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Post by dizzycheermom on Aug 6, 2020 2:50:48 GMT
My first grandchild was born yesterday!!! She's perfect and beautiful and she has a headful of dark hair! She was born with VSD (ventricular septal defect) in her heart as well as a small aorta. They are meeting with the heart surgeon today to discuss the plan of action. From what I understand, the hole is her heart mixes blood with the oxygen that goes to her lungs. Also, she has a cleft lip and palate deformity. Her nose is unrecognizable and she has a split in her mouth. They are going to meet with a crainial facial surgeon today as well. I don't know how badly her palate is affected. My daughter-in-law is devastated and doesn't want any pictures of her posted. I think she's beautiful but I respect how she feels. I'm sure it is a big shock to see her. Has anyone had experiences with either of these medical issues? We love her so much and we are all worried about her. She's such a little fighter already! I have a nephew that was born with a cleft lip and palate. He has had 2 surgeries I think so far, and at 4 years old is doing well! One thing that helped esp early on was trying different types of bottles. They found one that you could squeeze and they had to cut the hole a little bigger. He had to be ready to eat or it was a big fight. I fed him many times and you get into the rhythm. Just hold the baby more upright and squeeze to shoot the breastmilk or formula to the back of the throat. For him it helped to have him swaddled tightly. The local hospital didn't seem to have a lot of experience but they ended up going to the DC Children's Hospital and that is where the surgeries have been. You can barely even see the scar now! Good luck! Feel free to reach out if you have any more questions!
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Post by tommygirl on Aug 6, 2020 2:53:44 GMT
Congratulations on a beautiful new grandbaby!! I have a friend whose child had cleft lip and palate issues and a different friend whose child had VSD. Both children are doing really well. I pray that your grandchild has a similar experience. Hugs to your son and DIL. I imagine the stress of dealing with a new baby with unexpected challenges is difficult to navigate. It sounds like you are being the supportive grandma from afar. I hope you can safely get those in-person snuggles from your new little one soon.
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Deleted
Posts: 0
Apr 20, 2024 7:10:02 GMT
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Post by Deleted on Aug 6, 2020 3:13:34 GMT
Oh and until age 3 I had monthly echos. Then until age 6 or 7 they were 4 times a year, then 2 times and then at age 10, yearly. At 18 it was get one every 3 years or as needed. I get them yearly just because I have POTS My daughter has POTS and hEDS Dd has POTS, hEDS, dysautonomia, CVID, and Reynauds. I have dysautonomia/POTS and am waiting to get in with UCLA for final hEDS screenings (I scored high just need to see genetics)
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Post by dizzycheermom on Aug 6, 2020 3:22:29 GMT
My daughter has POTS and hEDS Dd has POTS, hEDS, dysautonomia, CVID, and Reynauds. I have dysautonomia/POTS and am waiting to get in with UCLA for final hEDS screenings (I scored high just need to see genetics) oh man! Feel free to message me your name and I will add you on FB!
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ModChick
Drama Llama
True North Strong and Free
Posts: 5,060
Jun 26, 2014 23:57:06 GMT
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Post by ModChick on Aug 6, 2020 3:24:57 GMT
Congratulations on the birth of your first grand baby! Modern medicine is truly miraculous, first hand experience with a 26week preemie and the positive stories shared here should bring a small measure of peace and hope for your family I’m praying.
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Post by jenjie on Aug 6, 2020 3:25:54 GMT
Congratulations! Your love and pride for your precious granddaughter are coming through loud and clear. Have they chosen a name yet?
Praying for your little one. So glad to see so many pea friends sharing success stories!
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AllieC
Pearl Clutcher
Posts: 3,052
Jul 4, 2014 6:57:02 GMT
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Post by AllieC on Aug 6, 2020 3:27:57 GMT
Congratulations on your beautiful new grand baby. A friend of mine's son was born with a severe cleft palate/lip. He had some surgery at about 5 months and another around 3. You can't pick it now, the surgeons did an amazing job.
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seaexplore
Prolific Pea
Posts: 8,397
Apr 25, 2015 23:57:30 GMT
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Post by seaexplore on Aug 6, 2020 3:37:12 GMT
That is such a wonderful suggestion! I will second this, and if I can add another thought as well, I wish I'd taken better, closer up pictures of Dahlia's illeostemy. Now that she's all grown and put back together she's curious as to what it looked like, and I regret not taking pictures. I know, I remember at the time I didn't want any pictures. I didn't think it was 'pretty' to see her intestines sticking out of her like that, enough that I'd want pictures but now for DD's sake I wish I had. They are curious about their remarkable start in life, and save for a few bath pics where you can kinda see it I don't have anything. <big hugs> so easy for me to say this now that she's 14 though. Thank you for putting words to what I wanted to say. They photos don't need to be public. Take them and put them away. She will want to know when she is older. I would also say to take pictures after each surgery so that she can see the changes that are happening/happened.
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Post by iamkristinl16 on Aug 6, 2020 3:43:13 GMT
Congrats on the new grand baby!
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Post by lesserknownpea on Aug 6, 2020 4:24:23 GMT
I had a severe Atrial Septal Defect. They have improved what they can do to fix these things beyond what we could have imagined back when my family faced it.
I know your sweet granddaughter will be healthy and happy. Enjoy!!!
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Post by FrozenPea on Aug 6, 2020 6:36:07 GMT
Congratulations on your sweet new granddaughter!
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Post by Patter on Aug 6, 2020 10:07:48 GMT
Oh and until age 3 I had monthly echos. Then until age 6 or 7 they were 4 times a year, then 2 times and then at age 10, yearly. At 18 it was get one every 3 years or as needed. I get them yearly just because I have POTS My daughter has POTS and hEDS My daughter with the VSD also has POTS. Hugs to all of the POT kids and mamas.
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Post by piebaker on Aug 6, 2020 10:14:32 GMT
Congratulations on the birth of your grandbaby! When our first daughter was born, my mother-in-law turned into "Super Grandma!" Her love for our little one was fierce! I am sure you will be the same way.
Sending thoughts of healing for her medical conditions.
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sueg
Prolific Pea
Posts: 7,983
Location: Munich
Apr 12, 2016 12:51:01 GMT
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Post by sueg on Aug 6, 2020 10:46:00 GMT
Congratulations on your darling granddaughter. I became a first time grandmother to a precious little girl last year, and she totally stole my heart from day 1. Even though we live far apart, it fills me with joy to see her break into a huge smile when we 'chat' on facetime.
As to the medical issues - I have no experience with either though I have known people whose children overcame these problems. As others have said, medical science is so advanced these days that the outcomes are wonderful - better than the children I knew who are now in their 30s. It will be hard for the parents as they wait through all the surgeries, but their baby girl will not remember them.
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Post by compeateropeator on Aug 6, 2020 12:08:01 GMT
Congratulations on your beautiful sweet new granddaughter. I am so sorry that she has some medical issues, it breaks my heart to see Babies/children (and their families) having to struggle. I wish her all the best and loving thoughts are with you all as you maneuver through this fight. But again congratulations on your family’s wonderful addition.
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maurchclt
Pearl Clutcher
Posts: 3,613
Jul 4, 2014 16:53:27 GMT
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Post by maurchclt on Aug 6, 2020 12:47:05 GMT
Congratulations Gramma! I can already tell she is going to be the love of your life. I have no experience with any of the medical issues, but know that the drs. already have to plan. Prayers and good wishes being sent.
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Post by shescrafty on Aug 6, 2020 13:47:47 GMT
Congratulations on your new granddaughter! I am sure you are delighted! 💕💕💕
Medical issues are always scary, but it sounds like both of the issues will be treatable.
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Post by laurasw on Aug 6, 2020 16:22:24 GMT
Congratulations on your granddaughter!
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janeinbama
Pearl Clutcher
Posts: 3,170
Location: Alabama
Jan 29, 2015 16:24:49 GMT
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Post by janeinbama on Aug 6, 2020 16:44:25 GMT
Congratulations! Yeah for Facetime and so many advances in medical procedures. I'm sure you will be your granddaughter's biggest fan. God Bless Ya'll
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Post by katyscrap on Aug 6, 2020 16:58:47 GMT
Thank you again for sharing your stories. I feel so much better after hearing all the successes!
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Post by FrozenPea on Aug 6, 2020 20:44:58 GMT
Just read your update. Prayers for your granddaughter and her parents! And you too! ♥️
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Post by 16joy on Aug 6, 2020 20:53:36 GMT
Please don’t fret over the cleft. Have you seen the commercial featuring kids before and after the operation. If I see it again I will make a note and search on the web for it. The skills doctors have today is impressive.
I hope the source of infection is found soon so the heart plan proceed.
Best of luck to your family
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Post by MichyM on Aug 6, 2020 20:55:54 GMT
I just saw your update. I'm so sorry for all that your granddaughter and your entire family are going through. I hope things look up very soon. (((HUGS))) Oh and CONGRATULATIONS Grandma
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Post by ~summer~ on Aug 6, 2020 20:58:21 GMT
Hugs to you and your family.
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purplebee
Drama Llama
Posts: 6,725
Jun 27, 2014 20:37:34 GMT
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Post by purplebee on Aug 6, 2020 21:02:03 GMT
Congratulations! Will keep your precious little one in my prayers.
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Post by malibou on Aug 6, 2020 21:10:56 GMT
I'm sorry to hear that they can't do her surgery just yet. Hoping and wishing they get it figured out soon. I will continue to keep them safely wrapped up in my thoughts.
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Post by freecharlie on Aug 6, 2020 21:29:58 GMT
More prayers heading her way a d for your sin and your dil
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snyder
Pearl Clutcher
Posts: 3,920
Location: Colorado
Apr 26, 2017 6:14:47 GMT
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Post by snyder on Aug 6, 2020 21:32:50 GMT
Praying for your precious little grandbaby. May the doctors have wisdom to help her get better and stronger so that she can continue with the treatments she needs. Bless her heart. {{{{hugs}}}}
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Post by scrappinmom3 on Aug 6, 2020 21:45:46 GMT
Congrats on your granddaughter. Poor little peanut but I’m sure that they will get her healthy.
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ashley
Pearl Clutcher
Posts: 3,400
Jun 17, 2016 12:36:53 GMT
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Post by ashley on Aug 6, 2020 21:49:07 GMT
Congratulations!! I’m so sorry to hear she isn’t doing well. Sending much love and hope for all of you... This little girl was born to be a warrior!!
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