My sister had a Down Syndrome baby

[Chicagoboy 0]

Nolan is his name and he is just the sweetest little thing.

It came as a big shock to his mom and dad and everyone else. He was born Feb

15th and is still in the NICU (level 3) waiting for surgery for his heart. A heart murmor was detected and a hole in his heart has not closed up so an operation is most likely.

Mom is over the Down Syndrome for now but the babys heart is still a major problem according to his Doctors. Time will tell they keep saying but he needs to gain weight before he can have the operation. His feeding with the bottle was good but now he fights it-so very sad I guess DS babies have sucking problems.

If anyone has any good advice I welcome your reply.

Peace!

[Penni60 45]

My prayers are with your family at this time. I can't offer any specific advice but here is the National Down Syndrome website link. I hope this helps.

http://www.ndss.org/

Nolan is his name and he is just the sweetest little thing.

It came as a big shock to his mom and dad and everyone else. He was born Feb

15th and is still in the NICU (level 3) waiting for surgery for his heart. A heart murmor was detected and a hole in his heart has not closed up so an operation is most likely.

Mom is over the Down Syndrome for now but the babys heart is still a major problem according to his Doctors. Time will tell they keep saying but he needs to gain weight before he can have the operation. His feeding with the bottle was good but now he fights it-so very sad I guess DS babies have sucking problems.

If anyone has any good advice I welcome your reply.

Peace!

[the best me 6]

The sucking part probably has to do with a large tongue, which many with DS have. It effects speech as they get older. In my former life (before kids) I worked with Adults with Developmental Disabilities, and many had Down Syndrome. The heart problem is typical, too, with DS.

Your family will never be able to predict the joy this little boy will bring to your lives in so many ways! Just wait and see what God has in store for you. It will be lots of things both happy and difficult, and as with any child, as he grows and thrives, he brings his own special qualities to the family and will be irreplaceable!

Good health to little Nolan as he undergoes his heart surgery...prayers for him and your family. Please keep us posted!

Good job on the link, Penni! Perfect!

[New Hope 37]

Heartfelt prayers for you and your family! Hoping Nolan gains the necessary weight to have his heart surgery. Please keep us posted.

[princess_n_thep 2]

My thoughts are with you and your family during this time. I hope Nolan recovers quickly and is soon on his learning path. Another site that may help is the one I listed here. It is a comprehensive list of many sites dealing with Down Syndrome (international, US organizations, medical resources and online magazines/newsletters) and even has sites for the locations in which you live to get you in touch with a support group. I hope this helps you and your family.

http://www.downsyndrome.com/

[claraluz 2]

Hi, I am cheering Nolan on, hoping he gains weight. Has there been any discussion of giving him a feeding tube temporarily? My guess is that at some point, he will have a speech and/or occupational therapist to help him with his sucking. They are great at this. I work with children with all kinds of disabilities including Down Syndrome. I second what the others have said. The best advice for your sister is to educate herself about this syndrome and to meet other parents with children with Downs - either in person or online.

Best of luck to all of you.

Nancy

[Pippy 0]

I'm also cheering Nolan on with all my heart. My son who is nearly 10 doesn't have down's but he has lots of similar problems, he's been in and out of hospital lots of times but there are no words to express how special he is and how much pleasure he brings to our family. It was quite a shock to us to as we had four other healthy children. I'm sure Nolan will be a little fighter and fingers crossed he will begin to feed again himself.

((hugs)) to Nolan and warm wishes to all your family.

Helenxx.

[porclndoll 0]

I have a son with Down syndrome...He is seven now, and man, I am not kidding when I say he is THE ABSOLUTE BEST PERSON I HAVE IN MY LIFE. I wouldn't want him any other way. He has taught ME so many things its not funny! Anthony was in the NIC unit for two weeks before he came home and he had soo many problems eatting it wasn't funny! He had a hole in his heart.....but thank God, his closed without surgery. I have had more happiness with him in these seven years, than I have ever had in my whole 32 years olf life! He is sooo special and it goes way beyond just having special needs.........If you have any questions specific to Downs, or if your sister needs someone to chat with, feel free to contact me! You can email me through this site....Best of luck to you all, and I pray that Nolans surgery goes well!

[nightingale2u 42]

Congratulations to Nolan on his entrance to the world and sending prayers for his surgery and for a quick recovery. I'm sure he will be a blessing for your whole family as some of the most wonderful gifts come from unexpected challenges. Babies are miracles and I'm sure Nolan is a beautiful gift.

[HarleyNana 10]

Check with Burnsun too, she adopted two children with DS. She could probably offer some advice as well. Porc, it sounds like you've been blessed with such a wonderful son.

Such a tiny little heart to have to go through so much, give Nolan an extra kiss for me.

[Vicki Loichinger 444]

Prayers and good thoughts comming Nolan's way. He will bring such joy to your lives. God has a plan. We may not know or understand why, but God has a plan.

I have a step son with Cebral Palsey and after being a Mom to four healthy, athletic, intelligent sons, this has been a new world for me. But Daniel, is the light of my life. We have full custody of him and I tell you I can't imagine a day without him.

My son's aunt has DS and she has been such a loving part of their family. She is nearly forty now.

I pray that Nolan gains the strength he needs for his heart surgery. I pray for you sister.

Hugs

Vicki in Indy

[Debbydo 0]

I have a special needs son whose also 7. Nicky has taught me the meaning of pure love. We have a connection that iis woth out words. The journey so far has been filled with so many emotions.

My steadfast goal is to make sure he's happy and being the best he can be. Love to your sister and her family and to you for seeking out strength and support for her and you.

There are local support groups filled with good infamation. Don't get freaked out by what you read. My son is autistic and I learned to read with a discerning eye for what pertained to us and left the other info alone.

Debby

Bandster in training

[Chicagoboy 0]

Thanks everyone for your kinds words. I'll will pass this on to my sister and her husband. Nolan will be in the NICU until he gets bigger and from there he may go directly to another hospital for his heart surgery or go home for a month. My sister is doing as good as can be expected for someone who is new to all this.

She drives 1 hour to the NICU everyday to see him. Lucky for her I live 5 min from the hospital so she spends a lot of time hanging around here.

I will update this thread when soemthing improves. The links some of you have provided were great I read thru much of them. I have enclosed a photo of this little guy for the world to see.

[Mariposa Bella 3]

I will keep your sister and Nolan in my prayers. When my son was born three years ago, he had some issues (one of which was feeding) and the doctor thought he might have some genetic problems, we spent a week in the hospital getting all the necessary tests, it was very hard during that week, waiting for results from test after test, we were very blessed that everything came back negative, except for some tiny heart murmurs (one of which is already gone). My son was finally diagnosed with failure to thrive, he has a difficult time gaining weight, (didn't get it from me) and was given some nutritional supplements to help him gain the necessary weight. He later developed multiple hemangiomas which he has had three surgeries to remove. It has been very difficult to see my child going through so much at such a young age. But He is turning three on Wed, and is a healthy boy who is full of life. Children are such a blessing, and you have to remember that God never gives us more than we can handle. I will keep Nolan in my prayers. Please keep us posted on his progress.

Love,

[Mariposa Bella 3]

He is beautiful.