Averett

Alright, who's got the Kleenex? Please pass it to me when you're done.

You're being such an amazing father to your girl. It's so nice to see the dedication you've obviously put in to understand the medical terms and issues that she has faced.

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Absence is to love what wind is to fire. It extinguishes the small, it enkindles the great.

losthellhound

I have to say again, this is the most amazing story Ive ever read. I was on some of the same types of machines when I came into the world, and I'm very happy to hear that they have made such great advances since then.

You are a truly special father and she sounds like a truly special child. Im glad we've had a chance to hear your tale.

She's giving you lots of good stories to tell her first boyfriend too

__________________
"Life is possible only with illusions. And so, the question for the science of mental health must become an absolutely new and revolutionary one, yet one that reflects the essence of the human condition: On what level of illusion does one live?"
-- Ernest Becker, The Denial of Death

maleficent

Pass the Kleenex --

What an amazing journey you've been on with this child...

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wpoohbear

My dad was was born at 7 months and this was in 1947 and he is still alive and kicking as the saying goes. Medicine has come a long ways since then, just stay by her side but make sure you take care of yourself also. GOOD LUCK!

Hash_Browns

Was thinking about the little bear recently, and so I was hoping there was an update, I see it's been a while. My prayers are with your and yours and I hope all is well!!

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Smile It makes people wonder what you're up too!

j8ear

Hello again,

Last night j8earette jr came in at 2500 grams. This works out to a little over 5lbs8oz. She is doing very well, growing consistently and continuing to get stronger and healthier all the time. She is not out of the woods yet, however. Her heart is still beating like a premmie upwards of 150 bpm (that 110-120 stuff mentioned earlier was a fluke) and her respitory rate is still rediculously high, at around 80 to 100 breaths per minute (you and I are around 15-20). So she still has some progress to make.

We have been largely unsuccessful in compressing her feeds (bolus feeds) as she gets some pretty crazy esophogial reflux (heart burn) and has trouble with these compressed feeds as a result. Her respiratory rate is still to high to get her on a bottle, but she does seem to throughly enjoy mamma bears nipples for short stints....obviously Daddy's little girl ;-)

She is still in the Nicu at the earlier mentioned 'best hospital in the world,' however probably doesn't need intensive care any more and the Doctors (and insurance company) are working deligently to find her a bed in a transitional care facility. This will be the next step it seems before we can get her home.

We're getting closer and closer, but still need patience and steadfastness. It's amazing what you can summon up from within to cope with and handle life's little curve balls. I speak particularly of my wife and my daughter. The bear cub is a true warrior and momma bear is an absolute rock of support for her cub. Both truly amaze me

One scary theory some intern genetist came up with is that j8earette jr suffers from a condition called noonan's syndrome. Some obscure genetic mutation disorder characterized by a heart defect and an 'unusual looking face' ???? Whatever! It could result in absolutely nothing or in the long run an inability to function independantly as an adult. Who cares! The Resident wasn't so sure about the interns theories, and either way it changes nothing. The treatment...watch her closely. Duh...we're going to watch her closely regardless.

OK sweetie, your crib is assembled, your stuffed animals are in place and your closet is full of the prettiest dresses and outfits you can imagine. When ever your ready to take it for a test rest, play with them, or try them on, we'll be waiting.

My little warrior. I've got your back pumpkin. You can count on me. I promise this like no other promise I have ever made.

-bear

btw...as I was walking into the NICU last night one of the Attendings stopped me to let me know that everynight just before I get there j8earette jr gets all fussy and hot under the collar. Everynight, she said, she expects you to come pick her up and love on her, and the nurses love it too since they can concentrate on other things while I'm around. Turns out I'm kind of helpful! It's funny because I've noticed myself that lately at around my arrival time she is all hot and bothered, crying, and generally screaming bloody murder at the top of her lungs (don't worry pumpkin...you are, without question, entitled ), then as soon as I start washing up and wispering my little hocus spocus's in her ears she settles right down. It is tough to describe what a feeling of complete satisfaction and euphoria this brings ~me~. She's not quite smiling yet, but she is definately exhibiting some facial expressions, as a result of my presence. Almost like she is trying to work out exactly how those facial muscles work, and what the various contortions of them result in. I'll be bamboozled if she isn't working things out and learning herself a thing a two

__________________
It's alot easier to ask for forgiveness then it is to ask for permission.

ShaniFaye

Thanks for the update j8ear!!!! Your posts always make me smile...(as well as tear up) and that might sound funny to some people but I think it does a lot of us here, good to see such devotion. While the situtation isnt the best it could be you always seem to find SOMETHING to be positive about...you're a great man and that child is extremely lucky

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I want the diabetic plan that comes with rollover carbs. I dont like the unused one expiring at midnite!!

maleficent

Gack - pass the tissues again please.

Over five pounds? That's so awesome....

She may not be smiling on the outside, but she surely is on the inside -- nothing like a dad to settle down the rebellious daughter. It's an amazing thing that she is now capable of screaming her head off.

Continued good thoughts, prayers and wishes for the little one, and for her parents, all parents should be as caring and concerned about their littles ones as you are...

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j8ear

My Warrior is home, after 160 days. Now at 8 pounds and 21 inches tall. Still oxygen and NG tube dependant, but nothing that this proud poppa or the missus can't handle.

After I get my bearings back (do they ever return?) I'll sit down and bring the thread upto date on J8earette jr's last few months.

Thank you all for your thoughts and prayers,

bear

__________________
It's alot easier to ask for forgiveness then it is to ask for permission.

Averett

So awesome!!!

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Absence is to love what wind is to fire. It extinguishes the small, it enkindles the great.

maleficent

That's the best news I've heard in ages....

Congratulations - may you thoroughly all those sleepless nights and stinky diapers.

Enjoy her...

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ShaniFaye

almost 3 pounds since your last post...that is SO great...you take your time and enjoy having her home...but thanks for letting us know she finally made it to her very own room!!!

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I want the diabetic plan that comes with rollover carbs. I dont like the unused one expiring at midnite!!

Mr Cassata

Congratulations, and best of luck for the baby! I hope with all my heart that she grows up to bring you years of parenting pleasure. I know it feels bad to have your child being sick, but she's already getting better every day, and I'm absolutely sure she'll pull through!


Once again, congratulations!
Mr Cassata

Hash_Browns

This is wonderful news! I can't believe I missed it! Congrats Mama, Papa and Baby bear!!

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Smile It makes people wonder what you're up too!

mr sticky

YAY!!!!!!

That's awesome Bear!!!!
May she continue to grow big and strong and amaze us all!!!

__________________
The sad thing is... as you get older you come to realize that you don't so much pilot your life, as you just try to hold on, in a screaming, defiant ball of white-knuckle anxious fury

j8ear

Poppa Bear here.

J8earette jr is doing remarkably well and making momma and poppa very proud everyday . She is still oxygen dependant and likely will be for a while longer yet, but her progress is nothing short of amazing, afai concerned. Still pure warriorr princess in my eyes.

She weighed in at a healthy 12lbs 4oz a few days ago, and we have actually had to move her to the next size of diaper. Mostly because of what she is able to fill them with

Her eye sight is tip top, and the concerns with retinopathy of prematurity have vanished.

Her little heart is still someone problematic and her cardiologist believes he might have to actually "go in" to repair some cardiac myopathy, which I understand to be the unhealthy development of heart muscle from having to work too hard. It is kind of like how body builders muscles get taught and sinewy from extensive and strenous exercise. This is probably a few years down the road. Regardless she will need to remain under the close supervision of a cardiologist for most of her life.

She has been back in the hospital twice since she's been home. The first time was for a still inconclusively diagnosed fluid overload type pnuemonia likely caused by aspirations from bottle feeding, and the second was to have a PEG (percutaneous endoscopic gastronomy) installed in her stomach so we could eliminate the risks of an NG tube in her nose, and improve the functioning of her respiratory system. It seems to have worked splendidly. J8earette jr seems to not even be aware of the fat rubber tube sticking out of her belly, and from all appearances is not in any way shape or form in pain from it. It makes the pumping of her formula and the adminstration of her medicines much easier as there is no need to the check placement of the NG tube (which was one of the biggest risks associated with an NG tube.)

She continues to take small quantities from a nipple, mostly training and enjoyment as opposed to nutrition and just this morning our pediatrician suggested introducing some stage one fruits and veggies to her diet by spoon. My wife and I are very excited about this.

She continues to receive regular therapy from Speech, Occupational, and Physical Therapists, and they all report excellent progress.

J8earette jr is grasping both hands in front of her face (bringing them to midline) placing them in her mouth, and starting to enjoy outside stimulation from such things as a rattle, an overhead mobile, or her favorite, Poppa Bear's whistling. Her smile, which is relatively regular these days, is infectious, and her cry's are now differentiated into various needs, like CHANGE MY DIAPER, FEED ME, HOLD ME, or put my pacifier back in my mouth. She is still making mostly vowel sounds, but her reperatoire is expanding and a few consonants are starting to come through.

All in all while still slightly behind the curve for her adjusted age (just over 5 months now), we are very pleased with our bundle of joy. In fact, just the other day a nutritionist finally had her IN THE CURVE placing her in the 10-25th percentile size and weight wise for her adjusted 5 months.

By the way with ultra low birth weight preemies (not the smallest classification which is 'micro-preemie,' defined as under 860 grams at birth, j8earette jr came in at 880 grams) they measure an infants age two ways. One is actual based on birth date and the other is 'adjusted' based on due date. Most developmental milestones are measured against a babies adjusted age for at least the first 24 month.

Wishing you all a very Happy Holiday from my family to you and yours.

Best,

-bear

__________________
It's alot easier to ask for forgiveness then it is to ask for permission.

maleficent

Enjoy your first christmas with your little angel... I hope she gets spoiled rotten...

Thanks for the update...

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j8ear

Today j8earette jr is one year old. She comes in at a nice even 20 pounds and is 27 inches long. I have compiled the following photo chornology of her life so far:

jbear.com/joj

Happy Birthday sweetheart. You have no idea the joy you have brought to mommy's and my life. We love you so much!

-bear

__________________
It's alot easier to ask for forgiveness then it is to ask for permission.

ShaniFaye

oh my gosh, Im all teary....shes so beautiful....and BIG....wow did she fill out

Thank you so much for sharing j8bear

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I want the diabetic plan that comes with rollover carbs. I dont like the unused one expiring at midnite!!

amonkie

This thread has always been in the back of my mind, and Jbear, your daughter is absolutely beautiful, and a miracle she truly has been. Thank you for sharing her with us

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Calling from deep in the heart, from where the eyes can't see and the ears can't hear, from where the mountain trails end and only love can go... ~~~ Three Rivers Hare Krishna

tecoyah

You have all my thoughts right now....and respect beyond words for the love I see in this thread. You are an incredible Family.


I thank you for sharing with us all.

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Holding onto anger is like grasping a hot coal with the intent of throwing it at someone else; you are the one who gets burned. - Buddha

lindseylatch

You did really use numbers in her name, did you?

I'm so glad everything worked out well for you guys. My brother was also a preemie, and he's had some odd problems that may or may not be related (like wierdly flat feet), but never anything so serious as what you guys went through.

I have an odd question, was she covered with white hair? My brother was, and I've heard it's common among preemies.

__________________
"Those who can make you believe absurdities can make you commit atrocities"
"If God did not exist, it would be necessary to invent him."
"It is dangerous to be right when the government is wrong."
-Voltaire

maleficent

Wow --amazing... she is so adorable and absolutely beautiful... thank you for sharing those pictures of your little miracle... Followin this from the beginning I can't beleive it's been a year... I can only imagine what it's been like for you and the missus... those pudgey little arms and that smile of hers have to make your world a little brighter.

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questone

Prayers and best wishes to you and yours.

God bless your little one.

Hash_Browns

J8Bear, I'm very glad to have seen this thread And am sending many happy wishes your familys' way for sure! I'm glad they are taking such good care of her and keeping such a good eye on her conditions. She has some great parents for sure also!! Happy Birthday little Miracle

__________________
Smile It makes people wonder what you're up too!

j8ear

Sorry I missed this question. Yes she was. It came after she was about 3 weeks old, or really -2.1 months old ;-) Covered her entire body but was most noticeable on her face. They had name for it, but I can't remember what it is.

Just looked it up: it's called lanugo. It eventually went away, but was very soft, very white, and frankly very beautiful. We weren't able to hold j8earette jr at the time, but we could touch her gently through the isolette.

In the third photo on her site you can kind of see how her white hair is continuous from her eyes back. It was interesting because you could still make out eyebrows, as the hair was a little thicker where they should be, in spite of everything else also having visibly white/blonde hair.

I'll have a full update for those interested on her 'due date', which is the 21st of July. She will be an 'adjusted' one year old then

She is doing splendidly, even though we recently had a rather disconcerting genetics visit a few weeks backs.

I'll detail it for those reading in a few weeks.

Thanks again to every one who took a moment to read this account, to those who had good thoughts or prayers, to my wife who toils daily to make sure our warrior princess is superbly cared for....and mostly to you j8earette jr.

You are the sunshine of my life

-bear

__________________
It's alot easier to ask for forgiveness then it is to ask for permission.

Mister Coaster

Wow, I'm new to this forum and just read through your tremendous ordeal. I'm so happy to see that it does indeed have a happy ending.

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If you have any poo... fling it NOW!

maleficent

I am a completely unemotional person but this thread makes me tear up every time I read it - and I know what happens.. It's such an uplifting story about what the love and faith of parents can actually accomplish...

Yay for the little warrior...

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Elphaba

Bear, I just found this, too. I'm a little emotionally wrung out from reading this. (I have a pile of used tissues that no one would want to share). What a remarkable man you are.

How is your warrior princess and her mama doing today?

filtherton

Wow, bear, i'm amazed. You're an inspiration. Thanks.

j8ear

I don't want to leave the last few posters hanging, and want to thank them all (you too mal you old reliable) for the support and thoughts.

Both are doing splendly, today, yesterday, and I am confident that tomorrow will provide more of the same.

Stand by for a full update on j8earette's due date where she will be an adjusted one year old. It's but 13 days away.

-bear

__________________
It's alot easier to ask for forgiveness then it is to ask for permission.

j8ear

Hello fair followers of our saga.

Today is j8earette jr’s due date. Today she is an adjusted age of one year.

Over the course of the last few months she has progressed admirably, but still lags a little behind the curve even for her adjusted one year.

She is not crawling or pulling herself to a stand. She is able to sit comfortably, but not yet sitting herself or even able to roll from back to front. Front to back is no problem, but only by leading with her left hand. Most recently she has developed an ability to rotate on her butt, at first clockwise only, but now she can spin in both directions. She likes to use her arms as wings and keeps them straight out to her side while making small movements with her legs out in front. It is an absolute riot to watch.

She has two words in her vocabulary, that being dida and mamama. She has plenty of sounds, grunts and noisy outbursts of excitement and exasperation, but only uses dida when I walk into the room or to otherwise refer to me. This is definitely the highlight of my life so far. The missus doesn't buy it, but I'm certain that she also has mamama getting up to speed and consistently uses it to refer to her and her exclusively.

She is a stout and solid 19 pounds 7 ounces currently and has been pretty stable here, having seen upwards of 20 pounds to as low as 19 even, for the last few months.

One thing that has recently surprised me is how this little warrior is anything but delicate. She is amazingly strong and able to withstand the day to day bumps and knocks that an infant who falls over a lot, experiences. It's amazing really. She just shakes it off and goes about her business. One of the funniest things is her method of trying to sit. On her back, she tries the crunch method, i.e. she tries to bring her head straight up by flexing at the neck and abs. She doesn't get very far, except for a litte red in the face, and surely but slowly we're introducing her to the ‘roll onto her side, and use an arm to push herself up to a sit’ method. She's very close, I'm convinced and the experts assure us.

She continues to regularly see a speech (feeding), occupational (her occupation is playing) and physical therapists. All report excellent progress, and utter amazement with her strength.

She’s got 8-10 teeth poking through, and is definitely cutting more, as her agony would indicate. We’ve tried everything from Tylenol (tolerances too high, I think), to Orajel (causes her to vomit). The only thing that has worked so far is lemon slices. Although the novelty of this is wearing off, I think, so soon enough it’s going to be a matter of her strength just struggling through. While I hate to see her in pain, I am completely confident in her fortitude, as this is nothing to what she has already been through.

Feeding continues to be our biggest challenge as she remains dependant on her PEG. She is not particularly fond of the spoon and even pedialyte via nipple is less about sucking and more about the nice cool temperature of the drink.

She was evaluated a few days back, overnight, in a sleep study, and while the results are pending, the technician, and the missus, saw no indication of apnea or oxygen desaturations. It would seem that the overnight oxygen blow by, will be coming to an end, in the very near future.

We have had great visits with GI and Cardiology recently. Her reflux is in check, and her formula and caloric intake are excellent. Her dietary needs have graduated to more reasonably priced recipes, and her vitamin needs are adequately addressed by a Flintstone's. I take great pride in my daily routine, using a pestle and mortar to grind up a pill and dissolve it in water so it can be injected via syringe into j8earette's PEG tube. Her PEG site is in excellent shape, and we’ve learned how little it really bothers her by observing how she pulls and tugs on it herself.

Cardiology recently was one of the most encouraging visits we've had to date. Her cardiologist has traditionally been VERY cautious and sparring with any good news and always been very careful to make sure we are aware of how precarious our daughter's situation really is. Our most recent visit, however, which included a sedated echo, resulted in this very reserved and brilliant pediatric cardiac surgeon actually smiling, and while only being 'cautiously optimistic' was markedly changed from all previous appointments. I dare say he was actually encouraging. He continues to see abnormalities, and also believes that some cardiac hypertrophy (which I incorrectly labeled myopathy in a previous post), is definitely developing. This is the result of one side of heart having to work harder then the other. In essence the muscles on one side get stronger then the other. He’s not all that concerned about it, but wants us to be aware. He wants to continue monitoring her, but the next visit won’t be for a year.

Our most troubling visit since my last update was with genetics. Previous visits with genetics indicated some possibility of a genetic disorder called Noonan’s Syndrome. The geneticist wasn’t convinced this was a fact, and had led us to believe that the range of genetic disorder possibilities was from none to Noonan’s Syndrome. This visit however, the subject of another disorder called CFC surfaces. After all the recent progress, we were unprepared for this, and honestly of the mind set that whatever they could throw at us wouldn’t matter in the least. No change in our approach, no change in our care, no change in anything, but when I asked why this was being mentioned, the geneticist revealed that the likely hood of an individual with CFC living independently as an adult was almost nil. She was “just mentioning it,” she assured us, but wanted us to be aware of this possibility. It wasn’t till a few days after the appointment that both j8earette and I began to realize that what had occurred was us being prepared for a syndrome with the range now being Noonan’s to CFC. We’ll just have to wait and see, and even with this new possibility nothing has changed.

So that’s where things stand in our topsie-turvie lives right now. We are very happy in general for the great strides we’ve experienced, thankful and appreciative of those who have been there for us, and mostly just overwhelmed with the joy and peace that our little warrior has brought to the family.

To my wife and the rock that keeps the health care industry honest, and provides the superb day to day care that j8earette jr depends on, I thank you from the bottom of my heart, and love you like no other. You have impressed me of late, which if not for our warrior, I would have thought impossible. It is now clear to me where a good portion of her character comes from.

To j8earette jr: Know that you are my Scotland and I am your William Wallace. ‘Braveheart’ however, is reserved for you and you alone.

Best,

-bear

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It's alot easier to ask for forgiveness then it is to ask for permission.

maleficent

Thanks for the update... sounds like you have two incredible ladies in your life... you deserve 'em...

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ShaniFaye

your posts always make me cry.....thank you for the update and you and yours are still in my prayers

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I want the diabetic plan that comes with rollover carbs. I dont like the unused one expiring at midnite!!

Daniel_

That is a heartwarming story, and I wish you all the best.

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╔═════════════════════════════════════════╗
Overhead, the Albatross hangs motionless upon the air,
And deep beneath the rolling waves,
In labyrinths of Coral Caves,
The Echo of a distant time
Comes willowing across the sand;
And everthing is Green and Submarine
╚═════════════════════════════════════════╝

j8ear

bump....so I don't have to search to far to update this thread tomorrow.

Everything is excellent, and aside from some significant developmental delays, and some continued cardiac issues, j8earette jr is doing remarkable.

-bear

__________________
It's alot easier to ask for forgiveness then it is to ask for permission.

maleficent

I just realized the date of your first post in this extraodinary adventure... She'stwo years old... Happy birthday little one..Wow time sure flew...

/me waits patiently for the update...

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Elphaba

Have a wonderful day lil bear princess!

j8ear

While life, family, career, interests and what not have taken many a strange and interesting twist over the last several years, I am so happy to report that today we celebrate the seventh birthday of the most wonderful little warrior princess you've ever heard of!

Many challenges and oh so many joys. I come and reread this thread sometimes when things get tough (or even for no reason at all!) and it always adds focus and perspective on so many of life's challenges.

Someday j8earette jr, you might stumble upon my musings and the strangers who cared so much for your tiny little self! I hope you get as much inspiration from it as I have.

-bear

__________________
It's alot easier to ask for forgiveness then it is to ask for permission.

dlish

wow, just wow.

this just blew me away.

Congrats on the 7 years j8ear! after the trials youve gone through, it gives you a different perspective on appreciation doesnt it.

how is she doing at 7?

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An injustice anywhere, is an injustice everywhere

I always sign my facebook comments with ()()===========(}. Does that make me gay?
- Filthy