Doctor visit...another 1.5 ounces

We gained another 1.5 ozs to 7lb 1.5 ozs.

We also went into the hospital for an Respiratory therapist to check our oxygen saturation since we do not have a pulse oximeter at home. Jonna, who cannot do two things at once as you know, had a bowel issue and she was late on Prevacid and just finished feeding. We all know what the outcome is going to be on that. Everyone that has been following this website knows all of those issues causes oxygen problems. So, we find out she still needs the little flow of oxygen and she needs to grow some more to get over it.

No big deal.

Leaving her on this low flow of oxygen is not a problem. My guess is she is gaining strength everyday, and if she keeps gaining and making strides, we could be off the stuff by the new year. My Thanksgiving home prediction was true, so I will talk with her to see if she can make daddy correct again.

People, I have to tell you about her exercises. She really can scoot on her blanket when we do "tummy time". She also can squat herself up my chest twice for leg extensions. She loves TT and usually ends it by sucking on her hand or the blanket.

She is really doing wonderful. She takes the car trips very well, adjusts herself and has a good time at the doctors. Smiles all around. Everyone likes to look at her because she is a small peanut and that is fine. Can't wait to be able to take her around the world next year so everyone can see her wonderful blue eyes sparkle.

9 days ago...

We left the hospital nine days ago. We weighed 6 lb 3 ozs.

First doctor visit 6 lb 5 oz.

Second doctor visit 6 lb 11 oz.

First weight on our new scale 6 lb 13 oz.

We will continue to weigh every 2-3 days corresponding with her bath night.

Tonite was bath night and change the tape on her face night. (She loves that!!)

Tonite, we weighed a 7 lb 0 oz child. Woohoo!!!!

Yes, we are 7 lbs!! That is 12.25 ozs in 9 days!! She is drinking anywhere from 45 to 60 cc's a feed. We were told to do 40. From day one, we got in more than that. Now she is voracious and eating very well.

She is currently mad at us for the face tape, but her nasal cannula was crooked from her wetting one piece of tape on her right side. This caused it to be in only one nostril. No problems of any kind with that. In fact, there were many times where she had none in her nose and never has ONCE set off any alarm!

We have had many false alarms, but not one single positive. This thing will go off and tell you she is not breathing while she is laughing at you pinker than a pig. But I am glad for it because it allows sleep. Without it I would stare at her all night.

But I think she will be off it and oxygen real soon. She is growing very well. I hope that we can keep this up. Another 10 days or so....8 lbs?? 11 by Christmas?

I will leave the Thanksgiving thing up one or two more days....some people only see the site at work.

Wednesday Morning Good Feed....

It is 2:38AM on Wednesday Morning. She just took 45 cc's out of her usual 60 with no break, burp or issue. These AM feeds are when she is calm and does not fret. I wanted to update this for all the nurses back at NICU that I can't reach on the phone.

Since we have been home, we have not seen any major spit up like at the hospital. Wet burps, multiple wet burps, and slobber, but not a major spit up where she loses half her feed. That is so awesome. She also takes about 60 cc's a feed. She is actually voracious. Screaming for food and drinking bigtime. She is doing so well.

Also, weight gain. I know you were worried.

Last Hospital weight - 6 lb 3.4 oz
Friday doctor's office - 6 lb 6 oz
Saturday night bath - 6 lb 7 oz
Monday doctor's office - 6 lb 11 oz
Wednesday night bath - um, that is tonite, but I bet..... 6 lb 13 oz or MORE!!

She is eating like my fat dog, clamoring for more and really needing the food. She is very needy. She is used to the fabulous care of the NICU nurses and does not even want the blanket underneath her back to be ruffled or else she will let you know.

Tummy time exercises are going really well. She is holding her head up longer and longer and can turn it on sound with coaxing. You know how strong she is, in between meds, she can stand in your lap with reflux pain. Wow.

She gets to smell the wonders of Thanksgiving cooking tomorrow and Thursday.

Be sure to come to the site for the 1st Thanksgiving Day parade. Not really a parade, just a little holiday tribute to our little miracle and everyone who helped make her here now. Daddy will probably lose it.

Weekend Update with Anchorman Daddy

___ Sweet ___.
___ is where the heart is.
First, Second, Third, ___ plate.
There's no place like ___.
___ on the range.

We had to sleep in Wednesday night at the hospital. Now when I say sleep in, I don't mean literally. They had a pull out love seat with a spring mattress. Yes, bent metal. Woohoo!

Anyway, you do this so you can learn your baby before you bring them ___.

When you do bring them ___, you become the NICU, you feed every feed, med every med, and deal with every crisis. Needless to say we have been enjoying our family every hour for the last 96. With no sleep, you can see why I have not given the greatest updates this week. I have had a lot to enjoy and our family is having a ball. She is growing and eating more than ever and gaining!!!

I will have more time for new pictures and all kinds of stuff a little later on. Let us get used to the wonderfulness of ____ and deal with all of our amazing 130 day journey.

(Psst the secret word rhymes with gnome)

Thrush and voracious

Well, we have what they call thrush.

Thrush is the term we use to describe an overgrowth of yeast in a baby's mouth. This yeast, called candida, normally lives within our mouth, intestines, and genital area. It thrives in moist, warm environments. Occasionally this yeast is allowed to overgrow so much it becomes visible as white patches.

We are swabbing her mouth with anti-fungus and she has gotten better. In fact, voracious. She is feeding excellent. She is really taking the bottles down, more than 40 a feed.

Oh yeah, we heard a rumor of something big is going down by how well she is doing........

hhhhmmmmmmmmm

Bottles down...eat more

We can get the bottles in her. In fact when she gets hungry, she eats like a monster. But she feels full very very quickly.

Her alertness has gotten much larger and she fights sleep. She just wants to be awake and playing when we are around.

Eye exam today and we passed the ear exam so she can hear things. Now we have to work on taking more milk with each feeding and keeping it down.

This could be a very busy week. Updates may be sporadic. There is talk of something big.....

Weekend Update With Anchorman Daddy

Drinking milk like a champ!!!

The experiment worked. She is doing very very very very well. Every bottle is going down in incredible fashion. The rice cereal is keeping the spit ups down to a minimum. Everything is going really really well.

Not a lot of updating on that front except that it has been very good.

We took a CPR class today. Weird performing on a baby dummy, but learned. The oxygen on the home trip is looking more and more like a reality. She is only needing so very little. So very little, but when she gets mad is when she has the problem. And on bowel movements.

I would like to implore everyone that next week SERIOUS, we are kicking off the foundation. Please help us next week by telling everyone to donate so that we may start helping babies immediately.

It is going very well. She also is staying awake more and trying to make noises. It is so very cute. I just know that when we finally get her home, it is all going to finally hit me and I will sit holding her in her room and I will just breakdown. I hope not, but WOW.

The Xperiment Continues....

Everything we stopped has went well. Deeper sleep, less spits and vomit and better attitude.

More babylike in that she wakes up hungry.

So it's a smashing success? Yes...........and no.

It has dealt her a new hand to strengthen her to stop the reflux. She burps more.

Weight gain. That will be the new question.

More tomorrow on how the weight is going.....

Lots and Lots and Lots

Oh, the changes we made!!!

No feeding tube. No Aldactazide. No Reglan. Feed on demand. Meaning feed her as much as she wants when she wants.

What?

We can't get her to grow now....why in the world would we do something this insane.

To try it. Honestly, just to see.

It is possible the feeding tube kept her stomach sphincter open too much that she spit up OR it held it closed and she could not burp which in turn made her spit up. Don't know.

So I think that was a good thing to take away. Now can we get her to grow and not spit up on her being hungry? Can we get her to gain weight? All this and much more to come.

Now I told you that I had many questions and possible things to try that I asked the doctors about...and right now, I can not say enough about these doctors. I simply say WOW. These are some of the finest human beings. They listen, they understand, they are amazing. I am sure that I am way too much of a pain to them, but they still tolerate me enough to give some of the idiotic things I bring up a thought. They are absolutely superb. I honestly can't say enough.

Anyway, these are the things we are trying. Now Daddy went up and batted one, now my little girl has to catch it. Hopefully I won't make an out and have to hit again......

Checking Out for assurance

We had an x-ray and an ultrasound on our stomach just to make sure that everything was working correctly. So far, so good. It just seems that she has a stomach that likes 30-35 cc's and a set of numbers that says she needs to take 55 cc's. Maybe she knows her pain limit for her reflux.

She has to keep eating what she is eating, there is no other way to grow. We are just hoping the reflux will fix itself soon.

Oh yeah, her oxygen is down to 1/8 of a liter or less. That is such a small amount. As the reflux goes....so shall the oxygen.

Going to try several things today on the feeding to see if I can get some more in there.

Weekend Update with Anchorman Daddy

Well the results are in ..... we don't like to take shots.

We have had three of the five and it makes us very unhappy babies. We are gassy, mad, in pain, mad, upset, and not sleeping.

BUT we have only two left. We should be back to normal on Mon-Tues.

Bottle feeding has kinda went backwards now, since we are so mad, we really don't like to eat.

YOU HAVE GOT TO GO SEE THE NEW PICTURES AND THE NEW MOVIE!!!

A new artistic movie of her watching her mobile is on the site, and it is really good. It is my favorite movie of her so far!! Check it out.

The oxygen at 1/4 of a liter flow is working really well. That is very low. She has to work a little harder, but we think that she will get stronger and have much better results from it. Hopefully she will pull it out and be done with it before she comes home.

We were once the sickest baby in the unit. With another graduation, we became almost the longest baby in the unit. It is a race to see who gets that trophy. 118 days by the way.

But we are close, the closest we have every been. Barring no problems we will be really close.

So we wait to see when she decides to eat. Once she does that. We are on the way.

One shot...one night of fussiness

Yes, the one shot she got today at 5:00 will give her one night of fussiness and a little fever. She will have a bad 3 days as she gets 6 shots 12 hours apart. Pesky killer diseases!!

So we kinda have to expect a little setback in the feeding....she just won't be a happy baby for awhile.

She is coming along quite well actually. She was just a little tired and fussy and will remain so for 3 days. I will get her to go to sleep on my chest to ensure rest. She likes that.

Well Well Well......

Seems that the doctors have decided to give a big push to the door.

Changes yesterday were HUGE!!!

First, we get there and she is on low-flow oxygen, 1/4 liter, which is what a travel oxygen tank would give.

2nd, she is on all bottle feeds. No more through the tube, which is what a regular baby would do.

3rd, her diet was in fact changed to pure Neo-Sure and breast milk, which is what we would mix at the house.

4th, we are signed up for CPR class on Nov 11th, which we must take to prepare for her arrival.

SO what does that spell??? Possibly a home visit before Thanksgiving, PROVIDED Jonna likes all of these changes. She is doing well with the oxygen, ok on the diet change, BUT the eight bottles do not give her enough sleep. I give her 3-4 days to adjust to this if she can.

Also, we had another PT session yesterday, seems that Jonna has caught up tremendously with head strength and other physical items, we are not far behind in where she should be!!! We have been working with her and massaging her and all of it paid off!! She got good grades on all she was 2-3 weeks behind before!!

Well, seems that we must get ready to get ready. She just may get herself ready by November 19th. Hmmm......closer and closer on this 115th day!!

Landslide...

The nipple experiment went just fine. She attached to that with no problem. She knew what to do and did it very well. She still had to have the feeding put in the tube as the milk was not that vast in her belly, however, that is not what the nurse was looking for. AND with all the moving around and stimulation, I am STUNNED that she did so well. She really did.

AND they moved her up to 6 bottles a day. 5 plus a nipple.

AND they increased her feeds to 55 cc's a day, AND they now will only mix Neosure in the breast milk to prepare her to have that formula at home. So gone are the microlipids and the human milk fortifier.

2 bottles a day away before we work on oxygen. A Baby is being made.

Straight from the Tap

Tomorrow is going to be a historic event. We will try breast feeding for the first time. What everyone is hoping for is that the little light goes on and she realizes that she is ready to eat from a nippled item 8 times a day.

How well this goes depends on a lot of things, will she not like the bottle anymore? Will she not like it from the nipple? Will she not like the fortified taste any longer? Will she not like the regular taste? Will she quit gaining weight? Will she gain more? Will she sleep better?

WE DON'T KNOW....

So much like everything tomorrow, it is all up in the air. Hopefully it will make her make the move....and all will be well. That is our goal. We will see how it goes.

Oh, and to be topical....go vote. I have a little girl in the NICU that never needs to feel insecure in her lifetime. She will not feel it when I can protect her, but I don't want her to feel it anywhere in this country. Right now, if not for our brave, incredible men and women, I would not have a daughter right now. America makes all of this innovation and technology possible to keep alive a 25 week old baby and the soldiers and service men and women make it possible for us as parents to be free enough to have the time with our daughter. I cannot stress enough how valuable that is, and how much it means to me. Also, once you see what 25 week old babies look like, you realize that they are human, and they should survive. So please....vote correctly.

Weekend Update with Anchorman Daddy

The bottles seem to be helping increase the power of her suction. We start with the larger, slower nipple on the bottle and then switch to her regular preemie nipple and down she goes.

3-4 bottles a day. I am sure we will increase to 5 by mid-week if not sooner. All of this bodes well for her to come home before Christmas. I can't wait until she takes nothing but the bottles, the feeding tube removal will be incredible.

Her reflux med Prevacid has helped her sleep more soundly. We gain weight sporadically, no gain one day, 50 the next, very strange. It is all based on sleep. She has a good sleep day, good weight gain.

We are also drinking 50 cc's, 10 more til the 2 ounce goal!!! That is the hospitals goal 2 ounces a feed.