Monday, May 14, 2012

about jacob.. (kind of long)

so, let me tell you about Friday and all the dr appts.. 
so much information to take in, most of which I had already heard or was aware of, but it is some how different when it comes right from the drs. mouths.
baby Jacob has a few serious things going on. first there is the CDH, congenital diaphragmatic hernia.  This is where there is a hole in the diaphragm and organs float up into the chest cavity blocking  growth of the lungs.  In Jacobs case, his stomach and intestines have migrated to his chest and as a result, his left lung has had very little room to grow and his heart has been pushed over to the right.  and now part of his liver is trying to move up also.  It is unknown how affected his right lung will be.  It will be smaller then normal but we dont know exactly how small until he is born. His left lung will probably be very very small and not of much use to him.
Jacob also has some heart defects.  He has "double outlet right ventricle", and "ventricular septal defect" and they were also talking about "tetralogy of flow".  basically he has a hole in his heart and the arteries coming from his heart appear to be very thin.  I dont know how to explain it, but feel free to google any of those terms. 
so when baby jacob is born, he will need to go directly on a ventilator and he will be given medication to keep the narrow arteries  open.  as soon as he is stable (24 hours to a couple of days) he will have surgery to put the organs where they go and to close the hernia.  when that happens the heart should shift back over to the left side.  He may need to go on an ecmo machine, which is a heart and lung bypass machine that pumps blood out of the body, oxygenates it and pumps it back in.  The ecmo machine attaches at the neck into the juggler vein and the artery right next to it.  He can only be on the machine for about 2 weeks and if he doesnt improve in that time, he probably isnt going to and probably wouldnt make it.  The problem with the ecmo machine is that the arteries that it uses are compromised and dont work afterwords and they wont ever work again.  This causes a higher risk for strokes. 
When Jacob is recovered from that surgery, he will have the heart surgery required to fix his heart.
It is possible that either of these surgeries could require other surgeries as a result..  
Jacob will live with one lung.  He could have some delays if there is a lack of oxygen to his brain, from minor learning disabilities to more serious mental retardation.  
Or things could go smoothly, his right lung could be in great shape and maybe we will be really lucky!
the dr mentioned that  putting the stomach and bowels back could be difficult as there might not be enough room for them.  Jacobs body has been developing with out them in place, so he may have a small belly.
It was a very informative but very draining day.  we left at 8:30 and didnt get home until 5:30.  we had time just to go to the appts and for a quick lunch. 
so my precious bloggy friends, please put Jacob on your prayer lists and keep him in your thoughts.  have your friends pray for him.. post this button on your blogs, with a link to this blog post.. 
he needs lots of prayers. 
Im praying that he will be able to live a completely normal life and that he will not need the ecmo machine.  I'm praying for complete healing for Jacob, and also that Vanessa and Tony will handle this with grace and and feel supported.  Jacob will be in the hospital probably for at least 3 months.  at least.. he will be at strong hospital in rochester, an hour away.  They can stay at the ronald mcdonald house, but tony is going to have to go to work...   Vanessa is due June 8th.  
thanks for your prayers girls.. and for spreading the word! 
♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

40 comments:

Linda said...

I am speechless...
you are surrounded by love...
All the best...

Linda

Kim K. said...

Thank you for sharing. I know how hard it is to comprehend within your own family, let along share with all of us. Please know that baby Jacob is in my daily prayers. Josie has tetralogy of flow. Your little sweetheart has something in common with my little sweetheart. Prayers flowing from West MI.

OOAKFairyland said...

Hi Vivian,

I have been following your blog for a long time, now. I guess you could call me a 'lingerer' LOL but really, I am just shy. Anyway, I love your blog and I think you are so much fun! I always look forward to your blog posts. I wanted to let you know that you and your family are in my prayers and I've added baby Jacob's button to my blog.

~Angela

vintage grey said...

Thank you for sharing, and I will be keeping sweet Jacob in my prayers!! xo Heather

E said...

Viv I can't imagine how overwhelmed you and baby Jacob's parents must be, you are in my prayers and I will certainly add you and your family to my prayer lists. Elaine

Debby said...

All this is sad. Not sure how all of you can handle hearing it....but I know you have to know what could happen. I still think it is so good that he has continued to surive and thrive in utero. I am hoping for the very best situation. My little great nephew.....born 2 1/2 months early at 3 lbs. had his intestines on the outside of his body. We knew it just a few weeks before he was born. He had surgery as soon as he was born. There were ups and downs and he stayed 11 weeks in the hospital. He is 3 1/2 now and perfect. I have been praying for Jacob and will continue. Remember there are miracles. ((((((HUGS))))) for all of you. I will put your button on y blog....if I can figure it out.

Sara Evanchick said...

My sweet boy was born with a diaphragmatic hernia last February.

You are in my constant prayers!!

deborah said...

gotcha covered, old girl <3

Emily Dimov-Gottshall said...

Praying for you all and esp. for baby Jacob.

April said...

Viv, I am praying for a healing for Jacob. Thank you for sharing with your friends and know that we all are praying...

Jeanne said...

Oh Viv, so much for a tiny baby to have to deal with. Why do these things happen? Baby Jacob and your family will certainly be on my prayer list.
xo
jeanne

Cindy said...

I am so sorry that you, your kids and especially Jacob have to go through this. But you all seem to support and uplift one another.
I will be sending positive thoughts your way and hope that everything works out well for that sweet baby.
Love ya, Cindy

Erica of Golden Egg Vintage said...

Thinking of you and your family tonight...and I'll be praying for baby Jacob.
Love, Erica

Chenille Cottage said...

Your precious little grandbaby is going to be snuggly covered with the prayers of this Grammy, too! It hurts me to read all the health problems that he is suffering with, my sweet friend!
Thank you for sharing and giving me the privilege of praying for your little cherub!
Lovingly,
Carolynn

Chenille Cottage said...

Dearest Viv,
I just posted a plea for prayers for your little angel on my blog. I know that, tonight, God is hearing our prayers from all around the world!
Fondly,
Carolynn xo

Nestkeeper said...

Viv, I cried when I read this post because my grandson, Jonah had almost exactly the same thing. He was put on an echmo bed. My heart breaks for what you are about to go through. Jonah's DNA was studied for over a year and a gene was found that caused his problems. It's carried by the mother, and effects only her male children. Her female children will be carriers of the gene. My son and his wife have a 50% chance of any son having these problems. I wish you comfort and strength in the months to come.
Sincerely, Debi

Sandy said...

Oh Viv....I have no words....I just want to give you a hug....Love and prayers are being sent as I write this....Sandy

Lily said...

I will pray for little Jacob. Poor little baby to have so much adversity. It certainly makes our every day complaints pale into insignificance. Sending love to him and to everyone who loves him too. Lily. xxx

The Cottage Market {Andrea} ♥ said...

prayers are coming 10 fold my friend...blessings to you and yours whole family and precious baby Jacob...hugs

Enchanted Hollow Designs said...

Vivian,
You and your family are so amazing and are an inspiration and a daily miracle to the rest of us. It is a gift and a treasure to have you in my life and to know you.
Little Baby Jacob has already captured so many hearts. He is surrounded by love and light and courage and, most of all, hope. I am praying for him and for all of you and I will post the button on my blog.
All of us in the Blogosphere are here for you and your family, my friend.
All my love and gentle hugs for all of you,
Cindy O.

My Vintage Mending said...

Many prayers and hugs. I hope you can feel all the support and care we are sending your way. smiles..Renee

Kai said...

Oh, Viv. I already love this lil' human being who is your Jacob. I am holding you and your family in my heart & constantly sending wishes that all will be well! I love you!

Creative Breathing said...

Oh Vivian, A lot of prayers will be headed Jacob's way. Hugs to you as well my friend. E

Fran said...

My heart, thoughts and prayers go out for baby Jacob, his Mommy, Daddy, Grandma, Grandpa and all his family everyday. I'm sending lots of healing prayers to God for him to be healed.
Luv U,
Fran

LBP said...

Lots of prayers going our for baby Jacob and his parents and for you of course.

mimi'sdarlins said...

I read about baby Jacob on Carolynn's blog (Chenille Cottage) and want you to know that I will continue to keep your precious little grandson in my prayers.

Heidi said...

My prayers are coming from Utah! God is good and loves your family, and, somehow, all will be well.

The Other Side of Me said...

My Lord Vivian. I have never heard of this and it has left me speechless. He sounds like a little fighter already. I hope the doctor's can do everything they can for him. I will keep you all in my thoughts and prayers.

Tammy

Kim Budash said...

Viv:

You and your family are in my constant prayers. I will pass along your message to the girls where I work and also put Jacob on as many prayer circles as I can find. God will give you and your family the strength that you need in the coming days. Remember, he never gives you more than you can handle, although sometimes we have to wonder. Take care, LOVE your blog, and you are in my prayers.

GARAGE SALE GAL ~ Deb's Earthly Delights said...

PRAYING
crying
PRAYING...
Thank you for the update..
love,
deb

Tamera @ the Stone Fence Cottage said...

Praying
and believing...
Our God can do miracles!!

Stephanie said...

The Pregnancy Center in Grand Junction, CO is praying for your little Jacob.

Shelley said...

Praying for your sweet little Jacob.
Blessings

donna kelly said...

prayers are on their way -- and I will pass this along and ask for more. Your recent previous posts have shown how strong and close and fun your children are so they are they love! HUGS -----donna

Scrap for Joy said...

God can do wonderous things. I hope you can all feel His love and support while we lift Jacob in prayer that he will be whole and healthy.
xoxo
Joyce

Cheryl said...

Oh my... daily prayers here!

ImagiMeri said...

Dearest Viveroni,

Along with prayers for Jacob (bless his heart, literally), I am also praying for you and your children. This is an incredibly difficult time for ya'll, and I pray for a miraculous outcome.

On a lighter note, please check your email as there is a special message for you from a new friend.

Love ya'
Meri

Ele at abitofpinkheaven said...

Oh dear Vivian, I am at a loss for words, but know that I will be sending lots of prayers your way. hugs to everyone.

KJ@letsgoflyakite said...

My thoughts and prayers are with you, Vanessa, Tony and baby Jacob. I know the due date is fast approaching.

Becky K. said...

If I may offer you words of encouragement....our Jonathan was born 21 years ago with this very serious condition. We found out shortly after his birth. They told us the stats. Not good. But today Jonathan is 6'7" and strong. He did have some learning challenges but learned how to work through them. He is a security guard and doing very well.

Only God knows the exact plans he has for Jacob.... I'll be praying and following along.

hugs.
Becky in Lancaster, Pa