j8ear

Unfortunately she was only 25 weeks into the fetal process and therefore about 3 months early.

She came to us weighing 1 pound 14 ounces, and is 13 inches tall.

Momma Bear is doing great physically. and all things considered tender and tiny j8earette jr is fighting like a warrior, and frankly seems to be thriving.

This is my first chance in the last 48 hours to get away from the NICU, sit alone, and ball my eyes out at the thought of the most precious of gifts just bestowed on us.

We love you so much sweet heart. Keep up the fight, we're with you all the way!

Best,

-bear


Edit...so as not to bump this thread with a response...thanks all for your kind words. We've had a set back or three...Chronic Lung Disease, Patent Ductis Arteriosus, general agitation resulting in self extubation, etc...but all in all she continues to progress. My little warrior I'm Keeping the faith and brave front....mostly for the missus, and somewhat to keep me sane. Talk about absolutely ZERO control of things. I have never felt so useless in my life.

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

bparker805

My most positve thoughts and energy go out to you and your family.

Averett

I have two cousins who were born premature. I believe Karla at 28 weeks and Casey at 24 weeks. They are now 11 and 9 with no health problems at all.

Premees (sp?) do so well these days, health care for the little ones has vastly improved. Good luck to Momma bear, Daddy bear and little Baby bear

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

Silvy

Good luck to the three of you!

Best wishes from me.

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"Do not kill. Do not rape. Do not steal. These are principles which every man of every faith can embrace. "
- Murphy MacManus (Boondock Saints)

thenewguy

Wow. I am wordless.

Good luck to you and your family, and congratulations. Remember to take some time and breathe.

:::OshnSoul:::

Bless your heart, and many blessings and prayers for the mother, and of course the new little one. Sounds like a fighter who wants to live their life.
Congratulations and much love.......

raeanna74

Congratulations and I will keep you all in my prayers.

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"Always learn the rules so that you can break them properly." Dalai Lama
My Karma just ran over your Dogma.

amonkie

She just loves you so much she couldn't wait to join her family! Be sure to show your love as much as they'll let you hold her- it's been proven it helps their chances by leaps and bounds!

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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

mr sticky

Ditto that!

This time will be tough, make sure that you can keep lines of communication open to everyone involved. Everybody's scared, happy and tired. Expect an acute emotional rollercoaster.

Other than that, enjoy every little nuiance, parenthood IS the greatest adventure!

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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

sexymama

My chosen twins were 2.9 and 3.12 at birth. Both are 22 and thriving now. My advice -- spend as much time as possible at the hospital touching and talking to her. She needs you the most now. Congrats and best wishes -- daughters are wonderful!

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If you can go deeply into lovemaking, the ego disappears. That is the beauty of lovemaking, that it is another source of a glimpse of god

It's not about being perfect; it's about developing some skill at managing imperfection.

mr sticky

j8ear, we're all still thinking about you and your lil' bundle!

We love the update...keep us posted, and feel free to BUMP!

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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

minyn

a long process undoubtedly but one that will be filled with potential for many obsticals and even more reasons to celebrate in comparison to most parents.

but no less, you are in my basis for good vibes being sent out.

and if anything, keep us updated. i think many of us will be checking back.

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"Woke up this morning with a blue moon in my eye"
~A3 "woke up this morning"

"Don't compromise yourself, you're all you've got." -Janis Joplin

j8ear

Quick update. Our daughter is one month old today and comes in at a whopping 1230 grams. Almost 2lbs 12ozs

She continues to progress and is being fed 5ml of breast milk per hour.

She has developed a quite serious Chronic Lung Disease. It is rather common and is a catch-22 caused by the oscillatory ventilator and the free radicals of oxygen she is served, both which she needs to continue 'gestating.'

She is also rather active and feisty, almost to her detriment, as she spends a lot of time fighting the machines keeping her going. This results in 02 desaturations, requiring MORE oxygen, etc....viscious circle kind of stuff.

Hence, she is also on a fentanyl drip to the tune of about 2ml per hour. This seems to calm her down quite a bit.

I am very encouraged by her agitation and consider it a sign of strength. The doctors on the other hand, consider it a burden and prefer her to be sedated, yet still think her strength in the long run will prove to be key to her survival.

I have run into a serious brick wall with my health insurance, as the neonatology department of my daughter’s hospital has been designated a 'non-participating provider.' This is a third, oft unmentioned classification of provider in addition to 'in-network' and 'out-of-network.' Both of which are 100 percent for these circumstances. The designation was made after the prenatal care began, but as you can imagine the health insurance contract has that little fine print which says, we can do what ever we want, for whatever reason we want, without explanation, and without notification, and should you challenge us, when you loose you will be required to pay for our over priced slick suit legal staff to do whatever we possibly can to smear and defame you, in what ever fashion we deem, to prevent you from winning in court. Typical. Any way...that's just a gnawing headache in the grand scheme of things.

We continue to take things day-by-day and test-by test.

I am thankful for many more successes then failures, and can't wait to hold my daughter for the first time.

best,

-bear

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

mr sticky

Bear-thanks for the update- WE HAVEN"T FORGOTTEN YOU GUYS!!!

Plus- don't worry about the financial end just yet- the hospital usually can work with you about stuff like that.

You're doing the right thing by thinking of the family stuff first.

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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

denim

I can't seriously imagine someone saying

"Nope, if the insurance won't cover it, I guess we'll just have to terminate life support. Sorry, kid. We'll sue the insurance for 'untimely death'."

j8ear

Actually that's exactly what my attorney advised. Not to worry about it. Every single hippa waiver, care authorization, and billing acceptance form was signed under duress as the misses was in excrutiating pain from being in labor. They are worthless. In reality I hold all the cards. The hospital was aware of the insurance I presented with, AND was aware of the care which would be required of our daughter. They are one hundred percent negligent in failing to notify us of their greedy little squabble with my insurance company. It is likely the hospital will eventually take what the insurance is willing to pay, or they'll get nothing, because I will not hesitate to BK for a million dollars. (This is the newest development). He also advised that I shouldn't even need a lawyer until (unless) I get sued. Most attorney's would likely advise otherwise, since billable hours are billable hours. I am please with that.

Now, I don't need to create waves with them, as they are caring for my daughter. We'll slap em around later if it becomes necessary.

Anyway, like I said this issue is little more then a gnawing headache in the grand scheme of things, and since my meeting with counsel this morning, even less so

My concern is for j8earette jr. I love you sweetie, can't wait to hold you and think about you all the time. Get strong my little warrior....we remain here for you one hundred percent!

best,

-bear

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

j8ear

I think I misread your post Demin. Your right. They (the care-givers) can't say that.

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

maleficent

This is such a touching statement.

I had friends in a similar situation many years ago, Abby is graduating from high school this year. One of her favorite possessions is the journal her parents kept the first 7 months she spent in the hospital. It made and still makes her feel so incredibly loved. (Yah yah, all parents love their kids, but this just made her feel extra special)

keep a journal for the little one. She's off to a rocky start but has no where to go but up, and she's got parents who love her very much -- thats nice for kids to know.

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Averett

I'm so glad to see the updates. Sounds like youve got quite the fighter on your hands

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

losthellhound

When I was born my parents went through something similar, lungs collapsed, I turned a lovely color of deep purple.. Made for a rough start but I think I turned out okay.. Our thoughts are with you, Im sure she'll do great

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"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

j8ear

You've got that right. Chip off the 'ole block if I do say so myself.

The neonatology staff calls her "The Wild One!"

Not sure if it's more for my benefit or if it's really how they feel (I'm such a cynical bastard), but either way...

I like it.



-bear

BTW...Thanks again to all for your kind and thoughtful words and sentiments. Muchos Gracias

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

j8ear

Quick update.

Wife and I finally got to hold our little girl as she was moved from the oscillatory ventilator to a conventional vent.

Kangaroo care. It is the best feeling I have ever had in my life.

Things took a sharp turn south soon after the ventilator switch, and the holdings have stopped temporarily. She coming back around though...so time will tell soon...I hope...once again.

-bear

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

Averett

I was wondering the other day how she was doing. Glad to see you got to hold her for a little bit.

Sounds like she needed time to adjust to the new ventilator.

Continued best wishes

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

Amethyst

Wow that must be really tough. I will pray for you and your wife and your daughter! Hang in there things will get better.

mr sticky

Damn- I hurt for you every time I check this thread. ( I check pretty often though, What can I say? We care!)

Thanks for the update- and as always..in our prayers.

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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

Esco

Prayers and best wishes to you and yours.

God bless your little one.

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The user formerly known as BlingBling

answerC

My daughter was born 3 1/2 weeks early 2 months ago. While nowhere near as early as your's, I empathize with you and admire your strength. It's hard to be strong for them when you feel so helpless some times. May all of you keep getting better, stonger and healthier.

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Stop Bush Now!

j8ear

She's back on the oscillator. They decided to stop fussing with and manipulating the settings on the conventional ventilator and reverted to the noisy old oscillator.

This is a major set back. Her tiny little lungs are really struggling. A bronchial spasm here, an upper right lobe collapse there, a brady cardia every once in a while...these things are really taking their toll. She has also been diagnosed with a pulmanary stenosis, which will probably require heart surgery. This is apparently unrelated to her current lung predicament though. Apparently not definatively.

A cat scan on her lungs will be done to confirm.

Her last cat scan was on her brain after they saw 'abnormal spikes' on an EEG, and suspected she had possibly suffered a stroke. This turned out not to be the case, and the spikes were identified as irritation only. Development and growth of the cerebellum.

The pulmonary artery exchanges blood between the lungs and the heart. The stenosis indicates that the valve is too small to efficiently do so. Ballon valvuloplasty is the indicated surgery.

She is responding well to the change and seems much more peaceful and happy. Of course this is likely more from the return of a fentynl drip sedation.

Either way her Oxygen saturations, heart rate, and blood gases have since stabilized. This is a good thing.

Man is this a roller coaster ride.

Of course were still rooting for you sweet heart, and with you in spirit every step of the way.

Continued thanks for everyone's encouraging responses, prayers, and thoughts.

best,

-bear

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

amonkie

I'm keeping your little girl in my prayers.... I spent a lot of time in the hospital when I was a baby as well... babies are so much stronger that most people give them credit for. Your daughter is truly a fighter, and she's got the best parents behind her!

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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

highthief

Man, as an expectant father your story gives me both a big lump in my throat and courage to move forward. Best of luck to you, your wife and child.

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Si vis pacem parabellum.

flamingpeach

I wish you and your family the best.

I can't even imagine the heartache you are going through. Your daughter will have quite the story when she comes out of this.

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I've eaten my veggies all my life so bring it on, I am educated and strong for the revolution.

j8ear

She is 85 days today I think. Weights is now 1700 grams. She is still vented. Now on a Dräger babylog 8000. Same people who make the rebreather tactical diving rigs.

j8earette jr has been moved to what is arguably the finest hospital in the world, as she has some complex maneouvers to make and some serious procedures to navigate through.

She is a very sick little girl.

She is a candidate for this procedure today:

http://www.healthatoz.com/healthatoz...uloplasty.html

And is at present third in line for this afternoon in the catheter lab. Likely upto 20 catheter procedures will be performed today. Unsure how many will be neonates. Actually I'm really unsure about everything. ~whew~

Apparently recovery can be as simple as a band aid and a nap.

She loves more then anything to be swadled and held tight with an ear on your heart. She calms so beautifully.

I can't wait to hold you again baby...

-bear

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

Averett

Glad to see she's getting such great care.

Sounds like some pretty intense times. But she's doing so well! 80+ days is great.

I always tend to think that "I'll keep you in my thoughts" is usually an empty blanket statement. But I will honestly do just that. And I'll be looking for an update when you get the chance.

Continued best of luck

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

Hash_Browns

Bear, I know how hard this must be to face everyday, and to share it openly takes even more strength, that right there tells me she will be a fighter because her Daddy is a fighter, as well as her Mama Bear must be too!

She will be in my thoughts and prayers, and I will pass her story on to others who will make sure to send the same great vibes everyone here is.

I know my name is a bit new, but it's a blast from the past, and this place is a great one for expression and so I express my deepest gratitude to your caring and giving to your daughter, some kids with less problems get half the love you seem to share with her already. Thanks for being one of those kinda Dad's!! She will love you even more and fight even harder to repay it all plus some

Best wishes, hope to hear that Little Bear is doing well!!

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

j8ear

The procedure went without complication.

So far she has needed nothing more then a band aid and a nap.

I am very thankful.

More to happen. Broncoscopy, triaciatomy, and continued, yet modified ventilation.

Holy smokes, where do we draw the line? So far j8earette jr decides. She goes through it , and wields her uncanny fortitude coming out the other side better, faster, stronger.

I have nothing compared to this little girl. I am already putty in her hands, and a slave at her defense.

I couldn't be happier ;-) ,

-bear

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

amonkie

Yay! I still have a stuffed animal I was given when I was in the hospital for several months as a baby. I think my parents squeezed it more than I did at the time, but it's a nice memory to have to remind both me and them that we CAN get through the tougher times in our life.

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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

j8ear

j8earette jr extubated herself yesterday and is now breathing on her own, with only a slight assistance from a machine called a Vapotherm, which provides temperature and moisture controlled oxygen enriched gases into her nose to use as she wishes.

After her heart procedure they decided to for go a broncoscopy and manage a careful extubation plan including a course of steriods prior to removing the ET tube, and see how she repsonds. After 4 doses of an 8 course round of dexamethosone for her triachia she extubated herself, and has been strong, stable, and peaceful ever since. Pulse oxygen saturations have been normal, and as she approaches term her heart rate is predicatably coming down from around 150-160 to now around 110-120. As her due date approaches on 7.21.04 this should come down even more to around 80-100.

Things are back on track. She is hovering around the four pound mark having been as high as 4lbs2ozs (1890 grams), and was last night 1740 grams (3lbs8ozs).

I am a very happy father. A light at the end of tunnel is clearly visible.

I saw her sneeze last night as I was holding her. Her voice is not quite ready yet, but reports of some hoarse grunts, and barely audible yelling has been documented. Soon she'll be able to make noise when she cry's. As odd as it may sound, I can't wait to actually hear her cry.

Next on the plan:

1. Bolus feeds. Currently she gets a steady diet of mom's breast milk, fortifide with upwards of 30 calories per 100ml at a rate of 10ml per hour. This is delivered through an ND (naso-duodenal)tube which bypasses her stomach and goes right into the duodenum. This I understand to be the bottom of the stomach and the top of the small intestines. Helps to prevent reflux of gastric chemicals, which have bothered j8earette jr since the beginning. Anyway, bolus feeding means first re-terminating her feeding tube in the stomach, and instead of continuous feeding she will get one hour on, three hours off.

Then she gets put on a nipple.

We're getting close

We painted up your room for you sweetie. We can't wait to show it to you.

best,

-bear

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

ShaniFaye

I tear up every time I read this thread....You are a might strong man and its So great to see you love for your child...I havent posted before but I do think of your family often and you're 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!!

Antikarma

I can only pain to think of what you go through. I have two healthy daughters and I think, in your shoes, I would not be half the man you are now. Your daughter, your wife, you, you are all in my prayers. I cannot PRETEND to know what yo go through.

As a Canadian, I can't even pretend to know how your legal battles go. I pray that all is well. Do not give in to any pressure, keep up the good fight. As you've shown us, it's worth it.

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"Whoever you are, go out into the evening,
leaving your room, of which you know each bit;
your house is the last before the infinite,
whoever you are."

highthief

Sounds like she is kicking ass!

Way to go!

__________________
Si vis pacem parabellum.