Wednesday, May 23, 2007

Progress & Planning

All three Leino's in Chapel Hill are enjoying a fabulous day. Isaac has made his way up to full feeds & no longer requires TPN (IV nutrition). He still has occasional gag & bile issues, but we're working to figure out the cause of this. The medical team planned to transition Isaac to his home vent on Friday. However, Isaac has done so well that we bumped up his first trial to today! He did so well with it that we've completely switched him over to the home vent now! Its more of an adjustment for us with the equipment than for Isaac. But just like every stage of this journey, we'll learn, adjust, & keep moving forward. Our little fighter continues to amaze & move towards home. Words fail to describe our joy in even having the road home nearly in sight now. Should all continue as planned, its only a few more weeks away.

When we learned last May that we'd be having a child, our minds immediately went to dreams & hopes for our little one. But as circumstances changed with Isaac's condition, that dream would change to fit reality. Those dreams today are far from where they were originally, but they are just as good - simply different. At times, this deviated "pill" feels hard to swallow with all the equipment & seemingly unnatural modes of living. In those moments, we find comfort & strength in remembering that God's purposes are always perfect & for our good. And with a prayer & one glimpse of our sweet boy, anxieties melt away, leaving us once again filled with peace & promise for the days ahead. Our new dreams are filled with hope & amazement with all God has done. We are most blessed!


Anonymous said...

Praise God!!

Much love to you all. We are still praying.

The Tilson's

Sue Brown said...

Praise God for each little step that leads you all closer to home. We will keep praying! Thank you for sharing your son and this part of your lives with the rest of us.

Anonymous said...

Amen! Well said. How could anyone look at that little sweetheart, and not love him completely??? We are in agreement with you that the Lord's ways are perfect, even when they may not have matched our ways. Loving you three in Him.

Anonymous said...

How awesome to hear the news of home in the near future! Isaac is quite the little trooper, proving everyday that God has a purpose for him. I think he has taught so much to so many people. AMAZING!
Always in my prayer,

Carlyn said...

Go Isaac! You are an amazing little boy! Your C3 family can't wait to have you in Clayton!

Jordan & Patience ... God has carried you through the past 12 weeks and He will continue to carry you through each day ahead.

See you Leinos soon!

Hugs & Kisses!

Anonymous said...

What an exciting time for all of you. Praise God for all that he has done and will do for your family. We will continue to keep all of you in our prayers. One more day closer to home. . . YEA!

Anonymous said...

I'm a critical care nurse and it's been incredible for me to watch the journey that Isaac's little body has taken over these past months. If there's one thing that the medical field has taught me, it's that we can never predict what God has in store for people's lives. What a miracle... congratulations to you all!

Anonymous said...

You are right, Isaac is a true miracle and everyone who prayed for this miracle, to see him one day head for home, will have their faith strengthened. Thanks for sharing so transparently, encouraging us when we should be encouraging you, and using the blog to remind us to build up our faith in the One who loves us most. Thank you.

The Eckerts said...

I am so excited to hear about Isaac's steps towards home! God has some amazing things to come for you three! I remember the day we found out we were pregnant and I thought that my life changed completely! Oh, but little did I know that it was REALLY going to change the day he was born. It's amazing the love you can have for another! Praise God for his everlasting love!

Jane-Jane said...

Amazing how even tho' Isaac is the patient, we as adults are learning. God's methods of teaching are never easy, and rarely our idea fun... but so worth the education.

We have all been blessed to be on this road with the three of you.

I am praying for all of you to be home soon!

gracie :) said...

How exciting the word "home" is! I know this is a much longed for event after ICU life, and I'm so happy the plans are beginning to be made. Blessings on all three of you as you learn to make this transition. May God continue to bless you with health, strength, and His peace on your journey!

Gina Witcher / Runnermom4 said...

I almost can't believe the things I read on this blog recently. I can't believe "home" is almost touchable.

My kids (6,4,3) have always had a funny way of praying. Instead of saying, "God please heal Isaac or feed the hungry children," they have always prayed leading with a thanks (we didn't teach them this). So their prayer daily at almost every meal ever since things got bad with Isaac, have been, "God thank you that baby Isaac will be healed and that he will get to go home soon." I began to think they have a connection I don't have? :-)

Our God has amazed us all in this situation, and even though going home may be a little scary, know the prayers of hundreds will go with you and will continue to watch and see what God does next with this child chosen and blessed by God.

I think I am going to go do cartwheels in my living room for Jesus... okay, maybe not... too much furniture.

Anonymous said...

Home Isaac will go and home he will flourish in the love and presence of the Lord with his two Godly parents....Keep believing that ALL of God's promises are "Yes and amen"....He IS faithful....Love you so much!! Cindy

Anonymous said...

Praise God for the wonderful things he does. It's so great to hear that Isaac is doing so well with the feeds and the new vent. I know that home is near.
Many out there may not know this, but Patience has not left the hospital since Isaac was born. She is a true warrior for God and her son. Home is an everyday word for us, but is now a dream coming true for the Leino's.
Lord we pray for continuing strength for Isaac, Patience,& Jordan. Watch over them and help them through another journey that is right around the corner. (Going Home!)
Praying Always,
Pam- Chesapeake, Va.

Anonymous said...

You are all so faithful and such role models for me. Still praying. Holly Brewer

Anonymous said...

Our God is such an awesome God! We thank him each day for the baby steps Isaac takes in his journey towards home. Patience and Jordan, you have been so generous in sharing this journey with us. Your faith has been an inspiration to so many people and God definitely has a plan for this sweet little boy. I can’t wait to see him come home and I’m sure you will have more help than you want at times. God Bless you and keep you as you walk around the next bend in this road towards home.

We Love you,
Jim and Carol

Pete, Alison and Charlie said...

So pleased to hear that Isaac is taking all those steps in the right direction - bringing you ever closer to going home!
I know what you mean about your plans and hopes for your child taking a major redirection once a diagnosis like HLHS has been made, but the new direction can be equally, if not more precious. Believe me, I know!! There is a real silver lining in the cloud of congenital heart disease! I was sent the little story below when Charlie was diagnosed with HLHS and it made such sense to me. You may have already seen it, but if not, I hope you like it as much as I do. It's called 'Life in Holland'.

'I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this . . .

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, Michelangelo’s David, the gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” “Holland?” you say, “What do you mean Holland? I signed up for Italy I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in flight plan. They’ve landed in Holland, and there you must stay.

The most important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine, and disease. It’s just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower paced than Italy, less flashy than Italy. But after you’ve been there for awhile and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland has Rembrandts. But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

The pain of that will never, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.'

Keep taking those baby steps Isaac - there are so many people out here holding you and your parents close to their hearts. Praying for a continued smooth path home.
With love,
Alison xx (Mum to Charlie, HLHS)

Anonymous said...

Praise God for his great love and power! We'll keep praying.

"Worthy is the Lamb..."

In Him,
Bruce, Cindy and David

Anonymous said...

How beautifully worded this post was. You expressed your feelings of anguish, which is certainly understandable, then you reverted to praising God for His many blessings.

As I read this post, I felt as if I were reading Psalms. It sounded very much like the heart wrenching cries of David when he was in distress. We see how our Heavenly Father delivered David from ALL his afflictions, worries, and enemies. I see the same pureness of heart toward God in your cries also. That kind of faith and love in and for our Heavenly Father only melts His heart, just as David did. I know you have so much more to look forward to in the way of blessings and miracles. Thank you for being so inspiring.

Please let us all know if you need anything for Isaac when you are finally able to bring him home. What a glorious day that will be.

Rebecca VanderWerff

Anonymous said...

Words are at a loss right now for the gratitude I feel to our Lord for hearing our prayers. As with all trials, they are so hard to go through, but with through the power of the Spirit, God graciously guides us. In the end, we have become more like the Son, which is God's purpose for the trials he allows us to go through.

Much love to all three of you, and we will continue to pray. Thank you for keeping us updated on Isaac's progress.

Adam and Nat said...

Praise God- I can't wait to see pictures to come of him laying in his crib at home in his cute nursery you have set up for him.

Anonymous said...

Pete and Alison,

Thank you for sharing that beautiful story. What a powerful statement it makes. We do spend a lot of time focusing on the things we "think" we need and want. God knows what's best for us. We just have to learn how to let go and let God.

Rebecca VanderWerff

Anonymous said...

We are blessed and excited to follow this journey with the Leinos, growing in our faith as we witness your trust and reliance on our Lord each step of the way. Isaac has been used even before birth to touch many, many lives for Christ, through the faithful testimony of his parents. We love you,
Nancy (for all the Singletons)

Anonymous said...

I told you by Father's Day....YEAH!!! Love you guys and still expecting God's hand to carry Isaac to Clayton for Father's Day:-)

Anonymous said...

Ahead of schedule!!!
Awesome God!!!

Anonymous said...

Praise the Lord!

I'm so happy to hear that Isaac is doing so well, you guys are still in our prayers.

God Bless You
Dianett & Sam

Anonymous said...

“My soul, wait thou only upon God; for my expectation is from him” Ps. 62:5

I was so encouraged by your honesty about your feelings and disapointments followed immediately by your willingness to change your expectations and dreams to fit the circumstances that God had brought into your lives for His purpose. You are shining beacons to God's faithfulness and to the beauty of lives surrendered to Him.
Brenda Mattson

a.ballard said...

i am so happy for you guys!i told jordan when i spoke to him take this is gonna be a wonderful story to tell Issac when he is big!now look...the story you waiting to tell him just keeps getting better!my heart goes out to you all!what wonderful news, and you all really needed some news like this!it sounds like you really know what your doing too!i would be scared to death about all this change...i know your glad to hear the words home but me on the other hand had a hard time coming home with both of my girls when they were born...i guess its kinda comforting to have all the doctors and people to help and explain things!i would be lost if i were in your place, Issac is lucky to have such strong parents...and i know you will do great!home has been a long time coming for you and that picture of his room looks like its missing somthing but with him home it will fill up fast!good luck!

Patty Honeycutt said...

I am so proud of you and your adaptability. It is wonderful that you can have such joy in the midst of difficulty. You are such a blessing to so many people. You are ministering to people in ways that you may never know. God continue to bless you with good things.

Anonymous said...

God says to dream BIG! Hold on to your dreams for Isaac. God just needed to use him right off the bat to bring us all closer to Him and the miracles He is so capable of... Isaac has been God's little helper, and will continue to be I'm sure.... your dreams, and His dreams for you, will all blend together and Isaac will continue to be blessed and be a blessing to others! Thank you again and again for sharing this journey with us all! Prayers are answered as we pray daily!! Much love to you all! And glory and praises all to God!!

Donna said...

Dear Leino Family,

I have been following the entries of Baby Leino for months. I know this is an exciting time for all that Isaac is doing well and will be going home in the near future. He certainly is a fighter. I hope and prayer for long and happy lifes for all of you! God Bless you all.

Anonymous said...

Praises to God indeed!! Your story of uncondtional faith has been a testimony to us all. Perhaps that has been God's purpose for your family. One day in heaven someone will come up to you and thank you for bringing them to God through Isaac. We so look froward to the day when he joins us at C3 and we all get to meet him face to face.
God bless you all!!
Janie Truelove

Anonymous said...

the lord leaves us speechless in many occasions! how proud we are of isaac and all he has come through. god is great. we can only believe with you that the road ahead will be smooth as you transition to home. we pray that you will be able to celebrate your first father's day with your sweet little boy at home in the comforts of your own home!!! praise the lord for he is faithful!!!

Anonymous said...

Praise and all thanks be to OUR GLORIOUS God for all He's done and is doing.

My heart is so happy for you all.

Anonymous said...

Go Isaac and thank you Lord for great news

Anonymous said...

What more can we say than that we serve an AWESOME GOD!

Rachel said...

I am very happy to see that you may begin to plan for your trip home. You have never been far from my thoughts and prayers here in Charleston. I admire your continued faith throughout this journey. You may never fully realize how many lives your examples have touched. May God continue to enrich your lives with His joy and power!

Anonymous said...

We can all learn a lot from the Italy/Holland story..... it's great to hear you say "home" and to see the continuing miracle transform each day. We look forward to the homecoming at C3.
Sharon & Jimmy Jackson

The Atkinson 6 said...


Home sweet home!

No matter what the circumstance God will never foresake you! He will continue to stand with you and carry you all during the difficult times, but He is also there clapping Jordan on the back and squeezing Patience's hand when Isaac has taken each step towards recovery!

We can just hear Him now, "I am pleased, for you are a good and faithful servant"

We are blessed to have been giving the opportunity to know you and to follow you on your walk of faith. Thank you for sharing all your dreams, difficulties, tears, and triumps.

It's been a long road...but that beautiful nursery is in sight!

We are so absolutely elated for you!

Many Blessings,
David and Erika

Anonymous said...

Praise God!!! nothing more to say except..Thank You Father!!!.

Still praying

samekville said...

He is a miracle boy and God is going to use this for His glory! I'm so, so thrilled for you guys and that you'll soon be at home with your beautiful son. Holland IS beautiful this time of year! What a great story.

Continued prayers for you all!
- Sarah

Anonymous said...

Many blessings to you all! God has shown us once again how great he is and the great things he can do when we put all our faith on him.

May God continue to bless you guys!

Dianett & Sam