Re: Tonya & is

[Guest guest]

Hi is! Welcome to the group. My son, , was also born

at 28 weeks, and I also had oligohydramnios. He was 15 oz. and had a

217 day NICU stay. His birthday is also at the end of October.

He'll be 12 years old.

Tonya, I just wanted to tell you that the illnesses will ease up as

Aubrey gets older. was probably one of the most critically

ill preemies that I know of to survive, and he was constantly sick

with pneumonia, RSV, and other respiratory illnesses when he was

younger. He was on oxygen for almost 3 years, and then needed oxygen

again every time he got sick. His illnesses started to slow down

when he went into kindergarten (he was almost 6 then). He is in 6th

grade now, and when he gets sick, it is still more critical then the

typical kid, but he really doesn't get " sick " that often. He is,

however, one of the more severe RSS kids, and has a lot of

complications due to his RSS, so we are always dealing with something!

Kim C.

> Welcome to the group. Your story sounds somewhat similar to ours.

> My daughter was born at 27 weeks weighing 1 lb 3 oz. Also had

> oligohydromniosis, but was born early due to preeclampsia/HELLP.

> Her NICU stay was 98 days and she has had all sorts of illnesses

> and several spats with pneumonia. I have been told she would quit

> getting sick so easily as she gets older, but am still waiting on

> it to happen. She will be 4 in February. We have been doing

> growth hormone therapy for about a year now. Growth hormone has

> actually been approved for idiopathic short stature which basically

> means extremely short. I think it's only available to children

> below a certain percentile, 5th, I think not real sure though.We

> went through that same issue at first, but when doctor changed the

> diagnosis a little it was fine after that. Aubrey seems to stay

> around the same weight forever also. It was nice " meeting " you.

> Tonya

>

> grisellemontes wrote:

> Hi! I just want to introduce my son to this group. He was born

> premature at 28 weeks and weighted less than 2 pounds. I had too

> many complications during pregnancy including oligohydramnio and

> placenta abruption but despite all these complications, he was born

> relatively healthy, breathing by himself, etc. He stayed 68 days in

> NICU until we reached almost 5 pounds, but after that, he has been

> very healthy. He will be 4yrs old by the end of October but he is

> little, he is 22 pounds and 35 inches tall. Although he doesn't

> have any feeding problems, and he eats a lot, he doesn't gain much

> weight. I think he has been around the same weight for months.

> Last year he was diagnosed with SGA (Small for Gestational Age) and

> was supposed to start the GH therapy but our health insurance said

> that the therapy was not approved for SGA and we were unable to do

> it by ourselves been so expensive. The doctor said we can wait a

> little longer. We went to different doctors looking for guidance

> and help and recently he has been diagnosed with RSS. Now that the

> diagnose changed I hope that we can start with the therapy. He

> started school this year and he is very smart, he has been saying

> things like " I am tall " and now I am concern about his self esteem.

> I really hope I can manage that. I already contacted a psychologist

> for orientation.

>

> I found this web site looking for information about RSS and it is

> good to know that we are not alone and that we can share some of our

> concerns with other people. For now, I don't have too much

> information about what is going to happen and how we are going to

> manage this but at least I know a place where I can go for

> information and support.

>