heart surgery

[Guest guest]

My goodness. We will also be praying for Noah.

Sharon

Heart Surgery

Noah will also be having heart surgery on Wednesday the 16th at Denver

Children's Hospital. We will b praying for Shelby and Noah!!

mom to 12 and Noah 4 both with Down syndrome

Colo.

Some of you may remember back in March, when my daughter Shelby's heart

surgery was canceled the day before the procedure. Well, after a lot of

research

and thought, we have rescheduled the surgery for this Wednesday, June 16, at

Children's Hospital of Philadelphia (we live in Northern Virginia). We feel

much more at peace this time around, even though it will be very tough being

away

from our other two younger children.

Please remember Shelby and our family in your prayers this week as we go

through this very difficult time. Thank you for your thoughts and support!

Sandi Long, Mom to Shelby (6 w/ DS), Stuart (2yrs) and (16mos), wife

to Rob

[Guest guest]

,

Yes, we will keep you and Noah in our prayers as well. This is the first

time that two kids on the list have had heart surgery on the same day!

Please let us know how he does whenever things calm down and you can get

back on the pc.

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[Guest guest]

I'm so sorry to hear of Ethan's heart problems. We had A/V canal defect

repaired at 4 months with my son, Noah. He came home five days after

surgery with a bottle of Tylenol! I was shocked at how quickly he

recovered. Of course all surgeries/children are different, but I will pray

your nephew has the same great outcome. Noah is now 12 and doing great. He

sees a cardiologist every two years and they say the repair should last a

lifetime. That's good news, as he is out in the pool right now, and I can't

imagine tying him down to a hospital bed long enough for the sutures to

heal!

Is you sibling doing OK after the birth? Did they have a prenatal diagnosis

or was it a surprise? We were surprised, and it can take a while to get

over. That is natural, but hopefully they will just get on with the

business of raising a newborn and let the DS have the back burner for now.

Please let them know we are all here for them.

All the best to you and your Nephew.

Karla in Texas

heart surgery

> My nephew, Ethan born 04/09/07, saw his cardiologist this week. We knew

> he had 2 holes in his heart. We now found out that he also has bad

> valves and blood is leaking into his lungs. The doctor gave him meds to

> dry up his lungs. We are going to Michigan to see him next month. The

> doctor thinks he can hold off on surgery until after our visit. Has

> anyone's baby had this type of heart problem and what can we expect

> with his recovery? Theresa

>

>

>

> Click reply to all for messages to go to the list. Just hit reply for

> messages to go to the sender of the message.

>

[Guest guest]

I can only hope since you're in Michigan you're going to the Univ of

Michigan Children's Hospital because the number 1 surgeon is in Ann Arbor -

Ed Bove. His partner is extremely good too. Our daughter's surgery was

there and we couldn't have had better care. Her heart situation was

terribly tenuous (she was given a " less than 10% chance to survive), but she

is a thriving 11 year old.

The other thing we were told is children with ds, for some reason, do better

recovering afterward than typically developing children.

I hope this is helpful.

Eleanor Green

heart surgery

My nephew, Ethan born 04/09/07, saw his cardiologist this week. We knew he

had 2 holes in his heart. We now found out that he also has bad valves and

blood is leaking into his lungs. The doctor gave him meds to dry up his

lungs. We are going to Michigan to see him next month. The doctor thinks he

can hold off on surgery until after our visit. Has anyone's baby had this

type of heart problem and what can we expect with his recovery? Theresa

Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

[Guest guest]

Our Allie(5DS) had AV canal defect surgery at Childrens Hospital in Detroit and

is doing great. Home after 5 days. I have a hard time keeping up with her as she

is always going. Won " t go to bed till usually 10:00 and is usually up no later

than 7:30. Where does she get all her energy? I'll be 53 in a month and she is

killing me lol.

-------------- Original message ----------------------

From: " faithoftheheart58 " <faithoftheheart58@...>

> My nephew, Ethan born 04/09/07, saw his cardiologist this week. We knew

> he had 2 holes in his heart. We now found out that he also has bad

> valves and blood is leaking into his lungs. The doctor gave him meds to

> dry up his lungs. We are going to Michigan to see him next month. The

> doctor thinks he can hold off on surgery until after our visit. Has

> anyone's baby had this type of heart problem and what can we expect

> with his recovery? Theresa

>

>

[Guest guest]

>

> my name is corinne, my baby girl christina is 9 months old. one month ago she

suffered a global hypoxic brain injury. we have had no treatment as of yet. we

feel so lost in this big ordeal. she was born with heart defects, and has had 2

open heart surgeries. we are looking for any information that we can get

>

hi i feel for you. i have a 5 yr old global delay because of a mistake from

heart surgery. where are you located

[Guest guest]

Nic had a complete AV canal defect.Atrioventricular (AV) canal defect is a

large hole in the center of the heart. It's located where the wall (septum)

between the upper chambers (atria) joins the wall between the lower chambers

(ventricles). This septal defect involves both upper and lower chambers.

Also, the tricuspid and mitral valves that normally separate the heart's

upper and lower chambers aren't formed as individual valves. Instead, a

single large valve forms that crosses the defect in the wall between the two

sides of the heart. He also had an addition ASD. All of these were corrected

at 11 weeks of age. He was in the normal birth range. The defect went

undiagnosed for several weeks. I knew something was not right but after 5 Dr

checking him (only listening with a stethoscope) and all saying he was fine,

I took it upon myself to schedule an appt with a pediatric cardiologist. The

surgeon wanted to wait until at least 4 months of age but Nic slowly began

losing weight even after attempts to " bulk " him up. We tried adding

different oils to his formula (he wouldn't nurse-it was too tiring for him),

then moved to an NG tube. His stomach wasn't used to the amounts of formula

they prescribed and he began passing blood in his stools-it was a mess (the

situation, that is) Finally they bumped up his surgery. He spent about 10

days total in the hospital. The first day they did the catheterization, the

next day was the surgery. He spend 4-5 days in PICU then a few days in SCU

then to a reg room. He had ECHOs done every day and xrays every couple of

days.

If you have any other questions feel free to ask.

Di

Heart surgery

> My 3 month old, n has a vetricular septal defect, as well as a defect

> in one of his valves. The plan is for him to have surgery very soon at 6

> months the latest. Because of his heart condition he weighed 3lbs 12 oz at

> birth and is very slowly growing. I was wondering if anyone has gone

> through something similar.

>

>

>

> ------------------------------------

>

> Click reply to all for messages to go to the list. Just hit reply for

> messages to go to the sender of the message.

[Guest guest]

Hi.

Our son, Alden, also had a complete AV canal repair at 6 mos.  There were 4

major repairs. He did have to have a pacemaker placed at 11 mos. following the

surgery.  This is not always the case and it is amazing what they can do

repairing these defects.

What hospital are you near?  I will keep n in my prayers.  We also began

gathering blood donations for Alden and raised a lot of extra donations.  A lot

of people that knew him wanted to donate their blood for his surgery.  Those

that were not a match, donated to the blood bank in general.

It is quite an experience.  Too much for me to put into words here.  Alden was

full-term but small and also had to be " beefed up " via ng tube but that tube was

in so long and there were always NPO on his records so we ended up with a G-tube

at 11 mos. also and have had a lot of feeding issues.  I think that this is

something to be aware of because the longer they are not using their mouth to

drink/eat the more trouble they have later with feeding.

Contact us anytime with questions or just for moral support.  Others here may

not have experienced heart surgery but have experienced hospitalizations, red

tape, therapy needs, etc. and this is a great group of support people.

My best to you and little n.  Kiersten

From: hndz_a <hndz_a@...>

Subject: Heart surgery

Date: Friday, September 4, 2009, 11:45 AM

 

My 3 month old, n has a vetricular septal defect, as well

as a defect in one of his valves. The plan is for him to have surgery very soon

at 6 months the latest. Because of his heart condition he weighed 3lbs 12 oz at

birth and is very slowly growing. I was wondering if anyone has gone through

something similar.