J.R. asks from Dallas, TX on June 12, 2010
Open Heart Sugery on 4 Day Old
Hi moms! I decided to turn to you all, once again, for some of your great wisdom. One of my friend's, and her husband, moved here (temporarily) from out of town to have their son. He has several rare and dangerous heart defects and Children's here is where they trusted the most. She had him Monday, and he's had some sort of operation almost every day since. He had open heart surgery at just 3 days old. We all know that this is a very difficult time for everyone and they are VERY lucky to have so many people rallying around them as support. There is a blog to keep everyone up on what is going on which is nice for us. I am fairly sure they are taking full advantage of the services/support the hospital offers and they do have some family coming in and out of town to be with them as well.
I, fortunately, have never had to deal with something like this and this is the first time I've had a friend and their child go thru this. We are friends, not great friends, but my heart ACHES for them. Has anyone gone thru a similar situation? I want to do something for them but I don't know what? They're basically living at Children's in his NICU room and I just wanted to put something together for them. Any suggestions are greatly welcomed. I know the best thing I can do is just be here if she needs me, and she knows that, as well as pray which I've done just about every hour. Can anyone offer some advice? Also, PLEASE keep their sweet son in your prayers as well. Thank you in in advance.
So What Happened?™
Thank you all so much for the wonderful suggestions and for keeping sweet Cohen in your thoughts and prayers. He is such a little fighter! He turned 1 wk today and has already had 6 surgeries! I do believe in miracles though and I think Cohen is one! In the coming weeks I will be taking those great suggestions into action as mom and dad just received a good basket of LOTS of things from their friends and family back in Tulsa. If you want to keep up with Cohen's progress you can go to
http://sendlovetocohen.blogspot.com/ It's a site that a friend of theirs is keeping updated. Megan, the mom, blogs about it at http://www.inthiswonderfullife.com/ There is also a facebook fan page called Send Love to Cohen. Please keep everyone in your thoughts and prayers! I TRULY appreciate all of your advice and concern. Thanks!!!
T.C. answers from Colorado Springs on June 12, 2010
I haven't read any of the answers, so I hope I'm not a total repeat of everything already said. But, I think one of the best things you can do is bring food to them. Meals: breakfast, lunch, dinner. Snacks, anything other than what they can get there, which is not the best stuff to be stuck eating all the time. Fresh fruit, etc. It gets really expensive buying all that stuff constantly. Do you have a network of people who would be willing to chip in and help with the food? It would be so great if you could have a stream of meals being brought to them. If you have time to go and sit with her on occasion, I'm sure she'd appreciate that. It can be really comforting to just have someone there with you. What about blankets/pillows or even a cot that they can set up at the hospital to catch a quick nap. We've done that for people, too. It was so appreciated. I'm not sure what all they have access to where they are. sometimes for NICUs they have beds for the parents to catch a nap in. It's so sweet for you to be willing to interupt your schedule to minister to your friends. Ask if any errands need to be run for her. You might want to call before you head over to the hospital. Tell her what you are bringing and let her know you'd be happy to stop by the store on the way. Does she need or just want anything? A Starbucks coffee? Something fun like that? I pray that you will be able to find what she needs and bless her.
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D.H. answers from Indianapolis on June 12, 2010
Prayer for the little one it is.................I think the best and nicest thing you can do is make sure they have food.......and munchies...........I know that sounds really dumb.......but when my Mom was in the hospital, I wouldn't leave to eat.....and at times I would get hungry, but wanted something to munch on.........apples, oranges, are great as well as cookies.........whatever they like...........as for food. I don't know if they will allow you to bring up a cooler, or have a place for them, but things that can be kept there for them at any time.....middle of the night or during the day.......microwave things, popcorn, dinners, ect.....they do make dinners now that don't have to be refrigerated, that might be a better idea......
I know it's good for them to leave and get out of there, but sometimes, you just don't want too.......but if you can grab them and take them out to eat, that is a wonderful thing just taking them anywhere.....change the surroundings ...... give them a mental break.......if they like puzzle books, that is a good mental breaker too....
I know this all sounds simple, but right now, that's what they need....that and to be able to just talk........about him, the weather, whatever they want to talk about........
I'm sure no matter what, you will do just fine.........they will appreciate the caring...........
1 mom found this helpful
R.R. answers from Dallas on June 12, 2010
My daughter had a heart transplant at age 16, in Dallas, just a stone's throw from Children's at St. Paul. I've been there, done that.
I have a few suggestions. The hospital food is boring after awhile, so is fast food take out. Go to a restaurant and order take out - like Chili's, on the border, something like that. Better yet, if you can talk them into leaving the hospital for awhile, take them out to eat. Bring a bag of snacky type foods, chex mix, grapes, chips. Once someone brought us a small cooler we could carry around, and a supply of bottled waters, juices and sodas.
It is also incredibly boring in ICU's. Anything they can read, magazines, puzzle books. If they have a hand held game system, buy them a new game for it. If they have a kindle, load it with books. Offer to take their car and wash it or have the oil changed, and fill the gas tank. See if there is a massage therapist at the hospital and arrange for a massage for them.
If they live near you, offer to go do laundry for them, pick up mail and bring it to them, mow their lawn, weed the garden, take care of pets.
One final word - usually people offer all sorts of help, and are turned down with a thank you. Be persistant that you would love to help. Ask and offer again and again.
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L.I. answers from Dallas on June 13, 2010
My daughter had a heart transplant when she was 2 years old and I found myself living at the hospital. Some of the things I found nice were when a friend would come up and take me out to eat to get away from the hospital, or even out for a glass of wine! Some friends found out what fast food places were in the hospital and got us gift cards to those places, because yes, those places did get boring, but a lot of times we still needed to eat there - there was a Starbucks by our hospital, so that was a great gift card - lots of late nights and early mornings. One friend brought us a mini DVD player so we could all watch movies (at that time the hospital didn't have DVD players yet) - if the hospital does have a DVD player brings some DVDs you know they would love to watch - it does get very boring. If they don't have a laptop computer, lend one to them - this is something they can't do without. A great book for Mom I recommend reading is a collection of short stories called "A Heart of a Mother" - I wish I could remember who it is by, but it is a collection of stories of mothers and their kids who have gone through different heart diseases and surgeries. It is very touching and got me through. They seem corny, but the Chicken Soup books are short stories and inspirational too. Short stories are good because sometimes that's just all you can concentrate on. Magazines and lots of them got me through. These days I would want an Itunes card to get apps for my itouch, so if they have an itouch, ipod, or iphone you may consider that. Fresh clothes are good too. Chances are they are in the hospital and forgetting to change clothes some days - days mesh into nights into days, etc. Bring Mom and Dad new shirts or something. My friend had a special shirt made for me with "Gabby's Mom" printed on the front of it. It was perfect because that is how all the nurses referred to me - they couldn't pronounce my last name! And lastly, offer to sit with the child so the parents can have some time away from the hospital together - they need time together and time alone away from the hospital or they will lose their sanity! Sometimes you have to just show up and do it - they may not realize they need it until they are gone! Also and comfy pillows and blankets from outside the hospital if they are sleeping there - the ones in the hospital are not comfortable. And last but not least - try to be in touch and be a friend for the long haul - many people drop off after the surgery is over and they think everything is okay. With heart kids this is seldom the case. I know my daughter will be dealing with her heart transplant for life, and since she got it everyone thinks she is "fixed" - she still is one medication for life and doctor visits for life with complications that can arise anytime. Just be a friend and listen for potential needs. If they need a fundraiser - they best thing you can do is be a part of the fundraiser committee - it is hard to get people to do this. Sorry about the long answer, but its just too familiar ground. Also, We had our surgery at Texas Childrens in Houston, but I know that Childrens in Dallas has a support group called Heart to Heart that is very good. It is open to anyone, friends included - so you can check it out too - but definately let them know about it if they don't already. The website is http://www.heart-to-heart-tx.org/. I will keep your friend's family and baby in my prayers. I know how hard it is.
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T.E. answers from Dallas on June 13, 2010
I love the previous suggestions and would add one more, take them a teddy bear of other stuffed animal. This poor mom and dad probably aren't able to hold their precious newborn and would probably love to have something comforting to hold on to.
I'll keep them in my prayers.
1 mom found this helpful
S.K. answers from Kansas City on June 12, 2010
Be ready to hang in there for a long time. At first, many people come forward to help. But overtime I am sure things settle down. My grand newphew has been in the hospital since birth. He is finally home after 3+ months and lots and lots of 2 step forward, one step back dances. He has to go back for another major surgery soon and will someday need a heart transplant. He's eating through a feeding tube directly into the intestines. He's just 9 pounds and he was 9 pounds at birth.
This is the kind of thing that will drag on for months and even years and life will never be normal. So being there for them down the road is one of the biggest gifts you could give.
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C.N. answers from Minneapolis on June 12, 2010
Help them with their basic needs- making sure they have the toiletries, food, clothes(maybe do laundry for them), beverages. Also, no matter if they have insurance or not- the expenses of just being there and away from work are substantial. The idea of a fundraiser or financial help is a very good one. They need your emotional support as well as physical. Sorry to hear about their little one's struggles. Let's hope they can get this resolved.
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A.W. answers from Dallas on June 14, 2010
I believe ther are also some free web sites you can post the updates to for friends and family so she does not have to update 20 people every day. Just update the site. Unsure of the name, but I know they are out there.