March 8, 2013:

I know everyone is probably wondering where I am and why there hasn't been an update recently. Honestly it's been another exhausting couple days and lots of events happening. Everyone is okay, just worn out. So, where should I start...

The last time I blogged RJ and I had a wonderful kangaroo time and were nice and relaxed. The next day, which was Wednesday, the morning xray looked worse. He had some right upper lobe atalectasis and his respiratory gas levels were a lil worse. They told me I should hold off on holding him due to his respiratory status. Of course that broke my heart... I stayed there with him holding his head and hands and trying to still be as close as possible. He was agitated and would turn his head back and forth during the day. He would drop his saturation level too. They would suction him and it would get a lil better. They had to go up on his FiO2, oxygen, level as well. In the afternoon I spoke w/ the nurse practitioner and she ordered another xray. It was less expanded, so she went up on his NIPPV pressures. Robert Facetimed with me around 8pm right after his ED shift. Robert was able to soothe RJ and put him to sleep. He looked really peaceful and we felt better about his status. Then around 2am Thursday morning I got a phone call from the NICU saying RJ was looking worse. He was mottled and ashen looking in his color. They had to go up on his oxygen levels and he was just struggling to breath. He was starting to wear out and they were probably going to have to reintubate him. They wanted to do it before he got really tired like last time. My tears didn't even hold off until I got off the phone. I woke Robert up and after I hung up the phone I just cried.... Neither of us slept very well the rest of the night. We just lay there with our brains racing. An hour or so later Robert called to get an update from RJ's nurse and shortly after that the nurse practitioner, who'd called the first time, called to give me an update. She said they ended up doing a sepsis workup b/c he had a lil hard time recovering after the intubation, but was doing fine now. So when I went to see RJ later that morning, I knew they wouldn't let me hold him since he had just been reintubated and they would want him to have a day to get re-adjusted. He looked less agitated after being reintubated and wasn't as tired. He opened is eyes with his care times and was still feisty with us, so that was encouraging. He wasn't lethargic like last time when he was reintubated.
Thursday was also a tough day for me cause I went to see the stroke MD for a continued follow-up regarding my dissection. He showed me the images and it was crazy to see the cut in my right internal carotid. He showed me a couple different views. He said there is significant narrowing or stricture of that vessel and he wants to get an angiogram to look at the blood flow better and rule out if there is a pseudoaneurysm (a leakage of blood forming a pocket around the carotid artery. It's not bleeding out and it's presumably not getting bigger). Of course I was by myself b/c Robert was at work. I was kind of numb taking all this information in. It was a little overwhelming. I hate needles, like a lot of you know, so the thought of a needle and catheter having to go into my groin just gives me the shivers. I'm making sure I have a great Anesthesia team on board to give me some good meds so that I don't feel or remember the whole experience. Anyways, that test is scheduled for the end of March on the 29th. Please say big prayers that there is no pseudoaneurysm!!! Needless to say, we were exhausted Thursday night and I didn't have the energy to blog after being on yet another emotional roller-coster.
Today started out brighter and better with the sun shining and we were optimistic about holding RJ. Turns out we got to kangaroo for 2.5 hrs!!! That's the longest he's let Robert or I hold him!!! It was so rewarding after the past couple tough days. A couple times he would pick up his had and move it around like he was agitated, we would suction him, and his oxygen level would get better and he would calm down and fall right back asleep. It was truly precious.
They are now giving his feeds over 1.5hrs  every 3 hrs and he's been tolerating that well today. One of the blood cultures came back positive, so they are waiting till the final read before stopping the Ampicillian and Gentamycin they started right after reintubation. Yesterday he got a couple different doses of blood, so his color looks a lot better today as well.
Tonight we had some grandparents in town!!! My mom saw him for the first time and was able to be back in the nursery with me while I gave RJ a bath. Robert and his parents were on FaceTime watching. Robert's mom switched out and came to help put lotion on him and then Robert's dad came back to hold his hand before I wrapped him up like a lil burrito. It was a very rewarding evening and I felt very satisfied and complete getting to DO all these different things for our lil son. It made me feel like a mommy. :) Robert and I tucked him in, put him to sleep, and quietly left. Sigh... :)