|
Post by mumofnoah on Jul 11, 2004 21:41:41 GMT -5
|
|
|
Post by MaggiesMom on Jul 11, 2004 23:34:01 GMT -5
Praise the Lord! Now that he's getting better,maybe the cardiologists can see about getting that heart surgery going!
There's a group on Yahoo called ds-heart@yahoogroups.com I think some of those people may be able to help you get some information too. If that's not the right link, go to Yahoo and do a search in their groups for ds heart.
Take care of your whole family and give them lots of hugs!
Robin M - Maggie's mom
|
|
|
Post by justinsmom on Jul 12, 2004 13:10:21 GMT -5
Hugs and Prayers headed Noah's way and your family. Justin has VSD and as of 2 yrs ago his ASD has closed on its own. We were told that several times within a month period but as someone has mentioned before our kiddos are the strongest fighters and I strongly believe God watches over our little ones Personally. Although Justin was almost a month early he stilled weighed in at 8lbs 11oz, the question about repairing his heart was thrown out several times but after many many tests and retests it all came down to his pulmonary function which was very bad to say the least. They would give him medications to fix one problem which in turn ended up causing another problem from needing 2 blood transfusions to kidney complications. It seemed no matter what they did something else would go wrong. Also I have to agree with what someone else said with regards to questioning medical advice, we did many of times, right down to giving a resident a crash course in humanity 101, bedside manners 101 and a reality check, this happened while we were down stairs finally getting something to eat only to return and find Justin laying in the crib with blood from end of it to the other and the curtains covered in blood it seems they were attempting to draw an ABG- Arterial Blood Gas and just kept poking him until they got what they came for, well after seeing that and about to just grab him and get him out of there I went straight to the nurses station and told them to get the resident down here ASAP, aftrer informing her she was no longer to go near our son she had the nerve to tell me well I will be performing more ABG's on your son I'm all there is, my response this is a teaching hospital filled with compassionate, more qualified, more professional residents then yourself and that is who will be performing his tests. Case closed and we never saw her again and needless to say I had his nurse who we knew be with Justin everytime we were not able to and she watched them like a hawk. Oh by the way that resident did get a write up in her file Ok I'm rambling now but just wanted you to know we also have been there and Prayers are definitely headed your way, don't be afraid to question them
|
|
|
Post by shellk on Jul 12, 2004 19:31:47 GMT -5
;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D
I am so glad to hear that Noah is out of ICU....That is one tough little guy you got there....Still sending prayers you way..Hope he gets home soon...By the way how are your other little ones doing..? Any better?
Michele
|
|
|
Post by steffipoo on Jul 12, 2004 23:40:50 GMT -5
;D Thats the best news I heard in a LONG time!!! (((HUGS))) Steff
|
|
|
Post by Deannalee on Jul 15, 2004 23:27:26 GMT -5
I know I have responded to quite a few of your posts about Noah. Justin started off much in the same way. Justin was a monoamniotic twin. They were born 11 weeks early. Justin weighed 1 lb 14 oz and was 12 in long. Jordan was 2 lb 6 oz and 14 in long. They were identical twins with DS. I was told from 20 weeks on that Jordan would never live because he had developed hydrops. He made it to 29 weeks and lived 13 days after delivery. He is still a medical miracle to me because he beat so many odds for a very long time. Justin was plagued, and is plagued to this day with respiratory complications. Even on O2, he has desatted as low as 8% this past May. In Feb when he suffered hypoxia, they too told me they weren't sure if he would make it. I constantly have that fear because I lost Jordan. I forever hold out hope and faith that God has laid a protective hand on Justin. He did have trouble gaining wieght until Feb this year when they replaced his G tube with a J tube. He also had surgery May 28 to remove his tonsils, adenoids, part of his soft palate, and part of his uvula. He is still on O2 and the Dr is not sure if he will ever come off. He has put on sooooo much weight now with his J tube feeds that he is getting ready to start his 3rd calorie reduction tomorrow. PLEASE do not give up hope. Lift your son up to God. I have. I will put a link to my twins webpage so you can see Justin's pics of scrawny micro-preemie to plump butterball turkey. I hope these will inspire you and give you hope. God bless. www.babiesonline.com/babies/j/justinandjordanDeanna
|
|
|
Post by Jackie on Jul 16, 2004 7:56:50 GMT -5
Prayers and Hugs to Noah...and especially to YOU his mom...
Em was also born with heart problems (which miraculously self corrected in time) and Hirschprungs disease (no nerve cells in her colon) and in her first three days...had three surgeries...followed by an extensive one at 18 months to find the good colon....and I think this is what made our acceptance of her developmental problems so easy for us...we just wanted our baby to survive.
As you said ....God has a plan for Noah....just as he had a plan for Emily...although at the time I truly did not undestand why it seemed like bad news was just followed by more bad news. But now we celebrate in her great health... wonderful life and independence.....and trust that 24 years from now you can do this too....
Lots of love.... Jackie ..mom to Emily 24 and working in Houston
|
|
|
Post by Alice on Jul 16, 2004 8:29:44 GMT -5
I am so glad that a doctor was not right! WTG, Noah!
|
|
|
Post by momofrussell on Jul 17, 2004 18:29:45 GMT -5
BIG Hugs and prayers to you mumofnoah and Noah himself! I know this is a very rough time for the both of you. I pray God will watch over Noah and take good care of him. I am glad he is looking at the trees! I pray he gets to that valley beyond the trees too!
Hugs...
And Deannalee, thanks for sharing your story and your web site. It brought tears to my eyes reading your story and seeing your site...
Hugs to all of you!!
A.
|
|
|
Post by mumofnoah on Jul 19, 2004 20:39:24 GMT -5
The Dr has said that Noah can come home, which I am absolutely amazed at, happy about and scared at the same time. Apart from Noah's medical conditions he is doing great. The nurses have just started him on solids cause the bottles just aren't filling him up, (so if anyone's got any hints there, i would appreciate it). The Dr has also said that Noahs medical condition hasn't changed and their outlook for him is still grim but they need to send him home so he gets the stimulation of his family and we get to love him at home. Apart from all of this, I just found out last week that my Dad has had a stroke. He lives in a different state to us so I flew up and saw him this weekend (17-18 July). It was not a major stroke but he still needs to learn to do things all over again. This is way too much for me to handle. Just wanted to let you know the good news about Noah though. If you pray, keep praying. If you don't pray, start praying please.
|
|
|
Post by MaggiesMom on Jul 19, 2004 22:15:42 GMT -5
We'll still be praying for you, Noah, and your Dad. It sounds like you've really had a rough time. I pray that it gets better quickly!
Please do press on with getting a second opinion about Noah's heart condition. The time to act is now. I know it's all overwhelming, but doctor's do miss things.
Take care.
Robin M - Maggie's mom
|
|
|
Post by samanthajosmom_12 on Jul 20, 2004 2:43:49 GMT -5
i will say a prayer for you and noah and your father. sue
|
|
|
Post by Kristen on Jul 20, 2004 7:46:25 GMT -5
I am thinking of you! Question EVERYTHING and take NOTHING as the truth until it is proven. We did not have the situation you do, but when Carter was born, it was because the docotr who saw me every week and didn't question the problems I was having finally put on a sonogram and found ZERO fluid in the placenta with NO RUPTURE. I probably had a form of toxemia that he blew right past and that is what nearly killed him. Then they came in right after he was born after we were told he was just small and was going to be fine to tell us a laundry list of things wrong with him, only to find out that the DS was the only right thing - the three surgeries they were threatening were not necessary at all because physically/medically he is fine. A prognosis in an opinion you can take or leave (and I usually leave it!)
|
|
|
Post by Deannalee on Jul 20, 2004 22:42:15 GMT -5
I just wanted to let you know I am sorry about all your father is going through now, on top of everything else. I know this is like a double whammy and very stressful. I am glad, at least, that Noah is coming home. I would consider the second opinion option also. I have had too many Dr. Death's with Justin. I finally heard someone say something the other day....his nutritionist....that actually hit the nail on the head....She said Justin is simply an anomoly. No one can figure him out!!! He has been thrown soooo many curve balls and still manages to hit them right back!!! I am praying that Noah will also be an "anomoly" and prove everyone wrong!! Please take care. Prayers are still coming from here!!! Deanna
|
|
|
Post by SuziF on Aug 3, 2004 16:42:00 GMT -5
You need to grab yourself a copy of "Walk on Water" by Michael Ruhlman. It's an inside look at Pediatric heart surgery. There are doctors out there who won't give up on Noah. ~We take Meri in for her pre-op appt tomorrow & hopefully surgery will be next Tues (ASD)
Suzi
|
|