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Latest Journal Update
Through this adventure we have gone through with Barrett thus far we have been blessed with love and support from family, friends, and strangers. Everyone comments on the courage and strength Nolan and I have had throughout this fight- and they always ask us about how we do it and what it’s like to be going through this scary and hard thing. I’ve said before that you really don’t have an option..when this situation is your situation you just have to be strong and do what you have to do but that isn’t entirely true either is it? There are people out there that would crumble or run away. Who these losers are I’m not sure but there certainly are people out there who couldn’t be strong when faced with the complicated illness of their child. Believe me, as positive as I may seem all of the time it is truly scary and hard to be the mother of a sick child and to have that surprise diagnosis so soon after birth, to spend all of that time in the CVCC at Childrens, and to have him have to go back. It is all scary and hard…but it’s also so much more. The CVCC at Childrens Hospital is an intense, beautiful, and hardcore world. First off, for those of you who don’t know, the CVCC stands for Cardiovascular CareCenter….it’s basically the NICU for heart babies. There are vast assortments of reasons for babies to be in the CVCC – there are more than 40 different types of congenital heart defects as well as blood vessel conditions, etc.
When I’m asked to describe what Childrens Hospital is really like, I say something like this:
The CVCC is hardcore. No doubt about it, it’s hard. It’s hard to watch babies struggling to live and breathe. It’s hard to be that parent separated from your baby. It’s hard to see families worried and crying about their babies. It’s hard to understand complex medical diagnoses and having to make impossible and difficult choices.
And yet...It’s SO wonderful. To see a person – at the beginning of their life, a very tiny but very real person- grow from a fragile, sick, and delicate state to stable, strong, and thriving before your eyes is incredible. To see your baby who was covered with tubes and wires, sick, medicated, tiny on a huge hospital bed... to see those tubes and wires go away over time, to finally be allowed to snuggle them, hold them, kiss them…it's fantastic.
The CVCC is scary. Hospitals are filled with equipment that is overwhelming and surprisingly big - for patients so tiny - that you can’t even see the babies through it all. Weird blue lights and plexiglass incubators, resuscitation bags and IV’s and monitors at every bedside. You have to sterilize yourself before entering, and it looks like nowhere you’ve been before. They try to make it cheerful with cute prints and happy colors, but it’s basically filled with so many complex machines and un-baby-like equipment that it can be intimidating. I am fortunate that I do come with some medical knowledge and a background in the field. It isn’t all foreign language to me and that has really helped me not only be able to digest the information coming at me, to witness the needles and tubes go in and out of my baby, but to also be able to explain it to family and friends that feel like what they just heard wasn’t English. I am thankful for that knowledge. These babies have such powerful personality and wills to live. The families and visitors that do everything they can to trust, learn, and love under such intensity. The most precious babies all reside there and heal there. It’s beautiful.
The Care is incredible. All of the babies are getting incredible care with the amazing staff and remarkable technology. It's all about love. And it's about people coming together - families, nurses,doctors, volunteers and so many more - devoting themselves to the care and comfort of our little ones. Nolan and I couldn’t believe how wonderful everyone was there. Not just their professional skills (which are hands down the best out there) but also their genuine care for the whole person. That baby is their priority but also that babies family. They were all over me about my recovery from the C-Section and the fact that I hadn’t had time in the hospital to recover, they cared about our stress, our comfort, and our needs as mom and dad.We weren’t ever talked down to or excluded from the discussion. You can feel the love. The hugs, the smiles, the shared tears, the whispered prayers, the gratitude, the hope, it's impossible not to feel inspired. Everyone doing everything we can to make a healthy and happy future for these amazing babies. It's great, valuable, and impressive work and as difficult as it is, it's a loving place filled with compassion and devotion.
It’s a handful. With all of the stressful and intense things happening, how could it not be overwhelming? It's every parent’s worst nightmare. It’s all so very real… babies and parents, life and death,rich and poor, celebrations and devastation, good and bad, joy and sadness.Nobody ever wants to have their baby there, but all are grateful for the chance at life that Childrens offers. No one comes out of that place unchanged. I love the CVCC.
With that all said...there is a lot we can do as far as awareness. No mother and father should have to go through the shock and surprise of your child turning blue from head to toe, struggling to breathe, struggling to live. Most people don’t know that 1 in 100 babies is born with a Congenital Heart defect of some kind. These defects are the #1 (yes #1) cause of all infant deaths in the US!That means that twice as many children die from heart defects every year than from EVERY SINGLE form of childhood cancer combined!!!! But not enough people know this, not enough people know that the funding for pediatric cancer research is 5x higher than funding for Congential Heart Defects (which is far more likely to affect you). Parents need to know about these defects in utero so they can process the enormity of the situation, so that the baby can be safely brought into the world…knowledge is power. Early detection is so important. I urge you all to learn more… I know I want to...
I can’t tell you how in love with Barrett I am…how he is my hero. He really is.
Barrett goes back to Childrens Dec. 2nd for a pre-op appointment for his Dec. 3rd heart cath. We are hopeful this solves the blockage issue and he can return home as a heart warrior done with heart surgeries/procedures.We will keep you all updated :)