Isaac has made tiny baby steps forward this week. With each wean of his sedation meds, he shows his sweet personality more with curious blue eyes darting around the room as if taking in the world for the first time again. We've held him for several hours each day since his trach change & love every moment that he's in our arms. (thus the lack in blogs recently) Our sweet little red head continues to amaze us! And while remain deeply grateful for the excellent care he continues to receive at UNC's PICU, we grow ever more eager to be gone from Chapel Hill & back home again.
Throughout last weekend, he had continued trouble keeping his feeds down & we determined that the pyloric valve between the stomach & small intestines had narrowed, making it difficult for feeds to pass through. So Isaac traveled back to VIR to change his G-tube to a GJ-tube. Now, he has access into both his stomach & his jejunum. He's slowly working up towards goal with feeds going directly into his intestines. He'll be on a feeding pump continuously for at least a few months until surgery can go in & fix the narrowed valve. Our home vent has also arrived, so we'll begin training on how to operate the machinery that will be going home with us. In the next couple of weeks, we'll also be meeting some of our in-home nurses (required for all children with a trach).
So Isaac's goals at this point are to successfully transition to the home vent, establish goal feeds, & transition off all intravenous meds. Hopefully, we'll only be here for another month & then home for a bit before his next heart surgery (between 4-8 months old). What a blessing to have UNC only an hour away rather than out of state! It's truly amazing - Isaac turns 12 weeks old tomorrow!!! Where has the time gone...
29 comments:
A beautiful family with a beautiful testimony ~ not an easy testimony, but beautiful none-the-less. We love you, and continue to pray that God's will be done in His timing. And that the three of you can have much joy in your lives. You deserve it.
Patty
PRAISE GOD!! Isaac has truely proven what amazing things God can do, even in someone so small. I pray that he, and you, will be home soon. Nikki
PS You guys have one cute little family, God Bless.
I love the new pics. Jordan and Patience, you and your little baby boy are continually in our thoughts and prayers.
That picture of Isaac and Patience looking into each other's eyes, literally took our breath away.
We are so happy for you all! He is bringing your sweet redhead home with you very soon!
With continued prayers,
David and Erika
I continue to pray for you and your sweet baby. I am continually in aww of God's healing power and your continued strength through this difficult time. May God continue to heal your son and provide you with peace and comfort. God bless
Beautiful pictures. It's good to see some news. I'm still praying that Isaac will be closer to home.
It's great that no news is good news now!!! Enjoy every moment with Isaac. We'll catch up with you when you have time :-)
Joining you in prayer for continued healing through God's loving mercy.
Karen and the Buckeye clan :-)
I love seeing him in your arms. I'm so overjoyed at the progress strong little Isaac continues to make! Praise the Lord for His good and perfect will for Isaac's life!
Thanks for the updates. Just in time for church tomorrow. Our church has been fervently praying for you and your family. We're blessed to hear such great progress, and that the thought of going home is no longer just a passing thought. You must be so excited!! We'll continue to keep all of you in our thoughts and prayers. God bless!
What an amazing God we have! It's so good to hear how well things are going and that preparations are underway to go home! The home ventilator is super easy to use. It's a pain to haul around but very user friendly.
Great news! We've been checking in regularly to see how things are going, and are so pleased to see such a positive update. Isaac looks great, and he's looking so interested and aware in what's going on around him. I love the picture of him holding his rattle... proper baby stuff at last! Praying fervently for you all every day, and trusting that you and your precious boy will be back home very soon. Keep taking those baby steps, little man - they'll get you home in the end!
With love and support,
Alison, Pete and Charlie (HLHS)
http://charlieturner.blogspot.com
I love to see Isaac with a toy in his hand. What a precious baby. I know you are ready to take him home to share with the church the miracle of our God. 3 months. Has it been 3 months already? Time flies. I can't wait to hear Patience sing!
Praise the Lord! I love the pictures, and cannot tell you how thrilled I am that you are getting to hold him and watch him explore his world without the meds to sedate him. Love you guys! Praying for you as always!
Lindsay
Why am I always crying when I read this blog? :-)
I am so overwhelmed at where you guys are at. I have been praying with so much faith that Isaac would go home, but to read the words on the blog that there is an end in sight just makes me fall on my face before such an awesome, gentle, kind, merciful, powerful Savior.
This whole experience has made me see God so differently, and see how He wants to work in every persons life. He wants us to know Him in such a deep passionate way.
Though I know this road is far from over we will be praying with you every step of the way. I can hardly wait to meet Isaac someday. I am sure I will cry the whole time.
I Love the picture of Patience and Isaac looking into each other eyes. We love you guys. Stay strong and hold on to GODS promises. We are praying for your beautiful family :)
This is amazing news and it is so awesome to see you guys get to hold this little guy. i am sure he is loving it!
Enjoy your much needed time with him and I am praying for your transition home.
Elisa
We were holding onto "no news is good news". Reading your update and seeing the amazing pictures brought me to tears (as this blog often does :o)). We are so grateful to our faithful God that Isaac is doing so well. His continued healing power is awe inspiring. We will continue to pray for all of Isaac's needs and that he will be home w/ you soon. We are also always in prayer for the incredible medical staff that has been treating & caring for Isaac and the 2 of you. It is so amazing how God brought all of us together through one special little boy. We know that lives are being changed not only all over the world but right there @ UNC. Glory be to God!!!
God Bless,
Steven & Kristina
This is great news! Thank you Lord!
This good news was worth the wait!I am so glad the baby is doing good. I have checked the blog about ten thousand times in the last week wondering what was going on!I guess you can't blame anybody for being so on edge for some new news!I think this is so great and God has showed the belivers and nonbelivers that he is AWSOME and I think that the LORD knows how strong you all are.What a wonderful family!Issac is a very lucky boy not only to have made it this far but to have you two as parents!God is great!I will keep praying for you all and I hope Issac can go home with you soon!What good news to end a long week with and even better news to start a new week with!
Tiny baby steps will lead to GREAT BIG GIANT STEPS. We continue to pray for all three of you and look forward to new information on the blog.
May our great God continue to bless you,
Nancy & Shellman Green
All the glory be to God, almighty! Thank You God for the "baby steps" with Isaac's recovery" and for so many answered prayers. We thank You in advance God for the continued restoration of health snd strength to this sweet, little angel and anxiously await our formal introductions.
Patience & Jordon - I pray for all three of you daily and throughout each day and hold all three of you very close to my heart. My, how Isaac has grown, & quite the looker, might I ad! :) You two are such gifts not only to me but so many who have come to know and love you guys through this miraculous journey called life. Thank you for beng such brave and awesome people who have chosen to share some of the most intimate details with so many - to allow people to see Christ through your son and your lives.
May the peace of the Lord be with each of you, continued strength and rejuvenation, too. We love you guys! :)
Praise God!!! What an AWESOME GOD we have!!! I was so thrilled to hear the great news of Isaac. Like everyone who follows this blog, I too was praying that everything was going okay. We all know now that you just had to have the time with Isaac. We will always be here when you get a chance to update. Isaac comes before all of us.
The pictures are wonderful. The love that you share is so amazing to see. The love you have for our God is amazing and inspiring. Keep taking those baby steps towards home.
Always praying,
Pam, Chesapeake, Virginia
Such a beautiful picture and testimony of how Isaac is progressing. I am so very happy for the two of you - being able to hold him and provide the love and comfort he needs. That in itself will help him heal faster. He knows how much he is loved.
Of course prayers will continue for him. I rejoice in all your victories, and those to come.
Rebecca VanderWerff
What a blessing to hear some good news:) I am so happy that you three will be able to go home as a family soon! What amazing pictures of sweet little Isaaic. We love you guys and are praying for you every day.
C&V
Its been an awesome week.. Not hearing from you all was just another blessing from God knowing that you all were getting to have that much wanted & needed family time with each other. Of course there were times when I was thinking of Self and wishing some news was posted. I knew, tho, in my heart and thru God that everything was good. Praise God for His healing hand. You all are still in my prayers of course - prayer of the healing needed in the certain areas and praise to Him for what he's done so far and what's to come in His time. Meanwhile, continue to enjoy one another as sweetboy baby Isaac continues to grow into the young Godly man that God is preparing him to be.
Oh MY !!!! How precious you all are and it is amazing how a picture can say so much. Our God is amazing too and HE has done great things. He will continue to heal little Isaac and you will be home in no time at all. You two are also amazing parents and have shown us all what James 1:2-3 really means !
Praying constantly for you!!!!
BB
Isaac looks awesome and as precious as can be! I am so humbled as I reflect on how you all have taken this journey in stride and continually leaned on the Lord for strength and encouragement. You are such an incredible example for all of us. I am so excited to hear of all of the home preparation taking place! Praise the Lord that "home"is is sight! Continue to enjoy cuddling with the little one!
Stefani McFarland
Praise God for all the continued great news and happenings...& I like the pic where you just so happened to include the Florida Gator swag in the background, haha
Rex & Theresa
We are honored to be so close to one of God's miracles! There is no other explanation for it. Exaulted praises to HIM for bringing Isaac into all of our lives so we can witness first hand HIS awesomeness. HOW GREAT THOU ART!
We rejoice and continue to pray for you all daily!!
Post a Comment