Special Needs
Not sure where I belong, maybe here
My twin girls were born at 28 weeks, 1 day. Preemies right? Yes, but our journey has been much longer than the average preemie. My girls have chronic lung disease, Eden is now a trach/vent baby but doing fantastic with it. Reagan in still on the nasal cannulla, but also doing well despite a cold this week. Both have g tubes, Eden has a g-j tube. We are still in the NICU after 21 weeks, but home is approaching quickly. I love my girls more than the world itself, even with their medical equipment. DH and I are used to it and it doesn't bother us. Perhaps some here can relate to my situation, maybe not.... just thought I would check in. I've been on the Multiples and Preemies pages, but looking for something new.
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Re: Not sure where I belong, maybe here
Yes, you definitely belong here! Congrats on your twins first of all! Glad you will all be home soon after a long haul in the hospital.
My son was not a preemie, but had a very serious heart defect that caused major airway issues. We were in the hospital for 99 days. He is still on oxygen and has a GJ-tube. We almost went the trach route, but they did a surgery that tacked up his floppy airways to his sternum as a last resort and it worked. I agree that I don't even see my son's oxygen tube anymore, although it will be nice when it is gone. We know we have a long road ahead of us still, but we just feel lucky that he is here with us and going to be turning 2! For us, it makes it easier accepting his delays when he was so sick and we could have lost him.
Let me know if you have any questions about all the medical equipment when you get to go home. We are so used to it all now that it is second nature.
Good luck to you and I hope you will get to bring your wonderful girls home with you soon!
Congratulations on your little girls!!! Oh how I hope for you that you get home very soon!! Its so much more fun at home!!!
We had a g-tube too for a year and a half - we wouldn't have made it without it!!! This board is full of wonderful people full of info on all kinds of varied different things - it doesn't matter what you post - it seems someone can relate!
Love the girls names too! They sound adorable!
This is definitely the place! My son was also "technically" a preemie but his health issues come from VACTERL Association (there is a link below and Drake's story is in my profile if you're interested). He has had a g-tube since he was less than 24 hours old and a trach since he was almost 3 months old. We do not, however, have a vent. He is now 3.5 years and doing amazingly well! He spent almost 6 months in the NICU and, after a battle with the hospital, we were able to get him home and have been taking care of him ourselves since then.
Let me know if you have any questions that I might be able to help with.