Andrea Posted December 16, 2006 Share Posted December 16, 2006 My neighbors had twin boys 40 days ago, there were problems, they had twin-to-twin transfusion. The little one is not going to make it The other one should make it, but still has some issues. They also have two boys ages 4 and 6. I was wondering if anyone had any advice on what I could do to help them or what I could bring them? I do not know them that well b/c we just moved in a year ago. I have "big brother" presents for the boys, but I know now is not an appropriate time to bring them. Any ideas on what I can bring the family, or just a card? Thanks. Quote Link to comment Share on other sites More sharing options...
Andrea Posted December 16, 2006 Author Share Posted December 16, 2006 Thanks Katie Quote Link to comment Share on other sites More sharing options...
Welthy Posted December 16, 2006 Share Posted December 16, 2006 (((Andrea))), I have no suggestions (or a mind for that matter), but just wanted to send you kudos for being such a kind-hearted person in the face of all the adversity you have gone through lately. I'm sorry for your neighbor, but you amaze me with your thoughtfulness. Welthy Quote Link to comment Share on other sites More sharing options...
Andrea Posted December 19, 2006 Author Share Posted December 19, 2006 The littlest twin passed on his 50th day of life And the father's father (so grandfather) passed away just 5 days before the birth suddenly without warning or being sick of a heart attack. Life is just too short and precious. Quote Link to comment Share on other sites More sharing options...
Kasey Posted December 19, 2006 Share Posted December 19, 2006 Aw geez, Andrea. Life sure does make me wonder sometimes. That family is a priority on the prayer list for our Christmas Day church service. Kasey Quote Link to comment Share on other sites More sharing options...
Nick C Posted December 19, 2006 Share Posted December 19, 2006 I know for me, just knowing people knew was helpful. Maybe just a card. And a phone call to follow up a few weeks later.? Quote Link to comment Share on other sites More sharing options...
ztweb Posted December 19, 2006 Share Posted December 19, 2006 OH my gosh. What a horrible thing. There is nothing more I can say. may God watch them, guide them, and grant them peace. Jen Quote Link to comment Share on other sites More sharing options...
ErinC1973 Posted December 19, 2006 Share Posted December 19, 2006 There are just no words for tragedies like this I didn't have ID twins, so no TTTS but my daughter had IUGR and she was just 3lbs9oz compared to her brother's 6lbs8oz. I was so lucky she was strong and healthy, just too small for her gestational age. But I have many MANY friends with ID twins who had TTTS issues. Some made it, others did not. I have not lost a child, but when I had my miscarriages, especially when I lost my daughter Brigid, I longed for people to recognize that I had lost a baby and call her by her name. One thing I realized is how different the pain is once you have had children already. Not worse or better, mind you; just different. So, telling them that you're there for them is one thing, but acknowledging his life and existence is so important. Personalizationmall.com has ornaments you can customize; I did one in memory of my mom with the year she was born and the year she died. Something with the baby's name on it would be very touching. Or you could make a donation to tttsfoundation.org in his name. And every year on his birthday, remembering him would touch his parents so deeply. Peace be with that family during this terrible time. I can relate to how hard it is to bring a life into the world when you're grieving the loss of another. My mom died 26 days before Ian was born, so she never knew him. Quote Link to comment Share on other sites More sharing options...
cindy0519 Posted December 20, 2006 Share Posted December 20, 2006 Andrea, I have twin granddaughters that were born at 26 weeks with weights of 1lb 2ounces and 13 ounces due to TTTS. The larger baby and donor(Destiny) spent just over 3 months in the NICU and the smaller baby and recipient(Faith)spent almost 8 months in the NICU. The complications and challenges that both babies faced were nothing short of amazing and very very heart wretching! In our case (thank God!) neither baby died though we did have many, many, many touch and go times with Faith and still continue to have issues today (it is highly unlikely that she will see her 5th birthday due to the many complications that she continues to battle related to the TTTS). Having experienced the effects of TTTS and sat in the NICU for many, many long days and nights I would suggest the following ideas: * if you can find micro premie clothes or even doll clothes that don't look like doll clothes they would be very good. When you can finally put "clothes", even just a cap, on your child for the first time it is SO incredible and something you long for since doing things like this make you feel like your baby is "normal". Often the NICU has some things but nothing is the same as putting your child in "their own clothes"! * the NICU staff told us music was soothing for the babies and made them breath, maintain stable vitals and grow better- so any CD's of baby themed music or relaxing sounds and a small (the NICU is very crowded) CD player would be a good idea * same as a caregiver for a cancer patient - I'm sure mom and dad are spending every waking moment in the NICU - maybe you can offer to run errands, do laundry, wash dishes etc. I know next to nothing got done at my house for quite a long time as it was more important to be at the hospital than mopping a floor * Ask mom or dad if they would like company for a while at the NICU - I can't tell you how many times I sat alone in the NICU and it would have been nice to have a some company sometimes * Maybe a couple of books on caring for a preemie. The Preemie Parents Companion: The Essential Guide to Caring for Your Preemie in the Hospital, at Home, and Through the Years by Susan L. Madden was at each isolette in the NICU the girls were in and was so helpful in explaining some of the things and medical terms we encountered that we bought one for home too. Sorry to right a book. Also if they haven't found it yet there is a TTTS Foundation and with a simple phone call they can get a packet of information that will be very helpful. They also have a discussion board that is fairly active and offers some much needed support. The website is http://www.tttsfoundation.org/nicusupport.html I can only imagine how difficult this time is for your friends. In the 8 months we were in the NICU we saw many families experience this heartache and it left me breathless each and every time. I will definately keep your friends and their babies in my prayers. I pray the stay in the NICU is short and the baby continues to progess to a strong and healthy child! Cindy Quote Link to comment Share on other sites More sharing options...
Andrea Posted December 20, 2006 Author Share Posted December 20, 2006 Thanks, I will make a donation to the TTTS foundation. I appreciate the input and I know they appreciate the prayers Quote Link to comment Share on other sites More sharing options...
ztweb Posted December 20, 2006 Share Posted December 20, 2006 You are truly an amazing person and friend, Andrea! Quote Link to comment Share on other sites More sharing options...
Suzie Q Posted December 20, 2006 Share Posted December 20, 2006 Andrea, You've been given very good suggestions already. You might consider giving the "big brother" gifts anyway. After all, the babies were born and should be acknowledged. Plus, the remaining twin seems to be holding his own. Do they neeed help wrapping any last minute Christmas gifts, buying any last minute groceries? Even something as small as running the vacuum or picking up toys, etc can be a big help. Offer something concrete, as opposed to "if you need anything, call me." I tended to accept the specific offers of help (plus, they are harder to refuse). Bless you for your kind, tender heart! ~Karen Quote Link to comment Share on other sites More sharing options...
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