River
Pearl Clutcher
Posts: 3,500
Location: Alabama
Jun 26, 2014 15:26:04 GMT
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Post by River on Aug 5, 2020 17:21:45 GMT
Congratulations on your sweet granddaughter!!
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Post by pierkiss on Aug 5, 2020 17:24:07 GMT
Congrats on your new grand baby! That’s so exciting, you must be over the moon! 😍
I have a friend who had a baby with a cleft lip and palate. She has had a couple of reconstructive surgeries. Which worked beautifully. There’s a tiny little scar on her lip and that’s it. She did need to have physical therapy to teach her how to suck and how to eat, and she receives speech therapy still. She is 7 years old now.
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Post by quinlove on Aug 5, 2020 17:26:58 GMT
Welcome to the Grandma Club ! Best club there is !!
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Post by katniss on Aug 5, 2020 17:27:46 GMT
Congratulations. My son (21) was born with a cleft lip and cleft palate. Along with other craniofacial deformities. After many surgeries and speech therapy he’s doing great. Please message me with any questions you may have. I know this is a scary time.
Jen
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Post by Darcy Collins on Aug 5, 2020 17:33:48 GMT
VSDs vary tremendously. My son was born with a minor one that did not require any surgery and eventually closed - I want to say around 4 or 5? Other than semiannual monitoring it didn't require anything. My cousin's son had to have surgery when he was a few months old. He's done great and has an active healthy life. Best wishes to you and your family as you navigate her medical challenges.
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Post by Linda on Aug 5, 2020 17:52:06 GMT
Congratulations!
Prayers for your GD and her parents - it's scary to be facing the unknown with a brandnew baby. Medical science is wonderful though.
I'll agree with those encouraging photos - yes - have them take some to share that don't show her mouth if they aren't comfortable but take some that do also - to show the progress (it'll likely be multiple surgeries) and because she'll want to see them in future (and her parents may also).
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Post by heckofagal on Aug 5, 2020 18:05:56 GMT
CONGRATS! My nephew was born with a hole in his heart that was repaired and he is now fine and very active and in his late thirties. He was also born with clubbed feet so he has faced some issues.
My DD was born a month early and with a cleft lip. No delays leaving the hospital and she had surgery at 6 weeks to repair the cleft and then again at 3 years old to revise the repair a bit. She has yearly visits to the cleft lip clinic at the children's hospital where she saw a team of doctor's that made sure she did not have any unaddressed issues. Surgeon, dentist, orthodontist, speech pathologist...I think she saw 6 different specialist but I can't remember them all. Oh, we also spoke to a genetic specialist and she told us we had more of a chance having a baby with Cystic Fibrosis than of having another child with a cleft lip. Thanks, give me something else to worry about! (Our second DD had neither.) She's 24 now and most people can't even tell she had a cleft lip, though it seems to be more noticable in pictures.
Best of luck to your new grandbaby!
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scrappinghappy
Pearl Clutcher
“I’m late, I’m late for a very important date. No time to say “Hello.” Goodbye. I’m late...."
Posts: 4,306
Jun 26, 2014 19:30:06 GMT
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Post by scrappinghappy on Aug 5, 2020 18:25:17 GMT
Congratulations. You can hear the love and pride in your voice and I wish you and your family many wonderful years together. Congratulations! She is a miracle to be celebrated. Her looks are unimportant. I know that this is secondary to her medical issues, but I would encourage photos to be taken of her from the side, swaddled, her feet, just her head and eyes... the parents will still want photos someday and they can share those photos without feeling like their daughter is on display. We will pray for your little granddaughter! Agree. There are lots of wonderful poses that still protect the privacy of the baby. lots of ideas if you look at celebrities (https://www.cnn.com/2020/08/03/entertainment/bella-twins-babies-trnd/index.html). Include parts of the parents in the photo to give context to how small she is, perfect fingers and toes, etc.
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Post by bc2ca on Aug 5, 2020 18:28:40 GMT
Just want to add my congratulations!
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Post by Spongemom Scrappants on Aug 5, 2020 18:35:39 GMT
Congrats to you grandma! I recently joined the first time grandparents club too and nothing could be sweeter.
I've have friends deal with both those diagnoses in their children. Those kids are now healthy, happy, and blazing a trail through life. Your little granddaughter will be too!
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Post by pjaye on Aug 5, 2020 18:36:39 GMT
Congratulations! I don't have personal experience of either, so no specific advice to offer. However I did read a lovely article a few months ago from a mother talking about her daughter with a cleft palate...I looked but I can't find it now. I'm pretty sure this was her on instagram, and she shares lots of photos of her lovely daughter and it's definitely worth reading her comments as well www.instagram.com/katrina_connell/
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Post by stampinbetsy on Aug 5, 2020 18:39:46 GMT
My son was born with tetralogy of Fallot, which includes a VSD, among other things. He had surgery when he was 5 months old. He is now 21. I was pretty devastated by this news (and especially the way I was told), but once I had some info and a plan, I was ok.
The good thing about a VSD is that is is a farily easy fix most of the time. Not sure what to say about the small aorta, but I'm sure the cardiologist and surgeon will have a plan.
Congrats on the grandbaby!
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Post by Really Red on Aug 5, 2020 18:47:15 GMT
WOOO HOOO! Congratulations! VSD isn't what it used to be in terms of repairs. My daughter has Tetralogy of Fallot and had to have OHS (twice so far). It is terrifying for those of us who wait outside, but there are so many choices these days that it isn't so awful. I am not certain about VSD, but I am not sure that your GD would need OHS for that. I rather doubt that they'd leave it in this day and age although they may wait and see if it closes up on its own. A cleft palate is scary for a parent, but again, surgeries make it such a minor thing. I know your DIL must be devastated because breast feeding is difficult (impossible?) and it's too much to deal with after giving birth. But in a few months, hopefully, this will all be behind her and things will get better for your DIL. I'm sorry you can't be there
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Post by brynn on Aug 5, 2020 19:11:59 GMT
Welcome to your granddaughter!! Congratulations to her family on her arrival!!
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kibblesandbits
Pearl Clutcher
At the corner of Awesome and Bombdiggity
Posts: 3,305
Aug 13, 2016 13:47:39 GMT
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Post by kibblesandbits on Aug 5, 2020 19:15:34 GMT
Awww, I'm sorry your DIL is feeling so badly. Such a shock. Didn't ultrasound highlight the deformity? Would have given her a minute to adjust. My niece has VSD, and it was a bit of a rough start but she's a go-getter now. Cardiac treatment has come so far. Hopefully the cranio-facial surgical team will work their wonders too. Congratulations! Being a grandma is super fun! yes, but it was thought to be very minor. Turned out ALOT worse than originally thought. Awwww, I'm so sorry. Love Basket1Lady's suggestion for the photos.
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Post by katyscrap on Aug 5, 2020 19:25:34 GMT
Thank you all so much for your personal stories and advice. They are so reassuring to me and I appreciate you all taking the time to respond.
I just facetimed them and she is doing great!!!
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Gravity
Pearl Clutcher
Posts: 3,229
Jun 27, 2014 0:29:55 GMT
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Post by Gravity on Aug 5, 2020 19:30:36 GMT
Congratulations on your new granddaughter!
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Post by stargazer on Aug 5, 2020 19:36:24 GMT
Congrats on your granddaughter xx My bff’s dd was born with a cleft 18 years ago (3 days after my dd). She had only a tiny bit of palate involvement but lip/nose was clear to see. She had an operation at less than a week old which was remarkable in changing/improving things & she never had any issues feeding (she was breastfed other than a few days around the op). Over the years she’s had 1 or 2 (can’t remember!) other ops due to growing. She’s had to be under the care of an orthodontist but has lovely teeth. You would never know that E had any issues now (in fact you’d wouldn’t have been able to tell within a matter of weeks of that first op). Not sure how her heart issues may complicate timelines but it’s our experience that they will operate quickly on the cleft issues. We knew that E was going to have a cleft & it was still a bit of a shock to see her (especially as we had our 3 day old dd next to her) so if your DIL didn’t know about this ahead of time I imagine it’s a lot to get her head around. Try to make sure that she does have pictures of her now though because she’ll want to look back on how far they’ve come & your granddaughter will want to see how she looked. My own dd saw a pic of E & her within their first week a couple of years ago & was staggered because obviously she had no recollection.
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Post by stormsts on Aug 5, 2020 19:38:11 GMT
Congratulations and welcome to the club! No experience with any of her issues but I am sure she is getting the best care. I’m sorry you can’t be there in person but isn’t it great we have the technology like FaceTime!
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Post by mom on Aug 5, 2020 19:42:05 GMT
Congratulations! Our daughter had VSD and a small aroma (among many other issues). They took a 'wait and see' approach. Try not to worry too much about it...that diagnosis isn't a guarentee of heart surgery.
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Post by papersilly on Aug 5, 2020 20:56:24 GMT
congrats on the new baby! i think surgery for cleft palates have advanced so much that you can barely tell it even happened in the first place.
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Post by epeanymous on Aug 5, 2020 21:07:54 GMT
Congratulations, grandmother!!
A former student had a baby who was born with a cleft palate. He had a series of surgeries and you wouldn’t even know he had one in the first place. She does advocacy now (primarily to raise $$ for surgery in countries where it’s less accessible), and at least from what she has said, that is generally the outcome if you have access to appropriate medical care.
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Post by crazy4scraps on Aug 5, 2020 21:35:28 GMT
Congrats on the new addition to your family! Sending good vibes that her medical issues are resolved completely.
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ddly
Pearl Clutcher
Posts: 3,946
Jul 10, 2014 19:36:28 GMT
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Post by ddly on Aug 5, 2020 21:40:34 GMT
Congratulations on your new granddaughter! I’m sorry to hear about the health issues.
Hugs!
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Mystie
Pearl Clutcher
Posts: 4,299
Jun 25, 2014 19:53:37 GMT
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Post by Mystie on Aug 5, 2020 22:07:23 GMT
Congratulations!!! What a mix of emotions for you all. And I'm sure you are wishing so much to be with them. I'm sorry there's pain with the joy.
I've known babies born with heart defects and I've known babies with cleft palates and they did so incredibly well with surgery. It really is amazing what they can do for these precious babies. I hope your granddaughter will get the very best care, and thrive.
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Post by revirdsuba99 on Aug 5, 2020 22:13:48 GMT
Jealous, I got 3 DGSs and you got a little baby girl to dress in frilly stuff. May she do well as they all face her surgeries.
((((((((((((((((((((((HUGS))))))))))))))))))))
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Post by AussieMeg on Aug 5, 2020 22:21:00 GMT
Congratulations on becoming a grandmother! Do you know what you want to be called yet - Grandma, Nanna, Granny or.....? I'm sorry that your granddaughter has some medical issues. It must have been shock to the parents. I can understand why your DIL isn't comfortable about sharing photos just yet, they're still coming to terms with things. Perhaps if she can see some "after" photos of other kids who have had reconstructive surgery for the cleft palate that might ease her worries. ETA: I just looked at the Instagram page that pjaye shared, and it's great! The mum has shared lots of photos of her gorgeous baby before the surgery. This is some of what she posted just before the reconstructive surgery:
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Post by gizzy on Aug 6, 2020 0:53:43 GMT
I don't have advice just wanted to congratulate you on your new grand baby!
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Post by freecharlie on Aug 6, 2020 1:22:02 GMT
Congratulations!!!
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Post by dizzycheermom on Aug 6, 2020 2:44:49 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
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