Children’s Miracle Network Hospitals change lives! #HelpKidsLiveBetter

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Children's-Miracle-Network-Hospitals

Children’s Miracle Network Hospitals save and change lives every day. I know this because my life (and my daughter’s) has been changed for the better thanks to the support and care we have received several times at our local hospital, The Barbara Bush Children’s Hospital in Portland, Maine.

Every minute 62 children enter a Children’s Miracle Network Hospital for treatment. Let that number sink in. There is nothing more important than giving our children the best. As parents, we all hope and pray that our children live long, happy, healthy lives. We all worry about them being sick. Really sick. Most kids battle the odd virus or stomach bug, suffer a broken bone or ear infection. Those temporary ills go with childhood. But, there are so many kids that go through so much more before they are even old enough to tie their shoes or know their multiplication facts. These kids (and their parents) desperately need Children’s Miracle Network Hospitals.

Nothing prepares you for the moment your pediatrician tells you something is wrong.

Our regular doctor was on vacation that day so we saw someone new. Our 6 month wellness check-up should have been routine, but it wasn’t. It left us feeling hopeless, desperate, scared and overwhelmed.

I was very focused on the doctor’s body language and tone as he delivered the news that something was wrong. My daughter’s head circumference was significantly above the “normal” parameters.

I heard the worst: all the frightening possibilities.

Tumor, pressure on her brain, developmental delays, MRI, “water on the brain”, Hydrocephalus, “do not get online to research this until we know more”.

What was happening? I can say I didn’t cry right then. My eyes watered and I was in shock that this was happening to my happy, seemingly healthy baby. My world had just turned upside down. How were we going to handle this?

The wait for those answers was short. After a week (a lot of it spent crying and worrying), we knew what we were dealing with. Hydrocephalus: extra fluid puts pressure on the brain and can cause brain damage. It’s often
characterized by head enlargement in infants and can cause headaches, nausea, impaired vision, cognitive difficulties, loss of coordination, and incontinence.
Treatment is often a tube (shunt) inserted surgically into a ventricle to drain the excess fluid.

children's miracle network hospitals

This was the plan: My 6 month old baby would undergo brain surgery and have a shunt inserted in her head and tubing would be placed down her neck and into her stomach to allow the fluid to drain. Although a shunt generally works well, it may stop working if it disconnects, becomes blocked, infected, or is outgrown. All possibilities that would require several more surgeries.

What I learned was that I had to be my baby’s best advocate in so many ways.

I had to ask the hard questions and really listen to the answers. I had to be with her when they put her under for each surgery, watching them cover her face with a tiny little mask until she was unconscious. I had to sit in the waiting room those long hours, eager to see her neurologist and find out how things went. I had to be in recovery when she woke up, scared and hurting, I had to be the best Mom I could and make it okay for her.

My baby girl is going to be 13 next month. She has endured almost 10 separate surgeries now between the initial placement of the shunt, multiple revisions, replacing the medical grade tubing, and various other surgeries for issues related to the Hydrocephalus.  Through all of it, she has stayed happy and smiling, growing and learning. She is my world.

I’m indebted to Children’s Miracle Network Hospitals.

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If we did not have the support, professional services, patient and considerate bedside manners at The Barbara Bush Children’s Hospital, I don’t know what we would have done. My daughter needs the best treatments available. I need the support, encouragement, and overall belief that we aren’t dealing with this alone.

There are so many families out there getting the news that something is wrong with their child. Donating to Children’s Miracle Network Hospitals is one way to ensure these hospitals can provide the best care for these children. Every dollar raised at your local Wal-Mart or Sam’s Club (now through October 9th, 2016) goes directly to your local Children’s Miracle Network Hospital so they can provide more than $3.5 billion in charitable care every year.

Will you#HelpKidsLiveBetter and donate to the 2016 Children’s Miracle Network fundraising campaign?

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52 Responses

  1. Katrina says:

    Networks like these are so beneficial for our community. Thanks for reminding us of such a wonderful cause

  2. I am so glad that your daughter is turning 13! Sounds like the Children’s Miracle Networks Hospitals are great organizations and I’m glad your daughter benefited from them!

  3. Andrea says:

    Wonderful cause, beautiful story!

  4. My Teen Guide says:

    I would love to support this kind of program. I love those touching story it makes my heart happy with these people who helps.

  5. Mary says:

    I have a friend who learned that being her child’s advocate is the most important part of any illness. Her son was diagnosed with a very rare disease/birth defect. It’s incredible how much you have to fight for your child as a mom.

  6. Networks like these are amazing. As a mom, I am so grateful that they’re here.

  7. chastity says:

    This is such a great cause and that they were able to assist in your time of need! I will make sure to donate next time I am at Walmart

  8. Best wishes to you and your daughter. She is such a fighter. I hope she has a healthy future.

  9. Emily says:

    Wow, you and your baby are so strong! We dealt with a premature baby born at 33 weeks, but he was overall very healthy only requiring a two week stay in the NICU. It could have been much worse. This is amazing what they are doing to help families!

  10. So glad you are able to give back to a great cause. This is the best way to get through any traumatic event that you had to with a new born. Sending hugs.

  11. Milena says:

    Having a child that is ill and needs surgery certainly makes you step up and become an advocate! I’m so glad that you had a good experience with CMNH and that your child is recovering. Thanks for spreading the word.

  12. Shirley Wood says:

    We have an awesome CMN hospital right here in Middle Ga. My grandson was hospitalized there when he was 9 weeks old. They took excellent care of him. Your daughters story is inspiring. I’m glad she is 13 now and doing well.

  13. We have one of the leading Children’s Hospitals and this organization was a huge support when son was born early. I have supported CMN for years and continue to so so.

  14. Ashley says:

    Thank you for sharing your story. Hugs to you and your daughter. You are so right, we have to be the best advocate for our children we can be

  15. Sheila Jo says:

    You and your daughter are clearly very strong to have made it through this. Best wishes for a healthy future!

  16. Ruxandra says:

    This is such a great and important cause. Thank you for sharing your emotional story and it’s great that your daughter is feeling better 🙂

  17. Jennifer says:

    So glad your daughter is doing better. I remember when my daughter was hospitalized for seizures. It was so scary and my husband and I felt so helpless. The children’s hospital we went to was very great and put our minds at ease. So good you found great care for your little one.

  18. andrea says:

    What a beautiful story; thank you for sharing your journey. I know first hand how hard it is to have a sick child. It is wonderful to read that your daughter is happy & healthy. Blessings to you and your family.

  19. Pamela says:

    Such a beautiful post, thanks for sharing 🙂

  20. Nellwyn says:

    I can’t imagine how hard it must be to have a baby in the hospital! Supporting our local children’s hospitals is so important to me, we have a great one here in Toronto as well

  21. Thank you for sharing your story. My nephew is currently in treatment for ALL and I know how challenging it is dealing with a severe illness in a child. Support from these organizations is so critical for so many families.

  22. Janine Good says:

    This post was very touching. My husband was born 12 weeks preemie, died twice and was saved and brought to health in Australia where he was born. I am not sure if they have Children’s Miracle Network there, but it made me think of how important supporting this cause is.

  23. Ashley Voicu says:

    What a great advocacy! Children are worth fighting for.

  24. Jessica says:

    So sad to feel you’re not supported when you need it most. Thank God there are resources for families in need.

  25. ohmummymia says:

    Love this post! My sister lost his son 3 years ago because she delivered in 6 month of pregnancy but that little boy was fighting for two months and all nurses and doctors did everything what they could

  26. Rita says:

    Such a beautiful story! Donation is important!

    Rita | http://www.styleroundtheclock.com

  27. Debbie says:

    Thank you for sharing your story. We definitely need to support the Children’s Miracle Network. I can’t even imagine what it must be like to deal with such major issues soon after birth. Your hormones are already influx and now you’re making life altering decisions. I wish your daughter the best brightest future.

  28. SO true. This is so important. I love how you shared this message in a creative way. 🙂

  29. Jill Wiley says:

    What a fabulous article. Such a touching story. Lots of love and best wishes for a bright future for your daughter!

  30. Heather says:

    This is definitely something to bring more awareness to! We love the Barbara Bush Children’s Hospital too!

  31. What a blessing..great story

  32. Lindsey says:

    What a great story!

  33. Anna nuttall says:

    Beautiful post. It remind me of the amazing work that happen at GOSH – great ormand (I might have spelt that wrong – on my phone) street hospital, London. xx

  34. Liz says:

    Such an amazing organization!

  35. Indrani says:

    Very touching post at the same it has created so much awareness too.
    Children’s MIracle Network Hospitals is indeed doing a great service to society! I wish them great success!
    I am so happy your daughter has benefited!

  36. chaza says:

    Glad to hear beautiful baby girl is doing great. It’s very hard to see your kids get sick and suffer. Sounds like this hospital is doing such a great deed. Thank you for your bravery and sharing you story!

    http://www.hugshomemade.com

  37. Amber Myers says:

    Thank you for spreading the word about this. It is so important to donate. Your daughter sounds amazing.

  38. Kathy Haan says:

    <3 Thank you for sharing.

  39. Amanda says:

    Beautiful story and a fantastic way to spread the word about the needs of this organization.

  40. My youngest was born at 27 wks and I can NOT thank each day as I hear the giggles of my now 3 1/2 yr old for what was done for us at our Hospital/NICU and after she came home. This is a wonderful case. Thanks so much for sharing.

  41. This is a beautifully written piece about such a difficult subject

  42. What a blessing and a good cause! Nice 🙂

  43. Wonderful work Children’s MIracle Network Hospitals is doing for kids and their families. What a great way to give back!!

  44. My son was born at 36 weeks gestation and the care that those little ones need blows my mind.
    We don’t have a children’s Miracle Network hospital here in the city but we do have a world renown children’s hospital which we support any chance we get.

    • SavingCmnCents says:

      Supporting your children’s hospital is just as important! 🙂 I’m so glad to hear that you had the services you needed for your son!

  45. What a wonderful blessing to have the Children’s Miracle Network to assist in a time when you need support more than ever. I am grateful both for never having needed their services, but also to know that if I ever do, they’re available. Thankful that you daughter is doing well!

    • SavingCmnCents says:

      I am so grateful that they were (and continue to be) there when we need them! I will always support their fundraising efforts! 🙂

  46. What wonderful work Children’s MIracle Network Hospitals is doing for kids and their families. What a wonderful way to give back. I had no idea you could support them at WalMart and Sam’s Club! That’s awesome!

  47. Keikilani says:

    My children and I have also received amazing care at our local hospital! So thankful for Children’s Miracle Network Hospitals and all that they do!

  48. Jessica says:

    This was a very touching story and thank you so much for sharing. I’m glad to hear that your daughter is smiling and happy despite her hardships. I hope she has a happy, healthy future ahead.

    • SavingCmnCents says:

      Thank you for the kind words. 🙂 We have been through a lot and thanks to CMNH, The Barbara Bush Children’s Hospital, we have learned so much and my daughter truly does have a bright, happy, healthy future ahead! 🙂

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