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Dr. Bob is Robert Hsiung, MD,
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Posted by happyflower on October 20, 2007, at 22:03:17
In reply to Re: To Babblers » happyflower, posted by MidnightBlue on October 20, 2007, at 21:31:00
Well they took her off life support and only expected her to live for 1/2 hour, well she has been going for over 9 hours now and still looks good! She is still terminal but I am glad the mom and dad could hold her and have time with her like this.
Today was the first they even got to hold her. And now it is without all the hookups. She had on a pretty pink dress and now they put on pj's on her. They had to buy special clothes since she is so tiny only 4 lbs (full term) or else by doll clothes.The doctors are amazed she has hung on so long, she isn't even connected to O2. Who knows maybe there will be a miracle or something. I am just so happy for the parents, plus all the relatives have left so they have this time to themselves.
Posted by Phillipa on October 20, 2007, at 22:23:25
In reply to unbelievable ! Update, posted by happyflower on October 20, 2007, at 22:03:17
Happyflower no way they could have misdiagnosed her is there? I hope they did and this is wonderful. Love Phillipa
Posted by happyflower on October 20, 2007, at 22:28:47
In reply to Re: unbelievable ! Update » happyflower, posted by Phillipa on October 20, 2007, at 22:23:25
Yeah, I wish the was the case, but they tested her twice. You asked me earlier if she had some prenatal tests done, and she did, but nothing showed up. She has a lot of physical internal problems, but who knows? I am just happy they have this extra precious time. What a blessing.
Posted by Phillipa on October 20, 2007, at 22:33:32
In reply to Re: unbelievable ! Update » Phillipa, posted by happyflower on October 20, 2007, at 22:28:47
Happyflower I will hope for a miracle. Love to you, baby, Daughter and rest of family. Phillipa
Posted by LittleGirlLost on October 20, 2007, at 23:06:41
In reply to unbelievable ! Update, posted by happyflower on October 20, 2007, at 22:03:17
awww :*)
What a blessing! Sounds like little 4lb Baby Lia is quite a fighter. Glad her parents were able to have this extra, precious time with her.
~LGL
Posted by Dinah on October 21, 2007, at 10:08:46
In reply to unbelievable ! Update, posted by happyflower on October 20, 2007, at 22:03:17
I'm so glad they have this extra time with her, and are able to hold her. I can imagine how comforting that must be, in the midst of all that's happened.
Posted by happyflower on October 21, 2007, at 10:25:38
In reply to Re: unbelievable ! Update » happyflower, posted by Dinah on October 21, 2007, at 10:08:46
She made it through the night and they might let her come home with her (3 hour drive). They would need hospice 24 hours at home though. If she come back home I might go and see her. It will so hard but I think it would be good for me maybe. The doctors believe because of human touch and holding her, is helping her fight for her life. I am so exhausted right now.
Posted by annierose on October 21, 2007, at 11:21:12
In reply to Re: unbelievable ! Update, posted by happyflower on October 21, 2007, at 10:25:38
Are they able to feed her? The mother must have so many feelings all tangled up. I can't even imagine what is floating through her mind. Post-partum is difficult enough. My prayers are with this family.
Posted by rskontos on October 21, 2007, at 13:59:07
In reply to Re: unbelievable ! Update, posted by annierose on October 21, 2007, at 11:21:12
Happyflowers, my thoughts and prayers are with you too. What a nice and wonderful unexpected turn of events. A blessing for the young parents and your family. I will keep all of you in my prayers!!!! I know you are exhausting but hang in there!
(((((((((((Happyflower)))) ((((BabyLia and Her Family)))))))))))))
rk
Posted by happyflower on October 21, 2007, at 16:04:22
In reply to Re: unbelievable ! Update, posted by rskontos on October 21, 2007, at 13:59:07
They are on their way home so we are go to meet her and her husband at home. I hope they make it okay home it is a 4 hour ride. It will be so hard to hold her, it is just so sad. But I am going to do it anyways. Thank you everyone for all your support.
Posted by LadyBug on October 21, 2007, at 18:15:32
In reply to I am going to see her tonight, posted by happyflower on October 21, 2007, at 16:04:22
I wish you well Happyflower. You and your family will continue to be in my prayers. May her sweet spirit live on in all your lives forever.
Thanks for the updates. I check every time I come on line. I pray for the best outcome for all.
Hugs and Love,
LadyBug
Posted by Raindancer on October 21, 2007, at 18:22:56
In reply to I am going to see her tonight, posted by happyflower on October 21, 2007, at 16:04:22
Happyflower, how wonderful that she will be touched and held by those who love her best. My thoughts and prayers to you all.
Posted by happyflower on October 21, 2007, at 19:55:35
In reply to Re: I am going to see her tonight » happyflower, posted by Raindancer on October 21, 2007, at 18:22:56
OMG was she so cute and so tiny. It is hard to tell how tiny she was in the pictures , but holding her was a gift I believe. She would look at me when I talked to her. My daughter changed her diaper and my husband fed her some pedialight drops. She was well aware of her mom's voice. I am so happy I got over the fear of seeing her, because I will never forget it. She was such a little doll.
I almost feel a sense of euphoria
of seeing her. I am at peace. I know the funeral will be hard but I am glad I had the chance to hold her in my arms and talk to her.I am playing 2 solo's in my next concert and one is already being in honor of my T, but the other one will be in memory of little Lia. Thank you everyone for letting me talk about this, and all your support and prayers, it has meant a lot to me.
Posted by happyflower on October 21, 2007, at 19:58:25
In reply to What a little precious angle!, posted by happyflower on October 21, 2007, at 19:55:35
Posted by Phillipa on October 21, 2007, at 20:05:08
In reply to What a little precious angle!, posted by happyflower on October 21, 2007, at 19:55:35
Happyflower she's still here right? Maybe that miracle will happen. Phillipa
Posted by happyflower on October 21, 2007, at 20:25:35
In reply to Re: What a little precious angle! » happyflower, posted by Phillipa on October 21, 2007, at 20:05:08
Yeah, they drove her home tonight from the hospital, but she is terminal. She is even having some trouble breathing. Her intestines, heart and stomach are all deformed, so she couldn't even eat without being in a lot of pain. I know you are hoping for a miracle, I wish too, I really do. Thanks Phillipa for everything, your emails and messages.
Posted by happyflower on October 21, 2007, at 21:12:59
In reply to Re: What a little precious angle! » Phillipa, posted by happyflower on October 21, 2007, at 20:25:35
This is what she has.
What are the characteristics of Trisomy 18?
The extra genetic material from the additional eighteenth chromosome can cause a variety of problems with varying severity. Just as children with Down Syndrome can range from mildly to severely affected, so can children with Trisomy 18. Therefore there is no hard and fast rule about what Trisomy 18 will mean for your child. However statistics show that there is a high mortality rate for children with Trisomy 18 before or shortly after birth.
Some of the typical characteristics of Trisomy 18 can include heart defects such as VSD (Ventricular Septal Defect - a hole between the lower chambers of the heart) , ASD (Atrial Septal Defect - a hole between the upper chambers of the heart), and coarctation of the aorta (a narrowing of the exit vessel from the heart), kidney abnormalities, omphalocele (a portion of the intestinal tract is located outside the stomach in a sac), esophageal atresia (the esophagus does not connect to the stomach, meaning the baby cannot eat by mouth), and polyhydramnios (excess amniotic fluid), clenched hands, choroid plexus cysts (a pocket of fluid on the brain that is not problematic in itself but may be a marker for Trisomy 18), rocker bottom feet, and delayed growth, micrognathia (small jaw), low-set ears, and a strawberry-shaped head, as well as severe developmental delays.
Posted by Phillipa on October 21, 2007, at 21:26:06
In reply to Re: What a little precious angel!, posted by happyflower on October 21, 2007, at 21:12:59
Happyflower will google it too as some can be fixed and have to see what it says about the others. Can you see how stubborn I am. I'm the most stubborn person I know. I know you know what you're talking about I'm one of those people who drive people crazy as they have to see if for themself before they will accept it. Love Phillipa
Posted by happyflower on October 21, 2007, at 21:44:56
In reply to Re: What a little precious angel! » happyflower, posted by Phillipa on October 21, 2007, at 21:26:06
It's okay Phillipa,
I did my share of looking it up too. Even if they do live longer it is with some severe mental and physical handicaps. I guess they did spot a possible spot on the brain during an ultrasound, but when they went to look again, it was gone. But that was a sign. I guess one of the problems of telling she is so small was because there was a lot of fluid in the mother, which is also a charactristic. I appreciate your williness to help and all your support. I guess I am having trouble accepting it and want a miracle. I am just thankful for the time I did have with her, many don't even survive birth. Maybe I will post a picture tomorrow, she really is cute. It makes me hold my kids a little tighter now. you just never know.
Posted by Phillipa on October 21, 2007, at 21:54:57
In reply to Re: What a little precious angel! » Phillipa, posted by happyflower on October 21, 2007, at 21:44:56
Happyflower I know I will stop googling and hope you post the pic tomorrow. And hope the little angel is at peace as I know she is with her parents and she saw you too!!!!Love and hugs Phillipa
Posted by Raindancer on October 22, 2007, at 7:07:10
In reply to Re: What a little precious angel! » happyflower, posted by Phillipa on October 21, 2007, at 21:54:57
Blessings on you Happyflower and little Lia and her mum and dad. Maybe her time on earth will be brief but she will have felt and known what it is to be a precious part of a loving family. Peace and love.
Posted by Raindancer on October 22, 2007, at 7:08:25
In reply to Re: What a little precious angel! » Phillipa, posted by Raindancer on October 22, 2007, at 7:07:10
Posted by Phillipa on October 22, 2007, at 12:15:45
In reply to Sorry above for Happyflower (nm), posted by Raindancer on October 22, 2007, at 7:08:25
Happyflower hope you are doing okay today just know my heart and thoughts are with all of you. Phillipa
Posted by llurpsieNoodle on October 22, 2007, at 13:56:08
In reply to Re: What a little precious angel! » Phillipa, posted by Raindancer on October 22, 2007, at 7:07:10
I am so glad you got to meet your angel. Warm thoughts for you in these difficult days
-Ll
Posted by RealMe on October 22, 2007, at 21:13:06
In reply to To Babblers, posted by happyflower on October 19, 2007, at 10:03:51
Happyflower
This is extremely painful for me to hear about, and so I am not reading the threads. I wanted children and could not have them. But, I just want you to know I am thinking of you as I know this all has to be so hard. Take care of yourself.
RealMe
This is the end of the thread.
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