I have been lucky to have found wonderful resources, including blogs (several of which adorn my sidebar), and the Babycenter Down Syndrome Board. I decided that I wanted to compile a list so that other parents waiting for surgery could find a number of personal testimonials in one place.
If you have suggestions or would like me to add a link to your own blog posts, please e-mail me and I would be thrilled to add to the list.
Blogs and Posts
Blogs on Down Syndrome and Open Heart Surgery
The Blessing of Verity.
If Your Baby Needs Open Heart Surgery This is a great link that includes suggestions for friends and family who want to be supportive.
Our Cora Bean
Pudge and Biggs
Pudge and Biggs
Confessions of the Chromosomally Enhanced
Fearfully and Wonderfully Made
Reagan's OHS (See the sidebar. Most of the most popular posts are about Reagan's OHS.)
Joey's OHS (Scroll through June 2011 posts)
Garden of My Heart
Charlotte's OHS (Scroll through October 2010 posts)
Trip on the M Train
Megan's OHS (Scroll through May 2010 posts)
The Ailts Family
Calvin's OHS (Scroll through November 2010 posts)
My Liddy Bug
Liddy's OHS (Scroll through July 2011 posts)
The House that Jade Built
Life as We Know It
The Hailey Herald
Tales from Graceland
(Scroll through August 2011 posts; follow-up continues into September too)
Daniel's OHS (Scroll through September 2011 posts)
My Stubborn Little Miss
A Hodge Podge of Randomness
Sweet Pea's OHS (Scroll through October 2011 posts)
Prayers for Mason
Mason's OHS (Scroll through September and October 2011 posts)
Making the Most of Today
My Precious Little Princess
Lauren's OHS (March 2012)
A Little Something Extra (May 2008)
The Little Holt's
Isabelle's OHS (September, October 2011)
Ben's Blessings: Our Journey with Down Syndrome and ACC
A Brighter Sunshine
Blessing and Bother
Life as We Know It
It's good. It's Bad. It's Ugly.
Sean's OHS, October 2010
Someone "Extra" Special
The Sumulong 3
Those Crazy Kackleys
3 of 21
Concave Bed, Concave Life
My Personal Suggestions
Read and ask questions. Read about the details of the defect, what the repair entails, what the possible complications are. The internet is a vast resource. Your cardiologist will also be able to provide information to you. Talk to your surgeon about what to expect during and after the surgery. Discuss the risks and the complications.
Follow blogs. Some of the blogs I've read give play-by-play summaries of their experiences and others give after-the-fact details. Either way, it's good to hear other parents' perspectives, from the "easy" cases with no complications to the ones that had some hurdles along the way.
Get support from those who've been there. Connect with other families who have been through OHS through blogs, online forums or social media. You can find a wealth of contact information here.
Look at post-op pictures. They're hard to see, but looking at pictures of other little ones is very helpful, since you'll know what to expect when you get to first see your baby post-surgery. Read about what tubes, wires, medications will be used so that you know what to expect. You'll find most of these on other family's blogs.
Talk to your family and friends about the surgery. If you are comfortable with sharing, start a blog or post about the surgery on social media. Let your friends and family know what's happening. Although you may feel alone in your experience, it can be wonderful to have the support of many people thinking or praying for your child. Having your own blog or a CaringBridge page can be a good way to keep family and friends updated on the day of surgery and afterward. That way you don't have to worry about providing verbal updates during a very busy time.
And if you are a private person and don't wish to share publicly, then do what makes you most comfortable. Letting loved ones know about your boundaries about sharing online and on social media may help avoid upset feelings.
If you want to have friends and family with you at the hospital, or at home to help run your home or care for other children, prepare for this in advance. It's OK to ask. In fact, many of your friends and family will be happy that you did.
Prepare for the hospital stay:
Milk: If you are pumping for your baby, keep up with it in the hospital. Bring a small cooler to the hospital. After Cora's surgery we often found that the nurses couldn't always get her milk to us right when we needed it. Especially if there was a shift change going on. So keeping a couple of extra bottles of milk (or even your favorite formula) on hand can make it way easier to feed your baby at the right times. Also, bringing your own bottle warmer can make feeding much quicker and easier. You have to rely less on the nurses. They'll probably appreciate it.
Prior to surgery, find out if there is a pump available to you during post-op and a pumping room on the surgery day. Ask where you can store your milk. This may change from surgery day to the ICU to the main floor, so find out the details in advance.
Food: If you are pumping or nursing, many hospitals will offer nursing mother's food trays at no cost to you. Take advantage of this. That said, it can be great to have non-hospital food to eat, for you and for your partner/other family members at the hospital. If you live in the vicinity of the hospital, arrange for friends and family to bring food to you. We signed up for a Meal Train online that allowed people to sign up to bring us dinners during the post-op period. When Cora was discharged we updated the site asking friends to deliver to our house. It was wonderful to have home-cooked meals and brief visits with people we loved during her recovery.
Bring: For you: Your computer, cell-phone, phone charger, a notebook and pen, book to read, comfy clothing for sleep and day-time, toiletries, a water bottle, snacks and some cash. For baby: Favorite toys, blankets and books for the post-op period. Leg warmers can add personality and warmth to a baby still covered in tubes and tape. Bring a favorite photo of your baby, so the staff can see what your child looks like not covered in tubes. And of course, bring loved ones for support.
If you're not local: Ask about your local Ronald MacDonald House or if there is a place to stay while your child is in the hospital. Many parents swear by having a "home" away from the hospital. I didn't leave the hospital myself. Most hospitals will provide you with a cot and some have a parents' room when your child is in the ICU. Perhaps I would have slept better in my own bed, but it's hard to say. I didn't get much sleep in the days prior, during or after the surgery. Hopefully you'll fare better that I did in the sleep department.
Trust your Instincts. You know your baby best, so speak up if you feel that something's not right during recovery, whether it's about controlling pain or noticing out of the ordinary behavior. Since Cora's pain meds were discontinued less than 48 hours post surgery and she seemed to be in quite a bit of pain, we took it upon ourselves to keep track of all her pain medication doses. And we'd page the nurses when her meds were due again. Definitely speak up if something feels wrong to you.
Rest. If you can, try and rest. Sleep while your baby sleeps, especially in the hours immediately after surgery (If you can). Take shifts by the bedside so you can step away here and there, and if you're comfortable with it, get out for a walk or a meal while a trusted friend or family member sits with your baby.