Update

Hello everyone! Things couldn't be going any better here! We enjoyed an afternoon full of visitors and now we are watching a little tv and relaxing. Malachi is sleeping after eating 4oz. of formula (which is what he drinks at home). The nurse just came in and said we should be able to go home on Tuesday as long as everything continues to go well! I am excited but nervous at the same time. They are taking the floey (catheter), av line and the chest drain tube out tomorrow. The nurse also said that i could probablly hold him later tonight even though he still has the drain tube in.

Just a quick update... peewee is moving and i want to try and catch his open eyes.

Eating

Malachi had his first bottle since midnight on thursday and boy did he suck it down!! We were told lat night they probablly wouldn't start feeding him untill late night today. Whelp, the doc said he looked GREAT and that he thought they could move the feeding up to 8 am. Woo Hoo! The nurse has to feed him right now, but we are expecting tomorrow or the next day to be able to do it!

We still can't hold him because he has the drain line in still. They want to make sure the excess blood is draining away from his heart and not pooling around it. As soon as they take that out we will get to start holding him!! I can't wait! (the doc was just in and said they might be able to take it out tomorrow!!)

The resident ICU doc was just in and told us that they are weening him off the pain meds that cause sedation and switching him to Tylanol with codine! He should start to be a little more awake now. She said that hes doing great!

We are just relaxing while we wait for visitors. Today we have a big group comming up. Amanda, Will, Aunt Katie, Grandma Lucci, Mark, heidi and uncle Mark! We are so lucky to be surrounded by so many people who love Malachi and us. They only let 4 people in the room at a time right now so if you want to come visit let us know and we can tell you when not a lot of people will be here.

Well our first visitors are here so i need to get going. I will update daily as we get new news. Have a GREAT sat.

-Erin, Josh and Malachi

Dad's minute

Hi everybody,

Normally Erin is the one that updates this blog, but I felt I needed to write about 2 things after yesterday's events.

first;

The Power of Prayer...

I can not express the amount of gratitude and thankfulness Erin and I feel for everyone that has been praying for us. It is hard to say that God does not exist when a surgery on a delicate little heart that should take at least 5-8 hours is finished with no complications in 3. Furthermore that the breathing tube that should remain in for 2-3 days is removed by the time he reaches his room after leaving the OR. Many would say these are remarkable and amazing things, I say it is answer to the petition of prayer that has been said the multitude of family and friends out there. It addition to pee wee's (or hulk) surgery the amount of peace and calm we felt through the anxious waiting time could only have come from God. Which leads me to my second point..

Seeing God in all...

There have been countless times through thhis entire process with Malachi that we have seen God in action. In the last day or so, we have been provided with a place to stay with no fee for parking, as well as an ample amount of "community food" to nourish and energize us. We have had countless emails, phone calls, texts and visitors to support us. God's hand is in it all. Often we neglect to realiize it is our Father that has provided for our needs. One great example of God's comforting of us came yesterday right after Malachi was out of surgery. We had just seen him and we're in the waiting room as the nurses stabilzed him. Erin looked out the window and saw the following picture. Many would say it is a coincindence, but I say it is another sign of God reassuring and comforting us. Here is that picture as well as a few after surgery.

Thanks for all your support,

Josh and Erin

Resting

Im in the room right now and peewee is doing well. They have to wait to give him pain meds till he wakes up a little more. They took the breathing tube out right after surgery which makes me happy! He is resting right now and sucking on his pacie. Josh and I have decided that Malachi needs a new nickname...we have decided Hulk will be replaceing peewee. Sounds good right?

They were a litte concerned because he had a "floopy airway." Its seems to have improved the more he is waking up. The nurse actually had to hold his jaw to keep the airway open for about 20 mins. The nurses advised us that we shouldn't stay the night here. They will be in and out a lot and will need room to move around. We are planning on going back to the RMH for dinner and a good nights sleep. We will be back up here for Doc. rounds tomorrow morning.

The nurse just came in and told us that he needs a little more blood they are getting ready to do another transfusion. Ahhh...I am leaning so much new hospital lingo! I will be an old pro by the time it is all over!

Thanks again for being wonderful friends!! We are blessed to know each one of you!!! Love ya!~

Done

Peewee is all done!!! 3 hours, thats all it took!! We are so excited and thanklful that everything went well!! God is amazing and your prayers really made a difference!! We get to see him in about 15 mins. I will post more later and try to get some pictures up!

Thanks again for all of your prayers and support!

in a flash

Hey guys! We are here and all settled in. We got to the Ronald McDonald house last night around 7pm. Its great!!! We love it there and are so thankful for a place to call home for our long stay! I will post more about the house later.

The surgons just took Malachi back! It was hard seeing him go and I cried like a baby! We should be getting an update around 9:30. I will try to post when we learn more!! Thanks for all the prayers and support! We couldn't do it without you!! We are waiting for some good friends and my brother to get here. The others have spaced out their visits so there will be somone with us each day till monday.

This is the hardest thing I have had to go through, ever! But i know the outcome will be so wonderful! I will just keeping thinking about when this is all over!

Wordless Wednesday

I know this is supposed to be wordless but there is a story behind this picture. Ahh..please forgive me all of you super moms out there. This MASSIVE mound of laundry has been my nightmare for the last 2 weeks. Yes, I washed all of this and NEVER folded it! It found a nice warm place on my laundry room floor and I didn't want to re-locate it from its very comfortable home. I have been feeling a bit overwhelmed the last few weeks and my brain has been going a million directions. The house has been clean, dishes done anf floor washed but behind the laundry room door lies this....

I am happy to say, with the help of my husband this disaster is all folded and put in its propper home...the closet and drawers!! Ahhh...I feel much better getting this off my chest. Now you all know my demise...laundry!!!!

He is the man

This lovely man to the left is Anastasios C. Polimenakos aka the man that will be fixing the heart of Malachi! Please be praying for him over the next 2 days. We are trusting that God will guide his hands as they work on peewees delicate heart!!

That is all for now. Im sure I will post more later. Did I tell you we leave tomorrow? haha I hope today goes quickly!

Quick update

Welll...Malachi is now 11.3lbs!!! When we brought him home 2 months ago he was only 8lbs!! Way to go Peewee. We might have to think of a new nickname soon...hmmm...any ideas?

Peewee sleeping in the pack and play! Since he started rolling over, we can't keep him on his back! Doesn't he look comfey?

Getting close

I've been meaning to post for the last day or two but every time I sit down to type, i get bothered! Speaking of...I will continue this in a few mins. Peewee is in need of something, anything! He is teething...not fun....

Alright, I am back. Peewee is fast asleep after a little snuggle time with the momma. As I was saying before, I keep getting inturrupted!

Things are going well here. We are slowly getting prepared for thurdays/friday. I talked to the nurse at Rush again today. We have to be there at 11 am on thurdays for some pre surgery testing. She tells me that we should expect to be there about 4 hours on thursday. A fter the pre stuff we get to check into the Ronald McDonald house (only if there is a room avaliable for us, we wont know till thrusday). Friday is the big day. We have to be at the hospital at 5:30 surgery starts right at 7:30. He should be done between 12:30 and 3:30 in the afternoon. I will be send update to our blog via twitter so look for them!!

I wanted to share a few dreams I have been having lately with you. Sunday night I dreamed that the nurse tripped over the bi-pass machiene and unplugged it killing Malachi! It was so realistic! I know this is not possible, but im still worrying about it. (my wonderful sister-in-law who is a nurse informed me that they have battery back-ups) Last night I dreamed that there was a shooter on the loose in the hospital. I woke up before it could get to bad. Can you tell im worried? When I finally wake up, I have a hard time going back to sleep. My heart races and I get the cold sweats! I hope tonight I can dream about good things and actually get a good nights rest!

I have to get going, the home healthcare nurse is comming over to give Malachi his synnergis shot and my house is a mess!!

4 days

Its a very cold sunday night here in Chicago. Josh is busy washing dishes (Im lucky, I married a man who cooks AND cleans up afterward) and Malachi is sleeping. There are a MILLION things I should be doing, but just can't find the motivation to do them. Everything I should be doing seems so trivial when I think about what PeeWee is about to go through. Most of my thoughts the last few days have been drowned in the "what ifs" of heart surgery. I want everything to go perfectly but I also know that this is not in my hands. I don't want to have to see PeeWee hooked up to every machiene in the room. I don't want to see drainage tubes comming out of a hole in his chest. I don't want to see my son in a hospital crib. I just don't want to do any of it. I am looking forawrd to the day when I get to blog about his surgery and how it seems so long ago!

Over the past few months we have been blessed to meet so many people who have children who have been through this very surgery. They have been a source of great motivation and encouragment.One of those wonderful people just wrote a blog entry about Malachi! You can read it here...http://whatevertous.blogspot.com/. We are thankful to all of you have been praying, sending good thoughts and hoping for the best. We are sooooo amazed at the people God has put in our path we can't wait to pass on that encourgment to a new family who will be going through the same thing!!

Here is a picture of Peewee. He is rolling over like crazy and holding his head up great!! We keep getting told that he will have more energy after his surgery...Josh and I are worried! haha, time will tell, but we already have an active little man.

1 week

In 7 days Malachi will be in surgery to fix his heart! We will be waiting to hear from the surgon and trying to find things to keep us busy. Please continue to pray for us as we await the big day!!

New Tricks

PeeWee is finally rolling over on purpose! He has done has done it about 25 times already today. Josh went into his room to feed him last night and he was on his stomach! Rolling over was one of our goals for PT. However, his PT hasnt started yet! Malachi is a fighter and will prove society wrong!! I just know it! Way to go, we are sooooo proud of you!

Pictures

Walking on stage

Our Pastor showing off Malachi

Dedication

Prayers for Malachis heart surgery

Malachi is so loved

Surrounded by family and friends

Praying for Peewee right after the service


My best friend from childhood feeding peewee his lunch! He loves his aunt Steph!

Peewee's Grandma Lucci, Uncle Mark and Aunt Beezie

My good friend Jamie and My little brother

The cake, well 1/2 of it

Dedication

This weekend we dedicated Malachi to the Lord! It was a great time of honoring God and committing to raising Malachi to the standards of the Bible. Josh and I are truly blessed to be surrounded by great family and friends who were all there to support us! After the service our Pastor asked anyone who knew us to come to the front of the church to pray for Malachi's upcoming surgery! It was amazing. Here are some pictures that capture the love for Malachi and the group of people (just at our church) who have been praying for our little miracle!

Pictures are not working at the momment....I will post them later.

Twitter

I am excited to announce...Twitter updates can now be found on the left hand of your screen. I decided that this would be a GREAT way to do quick updates during our long stay at the hospital comming up at the end of the month. We are planning on doing a post a night, but twitter will keep ya updated thoughout the day! Wish me luck!

Are you serious?

well folks today it is -35 degrees out! Thats with the windchill. Whats the temp. going to be tonight, you ask? -21 WITHOUT THE WINDCHILL and -35 to -50 with the windchill. Please tell me again why I live in the midwest? Every school district in northern Illinois is closed today, and most likely tomorrow. This means my hubby is home! (I have a honey do list already made up for him tomorrow! I hope he doesn't read this) I think Im going to start looking into a vacation somewhere warm! I can't take all the snow and cold. Please send me somewhere I can defrost! I HATE the winter!

Evaluation

Peewee had his therapy evaluation today. He was in a GREAT mood, which made things a lot better. He ate wonderfully for the ST and cooperated the movement with the OT. They were surprised at how much he is doing given the circumstances of his first 4 months of life. Because he was 2 months preemie they evaluated him on 4 months vs. 6 months. He was evaluated at about 3 months. Only one month behind?? I was shocked that after all this little guy has been through he is really not that far behind!! Praise God for giving peewee the strength and strong will that he has!! We are soooo excited to get things started but we will have to wait until after his surgery! I know that he will thrive once it all gets started!!! Woo Hoo, great job peewee!!!

We are preparing for a HUGE party this weekend. We invited family/friends over to celebrate Malachi before his heart surgery. We are expecting 50-60 people! I dont know where im going to put everyone! We can't wait to pass out our "praying for Malachi" bracelets. Hopefully they will be a reminder to pray for him while he is in surgery and recovering from it!!

We are blessed and every day we find more and more things to be grateful for!!

Hearing test

I thought I would update you all on Malachi's hearing test this past friday. They decided that there is fluid in both ears. No wonder he failed all of his hearing tests, it probablly sounds like he under water! The ENT wants to put tubes in. We are waiting to hear if they give him medical clearence before his heart surgery or if we will have to wait until after.

Things are going great! We went to our first Down syndrome support group this morning. It was great to meet other mom (and dads) who can relate. When people asked how old Malachi was their first response wasn't "wow he so tiny!" Cause they know, children with DS tend to be smaller! I think we will make life long friends here. I can't wait till the next meeting!

We hope you all have a GREAT weekend!

Today was a much better day! Im feeling "okay" with the new surgery date. I am worried about trying to keep Malachi healthy for an extra ten days, especially in the middle of January when the flu and cold are running rampent! I will do my best, and trust that God will keep him healthy. I talked to the surgons secritary today and finalized the plan. We will go to Chicago on the 29th at 11 am. They will get him all tested and ready to go for the next morning. They suspect we will be out of there in about 3 hours that day. After the tests we wil head to the Ronald McDonal house to check in and get "moved in." The morning of the 30th we have to be there between 5:30 and 6 am. There you have it. That is the plan, now lets all pray it doesn't change!!

We have a CRAZY week next week! Monday it is back to the peds office for a quick check up on Malachis sinus infection. Tuesday we have all of our therpy evaluations and an appoinment at WIC (we get it for his formula because he is still a ward of the state and I am not about to turn down free formula!) Wed. we will be in chicago all day. We have court in the morning and another cardio appt. in the afternoon. Yikes thats 5 appointments in 3 days!

Well I know there are some of you reading this blog out there and we would love to know who you are!! Please leave us a message and tell us your favorite thing about winter! We would love to get to know you better!

Surgery pushed back

Well...where to start! I just got a phone call from the office manager of Malachi's heart surgon. They were calling to see if we had gottne consent for Malachi's upcomming heart surgery. After talking for a few mins. she said something about the surgery being schedualed for the 30th. I said that we had been told it was on the 20th. After telling me that the surgons would be out of town from the 19-23 she asked who told me the date of the surgery. I told her the name and she said she was standing right there and put me on hold. Kristen (the lady who told us the 20th) came back on the phone and said sorry that they changed it. Well thanks for calling and telling us!! I am beyond angery/disappointed. Josh and I were ready for the 20th. We got put on the list for RDH and Josh was just about to put in his request off form. And now we have to wait another 10 days. Sigh. I just want to be done and over with this. It is mentally and physically draining! On told of all of this the doc. was concerned that Malachi lost weight, which in turn made me worried! We know that he will be so much healthier after this surgery is done with and that makes it that much harder to understand why they pushed it back! Im going to go sulk in my own greif! Tomorrow I will be better, I promise!

Boogies

Well...the cough and boggies have been caused by a sinus infection! Poor little guy! We got some antibiotics and he should be feeling better soon! The shots didn't go well, he cried for 30 mins after they were over! Dramatics! He is sleeping now and I know he will be VERY unhappy when he wakes up! Im going to get going so i can enjoy my peace! Happy 6 month birthday baby boy! We love you!

6 Months

Malachi will be 6 months old tomorrow! We are celebrating with his 6 months shots at the doc. Yuck. When he got his 4 month shots he was a BEAST afterward. Tomorrow I will be brining the Tylenol and will be ready to give it to him. We will also give him his favorite dinner...sweet potatoes! Exciting day, I know.

The BIG day is getting closer and closer. We are busy getting things in line. Josh is working on sub plans for 7 to 10 days, I've been busy talking to the PICU social worker trying to line up our stay at the Ronald McDonald House and we have both been going over finances for our week in Chicago. Not to mention we are getting Malachi dedicated the sunday before we leave and hosting a big lunch at our house afterwards! And while we have all of this going on, I still have to take him to 6 doc appoints in 2 weeks! Soon this will all be over and we will be wondering what to do with all our free time!

Good news, his cough is getting a lot better!! I have only heard him cough twice today! Praise God. Josh is currently sucking boogies out! It seems like the never ending processes. He is a boogie making machiene!

I will be posting more and more as we get closer to the big date! Keep praying for Malachi!!!

Surgery and other stuff

Jan. 20th is the BIG day! The day that we have been looking forward to and dreading at the same time. The day we hand over Malachi to the skilled surgeons to fix his broken heart! Josh and I have been busy preparing ourselves mentally for the overload of emotions we will experience at the end of the month. We are focusing on the positive outcomes that this surgery will provide for Malachi. He will have a working heart, many of his other health complication will lessen, he will have more energy and he will (hopfully) stop taking majority of his medications which are currently keeping him alive! We can't wait for this to be done witth. We are thankful that Malachi will remember none of it! We will be keeping you all updated on his progress through the surgery and through out his recovery! Malachi is our hero!
Aside from all the medical issues Malachi is doing great! He is growing (now 10.13 oz) and making progress in eating, as well! He is getting more and more active and learning how to get his arms and legs under him! We are getting excited to start PT and OT. Hopfully we will get started before the 20th, but we heard there is a waiting list out here. Our lawyer is going to write the company and see if she can get our name pushed farther up on that list.
Some good news, Malachi had his VCUG donw today and we found out that everything looks normal! There is no Urinary Reflux! Josh and I are very excited to cross yet another possible complication off the list!
No other exciting news. He has a little cold Josh and I are trying everything so it doesnt turn into anything!! Please pray God keeps him healthy!
Thank you for all your support! There are a few things we would ask you to pray for.
*The docs and nurses that will be doing the surgery. Give them knowledge, steady hands and gentle touch.
*For Josh and I as we prepare for 7-10 days of recovery. This will be a very difficult time for us!
*For finances. We will be eating 3 meals a day out! Thats 21-30 meals we will ahve to buy. This expence is not in our budget but we are confident God will provide one way or another.
*Thank God for keeping Malachi healthy, for sustaining him and being the Great physician!

We are thankful for each of you!! Love you!

The new year...

Happy New Year! We have been so busy around here I haven't even had a chance to blog about Christmas. Please know that we are all doing GREAT! We are in the process of switching all of Malachi's Docs and getting him started in PT, ST,OT and so on. Malachi surgery will still be on the 20th and we are busy trying to keep him healthy. He has a cold right now with a bad cough. We are praying that we can get him through this with no hospitalization. If he gets admitted we will have to wait another 4 weeks for the surgery! Please pray that he gets better soon! And if any one has any home remedies to get rid of a cough let me know!

Have a great first week of 2009! I hope to find time to blog more after Josh goes back to work and things settle down here!