Friday, December 7, 2007

And down again....

I don't even know where to begin trying to talk about this week.

I'll start with Katie. Tuesday I had to take her for her follow up appointment with the Pediatric Cardiologist. While she was still in the NICU they found a 'small' murmur... so small they barely mentioned it to me. They said it was no big deal, would probably go away on it's own, don't worry about it. So I didn't. With all that's gone on, I almost forgot about it.

I'm sure you can already see where this is going.... the murmur not only didn't go away, it got much worse. She has a Pulmonary Valve Stenosis (PVS). Basically a valve is too narrow and getting narrower, forcing one chamber of the heart to work too hard to push blood through. It isn't too dangerous right now, but as time goes on it will permanently damage the heart. So we have to take her next week to Newark Beth Israel to meet with the doctor who's going to insert a balloon into her heart and open up the valve. She also has the same thing Jack had, though not as severe - the PDA - which is a valve that should close and never does. So they will attempt to fix that too while they're fixing the PVS.

The cardiologist said "I'm so sorry, I'm sure this wasn't what you expected to hear." I felt like saying, no, honestly, it's exactly what I expected to hear. That it's worse, it's gone from mild to moderately severe, we've got to go to ANOTHER hospital and meet more doctors. Because that's just the way things seem to be going for us.

Again, I think the word for how I felt was numb. My mom described me as stoic, but no, it was more numb.

But, it is fixable, and Katie is a chubby, happy baby right now, growing and gaining weight and it will be fine so I can't worry about it. I just have to believe it will be okay because it has to be.

Wednesday we left for Philly to see Jack. We met with his doctor on Wednesday afternoon.

Let me put it this way. I take it as a really bad sign when the doctor starts to cry.

When we met with her last time, and it was all 'great news' and tests were fine, she said they were going to have neurology look at him again, just to see if they missed anything. The neurologist this time noticed that Jack can't look to the side. He can look up, down, cross eyed, but not to the side. When she said it, it was like a light went off.... he has never looked to the side, that I can remember. But I never noticed.

This is not good. The neurology department swears that when he was first admitted and they examined him, he COULD look to the side (though I have my doubts). That means that something is going on with him that is degenerative, and combined with his clubbed feet, poor muscle tone and 'floppiness' as they call it, it is probably muscular.

I assumed that the genetic tests they had done on him previously were for muscular diseases, but they weren't. I have no idea why and should have asked but honestly, I guess I didn't want to know. I wanted to believe them if they said they didn't think it was a muscular problem even though St. Barnabas (and my gut) said it was.

So today a specialist is coming to give him a muscle ultrasound, and depending on what he finds, they will order further tests. The doctor said, none of these things they're testing for are good. She said she was so so sorry to be telling us this kind of news.

I said, I knew it. Deep in my heart I've known this for a long time and it almost was a relief to have her say it. I've been trying to convince myself otherwise but I knew something is really not right with Jack, and the older he gets the more I can see it.

PJ asked the doctor, if Jack has any of these diseases she's thinking of, will he ever come off the vent? She said no, probably not. He said, what happens then... he lives his life on the vent? She said, that is a terrible quality of life for a child. The hospital would suggest stopping all 'treatment' if there was no hope of him ever breathing on his own, and his disease was degenerative and incurable. In other words, they would let him die. That's when she started to cry. That's when I started to cry and really haven't stopped since.

She also told us there were two babies in the NICU right now at that point.... not receiving any 'treatment.' Just waiting for them to die. I can't stop thinking about that.

Nothing is definite, we are still a long, long way from that, I know. But I can't get past my feeling that he will never be coming home. I try to imagine him here, sitting on the couch on his Boppy with his sisters, or sleeping in his crib under the blanket with his name embroidered on it, and I can't. I can dream it. I dreamt Wednesday night of walking in the hospital, and he was sitting on my mom's lap with no vent, breathing, his arms waving and his legs kicking. I dreamt it over and over again. But when I try to picture it as a reality, it just never comes.

I can't imagine living my life without Jack in it. I can't imagine a day without him, the world without him. My heart breaks at the thought of the girls growing up without their brother. Of PJ not having his son. The thought that Jack will never get to live his life, grow up. Have a birthday, a Christmas, even just a day outside a hospital.

Yesterday I held him for hours and he cuddled into me and slept, never beeping, not a peep from the monitor. Then when he woke up, he held onto my finger and looked at me, really looked at me. I would say "Jack, it's your mom!" and he would open his eyes so wide.

I don't even know what to pray for anymore. For a miracle? For him to live, no matter what that life is like? For him to not suffer anymore, no more vents and tests and needles and suffering? I don't know. I mostly pray to heaven to just take care of my baby, whatever that means.

Yesterday:



155 comments:

Sommer said...

OH Megan My heart goes out to you and PJ! I cant stop crying. Im still praying for Jack and the girls and most of all mom and dad. Thanks for keeping us updated.
((((HUGS)))))

Lisa said...

There are no words, Megan...I'm praying for all of you........

Lisa

Regina said...

Megan, my heart is breaking. I'm so sorry. Please know you are all im my thoughts and my heart.

Regina

Melissa said...

I'm so sorry. Please call me when you are up to it. I'm home and here to help you however you need it.

trpdmosgrl said...

Megan, My hearts goes out to you. We are continously praying for PJ, the girls and your family. Your strength is truly admirable. Lots and lots of prayers! Hugs- Megan

Anonymous said...

Megan i'm in tears with you. I keep praying for that miracle that Jack is home healthy and with his family. Sending all of you tons of strength.

michelle said...

Megan,
I wish I could come over and give you a hug.
michelle ( mish2378)

Jackie said...

Megan I am so incredibly sorry you got more bad news. You and your family have been, and will continue to be in my prayers.

Anonymous said...

Megan I am so sorry. I will not give up praying for little Jack and most especially you, PJ and the girls.

Natalie
Natalie042205

Lynn said...

(((HUGS))) Saying lots of prayers for you.

heeda said...

Oh Megan, my heart is breaking for you and PJ. Jack continues to be in my thoughts and prayers. I'll be praying for a miracle for you!

Heidi (heida73)

amy said...

I am so sorry Megan. My heart goes out to you and your whole family. You are in my family's thoughts and prayers.

Anonymous said...

Megan, I feel horrible for you and your family. I am praying for Jack and all of you. And I just want to say that Newark Beth Israel is a great heart hospital and she will be a good hands.

Christine76

amber said...

i'm just so very sorry.

between me, my mom, my mother-in-law and her whole big extended catholic family, we're all praying for you and yours.

{{hugs}}

Anonymous said...

Megan, I will continue to pray for your family. I'm so sorry that the news wasn't good but we can still have hope.

Anonymous said...

{{{HUGS}}}}

-Kathleen

Adrienne said...

Megan, my heart is breaking for you and PJ right now. You all continue to be in my prayers and heart. I am so sorry.

Christine said...

Megan,

I have no words but please know I am praying HARD for a miracle for Jack. I am praying for all of you.

The Hyperfertile Infertile said...

Oh, Megan. I'm so sorry. I wish there was something I could say or do to help. Please know that we're all thinking of you and praying for Jack and Katie.

pam said...

Oh no no no. I can't put into words how sad I am for you. How heartbreaking this all is. How much I hope and pray that Jack will pull through. You guys are all in my heart throughout all of this. :(

Anonymous said...

Just remember that God has a reason for everything. Even if it seems unfair, there is a reason. God will take care of everything.

Crystal said...

I have been following your blog recently and I am soo sorry for what you are going through. You and your family is definately in my prayers.

Gina said...

Megan
I am so sorry for what you are going through, when I say my prayers at night I pray for Jack... You and PJ and the girls are all in my thoughts as well... All my love and prayers,
Gina

marree27 said...

I'm so sorry to here this, i'm praying for Jack that God helps him through this time, that some miracle happens to make him better. My heart goes out to you and your family, you're such a strong person and your strength continues to amaze me.

Maria

Anonymous said...

We are all praying for your miracle and we will keep praying until Jack is home with you guys and all of your babies are healthy.

Anonymous said...

Megan, PJ, Katie & Charlotte,
Please know that we're all here for you in ANY way you need. Please don't feel like you can't reach out to ask for anything, a coffee, a meal, a hotel room. Anything. You're all in our prayers.

Andrea (pomps)

rachael said...

I think about you, your family and those little ones every single day. My prayer for you all, and especially little Jack, is that God grants you the strength you need to see you through whatever lies ahead. Though I know it is impossible, my heart goes out to you with the sincere wish that there was something I could do to help ease your pain.

Anonymous said...

Jack,

Hang in there little guy. Please know we're all praying for you & wishing the best life for you.
We all love you very much. Hope you get well very soon.

Andrea (pomps)

Gillian said...

Megan, I have no words. I can only continue praying for Jack and as you said, asking God to take care of him..

Hugs and prayers!

Nicole (Nikkid330) said...

Megan, I am so very sorry. My heart is breaking for you. Your family is my prayers. I hope you get a Christmas miracle.

Anonymous said...

I'm so sorry for what you and your family are going through. Know that you, your husband, and your beautiful children are in the hearts and thoughts of many people.

Arlene said...

Oh Megan...I'm so sorry. You, PJ, Jack, Katie & Charlotte are in my prayers. Don't give up on asking for miracles because I certainly am not.

Anonymous said...

Tons of hugs and prayers.

Marissa
rissainthesky

Jessica said...

I was brought to this page by a post on the Nest. I am praying for your family and especially for your son. You seem to have a very strong faith and I hope you don't mind, but I would like to recommend a book to you. It's written by a Christian author David Jeremiah. It's entitled A Bend in the Road. I have found the utmost comfort in this book whenever my life takes a turn. I hope that you will as well. That is if you can find a peaceful moment to read! Again, my thoughts and prayers are with you and your family. May God Bless you all.

c said...

I've been reading your blog since before your children were born. They been in my thoughts and prayers. I haven't responded before but I have to now. I'm so sorry for little Jack. I have tears running down my face for you and your family. There are really no words of comfort. I'm so sorry.

Anonymous said...

I am praying for baby Jack as well as your girls and your family. Please don't give up hope, miracles do happen. I will pray for a miracle with baby Jack. God bless.

Jessica said...

I have no words... Please know that we are still praying for you.

Anonymous said...

Megan, I am so sorry to hear this mews. I will pray for heaven to take care of your little ones. Be Blessed!

Kimberly and the GA Guinn Triplets
www.guinnfamilyhome.com

Stef said...

I am so sorry, I am pray for you and your family!

Lindsey said...

Oh Megan, my heart is breaking for you. I have been following your story from the nest, and have been pulling for your little guys for so long. I hope and pray for strength for you, your family, and especially little Jack.

Leah said...

I don't know what to say...

I am so incredibly sorry for everything that has happened. You and your family will continue to be in my prayers.

Alyson said...

Dear Megan and PJ:
I have been silently reading your blog but today's entry prompted me to post. I am a triplet myself (33 years old) and was 3 lbs 5 oz at birth (between your Charlotte and Jackson). I was born 10 weeks early and had corresponding developmental issues. I am 100% normal today (depending on who you talk to :).

Medicine has added exponentially to its knowledge of multiple/preemie care since 1974. I know it's easily said from the sidelines but it sounds like an army of professionals are doing their best to help the girls and Jack, and wonderful things can and do happen. Hang on as best you can, and if tender thoughts from one triplet to another help, your children have all of mine. Best, Alyson

Anonymous said...

Megan,
I don't have words to say that will make this situation any easier on you and PJ, but my thoughts and prayers are with you and I am really praying that that sweet little boy Jack has a chance at all those things in life that you mentioned and much more!!
Gia
-darrensbride

Anonymous said...

Megan, I'm so terribly sorry to hear your news. I will pray for all of you and I will pray for a miracle for Jack. Elizabeth(mrs.hj)

Leona said...

I am so sorry. I sit here in tears while thinking what you may be going through. I am praying for Jack and the girls.

Leona

denise said...

Megan I cannot imagine what you and PJ are going through. Although I am not a religious person, with all my heart and might I pray that all three of your children will be ok and pull through this difficult time.
Many many thoughts and prayers to you all.
Denise

Anonymous said...

Megan, there really are no words. My heart is breaking for you and your family. I'm keeping all of you, especially Jack, in my thoughts.

Sarah
oct11bride03

This Mom said...

Megan,
I have been reading your blog since before your babies were born. I don't know you personally, but have followed your journey with compassion and hopefullness. I sense your devastation at this turn of events and feel heartbroken for you. Please know that I am rooting for Jack, as well as the rest of your family.
A Colorado mommy,
Tyffany

Emily said...

I'm new to your blog. Someone left a comment on my blog and I wandered over here. I'm so sorry for the news you received about your son. My daughter was a preemie (25wkr) and came home on a ventilator with a tracheostomy. She has multiple problems and is now suspected of having a metabolic or mitochondrial disorder.

My heart aches for you. No parent should ever have to receive the news you got but miracles do exist and Jack is with you right now.

Anonymous said...

God bless Jack and your entire family. I am praying for you very hard right now - with lots of love and warm thoughts,
Katie (from the Nest)

CRS said...

Megan, STILL PRAYING and sending LOTS OF VIBES for Jack.

HUGS
--smallbutfeisty

Mariat1978 said...

Megan i'm in tears with you. I keep praying for and your famiy and that Jack comes home healthy .

Anonymous said...

Megan, there are just no words.......my thoughts and prayers continue to be with you and your family.....

Jackie (ckj520)

Gianna said...

Megan, Your family is my thoughts and prayers! We are all praying for you.and pulling for Jack!

Laura (Another Nestie in FL) said...

I'm sure that you've heard this a million times but I say a prayer for you and your family each time I look at your blog! I especially pray for little Jack. And I will continue to do so. I only wish there was more I could do for you.

Anonymous said...

Megan-
You guys are in my thoughts and prayers everyday.
My family and friends are praying for you too!
Shannon

Jessica said...

There are no words to write that can convey what I feel. I am praying for your family.
Jessica

tbonegrl said...

I cannot begin to telly ou how moved I am for you. Not only because I see such paralls to my life: My name is meghan, I just had 32w twins, and my "baby that had so much trouble" is named Jack as well, but because I know almost everythign you're going through and I feel the ache like I'm living it all over again. Please know that I am praying for you, and even though that isn't much solace, the big guy can stand to hear prayers for your babies from one more person. Everyone on the nest is praying for you as well. Come on, baby Jack...we're pulling for you!

Rachel said...

I know that I don't know you, but I can't even tell you how much my heart goes out to you. I will keep you all in my prayers.

God does do miracles, and whatever this all looks like in the end, it will be a miracle.

Liz said...

I'm thinking about you all & praying praying praying.... I am here if you need anything at all.

Lots of Love,
Liz

Anonymous said...

Your little man is a fighter; all of you are. And there are so many people fighting for him right along with you. Continued prayers for your family; we're with you!
God Bless,
Amy
(ladygil)

Anonymous said...

Lots of prayers for you and your family.

Blythe
bdciml

Anonymous said...

I just found your blog today, thanks to Nestie smallbutfeisty. Your family will be in my prayers

Jenna said...

If ever I prayed for a miracle before, it was nothing compared to how hard I am praying for your family right now. There are no words to be said, no comfort to really be given, but just know that prayers and tears are being sent to Heaven right now for your little guy.

Jenna
(Bumbledees)

Anonymous said...

Megan, I am so sorry for everything you all are going through. You and PJ and Charlotte and Katie and Jack will all continue to be in my prayers. As for knowing what to pray for...don't worry, God knows what each one of you needs, even if you aren't sure anymore. Please know that there is a whole troop out there praying hard for all of you. take care. Katherine (htw)

FINGERBANG said...

I will pray for you and your family.

Anonymous said...

megan your family is in my prayers everyday!

Anonymous said...

Megan, I am so sorry. You and your family will continue to be in my prayers. I am wishing you strength and sending you all the good vibes in the world.

Lauren (lpwish)

Anonymous said...

My heart is breaing for you. I have been praying for all of you all along but I want you to know that I am going to double my prayers. You are so strong and I admire your courage.

Anonymous said...

Megan - My heart is breaking for you. I am so sorry - I will continue praying for you all!
Kristen (daisynj)

So said...

I am so sorry. You are all in my prayers.

Anonymous said...

Endless prayers for all of you. -Diana

Anonymous said...

Megan, There are no words to convey the sadness I felt when I read the update today. My heart breaks for you and PJ. I am so sorry that your family is going through this. Many prayers and love is being sent your way!

Cammy said...

Megan -- I cannot begin to imagine what you and PJ are feeling. I hope that in the "season of miracles" you will find the miracle your family so needs.

momofdom said...

Megan,

I'm so sorry. Right now I'm praying for a Christmas miracle.

((HUGS))

Jenn(jenga)

Robyn said...

I was directed here from a post on the Nest. Just wanted to let you know I will be continuing to think of the 5 of you, especially baby Jack.

Robyn (robynscott)

The Alpha Team said...

I stumbled upon your blog after visiting the nest baby. I can't offer any more advice than you've already received but I give you and your family my deepest sympathy. I am a new mother as well and I know that motherhood gives you a strength that you never knew you possessed and I have to say that the fact that you can even write about this proves you are infinitely strong at heart. I am praying for you and baby Jack. I know there are several ways to look at the situation, but I am believing that he will pull through this. Hang in there. You are in my thoughts.

Kate said...

I am praying for you and your family.
Kate

Anonymous said...

These words are little consolation, but I will continue to pray for your family.

-Olderwiserbride
Carol

LilOlMrsG said...

My heart aches for your family Megan and PJ. I keep your sweet babies in my daily thoughts and prayers, and am praying for a miracle. (((((((((((HUGS)))))))))))

Anonymous said...

You and your three beautiful children will be in all my prayers and a special prayers will be said in Jack's honor.

Anonymous said...

My heart is breaking for you and your family right now. I'm saying prayers for Jack and Katie.

Lisa (denvergrl)

Nancy said...

Megan I don't know what to say. I'm praying so hard for a miracle for all of you.....

Nancy

everyone said...

I'm praying for you too. & sometimes God really does answer your prayers in the way that you actually want them answered. SO here's hoping for that.

Lots & LOTS & lots of hugs (& some kisses for those adorable babies)

a fellow new mom

Anonymous said...

Oh Megan, I can't tell you enough how much you've all been in my thoughts and prayers. I am so sorry that all you seem to get lately is bad news, but please know that we are ALL pulling for you and especially for Jack. I wish there was something more I could do or say, but please know you are surrounded with love all around.

Linda

The DiBiasi's said...

Megan, PJ and family,
There are no words. We will and CONTINUE to pray for Jack and your family. ((((hugs)))

Anonymous said...

My heart goes out to you and your family!
You and your family are in my thoughts!!
xoxoxo!

Harris Boys said...

I've learned of your family through the nest-multiple board. I have twin boys and I can't even begin to imagine what your family is going through. I'm keeping Jack and your baby girls in my prayers. Here's hoping that mircales happen. Stay Strong!

Erica said...

Oh Megan, I am in tears for you.. I am praying deep deep prayers tonight for your baby Jack... my heart is in pieces... I am so sorry...

**hugs**

Anonymous said...

you and your family are in my thoughts and prayers--we are all pulling for you, pj, the girls, and jack!

mrs.jen&dave

Anonymous said...

Thinking of you and your family.

Colleen (collrob)

Anonymous said...

As I sit here with tears streaming down my face I realize I have no words to say to you. I can only offer you, PJ and your beautiful children my prayers.

Baby Jack- Do you see how many people are praying for you? Give the Big Guy some peace and pull through!

The Murray Crew said...

Megan, although we've never met and probably never will, my heart has ached for you all day....I keep seeing sweet Jack's face - he is such a beautiful baby boy - amazing eyes and he seems so alive. Even on the vent he seems just so comfortable in your arms....I really think Jack's a fighter (he's never givin' up on us yet)....I'm praying for a miracle in this season of miracles. I have 4 of my own and my heart hopes and prays for you to have 3 in your home....

Shannon said...

Megan,

I'm so sorry. You and your family are in my prayers.

Shannon
Irishblessing

Freya said...

You and your entire family, especially your three beautiful babies, have been and continue to be in my thoughts.

Anonymous said...

Megan - Jack, Katie, Charlotte, you, and PJ are in my prayers every day. ((((HUGS))))))

Suzanne (suz5425)

Carmen said...

I'm in California and found out about this as some posted it on the Nor Car board. I just want you to know that my husband and I are praying for you and your family. We are praying for your little ones - may God be with you through this difficult time and may he put his healing hand over your children and bless their little hearts.

Heather said...

Megan,
I just wanted to let you know that everybody I know Is praying for you, pj , the girls & Jack! My Hometown Church is going to Say a Praer during Mass this Sunday. I wish i Could be there to hear it But I will still be in California. Please let us know if you need anything.

Heather(hp093006(nestie from Nj & now in Cali)

Anonymous said...

I am praying for you and your family, and all families going through difficult times such as this. I was so very very sorry to read this post :(

-Beth, WA

Anonymous said...

Megan please know that there are many of us thinking about you and your family during this hsrd time. *hugs* to you.
whirlygal

cara said...

Megan
,
My prayers are with you and your family.

Cara

Sara said...

Prayers from another FL nestie.

Anonymous said...

Megan,
I am so sorry you are going through this. All of you are in our prayers and thoughts. Sending big hugs to you and Jack.
Nicole (mikeandnicole05)

Gabbs said...

Megan,
I am so sorry to hear about this. Please know that Ed, Stephanie and I are all praying for you and thinking of you during this difficult time.

Melanie said...

Adding even more thoughts and hopes for the best to the family. So many people are pulling for all five of you. --Melanie (melaniekt)

jimmtsgirl82005 said...

I am praying for your family. Stay strong. Jaime (jimmysgirl82005)

MonaLisa 71 said...

Jack sounds like a true big brother! He has made the ultimate sacrifice of putting the health of his sisters ahead of his own. Imagine him in the womb looking out to make sure they got their nutrients first. I hope and pray to God that he pulls through this. He sounds like the ultimate trooper and in such small form, he is oh so admirable. He is a hero in his own right at such a young age. We all have a lot to learn from Jack - hang in there and don't give up! I love the little guy without even knowing him. There must be hope. Please, don't stop allowing yourself to be hopeful. Jack feels that. He knows you love him. He knows you want to bring him home. He's fighting because of the energy you are putting out to him. Miracles happen everyday. People who shouldn't be alive pull through. Those who were told they'd never walk again are running marathons. What gets them to that place? It's not luck. It's a miracle. Quality of Life goes such a long way. As hard as it must be, don't let Jack feel your sadness, grief, or worry. It may sound nuts - that's my attempt at a contribution for advice to you. I am no expert and I don't claim to be. I am just a mom whose heart is breaking as I read your family's story. I send all my love, support, and encouragement to you and your family and especially Jack.

Heather (from the nest)sisterfriend.... said...

We will continue to keep your family in our prayers! It breaks my heart that this was not good news. ((HUGS))

Kelly said...

Oh Megan. I don't even know what to say. I wish there were some way I could comfort you, but I know no way exists. I'm prayer harder than I have ever prayed in my life for your family.

Anonymous said...

I am so sorry Megan. My heart goes out to you. As always, you, PJ, Katie, Charlotte, Jack and the rest of your families are in my thoughts and prayers.

Michelle

TeagynsAuntie said...

My Niece was born with a congenital muscle disorder (d-bi functional protein decency), she was on a vent at birth for 34 days. They told us she would never come off, we never gave up hope. Babies with the condition my niece had usually don't live passed a year. My niece lived a good life, full of love, fun, and adventure until she was 4 yrs 2 months old. Never give up hope. Dr's have to paint the worst case scenario. If you wish to talk with a family who has "been there" please feel free to email me at LuvMyNieces00@aol.com.

From the pictures you have posted of your son, he does not "fit the picture" of a baby with a muscle disorder.

Take care of yourself, and your sweet babies. I will be praying for little Jack, as well as your girls.

SassyLassy said...

I am so sorry for all of this and all of your pain. Jack looks so beautiful in your arms and I am sure he feels safe there. I will say many prayers for you and your entire family!

{{{{HUGS}}}}}

Beth (NH Nestie)

Maria said...

I am so sorry to hear your story. It did bring tears to my eyes. Your family will absolutely be included in my prayers.

ghl said...

Megan, My heart goes out to you and your family. Please know all of you are in my thoughts and that we are praying for you. I hope all three of your precious little babies will get through this. *hugs*
-Gigi

Bella Scoperta said...

Megan,
PLEASE READ THIS!
I was on the Knot.com back in 06 when I got married and was passed along your story. I wanted to let you know that I was born in 1979 with the same condition as Katie - infact I was born with more issues than her. I am very healthy, happy and married! Your baby will get through this. PLEASE contact me so I can give you more details - even the hospital I got my open heart surgery from and support groups. I could list it all here, but I rather do it via a personal email or phone call.

allthatvelma@yahoo.com

-Jaimie

Anonymous said...

All I can offer are prayers for strength, guidance and comfort to you and your family.

Hekateris said...

I...don't even know what to say. My heart breaks for you and your husband.

Amanda & Brian said...

I don't know you, but I had triplets on 9/19/07. Our smallest got an infection and we had to make the decision to take him off the vent and let him go after considering the quality of life he'd have. I understand exactly what you're feeling and it's the worst thing ever. I still haven't learned how to deal with it, but I'm happy to 'talk' if you ever want - amandayussman@aol.com.

Linda said...

Continued prayers coming to you and your family

Hilary said...

I linked to this blog from a post on The Nest. For the past hour I have read every post you have written. I sit here in tears with your latest entry. Please know that I will be praying for Jack and the rest of your family.

Amanda said...

My heart goes out to you and your family. I wish you all strength, health, and faith to get through this trying time.

Erin said...

Megan, you and your family are at the top of my prayers every day. Thinking of you and sending endless strength, hope, and peace to you, PJ, the girls, and Jack. Please take care of yourself.

Alyson said...

Megan, my most positive thoughts are with you now and always. {{{hugs}}} Mrs.Aly&Mr.Jim

Karen & triplets said...

I just found your blog and am so glad I did. As hard as it is, try to remember, God is a God of MIRACLES!!! He can do ANYTHING! So I will be praying for divine intervention and a MIRACLE for your little boy! Just keep focusing on him growing, happy, healthy...and what a TESTIMONY he will have to share! Your whole family is in our prayers!

Karen & family

Kelly said...

I am a nestie and saw a post about your situation on the preemie board. I am so sorry that you are going through this. My prayers are with you and your family, especially Jack.
Kelly
Mom to a 26 weeker

Carolyn said...

From another triplet mom, I am sending you hugs and many, many prayers for you and your beautiful family.

My name is Tammie said...

I just found your blog through the Triplet Connection and my heart breaks for you. Poor sweet little Jack. I also have a little Jack, and I can not imagine my life without him.

If you would like I can link you on my blog for prayer requests. I also have a group of very supportive friends that would love to pray/send positive thoughts for you and Jack. I wont do anything if I dont hear from you because I dont want to offend you, but gosh I wish there was something I could do.

You will be in my thoughts.

Anonymous said...

Megan- My heart breaks as I just read your latest update. We don't 'know' each other but I feel like I have known you since the knot days. I've since moved but have been following your story. I will keep you and your beautiful family in my thoughts and I hope that you all keep fighting and never lose hope.
Karen

Anonymous said...

I found your blog through triplet connection. I am so, so sorry for what you are going through. No parent should have to experience that pain. I will say a novena for you and your sweet Jack. I hope you are able to find some peace.

Anonymous said...

Megan -- I haven't posted before, but I've been praying, and will continue to pray, for Jack and your whole family.
Natalie(c99)

Lotta said...

Oh my goodness. First of all, your baby guy is beautiful. Just look into those eyes - what a soul!

I will absolutely pray for you. But also pray that you and your husband know that you have given your baby a beautiful home (your belly) and beautiful love. And that's all a person can do.

You guys are amazing.

Anonymous said...

My husband and I pray for you and PJ and your beautiful children. I wish you all strength, health and positive vibes.
xoxo
Kim

Anonymous said...

Megan! You and PJ are some of the strongest people I have met. You and your family can beat this. Belive me in my profession children on a vent can BEAT whatever is in front of them. PLEASE e-mail me. pigglet46@yahoo.com I see kids that have muscular disorders all the time and they DO LIVE AND HAVE FUN LIVES. Please don't give up, don't let the dr. scare you. Just keep believing and holding onto the dream of having Jack home with his sisters. Because even if he is on a vent he CAN GO HOME. Please e-mail me. I would love to try and hook you up with other parents of children in these type of situations!! Your doing a great job and I will continue to prya for your miracle.
Amy (zorahangels)

Anonymous said...

Hi Megan,
I found your blog via the Triplet Connection and I was up until 4am this morning reading all your entries. My heart is so heavy hearing about the struggles you have had with Jack. What a beautiful baby he is and what a sweet face. I will pray that the doctors get the answers that they need to help him come off the vent and have him home in your arms where he belongs.
I really enjoyed reading your blog and could relate to alot of what you had to say about being pregnant with triplets. I too am a triplet mom with a son who is also named Jack.
I will continue to pray for your family and especially pray for Jack and his health. I hope you get the answers you need and the strength to get you through this difficult time.

Shelly

Millicent said...

I am praying for a miracle for Jack...

Sarah Furlough said...

I stumbled across your blog, and I just wanted to tell you how much my heart is aching for you.

I am the mother of twin boys, born very prematurely in December of 2005. We lost Logan after 5 months, but his twin Cooper is almost 2 and thriving.

I will keep you in my prayers. I hope will all my heart that the doctors can find some answers, and that you will be able to bring Jack home. He is just darling. What a precious little boy.

Don't ever give up on your sweet Jack. He has proven to be a fighter!

Kat said...

Megan and family, Your blog entry has moved me. What a lucky little baby Jack is to have such a wonderful family who loves him so much. He can feel it! You can see how comfortable he is in the pictures. I pray for your family, and I pray for guidance with many decisions in the next few weeks.
-Kat

Jonathan, Andrea and Luke said...

Dear mother,
You don't know me but I've lived in your shoes. I was forwarded your blog from another dear friend. Yes, your child can come home on a vent. Yes, you can take care of a child on a vent and yes,...God will provide.
My child was in the same boat, vent and all--undiagnosed for 18mths and all. Floppiness and all. Therapy and all. I'm here to tell you as a witness that you can take a child home on the vent. God created vents, he created meds, surgeons that close up PDA holes, feeding tubes through belly's, nissans, and medical equipment. He is in all and over all.
Trust me...tell the Dr's you are not a mother/or father that will "Be God". You will be a mother that will use what God has provided to take care of a child that God created. Do all that you can to get that child home and use the equipment to do it.
I pray you get this.
my family blog: scroll down on the side bar to Luke's story. It's a video montage.
www.andjonbabyluke.blogspot.com
my son's blog:
www.cmsluke.blogspot.com

To one mother who has lived and breathed your thoughts on this blog. YOU ARE NOT ALONE-
Andrea Hughes (mom to Luke Hughes)

Anonymous said...

I stumbled on your blog, and I just wanted to let you know that I am praying for you. I am a student at Vanderbilt and I am planning to go into neonatology. I pray daily for babies in the neonatal units and their families.

Dyana said...

Your strength is inspiring. My thoughts are with you and your family.

mikeandmcgee said...

Texas nestie here with many prayers for you, your husband and your three sweet little babies.

I know many people with heart conditions like Katie's who've come through surgery with no complications and gone on to live normal lives. I pray that you receive answers soon about Jack's condition and that he is able to be reunited with his sisters soon.

Anonymous said...

Megan,

My heart breaks for you. I'm praying for a Christmas miracle for you and your darling family. Stay strong and may God watch over you.

Take care,
Sandy (sandykins)

Jackie said...

HI Megan,
Again, I just want to leave you a little note to let you know that yes, another person is praying and thinking of you and your family. I hope with all of my heart that everyone is healthy, home, and together. And most of all, I hope for peace and serenity for you.
Lots of hugs
Jackie (bbzangel70j)

Jackie said...

HI Megan,
Again, I just want to leave you a little note to let you know that yes, another person is praying and thinking of you and your family. I hope with all of my heart that everyone is healthy, home, and together. And most of all, I hope for peace and serenity for you.
Lots of hugs
Jackie (bbzangel70j)

Anonymous said...

Megan,
I'm so sorry that you and your family are going through this. I continue to think of and pray for all of you, everday.
Lisa (knittygrl)

Natalie said...

Megan, I'm so sorry to read what you're going through right now with Baby Jack and now with Katie. My heart just goes out to you and your family. Your story is reaching many places right now, and many prayers are being offered up for your family. May God give you the strength you need and the healing Jack and Katie needs.

Marie said...

megan-

my heart goes out to you and your family. i will continue to think very strong thoughts for little jack and the rest of the family.

i wish there was something i could do.

hugs

Searching said...

What a beautiful baby. I'm so, so sorry for all you are going through. It's so difficult when they look "okay." I'm a NICU RN and want you to know that even if treatment is stopped, we do all we can to make sure the baby is comfortable and as pain free as possible. The baby is our top priority. It absolutely tears me up when that is the best answer for the child. It's not fair and I'm so sorry you might be in this position. And please know that his little life would never be written off, that the nurses would love him and care for him to his last breath. I will pray hard that you never need to know this for your son. Your entire family and all the caregivers for your baby are in my prayers.

Anonymous said...

My thoughts are with you and your family.

Anonymous said...

Megan and PJ-
you don't know me, but I got to your blog through triplet connection...I am both a triplet mom (5 years old)and a mother of a 10 year old with special needs. While my son is not vented, I do want to say that kids can and do live full lives on vents. Don't let the hospital tell you that you have to let Jack go b/c he might need a vent long term-the pictures of him are beautiful, and he looks like such a strong, alert, aware little guy. Stay strong, and follow your heart.
-Sara Porush sporush4@aol.com
PS If you'd like I can help you get in touch with some other moms.

Alicia said...

Megan,

Your entire family continues to be in my thoughts and prayers. I hope you get some answers soon and that Jack comes home to be with his sisters where he belongs. You are all an inspiration.

Anonymous said...

My thoughts and prayers are with you and your family. A fellow Nestie, peanut1334

dale594 said...

Megan, I cried when I read this latest about Jack. I am a sometime NJ nestie who has been keeping up with your blog and I am praying for all of you all the time. The babies are so lucky to have you and your husband and I know you all feel all of us out here supporting you and sending prayers and positive thoughts and just imagining a healing white light around little Jack especially. Take care. Dale

Anonymous said...

I dont know you or your family as I am usually not on the nest, but someone posted this on the CT knot board and I just want you to know that I will pray for you and your beautiful family and most especially for Jack.
Joyce

Anonymous said...

Just wanted you to know your babies and entire family are in our prayers. May God's hands be upon your family.

Karen