Day 48

My little man....he is so adorable.. Chris got to hold him today and then it was my turn to hold. Liam loved every minute of it and so did we. Its amazing how his nurse can work around us. They are able to change his diaper, suction him, give him his meds all while we are holding him. The only reason I gave him up today was because he needed an abdominal xray. They did restart his feeds at a very low dose but just after a short while of being back on his belly became firm again. The physician said it looked like gas, they discontinued his feeds again tonight, hoping to give him a break. The physician listened to his belly and he does not have much bowel sounds. The poor boy has never gotten a real chance to eat for an extended period of time to help his intestines work properly. His weight was significantly up today so they started him back on another diuretic to help with the fluid. He is back to looking more like me again. ( Chubby cheeks). :) he had another fun day full of visitors. Everybody from yesterday came back to spend more time with him and Aunt Dana, Uncle Jeff and cousin Bryson came today along with my Aunt Becky Aunt Dana still recovering from her own surgery and Uncle Jeff coming from a conference. All met up to see baby Liam. Bryson interacted with Liam today and held his hand. So heartwarming. I will never forget that moment ever!!!!! (wait till you see that picture- thats a framer). Liam was awake for a couple hours today. I got a lot of time with him. We did some exercises and played patty-cake. He was a very happy boy today. Much more comfortable then yesterday. Unfortunately it's at the expense of not eating. No changes made on his ventilator. I wish he could catch a break. He just needs one!!

God had special plans for me even before I was born
Galatians 1:15
There is just one
Just one who is you
That makes you quite special
It's so very true
God made only one
Just one cause he knew
You'd have some important
Just-you things to do.

Day 47

Liam gained more weight from yesterday. His swelling in his belly has gotten worse. Very distended most likely from his feeds. This evening i spoke with his physician about him being so uncomfortable and he looked at his belly and said we need to stop his feeds for awhile. Hopefully they can restart the feeds tomorrow. He also had more fluid collection around his lungs. All this accumulating was making it harder for him to breath. They increased his vent settings, trying to make him more comfortable. He had a rough day today, but thank goodness he slept for most of it.
He had lots of visitors today. Grandma and Grandpa Mirone and Aunt Amanda were here. Aunt Amanda read him books and he fell right asleep. My Aunt Peg and Grandma and Grandpa Curtis also were here to show Liam some love. Aunt Kathy and Uncle Paul came up with delicious donuts for all of us. Our wonderful friends Jen and Ken also came up to visit with him. They love sitting by his bed and holding his hand. His nurse today was Christina, she is a lot of fun. Liam had a Michigan blanket on today for the homecoming game and she claims she accidentally got it wet but She is a buckeye fans and we know she totally did it on purpose. :) His nurse Molly was off today but she made cupcakes and brought them in for us and to come visit. She is a total doll and she loves Liam very much. He loved all the love and attention. He is one lucky guy to have so many wonderful people.

Day 46

As I sit here next to my Liam's bed and blog. Chris and I still are in awe of all of your support. My little boy is loved so very much. Again, Thank you for all of your support. We love all of you!!!!!! We got to hold Liam again today. It is such a joy getting to hold him. I held him for 3 hours, the only reason I gave him up was I figured I needed to share him with his daddy! 😃Chris snuggled with him for 2 hours and he was sweet enough to let Aunt Amanda hold him after. She is the one person that has not got to spend as much time with him as she deserves. It was a long day for him. He was telling us by his oxygen levels that it was time to get back in bed again. While I was holding him I just examined him. His long fingers, the wrinkles around his knuckles and wrists, his perfect nose and lips. I admired all of him. It's so crazy how he was inside of me, how Chris and I made him, so amazing the miracle of life is. He truly is perfect!!
Not much changed today. Still has drainage out of his chest tubes. Went down a little on his vent settings as he tolerated. His chest X-ray was still pretty bad. No significant changes. He was awake for a long time today and I took advantage of it. I read him all the posts we received on Facebook, on my blog, all of you that changed your profile picture. I want him to know how much all of you love him like we do.

I am so overwhelmed by all of you. As I scroll through Facebook this morning I am in awe of all of you! The red heart, showing love for my little boy is heart warming. No words can express how I feel by all of you. Chris and I get out of bed everyday because all of you help us, support us, pray for us, and give us strength. I still cannot fathom the idea that this is us, this is our real life. We read all your posts and cry with everyone but they give us the strength. Chris and I created a little boy that has touched our hearts and I feel like he has touched all of yours. Thank you. I could never repay all of you for showing us so much love.

Day 45

Liam slept peacefully all day today. Output drainage is still significant and They weaned on his vent to see if he could tolerate. Before we left this evening we were told his blood work was not that great so don't be surprised if his vent is back up tomorrow. Still praying for a miracle. But also praying for strength and courage and peace for Chris and I and our families. We had a meeting today with the palliative care team to discuss things that we can do to Celebrate Liam. We are setting up a professional photo shoot for Liam. They can actually photo shop all his tubes and make amazing memories for us. We can actually get Parker involved and get him into the hospital. Thats a dream of ours. Liam and Parker, the loves of our lives together. Of course, holding him as much as we can is another must for Chris and I and possibly taking him for a walk. The care team does all these wonderful things for families.
In regards to his health, all we can do is wait to see what happens over the next few days We will not regroup with his team till Tuesday. We will know more then on what the doctors think.

Day 44

A long day for Chris and I and our entire family. Liam did great today with his surgery. He continues to surprise us. This little boy has been through hell and back and fights his ass off everytime. Praying for a miracle. Miracles happen every day. But back to our family meeting today We have had such high hopes for Liam through out his short life and its hard to hear that it all might come to an end. how do Chris and I make these decisions that will impact us and Liam for the rest of our lives. We are going to take day by day, moment by moment and pray that God will send us down the right path. Our wonderful nurse Molly said today Liam and God are in control and they will tell us what is right.
Chris and I do not want to be sad, we want to celebrate Liam while we have him. His time on earth might be limited and are hearts are broken but we have to live in the now and enjoy every moment and we still have our hope and our faith. We will fight until it becomes unfair to Liam and his quality of life. Please continue to pray and I cannot express how amazing it is that all of you have supported us and have taken the time to get to know Liam and love him as much as we do. He will change ALL of our lives forever.

Update

Liam is out of surgery. He did very well, like he always does. No problems at all. Now we wait. We will see how he does over the course of a week or so. We need our miracle. He is everything we could of hoped for and more. He has fought so hard. We are so grateful to all of you that have followed our Liam's journey. Please continue to pray everyday. We had a meeting today regarding Liam and his care. He is not going down the right path. Options have been laid out for us and there are decisions that Chris and I will have to make in the near future. But they cannot take away our hope.
Chris and I both got to hold him this morning. It was the best moment of our life. Love to all of you! Xoxox