June 10

Everett's doctor started the day in debate. She looked me in the eyes and said she didn't know what to do. Everything with him lately is making a decision between the lesser of two evils. Always. That's how her decision making must go, it's so unnerving. I love Dr. Brooks, I trust her, she has Everett's best interest at heart, even if I don't like to hear what she has to say or do. Today, Michelle was back as his daytime nurse, she was perfect for everything he had to deal with today. She is so soft and gentle and really treats him like the sweet little baby he is. That doesn't always happen believe it or not.

Today she decided to take him off his vent. It was really the only way we would know if he needed it or not. After they extubated him, he took about 15 scary minutes to stabilize. It felt like an eternity. I've never felt such fear. I held his hand tight and talked to him, ignoring the beeps, sirens, red flashing lights the best I could. I concentrated on his sweet face and reminded him how strong he was. I tried to pour strength through my hands onto him but I have never felt so weak and scared in my life, I swear his little hands and eyes gave ME strength. I have a strange feeling this is how life with Everett will be, him teaching me how to be strong. Watching him gasp and fight broke my heart but he continues to show me his strength and drive for survival. I don't know where he finds it in such a little body to fight so hard, but I'm so extremely thankful he is not giving in. I'm so proud to be your mommy.

The next two hours were up and down and all over. He could be struggling because he needs the vent, he could be struggling because he's in withdrawal, he could be struggling because he has a brand new infection he is fighting today, he could be struggling because he is scared out of his mind, because his lungs aren't developed, or because of the pneumonia, or because he wants to be in his mama's arms. There are just too many variables to know which it is, so the doctor and nurses try to tweak everything to get things just right so he can become stable. Although his breathing is still very shallow and extremely labored his blood gas tests keep coming back good. That is SUPERB. He has had three and all look great, this tells us although he's fighting hard to breathe he is tolerating it. He started a new antibiotic today, a stronger one than before, to help him fight whatever is going through his poor baby body this time. Maybe he was never well from the first attempt, maybe it's new, more things we don't have an answer to. They took lots of samples today to test to try and narrow it down, we don't get the results for a few days so they've started the antibiotic now and will take it away if he doesn't need it. They're very proactive which I love. I hate him on more medicine but I'm sick of watching him suffer. So, as far as his breathing, he's working his tiny, bubble tushy off trying to breathe, each and every breath. We are hoping he doesn't tire. We're hoping he has the strength to keep fighting on his own so he doesn't have to be intebated again. I'm told they're leaving him "alone" for the night, he has dealt with enough today and he has a lot on his plate tomorrow.

Another "lesser of two evils" decision that needs to be made tomorrow is what to do about his arterial line and UVC line going into his belly. Both are beyond expired. Although both are at GREAT risk of infection at this point they don't think either are causing his infection now since his arm and belly look and feel healthy. However, for three days I've been told in the morning they're coming out. Then by the end of the day the call is made to leave them in for "one more day". I'm not sure how many "one more days" we have left. He needs these lines for food and medicine. They stopped giving him breast milk for now. He was partially digesting it, they were trying to "push it through" :/ poor belly, but his residual was more than half of what they gave him so they decided to avoid any feeding issues with everything else going on. His belly tolerated it well, meaning he had good "bowel sounds" but there was a lot of air coming back up. I let the doctor know that Clara has bad acid reflux and had to sleep sitting up until 7 months. The doctor values what I have to say, she asks me how Everett is doing since she knows my eyeballs done leave his little body, and she really listens. I appreciate that a ton. Either way, no more milk for now. Tomorrow, they'll need to decide what to do about his lines. I'm dreading it. I do not want to have to see him messed with anymore. The PICC team was on today and I don't think is tomorrow. time will tell.

I like his nurse that is on tonight. We had to speak up and ask that last night's nurse not come back. She had turned his temperature on his bed up too high. So, they thought he had a fever this morning when I went in. Then they realized it was an error on her part. It did lead them to test him for infection, so maybe it was a happy coincidence?! However, I don't like thinking about my baby baking on that account and she wasn't helpful last night (for many other reasons) at all, which is why I got no rest last night. Like I knew she was going to do something wrong. It was very clear she was clueless. I regret not going in and being with him with the vibe I had, from now on I will. Bonnie said we can call day or night and she'll come over. Thank you Bonnie, just knowing that puts my heart at ease!  Maybe with the nurse I trust tonight I can rest up for another big day with this little guy tomorrow.

Clara had three babysitters today since my 'all day stay' was unexpected. Bonnie started Clara's day for us, then Nancy took over until Mimi could get here. I haven't a clue how we are so lucky/blessed, whatever you want to call it, to have all of these wonderful people by our side. Lisa took yesterday. Doe and Michael will have her again tomorrow. My family has been here to help and everyone is willing to come at the drop of a hat. Nancy had a tea party with her new bathtub tea set Siobhan sent and it has two cupcakes. Clara now loves cupcakes so Nancy is baking her some now as I type. Spoiled, we're so so spoiled. I've gotten packages, cards, calls, texts, emails, those not calling and texting but wanting to...the list goes on. The support we've felt from ALL over is insane. If I haven't called on you yet, I'm sure I will be. We cannot thank you all enough. It just isn't possible. Our support system is what is getting us through, thank you, thank you, thank you.


Then, when we get home, and are sad to be away from Everett, Clara makes us smile big and helps us escape. Dada got home tonight. She walked over to him and said, "Hola, nice to meet you," then put her hand out for him to shake it. And she takes the worry away, even if'it's just for a few seconds at a time. Where she gets this?! One doesn't know. Thank you sweet baby girl, you're keeping us together, and lighthearted.

I have a picture of Everett from today and two selfies of us, but I'm too lazy to get off the couch to get my cord to upload them. Maybe tomorrow. Goodnight, and thank you for caring enough about our little man to read up on him.