What a day....Surgery day.....

I know you all have been waiting on the news from the surgery today. I am posting this a little earlier than normal as we are home a little earlier and tired. Need much sleep this evening.

She is very tired. Right now, she is on the ventilator letting it do all the work. Anesthesia is really still kicked in and she is riding the wave. I have not seen her like this in over 3 weeks. It really takes you back.

The surgery went well, no complications of any kind. The laser hit all the right spots and did not cause any other issues, so that is all you can ask there. We now wait about 2 weeks to see if ALL this today works......talk about your worries. Wow.

Be sure to check out surgery pictures, she has some pre-op and two post op where you can see the gel on her swollen eyes. In one pre-op shot, she looks like she is mesmerized with big eyes, when in fact she was under morphine for the first time in 3 weeks. It really sent her away....spacey.

So we came through ok, we have started back on half feeds and so far we have only lost 45 grams of weight. Hopefully the feeds will continue and then she goes back to normal everything tomorrow. I would love to update you that she is back on vapotherm, full feeds and mad at the ventilator tomorrow. That would be great.

Keep up those thoughts.......

Early Edition with Newsman Daddy

The reason for doing this early edition of today's update is to get more of you thinking of our new thought. We really need all the thoughts that we can get today. We were informed that the left eye is not doing as well as we hoped. We are going into surgery tomorrow at 1:00 PM.

That requires us to go off feedings, go back on the ventilator, and go under anesthesia. As many of you know, this is NOT, NO WAY, NO HOW, where we want to be nor what we want to do. However, it is what we have to deal with. A new dip in the plan. After 3 days of weight gain(our first solid weight gain ever) we are now going to have another dip.

We are having laser surgery.
While her heart rate and breathing is monitored during the entire procedure, this is still scary as is any surgery. The laser beam is directed through the pupil to treat the side part of the retina. The procedure is similar to the examination with the addition of laser. The treatment usually takes 30-45 minutes per eye. Afterwards, her eye is going to be red, and the eyelids may be red and a little swollen. Eyedrops are used for about one week. The redness and swelling usually goes away in a few days but may take a few weeks to completely disappear. A follow-up exam is usually performed 2-3 weeks after the laser treatment to see how it went.

Because of her weight and such (read the past ROP blog), she had a 30% chance to get some form of ROP, she then had a 4% chance to require surgery. So we fell into that 4%. Now she has a 7% chance the surgery won't work. We don't need to fall into that. The possibility of a brain bleed now goes up.

What laser does is to destroy the part of the retina that is causing the problem, basically kill the part of the retina that did not have full blood vessels to operate, thereby ceasing it's desire for blood vessels. Hopefully this stops the blood vessels in the good part of the retina from going crazy any longer and calm down and be happy with where they are.

All this could affect her peripheral vision.

So not too much good news today. Tomorrow's news will probably be a success or no success on the surgery and not much more. Sleep will be of short supply and activities will be limited and hospital time will be great. I am hoping that this early update will get everyone thinking of her and hoping for a positive outcome. You all know how we struggled to get off the vent, now to go back on it is hopefully temporary, albeit frustrating.

The doctor's seem to be saying just be cool and we move forward and we never waiver from getting everything ok.

We shall not waiver, early treatment is the BEST and OPTIMAL for the ROP.

Ok, so your thoughts are....

Remember those tiny tiny strings, tell them to be happy with the speedbump. The speedbump is the end of their journey. Love the speedbump. Tell them to rest, they need it, no need to keep trying to get over that speed bump. So tiny tiny strings hugging a speedbump with love.

Thank you all very much.

Weekend Update with Anchorman Daddy

I know, I know, I missed the Friday update. Absolutely nothing different happened and the eyes are still the main things until Monday. So keep those thoughts going. PLEASE keep those tiny tiny strings crossing the speed bumps going like the energizer bunny.

Yesterday she did really well, since we went back on the Zantac, we have had only one spit up, and our residual (the amount lingering in her belly during feeding) is down to nothing. Now let me try to explain a thought I had. For regular visitors here, and I thank you all, there are a TON of you and growing, keep telling your friends this is really good for when the foundation starts!!!!!
Ok, for regular visitors here, you know about two weeks ago we would go into full body grunts, turn our face purple and just use every muscle in some sort of anger. We do that again.

Now I examined what I saw....we were on Zantac two weeks ago, we were taken off, as you know, last Saturday. Our residuals during the period of no Zantac but more spitting up, was very high. Meaning she kept a full belly. Now back on Zantac we have no spitting up, and we have no residuals. SO I asked, could this reddish purple anger fit come from being HUNGRY??

Possibly. We have no idea, so they bumped her feedings up to 9CC's and hour to keep a full belly. The doctor's words exactly, "What can I say, she's a bottomless pit!”

I am stocking up on Cheerios and sliced cheese now.

I am still watching that hunger question, until she gets a little bigger and then we can go on what's called test feeds. This is where they give her 24 CC's in 30-45 minutes instead of three hours. This will give her the sensation of eating, fullness and hopefully a baby belly full sleepy time! She should start to grow on that action. That might be coming soon. Speaking of weight, we broke the 1200-gram barrier for the first time.

Jonna is now 2 lbs 10 ozs. Porker she is!!

Like I said please keep telling everyone about the site, it will be the premiere site for the foundation and be the first place to announce the foundation, it's kickoff dinner and so forth. We are in the legal forming stages, which mean paperwork on top of paperwork, but it is almost complete. We are going to educate this planet on prematurity.

And what a saga it is. I have been reading three books to pick one that the foundation will give away to new parents, and some of the stories I have read about preemies.....tragedy and hopeful. I promise you that while we are not out of the woods yet, we have had a moderate ride compared to some, and like I said, you have no idea until you have been here.

Congratulations on your new baby. Yes, we have one but everyday you wonder do we get to keep one? Think about that as a parent. There were days where we could have taken different directions with one being where we are and one being real real bad. Could I have been up for it? Could I be strong enough for her? Who am I to make decisions for this little little girl?

YES. I have made them, I have studied, I have questioned, and I have learned. I went in to make the best decisions for her because she is unable to speak. I look in her eyes and Jonna guides me on what she wants to do. From the beginning this little girl showed resilience. Some babies just lie there. Now we had some bad days where she wanted to just lie there, but not many. Daddy and mommy would then say ok girl, there is no quitting in this family. So she steps up and comes on with us. I can honestly say that up until this point we have made the decisions, we have watched over her, and we have guided the course to the best outcome at this time. It has all been one hell of a journey. Yet, it is still going on. Today is the beginning of week 8. We are close to 35 weeks.

Most moms are feeling the closeness of their birth now. 35 weeks inside the womb mostly is a viable birth with no complications and only days, if any, in a NICU. We have been at this for 8 weeks. Two months. Her due date was October 4th. 10/4 good buddy. We have at least that long to go. Right now they say November. I don't care what they say; I want her to come home when she is ready, whether it is November or three President's days later.

Wow. This morning has been a weird reflection on the journey. I am sorry that I wrote so much about things that didn't or have not happened yet, but when you read these books, you have to have some retrospect. You have to look at some of the things that some parents go through and go wow.

Please keep your thoughts up. I thank you so much. Get ready for the eye as the test is again tomorrow!!

ROP stays put....

Our eye exam went about as well as it could with the exam showing the exact same as before.

We are breathing lower oxygen and got better all day.

PLEASE PLEASE continue that same thought of tiny tiny strings over a speed bump....

PLEASE, another eye test on Monday!!

It has been a long day, up at 5:00 with no sleep all night.....goodness.

Please continue the thoughts, thank you so very very much.

Reflux, Zantac and the Aqua Pig!

She has gotten a new issue today. She spits up. Now all babies do this you say?!? Yes, but we don't want that in premature babies. The food needs to stay down, when it comes up it hits a nerve causing the heart to "brady"(read the blog all over for info), she hates it, grunts and "DeSat's" (read the blog all over for info). So this is bad. We came off Zantac this Saturday and we are hoping that we get put back on it. She had no issues until then so hopefully this will fix the problem.

We leave for the hospital in like 8 minutes....not really, but we have to be there at 6:45 AM for the eye appointment. I hope everyone has been doing their thoughts, we find out tomorrow morning.

We have also now put in her isolette a CD player and some speakers. It has the Superman theme song on it and a lot of other classical lullaby's. (Why Superman theme song? It was on a Courage CD as Song number 1 along with other songs for Courage and Strength, Mommy played that CD when we found we were high risk on every trip to the doctor and back home. Since it was song 1, it got played the most. We even played it for her in the 6 days we were in the hospital when we knew we had to give birth. It has become her theme song. )

Also on the CD, is Daddy reading A.A. Milne's Original Pooh stories Winnie the Pooh and Some Bees and Mommy readin Piglet Entirely Surrounded by Water. So she now has us reading to her all day. We will make more CD's for her to get a variety, but we are hoping Superman does its job of keeping her Super in all aspects.

Off to sleep....have to get up MEGA early......got to go check our retinas.

3 Liters of pressure on oxygen

We moved down a lot after we got some blood. We were a little low on blood, so we got some and BOY did that help oxygenate. We went from 6 liters of pressure to 3 and we have remained there pretty good. If we go down 1 more, we can go to regular oxygen in the nose. Maybe.

We weigh 1161 grams, 2 lb 9 ozs.

She stayed calm all day and relaxed. We check our eyes again on Thursday.

Remember our thoughts until Thursday and beyond....

tiny tiny strings crossing a speedbump

tiny tiny strings crossing a speedbump
tiny tiny strings crossing a speedbump
tiny tiny strings crossing a speedbump
tiny tiny strings crossing a speedbump
tiny tiny strings crossing a speedbump
tiny tiny strings crossing a speedbump
balloons in Lard
tiny tiny strings crossing a speedbump
tiny tiny strings crossing a speedbump
tiny tiny strings crossing a speedbump
tiny tiny strings crossing a speedbump
tiny tiny strings crossing a speedbump
tiny tiny strings crossing a speedbump
balloons in lard

Retinopathy of Prematurity

Today's lesson is Daddy's fears. It is about Retinopathy of Prematurity. On the 2nd day, Daddy told doctor that THIS was his MAIN concern.

Alas, here we are. Yes, she is in the 80% percentile to get the disease. She is under 1000 grams at birth, less than 28 weeks, and blond haired and blue-eyed girl. She was destined to get some form of it, right now we are Stage 2 Zone 2. From this point on we can go either way. She can fix it herself, or we need to have eye surgery to make sure she can see.

So your thoughts over the next two days is tiny, tiny strings crossing a speedbump. Please get this thought in your head. Your pink lard has done well, we now weigh the most EVER at 1191 grams, 2lb 7 oz.

WOW, big girl got a milk gut on her. You GROW girl!!! Woohoo.

Now I need you to focus, please focus all your energy on the tiny strings crossing a speedbump. We can do this. We must do this. Daddy has had a VERY emotional day. His fears has reared his ugly head, and I will beat them back!! We will beat them back. We must! For those of you wondering what ROP is, of course, you knew, I would give my lesson now.

Retinopathy of Prematurity (ROP), originally called retrolental fibroplasia, was the leading cause of blindness in children in the 1940s and 1950s. It was first described in the medical literature in 1942 by Terry. In 1952, Campbell theorized that the condition was caused by the use of oxygen therapy to treat the immature lungs in premature infants. Today, we realize that oxygen is not the only factor in developing ROP. High levels of oxygen have been associated with ROP, but lower levels of oxygen may lead to more respiratory complications and death in premature infants. Better oxygen level monitoring has led to better control of the oxygen given to premature infants. Today, however, there is an increase in ROP due to the fact that neonatal care advances mean more low weight premature infants are surviving.

Statistics
ROP occurs in over 16% of all premature births. In babies weighing less than 1,700 grams at birth, over 50% will develop ROP. In the United States, over 2,100 children annually experience the complications of ROP. Of those estimates of 500 to 1,200 cases of new blindness or severe complications are reported. Studies have found that about 30% of infants with advanced ROP have 20/200 or less in their better eye.

Risk Factors
There are a number of risk factors that are associated with ROP. These include:
Infants born under 32 weeks gestation
High levels of supplemental oxygen
Weight less than1500 grams (the lower the birth rate, the higher the incidence)
Concurrent illnesses
Anemia
High carbon dioxide levels
Seizures
Bradycardia (low heart rate)
Apnea
Mechanical ventilation
Blood transfusions
Intraventicular hemorrhage (bleeding into the brain)
Multiple prenatal maternal factors including heavy smoking, diabetes, and preeclampsia

The Cause
From 16 weeks to birth, retinal blood vessels grow out from the optic nerve to reach the peripheral retina. The last twelve weeks of a normal 40 week gestation are crucial in the development of fetal eyes. In premature infants, the normal growth of blood vessels stops. It is theorized that the area without adequate blood supply emits a chemical trigger to stimulate growth of the abnormal vessels. These vessels lead to a formation of a ring of scare tissue attached to both the retina and the vitreous gel that fills the center of our eyes. As the scar contracts, it may pull on the retina creating a retinal detachment. Regardless of the gestation age at birth, ROP seems to occur at about 37 to 40 weeks.

Doctors classify ROP by anatomical zones, clock dial like location within the eye and stages of severity. Zone 1 is the center of the retina while zone 3 is the far peripheral retina. In 1984, an international classification system was developed. Stage 1 is the mildest form of ROP while Stage 5 is the most severe indicating total retinal detachment. Doctors may also use the terms “popcorn” referring to a scarring that is regressing following abnormal vessel growth. The term, “hot dog”, may refer to a red hot ridge of increasing abnormal vessel growth.

Vision Complications of ROP
The retina may become stretched and pulled by the contraction of the scars in the eye. This may physically pull the macula, the most sensitive part of the retina, causing abnormal vision. It may also cause folds in the retina and lead to retinal detachment.
The retina is the light sensitivity “film-like” portion of the eye. A retinal detachment occurs when this delicate tissue is dislodged from the internal walls of the eye. Retinal detachment (RD) is common in patients with ROP. In many cases, it leads to profound vision loss. Early detection and treatment is crucial. In stage 5, the most severe form of ROP, retinal detachment surgery may not be attempted due to the poor prognosis versus risk of operating on a premature infant.
Strabismus is another complication and it is the crossing in or turning out of an eye. This may occur from the loss of vision in one eye or be related to the large refractive differences between the eyes. This difference is called an anisometropia or antimetropia. For example, one eye may be 1 unit of myopia (nearsightedness) while the other eye is six units of nearsightedness.
Due to the vision loss or the strabismus, there is a loss of depth perception. Amblyopia is another condition found in ROP patients. It is a loss of vision in one eye, because the brain does not use that eye to see. Ambylopia can occur from either the strabismus or the large difference in refractive error between the two eyes.
Both cataract and corneal problems can develop. Severe damage may lead to Phthisis bulbi, a shrinking of the severely damaged eyes. Glaucoma may develop either early or as a later in life complication of ROP. Additionally, ROP patients may have high amounts of nearsightedness called myopia.
In patients who experience significant vision loss, nystagmus, a rapid fluttering of the eyes, may occur. Nystagmus is common in all patients whose vision loss occurs at an early age.

Complications Later in Life
Up to 10% of all premature infants may develop glaucoma later in life. Sudden angle closure glaucoma has been found to occur in the 2nd or 3rd decade of life. Additionally, 20% of those without ROP will still develop strabismus (the crossing or turning out of the eyes) and significant refractive problems requiring prescription eyeglasses. Additionally, approximately 3% of ROP patients will develop retinal detachments later on in life. Patient’s eyes must be examined regularly throughout their life.

Prevention
To prevent ROP, good prenatal care is essential. This care lessens the risk of delivering premature infants. Next, careful monitoring of oxygen therapy and other risk factors are crucial to preventing ROP. In the hospital, monitoring by a retinal specialist skilled in ROP is essential in lessening the advancement of ROP.

Treatment
Cryotherapy or the freezing of the retinal tissue has been used since the 1970s to treat ROP. Today, laser therapy has been shown to be as effective as cryotherapy, but with less systemic side effects. Both therapies work by destroying a small part of the retina, thus reducing the need for oxygen and abnormal blood vessel growth. It may also thin the retina allowing more oxygen to diffuse into the retina.
If a detachment of the retina occurs, scleral buckling may be required. It is a procedure that places a band around the globe of the eye. This brings the retina back into contact with the inner layers of the eye. A vitrectomy is used to remove scar tissue from within the eye in the more severe cases of ROP. During the vitrectomy, the lens of the eye is usually removed as well.
Due to the difficulty of performing these surgeries on the small eyes of premature infants, these surgeries are usually performed only by a small number of ophthalmologists with extensive experience in ROP. We have Doctor White, a very nice lady who does this all day. We have asked her to be Jonna's eye doctor forever, or until 18. She said yes, and understands my concerns. She will do her best, I really feel like she will.

Ok you know your thoughts of the day....get to thinking!!!!!!!

Sunday. She wears CLOTHES!

Yes, look at the pictures and you can see her wearing a Preemie garment. Check out the size of the garment then look at how big it is on her. Wow. She is still small.

Mommy held her for more than an hour today. She slept very good. So very good in fact, that she had a "brady". The A's and B's of prematurity is apnea and bradycardia.

What is bradycardia?
Bradycardia is a slowing of the heart rate, usually to less than 80 beats per minute for a premature baby. Bradycardia often follows apnea or periods of very shallow breathing. Sometimes it is due to a reflex, especially with the placing of a feeding tube or when the baby is trying to have a stool. She does that quite well.

You have got to see how big the socks look on her. She looks like clown feet.

Not much difference on oxygen but we may go down tomorrow on pressure. That would be great. She is sleeping through the night and resting comfortably when bundled.

We need the same thoughts people.....balloons surrounded by pink lard.

Weekend Update with Anchorman Daddy

Ok, Friday and Saturday went really well. She is down on her oxygen and may can go down on her pressure on Sunday. Lots of medications are not NO longer needed. Morphine, Zantac and her synthetic thyroid medicine are all done.

She is only on caffiene and her lung treatments. The caffiene is to make sure their is no moments of apnea(that is where she will stop breathing for longer than 20 seconds). She only has a slight crackle in the lungs so the treatments are working.

She has been bundled tightly the last 3 days and we are 1111 grams of weight. 2lb 6 oz.

It is a thrill to watch her growing everyday, and not in weight or height, I mean in mind.

She can follow movement somewhat, she has a longer alert period, she enjoys physical contact, she smiles more. It is amazing everyday by watching the differences in her abilities.

She has the ability to turn herself over. She enjoys sucking her fingers and sucking a pacifier. She is learning to handle talking and noise. She can turn her head and she does VERY well at pulling her feeding tube out.

I don't think you understand how incredible it is to WATCH what should be happening inside the womb. Babies do so much in that womb, and now due to 3 dimensional ultrasounds, we are learning that they practice stretching, sucking thumbs, working their lips, and doing all kinds of things to prepare for what happens next. Now I get to see some of that. She will purse her lips, work her tongue, and after being unbundled....she will SSSSTTTTRRRREEEEETTTTTCCCCHHHH. It is the cutest things to watch her push all of her 14 inches as far as she can to get a full on stretch. Amazing. Arms up, legs down, yawning. Lots of yawning. So cute and amazing.

Tomorrow I will be creating her CD to have in the isolette. It will have music on it and me telling stories in between. I will make new cd's every week and get them to keep her soothed with playing it. Yes, it will include her favorite in utero song "Superman"!

I can't wait to update you on how she interacts with the music and stories. That is going to be interesting to watch. There are many stories of music and the womb, I want to re-create that. We also will be massaging her as it has been shown to increase her growth by 50% and moving her discharge day up by an average of 8 days. So we will see how that goes. We are using breaking science and using every bit of it to give her the best chance that she can have.

Here is a study on babies remembering the music for at least a year.

http://abcnews.go.com/sections/living/DailyNews/babies_music_010711.html

It all helps make good neurological synapses and that helps the cognitive ability.

Good day today....down on oxygen

We went down pretty well on oxygen today. Our first positive step in 4 days. Very good. That means she is improving quite nicely and MAY not go back on the ventilator. (PLEASE!) AND she is now regulating her body temperature a little bit better than before, so she may be full cribbing sooner than expected. That means in a full crib, no isolette. But that probably won't happen until she can handle full feeds, and that probably won't happen for 2-3 more weeks and that is just to TRY it. Wow, see how amazing all this is.

Mommy held her for a long time today. More skin on skin marsupial style. She just laid there sleeping as peacefully as you could imagine.

She really likes Daddy's weird voices too! You have to check out the new movie of her SMILING. Yes, smiling.

Yes, I know, she really does not understand the concept of smiling, BUT, I swear she was smiling. Check the video out....it really is something. You will also see her eyes dart about trying to look at every sound. When an alarm goes off somewhere in the room, she looks. When Daddy speaks she looks, mommy speaks she looks, then she looks everywhere...it is really strange to see the eyes do all the moving, thinking that she should be looking at one thing. However, preemies don't have all that coordinated yet, in fact, some full term newborns have a coordination problem. It is completely normal. But still weird looking I know...just look at that smile.

It happens more than once to make it a coincidence. She smiles then she loses coordination, get confused, and then works the mouth. It is so cute!!!

She is starting to have fun when we have her holding her. This is really a great thing now. All we need is her to grow and gain weight.

Everyone, we are not out of the woods yet, but it is really getting encouraging to see the emotions on her face. It is getting very nice. Thank you all for one wonderful day.

Looking more Bright Eyed

Everyday it seems like she has a little more "awake" and learning time before she just gets too tired and falls asleep. Today she had the same day as yesterday. There was so much going on around her today, a surgery next to her, a move in and move out across from her, but she stayed the same on oxygen.

She was even held by Grandma and Grandpa. She stayed in their arms sleeping very peacefully. They held their first grandchild for the first time. Today was very special to all of us. It was their first time EVER holding a grandchild. They said the same thing as I in that she does not weigh very much.

Now we just have to get the other set of Grandparents to hold her and she will be completed in the holding rounds. This is not their first grandchild, but it is the first from her baby of the brood, so it will be special just the same.

I love seeing the looks on everyone's face as they held her for the first time. My mother cried, my father did not want to hold her. But they both did and loved it. When the other grandparents see how little she is, everyone will then know that she is very, very small.

Oxygen is the same, we did not gain any weight, and we are still off the ventilator. So basically this day was a floater....floating until the next change.

I pray it will be positive.

Keep those thoughts up!!

Small Gain, and another hold

We held her for the third time today in an experiment to see if she really does calm down with our presence. She does a little. this is going to be an ongoing experiment where we will try to help hold her on sort of bad days, and of course good days but not REAL bad days.

She was having a sort of bad moment and so I asked the doctor could we try it. We are not stupid parents who MUST hold baby no matter what...we know to watch her and make sure it is something that she wants.

As I held her she fell asleep, so then we would get the skin to skin contact on mommy's chest called "kangaroo". That went very well as she laid on mommy and slept for nearly an hour. Her oxygen and pressure are up a little from yesterday, however, we might have staved off another increase by getting her in a deep sleep for over an hour. We hope so.

The history of kangaroo is below. I for one, only think that this care is beneficial to create a bond. If an infant, such as we were, was in such bad shape, a stimulus such as even holding her, cannot be beneficial in all cases. I do not believe in holding an infant on critical life support. That is just stupid.

But she is a little more stable. So we are testing holding her for calming reasons, as we have seen her calm down when we hold and/or talk to her. Like yesterday, I held her head and held in her pacifier and she laid there eyes open content for about an hour.

So we held her and it went well. She went into a deep sleep for quite some time, at least for an hour or so. Then needing a diaper change.....boy howdy a big time present, she got fussy. We have watched that she does not like a dirty behunkus.

So maybe later on, we will try to hold her again when she gets fussy, but we are not going to push it. She lost 3 grams of weight from all the excitement. That makes us mad. So holding will take a backseat in only the best of cases until we get some age and meat on our bones.

Remember to visualize that balloons surrounded by pink lard.

I myself, did not understand the term kangaroo. They have fur, why do you call skin to skin contact "kangaroo". Well it seems that a kangaroo is born not fully developed. So it must stay close to mother until it is mature. Welcome to the exact definition of a "preemie". That is where the term comes from.

Now I shall describe it further for you.

They call it "kangaroo care". Kangaroo care is a way of holding a premature baby so that there is skin-to-skin contact. The baby, wearing only a diaper, is held upright against the parent’s bare chest.
Where did it start?
According to Katie Brietbach, R.N.C., N.C., of the Pediatric Nursing Division at the University of Iowa Hospitals & Clinics, kangaroo care began in South America, where premature babies were sent home snuggled between their mothers’ breasts, being fed only breastmilk. This was done because of high infection rates in the dirty nasty hospitals. Needless to say, those that were sent home did not die as much. Thus bred a reason to believe that it was the best thing for a baby when in fact, the hospitals were gross. The method spread to countries in Europe and then to the United States, where an estimated 200 neonatal intensive-care units practice kangaroo care, up from about 70 in the early 1990s.

Why is it used?Kangaroo care is often used with premature babies because the close contact with the parent can stabilize the baby’s heartbeat, temperature and breathing. Premature babies have a hard time coordinating their breathing and heart rates (often called coupling). As the baby’s heart rate increases, there could be an increase of apnea, which is a temporary loss of breathing. Studies have shown and many medical professionals agree that kangaroo care can help the baby better coordinate its breathing and heart rate. However, some doctors believe premature babies are too fragile to be held, and that close contact with parents can increase the risk of infection.

SLOWLY gaining....

As of right now, we have a 2 lb 6 oz girl. 1087 grams.

Today was not the best day in terms of oxygen use, we are up in the 40's and 50's percentile.

Not good, but not bad. She is still feeding, and finally gaining some weight. She loves her daddy's touch, calming down almost immediately when I held her hand. I had to do that for almost an hour to get in the most sleep for the day.

The lung treatment is finished and we hope that it holds. We will know more in the next 48 hours if we can stay off the vent.

The nurses say that we could if we get no infection. That is what we have to make sure that we don't have, infection. Everyone continue on the lard and/or Crisco and now add a vision of penicillin. It's pink. So think of balloons surrounded by pink lard. That is your new vision.

Think people think. We have over 800 hits on this site a day, we can spread the word and get more thinkers. PLEASE send this site to everyone you know.

That way once we announce the foundation and all it is going to do, we will have lots and lots of people who can help spread the word.

Thank you.

Weekend Update with Anchorman Daddy

So many of you helped with the fundraiser Saturday, and my blubbering speech did not do it justice. So thank you from the bottom of my heart. I swear the entire family unit thanks you.

Our fundraiser was a great success, we raised money and will now begin in earnest to fund our new foundation. Some of you know about it, and by next week, you will know even more. In fact, we should start some meetings with the hospital and other people very soon.

Saturday and today(Sunday) was a great day. We have been continuously going down on our oxygen requirements. That is wonderful. We have been stable all weekend. It is a strange feeling to call and nothing bad happen, but nothing BAD has happened. (Please find solid wood and knock with knuckles right now as you read this). We haven't moved a ton but we have moved, our pressure is less and oxygen is down.

So all in all, you have a very good read.

I know all of you daily readers missed yesterday, but it was a FULL day. So many people have helped, and if you would like to help, we have new "Make a Donation" buttons on the website.

But now we embark on our new challenge. We have not gained weight in 4 days. We have slowed the loss, but we are really skinny right now. We are not thinking hard enough on Lard.

If you don't know what lard is, just think of Crisco(All rights reserverd. Trademarks are owned by their respective companies).

We are 50% more calories than breast milk alone. So we wait one more day to see what happens. We just can't flood her with milk as we have to keep the fluid down so that it does not go into the lungs again.

We will know more tomorrow. Stay Tuned....hopefully we will gain tonite.

And the foundation is on the way. Prepare to tell the world.

Real mad unless held, yes, HELD!!

We were able to hold her today. Our second time ever. This time, she loved it. She has been very, VERY mad as you see since we came off the ventilator. The nurses have been trying to do everything in their power to keep her calm. We arrived today and mom had to go pump her milk. I watched her get mad and mad and madder. I was asking the doctor, what is happening? They all said it was normal, she did not like the transfer of vent to nose tube and might have some gas. They said she will fight this way and it is not a big deal, eventually she will calm down and get used to it. THEN they said she seemed to be calm when Daddy touched her, so "Why don't you hold her and see how it goes....?".

Right woman, last time we held her she went on the oscillator! No Way! She is only off the vent 24 hours and the vent is still at bedside, I don't know about this.

"Come on"....the nurse bantered back.

I thought to myself, alright daddy, you can try this and if it is not conducive, we will immediately place her back in her Iso-Lette. Two minutes tops.

I put on the gown, very nice petite gown with frilly pink ....no wait, this was a hospital gown, what am I talking about. Ok, so the hospital gown is on, I sit in the chair waiting for the nurse to prepare all the tubes, all the wires and all the other stuff, wrapping her for warmth.

If she knew how much sweating was going on, she would not have worried about Jonna getting cold. So I sit.

Here she comes, screaming as loud as she can scream(which you know how loud that is) face as red as a beet. My first thought is, "this won't last long, we will be done before mom returns".

I hold my daughter for only the 2nd time. Her size will amaze you. She is bundled in a blanket and adds NOTHING to the weight of holding a towel in your bathroom. She lays on my chest, then.......

the screaming stops. She lays quietly. Happy even. Her oxygen stats slowly rise from 74% to 86 then to 90 then to 93, 95, 98, 100. Perfectly content and breathing fine.

She enters a restful, peaceful, gorgeous sleep.

"Man, I wish mom would hurry up and see this, I am holding her and she is okay!"

Hey, baby....hey Jonna. How are you doing? You like Daddy holding you, huh? You are ok now.

All I had held back all I got.

She was happy and content, and for everyone out there reading this knows, everyone was happy and content. Nurses came by, "Wow, she really likes that!" "Hey, I can turn her oxygen down." "Nice...she likes being held".

"Jonna girl, you have to stay good for a little longer so that your mom can hold you."

Content.

People I do not have to tell you how it felt to have her content. No crying, just sleep.

She stayed in my arms for 45 minutes. Mom got to hold her next. She was content even further. We actually had a moment with her in our arms.

After we placed her back in the ISO-lette to clear up a massive in the diaper, she slept even longer, happy to finally know that Mommy and Daddy do exist. They aren't just these weird voices and smells. They look blurry when I try to look at them but I probably should not look at Daddy, I heard he was ugly.

Anyway, today we all met each other, exchanged business cards, said we would do lunch and vowed never to forget to call....

aaah...you know the rest.

Tomorrow is her first fund raiser. She has been upped on calories even further, her mad movements are not allowing her to gain weight. Tall lanky thing, I swear she is going to be one of those "Girls who can just eat anything and not get fat...."

So, everyone that has been thinking of those balloons in lard. DON'T STOP. She is not out of the woods yet. We have some balloons, but no lard. This low-fat craze has really warped your imagination of what real FAT looks like. It is not mayonnaise, I need LARD. Full fat, never rot, cook anything LARD.

Thank you now.

VapoTherm up the nose. Yes, no Ventilator-AGAIN

Ok, sorry for the delay, but it is now a fact, we are on the VapoTherm 2000i.
It is a little better than a CPAP, in that it can deliver a little more pressure. As for the first hours, she is doing real well. Now we just have to keep her strong so that she can stay on it.

She is really mad today. Crying, screaming, not sleeping. They are hoping that she just has to get used to air flowing in her nose. She sorta sucked on a pacifier today, but not for long. I watched her most of the day as she had a tendency to pull the tube out her nose.

But all in all, another very special day, now everyone PLEASE hope that she can stay that way. They have not moved the vent away from her bed. They probably won't for 2 weeks. Let us hope we don't need it.

Also, you should check out the home page if you come straight here......you have audio of her first cry! Yes, HER FIRST CRY!!!!!!!!

Let us all hope that she is happy with the VapoTherm.

Details below of the VapoTherm.

http://www.vtherm.com/products/2000i.asp

The Vapotherm 2000i is a respiratory therapy device that allows high flows of breathing gases to be delivered by a narrow tube such as a nasal cannula or trans-tracheal cannula, using patented membrane technology to warm and saturate the gas stream. The Vapotherm™ system is defined by its ability to deliver breathing gases ideally conditioned (i.e. molecular water vapor, sterile, saturated but without condensation) at high flows at or above body temperature. This concurrence of attributes --flow, humidity and warmth-- permits treatment of a broad range of indications.
High flow as indicated for numerous chronic lung diseases, either to improve gas exchange or to reduce work of breathing. Vapotherm's ability to efficiently moisturize and warm the flow expands options to include nasal and tracheal delivery of gas flow rates of up to 40 L/min (nasal) and 20 L/min (tracheal) without discomfort or damage to airway epithelia.
High humidity and warmth as indicated in upper airway inflammatory conditions (laryngitis, croup, sinusitis, rhinitis), reflex induced bronchoconstriction (asthma, exercise induced stress), and in respiratory hygiene (cystic fibrosis, tracheostomy care, wound healing). The high flows and elevated dew point allow ample delivery of moisture and warmth in these cases.
Warmth delivered directly to the patient's core as indicated in hypothermia (accidental or post-operative). Vapotherm's ability to deliver high flows of breathing gases above body temperature allows the heat of condensation to be transferred directly to the patient's core, safely and non-invasively.

A good day on the vent

The treatment we started yesterday has gone really good. She has weaned down on the vent settings a lot. She is breathing many more times than the vent now. She is handling lower oxygen, like 50% or less. She is moving so MUCH!!!

In fact, when I upload the new movie on Thursday, you have got to go see it. It is so funny.

Anyway, I have lots to type but we are going to go make a blanket for her. So I will type new stuff in the morning. Tomorrow will be a double or triple log day I do believe. Got to get ready so this one is short. Be ready, I will keep you updated.

Another single event day

The only thing that improved today is that she has to take 7 more breaths a minute than yesterday. The vent was turned down to 23 from 30 today. That is it. Nothing more nothing less.

We started another treatment for the lungs today, and we hope she responds well.

Realize this ladies and gentlemen. What we have here is a fact that Jonna would not be here today if not for mechanical ventilation. But we know that the vent is hurting the lungs, so it is like my friendly enemy. I like it for now, but I want it gone when I can. What we fail to realize is that we would not have Jonna right now if not for the vent. After 1 month old tomorrow, she is still not breathing on her own. That is a problem to me and we all need to pray for those lungs REALLY REALLY bad. We do not have a living, BREATHING Jonna until we can get off the vent. Once we do this, she can take her time and do the rest herself, but she has to get to the breathing part and do it soon, long term on the vent causes way too many problems. Too many to discuss here, and some of them I don't even want to talk about.

Redesigned the website a little more, now the donation can be any amount you want and the picture of the day is brighter and all pictures are easier to find. Hope you like the small changes, I will do more as soon as I have the time.

Our first fund raiser is this Saturday. We are selling BBQ plates for 5. 00 and having an auction and some raffles. So please come join us, it will be our first time in public in awhile, and we hope to see everyone.

Fortified Milk Now

Absolutely not much happening today but fortifying our milk. Now she is at full feeds and getting fortification with multiple vitamins.

She is still on the ventilator. She is still very tired. All her antibiotics have been stopped and all her IV fluids have been stopped. She is taking in only fortified milk. Period. Growth is now the most important item.

Oh yeah, we need more balloons in those thoughts. Many, many more. She had her first eye exam today, she is okay at this juncture but at a risk for retinopathy of prematurity.

Here is all that jargon in one convenient hard to swallow pill. This was and is my biggest fear from birth. I did not sleep last night and I was there this morning at 7.00 AM preparing for the eye exam. The foundation I have begun is going to teach all of this, you will hear more on this foundation by Friday!

Statistics
ROP occurs in over 16% of all premature births. In babies weighing less than 1,700 grams at birth, over 50% will develop ROP. In the United States, over 2,100 children annually experience the complications of ROP. Of those estimates of 500 to 1,200 cases of new blindness or severe complications are reported. Studies have found that about 30% of infants with advanced ROP have 20/200 or less in their better eye.

Risk Factors
There are a number of risk factors that are associated with ROP. These include:
Infants born under 32 weeks gestation
High levels of supplemental oxygen
Weight less than1500 grams (the lower the birth rate, the higher the incidence)
Concurrent illnesses
Anemia
High carbon dioxide levels
Seizures
Bradycardia (low heart rate)
Apnea
Mechanical ventilation
Blood transfusions
Intraventicular hemorrhage (bleeding into the brain)
Multiple prenatal maternal factors including heavy smoking, diabetes, and preeclampsia

The Cause
From 16 weeks to birth, retinal blood vessels grow out from the optic nerve to reach the peripheral retina. The last twelve weeks of a normal 40 week gestation are crucial in the development of fetal eyes. In premature infants, the normal growth of blood vessels stops. It is theorized that the area without adequate blood supply emits a chemical trigger to stimulate growth of the abnormal vessels. These vessels lead to a formation of a ring of scare tissue attached to both the retina and the vitreous gel that fills the center of our eyes. As the scar contracts, it may pull on the retinal creating a retinal detachment. Regardless of the gestation age at birth, ROP seems to occur at about 37 to 40 weeks.
Our understanding of ROP is changing. Traditionally the view was that high oxygen exposure was the cause. While it is certainly one of the major factors, studies now show that it is not just exposure to oxygen or other toxic agents after birth, but may also relate to actions that occur to the fetus prior to birth. Both chronic hypoxia (lack of oxygen) and intrauterine growth retardation may relate to ROP development. As many as one third of ROP cases may be the result of prenatal conditions. Light exposure has been suggested as another factor. To date, scientific studies have not confirmed light as a cause.

Detection
High risk premature infants are usually monitored by a retinal specialist or pediatric ophthalmologist during their stay in a neonatal care unit. Guidelines for screening will vary within different hospitals, but recommendations may typically include:

Infants born at 23-24 weeks should be examined within three to four weeks.

Infants born at or beyond 25 to 28 weeks should be examined by the fourth to fifth week.

Infants born after 29 weeks should be examined prior to discharge from the hospital.

All premature children are at a higher risk for other eye and vision complications. Thus, eye examinations every six months are recommended for all infants born under 32 weeks or that weigh less than 1500 grams. Twenty percent of these premature infants without ROP will still develop a crossing or turning out of the eyes and significant refractive problems requiring prescription eyeglasses.

Back to Low Oxygen

Well, the lungs have come back some. We are now breathing a little better. 5 bad days now, 1 good night. So keep thinking of those balloons. And we weigh 1190 grams (2.4 lbs), but some of that is swelling.

Let us hope that we have another good night tonight. If we can continue on this path, we could be back to where we were on last Tuesday when we got very low on the ventilator.

Our feeds(milk) have now been fortified to help with more vitamins and minerals. Our blood sugar was a little low, but it is now fine.

Keep thinking of those balloons and the lard.

Lungs....oh Lungs....

Hello, in the last post, I asked everyone to think about a billion, jillion balloons in lard. You got the lard part right. She has swelling now, but it's not real fat, but it looks like fat. She gained 40 grams (2 ounces) since we talked last. That is good, but those lungs. Oh those lungs.

She simply needs to get those lungs back. She has increased to 6 cc's on her milk, but is not breathing as well as she was last week. Everyone take a deep breath, imagine trying to teach her that, deep breaths.

I really appreciate everyone helping. She has not made one bit of progress since Thursday. She really needs to start breathing. She used to do it, but now she is lazy. We have been there more than ever in the last week and we have tried to help her breathe breathe breathe.

So let' s all get that breath in and send a mind message to her to get started!!!

Stabilized but not out of the vent yet

Today, we were there all day. We got there at 7:00 AM so that we could be there for support as Jonna is having a bad couple of days, and since I did not sleep last night, no reason not to go ahead on up there. So I am working on 48 hours no sleep.

She still had some lungs alveoli issues, but is improving S....L....O.....W......L.....Y. It is going to take a few days to even get back to where we were when we were coasting.

We sat there all day watching her have issues. She is having that "slap and gas" (CPT and albuterol) and it is loosening up a lot of gunk. One time she got really bad and required bag resuscitation. It is par for the course, she just has to grow and grow and stop moving.

She is up to 5 cc's on the milk and that is good, maybe she will be getting fat for us soon. Everyone think nice "balloon" thoughts to get those lungs working. That is all we need is lungs. Imagine millions and millions of tiny balloons sucking in air. If we can get her feel all this, maybe these sacs can open up and start working. Oh yeah, also think of fat. She needs fat on her. So think of balloons in lard. Lots of tiny balloons in lots of lard. Yeah.

Oh yeah, it seems that some people don't know that we add pictures EVERYDAY!! I will now start putting the pictures of the day on a picture of the day page and then they will be added permanently to the week pages. But until then, go check out week four, it has the latest pictures added EVERYDAY!

Think of fat, look for fat in the pictures......

Slapping the lungs for being bad

Today was not the best of days. Remember back when we weren't on the vent and everything was good. Yeah, that was nice.

Now we are on the vent, and needing more of the vent than before last week. We are also experiencing low blood pressure again. But with all that, our feeds went up another 1 cc to 4 cc's an hour. So she digests wonderfully.

She again has the tube in her mouth so that mystery item disappears for her again. She moves too much. She does not sleep enough. She appears to have lost some alveoli and now needs WAY too much oxygen. The Vapotherm that we talked about did not arrive fast enough and she regressed on the CPAP. She did not sleep yesterday and worked VERY VERY hard to breathe by 9:00 AM this morning. She is tired but not too tired to be sleeping, still moving and kicking.

They have started albuterol and CPT(Chest physiotherapy)(the slapping of the back to loosen gunk from the lungs to allow the repopening of her collapsed alveoli). They are doing this every 4 hours in hopes to bring her back to at LEAST where she was on the vent when we went off the ventilator. We all need to hope that she does this as QUICKLY as possible. The oxygen level is way too high, to the point of 2 weeks ago where we went to oscillator.

Man, what a day. But the kind of "what a day" that was not like yesterday. Know what I mean.

Mystery Mouth Item!

We are not on any ventilator for the first time since birth. No air tube between the vocal cords and she made her first sounds since her first minute in this air. Understand what I am saying....NO VENTILATOR!!

She has a newfound mouth experience called a "tongue". This mystery item is a fun item for her. She moves it over and out and up and out. She also can close her mouth, took her several hours to realize this but once she did, open..close...tongue...open...spit...bubble...spit...bubble....YAWN!!

Yes, yawn, something she could never do. This is a huge, huge, HUGE step in getting there. Now if we can get off the CPAP and/or VapoTherm(these provide extra oxygen in her nose), then we are finished and breathing normally.

She could be on extra oxygen for a week or two, but it is a whole lot better that she got off the ventilators within 4 weeks! WOW!

This is a big day. BIG day! I told her 2 weeks ago, when we went back on the oscillator, that her grandmother's birthdays(yes, the Grandma's have the EXACT same birthday) is on Aug 4th, and that she needed to get them a BIG gift like getting of the respirator completely.
She pulled her tube out this morning around 8:00AM. They were going to put her on VapoTherm when the unit came in, however, she checked her watch, saw what day it was, and being the good girl that she is and listens to her daddy, she said, I have to be off the vent for my grandmas!! Yep.

Every nurse and doctor who has dealt with her has commented on how strong she is. She turned her head, yes, lifted it and turned her head OVER today! 3 1/2 weeks old and turning her head. People, if I would not have seen it, I would not have believed it. She is amazing me now. I talk and tell her to do these things, but she is really following through. Wow.

Perfect.

Grandma and Grandpa saw her eyes today for the first time. Grandpa saw a big yawn and spit. They were very pleased also to see her cheeks and face for the first time. As I said, it was a huge day!

More Milk and in the Isolette!

Today we got put back in the isolette. It is much quieter for her and she is tolerating it all well. It is now doubled to 2 cc's an hour. She is handling it very well and looking for more. Today was a GREAT day as far as oxygen saturation went, she got man-handled at 4:00 like normal but did not bother her once. She stayed perfect and no alarms went off!!

Our arterial line in our right hand has started to bleed. The surgeon came in and said that he must leave it bloody as if it were to be untaped to be clean, then it would come out. So the doctors are going to leave it as is and see if she does good enough this week to not need the thing later so that it can be taken out. So that is a step forward if she can get to the point of not needing that line in.

We were able to talk to her, touch her and be next to her box as she is not DeSAT'ing at all.
In fact, she is taking such great strides that we have a rumor as to tomorrow's events, but that is tomorrow. I am not going to reveal that rumor until it becomes truth, but when it does, everyone get ready, it will be good.

Eating, Breathing, Jumping, Rolling

Amazing what today brings us. Jonna Lil was up on her knees today again. She did something amazing with her body that you have to see in the newest movie upload. She is still getting milk.

But here is the good news, TECHNICALLY she is BREATHING on her own. Now when I say technically, I mean that the respirator is on so low of a setting that it effectively is taking no breaths for her. What it is doing is providing more oxygen than you and I breathe at 21%. She is getting 50% right now. So while she has the muscle strength and coordination to breathe now, she just does not have the lung aveoli to effectively transfer the oxygen in her body.

(The trachea divides into lobar bronchi which then divide repeatedly to form smaller and smaller tubes. The terminal branches are called bronchioles. Bronchioles conduct air to the respiratory epithelium of the sac-like alveoli. Alveoli make up most of the lung tissue and are the major sites for gas exchange. Oxygen moves from the alveolar air to the blood while CO2 moves from the blood into the alveolar air.)

Now that is great and now all we have to do is get those things to grow and we are off the vent!!

Yesterday she could kick and DeSAT, today, she ROLLED and JUMPED without issue. A great day. So now hopefully we wean off the oxygen here in the next week and we will be able to hear the first cry. We will record that for all of you to hear on the web site. Don't worry.
Also, you notice the BIG diapers on her, she has graduated to full preemie diaper instead of the Wee Pee's. Not because she grew, but because she no longer takes a wee pee. She filled up the other diapers!! Lots of pee!

Another Up and Down Day

For those of you new to this BLOGGING thing, the newest posts are at the top now, so no more scrolling down, unless you missed a day. Also, I will be journaling hopefully at night, so you get more of a feel for the actual day, instead of the next day journal where I talk about yesterday.

It was not really a down day, just a busy one. It was just that we DeSAT a lot, but it is because we are trying to remember to breathe. She is very young and her body is not ready to breathe automatically yet. She actually will stop breathing for awhile. We had to put her on a small dose of caffiene to wake her up. Today, I actually got to talk to her, as when I do she gets excited, so my talking singing and shaking her little butt kept her oxygen up and kept the alarm OFF!! Yes, normally I am making them loud, today, my presence helped keep Jonna happy and remembering to breathe or excited enough not to forget. I did this talking and singing and shaking her butt for about an hour and it made everyone happy. We will probably have days like this for weeks to come, as she is mature enough to breathe a lot, but immature enough to remember everytime, and WAY too immature to be moving that long body. That is an automatic full use of oxygen.
So it seems everything is in order and we just have to grow. She has also started her milk back after a week off. She is also getting the most milk ever, 1 cc every hour!! Woohoo, in a day she gets like and ounce!! What a pig!

My first attempt

This is the first shot at Jonna's new Blog. The latest thing in web world. It keeps up with my journal postings automatically, and if breaking news breaks out, I can email something instantly for the world to see. So as we move forward, we are blogging.