An almost birthday

For the last 4 Christmas' we have celebrated Tyler's would of should have birthday and his release from the NICU. He came home Dec.23,2005. His due date was Dec.24th so as excited as we were, we always gave him a little "something" on the 23rd.

Christmas was different that year. There wasn't a lot of gifts but there was a lot of love. Loads and loads. It started some traditions among Dallas and I that I think will go forever. This year though, things might be a little different.

In the last 6 months Tyler has developed and advanced leaps and bounds. So much so that I don't think much about his "Should have" birthday. With talk of Santa, Sleighs and reindeer there isn't much room for sadness.

I still carry a lot of guilt for not being able to protect my baby and for watching him go through so much suffering. It was my bodies fault and there is nothing I can do to make myself get over it. But, the advances and the talking and the great stuff sure lessens the blow.

The traditions that started 4 years ago will continue, there is one that we have outgrown. Those are the ones that hurt less, year after year.

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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The Preemie Primer- A book Review and GIVE AWAY!!!!

Almost 5 years ago I embarked on the journey of a lifetime. A trip that I didn't plan on and a ride we can't get to stop. While the shove into parenthood was scary enough we added the extra stress of the NICU. Nothing can prepare you for the sights, sounds and terms.

As I was getting overwhelmed with words and diagnosis' I turned to the worst place on EARTH!

GOOGLE

You see, google has the worst of the worst. I needed simple yet understandable terms where I could figure out the worst of the worst but still have hope.

I didn't have that place.

Recently a new book came out called The Preemie Primer and was written by Dr. Jennifer Gunter. She is an OBGYN and a preemie mom. She understands the feelings of being a mom in the scariest place on earth. ( Both professionally and as a mother!)

She starts out the book describing her own story. Her own fear. Facing her own reality. She makes me feel like as a OB she knew all the answers but as a mother felt like the rest of us did. She was full of anxiety and scared.

She address the very basic of prematurity and health. She delivers it in a very plain and yet educational way. It is a VERY easy read. She also gives you facts and numbers. Things I needed to see.

Because the book spans the VAST picture of preemie hood it has some things that didn't apply to me and my situation. But the information was packed in there.

There are so many terms and conditions that are in the world of prematurity that covering every single one would be almost impossible but it seems Dr. Gunter has done an amazing job.

I would like an author somewhere to touch on the emotional impact AFTER the birth for the mother. Dr. Gunter did do that but I think it deserves much more time and a MILLION pages. I think more resources to send the parents in this situation. ( such as A Internet group, list of blogs, parents who are open to being contacted) I know when I was in the middle of the bad stuff it would have been nice to have someone. I met a few through the above mentioned ways but to have someone DIRECT me there would have been amazing.

The most important part that I felt was touched on was the traveling through the health system. There is so many things that could either make or break what you are hoping to get. Financially it is extremely exhausting. Follow the advice given. She does a great job explaining what to ask for.

After living the preemie world for almost 5 years ( 5 years!) I can say that I have passed that toddler hood and survived. If you are just getting started in your journey, PICK up this book. GET a copy. Read it and store the information that you need. You can and will get through the NICU.

SO... to help a lucky NICU mom or an OLD NICU mom get to experience the Preemie Primer we are giving away a COPY!!!!!!

So to win a copy of this book a few things need to be done in order to be entered.

1. You must have a address in the United States. ( if you are in Canada email me)
2. Leave a comment telling us why you would like this book.
3. extra entries: blog about it, link this blog ( worth 3 points.....)
4. Become a follower either on here ( google reader or your own reader) but tell me which one you are doing,
5. Follow us on Facebook
6. Follow @miraclepreemie and @DrJenGunter on twitter and @ me so I know you are here!!!

You have 6 ways to win. A separate comment must be made for each of the things you do in order for it to be counted as a entry.... SO if you do all 6 there should be SIX comments by you!!!!!!!

Entries must be received before thursday at midnight PST. Twitter will be FULL of #nicu posts and links. Link back during that time to see who the winner is.

READY....... GO!

Follicles or no follicles

Today is kinda cross post that goes on my fertility blog. But since it is impacting us HERE too I thought WHY not share it here.

On Friday we went in for our ultrasound to see how our follicles looked for this round of IUI. WE have not gotten all the way to the IUI part in our cycle because something is broken each time. It seems the broken piece in our puzzle is ME!

We did FSH shots which are suppose to be MUCH harsher than clomid and provide them with more follicles to work with. Clomid we had one "sort of" egg and with FSH we had ZERO!

Lots of disappointment and sadness ensued and now 2 days of DOUBLE The dose for the next 2 days. So Off I went to pick up today meds and because the best Nurse I could be and shot it on in.

Tomorrow is the ultrasound to see if there is any change with it just being further in my cycle. If not, cycle 2 is a BUST!

So.. if you could all give us some prayers and some extra follicles and eggs to show up that would be CRAPtastic!

In the Middle of the Night

With the bus incident this week I have had a HARD week.

Hard.

Not only was MY emotions out of whack but he wasn't feeling well. He had Rotovirus since last week and just hasn't felt well. Thankfully that resolved before sending him back to school on Wednesday.

My emotions, however, were not getting better. But a realization of so many things. A self reflective kind of emotion.

The night after Ty was forgotten on the bus I was awoken with the very distinct memory/dream or thought to say a prayer. I don't know why and I don't know what I was suppose to say a prayer about but given my experience in the past, strange ideas come to you in the night and you better act!

Ty got up soon after that and it was early. We went downstairs and started a movie and got breakfast for him. I laid on the couch and the thought came again. So I acted again.

I was laying on the couch ( I am not kidding.. it was EARLY) and my thought was "Maybe you know how it feels to not hear from your child. Yours was 40 minutes. When was the last time you talked to me."

And the "idea" was shocking.

I pray. But how long as it been since I have really prayed? How long has it been since I realized just how important Tyler is and how many blessing he brings to us. That with the trials he is the ONE thing that is the most important for Dallas and I.

The panic of NOT having Tyler here was more than I can bear. He is the sun and the moon. He is the world to both of us! Never again do I want to feel like my world just got turned upside down. In doing so, I need to remember where I came from and be thankful. And share that thanks.

Give Thanks. Hug the ones I love.

And Tell them often.

I love you.

A 2 milestone day

I think in real life it was more like a 3 milestone day and possibly even more( OK... I think it was 4.. we will count at the end... UPDATE: final count is 5!!!!). Despite the efforts of my migraine, Ty had a really good day and we left the CP clinic with our head held high. It is tough to not be worried or to get down at appointments like today but Ty held his own and he rocked the rest of the day.

Today was the CP clinic at Shriner's hospital. Again, I can't say enough about the Shrines and for the care they give Tyler. It is impressive and done all on donations.

At the CP clinic we see our rehab doc, her nurse practitioner and usually a developmental pediatrician. The developmental pediatrician is only there when and if we have major developmental concerns on the side of the rehab doc. For a first time in a long time I am proud to say NOPE. He is doing really well. Does that mean he is caught up.. OH NO! But he is progressing and quickly which is nice to hear.

The rehab doc we have is Dr. Gooch. She is great. She gave us a great bill of health and wonderful encouragement. She still thinks that Tyler will continue to improve with speech and was pretty positive with his phenol shots. This is the first follow up for them we have had.

So the plan for Tyler is: Increase his PT and get him to do better with hip extension and stamina. She gave us some games to play with him and is really encouraging playing soccer or kicking the ball as something he really needs. She also encouraged playing obstacle courses ( which he rocks at because he THROWS everything.)

While we were leaving Shriner's we walked past the HUGE statue and Ty wanted to go closer. He called it a tree and then he licked it. It was interesting to see that what he saw and what he associated it with was something big. Like a tree.

And he was LICKING the "tree"!

After we got home his dad played outside with him for awhile. Dallas would tell him to go to the middle and he would go right to the middle of the yard. Then when his dad asked him to use his words he would sign Dad, the sound K (The sound K was for kick. ) and then sign please. HUGE.

Ty has his dad!

After awhile his dad had to go back in to work so we went to the local park. He LOVES the park and especially likes it when there are other kids there. Since we are pretty active in our local ward lots of the kids know Tyler and know that he has extra needs and most of them are really nice about them and most can't wait to show him or take him somewhere.

We hadn't been there for all winter but Ty ran right up and went up the stairs and down the slide. He was so excited to be outside. As he got more confident in going up the stairs,I looked up to see SOMEONE standing UP and going up the stairs. YEP he was going up without crawling.

Seriously... Look at that smile!

Next up he kept going... and went down the big slide. He always says "Weee" when he goes down. The big slide takes his breathe away and he said it when he got to the bottom.

NEXT he got even more daring and climbed UP the climbing wall. He needed such a little bit of help on the bottom but he did the rest himself and up he went. ALL by himself. That is HUGE. He is on his way to being able to maneuver himself all alone at the playground.

Next up.. Learning to ride a tricycle with no help. I was thinking of getting an adaptive one from Shriner's or to see if they can help him get even better!

For those not sure WHAT milestones we hit here is the quick cap!

• Walking OUT of Shriner's with no assistance
• Getting good news on his appointment
• Standing up and walking UP the stairs
• Going down the big BIG slide
• Climbing up the climbing wall

Way back When- Wednesdays

Last week on my Way Back Wednesday was my husbands take on our "story." Here is mine: Same outcome... different places.

Four years ago (written for his birthday this last year) I was laying in a hospital bed being told that I was going to have to deliver my son. I was told not to yell, scream, cry, or even throw up.

My only thought......It was to early……

September 20th 2005 : I had been feeling really yucky all day. I had been up for most of the night not feeling well. Having some strange cramps and some strange discharge ( hindsight it was my mucus plug) There was something not right. I called my doctor and the nurse told me to take it easy and not do anything, that I was being a paranoid first time mom. I stayed on the couch watching TV and doing homework. Dallas came home early from work and he had to go to a job interview that night. I decided to go to work. I was sitting at work so no big deal. He was going to drop me off and when my shift was over he would come and get me. Big Brother season finale was on and we were gonna watch it together. I got off work and he was not there yet. I called him and he was on his way so I decided to walk and meet him. BIG mistake. I started to cramp that evening but the Nurse earlier said that if there were less than four in an hour then it was not a big deal. So I was up and down with the feeling that I needed to go to the bathroom. I couldn't go but I really had to. I decided to eat something. It all came back up. I keep getting sicker and sicker as the night went on.

We decided that I had a bladder infection and that we needed to go to the ER. We decided to go to Alta View so that Dallas and his Dad could give me a blessing. ( At the time they lived close by Alta View) Dallas went into the ER and told them that I was sick and outside so if they could help me. They took me into the Labor and delivery part of the hospital.

I had the most wonderful nurse. Her name was Windy. She had me take a urine sample and put on a monitor. The monitor didn’t pick up anything including a heart beat. They had to get the doppler out just to find a heart beat. I could feel Tyler kicking the whole time and knew he was alive but they couldn't find him. They figured I had a bladder infection. They were not in a hurry to get things moving knowing a bag of fluid and antibiotics would send me on my way. But it was more than that.

I was having a baby!! And it was too soon.

The room went crazy. Nurses were everywhere and doctors were called. I was laying there so confused and thinking that it was to early. That he was not really coming and they were wrong. They tipped my bed upside down and started me on Magnesium to stop the labor and gave me shots of steroids to help Tyler's lungs.

There was nothing they could do he was coming.

15 week early.

It was to early. I knew deep in my heart that it was to early. If he came now he would not make it. I would go home empty handed with a broken heart.

They called maternal life flight to come and get me. They got there and I was to far dilated to take on the helicopter. For two hours they sat there discussing what they should do with me. At that point they called pediatric life flight to take my extremely tiny infant somewhere where they could help him. You see, we made the wrong choice. We went to the wrong place. We went someplace that didn't take care of sick babies.

With me staying and Tyler going they decided to do a c-section at that point and do it without being in an emergency situation. My water had not broken yet. His feet were hanging out. He was coming. The nurse put in my catheter and my water broke.

It became an emergency situation.

As I was wheeled into the OR I had to leave the love of my life behind with no idea how or what the future held for our son. We loved him so much but had never met him. He was too soon!!! As I moved onto the operating table from my bed I had another contraction. Up till this point I had no pain medication. The anesthesiologist decided that I had had enough and didn’t even wait to start putting me under. The last thing I remember was them draping my belly.

Waking up I immediately asked for Dallas and they let him in and he told me that they were working on him and that he had seen him and that he was alive. Dallas had been watching them do CPR on our little son. I then went back to sleep. On the way back to my room I remember being wheeled past my parents and everyone telling me that he was beautiful. They were going to let me see him before they took him to LDS or PCMC. They wheeled him into my room. I couldn't really see him because I had to take my contacts out to have surgery. But Dallas gave him a blessing and I KNEW that we would be okay.

That day our family would be started that day.

Tyler Kenneth Brown, my sweet, amazing and miracle son was born at 1:24 AM on September 21st 2005. He weighed 1 lb 11oz. He was 13 inches long. He was life flighted by helicopter to LDS hospital where he would stay for 30 days. He would have one surgery, and suffer from grade 3 and 4 brain bleeds. He was transferred to have a reservoir placed for Hydrocephalus. He would stay at PCMC for 63 days. He would endure 2 more surgeries( resevoir placement and ROP stage 3) and many ups and downs. He came home one day before his due date…. December 23, 2005.

*Picture above is the first time I held him. He was about 3 weeks old. It was before his transfer to PCMC.*

Way back When- Wednesdays

I needed a place to link people back to our story. Since we are not on the same blog we were on then I thought I would start from the beginning and Way back When is what will happen..

SOOOO Our story. WAY BACK WHEN:

This was written by Dallas when we were in the NICU. I was kind of out of it and not up to par so he started me a website for Tyler. This was the second post. The first was just letting those who saw it ( which was like no one) that we had Tyler. This was his experience that night.

This all started two nights ago when Nancy started feeling cramps at 25 weeks into her first pregnancy.
The next morning (yesterday 9-20-05) she called her OBGYN and reported having some cramps and some discharge.
She was told that since there was no current cramping just to watch it.
Then at 8:00pm she started having really bad cramps which turned out to be contractions.
Around 10pm she started vomiting and the cramps got so bad that I insisted we go to the hospital.
So we took the drive to Alta View hospital.
When we showed up in the ER we were automatically taken to the women’s center.
After some tests the doctors found that Nancy was completely dilated and the sack was protruding.
They also found that the baby was head up, so they called for Life Flight to take her to either LDS Hospital or the U of U Hospital.
Life Flight showed up however they were unwilling to take her since she was fully dilated, because they have a rule that they do not transfer if the woman is dilated at a 6 or above.
Therefore Life Flight and the doctors argued back and forth in front of us for a good hour, each trying to convince the other of their recommendations.
They were getting ready to finally decided to take her when the doctor decided to take one more look.
He then found that the baby was coming right now and she could no longer be transferred.
Life Flight therefore left and they prepped Nancy for a c-section.
Once the original Life Flight left they called in the newborn Life Flight specialists and the doctors took her into the OR. (I was unable to accompany my wife since they had to put her to sleep.)
The baby was delivered at 1:24am, bottom first.
The baby was rushed into ICU where he began steps to save his life, including chest compressions on his frail little body.
By this time the new Life Flight had landed and was helping the doctors stabilize Tyler.
Once he was stable enough to transfer they pushed him into the room with his mother for a quick glance and a Priesthood blessing.
They then rushed him to the helicopter, where I helped them load my new baby son into the Life Flight helicopter, and then watched them take off to LDS Hospital.
Then I went in and briefly talked to my wife and then headed to LDS Hospital.
When I arrived he had already landed and they were taking steps to stabilize him again.
After a long wait they finally allowed me into the NICU to see my son after landing.
There was my first and only child, tiny as could be hooked up to all types of equipment.
One of the nurses kindly sat with me and tried to explain everything that was happening.
At 6:30am they made me leave and so I therefore headed home after being awake for 24 hours straight and having a roller coaster of emotions.
Once arriving home I was unable to get any sleep as my emotions and worries once again overtook me.
It is now the afternoon after this amazing and terrifying experience and I have yet to get any sleep.
I have visited my wife again and from all reports mother and son are doing as well as can be expected with the baby being this early.
This is a miracle that is still in progress. Especially since when we were first told we were having the baby this morning we were also told that the chances for the baby’s survival were not very good.
I was later told that my son is a fighter and that is a great thing and that his chances were now at about 80% that he will survive.
Since he is so early he is also unable to create his own red blood cells and therefore with the loss of blood and the blood taken for tests, I was told he would have to have the first of many blood transfusions throughout the next few months.
His blood type is O+ and we thank all that donate blood, and especially thank the unknown people whose blood Tyler has and will get.
I would also like to state that the Women’s Center doctors and nurses at both LDS Hospital and especially Alta View Hospital were SO amazing and so thoughtful and helpful.
We ask all too please keep our family in their thoughts and prayers, as we still have a long, expensive, and tough battle in front of us, with at least 3 months in the hospital.
If all goes well we hope to be able to finally take him home around Christmas.

His version is a lot of what I remember. He doesn't post some of the details that he has since remember or always did remember and didn't' want to share. His journaling of that experience has been so amazing for me!

So stay tuned. We have a LONG story to tell.

Happy Birthday!

Today is my best friends birthday. He is the MOST amazing best friend a girl could ask for. I honestly feel like I am the most luckiest person in the world. Here are a few reason why I love this man!

He is Tyler's Hero. His best bud. MY best friend.

A protector of all things. His strong arms and hands are always ready to do the protecting.

He has gracefully lived up to the challenge of having a special kiddo. He has learned how to move him, help him and make him be better. Watching him father this special little guy has made my love grow TEN fold.

After shunt surgery placement it was HARD. Tyler was never happy. He was crying all the time. I was losing my patience. This picture captures them perfect. He is so calm, gently and caring no matter what. They have a look about both of them. When they are together my heart skips a few beats.

He is my best friend. My world. And he holds OUR world in his hands. I couldn't ask for a better partner in life than Dallas. I thank my Heavenly Father for giving me Dallas EVERY single day.

Dallas is unselfish. He always has been. He always puts Tyler and I first.

After we moved to Arizona we were solely relying on each other. There were times that he would come home only to work all night to get his business going. In fact he STILL does that. He got a job here in Utah because he was unselfish. He has worked hard enough in the last 4 years of our marriage to keep me home with Tyler. He has put so much extra effort in that he has made a successful business and we ALWAYS have what we need.

Now back in Utah he is even more my best friend. There is not a moment that goes by that I don't miss him when he is gone to work. He is there when I need a hug or a sounding board or a place to vent my frustrations and anger.

He is Handsome. Oh is he handsome. I smile when I look at him. I LOVE his dimples. I love the way he looks at me and smiles. I love when he taps me on the shoulder to smile at something that Tyler is doing. When I look into the eyes of my child, though they are blue like mine the soul is that of Dallas. It is Caring, loving and unselfish to!

He is supportive. His house is looking like a craft store and he NEVER complains because he says it makes me happy. During my Grandfathers funeral he was there holding my hand and giving me comfort when I was sad.

He is an amazing father. Though all circumstances were not in our control when we were in the NICU he has proved time and time again that he is the best father that I could ask for my child(ren). He has proven that he will step out of his comfort zone to be there for me and our child in any way he can.

He trusts me. As a wife and mother he trusts my gut instinct. A few times it has failed us but he never loses that trust in me. He always listens when I say something isn't right.

Most of all he is mine for Eternity. No matter what happens in this life he is mine in the next. He is a strong and worthy priesthood holder in my home. He is loving, caring, sweet, gentle, understanding, protective, a father and a provider and most of all he is mine.

D, I love you so much and hope that you have a wonderful day. I can't thank you enough for traveling this journey with me. I love you... even without lap band :)

A team of support

There are so many people who are a part of the team. Finding what works for you and your child can be hard. Some won't understand what is going on, others won't want to face the reality of it. But most of all you as a parent need to find a place to go where you can have understanding of your situation and most of all compassion AND someone who gets it.

Since I started on my Preemie journey I have found a few online support groups on yahoo that have been a wonderful resource to me. I have become a national moderator of one of them and have really enjoyed watching all the people who have come in the start of their journey frantic for answers, find what they are looking for and then offer support to others.

Your spouse is a awesome support. One thing we were told was that this would make or break our marriage. We had to work hard at finding the right balance for us. When he is up we find that I am down or vice versa. When I need a sound opinion he is there. He has been amazing.

Another thing that helps with support is finding support in those around you. It may not be the same as the support you find in others going through the same journey but support is what it is.

Good luck in your journey. Keep your chin up.

Only a few more days for prematurity awareness day. Please PLEASE in showing your support for our preemie, please post in honor of him.

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.

Kangaroo Care

One of the known benefits of prematurity and parenting is Kangaroo care. I am sad to say we didn't do enough of it! In fact, I don't think we did it more than just once and it was when one of the nurses was trying to get me to produce more milk.

Though we did hold him more than the average preemie ( that I have heard anyway) we didn't do much skin to skin. But kanagroo care is a very effective bonding technique AND has awesome medical benefits.

What it is? Kangaroo Care consists of placing a diaper clad premature baby in an upright position on a parent's bare chest - tummy to tummy, in between the breasts. Most studies have proven that Kangaroo Care has a major, positive impact on babies and their parents; some studies have proven there is no change; but no study has proven that Kangaroo Care has hurt either parent or baby.


What it does?

Decreases pain in preterm infants. There is some evidence that skin to skin contact or KMC lessens the pain response in full term and moderately preterm babies, but there are no studies on how very preterm babies may benefit.

Increases Lactation in mothers and helps baby regulate temperature : In 1990, Susan Ludington (Heart and Lung, 19 (5): 445-451) concluded that mothers showed thermal synchrony with their babies. A recent study placed babies in Kangaroo Care position on the mother's chest and temperatures were taken periodically of both the mother's chest and the baby. The study concluded that when the baby got cold, the mother's body temperature would increase to 'warm' the baby up. The reverse was also true. Given a suggestion of "Your baby looks warm to me" by a nurse, the mother's chest temperature would decrease within minutes to compensate. Extra blankets and monitoring of baby's temperature might be needed when Dad or others practice Kangaroo Care, but in 1997, Karl Bauer, et al (Journal of Pediatrics, 130 (2): 240-244) concluded that one hour of skin-to-skin contact (Kangaroo Care) was no cold stress to preterm infants.

In 1998, Papi A Gomez, et al (An Esp Pediatr 1998 Jun;48 (6): 631-633 - Spanish) found infants in Kangaroo Care for > 50 minutes were 8 times more likely to breast feed spontaneously. Kangaroo Care allows for easy access to the breast, and the skin-to-skin contact increases milk let-down. A receiving blanket, strategically placed to catch extra milk is extremely helpful - especially if the baby is unable to breast feed.

• Regulate his heart and breathing rates
• Gain weight
• Spend more time in deep sleep
• Spend more time being quiet and alert and less time crying
• Have a better chance of successful breastfeeding (kangaroo care can improve the mother's breast milk production)

As a mom who LOVED holding her sweet baby but didn't get a chance to do the above make sure you realize that you do what you can and Touch by itself is so good for your baby. They feel loved and know you are there.

Keep up the good work moms. You can do it.

for more Info go here and here

~ Preemie Fact: Half of all neurological disabilities in children are related to prematurity. ~

In September for Tyler's Birthday I posted his birth story. I am going to re post it in Honor of him and his life and for raising awareness. Please take the CHALLENGE! Blog ( one blog) in honor of a premature infant to raise awareness. Everyone deserves their nine months.

Four years ago I was laying in a hospital bed being told that I was going to have to deliver my son. I was told not to yell, scream, cry, or even throw up.

My only thought......It was to early……

September 20th 2005 : I had been feeling really yucky all day. I had been up for most of the night not feeling well. Having some strange cramps and some strange discharge ( hindsight it was my mucus plug) There was something not right. I called my doctor and the nurse told me to take it easy and not do anything, that I was being a paranoid first time mom. I stayed on the couch watching TV and doing homework. Dallas came home early from work and he had to go to a job interview that night. I decided to go to work. I was sitting at work so no big deal. He was going to drop me off and when my shift was over he would come and get me. Big Brother season finale was on and we were gonna watch it together. I got off work and he was not there yet. I called him and he was on his way so I decided to walk and meet him. BIG mistake. I started to cramp that evening but the Nurse earlier said that if there were less than four in an hour then it was not a big deal. So I was up and down with the feeling that I needed to go to the bathroom. I couldn't go but I really had to. I decided to eat something. It all came back up. I keep getting sicker and sicker as the night went on.

We decided that I had a bladder infection and that we needed to go to the ER. We decided to go to Alta View so that Dallas and his Dad could give me a blessing. ( At the time they lived close by Alta View) Dallas went into the ER and told them that I was sick and outside so if they could help me. They took me into the Labor and delivery part of the hospital.

I had the most wonderful nurse. Her name was Windy. She had me take a urine sample and put on a monitor. The monitor didn’t pick up anything including a heart beat. They had to get the Doppler out just to find a heart beat. I could feel Tyler kicking the whole time and knew he was alive but they couldn't find him. They figured I had a bladder infection. They were not in a hurry to get things moving knowing a bag of fluid and antibiotics would send me on my way. But it was more than that.

I was having a baby!! And it was too soon.

The room went crazy. Nurses were everywhere and doctors were called. I was laying there so confused and thinking that it was to early. That he was not really coming and they were wrong. They tipped my bed upside down and started me on Magnesium to stop the labor and gave me shots of steroids to help Tyler's lungs.

There was nothing they could do he was coming.

15 week early.

It was to early. I knew deep in my heart that it was to early. If he came now he would not make it. I would go home empty handed with a broken heart.

They called maternal life flight to come and get me. They got there and I was to far dilated to take on the helicopter. For two hours they sat there discussing what they should do with me. At that point they called pediatric life flight to take my extremely tiny infant somewhere where they could help him. You see, we made the wrong choice. We went to the wrong place. We went someplace that didn't take care of sick babies.

With me staying and Tyler going they decided to do a c-section at that point and do it without being in an emergency situation. My water had not broken yet. His feet were hanging out. He was coming. The nurse put in my catheter and my water broke.

It became an emergency situation.

As I was wheeled into the OR I had to leave the love of my life behind with no idea how or what the future held for our son. We loved him so much but had never met him. He was too soon!!! As I moved onto the operating table from my bed I had another contraction. Up till this point I had no pain medication. The anesthesiologist decided that I had had enough and didn’t even wait to start putting me under. The last thing I remember was them draping my belly.

Waking up I immediately asked for Dallas and they let him in and he told me that they were working on him and that he had seen him and that he was alive. Dallas had been watching them do CPR on our little son. I then went back to sleep. On the way back to my room I remember being wheeled past my parents and everyone telling me that he was beautiful. They were going to let me see him before they took him to LDS or PCMC. They wheeled him into my room. I couldn't really see him because I had to take my contacts out to have surgery. But Dallas gave him a blessing and I KNEW that we would be okay.

That day our family would be started that day.

Tyler Kenneth Brown, my sweet, amazing and miracle son was born at 1:24 AM on September 21st 2005. He weighed 1 lb 11oz. He was 13 inches long. He was life flighted by helicopter to LDS hospital where he would stay for 30 days. He would have one surgery, and suffer from grade 3 and 4 brain bleeds. He was transferred to have a reservoir placed for Hydrocephalus. He would stay at PCMC for 63 days. He would endure 2 more surgeries( reservoir placement and ROP stage 3) and many ups and downs. He came home one day before his due date…. December 23, 2005.

Happy Birthday... Just kidding - Actually shriners CP clinic

Shriner's clinic was today. I have not ever been through the whole CP clinic meaning we see EVERYONE and their dog. But it was nice to get some good information and see Tyler's team of docs working, whispering, comparing and the ultimately turning to me and saying OK mom... give us your thoughts.

We have had a soft diagnosis for Cerebral Palsy for a few years now. Obviously he has cerebral palsy but we have not really had anyone talk to us about it. There are a million different " kinds" ( OK not really a million but more than one) and sometimes the more you know of the kind you have the better you can control, maintain and rehabilitate. Because we were not born in Arizona we didn't have the follow up program there with a developmental pediatrician and a few other docs that seemed to diagnosis a little earlier than we got. And being that we were born in Utah we were no longer eligible for neonatal follow up.

While I don't think a earlier diagnosis would have mattered getting information NOW and finding more and more things to benefit Tyler is what we need to do. At our appointment I had 3 docs at my disposal to ask as many questions as I could think of right then.

At the Clinic we see a orthopedic doc. We saw a resident first and he came in and nicely tried to get Tyler to coperate. He was looking to see just what muscles in his calfs and hamstrings are misfiring and if there is anything we can do or need to do soon on his orthopedic problem on his feet and toes.

It seems that Ty has more of a problem in his Gastroc muscles in his legs. Once pressure is relieeved his movement is less impaired. Of course taking away that muscle is not possible we need to find ways to lessen the spasticity of it. We have been doing that with Botox and with Therapy and stretching at home.

Orthopedics are looking at just having him wear his SMO's for awhile and not the AFO part of his braces in hopes of keeping him mobile and not impairing his mobility.

As a finally suggestion orthopedics is looking at doing a gait study to see what input we can get from his muscles and movement to better improve his gait. This won't happen for a few more months as they want to see if he can "age" a little more cognitively so he will follow directions a little better along with not getting so upset when they touch him.

Our rehab doc came in with orthopedics and we talked with her a little bit. Dr. Gooch is a little cold at first but she came in and I was able to talk to her a little bit and she provided a great deal of insight into Tyler and cerebral palsy in general ( at lest HIS type)

So Ty is considered having Spastic Diplegia Cerebral palsy. It is most commonly found in babies with PVL or brain damage caused at birth ( right before birth, or from a oxygen deprivation at some point in the birthing process) Ty has PVL and we have known about it since he was in the NICU. Some neonatologist refer to it at "cystic changes" in the brain. They showed up with his brain ultrasounds after his grade 3 and 4 IVH "resolved." It is usually a precursor to Cerebral palsy. Also this type of damage, Tyler is at risk for seizures. If he can make it to age 5 without one we are looking at a relatively LARGE breathe of fresh air.

Dr. Gooch is impressed with his Botox but they are noticing that at the end of his cycle he is pretty tight. Between her and ortho they would like a few sessions of physical therapy, possible round of botox and in December we are looking at being admitted to Shriner's and Phenyl injections in his gastroc muscles. Last year they were looking at doing a phenyl block but decided to do botox instead. This time they want it in his leg muscles ( which makes me much happier) and we are hoping it works better.

They decided to invite in Dr. Samson Fang. While I know lots that love her she kinda rubbed me the wrong way. I kind of felt like I was being talked down to yet I already had all the therapies set up, the docs we see etc. So all the info that she offered was already done. Minus she did offer to give me the name of a social worker for medicaid D.

Dr. Gooch and Dr. Carol got us on the therapy list up at Shriner's, so although it is a trek to get there it does give us PT, OT and Speech. That makes me feel just a little bit better. If we do get medicaid D we can get some of that therapy a little closer to home.

We were able to get an appointment with Orthotics and our evaluations are all set up.

I am so thankful for Shriner's and for those that donate to the wonderful hospitals and care they give. Not many places are free and that the medical care is above and beyond anything we have ever experienced. What great people there.

It was a great consult. I didn't leave upset, angry or frustrated. I felt I was talked to, informed and most of all that they cared about Tyler and his care.

Bugs Tag

My High School friend ( who looks amazing after just having a baby) tagged me for this bugged tag. I was wondering if I could really just narrow it down to JUST ten.

1. I get so mad when people don't come to work when they are suppose to. I know EVERYONE calls in at some point but man come on EVERY weekend.

2. I hate when people gossip. Like really gossip. Like get in your life and totally mess it up gossip.

3. I am bugged that I still listen to grunting, and non verbal communication. I sometimes feel like others think it is my "fault" and I hate it.

4. I hate that some people can't let things go and let people "change." It does happen and if you allow them to change you might find you LIKE THEM!

5. I hate mean people. Seriously, is it that hard to be nice to others. Like don't walk into place ( like say.. a walmart) and be mean to the person checking out your groceries. Its their job and they don't make a million dollars.

6. I hate when someone asks whats wrong with Ty and they follow up by, "man I am sorry. You must be really blessed." Um. no.. he got really screwed. It isn't his fault and he didn't ask for this to happen and life will be really really HARD for him. and thanks to #'s 4,5,6 his life will kinda suck. But thanks for the sympathy... I am glad I have the blessing :)

7. I hate when people who visit my blog or others for that matter never leave comments. I mean come on most of us have site meters. We know you are here. Say Hi

8. meal time. It is such a chore to get Ty to eat. I am bugged by those people who have hugely fat children when mine wont even eat a donut.

9. Loud pets. Keep you dog quiet. I obviously don't have one for a reason

10. When you have a kid at 33 weeks and older, parents of "micro" babies don't really look at that as early. No offense but as you get older than that... especially 34 weeks.. its not a preemie. Not even close.

I tag, Jenn K, Nicky, mom, Chantel, Crystal, Jenn Tippets, Erin B, Jayley, Burkie and Tammy

Thank Michelle!

The do's and Don'ts

Last year during our prematurity awareness month I posted a few do's and don'ts and got a lot of laughs and comments so I thought I would share for those newly googling NICU parents.

First the Do's

1. Ask me what I want to be called.I may or may not want to be called "mom." I would like to be called by my first name.

2. Send me a Polaroid of my baby when I can't get out of bed because I have had a C-section OR take pictures when I am not able to be there. For Tyler we had a disposable camera in his drawer all the time. LDS NICU also took pictures of them when we were gone.

3. When referring to my baby, please don't call him "your baby" (as if he is your baby) or "the baby." He is your patient, but he is my baby. The best possible way to refer to my baby is by calling him by his first name. ( this was huge. The Nurses would get use to having Ty..But he was still MINE!!)

4.Give me a tour of the nursery soon after I arrive so I know where the pumping room is, where to store breast milk, the lounge, bathroom, etc. (Remember if I am groggy or having a difficult time coping, I might need a second tour later.)

5. If you are the nurse caring for my baby, acknowledge me when I come in the room so I know who you are.

And some DON'Ts....

1.Don't Call me "Mom." Please ask me what I would prefer to be called. ( I didn't care so much about this one. I had Primary nurses that I just loved and they knew me after a day or two...but for some .. I am sure it was an issue.)

2.Don't Move the baby without telling me ahead of time, or at least meeting me at the door. ( when you get into the habit of having them in one spot going in and seeing your baby not in your spot is a little overwhelming. Ty was "kicked" out of his corner it was REALLY kinda nerve wrecking. Change during that time was SO hard.


3.Don't Tell me how I should be feeling or that I "need to be patient." Even now hearing that it is "normal" is hard to hear. It is something we are dealing with. Not you. You have NO idea how I feel.

4.Don't dismiss or diminish my concerns. I am not used to seeing my baby have bradycardias or color changes. Having a sick baby was so different. You can't touch them or love on them like a healthy baby. Holding took a long time and he was sick. On some days he was sicker than others but he is my baby.

5. Don't assume that I don't care for or love my baby if I don't touch him. I may be very scared or overwhelmed. The first time I saw Ty I wanted to touch him but I remember being told not to rub. There were days when I was told not to touch him. But there were days I couldn't touch him. I was sad. I was scared. He was so precious but still so sick.

*These were some things we had posted on his incubator. I am sure they weren't read but I wanted them there. I wanted them to know that I had feelings and that things did effect me.

October 12th 2005- The best day ever

The NICU was not always just bad. There were good times as well. It was a roller coaster but with all rides there are times that you remember even more than the bad. For all of the ride I wrote them down. Sometimes as you read the bad the good come back, in a flood of memories. It is THOSE memories that make me smile. That make me proud to be Ty's mom.

On October 12th I was given an amazing memory. I was able to hold my sweet little baby for the first time. Given all that he had already been through and all that was beginning to happen and all the unknown to sit there and hold my sweet little boy was more than what I needed at the time.

The day before we were all ready to hold him but we were ushered out because another baby was coming in. We were already to do it and they wouldn't let me. I was so upset. With all the NICU hormones and all the pregnant hormones I started to cry. I ran out of the NICU in tears. I was so angry that I couldn't hold my baby.

The next day we came in and we were moved out of our spot and 2 more babies came in. The one from the night that I couldn't hold him and another baby. So here we were waiting to hold him.

The nurse and respiratory therapist were a little apprehensive to let us hold him because he was still on a vent. They had to bag him because he needed to be off his vent. We got all set up and we they put him in my arms. It was amazing.

He loved it and he did really well. They had to keep him warm by warm blankets. Dallas and I both got to hold him. We weren't sure when we would get to do it again.

That day is a day that I close my eyes and remember EVERYTHING that happened that night. Everything I felt and everything ounce of love that I felt that day with that one pound bundle in my arms.

ARE YOU FREAKING KIDDING ME??????????

I am so mad! That trip to AVONHELL!! Gotta go back.

I am trying to work on some personal boundaries with my mom and get a guilt trip instead. Seriously... Stop.. I cannot deal with it any more!


Any of it!!!!!

National Preemie Day

In a stunning movement the Niagara falls was lit up in honor of some of the Nations smallest citizens. All across the country blue and pink lights showed the nation that preemies are not just little babies. The causes and effects of prematurity are not always known but these little babies are some of the worlds toughest fighters.

With the most absolute awe I looked into the eyes of my little man today with such gratitude. I honestly can't describe the feelings of awe that I have for him. He is such a fighter. He is so cute and so loving. He is so special. He is an elite kind of child. Only 400 of these "kind" come into the nation each year. He is a hero.

Despite all the down times and the busy times and the overwhelming times, I am so amazed at all the things that he does EVERY SINGLE DAY. There are so many things that I can't imagine changing.

The true story of prematurity can't be written in any newspaper or in any magazine or on any website. The story is written on the faces of thousands of moms and dads sitting alone in the NICU, at PT appointments, and other random specialist appointments. It is written by the struggles that they face in school or in the community. It is written by the milestones they hit and the stepping stones they hit. The story is written by those that live it.


As preemie parents we are proud of all that our children have accomplished. We are proud of the things that they do. We are so proud to have them as our children and we are in love with the very things that make them special....that make them different.

I love my Preemie.

I am a proud mom of an amazing, beautiful 25 weeker.

I am the PROUD MOM OF TYLER.

"To realize the value of one month, ask a mother who has given birth to a premature Infant

I LOVED the comments on the last post. I think we could do a whole other one with EVERYONE contributing the NICU humor. It feels like dark humor but it is true!( and it gets us through a day!!)

One of the things I have wanted to discuss got pretty heated on one of the blogs I read. So I would like to take some times and just let Stacy know how much her and Helen have done to help me realize just what I can accomplish.

Me and Dallas were discussing the night that we had a nurse practitioner take us in the parent room and talk to us about continuing care of Tyler. Tyler had just been diagnosed with his grade 3 and 4 bleed. He was having a tough day. I don't remember how long in between his surgery and this conversation took place. But I remember the conversation.

During this time it seemed that the roller coaster was a little to fast for one or the other of us. Either I was having a bad day or Dallas was. This particular day it was Dallas. But this nurse practitioner took us and talked to us. She said at this point that Tyler would be the one to make the decision and we would just have to listen to him. She told us many options and that he would get sicker and the vent would be on the highest settings and the odds in his favor would go down and then we knew we what we needed to do OR he would be sick and he would get better and continue to do well and the odds in his favor would go up. Then we would know that is what we would do.

We obviously know how the odds went at this point. I am so glad we had someone take us and talk to us about the situation we were in. We were informed that the grade of the bleeds would leave us with options that may not be pretty or they could be not so bad. At the time I remember us joking about a wheelchair and we would "pimp" it out and be OK and we would take what we got. I am not so sure I was fully aware of the emotional impact of what journey we were on.

I found Stacy after a particularly trying time. She was given to me from my Twin in Missouri, and a preemie mom. Wendi has twin girls born at a much later gestation than Ty and they have not many lasting issues from their early birth. She gave me the link to Stacy. Since then I truly feel like I have found a place that "gets me."

The Preemie experiment has helped me "pull my head out of the sand" and face the reality of what I know we will have. I do still hear the resounding words of the NICU that he will catch up by 2. But... September 21st came and went and we didn't wake up "caught up!!" December 24th is coming quickly and I have faced the reality that we won't be waking up on that morning "caught up" either.

In fact I have accepted the fact that I will, at any given time, be able to handle all that I need to because there are others that are out there that have shown me that they probably won't catch up but here is what we do know.

When I saw Tyler walk independently with no issues and just GO on his own I would have paid cash for that walker. I have changed my ideas of what is "normal" or even "average." I have accepted that I will do all I can to make his life easier.

Parenting Tyler is just that, Parenting Tyler. I am parenting a Preemie. I am parenting a preemie in a world that uses the media's idea of what a preemie is. That's OK. No one wants to read the half "miracles" that come from these media reports. No one wants to read they ended up with CP, or blind or deaf from the lengths the docs went to save their live. But to truly believe that a 22, 23, 24 and 25 weeker go with no repercussions is crazy. They may be small but they are still something.

Parenting Tyler is a joy. Parenting Tyler is exhausting, it is marvelous and wonderful and emotionally draining. I don't know if it is the same for EVERY parent but I know that for me I have needed people like Stacy and Helen to tell me that it is different with a full term child but what you are doing is great and it is OK to know that there will be issues.

So....with that Prematurity is not just having a little baby. It is having a life long struggle but a joy beyond belief. It is coming to the realization that it is OK to have problems. The miracle that you have is just that. It may be the media's version of a half miracle but you know that small morsel of food or the two steps is a miracle to you.


This journey changes who you are.


You do realize the value of one month. You realize the value of a lot of things.

Thank you Stacy!!!