Sunday, January 20, 2008

Heart and Help

We took Katie to see her heart doctor on Friday, and.... get ready.... the news was not terrible!! It might even be considered kind of GOOD. We didn't see that coming. Actually we did, because I knew, Jack would watch out for her. She has a guardian angel now, and so does Charlotte.

Basically, Katie's heart looks the same, it's not enlarged or working too hard, and she's gaining weight and doing well, so he said to go home and come back in 6 weeks and he'll look again. She definitely is going to have to have something done, the balloon catheterization at least, but the bigger she is the better. And he said there is a chance that the valve that is too narrow could grow and widen as she grows which would be awesome, since that is the one thing that's really concerning and can't necessarily be fixed with the catheterization.

He weighed Katie and she's 12lbs 1 oz!! Not sure what Charlotte's weight is, but I would guess about 11 lbs. My chubby girls.

(Charlotte first then Katie):



I've been trying to get out with them more. It helps being busy, and out of the house. Here they are on Thursday before our big trip to Short Hills Mall for lunch with our friend Melissa. The girls were really good. They're definitely my daughters.... great at shopping already!



But, Charlotte was REALLY constipated all week, we'd been trying everything to get her to poop, pear juice, taking her temp rectally, even a suppository, and nothing. Where does she FINALLY decide to go? The mall of course, right in the middle of Pottery Barn Kids. Oh well.

I wanted to mention about the fund we set up for Jack. This is NOT a solicitation for money, more for ideas. When Jack died we knew we wanted to ask for donations in lieu of flowers, but couldn't decide on where to donate to. There are lots of great organizations we tossed around, St. Judes, Make A Wish, even CHoP and St. Barnabas, but I really wanted the money to go to a specific child or family. I wanted there to be a child who knew that because of Jack, their life was maybe a little bit better. So we decided to set up this fund (all the money goes to our lawyer who keeps it in a non-interest bearing account until we decide what to do with it).

That is my dilemma though - what to do with it. We really want to keep it going by having fundraisers every year. My dad organizes golf tours and said he could set up a golf tournament for us, and we are thinking of maybe doing a firefighter softball game or something along those lines. BUT where to give the money?

It doesn't always have to be to the same thing. We've talked about sending a child to camp this summer, or contacting CHoP to see if they have a family with a specific need. It could be something as simple as a child who's family can't afford a bed for them, or school supplies, or Christmas presents. I really just don't know. I feel like Jack did so much GOOD in his short life, and I don't want that to end. I want that feeling of love, and gratefulness and kindness that he brought out in everyone to go on and on. That God sent me Jack for that reason, to make me help other people the way he helped so many. My whole life I've felt kind of purposeless, I never had a job I loved, I never had a 'calling' to much of anything. This is my calling.

I want it to be the right thing we do with this money. I want to be able to tell the children it goes to, there was once a baby named Jack who was so loved, and changed the world, and he's changed your life too.

So if you know of anyone, anything, have any ideas, please share them with me. This is my mission right now. This is what is helping me get through, knowing we will keep Jack's memory alive. I need to find the right way to do it.

49 comments:

Darreth Renelle said...

I've been reading your blog for some time now and I wanted you to know that I think this is the neatest thing. I don't have any ideas (sorry) but I wanted you to know 1) how sorry I am for your loss and 2) how amazing you are for doing this for Jack. He is a beautiful baby and his story really stirred me. Good luck with choosing what you will do.

Sarah said...

I think what you are doing is a fabulous idea. I don't know of any children right now, but I will be sure to let you know if I hear of someone in need. I'm so glad that you have found a way for Jack to continue to touch peoples lives.

Just remember God has brought you to it and he will bring you through it, keep up the faith.

Sommer said...

what a wonderful entry! What great news about Katie too! 12 pounds?! :) its amazing how fast they grow!

Glad you are doing a little better and getting out.

I think its a wonderful idea, the idea of keeping Jacks spirit alive. i love the idea of giving to a family at CHoP. And i really cant think of better way, to keep all the things Jack taught us, going and going!

The Murray Crew said...

Megan - The girls are doing fabulous - the chunk looks great on them! =) Hey, I'm not sure if you have ever checked out our site, but I'm starting a NICU Survival Kit project (it's in the preemie stages) - I fill a box with things that help you through the NICU stay journal, disposable camera (for while you're away for the nurses), book, preemie blanket, snacks, etc. There's more about it on our blog. It's been our "outlet" after our NICU experience.
I think the fund is an excellent way of honoring Jack's precious life.
Blessings,
Jen (Quad Mama to Henry, Isaac, Brooks, and Clark born at 32 weeks)

The Murray Crew said...

PS You always have THE cutest clothes! Someone is going to get some great hand-me-downs from you someday!

so tired said...

I agree with "the murray crew". As I was reading your post I was thinking that you know what other families in your situation need. The money could go towards helping out the parents or siblings of other preemies. That must be such a tough time when you are home but your preemie is not.

There must have been things you came across during that time that you thought "wouldn't it be nice if....." Or "this would be a little easier if..." Something that could ease other families in that situation. Maybe even helping with burial costs of infants that don't make it but the parents are short of money.

Just a few ideas off the top of my head.

momofdom said...

As you said, you feel like this is your calling, or purpose, I think what you do with the funds will just click for you one day. You seem to have some great ideas already, I bet at some point something will stand out and you'll get a sign that says which cause is the right thing.

Hugs! You sound so positive and strong! I bet you're making Jack so proud!

Rachel said...

Just an idea, What if you used some of the funds to help a special needs child get adopted...maybe the money could help with the cost of the adoption or something. Every child deserves a loving home..unfortunately some women choose to give up thier baby when they find out something is wrong with him/her...and alot of these children have a hard time getting adopted.

Noah&Zach'sMom said...

What a wonderful idea! I'm sure that Jack is so proud of you. What about building a playground near your home and naming it after Jack? You could bring the girls there, tell them about their brother and the tremendous amount of good he did in his short life. Just a thought...

carmeng said...

WOW Megan, you are amazing! I like the ideas of the $ going towards special needs children. Some families cannot afford wheelchairs and other items for their children. This could be a great help!!

May God continue to give you strength.

PS. You're girls are BEAUTIFUL!

Millicent said...

I have been checking on your blog daily and lighting candles for you and Jack. He most certainly has affected my life. I have an idea, but don't know if you will like it. It is something I heard about recently. Its called bereavement photography. Basically photographers give their time to photograph babies and children that are dying so their parents have something other than memories. I don't know if they do that at the ChoP. But maybe the fund could help set something like that up? I just thought it was a wonderful idea. Here is a link for you to check out. Hope it is not too painful. But I felt I should put the idea out there....
www.nowilaymedowntosleep.org

Millicent said...

I just wanted to add what awesome news about Katie! I am also keeping her in my prayers. I really hope things improve as she gets bigger and she only has to have the one procedure. As for the pooping problems, just put them in a cute outfit and take them somewhere and they will poop. I am convinced after 4 kids.

Jessica said...

Megan, I think a yearly fundraiser is great. I think maybe a mini marathon in your town would be great, something to do with firefighters would also get people to really participate and donate. And you ALWAYS have us Nesties to kickstart the fundraiser, you know a few of us are pretty good at that, lol! ;) I am so glad the girls are thriving--they are beautiful! Let's get together soon! I am going to email you now!!

Melissa said...

I had so much fun with the girls on their first shopping trip! We'll have to do it again soon...

GREAT news about Katie. What a relief.

As for the fundraisers, I think whatever you decide, wherever the money goes, however it gets distributed...will be wonderful. The bottom line is it will help SOMEONE, SOMEWHERE...and all because of beautiful Jack. He is always in our thoughts.

heeda said...

The girls are beautiful! I'm so glad that you got good news about Katie.

I think that an annual fundraiser is a great idea!

Anonymous said...

Megan,
I think a yearly fundraiser would be excellent. SO many people would attend - I know it! I am so happy to hear the good news about Katie! Those girls are beautiful :) Watch out Short Hills Mall - here comes the DIVAS! :)

Jessica
(Dibsgirl)

Kristen(kristen81603) said...

Megan,
your strength and words move me everytime! You are amazing!
I am so happy to hear the news about Katie! GO GIRLS!
As for Ideas for the fund for Jack- My mom is a social worker for Tomorrows Children in Hackensack and every so often comes across a family that has nothing due to the illness of the child. I could hook you up with her and then you can decide if there is ever a family that you wanted to work with- Many times it is for the most basic things that they need, rent, transportation back and forth to the hospital etc-
Let me know- you can always get me at kristen2276@ aol

Crystal said...

I think your idea is wonderful. I am sure this will touch lots of people's lives. Something will come up and you will know what to do with the money when the time is right.

Sarah said...

That is such great news about Katie! You might consider this group called Heartworks. I heard about them through a family member who through a coworker found out about one of the families that Heartworks is helping. Here is their website - it seems right along the lines of what you are looking to do.

http://njheartworks.org/

Anonymous said...

I'm so glad to hear the girls are doing so well Megan. 12 pounds, wow! They really are cute. I'm glad to hear you're getting out with them more too.
Linda

Sandy said...

Megan so happy to hear the news about the girls. Wow 12 lbs that's fantastic. I don't really have an idea for Jacks fund, but i think it's a great idea to do something that will make people remember Jack always. He's opened so many hearts and Soul and i'm sure he will continue.

Joanne said...

How about the March of Dimes? When my niece passed away I was on my honeymoon and felt like I needed to do something for her and in her name. So I organized a team and we walked for the March of Dimes and raised about $1700.00 Maybe you can contact someone there and they can guide you. Also, after my cousin passed away my aunt and uncle set up a scholarship fund and every year they give money to seniors from his high school and to 8th graders from his grammar school. A softball fundraiser is a great idea, as is the golf tournament. WE have done them for my cousin's scholarship fund. If you need any help, I would love to so page me on the nest. Take care Megan, glad things are starting to look up for you guys!
Joanne

Anonymous said...

I think it's awesome that you want to give back AKA have a purpose! When my neice was tragically killed at 18, we took the interest made from the donations and gave away scholarships each year to students in need. This has helped my sister so much, knowing that Libby is still giving to her community!

candace said...

I have been reading your blog and praying for you and your family during this time. i am mom and cannot begin to know what you are going through. I have an idea you could put the money toward research on finding a cure for Jack's diagnoses. I know it is not one specific family but maybe if they find a cure one less family would not have to go through what you are going through right now.

tbonegrl said...

I am so happy to hear about the better news for Katie!

I love the idea of a playgound because of its permanance, KWIM? We have an organization that works through our NICUs, touching little lives, and they make the blankets and hats/booties for babies in the NICU for their isolettes. They also help poor families with baby supplies.

Anonymous said...

I don't know if this is something you would be interested in, but I read an article in People about teenagers in NJ who have been in foster care their whole lives. It really made me think. The website is heartgallerynj.org if you want to check it out.

Thank you for sharing Jack with us all. I am really glad that you got a good report from the doctors and that Jack is looking out for his sisters :)

Anonymous said...

Megan I think that when the "right" thing comes along, you will know it in your heart. Don't worry, I am sure Jack will guide you to it. Trust your instincts - there is nothing more powerful than mommy instincts.

Yay for the girls trip to Short Hills Mall! Its good to make sure they get started right in their young shopping life so far!! And it's very important to get out as much as you can.

Natalie
(natalie042205)

Anonymous said...

I am so happy that for this moment life has brought you some peace. My thoughts continue to be with you and your beautiful family.
CT Knottie, Jenn

Anonymous said...

I think God has told you what to do...give it those children and families that are less fortunate...
you can do that through St. Jude, The Ronald McDonald House, etc...each year a different charity...
I am so glad that you have continued to BLOG...you are an amazing writer and I think you should write the story of Jack...it will help you and so many others by just reading your story....
God Bless you and I am truly sorry for your loss...

Anonymous said...

Dear Jackson's Mommy and Daddy,
I have been reading your blog for quite some time now. I just wanted to offer you a way that you might consider using the Jackson Milan Fund. I am a prayer warrior from
Asher and ^Jacob's^ friends. There are alot of family's that have to drive a good distance to get their child/children to the hospital that they are being treated at. I've read many a families websites that could really use some extra help for different reasons. I'm not sure if this would be anything you would be interested in doing, but I hope you might consider my suggetion . Thank you for your time.
GOD BLESS!
Sincerely,
Rebecca

dinkey said...

HI Megan...I think the girls look beautiful and I love the idea of a special fund in Jack's memory. I am sure whatever you decide will be wonderful. Jack is an angel and watching over all of you know. Glad you are getting out. Those poops in the mall are always fun!! As always thinking of you and your family and praying for all of you:)

sebski said...

hi! i'm a new poster to your blog... found it by way of the nest. i want to offer my condolences on your loss of little jack. you're such a strong woman and mother!!!

i'm a mom of identical twin girls myself and live in the short hills area... have you checked out the Moms of Multiples in Essex County group yet? it's run out of st. barns and there's a yahoo group too. it's a wonderful way to meet other MoM's in this area for playdates and such to help keep busy... check it out! :o)

lauren
xoxo

Kandas (Caelenesq from the Knot/Nest) said...

I'm glad to hear that the girls are growing like weeds!

How about the Victory Junction Gang Camp in NC?
http://www.victoryjunction.org/

Their mission statement: The Victory Junction Gang Camp enriches the lives of children with chronic medical conditions or serious illnesses by providing life-changing camping experiences that are exciting, fun, and empowering, in a safe and medically sound environment.

It's a really neat place run by the Petty's (Kyle & Pattie) in honor of their son, Adam. Because of donation, the camp is free to the kids. Most of these kids wouldn't be able to go to camp because of their medical conditions but this place is made just for them.

Anonymous said...

How about giving money yearly to a child who has the condition that Jack was born with? I'm sure there's some kind of network/support group that you can work through.

Rebecca Nixie, RN said...

I just finished reading your story this past weekend (found the link on a previous patients blog site). What a touching story, my 5 year old asked me why I was crying. Sorry for your loss of Jack but congratulations on all three babies. Those girls are absolutely beautiful!!! I don't have any ideas specifically, but do like the idea of giving to a family of CHoP, either to help pay for medical expenses or to help the family with things they may need while a NICU family. I'm sure you will find the perfect way to keep Jack's spirit alive!! Best of luck to you and you family.

Rebecca Nixie, RN @ Frederick S. Eadie Birthing Center, Backus Hospital, Norwich CT

Undomestic Goddess said...

I ahev been reading your blog for a few weeks now , and I think it would be great if you could put together some sort of Gas or Hotel gift cards for parents who are traveling to and from the hospital ( much like you did). This is always helpful and it would help take care of that extra worry of trying to find the funds to be with your baby at such a hard time. Take Care

Tori

maureen said...

hi megan....i may have an idea for the funds you have raised for jack...if you are interested, please email me at marvek2@aol.com
i would love to talk to you...
you dont know me but my friend told me about your little ones and i have been following your blogs....i am so sorry about jack and i wanted you to know that his story has touched people you have never heard of...thanks....

Not in the Water said...

Megan -

I live in the nearby area and deal with children and charities. Please email me and maybe I can guide you for your donations.

notintheh2o at yahoo dot com

the only # in the email is the 2

Patyrish said...

The girls are SO gorgeous! They are growing like weeds! GREAT news on Katie's heart. I am glad they are able to put things off for a while because she is doing so well!

Good to hear Charlotte christened the Pottery Barn. When ya gotta go...ya gotta go right?

I think the foundation you are starting for Jack is a wonderful idea. His memory will live on forever.

Anonymous said...

I've also been reading your blog for some time now and have been so affected by your family's story. I am so glad to hear that your little girls are doing well and especially that you had good news about Katie! It is about time you had some good news.

I think your idea about Jack's fund is wonderful, and I've seen some great suggestions by others here already.

I also wanted to let you know how your baby Jack has inspired my family. I shared your story with my 10 year old son, and we talked about how those gifts from Santa meant so much to Jack (and to you). My son suggested we take up a collection of toys to bring to kids and babies at a nearby hospital. He's already used some gift cards and his piggy bank to get some new toys, and we've been appealing to our friends and family for more new toys and books and such. Even though people may be 'gifted out' from the holidays, we know people are also cleaning house and may have some new toys or books (or ones they planned to exchange after the holidays) they may be happy to donate. We're hoping to get 40 toys/books for this one hospital to start, and we're more than half way there already - and from the e-mails I've received I'm sure we'll reach that goal soon. My son also said, "Why wait until Christmas? We should do it on a regular day, or on a lame holiday like Valentine's Day." (To a 10 year old, any holiday without presents is lame...)

So...we're hoping to reach that goal within the next few weeks. I will post again when we get there.

All in Jack's memory...and all because of what you and Jack have inspired in us.

Jennifer

casieleigh@yahoo.com said...

I have posted before and have been following your story from the nest. I also have a "Baby Jack" who is 7m old and so I'm connected in another way because our boys share a name.

I am a kindergarten teacher and I have one idea for you. A good way to directly give to those in need is to contact an elementary school in your area. We had a church contact our school before Christmas simply offering to buy Winter coats for those kids who need them. Teachers ALWAYS know which children need a coat, clothes, shoes, etc. We turned the names and sizes into our counselors who gave those to the church. A week later, coats were delivered to school. I just loved the simplicity of it all. It's not too complicated and honestly the teachers of children usually know what children need if they aren't being provided for in an appropriate way. I only had one child in my class who was in desperate need of a coat and she LOVED LOVED LOVED her teal Winter coat with fur-trimmed hood and wears it every day. You should see how proud she is of her coat. . .simply heartwarming. As far as connecting Jack's name to this, you could sew or iron on a patch to the coats that says something cute like "Jack's Jack-ets" or something cute. Just an idea. . . Email me if you'd like. Still praying for you and kissing my Jack extra every day because I'm so appreciative for what I have.

Casie

Future Sgts Wife said...

Your blog continues to be such an inspiration to so many. The girls are getting so bit already, and with Jack watching over them, they'll do great things! We donate often to a program called The Gift of Life - which helps families of transplant recipients (my sister had a heart transplant and I've had a cornea transplant). You're doing such a wonderful thing. Thank you for reminding us what truly matters in life.
Lisa

Brian & Debbie said...

That's great news about Katie! Jack would want you to get out and have fun with those girls!

I crack up every time I see a picture of that boppy. My daughter sleeps in the same one ;-)

Maybe you and PJ can find (I have no idea how) a child of a fire fighter that needs help. Or a family of multiples.

Annie said...

Charlotte and Katie are beautiful!

I'm so glad you got some good news. You deserve a little bit here and there.

I also love the idea of the charity, keeping Jack's spirit going--what a beautiful thing to come from something very sad. You will bring a lot of happiness and hope to someone else, and that is an amazing thing.

Anonymous said...

I love reading your blog. You are so lucky to be blessed with children. I loved the idea of a playground. In our town, a young boy died after a battle with Leukemia. He told his mom that he would get red wings when he went to Heaven. When he passed, they built a wonderful playground with the help of tons of people and businesses in the community. It's called Ben's Red Swings. It's located right outside of our small zoo next to the park. It's age appropriate for young toddlers up to older children. They even have a tiled wall around it with handpainted/fired tiles that children from all over the county painted. A local pottery place donated the tiles and firing. It's amazing. This website is a little outdated since the project is over, but here's the website.
www.redswings.org I also love the idea of having the money being donated and raised in his name, over and over for children that need it. You might want to call your local Department of Social Services. Many of their foster children move from home to home with their small amount of belongings in trash bags or have other needs. Good luck and I look forward to seeing how the money helps children and families.

Beth
beachie228@verizon.net

Anne said...

I've been a reader for some time now, and wanted to take a moment to thank you for sharing your life with us. The fund is a fantastic idea and I know you will help so many children in Jack's memory.

Thank you for being so honest, especially for your post about Grief. The post depicted Grief so well- and I'd explain more, but really all I need to say is thank you.

mikeandmcgee said...

I remember reading about a woman whose son died from cancer during childhood. She started a foundation that pays the bills for families who need to stay in the hospital with a seriously ill child. Sadly, not all parents are able to take paid leaves of absence from work when their children are hospitalized. Some lose their jobs, fall behind on their bills, and their finances spiral out of control at the same time they're dealing with their child's medical crisis. This woman works with families - I can't remember if it's just at the hospital where her son was treated or if she works with families nationwide - to get their bills paid so they don't fall into financial ruin or have to leave their children alone and sick.

Perhaps you could do something like that in Jack's memory to help families with children at CHoP or St. Barnabas.

Dawn said...

I think what you are doing is wonderful. To play off of Jack and the season, maybe a coat fund for kids less fortunate, it won't be a WORLD of a difference in one childs life, but will help a lot of children stay warm for the winter. Maybe even something that could be done annually if you raise enough. You can also use Jack's name:
J-Jack's
A-Awesome, Amazing, somthing like that
C-Coats for
K-Kids

Anonymous said...

This might be a bit different from what you want to do, but you could think about setting up a scholarship fund for students in nursing, pediatric medicine, or something along those lines.