Sunday, July 31, 2011

Who's blog is this anyway?

Well, it looks like I just might have to change the name of this blog from Roman's blog to include Addy as well. We went to the cardiologist on Tuesday with Addy, and it turns out that her murmur is more than a murmur.   She has a hole in her heart..   The hole is not very big and the cardiologist thinks it might close up on it's own, but none the less he will keep an eye on her. The good side of this is that she will now qualify to get an RSV shot. I guess being born at 35 weeks isn't enough alone to qualify you for the shot. Roman had them and I swear by them. He didn't get his first cold until he was two. I sure wish they could figure out some of these mysteries to CHD. I might never know why, but seriously I don't do anything that would put me at risk. Then there are mothers who drink and smoke and their children are perfectly healthy. Darn it! Well, I guess it is just a waiting and watching game to see if it goes away on it's own.

Sunday, July 17, 2011

New addition

There is a reason why post have been almost all but absent on this blog. We added a new addition to our family on June 20th, 2011. The pregnancy was filled with many visits along with the typical morning sickness. I think most heart moms can relate to me when I say we held our breath most of the pregnancy in fear that she would also have a heart condition or something worse. We only slightly relaxed when the ultrasounds confirmed all was OK with her heart. However, I guess it turns out we are not completely out of the clear. When Addy was born she was born 5 weeks early. It seems her heart beats just a little faster than normal and she has a murmur. So it is off to the cardiologist once again. Hopefully, it is something she will grow out of and not something more serious. If you are reading this, we can use your prayers. I almost forgot, her name is Adelaide Louisa and she was 17 inches long and 4 pounds 3 ounces. She was born via an emergency c-section. I guess the placenta stopped working and thus she stopped growing. I also had low amniotic fluid. The good thing is that because of Roman I got extra ultrasounds, and was considered high risk. So in a way, Roman saved Addy's life.

Wednesday, May 25, 2011

4 years ago!


4 Years ago, we were given an amazing gift. A rebirth of our son. At 5:30 am we handed over our son to the surgeon who would repair his heart. It was the most terrifying thing I have ever done in my life. What if he didn't make it? We held our breath until we got the call from the nurse saying he made it off by-pass. Then it was another two days before we knew everything was going to be OK. He was out of the woods. See, Roman was born with a Congenital Heart Disease called Tetrology of Fallot.  This is a condition where not only is there a whole in the heart, but the pulmonary and aorta valve are not attached.  Thankfully, this could be repaired.  He still needs additional surgeries, but we are grateful for every day we have with this little boy.  He is such a joy!  I love when he makes up little songs and sings.  I love how kind he is to everyone and his giant big smile.  I love how he gets obsessed with an author like Dr. Seuss or Eric Carle and wants to read everything that author has written.  He is totally obsessed with Super Hero's and the funny thing is he is my Super Hero.  Thank you Heavenly Father for the gift of life! 

Saturday, October 16, 2010

October update


Yahoo! It turns out Roman will not need surgery this year. It is truely a miracle because the last visit they said his valve was not growing and now it has recovered and it keeping up with his body. Even the cardiologist was really surprised. He had a huge smile come across his face as he told me the news. He also wants to hold off on doing the MRI in hopes that we will not have to sedate Roman to do the procedure. That sounds good to me. Since having Roman, I don't take things for granted. He truely is a miracle. On another Note, Roman is the sweetest boy on the planet. Full of love, hugs, and kisses. He loves to cuddle with him. His favorite movie right now is finding Nemo. I think we have watched it three times this week. He is also totally into puzzels and can sit for hours doing them on our living room carpet. He also has a great imagination and loves to play with his Super Hero figurines. Thank you everyone for your prayers!

Thursday, October 7, 2010

Nervous!

Tomorrow, Roman goes in for his cardio appointment. It has been six months since his last visit. Do these appointments ever get easier. I guess the reason why I am a little nervous is that on the last appointment they said his pulmonary valve looked very small. I didn't write about it because well I have been in kind of a denial that he will most likely need another surgery in the next year or so. I guess we were really hoping that he would make it to his late teens so that the technology would advance and so that he could get the mechanical valve. I really don't want to be on this road of needing one surgery after the next as he grows. The only good thing I can see about the whole situation is that maybe he can have his next surgery before entering Kindergarten, so that he will not have to miss any school. Otherwise, all is going well with Roman. He loves going to preschool. He is really forming friendships and loves his friends Peter, Tucker, and Joshie. Totally into puzzles and will sit doing them for hours. Totally into Super Hereos and can't wait to be Wolverine for Halloween even though I wanted him to be something cuter like an Indian or a Spider. Still not a very good eater and hasn't gained any weight in the last year or so, but we keep trying. Hope all is going well with everyone else. Wish us luck tomorrow. Kelleyn

Wednesday, July 14, 2010

Roman "Each Day is a Gift"

A few months ago, I submitted a photograph of my son and I to a contest for photos that best depict being a mother. Our photo didn't win the contest, but last month they came back to ask me to write up the story behind the photo. See our third son was born with a Congenital Heart Disease and we didn't know if he would live or not. You can find his story featured on the Power of Moms blog.

http://www.powerofmoms.com/articles/each-day-is-a-gift.html

Saturday, February 13, 2010

Happy Birthday Roman!

Dear Roman! You bring us so much joy! Did you know I wanted you to be born on Valentines day? However, there was no room at the Inn (hospital), so we had to wait until the next day. However, after getting me checked in they realized that you were a cardiac baby, so they told me to get some sleep because they didn't have any cardiologist on call at the hospital that late at night, so you were born on the 16th. You sure gave us a scare with your 12 day NICU visit. We almost thought you might not make it, but finally you decided it was time to come home and meet your brothers. I can't help but smile when I look at you because you are always so happy. I do even mind that you know what you want and don't back down. I am glad. I think this will get you a long way. You are such a good friend to all you meet. You still don't like to get your hair wet, you love strawberry milk, and chicken nuggets. You love to be outside and can walk the whole 1 mile trail at the park. You have no problem standing up to your brothers and for the most part they let you have your own way. Over most toys, you love to paint and play playdough. While at one point this year we thought you might need speech therapy, we can't get you to stop talking. You kind of skipped the individual words for full sentences. The other day you surprised me with telling me about something that happened at Halloween. We love you! While we are sad to see you grow up we can't wait to see what the next year will bring us.
Love, Mommy and Papa

Hip Hip Hooray!
You are 3!
Happy Birthday Darling Boy!
You are the light of our lives!
Photo taken by Butler Family Photography.

Tuesday, February 9, 2010

Off to see the Govenor CHD Awareness week

Roman and I went to the Capitol on Tuesday with other children who have Congenital Heart Disease and their families to bring attention to this cause that effects 1/100 births. It is the #1 birth defect and they don't know what causes it. We are hoping to find more money for research that we can love the number of babies born each year with this condition. The photo sucks because the assistant to the Governor took my camera before I could set the settings and tell her how to use my camera, and I could run over to help her because there were film crews there from the local news channel. I am hoping the Governor's photographer was able to get a few could photos and I can replace mine with a better photos. Do you see Roman and I sitting next to the Governor?

Friday, December 25, 2009

Merry Christmas 2009!

We would like to wish you a very Merry Christmas and a Happy New Year!

Tuesday, October 13, 2009

All is Well!

It has taken me a couple of weeks, before I was able to write this update. Three weeks ago, we visited the cardiologist and everything seems to be going well. Infact, if he has another great visit in 6 months, then we will be switched to a yearly visit program. You probably are wondering why then it has taken me a couple weeks to post this good news? I learned that Roman will most likely never be able to ride a roller coaster. While this seems trivial in the grand scheme of things, I couldn't help but cry every time I thought about it. Not so much that he can't ride roller coasters with his brothers, but someday he will be a dad (at least I hope some girl will fall in love with him despite he has CHD) and he will never be able to go on the rides with his children. I kind of knew this in the back of my mind, but to actually hear it from the cardiologist broke my heart. Sometimes no matter how hard one tries to stay positive about everything it is hard not for just a moment to cry about what will never be. For now, though I am looking at the positives and that is Roman is finally talking and in full sentences, so this is something to be happy about. No speech therapy -Yeah! I was starting to worry. All is well! All is well!