Luke's Journey

Luke Malamis - Born: 11/6/15 5:39 AM

Luke's Heart Surgery Updates

Luke is Home 3/5/16

To our Family & Friends...

We created this page to have a central place for all of our wonderful, loving family members and friends to get updates on Luke's progress. Time has not allowed us to keep everyone updated as often as we would like.

We sincerely appreciate all of your prayers and support so very much.

With sincere hearts of gratitude...

Danny & Jody

The Back Story

Several months ago during an ultrasound... and then shortly after, confirmed by an amniocentesis, we were told that Luke would be a Trisomy 21 baby (Down Syndrome) baby. We had the obvious concerns any parents receiving that news would have. It was a very emotional time for us, but through much prayer, an incredible amount of love... and great family and friends, we have found incredible joy (and, of course, worry) in his arrival.

We are so grateful for Ray Sellers, and his reaction, when I told him about Luke. I told him we were having a baby and he congratulated me. I then told Ray that Luke would have Down Syndrome. His response shocked me in such a good way. He said... 'That's Fantastic'... I thought 'What?'. Ray is the father of a wonderful 25 year old young lady with Down Syndrome. He told me I was a wonderful person, but this would make me such a better person. He also told me we would learn more about, and receive more pure love than we have ever known. Ray later took time to speak with Jody and me and gave us incredible hope. We feel so blessed to have Ray and his wife, Heather, as some of our best friends.

Shortly after Luke was born on the morning of November 6th, he didn't seem to be getting enough oxygen. They did an echocardiogram and found complications with his heart. Then they arranged for the Maryland State Police helicopter to fly him, the day he was born, to Johns Hopkins in Baltimore. He is currently in the neonatal intensive care unit at Johns Hopkins. They are monitoring Luke close and told us he will have to have open heart surgery to repair his heart. We are so grateful for this wonderful hospital and the level of excellence they operate with.

Thank you all for your continued prayers for Luke and our family.

We are honestly at peace and filled with hope, and we have a new understanding of the scripture Philippians 4:7 that says...

"And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus."

I don't understand how we could be at peace at a time like this, but it does say, 'which transcends all understanding'.

Grateful and Hopeful!

Luke is home.... happy, healthy and excited about life.

Grateful for all the prayers.

www.LukesPlace.us

Luke's Progress after Surgery

Mon - 2.29.16 - 4 PM

A quick update on Luke's progress.

Today they moved Luke out of the Pediatric Intensive Care Unit... which is a great sign that he is progressing well.

He is getting back to his joy-filled self. He gave us lots of smiles today... and that brings us more joy than anything we could ever imagine. There are clear signs of him being in pain, as can be expected, but it amazes us at how strong and joyful he is, considering everything he has been through.

We are looking forward to getting him home (hopefully over the next week or so)... but certainly don't want to rush the healing process... as he is in the best place he could possibly be right now.

We are grateful for the incredible outpouring of love and prayers for our beautiful little Luke... and for our family, as this has been one of the toughest things we have ever been through.

Grateful!

~Danny & Jody

Sat - 2.27.16 - 11 AM

This morning, Luke is awake and looking around. He clearly recognizes us... and it's so hard, because he seems to want us to hold him, and we can't yet, due to all the equipment he is still hooked up to. He is doing really well. They still have the pace-maker hooked to his heart to ensure the rhythm doesn't drop below where they want it, but it is not kicking in, because his heart is operating in a normal range on its own. They took the breathing tube out at 5AM.

We are so grateful for everyone who is praying and showing love for Luke's recovery. We are so grateful for the Doctors and staff of Johns Hopkins who dedicate their lives to helping others. We are grateful for the incredible technology that is mind-blowing to see in action.

This is one of the hardest things we've ever been through in life... it's such a helpless feeling... a feeling you can only rely on faith and hope. It's a vulnerable feeling to not be able to do anything to help such a helpless, beautiful little life. All we can do is Love... and trust God for the rest.

With love and gratitude,

Danny & Jody

Fri - 2.26.16 - 1:50 PM

At 1:50 PM, the surgeon just came out to meet with us. He said the surgery went well. There were more problems with the heart than originally expected, including the heart being large and working overtime due to the issues... but they were able to repair everything and the surgeon said he believes everything will be OK. The next 12 hours will be critical. Luke's heart did well coming out of the surgery. He will be kept asleep the rest of the day, and tomorrow, if everything goes well, they will wake him and start to remove some of the tubes.

Fri - 2.26.16 - 10:53 AM

A quick update.

We got to the hospital at 6AM. Luke was so pleasant this morning... as he honestly is every morning.

Jody and I were able to go into the prep room with Luke and then carry him into the operating room and stay until they put him under for the surgery. There was still a lot for them to do prior to actually starting the surgery.

At 9:58 AM, the actual surgery started. It is now 10:53 AM and it's so hard to think about what's going on right now in that operating room. Please keep praying. They told us the surgery would be finished around 2pm. Grateful for your prayers.

Updates from Original Stay in Johns Hopkins

(in descending order)

Sunday, Nov 29, 2015

Please pray for Luke's beautiful little heart.

He is doing so well at home with us. He is so full of joy and peace... and he is bringing our family the same. With how easy and happy he is, It's easy to forget that we have a major operation coming up. We are asking that everyone prays for God to repair his heart without surgery being necessary. God made his heart, so we know he can repair it. We also know that God made the surgeons that will eventually perform the surgery if necessary... and we are grateful for the hands and technology that makes this type of surgery possible... BUT... we are asking for your prayers that he doesn't have to go through such a major surgery.

This is a snapshot out of my journal to show you more about the issues with his heart.

click on picture of journal page to enlarge

https://sites.google.com/site/malamisfamily/luke-malamis/Heart%20Picture.jpg?attredirects=0

Sunday, Nov 29, 2015

Mornings just don't get better than this. I really can't believe how blessed my life is.

No matter what storm you go through in life, even if it's one after another...and seems like the turbulent times will never stop, NEVER, EVER, EVER GIVE UP! There's better times coming. And, the amazing thing is, even when you're in the worst of the storms, cry out to, and trust God, and He will provide a peace that exceeds all understanding right there in the middle of the storm. The peace He provides does not change with the changing circumstances around you. It's there always, if you accept it. I am filled with gratitude and amazement.

Friday, Nov 27, 2015

Luke's first real outing - Christmas Tree Lighting Downtown

Thursday, Nov 26, 2015

Luke's First Thanksgiving - So much for us to be thankful for!

Saturday, Nov 21, 2015

After 15 days.... Heading home!

Saturday, Nov 21, 2015

So Happy to see Luke Happy!

Thursday, Nov 12, 2015

We just met with the Cardiologist. They are going to continue to monitor Luke over the next couple days and then they will start him on medication to prevent excess fluid from his lungs... and to keep his potassium levels at a reasonable level. He will have to go through surgery to repair his heart... providing they are able to get everything stabilized, they want to wait until he is 3 to 5 months old to perform the surgery. We are praying that he will not have to go through this type of surgery. We realize this would require God to perform a miracle... and if He is ever going to perform one in our lives, this is the time I would pick.

Luke is honestly such a sweet baby. He is so calm and loveable. He smiles much more than he cries... and he is such a joy. He is eating really well too.

We are grateful for your prayers and support.

With Love and Gratitude,

Danny & Jody

Wednesday, Nov 11, 2015

Luke got moved into a crib tonight at John's Hopkins instead of the

hospital warmer bed. He is tucked in and ready for a good night's sleep.

Tuesday, Nov 10, 2015

Absolutely gorgeous and tucked in for the night.

We are so blessed.

Monday, Nov 9, 2015

Luke with Mommy - Getting ready to eat.

We are so fortunate that he is eating really well.

Monday, Nov 9, 2015

Luke getting his second echocardiogram at John's Hopkins

Sunday, Nov 8, 2015

Luke tucked in a ready for some sleep

Sunday, Nov 8, 2015

I am absolutely in LOVE!

Saturday, Nov 7, 2015

We had a different plan for the first days of Luke's

life, but at least he has a good view

Saturday, Nov 7, 2015

Mommy with Luke

Saturday, Nov 7, 2015

In Johns Hopkins

Friday, Nov 6, 2015

Arrived at Johns Hopkins

Thank God for this incredible place and the

amazing people working in it.

Friday, Nov 6, 2015

Luke's first flight wasn't how we envisioned it :-(

Friday, Nov 6, 2015

Leaving Cumberland to fly to Johns Hopkins in Baltimore

Friday - Nov 6, 2015

:-(

Friday - Nov 6, 2015

Mia and David with Luke

Friday, Nov 6, 2015

Mommy with Luke

Friday, Nov 6, 2015

Daddy with Luke

Friday, Nov 6, 2015 - 6:30am

Luke Robert Malamis born this morning at 5:39 am. We're so in love!

In two of his first pictures taken, you can see hand signs

he is giving us. The one on the left says he's bringing us peace...

The one on the right says everything is going to be OK.

Thursday, Nov 5, 2015

On Thursday, the day before Luke was born, I took a picture

of this sign in the hospital in Cumberland. I didn't know at the

time the increased meaning of the message in this little sign.