Liz - posted on 11/09/2011 ( 4 moms have responded )
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.