I notice this more and more everyday! yesterday, kyle ate 26 ccs at his feeding and today he ate 25 ccs at his feeding. and so he takes the rest (38ccs total) through his tube. This is not even b/c he tires out but b/c he only gets 30 minutes to try. This is with good reason. who would have though about all the work it takes to eat. Kyle has had one brady at the beginning of each try. this is just him trying to get organized with the suck, swallow and breathe. He doesn't have them after that. He does de- sat some but always self recovers when we take the bottle out of his mouth. I am having to watch him and try and learn to tell when he is needing a break without the monitors - harder than it sounds! they stop him after 30 minutes b/c he can get really tired out and then have more bradys while he sleeps. he can stop gaining weight b/c he is using so much energy to eat. all the things we don't think about.
Kyle is doing so good that his NP decided he could take a bottle 2 times a day! He is doing so great. and I must say I LOVE feeding him. He is so cute he sucks and swallows perfectly and then he gets to where he is going to fast and forgets to breathe - but he does so good that he will stop sucking and take 10 really quick breaths. almost as if to say "this is soooooo good!" It really is adorable.
Kyle LOVES to be held, he LOVES his paci, he LOVES to be swaddled. He looks adorable! today he was wearing a hat from a little bug outfit that has antennas on it! :)
He got another echo friday. we should have the results on monday or tuesday. this will tell us more about the clot in his heart. if it is in fact a clot, scar tissue, getting bigger or smaller, where in the heart it is and if this is a problem. now sometimes they do come back and just look at you and say "we don't know" alot but I am hoping for information.
Kyle has his eye exam last wednesday again - he has NO ROP and NO plus disease. This is also very unusual! He is doing great and you can really tell that he can see so much better now. Dr. Hitner (world renown in her field) moved him to every other week check ups! this is great news!
let's see - what else amazing can I say....
oh - jack today (he has been saying sentences now) looked at me while we were both having a yogurt snack and said "lu you .... ma-ma" the sweetest thing I heard all day. kyle's burp at the end of his feeding runs a close second!
as far as me - there is so much on my plate right now that I really need to be doing 800 things other than journaling my thoughts - but....
God is changing me - continuing to restore I suppose. I have been really struggling spiritually with modernized christianity and our perception of God. I have been at a loss in prayer, confused by our christian works, and evaluating my thoughts to what I take in and pour out in ministry.
I think all these thoughts are beneficial and even from the Lord in my life but in my circumstances they have been enveloped in negativity. The NICU is a hard place to be positive. not hard to stay positive on the outside b/c we can smile and ask about the other babies and want to stay positive and upbeat what some of us call "believing". but it was pointed out to me tonight that my lines have been blurred in the difference between faith, hope, and well wishing. all of this vs the spiritual gift of healing. God's mercy. God' glory.
The same prayers can't just roll off my tongue anymore. The weren't empty then and they are not empty now but God is stretching me, painfully stretching. I'll share more on this later - when my 2 year old doesn't have a birthday party the next day I need to get ready for!
point of today is - I have to smile again, I need to be up and happy, I need to recognized where I am is ordained not orphaned. I have got to fight this negative. not with will power and not with focus - that won't work. the blood of jesus has made me new. clinging to that will work. what God is doing even thought it hurts so bad i can't see straight, even though it brings confusion and guilt b/c it shouldn't hurt, even though I am angry, feel betrayed, alone, worry about those women that are hurting so much more than me tonight, EVEN THOUGH ALL THIS - I reconcile - it is of God. It does glorify him. I believe you God. now would you help me with my unbelief.
smiling of course.