Omphalocele awareness

We're proud to announce that January 31st is Omphalocele Awareness Day!

Our group, the Mothers of Omphaloceles are using all our social networks to spread the word in order to spread awareness of this condition. We want to let other mothers that are being diagnosed now know that there is hope, and support for them. And also spread awareness to the general public that although a child being born with an Omphalocele has hope, it is important to support the family because the recovery isn't as easy and straight-forward as some might think.

This video is a compilation of pictures of Omphalocele children and adults. Please share!


http://m.youtube.com/#/watch?feature=share&list=FLss-1w6DO-csRBR0kuGepYQ&v=MiDHmKrtvXY&desktop_uri=%2Fwatch%3Fv%3DMiDHmKrtvXY%26feature%3Dshare%26list%3DFLss-1w6DO-csRBR0kuGepYQ

Our new addition is.....

Alrighty, lots of news to impart, so settle in and get ready for a bit of a read!

:-) Of course, one of the most pressing question I've heard lately is "So do you know what you're having...?" Yes, FINALLY after waiting until I am 22 weeks and going through gut-wrenching anxiety over the health of this expectant kiddo, I can say with a big grin on my face that we are looking forward to a BIG, HEALTHY baby GIRL!
No issues were found at our big anatomy scan yesterday, her growth is wonderful, and she was throwing punches. Atta girl!
I literally could not stop laughing after I got in my car and started driving home, the relief just swept over me.

Now of course, I'm allowing myself to plan things regarding this pregnancy beyond the vague notion that I am having a baby.
We're discussing names, we're making a list of items we need. You would be surprised at how many things we do need considering that Evan was born just 17 months ago.
But keep in mind that many things we DID receive for him, we exchanged for things better suited to older kids because we brought an 8-month old home, not a newborn. So things like a bassinet, a swing, etc.... We have to get those things!

I went through all of Evan's old clothing, which was a bittersweet endeavor. I love seeing all the tiny clothes he used to wear, but hated seeing SO MANY clothes he couldn't wear in that newborn to 3 month stage. I think we had 3 outfits we put him in. I admit I teared up seeing all the clothing he never wore.

The realization is hitting me today- I will (barring premature birth or unforeseen complications) be bringing a tiny little newborn bundle home with me when I get discharged. No tubes, no wires, no monitors.
The enormity of this is overwhelming.
I am going to be a mess hearing her cry when she's delivered and when I get to hold her.

So what about her big brother? Well, Evan has made strides in the past few weeks in all of his therapies. He is talking easier now, playing with more dexterity, and cruising with the best of them! We are still slow going with his feeding therapy, but he is making progress. We start formal therapy in two weeks.
He really is doing so wonderful. He has no idea what is going on with the new baby coming, and I just hope that there won't be too much of an issue.
The biggest problems we've faced the past couple of weeks are his lingering cold symptoms, and a reoccurrence of his night terrors. Luckily the night terrors are not as frequent as they were previously, but it still is not fun for anyone involved.

I'm cautioning anyone reading that isn't aware that this cold and flu has been a tough one so far and it's not finished! Please, if you have sick kids with a fever, keep them home. Give them lots of fluids, and disinfect areas in your home such as light switches, phones, door handles, etc that everyone touches. Use a hand sanitizer frequently when in public. Wash your hands.
And please, get a flu shot if you haven't already.

Merry Christmas

Christmas has been amazing this year.

Evan opened and has been playing with his gifts- we had a nice breakfast and a great lunch with ham, potatoes, rolls and green beans with plenty of leftovers for later enjoyment!

We have a fire in the fireplace and it SNOWED today! Such a rare event for us to have a white Christmas. We couldn't have asked for better. :-)
Most of all, we're home and together, which is such a key difference from last year, when Evan was in the hospital.

We'll be heading to my parent's this weekend to see them. So it'll be a really nice holiday all around.

For today, I'm one well-fed, happy pregnant momma. I'm warm and it's cold outside. My dear son has gotten to experience snow for the first time, and he enjoyed opening his presents.

Life's good.

Night terrors

Oh boy!

Ever since Evan's hernia repair in August, sleep disturbances have been on the rise. It's not too surprising, since the repair marked a big turning point for him in regards to therapy and development. And we all know that when toddlers get busy, sometimes they get so excited to stay busy that they wake up in order to practice some more!
But unfortunately, this is not always the case for Evan. He has been waking up inconsolable more and more often. I thought they were night terrors, but you really can't do much about them, other than waking your kid up slightly before they usually start in order to disrupt the sleep cycle. However, it has begun to take over our lives. Every other night, he is "waking", screaming and inconsolable, sometimes for as long as 25 minutes. He pushes away from me when I try to hold him or soothe him, crawls away when I put him down, and screams and cries until he chokes. I try to hold him without holding him too tight, because he seems to think he's being hurt somehow and trying to hold him tight makes it worse. But in the end, he just stops crying, and acts like he's asleep again. He might wake up fully, which sets off another bout of crying, this time allowing me to comfort him. But I can tell he's crying because he's confused, not because he's afraid or acting like he's being hurt.

It just flat out sucks to have to see your child go through that. We're trying to find ways to manage it... but there are few solutions a parent can try. I'm afraid we'll need to speak with his pediatrician on depth about it soon.

Also, he's developed a bit of a cold over the weekend. However, he hasn't slowed down for it much. Luckily, he already had his first dose of synagis to help him recover from nasty colds quicker.

Other than that, he really is doing fantastic. He's climbing up the stairs on his own, he's cruising around a bit. Before we know it, he'll be walking!
I feel like we're actually getting closer to him catching up with others his age. Or at least having them in sight, instead of miles and miles ahead.

As for me, I'm 19 weeks pregnant now, and I feel like I'm already hitting my third trimester! It doesn't help that I chase after a toddler every day, or that from Thursday night until this Monday morning, I've managed 14 hours of sleep, due to Evan's night terrors and the cold. :-/
One day, I hope to sleep again.

In the meantime, as always, we will manage the best we can. At least we have some really cute pictures to share!

16 months

When you have a kiddo like Evan, there are milestones, and then there are special days.
Lately, I have been remembering where we were a year ago. Last Thanksgiving, we had just moved him from the NICU to the Transitional Care Unit, and his Grandma Storey got to see him for the second time.
One special day coming up is his 16 month mark on the 30th of this month. Most everyone that has kids use 18 months as a celebratory time- yay a year and a half! But 16 months is particularly special to me because it marks 8 months since we got discharged. He spent 8 months in the hospital. So this is the beginning of the time that he has spent more time at home with us than in the hospital. :-)

And it couldn't come at a better time. Thanksgiving was a great success. We have our Christmas tree up, and I am singing carols loudly and off-key.

Ever since I found out I was pregnant with Evan, I started planning the things we would do for Christmas. It is incredibly important for me to instill a sense of fun and wonder in the holidays for my child .... soon to be children. Because I grew up without Christmas, and I gotta say it wasn't fun during this time of year. It wasn't all about the lack of presents. I really loved the lights and the music, and the celebratory mood. Good food, seeing family, having a tree lit up and watching Christmas specials on TV...
I want my kids to see all those great things that so many people take for granted during the holidays.

So if you see me sometime this month in public skipping merrily along, singing the only words I know to "Jingle Bells" at the top of my lungs- please excuse my excessive Christmas spirit. :-) Its all for a good cause.

Oh yeah, I have a blog!!

It may seem as if I have forgotten about the blog. It's not that, it's just that I am only now recovering from one of the most miserable three month time frame I've ever experienced. Morning sickness sucks.

So finally, now that I can eat and drink again, I feel human enough to update on everything that's been going on since my last posting a month ago.

Ready?

Okay, so Evan is crawling. I mean, this kid nearly crawled out the front door! (with Daddy carefully supervising) He is crawling to the couch and pulling up and seriously considering cruising.
Which is so cool and makes me so happy, I have to use a word that isn't in the dictionary- It's splendiferous!
:-)

He is gaining weight (slowly), but I've increased his feeds do much in the past month, and he has been a real champ. He grew an inch, which is so great, and he has all of his 1st molars in or cutting at the moment. He's even beginning to get his bottom canines!

Eating orally has progressed somewhat, but it has always been the slowest progress. We just have to be patient and keep trying to get him to eat enough to replace a formula tube feeding. We're getting there though.

He's really a talker now! He's saying "b", "d", "y" and "g" sounds, and has said "dada" and "ma" in appropriate situations more than once. He also says "de-de-de" as we go down the stairs because I've been encouraging him to verbalize what we're doing, like going up or down, etc.
He also will babble and yell for extensive periods of time, changing his tone and facial expressions. It's hilarious to watch. :-)

I am so thrilled about the holidays coming up. This time last year, we were only halfway through an 8 month stay in the hospital, and we didn't get to celebrate Thanksgiving and Christmas quite the way I had imagined.

This year, we're having two Thanksgivings, one with my immediate family members this upcoming Sunday, and another on Thanksgiving day with Carl's mother. I am so looking forward to both, because it's been too long since we had a good holiday.

Oh and Christmas!! I am so excited! Carl and I are planning to take Evan to see all the pretty lights later on. We have a Christmas tree, my very first one since I lived my parents, and I am going to so enjoy putting it up and decorating. I don't care if we have to barricade it so Evan can't wreak havoc. I love the fact we even get to worry about it.

We're going to take Evan to see Santa. I'm so excited about that.
AND we are going to be able to get Evan a few gifts this year, which is phenomenal.

All in all, it's going to be a fantastic holiday season.

Finally, let's talk about our other little one. I'm 14 weeks now, and so far everything seems to be progressing well. I have a checkup next week, which I'm really anticipating, but other than the morning sickness nightmare, I have been doing very well.
I'm hoping to see our littlest one in an ultrasound soon, because I am nervous about the baby's well-being after what happened to Evan.
But I swear I'm feeling just occasionally, the tiniest bit of movement in there. It's not surprising, since I started feeling Evan move at 16 weeks, which apparently is really early for a first timer. I'm showing just a bit, which you can see in a picture below.

Other than that, we've been slowly adding to our weekly routine. I'm now trying to take Evan to the park weekly, for both our own good, since the weather has finally cooled down. He really enjoys the swings! :-)
We keep busy otherwise with errands and therapy appointments, and all the playtime at home, working on everything.

Really, I expect to continue to see phenomenal progress in his physical and mental abilities. By Christmas, who knows what he'll be doing?!?

Snot factory

My little snot factory is still going strong-poor guy! He's not really feeling BAD, just producing epic amounts of mucus.

He's doing fantastic, pulling up on his own and moving around great- he's really trying to crawl a little, although its more a scooting around thing. It's cool, just so long as he gets the idea that he's capable of mobility on his own.

Feeding is going great- he's regularly eating 8 ounces of stage 2 baby food a day- we're still not keen on liquids, but I finally feel like we'll get there soon enough.
We cut out his continuous feed at night, and his frequent waking has significantly diminished. I'm so thankful to be sleeping in my own bed.

I've been quite thrown off by my extreme morning sickness. It's just had me down. Blech.
Which accounts for my lack of posting.