Days all messed up, it is Day 80 and 39 weeks old

Yes, we have just a little while left until the official 10/4 date of where she would actually have been due.

Oxygen up, feedings from bottle down today, very angry most of the day, just not having a good time.

So it was not the best of days in special care. My days are running together, hard to keep track.

But, we will try again tomorrow. She has not gained but 7 grams in two days. Lots of movement.

But I don't want anyone thinking negative vibes, she will perk up soon, she is just getting used to all the action she gets from feeding.

Hopefully she will be better by the due date. When she was supposed to be here.

Can you imagine, we have all experienced her womb growth for 80 days all outside. If it was all normal, we would be driving to the hospital next week and have many goo-goo and gaa-gaa pictures like a regular birth. But I honestly don't want to say that I want it this way, because it is tough. We all wish it went the normal way, but we have made it all the way to here, and we will continue to make it until she catches up to normal, but there have been some joyous moments, and way, way too many stressful, scary moments.

Right now, it looks like her birth weight will be 4 lbs 3.5 ozs 15.3 inches long.

Small yes, but look where she came from. Wow.

I give her credit, she is feisty. Going to make a hard time for a little while on her parents, but it will be ok.

Lots of laundry if the spit-ups and diaper overflows continue......yes overflows. She is doing more than the preemie diaper will hold but the next size up is WAY too big. Would really make her legs crooked.

Maybe the foundation will be able to make a difference in the diaper area..soon.

Day 77, Pink Day

The blood she received makes her look very pink. Rare in her case so far.

She took the bottle very good, however, we were interrupted by the doctor's rounds. So she did not take in as much as she was going to, but she has it, it is just a case of getting stronger and able to suck for longer periods. The doctor is not worried about anything and is happy at her progress.

He then said the very bad words, "She might go home on a few months oxygen..."

Let's all get together and vote against that, shall we. Let's not even say that. While it will not be a problem, I really, really am ready to get that stuff out of her nose and off her face. I am hoping that when she gets big enough with her weight, she will come off that oxygen.

But we are ways off from that....easily another 30+ days.....easily. There will be leaps and bounds in these days and some backwards, but we will trudge along.

Very tired. Preparing the home for her, painting, and keeping up with her, visiting, making sure we are there for the bottle, driving, eating fast food, everything, just is making us tired. We will sleep good tonite.

Also, the paperwork for the foundation is in process, once we get this moving, I know I said this week, however, I cannot speed up the process. It should not be long and we will get it. The printing and website will be the first thing. We will have a kickoff and a press release. It should really be by next week.

This foundation is for real and more and more everyday, I know families need it. Big time.

She keeps up this current growth, she will be at the 4 lb mark by the end of the weekend or sooner.

Late Monday Morning Review

Sorry this is so late of an update....things were a little haywire yesterday.

She received some blood yesterday, her oxygen needs were up, her spit ups were more frequent, and overall she was a little lethargic. Not what we want, so they did some blood work and decided that she needed some.

She perked right up and took 30 cc's out of a bottle in 22 minutes. She is getting the hang of the bottle quite well!!! Her oxygen needs are down some, but not down too much. It should improve a little bit today. She may be retaining some fluid right now with the added blood so once we clear that out, we could be okay.

The bottle, let me tell you, when she is hungry, bottle goes down fast. She is understanding that the bottle can cure hunger. That is great.

Another wonderful neurological development step is the fact that she can focus on her parents face. She stares for longer periods at our faces, placing them in her memory bank.

Sunday, she took a look at her daddy's chin, some facial hair was sitting there.

"What is that?" she thought to herself, "I must feel it!"

A hand was brought up so tenderly to the chin, and the prickly hairs tickled her hand so much that she shook it. But that tickle had some delightfulness to it.

"I must feel it again!" she thought as she raised her hand to the tickle stuff. Again, it tickled so much that she had to shake it. With her eyes wider than every before, she caresses the tickle stuff again and again, shaking her hands with delight a full nine times. She was loving it, she had fun with it.

All smiles were on her face after that, she had found the tickle stuff to be quite a happy time.

Ah yes, probably will be etched into my mind forever that moment. Her mother and I laughed at every time she put her hand to the chin. She did every one of them on purpose. It was very good development.

And a good fun memory to keep in there.

Oh yeah 3lbs 13 ozs.

Weekend Update with Anchorman Daddy

In today's top news, we are now 1652 grams.

This is getting close to the 4 lb mark that will show an increased growth spurt that is right on time with gestational age. The four pound gram mark is now been found to be at 1814, the same year we took a little trip.

Only 162 grams remain on our goal.

In today's other news, we are having better suckling from the bottle. There is a maturation taking place that is getting her to be more baby-like and feed from the bottle a whole lot better.

On a side note, she sleeps a lot better after bottle feeding. A Lot better. This and other items such as calories are being cited as the top reasons for our newfound weight gain.

Now to commercial.


******************************************************************
Heard of families going through the pregnancy only to find it finishing a little earlier than expected. Well, next week, we will highlight a special new item, dedicated to helping families with premature babies. Stay tuned, your donation can make a difference in the lives of babies right now.
******************************************************************

Only Cascade delivers the power to clean your dishes spot-free. The sheeting action coats and soothes your stomach with a new cherry taste with the electrifying power to shine. It softens hands while you cut through the toughest weeds with your new Troy-Built Power mower. The fiber in scrubbing bubbles will get your bathroom disinfected and keep the mosquitos away for over 2 hours. More than anything, you can rely on Dove to clean the air and make hard-starts smooth and easy. Stop and go driving requires a fresh taste that you will find in no other broccolli, which has more than enough vitamin C for your daily hygenic needs.

*******************************************************************

And now back to your program.

Parents were stunned yesterday when a certain chain of events led to an oxygen increase. It was found that suction inside the nose had not been done in due time. After a fellow nurse followed through, the oxygen level went down tremendously. An investigation to ensure that does not happen again quickly insued and was made known to the persons in charge.

Feedings are on schedule and are due to remain on time.

Head growth is doing very well and is expected to keep ahead of body growth for another couple of months. This will be cause for all persons around the world to affectionately know the condition as "lolly-pop" head.

Awake and alert times are being established as eye movements are also becoming coordinated when alert. These all show a maturation of the ability to focus somewhat and finally reveal to her that her daddy is very, very ugly.

No steps are available to repair the ugly problem.

And now in other news, Taco Bell has shown a huge increase in the sale of bean burritos, as they remain at $.99 along with chicken tacos, as they are low in fat.

Another story, a top website devoted to telling people about one girls' struggles through her journey has experienced a a growth spurt. Members in the area are encouraging visitors to the site to tell others, so that the story will continue growing across the nation.

And in our lighter side of the news segment, construction and paint renewal has begun at the home of said girl, preparing it for the eventual arrival in about one month.

In sports, the cheerleader did her routines yesterday in her isolette, obviously preparing for the rush and true cheers that will follow when watching football with her father.

And now that is all the time we have, we must go now and coming up next is the Water Tiddlywinks match you have been waiting for , Austrian Burchlkja Reisndltiew versus the American Fred Smith in the semi-finals of the World Open of Water Tiddly-Winks.

You don't want to miss it!!!

Two Bottles not so good...oxygen freaky

Today was a weird day. The oxygen was up most of the day and she did not eat as well as before, BUT she could have just been fussy, because after being held by us, she calmed down and went down on oxygen.

This could just be a result of off the caffiene and sleeping a little better. She has to work more versus not knowing she is breathing harder but breathing with her own muscle.

It will be better in the long run.

1606 grams. We have broken the 1600 barrier.

1831 is 4 lbs.

Let's now keep a counter on the website.........

2 Bottles down, 6 more bottles to pass around...

Today we took in two full bottles of our new 33 cc feeding. Man, we are stoking in the calories, but S...........................L.............................O......................W.............................L............................Y gaining weight.

We are not far from leaving the isolette and moving to a crib, current estimates are two weeks.

She is calmer now off the caffiene, so maybe we will see some larger progress than before. Doing very well, just waiting on the growth.

Her awake times are more alert times. There is sometimes a true baby quality there. Sometimes you get glimpses that she is starting to understand baby stuff.

Yes, today was very good, tomorrow, we feed the two bottles, the last two were nurse fed. We will be forcing her as she tends to "act up" for the parents. She will get over that now, let me tell ya.

Please be on the lookout Monday for our Foundation. It will begin on Monday. On Monday, if you would like to make a tax-write-off donation it would be greatly appreciative. The IRS fees and other prep fees are now standing at $1500.00 dollars. Our goal is to raise that next week to complete the paper work. Then we begin fund raising in earnest. The Jonna Lil fund will be finished and all proceeds go to the foundation to help ALL premature babies. We will have more news on this foundation next week.

2 Bottles down, 6 more bottles to pass around...

Today we took in two full bottles of our new 33 cc feeding. Man, we are stoking in the calories, but S...........................L.............................O......................W.............................L............................Y gaining weight.

We are not far from leaving the isolette and moving to a crib, current estimates are two weeks.

She is calmer now off the caffiene, so maybe we will see some larger progress than before. Doing very well, just waiting on the growth.

Her awake times are more alert times. There is sometimes a true baby quality there. Sometimes you get glimpses that she is starting to understand baby stuff.

Yes, today was very good, tomorrow, we feed the two bottles, the last two were nurse fed. We will be forcing her as she tends to "act up" for the parents. She will get over that now, let me tell ya.

Please be on the lookout Monday for our Foundation. It will begin on Monday. On Monday, if you would like to make a tax-write-off donation it would be greatly appreciative. The IRS fees and other prep fees are now standing at $1500.00 dollars. Our goal is to raise that next week to complete the paper work. Then we begin fund raising in earnest. The Jonna Lil fund will be finished and all proceeds go to the foundation to help ALL premature babies. We will have more news on this foundation next week.

72 days in the life of a preemie....

Yes, today marks the 72nd day of Jonna's life.

72. Wow.

Think about that.

2050 different checks by the nurses
94 trips to the hospital
over 600 diapers
over 115 blood draws
over 400 hours of staring
7896 miles driven
1728 hours of worry
over 30 nurses
6 books read
over 12 gallons of milk pumped
336 hours pumping said milk
1.6 lbs gained by her
75% beating the odds
2345 hairs lost ( I counted!)
1 foundation

A lot has happened in these 72 days.

We now weigh 3 lb 6 oz. We are taking in the equivalent of a 250 pound man eating 16000 calories, so hopefully we will start growing.

We are taking a bottle twice a day now. Once she tolerates that, 3, and so on until all by bottle and no tube in nose!!!

Looks like we will be getting baby-like here real soon!!!

1 baby. 72 days. A Journey that will continue ........stay tuned.

Wow.

Weekend Update on Monday with Anchorman Daddy

Well, this is a late edition of weekend update.

Just the facts, ma'am.

Ok 3 lbs 6 ozs. Weight gain slow.

Oxygen 21% 1 lb pressure. Great improvement!

Eyes, improved even further from today's eye exam. Now on two week eye exams for first time.

Off caffiene as of 5:00 pm. This will cause irritability for a little while but shoud improve overall weight gain and subsequent sleeping and feeding schedules.

Two bottle feeds a day one by us, one by a nurse.

See what happens tomorrow. This weekend has been very strange. Up down left right.

Go to Chili's and buy a pepper for St. Jude's Hospital. Soon you will be buying one for our foundation. Be ready.

Maybe found a way to stop some....

I found out something today and I only need to have a day or more on my experiment to see if what I observed today holds true.

I did a little something today while feeding and holding that allowed no spit up and got us to breathe 21% oxygen (what you are breathing right now) for one hour and 20 minutes. (My arms were screaming at me, she is only 3 pounds but hold 3 pounds out in front of you upright for that long!)

Does not mean anything per se, however, we held her upright and she could re-swallow the spit and also she had great saturations of oxygen. GREAT.....like air.

So we propped her up a little further in the bed and it has helped so far.

I now can't wait until she can get out of the isolette and we can prop her up even further. I think she will be fine, just hope she can make it for another pound! At four pounds we should come out of the isolette.

We will see. We hope to gain some weight today. Yep, that would be great.

Also, the foundation is real close to ready.....please keep an eye out, I should be announcing something next week.

The Goo from the mouth....

Babies spit up. All of them do it. But we can't afford to. Not even once. The pain DeSat's her and then she does not get the calories and she burns up the calories. Calories we need to grow lungs.

See the pattern here. It is a small thing, I know, a LOT smaller than her heart stopping or being on a ventilator, however, it is the most important thing right now.

But we can handle it, she just has to rest and rest and eat, on days she does not, she won't grow. Period. Today was not the best day, she was in pain for most of the day.

HERE ARE SOME OTHER DEVELOPMENTS I FORGOT TO MENTION!!!!

We are now OFF the VapoTherm, and on regular oxygen nasal cannula. Our next step from there is AIR! So we are the farthest along on breathing than we have ever been.

Also, our broviac, (our IV line in her right leg) was removed yesterday. Since we don't forsee (PLEASE) any other surgeries or IV fluids, it was removed.

I swear the next step is growing and growing. But boy are we slow at it. We are one tiny baby. It is going to take a lot of my cooking to fatten her up when she comes home. She told me she was ready.

Tiny. Very tiny.

3 lbs 3 ozs right now.

10 weeks to gain 1.4 lbs.

Talk about SLOW GROWTH!!!!

Spitting up a problem

That is our newest dilemma, spitting our food out. A lot of food out. Too much food that it is uncomfortable for her to be eating.

This can affect the way she enjoys milk, so we must be really careful. She may be too small to eat like a baby yet, we don't know. She needs to eat to grow to eat to grow.....see what I mean.

So the vicious cycle is a rough one, but it will be something that we just figure out how big her stomach is and how much she likes.

No bottle feed today, trying not to shake her to keep her food down.

Eye Exam - The MOST IMPORTANT ONE!!

We are now 13 days removed from our surgery.

We have just now started eating back where we were, actually we are a little past where we were. We are off the vent and breathing very good on 1 liter flow.

Then there were the eye exams! One of our checks revealed nothing, we had redness and could not see enough or look at the retina because of cloudiness and vessels.

The next checkup last week, we could see where we were not detached yet, we had no retinal detachment, but we could not see enough to see any regression or ANY signs of better vascularity. We had to wait again.

So this checkup had to reveal something!!! Anything. Even if it was bad, we had to know, are we going back to surgery or are we moving forward preparing for growth.

I am pleased, no, ecstatic to report today's results. We finally could see that the iris vascularity has improved a good 80%. That allowed us to get a good glimpse of the retina, IF the cornea and fluid is clear, which they were.

The doctor looked for our ROP and was going to assess it, to see where it was going, forward or backward, worse or better......

...........she could not find any. "What?"

Right, she could not find any ROP, the disease has regressed 100%, it is completely gone!!!!!!!!!
I cannot tell you how happy I am today. She will see the sky, she will see her mother, she will see how to color, she will see how to draw, she will SEE!!!!!!!!

My worst fears past the obvious one has now passed. We are not going to need another eye surgery.

Now for the bad news. We don't need eye surgery AS OF RIGHT NOW.....there is always a possibility of more issues, but with this report, I can say that all research points to a good outcome. I am officially going to ask you to stop worrying about it. She may need glasses, but she can SEE!!!!!

The final phase of growth must now occur. We are nippling the bottles and took in 15 cc's today from the bottle. That is the most yet. The other phase of growth must give us good results to get off oxygen. We must get off the oxygen as soon as we can. That is vital.

SO back to our first thought.........balloons put them back in the forefront of your mind and do as good with that as we did with the speedbumps!!

Thank you everyone for your attention!

Weekend Update with Anchorman Daddy

Snake Oil and Miscellaneous Dreams
A Play by the Weekend Update Players.

"Bottles, Get your bottles here!"

"Sir, do I need a bottle?" says the shy little girl.

"Here ya go little missy, why you are as small as a fruit fly. You sure seem like you need to try one of our Magic Milk Bottles. Why, inside this little bottle holds the key to everything getting better. "

"Yes, I am sure of it indeed. Everything gets better with our Magic Milk Bottles. Amazingly, even small fry like your self needs this bottle. It'll look big on you, but you should really try it, you look like you need it!"

"But sir, I don't know why but I am not even hungry. It's like I will always be small."

"Tut, Tut young lady, no negative sassafras pants around my booth will ya, it's bad for business, scares away my customers. Now let me let you in on a little secret if ya can stop for a second with all this nonsensical whining.....now..."

"Ok, you, you are holding up traffic along this walk way, you got a permit to operate a store here?"

"Oh yes, officer, I have all the correct papers right here....um....over here..."

"Yeah Yeah sure you do...now let's pack it up and move along."

"But Officer, I was just about to find out about a secret."

"Little Missy, my you are small, you need to understand, all kinds of people are going to try to tell you things that just are not going to be true....you have to realize that as small as you are..."

"Oh contraire, Mister Policeman, I was not going to lead this small lass down a path of untruth, she really needs my Magic Milk Bottles, for she can grow and be big!"

"Alright you, I have had just about enough of you..."

"Sir, Mister Policeman, Officer....if you let me explain, I can even prove that you have once had the Magic Milk Bottle yourself, that is why YOU are big and strong and grown up to care of people like me...er bad people..."

"I have never had your milk bottle....you are about to get arrested.."

"No sir, the ingredients in my Magic Milk Bottle are as natural as the sun, clear as the rain, and as wonderful as life itself. I prmise that if you allow just one sampling a day for this little, little girl, you will see a dramatic improvement in growth." Just ONE per day for now, then as the Magic Milk Bottle works it's Magic, you can give more and more and watch more Magic!"

"Oh, I don't know, what do her parents say?"

"Oh her parents think giving her a lot of this Magic Milk will be of great help!"

"Let me call the Commissioner...I'll be right back."

"Oh yes, little girl, we must hurry, if you just take a little of this bottle right now, we can prove our truths to the policeman."

"But I should not be taking milk from some stranger, I have never had this before..."

"Oh but you have...you just have not tasted it!! Here.... I will dip some onto this plastic thingie....try this!!!"

Smack...gulp,,"Ummm," smack, slurp.."not bad..."smack slurp "gre.....slurp...at!"

"See child, you really should give it a try!"

"First you tell me that secret!!!"

"Ok but we have to be quick, the police returns!! Now, you are a very small one, but right now, in this Magic Milk Bottle I have placed all you need to start growing on a path. What else do you need this to do?"

"I can't find my way home, I have found these three rooms and this is my little plastic house, but I want to go home!"

"Well this can get you there!!!!! That is the secret, if nothing happens bad, then this will be your ticket to home, when you drink my Magic Milk Bottle, you will get bigger, and you will be able to see inside your mind, that you can pick out the exact person on this street to take you home. Oh there are a lot of people who can give you the Magic Milk Bottle, but you will suddenly see two of them that can give you a ride home!!" "That is my secret!" What do you say?"

"Oh Mister really, a home!"

"Yes, drink it quickly"..

"Alright you varmint, you have to remove yourself from these streets and stop messing with the little girl!"

"But Officer, I want to go home!! And this Magic Milk Bottle can get me home!"

"How do you say? This man is not a good man, he does not know, but my Commissioner did say you could have one...."

"Thank you!!!"

"Thank you!!!"

"Now drink quickly...."

"Wow, this is a BIG Bottle."

"Only to you and only now...once you get bigger this bottle will get smaller!"

"Wow Mister, this is a lot of work but it tastes fine, sometimes I can't get it down!"

"You just keep working at it, soon it will all flow down and you will feel the effects and want to sleep and grow" "I have to go now....I will be back one day to check on you and give you more bottles!!! Keep Drinking...................."

And as the mysterious salesman drove away, the little girl continued to drink and drink, and grow and grow.....only time will tell. Did she follow his instructions, is he a bad man??

Stay tuned to the next chapter in "Snake Oil and the Miscellaneous Dreams!"


Written, Produced, Directed by Anchorman Daddy.

Starring Mammary Gland as "Magic Milk Man"
Also starring ...

Intern Slowpoke as the Officer
Main Doc as the Commissioner
and Jonna Lil as the Small, frail, Tiny tiny little girl.

Quick Post

Our feedings are now up past where they were pre-surgery.

They are also administered more baby-like in that she will get "full" every two hours. If she handles that she goes to 27 cc's every three hours. Much more like a newborn would.

Just wanted to give that good news. Weekend Update on weight, "Why we are still Losing?" and suckling, breathing and swallowing, "In what order are those?" all coming up this weekend on the Weekend Update with Anchorman Daddy.

No documents were forged to create this message.

Sleeping

Today is about sleeping. She slept.

She was taken off all IV today and is now on full feedings with milk and additive. She is very low on oxygen and low on pressure.

Soon, if all continues to go well, we can go to the next phase of just oxygen up the nose without super pressure.

Not much happened today at all, she may need blood after tonite's labs, we will see, and that will help A LOT with the oxygen needs.

She looked pale so the blood may be possible.

She slept today, did I say that?

And also today she did something ...like really neat....a .... sleeping thing....yep.....

She slept. Probably low on blood.

Sleepy Day...

Today was just a normal, no news day.

We went up on our feeds and tolerated that very well. By the end of today, we will be back to pre-surgery feeding. Our oxygen is about 27% on 2.5 liters. That is really good.

There is talk of her coming home on an oxygen tank. We are really discouraging that talk as much as possible. While I don't mind, I just want to make sure we continue the weaning process and growing process that could possibly send her lungs to working super.

If her gas this morning shows good, weaning will still be possible. While we don't want a setback, we do need to make her step up and act like a baby. (Mental note: wait many years, where I can see myself tell her, "Stop acting like a baby." and then remember that line and laugh at myself)

She just needs to continue to grow and see Mommy and Daddy and prepare to be a baby. That is the goal until this eye exam reveals something. All of this could be a setback if we need surgery again.

Eye exam....sorta

Ok, the big day arrived, sorry this is so late in posting.

The eye exam went......and is over.

And we have another week. The good news from the eye exam is that we have had no progress towards retinal detachment. However, we cannot see if we had progress in regression.

So from this eye exam, take with it the fact that we are still sitting here waiting on an eye exam on Monday, and not another surgery today. Not the worst, not the best, actually not even bad, just not done.

Our feeds have been increased, we are now off "banana juice" so that we get all the nutrition from milk. We are not back to where we were, but we are going to be there by Friday.

Also, probably next week, we will attempt to see if she can handle a full feeding all at once like a normal baby. Right now she constantly gets food dripped in....but next week we will put it all in and see if she can digest it correctly. This will get her more on a "baby like" food schedule. Once this happens, weight will go on more easily.

Her oxygen needs are doing better and she will be getting close to pre-surgery levels I think by next week.

Pretty uneventful as far as most things go. But not backwards. We will hold her today and see how she tolerates that.

And now for something completely different....

Special Care.

they encourage holding, bonding, everything! Now unless something bad is happening we can hold her. We can hold her all day if we want.

They monitor oxygen consumption very seriously and are taking steps to wean her off the VapoTherm. It really is a different sort of care.....say...special?!?

I mean that it is different from the critical care, in that they are focused on keeping your baby alive, while Special Care is focused on giving your baby a life. And a life with you. Preparing it to be a baby and asking it to grow up and get ready!

We were also told that we will be bringing it home on a monitor, which she will wear for about a month and if nothing happens by then she will be free of contraptions attached to her and probably spend a good deal healing that tender skin.

It was a fabulous first day in Spec Care. Now I await my most important eye exam in the morning EVER.

Please make the last thoughts before you sleep tonite to be the thought of happy strings stopping at the speedbump. Thank you.

Weekend Update with Anchorman Daddy

We have had some issues with the blogger over the weekend, so that is why this is very very late.

Now, what has happened in the last two days....nothing except
WE GRADUATED TO SPECIAL CARE!

That means that for our next 8 weeks, we are now out of critical care and into the care of becoming more baby-like.

Our due date being 10/4 means Jonna is supposed to be getting to the point of birth, while admittedly she has had a harder road than a womb baby, she should be working on suckling, swallowing, and breathing while swallowing(seems like that would be instinctive, alas, another thing a preemie has to "learn" because her brains missed all that womb growth).

Yes, you don't breathe when you swallow, try it!! So actually preemies have to swallow and then remember to start breathing again. Sometimes they get caught up in the act of swallowing that they forget to breathe.

So our little 2 lb 15 oz butt has been transferred to special care in room 6. That should be our final spot with no more movements but home. So it should be a great day, but of course with change comes a little static. We now have to begin anew with new nurses, we now have a new corner to visit, things are different. BUT it is also postive because there are less alarms in special care, quieter, mostly darkened rooms. The nurses are a different breed than Critical care nurses and rightly so, they take care of the babies that have "made it". Critical care has to deal with all the issues that a preemie must being life with, breathing, heartrate, or just plain living! Once they are stable, life's automatic breathing and heartrate portion of the brain has matured enough to know that the chilc "should" be fine, it is time to start learning other baby skills.

I have to give my proper respect to critical care nurses right now. They are incredible. My foundation will create scholarships for these nurses and hopefully get more to help. Turnover is incredible, but these nurses have to know, that they create little bundles of joy for families. They make the impossible possible. Yes, they also see there fair share of tortuous pain. They have to deal with all the bad also. I would like to say this, that you cannot change the course that a child has chosen to take. As a nurse, you can only do what you can do, if a child does not or cannot make it, you cannot take it personally. I know it would be very hard on me with what we have been through, but I would, as I do now, feel that I made all the right moves and it just did not work. There would have to be peace in that.

Anyway, please have a little thought for the critical care nurses that have brought Jonna through and forward, carrying her little 1 lb 12 oz sack of sugar from womb to open warmer to isolette to open warmer to isolette, from oscillator to vent to oscillator to vent to cpap to vent to oscillator to vent to vapotherm to vent to vapotherm (wow), from 801 grams to 1359 grams, from 14 inches to 15 inches, from picture 1 to today's picture, and from the down and out to the alive and kicking. She has came forward and hopefully we are on the fast track.

Special care is going to nurture her, things are slower, life becomes more baby like. She has til 10/4 to realize that she is a baby and needs to be acting like one. Growth now begins in earnest. They will probably try in a few weeks to get her to start eating from a bottle, then nipple, she has to learn how to get there. A whole new realm of growth for us, there will be more holding, more touching, more interaction than ever before. It will be a very interesting time. I can't wait to give my special care reports.

Eye exam tomorrow morning. That is the most important thing in the WORLD right now.

Holiday Extra Update with Anchorman Daddy

Two days into the Labor day weekend and not much has happened except

that we GRADUATED TO SPECIAL CARE!!

That's right, we are now in room 6.......the room closest to coming home. We are now in our final spot until home.

We are looking at 8 more weeks.

What this means is that we are now stable enough to be away from the critical babies. We are in a quieter room, the nurses are now going to begin getting her to be more baby-like, like testing her suckling ability and swallowing capacity to prepare her for breast feeding. She enters the new phase of her care, the grow and be a baby phase.

In this new quieter environment, probably for the next two weeks, she will stay sleeping, then once her growth gets moving a little on the heavy side, then more holding, more interaction, more scheduling of feeds, more of everything closer to babyness.

We are up a little on our food, we are now at 2.2 cc's an hour, not the best comeback, but at least it is more than none. We still have our eye exam on Tuesday......all is not over with that. Special care or not, that is the most important thing in the world.

BUT let us not take anything from the graduation...if critical care is behind us, then we have made progress.

Woohoo!

Now let's look at this from a weird perspective....she was scheduled to be born on 10/4, she has to get to the feeding point by then, as she would have needed it by then. She had some setbacks to her ?womb?critical care? growth but it is really time to pour on the growing and get ready for birth number 2.

Realize all we have witnessed on this child, realize all that she has overcome. She honestly has beaten the odds to be with us today. The struggle continues, but today, it is a little easier as we stepped a measurable bit forward.

I can't wait to give my report on how our days in special care have started out!

Awaken day!

More than anything else that happened today, she was awake and interacting with us for over an hour. We keep testing the eyes to make sure she can see, because the eye surgeon checkup was not anything at all. She came to look at the eyes and could not see enough to determine if it was good, bad or ugly. So we wait til Tuesday.

I die slowly until Tuesday in which I may jump to the moon. Send help, I will need oxygen in space.

We are also being moved into another room temporarily as they clean our room. 10 babies being moved to the room 2. Usually you don't want to make this room as Room 1 is worst and room 6 is close to home.

We have started and stayed in room 3 but we were told we should have started in room 2. We are breathing good low oxygen and moving forward on the pressure again down to 5. So hopefully by this weekend, we move back to where we were.

Labor day weekend starts in 12 minutes. Hope everyone out there has one fabulous time. I thank everyone for reading and please enjoy and love one another.

Special Holiday Weekend Update is next on the JonnaBlog.........

Back to normal...?Normal?...ok regular....WOW!

Yes, back on VapoTherm off the ventilator!! Woohoo! What a difference a day makes. They are also dripping in feeds again and hopefully if all goes well, she will be eating tomorrow back like she was. If all goes really well, she will be back exactly like Monday, eating, gaining and growing with better eyes.

She is breathing the lowest oxygen she ever has, she has impressed the doctors with the way she handled the ventilator. Coming off the way she did made a huge hit in the NICU. Everyone was so happy! Needless to say, Mommy and Daddy can maybe have one little weekend of relaxing a little from the stress. Daddy not sleeping for 3 days took a toll. If we have a good day tomorrow, we can be back to where we were and going forward!

I cannot stress enough how the last two days were polar opposites. Amazing incredible differences. On one day she was having SO many problems and today she looked at us and gave us a long awake time to bond again, once while suckling daddy's hand saying, it's ok, I was just sleepy, but now I am HUNGRY!!!! She really made daddy relax a little today, then she went back to sleep giving me knowledge that we are once again breathing on our own and just have to grow.

What a WOW........

Very funky day...

Today is not one to remember if only to bring up weird things that occurred. Many many many many DeSats today. Quick ones too. She seemed to be in a limbo land....

waking up from the anesthesia and then not being ready to wake up and then being too tired to be moving, then not breathing from the anesthesia then not keeping oxygen then having problems.

Amazing day. It was really hard and taxing to watch today. With the already little sleep that we have over this surgery, we struggled through watching very bad things and trying to stay calm and focused. It was difficult. Very.

BUT she is doing better on the ventilator than expected so that is good.

She may have an infection so they have begun antibiotics to make sure to stop it at the pass.

Everything was different today, however, I think she will come out of it fine. She had a little bleeding in the iris of one eye, and the doctor says that should go away in a couple of days. So fat, everything seems to be moving forward, she just isn't waking up from that anesthesia as fast as Daddy would like.

The doctor is very calm about all the acitivites today, so I will now try to relax also.

I ask of all my readers, to silently thank every one of those nurses in that NICU. All of them, every single one of them has had a hand in making Jonna have a life. They have watched her do very well and helped her through the very difficult. I also cannot say enough of her doctor, he is one very impressive doctor and has such incredible, knowledgable experience that I feed off of everyday. I honestly can say that these people and people like them all over the world, make families possible where there might have been impossible. Right now, think about that. Please take the time right now to silently thank them all.

The foundation will make sure to help nurses in all facets of their lives. I owe them that.

Well, I can't really form complete sentences any longer.....hopefully will be more rested tomorrow.