It was a good morning I am continually amazed and thankful for the passion and love of these people for the work they do. Phoenix would not be living the life he will outside of all these peoples love and care. He had to have his wound care visit yesterday which is them changing the bandage and cleaning it, it was incredibly painful for him and hard to watch, my heart breaks for the amount of pain he has already endured and all that is yet to come. My hope is in that he will have a life FULL of happiness and love that will far outway these days. He is growing new skin already, that is great news, as they are hoping for that to grow and fullly cover over his wound, with the help of his platic surgeoun (crazy). It is really large, as everyone as continually stated, but after seeing it and talking with so many dr.'s I am understanding the rarity of this.
My Pain is decreasing daily and each night I am able to get more sleep, which truly makes all the difference in the world. Our dear friends Jamie and Gabe came in yesterday afternoon and they have been a blessing and encouragement in everyway, I love the provision of God even in friendship, it is so refreshing.
Mike and I spent the afternoon there yesterday and returned early this morning, yesterday afternoon Phoenix had to have a pic line and art line, put in, which are bascically very intense iv's that are threaded underneath your skin to your heart, it is the most efficent way to get Iv to him, it was a 4 hour process, because he can not lay on his back, it makes all of these process's much more difficult for everyone, including him. Needless to say, yesterday was an exhausting day and we left in time for dinner so that he could get some rest.
We returned this morning and he was bright eyed, they took him of the pain killer drip today and are slowly weaning him from the oxygen, so that he can be off some machines and they are trying to prepare him for his new bed, because it is a slow moving hydraulic bed, they are trying to limit the lines in him. He was doing great, lifting his head and responding to Mike and I's voice, these are the moments we wish we could hold him. I realize all that we take for granted on a daily basis, not just with babies but with those we love and with those who need to be loved. I know this, when we can hold him,when he's home with us, we'll probably never put him down, even in these heart aching moments agaon I turn my eyes to God holding him.
We came back home to spend sometime with Rowan and Jamie and Gabe. Then I took a nap and they all went to the pool. We returned to the hospital at Rowan's nap time. Phoenix was under a light with these adorable goggles on, his billyruben is a little high and so they are trying to get rid of the jaundice, he has been on a feeding tube with my milk for almost a full day know and they are hoping the combination will bring his numbers down. Also we got to meet his Urologist, whom is the Dr. that will help us learn how to cather him multiple times a day. Children with meningomyelocele (spina bifida) have little control or feeling of there bladder and bowels and basically need assistance and surgery to help them with these functions. He was telling us that 50 years ago most children with spina bifida died of kidney failure because of the failure if the bladder to function, but today that doesn't happen. That is a incredible to me!!!
Rowan has been AMAZING, Mike and I want to thank everyone for praying for him and wanted to update you on him. He has become more and more content daily and is very gentle and nurturing towards me since being home. He turns 2 tomorrow and I feel like God has placed such amazing strength in him and am so excited for him to be a big brother. We are consistenly blown away by his responsiveness to the friends and us eachday he becomes more of his own little person. It is wonderful to watch him grow up and appreciate the miracle that he is.
Mike and I have realized over and over again the miracles in medicine and that Phoenix would not have much of a shot at a life outside of all this intervention and speciality care that he is receiving. We are consistently amazed by the hand of God in all this and are beginning to see some of the cries of our heart being answered. We are soooooo in love with Phoenix and feel overwhelmed with joy for the life he will have!!! We continue to take it one day at a time and chose to see the blessing in each day and enjoy his every sweet movement.
There are so many things that we are praying continuosly for. We really desire to see God move in Phoenix's little body. Still we do not know what his mental capacity is like, and though we are prepared and grateful for anything we are asking God that he would be as brillant as the next child and able to experience learning and growing with other children, Mike has a picture in his head of him being quite witty. We are also praying for his bladder and bowels that we will see healing and improvement there and that his wound would heal without complications and quickly, his feet would take on better shape and loosening would happen in his legs as the physical therapists work with him. Also, there are a few differnet programs that we are in the process of waiting on to cover the excess financial strain (such as gas, parking, medical equipment...) that come with having a baby in the NICU,that all those process' would move smoothly and quickly is our prayer.
Ok that was 2 days off of blogging, I know the details will get less daily and we will try and update as much as possible. Thank you all for your love and support and encouragement and prayers, they are the breath that we breathe some days and the strength of our fight, we love you and are amazed by your kindness. We are reaping everyday the benefits of your love and prayers and these miracles that we have seen and will continue to see are because of your FAithfulness.
love.
Megan, Mike, Rowan and Phoenix
awwwwww I am so happy things are going well! I bet he is so precious to watch in all his little movements. Thanks for continueing to share!
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