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

Monday, November 30, 2009

Post Thanksgiving & Christmas Pics

We all had a wonderful Thanksgiving and Ryan enjoyed eating some turkey, although he was pre-occupied a bit. My brother brought his new Golden Retreiver puppy and Ryan had such a fun time playing with him. There were several times that the puppy went under the table and tried to catch a snooze but Ryan wasn't far behind wanting to play! He kept saying "doggie soft" and we made sure he kissed and pet the puppy.

We got Christmas pictures taken and I was once again very pleased with JCPenney. This is the second time we've used them (first time was with his 2 year pics) and this time we joined the Portrait Club which gets us additional savings every time we get pictures taken. I love the fact that they don't pressure you to buy a package and they have really great enhancements that make the pictures even better. We are making it a tradition that we will get a family portrait taken every Christmas so Ryan will have a keepsake when he's grown and we're no longer around. Here are a few:





Since Ryan was being so patient while we picked out the pictures to order, we decided to go get a cookie for him and then decided we might as well let him sit on Santa's lap. This year was no different than last year...he went right up to Santa. This year, he said Hi! We got a picture taken and Santa gave him a coloring book and then he said "bye, tank you". Awww, I love this boy so much!

Wednesday, November 25, 2009

Thanksgiving Eve

On this day, the day before Thanksgiving, I wanted to post what I am thankful for.

First and foremost is of course my husband! Dean is my true love, my rock, the one who makes me laugh when I need it most and let's me cry on his shoulder when I need to. He has a quiet, calm personality and in turn that makes me a better person. When I get upset, he lets me be upset. When I'm happy, he makes me happier. When we met 13 years ago, I knew right away that there was something special about him (maybe a little of it was that he was wearing a cowboy hat, boots & line dancing..hehe). I'm a true believer that everything happens for a reason. You might not know it at the time, but somewhere down the road, you will. If I had not made the choices I made, if life hadn't led me down the road I took, I probably would have never met Dean....and I never would have had Ryan! He is a wonderful husband and father.





Oh yes, Ryan! How can a mother not be thankful for her son? My preemie prince who surprised us and couldn't wait to come into this world so he came 11 1/2 wks early. He even surprised the doctors & nurses the day after he was born because they found a small pinhole in his small intestine after doing a routine x-ray to make sure the PICC line was inserted properly. Ryan wasn't even showing any effects from that hole. Nevertheless, surgery was performed on my little man, weighing only 2 lbs. 13 oz. He was able to be transferred to the NICU Stepdown unit 2 weeks later, where he stayed for 7 more weeks. He went into surgery again a week before he came home, so the doctors could reverse the ileostomy (put the intestine back together). We finally were able to all come home together, 69 days after Ryan was born. I am so thankful for the memories we've made & looking forward to thousands of more memories. I'm so thankful for the things Ryan has taught me. He's taught me to be patient, walk slowly, play and play some more, laugh more and cry less, stop and listen--listen to the birds chirping or an airplane flying above, and most of all he's taught me how to slow down and enjoy the little things in life.




I'm so very thankful to have my parents, my sister, my brother and all my extended family in my life. I cannot imagine life without them, especially these past 2 years. My mom & dad have done far beyond whatever needed to be done, from driving me back and forth from the hospital to basically giving up their retirement so my mom can watch Ryan. I cannot express how much love & gratitude I have for them. My siblings, Dean's family & my relatives have been so supportive & helpful. I've never felt like I had to hide anything or any detail of Ryan's life.

What would life be without my friends? Terrible! My dear friends, some of them live close, others far away but I love all my friends. They too have been such a strong lifeline during the past 2 years. I know I can call my friends any time of the day or night and they will be there for me. I am so blessed to have such wonderful people in my life.

Of course, I can't forget my "cyber" friends. I would have never thought I would have people I'd call friends but have never met in person. After becoming a preemie mom and finding others in a similar situation (having a preemie), that thought went out the window. The support I've found with ALL my mom friends is priceless. I'm so clueless when it comes to some parts (okay a lot of parts)of parenting and having other mom's to vent with or ask questions and get advice is heaven! Hopefully one day I'll get to meet some of these great moms and our kids can have a playdate!

Have a wonderful & blessed Thanksgiving!

Tuesday, November 24, 2009

2 year molars?

Yep, I'm placing blame on the 2 year molars!! Teeth can't talk back and there's got to be a reason for Ryan's lack of sleep and attitude lately, right? Well, maybe it's just the "terrible two's" as the saying goes. It's hard to believe just a little over a week ago, Ryan was just as sweet as could be and after spending 5 straight days with him (remember, I didn't have to work due to the storm), 2 of those not going anywhere, I was wishing more than ever I could be a stay at home mom. But these past few days, he has been testing my patience (and Dean's). He wakes up at all hours of the night, takes his nap during the day but is still a grump when he wakes up and will hardly eat. He does have a cough but it's not a bad one and it seems to come and go. I've been giving him Claritin but I think once we're out of that, I will switch to Zyrtec to see if that helps. Claritin never worked on my allergies so maybe it's the same for Ryan. It's just one of those times where as a mother, I just throw up my hands and say, "I just don't know what's wrong...if anything". All I can hope, he gets over whatever it is soon. Dean and I are actually thinking about not moving him to his toddler bed just yet. He has not tried to get out of his crib and with his irratic sleeping, I don't see how moving him to a toddler bed will help the situation. We are getting Christmas pictures taken Sunday, so he needs some kind of decent sleep this weekend so he's not cranky. Here's my baby looking so cute...I look at this picture and could just hug & kiss him all day long.

In other news, Ryan had his preschool class Thanksgiving party yesterday. It was so cute to see him around other kids his age, interacting so well. I was noticing the other boys & girls and Ryan is actually the same or taller than most of the kids. Weight wise, he seems to be the same as well. That makes me feel better overall. I've always been worried that he was smaller than most toddlers (weight wise...he's got the height though) and that he wouldn't be able to keep up somehow with the other kids. I know now that keeping up, physically and developmentally, has nothing to do with weight though, at least for Ryan.

I think having him in this preschool class has been so positive. His speech has gotten so much better, he is now saying 2 & 3 word phrases and he likes to draw & color whereas before, he wouldn't have had the patience to sit down long enough to do that. He made an art project at school and we were able to order it on different objects such as a mug, t-shirt, mousepad, etc. It's a porcupine and it's body is made from Ryan's hand (turned sideways). The feet, nose & butterfly are Ryan's fingerprints. It's so precious to us, so of course we ordered several items!

Monday, November 16, 2009

Fight for Preemies

Today, November 18, 2009, marks the day thousands of people from around the world will unite to blog about prematurity. The goal is to help spread the word about Prematurity, which is the #1 killer of newborns.

I had a preemie. It has changed my life forever. If I become pregnant again, I will never know what it's like to have a "normal" pregnancy. One without fear, one without the "what if's", one without anxiety. I don't ever judge people just by their looks or even actions...because I just never know what they are going through. Maybe they have a son or daughter in the hospital or even worse, someone close to them has passed away. I remember just going to the grocery store was so painful for me when Ryan was in the NICU, yet I felt like I needed to go. If I couldn't be at the hospital, I wanted to be with Dean. The first time we went, we were standing in the deli line and there was a couple with their little girl. She looked to be several months old and her daddy was playing peek-a-boo with her and she just had the cutest little laugh. I started crying and had to leave the line. People probably looked at me and wondered what kind of crazy person I was, crying in the grocery store. Memories like this is one reason I don't judge people...like I said, one never knows what someone is going through and it has changed my life forever.

The March of Dimes has also changed my life. Thanks to a local radio station that raises money for the March of Dimes every year, I did know a little about them, however; I never truly knew how important they would be in my life until I had Ryan. They were the ones who funded research to develop Surfactant. Surfactant is a chemical compound that proved to be essential in the proper development of lungs but not enough is produced until the fetus is in it's final weeks of a full-term pregnancy. When my water broke at 28 weeks (a full term pregnancy is 40 weeks), the doctors injected me with steroid shots. These shots, also known as Surfactant Therapy, helped develop Ryan's lungs. To me, this helped save Ryan's life. Without this development, Ryan may have gone into respiratory distress once born and possibly died since he was so premature. Instead, Ryan was only on oxygen for one week and was then breathing room air! It was such a miracle!

So what can you do to help prematurity? For starters, just visit the March of Dimes website at www.marchofdimes.com. What is the March of Dimes you ask? They are the leading nonprofit organization for pregnancy and baby health. You can read about the history, their mission, become educated about pregnancy & newborn health and of course, learn about prematurity. Did you know 543,000 babies are born premature each year? 1400 babies born too soon EACH DAY! One baby born too soon is too many! Premature infants face many problems, some of them lifelong. Just SOME of the complications in premature infants include:

1)Bleeding in the Brain: Most common in babies born before 32 weeks of pregnancy. Bleeding in the brain is called intraventricular hemmorhage (IVH). It can cause pressure in the brain and brain damage.
2)Retinopathy of prematurity (ROP): An eye problem that occurs mainly in babies born before 32 weeks of pregnancy. In severe cases, treatment is needed to help prevent vision loss. Ryan actually had this and was seen by an eye doctor until he was 4 months old. Luckily, his eyes developed normally but many babies aren't so lucky.
3)Necrotizing enterocolitis (NEC): A potentially dangerous intestinal problem.
4)Patent ductus arteriosus: A heart problem that is common in premature babies. Untreated, it can lead to heart failure.

What are some things you can do to help prevent prematurity? If your pregnant (or know someone who is):

Get good prenatal care
Eat well
Drink lots of water
Take a prenatal vitamin with Folic Acid
Exercise (with your doctor's permission)
Know your body and trust your instincts--if you feel like something is not right, be persistant and get it checked out.
Find out more about preventing prematurity and what the signs & symptoms are of preterm labor here

For the past two years, I have participated in the annual March of Dimes, March for Babies. This walk is the biggest fundraiser event for the March of Dimes and allows them to continue to research and fight for all babies! I will continue to walk every year that I can and help raise as much money as I can. Here is the video I used to help raise money for this year's walk back in April.


If you know someone who participates in fundraising efforts for the March of Dimes, please support them if you can. If you can't support them by making a monetary donation, help spread the word about their fundraising efforts. My friends and family do this and it means the world to me that they care enough to take the time to forward on my message. I have received numerous donations because of this. Every dollar counts.

Through the March of Dimes research, one day all babies will be born healthy and no parent will ever have to know the fear of having a baby born too soon. Today, Ryan is a happy, healthy 2 year old despite being premature and we have the March of Dimes to thank for that.

Friday, November 13, 2009

Talking

I was finally able to get a short video of Ryan talking. Usually when I turn on the camera, he just wants it to play with all the buttons.


He's been such a delight despite being cooped up for a couple days. We did however; go to my parents for a little bit today and he enjoyed all the toys in the "toy chest" (aka dresser).

Thursday, November 12, 2009

Yucky outdoors=Fun indoors

We had a Nor'easter roll through today..well it's actually still here but most of the rain is gone. My city and the surrounding cities have many waterways, hence LOTS of flooding when a bad storm comes through. So, needless to say, most places were closed today. Dean had to go in of course since he is the maintainance supervisor at the apartments so it was just me & Ry today.

On days like today, I like to bring out the toys from the closet that Ryan hasn't played with in a while. It keeps him satisfied and he doesn't seem to get bored. Getting bored = a cranky toddler! Here's just SOME of the toys:

We played with his puzzles, read books, played with his trains and raced his cars on the kitchen floor. We were both tired by the afternoon & luckily he took a 3 hour nap so I could clean up and then relax for a bit!


and then later on he found Daddy's hats:

Wednesday, November 11, 2009

PT & Ryan's Speech

Ryan’s only been going to Physical therapy for a month but I can already see improvements in his ability to do certain things. Yesterday , I was able to go with him and see some of the things he does and talk to the therapist about what we could work on at home. He really has a great time and probably thinks it’s just playtime. He does so well letting the therapist stretch his leg muscles (something he does NOT let us do without a fight at home) and has a fun time “playing”. There is a padded glider swing similar to this:

that he stands on (holding onto the ropes)with the therapist sitting behind him. She moves the swing back & forth, side to side and in circles. This helps with his balance & strengthens his legs. To work on getting him to jump, there is a trampoline in which they will practice bouncing on. His favorite object though is not a piece of equipment, it’s a toy. A play kitchen! His therapist has used this to her advantage though and incorporates different activities that involve the play kitchen and it’s play food. One example is she uses a small step and has him take the food one at a time back and forth from the kitchen to a bench and has him step on and off the step each time. The kitchen is next to a set of steps (stairs) so she has him walk up and down the stairs as well. He is getting better at using his left leg to step up and down and also alternating his legs going up and down. The thing that I got really excited about last week was that he kicked a ball! He has a soft soccer ball and we’ve tried working on getting him to kick it, but he just didn’t seem to get it. Last week, I asked him to kick it and after I kicked it to him, he kicked it right back!! I was awestruck because I didn’t expect that.

I am also amazed at how much Ryan’s speech has improved within the last several weeks. It’s so wonderful to finally hear him saying 2 & 3 word sentences and new ones every week. For the first time, I don’t feel stressed over his speech. Our Early Intervention Coordinator came to the house so I could update some paperwork and she was also amazed at how far he’s come. She even said, he probably won’t qualify next time they do the assessment (in January). I am almost sure preschool has helped..heck, it isn’t hurting. The reason I say this is because last weekend he started saying “mine” over and over again. I don’t even think he knows why he’s saying it or what it means. He usually starts saying it when he’s grumpy or tired. I can only reason that he’s picked this up from school, probably the other kids either taking toys from Ryan or vice versa..although probably the latter if it involves a car!

Thursday, November 5, 2009

Prematurity Awareness Month

November is Prematurity Awareness Month, hence why my blog is turned purple. Remember this little preemie prince?
Many of you already know Ryan’s story about how he came into the world at 28 weeks, 5 days gestation--11 1/2 weeks early. If not, check out my early blog posting here for the beginning and here for his birth story. It’s been 27 ½ months since I unexpectedly gave birth to our precious boy Ryan who weighed 2 lbs. 13oz. but the emotions still get the best of me when I think back to those days leading up to his birth and the 69 days he spent in the NICU. That’s why I want to make everyone I can aware of the March of Dimes and more specifically their efforts to find out what causes prematurity & how it can be stopped. Click hereto find out the facts about prematurity and then on November 17, 2009, join me along with thousands of bloggers from around the world who will blog about prematurity and help spread the word.

Monday, November 2, 2009

Halloween 2009

Ryan had a wonderful time Halloween day. We went to Michael’s for their free kids craft. The kids got to make a felt spider to attach to a magnet picture frame and draw/color the picture that went in the frame. Ryan had fun coloring and I had fun laughing at myself trying to make a spider from pipe cleaners & pompoms. Dean ended up taking over because I was a clutz and dropped the spider and got glue on my shirt! I think it turned out pretty good.

He got a good nap in and we were ready to tackle Trick or Treating. We had practiced getting Ryan to say Trick or Treat and he actually did say it one time but mostly always said “treat”. We met my godson & friend at the mall before going to my parent’s house. Ryan had a fun sticking out his basket and getting the candy. By the time we got to my parent’s house and went around to the houses in their neighborhood (where I grew up by the way), he was getting good at saying “trick treat” and “tank you”. We also, got him to shake his tail..like a fish! I’ll upload a video showing that but in the meantime here’s our little Nemo!


It's so amazing to see how much he's grown over the last 3 Halloween's!
2007

2008

2009