Thank you everyone for the positive feedback about the blog. Several people have said that this has helped them feel closer to us and feel like they are right there with us. This blog has been comforting to them. I enjoy helping others and making people happy so as much as I thought this blog would help me I'm happy it's helping others :) I know several people from The Moore Center are reading this blog and know that it's very comforting to my family with how kind and supportive you all have been.
Ryan update: Ryan had 4 nurses that were off yesterday call to check in on him. This little nugget is seriously loved so much. We are so thankful!
Wednesday Shawn and I took a serious ride on what everyone in the NICU calls a roller coaster. Sounds like something you can prepare for right or know what to expect... Ummmmm no. Rounds went well wed am and Ryan overall had a good day. He was comfy in his little cocoon that Kim puts him in. Legs in tight, on his belly, head to the side and arms tucked in. Again so so cute I want to squeeze this kid every time I see him. When we came back Wednesday night to hang with our man they got the spinal tap results back and it was bloody when they did the tap. They were checking to see if this infection he is fighting was in his spinal fluid just to be sure. Reason 564 why we love this place, they dot every I and cross every t. Perfect care for a type A personality like myself. The NP pulled us aside and told us that Ryan has meningitis, or so they thought, and that Dr. Bulanoswki would be speaking with us more in a few minutes. We spent the next 30 minutes thinking he had meningitis and this 30 minutes was pure hell to say the least. So we go from good day to, oh your son has meningitis.....Yankee cannonball here we come!!! Thank good for my husband during those 30 minutes- Shawn is an angel sent to me from God. I have been saying this since the day Ryan was born. I knew I loved him and he was special but Shawn is so strong and knows just when to pick me up when I need him most. Ryan and I are lucky duckies.
After speaking with the doc she said that the tap showed one bacteria colony growing when it normally would show thousands if it was meningitis. The 1 colony could be from the blood since he has an infection there. So either way as a precautionary they are treating him like he has meningitis.
Now we wait for 2 negative blood cultures before they can put in the pic line again. Saturday the earliest. Poor kid has had a lot of iv's already :(
We were told Ryan's PDA is moderate but this will be treated most likely after the infection clears. His PDA to be open is common for someone like Ryan. His white blood count is going down which means his infection is going away-thank you God. This kid needs a break!
Thursday I got to kangaroo Ryan for an hour and a half, skin to skin....pure heaven. Google kangarooing. I got to REALLY hold our baby for the first time since he was born. He did so well they said that we can try kangarooing daily, YES!!!!
I still need to get his birth certificate and go to the New B town hall which I have been trying to do since he was born... Sounds like an easy task..... Not for a small town that has people that work like 4 hours a day 3 days a week. I was so happy that Wednesday I found the time to swing in on the way home when they opened at 12. I rearranged my pumping times, when I left the hospital that day, I was feeling great. I get to the town hall and there is a little yellow sign that says " town clerks office will be closed Wednesday may 13th so our workers can attend a conference." Oooooookay. So that still needs to be done.
There is a group of moms that get together every week to check in on how things are going. It's called little miracles and I enjoy going. I have connected with another mom so it's helpful seeing her around and we always check in how each others children are doing. She has twins in the NICU and is such a strong person. I can't imagine going through this with 2 kids at one time although I never imagined I could do this with one. It's hard when I see Ryan's stats drop, I have to sit down and regroup since I almost pass out every time. I have become obsessed with looking at his monitor for his heart rate and oxygen level. Shawn forces me to look at him and turns my head when I try to look at the monitor when it dings. I know these "episodes" will happen a lot over the next 3 months but after seeing how the other mom has handled her bad days, it gives us hope and courage that we can do this.
I can't remember if I wrote this already but Shawn and I have said often that we are able to be so strong because of the support around us. The texts, messages, calls, emails, blog comments help us get through our days.
People have asked what our average day look like. Our tentative schedule, depending how the boss feels :) That's Ryan not Shawn.... I get up at 5am to do "mom things" and call Ryan's nurse to check in on how his night went. I love calling this early because they also weight him at 5am so I'm anxious to hear this number. We measure our kid in grams---amazing right? After I get up and get ready for the day and I try to get to the hospital for 830. Rounds can be anywhere from 9-11 and I want to be there for that. Then I hang out with Ryan and leave about 1ish. Go home to eat lunch and take a quick nap and pet Sully :). I wait for Shawn to get home, we eat dinner, go back to the hospital for 530/6 and stay until 830 or so but this week we haven't been leaving until almost 10. If Ryan has some stuff going on then Shawn has been taking the day off from work to be with us which is nice. I have to get up every 3 hours to do "mom things" but I don't even care. I don't think I sleep from 9-5am, I have been able to sleep more than I thought I was going to though. 2 hours at a time is a blessing! Who need sleep though right? We can sleep when we are dead!
I think I covered enough random thoughts in this post. Ok one more thing, at 8:37 tonight Ryan will be 2 weeks old so please say happy birthday Ryan at some point today :)
My email is ap11784@gmail.com I know some people have asked for it.
One day at a time
Love
Andrea Shawn and Ryan
