a better day...

After last night I prayed that God would open my eyes to the little blessings He is giving us through this struggle. I prayed that He would help me be thankful and rely more on His strength when I am weak. God knows the plan He has for Sawyer, Josh and I and I am working so hard to trust that plan and know that it will be the best. 

I want to start by thanking everyone for reaching out to me, offering encouragement, and especially those of you who have sent donations to help us off-set costs during this time. We are so appreciative because these times are definitely costly and very expensive, but we are making it work because there is no amount of money that matters when it comes to our baby. Thank you again and I promise to keep you updated as much as I can!

We headed to the hospital this morning around 11:30 AM to see Sawyer for the morning. Today was Emory's graduation and I was so worried that they would have used the parking deck and we wouldn't be able to find parking. I prayed that God would allow us to find a spot so I could go see my baby. We pulled in and the lot was unfortunately full. They even made the car in front of us turn around. We asked the attendant if we could just try to find something and she started to say no when another attendant came running over and said, "Let them in, they can park in the oversized vehicles spot!" - I was so happy! When we got to Sawyers bed he was laying on his back! We got an update from his day nurse Mallory who said that they were going to continue to leave him on his back because his numbers looked good and they would continue to adjust the ventilator settings. He is up to full feeds now - 20 mL! Most of his feeds are coming from me and they supplement with formula when they don't have any of my milk to give him. Josh and I were able to catch a time when he needed a diaper change and I was able to do the honors! I almost got pooped and peed on, but he was just successful with the pee - so happy to be peed on :) We noticed he was having to breath pretty hard even though his numbers looked good. I made a comment to the nurse just so she knew how we felt about the fact that he looked like he was struggling.We left then and went to lunch.

Love me some baby feet!

Diaper Change!

After lunch we went back and he was still on his back! He was still breathing pretty hard but his numbers looked good. I noticed that the bedside next to us had a good amount of doctors and the mom and dad were standing near their daughter. Our nurse told us that they would be doing a surgical procedure later and our pod would be closed down until they were finished so we wouldn't be able to see Sawyer. I desperately wanted to reach out to the family because they had been upset earlier in the hall, I just didn't know what to say. We left to meet with the Social Worker and that took about an hour. We were going to go back afterwards but we noticed that they were getting ready to shut the pod down. I saw two "biker men" in the lobby area and they were pretty upset (they were with the family of the little girl in the bed next to Sawyer). I went up to them and told them I was sorry for all they were dealing with and that we were praying for them. He then told me that the little girl, I believe her name was Chesney, was going to be with Jesus later that evening. I totally lost it. He then prayed over me and Sawyer and prayed for healing. It was so amazing to have someone dealing with that to pray over me. Josh and I couldn't see Sawyer so we headed back to the waiting room where we hung out with my parents and also sat near the family of Chesney. I was so upset for them. That was probably one of the hardest things to sit and watch them grieve. 

The unit shuts down at 7AM - 10 AM (doctors do rounds) and then from 7 PM - 8:30 PM (nurse shift change) every day. At 8:30 we were able to go back and see Sawyer again. It was upsetting to see the empty bed next to him when we walked in. He was laying on his tummy and seemed to be breathing fine. His night nurse was Patrycja (I think that is how it is spelled!) and she gave us an update. They have been taking blood gas levels to see how he is responding to the ventilator changes and they were the same and there had been no changes in ventilator settings. Josh and I stepped out and let his parents and my parents have a turn and then I took his sister back to visit! Josh came back to switch with his sister and the fellow cardiologist was doing rounds. He didn't really offer his opinion but told us basically the same thing - they would like to wean him off the ventilator and send him home to grow before surgery but they know it might not be possible. They will spend the next few days trying to do that and see how things going. I asked how long they would keep him on the ventilator before they realized weaning just wouldn't work but he didn't give me an answer :( His left lung has some fluid on it and I can feel it on his back while he is breathing and they have had to suction him a lot. While we were back there Sawyer opened his eyes! This was another blessing! I have been wanting to see him open his eyes for so long. Sometimes they have to give him some sedation and he is usually sleeping every time we are there, but not tonight! He was looking all around at Josh and I and my heart was so so happy :) I love that little boy and I know he was recognizing his mommy and daddy's voice.

My mom made this adorable pillow for him!

Sawyer has open eyes and Mommy has a happy heart!
I think he was in the middle of a yawn :)

Tomorrow is going to be a long day! Every day you can request to be included in rounds, but you have to be there at 6:45 AM to sign up :/ Rounds are where the doctors and nurses will discuss the goals for treatment for the day and we can ask questions. We will sign up and then go to the waiting room and they will call when it is our turn. It could be early or it could be later (all the way til 10 PM). They had a cath conference today with the surgeons and we know they discussed Sawyer so hopefully we will get more updates on their goals and I can get answers to my questions. I don't care if I have to ask the same question 45 times I will get answers. I will also express my concern of his labored breathing and other things. Hopefully we will get answers, if not I will keep asking! 

Please continue to pray that the doctors make the BEST decision and that Sawyer continues to fight. I tell him everyday how many people are praying for him and how much everyone loves him. 

Love,
Ashlyn