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#1
09-28-2008, 04:59 PM
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Hi...
My name is Nikkole. My son, Ethan, is 19 weeks old (7 weeks corrected). He was born 12 weeks early due to severe IUGR and Oligo. He weighed 15oz at birth and was 9.5in long. He has overcome several obstacles---staph infection in his blood and bones, 2- grade 1 IVH's, and a small PVL. He has BPD (Chronic Lung Disease) and has had 3 failed attempts to extubate. The BPD is his only problem currently. We chose to move forward with a trach because Ethan is very developmentally appropriate, even for his real age, and we do not want him to get behind because of having the ET tube in his mouth. He is also starting to self-extubate on a regular basis and it is never pretty. Ethan is now 6lbs and 16 3/4 in long. He is AMAZING and a miracle...I was put into the hospital for 30 days before he was born and we were told that he would be stillborn because he had stopped growing. During that time, he grew a miraculous 100g in 6 weeks...just enough to be revived at birth. Ethan is getting his trach surgery on Tuesday, 9/30, at 1pm. I am excited to see his beautiful face with no tape, but very anxious too. I'm glad to have found this site!
I also have an angel baby, Ella. She was born last year at 27 weeks due to Severe Preeclampsia and HELLP Syndrome and we lost her at 3 weeks old due to NEC. She is now watching over her baby brother and mommy and daddy. You can "meet" Ethan at his Care Pages website... http://www.carepages.com/carepages/EthanHollander and you can "meet" Ella at her Caring Bridge website... www.caringbridge.org/visit/ellahollander Any info, advice, etc. would be much appreciated! Can't wait to meet you all. Thanks. Nikkole 
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#2
09-28-2008, 05:44 PM
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I'm so glad your little boy is doing so much better. I'm fairly new the site and it has helped because you can talk to other people who know what you are going through. Look forward to talking to you!
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Leeanna, mother to Makiya  7/17/07, diagnosed with hypophosphatasia(a rare bone disease), trached 03/11/08, vent dependent , GT, tracheomalacia
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#3
09-28-2008, 06:26 PM
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Welcome Nikkole, Ethan sounds like a true miracle and you have a wonderful attitude about the trach which will help you immensely. This is a good place to learn and laugh and sometimes scream. Karen
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Karen, married to Charlie. Mom to Gilbete', Jeanette , Andrea, Ben, Ciara, Brian and Brady. Also mom to Alize who is with God. Grandmother to Marek, Paige, Vincent, Leilani and Cayden, Emma and Samuel. 
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#4
09-28-2008, 07:09 PM
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Hi and welcome to the board. we are all glad that you have found us. you will find great support and alot of comfort here. What a true miracle baby boy you have . We will all be thinking about you guys and hope that the surgery goes well and as planned, our thoughts and prayers are with you all. May god bless your Angel girl too..please take care and we look forward to hearing back from you all.
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#5
09-28-2008, 08:45 PM
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Hi Nikkole...
First I have to applaud you for moving forward with the trach. It's a tough decision... but looking back on our 26 weeker, I wish is bio parents would have trached sooner. He now has crescent shaped vocal cords from being intubated for so long. And he may not have been so delayed had the trach gone in sooner. It has taken him until after his 2nd bday to catch up. Ayden too has severe BPD and came home on a vent after 9 months in the hospital. He currently is a happy 2 1/2 yo, however, as you can see below, he still needs O2. He came off the vent when he was about 2 and we just got the trach out 1 1/2 months ago. But is doing great. I hope the surgery goes smooth... welcome to the board!!!
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Dawn  former 26 weeker -- 4/2006 -- trach, g-tube, nissen; came home 1/07 vented 24/7; Successfully decanned 8/8/2008 -  Follow decan at: http://sleepy-dogs.blogspot.com/
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#6
09-28-2008, 10:17 PM
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Welcome! You are going to love this board. I am still fairly new myself and I just can't say enough good things about this websit. It is really helping me through this experience, everyone is so helpful. I am so glad to hear that your son is doing to well and I look forward to getting to know ya
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 Isaacsmommy--[/url]26 weeker born 6/29/07 with subglottic stenosis due to intubation, tracheal malasia, CP, trached on 1/4/08
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#7
09-29-2008, 07:18 AM
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Welcome!!! You could not have found a better place. Ethan (one of my grand sons is an Ethan too) has already overcome so many issues - He is truly a little miracle - On this board no matter what the question is somebody will have an answer and they truly become your cyberspace friends - You cry, we scream, we vent but most importantly we still laugh. I wish you the best with the upcoming trach surgery.
Michelle
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Grand Ma (or Nanou French version of Nana) to Cedric born on August 5, 2006, Trached on October 16, 2007 because of subglottic stenosis due to 27 intubations for debridment of polyps https://www.babiesonline.com/babies/c/cedric1/
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#8
09-29-2008, 03:29 PM
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Good luck tomorrow. Welcome to the site. We'll be thinking of you. You've found a great group of friends who 'get it'.
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Claudia - Mom to Sienna (4-22-07) and Sammy (12-14-2008). Sienna was trached 9-27-07 for vocal cord paralysis. Right cord now moving. Decannulated on 7-16-2008!
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#9
09-29-2008, 04:11 PM
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Welcome to the boards!!!
Kris
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Kris 3/24-26wk twin girls born 7/01 at 1lb15 & 1lb13. Rynn-trach. malacia, Grade 1 SGS, reflux, asthma, autism(high funct. Asperger's) & epilepsy. Madelyn-severe trach. malacia, Grade 3 SGS(Trached 10/21/01 to 11/20/11 DECANNED) ,PVL,BPD,CP,submucousal cleft,reflux, G-button(12/01), nissen X2, off vent '03.Two of the most Perfect Princesses!  !!
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#10
09-29-2008, 04:27 PM
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Hello Nikkole...welcome
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Kerry, mom to identical twins, Elijah & Milo, both trach dudes, 26-weekers as a result of Twin To Twin Transfusion Syndrome (2002). Daughter, Maisie ('05) & Henry ('08). *BOTH decanned after LTP w/rib graft 4/10 & 7/10!* wooo hooooo!  The Birthday Boys by TwinTransfusion, on Flickr
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