It's a .... thing?

It's July one, which means:
1. My oldest nephew's birthday is today! Yay!
and
2. The anniversary of my niece's passing is next week. Um, big booooo.

As a result of number two AND a wicked sinus infection that required drugs upon drugs, I've been feeling a little down in the dumps. I'm tired (thank you, stupid infection), hot (thanks, summer) and agnsty. I'm not as bad as I could be, as I'm taking great care of myself, but everything's just been a little off.

Then Sunday I logged onto Facebook and checked a local preemie charity I follow. They posted a picture of a baby they are helping and he's wearing one of my hats! A hat I donated and made in memory of Miss Who! I was really excited, as I've never seen one of my donated hats on a baby before! (I've made ones for friends and seen pictures but not one I've donated to a local NICU.) It made me feel great to know they are being loved and used!

The next day, the kids and I found a ladybug in the pool. I didn't know ladybugs could swim! When I got close to scoop her out of the pool, I noticed she had alot of spots on her back and some of them were heart shaped. I called my kids over and they agreed; heart shaped spots. She was not happy that I was trying to get her out of the water and scurried around until Camille carried her off to the roses that grow in the nearby garden.

(Ladybugs are always associated with my niece. We see them randomly but always at times that are important to us, like when we did family pictures.)

Tuesday, I fired up my computer to find... and invitation to Deanna Fei's book launch. 

To say you had to peel me off the ceiling is a major understatement! I was so, so excited! I really wanted to go but was fairly sure it couldn't happen. I mean, it will be in NYC and I am so not in NYC. Besides, I don't want to travel around a major city alone... but wait.

I have cousins. Cousins who live in New York.

What happened next was a flurry of texting and calls to my husband and my cousins. My husband found out that we have enough points to get me to New York for FREE if I stay just 48 hours. My cousin is off work that week and I can stay with her. The venue is 15 minutes away from her house and she can be my plus one! I can see my grandmother! The whole trip is going to cost me time off work and food.

I'd like to say it's a God-thing. That there's a reason this random trip resulting from a random comment left on an article is happening now. Is there? Perhaps. It's so easy to say that God (or my niece) had a hand in this trip. I mean, look how everything fell into place! I don't know, though. I think God has a hand in everything and that if this trip hadn't worked out, there would be a reason for that too. (And even though it worked out, the loss of 3 days pay for me has me nervous... hello, trust.)

Maybe this trip is a God thing.
Maybe it is a Miss Who thing.
Maybe it's .... a thing.

But at the end of the day... I'M GOING TO A BOOK LAUNCH!!!

So this happened

About 18 months ago, I read an article by Deanna Fei, My Baby and AOL's Bottom Line. It's well-written and sharp but something about the author's tone made me send a message to the author.

Now, I never leave comments in the combox unless it is a blogger I know or I'm entering to win something. And I never, ever, ever message author's I don't know. ComBoxes tend to make me weep for humanity, especially when it comes to articles that might be controversial. As for e-mailing authors... eh. I leave great Amazon reviews. I tell everyone about their books. I favorite them on Goodreads. But I don't e-mail them because I don't want to seem like some pre-teen fangirl even if I am totally fangirling inside.

Yet I did. I have a vague notion of what I said, something about how she is not alone in her feelings. I e-mailed her, I received a short note in reply and that was that.

Until last week, about 18 months after I read the article. I received an e-mail from Fei thanking me for my comment and how it was one of many that inspired her to write a book, Girl In Glass (due in July) about her experiences. A few e-mails later (!!! because who am I kidding, I was sitting there with a dumb grin on my face thinking, "THIS IS SO COOL!") she told me that my initial e-mail to her is quoted in her book! It's anonymous, of course, but still!!!

Yeah, yeah, yeah. I get paid nothing. My name's not even in there. BUT. PEOPLE! A real live, honest to goodness writer- like, she's written another novel! She make a living writing!- said that something I (yeah, yeah, yeah, and others) inspired her next work. At swanky dinner parties (that I never attend), I'll be able to toss my hair, casually sip my wine and just happen to say, "You know, when I was quoted by/inspired an author..." Years from now, I'll pull the book off my shelves and show my grandchildren where I am (not) mentioned in a book.

Okay, yes, I am a complete goober. I'm aware this is interesting and super cool to only me. I am also aware that I might be mildly in awe of anyone who is published because I know how long, hard and slogging the process is. But it's funny, you know, how having a preterm infant puts everyone on equal footing: a housewife and swim coach with four children in the suburbs of the midwest suddenly has something in common with a writer in NYC, all because of an intensive care unit. I have a feeling we could sit down over tea (or KC BBQ or, even better, NY bagels piled with cream cheese or butter) and not run out of things to talk about. We have a common ground in our children, their early beginnings and our struggles. It seems we both have a passion for educating people about pre-term infants and everything that it entails, during the NICU and after.

You know what the best thing about this is, though? My words made someone feel better. I never know if reaching out to someone is going to be well received, especially when her daughter was born much earlier than my son. Yet it did and, to me, that's better than any (not) mention in a book.

Happy birthday George!

Our giant monster preemie turned SIX this morning! He started the day off with a bang, fighting with his brother over a dollar bill. No. Really.

Adam is out of town all week so we had his family party a few days early. My parents and in-laws came over for dinner, presents and cake. We had beer and cheese soup for the grown-ups, hot dogs for the kids and Minecraft cake for everyone. George got two new pairs of jammies (one with a yeti on it!), LEGO, a new shirt and a scooter. He was pretty happy and pretty spoiled!

On Sunday, Mom, Camille and I went shopping and I got some Christmas shopping done. We took my mom into Justice and I think we scarred her for life. She's still seeing neon and glitter. We picked up some take-and-bake pizzas on the way home and Adam left for the Frozen Tundra early the next morning. Mom stayed two days to help me but I am on my own today and tomorrow. (ACK!)

It's been an "all about George" week. We went to Bass Pro to look at the holiday decorations and the
fish. We went in the afternoon and the place was dead. He had free range of all the games and did really well shooting ducks with a bow and arrow. I joke that he's ready for The Hunger Games!

Tuesday was busy because it was a (damn) early release day. I had to explain pick up and drop off times to my mom 10-20 times AND write them down AND I'm still not sure how much she understood. She now full gets why I complain about those days all the time! Still, she picked up the kids at the right time and place so all was well. We hung around, made popcorn chains to hang on the tree for the birds and helped the kids with homework until I had to leave for work, Then Mom made them a full breakfast for dinner, including bacon and sausage! Nice! Our pancake loving six year old was in heaven!

Wednesday brought Grams leaving and a busy night with piano (George) and CCD (everyone). I normally leave Cole with Adam but he went with me that night. Cole actually did really well, sat nicely and listened to the story. George's CCD class is nuts, though, so it was a typically busy night. I think we all fell asleep as soon as we got home!

Today's been a "the more things change, the more they stay the same" day. Six years ago our oldest was four and a half; now, our YOUNGEST is that same age! Six years ago I read Edward's story on-line and was planning on seeing Twilight in theaters. Now, I'm reading stuff about THG on-line and going to see Mockingjay tomorrow night with some friends. I picked up turkeys for the NICU Thanksgiving today; George is the reason for the Thanksgiving. All in all, pretty cool.

His party with his friends will be Sunday (just a small, at home thing) and then Adam's brother is coming into town. Having his uncle here will be so much fun for him! I think we're going to put up Christmas decorations on Black Friday and we're going to meet some friends that Saturday. He's going to be happy and worn out!

We partied this weekend

thank you Catholic Memes on Facebook

I was anticipating this past weekend... but dreading it too. We would have so much fun stuff to do but... so.much to do! In the end, it was the perfect weekend and I couldn't have asked for a more perfect weekend.

It began with a little of this:

 Man, the frosting was pink but it was the perfect pink for our pretty pink princess. I did her hair that morning and it looked awesome. I also figured out that I am veil-deficiant. I have never worn one and wasn't sure how to pin  it to her head without drawing blood. I got it on her, though, and she looked lovely. All the children did, really. I know you sometimes see a dress and think, "What the heck were the parents thinking?" but there was none of that at her Mass.

After Mass, Adam took the little boys to baseball practice. They loved it and were properly tired when they came home. Adam said they hit the ball a few times and managed to catch it. I have no dreams of major leagues in this house. I want them to have fun, learn the game and be tired (not always in that order!). Plus, you know the "games" will be precious!

Right after they got home, we had our open house where we cut into the "rustic" cross cake:

I made marshmallow fondant. I have made this before with excellent results (see also: Cole's first birthday cake). It began coming together just fine but then I added too much of something and the result was a thick paste of .... not fondant. I asked Adam to roll it in a ball in the fridge and he didn't. It did not roll out easily or drape nicely. I didn't have any buttercream left so I put in on the cake in strips. I couldn't get the pink (PINK!) buttercream to pipe out, so Grams suggested we place the cupcakes around it to hide the edges. I joked we were going for more symbolism since Jesus was wrapped in a shroud after he died but one of my friends, "No, it's RUSTIC!" Rustic it is!

After tons of cake, more cake and yummy Subway, we watched Frozen and then hyped the kids up on more sugar....

The school carnival was perhaps the best one our school has ever hosted. The weather was perfect and everything was outside. The kids were safe to run fairly free and their tickets got them oodles of candy. All that running made them super tired and Cole asked to go to bed that night! I think we would have all slept in if it hadn't been for this the next day:

My parents and my sister's family joined us for the first time. We all walked together. It was nice to introduce my parents to the people who saved George's life and have them meet some of the children they last saw as babies in the NICU. My sister surprised me by showing us Miss Who's sign on the Boulevard of Babies.I didn't know she had one and it's nice to know that others will see her name and maybe smile.

My camera shy husband and son!
They ended up o n the hospital's FB page!
And the look like they have a bodyguard.

 In many ways, the March was a safe place for all of us. We could talk about Miss Who without having to censor ourselves. People would understand all the terms and it was highly likely no one would say stupid stuff, like "God needs her more than you." I talked to some friends from the NICU who did not know about her and we had a "there but for the grace of God so us" kinda moments. Their children were born at the same gestational age as Miss Who and knew, all too well, the fear of loosing a child. They were super sweet to us.

When we got home that afternoon the kids played with friends and I dozed. We were all soooo tired!

While I couldn't have asked for a more perfect weekend... I'm glad a break is coming! We have two weeks before another huge weekend of birthday parties, baseball and a huge garage sale!

Quick Takes Friday: We interrupt this First Communion Prep...

To bring you Quick Takes Friday and allow me something to do other than cleaning!

1. Mad, mad props to my little boys who have been drug on errands all week. They have put up with Hobby Lobby, JoAnn's (which seem to be taking a leaf of out Wal-Mart's books and never, ever have enough cashiers staffed!), Wal-Mart, Target, JoAnn's AGAIN, and the Catholic bookstore. Both boys were so well behaved and helped me pick out everything I need for our open house.

2. In a fit of ... brilliance? thinking I am crafty? insanity? I ordered the pink cupcake toppers from Pink Posy Paperie. They came out oh-so-cute and the file was easy to download and print. I adore them and we're using them for cupcake toppers and to put on treat bags.

3. Now, I thought I was being all frugal with these things. The price of the download was quite reasonable. I already have the card stock. I could have cut them out by hand but a) why? and b) friends promised me that the punch for them was reasonably priced. I'm sure this is true... if you don't have to buy TWO. The big pink flowers in the back are from the orginal punch I got. I opened it, used it and realized it wasn't what I needed. I had to go BACK to the store to get the one I did need. The four dollar cupcake toppers ended up costing me nearly $25! I really, really hope there is another occasion to use "God Bless Camille Julia" themed items!

4.I'm not sure if this is the cheapest thing I have ever done or if I was going to EPIC SYMBOLISM but I bought Easter Candy at 75 per cent off to use in the bags. I found chocolate coins, which the kids love, and placed 2-3 in each bag. I mean, if we didn't have the Eucharist, we wouldn't have Easter... or, um, vise versa. And the coins are the size of a Host! See? Not cheap at all. Right. 

5. I also have to give a shout-out to the Religious Education department. Camille was chatting about the "dress rehearsal" they did and she was making comments like, "We used the Eucharist but it wasn't the REAL Eucharist because the priest hadn't made it into God's body yet" and "They said I can take it in my hands or my tongue. Mommy, which should I do?" I'm impressed with that because few people Recieve in the mouth now so it's nice that it was presented as a viable option for the kids. I told her to do what she prefers and what is most comfortable. I think she should do what she is most comfortable with the first time but after that, she can try receiving in a different way. 

6. Oh, you want to see a pic of my daughter in her dress before the big day?

The dress and veil were actually a gift from a friend. Her mother couldn't just sell it or donate it and wanted to find a little girl who would use it. My mom did the minor alterations. We all love it because it is so pretty, so fancy but modest and very "little girl." I found her tights on sale at the Gap and her shoes came from Zulily. The Rosary was a gift from my parents when they went to Italy a few years ago. It has SAINT John Paul II and Pope Emeritus Benedict on it! The bracelt is a small gold one and each link is shaped like a bow. It was my mother's. I bought her birthstone earrings as a gift (yes, they are red) and my mom gifted her with a cross necklace. She also has a little white sweater (yep, made by Grams!) to wear.

I love that so many people donated time and gifts to her special outfit. It really makes it even more special, don't you think?

7. Sunday is also the March for Babies. This year, my parents and my sister's family will be joining us. I am a little emotional about it but I'm reminding myself of all the GOOD things that have come from our time in the NICU. I mean, I would do nearly ANYTHING to bring my niece back but... at least good came come out of bad! But I suppose that is a post for another time.

Have a wonderful weekend and please keep my daughter, and the other kids receiving their FHC, in your prayers!

Five Years Old: A Letter

Five years.

In some way, this feels like a major milestone, just as big as your first birthday. Five years. Half a decade. You are five years old.

Five.

There's so much a five year old can do. Five year olds aren't preschoolers anymore. They're... kids. Just kids. They go to kindergarten. They ride bikes and play with big kid toys, like Power Rangers and Lego. Not Duplo. No, you don't want the "big Lego." You want the "little Lego, like Joe."

Five years.

How has five years gone by? Aren't you still my little bald baby who asks for his "ba" and does a silly little dance when he wants it? Don't you still have chunky monkey legs and fat little wrists?

Everyone considers their children a miracle and, to some degree, everyone is right. But you are so much more a miracle. Not a day goes by that I don't think of prematurity or your NICU stay. I'm reminded, in the conversations I have and the work I do, that you were born with lungs unable to keep you alive without help.  Sometimes, I still listen to you breath and marvel at the miracle of every easy, unaided breath you take.

Five . . .

If someone had told me five years ago what would have happened this year, I would have laughed... and then punched them in the face. I never, ever thought that our family would walk the NICU path again. I never thought any of us would go through what we did. But, we did. We have. And because of you, we had the strength and knowledge to muscle through that hard path. Because of you, we loved with wild abandon. We knew the questions to ask, the answers to seek and the hope of what might (what we wanted) to come.

That was your gift to your cousin.

... Years

I wonder who you will be five years from now, when you are ten. A decade. I don't think too much of it, though, my sweet five year old. I want to love an savor each moment of you, right now, my sweet puddinpie. I love your laugh, how your "s" becomes "f" and how you call yourself "Forge." I love how everything is "nine": Nine more minutes Mom! You are popular at school; I can't tell you how many times someone has said, "Oh, you're George's mom! My kid talks about him all the time!" You love Bigfoot and Lego and Power Rangers.

Five Years Old

Saturday will be your first big birthday party. It speaks volumes to how far you have come that we could even think of having this party- 30 kids in a TKD studio smack at the beginning of cold and flu season. Germ and sensory overload and yet you are so looking forward to it! Who woulda thought? You have come so, so far!

I look forward to seeing how much farther you have to go and what you will do with the life you have been gifted with. You are five years old George David and you are as much of a miracle now as you were then. We love you.

NICU Reunion, 2013

I don't get it anymore

Maybe it's envy, a sin our priest cautioned against in his homily during Mass on Sunday.

Heck, whatever, I know it's envy.

And anger.

And confusion.

At this stage in my life, the "friend's having babies" thing is starting to wind down. Sure, being Catholic, I still know people having babies but most of my super close friends are "open but not hopin'." Even if they desire more, we're at the point in our life where we have the baby thing down. Breast or bottle feeding debates aren't on our radar; we've made our "baby choices," we know how to parent that stage. We're more worried about the tween years.

Yet, still, I have friends whose feeds are full of ultrasounds and car seats and newborn clothes. The other day, I saw pictures of the car seat some friends will use, God willing, when they bring their son home from the hospital.

The kicker? She's 22 weeks pregnant.

Twenty-two.

At one time, I suppose as a first time mother, I would have made that choice. I would be looking at car seats and wanting one rightnow because OMGosh I only have nine months to get ready for this baby and nine months isn't very long and what if I made the wrong choice and will they have the color I want and what if my baby has to come home in a car seat that is the wrong color? But this isn't their first baby or even their second. I find it. . .  odd. Because if I were to be 22 weeks pregnant right now, I wouldn't have an infant car seat in the house. I wouldn't even be looking for one. I'd be praying, praying, praying for many more months of pregnancy.

I'm too wary now.

At one time, maybe I could do it. At one time, maybe I could have my child's car seat purchased and waiting before I hit viability. At one time, maybe I could. By Cole's pregnancy, I couldn't.

In some ways, I didn't have to purchase anything. 16 months between births gave me a good "out." We had a perfectly good, non-expired car seat waiting in the basement. We had a bouncey and a Bumbo. The baby toys were still in use and the newborn diapers hadn't been packed far away.

Yet, I couldn't. I couldn't have too much laying around the house, staring at me, mocking me for daring to hope. It was such a delicate balance. How much did I need to get ready? How much did I want to do? And how much could I stand to look at if (Please, God, no) my child was born early?

Prematurity was a very real possibility. Thanks to George (and I mean that in the best way, not the most sarcastic), I had friends with extremely pre-term infants. Infant loss wasn't something that happened to random strangers, it happened to people I loved. I'd seen codes and tears and too much sorrow (and yet, so much joy) to get ready too soon.

Instead, I did everything in stages. I washed tiny preemie clothes, knowing that, well, at this stage, he would need clothes even though he would be in the hospital. I rearranged the boys room early- but not too early. I wanted George to get used to the new room before the baby came but not so early that I would burst into hysterical tears every time I walked into it. I installed the car seat 37 weeks. Everything was a balance, the balance of a mother who knew- and was terrified- of the other side.

Although Cole was healthy and term, if I had a fifth, I couldn't do it. I couldn't buy a car seat at 22 weeks. I might buy a blanket in case of an emergency baptism, just so there would be something white to put over the baby. I know I would have Holy Water on hand. I know we would have a name. Everything else could wait.

Do I envy those parents who, even on their second, third or twelfth child, can buy a car seat at 22 weeks? Yes. I don't envy them for their child or their life. I envy their innocence and wish I could go back to a time when fear (what if... what if... what if...) and anxiety didn't surround a pregnancy.

I wish I could go back to a time when there was only joy.

Flashback: PSTD, the NICU and Control

If  you've read this blog for more than two seconds, you know that I suffer from PTSD related to my son's early birth and NICU stay. While his stay was shorter than some, and he is healthy overall, the birth and aftermath left me emotionally scarred for a very long time. The link below links to an old blog post from June of 2010. George was 19 months old, Cole was two months and I was still having dreams.

The good news? I am so much better than I was. SO MUCH. When my niece was born in April, I was able to walk into her room.  All I saw was a lovely little lady, my sweet Miss Who and all the things that made her Miss Who. Clinically, you can go on-line and read about what a micro-preemie looks like. I didn't see that. I saw her big hands and feet, her tiny cow lick and how she loved to hold her mama's hand. There were no overwhelming memories. No dreams. No huge, sobbing tears. The PTSD beast did not rear its head.

Unless you have been there, you have no idea how huge this is for me. Huge. And throughout the entire NICU journey my sister went on, I didn't have one knee-buckling flashback. Not one and I spent enough time in her room that I should have. I should have been on my knees, sobbing at the memories and I didn't.

Will this happen for everyone? I don't know. I can't promise that. It was a long slogging road and I won't consider myself healed. I do consider myself better, stronger and healing.

I can't promise that anyone will be able to walk back into a NICU room after having their own NICU baby. I can't promise you will be able to do what I did. But I can promise that, with the proper help and time, it will get a bit better. Easier. Healing.

Flashback: Trigger Control

Questions without answers

There are questions children ask that need answers but have none.

Why I born early?

Babies float in a big swimming pool of water. Your swimming pool broke and the doctors took you out because they were afraid you would get sick inside of Mommy.

I sick?

No, you weren’t sick. We were afraid you would get sick.

I had owe in my nose.

Yes,  you had a tube in your nose to feed you and a tube in your mouth to breathe.

Like Baby Who.

Yes, like your cousin.

George’s birth story is important because it is his story, the way he entered this world. It’s important to know not only because of this, but because his start in life is part of his health history. For years, people will ask me if there were complications with his birth and pregnancy and he will have heard the same answers over and over again: PPROM, RDS, the vent, the oral issues. One day, he will have to take charge of his own health and he will have to answer these questions for himself.

I rejoice that my son has his own voice and is able to ask these questions on his own. He has the questions and I should have the answers.

I don't, though.

I can tell him scientifically, why. I can tell him what the doctors told me. I can tell him about the wonderful people we have met, the gifts we have been given, the joy that has come with his journey.

But I don't know why.

I don't know why him.

I don't know why us.

Most of the time, I trust. Most of the time . . . I wish I knew why.

And we Marched.

April has been both the longest and slowest, most joyous and most sad and stress filled month of 2013.

(Dear God, please note this is no ta challenge. We're cool with this; no need to try and top it!)

As I wrote before my uncle passed away on April first. I was able to fly in for his memorial, see family and reconnect, all while celebrating a man who loved and lived life to the fullest.

48 hours after getting home, I got a phone call that someone we love was on hospital bed rest. She was dilating much too soon and the doctors were working hard to keep the baby in. The baby, now nicknamed Miss Who, had other plans and she was born in the wee hours of April 13. (Yes, she shares a birthday with Joseph!) Once again, I found myself on a plane and by noon, I was in her town, visiting her family. By two, I was allowed to see the baby and being one of the first people to see little Miss Who on her birthday will forever be one of my most cherished memories.

I spent most of April traveling, celebrating both Cole and Joseph's birthdays from afar. I know they missed me but I also know they understood why I had to leave. Joseph was thrilled Miss Who shares his birthday, although he knows the complications of prematurity all too well. When I told him the baby was born, joy fitted over his face, but it was soon followed by tears when he remembered when the baby was due.

It is because of this knowledge that I did this one Sunday:

 

We have walked in the March of Dimes March for Babies every year since 2009. The first year, we walked alone. The second year, we were surrounded by friends from our NICU, with our new little son in tow (Cole). This year, I just took the littles, as the older ones were at a camp out but it was still meaningful and special. We not only walked for George but for Miss Who.

 

In 2009, George was only six months old. I felt like we half didn't belong, as he was big and doing so well. I was still so terrified of the future, unable to hope that my son would ever be as strong as the kids who ran around wearing shirts that proudly proclaimed "I was a 24 weeker!" This year, though, I looked for those kids. I sought out the shirts, and I watched them, buoyed by the hope and knowledge that one day, Miss Who will be among those babies running around.

 

Yes, hope and knowledge. From the day she was born, I have believed that she will kick prematurity in the butt and take names. This isn't a native belief; I know the statistics and stories all too well. This comes from a belief in my gut, the feeling of peace that washed over me when I learned of her arrival, the joy I saw when I looked at her in her bed.

 

And the knowledge, too, of having four years of this under my belt.  I remember where George was 2 years ago and I see where he is now. I remember two years ago, when we walked along Baby Boulevard and he could have cared less about his sign. I think back to Sunday, when we found his picture and how he kept saying, "That's me! That's me!"

 

Right below his sign (photo credit: friend)

 

When I was at the walk, I had  sudden, fleeting vision of a little toddler, a toddler with pudgy legs, big brown eyes and soft brown curls, wearing a purple shirt, standing between her parents under the banner. I couldn't help but be thankful that, due to research on the part of the March of Dimes, Miss Who has an awesome chance at life. Like George, she is one in 8:

 

photo credit: March of Dimes

 

and like George, she will be awesome.

Sunday Surf: 2/24

I'm joining Authentic Parenting and Hobo Mama for Sunday Surf. Share your best reading of the week, and link up your post at either blog!
For more great reading, visit Hobo Mama or Authentic Parenting for the latest Sunday Surf and linky.
Happy Surfing!





To go along with my "But it could be worse!" post, I came across No Such Thing as an Easy Ride from "Not Even a Bag of Sugar." It was written in 2012 but is a goodie.

To The Mainstream Media Just Doesn't Get God or Catholicism, I say . . .  "Well, DUH!" But read the article anyway. It's good!

Yet another item from the "What are they thinking?" files: Am I crazy? Don't answer that. I'm not taking about the crazy old man- everyone agrees he's nuts and needs to be drawn and quartered or something nice like that. No. Scroll down. Keep scrolling. Yeah. Yeah.

How do you know you are a good parent? But what is a "good parent" anyway? Simcha Fischer has the answer, as always: Here We Are.

This kid is awesome. Enough said.

Get your hanky and be prepared to shed a tear or twelve. This local photographer will go to NICUs and take pictures of your baby. I wish we had done this when George was in the NICU! Jessica Strom: Welcome to the NICU

I should have gotten the drugs.

In November I went to my therapist for my three month medication check up. She likes to check in on how I am doing and make sure I am on the proper dosage of medication. These take about 20 minutes of my time and really aren't a bother... although I sometimes wonder if they have me come in so often just so they can see the little boys! They love playing with the kids.

My therapist thought everything sounded great although my anxiety had been a little high. We just chatted and she offered to write me a script for anti-anxiety medication to get me through the rough holiday season. I declined it then but promised to call in if I felt I needed it. I really felt confident that I wouldn't, though.

Darned if I shouldn't have taken the script and chugged a whole bottle right then.

On Tuesday Cole had a follow up appointment with his ENT. (I say "his" because we are now the proud patients of TWO ENTs.) We still have some concerns about his speech development and our birth to three program encouraged me to ask about more in depth hearing and possibly an ABR.

At the ENTs office, the audiologist tested his hearing as best he could on a 2.5 year old who hates people in white lab coats, sitting still and cooperation in general. He passed the exam and his ears looked perfect. He's grown several inches and gained a few pounds too, which we were all thrilled about.The ENT said that it can often take children until they are 4.5 to 5 to catch up on speech if they had a hearing loss related to ear infections, which Cole did.

BUT I have a history of hearing loss in my family. Coupled with the fact that he hasn't made as much progress as we would like, the ENT wants me to bring him back in six months for another hearing test. He passed the exam as much as he can without being "heavily sedated" for the ABR.

Yeah, as soon as they said "heavily sedated" I was like, "Oh, we can wait six months. I'm cool."

The next day, Adam had his foot surgery. He has a condition where the bone in his ankle "flakes" off and loose fragments of bone hang around in his joints. It's not exactly pleasant and every few years they have to go in a suck out the bone. (I offered to do it on the kitchen table with a sharp knife and the vacuum. He said no, even after I offered whiskey as an anaesthetic. Whimp.) The surgery takes a few hours and is at an out patient clinic.

I was fine when we were at the clinic, even thought the place smelled like a hospital (read: sterile. Read also: NICU). I kept my mind off everything by grabbing a snack (stress eating) alone and sewing the ears on a stuffed cow. The real problem came when they brought me back to the recovery area.

Adam was sitting up in bed, shivering, attached to heart and respiration monitors and an IV.

For a moment, he wasn't there and I was with baby George, watching the monitors.

I had to take a few deep breaths to compose myself, reminding myself that this was my husband, not my son. My son was home with his grandmother, being spoiled rotten and enjoying himself.

But I still watched the monitors, remarking on his heart rate and breathing to the nurse. I felt my heart rate rise and I willed myself not to have a flashback or panic attack.

It worked and we drove home fine.

But when Sandy Hook happened, that was IT. I was DONE. I was dreaming at night that my daughter and niece were in school and hurt. I dropped the kids off just fine, but I was more worried than normal and stress eating.

I called in for the anti-anxiety medication and picked it up. There was only one problem... it would make me very, very sleepy.

Now, this is a common side effect of the medications I can take. Normally, it isn't a problem and when I sleep at night, I feel better in the morning. Win-win. But I know from experience that I am hard to wake up at night... and my husband would be doped up on hard-core painkillers. Even without the pain killers, he couldn't walk. If there was an emergency at night, neither one of us would be able to help the kids.

Sigh.

I never took the medication and muscled through somehow. It wasn't ideal. My in-laws ended up coming one afternoon just so I could nap. My parents were in town for a  few days and helped to wear the kids out and took two of them for the night. I still didn't sleep well but the help was valuable.

Thankfully, Adam recovered well and will be getting his stitches out soon. He's more mobile and is back at work. He had to wear a "boot" and use crutches as needed but he's no longer laying in bed all day, watching Star Trek on TV. I hit a wall last week and took a 3 hour nap on New Years Day.(Snuggled with Camille and Cole... it was sweet!) I'm still tired and run down, but a few days of some good vitamins, food and the kids back at school should help!

Still... I wish I hadn't had to muscle through on my own. I wish I could have gotten some sleep. It wasn't the most fun filled holiday season ever, but we made it through and plan to enjoy 2013.

9 Days that Changed our Lives: Thanks and Giving

Every year since 2008 Adam and I have coordinated a team of volunteers to bring Thanksgiving dinner to parents who currently have babies in the NICU. Adam cooks the turkey, I get the volunteers together and we all come together Thanksgiving Day to feed the families who are where we were years ago.

This is our fifth time bringing Thanksgiving to the NICU and we had 3 TV stations filming the event. All three covered the story from different angels. Adam and I were interviewed by KMBC.

Many of the parents who help out are parents of micro-preemies. They spent months at the bedside of their child while we were there for only 9 days. It was only 9 days but it was 9 life changing days. It changes everything about us- how we parents, how we view life, the causes we are passionate about. Because of those 9 days, we have the NICU Thanksgiving.

Adam started it. He told me he had "nervous energy" and need to do something. In 2008, while George was still in the NICU, he brought dinner to everyone by himself. In 2009, we had a small group of volunteers. Now we have the NICU Foundations, Circle of Hope, helping us and I feel that this year was our biggest and most successful yet!

 

 

People ask why we do this. In his clip, Adam said "guilt" but that's not really the case. We came to love and care for the other parents we met in the NICU and really wanted to do something for them. It's our way of offering love and support to the people who are where we were four years ago.

 

Some say that the short amount of time late term preemies spend in the NICU doesn't matter. Some say they aren't real preemies or real graduates or that the long term problems they have are nothing. But remember- that late term preemie of mine, those short 9 days.... they are the reason for this. They are why we give thanks and give back every year.

 

Those 9 days.... they mean everything.



My son is 1 in 8.

Thank you to Life After the NICU for the purple and green banner on the left.College created with Picmonkey. Photos from Laura/WaldenMommy.

Today is World Prematurity Day. My son will turn four in a few days. Please take a moment to remember the struggles these little ones face and the heart ache their parents go through.

My son is 1 in 8 babies who was born before the end of 37 weeks. One year and one day later, his cousin was also born at 35 weeks. She is 1 in 8. Thanks to medical research and intensive care, both babies are living and thriving... but George has been left with large term effects of being born too soon.

Together, we can help babies grow strong and reach a full 40 weeks in the womb. After all . . .

World Prematurity Day: Interview with Joy Lawn

In this video, Joy Lawn specifically talks about late preterm babies. While in the US and other developed nations, it is easy to save these babies, they do die in other countries. However, even without high tech care, they could be saved.

Why wait 40 weeks?

Graphic thanks to the March of Dimes.

How's your mental health?

If you go to my sidebar, you can click on "The Yellow Wallpaper (PTSD)" and see all my posts about dealing with PTSD and PPD. I don't know if I have ever told you the whole story of what happened. I don't know if I can right now. It was a hard, hard time and I remember telling my father that I knew why veterans would turn to drinking as a way of coping after a war. I felt like I had been through a war zone. I got it.

In many ways, I had been through a war zone. Studies show that the emotional trauma of the NICU has a huge impact on parents. It is something that is hard to understand, unless you lived through it.

In addition to depression and PTSD, I experienced anxiety after the NICU. I think it is common, because anxiety levels are high while your baby is in the hospital and they may remain like this afterwards. When you have spent so many days wondering if your child will live or die, it's normal to be anxious about their health! To this day, I dread cold and flu season, wondering if George's lungs are still strong enough to take the onslaught of germs. Yes, I know it is silly because the child has never had anything wrong with his lungs (since birth!). But it is there. This article from Hormonal-Imbalances is a source of good information about one woman's experiences with anxiety after the birth and death of her twins.

If you want to know why I call PTSD and PDD "The Yellow Wallpaper" go here.

If you want to read about the niggling effects of PTSD and meeting one of our nurses 3 years later, go here.

In some ways, trying to take control of PTSD and living with PPD/anxiety is like constantly living in fall, praying you never see winter and wishing for spring. But sometimes, fall isn't so bad. There can be help in fall.

And maybe you can skip over winter and head straight for spring.

World Prematurity Day

Nov. 17 is World Prematurity Day. It's a day to sit back and reflect on the true miracle of a healthy baby.

Three days later, George, my own little late-term preemie, will turn four.

This week, in honor of him and his preemie cohorts, I will be sharing stories and information related to prematurity. Of course, Late Term Preemies (those born between 34-37 weeks, 6 days) are close to my heart.

Tatum at Ain't No Roller Coaster recently made some awesome graphics that give information about all sorts of things related to prematurity. Her oldest son is a late-term preemie and her youngest is a micro-preemie.

 

Although the phrase "Later Term Prematurity" encompasses kiddos born between 34-37 weeks, I can tell you there is a huge difference between those born at 35 weeks and those born at 37 weeks. My oldest son, Joseph, was born at 37w1d. He was small, five pounds 11 ounces, but breathed on his own. We did have to work at breastfeeding, waking him up every hour and half to eat, stimulating him to eat and working on his latch. However, how much of that was due to him being born at 37 weeks and me being a first-time breastfeeding mom, I don't know. I do know that we had no concerns over how much he was eating, no problems with his latch, he gained weight well and we had no worried about jaundice. He never had formula and nursed until he was 15 months old. To this day, he's about average in height and weight.

On the flip side, George was six pounds, eight ounces. (I took fish oil throughout my pregnancy and we think that's one reason he was labeled as Large for Gestational Age. Water immersion (I swam several times a week until he was born) and fish oil can increase  blood flow to the placenta, making for a well fed baby.) He was able to breathe at birth but he didn't breathe well. He was given to me as soon as he was born but I could tell something was wrong. With my older two children, I had a strong maternal desire to bring them to my breast, cuddle them and feed them. With George, I kept thinking, "Please take him away and make him better." I held him away from me and upright so he could breathe easier.

George had RDS. Even after he went home, I had to supplement with pumped breast milk, be careful to make sure he ate well and often and had to go in for frequent weight and bili checks. It wasn't until he was six weeks old, a week adjusted, that he began to gain and maintain his weight.

The thing with all preemies is that they are not always caught up at two. George's eating problems come and go even now, at nearly four. Late term preemies are born before their brain is fully developed:

 

and the results of this can be devastating and long lasting.

 

Most of the premature infants born in the US are Late Term Preemies. Because we can and do save much younger infants, LTP are considered the "easy" preemies with minimal side effects of their prematurity. Considering that their risk of death is much, much lower than that of their micro preemie counter parents, it is easy to see why medical professionals think nothing of routinely taking babies around 36 weeks. However, this needs to stop. It needs to change.

 

Would my son have CAS and oral feeding problems and SPD if he hadn't been born at 35 weeks, vent'd and pumped full of life saving antibiotics? I don't know. I do know that he would have likely died without all of those treatments. I know that, knowing what I know now, I would have asked to not be induced, but rather given the steroid shots for his lungs, possibly mag sulfate to slow my labor or just stay in bed and be monitored for an infection. I would have tried to keep him in another week or two, just to give his brain and lungs a little more time. It would have been hard but . . .

 

 

Please enter my giveaway of Elizabeth Pantley's books!

Sh!t People Say to Parents of Preemies

Be sure to check out my review and giveaway of Elizabeth Pantley's books and NPN's Holiday Gift Guide!

 

 

November is Prematurity Awareness Month. In honor of this month, I bring you . . .

 

Sh!t People Say to the Parents of Premature Babies

(I have no video skills or I would do a video, trust me!)

"You are so lucky that you didn't have to endure nine months of being pregnant!"

"But he's not sick, right?"

"Did you do drugs?"

"You must have done drugs."

"Those babies aren't really sick. The doctors just want to keep them in the hospital for the money."

"What do you mean that he can't be touched? All babies want to be touched!"

"Are you pumping?"

"You're going to pump, right?"

"Why aren't you breastfeeding?"

"I don't need to wash my hands!"

"You're too worried about germs! Kids need to get sick to build their immunity!"

"Is he going to be one of those deformed kids?"

"Why are you trying to save him? Don't you know that he's just going be in a wheelchair for his entire life? Do you want to spend your entire life caring for a handicapped kid?"

"He will be just fine."

"Why are you worried? He's fine."

"Is he going to die?"

"I once knew a baby who was born xyz weeks early and now they are a high-powered doctor. You are worried for nothing. These babies will be just fine."

"Why can't my four year old visit? She just wants to hold the new baby!"

"You should bring your children to visit the new baby. How will they learn to love their new sibling is they can't visit?"

"How can you spend all your time at the hospital? You should be at home with the other kids."

"How can you be at home with you other children? You have a sick baby in the hospital!"

"What did you do wrong?"

"If you had used a midwife, this never would have happened."

"I don't see what's wrong with him. He looks fine to me."

"It's all for the best."

"It's God's will." (Note: these are completely different from, "I am praying for you/ thinking of you." That is okay. The ones listed above are not!)

What crazy things have people said to you?

Prematurity Awareness Month

Babies being evacuated from NYU Langone Medical Center to
New York Presbyterian Hospital during Hurricane Sandy.

In the middle of Hurricane Sandy, several NICUs were evacuated. Nurses carried their little patients to safety.

I cannot look at these photos without crying. Thank God for the loving, caring staff who took care of these babies. And many prayers for the parents, who had to be worried sick.

As we begin Prematurity Awareness Month, let's remember the true hero's of the NICU- the medical staff who work who tirelessly to take care of our wee ones.

(Photos taken from Peek-a-boo ICU on Facebook)