21 March 2014

Paying it Forward

We are so grateful for the many people and groups who helped and supported us throughout Noah's life. We thought it would be fantastic to let people know how they can help these groups continue helping other kids and their families. Rather than having any donations made to our family we would LOVE to have time and resources go to the following places :)

If there is a Children's Hospital near you, please consider volunteering or donating in some way. We would love to hear about great things done in Noah's memory :) We were with him at Primary Children's Hospital, in the Infant Unit and PICU, for a month through December and January while they addressed his transient bowel obstructions and tried to figure out why he needed a small amount of oxygen.

Volunteer
Being in a Children's Hospital at all is stressful and difficult, but that is made a little easier thanks to volunteers. We constantly used the help of volunteers during our stay. If ever we weren't with Noah we arranged for volunteers to hold, play with and talk to him. Nurses can't constantly be with every patient so these volunteers are so needed and so appreciated. It was comforting to us to know he always had someone there when we couldn't be with him, and being the incredibly social little boy he is we knew it was what he needed to stay happy and healthy.

We also used the volunteers who are there to play with older siblings. There is a play room at Primary Children's that gave us so much relief. After the first two weeks of Noah's stay, Daniel had to start going back to work. During the day I was at the hospital alone with both kids and for most of Noah's procedures Aurelia wasn't able to tag along. I was able to take her to the play room, she was assigned her own volunteer play-buddy, and I could leave to go with Noah. I knew she was safe and having fun, and I was able to stay by Noah's side. Were it not for these volunteers I wouldn't have been able to be there holding his little hand through everything.

They decorated puppets, then put on a puppet show :)

There are so many ways to volunteer your time and energy to help children and families in Children's Hospitals, or in the Pediatric/NICU area of your hospital. You can make a call to or visit the website of yours to find the best way to help.

Donate
If you aren't able to volunteer time, please consider donating items for the kids and their families, or encouraging your workplace to make a donation of items. Being in the hospital over Christmas wasn't fun. We wanted to be home together as a family, in OUR home. We were split up because Aurelia was sick and couldn't come around Noah. Christmas is supposed to be spent in your own warm, thoroughly magical home, not in a hospital. Our hospital Christmas was made a little more Christmasy by local businesses donating a few gifts to all of the patients. We were even given a little gingerbread house to decorate :)

We didn't like bringing Noah's toys to the hospital, for fear of a Velveteen Rabbit type situation. Thankfully there was an entire room full top to bottom with toys. We were given constant access to tons of developmentally appropriate toys for Noah. Not only did we not have to worry about his own toys picking up something nasty from the hospital, but he always had something different to try out. Especially for the infant unit, where the toys are so important for their development, donated, easily cleaned toys are absolutely needed.

Playing with one of the Infant Unit toys. (December)

Hospital blankets are great and all but they're very utilitarian. We were thankful for all the home-made swaddle blankets, tied blankets, quilts and burp cloths that were donated to the hospital. At first we brought our own for him but we knew there was always the risk of those items being thrown into laundry, never to return. We were thankful to have normal baby things that didn't need to come from our home and that we didn't need to worry about keeping track of. Children's Hospitals always need blanket donations.

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NICU Common Bonds. They are a parent support group in the NICU both Noah and Aurelia spent time in. They brought around little baby gifts for us and helped connect us with another G-tube mom who helped put our fears at ease more than any doctor could. They help bring a little sense of normalcy to an abnormal situation. They help exhausted, stressed, frustrated NICU parents feel supported and part of a community.

The "Donate" option isn't working on the NICU Common Bonds page right now but they gave me the following information if you would like to make a donation to this group.
  • Donations to Common Bonds can be made through the Utah Valley Health Care Foundation.  That is the foundation at the hospital that funds the program, as well as the bereavement program.  People can call them at 801-357-7600,  or mail a donation to : 1034 N. 500 W. Provo, UT 84604 Attn: Foundation. State that the donation is for Common Bonds."
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The Child Life office at Utah Valley Regional Medical Center. They helped us and Aurelia SO MUCH when Noah was getting ready to go to his last family. The health and strength of our family right now would have been very different were it not for the Child Life specialists. They did some play therapy with her, taught us about how children her age grieve and taught how we could best help her through losing her brother. They recommended a few books to help Aurelia through her grief. We only worked with them for a few days but it made an incredible difference for our family.

**I've been trying to get in contact with the Child Life office to see if there is anything we can do to help them continue helping other families but haven't heard back yet. There are a few books they recommended to our family during our stay and we're considering getting some for them to have on hand. I'll post an update later when we figure out the best way to help them keep helping others.
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Lastly, I can't say thank you enough to his UVRMC NICU team. This isn't for donations or volunteering but it's important to us to acknowledge the incredible role his NICU team played so long after he left them at 9 weeks old.
  • His nurses loved him SO much. So, so, so, so much. When one of them asked me if she could visit him up at Primary Children's I said "of course!" We know how much they love and adore him and we're so thankful for that. We were thankful to hear every detail of his early life, every memory of him, everything they knew about his sweet little personality.
  • One of his very favorite people was Angela, one of his NICU OTs. She got to keep working with him in our home as his Early Intervention OT. Noah lit up for anyone and everyone walking into the room but with Angela it was even more so. He knew his Angela. She was one solid source of continuity through his birth family and ours. All of his OTs in the NICU were so supportive, so encouraging. They are very, very good at what they do both for the little babies and their parents. They work to help the babies progress and help the parents learn and feel comfortable helping thier baby progress further.
  • His respiratory therapists, especially Reggie, were big fans of Noah's too :) He was always a respiratory champ in the NICU so fortunately he didn't have to spend much time with his respiratory team but they spent lots of time coming over to enjoy him anyway :)
In the NICU at 7 weeks old

2 comments:

  1. Oh Jessica! He was such a blessing to so many people! What a blessing to share in his life- thanks for
    Sharing him with us too. Children's hospitals are amazing!!!! Wish I could give you a big hug through my computer! You are an incredible
    Mother and daughter of God.

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  2. I love this list! Thank you! I will definitely be looking into how I can donate in my community in honor of Noah :) Love you! Also, I know that the Child Life services at UVRMC used to like to receive handmade pillowcases.

    ReplyDelete