Thursday, November 09, 2006

more details on what lies ahead...

Its hard to believe that we're already 5 months into this pregnancy! Baby Leino has been moving a lot over the past several days, to the point that you can see it happen. Jordan was able to feel him for the first time recently, making this journey even more real for the both of us. He's growing quite a bit. Every morning, I wake up feeling a bit bigger (pictures soon to come). It certainly is an exciting time!

We've been fortunate to qualify for the Perinatal Care Coordinator program at UNC. Based out of the Center for Maternal & Infant Health (www.mombaby.org), our coordinator takes point on arranging all of our appointments, procedures, etc. She will meet with everyone involved in the full care of our baby each month to keep everyone on the same page & moving forward. Accessible to us at any time, she either knows the answer or can obtain the answer to any question we may have as his arrival approaches. What a blessing this is! We no longer have to worry about keeping everyone up-to-date. She'll also arrange tours & meetings for us of all the locations our baby will be treated & everyone who will be working with him before D-day. Once again, God has provided us the best possible care within this difficult situation. He is so good!

Our pediatric cardiologist, Dr. John Cotton, has also been tremendously helpful. Taking the time to personally answer our questions, giving us a better grasp on what our baby's arrival & days following will look like. At this point, we'll have a normal, spontaneous delivery. He'll undergo the Norwood Procedure 3 to 7 days after birth. Following this first open-heart surgery, he'll spend approximately 1 month in the hospital, going first to the NICU, & then the CICU (Cardiac Intermediate Care Center) once he's not in critical condition to continue his recovery. The CICU is a step-down unit for all children who have undergone heart surgery. Once he is taking all medication & food orally, he should be able to go home.

Initially, he'll be fed through an NG tube (naso-gastric) while recovering from surgery to supplement his nutrition intake for better recovery from surgery. He should be able to come home after 4 weeks or so assuming no other complications arise. If for some reason he still needs the NG at the time of release from the hospital, UNC will send someone to our home ahead of time to set it all up for us & teach us how to operate the equipment. Other than this, he will not require additional equipment for life at home post-surgery.

So that's all we know at this point. We're still praying for a miracle by God's healing touch. But even if nothing changes, we know that He'll provide everything we need to make good decisions & care for our little boy, however long he may be here - be it a few days or a lifetime. He is in control & we give Him all the praise for the great things He has done. With every kick from within, I'm reminded that God is crafting his little body & nothing is a surprise to Him. We are so excited for all He has in store for the three of us!

16 comments:

Anonymous said...

Okay, this one made me cry! We are here for you guys! Cant wait to meet this amazing little one! PLEASE let us know what we can do for you guys!!

Anonymous said...

OOPS! That was from me : Jenni Graebe :) It didnt let me sign my name :) LOVE YOU!

Anonymous said...

Wow, Patience....
You're starting to sound like a doctor yourself!!!!

Sounds just like the talk around my house :-)

We are glad you have such great support from the professionals at UNC... And of course, the love from all of us.

Thanks for continuing to share your journey, and your faith!!!

With lots of love, and ongoing prayers! Dr. Rob and Karen

Barbie_B said...

We're still praying that the miracles continue to come. We love you guys!...Barbie

Anonymous said...

I just want you to know that I am keeping your family in my daily prayers. The trust you show in God in your lives is such a blessing to me. Thanks for the website to keep everyone informed on the baby's condition.

Anonymous said...

I'm with Jenni, this one made me cry too. "Baby J" is blessed beyond belief and I can't wait to see his precious little face. Who knew God could use an unborn child to make such an impact on so many lives. Still praying for a miracle and loving you all,
Erin Jones

Anonymous said...

As we all pray for a miracle, you both are teaching all of us what faith really means. Just know that we will be with you through through this season of your lives, just as we have always been for the last 23 years. God is good...all the time!

Baby J's proud Grandpa L.

Anonymous said...

hey its me delea we are praying 4 you 3
<3
xoxoxox
...
i d have a myspace or anything so yeahn.... lOl

Jennifer said...

Hey Patience,
Your don't know me...But I've been going to c3 for about maybe 4 months...and i am on the teens prayer team...and just wanted to let you kno that I and continuing to pray for you and your baby...I hope God continues to bless the both of you...

God Bless,
Jennifer

Maureen Hannan said...

Patience,
All of the Hannans are praying for you and Jordan and your precious little ones. God created this little boy out of love and He will sustain you. We love You!
Aunt Maureen

Anonymous said...

Love you guys. :-) Praying for you as always. Thanks so much for keeping us updated!

~Lindz

RETTAMAN said...

Hi Patience and Jordan,

This is the first time I've read the Baby Leino blog. It is very informative. I will admit that I was unaware of the severity of Baby Leino's health (heart) concern. Please know that you're in my thoughts and prayers....and that God has everything planned out. Thanks for all that you do and mean to C3.

Sincerely,
Gregory <><

Kevin said...

Pai, I just cleaned out our email and came to this...I can't imagine going through this. It is so evident that God is sustaining you. Only by His Holy Spirit and work of grace can you respond in trust and hope. His hand is on you and will continue to hold you - no matter what happens. Thank you for your example. Kevin and I will pray and invite all of our friends to pray. Thank you for sharing your journey and for giving God the glory He so richly deserves! We love you!
Jami Rogers

Kevin said...

Pai, I just cleaned out our email and came to this...I can't imagine going through this. It is so evident that God is sustaining you. Only by His Holy Spirit and work of grace can you respond in trust and hope. His hand is on you and will continue to hold you - no matter what happens. Thank you for your example. Kevin and I will pray and invite all of our friends to pray. Thank you for sharing your journey and for giving God the glory He so richly deserves! We love you!
Jami Rogers

Kevin said...

Pai, I just cleaned out our email and came to this...I can't imagine going through this. It is so evident that God is sustaining you. Only by His Holy Spirit and work of grace can you respond in trust and hope. His hand is on you and will continue to hold you - no matter what happens. Thank you for your example. Kevin and I will pray and invite all of our friends to pray. Thank you for sharing your journey and for giving God the glory He so richly deserves! We love you!
Jami Rogers

Brittany said...

hey patience or jordan or whoever. this is brittany here. i am oh so touched by the babys condition but as im sure you know god does everything for a reason and the baby will still do great things for god in this world. ill pray for you 3
love you guys
brittany