Life with a 28 week preemie & his miracle sister born & living with an Omphalocele birth defect

Life with a 28 week preemie & his miracle sister born & living with an Omphalocele birth defect

Sunday, December 26, 2010

Christmas 2010

I hope everyone had a wonderful & blessed Christmas. Ryan was so excited this year about everything-the decorations, the tree & of course the fact that Santa brought presents. We did read the Christmas story of Jesus every night for the past 2 weeks and he liked that but it will probably be another year or two before he really understands why we have Christmas..not that it's just about Santa bringing gifts.

I'll post more in another entry about our Christmas Eve & then Christmas day (i'm short on time) but by far his favorite gift was from his Nana & Papa (my mom & dad). A Strider Balance Bike!


I learned about this bike from a fellow preemie mom who bought one for her son and he's done so well on it within a few short months. I've read nothing but positve comments about it and know that it will help his balance and core strength. Ryan's physical therapist even said we could bring it in to therapy! He was sooo excited when he opened the bag and was just grinning from ear to ear. My parent's are going through some remodeling on their house so he didn't have a lot of room to ride but he didn't care..he got right on it and started walking. Of course, this is the Christmas it decides to snow so we can't take it outside just yet but the forecast later in the week is calling for 50 degrees so we should be able to get out by week's end for him to ride it. Meanwhile, he's been walking around with it between our den & kitchen. Here's a couple videos from Christmas.


Cautious but excited

Things have been really busy here and while I try to post an entry at least once a week it doesn't seem I'm keeping up with that. Trying to get everything ready for Christmas and going to doctor appointments has kept us busy..not to mention work. I haven't posted much about this pregnancy for a few reasons and I'm still at odds at whether I want to or not. In a way, I do want to post to have a journal of sorts to refer back to but I'm not sure if I want it "all out there". I started this blog for Ryan because I was (and still am) bad about keeping up with journals & baby books that have all the "milestones" entries. Do I have time to make another blog just for me & little miss sweet pea? Probably not. But I do want to post about my feelings & what's happening with this pregnancy so I might just need to do that..another blog that is and make it less public. I know this decision is mine and mine alone but if you want to comment on your thoughts go right ahead...I'm listening.

That being said, I am getting a little more excited every week that goes by. I'll be 23 weeks tomorrow (Monday, Dec. 27th) and I've been feeling her kick for a few weeks now. I'm a little disappointed that Dean still hasn't felt her but every time I feel her and then put my hand on my stomach she stops..and I don't get a chance to tell Dean to come over and feel her. Hopefully these next couple weeks she'll start to be even more active and he'll be able to feel her kick. I'm still wearing my regular clothes and at my past appointment actually lost 2 lbs. from my previous appt. I'm still up 11lbs though. Now that Christmas is over I'm sure I've gained back those 2 lbs plus more..ha! I think in the next couple weeks I'll be needing some maternity clothes for sure. I really need some shirts already but just haven't had the chance to look or what I have seen, I don't like. I'm off work for the next week so I'm sure I'll be able to get out and look around some more.

Thursday, December 16, 2010

Snow!

Is this what our winter will be like this year? Who knows..not even the weather "guessers" know around here. We've already had 2 rounds of snow and they are saying in another couple days we could get a bigger snow event. The first snow we had was on Monday. It was a surprise for sure because I watched the weather Sunday evening and saw nothing about getting snow. Luckily, the weekend weather had been somewhat warm (50's) so the snow was pretty to look at but didn't stick to the roads. Around here, because we don't get snow all that often(sometimes we can go a couple years without it), even an inch is a BIG DEAL..(laugh away my friends in Chicago & Wisconsin). So getting home from work Monday was uneventful. Ryan was giddy and he walked down the street to the mailbox with Daddy and then posed for some pictures.



Since it has been pretty cold all week, in the 30's, they were predicting today's snow would accumalate some and then some of it wash away when it changed to rain..which happened. I went into work for a few hours and then we closed for the day. I walk about 2 blocks from our office to the mall parking garage so even though I was in my tennis shoes, I basically walked baby steps the whole way. I'm a clutz and being pregnant with about 10 (or more) extra pounds doesn't help matters! Anyway, I got home safe and in the late afternoon I took Ryan out to play a little.





We'll see what or rather how much our next snow day brings!

Wednesday, December 8, 2010

Santa

After getting Ryan's Christmas pictures done at JCP, we walked into the mall and let him see Santa. The days leading up to the visit we kept telling Ryan to make sure he told Santa what he wanted for Christmas. I wasn't too sure he would actually talk to him since while he's not scared of Santa (or other people in general), he is pretty shy & quiet when he's in a new situation. He's become a lot better though after being in daycare & with his speech therapy. Since it was mid-morning the line wasn't long at all so we only waited a few minutes. He went right up to Santa, smiled, got on his lap and Santa started talking to him and Yes..Ryan talked back! We heard him tell Santa that he wanted cars, a motorcycle & a skateboard..haha! Dean and I were just giddy with excitement that he talked to Santa and even more because the picture turned out great too.
(it's a little bright because I didn't edit it after I scanned it)

Christmas Pictures

This past weekend we went & got Ryan's Christmas pictures done at JCP. Both myself & Ryan were long overdue for hair cuts and while I normally do not like to get hair cuts done right before pictures, it was a must. My mom took him to the barber shop a couple days before the pictures. His hair is a little short for my taste (at least the front) so it was hard to part it on the side, which I like to do. With that said, I still think the pictures turned out great. There's always that ONE great picture (well, usually) and this one was it:


We had a great coupon for 1/2 off the total so we got a couple more poses. I wasn't too happy with any of the family poses but only for personal reasons (I didn't like what I was wearing, my hair wasn't the way I liked it & I just felt blah!). We did end up buying one family pose though since Christmas is the one time of year we do family pictures. Here are a few of Ryan's other poses:

The photographer gave him this present and he really thought
something was in it. Notice how he's getting ready to open it..hehe

Thursday, November 25, 2010

Happy Thanksgiving!

There are so many things to be thankful for not only this time of year but all year long. I am thankful for so many things such as having a job, a roof over our heads, food to eat every day, the air I breathe. My life is certainly blessed and I think many people would agree that they are blessed as well. Being a wife and mother is the icing on the cake. I'm so grateful for having such a caring and understanding husband who puts up with me and all my moods! I'm so grateful to God for blessing me with not only Dean but for my precious son Ryan. He is truly amazing. From being born early and surviving to being an independent, go-getter 3 year old boy. He makes me smile just looking at him and always makes me laugh..every day!

Happy Thanksgiving to all my family & friends who I am also thankful for. Thank you for thinking, praying and always being there for Dean and I whenever we need.

Thanksgiving 2010

Thanksgiving 2009

Thanksgiving 2008


Ryan's 1st Thanksgiving 2007


Sunday, November 21, 2010

Thankful

Since this week is Thanksgiving and we are still in Prematurity Awareness Month, I'd thought I'd post a couple videos of Ryan. This might not be a big deal to most but for us it is. Thanks to physical therapy, Ryan's toe walking is now completely non-existant and the stiffness in his left leg has improved dramatically..hence why he can climb like it's no big deal!



Ryan is pretty much nonstop talking now (at least around us--he's still shy in certain situations) and loves to say his ABC's & numbers. He can count to 20 most all the time, skipping 12 for some reason, but of course when I turned on the camera he acted like he didn't know anything past 10. He's doing so great though since last year at this time he was only saying 2-3 word phrases.

Wednesday, November 17, 2010

Prematurity Awareness Day 2010

It was well after 10 pm of the day Ryan was born. It had been a very long 24 hours with hardly any sleep. The night before seemed to be quiet so I sent Dean home to get some rest. I had not had any contractions that the nurses & doctors detected on the monitors since my water broke 2 days before and they had even taking me off the IV fluids. Things changed a few hours after Dean left and by 2 am I kept telling Ryan to hang on and don’t come yet, but he was ready. He was born at 5:44 am by emergency c-section because #1 he was breech and #2 they had to give me general anesthesia since I was already fully dialated by the time the doctor in charge arrived. The day went by and my parents & brother stayed for many hours. I got to see pictures my brother took of Ryan and I just cried. Nothing would prepare me for when I saw my little prince in person. When one of the evening nurses came in sometime after 10 pm, she wanted me to try and get up. She asked me if I had even seen my baby yet and I told her no, that she was the first person to even tell me (okay, ask me gently) I had to try and get up. Without hesitation she said, "well I can get you a wheelchair and wheel you over there" (to the Children’s Hospital attached to the hospital I was in). THAT sure got me up! She helped clean me up (remember I just had surgery that morning) and off we went down the hallways of the hospital. Once we got to the Children’s Hospital, she let Dean take over and told us where to go. I was in pain but all I could think about was seeing my baby. We wheeled into the NICU waiting area and called back to the nurses station. Dean knew where to go since he had been there earlier so we made our way into Pod I. I could barely get up to wash my hands & arms but I managed to. The nurse even told me after a minute or so, that it was fine if I couldn’t do the entire 3 minute hand washing (which is required). Dean wheeled me across the room to the isollette nearest the window and I saw my precious baby in person for the first time.



Of course I immediately started crying. Seeing my baby hooked up to all the machines, many needles & wires coming and going from his body and how tiny he was just took my breath away. The nurse started telling us how good he was doing just from the sheer fact that he was on CPAP and didn’t have to be on the mechanical ventilator. She then started explaining all the different wires & machines but to be honest, I was just staring at Ryan and everything else I heard was background noise. I couldn’t get over that this was our child. Our first born baby. And he had to come into this world and start fighting.

But he did fight and still is a fighter.

Ryan had & still has so many incredible people helping him (and us) fight along the way. All of the doctors and nurses, his Early Intervention Coordinator, his Physical Therapists & Speech Therapists. Our family and dear friends who have stayed with us through it all and lent us their hands for anything we may need. I think most of the credit should go to not only GOD, but to Ryan himself. He is strong and determined.

That was evident 5 days after his surgery, when he was a week old and he continually removed the nasal cannula from his nose, proving to the nurses that he didn’t need any help breathing. It was evident when at 13 months old, he took his first steps and hasn’t slowed down since. It was evident at just over 2 years old when he finally started really talking, in 2-3 word sentences and not just single words, and even more so now at 3 years old because most times we can’t get him to be quiet. He has a smile that can light up a room. When he smiles, his whole face smiles. You can really see that he is happy. I’m so proud that he is MY son and I know Dean would say the same thing.



It’s almost hard to believe that he was born weighing 2 lbs. 13 oz. What does that compare to? A sack of flour? Nope, that is usually 5 lbs. A 2 liter soda? Nope, that is about 4 lbs. Next time your in the produce aisle, pick up an average size Eggplant. That's what 2 1/2 lbs feels like. Ryan was just a tad bigger than that when born but after his surgery on his 2nd day of life and not being able to eat for 10 days, he got down below 2 1/2 lbs. We got through it all though. Somehow we managed to get through it. It wasn't easy. I cried every day. I think being somewhat ignorant about it all probably helped me get through it. I barely knew what the March of Dimes was much less what it meant for a baby to be born at 28 weeks. But since then, I've found out so much that my mind can't even comprehend all of it and I have met some fabulous people along the way as well.

Today, November 17, 2010, marks a day thousands of people from around the world will unite to blog about prematurity. So today we blog. We blog about the ones we love. We blog so we can make more people aware what prematurity is and that premature birth can happen in any pregnancy. . The goal is to spread awareness about Prematurity, which is still the #1 killer of newborns.

To get more information about prematurity and how you can help visit the March of Dimes website.

If you want to read Ryan's full birth story you can start at the beginning
and then go here for the rest.

Tuesday, November 16, 2010

Feelings

Feelings are hard to deal with sometimes. Not many days go by, especially now, that I don't think about how I felt after I gave birth to Ryan. After I had to leave the hospital without my newborn baby. Life had to go on though. There were groceries to get & laundry to do in between visits to the hospital. I will never forget the first trip to the grocery store one night after being with Ryan. Dean and I were in the deli line and who was in front of us? A baby. A Mommy & Daddy with their baby. Playing hide & seek and loving on their baby. I tried not to pay attention but it didn't work. I eventually started tearing up and had to walk away. When I went back to work, Ryan was still in the hospital. He was doing well and was expected to come home soon. My short term disability had run out and I wanted to save my leave time for when he came home so I went back to work. Just walking into someplace other than the hospital felt almost foreign to me. It was good to get out into a different setting but it was hard. Hard to deal with my feelings. I wanted to be with Ryan or just alone in general. So as I go through day to day life now, I try to keep people's feelings in mind. When I'm in a store, walking through the mall or at the doctor's office if someone is rude, looks sad or doesn't talk maybe it's because they are going through a hard time. Sometimes having a sign would be easier I think. This blog post really touched me so I'd thought I would share:

Seeing Past What it Seems

Monday, November 15, 2010

Post Halloween

It’s been almost 2 weeks since I’ve updated the blog..yikes. Believe me I always, “think” about writing a post but then other things seem to get in the way. Household stuff, errands, work, sicknesses. Yep, sicknesses. We’ve all the bout of sinus congestion, runny nose & coughing. It started with Dean and then early last week I got it and am still feeling the effects of it. Then Friday night Ryan started with the snotty nose. Needless to say we stayed in all weekend. This is what part of our living room looked like (the other half wasn't any better--I almost felt like I should've called "Horders"--haha)


So far he hasn’t been coughing too much but we did keep him out of daycare today because of his nose and this morning he said his head hurt (headache). We are blessed in that my mom is still available to watch him on days like today (she still watches him on Tuesdays & Thursdays and takes him to PT & ST those days...again, such a blessing!).

To the reason I titled this "Post Halloween". Halloween weekend was so busy that we didn't even have time to decorate the pumpkins until the day after Halloween. Ryan had fun decorating his pumpkins with stickers and we put them outside in the flowerbed, which where surprisingly they still sit (I figured some kid would come by and smash them..at least our big one).



Monday, November 1, 2010

Prematurity Awareness Month


November is Prematurity Awareness Month and November 17 is National Prematurity Awareness Day. Our lives changed forever on July 18, 2007 when our son was born almost 12 weeks too soon weighing only 2 lbs. 13oz. I had always heard about babies being born early or with birth defects, but I was one of those that never thought it could happen to me. My doctor never gave me information about what could be done to prevent preterm birth or suspected that it could happen to me. More than a half million babies are like Ryan, and will be born too soon this year. To learn more about about the seriousness of premature birth, donate, or create a virtual band to celebrate, honor or remember a baby in their life visit the March of Dimes web site – marchofdimes.com/fight.

Each year, our family walks in the annual March for Babies. It's our way of giving back to the March of Dimes. Giving back for all the research that has been done to help babies born too soon have a fighting chance at living and to help with the future research which will ultimately help more babies be delivered at full-term. Our local walk is at the end of April 2011. I've already started fundraising because for reasons I will explain later, we will probably not be able to walk. But just because we might not walk, doesn't mean we give up on fundraising. I will raise as much money as I can every year. Because Ryan is alive & thriving today due to the advances from the March of Dimes.

Fall Fest at the Farm

We finally were able to take Ryan to the Fall Fest at a local farm this weekend. We go every year because it is a lot of fun and we're usually able to get good pics (in Halloween or Fall attire), let him ride the pony, ride the hayride, play in the Inflatables & pick out pumpkins. This year it seems we've had something going on every weekend and this was the only day we could go. The weather was perfect and Ryan had a great time as always.
riding the pony



posing with the pumpkins

a pretty decent family shot

on the hayride

Ryan loved the goats..he wanted to ride this one!

Happy Fall!

picking out his pumpkin (with my mother in law)

Here's my pumpkin, Mom

I have a couple videos I'll share in another post later..stay tuned.

Halloween 2010

We had a busy Halloween weekend which ended with Trunk or Treat at my friend's church and Trick or Treating in my parent's neighborhood. Ryan had a great time and really understood about Halloween and the fact that kids dressed up and asked for candy. We had a hard time deciding on a costume this year but he actually helped pick it out. I thought we were going to get him Buzz Lightyear but when he saw The Cat in the Hat, there was no convincing him otherwise.

At the Trunk or Treat, he got to play games for candy which he enjoyed.

there was even another Cat in the Hat


Then it was off to my parent's house for Trick or Treating

He did leave the hat & gloves on (surprisingly)

He had a fun time, esp. since Papa (my dad) came along
for the walk

Sunday, October 24, 2010

Nice weekend

We had a nice weekend with my little man and I really needed it. Saturday we went to the local theme park for the last time this season. The weather was perfect and Ryan had a great time as usual...actually even more so since we took our godson whom Ryan adores and gets to play with in the climbing playground area (which we don't let him go up in unless our godson is with us).





 The park has lots of Halloween decorations & creatures and this was
one of the creatures inside a store. Ryan who is not afraid of much didn't
really like standing close to it which shows by his face.

The park will be all set up for Christmas at the end of November. This is the second year they've set it up as a Christmas theme and we'll be going for the first time so we're excited and I know Ryan will be as well.

Today was mostly a day to relax. Dean went to watch football with his brothers so it was just me and my little prince for the afternoon. I took him to Target since I needed to get a couple things and we actually walked out of there without some sort of car. He seems to think every time we go to Target or Walmart, he gets to pick out a car for us to buy. Well, I've had a enough with the cars. He has enough to open his own store (okay, well maybe not that many but it's close) and with Christmas coming up, I feel he doesn't need something every week. He's really into coloring lately so I had him pick out a coloring book. He also found a Thomas the Tank Engine book which I also got just because I wasn't feeling good at that point and wanted to leave without an arguement. So we came home, colored & played trains and took a nap together. No whining or crying happened and he even said, "mommy don't feel good". I said, "yeah honey, I don't" and he said "close your eyes mommy". I just laughed out loud. He's such a sweet boy and really knows when I need cheering up.  

Speaking of talking, I'll try to get to update in regards to his speech & physical therapy in my next blog post.

Friday, October 15, 2010

Pregnancy & Infant Loss Awareness Day

Today, October 15th is Pregnancy & Infant Loss Awareness Day. I am remembering & praying for all my friends who have lost their precious babies.

http://october15th.com/

Wednesday, October 6, 2010

"Mommy Cranky"

It's truly amazing how much difference a year makes. Last year at this time Ryan was still in speech therapy through Early Intervention and making great strides. He was saying some 2 & 3 word sentences such as "want cracker" and "get a bath". Now, he's saying full sentences, singing & sometimes will chatter on mostly all day (when he's around us). Which leads me to the title of this post. Ryan was in bed and we were getting ready to read his current favorite book, a Thomas the Train sound book. This book has one of Ryan's favorite characters, Cranky the Crane. Out of nowhere he knock on the book and the conversation went like this:

Ryan: "Knock Knock"
Daddy: "Who's there?"
Ryan: "Cranky"
Daddy: "Cranky who?"
Long pause as Ryan is processing....
Ryan: "Mommy Cranky!"

We all bust out laughing for several minutes!! And then Ryan proceeds to do it over and over...silly boy.
I have no idea what prompted that...because for once I was NOT cranky tonight...haha. I love my silly boy so much!!!

Monday, October 4, 2010

Baxter's 1st Birthday!

Baxter is my brother’s adorable & loving Golden Retriever.  He celebrated his 1st Birthday in style, by having a costume party with Spiderman decorations and a cake. Ryan had blast as he always does when he’s around Baxter. 

My brother’s girlfriend brought her dogs as well (although I could only get a pic of 1)


And then of course came the cake!


Yes, our family treats pets... well, like a member of the family! So of course that includes having a birthday party to celebrate. Happy Birthday Baxter!


Sunday, October 3, 2010

Children's Fest

Since it had been raining ALL week, Saturday was definitely a day we had to get Ryan outside. It was a beautiful day to do just that. There were a few options we considered, including a car/truck show but we opted for the outdoor Children's Fest. It was suppose to have lots of activities & costumed characters. We got there about an hour after it started and boy, was it packed! I'm sure every parent had the same idea though..get their kids out of the house! Of course, what did they have right in plan view of the entrance? The moon bouncies. Normally, we would let Ryan spend as long as he wanted (up to a point) in them but we noticed right away, they cost money. We could either pay $3 for one time, one bouncy  or $10 for a wristband which I gather were unlimited...but we knew if we let him do that, we probably would never get him to leave without a fight. So, we bypassed that area without a meltdown. There was plenty to see and do. We met several therapy dogs whom are brought to the public libraries & the kids are allowed to read to them (this builds up the kids self esteem). Ryan (well, Mommy did) read to one of the dogs and then went around to pet them.

this was one of the sweet dogs

Then we saw a couple costumed characters

although not sure who this is...

He LOVED Curious George



And then got to go on a Pirate Ship with Daddy. When they got off he ran up to me and said "I got treasure!" And showed me his gold coins. Dean said he got to (pretend) drive the ship too.


We went to many booths, Ryan got to either make little things like bookmarks or a worm from a stick  or play a game such as a bean bag toss for a prize. We really wanted to take him to the Home Depot tent to make a project but the line was LONG. For all 3 hours we were there! So, we weren't able to do that but Ryan (and us) had a great time. His favorite by far was getting to get inside the firetruck!

he was pushing all the buttons too..hehe


They had a toddler area with lots of toys & ride ons but Ryan was too tall to go in there and he was not happy. We had to divert his attention to the playdoh area and then bribe talk him into getting a big ice cream with sprinkles. So that's how we ended our day.