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Getting ready to bring my baby home

post #1 of 14
Thread Starter 
Hi everyone,
I've popped on here just a couple of times before. My son, Josiah, has Trisomy 13. He has been in the NICU for a month since he was born, but we're going through the discharge process this week and getting ready to take him home, which is really exciting and really terrifying all at the same time! I've been learning how to insert his g-tube and manage his feeding, how to suction him, how to handle his oxygen, and things like that. The tube was definitely the worst, mainly because he hates having it put in so much, but I think I've got the hang of it. I'm making my mom learn how to do it too, because my DH can't handle it, and I don't want to be the only one who knows how!
We are really lucky to have a wonderful pediatric hospice place in the area, and I'm meeting with someone from there tomorrow.
Overall right now, Josiah has been doing pretty well, although yesterday and today he has had a little more trouble maintaining his oxygen saturation and has had a few episodes of bradycardia, all of which makes me even more nervous about being "left on my own" with him. I will room in at the hospital with him for at least one night before he comes home, so that will help. We'll be in our own little room, but the nurses in the NICU will still be around the corner looking at his monitors.
So once we get home, I may end up with some questions for some of you who have dealt with similar equipment at home! I'm hoping that I can remember how to use it all properly!
The bottom line is that we're really thankful that he is coming home. My other three kids are unbelievably excited. It's been very hard on them not getting to see him every day and, of course, having me running off to the hospital all of the time. It's kind of a miracle that we are even at this point, because when he was three days old and not doing well we were told that he only had a few days left at best! The time we've spent with him since then has been amazing, but I know the time at home will be the most special.
post #2 of 14
Congratulations!
post #3 of 14
Wonderful! This is special news.
post #4 of 14
That is WONDERFUL news! Congratulations!!! One of my best friends gave birth to a beautiful little girl 5 years ago with Trisomy 18. I was over there daily and one of the hardest things was the tube. Poor little one did not like it, so that was the least favorite to do.

I pray that his homecoming is wonderful!
Jenn
post #5 of 14
I had no idea what Trisomy 13 was, so I googled it. Holy cow! I know it's hard, but this site is beautiful. The children in the stories are amazing!

http://www.livingwithtrisomy13.org/

Congratulations on bringing Josiah home! I hope you get the right support.
post #6 of 14
Congratulations, and happy homecoming Josiah!

I'm so glad you have a really good Hospice. My husband's grandfather just went through Hospice and they were wonderful. Everything was so peaceful.

I hope you get some meaningful time with little Josiah. He's your own special angel, blessing you with this unexpected time. Cherish it!

Do you know about Now I Lay Me Down to Sleep? It's a free photography offered to families with stillborns or infant loss. You should contact them and see if you can get a session after he's home.
post #7 of 14
Congratulations on bringing your little one home!
post #8 of 14
Congrats on the impending homecoming!!! Praying that you get lots of special time with your sweet boy!
post #9 of 14
That's wonderful
post #10 of 14
I'm so happy for you! I know you'll make every moment count and having that little angel home will be amazing.
post #11 of 14
It will be wonderful to have your baby at home with all the other family. Happy Homecoming, Josiah!
post #12 of 14
Thread Starter 
Thank you everyone! I had my hospice meeting today, and the nurse I met was soooo nice. I'm excited to work with them. We are shooting for next Wednesday as the big day. Thank you ladies for your suggestions too. We actually did have a NILMDTS photo session in the hospital. I just made photo books from the pictures, and they turned out awesome. I have also joined the yahoo group for the living with trisomy 13 website. There are a lot of great families on there with a lot of great information. The hospice nurse told me that they care for several other t13 kids in the area, so I might be able to eventually meet some of them, which would be nice.
post #13 of 14
I'm so glad he'll be coming home soon! Many blessings as you all treasure every moment with your sweet boy.
post #14 of 14
Congratulations Mama and family! I am sure that Josiah is ready to be loved up at home. What an amazing next step!
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