I hate this part right here...

These past four days have probably been the hardest days of my whole entire life. When we received the diagnosis back in January I really thought that getting all the information would make this process a little bit easier and I could plan for what was going to happen. That could not be farther from the truth; I am not prepared, there are still so many unanswered questions, and I have never felt more frustrated in my whole entire life. I am not sure how long this post will be, but I am in desperate need of writing because my feelings are overwhelming. I apologize for the rawness of my emotions, but I am really struggling.

Thursday and Friday (May 9 and 10) - These two days were rough for both Josh and I. I had Sawyer via c-section and then he was whisked away. They took me to the NICU to see him once, but other than that I was in my hospital room. When they brought him by before transporting him to Egleston I was able to hold him, thank God. I think this has really helped me get by lately. Josh was torn because he wanted to be with me as I healed, but he also wanted to be with our son and he had to chose one over the other. He did come back and spend the nights with me in the hospital. Friday I was finally released (I say finally but really it was super quick). I was able to go see my baby that night and then we headed to our hotel. 

Saturday May 11 - We rested in the hotel, but headed to the hospital as soon as we could to see Sawyer. We came back and forth a few times to rest and have me put my feet up but we tried to see Sawyer as much as possible. We got some cute pictures and were able to tell him all about his family and how much we loved him.

Sunday May 12 - Well, this was my first Mother's Day, and it was so hard. I just wanted to scoop my baby up and snuggle and love him, but I couldn't. Josh gave me a gift he had picked out for Sawyer and we had lunch with my parents and brother. We also gave my mom and his mom a picture frame for some pictures of Sawyer. Sawyer got pretty upset a few times today and had to have some sedation medicine so he was kind of out of it :/ I am hoping he opens his eyes tomorrow so he can look at Josh and I.  We also met with the Fellow Cardiologist to discuss what tomorrow would hold and it didn't go as I expected.

He said that they would try weaning Sawyer off the ventilator to see how he does, and they may remove the tube if he does well enough. He is doing really well, but usually when he is on his stomach. Their ideal goal would be to send him home to get bigger before the surgery if at all possible. Josh and I don't think this is possible because he doesn't tolerate laying on his back for very long at all. The pressure on his lungs from the pulmonary arteries is so intense and he really struggles. Right now he lays on his tummy all day and is only on his back for one hour at a time, two separate times in 24 hours. We think this may be reason for them to do a surgery earlier than later but we won't be getting the answer to this tomorrow. It is kind of a "wait and see" process (another stupid phrase that also means "it depends"). After we talked to Dr. Nicholson (fellow cardiologist) we told Sawyer goodnight and headed out to update my parents. As soon as we left I literally felt like I was going to vomit.

We have so many decisions to make. Do we keep staying in a hotel, and how do we pay for that? Does Josh go back to work or does he keep using his little remaining time? How long will Sawyer be at the hospital? How are we going to make all this work? We are going to do whatever possible for our sweet baby, but it is so tough. I want to pick him up. I want to hold him. I want to be able to nurse. I want to be able to give him kisses on his sweet little lips. There is something that a lot of people don't understand about the ventilator. He has a tube in his mouth, and when he cries there is no sound. You can see him getting upset but you can't hear any cries at all and it is one of the most terrible things I have ever experienced. I can't even pick my baby up to comfort him. As I write these words I am sobbing. I am so frustrated and pissed off. This is not how it should be at all and I want to be home with my new baby doing all of the 'newborn' things but I am not. I haven't given my baby a bath, haven't changed his diaper, haven't given him a bottle, nothing. My heart hurts so bad and I want all of this to just go away. I wish I could trade places with him but I can't. I don't understand why this is happening and I feel like I am losing strength. 

I hope he knows how much his mommy and daddy love him. He is such a fighter and I know he will pull through all of this. I know that God has a plan, I do. I am struggling to hold on to His promises. I wish I could help people understand what I am going through but I can't. I feel like a terrible mom for not being by my baby's side 24/7. I am not posting this as a woe is me, but I have to get these feelings out. I have to write them down and not keep them inside. 

God has blessed me with a wonderful husband. I love him so much and am so thankful for all he has done throughout this situation we are in. He is taking such great care of me making sure I heal so I can be there for our baby. My parents and in-laws and just my whole family are such a blessing as well. They have been a great support for both of us throughout everything. I pray that God gives me the strength to get through these days and to hold on. Sawyer needs me to be strong like he is so we can get to the other side. 

I apologize for all the negativity. Please pray for Josh and I throughout these next few days and that we can start to get some answers and timelines for surgery. We are so thankful for the support from everyone. I know I say it a lot but it really does mean so much. It is one of the things helping us get through.

Love,
Ashlyn