Tuesday, November 30, 2010

Sunday, November 28, 2010

Yum.




Baked Christmas cookies for the first time in years! Elisa enjoyed the efforts.

It was a crazy busy holiday weekend, but was very fulfilling. I'm hoping for one more great night of sleep before returning to reality tomorrow. :)

Friday, November 26, 2010

Christmas decorations

Are up!



And someone is worn out.

We were so excited to see all the lights and various decorations that grandpa had to keep bringing us back and forth between the family room and living room. We so desperately wanted to touch but we decided to let her know that looking is ok but touching is not. But we did put some baby safe ones lower so she could touch.

And not only that, but we decided to take three steps in a row on our own three different times today. We walked from the chest to grandpa, from grandpa to daddy and then from the chest to grandpa again. All of it at a time that was not when we were coaching her. She just decided to do it and did.

Now she's sleeping in my arms wayyyy before her bedtime. I'm going to have to wake her here to get her ready and I'm not sure I want to. I love these cuddle sessions. I'm afraid that they will be a thing of the past in the very near future here.

Thursday, November 25, 2010

Thanksgiving at home!

Yes! At home! We have so many things to be thankful for in our lives, but this year, I was thankful for some probably very minor things. I was thankful to be home. To sleep in my own bed. To sleep next to Andrew. To sleep with my baby down the hall in her own bed. Instead of in Arizona. In a guest bed. With my baby in the NICU.

So this year I have to say was one of the best Thanksgiving's I've ever had.

Since I am big on the compare/contrast type things, I have to do this. I know you are probably bored with it and going ok ok I get that she's bigger. But just for fun, I dug up our first family photo on Thanksgiving.



And decided it would be neat to take a picture this year. Since Elisa obviously would not fit in her first Thanksgiving onesie this year (when she swam in it last year!) I pinned it to her shirt.



We spent the day at my side of the family's and even had a very playful time with my brother's dog, Elvis. I was bit nervous at first since Elvis is a boxer and a rather large dog, but Elvis seemed to be very aware of the fact that Elisa was very little and therefore was very gentle with her. She, however, thought Elvis was just the best thing ever. She giggled and outright belly busted laughed when he came near. She loved it when he licked her fingers, but shied away when he would try to lick her face. She would always look through the room to find him, or go searching for him when she didn't see him. It was very sweet watching.

And for the last few days, Elisa has decided she did not want to crawl, but walk to where she needed to go. However, she refuses to walk without holding onto either Andrew's or my hand. If you try to sneak your hand out of hers while she's going she instantly stops and sits down, then crawls over to you, pulls up and reaches for your hand and whines until you give it back. And this is ALL she wants to do anymore. She's not interested in her toys. She just wants to explore this new world standing up.

The thing is, she is not really using us for balance. In fact, she's taking several strides with just the tips of our fingers touching. Most of the time she's just using us for confidence. So we know she can do it, but she doesn't think she can. So we thought we'd try giving her something to hold onto that wasn't us in order to hopefully show her that she can do this on her own. We caught a couple steps on video.

video

So maybe by Christmas she will realize she can do it on her own.

I'm looking forward to tomorrow and decorating the house for Christmas. I didn't get to last year so I find myself extra excited to get started this year. And the added excitement of seeing Elisa looking at all the lights and decorations. I just can't wait!

Thursday, November 18, 2010

Twins in spirit

Imagine this. Two preemies, born at almost identical weights and almost the same gestational age in two parts of the world. Their mommies form a great friendship thanks to the journeys of their preemies, both wake up on prematurity awareness day and decide to dress their preemies in purple. Little did they know they managed to pick out the exact same outfit....


Wednesday, November 17, 2010

Nov. 17 - Bloggers Unite - Blog for Preemies

What is a preemie?

Technically, a preemie is any baby born before 37 weeks gestation. If you've followed me for a while now, then you know that we have Elisa, a beautiful preemie born at 29 weeks and 1 day old last year. And at this time last year, we were just two weeks into our NICU journey. In fact, when I look back in my photo album, I see pictures such as these, taken one year ago today:





We've had a very easy journey for that of a preemie, especially for that of a preemie born as early as we were. We were never on oxygen. We never developed ROP. We've followed a pretty strong developmental curve that's rather close to our actual age instead of adjusted. Unfortunately, we probably don't lend well to really bringing awareness to preemies and the challenges they face because we were very, uniquely, healthy. If anyone were to have a preemie experience, I would want them to have mine. That being said, I would not wish this journey on anyone.

One thought that has been on my mind a lot recently, probably because we just reached that big milestone of our first birthday, is the difference a year makes. Last year, we were celebrating reaching 3 pounds. 3 pounds! Elisa was still on gavage feedings and they weren't even close to beginning oral feedings. She was still in an incubator. She was still having brady's when she tried to poop. (Although I don't think that has changed in the last year.) Even her voice didn't resemble what we had thought a newborn baby would sound like. We likened it to a cat mewling. I dredged up this old video from when we gave her one of her first baths and she was just lounging around and soaking.


video

Elisa continues to amaze us and bless our lives with her amazing tenacity and good spirits. Just today, I was able to watch her as she held her own conversation with, well, who knows what.

video

So I may not have much to offer in terms of advice. I don't have a scary story to tell. But one thing I do remember well about my journey with a preemie was the lack of "success" stories. Those preemies who survived the NICU and not only survived but thrived. So what I have to offer is that. Hope. A success story.

So if you are a new preemie mom, and you've stumbled onto my blog, I have a few things I want to say. The first is, congratulations! You have entered a whole new world. It's a scary world but it's also a challenging and sometimes exciting world. You learn things about your child that you never thought you'd learn. Like how amazing they are. How strong they are. How much of a survivor they are. And just how much they can and do over come. The second is that old cliche of "this too, shall pass." And it does. Don't give up hope during those long days spent with your child in the NICU. It may seem at times like you will never come home. Those times when your child is stable and just needs to eat and grow and maintain their temperature but despite your best efforts just doesn't make any progress. It feels like forever. But they do come home. And not only do they come home, but they can, and do, thrive. Being a preemie does not define your child's life. But it is a symbol of their unbelieveable strength and perseverance.

I've met many preemies through my own preemie experience and I love them all. They all have their own challenges and they all have overcome some significant events. They all are fighters. So I want to remember all of these wonderful babies. Who, if I hadn't become a preemie mom, I never would have met. Kudos to you, my fellow preemie moms. You all are rockstars.

And now, just this amusing photo of my rockstar, loving her bottle so much that she just had to have two. At the same time.

Friday, November 12, 2010

Veggie Tales Live

So, we received an awesome opportunity that we just couldn't pass up. We were given free tickets to Veggie Tales Live last Friday, and even though Elisa is still a bit too young to really gain enjoyment from it, we decided to go. So I did a rare thing. I asked for a day off just because. And I tried not to feel guilty. And I had a blast!

(forgive the graininess of these images. I forgot my camera and only had my cell phone. And, well, it takes horrible pictures)





E got into it for a little bit. She even sang and danced for a few songs. But then she decided to just sit back, relax and enjoy the show.



I really think she was just tired but didn't want to sleep.

And taking the time to go see it was so worth it. Andrew and I enjoyed ourselves as well, but being able to spend some extra time with this little person just made it all that much sweeter.

Thursday, November 11, 2010

Meet Addyson

Continuing the prematurity awareness theme, the March of Dimes posted this video on their facebook and it really hit home. It brought back ALL those memories of the NICU. And surprisingly they weren't bad memories. But anyway, I wanted to share these with you because I haven't found a video or show yet that portrayed what life was like for Elisa and I all those long weeks a year ago. This one does.



And here is the second video in the series. On bonding. This one actually got me close to crying. This is EXACTLY how I felt when she was first born.

Wednesday, November 10, 2010

Prematurity Awareness Month

A lot of my preemie mom friends have been posting preemie stats on their facebook pages. I've not really been able to keep up with this, but thought I would post some of these stats here:

  • 1 in 8 babies are born premature (born before 37 weeks). That’s 543,000 babies per year. 5000 never make it home.
  • Premature birth is the #1 killer of newborn infants.
  • More than 70% of premature babies are born between 34 and 36 weeks gestation, 12% are born between 32-33 weeks, 10% are born between 28-31 weeks and 6% at less than 28 weeks gestation.
  • The first "NICU-like" units were designed more as circus shows. Martin Couney, the man who brought them to the United States, called them "child hatcheries." These were shown at commercial exhibitions, complete with babies inside, until the mid 1940s. Soon after, the first hospital NICU opened. Unconventional, but I guess I owe a lot to him!
  • The NICU did not exist until the early 1960s and the specialty of neonatology did not begin until the 1970s. These special units were established soon after the death of President John F. Kennedy's newborn son, who died of respiratory distress and immature lungs. He was born at t...hirty-four weeks gestation.
  • Did you know that Stevie Wonder was born premature and NOT blind? Because he was given high levels of oxygen to sustain his life, he developed ROP, or Retinopathy of Prematurity. Very premature babies don't have properly formed blood vessels in the retina and sudden exposure to oxygen is believed to cut off further blood vessel formation.
  • What do these people have in common:
  • Albert Einstein, Mark Twain, Napoleon Bonaparte, Stevie Wonder, Sir Winston Churchill and Ana Pavlova? They were ALL born premature! Preemies turn out to be all shapes and sizes, but one thing is for certain - premature children are continuously growing up and going on to make history in all aspects of our world.
  • There are 3 birth weight categories for preemies. An ELBW (Extremely low birth weight) baby weighs between 500-1000 grams. A VLBW (Very low birth weight) baby weighs between 1000-1500 grams and a LBW (Low birth weight) baby weighs between 1500-2000 grams. Elisa weighed 1265 grams at birth and falls in the VLBW category.
  • Kangaroo Care Therapy was developed in South America. It began when sick, premature babies were given back to their moms to spend their final moments because there was nothing left to do. They found that those babies were able to "bounce ...back" from the skin-to-skin c...ontact that helped to regulate their temperature, slow their heart rates, and improve respiration
  • Just because a mom has a preemie does NOT mean she did something unhealthy during her pregnancy! Many preemies are born without a cause and dr's never find out why. Being a preemie mom does NOT make you a bad mommy.

Monday, November 8, 2010

Welcome to the "other" world Mommy.

I found this on another preemie mom's blog and thought it was beautiful and sums things up very well. It also fit into this months prematurity awareness theme:

When they are born, no one offers congratulations. No one calls. No one knows quite what to say. It's as if there was a death in the family, the death of someone they all knew about but hadn't seen in a number of years. A few days later, after the critical time of knowing whether the child would live or die had passed, the calls come. Still no congratulations. Instead, they are "status" calls. "How is she doing?" "What do the doctors say?" They listen but I'm not sure they understand.



Because you are now the mother of a premature baby. Your child has been in the NICU for such a short time, but you already speak the language. Your dialogue is peppered with terms like bradys, desats, bili levels, IVHs, and Hyper L. The nurses have taught you well because you now understand the terms, roughly what they mean and the general impact of these terms on your child's condition. You know how to touch your child, how long to scrub for, and where to find the tissues. You have been introduced to the pumping room, the protocol involved with the collection of your milk, and how to treat all your equipment. You are fragrance free for your preemie, going so far as to wash clothes in baby detergent and rinse with vinegar. And you now awake every three hours and think of your little one as you hook up the horns for the routine pumping session.

You have changed. You have somehow left being a normal person and are now an "other". And you stand in your "otherness" with solidarity. After all, your preemie is an "other" too. And all those other parents and preemies in the NICU, all "others" in their own lives, are just like you. You belong.

You didn't want to belong. If there was some way to get out of this, some bargain to make with God, you tried it. You pled with the doctors to just postpone matters until tomorrow, because every little day counted. You listened to the preemie statistics as presented by the neonatologist and you still wanted, believed, your child would succeed at graduating from the NICU earlier than they predicted. Someone else's child will be there that long, your's will come home next week.

And then reality sets in. Nurses and doctors alike keep iterating the same tired lines. "Look for her to come home around her due date." "One step forward, two steps backward." "It's a preemie thing." Some were callous, careless with words. They hurt. Others propped you up when you felt like you couldn't take it. They hugged, they handed over tissues as you cried, happy or sad. One made you feel golden when it was the day to start Kangarooing your little one. She carefully, tenderly placed your itsy bitsy child in your trembling arms, patted you on the back as you asked "Am I doing this right?" and guided you in your first holding session. She took your picture together, the first Mommy and baby picture. But you were still there.

Weeks passed. You were in a routine. You knew the ins and outs of the place, the nurses you liked and the nurses who treated your child well (and you knew already that those categories were not necessarily filled by the same people), and when that nice doctor would be back in. You knew to disdain the residents since they were not there for the babies (it's just a stop in their rotation). You knew the best times to find an open pump, when the cafeteria closed, and exactly how many CCs your child needed each feeding. You made midnight calls. Two a.m. calls. Four a.m. calls.

People began to treat you differently, like you didn't have a child. Your friend's careless comment that at least you didn't have stretch marks stung. Your colleagues forgot your baby shower. You went back to work and tried not to think about your baby, laying there in an isolette, isolated and alone. You hurt for her to have someone else hug her when you couldn't be there. And still, time marched on.

In the beginning, the strides were huge. Your child made amazing leaps. As time went on, the milestones were fewer and farther between. They were no longer big elements, now they were finely tuned aspects, like weaning down the vapotherm or having no aspirates.

While the nurses and doctors counted days of life, you counted in weeks. It was more manageable that way. You ignored the omnipresent due date and tried to reassure yourself she would come home earlier than that.

And at some point, you became a regular. People were tired of you. You were tired of them. All you wanted was your baby, then. You felt like they were keeping her hostage. You just wanted to take her home so you could be together, alone, with no one else hugging her but you, no one judging your parenting skills, no one eavesdropping on your whispered conversations with your child.

But she stayed. A hiccup arrived, an itsy bitsy little thing in this vast continuum. You inquired about it but were rebuffed. You inquired again, and got rebuffed again. It became more important because no one could answer the question, no matter who you asked. And this itsy bitsy grew into your mountain. It was a developmental thing compounded with a real medical concern compounded with medical nonchalance. And your child who had sailed through the NICU was suddenly still there, still attached to monitors, a newborn in size and age but not developing the skills to be able to leave. And she was unable to develop the skills because the situation and protocols would not allow her to do so. At some point, your tiny voice became a loud, raving Mother -- and you fought for your child. Was it the right thing to do? Who knows? -- but you do, you know. Of course it was your job to fight for her, to call the doctor on the carpet for not noticing this issue. It didn't make any friends, but you fought for her. And through all the problem solving, a solution was found. It wasn't the complete understanding of where your preemie was medically (that would come later with a specialist, a specialist who was never consulted regarding your child while in the NICU, even though it would have been an easy phone call to make), but it was enough to allow her to come home.

And she did. In a rush. One days' notice. She came home on a wing and a prayer, during a fortuitous good spell regarding his medical issue. Finally, long past her due date, she was finally home. She was held by Mom, Grandma and Grandpa, Aunt, Uncle, and Cousin. She saw her house, heard her cats, slept while Grandpa drilled and hammered. She snuggled with Grandma watching Seinfeld. She felt cat whiskers and knew her friends. She was home, where Mommy had wanted her ever so long.

And you began the next chapter, life after the NICU with your preemie. Welcome to the "other" world, Mommy.

Saturday, November 6, 2010

"Normal" baby

Define this. What is a "normal" baby?



For us, this was "normal." What does it mean to have a baby and leave the hospital a few days later? We don't know. We know wires, and tubes, and IV's in our head. We know a baby who struggled and fought to live long before she was supposed to.

This morning, I was doing my normal morning read through of all the blogs I follow and found myself almost offended. One mom who had a micro-preemie (25 weeker) was asked again when her baby will be a "normal" baby.

And it angered me that she was asked that. Her child is doing beautifully for what she had to go through in the beginning of her life. And it got me thinking. When did the skills of our children become a competition? The concept of these milestones, that are drilled into many new parents, but that are pushed even harder onto preemie parents. They have there good points, in that they can help us know when a child will need some extra help. But it just seems like it's become some sort of "bragging" point for many.

I can't say I'm immune. I've rejoiced when Elisa has met and exceeded a milestone on actual age. And I've lamented and been "embarrassed" when she's fallen far behind.

And this preemie mom's response to the question when posed to her was "I don't know, I just accept her for who she is." Wow, what a beautiful response. And isn't that where we all should be? I know I've made some strides in this. I can't tell you anymore where on the adjusted vs actual age scale Elisa is. And to be honest, I don't care. She's healthy. She's making progress. She's mine and she's perfect just the way she is.

Thursday, November 4, 2010

Just so cute


It was a somewhat chilly but gorgeous sunny day today, so daddy took E out side to roam a bit. And she was just so cute in her winter coat and hat.

And you know what's kinda funny is that is a 3 mo hat....I dug it out of our storage bin of clothes from last winter. But it fit lol. I think it's a big 3 mo hat...

And thanks for the comments. I'm feeling much better today. I think I was just disappointed that she wasn't closer to 20 lbs. I had gotten so used to her putting on 1.5 lbs a month that to only get 12 oz was, well, a kick in the gut. I have to just re-visit my expectations. She's gaining well. She's healthy. She's happy. That's the important thing.

Wednesday, November 3, 2010

1 year check up

Was today.

And back to the mommy fail. But I'm sure I'll get over it.

So we are 28.5 inches tall (28th percentile), 16 lbs 15 oz (1st percentile) and head circumference of 16.1..which isn't even on the charts yet.

Sounds great, doesn't it? Almost 17 lbs, when we started out at less than 3? That's quite a gain. 14 lbs.

And it is. Doctor isn't concerned yet...but she is slightly concerned just because she's growing unequally. Her height is increasing at a faster pace than her weight. So how do you get your child to put on fat and not height lol.

Anyway, we are to continue what we are doing with her eating by alternating bottle with solids. Let her eat how much she wants. Try to get her to take the sippy but if she doesn't, just give her the bottle. No cows milk until possibly 15 months, but we will discuss that then.

Hard to figure out what to do when you aren't really a year old...but neither are you just 9.5 months. Isn't parenthood hard enough without all this added crap?

Ok, in light of my new "get out of stress" campaign....I will not let this bother me. I am not a failure. And I will move on. :)

Causes of pre-term labor

Through my experience of being a preemie mom, I have had the opportunity to meet many other moms going through the same thing. Which in many ways isn't surprising when you think about the statistics. 1 in 8 women deliver prematurely. Most women don't know why, as in my case. And many of those moms also blog. And many of them are blogging on pre-maturity based themes this month.

While reading one of my fellow preemie mom's blogs, I came across this information that she also posted:

This is from the March of Dimes:

Why Women Deliver Early

In nearly 40 percent of premature births, the cause is unknown. However, researchers have made some progress in learning the causes of prematurity. Studies suggest that there may be four main routes leading to spontaneous premature labor.

Infections/Inflammation. Studies suggest that premature labor is often triggered by the body's natural immune response to certain bacterial infections, such as those involving the genital and urinary tracts and fetal membranes. Even infections far away from the reproductive organs, such as periodontal disease, may contribute to premature delivery.

Maternal or fetal stress. Chronic psychosocial stress in the mother or physical stress (such as insufficient blood flow from the placenta) in the fetus appears to result in production of a stress-related hormone called corticotropin-releasing hormone (CRH). CRH may stimulate production of a cascade of other hormones that trigger uterine contractions and premature delivery.

Bleeding. The uterus may bleed because of problems such as placental abruption (the placenta peels away, partially or almost completely, from the uterine wall before delivery). Bleeding triggers the release of various proteins involved in blood clotting, which also appear to stimulate uterine contractions.

Stretching. The uterus may become overstretched by the presence of two or more babies, excessive amounts of amniotic fluid, or uterine or placental abnormalities, leading to the release of chemicals that stimulate uterine contractions.

These four routes are not the only things to consider. Other factors, such as multiple pregnancy, inductions and cesarean sections, can also play a role. But knowledge about these four routes may help scientists develop more effective interventions that can halt the various chemical cascades that lead to premature birth.

And, well, it seemed pretty obvious to me. Even if this isn't a medical diagnosis.

If you know me, then you know that I'm a high stress individual. It's in my DNA. It's something I have always struggled with and will probably always struggle with.

So I've recently started a "get out of stress" campaign. Hopefully this will help me to both handle my stress better...and if we are lucky enough to be blessed with more children...go full term next time.

Tuesday, November 2, 2010

Purple!

It's preemie awareness month. So in honor of this, and the many other preemies of whom I've met, and not met...this blog is going purple for the month.

I've seen many of my friends doing themes on this month...I'm not sure I have the energy to this year. But you may see several preemie themed blogs...

Thanks to Babbling Brooke for the preemie backgrounds!

Monday, November 1, 2010

The difference a year makes

Thanks to the return of winter...and a sad lack of true winter clothing for E, I spent part of my weekend searching for some more of those wonderful fleece sleepers that E lived in when she first came home last year. And I found myself thinking with a sense of nostalgia of the first one she ever wore. Her first night out of the hospital. Her first night with me.



(now this picture obviously isn't of her first night home...but the only one I could find with her in the sleeper lol)

And I found myself smiling. SMILING. And getting a little teary as I then began to think of all those cute little fleece sleepers she had. And how much fun I had picking one out for her to wear at night.

Did I turn that corner? Did making the year anniversary of her birth mean I can start now seeing all the good memories that happened a year ago instead of the terrifying ones? We haven't made it to that all important "release date". But to be honest, my NICU stay is rather a blur. And not very traumatic. I guess because I knew my ability to fight was over...and it was all on her to fight.

And fight she did.