day

That smile is contagious

Giving thanks....

2007-11-22T21:01:00.000-06:00

For family

E games

2007-11-21T01:52:00.001-06:00

We're heading down to Mayo on Friday for a follow-up. Please send some ppt that everything goes well :)

Eli with his sound switch. Right now it says "Where's Mommy?" I'm not sure he gets the concept of pushing the switch when he wants me. E found the fart noise Shawn recorded just as amusing.

And another favorite new game....

Here Mama, want your cell phone back?

Haha, too bad E's got it!

Why does the baby have to exercise?

2007-11-06T01:38:00.000-06:00

E just doesn't get why he can't just lay on his back and watch tv all day. Most big people get to do it, lol!
Another perfect pic from this afternoons therapy. He's really not thrilled w/ the new wedge his PT brought out. He only smiled b/c Mommy made a fart noise. LOL, simple pleasures.

And check out his new stud necklace. I think he looks like a little surfer. It's an amber teething necklace made by a Mama on my diaper board.

So what's E up to?

2007-11-02T02:20:00.000-06:00

11 lbs 11 oz and 24 inches

LOL, figured I'd get the most asked question out of the way first. I know, bad blogging Mama.
Eli is doing good, well except he's sick again. Darn winter and RSV season, it always seems there are way more days that he's sick then not. It is a little easier this winter and being sick as Eli found his new love, the big flatscreen in Mommy's room. I know, I normally wouldn't endorse a 17-month old watching tv for any extended time. But, thinking of the world from Eli's perspective. He's not mobile, he can't even lift his own head to see toys. He is so hypotonic in his neck & trunk that it makes sitting in his special chair unassisted impossible. He's always working against gravity to play with toys on his back, and being just 11 lbs most toys are made for children much larger & stronger. He has very low vision and cataracts, so he can't see what is going on around him. But Eli sleeps on our bed and you turn that big television on and his head flips right over. So I say, for gosh sake, let the boy watch tv!

LOL, sorry felt the need to give my soap-box speech. It is cute now that he is getting his favorite movies. He laughs at the same part in Toy Story, which is funny b/c it's not even during a joke or intentional funny part. E thinks it's hilarious when the weeiner dog drags the toys downstairs. I think he laughs at the dog barking. Either way, it's adorable :)
Hmm, on other updates besides Eli's sick again and he loves tv.... We are keeping very busy with his therapy. We have therapy 3-4 times a week. Eli always poops out after about 15-20 min, but some week we'll be able to work up to that hour. His PT does bring out his favorite toy, Mr. Sparkle (toy he has in the pic with his chair). It's the first toy that E can actually activate himself. He looks so surprised every time it vibrates for him, but then he goes right back to it after about 5-sec. I will have to catch video of it b/c his expressions are just priceless.

And for added enjoyment, E has figured out how to chew on his feeding tube. It's this great toy that's always attached to your tummy. You just pull the long strong until you get the chewy part up to your mouth. Keep pulling until you get the red part off (this will spill all the warm slimey stuff from your tummy all over you & your hair. More bathtime then, yay!) and then chomp away. All in good fun until you get a hole in the tube from one of your three teeth. Then you let formula drain into your mouth, cough repeatably and start aspirating. Mommy says it's not such a good game for E.

And all this new blogging brings up to 4 am, so I will have to do the Halloween pics in the morning. Besides...Eli is exhausted, lol!

Work, work, work

2007-10-15T17:32:00.001-06:00

E's doing so great in his chair. He went almost 5-minutes today holding his own head up!
And some more pics just b/c he's so darn cute :)

Now the mother of a SIX year old!

2007-10-12T15:48:00.000-06:00

Wow, were does the time go. It seems like just the other Kaitlyn was my itty-bitty skinny baby. She totally was into her birthday this year, which was really fun.

It's hard to be the little sister

Kaitlyn's own digi cam

Such a beautiful little girlAnd such a goofy little sister
Aww, love ya Genny-beef!

A special chair

2007-10-12T15:35:00.000-06:00

Getting in my new chair

Party animal

Doesn't E look great in his new seat? This is the 5th chair we've got from PT and finally they were able to special order on in to fit E. I think it came from Germany, I guess they do a lot more w/ really little ones and special equipment.

Anyways, E does fabulous sitting up! He can even hold his head for ~10 min w/o the extra head & neck supports. E's getting to be such a big boy!

I'm doing it!
Mama, please! No more pictures

My...umm...unique kids. LOL!

More then a last name and DOB

2007-08-30T01:22:00.000-06:00

I was going to update w/ all E's recent medical mumbo jumbo, but I just can't do it right now. So you get a bit of a much-needed vent....
I'm so tired of going in to see various specialists, making phone calls, appointments, filling out paperwork, and the list goes on where I only refer to E as "DeMers, 5/18/06"
Because he's so much more then that. I have to check every organ system on the abnormal/complications list, and rarely do we ever get to check even one of the developmental milestone boxes. Tonight I just want to share some things about E that often get missed, b/c there isn't any boxes for this....

E loves his bubbie (pacifier)

E loves tv. No judgements please, he watches 10 hrs+ per day. Because it makes him happy. E's favorite movie is Toy Story or Cars. He waves his hands around in the opening scene when Buzz Lightyear flies accross the screen.

E loves tags. Not taggie blankets, but tags on shirts, toys, etc. He will play with a tag for 20-min just feeling it up and pulling on it.

E loves anything that crinkles. Chip bags, mylar balloons, paper receipts, candy wrappers, etc. He hears a crinkle and his little hands start waving, give to E!!!

E loves the Doodlebops. He will settle down from a full-fledged screaming fit in the car when you put the Doodlebops on the i-pod. His favorite song is the Get on the Bus song. He thinks it's very funny when Mommy beeps his nose to the song.

E loves the sound of vibrating and lips smacking.

E loves his crinkle bug and his keys b/c he can shake them by himself.

E loves his minkee diapers. He feels them up every chance he gets. He also likes when Mommy puts him in a prefold diaper b/c the snappis are fun to pull off and then he's nekkid and loving it!

And of course, E loves his Mommy :)

More cuteness

2007-08-28T11:07:00.001-06:00

Girl's first troophies

Soccer divas

Time for more pics :)

2007-08-28T11:01:00.000-06:00

I know, I know, I still haven't updated the blog. We've bee super busy w/ various specialist appointments. The girls both start school next week, so hopefully I will have maybe a few minutes to catch up on things.

Wow, do we need an update!

2007-08-02T12:54:00.000-06:00

It's been almost a month since I updated the blog! E's not having much for Mommy computer time right now, so here's some pics and I promise to actually write something soon.
Click for video- Sir Stinky

Holy Cow!

2007-07-05T14:50:00.001-06:00

Is that the same baby??

It has been such a blessing to witness all the answered prayers. Eli has finally started to gain weight and look, well, healthy! When we went down to the Mayo E was 4053 grams, 10 days later he is chubbed up to 4330 grams (almost 30 g/day weight gain!) The total he has gained in these 10 day is the same amount he gained all from September to April of last year.
Eli is just the happiest little guy you will ever know. There isn't a single person he will not flash one of his precious goofy grins for. You have to check out his laugh and E playing
The doctors decided Eli is now well enough for surgery. What a reward, LOL. E will be having his PEG feeding tube replaced w/ a Mic-Key button on July 16th. He has to go into the OR under general anesthesia, but we should be able to go home the same day. E really needs a new feeding tube. Normally they replace the PEG tube after 2-4 weeks when it heals, but E has never been stable enough to where they would want to do an elective surgery. Oh, his PEG is really icky now too. It's all black on the inside, which is really not what we want to have w/ a baby w/ a weakened immune system. Eli is already on maintenance antibiotics just to keep his GI tract stable, so we don't want a whole mold garden in his only route of entry for food. We are not expecting any bumps, but if you could please keep Eli in your prayers that day. Here's some more pictures to share of his cuteness :D

And then there was more E....

2007-07-04T15:03:00.000-06:00

And his goofy sisters too :)

No miracles at the Mayo...

2007-06-25T20:51:00.000-06:00

I wasn't expecting that much before we drove down to Rochestor, although a slight part of myself really was praying for a miracle. We spent our entire day at Mayo- 6 am to 5 pm, being shuttled between appointments and different procedures. A recap of our day-
1. Met w/ a GI doc who specalizes in short bowel syndrome
2. Lab draw, which took two pokes and a very unhappy baby
3. CF sweat test, more unhappy baby
4. Really bad stool culture attempt. This included placing Eli IN a plastic stool collection container. Picture a roasting chicken (naked E) placed literally in a plastic cool-whip container for 1.5 hrs just waiting to get sprayed w/ rancid watery stool.
5. X-ray studies, lots of lovely barium and holding a screaming baby under an x-ray machine. Concluded w/ E spraying white barium out of his bum and all down Mommy.
6. Final review of the studies w/ the GI doc
Add in lots of waiting time, cranky baby, diaper changes, cranky baby, nasty hospital food, more tired cranky baby....

What I learned- good things
E does not have CF
His thyroid is normal
He has a normal appearing jeujunum and colon

What else we learned- most I already knew, but still very upsetting to get a real diagnosis
E is taking in 200 cal/kg
He's absorbing very, very little- his stool cultures were a +3, meaning he's not absorbing fats, pro or CHO
His prealbumin was 2.8, very low meaning he's malnourished
His fat soluble vitamins were all low, indicating significant malabsorption
His gut-transit time is 20-minutes TOTAL
His bowel is dilated and he has significant bacterial overgrowth right now

What does this mean? There aren't a lot of hopeful options for significantly better treatment for E. We are trying the addition of benefiber to his formula, adding a prohpalactic antibiotic, PERT enzymes & ursidol (3 more new meds) and increasing his Immodium. Eli could you all the prayers you can send that any one of these things will help improve his absorption and nutritional status.
There are two more last-resort options, but I strongly believe they will not improve Eli's quality of life. Thank you for everyone who has continued to pray for E. I know the Lord has a plan, we just have to pray, have faith and be patient.

2007-06-24T21:12:00.000-06:00

Check out those big numbers!

June 20thGenny helps E look "pretty"

E's swirl

Cute fluff, even cuter kiddo

Enjoying our new home

2007-06-13T18:32:00.000-06:00

Check out all the fun we are having! Mommy will update when she has some time, right now there are still lots and lots of boxes :)

A year of prayers

2007-05-17T22:39:00.000-06:00

A Gift from God

At first glance
you were so small
I hardly saw a baby at all,
with tubes and wires
a frightening sight
but you were in for a
big fight.
Not even two pounds
just skin and bones,
your body so small
with problems so big,
but you fought hard
and continued show your strength.

So many fears
So many tears.

You are home now
and learning each day
I love you dear,
more than words can ever say.

A miracle baby
A gift sent from God.
You showed the world
You showed us all.

Happy Birthday precious baby Eli

2007-05-17T22:26:00.000-06:00

Sorry I haven't updated the blog in a while. It's been very crazy w/ our house closing and all E's recent appointments. Eli is sick again, he was in the ER on Tuesday getting IV fluids for 12-hrs. He's still not feeling well, so I'm posting pictures from earlier this week.
I can't believe my baby boy is a year old today. Birthdays for preemies are always tough. The happiest day of my life is linked to the scariest day of my life, and will always be remembered that way. Still, I wouldn't change Eli for the world. I thank the Lord every day for blessing me with the three most amazing children.

Elijah Joseph, you are one amazing little boy. Mommy loves you so very much!

My busy bee (E videos)

2007-05-09T21:23:00.000-06:00

Showing off his fine motor skills- Glasses
Bubbie
Could he possibly get any cuter?- Happy

Eli's March of Dimes

2007-04-29T18:54:00.000-06:00

Thank you to everyone who donated to MOD in Eli's honor. We were able to make our donation goal! I was so blessed to be able to walk with all three of my preemie miracles. We had a great walk- couldn't have asked for better weather, it was 80 degrees, sunny w/ a lovely breeze. Eli slept through the entire walk. He hated the sun, breeze, his sunhat, and the noise.

All dressed and looking cute. I bought this outfit right after our 18 wk u/s when we knew we were having a little boy. I was so bummed when Eli was in the hospital the entire summer last year. I thought for sure he would outgrow the romper and sunhat. Well, my itty bitty guy got to debut his darling romper for his March of Dimes.

What is going on here Mommy?

Crabby buns

Just a little tired- we did make it the entire walk (3.5 miles)

Our teeny tiny professor

2007-04-29T18:22:00.000-06:00

Isn't he just the cutest thing?

And he knows it!
Smiling w/ bubbie

Biting Mommy

All Eli, all the time

2007-04-29T17:41:00.000-06:00

Sorry I've been slacking off on the blog this month. Eli and I have been pretty busy with appointments, therapies and our new house drama. We close on our first house May 14th! Hopefully all will settle down once we move and we can sink back into a less stressful routine.

There's two little razors in there! Eli's bottom two teeth popped in the 2nd week in April.

Looking chubby

Love those angelic eyes

Wait! Eli wants to drive

Please pick me up?

Can E get any happier?

Check out that new head of hair- it's looking red :D
(ok, maybe strawberry blonde)

E is definitely a little heart-throb

Who spooked the baby?

Another humongous smile

Dancing princesses

2007-04-29T17:35:00.000-06:00

Picture day at dance! They both look so grownup :( It took a little convincing to get Kaitlyn to wear her costume (Gen would prob wear hers to sleep if she could), but once we got to the studio both girls perked up when they saw their friends all dressed up in the same costume. Their recital is the 2nd Sunday in June, hopefully I can post more video of my two dancing divas.

Eli's fancy panties

2007-04-29T17:27:00.000-06:00

Finally, a diaper that's as cute as Eli is :D I can't rave enough about how wonderful cloth diapers are! They don't leak, E's bottom is finally starting to heal, his pressure sores don't rub against a rough diaper and best of all there are no more screeching diaper changes. No more icky disposables, it's only the best for my little guy's bummy :)

My Three Easter Bunnies

2007-04-11T10:15:00.000-06:00

Happy Boy

Two pretty pink princesses

Eli all decked out in his Easter dudsMy girlies Easter dresses

Mommy does her cartwheels

2007-03-28T11:35:00.000-06:00

Ok, E's Mommy is not that coordinated. But if I was, I would so be doing some cartwheels right now. I thought I would let Eli tell everyone his big news (click for video)....

Ok, who has something to share?

Oh, oh, pick Eli!

Check it out guys!
(Adjusted for the non-metric people)
Hooray for Eli!!!!

Catching up on the photos

2007-03-28T10:47:00.000-06:00

Don't mess with E

He's a little stinker

Big beautiful eyes

And a big sweet smile

Going for our first walk

E's new toy- Mr. Bo Jangles

Playing with Mr. Jangles

Whoopee!!!

2007-03-14T10:22:00.000-06:00

LOL, I just had to take some nakie pictures of my little guy this morning (they're in the post above). So, what's better then a chubby baby? ....when that baby is Eli!!! Enjoy the pictures and videos, and please keep Eli in your prayers!

Eli talking
Eating a fist

E's way overdue update

2007-03-14T09:17:00.000-06:00

Eli is moving forward again! I haven't updated the blog b/c sometimes it's hard to post when everything seems to be going backwards. Now E has a good update, so I can start our re-cap from two weeks ago.
The downhill slide-
Eli has been battling a nasty virus since 2/19. It started with 2-weeks of GI symptoms, which for Eli meant major stooling out episodes. I adjusted his formula rate and concentration in attempt to avoid another ER trip for dehydration. Eli was able to maintain his fluid balance at 20 cal/oz Elecare running at 24 ml/hr, but his weight gain once again came to a halt. He bounced around 3300 grams for 3 1/2 weeks w/o any significant gains.
Return of the preemie lungs-
The week of March 5th Eli's evil virus turned respiratory. Our poor little guy was coughing all the time and working so hard to breathe. His respiratory rate was above 70 breathes per minute, and when we took him into the ER 3/6 his oxygen stats were hovering around the low 80's. An x-ray in the ER showed Eli had pneumonia, so we spent most of the day doing nebs every 20-minutes in the ER and watching his O2 stats jump from high 70's (before neb) to low 90's. We were released late in the afternoon w/ three new prescriptions to add to E's 9 daily meds: prednisone (steroid), strong antibiotic, and albuterol nebulizer treatments every 4-hours.
Eli's breathing improved over his 3-day steroid treatments. We went to E's ped appt Friday 3/9 and he was just wheezing (actually this was a good sign b/c it meant he was getting air into his lungs). Eli had his 9-month well-baby check Friday, even though he was sick, we didn't want to subject him to more sick kids @ the clinic for another appt. E weighed in at a whooping 7 lbs 5 oz, 21.5 inches long and 15.75 in head circumference. He officially "fell off" the growth chart at this visit. The ped went to plot his weight and had to draw the graph lines down into the box where you are supposed to write the measurements (I don't know if this makes sense, but Eli is 4+ lbs away from making the 3rd percentile for his weight for his adjusted age of 6 months).
We didn't talk much about his growth or development, as his ped now classified Eli as hospice care. I really hate this term, but she explained it b/c E is at a point where there is not much more they can do with his treatment, except wait for him to grow so his tolerance to therapies increases. I know E has hit the end of the road with his enteral feedings, but it still hurts when docs point it out.
His ped did discuss E's lungs and wants him to be on Pulmocort twice a day. It's a preventive neb treatment that hopefully should decrease the severity of his lung issues when he gets sick. We really don't want Eli to be on steroids if at all possible. They cause a lot of problems with mineral absorption, and E really doesn't need any more malabsoprtion issues. So, our grand total of daily meds is now up to 11 (all are between 2-6 times/day).
We also discussed Eli's evil pressure sore. I noticed a sore on Eli's backside on 2/16, but after talking to the ostomy nurse on the phone, they told me to treat it like a diaper rash. We have an extensive buttocks care plan, so we went back to our 6-step diaper changing process for 2-weeks. Well, the sore didn't heal. It is about the size of a dime, about 1/4 inch deep and right on Eli's coccyx.
We brought Eli into the hospital to be evaluated at the wound clinic on 2/27. They took one look at his bottom and said "poor little guy has a huge pressure sore". I was so upset, here I had been treating it like a rash and Eli continued to sit right on the sore for 10 days. We got a new plan of care for his backside, with attempt to keep the sore clean & protected (a near impossible task for a boy that has completely liquid stools 15-20 times a day). The nurse wanted Eli to stay off his backside at all times. Ha! Tell this to the boy that only lays on his back or sleeps in his swing (on his back). Well, we've been trying two different egg-crate mattresses and trying to encourage E to lay on his side. As of Friday (3/9) the sore hadn't gotten any better, but it wasn't any worse either.
Eli's ped wrote a referral to Gillette Children's for E to be evaluated for adaptive medical equipment. This was another hard thing for me to swallow. I know that E is behind, but it's hard to come to terms that your child needs more special medical equipment. We don't have an appointment yet, but hopefully will be in sometime early next month.
I think that's all the updates from the past 3-weeks. Now I can finally get to the good side....
The uphill climb-
Eli started to slow his stooling from 20/day down to 10-12/day over the weekend. I watched his output (we weigh every diaper) and started to work back up the calories in his formula. As of Tuesday, I got Eli to his highest formula tolerance, 30 ml/hr of 26 calorie Elecare. He is receiving 4.5 times the amount of calories he should need for his weight, so please pray this means E can gain some weight!
The best news of the week- Eli had great weight gain for 2-days now on his super-thick Elecare milkshake. He gained 78 grams Tuesday and 66 grams today. Eli's all-time highest weight today (3516 grams).....
7 lbs 12 oz
I swear our little guy got word that he was going to see his ol' pal the GI doc this afternoon. We made the appointment the first week in March when E was still doing so poorly on his feedings, and now he is a new boy. I'm so glad that I'm taking Eli in this week when he looks great, so I'm not anticipating any bad news at our appt.
The two things we were going to discuss is additional antimotiltiy agents (yeah, more drugs) to help w/ Eli's water absorption and more labwork. Eli has a lot of malabsorption (which we already know by his high calorie needs), so there was some discussion into doing a fecal study to determine more accurately exactly what he is absorbing. I'll try an update this evening if we have any major changes.
And now for the sweet stuff-

Busy bees

2007-03-07T11:15:00.000-06:00

Hi- it's me, Eli!

Sorry I haven't had a chance to update the blog. It's been a very hectic 2-weeks. I thought I'd post some pictures of his cuteness, I'll try and post an update this evening.

Just chillin'

Eli in action

2007-03-01T23:31:00.000-06:00

Apples and Bananas
Playtime with Mister E
(click to play video)

Eli's Security

2007-02-23T11:32:00.000-06:00

Welcome to Eli's Blog,
So you'd like to enter?

Permission granted :)
Caution! You will see some very cute kids here....

Big sister Genny

Big sister KaitlynAnd adorable me of course!
Now get this goofy tie off me.

Shutting down the public

2007-02-23T10:51:00.000-06:00

Eli's twuck

Such a happy guy

After a couple of weeks of contemplating, I have decided to change our blog to be private. I love being able to share Eli's progress with everyone, but it does bother me that anyone can just click and read sensitive information about our family. I sent email invites to anyone on my address book, PLEASE email me if you know of others that would like access to Eli's blog. I don't want to completely restrict access to our famous little Eli, just try and weed out the weirdos.
And now for the update on the great Mister E....
I am starting to become very optimistic about the 26 cal formula. Eli is.....shhh don't tell him.....growing! So far we've had three good weeks of weight gain, ~7-10 grams per day. Eli and I shared a flu bug Sunday-Tuesday that was pretty nasty. I was very proactive in Eli's hydration this time and switched him over to 100% Pedialyte when I noticed he was starting to stool out. Actually stopping his formula really made the difference. Eli went from stooling 5-8 times an hour to going once ~2 hours. I kept him on Pedialyte for 24 hours, tried him back on formula, he stated to stool out again, so we did another day of clear fluids. We are now past 24-hours of returning to his Elecare formula and he seems to be doing better. Eli is still stooling quite a bit, but I weigh his ins & outs and can make adjustments to his fluid intake before he starts down the evil road of dehydration. I am just so thankful we haven't made a trip into the ER this week. Every little bug Eli gets always sends him in such a downhill spiral that it's impossible for our little guy to keep up. It seems like my obsessiveness w/ his poop has helped prevent the start of a nasty dehydration spell....at least for now.
I suppose I should post the good news....
7 lbs 10.9 oz
Yes, Eli was 3484 grams on Thursday. The weight is a little misleading b/c he was on Pedialyte for 3-days. It causes his cells to swell & retain fluid, so his weight was obviously a "wet" weight. But, I decided to post it anyways and celebrate his chubbiness. Eli lost an ounce this morning and will probably continue to loose weight as he pees out all his extra fluids. I just pray Eli is able to turn his weight around again and we have seen the end to his nasty flu.
9-month stats (6-month adjusted age)....
We don't have an appointment for Eli's official 9-month appointment until March 1st, but I have his unofficial stats to share.
7 lbs 9 oz
21.25 inches
15.75 inch head circumference
Eli is growing like a baby weed :) Ok, maybe not like a weed, but he's growing and that's the most important past.
There isn't a whole lot more to update. We have an appointment this afternoon for Eli's sore bum. He has a pretty large lesion right at his buttocks crease (he's really going to hate me for posting this when he's older ) that just won't heal. It's been there for over 7 days now, and unfortunately Eli's so malnourished right now, his skin just doesn't want to heal together. I'm praying we'll be able to just walk out with another buttocks concoction and we don't spiral down into a more serious infection. Eli really doesn't need another complication.

Well, little E just woke up and realized there is poo on his "owie" spot again. I hope to upload his recent videos over the weekend, so be sure to check back on our little guy!

Wanna try my bubbie?

It's Greeeeaaattt

Eli's March of Dimes

2007-02-13T22:19:00.000-06:00

Mr. Grumps

I have never asked for money for Eli, and I'm not posting this in request for donations either. I just wanted everyone to know we are planning on walking this spring if anyone wishes to join Eli's team. My family has a lot to be thankful to the March of Dimes for. Eli's Power Squad
For those not in the Twin Cities area, you can still help! If you register on Eli's team site, you will create a personal member name & page under our team site. You can then edit/change your personal walksite location on your member page. There are lots of MOD walksite locations around the country and you can easily search by entering your zip code. Please consider walking in honor of our little Elijah.
Of course, I have to add the most recent pictures of our little man. He's loosing his "puff" and Mommy is so sad :(
Eli has a look only his cuteness can pull off- a couple of stray long wispy strands on his preemie shaped head, yet he's still 110% adorable.

My sweet boy

Mr. Happy

The forgotten ones

2007-02-13T14:39:00.000-06:00

Kaitlyn's Valentine card from Uncie Nic

Ok, I don't purposely post only about Eli, but he's just a much more complicated kiddo right now. I probably should post an about about my other two angels b/c they've got some pretty big things coming
Kaitlyn-
I can't believe I am soon to be the mother of a kindergartner. We go to kindergarten round-up tonight to see the school and meet the teachers. I just learned yesterday that our district does all day, every day kindergarten. So, starting in September, my oldest baby will leave on the bus at 8:30 AM and not come home until 3:30 pm. It seems like such a long day for a little girl. She is, of course, very excited. I told her about riding a bus and she knew that she would "have to hurry, so she won't miss her school bus". I think Kaitlyn was most excited about going to school without her sister and she said then she wouldn't have to share her friends.
It's just so sad to think of my girls being at a different school. I just can't financially swing sending Kaitlyn to a private school though. I wish I could, but I'm sure she'll be just fine at her new elementary. It's just Mommy that needs time to adjust to the idea.
Genny-
I still can't believe that my tiny 1 lb 8 oz micropreemie is coming up on 4 years. Genny has just come leaps and bounds in the past year. She is still a tiny little thing, but always our "tiny & mighty" Genny. Genny is doing a lot better with her eating. We just got the ok to come to feeding clinic every other week for the next quarter. She is eating a ton of foods and most nights she eats more then her sister. Gen never fails to surprise me with her eating. Last night she gobbled up my stir-fry that was loaded with peppers and onions. She wanted "more little chickens w/ weeds"...I think she meant more stir-fry beef and peppers :)
Gen is still our munchkin, but she is growing. At feeding clinic last week she was just shy of 25 lbs. She's gained 3 lbs in 4 months, a huge growth spurt for our Genny-bug. She is starting to fit into 2T size clothes, but we still have to hike up her pants with a belt. Her favorite item lately is her stretchy pants. It just cracks me up when Shawn dresses her in jeans and 5-min later she's undressed and put on a pair of her stretchies.
I got a good phone call from Gen's EI teachers yesterday regarding her review for her 4-yr bday. Her teachers don't think she needs any more of their services! Gen has come so far in the 2 years she's been in Early Intervention. At her 2 yr birthday she wasn't talking, refused to walk and always did things with only one hand. Now they are talking about graduating her!
Since Gen did qualify for EI at 2 yrs, she isn't "due" to be re-tested until she is 5 years. I think I will probably keep her in the program b/c she really needs the social interaction of preschool. Genny is still very ADD/ADHD, has a lot of social immaturities, and is still pretty behind in gross motor due to her tiny size. But besides making her physically & emotionally develop faster (I am still in experimentation w/ my magic growth beans, but they haven't worked on her brother yet), there aren't a lot of services that EI can provide to assist her. It is really nice to see the progress she has made and I know pushing Gen is the best thing to do. She is just one of those kids who will do as little as you expect of her, but if you push her to do age appropriate activities, she can do them. We may have to be more creative in coming up with new goals for her IEP (individual eduction plan), but it is just wonderful to know that when she gets to kindergarten she will be ready to go into a regular classroom.

I still can't believe how fast my kids are growing up. It's nice when the girls are at school and I am able to concentrate on Eli's cares, but it does made me sad when I realize how fast they are growing & developing without me being there. Sometimes I just wish they could stay little for a while longer, but most days I pray for all my kiddos to keep growing.

My little choc-o-holic

Stuffing her cheeksLooks like a mouse was here

Just call me Mr. Chubs

2007-02-13T13:54:00.000-06:00

I have to start with the best news first- drum roll please......

7 lbs 7.4 oz

Yes, Eli finally bypassed the 7 lbs 5 oz mark. He weighed in at a whopping 3396 grams this morning and is 21 inches in length. Not bad for almost 9 months old :)
GI Issues-
Eli switched to 26 calorie (actually its 26 2/3 calories per oz b/c you can't mix straight 26 cal formula) on Friday. He just couldn't gain any weight on 24 cal formula, so his dietitian agreed to just go out on a limb and try bumping him up to 26 cal. Well, so far it's been 3 days and he hasn't started stooling out. I haven't noticed a difference between his stooling issues or new problems w/ his obstructions on 26 cal vs. 24 cal, so he's getting more calories in and not showing major signs of problems yet. The best part, he's gaining weight again! Eli was 3308 (Fri), 3304 (Sat), 3310 (Sun), 3352 (Mon) and 3396 today. Eli did manage to poo on the scale, but his homecare nurse said we could still count it. So, his weight minus the big poo was 3356, but we like the bigger number better :)
Vision-
Eli had his follow-up at the pediatric opthamologists last Friday. We don't have much more to update from last time. We are still waiting until Eli can get to a point where they will consider removing his cataracts. Right now he is way to fragile for any elective surgeries. Plus, they will remove the lens of his eye, and no one wants to try and put a contact lens in a 7 lb baby. We talked a little about a prosthetic lens, but it's still an experimental procedure in kids under 5 years. Right now Eli's opthamologist just wants to continue watching him closely until he gets to a point where we can more seriously consider surgery. We have another appointment in 6-weeks.
Growth/Development-
I decided yesterday that I was tired of washing his newborn clothes, they were getting really worn out since he's worn them so heavily for the past 5 months. I decided to "graduate" Eli into 0-3 month clothes. If the recent pictures look like he's "shrunk", it's just b/c he's in bigger sleepers. I went ahead and listed all his preemie clothes on Ebay. I was pretty teary eyed taking picture of all his tiny things. It's hard to see growth when we still weigh Eli in single grams each day, but when I look back at his tiny NICU things, he's come a long ways.
We went out last weekend and bought Eli his "jungle gym". I got a few recommendations from my message boards and decided on the Fisher Price Rainforrest Activity Mat. With just the addition of some extra rings to accommodate his "vertical challenges", Eli just loves his jungle. He will actually lay under it for 2-minutes without screaming and stare at the toys. He hasn't made any moves to try and grab anything yet, but if you put a ring in his hand, he will hold on. Eli still thinks his jungle is much better when Mommy lays right next to him & talks, but we're working on his play skills.
Eli is still working with his OT once a week. We have an hour appointment, but really only do about 20-minutes of range of motion before Eli decides he's done. We talked about moving his therapies up to more then once a week & adding services from PT and the low vision therapists, but Eli always looses weight the days he works with OT. We decided for right now, Eli's #1 goal is to grow more Eli. After he works on his growth, we'll concentrate more on his development.

Eli of the jungle

Working his computer

Big sister Kaitlyn helping out

Pictures of his cuteness

2007-02-08T15:00:00.000-06:00

Who me?

Nah, must have been my sisters

I'm the good child

What are you looking at?

Yep, I'm adorable, as always :)

Nekkid Boy

2007-02-07T00:33:00.000-06:00

I have always shared head-shots of little Eli because it's hard to acknowledge how tiny he really is. To me, I see my perfect little boy, and I don't want to "alarm" people with how little he really is. I know some day I will want to reflect back on this time, so here are pictures of Eli actually enjoying his tubby tonight. He looks so darn cute, and the look in his eyes just melts my heart. I'll update more later on the medical issues and such.

Grow, grow, grow!

2007-02-01T12:26:00.000-06:00

7 lbs 4 oz

We made it into another day with weight gain! Eli plumped up another 40 grams making him 3306 this morning. (OK, Eli will likely never be plump in his life. The adjective just sounds better iso describing how frail his little body really is) He is still below his highest weight of 3380, but we are almost there.
I started to get a little worried yesterday now that he's returned to the bloody stools. They don't seem to be bothering him any (well, no more painful then his pooping has been) and the weight gain this morning is a good sign he is still tolerating his feeds. I pray every diaper I change that I won't see the return of the devastating diarrhea.

I don't think there will ever be a day that we don't worry about Eli's weight. All I can do is rejoice each morning when he gains and pray for it to continue.

Eli is napping(by himself!) in his swing. He has OT tomorrow, so hopefully he will feel well enough to do his exercises. I haven't pushed Eli on his vision or range of motion therapies for a few weeks. Eli is such a delicate little guy and we all would rather see him grow & thrive and worry about his development issues later.

We see the pediatric opthamologist next week, so hopefully I will have more updates on Eli's eyes. I've been noticing a white pupil in his left eye in several recent pictures. I called the opthamoligists office and the appt next week is the earliest possible. Please pray the appointment goes well and we don't have any new catastrophic news.

Witnessing God's miracles every day

2007-01-31T21:40:00.000-06:00

Look how strong Eli is!

7 lbs 3 oz and sitting!

It's kind of hard work Mommy

I still have tears in my eyes from when I just took these pictures, he is such a little miracle. Eli was coughing a lot on his back, so I tried holding him upright to help with his reflux. He was throwing his head forward and getting very upset, so I just thought I would try and sit him upright before he vomited all over both of us. Well, he sat, and liked it! Normally his muscles are so tense that his back arches and his head flops back. I can't believe my little man sat up on his own! I refuse to believe the grim prognosis (as far as development) that his doctors have laid out for Eli. Eli continues to amaze everyone with his immense strength and resilience.

Eli has been better the past two days. The best news is that he actually gained weight. His weight was 3180 Monday, 3212 Tuesday and 3266 today. He is still below his weight at the beginning of the month, but I am praying this trend of weight gain continues. Eli's normal pattern is a gain for 3 days then he looses weight for 3-4 days. I am still praying for a miracle, that Eli will be able to tolerate his feedings this time and continue to gain.

The other great news is Eli's pain seems to be more manageable. We are still doing scheduled pain medications every 3 hours, but he hasn't done his high pitch & inconsolable scream all day. Eli still requires a lot of Mommy TLC and I love that I am actually able to calm him. He was even flashing me some of those precious little smiles this afternoon.

I know God is watching over my family and little Eli. It's so hard to believe that just 3-days ago it looked like our baby boy would be recovering from his 7th surgery during this time. Eli continues to be a strong little fighter.

My happy boy

Fingers are so fascinating

Getting back to normal, sort of

2007-01-29T16:43:00.000-06:00

Pouty lipThe stare that melts my heartMy little goofy goober

Playing with his new hospital hippoLove my lavender hippo

Eli is starting to settle back into life at home. He is still very irritable, which makes it pretty hard on Mommy. Eli is fine when he is sleeping in his swing (1-2 hrs max) or if I am holding him, rocking or singing to him. He screams in pain whenever I try and leave him- unless he's in a deep sleep. I feel so bad, I am only able to give him pain meds every couple of hours and I do my best to comfort him. I can tell pooping is still very painful for him. Eli screams for 1 hour+ before he is finally able to poop and then I can usually get him back to sleep for an hour. I just pray this will pass soon and Eli will be more comfortable.

Eli was 3182 grams this morning (7 lbs 0 oz). I know this is probably a more true weight then those we were getting the past 2-weeks due to his dehydration/obstruction extremes.

I talked to his GI doc's nurse this morning and she relayed the message that he wanted a central line placed in the near future. I really don't think this is best for Eli, but I am losing docs that also feel this way. I talked to Eli's dietitian and she agrees that there are more options to try with Eli's enteral feedings before we resort to TPN. It seems unfair to Eli to judge his growth over the past month when he has had so many issues (independent of his absorption issues) that set him back. We are not planning on doing Synagis this month, so I just pray Eli won't get anything that sends him into his awful diarrhea spiral.

We are still trying the 24 cal formula w/ 3% pectin. We just added 1 tbps Benefiber/ 4 oz formula to try and take advantage of Eli's intact colon and help slow things down. I know there are more options to try and plenty of prayers to be said to get Eli to grow.

Set free

2007-01-28T21:08:00.000-06:00

Eli and I made it out of the hospital at 6:30 pm. The attending ped wasn't happy about discharging us, but the hospital wasn't providing Eli any care that I couldn't do at home. We have follow-up appointments Mon w/ his ped, GI doc in 1-week and surgeon in 2-weeks.

We are praying that Eli will recover and be able to start gaining weight. Please pray he won't have to endure another bowel surgery or central line.

Our little man was happy to be home, but he screamed the entire time Mommy took a shower. Eli settled right down as soon as I was out and holding him. Eli needs lots of Mommy TLC, along with prayers.

Mommy does her happy dance

2007-01-28T11:38:00.000-06:00

I talked to the ped early this morning and she was ok w/ us going home if the GI doc said it was ok. Well, the GI doc just left the room and he said if Eli tolerates his home formula regimen then they weren't providing him any care that he can't get at home, so we'll be free to go.

I will be so glad to have my baby boy back home. We are sandwiched between 2 RSV patients and our rooms share a bathroom. The GI doc and I agreed the risks outweigh the benefits of staying in the hospital to get IV fluids. The hospital is just not a good place for our very fragile little guy.
We just switched Eli over to his home formula, 24 cal w/ 3% pectin running at his rate of 24 ml/hr. He was tolerating 20 cal @ 24/hr, but he still isn't pooping normally (for Eli). I can tell that his bm's are very painful. He hard screamed enough to burst a blood vessel along his eye, hopefully the motrin & tylenol will help prevent this from happening again. so hopefully his little gut will tolerate his "thick milkshake". The GI doc said if in 4 hours his belly isn't distended and Eli proves he can tolerate his food, he will write the discharge orders for early evening. Eli and I are hoping 5 pm :)
Eli has been
The GI doc and ped are still very concerned about Eli's failure to of weight gain for 6-months now and recent hydration issues. There was a push to place a central line so he can get IV nutrition again, but I really don't feel this is best for Elijah. Please pray Eli can get home, recover and start to grow!
I just spoke w/ the surgeon and he said Eli likes to ride on thin ice. His x-ray from this morning still showed partial obstructions, but if he is able to get stool passed they won't surgically repair them (for now). I got the sense from all of Eli's practitioners that no one wants to open up his gut again. Every time you have a bowel surgery there is increased risk for even more adhesions (scar tissue that sticks the intestines together), a greater chance they won't be able to get his intestines to function again, decreased absorptive potential of his remaining intestines, and all the other risks associated w/ normal major organ surgery. The surgeon said if Eli has another obstruction they will have to surgically remove it. The risks of surgery are less then the risk Eli will perforate his intestine again given the significant amount & degree of adhesions he has. The Lord has continued to watch over Eli, and I just pray that he will not have to face this hurdle.
I am still waiting for the wind the fueled the storm to return. Eli isn't on his anti-diarrheal medicine, but the GI doc said he doesn't doubt he will need it within 48 hrs. I just pray that we don't go from obstruction to massive diarrhea or worse. Please continue to keep Eli in your prayers. I hope to update when we get home and show off some pictures of our little trooper.

Tooting his own horn

2007-01-27T21:40:00.000-06:00

Eli has starting passing gas again. I know he will hate me later for sharing this with the world, but gas is good! His belly is a lot softer and he's back to looking like my skinny boy again (compared to my little grape).
I pestered the nurse to keep paging the surgeon when he forgot to come back this afternoon. I had to wait until 4 pm this afternoon until he could come and talk to us about the x-ray. The good news is that the x-ray looked a lot better. Not normal, but a child w/ short gut never has normal x-rays of their gut. The air pockets have decreased and his small bowel no longer appears obstructed on x-ray.
Eli decided the he wanted his NG tube out this afternoon, so he "helped" in its removal. I still had to get the official "ok" from the surgeon to not put it back in. Eli is still pretty mad at the world, but at least we can now walk around the room w/o being attached to the suctioning machine.
I also worked my negotiating skills and got the surgeon to agree to restart Eli's feeds tonight. It's hard to tell how he is doing so far, but we restarted him at 20 cal formula running at 10 ml/hr (his normal formula is 24 cal w/ 3% pectin @ 24 ml/hr). They also restarted his reflux meds and changed him over to oral pain relivers iso rectal Tylenol- Eli is very happy about that one. No poop so far, but I just heard a few toots from Eli in his swing. Please pray that things start moving through and we won't need to stop his feeds & continue bowel rest.
No word as to whether we will actually be able to go home tomorrow. My gut tells me it won't happen. I just know how hospitals work and so far I have only had one health professional (surgeon) say that is a possibility. Eli's GI doc and ped aren't available this weekend, so we have to work through partners from their practice. It is very difficult to convince other medical workers about what "normal" is for Eli. We may end up staying until Monday or later, depending on what Eli needs to accomplish before he leaves. I guess I will know more in the morning.
Eli continues to prove he is one resilient little guy. Please continue to pray for our little fighter.

No new zippers

2007-01-27T09:35:00.000-06:00

I just saw the surgeon this morning and as of right now it looks like Eli will not be having surgery. His belly is much softer and the distention way down. We are waiting for the conformation from his x-ray that his obstruction has cleared.
I haven't met with his GI doc or ped today, but the surgeon said he wanted to give Eli one more day of bowel rest. If the x-ray looks good, they will restart his feeds tomorrow morning and he can go home! I am still waiting on a few more docs & x-rays, but I am just ecstatic that Eli will probably get through this without another surgery.
Eli is not quite so chipper this morning. He is PISSED about the huge tube going down his throat and continues to gag every few minutes. The surgeon wanted to leave the NG suction on for 24-hrs, just to be cautious, as Eli did have some major distention issues yesterday. Hopefully it won't be another full day & night of Eli doing 15-minutes rest, gag, wake up & scream for 2 hours until he can get his pain meds.
I want to thank everyone who has continued to pray for Eli. The Lord truly answers our prayers and I know he is watching over our little Eli. Keep growing strong little E.

A familiar face (surgery update)

2007-01-26T21:45:00.000-06:00

The pediatric surgeon stopped by, a man I know all too well. He was the same surgeon who worked miracles on both Eli's NEC surgery and reanastomosis. So, at least I am comforted by a man who is very familiar w/ little Eli's bowels.
The surgeon explained the obstruction as basically your bowels are a set of tubing, and for Eli a very short set of tubing. Eli has a lot of scar tissue and strictures that create "cobwebs" in his bowels. So, it's not uncommon for kids who have had multiple trauma to their bowel for it to get tangled in the "web" and become obstructed. It was upsetting to know this could easily happen again and there isn't anything we can do to prevent it. The surgeon did say that after ~2 yrs the likelihood of further obstructions decreases. Still, I hate the thought of Eli having more ongoing complications, but I guess this is the deck he was dealt when he had his NEC surgery.
So, back to our plan for his current obstruction. We are waiting for 3 possible scenarios:
1) The NG relieves pressure in Eli's bowels and they unravel themselves
2) Eli goes to surgery and they are able to just untwist the intestines
3) Eli goes to surgery and they remove the portion of bowel that become obstructed
The surgeon said the likelihood of Eli not needing surgery is definitely not as good as a kid w/o any prior bowel surgeries. He is giving him until tomorrow morning before he re-evaluates him for surgery. Eli will have repeat x-rays in the morning and if they show little progress or his condition worsening he will go to surgery. We won't know the extent of the surgery until after they are done.
The one good thing, if having your baby in the hospital w/ a high possibility surgery tomorrow could have a good thing, is the recovery time after surgery is nothing like when Eli was in the NICU. The first surgery scenario (no bowel removed) recovery time was est 2-4 days and the second 5-7 days.
With Eli's short gut, he really can't loose any more bowel length. Please pray Eli's little body can heal itself and he will not need further surgery. I'll update when I know more in the morning. We still have no poop and a very cranky little Eli.

Obstruction

2007-01-26T16:04:00.000-06:00

Elijah and I are back at Children's. I took him into the ER early this morning after Eli spend an entire night of constant pain. His poor belly was bright right & modeled and he hadn't pooped in 13 hours. I know we prayed for his stooling to slow down, but I knew something was very wrong.
It is a pretty sad thing when a tiny baby screaming like he is in agonizing pain does not constitute a priority in the ER. We had to wait for 2 1/2 hours before we even got back to an exam room. I was so PO'ed, as I told the triage nurse Eli was high risk for infection and she insisted we wait in the waiting area w/ all the other sick kids.
The admittance wasn't any easier despite the fact we've now been to the same ER 3 times in the past 10 days. It took 3 tries to get an IV in Eli's scalp and they drew 8 viles this time in order to run every possible lab (nutrition, electrolytes, CBC, CRP, full liver function panel, the works). We made our grand journey down to x-ray and they took lots of pictures of Eli's swollen belly. Almost 5 hours after we first entered the ER the attending doc made her diagnosis, bowel obstruction.
I haven't actually seen Eli's GI doc yet, but I heard through the medical-telephone that his x-ray showed a complete fluid & air blockage. We got the "do not pass go" pass this time and they tucked us away in a teeny-tiny corner room. Seriously, you think you would be more accommodating to a mother w/ three young children. This room has enough space to walk-in, turn around- in the same spot, and walk out. It should be interesting when the girls get here. While I am on my rant about family accomidations, I have been now sitting in the hospital for 9 hours w/o anyone offering anything to drink or eat. I know, it's not about me.
So, we sit and wait. I hope to know more of a game plan when I actually talk to Eli's GI doc. Normal treatment for obstructions is NPO (nothing by mouth, we stopped Eli's GT feeds) and maintenance IV fluids. They will continue to monitor Eli's obstruction w/ x-rays and we just pray it will be able to repair itself w/o any intervention. Eli will probably need a NJ tube (tube from his nose to his jejunum) to help relieve the pressure in his belly. Hopefully something will work and Eli can be more comfortable. I don't know how long it will take to heal, but I have heard 24 hours to several days.
I will hold up camp at Children's until Eli can come home. I can't bear the thought of leaving my baby boy all alone. Grandma should be coming to our rescue soon w/ Eli's personal swing, so hopefully I can get our little guy to rest. I lucked out and got a laptop from the Family Resource Center, so I should be able to update the blog and keep all Eli's loved ones informed.
If everyone who reads Eli blog could please say a prayer for our little guy. He has had such a rough road and it just breaks my heart to see my baby boy in pain. Pray Eli's bowel heals and we can return home very soon.
ETA- I just got a call from Eli's GI doc. Apparently he sent a referral for the pediatric surgeons to come and talk to me. Please, please pray Eli doesn't need another bowel surgery. Eli is such a little fighter, but I just wish things didn't have to be this way for him.

Yet another two steps back

2007-01-25T15:04:00.000-06:00

Not feeling so hot

Eli was having such a great last week; gaining weight like a champ, smiling up a storm and just being an adorable, content little guy. Eli was up to 7 lbs 5 oz last Saturday and then the fever hit.
I don't think I realized how sick Eli was getting until Monday morning. Sunday he was acting lethargic, but I assumed it was because he had a busy day visiting his Uncle on Saturday. Eli fell asleep on my bed while I was making dinner on Sunday, so I just let him sleep. Well, he didn't wake-up. I went to check on him 2 hours later and he was so hot. I took his temp on the stupid Celsius thermometer and it was 40 C. I couldn't do the conversion in my head (I later learned he had a temp of 104), but I figured he was warm b/c we have the space heater kicking out 85 degrees of heat, he was in a fleece blanket sleeper and swaddled in a fleece blanket. I unwrapped him, changed his diaper, and Eli fell back asleep w/ his little legs still sticking out of his sleeper. I assumed he would wake up soon & be pissed off that he wasn't swaddled. Well, he slept on my bed for another hour and a half until I woke him again. Eli's temp had dropped to 39 C w/o his eskimo dressings, so I knew he had a true fever. I gave him some Tylenol and he fell asleep in his swing and didn't wake up once during the night.
I woke Eli as soon as I woke up Monday morning and realized he had actually slept through the night. He still felt warm and didn't really wake up even when I undressed him. I could tell just by looking at him that something was very wrong. I went to weigh Eli and found that he had dropped 10 oz overnight! Eli was back to 6 lbs 11 oz and looking very, very frail. So, I packed up my sick little guy and headed back to the dreaded ER at Children's.
When we got to the ER at 1 pm I couldn't believe how crazy things were. There wasn't a spot to sit in the waiting room, there must have been over 30+ coughing, sneezing, and puking kids waiting. I begged the triage nurse to let us back into an ER room and luckily there was a room that they normally don't use for patients, but the nurse said it would be ok to let Eli wait there.
I told the triage nurse that Eli needed IV fluids ASAP and she said someone would be in shortly. So, we waited, and waited, and waited. 3 hours later I finally got to see a nurse. They hooked Eli up to an IV (not fun on a very dehydrated baby), but this time it only took two attempts. They also drew some labs and told us to wait until the labs came back to determine a game plan.
Another hour and a 1/2 later we finally saw a doctor for the first time. Eli's labs showed that he was dehydrated again. His BUN (measure of hydration) was up to 33 (last Sun when we were in the ER for dehydration it was 25). The good news was that his CBC (WBC count- indicator of an infection) and electrolytes were normal. The ER doctor wanted to admit Eli, but I really didn't think it was in his best interest to be around a ton of sick kids if he wasn't in fact sick. The doc said that she would give Eli two more hours of IV fluid and re-check his BUN. Well, 2 1/2 hours later the lab guy comes, takes three pokes to get his labs and we sit and wait again.
By this time we had been in the ER for 8 hours, long enough for the ER doctors to change shifts. The new ER doc came back and said that his BUN had only dropped to 31 and they wanted to admit him. I asked for them to call his ped or GI doc, hoping they would let us just go home. Well, 10-min later the new ER doc came back and said we were ok to go. I didn't hesitate to take our "get out of jail free" card. We made it out of the ER relatively quickly (45-min) and the only drama was the stupid d/c nurse hastily ripping out Eli's IV taking a good chunk of hair and eyebrow with it.
Eli and I made it home by 9 pm (we left for the ER at 11 am). Eli's temp had gone away and he was very happy to be home in his swing. I thought all was well until I got a panicked phone call at 7 am Tuesday morning. The original ER doc that saw us called and said I needed to bring Eli back into the ER right away. I called the ER and spoke w/ her and she demanded to know why we just left. Uhm, hello, Eli's ped gave us the ok to go home. Apparently one of his blood cultures showed had growth overnight and she wanted to have Eli admitted. I asked if we could just go the clinic to get a script for some antibiotics and she said "I don't think you understand, you have one sick little boy." I am of course in a huge panic now, so I asked if I would just go into the hospital and bring Eli through admitting. No, the ER doc said he had to be admitted through the ER. I asked how long it would be before we got up to the floor, and the ER doc said she couldn't tell me a time but they were very busy.
Well, it was going to be a cold day in you know where before I took Eli back into the ER for 8 hours around several dozen kids w/ flu, RSV, you name the bug. So, I called his ped's office instead. I got a hold of his ped and she agreed that it wasn't in Eli's best interest to be in the hospital if he didn't need to be. By the way the ER doc made it sound was that Eli definitely needed to be in the hospital for several days for IV antibiotics, but his ped said she was ok w/ him coming into clinic for them. So, his ped said she would call the ER doc back and tell her we weren't coming and I packed up Eli to bring him to the clinic.
Eli had repeat blood cultures done at the clinic and he got a shot of antibiotics. He wasn't a happy camper about either, but at least we didn't have to spend days in the hospital. Eli had gained weight since being in the ER, so it was a good sign that he hadn't depleted all the IV fluids he had just got. His fever was down and other then being cranky from everyone bugging him, Eli looked fairly good. His ped felt he was healthy enough to go home and gave me her direct line in case something changed.
It was quite funny actually talking to his ped about the ER doc. I definitely got the sense that she did not like the ER doc at all. Eli's ped said she was very upset that we weren't taking his "medical condition" seriously. Uhm, he has short bowel, he poops, alot. We already know those things. Eli's GI doc called his ped back Tues morning and said, a BUN of 31, heck that's great for Eli! The ER doc made it sound like he was turning into a baby prune or something. Well, Eli's ped and I agreed that we would not be bringing Eli through the ER at Children's anytime soon. The best thing about going into his ped vs. the ER is we got a plan worked out for when Eli get dehydrated. His ped gave me her direct line and pager and told me to call an hour before we go to Children's. She said either her or a partner would meet us in the ER, so Eli doesn't have to be seen by any doctors that don't know him. Hopefully this should decrease all the drama of medical prof. freaking out b/c he's a little guy who just poops a lot.
Tuesday and Wednesday were really no fun w/ Eli being super cranky. I got a good call back on Wednesday afternoon and his ped said the lab draw at Children's was a contaminate and Eli was not in fact septic. His draw at Children's grew Steptococcus, but his lab draw Tues at the clinic was negative (before any antibiotics). So, someone at Children's lab messed up and didn't get a clean draw. Just makes me even more glad that I followed my gut instinct and didn't haul my fragile little guy into the hospital again.
It hasn't been much fun the past few days taking care of crabby Eli. He is in a lot of pain from whatever bug he was and he isn't shy about letting me know it. The ped gave us the ok to add Motrin every 6 hours in addition to Tylenol every 4 hrs. It helped a little, but Eli still screams in dire pain every 1-1.5 hrs. It's as if he knows I have his drugs and just won't give them to him. Hmm, wonder where he got that from (for those family members that remember me after my c/s with Eli). I am going to bring Eli in to the ped on Friday for another follow-up, and if he is still inconsolable, his ped said she would prescribe some prescription pain meds to help make Eli a little happier and more comfortable.
A very long drawn out story to describe Eli's terrible, horrible, no good, very bad week, AGAIN. I really hope that Eli is starting to turn the corner on this latest illness. His weight today was much better, 3260 grams (7 lbs 3 oz). He still hasn't truly gained any weight since the middle of December, but my poor little guy keeps getting sick :(
Please pray that Elijah can get healthy and get back to growing more baby. Also, pray his pain can be managed, Eli can maintain his fluid levels, and he can stay out of the ER/hospital.

Keeping busy

Can't a little guy ever get a break?

Making more Eli

2007-01-15T11:54:00.000-06:00

Eli has been a very different boy since he has been home. Eli slept for 5-hours in his swing, woke up to be changed, then fell back asleep for another 5-hours. He was clearly telling us he was exhausted w/ all the recent events.

I have been keeping track of Eli's in's & out's (weighing diapers) since he has come home. I know I don't need another thing to obsess over, but it has helped me not worry quite so much about his weight loss. There isn't a whole lot I can do if his out's are more then his in's, but thankfully they haven't been. I hope his stooling has slowed down b/c his diaper weights over the night weren't too bad for Eli.

The best news, is that Eli gained weight! Eli was 3238 grams this morning (7 lbs 1.8 oz). I know some of this weight is from all the fluids he got in the hospital, but still his weight increase shows he hasn't lost all the fluid in stooling.

It was such a blessing to see Eli back to his happy self this morning. I just had to share my goofy boy. The video is Eli showing off his new trick this morning (double-click to open up the YouTube site where you can see the whole screen)

Thank you for the continued prayers for our little Elijah.

Despite all his "issues"

2007-01-15T00:04:00.000-06:00

Elijah is still the sweetest baby boy one could ever know. I was looking into his eyes tonight after writing my last post and it made me think I was staring into the eyes of a heavenly angel. Eli is so precious and innocent, I know one day he will be an amazingly strong man. I had to share these pictures I took a few weeks ago.

Eli's new game, pull the bubbie out and scream "who took my bubbie!"

Eli using his pouty lip

He found it gets him whatever the baby wants

The face that will melt your heart

It just doesn't get easier

2007-01-14T19:40:00.000-06:00

Eli has continued his long road of medical complications since he came home from the hospital. The poor boy just can't get a break :( I don't want to dwell on Eli's health issues, it just depresses me. I apologize for not updating earlier, but I needed some time to mentally & emotionally sort things out for myself before I shared things with the world.

Eli's eyes

We had Eli's appointment w/ his ROP doctor on Tuesday and got some good news. Eli's eyes are finally mature and he got to the go ahead to go have his vision checked at the pediatric ophthalmologist. I really thought Eli was in the clear, as almost eye problems due to prematurity are related to immature retinas (ROP). Most preemies that have ROP develop nearsightedness (like Genny), but their vision is easily correct w/ corrective lenses. I was very shocked (to say the least) when we spend over 3-hours at the pediatric ophthalmologist on Thursday.

I knew things weren't going well when the doctor didn't talk, at all. I tried to make small talk, since we were in the exam room for such a long time, but the doc kept saying he would explain things when he was done. So, I agonized over every thought while he kept leaving for find more lenses, lights, and special equipment to examine Eli's eyes. Eli was such a champ through the whole thing. He fussed a little bit, but for the most part he found the bright lights and Mommies goofy singing amusing.

The conclusion from the exam, Eli can't see. He is extremely nearsighted, -9.0 (most "normal" babies are nearsighted to about -4.0). That diagnosis was sort of expected, and then the harder news came. Eli has cataracts in both eyes; high left being significantly worse then his right. The cataract in his right eye is covering over 50% of his field of vision. His left eye is much worse, but the ophthalmologist said he couldn't define a ridge around the cataracts. He said he is unsure of why, and spent over 90-min just looking at his left eye over and over again.

Eli will need surgery to remove the cataracts, but it's not an option at this time. The doctor said he needed to consult some other specialists before he decides on a game plan for Eli. Another issue Eli has to deal with is ambylopia (lazy eye). His brain has basically shut-off signals to his left eye b/c of the severe cataracts. Eli was unable to track any light with his left eye and only to ~45 degree angle occasionally with his right.

The ophthalmologist suspects that Eli may have a neurological impairment that is interfering with his sight. Basically his right eye should see well enough to track some light, but his brain isn't "firing" right. We have a referral to a neurologist for further diagnosis. We got sent home with patches for Eli's right eye to try and retrain his brain to use his left eye. Eli is supposed to wear the patches for 1 hour 3x day when he is awake, but due to other health issues this week, he hasn't started his vision therapy. We got back to the ophthalmologist in 3-weeks and hopefully we will get a more clear diagnosis.

Please continue to pray for Eli and his sight. It is so heartbreaking to know that something is seriously wrong, but even the specialists don't know enough to correct it. I left the ophthalmologist on Thursday fearing that my baby boy will never be able to see. In the back of my head my motherly instinct knew something was wrong w/ Eli's sight, but it is very hard when that feeling becomes reality.

Eli's gut

Eli is in another rough stage of chronic diarrhea. I posted before about problems Eli has with diarrhea and Synagis. He basically starts pooping (20-40+ times/day) and can't stop. It takes a long time for Eli to make up the lost weight and fluids, especially when on a "good" week he gains ~5-7 grams/day.

Unfortunately, Synagis is like a double-edged sword. Eli has very compromised lungs due to being on a vent & oxygen for such a long time. RSV could just be enough to take over his frail little body. So, we want to make sure he is protected the best he can be during RSV season (Sept-April). Synagis is given as a monthly injection, but whenever Eli gets synagis he gets so depleted due to the side-effect of diarrhea. For right now his pediatrician still feels the benefits of RSV protection outweigh the consequences of poor weight gain and massive fluid loss.

So, Eli got his Synagis shot last Friday (1/5) and his flu shot Monday (1/7) as scheduled (the flu shot has basically the same side-effects and same reasoning behind why Eli needs it). Then the diarrhea started, as expected, only this time things has been much, much worse. Eli lost a significant amount of weight in a very-short amount of time. The Friday before Synagis Eli weighed 3290 g (7 lbs 2 oz) and in 8-days he was down to 3007 grams (6 lbs 10 oz). Eli definitely did not have any grams to loose. The recent weight loss caused his little body to shrivel up and become very, very frail (I won't be descriptive and I certainly didn't take any pictures. It's very hard for me to look at my precious little Eli in this state, and I am the mother of some very thin babies.)

I have been in constant contact with Eli's doctors this past week trying to figure out the cause and plan of action for Eli’s diarrhea. We were in the middle of transitioning Eli onto Neocate formula the week prior to his weight loss. We kept Eli on 2/3 Elecare (old formula) and 1/3 Neocate w/ 3% pectin (new formula, which is basically the same as Elecare except the type of fat. The thought pattern was the long-chain fats in Neocate would potentially be better absorbed and provide slightly more calories- 9.0/g compared to 8.5/g).

In theory, this change shouldn't have caused such drastic weight loss. Eli stayed on the normal concoction of formula until Friday (when he lost yet another 40 grams) and the dietitian suggested going back to straight Elecare w/ 3% pectin and mixing it to 24 calorie/oz instead of 22/cal. Eli is already over the maximum volume of formula for his weight (calorie wise he is getting almost 4 times the amount of calories/weight then "normal" newborns).

Now we can just pray that Eli is able to absorb enough of the 24 cal formula, decrease his dumping (higher cal concentrations often just causes more stooling in short bowel children), rehydrate, regain the lost weight and continue at his growth pattern. Eli says that sounds like a lot for a little guy, so lots of prayers are always appreciated.

The traumatic trip back to Children's

When I last talked to Eli's dietitian and GI doc on Friday (1/13), they were both in agreement to allow Eli to stay home and hope the formula change & a decrease in his diarrhea allowed him to start to gain again. Eli had been into his pediatrician on Monday, I talked with his GI doc on Weds & Fri, I checked in w/ his dietitian every day that week and his home health care nurse from Children's was at the house on Friday. It was so stressful this week watching my little boy become depleted and knowing that there was nothing I could do for him. I was up most of the night Friday holding my fussy, lethargic little man and I made the decision that if Eli had lost weight again I would take him into the hospital.

Saturday morning came, I weighed Eli and he had lost another 40 grams (down to 3020 grams, 6 lbs 11 oz). When I undressed Eli and saw his tiny sunken body, I just knew I had to bring him to Children’s. Shawn was able to stay home with the girls, who were very upset as we had planned to do "something fun", and I drove my baby back to the hospital we knew all too well.
It was very bittersweet being back at Children’s. I knew Eli needed fluids, but it was very hard feeling like he had been "captive" there his first 3.5 months of life.

The ER visit was not fun, to say the least. We entered the ER at 1 pm, I had to beg the admitting nurse to put us in a room right away (I surveyed the lobby, with all the hacking children waiting during in RSV season, all I could think of was a breeding ground) and we waited for almost 2 hours before we actually saw a doctor. The ER doc was extremely understanding of Eli's complex medical needs. It was sort of a wake-up call when I went through and recited all of Eli's surgeries, dates, meds, times last given, doctors/specialists names & addresses, complications, etc all by heart. Eli got the diagnosis of "medically complex".

The good thing was the ER doctor actually listened to me and felt that I knew Eli best. He asked what he could do for Eli, rather then me being told the tests they want to perform on my son. Eli had the normal run of stool cultures, IV fluids, and x-rays to check for bowel obstructions & GT (feeding tube) placement. It was pretty hard watching Eli get poked and prodded. The poor little guy had to be poked 5 times before they could get a good vein for an IV and it ended up going behind his ear. Eli had a lovely blue head wrap to hold the IV and lots of cotton taped to his body. He looked so pathetic, but after just a bolus of fluid, I could tell he was starting to feel better.

We were in the ER a little over 4-hours when I decided to go ahead w/ admitting. Eli was benefiting for the IV fluids and it was such a struggle to get the IV in that I just couldn't do this again in a few days when he got dehydrated again. The plan was to balance out Eli's stooling w/ IV fluids and watch how he tolerates his GT feedings.

We got a room on the med-oncology floor, thankfully not short-stay again. I was able to get a bed and stay in the room with Eli. The night was as best as it could be in the hospital. Eli decided at ~11 pm he had it and wanted to go home to his swing. Nothing would settle him down. I ended up walking back and forth the tiny room for 5-hours until my legs ached. Eli would fall asleep for 5-minutes, long enough for me to set down with him, and then wake up in a blood-curdling scream. His heart rate would shoot up over 190 bpm, making his alarm sound, the nurse would run in & flick on the light, and then Eli would blast out a massive poop. I did manage to get almost an hour of sleep when I put Eli in his car seat. Poor little guy just wanted something familiar.

After our long night we got some better news in the morning. Eli's labs looked well, again, very surprising how he somehow manages to keep normalcy when he poops so much and looses a lot of weight. All of the stool cultures came back negative, which is good except it made it harder to pinpoint the cause of the massive watery diarrhea. Eli looked a lot better w/ the extra fluids. It is strange how a little amount of IV fluids "plumped" his back up.

We saw his GI doc's & ped's partner and got the go ahead to go home. Eli was still having the same extreme watery diarrhea, but he said there wasn't much they were doing for him in the hospital. If I felt comfortable caring for Eli at home, that is where he is safest. So, I didn't hesitate to sign Eli out of the hospital. I am very glad that Eli isn't "sick", but still very concerned about his stooling/weight issues. He is still having the same diarrhea, I just pray that he won't get to the same state he was in yesterday.

We have our scheduled appointment w/ Eli's GI doc on Tuesday and ped Friday. Eli's ped wants us to device a plan for when he gets dehydrated. It's probably not in Eli's best interest to be admitted to the hospital due to his high susceptibility to hospital infections (RSV, rotavirus, etc). His ped wants a standing order for when Eli goes into the ER for dehydration/diarrhea, they are to put him in a room ASAP, give him a bolus of fluids over 4-hrs, and let him go home (unless Mom feels he needs labs/x-rays/to be admitted, etc). It gets complicated explaining to every healthcare professional "Eli's story" and what "normal" is for Eli. It's nice that healthcare professionals are recognizing the parent’s role w/ medically complex children; I just wish it didn't have to happen with my son.

A long update to say that life stinks for little Elijah this week. I know God gave Eli to us for a reason, it's just very hard somedays to watch him go through the things he does. Eli is the bravest boy that I know and I'm so proud God gave this little miracle to me. Please keep Elijah in your prayers and I pray our next update can bring some better news.

It took 6 years....

2007-01-14T19:25:00.000-06:00

But I did it, I am an official college graduate! My diploma arrived in the mail on Thursday. It was so unreal to actually hold the magical piece of paper that I worked so hard to receive. I am the proud recipient of a bachelor of science degree in dietetics from the College of Saint Catherine. I think this qualifies me to be Eli's Mommy :)

(and Kaitlyn & Genny's Mommy too) I wasn't able to attend graduation due to being on bedrest with Eli, but if felt just as special to receive my diploma at home with my three special children .

Happy New Years Baby

2006-12-31T17:55:00.000-06:00

As the year 2006 comes to an end, we have one great miracle to thank the Lord for. Our precious little Elijah Joseph is home with his family. I am very happy to put the year behind us, as 2006 did bring us our baby boy, but there are a lot of experiences that I would like to forget. I look forward to the year to come, watching all three of my children grow and thrive.

Video of Eli trying to smile, he seems confused as to what his Mommy wants him to do. I realize that I sound like a wacko, but it if makes my baby happy, who cares!

The Five Days of Christmas

2006-12-25T20:18:00.000-06:00

We had a wonderful Christmas this year. We spread the holiday over several days, so all of our family was able to get their "kid fix" w/o Eli and the girls getting so overwhelmed. I am so thankful that the good Lord allowed us to spend Christmas with all three of our wonderful children.

Day One- Grandma Phyliss and Pa's house

The girls had a fun time at the birthday party for baby Jesus. We had a pizza party with plenty of cake, cookies, and soda in little tea cups. The favorite gifts were Kaitlyn- Ariel wedding set, Genny- spinning princess doll, and Eli- Mr. Grinch from Uncie Nic (b/c they look so much alike) and diapers (already put to good use and gone).

You would think they'd be happier with all the presents they have to open. Genny is just being the typical 3 yo, pouting b/c I made her take this picture.

Cousins Kelly and Marc

Kaitlyn with her Ariel wedding set. She loves to play bride and the sweetheart.

Genny with her dancing princess doll. She loves to spin the little doll on the furniture.

Eli the Grinch, he's so not impressed

Christmas Day Two

2006-12-25T19:44:00.000-06:00

Paul and Marie's house (Shawn's parents)

We went out for a big pancake breakfast at IHOP Friday morning. After the girls were good, full, and all covered in maple syrup, we went to Shawn's parents house to open gifts. Favorite gifts were: Kaitlyn- makeup case, Genny- Thomas the train set, Eli- red tissue paper. The funniest part of the morning was Genny opening her clothes. She ripped open the box, threw the tissue paper and clothes out, and squealed in her little Mickey mouse voice "You forgot the toy in this box".

Eli getting comfy on the couch

Genny with her train rock loader set. She added it her big train table she got from (Gumpa) Santa Christmas Day.

Kaitlyn with her big make-up case. She loved getting all dolled up (I won't comment on what she looked like after her 5 y/o beauty treatment)

Eli's still not impressed with his gifts

Genny looking for her toy after opening the clothes box

Eli- "Did my mother just put something on my head"

"Oh no, she didn't"

"Ok guys, this is just getting ridiculous. My parent's definitely need a new hobby"

Day 5, Christmas Day

2006-12-25T18:05:00.000-06:00

At our home with Grandma Becky, Gumpa, Uncie Mike

We had a nice relaxing Christmas day at home. I cooked a full Christmas dinner from recipes I found online and everything turned out wonderful. Of course I made way too much food and just threw out the final leftovers (after New Years day). Everything was very tasty, we all ate too much, but I am so looking forward to ham & bean soup. Favorite gifts were: girls- princess tea set, Kaitlyn- interactive dancing princess Genevieve doll & Nintendo DS, Genny- huge Thomas the train set w/ table & Thomas Aquadoodle mat, Eli- Pampers (already poo'ed on all of those too).
I unfortunately didn't get any pictures of the beautiful table that (Gumpa) Santa made, but I do have video of the girls first going downstairs to see their train. Genny exclaimed "Howy Sh*t, Santa brought me my train". I was too tired to yell at her on the video (this was at 5:45 am), but it was kind of funny how excited she was. Kaitlyn was pretty glum in most the pictures b/c she didn't open her Santa gift until last. She finally cracked a huge gooofy grin when she opened her Nintendo DS game.
We had a great Christmas, but we were all ready for things to be done by Monday afternoon. Our two garbage cans were heaping with boxes and wrappings, our fridge packed full of leftover food, and the kids were exhausted from all the excitement. I am awaiting next year when I can have my whole family at my home for Christmas.

Kaitlyn looking pretty before Christmas dinner

Genny awaiting dinner, she already snuck a candy cane off the tree

Lots of tea cups for the girls to serve dishwater (I guess Sponge Bob did it)

Uncie Mike with his new hat and shirt. I didn't know he was *actually* going to wear the shirt...LOL, j/k Mike, it looks good on ya.

Gumpa in his bear hat

Kaitlyn's long awaited Nintendo DS

My little hams

2006-12-20T18:02:00.000-06:00

I just had to share pictures of two of my littlest hams.

There aren't a whole lot of updates on the Eli front. We had another nice week at home w/o any extra appointments. Eli is still continuing on his slow and steady growth. He was 3200 grams this afternoon (7 lbs .8 oz), so he is hanging on to the 7# mark. The kids are anxiously awaiting their 5-days of Christmas, one of the joys of having a lot of family.

I want wish everyone a blessed Christmas and look forward to sharing pictures from our family.

A Bumbo Experience

2006-12-20T17:48:00.000-06:00

We decided to try Eli in a bumbo seat today, and well, he sure didn't think too much of his new seat. The box says it is for babies 3-14 months, but it is definitely not meant for Eli size babies. Good thing we kept the box and receipt.

Of course I couldn't bring the seat back w/o letting my "big baby" try it out. The sad thing is Genny fits in the Bumbo better then Eli. Genny insisted she liked the new seat...goofy kid.

Baby update, by Elijah

2006-12-14T14:35:00.000-06:00

Eli has some big news, so I thought I'd let him update his friends and family himself.

Hey guys, Guess what?

I'm 7 lbs!

Of pure cuteness!!!

:little baby laughs:

Ok, I can't laugh yet, but I do make the sweetest baby faces. I don't smile at Mommies face, she's still kind of fuzzy, but I love to make these big cheesy grins whenever I hear her voice. I crossed over the big 7 lb barrier yesterday. I was so big, 3184 grams (7 lbs .2 oz) this morning. I promised Mommy that I wouldn't start pooping and loose the weight I've worked so hard to put on.
I must be a good boy because Mommy didn't have to take me to any doctors this week. My friend Barb came and we exercised on Wednesday morning. They are watching my head shape because I really favor my left side. Mommy thinks it's because I can see better out of my right eye, so I like to keep that one on top. Luckily I am so light and little, so my favoritism to the left hasn't affected my head shape too much. I just have some more exercises to add to my to do list.
I don't have much more to update. My pal Barb said I did great with my exercises. I found that if I just keep smiling at the ladies they don't make me work too hard. My charm goes a long way with the ladies :)

Dance of the two Christmas princesses

2006-12-14T14:25:00.000-06:00

The girls had their Christmas dance recital and it was too much to describe with words. We captured the evening on video, so I will try and add a link later.
I don't think either of the girls had a concept of what their "recital" was going to be. Kaitlyn freaked out when she saw all of the parents, but she did get up and dance once I sat in the front row so she could watch me the whole time. Genny, well she did her "I'm too cute for this" routine. I laughed so hard at her performance to where I had tears running down my face. Both of the girls worked hard on their tap and ballet routines (ok, Kaitlyn may have practised a bit more) and did such a great job. We celebrated with a pancake dinner at IHOP afterwards.

My dancing girls

Kaitlyn strikes a pose

Genny loving her Mommy

Too cute for words, so here's some pics!

2006-12-14T14:18:00.000-06:00

Feeling up my hands

Daddy designed me another cute hat

Exploring my gums
Mom still thinks I'm a long ways from a tooth

Fighting stance

Yep, it's the return of "Eli the Elephant"

Baby Eli is so big!

My two favorite fingers to suck

Bath beauties

2006-12-14T13:37:00.000-06:00

Kaitlyn's bee-hive

Little Genny-lu-who

The moment we've all been waiting for...

2006-12-06T22:23:00.000-06:00

YES!! That's is a genuine, 100% purely sweet Elijah smile. I was tickling Eli's toes after his OT appointment this morning and he was so worn out from exercising that he just thought the toe tickles were the greatest thing in the world. Today is the first day that I can honestly say I have seen my son smile at me. It was the greatest feeling in the world. Despite all that we go through each week: appt after appt, therapy sessions, exercises, meds, many, many diaper changes, dealing w/ his finicky feeding pump, the stress of having a medically fragile child...this moment just made all those things fade into little nothings. My son knows his Mommy and he loves me...and yes, I am crying as I post this.
Eli is still pretty picky on who he gives his affection to. He only smiled the one time and since has been fussy the rest of the day. He tends to get pretty tired out on his exercise day, esp since he had dr appts on both Mon & Tues and we still have a synagis injection and nurse visit to look forward to on Fri. I know even though Eli can't see my face and see my smile, he knows that his Mommy loves him. The priceless picture I was able to take this morning will always be there to remind me of that.

Eli is sweet just the way he is, smiling from the inside :)

All of my precious first smiles

Kaitlyn (8 wks), Genny (9 wks), Eli (15 wks)

Gen & Eli are adjusted ages

Another day, another doctor (eye)

2006-12-06T22:06:00.000-06:00

Tuesday was our fun day at the eye doctors. First we got to take Genny into her opthamologist. Her eyes had gotten a little worse since her exam last year. She is still very farsighted. Little kids are normally farsighted, and they allow up to a +2 in both eyes w/o being treated. Genny is a +8 in her right eye and +6.5 in her left eye. The eye doc was a little concerned about a stigmatism in her right eye, as that eye is getting progressively worse. She gave her a stronger prescription for her glasses and we got to go back in 3-months to see if her right eye gets stronger. If not, then we will discuss doing an eye patch and/or drops to try and strengthen her right eye. We had a lot of fun picking out new glasses for Miss Genny (note the sarcasm). Genny loves her rainbow glasses, but unfortunately they don't make that style anymore. So, the new glasses were either too big, too little, or too sloppy (a new phrase Genny made up for the occasion). We just decided to pick out a pink round frame similar to her old glasses, and well, she will just have to like them. The new glasses should be here in a week, so I'll post pics on how the new glasses look and go over with Miss Gen.
We got to spend Tuesday afternoon at Elijah's ROP doctor. We still don't have the go ahead to bring Elijah to the opthamologist. The ROP doc wants to watch Eli until his ROP has completely regressed. The good news is that Eli's retinas are developing normally now, meaning the laser surgery was successful. Eli is still on the dilating eye drops twice a day and he didn't want to wean him off them just yet. We get to go back to the ROP doc in another month.
I think the ROP doc keeps forgetting how old Eli really is b/c of how little he still looks. I was discussing how I was worried that Eli still wasn't really tracking or looking at faces. When Eli does try and focus, his eyes cross a ton. It only gets worse when he tires, and then he is always cross-eyed. The doc said that eye crossing is considered normal until 6-months of age (Eli is adjusted 3.5 mths). The fact that it is more dominant in the eye that we already know is weaker, his left eye b/c it actually developed plus disease and a ridge that was lasered off, and the fact that Eli does it all of the time he said was definitely something to watch. We got to make an appointment w/ the pediatric opthamologist specialist for 2-days after we see the ROP doc next month. So, both of my itty bits will be getting some new specs in another month and we will probably have two tiny pirates in our house. Genny seemed happy at the thought of her baby brother having glasses just like her. She said, he'll need really really little glasses.

Eli's a well-baby, 6-month appt

2006-12-06T21:41:00.000-06:00

Eli's 6-mth appt with his pediatrician went well. It was pretty short and sweet since we are already working with alot of other specialists. Eli is still working his way up the growth grid. I just dread plotting him on those things b/c it creates excess worry when he doesn't follow the magical curve. Eli was 6 lbs 13 oz (he was almost 6 lbs 15 oz, little stinker lost 2 oz overnight), 20.25" in length and 15" head circumference. His head circumference is actually in the 3rd percentile (for adjusted age of 3 months 1 week) and height for weight is in the 3rd percentile as well. I think for Elijah, he is doing well.
The worst part of the appointment was the dreaded shots. Eli had to get 5 shots, plus his flu shot since he is now over 6-months old. It wasn't that terrible though, he screamed for a second and was comforted as soon as Mommy picked him up. My poor baby is so used to being poked, he still has his Synagis injection this Friday.
Afterwards the girls had their flu shots. That was not fun. Kaitlyn was so innocently sweet. She was so proud to sit up like a big girl on the table and didn't want to sit in Mommies lap. Then she got this worried look on her face when I held her arm straight...then the big shriek "OWWIE, *sniff* I DON'T LIKE SHOTS". Genny immediately started crying b/c she knew I was going to hold her down too. She got a shot in her leg and then refused to walk out of the office b/c of her big owwie. So, I got to be SuperMom again. I had Eli in his carrier on one arm, Genny in the other arm, feeding tube on my back, diaper bag on one elbow and Kaitlyn trying to hold on my fingers that were holding the baby carrier. Luckily the car was parked somewhat in the front b/c it the kids were darn heavy, very cranky and it was cold.
Eli's fun day didn't get to end there. We had to drive down to Children's hospital b/c the lab at our clinic didn't want to draw his blood. Well, poor little guy was so dehydrated and is getting so thin that his skins sags on his arms and legs. They couldn't find a decent vein to do his labs on. So, the tech decided that she was going to draw from the superficial veins on his scalp. She decided to go for a vein on his right side, and I wasn't even thinking, but Eli's neck is so tight to his left side. As soon as she got the needle starting to go in, Eli whipped his head back to the left, ripping out the needle and tape. Poor baby got a good size bruise on his head and he started shrieking. I calmed him down, but we still had to hold him down and try and draw from the other side of his head. At least his second poke was quick and efficient.
Despite all the drama and tears, I think we had a good appointment. We can rejoice that Eli's labs all came back normal. The kids got their flu shots and Eli didn't have any major reactions to his shots (other then a slight fever and being very sleepy after his eventful day). Please continue to pray that the kids can stay healthy and that the Lord will give Elijah strength to grow.

Just a little cranky

Oh Christmas Tree

2006-12-06T21:33:00.000-06:00

We put the Christmas tree up right after Thanksgiving this year, so the kids could enjoy it longer. I think we will have a fight if we try and put it away anytime before Valentines Day. Our tree is little and sweet, a perfect fit for our family. Elijah loves the lights and will actually sit for 10-min at a time just staring at the tree.

It's the most beautiful thing I've ever saw

All three of my children in one shot, a big accomplishment. I just love how Elijah is looking up at his big sister Kaitlyn. They have such a special bond. Genny still isn't too interested in her brother, but she promised a picture for a piece of bubble gum.

Happy Bday Great-Great Grandma Gen

2006-12-06T21:15:00.000-06:00

I just love the way Elijah is looking up at his Great-great Grandma.

A picture of two amazingly strong people.

We are so blessed to be able to spend Great-great Grandma Gen's 94th birthday with her. The kids had a lot of fun at the party entertaining relatives. Kaitlyn performed her dance routines and then want into a rendition of her latest drama skits. Genavieve, Great-great Grandma's namesake, did a good job charming everyone. She even talked GG-grandma out of her favorite cakes (mini-banana bread loaves). Eli did an excellent performance of his cute baby things. He slept, looked around at the lights for a bit, and did his big finish all up his back, legs and outfit. Luckily we always bring 3 outfits whenever we got out.

We tried to get a picture with all of the kids and GGG-Gen, but they didn't think it was such a fun idea.

Eli enjoying the party his way, sound asleep

Hey, who woke the baby?

Kaitlyn and her Shawn

Santa and the three little elves

2006-12-06T20:41:00.000-06:00

We were able to take all three kids to my Dad's union Christmas party this year. It was a lot of fun, esp. since I remember going to the parties when I was a kid and now I am bringing all three of my little ones there. The girls had a blast and I kept Eli safe and cozy up against my chest in his Bjorn.

Breakfast, the all healthy donut

Kaitlyn already finished hers for the picture

The girls insisted we wait in the super long line to get their face-painted. They got to listen to the Teddy Bear band while they waited patiently (LOL, ok while they fought in line). Kaitlyn got to be a snow princess and Genny was a snowflake.

The girls loving their Grandma Becky and Gumpa

Kaitlyn and her Mommy (no resemblance at all)

Of course the big man in red was there. Kaitlyn was insistent that she did not want to see Santa this year. Genny loved to tease her sister that she wanted to see Santa. So, Mommy and Eli waited in line w/ Genny for 20-minutes to go and see him. As soon as we got to the front of the line, Genny decided that she was too scared to go alone. Hence another goofy picture of Mommy with Santa (I think this is my 4th year "visiting" Santa)

Kaitlyn did her typical thing, 5-minutes after Genny got done seeing Santa, she decided she had to tell Santa what she wanted for Christmas. So back in line we went. At least this time we got a cute picture of just the girls. For those reading from the North Pole, Kaitlyn asked for a new video game and a Barbie that has a tail and wings (a mermaid?) Genny wants a twain w/ a twain table. Eli thinks he would like a clean diaper.

A week of normalcy

2006-12-01T15:29:00.000-06:00

It feels so strange to say that we had a week where absolutely nothing happened. We didn't need to rush Eli or the girls into any extra appointments. I actually had three healthy children for an entire week.
Eli's home care nurse was on vacation this week, so we didn't see any doctors, specialists or nurses all week. I did talk to his GI doc on Wednesday and gave him Eli's weights for the week. Eli is still boucing around the same two-ounces and was 6 lbs 14 oz this morning. We have to go into Children's lab next week and have more nutrition labs drawn, but got the all-clear for this week. It has been so nice to have an entire week where Eli can just stay home and be a baby and not a patient. Please pray that Eli is able to gain weight and we can continue to have more "normal" week.
Eli got to play with his OT on Thursday afternoon. He is making baby steps in his development. Eli's new thing this week is his hands. He is getting much better at getting them up to his mouth and bringing them together. The only problem is once Eli gets his hands into his mouth, he pulls out his paci. He acts surprised for a second and then starts to shriek when he realizes that he lost his paci again. I think Eli would really like to suck his thumb if it was just a little bit bigger.
Eli is also starting to want to sit up a lot more. I don't know if it is because of his reflux that he is more comfortable this way, but it is a good sign that he is getting stronger in his head and neck. Eli tends to curl over when in a sitting position due to all of his abdominal surgeries. We got some good exercises to work on from his OT and hopefully over time he will just continue to get stronger.
Next week we have appointments for Eli's 6-month well-baby appt, follow-up with his eye doctor and some lab work to get done. Please pray that everything goes well and I don't have much to update on Eli's health.
The picture below is Eli in his new bouncy chair he got from his Grandma for Christmas. He's not quite sure about the waterfall or all the buzzing on his bottom, but he does like to just sit in the chair for a few minutes and just look around.

Our lunch date

2006-12-01T14:54:00.000-06:00

Two handsome guys

Ok Mom, we've had enough!

Eli and I got to have a lunch date this afternoon with Eli's primary nurse Becca, her daughter Lauren and baby Joey. It was so fun to see everyone outside of the hospital and being able to meet Joey. I know Eli had a good time "teasing" Joey in-utero, when he was in the NICU and got to be held by Joey's Mommy. I could tell Eli remembered Becca, as he stopped sucking on his pacifier to try and listen to her voice.
It was so neat to see baby Eli next to baby Joey. They are both such handsome little guys and Joey was just full of smiles. Eli is just 2-weeks older (adjusted age) then Joey. It will be fun to see as they grow up if the size difference is very noticeable.

Tiny hands, tiny feet

2006-11-26T19:38:00.000-06:00

Elijah's precious little hand holding onto his Great-great-grandma Genevieve on Thanksgiving. GG-grandma Gen will be 94 years old next week.

The many faces of cuteness

2006-11-26T19:23:00.000-06:00

Bear faces

Eli pets his Emma kitty

Kitty is just a little strange

Crossed eyes, but so sweet

Kissy faces

Thanksgiving, Eli will take over the world

Eli loves his new bouncer

So much in just 6-months

2006-11-26T17:14:00.000-06:00

I didn't get a chance to post on Elijah's 6-month birthday, but here are comparison pictures of our little guy.

. 5/18/06 1 lb 10 oz, 12.25"
11/18/06 6 lbs 14.3 oz, 19.75"

Just a reflection on what Elijah has overcome in his 6-months of life....
RDS (respiratory distress syndrome)
PDA litigation (patent ductus arteriosus)
NEC (necrotizing enterocolitis) required removal of 2/3 of his small bowel (all of his ileum and half of his duodenum)
Illeostomy placement for 68 days and reanastomosis
ROP (retinopathy of prematurity) advanced to stage 2, zone 2 w/ plus disease that required extensive laser surgery in both eyes
Apnea of prematurity, A&B spells (apnea and bradycardia)
Numerous infections, anemia, jaundice
Numerous blood transfusions, IV's, 2 PIC lines, and a broviac line
94 days of oxygen treatment on a vent, bubble cpap, regular cpap, vapotherm and nasal canula
96 days in level 3 NICU
6 surgeries (PDA, NEC, broviac placement, reanastomosis/feeding tube placement, ROP laser, broviac removal)

Elijah has been through so much in his short life, yet he never fails to amaze me with his strength and glowing personality. Eli is truly one of God's little miracles.

Much to be thankful for

2006-11-23T10:41:00.000-06:00

(click to enlarge)

I woke up at 7:30 this morning to two little girls crawling on top of me whispering "pancakes" in my ears, a tiny poopy smelling boy sucking on my shirt, and I realized how truly blessed I am. I have all three of my precious children at home.
Elijah seemed to have hit another rough spot at the beginning of the week. Over the weekend, I kept thinking that he smelled like poop. I would change him every 30-min b/c he had this awful sour odor. I finally realized early Monday morning that it was his breath! He smelled just like he had stool in his mouth. The smell got a little better after some re-positioning, but his mouth and paci definitely had a distinct odor.
I got a hold of his GI doc first thing that morning and he said it was something to be concerned about. I had the option of admitting him to Children's under observation, but I really didn't think this would be the best route for Eli right now. Since his admittance would be elective, his GI doc said he wouldn't get to do any procedures until Monday after Thanksgiving. We decided to keep Elijah at home and watch him very closely over the next two weeks.
Bad breathe can mean a few things in babies. It can be something not that serious like reflux, or it could signal that he has a bowel obstruction. We already know that Eli has grade 4 reflux from his recent swallow/upper GI study. I really suspect that reflux is causing Eli's smelly breath. Eli acts content and isn't screaming in excruciating pain like he would be with a true obstruction. He acts very normal and doesn't show any signs of being sick. He is stooling like he usually does (6-8 times a day) and only spits up when he gets himself very worked up. Also, the bad smell is only really sour when Eli is left flat on his back. His pacifiers have it the worst, possibly he is refluxing more then I notice and he is just swallowing it b/c he has his pacifier in his mouth.
The most difficult thing is getting Eli to release his death grip on his paci. He does not like it now when Mommy changes it out for a clean one. The smells on his pacis is so strong that I haven't been able to wash it off. We just go through a lot of pacis. At least I don't worry so much about oral aversion due to Eli's paci fetish. Eli absolutley refuses to bottle, but if his reflux is this severe it is not suprising.
The GI doc wrote for an additional prescription of Zantac 2xday (he was already on Prevacid 2xday). I don't know whether carefully positioning, making sure Eli is always at a 45 degree angle, the new drug, or lots of prayers are helping but Eli does seem to be doing a lot better. I only notice a sour smell on his pacifiers, and it smells more like vomit instead of stool (sorry, TMI).
We have an appointment next week to follow-up with his GI doc. There was some discussion about doing his button-surgery in January and doing a fundo at the same time. A fundo would tie the top of his stomach so that he could not throw-up. It sounds extreme, but Eli is still on continuous feedings. If/when he gets to bolus, it will greatly increase his problems w/ reflux b/c there is a lot more volume and time for everything to come up. Plus, with Eli's growth issues and feeding intolerances, he is just a complicated little guy. If the stool breath returns, Eli will be back at Children's doing some lower GI scopes. It is possible that Eli could have a partial bowel obstruction or adhesions, where some stool can still pass but when he gets backed up, everything then comes up. I am trying to keep from worrying too much about unknown things. Eli is growing (at his own rate) and is still my happy little guy. Please keep Eli's feeding issues in your prayers.
Eli is still going at his own rate of growth. He doesn't compare nearly to the normal baby growth charts, but he is doing good for Eli. Eli gained an average of 5 grams/day this week, despite his recent reflux/GI issues. Our tiny little turkey is now 6 lbs 14.8 oz and 19.75 inches.
We came and passed on Eli's 6-month birthday and I didn't get a chance to post. It is so amazing to think we have had our little miracle in our lives for 6-months. I get up every morning and thank our Lord in prayer for each day that I have with my children. I have pictures of my little 6-month old that I will post later (I am having issues w/ my photo software).
I can definitely tell Elijah's age when he cries. He no longer has a newborn cry and can differentiate between a fussy and a full-pledged wail. We are still awaiting that first gummy smile, but Eli sure has the sharpest hearing. He starts fussing when he hears my voice anywhere in the house, and we live in a split-level! We won't know more on Elijah's vision until possibly February now, as we are awaiting release from his ROP doc. Eli's favorite thing to do is still rock with Mommy and for some reason he loves it when I sing to him (completely out of tune, I know). His eyes just light up and his eyebrows gow way up. I can tell when Elijah is happy, even though he hasn't seen the whole smiling thing.
Elijah continues to be my amazing little guy. Thank you to everyone who follows his updates and continues to pray for our little Elijah.