NariaDreaming posted this in 3T and ok'd it being posted here.
"For those of you who have been here for a while, I wanted to pass along the news that one of SND's triplets is on life support due to RSV complications. More info and contact info for the sunshine mission is available on a thread in SAIF
Post by nerdykitten on Feb 10, 2017 14:11:13 GMT -5
I heard the news from westiemom last night and I was devestated for your family snd1231. I hope the ECMO gives G the chance to recover her strength and allows her to get better. Your family will be in my thoughts.
Me: 30 DH: 29; Married: September, 2010 TTC #1: April 2013 Benched: May 2013 Cancer(DH) Off the Bench: September 2014 July 2015 ER low sperm count and motility(radiation side effect). FET September 1,2015. BFP 9/9/15.- 3 on the way.
Post by lindy04aggie on Feb 10, 2017 14:50:48 GMT -5
Update from SND: Gracie is doing pretty good. She's still requiring a bunch of support but no setbacks so that's great. Nataleigh seems to be over the hump. She is playing and eating finally. Still wheezy but ok. Not sure if I updated or not but she has confirmed bacterial pneumonia, ear infection, and rsv.
I sent her the money that I have collected so far. Anything else I receive, I'll send to her as a receive it! Thank you everyone for your support for SND and her family!
Post by lindy04aggie on Feb 10, 2017 15:19:56 GMT -5
New update from SND!!!
Gracelynn had a stable night. She had no major changes in any area. Today they took off the paralytic to check for neurological damage. And she passed with flying colors!!! Moving all extremities, responding to pain,touch, and light. She even held my hand! I needed to know she was still fighting in there and it helped me so much! Not sure about how long we will be on ecmo or anything else but for now we are stable. Nataleigh has confirmed bacterial pneumonia, an ear infection, and rsv. She is playing and eating today thankfully. She's wheezing a bit but no major retractions. We feel she's on the end part of the rsv and the pneumonia is what's bothering her now. Overall things are good today.
Me:24 DH:27 Married: 12/15/12 BFP May 2014 from IUI #2 after 8 months TTC B/G/G triplets born on 10/22/2015 at 25w5d After a total of 140 days in the NICU all three of my miracles came home!
Me: 36, DH 32 Bfp#1 June 2014 edd: Feb. 22, 2015,mmc: Aug. 5,2014,D&C Bfp#2 Feb. 2015 edd: Oct.12, 2015, mmc: Mar. 7,2015, D&C
DX: Me: slightly hypothyroid, taking meds DH: SA Showed all low levels, urologist appointment showed all was normal, so no reason why the levels were bad.
Plan: IUI #1 Aug. 25mg clomed, to help boost egg quality - BFN IUI #2 Sept. 25mg clomed, BFN IUI#3 Dec. BFP!! TWINS Edd: Aug. 22, 2016
Me:24 DH:27 Married: 12/15/12 BFP May 2014 from IUI #2 after 8 months TTC B/G/G triplets born on 10/22/2015 at 25w5d After a total of 140 days in the NICU all three of my miracles came home!
Post by lindy04aggie on Feb 13, 2017 8:43:28 GMT -5
Update from yesterday:
Gracie had a pretty good night. Since stopping the paralytic she's been requiring a bit more sedation to keep her comfortable. We've started a few more meds to help her stay comfortable and let the machines work for her. Today they are weaning down a touch on the amount of support ecmo is doing and pushing the vent and Gracie to work a bit more. So we are on a little more vent support. Overall she's doing good and we are just giving her time to recover, rest, and heal.
Good news report! Gracelynn is proving to still be a little fighter and miracle. She is off ECMO and doing very good! We stopped her nitric a few days ago and started weaning support last night and now she's just on the vent and sedation meds. We still have a very long road ahead of us but we have finally made some progress! Praise the lord! Thank you all for the prayers, they are working!
Nataleigh went to the ped this morning and he is pleased with her progress. So we finally have Nataleigh and Nolan back together again! She's still a little wheezy but doing much better!
Me:24 DH:27 Married: 12/15/12 BFP May 2014 from IUI #2 after 8 months TTC B/G/G triplets born on 10/22/2015 at 25w5d After a total of 140 days in the NICU all three of my miracles came home!
Post by lindy04aggie on Feb 14, 2017 12:12:25 GMT -5
Update from this morning:
Gracelynn had a difficult night. She required more oxygen on her vent and a bit more support overall as well. We are very glad and relieved that she is off ECMO however she is still a very sick little girl. We are hoping we are able to stay off the nitric oxide but we might have to add it back if she's still struggling.
Post by lindy04aggie on Feb 16, 2017 8:55:10 GMT -5
Update from yesterday:
G had a rollercoaster of a day. Yesterday they had to replace and move her art line and today they took out the central line and placed a picc line instead. Both procedures took a lot out of her. She hasn't been holding her sats very good and has had a lot of random desats and still isn't tolerating being touched. Her X-rays are looking a little worse as well. She's requiring more support from the vent again. They are also having issues keeping her sedated and comfortable. The doctors are working on getting her lungs to open up more with different respiratory treatments and trying to figure out the right meds to keep her comfortable. We could still use all the prayers.
Post by Squishy622 on Feb 19, 2017 21:53:17 GMT -5
Oh my goodness I'm just catching up here and seeing all of this. snd1231 you and your sweet girl will be in my thoughts. Sending well wishes to all of you.
Post by lindy04aggie on Feb 20, 2017 8:43:34 GMT -5
Update from Saturday:
Gracelynn is still as stubborn as ever. Although she is on very high doses of sedation she is still fighting against the vent and moving all over. This makes her not breathe as well and require more vent support. So we are requiring a lot of oxygen and support right now. We are trying a few new meds and ideas. We are hopeful they will help her be more comfortable and require less support.
It seems like she had a rough weekend, so please continue sending t&p!
Post by lindy04aggie on Feb 21, 2017 10:26:19 GMT -5
Update from yesterday:
Gracelynn is having a really rough day. She started really struggling around 2 am and was put back on nitric. She still has a bacterial infection in her lungs so we are back on antibiotics. We are going to continue the nitric, oxygen support from the vent, inhaled and IV steroids, and a new respiratory treatment plan.
Gracelynn is having a really rough day. She started really struggling around 2 am and was put back on nitric. She still has a bacterial infection in her lungs so we are back on antibiotics. We are going to continue the nitric, oxygen support from the vent, inhaled and IV steroids, and a new respiratory treatment plan.
I'm sorry to see this update. Continued T&P from all the Bocas.
Post by lindy04aggie on Feb 24, 2017 8:50:37 GMT -5
Update from yesterday. Finally some good news!
Gracelynn has had a much better day. We've been able to wean her vent setting a little and nitric as well. We seem to finally be making some progress in the right direction. We still have a very long road ahead of us but we are rejoicing and thankful for the positive news.
Post by lindy04aggie on Feb 28, 2017 9:27:29 GMT -5
Update from yesterday:
Gracelynn is slowly improving. We are still on the vent and sedated/paralyzed. We have been able to wean down on the amount of support we are getting from the vent and nitric. We still have a long road ahead of us but we are so glad and thankful that we are finally taking baby steps in the right direction. Thank you all for the support, prayers, and gifts. We appreciate and love you all!
Thank you everyone for the amazing support we have received during this awful time. I can't express how grateful we are! Gracelynn is doing good right now. We are close to coming off the vent!! We have to wean her sedation/pain meds still and she will go through withdrawals and really not be herself for a while while we adjust but I'm glad for progress. We should be off the vent in a week. Then we will have at least another 4-6 weeks here weaning down on oxygen and learning to eat and move again since she has been completely sedated for over a month now. We are finally through the worst and most critical time but we still have a long road ahead. Once again thank you for everything!
Me:24 DH:27 Married: 12/15/12 BFP May 2014 from IUI #2 after 8 months TTC B/G/G triplets born on 10/22/2015 at 25w5d After a total of 140 days in the NICU all three of my miracles came home!
Me: 36, DH 32 Bfp#1 June 2014 edd: Feb. 22, 2015,mmc: Aug. 5,2014,D&C Bfp#2 Feb. 2015 edd: Oct.12, 2015, mmc: Mar. 7,2015, D&C
DX: Me: slightly hypothyroid, taking meds DH: SA Showed all low levels, urologist appointment showed all was normal, so no reason why the levels were bad.
Plan: IUI #1 Aug. 25mg clomed, to help boost egg quality - BFN IUI #2 Sept. 25mg clomed, BFN IUI#3 Dec. BFP!! TWINS Edd: Aug. 22, 2016
Post by lindy04aggie on Mar 3, 2017 9:50:42 GMT -5
Y'all... I love this post from SND. Be ready to shed a happy tear.
Today was a difficult day. Today marks one entire month of Gracelynn being at ACH. I never in a million years would have guessed we would be in this situation with her. She was the healthiest of my trio. The one who "didn't know she was a preemie" as all the NICU nurses joked because she did so well. But yet here we are. The doctors in the PICU never thought she would require such scary interventions. The last month has been even more difficult than our NICU stay. Watching my lively, adorable, sweet, sassy child turn into a helpless, sedated, sick child unable to breathe on her own or even move has been heart wrenching. Almost losing her too many time to count has forever scarred me in ways I will never get over. But she is still fighting and slowly but surely she is improving. One baby step, one "inch"stone (instead of milestone), one moment, one accomplishment at a time we are getting closer to healing! I'm not posting this to say poor me. I am posting this to say I AM BLESSED! Not only do I still have my three miracle babies, but they have continued to defy ALL medical odds and disprove everything doctors have to say. This journey has made me yet again realize what hope, faith, and perseverance really are! It's forced me to let go of the control I so desire and cling to. I've had to place my beautiful miracle in Gods hands and give up any and all control I have. I have seen that kindness and generosity still exist. When she was put on ECMO, I received messages, emails, PMs, calls,letters, etc from all across the WORLD saying they were praying for my sweet baby! Every denomination of church, friends of friends, people I didn't know, infertility groups I haven't been on since my delivery, triplet groups of ladies I haven't even met face to face, the list goes on and on of people that have reached out and lifted us up in prayers and even given donations, provided meals, sent gifts, written letters, so many things I can't even begin to list them all. I am learned to NEVER doubt God and the power of prayer!! Without everyone's prayers, support, gifts, meals, cards, text, calls, drop ins, etc I would never have made it through this trial we are going through. A song comes to my mind - " I've never lost my hope I've never lost my joy I've never lost my faith But most of all I never lost my praise" No matter what season of life you are going through never lose your praise. Never stop believing that God can do ALL things!
Gracie had a terrible night. She kept desating and requiring so much more oxygen. We even went up on her peep (vent settings). We noticed she hadn't pooped in a few days and her stomach was very distended. So we did two X-rays and they believed she had intussusception where the bowel overlaps itself essentially. So we did an ultrasound at 2 am this morning. The results are mixed. They aren't convinced 100% it is or isn't the overlap. We are trying a few more less invasive approaches to get her to poop as her X-rays literally showed so much poop it wasn't allowing the lungs to fully expand and put pressure on the heart. If they don't work we will be having surgery to essentially clear her out and repair the intussusception. They feel the bowel issues are why we are having issues breathing again. So today we are waiting and trying to let the meds work. Never thought I'd be praying for poop.
Also please don't share this post or picture. I'll post a more general post on my personal page. Thanks.
Me:24 DH:27 Married: 12/15/12 BFP May 2014 from IUI #2 after 8 months TTC B/G/G triplets born on 10/22/2015 at 25w5d After a total of 140 days in the NICU all three of my miracles came home!
Post by nerdykitten on Mar 7, 2017 19:31:44 GMT -5
I am so sorry for this new issue. I hope the lesser invasive methods are successful and surgery is not required. I will continue to keep your family in my thoughts.
Me: 30 DH: 29; Married: September, 2010 TTC #1: April 2013 Benched: May 2013 Cancer(DH) Off the Bench: September 2014 July 2015 ER low sperm count and motility(radiation side effect). FET September 1,2015. BFP 9/9/15.- 3 on the way.
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