Prematurity Awareness Month

The month of November is prematurity awareness month. Because it is something that we deal with EVERYDAY we wanted to share again this year, facts and figures and life with prematurity. Although we are playing catch up for the month of October and we have a lot to catch up on, we are happy to post our facts.


Day 1:

Tyler falls into the Extreme Preemie. He was known as a micro preemie. He was under 2 pounds and born in his 25th weeks of gestation. Grayson is a Late Term preemie. He had very little issue with his prematurity minus the few hours in the NICU.

With A Shake Of PTSD On Top

I was taking a nap with Grayson this afternoon. I was taking deep breathes of his sweet baby smells and I was startled awake. As I laid there, my heart was racing and I felt like I wanted to vomit. I took a few deep breathes and remembered where I was, that I was not where I always go when my eyes are closed. That I am safe, my babies are safe and that there are no beeps and dings of monitors anywhere.

After a few deep breathes from Grayson and a few from me, my heart started to slowly slow down. As I laid there, a tear ran down my cheek and I wondered if there would ever be a time when I wouldn't go to that horrible place. That some day, that place wouldn't be etched on my eyelids.

I was fine for 93 days while we fought our way through the NICU. I was fine for the first few months. Then when we needed emergency brain surgery I lost it. I remember EVERYTHING that happened that day.

We had 6 doctors look at him and he got sicker and sicker by the hour. He wouldn't wake up to eat. All six doctors said he was doing great. As the night wore on he was VERY sick. For some reason I was shaken awake ( literally, I felt shaken) to go check on Tyler. He was in his room, gagging and dry heaving and unresponsive. Dallas was very asleep and I packed up Tyler and took him to the nearest ER. They took him up to PCMC and I went home to tell Dallas he had to come. I drove us up there. I sat with my baby till early morning. When they came in to do one last test his heart rate was slowing. I was literally watching my son slowly die. I stood by helpless.

The last test showed my worst fear. He was going to need brain surgery. NOW. His head was not doing what it was suppose and he needed a shunt. I left the room.

I left the room to throw up.

I couldn't listen to this one more minute.

I needed air.

How could this be happening?

Ty was taken to Emergency brain surgery and we waited. Soon after, every time I closed my eyes I would walk through a part of the NICU. Usually a bad part. Usually a part where a blue bag was used on his little body. Usually a part where he was dying.

NOT the first surgery. This was his number 5 and we repeated it again six months later.

I got therapy. I got medication. I have stayed on all of the above. Yet sometimes when I close my eyes, I can't help but walk through it. It makes me sick.

PTSD is a anxiety disorder that usually occurs AFTER you have experienced a traumatic event that involved the threat of injury or death. PTSD changes the bodies reaction to stress. It doesn't happen to everyone who experience the same event. Sometimes it just happens.

A few studies have shown that there are lasting effects, not only on the patient but on the parents. Watching tubes, death and life altering events happen right before their eyes can really take the parent for a ride.

I have often wondered how many people are out there that have this same problem. How many of us who have walked the halls of the NICU have it etched in our memory? How many moms are over protective and over react at the slightest anything? How many have our Pediatricians on speed dial? How many need reassurance a million times that he won't stop breathing in the middle of the night at SIX?

Thanks to medical advances, the smallest babies are being saved. Sadly, the effects are family wide. They are deep. The are etched into our lives forever.

A modern day war zone.

Why Babies need 40 weeks

Given the recent birth of our not quite "term" baby I am using a small disclaimer. There was a medical reason for Grayson to come early as a scheduled baby. I would have happily gone a few more weeks and would happily do it again.

At 35 weeks a babies brain is only 2/3 of what it will weigh at 40 weeks. That safety of a growing baby in a womb makes that brain safer upon delivery.

If you wait till 39 weeks important organs are ready to go.

• The brain, lungs and liver are ready and functioning as they should.
• The lower the change of hearing impairment and Vision issues ( issues such as ROP)
• Time to gain more weight. The bigger the baby the better they are at maintaing their temp.
• The suck swallow reflex is well established making it easier and better for them to eat properly. Even babies born as early as Grayson have trouble cordinating their food and tend to have issues with breast feeding.
• They deserve it. They deserve to be born as healthy as possible.

All babies deserve to have the best start in life.

Why not give it to them?

Wait till 39 weeks to give them a start at life.

* Please note that not all babies can be delivered safely at 40 weeks. Please talk to your health care provider for more information.*

November = Prematurity Awareness

In the United States, 1 in 8 babies is born premature.

Worldwide 13 MILLION babies are born premature.

Prematurity is the leading killer of newborns in America. Those that survive often suffer life long health conditions like Cerebral Palsy, Blindness, Chronic lung disease, brain damage, Hydrocephalus and many other conditions.

All babies deserve their 9 months.

We fight, so they don't have to.

Prematurity Awareness 2010

September 21, 2005 changed my life. Not only did I become a mom to a beautiful little boy, but I joined a club of moms of premature infants.Tyler was born at 25 weeks and 3 days. He was small for his gestation and was 1 lb 11 oz. He was 94 days early. He is a fighter. Because he didn't get his full 40 weeks he had to fight.

5 years later he is still fighting.

Prematurity changed his life. Because of his early birth he suffered grade 3 and 4 brain bleeds. Those bleeds inflicted such a wound that he has hydrocephalus from it. He has ROP which has left him almost legally blind and he has Cerebral Palsy. The bleeds caused damage and the Cerebral Palsy is a result.

Prematurity has left him strong, stubborn, cute and a MIRACLE.

As a 5 year old, we may not be "caught" up but strides have been made. Tyler started talking in July and has full on sentences. He walks. He LOVES school. He LOVES kids and he is amazing.

He gets anything he asks for and he really wants to have a sister.... soon.

Prematurity is something that effects 1 in 8 babies.

It is the NUMBER ONE KILLER of babies.

The cost of having a premature infant is TEN TIMES more than that of a typical newborn.

ROP is one of the leading causes of blindness in infants. It is ONLY found in Premature infants. Those infants are under 30 weeks gestation.

Know the signs of preterm labor and CALL or go to the Emergency room

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November is Prematurity Awareness Month

Every year 1 in 8 babies are born prematurely. Many will be to sick and to little to go home. During the month of November people across the world will be blogging to educate others about the risks of premature labor, premature birth and the risk associated with being born early.

On September 21st 2005 our lives changed when our little baby was born 15 weeks early. I was not on any high risk checklist. I was not at risk for delivering early. I had prenatal care and I didn't do drugs. But still, our world was rocked with the unexpected turn of events which changed our lives forever.

Tyler survived his early birth and was released on Dec. 23rd, 2005. One day before his due date. Though he has complications as a direct result from his prematurity and we are faced with life long disabilities, we see miracles every day.

Please join us in our fight to give babies their nine months. The FULL nine months.. 40 weeks!!

We fight because babies shouldn't have to!

And ANOTHER word from your Cervix!

Holy Cervix posts! If you are a boy ( or my dad) you don't have to read or if you are my Brother in law I just have to say placenta, placenta, placenta, and I know you will stop reading!

This is actually a pretty cool story. A woman was diagnosed as having something wrong with her cervix that didn't allow her to carry a baby to term. She lost MANY babies early on in pregnancy but she also lost babies at 18,19 and 23 weeks.

After the later term deaths she was given a procedure that is done fairly often in the US where they put a piece of material over the top of the cervix after lifting up the Uterus. This makes it so the baby is held in place by the material even if the cervix starts to open.

The women was able to keep her child in till 37 weeks with this procedure.

Yet another advancement in trying to give babies their 9 months.

February: The anniversary month

This February starts a Wonderfully busy month of anniversaries for us! In fact if we can get through it we will be looking at much better odds.

Our average for Valentines spent together as a couple is 1 in 4.. we are hoping to make that 2-5. What do you think our odds are of getting to spend that day OUTSIDE a hospital?

What has kept up in the hospital for this day:

Feb14, 2006 Tyler was scheduled for his first craniosynostosis surgery. It meant a week in the ICU and a day or 2 in the infant unit. Cranisosynostosis is the premature fusion of his sutures in his head. We were told at that time it was less than one percent chance we would be doing this again.

Feb 14th 2007: Tyler was the one percent and we had to do a total skull reconstruction in the mean time Dallas was trying to get us ready to move to a new state.

Feb.14th 2008 We got to spend together because his seizure monitoring went faster than normal and they were able to get him home faster. So it was the FIRST time we spend valentines TOGETHER.

Feb14th 2009 was met with a child in the ICU at banner desert from emergency brain surgery. So all plans we had were canceled to prepare for him to come home. Home coming from brain surgery includes all carpets cleaned from top to bottom. All surfaces bleach and floors scrubbed till you can eat on them .

So what predictions can you make for Feb.14Th this year?

Dealing with Spasticity

I always thought that everyone would want to have TIGHT muscles. Tight buns, tight abs, tight legs.. TIGHT TIGHT!! Everyone likes tight. EXCEPT...... YOUR BABY!! Thanks to our brain bleed we have TIGHT TIGHT TIGHT. He has been "different" feeling since he was little. You could always find him standing, jumping and bouncing from the time his little feet would let him.

There were times we would have him lying on the couch between us letting his legs go a mile a minute kicking us to gain strength Little did we know that it would be abnormal strength in one muscles zone and not strong enough in the other.

We really noticed when the sitting milestone didn't really happen. It took a lot of repetitious movements for him to get the "feel" of it. Finally we got him sitting. Crawling came easier and then walking felt like it never came .

Ty walks with a "gimp" and just in the last year is when we really started treating his spastic muscles. We have a team now. Sometimes I don't know who does what in the team but none the less it is a team

We have tried casting, AFO's, SMO, and now botox. The next step is phenol shots. They last longer and are more immediate.

Phenol needs to be put into the nerve where they enter the muscles so they are much more painful. Since it is not just a treatment by itself it is usually combined with other therapy

Watching Tyler and his muscles and his walking makes me sad sometimes. No matter what we do it will never change it to "normal" we can just better our normal.

ROP continued

During our course of therapy with Tyler we were given a PIP girl. Her name is Aften. PIP is the parent infant program through the state deaf and blind school. This therapy was not a hard one to get and we had them from the second we left the NICU.

Aften was a LIFE SAVER! She has no idea how much she helped me. Aften and I still keep in contact and she is raising 2 very special girls as well. They both have hearing loss. Ironically she worked with eyes and her hubby works with speech so I think they have their grounds covered.

The pip program was helping us parents LEARN about our child's vision loss and how to maximize what they have to help them better them selves and so the can learn to use their other senses to catch up and be functioning in society.

So many things are dependant on sight and when that is gone or missing in some part or another so many things are messed up.

Aften gave me a book. It is a very small book. I don't even think she remembered she gave it to me. I still have it. this book has some AWESOME suggestions

Some things I learned :

1. Their world is so close to them to start. Even if they can't see well babies in general get everything brought to them. Babies with visual impairment will see it different. Use their hands more or put things in their mouth longer. Its the only way they can "see" it the way they need to.
   
2. A routine is very very important thing for them. Not just routine in what they do but routine in where things are. Ty hasn't needed this till recently but he needs to know where his stuff is. If we can find what he wanted he has a few meltdowns. But overall he knows where his stuff is so he can get around his world
   
3. READ READ READ!!!! Tyler didn't really care much for books till recently. Now he loves them But when he was younger we had touch and feel books. Tactile stimulation is amazing for them. We still do all we can to find books that Ty can see ( big print) and things that he can touch. There are also ways that you can turn your regular books into tactile books.
   
4. Learn what they can see. In Arizona Ty LOVED the light boxes. he loved anything to do with light and light switches. He still does. It worked well for him
   

Now that he is older I have a hard time explaining to those around us what he sees. We are currently trying to explain his sensory issues and because of one of the senses being broken we see more issues in other ways. Having a support system willing to help be flexible is so important.

Sight is such a huge part of sensory. I would love to be able to have a family member who wants to learn more come and see some things we do for sensory and to also have others sit back and try to understand. We know that we can't control everything but we have so many things that will help him be at ease and behave better.

ROP is hard. Its a lonely world for mom and baby! I am thankful for people like Aften coming in to our home, playing with our child and getting him to laugh~

* PS I still remember how hard we got him to laugh at the animal bowling* your rock AFTEN

The preemie experience........

For a small glimpse into my feelings and a little glimpse into why I feel the way I do or why I react the way I do. This poem helps me realize that it is OK!

The Preemie Experience
By Sandra D Moore

The preemie experience is the shattering of all your dreams
For a normal, healthy delivery,
Of the ability to carry home a beautiful squirming bundle
After a short stay in the hospital.

It is lying there in your hospital room listening to
The happy sounds of whole families joined
Together by the birth of a grandchild, cousin, niece,
Or nephew, and knowing that your
Child is miles away and may not survive long enough
For you to see or simply touch.

It is that first glimpse of a skinny, scrawny, not much bigger
Than a Barbie doll child
And feeling, fear, awe, and joy for such a fragile soul.

It is sitting by your baby’s “bedside” day after day,
Week after week, month after month,
Alternating between the emotional high of “Look, her eyes are open,” or “She’s crying!”
And the lows of “I’m sorry, Mrs. Moore. Something has
Shown up in Lauren’s ultrasound,”
Or even “There is nothing we can do…”

It is hearing the alarms go off for the twentieth time in less
Than fifteen minutes because your
Child’s heart rate keeps hitting zero.

It is watching children dying around you, wondering if
Your child will be next.It is hearing your child’s cry of distress as the nurses
Insert yet another IV and do another
Round of daily blood tests.It is meeting other parents of children who are doing far better
And wondering, “Why me?”
And meeting parents of children who have just died,
And praising God for His mercy
To your child and feeling guilty because your child is alive
And someone else is grieving for theirs.
It is days of nightmarish testing and coping with less
Than positive results to the tests.
It is days of joy at seeing the first eyelash appear,
The child gain a whole ounce in one day,
And two bright shiny eyes look at you and into your soul,
And knowing that your child now recognizes you as Mama or Dada;
Or perhaps looks at you and does not see you at all…

It is that final hurdle before coming home!
It is the sorrow of waiting for the monitor company
Representative to show you what to do
If the alarm sounds when your child is choking,
Gasping for breath, or simply dying.
It is the joy of just being away from all those nurses
And tubes and wires and beeps, and
Walking into the nursery you hastily prepared because, after all,
The child wasn’t due for another three months!

It is thinking the nightmare is over…only to realize it still
Continues in the form of
Such acronyms as PVL, RSV, BPD, CP and numerous others.

It is the final realization that those developmental delays
Have to be dealt with,
That reflux is a normal and unfortunate occurrence in most preemies,
That the constant fight to gain weight is in direct proportion
To a preemie’s ability to do so.

It is watching a child struggle to pick up his or her head, sit,
Crawl, or walk.
It is witnessing only silence when the child should be babbling,
Because the child cannot hear.

It is the mental images of a child running and playing
And communicating with others in a
Perfectly normal manner that are marred when you face years of therapy
In order to simply get the child to eat by himself or herself,
To talk or walk and then run.

The preemie experience is a journey…
A journey through your soul in order to find the faith and strength to cope,
A journey of the mind when you face the emotional weariness,
A journey of the heart…to accept that, no matter what,

This child is yours,

And you will love this child no matter what.

November is Prematurity Awareness Month

~ Preemie FACT: 1 in 8 babies are born premature in the United States. Many will be to small or sick to even make it home. ~

November is Prematurity Awareness Month. In September of 2005 I started blogging so that friends and family could keep track of the roller coaster ride of prematurity we were on. I vowed from that day on that I would do my best to be an advocate AND a voice for those too tiny to do it on their own.

I will be posting our birth story a little later in the Month and most have already heard or read it. I feel it is important to share it and our story. Some times it is a negative time and most of the time it is positive. There have been so many who have run across our blog and have been filled with hope and information. I, in turn, have found so many people who are on the same journey that have filled us with hope and information.

With blogging for prematurity we hope to spread the word and provide information regarding premature infants and the struggles they face. Provide ways to keep kids healthy and to give you a glimpse into the life we live.

Challenge for the MONTH and especially for November 17th: Friends and family ( and especially family) If you have been touched by Prematurity in one way or another, please post during the month of November in honor of that preemie. Show your love and support. The more information out there the more those on the journey can feel they have some where to turn.

*If you are posting a post in Honor of a preemie, leave me a comment so we can link your blog and get the word out!*