Thursday, February 13, 2014

Neonatal livin

So much love....whoa friends!! I sit here in the waiting room of the NICU (getting very tired of this concrete jungle and all the chemical smells) on my laptop to just get a breather and read your comments and they made me cry. I am so not strong, but your comments make me believe I am! Thank you. They mean so much to me and help me keep fighting this awful battle until I reach victory. 
I know victory will soon come

Many have asked me about transporting Loxxley in the air med. Well, they will not make a flight to another level 3 trauma facility if its not medically necessary, so flying is out because Loxxley is so stable. As soon as the docs tell me Loxxley can be discharged, and I hope I get at least a days notice, Chris will fly up here and drive home with us!! Can't wait for that day. It seems like 500 miles ahead of me.

Mr. Loxx is doing so well. He is just working so hard at his feeds. Poor little thing tuckers out after a few minutes and I have to constantly arouse him and kiss him until he wakes just enough for me to stuff the bottle back in his mouth. I am really working with him at taking a full bottle every.single.time. If he takes a full bottle for a day then the docs watch him for another 24 hours. We are so close. So this momma bear is hoping we will go home this weekend. Oh how I just need a break.....

<<<Hey mom, I am going to crumble when I get home, just giving you a warning>>>  (and crumble I did)

Oh and btw, most of my milk has dried up....darn. That's the best thing for this little guy right now. I need to blow this joint. Oh my. I am so ready. The nurse yesterday was so great about asking the docs if Loxxley could do a shift minimum which is basically him eating a  total of 200ml through out 24 hours. Sometimes he might take 55ml, other times he might take only 40ml. Today he took every bottle and 5 extra each time. Good boy!! I hate it here how they are so EXACT with everything and the numbers have to be just perfect and there is no budging. I totally understand that they need guidelines, but come on where are the patch adams doctors? Why can't there be any exception to 'the rule'? Not every baby is the same and not every thing works on every baby. They go on a general scale for everything....I hate it. When we have tried to shift things a little, Loxxley has done better and I had to push for that---remember this if you are ever a NICU momma. Your mothers instincts are usually correct!

One last thing. As I said in my last post, "It can ALWAYS be worse."  I just talked with a mother in the NICU as I often do. I am quite social-or maybe just nosy.  She sat and told me her story, I am not going to share it, but my goodness. Poor thing. My heart just broke for the major trials in her life. We both left each other agreeing that we are holding onto HOPE, when nothing else is left.
Hold on......

and ps. many of you want to know what you can do for me....your doing it by your comments and undying love!