When asked to describe the past seven days, the word "phenominal" comes to mind. For so long, it seemed sickness & set backs were on a snowballing path. Now, health is gaining with every day. As we watch our sweet child, sheer amazement floods our minds at all God has brought him through & how well he is doing now; amazement that his is simply alive, let alone thriving! Were it not for the many scars on his tiny body, one would never know the dark road he has travelled. To the eye, he looks like the most adorable 14-ish week old ever! (And for those interested, Isaac now weighs 12 lbs & is 20.5 inches long!)
On Memorial Day, Isaac took his first trip outside! We loaded the stroller with his home vent, charged the IV pump batteries, & with the nurse & respiratory therapist by our side, headed out to the butterfly garden at UNC. Isaac was absolutely wide-eyed on the journey to the garden. And as soon as the sunlight hit his sweet face, he fell fast asleep. The 45-minutes outdoors was truly refreshing for us all.
Isaac continues to hold steady on his home vent & has weaned on the rate from 20 to 14. We've received most of our home equipment & interviewed with our home nursing care company. The bile reflux issues has resolved with a few changes to his medical regimend. He's learned to suck on his pacifier, which is truly amazing in light of never having fed by mouth & having an ET tube down his throat for 10 weeks. What a joy to watch our sweet boy acting like a precious healthy baby instead of an incredibly sick child. And to top off the good news, Isaac is now free of IV lines!!!! The IJ line was pulled yesterday, so the only pump our boy is connected to is his feeding pump!!! For the first time in his life, Isaac has no lines in his veins, nothing stitched to his skin. Words fail to express our amazement & gratitude to where God has brought our son from & the place He has brought him to. Wow! We can now pick up & hold our sweet boy without worrying whether we'll throw a clot or compromise his access. Lord, You are faithful; Your lovingkindness endures forever!
Jordan & I have been training with trach & G-tube care. Our trach nurse, Cindy Reilly, has been nothing short of incredible, walking us through the adjustment process. What a wonderful resource she has been to us, coordinating everything needed for Isaac in the hospital as well as the process towards going home. And speaking of home...we have a tenative home date!!! June 19th! Cindy's working with our home nursing care company, Maxim, to hopefully bump up the discharge date...possibly as soon as the end of next week. It all depends on staffing for Isaac's case. He'll require 24 hour nursing care the first week he's home & then 20 hour care after that. So join us in praying for full staffing for Isaac's case!!
How faithful is our awesome God!!!!!!!!!!!!!!!!
65 comments:
I'm so happy for you guys! What an answer to prayer. The look of pure joy and excitment on your faces made my day. May the transition to home go as smoothly as possible and may you be blessed with caring nurses that blend nicely with your family.
What a praise report!!!!!!!!!!! Wow! Thank you Lord!
I have been following you guys Isaac and praying for his health. I am so excited to hear you will be bringing him home soon. How amazing is our God. Continued prayers and blessings
Jordan & Patience,
I want to be the first to say how excited I was to read how well Issac is doing! I know it's got to be wonderful to hold him free of ivs and tubes. It was great to see you all outside and enjoying the beautiful weather. I will be praying that the transition to home continues to go well and that it will happen soon!
Much love to Issac!
Praise God!!! I am so happy for you.
praise God for everything He has done for little Isaac! He will always be in my prayers and I can't wait to see you guys home!
Love,
Christal
Absolutely amazing and a true miracle for sure. The pictures are great.... the parents are beaming. Look forward to soon hearing "we're home" and soon seeing all 3 of you each Sunday.
Jimmy and Sharon Jackson
I am so thrilled to hear the great news!! God is truely amazing and he is love is so strong! I will be praying for you guys and Isaac's continued progress.
Pam
I'm so glad to hear this. I'm so glad to see the pictures too. Praise God!!
God is truly an awesome God! God will bless your family with an early home date ... and you will be able to sit in Isaac's nursery in the rocking chair and cuddle that little boy with love! I personally give you permission to hold him all day for the first few days! (But after that, you have to let me have a turn!)
Praying you home!
Carlyn
praise Jesus!! that's so exciting!! what an answer to prayer!!
Oh My Gosh!!! I am sitting here with tears of joy running down my face! I am so incredibly thankful that things have turned such a great corner and your sweet little man is showing you just how strong and amazing he is! As a mother of a heart baby who was in the Duke PICU for 12 weeks and on the vent for 7 of those weeks, I can totally relate to how you are feeling right now. It is so amazing to finally hear the word home in your vocabulary!!! I am so incredibly happy and overjoyed for you all!!!! God is amazing!!! What amazing and strong parents little Isaac has!!!! God bless you all!
Melissa
ALWAYS FAITHFUL!!!! This is a wonderful update and worth the wait. The pictures are great. How wonderful for Isaac to experience the great outdoors in such beautiful weather. We are praying you home June 19th - hopefully sooner. We know that God has brought you to this point and He will bless you with amazing nurses to assist you with Isaac's home care. Just as He has blessed you with an amazing medical team @ UNC. We can't wait to see you all @ C3 - Isaac will probably need his own personal team of body guards, he is more popular than a rock star......oh yea, he is a rock star. LOL. Continued prayers and much love.
Steven & Kristina
Praise God for this wonderful news! This made my day. A whole new world is opening up to sweet Isaac - our Father's beautiful world. Thank you God for your faithfulness and thank you for this trusting and faithful family.
What a blessing to see the pictures of your family outside. I know that every day is precious to you and I am so excited you have a discharge date planned. Congratulations on receiving the many blessings that the Lord has given you.
how awesome is our Lord, most high. we are so thrilled for you guys, our family!!!! this is truly the best news & we're so thankful you're sharing this w/all of us. THANK YOU!!
marc says "miss you, patience! thank you for your strength. it's so encouraging to me."
mucho amor!!
Wow, I am in awe of the amazing things that God has done and continues to do in Isaac's life. The pics of him in the stroller literally took my breath away. I am so happy for you all. Thanks be to God! Praying that you all will be home with all the care people needed for Father's Day!!
Much love!!
Holland is so beautiful this time of year!
Why do I always have to get out the box of kleenexes to read this blog. Once again ...speechless. God never ceases to amaze me. You know I really believed that God was going to do a miracle, so now why do I stand in such disbelief in the fact that Isaac will actually get to see that beautiful little room of his with his name above his bed. That he actually got to go outside for the first time. That he actually left his room for a pleasure outing and not an emergency MRI or x-ray.
I am so happy for you guys tears can only express my joy. Tears also express how humbled I am that God answered our(the many hundreds possibly thousands)prayers. I can only think how in the old testament when God's people as a whole would finally cry out to him, he was always there to help them or deliver them. Why don't we consider these things and pray like this in all circumstances?
WOW! YOU GO BOY! YOU LOOK GREAT! CAN'T WAIT TO HEAR THE NEWS THAT YOU ARE GOING HOME!
All I can say is Praise God.I like many others have travled the sometimes dark path with you guys holding my breath trying with all my heart to stay faithful and at times feeling so ashamed of my fear and doubt.Thank god ,No really THANK GOD.The faith of a mustard seed is all that is needed.I know the Lord knew what was in my heart and going on blind faith is as faithful as we can be sometimes.
All I can say is Wow God!! He is so amazing. I am so happy for your family I am in tears. May God continue to be glorified in the life of your precious Isaac and the strength of your faith!
All I can say is PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!
ahhhhhh!!!!! what an incredibly uplifting way to end my evening... God is so good.
such wonderful news! Praise God for his many miracles which have kept Isaac and all of us going.
Laura
What wonderful news! Just what we've all been hanging in to hear! Love those pics - it's amazing to see Isaac outside, free from lines and drips, being able to enjoy life - and to see you out there with him. How great it is to have a 'going home' date being discussed now. Over the course of this rollercoaster ride, there have been times when the idea of getting home was so distant it could barely be dreamed about, but now that longed for time is well within touching distance! I hope Isaac's nursing care is sorted very quickly, so you can all get home sooner rather than later (and what a joyful day that will be - not just for you but for all of us who have been following Isaac's journey!). Roll on June 19 (or sooner!). Keeping you all in our prayers.
With love, Alison, Pete and Charlie xxxx
praise god for all those answered prays. when i opened this site, the tears started to flow. as i do not know you folks, but i followed your blog for awhile now. in my heart i feel like i really do know you all. i am so happy for you all to be going home. from diane here in canada.
Patience and Jordan,
I am so happy for you! I'm truly amazed by God's power. I pray the staffing situation gets done quickly so that you can take your precious boy home sooner. I pray that taking him home is a smooth process with no complications. Thank you for posting those wonderful new pictures of you, Jordan and Isaac.
We serve an amazing God!
Love in Christ,
Taneha
what incredible news! we are praising the lord right along with you. beautiful pictures of your family. can't wait to see him home in his cute room.
Oh How wonderful, I cant even begin to imagine how you all are feeling, please know we are praying everyday for you all and THANK THE GOOD LORD for all he has done..
Patience and Jordan,
This has definitely been a long journey for all three of you. I join in excitement of being able to FINALLY bring Isaac home. You can tell by the way he looks at the both of you that he knows how much you two love him. There is nothing more precious than that.
What a wonderful time this is. I am so very happy for you all. I wil continue to lift you up in prayer. Your miracles have only just begun. I know there are many more in sight for you all. You are so BLESSED!!!
Rebecca VanderWerff
PRAISE GOD!!!!!!! THIS IS AN AMAZING STORY OF FAITHFULNESS AND LOVE!!!!
awww I am sooo Happy for you guys.
Hope you have a good week!
Gloria
How awesome is our God! We are so excited for you guys, that you will soon get to be a family in your own home. Praise God! Know that we (including our small group) are still praying for you guys.
AMAZING!!!! How great is our God!!!
Love you all!
I love these pictures and am so excited for you guys! Praise God!
Pai and Jordan,
What a great report!!!! We rejoyce with you and for you!!!! God is great and mighty. It is so neat to see how HE continues to heal little Isaaic's body. We love you and will continue to pray for you.
C&V
Praise the Lord!
This is truly a blessing! I can't tell you guys how happy I am to hear such wonderful news. Looking at these pictures brought tears of joy to my eyes.
May the Lord Almighty continue to bless you all.
Thanks a bunch for sharing this with us.
God Bless You,
Dianett
Wow Wow Wow those are the only words that come to mind!!!
I am so happy for you!
It is well with my soul for sure.
This is so God! He is awesome and amazing! Happy Fathers day and delayed Mothers day present.
GOD IS AWESOME!!!!
Thank-you Lord! You are AWESOME!!!!
Brandy Crocker & Family
Roger said...
My son attends C3 and when we're in NC, we attend. I heard about Isaac just after you gave birth. I mentioned it to my daughter who has been reading your blogs regularly and posting updates on our church's prayer forum (TRB_Prayer Digest). I'm sure you have many people praying for Isaac. I just want you to know that we here in Columbia, SC have been and will continue to pray. A friend once said "there is no poverty so great has having no one to pray for you". That being true, you folks are very wealthy.
God hears to prayers of His children - and He answers!!!
God bless you,
Roger
Chill bumps were running all along me as I read such wonderful God given joy & happiness. I just don't know what to express in words - my heart is feelin so "blown up" with the journey of you 3 and the love and grace God has poured out to you all. Here for the past few days I've been thinking of how awesome it is how God loves us All unconditionally and can be everywhere - in "Holland" and "Italy". And to read this today -- it just again reminds me of His power, His Time, His Plan and everything else about Him that is all wrapped with His great love. Bless y'all and cannot wait to see you all at C3 just glowing in His love and graceful healing. Those pics were wonderful of baby Isaac and so glad he got to see what else God has made outside the hospital walls.
What a beautiful sight to see that baby outside! God's sunshine is so good for him.
Don't you dare feel bad for not blogging, even when your internet access is fine. Yes, we love hearing how your little man is doing, but you have a lot going on, and we can pray with or without news. Enjoy your son, and keep us updated every now and then. But please, don't let us become another burden!
Love,
Kathy
Wow, that's sooo wonderful! Tears come to my eyes as I've been tracking your precious son. Elisa sent me your link awhile back and I was drawn to help pray for such a sweet little boy!
Headlines should read: "AWESOME GOD COMES THROUGH AGAIN-MANY PRAYERS ANSWERED!" Like so many other commentors have said-this posting has been a gift-and we are praying Father's Day will be the awesome day for you to have Isaac home in his own bed!!!! We love you all! Continue to enjoy your baby as parents should-with lots of hugs and kisses!
Yaw family
What a little trooper! Your post brings tears to my eyes! Praying you will have a smooth road to home!
What a praise report!What an awsom god we have.
Wow! Wow! and Wow!
I cannot even begin to put into words what I am feeling right now having read the blog this morning. JOY floods my soul!!!!!
Our God is faithful to HIS Word and He has turned your weeping into JOY!
I am speechless and that is VERY rare.
I will continue to pray everyday for Isaac and you getting him home.
Love always,
BB
i am so happy for all of you!
God is so good and you guys have been so blessed!the pictures made me want to cry...somtimes i feel like i take advantage of my kids going outside or playig with eachother or all the other stuff they do daily.this makes you thankful for all you have and i know you all really deserve to take Issac home and enjoy him!don't let anything stop you, keep going strong because you have come so far!
OMG. that is awesome. we will be praying for him. love you guys.
delea.
Praise be to God!!! You all have amazed me on this journey! COngratulations!
Stefani
I really love to see the pictures of you two holding Isaac. So precious.
All I can say is Praise God. When I think of where Isaac started and where is now(outside no less)it is nothing short of miraculous. My prayer now is that Isaac will be able to go home before or on June 19th. Praise God:) Nikki
God is so faithful- I am amazed and in awe. I KNOW the Lord has might plans in store...He MUST!
I love you guys- see you soon- we are neighbors now! :o)
Love ya!
Angela
Our God is just breath taking...
Isaac is big and beautiful and mom and dad look so proud (with every reason to be :)
Thank you, Jesus for, once again, never changing and loving us unconditionally.
Yay!!!!! I am so excited for you! Isaac looks so good! Praise God.
Caleb just wanted to say hi to his friend 'Baby Issac'
He is 5 now and asks about him everyday...God Bless!
The Pattersons
PRAISE GOD! I'm sooooo happy for you guys. You all look great! I hope and pray you have many more of these wonderful days.
God Bless,
Fernanda Veloso
PRAISE GOD FROM WHOM ALL BLESSINGS FLOW!!! I know you guys can not wait to get your little guy home! Yes, God has been so faithful and has demonstrated His goodness to yall thousands of times over the past many weeks. I pray for 'times of refreshing to come from the hand of the Lord' for you three.
Love in Christ,
Rhonda Garrett (Julie Miles' mom)
Praise be to God for this miracle you all are going through. We are so excited for you guys! I can't wait to meet him :)
Leino family, we are so happy to hear how well Isaac is doing. We understand the joy and excitement of going home after such a long stay. We would love for our heart babies to get together sometime soon and have a little visit. You all are in our prayers and we are so thankful that for the Almighty God that has brought Noah and Isaac through all their difficult times. Keep in touch with us. Our email is jwill31@yahoo.com and Noah's site is www.caringbridge.org/visit/noahwilloughby. Take care and may God continue to bless you all! The Willoughby family
I'm so glad Isaac is improving!! I'll keep praying for your family!! :)
Jordan and Patience, I have been out of town for 2 weeks and had not checked on your family and what a blessing to log back in today and see what all the Lord has done. My first thought of you all coming home was tears and joy and then I thought how blessed will be the health care folks as they observe your steadfast faith and the reality of Jesus in your lives.I will be prayng for a quick and very smooth transistion for you all back home and continued improvement for preciou little Isaac.They say a picture is worth a thousand words and when the site came up and I saw the 3 of you OUTSIDE and the look on your faces, I knew things were going well. To God be the glory, great things He has done. Dixie Harris
This is such wonderful news for you all. GOD is truly amazing and we will all continue to pray for continued good health and to hear that you ALL are coming home soon.
Love,
Angela Clinard
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