Noah's 5th Brithday!

My sweet boy turned 5 today! He is my miracle baby! His orginal due date was April 7th. I had a pretty normal pregnancy with him up until the third trimester. Then I was put on bedrest due to preterm labor. So i stayed on bedrest till February 23 when i went in for a drs appt and had extremely high blood pressure and that the only way to get it down was to deliver Noah. So 6 weeks early he arrived 6 hours after i was induced! He was born February 23rd @ 646 pm. He was born blue and was whisked away to the NICU. When i was was finally able to see him 6 hours later and the news was not good. He was such a big baby at 8lbs 8oz and being so big can greatly affect the outcome. The next morning the news was even worse they had given him 2 doses of surfactant which is what your lungs are suppose to make they minute you enter the world. They did not work. After 2 doses they tend not to do a 3rd. They were preparing us for the worse. I prayed like i had never prayed before. It also happened to be fat Tuesday. They next day we had visitors from St. Paul and did the ashes. I went to check on Noah before i was discharged and walked into the NICU and was greeted with a nurse holding my baby boy! no vent anymore! what a blessing. I look at Noah everyday and am grateful for everyday that i have spent with him~

Its a BOY!

I had my 20 week check up with my perinatologist (sp). Its a boy Logan Daniel! I am so excited i will have three sweet boys and one little princess. All of Logan's measurements are great. He measures about two weeks a head already. Which all of my boys tend to be on the larger side. I have been put on restrictive activities! which for those of you who know me its very hard for me to do. Because Logan is already so big he is putting a lot of pressure on my cervix which has been sewn shut! But i have to go in monthly for sonos to make sure it stays that way. At 32 weeks i will be put on permanent bed rest to hopefully get me to 38 weeks. Which Logan will be lucky enough to share his Birthday with his very big brother Cody! Please pray that i do make it to 38 weeks. With the other boys i did not.

Amelia's one year dr. appt

Miss Amelia had her one year check up on January 29Th. She is so different from the boys. They have always been top of the chart for weight and height. Amelia on the other hand is barely on the charts! She is 28in and weighs on 17lbs 8oz. She falls in about the 20Th percentile for her age. The family has nicknamed her Thumbalina because she is so little. Other than that she was as healthy as could be. She will be getting her blood work done to make sure she is not at risk for what the boys have. Which we do know she is not. She is though a possible carrier for the disease.

Bubble Boys

To my friends who keep emailing me the wonderful news about the gene therapy for child with this disease.
My boys do have Bubble boy disease but there are 2 different forms of it.
Sever Combined Immune Defficincy (sp?)- This is the one that the "gene therapy" will work for, These kids are missing all of their immune systems and it typically does not very in which parts are missing. It is genetic which means both parents have to have the recesive gene.These are also the kids that will not leave the hospital until they have recieved a bone marrow transplant. The State of Wisconson is the first state that will start testing all newborns at birth for this disease! Which is a huge deal. It means that these kids will get the treatment that they need right away!
Common Variable Immune Defficincy- This is what my boys have. Also known as primary immune defficiency. They are still trying to identify all the genes that cause this disease. 90% of the time it is genetic, like in my boys case, It is passed from Mother to son. Very rarely is it passed to a girl. Amelia more than likely is a carrier like me. No one child with CVID is missing the same parts of their immune system. We as parents do live with the fear of them getting that one infection that will kill them. We do what we can with IVIG infusion and preventative antibiotics, Theses kids still get very sick even with all that.
I am a big believer in giving blood it helps to save these childrens lives. It takes roughly 50,000 (not a typo) To get 5 grams of IVIG for each of my boys.
Noah was 2 when we found out. He started on treatment right away. Wyatt started getting tested right after that. His immune system was low and we treated it with preventative antibiotics and it seemed to keep him healthy for the most part, Then When he was 1 he got strep and it wiped out what good immune system he had left.
Noah has been doing IVIG for almost 3 years now.
Wyatt for a little over a year. I will try to get some pictures to put up of them in the infusion office they look very cute with their blankies and animals watching movies!

Noahs School play!

Noah had his first school play on January 15Th. His school play used all grades from PreK thru 5Th grade. They were telling the history of the USA. Noah's class sung about Yankee Doodle! It was so cute. I couldn't help but get teary eyed while he was up with his class singing. He has come through so much in his short life. When he was born we did not expect him to make it. Then again when he was almost 2 and was diagnosed with common variable immune deficiency and at that point thought his best option was a bone marrow transplant. He was not responding to the normal treatment for CVID but within a matter of weeks his body started accepting the infusions! But i am off the subject now. He was so proud everyday when he would come home from school with his "homework". Which was to practice his Yankee doodle song. Up on stage he was easy to pick out! He was the whitest kid up there! He is on the left first row 2nd in. I am so proud of him. He knew all the words and actually sang!

BABY #4

I had my OB appt. this week and we did a sono to see how things are going. I am due July 5th but more likely the week of June 22nd. I never make it much past 37 weeks. Baby looks great. He/she was about 5 oz, and right on schedual for how far along i am. I do have sono pics and will post them soon! I have a great picture of he/she's foot. I have decided with this one i am not going to find out. I already have 2 boys and a girl and still have everyones baby clothes.

Amelia turns 1!

I cannot believe it has been a year since my baby girl was born! She is still so very little. Which is fine with me! She was born on January 11Th 2008 at 1:46 pm. She has changed so much in a year. Her personality has blossomed too. She is sweet and loves her brothers they can get her laughing and it is so cute. She is also my loudest i think. I guess with 2 big brothers you would have to be! She loved her birthday dinner of pancakes (which are her favorite) and strawberries and then for desert was a yummy chocolate cake! She got from her Nana her first American girl doll. It was the 2008 doll of the year who's name just happens to be Mia, which is what we call Amelia!