New Bottle Try tomorrow...

We have just purchased 24 bottles designed to not let air into her stomach. We try them tomorrow. Hopefully this patented system helps, even 10% will be phenomonal!

If so, it will be another addition to give to preemie parents through the foundation.

Speaking of the foundation, it is needing just a few more funds to kick off. We have almost everything ready, but we need to get the ability to purchase these things as much as possible.

So soon, I believe will be the announcement. I see it like next week or weekend.

Anyway, she is fine. The prevacid is helping as we have seen her sleep more soundly after a feed. She took her bottle today in 22 minutes with only a minor spit up. It seems like only the physical pain hits her now, not the acid pain. That helps her stay sleeping longer and better.

Find out about the bottles in the Weekend Update. We will see how they do for about 8 feedings.

Wish us luck!!!

Time to home.........before Christmas!

Two Mornings bigtime...

Missed a day of updates here due to the fact that we were up before dawn to get in there to feed her at 8:00 AM. One reason is to keep her guessing on which bottle will be her parents bottle and two to change things up a bit.

But it has taken its toll. Our norm of having only the mornings to do anything switched from having no time to do anything. It really affects your day.

Anyway, we are taking 3 out of 4 bottles now. She is doing much better now that we started Prevacid yesterday.

We were on Zantac...

which is a Histamine H2-receptor antagonists (H2-Blockers)

What they do: Reduce the amount of acid the stomach produces

How they work: The chemical histamine causes certain cells of the stomach to produce acid by attaching to places on the cells called H2 receptor sites. H2-receptor antagonists attach to the H2 receptors and block the histamine from attaching to the receptors. This inhibits the productions of acid.

Side Affects: headache, dizziness, gynecomastia, malaise

Now we are on Prevacid....

which is a Proton Pump Inhibitors (PPIs)

What they do: Reduce the amount of acid the stomach produces

How they work: The cells of the stomach contain pumps that produce acid to aid in digestion. PPIs inhibit the production of acid from these pumps, reducing the amount of acid in the stomach.

Side Affects: Reported to be uncommon but can include allergic reaction, headache, stomach pain, diarrhea.

We are also having a stool issue at this time after being on the med for two days. She will probably get over this today.

A small heat rash on her, but it will probably go away if we keep blankets off her. She is hot natured. Rare for a small girl but her metabolism is awesome, as you can tell by her SLOW weight gain.

The bottle is the next step. The doctors are leaning toward having her come home when she takes all her bottle feeds. Oxygen or no oxygen. I vote for no oxygen, but let's just take any step that we can right now. As maturity goes......it will all be incredible.

Check out the new movies, I am sorry for not having them work, they work now.

Weekend Update with Anchorman Daddy

First off, I have BREAKING NEWS. There are 73 new pictures on the site, and two NEW Movies.

Yes, go to Movies and Pictures and see the newest, latest, greatest, happy pictures of Jonna Lil, the 27(5) week old that has been out of the womb for 104 days now!!

Other BREAKING NEWS, the Foundation is almost completely ready. PLEASE be ready to help spread the word when it is launched.

Other BREAKING NEWS, we have taken completely 5 out of the last 6 bottles. Feeding is becoming a little better.

Other BREAKING NEWS, our oxygen is finally down from 40 to around 30%-28%.

Other BREAKING NEWS, you should see her watch her mobile. She could watch it all day!

Now on to your regularly scheduled program.

The last week has brought us many ups and downs. Mostly ups. Bottles are going much better. But the most impressive stat is happiness. She is showing that she will be one happy baby. AND SHE SHOULD BE! With what she has been through, she has every right to stand up straight and say, I made it and I love it!

How can you not be impressed with the fight, the courage, the will? When you are down, think about that.

When she does not have any reflux, any other gas problems, she is one happy baby. She has attempted to already mimic faces that I make. I stick out my tongue and she will do it too. (Not as well, but she is trying.)

I think as soon as she can get over this reflux, get over the oxygen, she will be very happy. I can not wait for the day with no tubes, monitors of any kind.

Well, stop reading this and go look at the pictures and movies. It will take awhile. Some of them are so precious, you will MELT!!

Woohoo!

One Hundred + Two

102 Days. Still Going.

We have a normal baby back. No more constipation, we changed the formula again from double Neosure to FAT. (Really MicroLipid, but that is just a better word for FAT. It tastes like tasteless FAT) ( I have tasted everything she has taken, everything, medicines, food, everything. The nurses think I am weird, I ask them, is it weird to give it to her...then why is it weird that I want to see what the experience is like...)

We had TWO full BOTTLES in a row, one at 8:00 AM and one at 2:00 PM where we took the whole BOTTLE!!!! This is a first, a record!!

Now we did spit up 12 cc's on the first one, 9 cc's on the second and at the 5 o'clock feed we spit up five. Reflux. That is the ticket. But it does not cause her the pain it used to. She is a VERY VERY happy baby. She fights to be awake to look at her mobile, she fights to be awake to make faces with daddy, she fights to be awake to give momma a lot of laundry. She is loving it. She really is having a good time.

This weekend, I will put up a whole new set of pictures (Why have you not put up any in a while? Well, when we just went there, could not hold her, she did not move, she just slept, those are not really superb pictures. They are of her head sleeping. Period. Now we are getting live action shots, smiles, and we have two MOVIES you have to see!!!

All will be ready for you by Monday morning. Tell all your friends that we got all the new pictures and movies and more on Monday!!

I am almost positive that they will be increasing feeds and volume and amount of bottle soon. Probably tomorrow or Monday. If the positivity keeps up, home is not very very far away.

I see ........prediction....Thanksgiving.

Everyone think Bottle Milk Swallow with a Turkey!!

Double the Neosure...twice the constipation

We are having to deal with some bowel movement issues now that we have added more calories to our breast milk.

She really is having a time getting used to the Neo-Sure. It is making it hard on her to release the hounds so to speak. Which makes for another tough day on the bottle.

Hopefully her system will work through this and be ok. We will see.

Not much else, she is still awake more, was doing well on the bottle. No telling on the next big step.

Right now even the little ones seem to put us off our stride.

Full bottles going down....picky

Today was a good bottle day just as yesterday was. She took the entire bottle today.

AFTER she decided she did not like one bottle. She reacted the way she did when a nurse put the sodium she is on in her bottle. She did not like it at all. Today she did the same thing.

So I asked, can we just use a new formula...maybe ..if you have one mixed up. They did and off she went. All the bottle in about 18 minutes. No problems.

Now what was wrong with the milk you ask. Hmmm. I don't know. It smelled ok. We will never be sure, but I do know that when she don't like it, she don't like it.

Eye exam this morning went great, now she is on the 4 week check up plan. Not bad.

Now if she can just continue to do these bottles, we increased her calories today and increased her feeds to 3 a day instead of 2. The sooner we get this, the sooner we will be getting bigger and we look forward to the next milestone.

Wow. A milestone...she took a whole bottle. The simple things in life are pretty cool huh?

One Kidney Bean short of Chili....

or Weekend Update with Anchorman Daddy!!!!


Today we found out that we have one kidney. Well, we have two, just that the left one isn't really working and is small and is broke.

All that she has that she must make it through and she now has to make it through life with one kidney. Wow.

But the one kidney is kicking butt. It says, I can handle it. I can do this. It is doing it. Everything is fine. They would not have known about the kidney if she wasn't preemie. A lot of people go through life with one kidney and don't even know it.

AND she is physically just 2-3 weeks behind gestational age in physical issues. The doctor today said that this is fantastic. All that she has made it through and she is only 2-3 weeks behind physically is amazing.

AND they do agree that she was 25 weeks mature coming out of the womb than the 27 weeks she was diagnosed.

That gives her a 30% chance of survival in the first month......beat that.

That gives her a 33% chance of having some major issue in her life. Had that ROP, one kidney, CLD. Wow.

She is also not doing bad on the bottle. She is coming back around where she was before the crib.

All in all.......an amazing week. All in all, still here and still on our journey.

Wow.

I really have not a lot to say here. One kidney. CLD. ROP.

Living.

Wow.

Nothing on the nuclear kidneys yet...

and nothing on the Speech with the bottle. The day was too busy for the feeding, and no results from the tests yet.

She had another had day and had to rest. She rested very very well. If she rests 19 grams worth she weighs 5 pounds. Does not look it, does not feel it, but they say it.....

We had the opportunity to redo all the blankets and other items on her bed, so she should rest well tonite with all new blankets and such.

Hopefully we finally get speech to feed her, get some test results and have a nice weekend.

Hopefully.

That would help us out for this week. It has been a busy one.

Kidney Colors and Hunger

Yesterday, we arrived to find out our baby was gone!!!

She apparently was fed up with the noise, found the brake lever on her crib and drove it out of the hospital down the highway, only to be pulled over by a policeman who gave her a ticket for being too small to drive a crib!!

The nurses said no, that wasn't it. She was wheeled down to have a kidney reflux exam. A VCUG. It is where they watch the urine to make sure it doesn't go the wrong way. (More info below.)

How did all this happen? Well, read back in the blog a LONG time ago, and you will remember the time the guy had a hard problem finding the left kidney. Well, they checked it again, and it is a little small. Now they have to figure out why, if it is growing, if it is broke and if it is ok.

That is what we are doing now. We have another test today. It uses diethylenetriaminepentaacetic acid( Technetium DTPA) to radioactivate our blood to scan our kidneys. Cool! She will glow today!! More on the results of all this new worry later. But all indication seem that nothing will be found.

A kidney nuclear medicine scan, or study, is a simple test that involves administering small amounts of radioactive substances, called tracers, into the body and then imaging the kidneys and bladder with a special camera. The images obtained can help in the diagnosis and treatment of certain kidney diseases.
While many tests, such as x rays, ultrasound exams, or computed tomography scans (CT scans), can reveal the structure of the kidneys (its anatomy), the kidney nuclear medicine scan is unique in that it reveals how the kidneys are functioning. This is valuable information in helping a doctor make a diagnosis. Therefore, the kidney nuclear medicine scan is performed primarily to see how well the kidneys are working and, at the same time, they can identify some of the various structures that make up the kidney.

Our kidney scan we had yesterday was pictures of the urine to check to see if it was going backwards....
Normally the kidneys manufacture urine. This urine is transported through two tubes called ureters, toward the bladder, a muscular sac a bit like a thick-walled water balloon. When you urinate, the urine is excreted from the bladder through an exit tube called the urethra. When the bladder muscle contracts, the openings from the ureters into the bladder are normally squeezed shut, forcing the urine to go one-way, out the urethra. In some children, however, the connection where the ureters enter the bladder muscle allows urine to go back up toward the kidneys as well as down through the urethra when the bladder muscle is contracted. This is called vesicoureteral reflux.

There are three problems associated with vesicoureteral reflux. First, when the bladder contracts, causing urine to be forced upwards, the urine puts pressure on the kidneys that they are not built to handle. This can produce scarring of the kidneys. The kidneys and ureters can become dilated from the back-up, leading to poor function. The second problem is that the urine that squirts backwards quickly returns to the bladder. We depend on the bladder to completely expel the urine in order to get rid of the small amounts of bacteria that can enter the bladder (especially in girls, who have short, straight urethras connecting the bladder to the outside world). Effective bladder emptying is a major defense against infection.

Kids with reflux get bladder infections more easily. The third problem is that the urine that goes backward can carry the infection found in the bladder past this line of defense, up to the kidney, resulting in serious infections and possible kidney damage.

Thankfully, you getting through this? The great majority of children with reflux outgrow this over the course of several years. Reflux is divided into grades I, II, III, IV, and V. In children with grades I and II, 80% will resolve spontaneously by school age(we have some time I think, we are like....what a day?). Spontaneous resolution is progressively less common in grades III and IV (only about 10% of grade IV involving sides), and rare in grade V. Progress can be followed by using ultrasounds and x-rays (particularly one called a voiding cystourethrogram, or VCUG(yeah that thing), which takes pictures of the bladder contracting and the urine exiting).

Speech Therapy??

Yes, it sounds weird, but they also do Bottle Therapy. We have not met with them yet, but it could happen today. This update is so late because we have been trying to meet with their schedule.

We are resting better in the crib now, and the bottle feeds are going better now that we took that day off and are only feeding twice a day. She needs more time to rest. That is very apparent.

Our oxygen is pretty high due to this unrest, but it should come down when we grow a little more.

Noise = Bad Bottle = Wonderment

Yesterday, I asked the nurses to put a theory to test. After letting her rest for 24 hours without being bothered by the bottle...I placed the blanket over us for the bottle feeding. I never removed her from her crib, I only sat her up and started feeding.

28 cc's in 20 minutes. Only 14 cc's left in the whole feeding. VERY GOOD!!! Much better than the last three days. Also, as witnessed by several, noise stopped the bottle feed everytime it was loud. A drawer slam caused her eyes to open and stop feeding...after calming her down, she resumed feeding, but she had to get over that.

Now what they might have shown is that she is not totally ready for the noise, for the external stimulus. I brought this up with the doctor, the nurses, everyone. I honestly believe this is currently the issue. Jonna is still very very small, yes, she might be close to five pounds, but she is still very very tiny. She does not have the physical reserves to do this 4 times a day. She just needs to do her thing, then rest about it. She has to, her lungs aren't ready, her body has no fat to feed off of, she is just not physicallly able at this time. This is not a bad thing, it is a small thing.

So what the doctors are doing is that they are bringing in "Speech Therapists", they do bottle tests to see what is causing her to have bad feeds. I believe I already know what they will find, but it is always good to sponge even more knowledge from whomever I can. Learning is the best thing ANYONE can do for anything. The nurses last night also see how tired she was and have already recommended that we bring back the 2 bottle feeds a day. Maybe 3.

I think it will be slower at the beginning. Jonna has only become a baby 5 days ago. And with her journey through all the bad she has been through, she may be behind just a little. Wow, what a shock. Beating the odds on SURVIVAL and she is a little behind on bottle feeding.....stunning.

I personally think her 28 in 20 was very good. It was only 5 from her record. She can do it, and she will soon. She just needs proper rest in between and less wake ups. She also has to be hungry. Any feeding off, and she is not hungry fro the next one.

We see what they say today during the feeds.

Weekend Update with Anchorman Daddy

Noises Noises Noises.

Getting used to the outside world is a little rough on her.

A selling point to her moving to this new real estate was peace, quiet, calm. Everything is better down in special care. We move slowly, we take our time, we encourage peaceful tranquility between all.

And then there is the new contruction zone.

The volume around Special Care has increased recently. More and more babies, more of them in the crying stage, more of them with alarms, and more of them needing critical care.

What? Special care becoming Critical Care? Not exactly, but it does feel like it sometimes. During one bottle feed last week, it was ended by the crying of 3 babies and 2 alarms. Too much for Jonna, she became to startled to continue. She was already too tired from listening to this now that she is in the open and this was just too much. Her best bottle feeding record was done inside the isolette, as I simply held her up inside one day and let her take it at her own pace. With stimulus at a minimum, she took 33cc's in 20 minutes.
Now with sleep low and stimulus at a maximum, she takes not much at all if any.

Yesterday, you could finally see her rest, as we stopped all bottle feeds to give her a chance to get used to the crib. She slept better and needs to sleep better.

A premature baby's nervous system is not yet finished. One or two stimulus can make her face turn red, arms stiffen and giving the stop sign you have seen in a lot of photos. She has definitely got to get used to all of the new noises, and hopefully special care will get quieter. But if it doesn't it will probably set us back some due to her having to adjust to the vast noise. This will take longer and the bottle will have to wait.

I believe she will get used to all the noise, as I said, yesterday she was sleeping very soundly through the noises.

Again, we wait. She will decide when she desires it all again. She will pick when she is ready for the noises. We all wait on her.

Kickin it in the CRIB on Yo NiCU CRiBS

Yo Yo what up and welcome to another exciting edition of Kickin it in the Crib on Yo NiCU CRiBS!! You have gotz to check out my Due Day pictures in the new pictures section!!

Yeah yeah, that's what I'm talking about.....yeah....

Tonite we visit little J'Lil's Crib, that's right J'Lil's Crib DOG!!!!!!! How are you going to beat that?

You ain't!!!

SO let's visit her crib and see what it is all about. Alright, over here we got some grey metal bars.....so cool, and yeah, over here we got some more grey metal bars... in fact the whole crib is surrounded by grey metal bars!! Oh Yeah!!

Now, let's venture into the bedroom, here we see her bed is reclined over 38 degrees!!! We all know what's that for!!! Yeah! And on the bed we see the Pooh blanket and some pink stuff!!

And over in the corner there are all her friends, Pooh and Fireman Pitt and Preemelephant and Pink Ball, they are all there dog!!!

I have my cover over my bars and I am out of my Isolette, says J':Lil! She is definitely kickin it Old Baby Style now!!!

Well that is today's edition of Kickin it in the CRIB on Yo NiCU CRiBS, be sure to check out the Crib Pic in the Pictures section and we will see you next time........

Tried to Lower oxygen

Worked for a little while.....will try again later.

She just can't go away from the one-liter flow. The pressure of one-liter is keeping her saturation good and when it goes to one-half of one, it is bad.

Bottle is going along like it was 15-25 ccs a feeding. BUT we have new residents, our 4th one and he is going to try another drug for the reflux and we are putting something in her nose to suppress the bleeding that the low-humidity oxygen causes.

SO hopefully these two changes will make a difference.

We have also reached the 2000 gram mark. Wow.

Better days ahead

Even with slow growth, more oxyen, slow feeds, I spoke about the next big step.

We had another eye exam today, and that is still going smoothly. The question is, what is the next big step and when?

Don't know either, but if you look at progress in week long segments vs. day segments, we are going in the right direction.

Very well.

Up many grams over the week, about 100 grams per week, and taking bottles still ok, and getting lower on oxygen than before.

These are all true of this week. It is better so far than last week. So in the scheme of things, we are moving in the right direction.

Yes, not bad. I can't wait for every week. Something good has got to be found every week.

When she was real sick you looked at every second, now we look at a week. That in itself is improvement like you could not imagine. Whe you are a parent and counting the seconds, that is a killer. Now it is a lot easier to measure progress in a week span.

The foundation WILL be announced to the frequent visitors of this site FIRST, then we will be released to the press. We have to raise money immediately to begin helping families. PLEASE prepare for the announcement and tell everyone to help as soon as you can.

Thank you all, we are moving forward.

Weekend Update with Anchorman Daddy

For frequent visitors to this site, you notice that sometimes, there is not a lot to say.

Well, it's true, sometimes there is not much to say. The day is very much a waiting game. We can't hold her too much due to the reflux, we get to do one bottle feeding, she sleeps all the rest of the time.

Not much.

Today, I would like to give you the 4 lb news. We have reached four pounds. It is very possible that we will be moved to a crib within two weeks. We are still not a big girl, but it's the biggest we have ever been.

Yes, 83 days to gain 1000 grams. (2lbs, 4 ozs)

That is a LONG time. We are growing very, very slowly. But at least we are still growing. We have to get much, much stronger, take the crib step and be able to handle a little more stimulation with vomiting.

She got daddy really good yesterday, we broke the "don't move too much" rule and passed her from Mom to Dad.......Food up on Dad....yeah, good stuff.

But again, I apologize for the slowness of some of these things, but I really can't tell you much when we do nothing. We are honestly just WAITING to grow to a certain point which will entail her next big step. When that will be and what the big step will be is uncertain.

Will she stop refluxing? Will she stop needing oxygen? Will she like laying on her back? Will she tolerate the crib? These are all big steps and it is impossible to tell when this will happen and which one!!!

Let me try to put it in perspective, she was born at 27 weeks. Now on Monday, it is her due date, she would have been birthed on that day ready. But she had problems after she came out the womb early. Not only did she beat all odds and survive, she had to overcome many, many hits to growing normally. Only recently can she experience the kind of growing and time and food to grow to get to the point that she is supposed to be at on Monday. So we are probably looking at a month behind due to those lungs.

Amazing. But we are making the proper steps in the right direction now. I can't wait to tell you all of the next big step. One way or another it will be good.

Check out all the new pictures. She does not look much different, it is only 1000 grams.

Oh, many nurses say she has a beautiful face. I agree. Not for the biasness, but she really is coming out very round and pretty. Still need to flatten her head some from the back, but that will come in time.

Also, we found a roll of fat on one of her legs. This roll does turn up missing sometimes. Be on the lookout for the missing roll of babyfat, this fat is armed and dangerous, and we really need it!

The foundation is still on the way. We have been pushed back just a tad, but it will be soon.