Friday, December 26, 2008

Merry Christmas

We hope everyone had a great Christmas!! I know we did. It was great spending time with both sides of the family! We know Malachi had a great time too! He didn't want to sleep! And we are paying for it today!

I will post pictures when I have more time!!

Sunday, December 21, 2008

1 Month

Peewee has been home with us for 1 month (on last friday). Crazy huh? Josh and I feel like the time has flown, but we also feel like he has been with us all along! Malachi has changed our lives for the better!




This is a picture from the 1st time we met him. He was only 6lbs. And had only been out of the hospital for a week. He was about 3 months old. This is the momment Josh and I feel in love with our son!








This was our second visit and our 1st family picture! I think he was around 7 lbs when this was taken. We went and visited him every weekend for 2 months. It was a long time of waiting and working to complete all the paperwork. It seemed like he would NEVER come home!





And here is our 2008 Christmas picture! He is 10.58lbs and getting stronger every day. He has been home a month and has enjoyed getting settled in. We can't wait to see what the next months hold. We love you little man!

Thursday, December 18, 2008

Surgical Consult.

We got up super early and headed into Chicago for Malachis surgical consult on wed. After a lot of waiting we FINALLY got to speak to his surgeon (who we LOVE). He explained that the wall that separates the 2 ventricles of his heart was not there causing blood to "swish" everywhere and not properly circulated. Their plan is to go in and patch the hole (he has a little bit of the wall at the bottom and top of his heart, but it does not connect which makes a hole) with Gortex. Josh was pretty excited about this and said that Malachi was going to have a waterproof heart. (It was nice to have some comedic relief, i was feeling overwhelmed and on the verge of tears). There is another issue that they are going to have to fix, he only has 1 valve. So they are going to make 2 valves form the one. The actually surgery should take about 5-8 hours but the prep time will at up to 2 hours onto that. Because they are operating on his heart they are going to have to stop it. He will be hooked up to a machine (i forgot the name of it) to keep blood flowing to his brain. Because he is so little he will be needing a blood transfusion. He does not have enough blood to run through the machine. They will be braking his chest bone to get to his heart. I am scared. This is something no one should ever have to go through, let alone a 5 month old. He is a fighter and I know he will fight through this too! He is my Hero.

So we have to go in January 19 for some pre-op stuff but the surgery will take place on the 20th. We are waiting to get in contact with the social worker to see if there are any openings at the Ronald McDonad house that is close by. His recovery will be 7 to 10 days from the day they take the breathing tube out.

We need you to pray! Pray for the surgeons, nurses and Malachi. Pray for our family as this will be VERY difficult time. Pray for finances so that we don't have to worry about that too! We will be making a prayer card and mailing it to family and friends. If you want to be included e-mail me with your address. Thank you for all your support along the way. We look forward to the day when this is all behind us and Malachi is a Healthy little boy!

Tuesday, December 16, 2008

smiles and giggles

Last night josh and I got our first smile from Malachi. He smiles in his sleep, but never while he is awake...till now. We were playing the shake your booty game with Malachi when we let out a HUGE smile. A few momments after that he began to laugh. It was so cute and just melted our hearts.

Tomorrow we go to Rush for his surgical consultation. We will be talking to the surgons and nurses who will preform his AV canal surgery. They will give us the results of his carido cath and hopfully show us some of the pictures! We will also be able to pick the date of the surgery. We are hoping for the week after Christmas because Josh has it off from work. I will post the results tomorrow night! Please keep praying for us!

Sunday, December 14, 2008

Graduation

Malachi in his little man outfit at Joshes graduation!


The stage!

Josh with his hood, waiting to get it put on. He was sooo happy.


Getting the hood
put on. (Sorry its so blurry)



Diplomia!

We are so proud!

The hood, light blue is for education.
The family!



At dinner with the extended family to celebrate Joshes HUGE accomplishment!

Wednesday, December 10, 2008

making progress

Malach is eating GREAT!! I am so happy that spoon feeding him has been this easy! We have also been working on his neck strength and he has been sitting up in his Bumbo chair really well. He still has a way to go, but we like to celebrate each step of the way! Way to go Malachi!!!

I am taking peewee to get Christmas pictures tomorrow. Whish us luck, at our last photo session he didnt want to participate.He turned his hes the opposite way and refused to look at the camers! I hope tomorrow goes better.

Other than that nothing new going on in the Horton house. We are tired of the cold and ready to go on a family walk. We will have to wait a few more months for that one. Untill then we will picture palm trees and beaches! (not to mention a fruity alcoholic beverage with a little umbrella)

Monday, December 8, 2008

Thankful

Today we had our baby shower at Joshes work. It was great to see everyone and show off Malachi to them. We got a TON of stuff and we are so thankful for everyone and their willingness to give to our son. It is a blessing to be surounded by people who love us and support us. We are thankful!

Last night we tried giving Malachi baby cereal. He didn't really know what to do with the spoon or the new consistancy. He didn't seem interested. Tonight we tried mixing it with a little bit of baby applesauce. He did a little better. I was told giving him a little bit of applesauce would help with his poops. Only time will tell. Anyone have any advice on feeding children with DS? Any tricks?? Let us know! We are thankful that we are learing as we go!

We also got a call from the cardio department at Rush. They set up our consultation for next week on wed. We will head to Chicago, yet again, and meet with his team of surgons and get a "plan of attack" figured out. We are thankful for the cardio staff at Rush and their eagerness to get the surgery over with.

On a side note, my hubby graduates with his Masters of Education this weekend!! We are so proud of him and all the sacrifices he made to reach his goal! I can't wait to see him walk accross the stage and get his diploma. It will be a proud momment for our family and a lesson to our son that with hard work anything is possible!! Way to go Josh!!

Saturday, December 6, 2008

the big 5 months

Malachi was born 5 months ago today! He weighed 3lbs 13 oz. He had to have oxygen via an oxygen hood, he had congestive heart failure, respitory distress, he was born substance exposed, had a hole in his heart, failed his hearing tests, and had down syndrome. He spent the first 2 months of his life in the hospital and the following 2 months in a group home for children with special nedical needs. He hasnt seen his mom since he was 2 days old and has never met any of his 8 sibblings. But today he is 10.5lbs, 22 inches long , and rolling over. He has a mom and dad who love him more than anything. He has a home, with 2 dogs, a pool, a room full of books, clothes and toys and a sense of normalacy. He has a future full of endless possibilities and a family that will stand behind him and cheer him along. He has a church family who has been praying for him and loving him. He has come a long way in 5 months. He still has some hearing loss, he still has to undergo open heat surgery, and he still is a fighter. 5 months ago the world became a better place and we became better people. 5 months ago God put on earth a little boy who had everything working against him who had every reason to give up. 5 months ago he chose not to. 5 months later, we are enjoying the benefits of his strength, courage, strong will and love. And today we could not be more thankful for the journey Malachi has taken, each step has molded his heart and mind. Each challange he has overcome has proven that he will rise above the negitivity of the world.

"Thank you for a wonderful 5 months of life baby boy! You deserve the best in life and we are confident that you will not give up until you get it! Continue to be strong and remeber to love!! You are perfect in every way and we love you to the moon and back! Happy 5 month b-day peewee!!"

Thursday, December 4, 2008

success

Malachi's cardio cath was a success! The docs were are pleased with the procedure and found nothing "unexpected." Malachi was a trooper and showed very little signs of pain. Because of his medical history the docs wanted to keep him over night. So that means the momma slept (more like tried to sleep) on the cot next to the crib. Needless to say i got very LITTLE sleep! They ended up needing to put him on oxygen for a short time and he did not like it! But he delt with it and ended up falling asleep. I am so proud of this little man and his strength!! He is one tough cookie!

He is back to his old self today and taking to me right now as I type. I wonder what he is saying? I wonder if he likes his home?

Anyways, we should be getting a call next week to schedual a meeting with the surgons and nurses who will be doing the heart repair surgery. At this meeting we will discuss a date and get it scheduled. THe cardio nurse told me today that we should plan on at least 10 days of recovery! Yikes, that is going to be a VERY long 10 days. We are going to need visitors ( and money to eat at the hospital for 10 days! Yikes!!) to keep us sane!

I will pose pictures when I have more time!

Monday, December 1, 2008

Next on the agenda...A cardio Cath

Our sweet little boy is going in for a Cardio Cath. This is where they make an incision in his thigh and send a camera up to his heart through his pa moral (i think that's how you spell it) artery. While they are taking pictures they will also be measure pressure, blood flow and oxygen levels. This will give the surgens a better idea of the extent of his heart condition before they do the surgery. Josh and I decided to stay at a hotel in Ohare tomorrow night. We heard there is supposed to be more snow and being that we have to be at the hospital by 7 am, we figured being closer would be the best idea.

I am home tonight...alone (josh and Malachi went to Mens group, so i could get bags packed!) and I have to admit that I miss the little guy. We spent all day together and I really enjoyed more bonding time with him. I was reflecting back over the past few weeks and can't believe all the twists and turns we have been though to get Malachi home. Although majority of it was very difficult, I would not change the journey for anything. Those struggles prepared us for what we are about to face. Open heart surgery on an infant, recovery from the surgery and even the procedure on wed will be very drianing. I can only imagine how difficult it will be to give my son over to be cut open and for his little body to go through a MAJOR oporation. But I do know that God is the great Physician and He is in control. Death is a very real possibility. Can anyone really prepare themselves for the loss of a child, I dont think so, but Christ is our strength and we trust that His ways are prefect! So please be praying for the surgeons and nurses, that God will guide their hands and lead their hearts. We pray that God will use Malachi in amazing ways, to change people and melt the coldest hearts. We pray for a positive outcome and continued guidence in our decisions. Malachi is a gift to the world, and Josh and I are better people because of Malachi!

We love you all and thank you for all of your support!!