I rarely post on her but I read a lot of the messages on TC. I was wondering if anyone is has a similar situation to me. My triplets are 17 months old but they were born 4 months early (which means they were 25 weekers). Anyway, they are all boys. Our baby A is perfectly healthy and fine. Baby B is completely Deaf and our Baby C is Completely Deaf, had Cerebral Palsy so bad that he has no head or body control. He just lays there. And one of his retinas detatched so he has minimal vision in his left eye. Don't get me wrong I am so very greatful that God has saved him that he is with us as he almost died twice during is 124 days stay in the NICU. However, at times, I find myself a little envious of my other friends who have triplets when I see them playing together and moving and crawling about. I feel so bad for about baby C that he can't hear and can't move. Even though I had a cerclage at 25 weeks and on bed rest I was never hospitalized. I keep thinking that I should have pushed my perinatologist to take better care of me so our babys would have had a better out come. I don't know why this whole situation is bothering me lately. It's like having twins and a new born and at times I feel like I got cheated out of my triplet dreams. I guess I'm just wondering what type of situation those of you with special needs kids have. It would sure help to know that I am not alone in how I feel.
Thanks.

Hi Dear: First my heart goes out to you. I know first hand how hard it is to see our little angels go through life and how it feel to have them be cheated the way the have. Having said that I most say that we are sooo very lucky to have these sweet little souls depend on us. I was devastated when I found out that my ds was autistic and less than a month after that my dd had CP... I went for weeks non stop crying, recenting, questioning God and even my faith..blaming myself for "screwing with nature" as so many cruel people had put it! why me? why my children?, and so on. To this day I still worry about what the future hold for them. I pray for health so that I can be there for them but I also remember the children I lost, those I'll never get a chance to hold or sing to again and I realized how lucky I am to have them here. You are definitely not alone. It is overwhelming, devastating and simply put it freaking SUCKS. There is nothing you could have done. Please don't blame yourself! Celebrating and accepting them the way they are was hard but sooo rewarding. I do allow myself to cry and have my private pity parties..then clean my face and move on. What other choices do we have? hth
BIG HUGS Ivy


http://by.lilypie.com/sUj6

Welcome to our group...but I'm also sorry you have to be here.

My triplets are former 27 weekers. I have two with CP -- one very mild and one moderate.

Noah uses a powerchair for most mobility but he can walk short distances with a walker. He has had 9 various surgeries. He has normal speech and is in a 2nd grade classroom with his two sisters (he has a full time paraprofessional to help him). He is probably about a year delayed in his schoolwork but still making progress.

At 17 months he couldn't do much of anything - he was not rolling, crawling, sitting, etc... It's hard to predict the future when they are that young.

I still have some of these same feelings when I see other sets of triplets. I would love to see all three of my kids running around and playing -- but that just isn't going to happen. I try not to focus on the "could have beens" and just appreciate my life as it has been given.

A good group for CP kids is http://health.groups.yahoo.com/group/OurCPKids/ I actually started it back in 2003 and there are now over 700 members. It's a great group of people who will understand how you feel. There are several sets of triplets there.

Big Hug -


Lori --
Mom to Zac (9/91) and triplets Noah, Karissa & Jazmine (5/98 at 27 weeks)

I'm in a similar boat as you. My boys are 16 months. One of my sons has CP and visiually impaired. We thought he was hearing impaired but isn't. His visually impairment isn't as significant as your son's is. Have you connected with the United Cerebral Palsy foundation? I'm sure you're getting EI. Have you looked into blind and hearing impaired schools? They should have people that work with babies. The lady from the blind school who came out was very helpful. The UCP can be a great support financially and emotionally. Our local chapter has lots of money available for families. Having a child with special needs sends you through the grief process. Denial.. and the other 4 steps. Blaming yourself is another stage. I happen to be a PT but it is not any easier coping! Please know there are others going through the same feelings!
Amy
Garrett, Michael, Nicholas
6/9/05

Amy
Garrett, Michael, Nicholas
32 weeks 4 days
6/9/05

Hi Deb!

I have been thinking about you all a lot lately. I loved the pics you sent out. I cannot believe how big the boys have gotten. I know I have not kept in touch with you. I apologize.

I'm a bit in the same boat as you. My trio is almost three and Connor is only testing about 4-6 months. He cannot sit up yet by himself. We still have some neck issues that prevent him from doing this.

But I know what you mean about feeling a bit left out of the triplet experience. When I watch the girls play and interact I wonder how it would be and how Connor would be interacting had he not had his "problems".

We just a few months ago got Gwynne off her O2 and are still in the process of getting her off her meds. It is a long road. And I know I said this to you before there is light at the end of the tunnel. Things get easier little by little.

I will PM you with my phone numbers. Please feel free to call me ANY TIME.

Amy
Wife to Jason(pixelpusher)
Mom to Gwynne, Connor, Chloe 11/03/03
25wks 1day

www.caringbridge.org/visit/connorferris

My son too at 17 months could not even hold his head up. Now is 3 years old and doing great. He runs around in his walker and could do almost evrything the other 2 can do. At 22 months he got some head control and everything else just follwed. hopefully someday this will all just be a distant memory. Try to have faith. It does get eaiser as they get older.

Melissa
Mom to Domnick (CP)
Sophia
Gianna

Thank you all for your responses. It really helps to hear that I am not the only one who is dealing with this alone. I would have responded much sooner but it has been difficult to log on. I really do appreciate all of you taking the the time to post your reponses and it does give me some hope that there will be some sort of a future for our little Caysen. For now we are hopeful that Braedon and Caysen will be implanted with a cochlear implant sometime shortly before or after Christmas which will at least give Caysen access to sound. The doctor did tell us that even with an implant that it will be difficult for Caysen to understand so we will need to keep signing with him and that he will probably never speak. I am realistic about this but I am not giving up hope. This comes after both UCLA and House Ear Institute refused to implant Caysen with a Cochlear. Thanks Again.
Deborah
25 weeks triples born 04/21/05
Mom to Austin (Just started Walking last week)
Braedon (completely deaf)
Caysen (completely deaf, blind in the left eye, and spastic CP)

Boy, I know how you feel. I just had twins in July of 2006. One Boy and One Girl. I have 3 other boys too. So five total and I'm very happy I finally got my girl. The doctors took the twins at 32 weeks and 4 days and thats suppost to be considered safe. My daughter had no medical problems at all, just that she was a premiee. Her brother Twin B was born with NEC and because NEC can be so deadly they started him on triple antibiotic's. Alot of babies that have NEC crash and end up on vents. Thank God he never needed any O2 help what so ever, but the doctor's in the NICU kept putting off a head ultrasound that was suppost to be done because he was under the gram weight. When the triple antibiotic's just werent getting him better. They couldnt understand why he wasnt getting better the way he sould have been, he required a blood transfusion for anemia. Well I asked everyday that I saw one of the doctors when they were going to do the head ultrasound and they said they were not concerned, that he had no signs or symptoms when it sould have been done within (the longest) 7 days no more. Well on day 17 they did the head ultrasound and then when I called to get the results, the nurses kept telling me that the doctor who was incharge of his care was busy and would see me and my husband when we got there that night. When we got there, she sat us down with a nurse by her side and told me that twin B had a grade 3 brain bleed, and he was going to be transfered to Childrens Hospital (Boston). The next day he was transfered and they did their own head ultrasound,not only did he have a grade 3 bleed on the other side he had a grade 4 brain bleed. Grade 4 being the worst. We dont really know what his outcome will be but we know he's going to have permanent disability's we just dont know how bad yet, thats what kills is the not knowing, and I had 4 other kids and all were healthy I feel cheated, and I feel my other childern were cheated in a way because their going to have to potect him and stick-up for him all the time, but their strong boys and they and I love that little fighter in his crib asleep right now, he's got the cutiest little face. Just remember, God never give's you more then you can handle and Baby C was sent to you because God knew you were the most loving and caring parents that Baby C could have. You'll be fine. You're human and we all get scared, and guess what? That's O.K. and you're going to be O.K Marjorie

Also in the same boat, my three boys are 27 weekers and two of the boys had grade 4 bleeds and both required shunt surgeries. They are doing well but my baby C is also very very behind and also had menigitis in the NICU in the cerebral fluid. They gave me a terrible prognosis for him and every single day he amazes me in therapy. A couple of months ago he had no head control and now he has control. He is not sitting or rolling at all. Just today the two boys were sitting across from each other playing tug of war with a toy and I just looked at my baby c and thought oh I wish he could do that with his brothers. When I looked at him he just gave me the biggest smile ear to ear, like saying Mom it is ok, I am happy to be here. He is such a beautiful soul. My advice is listen to the Dr.'s but a lot of time they give us the WORST case scenarios, so follow your gut. These kids will amaze us and we will never take anything for granted again. I learn something everyday from my boys who went throught so much to be here and I still blame myself but I am trying hard to accept them for who they are and live day to day with appreciation.
Heidi
BBB 1/13/06 turning one next week!