Wednesday, April 28, 2010

what IS the date today anyway?

Today was a VERY LONG, and GREAT day!! The kidney specialists came in to see Lilli today, to see what could be causing this very high blood pressure she is having... and... they found no answers- which I am glad there is nothing wrong with her kidneys, but... frustrating doesnt even begin to describe the feelings when you have seen soo many doctors that just say, " Well, we'll TRY this.." ahh! So they put her on high blood pressure medication to be given 3 times a day, and we have to check her blood pressure before each dose. I hate her having to get more medication- right now she is on a multivitamin, the tiny bit of morphine, and lasiks to help her pee... not bad, but I just hate the thought of a baby having to be on high blood pressure meds!! If it helps her... then I guess I gotta get over it! She had another nurse that we havent seen in awhile- since right after she came off ECMO, and the nurse was so happy to have her again, and she held her throughout the day :0) - she's gonna be awfully spoiled, but she deserves it!!
I scheduled my "car seat education" for tomorrow at 3- they have to sit her in her carseat for an hour (bc that is the duration from the hospital to our house) and just monitor that she is stable and okay to sit like that. They also hook it in my car for me and adjust the straps and things...
Home health care came in today too!!! This is the people that take care of all the oxygen and tubes and machines that will be needed for us at home! They confirmed our address and told me how the process will work... Ah! So exciting and makes it all so real! SHE WILL BE HOME NEXT WEEK!!
Now I just have to sign up for the infant cpr at the hospital which they make me do before I go home! And they will also have me do a "room in" experience- where I stay the night in the hospital in a private room with Lillian and they monitor me to make sure I do everything correctly!
I asked who the doctor is that will be starting Saturday, because the team changes- and they said Dr. Spears- and the fellow walked by and said "If you want to get out of here, he is the discharge doctor!" , I asked what he meant and he explained- " He is the guy to have if you want to get your baby home, Im not just saying this to please you, but he likes to care for them, and send em on their way" - so I asked, well did ya'll choose him for me? or .. is this a coinsidence- and he laughed at me, he said "no we cant CHOOSE your doctors... haha" and walked off. Wow, what a miracle! I am so glad I am getting this doctor, there is no reason for her to be there and I know he'll just take a look and send us on our way! Thank GOD...
I got lots of good smiles out of her today, and we gave her a quick sponge bath this evening and... she is just such a good girl! Her cry is the sweetest thing you have ever heard, I cant help but smiling when I hear it because it took her over a month to make any noise at all! Its the sweetest cry in the world, and she is so good! She only cries when she is getting her diaper changed or having acid reflux or something is making her uncomfortable.. hope this lasts!
She also had her first bottle feed today! She took 4 cc's, but for her first time- thats pretty good! She's got the sucking down, now she just has to put it all together! She is already doing better at the nursing as well, practice makes perfect!
Sooo- we'll see how tomorrow goes with the car seat test! Thank you all for your prayers... Thank God for this sweet little girl and the progress she has made!
Love yall,
Lauren and Lillian

1 comment:

Anthony Adani said...

I am so stoked that she is almost ready to leave that place. I keep praying everything keeps going well.