til we meet again...

balloons for Jacob.....

We went to the cemetary at 7:00 this morning and filled balloons with helium.  started out with about 125 balloons, but probably ended up with about 100 after we "lost" a  bunch and a bunch more popped!

There were still enough for everyone at the funeral to have one, (some greedy grammies had two!)  then 1...2...3...  we all said "we love you jacob" and set them free to gently soar up into the sky.. for our precious jacob.

We are all emotionally and physically exhausted and the rest of this weekend will be spent relaxing.

thank you all for all your love, support, prayers, cards, and flowers!  You're all the best. 

"Jacob... you will always be in my heart.... 

till we meet again..."

 ♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

Obituary

Jacobs obituary in yesterdays Medina Journal
June 26, 2012

Jacob Vincent Neroni

Anonymous The Journal-Register The Journal-Register Tue Jun 26, 2012, 04:41 PM EDT

MEDINA — Jacob Vincent Neroni, passed away peacefully in the arms of his loving parents, Anthony Neroni and Vanessa Thompson, on Sunday, June 24, 2012. Sweet Baby Jacob was born on June 8, 2012 at Strong Memorial Hospital with a Herniated Diaphragm and Congenital Heart Disease. Jacob was strong and surpassed many hurdles in his short time on earth. His courageous spirit has left an imprint on so many souls and will be remembered forever in our hearts.

Jacob is survived by his parents, Anthony Neroni and Vanessa Thompson of Medina; grandparents, Anthony and Vivian Neroni of Lyndonville, Kevin and Kathi Thompson of Derby, Dawn Thompson and Paul Fox of Middleport; great-grandparents, Dorine Neroni-Walsh of Greece, Roger and Carol Long of FL, Catherine Lewis of FL, Larry and Linda Cummings of Clarence, Shirley Thompson of Lockport and Great Great Grandmother, Edna Cummings of Akron. Jacob is also survived by many loving aunts, uncles and cousins.

Friends may call on Thursday (6-8 PM) at the Cooper Funeral Home, 215 West Center Street, Medina, where his service will be held on Friday at 10 AM. Interment will be in Boxwood Cemetery.
Visit www.cooperfuneralhomemedina.com to share condolences.

I dont like this place

aa

Im still here.  ... well, Im here and surviving... functioning barely.  and all the time while I struggle, I just cant imagine the level that the kids are struggling on.  Little breakdowns in between the mundane things that make up a day or night.  I keep finding myself walking around the house from room to room..

I really just dont know what to do with myself.  life seems to have lost its pizzazz.  (how the heck do you spell that anyways?)  Thought about going to the beach today, then I think.. why bother?

so very badly need to work in my yard.. and then I think... for what?   

the calling hours are tomorrow night and the funeral on friday.  

I'm out of teabags.  need groceries and I just cant seem to make a list.  

Im very surprised that I am stuck in this place.  I didnt expect it. 

anyways.. just checking in.

♥♥♥jacob♥♥♥

The redheaded chaplin, sang this song after she baptised Jacob at 2:30 this morning...

"Jesus loves you this I know, for the bible tells me so.  LIttle ones to him belong, they are week but he is strong.  Yes Jesus loves you, yes jesus loves you.  yes Jesus loves you, the bible tells me so."

Jacob is now in Jesus's arms.  at 15 precious days old, Jacob went to heaven as an angel.

grammie pie loves you soooo much jacob pie and she will see you again someday  you can count on that.

♫♪♪♫♫♪♫♪♪♪♫♫♫♪♪♫♫

friendship, prayers and jacob

This little patriotic friend came to hang out with me for the 4th!  sent to me from one of my dear blogger friends, Kim.  isnt she adorable?  So is Kim..  thank you sooo much my friend.  

Just need to tell you that you are all awesome.  I love that I can count on so many people who Ive never met in person (though some of you I have met) to pray for Jacob and Im happy  that you are all invested  in his precious life.  I just hope you never get tired of hearing about him!  His surgery went well yesterday.  He is a little fighter.  I am grateful.  I was at Jacobs side just looking at him and praying for him and listening to a couple of his drs talking and I was totally in awe of how freaken brilliant they are.  Their levels of intelligence and competence is amazing!.  I am so grateful that there are brilliant people taking care of Jacob.  And again, so thankful for all of your prayers.

so a while back I recieved a little package in the mail.. a message in a bottle! Once I figured out how to open it, I found a special little invitation to go to canada for a weekend of girl time and crafting at Sandy Camardas.  I have been looking forward to going since then.  the past couple weeks I was up in the air as to whether or not I would be going because I didnt want to leave Jacob, my son or Vanessa.  Im am very nervous about being away.  but I am going.  Jacob is in the best hands possible and I need to get away.  I am really looking forward to spending time with some girlie pies and kicking back a bit.  I hope I am able to relax.  Ive been sooo uptight and stressed and worried.. I need to go. 

so I'll be leaving in about an hour to head to the airport to pick up Lulu.  We'll get some breakfast and make a couple store stops to pass a little time before Nat is free from work and then we'll hook up with her and head to canada!  woohoo!  I'll be taking lots of pictures to show you when I get back!

Returning on sunday, but I will probably go directly to the hospital before coming home..  

Im presetting a post for tomorrow with pictures of the the swap piece I made and also of the gifties for the girls.. I didnt make my gifts for the girls I bought them from another artist.  under the circumstances I just couldnt make them.. but they are going to love them.

OKeedokie.. Please keep praying for Jacob to have a quiet stable, uneventful weekend of healing.

I seriously have butterflies in my stomach at the thought of  being 3 hours away from the hospital... but my daughter is ready to come get me if I need to go home.   please pray that doesnt happen.. 

ok.. got to run!! 

Love love love you all!!!

xoxoxoxoxoxoxoxoxoxooxoxoxoxoxoxo

surgery in the morning...

Baby jacob is having surgery in the morning.  I spoke with the dr tonight and although the procedures themselves are not time consuming or difficult, the risk is in stressing Jacobs fragile little body.  He is now off the ecmo machine and using the ventilator at about 70%.  I asked the nurse how long he might need it and she said different for every baby, but that she thought it would be a few months.  she said that he might still be on it when he has his heart surgery.  I asked how long she thought he would be at the hospital .... 

she said could be 6 months.....

praying praying praying.....

.................praying................

chattering and a jacob update!

Good morning blogland!  wow.. its 6:34 am.. and Im sweating already!  I thought I was supposed to be a princess.. and princess's surely dont sweat!!  Oh well, gonna be a scorcher here today.  perfect day for the beach.. but no beach for me today...I've got to go to work.   

speaking of work, these are all picks of my work office!  You didnt think I wouldnt decorate there for every holiday.. just like I do at home only on a much smaller scale did you?   

I have to have cute things to look at while I'm at work.. or Id only be thinking about going home all day! 

soo.. in jacob news.. ...

a little bird told me (that would be little tony..)  that he was doing good!  that his lung, (or lungs.. not sure about the little one) were inflating.  They were able to turn the ventilator up 50% and the ecmo machine down 50%.  and that they had the baby taking 50 breaths a minute.  Today they are going to test him with the ventilator up all the way and ecmo off!  then if all goes well he is scheduled for surgery for tomorrow morning to come off the ecmo and to close up from last weeks surgery.   There is some risk of bleeding as he has been on blood thinners while on ecmo, so we want to be praying for his blood to clot well..

I'm supposed to go away this weekend...I will be packed and ready to go, but I wont know for sure until right before its time to go if I'm going or not.  I need to make sure that Jacob is stable after his surgery first. 

♥keep praying♥

I so appreciate all of you!!!!!

I need to get ready for work.

 so see yas later.

xoxoxoxooxoxoxoxoxoxxoxoxooxoxox

pies...

baby pie 

If youre praying for Jacob, please pray hard today that his lungs would open up and inflate!  thats what the doctors are waiting for.. Its what absolutely needs to happen in order of Jacob to survive.  

I love our little Jacob.. I just want him to be well.. so we can all hold him. 

berrie pie = breakfast!

I made the cutest patriotic piece this week.. dying to show you but its for my every holiday swap with my friend Kelly.. so I cant yet... I think I need to make another one for myself though.. its so cute.. 

have a great day!

♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥♥

michaels and Jacob update

  I had a pretty quiet weekend. saturday I went to the hospital and to michaels and yesterday I stayed home most of the day, then went to my daughters for fathers day dinner and played with torry pie.   Tony and Vanessa left the hospital and came home for a few hours so they were there too. boy.. did we have some storms!!

Has any one been to michaels lately?  You  should see the new stuff they have for jewelry making there.  really neat stuff!  I bought a couple sets.   Im gonna make a necklace to wear this weekend when I go away to canada !  (well, thats if the baby is ok.)  Have I mentioned about going to Sandy Camardas for a girlies art retreat weekend?  its going to be so nice to hang with natalea, sandy, Lulu, Grace and Tammy!  My gifties are all ready to go and my swap piece is finished and just needing to be wrapped up as pretty as I can make it!  Im picking Lulu up at buffalo airport at 8:00 am on friday morning!! woohoo!!!

please God, let baby Jacob be very very stable this weekend!

 

In Jacob news, Jacob is now 11 days old!  today they are going to turn up the ventilator and do some other stuff, not sure exactly what, to start preparing him for weaning off the ecmo machine.  JAcob had two very quiet uneventful days of resting and healing.. so hopefully hes ready for this.  Praying praying praying!!  he still has a long way to go.. He will need surgery to take him off the ecmo and also at the same time they will close him up from the surgery he had last monday.  I think thats how it goes..  Dont know what day this will happen.

Im amazed at how the kids keep all of this in their heads and remember the big medical words and terms...  I need it all fed to me in a very simple format!  SEriously!

OK.. so... Im hoping that things go fine and that I can get a full day in at work.  I'm planning on going up there right after work tonight. 

have a great day girls!

xoxoxoxoxoxoxoxoxoxoxooxoxoxoxo

jacob and stuff...

Did I ever mention that i got a new car last week?  Ive been looking for one for months.  Finally found something I liked and just in time as I really needed it.  my old taurus would have been terrible to drive back and forth to the hospital everyday, probably would have overheated and died!! 

Torry pie spent the night with Grammie last night.  He just kicked back and relaxed on the car ride home!

My new car (new to me car) is a mercury Milan.  It is very nice.. fully loaded, and comfortable to ride in.

I picked it up last saturday morning...  guess how many miles Ive put on it this week????????

Eleven hundred!!!  thats from all the trips driving back and forth from the hospital. 

It has surely been one of the hardest and most emotional weeks of my life.   I am exhausted.. and if I am... I imagine nessa and tony are 10 times more exhausted then I am.  Those poor kids are troopers.. but I guess they have no choice, do they.  They do have a beautiful little baby boy though.  I did not take any pictures the last couple times Ive been up there. As everything looks basically the same.

(torry is perplexed about this dolls fingers... lol!  He was sort of amused with grammies baby doll!)

baby Jacob has had ups and downs this week.  When they removed the packing on wednesday to check where they did the surgery, they were disappointed that his intestines were still blue..  they had still not received enough oxygen to  pink up.  the doctors had hoped for improvement.   then Yesterday morning they checked again and they were pink!  nessa and Tony were feeling very encouraged by this!  Little Tony went back to work on thursday .. a very long shift.. 12 hours.. then back to the ronald mcdonald house. And yesterday he did the same, only ended up leaving work and heading back to the hospital early.    Baby Jacob, after having such good news with the pink intestines, had some problems.  His numbers all fell..   he plummeted.  (spelled??).  They were very concerned and couldnt figure out why it happened.    they were concerned that it had to do with the candelus (the tubes in his neck for the ecmo machine.  What ever it was it was corrected.  though the doctors said that it could happen again.  Thankfully it has not since then.  Please pray that those veins in his neck hold up for as long as they are needed for the ecmo machine.  today was another uneventful day for the baby.  I think those are the best days.. quiet and peaceful.  to me that means he is resting, healing and getting stronger. 

Robby and Marlaina... awww..arent they adorable?

OK.. its after 11:00.  I guess I'll go to bed... I am so tired.. today when i was driving too and from the hospital I was afraid to blink!  I thought Id fall asleep if I did!  I hate that feeling.

Again.. Thank you for all your prayers.  and please forgive me if I'm not getting over to your blogs and leaving comments.  I've very overwhelmed and cant keep up very well right now. 

sweet dreams!

zzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzzz

Jacobs corner of the world

This is jacobs corner of the world.  He has his own nurse 24 hours a day and as long as he is on the ECMO machine, he also has a 24 hour a day ecmo man.

yesterday Jacob has some problems.. He had air in his chest caused by a leaking right lung.  they had to go in and suction the air out and decrease the pressure from the ventilator.  He had problems with the ecmo yesterday too, they had to cut the stitches and move the tubes deeper.    This poor baby has such a long hard road ahead of him and his situation changes from moment to moment...

I really hesitate to post this picture of him.. it seems so gruesome.  but I feel like your all part of this because of your dedication to pray for him.  I want you to see how beautiful he is and how badly he needs your prayers.

We took Tony and Nessa out to Longhorns for a great steak dinner last night.  I think it was good for them to get out of there and to have a good meal.  My heart just breaks for these kids.

And here is grammie wackadoodle!  wasnt gonna post this one for sure.. but then I thought I look like a cartoon charactor and thought.. "this ones for jacob pie!"

and then.. theres grumpy old grampy..

I'm going to work and hopefully staying the whole day..  Not sure if I'll go up to the hospital today or not.  LIttle Tony was going back to work today.   ITs going to be a tough day for him to leave nessa and the baby there alone and for Nessa to spend her first day there alone. 

the hospital is over an hour away for me, not to mention that gas is expensive, so at some point I'm going to have to limit myself to every other day... ... It kills me to just think that..

OK.. I do need to get ready for work.  feeling a tiny bit weepy at the moment.. but I'm going to do what i need to do and get moving.  

Keep praying..

♥♥♥♥♥♥♥

day 6...

another quick update... I seriously had no clue what day today was, until someone on facebook wrote over the hump day.. I couldnt figure it out for the life of me..  since friday all the days have become one!   yesterday I went to work for a half the day.  then ran home and made chili, an awesome salad and special brownies.. (not the special brownies from the 70s!! lol!)  to take up to the kids.. they had been eating so much fast food, tony was dying for a salad, and chili sounded good to nessa.
I didnt get home til late lastnight, mostly because I was half way home before I realized that I had Marlainas car seat in my car and had to turn around and drive all the way back to the hospital so that Robert, Tiff and Marlaina could come home too!  (tiff and the baby rode up with me and met rob there).  when we all got home Tiffany made hotdogs and I made milkshakes and we were eating chili dogs and milkshakes at a terrible hour for dinner last night!
While I was in with the baby, they drs were concerned about somethign they saw on his chest xray and there was something going on with his breathing.. but it turned out to be mechanical with the breathing.. remember he is on a ventilator and the ecmo.. and they are doing all the work of this lungs and heart. 
what they saw in the xray they think is an air pocket that if it gets any bigger could put pressure on his heart, so they are watching in closely.  keep praying!
he was fairly stable last night and everyone was breathing a little easier.  I think the kids had gotten a good nights sleep the night before.  they are such troopers..
Im going to head up to the hospital shortly, but first I have to clean up this house a bit.. it is a total mess... SERIOUSLY!  that and I have NO groceries!  I am a total mess myself.   Where the hell is my fairy god mother!  never mind... send her to tony and nessa.. they need her more then I.  
I would seriously give up every thing I have and my own life for that baby and them right now.  when I think of that sweet baby lying up in the nicu attached to so many freaken tubes and machines.. it just breaks my heart....
thanks for all your prayers...

surgery update.............

Been at the hospital all day, just home at 8:30.  They took Jacob in about 9:30 this morning and brought him back around 3:00.  they ended up having to put him on the ecmo machine,  (heart lung by pass machine).  Jacob was missing the whole left side of his diaphragm and everything was up in his chest cavity.  his organs were blue meaning they were not getting enough oxygen.  they had to create a piece for the part of the diaphragm that was missing.  his lung on the left side is the size of a chicken nugget.  He would not survive with out the ecmo machine.  he has a 40 % chance now. just keep praying.. 
I'm sorry to keep asking for prayers.. but I have too.  He needs them...
come on God.. please.

1baby, 2 babies, 3 baby pies!!

The kids just sent me this pictures on my cell phone a bit ago.. they said he was doing a little better  and they got to kiss jacob on the forehead tonight....

 If he stays stable through the night, they will probably go ahead with his surgery in the morning.

This is overwhelming for them.. and they are struggling.  Vanessa should be released from the hospital in the morning and they will stay at the ronald mcdonald house which is right in the hospital.

I know lots of prayers and good wishes have been sent out and we all appreciate it. please dont stop.

xoxoxoxoxoxo

 In other news...torry came to the hospital on friday and I kept him busy while his mommy and daddy visited tony and nessa..  I bought him this awesome balloon and we walked the halls of the hospital for an hour.. he just kept walking and talking jibberish and laughing out loud while pulling that frog behind him.. he's such a character!  he had every single person we passed smiling and laughing!  

he's the funniest little guy, pretty much just freaken hysterical! Then his balloon blew out the window on his way home! poor torry pie... LOL!

This afternoon he showed us that he is just like his mother.. hes a beach baby!  Again, he was a riot..  except that he did fill his mouth with sand a couple times.  and with a rock once too.. everything is fair game to Torry!  If it will fit.. he thinks he should put it in his mouth!

And then theres this little princess pie!  I stole these pics from her mommys face book because the ones I took of her today didnt come out so great! 

Isnt she freaken sweet? She is such a little doll.. I just adore her!

I cant wait til baby Jacob can join in the fun with these two.

we really didnt end up with much beach time today.. we were at the hospital til 2:00 and by the time we picked up some lunch and got to the beach we were only there a couple hours....

 

I need more beach time.. it was a beautiful day though  and we drove my new car which was nice! it has a sun roof and it was fun to drive with that open.

ok.. I'm off to hit the shower and go to bed.. I dont know what to do in the morning about work and the baby's surgery..   I really need to go to work.. I can leave early  though.

sweet dreams

♥♥♥♥♥♥♥♥♥♥♥

♥please keep praying for jacob♥
this is for jacob

jacob

"PLease Dear God...Let this precious baby survive all this...  Let him be strong and healthy.... amen "

this is sooo hard...  

Jacob had a rough night last night.. His blood pressure and oxygen levels dropped very low and he had to be given a blood transfusion...

then tonight again after they moved him around a bit the same thing happen.  

yesterday his blood oxygen level was 80.. tonight it was 60..    Please keep praying.. and forgive me if my blog becomes all about Jacob for a while..  

oh.. i got a new car today.. but it doesnt excite me in the least..  I cant think of anything except jacob.  I had a melt down tonight. no one wanted to go to the hospital with me, or could go..  Tony said he'd take me after he did something else and I sort of fell apart while on the phone with a dear friend... she came and went to the hospital with me..  she wasnt allowed to see him though.  I did.. I was surprised to see him hooked up to so many more things tonight.   he even has ivs going into veins in his head.. his mouth,both feet, both arms his head his chest, his belly and even his little baby boy parts are all attached to stuff.  I saw him by myself and just stood there praying for angels to surrround him and for God to allow him to live. 
♥

Im in canada!

these are my gifties to the girls!  I had the beach beautys made by Crystal of vintage by crystal! 

arent they freaken cute?

then I added little flamingos to each girl...  I am now officially out of flamingos!.. I guess that means I need to go back to the "brassballs bar" in ocean city Maryland to get more!  LOL!

the little beach pals came from the christmas tree stores.. so cute arent they?

and these next pics are of my main swap gift.  I hope whoever gets it likes it!

It is very heavy!  I had fun making it.

Im preparing this post on friday morning.. but setting it to post on sat morning..

so the girls will have already received their gifts.

Have a great weekend everyone!

xoxoxoxoxoxoxoxoxoxo