Thursday, August 13, 2015

Tubie Kid

Well its done! And I wont lie it was hard to get thru...
We had argued about getting Madie the Gtube for quite some time...and madies weight was not going anywhere..Everyone was so worried about her growth! There were lots of different opinions on weather to get this for Madie...too many to wrap my head around.. I just HAD to do this. I HAD to... it was really hard.
The whole surgery was 30 min tops... When Madie woke up she was very disoriented and scared...It was really tough to see her that way... I felt the tension in the little room was so thick between Miles and I you could slice it and spread it..... I knew he did not want to do this and I needed his support very much...I wanted to cry on his shoulder and him tell me it will be ok..that I had made right choice..that WE had made right choice! I couldn't let it break me down...I just couldn't. I knew madie would be ok and I knew he would be ok...eventually...We just stayed there and loved madie to pices and we were very much a family that weekend...
Day one was the hardest.. I opted to stay over the first night and would have gotten sleep if the machines kept quiet.. Oh sweet girl...in such distress. Saturday morning arrives and Miles comes in that morning while I go back home to sleep a little and eat something. Bed was VERY NICE. That day the nurses and various teams of doctors kept coming in and asking questions and gathering information... my head was pretty spun. We had hoped we would be sprung loose that day but to our weary tired selves we were stuck one more night. We both opted to stay over..both getting late night lessons in tube feedings. pretty exhausting but it was an adventure!
When I got home sunday after we finally were discharged and I had to go out of the way to Target to get Madies antibiotics and rush cause the PUMP was getting delivered that night I was pooped. The pump did not get delivered till around 8 so I kinda hurried for nothing which was annoying but we were all set! I was a little emotional really wanting Miles by my side helping me and being here..I just wanted hugs and comfort and a tall glass of wine...:( Maybe a rain check? lol
But I was here. I was a bit nervous on round one of this dang pump and we texted back and forth and he gave me a good cheat sheet... so...SUCESS! His Brain just absorbs the spoken word so much easier than mine...like I need freakin pictures and note taking...LOL Exhausted but alive.
Fast forward over a week later...two weeks after her surgery and she is doing fine!!
Its still a little crusty around the area but I keep it good and clean and she is drinking just fine from her sippy with minimal force feeds.... I am going to try to JUST use the pump at night... been doing four hour feeds and sure it goes off at like 1am and I am tired as all hell but she's hungry in the morning and I don't worry about her throwing up...cause THAT was a blast! I kinda blamed myself getting a little tube crazy and overfeeding her little tum tum....
She is her little usual self! with an annoying PEG tube hanging out...lol ON OCtober 15th we will go to Hartford and get the button put in..which will we MUCH better to tuck under her clothes...SHe has only pulled on it a few times and that kinds makes her give you a strange look...
I cant believe the new school year will start soon! Slow and steady I have been getting her some new clothes and even a new pair of sneakers :)
Other than that all is going I guess...just happy that we have no apointments for awhile and can just have summer break time... I wish I was at the beach so badly.... like ache for it ...
Hope everyone is well and hangin in there. If I can do it you can!!

Me.

2 comments:

Heather said...

It does get easier and the beginning is just the hardest part. When she gets sick, because you know she will, now that school is starting, you'll be glad to have it. Weird but true. You have done good mom. And of course Madie too.

Kenneth Lilly said...

She is really growing up so fast, they all are.

Questions.
1. Will you still take her to the beach with the tube. If you say no, ask Heather for advice, she does it all the time with Zoey and I am sure has pointers.
2. You mentioned a lawn guy and being lonely in a previous post. Why not invite him in for a lemonade, you know...cool down...que music...

WOOHOO!!!!!