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Post by dannysmom on Aug 20, 2005 21:51:40 GMT -5
I would be first in line to buy a book by Debbie. I love to read her posts and responses. Debbie, if you see this posting....please write more. I love to read what you have to say.
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Post by dannysmom on Aug 1, 2005 20:56:31 GMT -5
I wanted to take this time to thank everyone who has taken the time to read and respond to my postings. I am a new mom to all of this and all of your words of wisdom and encouragement did wonders for me.
We are leaving tomorrow to head into Boston for my son Daniels surgery to repair his AV Canal defect.
Please know how much I appreciate everything and please keep us in your prayers.
I will be sure to post when we return to hopefully deliver good news.
Thank you all!!
Lisa
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Post by dannysmom on Jul 29, 2005 19:54:25 GMT -5
I have read alot of postings about feeding tubes and reflux. Over the last week or so (my son is 7 weeks) he has spit up maybe 5 times and thrown up whatever he ate. (i pump breastmilk and put it in bottle with formula to add calories). I thought these instances were due to not getting a good burp. However, since it has happened several times, and I have read alot of postings about reflux, I was wondering if he could have it.
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Post by dannysmom on Jul 28, 2005 22:30:21 GMT -5
Hi everyone,
Thanks for all the feedback. I didn't really think it was related to ds but since I had never heard of it before...figured I would ask.
Danny is doing great, I went to Boston today to donate blood for his surgery which is 1 week from today (Aug 4th). He is up to 9lbs 8oz and is 7 weeks old.
Thanks for all the support, this is a great website.
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Post by dannysmom on Jul 28, 2005 19:54:11 GMT -5
Hi,
I was wondering if anyone has heard of this or had it happen to them....
I had a routine ultrasound at about 8 weeks to validate my pregnancy (I had it so early due to prior miscarriage as well as severe morning sickness). During the ultrasound, the tech said everything looked great, saw the heartbeat etc. When I went to the doctors shortly afterwards, he told me that he reviewed the pics and I had a vanishing twin. He explained that my pregnancy began as 2 but I miscarried one. I never bled due to the other one surviving.
At week 19 I had a level 2 ultrasound and that showed no abnormalities. I had another at 34 weeks and once again showed nothing. I gave birth on 6-7-05 to my son with ds.
Has anyone heard of this twin thing and do you think it relates to ds at all or just a weird thing.
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Post by dannysmom on Jul 27, 2005 22:08:46 GMT -5
The little boy on the cover is his son. LisaRI, do you know what he died from?
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Post by dannysmom on Jul 27, 2005 22:07:16 GMT -5
Yes, he gave it to me when he came to the hospital. I have almost finished it. He also gave me "You will dream new dreams" That one is great too. One interesting thing he told me was Emily Kingsley who wrote Welcome to Holland is a personal friend of his. He gave me that poem in the hospital along with the books and it touched me and my husband so much at a time that we were so dazed and confused (we didn't know my son was going to have ds)we changed my son's middle name from Nicholas to Holland.
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Post by dannysmom on Jul 27, 2005 21:57:49 GMT -5
The small world that it is...I am also named Lisa and from RI and also see Dr Pueschel!! I just emailed LisaRI. I am dannysmom. My son saw Dr Pueschel a few weeks back. What an amazing man. He is brillant, kind, understanding...I couldn't say enough wonderful things.
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Post by dannysmom on Jul 27, 2005 18:15:20 GMT -5
Many,
Seems like we are going through the same thing pretty much at the same time. I would love to chat via email. my email is lisa@solutionsri.net.
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Post by dannysmom on Jul 25, 2005 21:49:05 GMT -5
Chris,
I am so glad to hear she is doing so well now. It is such an ordeal to go through, but to hear that kids make it through and are thriving is what keeps me going. I asked the cardiologist what would happen if we didn't have the surgery and her answer was something I can't even think about.
Hopefully some day I can share my success story. I thank everyone for being so kind in sharing their stories. I want everyone to know it has really helped me in dealing with all of this.
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Post by dannysmom on Jul 25, 2005 11:28:53 GMT -5
Valerie, Thanks so much for the feedback, finding this site has helped me so much!! Such wonderful people taking the time to talk to me and help me through this. It is amazing!!
I wonder why your Alethea is waiting until 3 years old. My husband has been worried that they are doing my son's surgery too soon but the cardiologist assures us that it isn't. I know when he was born, the told us they would do it before 6 months old. We have seen the cardiologist several times and she always says how my son is doing great. He was born at 7pds 6 oz and is already up to 9pds 1 oz. so he is steadily gaining weight. She did say that they prefer to do the surgery in the summer to give them time to heal before the flu season starts. What feedback have you received from your docs on when / why she will be 3?
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Post by dannysmom on Jul 24, 2005 21:57:42 GMT -5
Thank you so much for the support. I feel so much better tonight hearing of your success stories. I just keep praying that he makes it through and it is a success. I have learned so much over the last 7 weeks, it is a bit overwhelming but at the same time I feel blessed to have such a beautiful son. I can't wait until this surgery is over so we can begin enjoying him more and more. We try to make every day a good one...but we really can't go out and do too much because we are afraid of him getting sick before surgery. Thank you again for the feedback.
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Post by dannysmom on Jul 24, 2005 20:57:48 GMT -5
Kelly,
Wow mom of six!! You must be busy. I have 2 but sometimes my daughter who is 2 1/2 talks so much I feel like I have 6!! Thank you for sharing the pictures. My husband and I don't know what to expect and it does help to see it. Your son looks so healthy and happy, it is nice to see. Thank yo for sharing them with us.
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Post by dannysmom on Jul 24, 2005 20:49:33 GMT -5
Heather,
Thank you so much for the reply. Dr Mayer is our surgeon too!! What a small world. We were very concerned about who was going to do the surgery but our cardiologist spoke very highly of him and now to hear from you...puts me at a little more ease. The surgery is scheduled for Aug 4th so it is right around the corner. I am dreading the day but at the same time looking forward to it. My son is doing very well but tires so easily after feedings. He has never turned blue but I can tell he is getting a bit weaker. He used to suck with more force than he does now. I used to get 16 sometimes 17 ounces..but lately I have had some 12 and 13 ounce days. I can't wait to have the surgery to see how strong he hopefully will be. It is so nice to hear that your daughter is doing so well. You said you were home in 5 days? I hope we are too. My daughter is 2 1/2 and it is going to be difficult to be without her for so long (my mom will be taking care of her). Thank you so much for taking the time to reply. It is comforting knowing others have been through this. My husband and I sometimes feel so alone because we know no one else in our situtation. I didn't know until I had my son that he had DS and a heart defect. It has been alot to handle but we are doing our best. Thank you again, I really appreciate the feedback.
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Post by dannysmom on Jul 24, 2005 19:33:38 GMT -5
Glad to hear your son is doing well!! The doctors do make it seem so routine...but like you said..when it is your child it doesn't seem routine at all. It seems overwhelming when I think about it. I don't know how I am going to hand him over to doctors so then can work on his heart. I am still in shock over this whole thing.
This all takes so much getting used to. I didn't know I was going to have a son with DS. My prenatal tests did not show anything wrong..so we were shocked. My husband didn't know what DS meant and fainted in the delivery room ( ( had a c section so I didn't know what was going on). He thought the baby was going to die right then and there. But now that we are catching our breath..it is all sinking in. I am hoping once the heart surgery is over, we can finally have that joyful moment we lost in the delivery room. I mean we are thrilled to have our son, but the shock of DS along with major heart defect was alot to take in.
On a brighter note, he has no other difficulties at this time. He latched right onto breast feeding and the bottle. He is slow to feed but drinks about 15 ounces a day (we fortify the milk with formula and polycose to add calories). He rarely spits up if ever. He is a sleepy baby but is already holding his head steady at only 7 weeks. We have even had a few smiles.
I know this all takes alot of getting used to. I love this site because so many of my feelings have been written about by other moms. Thanks for the support and I look forward to chatting more.
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