Going home with Trach and ventilator please help!!!

We have been stressed in in NICU for 225 days, but its nothing compared to being home still on a ventilator, and tracheostomy. We have home nursing, but have made two frantic trips to the ER. Does it get better? They say we will be on the vent for a year or so. Please help.

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Neither of my babies came home on a ventilator or trach, but we did have to deal with oxygen, apnea monitors, and medications. It is scary and overwhelming at first, but give yourself a little time and it will become second nature to you, I promise! Don't hesitate to ask questions of the medical professionals in your life-that's what they're there for. As you settle into a comfortable routine things will get easier!

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Congrats on the little one coming home!!!!! As mentioned above - I think all of this will become second nature to you. The things we (preemie parents) get "used to" seems so crazy, but it is a part of the miracles we call our children:) Keep your chin up and before you know it all of this will be a distant memory. Good luck!!! I will keep you guys in my thoughts and prayers. Remember we are here if you need to "talk" or just vent!!! Keep us updated on your little ones progress.

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I am on another blog called preemieblogmoms, that have many kids home on trachs and vents, so perhaps you can join that one to get some advice. I know from reading their blogs and stuff, that they do manage everyday and it does get better, it is just new and scary for you now. I brought my son home on oxygen and two weeks later, he had silent reflux and aspirated into his lungs, he passed out, we had to do CPR, and this all transpired over 10 mts. had to stay in PICU for another 2 wks, had to have another surgery, etc. It is a very scary thing to bring your little one home, especially with a vent. Do you have 24 hrs nursing care, or how many hours do you have a week. Is she on a gtube or ng tube. I know you will get into a routine and like the others have said it will be second nature in no time. Good luck and join that blog as they have many in your shoes.

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My baby boy born at 25 weeks spent 6 months in the hospital and had 9 surgeries came home with a trach in september. Jacob developed subglottic stenosis (narrowing in the airway due to ventilator) and had to have a trach but we chose to do this to get him home. He is not on a vent but he does require oxygen mainly at night. It was very difficult when we first came home but it has gotten so much better, we dont like having to change it but considering other circumstances we are so blessed. I remember when ur little one was born , Jacob spent 178 days in the hospital. We are hoping to get his trach out in spring if he grows enough if not we will have a reconstruction surgery when he is 2. He is growing and developing at an amazing pace and is almost on his actual developmental level but it breaks my heart not to be able to hear his sweet little laugh and his voice. These babies go through so much and they are so amazing. I pray her lungs develop quickly and she can get her trach out. Sorry my thoughts are so scattered I am trying to multitask.

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