Saturday, October 31, 2009
Oh so busy!
We have had so much going on the past few days! Lets start with wed night (I cant remember when I last posted and honestly Im too lazy to go back and look right now!) Greg and I met with Stacy from Early Intervention (EI) basically she just explained the program and told us Ethan automatically qualifies and that he will have his own nurse who will come to the house once a week to check on him and work with him,her name is Kathy.(Im pretty sure I did post info on this last time so Im going to stop here...but if I didnt Ill come back and do it later!)
Thur...I got up super early and went to the social security office to apply for SSI for Ethan, what a quest that was! I was told to do it asap then I get there and had to wait forever (even though I had a appt) and might I add, I was VERY uncomfortable there. I hate to be ugly but people were coughing and wheezing and not covering their mouths, and then to top it off the lady beside me (who couldnt grasp the concept that I was leaning away from her bc I didnt want her touching me) decideds to tell me and another lady she has hiv and hepatitis c and thats why she is there applying. Now I know that I cant catch anything just sitting beside her, but I caught myself trying to look at her arms and anything else that may touch me for lesions, and I kept thinking, "oh no, what if I get something, Ethan will get it" crazy I know, but Im being honest here! Anywho, I finally got called to the little window only to be told I cant apply just yet bc they still havent assigned him a ss#. They said they rush ordered it and that they will call me on tue to allow me to do the interview over the phone.They also had me go ahead and sign a lot of papers so I didnt have to come back (very happy about that!) So I leave and go on my mariily way only to get a phone call with them telling me they had me sign all the wrong papers (grrr) but they said they would just mail me what I needed to sign and I can mail it back (yay!) The rest of thur wasn't as eventful, basically i went and got new tires on the car (it was a big must!) and went and sat with Ethan a few hours.
Fri....WOW FRI! Greg and I got to the hospital between 830-9a sometime..First we met with physical therapist (PT) who showed us how to exercise Ethans ankles knees and hips to help him gain even more strength then she told us that she was pretty sure after discharge we will be coming up to the hospital for therapy once a month..I asked her if we needed to come up there or if we were going to be doing it through EI and she said she would have to get back to me. Then we met with the occupational therapist (OT) basically she just talked to us and told us about her evaluations of him.She said she is very pleased with his movement and control and that she thinks he will be right on time with crawling and walking. She said her only concern is that his muscle tone is a little low.But she said if we do the exercises with him that PT showed us it will help build that up! Next, we met with some other lady who showed us how to properly put this belt they made on Ethan for when he is in his carseat or a swing or bouncy (basically anything/where that will put pressure on the sac on his back) The belt is just foam with a hole cut out to fit the sac and velcroe to hold it together.It's not hard to do at all when Ethan wants to cooperate! Then...we meet with a specialist who taught Greg and I how to operate and trouble shoot the apnea machine. They have decided that Ethan is going to be on this machine 24/7 only with the exception of his baths. Once again this isnt really hard as long as he cooperates..we have to choices on the way this is on him, one is a belt that gos all the way around his chest and fits right under his pits, the other is leads just like you see with a ekg. He seems to like the belt better, which is fine bc we dont have to worry about them falling off or getting moved like we would with the leads. I do have some leads so that i can put them on him in certain situations (like getting pictures done) that way you wont see the big bulge under his shirt! After this meeting we meet with EI again and met nurse Kathy! She was very nice and seemed VERY knowledgable. We filled out paperwork and talked about our concerns for him as of now and disucssed a little of a plan (basically we have no plan right now except for getting him "transitioned from the nicu to home") After that meeting it was FINALLY 130p and we took a break! We went and got lunch and came home to pack our overnight bag then headed right back to the hospital! We got back to the hospital (this is probably a good time to mention we got to room in with Ethan last night, the nicu requires this at least 2nights before discharge to see how you "handle" being the caregiver.) anyways we got back to the hospital and did the infant cpr training...we watched the video 3x's before they remembered they had us in the back doing it lol so we are no pros at it! Then we demonstrated! Then we did the purple crying class. Then finally they put us in our room and brought us our son!! All the stuff of the day was finally over! We sat there and cuddled with Ethan and played with him and stared at him lol (im sure he thoguht we were crazy, espically me! I couldnt stop holding him and staring at him) The first few feedings and changes I did, and I feld him as he slept..then finally I decided I should share and I let Greg hold him and feed and change him! Then Greg held him as he slept, when we finally put him in his crib (around 4am) he was not a happy boy! He wanted to be held (ught oh!! What have we done!) So what did we do? We held him! At 10a the nurse came back to the room and rot him and his stuff and took him back to the nicu :( and Greg and I were to head home (they require you to go home and "sleep" its another part of their who discharge plan thing) so we snuck back into the nicu to say bye to him again..I think today was the hardest goodbye thus far, mainly bc I got to be with him for so long and I finally felt so connected. Ive felt connected since day one and I have loved him with all of me since I found out I was pregnant, but there was something about last night...I felt this joy and overwhelming love that I have never felt..I mean I dont know how to describe it, I love Greg with all my heart and I could have never imagined loving anyone more than that..but Ethan....my love for him is SO DEEP! Something I have truly never felt before!
We got home and I got a phone call! Ethan is being released on Tue at 10am! I cannot wait! The only sad thing is that Greg has to work. He is going to try to get off, but were pretty sure his boss isnt going to let him :( If he doesnt I think Im going to have my sister go with me. That way she can drive and I can sit with Ethan. I dont want to be ugly and I dont want to hurt peoples feelings, but I dont really want anyone else going to bring him home. I feel like this is such a special time, I dont want to share it with anyone else (except Greg of course) I know my sister will stand back and just let me have my time and i know that isnt how it will be if I allow others there. So my decision is made! No one is allowed to go!
Now, Greg has gone off for a little while and I am sitting at home.I have cleaned up in the house a little (theres alot Im leaving Greg to do, I got worried on fri bc my incision began to bleed,and my dr told me Im over doing it so I think I may actually slow down a little) But Im waiting on the mail to run! (yes Im still waiting on the blessed mail at 422pm on a sat! crazy isnt it!) But Im still waiting on my short term disability check. I pray it gets here today or mon at latest...I am broke!! I have enough for gas and a few groceries, but I really want to go ahead and stock up on groceries so I dont have to go back for awhile once I get Ethan home. And I also have some bills to pay and other such things. Well, I think I have said it all! Ill be back to update after Ethan comes home!!! I cant wait to share pictures! And tell how it goes!
Oh before I go a few last things..Ethan will be circumsized between tomm and tue :( poor baby I feel bad but it is something Greg and I both feel is in his best interest. And I took pics of Ethan today for his first halloween!!! He wasnt as happy about it as I had hoped but they are picutres none the less!!