Twins with trachs

Liz - posted on 11/09/2011 ( 5 moms have responded )

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My name is Liz. I delivered identical twin girls on 6/18/11 at 25 weeks. They were micropremies that weighed 1lb 1 1/2 oz and 1lb 2oz. It has been almost 5 months since they were born. Last Thursday 11/3/11, they both has tracheostomy surgery. After several attempts to extubate them, the doctors decided this was the best thing to do for them. The ENT doctor did a bronchoscopy a few weeks before and saw nothing but adema from being intubated so long. The day before the surgery it was concluded it was tracheomalasia and that the surgery was needed. They surgery went well. I have seen such a big improvement since the surgery. The girls started nipple feeding 4 days after the surgery. I finally attempted to breast feed them and they are doing well. So I ask myself, why did we wait so long? I am desperated to get my girls home.

Don't get me wrong, I was distraught when I learned that they BOTH had to have the tracheostomy done. I am still very nervous about taking them home. We are learning to care for them but are somewhat anxious about emergency situations like when the tube comes out or the tube getting plugged. How am I going to hear them when they cry at night? They do not make any sounds. How do I know when something is wrong? Do our lives have to stop completely? Are we going to be able to leave our house with 2 babies with trachs? Unfortunately there are not many families in our area that are going or have gone through the tracheostomy . Luckily we have an amazing family support system. However; any advise or guidance would sure be appreciated.

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Amber - posted on 01/03/2014

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Hi Liz - My name is Amber and my husband and I are new foster parents to an 8 month old who was also born at 25 weeks. She has been in the hospital since birth, but we will be bringing her home very soon! She is also on a trach, as well as a vent and g-tube. I read your post and am very interested in how your little ones have done and how you and your family adjusted to the new journey. Do you have any advice for us?! We, like you, do not know any in our area who have experienced a trach, but also have a great support system.

Hugs and God Bless you and your family!! Thank you!

Kristin - posted on 10/04/2012

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I'm late posting....by about a year. Just wanted to tell you that you are not alone. My identical sons required trachs at 2 days old. It was hard. Very hard. (As you now know, of course.) But you can do it. (Again, as you now know.)



Sorry I wasn't around when you needed the support. I hope that things are working out for all of you, now.



Sincerely,

Kristin

Tonya - posted on 04/29/2012

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Since I can only see your first name, Liz. I am going to send Sasha a message in hopes that she is still your nurse. I know of several fb resources that will help you and can connect you with other moms of trach babies (twins too). I am sorry that I didn't see this post until now. Please feel free to message me or add me as a friend.

Sasha - posted on 04/15/2012

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You are doing a fantastic job, and they are lucky to have you as their Mother. The girls are more than taken care of, they are loved. By everyone. I know because I am their nurse, and am researching for them, that's how I found this post. :)

-Sasha

Rita - posted on 11/19/2011

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i thinkmyou must be amazing to have twins with a trach my grandaughter was trached yesterday shes 3 month old

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