Blue

Today has been a really ugly day for me. I am feeling hopeless, sad, angry and envious. I guess I woke up on the wrong side of the bed because I've felt down in the dumps since I got up this morning. I feel hopeless because Luke's swelling is getting worse and earlier today he was not producing urine at all. I know there is a light at the end of the tunnel, there has to be, but I just can't help feeling we will never get there. I have hated everything today. I just feel like I am at the end of my rope and I am nowhere near this nightmare being over. 

I am so sad because when I look at my poor baby lying there hooked up to all those machines that are keeping him alive I can't help but be sad. It's so overwhelming. Another reason I feel hopeless. I feel like there will not be an end to his life on machines. And it's hard to not be sad about everything. It's hard not to feel hopeless or like this will never end. 

I am angry because he has to be put in this situation. I don't care about me or anyone else, I care about that sweet innocent baby and all of the suffering he is having to endure. It infuriates me that I can't do anything to take the pain away. It infuriates me to be so helpless. I am angry because since he got sick and had to have surgery he hasn't been my baby. He's not my feisty, spunky, cuddly, loving baby he was two weeks ago. Now it's a good day if he even opens his eyes and moves his arms and legs. He was doing so well two days ago with his movement and now it's back to nothing. He didn't move at all today. I suppose the swelling is making it hard for him to move. It's so hard to sit there day by day, hour by hour and watch him just lie there. 

I am jealous and envious of two things. Last Thursday I had a doctor's appointment with the OBGYN who delivered Luke for my post op follow up. I was literally the only woman in the room not pregnant. It hurt my feelings so bad. I cried to myself in the waiting room. I grieved my pregnancy. I miss being pregnant. I miss the feeling it gave me. I was so happy with my sweet baby Bean inside me growing away. I miss laying my hands on my tummy and feeling him move. Now I have to watch him through an isolet and I can't touch him unless the nurse says it's ok.I am also jealous of some of the other NICU moms and their progression with their children. The baby next to Luke can sit up in his isolet with his stuffed animals. His Mommy can hold him. she comes in after work each day and scoops him right up and rocks with him for hours. I long for that. I crave it like nothing else in this world. I want to hold my baby so bad it hurts. Every time he gets his heel pricked for his blood gases and he gets so irritated I just want to hold him close and comfort him. I want to hold him close to my heart and never let go. The mothering instinct in me is not being satisfied and it is almost driving me crazy. I want to protect him from all of this and I can't. 

Luke's swelling has gotten significantly worse. He just continues to retain fluid. The fluid seems to absorb into the tissues causing the swelling effect. The problem is the fluid needs to stay in his veins so it can be moved through urine instead. And honestly all of this is so far over my head that I can't even begin to explain the process that needs to happen in order to achieve this. But basically because he is one one type of medicine for his blood pressure, he can't take the desired medicine they use to try and start moving that extra fluid. So they have to try a couple of different methods but hopefully he will start getting rid of this fluid and making urine. Poor thing. He just really can't get situated. So prayers are more than appreciated for Luke and his issues lately. Positives are his tube from his tummy is running clear and his stoma's are producing so that means he can start his feeds when this swelling is controlled. 

I find myself being incredibly thankful for all of the friends and family that have encouraged us through this difficult time in our life today. I know this seems like a blanket statement to make but honestly if it weren't for all the things that have been done for us then I don't know where we would be right now. Here are the specific things we are thankful for: cards, gifts for Luke, prayers for Luke, stories shared about preemies that made it with a normal life, food, love donations, keeping us company when we need a minute away, calls, texts, messages of encouragement and most of all the love and support shown to us by so many people. It humbles me deeply. Thank you everyone honestly thank you.