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Post by katyscrap on Aug 5, 2020 16:04:31 GMT
3/4 - I might be able to see Ava! They are trying to get permission to baptize her and see if they will allow one set of grandparents in. My DIL graciously said it could be us (my ex and I) since we are first time grandparents and live so far away. She has not been doing well at all, especially the last two days. My son said she’s been very pale, bleeding from her nose and mouth. The perinatal (?) dialysis that puts water into her belly then pulls out all the excess water doesn’t seem to be working anymore. They are going to try renal therapy, blood dialysis, that will filter out blood and replace her electrolytes but this has never been done on a baby with VAD (artificial heart thing). She also has been fighting an infection. They believe the yeast infection isn’t responding to the meds she has been given so far, so they are going to give her a heavy duty antibiotic but that will be tough on her already delicate kidneys. Also, part of her lung is dead. The tissue on the bottom portion of one of her lungs has died and they think it was from when the heart transplant was put in, the heart was too big for her and that is one of the complications. 3/2 - She hasn’t been doing too well. Lots of complications and set backs. She is hanging in. 1/13 - not much to report. She is stable and awake. 1/7 - her kidneys aren’t working and she’s retaining a lot of fluid so they are going to start dialysis. He said she’s really cold even though they have heated blankets on her. 1/4 - Ava went into complete heart failure this morning. They gave them the option to let her go or to try an artificial heart machine until she is strong enough to get back on transplant list. As it stands now, she wouldn’t survive a heart transplant. They agreed to try. At least they did everything they could to save her. He couldn’t even speak when he called me. My heart is breaking for him. Please pray. She turned 5 months old today. 12/28 - Ava went into cardiac arrest for the second time in four days. She was revived and is now on the Ecmo machine. They believe it was caused by the anti seizure medication. She is stable. 12/24 Forty minutes after the kids left the hospital last night they got called back. Ava went into heart arythmia and they don’t know why. She is back on the ECMO machine. She had been doing so good the last few days other than the high fever. I don’t know what this means. If there are any in the medical field who understands what this is and what it means as far as a heart transplant, can you explain? 12/14 she’s doing really good with the stent they put in the artery. Her new heart is too big and it was pressing on an artery causing one lung to fill up. This has relieved it. They will leave the sternum open until she grows into the heart. 12/6. Ava has a blood clot in her brain from the high levels of anticoaluants she is on. The heart isn’t working again. She’s in surgery. He is falling apart. I’m falling apart but I have to be strong for him. Please pray for her. I don’t even know what to pray for anymore. I want her to live but at what cost to her? She has known nothing but suffering and pain since she’s been born. 12/5 She just got out of surgery again. The heart kept getting fainter and fainter until the machine was doing 100% of the work, her kidneys still had not started functioning and the line in her shoulder that was supposed to be feeding the pain meds was not working because she woke up and became very uncomfortable. They were in a long time but got the heart started again and her kidneys are now functioning. This is so scary. I hope she turns the corner now. 12/5 post op. The heart still is very weak and her kidneys aren’t working either but they are hopeful the next couple of days she will improve. Her color is better and her skin is starting to warm up. 12/3 My son just called. The hospital just called that they have a potential heart for Ava! They are headed to the hospital and the doctor said she could be in the OR within a couple of hours. Please pray for Ava and my family and especially for the lost donor baby and his/her family. We will be forever grateful to them for their ultimate sacrifice. Hopefully, Ava will be able to live a long, healthy life now. 11/24 - Ava was doing good the last few days but today she had a really rough day. Lots of vomiting and her vitals are off. I’ll post a pic down below. Her nurse got her all pretty yesterday. 11/18 - my ex-husband started a gofundme to help out the kids. I'm not sure how to add a link. 11/16 - My son sent me a video of her. Her fingers are so blue, almost purple looking. I’ve never been so sad and terrified in my life. I hope she hangs on long enough for a donor. 11/14 - My son called me tonight. The doctors advised that Ava is going to need a heart transplant. They added her to the list as A1, which means top priority. Her heart is not able to pump enough blood and her hands and feet aren’t getting enough oxygen/blood? He said they are cold. They had been trying a medicine to see if it would help but it hasn’t so they made the decision tonight to get her added to the list. He said she was doing good but the last day or two, she keeps waking up inconsolable, either in pain or discomfort. He sounds ready to break. 11/13 - Ava has had a really good few days! She is gaining weight, she weighs 9 lbs now. She is getting more independent. She ripped out her NG tube from her nose twice so far. She has made it 100 days of kicking butt! (see pic). Thank you for the continued good thoughts and prayers for her and her parents. 10/19 - Ava coded yesterday. My son said she was purple and unresponsive. They bagged her (performed CPR?) and she came back. They don't know what caused it and the nurses said they were taken by surprise because she has been doing good lately. They think she may have choked from the secretions from her trache. I hope it wasn't her heart. I don't really know much other than that right now. My poor little baby. 10/14 - She is holding steady. They called in a second opinion for her heart and she may need a heart transplant. She is more alert and smiles now when they visit her. She is gaining weight now that they readjusted her feeding tube. She still has the trache.[/p]
9/17 - She has been having a lot of feeding issues. They had to take her off all but nutrient water for a few days then they introduce different formulas. No more breastmilk and they are trying to figure out something she can tolerate without bloody stools and vomiting. She lost 1/2 lb. Other than that, she is doing great! She is fascinated by the little music box thing that projects lights onto the ceiling and she loves to look at it. She gets mad when they shut it off, lol. They are hoping she will be able to go home in November. I would love to fly out and see her in December. Her next heart surgery is scheduled for January, then the first cleft/palate surgery will be March and the second one in May.
8/28 - She is awake and alert! We were so afraid she wouldn't be able to see because of the colomboma but they took her off sedation and she looks all around so we know she can see! They brought in a music box that makes a design on the ceiling as it plays. She is doing good with the trache. She did need epinephrine for her heart and a blood transfusion the other day but my son and DIL are thrilled to be able to finally interact with her and change her diaper after 3 long weeks.
8/21 - her chest was finally sewn up last night and today she has the tracheotomy put in. Her chest is all purple from the bruising but she is doing really great!
8/20 - she had the second part of her heart surgery last night. They left the chest open and will go in and do a third surgery today and then suture her closed. They prepared them that she may have to have a tracheostomy put in as well.
8/18 - She’s out of surgery. They left her chest open and they will finish with a second surgery tomorrow. She is stable and strong. She is having her heart surgery this morning, 11:30 EST. They have to switch around her aorta and pulmonary artery and patch up her aortic arch. My son sent me a picture and she is nice and comfortable. She has on little yellow hospital socks with the rubber on the bottom like like the adult ones.
She had a rough weekend after she got the ventilator removed so she has an oxygen helmet on and she has been on morphine to keep her comfy.
8/14 - ventilator is out and they got to hold her! First heart surgery is schedule for next Tuesday/Wednesday. Now that she is awake, hopefully they will test her sight and hearing soon. We are anxious to see if she has any vision or hearing.
8/10 - She was diagnosed today with CHARGE syndrome. It’s very rare and very scary. They are having a meeting with all the doctors, specialists and Genetists tomorrow. They are going to have a long road ahead of them. She already has the H, A, E for sure. We don’t know about the rest of the letters. Deafness, blindness, kidney issues, epilepsy, the more I read the more scared I get. She hasn’t opened her eyes because she’s been sedated. I’ll update more tomorrow after they meet.
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!
UPDATE 8/6 - She is too sick to do the heart surgery. They need to get her stabilized first. Poor darling, my son sent me pictures and she is just covered in wires and tubes but she has a big yellow bow on her head. Her bloodwork is not good and they are trying to figure out the source of the infection to treat it.
UPDATE 8/7 - PLEASE PRAY for baby Ava. They have her sedated and on paralyzing and pain meds. They had a geneticist come in and do testing as they think all these issues may be caused by some syndrome. We are waiting for some answers. Poor darling is so tiny, she's only 5 lbs, but she is a fighter!
UPDATED 8/10 - she is still on the ventilator and sedated. It was a quiet weekend. No better but no worse either. Thank you for your continued prayers.
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iluvpink
Pearl Clutcher
Posts: 4,255
Location: Michigan
Jul 13, 2014 12:40:31 GMT
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Post by iluvpink on Aug 5, 2020 16:07:11 GMT
Congratulations on your granddaughter!
I'm sorry to hear about the medical issues. I don't have any knowledge but I hope the best for her!
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Deleted
Posts: 0
Mar 28, 2024 14:06:46 GMT
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Post by Deleted on Aug 5, 2020 16:07:42 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! Me! I was born with VSD. I had a heart cath but the team decided not to close it. 42 years later and it is still there. It actually closed a tiny bit this past year.
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scrappert
Prolific Pea
RefuPea #2956
Posts: 7,653
Location: Milwaukee, WI area
Jul 11, 2014 21:20:09 GMT
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Post by scrappert on Aug 5, 2020 16:07:59 GMT
First, congratulations!! I don't have any experience with the rest, but I will pray the doctors will do what needs to be done so she grows up happy and healthy.
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Deleted
Posts: 0
Mar 28, 2024 14:06:46 GMT
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Post by Deleted on Aug 5, 2020 16:09:47 GMT
Some important points about VSD:
I get modeled
If I turn blue anywhere I have to be rushed to the ER
I have to take antibiotics for all dental work, procedures, surgeries and for both births as well as after birth for 24 hrs via IV
I was a super active kid, did not slow me down
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Post by katyscrap on Aug 5, 2020 16:11:27 GMT
oh wow! That is great to know and encouraging.
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Deleted
Posts: 0
Mar 28, 2024 14:06:46 GMT
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Post by Deleted on Aug 5, 2020 16:12:24 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
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Deleted
Posts: 0
Mar 28, 2024 14:06:46 GMT
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Post by Deleted on Aug 5, 2020 16:13:48 GMT
Yes mine was small enough that they felt the risk outweighed the benefit of open heart surgery.
Now there is a procedure they can do that is out patient with a patch.
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Post by fruitysuet on Aug 5, 2020 16:14:57 GMT
Congratulations on your new little grand-daughter. Your excitement is contagious.
I am so sorry to hear of the medical issues she is facing. I don't have any experience of either, but I hope that her parents get positive news from the different specialities and have time to gather themselves and get to the point where the joy and excitement of the baby is no longer over-shadowed by the issues.
Love to you all and best wishes to baby girl.
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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 16:17:13 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!
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Post by KikiPea on Aug 5, 2020 16:19:19 GMT
No experience here, but wanted to send congratulations, prayers and big hugs!
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Post by Basket1lady on Aug 5, 2020 16:23:11 GMT
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!
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hutchfan
Drama Llama
Posts: 6,034
Jul 6, 2016 16:42:12 GMT
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Post by hutchfan on Aug 5, 2020 16:23:15 GMT
Congratulations on the birth of your granddaughter! I will be saying prayers for her. My aunt adopted a little girl who was born with a cleft lip and she has had to have several surgeries but she looks really good, hardly even notice it all. She started the surgeries very early she in now 8 and I think she has just one more to go.
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Post by malibou on Aug 5, 2020 16:23:51 GMT
Congratulations on your first grandbaby. Wishing you perfect plans from the various medical teams she will be seeing.
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Post by scrapmaven on Aug 5, 2020 16:25:35 GMT
Congratulations. Try to remember that pediatric medicine has really advanced. Your little sweetheart will thrive and grow and be happy and will always be the love of her grandma's life.
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Deleted
Posts: 0
Mar 28, 2024 14:06:46 GMT
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Post by Deleted on Aug 5, 2020 16:35:28 GMT
Congratulations!!! Wishing her a strong body and spirit and excellent doctors, nurses, care and comfort.
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Post by katyscrap on Aug 5, 2020 16:47:54 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.
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Post by katyscrap on Aug 5, 2020 16:48:53 GMT
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! That is such a wonderful suggestion!
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Anita
Drama Llama
Posts: 5,628
Location: Kansas City -ish
Jun 27, 2014 2:38:58 GMT
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Post by Anita on Aug 5, 2020 16:49:16 GMT
Congratulations!!
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Post by katyscrap on Aug 5, 2020 16:50:31 GMT
She is across the country from me and will be in the hospital at least a month. Even when she is released, I don't know how long it will be until I can see her with the whole covid/plane thing. Thank goodness for facetime!
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oh yvonne
Prolific Pea
Posts: 7,989
Jun 26, 2014 0:45:23 GMT
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Post by oh yvonne on Aug 5, 2020 16:53:22 GMT
First off congratulations on your precious granddaughter. I so much feel for you all with this scary news. You don't ever imagine anything other than everything to be perfect and it's devastating when it's not.
I remember sitting by my tiny baby all hooked up to monitors and facing surgeries and feeling so scared and alone and envious of all the other healthy babies in the maternity ward. <hugs> my heart and prayers go out to you and your sweet grandbaby, and honestly today's surgery techniques are so advanced and its amazing what they can do to patch and make right again, it will be all okay, it will be.
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snyder
Pearl Clutcher
Posts: 3,885
Location: Colorado
Apr 26, 2017 6:14:47 GMT
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Post by snyder on Aug 5, 2020 16:59:23 GMT
Congratulations!!!!! I can tell how excited you are in your words. My cousin's baby had the same thing years ago and they did wonders for the baby. Today, they even have better medical treatments. I'm sure your grandbaby will be in great hands and the medical team will to wonderful things for her. Sending prayers for complete healing for your precious new grandbaby.
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Post by librarylady on Aug 5, 2020 17:07:11 GMT
My nephew's twin daughters--one had cleft palate, her sister did not.
The one with cleft palate has had several surgeries spaced months apart. She is 12 now and looks just fine.
As her body grew the surgeries kept her palate developing as it should.
Medicine has progressed so much. She will be fine, but know that it will take more than one surgery.
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Post by Skellinton on Aug 5, 2020 17:07:57 GMT
Congratulations on your granddaughter!!! Your love is palpable even through cyber space! I have no advice, just want you to know that I will be thinking of your granddaughter and I am sorry for the medical procedures she will face and will hope for the best doctors and care she could possibly have. Most of this will be much harder on the parents then it will your granddaughter. I will be thinking of them as well.
I am glad you are able to FaceTime, we are so lucky to have this technology.
Congratulations again!!
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Post by Delta Dawn on Aug 5, 2020 17:10:30 GMT
Congratulation, Granny! I am sure she is beautiful in every way!
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oh yvonne
Prolific Pea
Posts: 7,989
Jun 26, 2014 0:45:23 GMT
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Post by oh yvonne on Aug 5, 2020 17:12:19 GMT
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! 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.
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Post by Patter on Aug 5, 2020 17:13:00 GMT
First, congratulations! I have two heart daughters. One has had 3 heart surgeries (the most recent at age 21; now 25). She has a coarctation of the aorta (narrowing of the aorta) and various other things. She now has two artificial heart valves and a patch on her aorta. She is a special education teacher and teaching in an elementary school. She LOVES to see the photos of when she was a baby and through every surgery and difficulty. I highly recommend they take some sort of pictures for her to see someday.
My second heart daughter has a VSD. It has not been repaired, and right now it's fine "as is." She is currently a 3rd year medical student.
Your granddaughter has great things ahead of her. Celebrate this little fighter. It will truly pay off as she gets older. Neither of my girls are embarrassed or hide scars. They love to educate and share where they can. Maybe this little one will be the same. Huge congrats, and prayers to the family as they walk this road.
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Post by Patter on Aug 5, 2020 17:15:40 GMT
Also, search amazon for congenital heart tshirts. Lots of great ones, and sorry I can't speak to the cleft palate but I am sure there are others on the board that can help there. Hugs!
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Post by flanz on Aug 5, 2020 17:18:36 GMT
Congratulations on your new little grand-daughter. Your excitement is contagious. I am so sorry to hear of the medical issues she is facing. I don't have any experience of either, but I hope that her parents get positive news from the different specialities and have time to gather themselves and get to the point where the joy and excitement of the baby is no longer over-shadowed by the issues. Love to you all and best wishes to baby girl. So beautiful stated! Ditto! @sunnycamom - your posts are so inspiring! Thanks for sharing and I'm so glad you're doing well!
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Post by littlemama on Aug 5, 2020 17:19:59 GMT
our goddaughter was born with a severe cleft lip/cleft palate.she has undergone several surgeries for both and is a happy, healthy 20 year old.
Im surprised that those defects did not appear on ultrasounds. Our goddaughter's parents knew after the 20 week ultrasound and this was before the days of 3D ultrasound.
Hopefully they are still taking pictures of the baby, even if they arent ready to show the world yet.
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