Thursday, March 29, 2012

Prayers for Lauren

This is sweet baby Lauren

Lauren is 7wks old and is having open heart surgery today, the same surgery that Mason had just 6 months ago.

Sweet Lauren is in need of as many extra prayers as possible today. Not only prayers for a successful surgery, but also for her parents and family. That they have peace on their hearts today as they hand over their little girl to the surgical team. And lastly, prayers for a quick recovery.

This was Lauren's Moms post from their blog

I am terrified. I can't make myself say it out loud, but what if she dies? I am so scared. I wish I could take back every ounce of sadness I felt when we found out that Lauren had Down syndrome. I wish I could tell my 18 weeks pregnant self that she would be a true gift. I love her so much and I honestly feel so LUCKY to have the honor of parenting a child with Down syndrome. And even luckier that it's my sweet, snuggly, redheaded Lauren Hope.

We have truly the best team of doctors, nurses, anesthesia people, and etc tomorrow. We also have God! I truly believe that Lauren has so much to teach the world and I'm honored to help her learn to do just that.

Please pray for the medical professionals working on Lauren, pray for peace and calm in my part and pray that my beautiful daughter wakes up to a healed heart tomorrow.

Lauren is now on the bypass machine, of took a while to get the extra IV started (no surprise there!) Everything is going as expected and we should get another update in an hour or two

Tuesday, March 27, 2012

A beautiful day in the neighborhood.

We have been enjoying some BEAUTIFUL weather here!

Almost could say its perfect....and thats just how life is feeling right now.

No grey clouds hanging over us. Just enjoying everything we have been blessed with.

Tuesday, March 20, 2012

World Down Syndrome Day


To represent the 3rd copy of the 21st chromosome.

1 YR ago today we were in a different place.

A place full of worry and tears. This time last year we were still being told that Mason may not survive. He was developing cord pressure problems, but had made it past the 30wk mark! We were praying so hard.

I actually didnt even do a post about world down syndrome day last year because honestly , I had too many things to worry about. Masons cystic hygroma was still a uncertainty and we were just then starting to have hope that he might make it to birth.

Looking back, it was all a blessing in disguise. We didnt worry about the Down syndrome, we just worried about the hygroma. Then when it healed..... we were just so thankful it was healed that the DS still didnt matter. We almost lost our son. If it takes him having DS to be here with us, then that's no problem to us.

So this year we will celebrate World Down Syndrome Day. We will rejoice in advances in care and compassion there is for people with that extra special chromosome. We will rejoice that our Mason is here to celebrate it with us.

Thank you for opening my heart and my eyes sweet baby boy. Momma loves you.

Join the World Down Syndrome Day Blog Hop
My stubborn little Miss
Our Cora Bean

Saturday, March 17, 2012

No Milk for You

Mine and Mason's breastfeeding journey has came to an end...almost.

Before Mason was born, all I read was that babies with Down syndrome could not breastfeed. That due to their low tone they simply could not breastfeed. We were actually already planning on Mason needing to be tube fed.

When Mason was born almost 6wks early, He was kept in the NICU for 11 days. He was given bottles of pumped breast milk while he was there. If he didn't finish a bottle, it was given to him by NG tube. We tried so hard to get him to drink all 55mls of milk. We rubbed his back, undressed him, tickled his feet, ect...ANYTHING to keep him drinking that bottle! Our golden ticket out of the NICU was Mason taking all his feeding without the use of the NG tube. We tried breastfeeding several times in the NICU but since he was so sleepy still, Cory and I made the decision the just do the bottle till he was home.

Finally Mason was able to take all of his feeding and we were able to take our bundle of joy home. Only problem was, he was still on a bottle. It took us about a week and a half to trasition him from bottle to breast. His only real problem was sleepness. He had a good latch. It was that he had no stamina. Add in the fact that he was in heart failure... he just needed the most milk possible in the easiest way possible. And for Mason, that was breast feeding. He got better and better at it ( it didnt hurt that I was DETERMINED) that he was going to breast feed. He could nurse and be done in 15 min or take a bottle and take 30-40min. It was a no brainer. Soon he was only breastfeed. Even after heart surgery, when they finally wanted to give him something to eat. The nurse made a bottle and I kept telling her he wont take it.... 20 min later ( and no milk from the bottle) she let me nurse him...and he did great. Actually he did AWSOME, he could out nurse other babies in the breast feeding clinic. He could take in 8+oz in 15 min. The boy was good!

Then our journey took a wild turn. Through a trial of yogurt...We found out Mason is allergic to Milk protein. He cant have Milk, Dairy, Soy, or anything made with Dairy. We even tried goats milk, and that ended in tummy aches and throwing up for a few hours...

So since we were drawing close to the 1yr mark, we talked to Masons peditrican about what to move him to when we wean. So they sent us home with some samples of formula. No Luck.

He got tummy aches from the 3 samples the gave us. I was really starting to worry that I was gong to have to breastfeed till he was 7! Then finally the hospital diatician got in touch with us and gave us two sample of amino based formulas (non dairy and non soy) and Mason did well on them. And it couldnt of happened at a better time!!!

My supply was starting to dwindle... and we started givnig Mason a few oz of formula before bed. Then Mason got sick for a few days with a nasty bug. He didnt really eat for those 3 days. If you know anything about breast feeding.... its all about supply and demand. And my body had no demand, then no supply. Our attempt at making it to a year was slipping through my fingers. I only had 6wks left.....

But I was handling it well. I had been dairy free for almost 5 months. ( Mason's sensitivity was so severe that even I couldnt have dairy.) I thought I would be happy to get to enjoy icecream again...but I was also sad about not making it to 1 yr.

So we comprimised... Mason still nurses every morning. Why? Because Im too lazy to get up and make a bottle. And because I love our special time together.

So I "Kinda" may make it to a year!!

Take that bad internet information! Yes babies with Down syndrome CAN breast feed.

Wednesday, March 7, 2012


The "R" word

That hurtful word.

Today we fight to end the use of that word.

When you use the word "retard" or "retarded", your not only hurting me and my family. Your hurting anyone who has an intellectual disability.

Were are making a change, taking a step in a new direction. So were asking you to make the pledge to SPREAD TO WORD TO END THE WORD

"I pledge and support the elimination of the derogatory use of the r-word from everyday speech and promote the acceptance and inclusion of people with intellectual disabilities."

Next time you use the word, hear the word, or see the word.....

Think of Mason.

And make the change.

If you sign the pledge, leave a comment on our FB page or on here! THANK YOU!

Thursday, March 1, 2012

Mr. Smiles

Mason has a nick name around our house....
Can you guess what it is.....
Mr. Smiles. It fits him perfectly...

Also.. Mr. Smile is OBSESSED with standing.