Everyone Is Hanging In There

First, I'll fill you in on what I've been up to, as well as my husband and his parents. As odd as it sounds, laying around in the hospital doing nothing is somehow very time consuming. I haven't had much time to update you all, so this will cover the last couple of days.

 I was offered the option to be discharged on Sunday, less than 48 hours after the c-section. They don't typically let you do that, but my doctor was so understanding and he knew that I wanted to get to Lucas as soon as I could. But as much as I wanted to be with Lucas, I decided to stay another day in the hospital because they didn't get me up and walking until after 7pm Sat night and I just didn't think I would have the strength to make the trip all the way to San Francisco (an hour away) much less get around a busy hospital. I made the right choice. It was difficult even a day later. On top of the pain and frustration of recovering from a c-section, I'm also trying to pump breast milk for Lucas (TMI? Sorry...but it's the most natural and best thing I can do for my son right now). My body wasn't ready to produce this milk quite yet, so I'm basically forcing it to. Every tiny bit I can get, we save and take to the NICU for them to freeze. When Lucas is ready for it (hopefully soon) it will be there and ready for him. That continues to be quite an "adventure".  Ryan's parents have been so supportive. They got a hotel room about 30 mins from Napa while I was in the hospital. We only have one rented car for all of us right now, so they stayed in the hotel and Ryan spent part of the days with them running errands, and making arrangements/plans, and then he would spend the nights and mornings with me in the hospital. They are staying here in California until Thursday to see that Ryan and I get settled in somewhere long term. They've been such a help. Ryan has absolutely been AMAZING during all of this. I don't know to put into words how lucky I am to have him by my side right now. We seem to be on the same page with our plans and emotions and he's giving me all the support and love I need while I'm trying to recover. I love him more than ever. 

Lucas did pretty well in the NICU the first couple of days. They needed to draw some blood from him since of course they have to test about a billion things. Then they ended up having to give him more blood shortly afterward. He handled it well. He did very well on the breathing tube for the first couple of days. They weaned it down to the lowest setting possible and he was doing so well they decided to pull the tube and put him on the cpap mask instead which is a way to help his breathing, but it's a much less invasive method. This was set at about 35% oxygen. They also weaned down his dopamine (medication responsible for maintaining his blood pressure) and he did well without that. His stats did drop from time to time, which is to be expected, but they didn't have trouble resolving it when it happened. They do ultrasounds often on these tiny babies because they are so fragile that they can develop bleeds very easily. The first ultrasound was clear.

Sunday, I received a call from the NICU for my permission to place a PICC Line. He had a few IVs that were inserted into extremely small vessels and those would wear out very quickly. A PICC Line is similar to an IV but it is inserted through his upper arm and went almost to his heart. This is a way to deliver the vital nutrients and things in a better way. I don't always understand the exact explanations of these things, and as scatter-brained as I am right now, I forget very quickly after it's explained to me...but I think I got pretty close. They did have to adjust this PICC Line placement once as well.

Today, Monday the 30th, I learn that they had to put his breathing tube back in last night. His stats just dropped too much and he needed the help again. Anytime they do a procedure on him and stimulate him too much (preemies in general) they tend to not be as stable afterwards. He is, however, still off of his BP meds and holding steady for now.

We finally made it San Francisco this afternoon after leaving Napa. I was extremely nervous about seeing Lucas. I almost felt like I didn't WANT to see him because I knew it would be scary and emotional. I tend to not want to deal with things like that and just sort of shut down. But I knew I had to and I knew I need to be strong for my son. It was the hardest thing I've ever done in my life...seeing my son hooked up to so many tubes and machines. He was so so so tiny...tinier than I expected. So tiny it scared me. I broke down several times just looking at him. His little body was almost all the way covered up. I could see part of his legs, a tiny hand, tiny feet (he totally has his daddy's feet and that's so cute). His whole face and head was covered because his bed is next to the window and he's not a fan of the sunlight. And too bad his little eyes are still fused shut because being on the top floor of the hospital, he has one of the best views of the city! He's a little squirm worm for sure...I guess he's stronger than he looks because he's moving around all over the place. I was allowed to put my hands into his incubator and gently rest them on his legs and head. I barely grazed him...I was just too scared to hurt him. I did touch his hand to see if he would grab on (he grabbed daddy's finger before leaving Napa), but I had no such luck today. Earlier in the week, we visited the Monterey Bay Aquarium. Ryan and I bought him a big stuffed sea otter, and Gayle and David bought him a smaller one. The whole time I was laying in the hospital, I kept that little otter on me to give it my scent. I carefully and nervously got to put that little otter into his incubator :)

Then we met and spoke to one of the doctors taking care of him. He told us pretty much the same things we already knew. But he did break some bad news to us. This morning, they did another ultrasound on his head to check for bleeds. This was prompted by another drop in stats which forced them to have to give him more blood. They did find two bleeds on his brain. One on the right, and one on the left. They are grades 3 & 4 (the worst kinds). These bleeds can have some very serious effects on his development. Anything from simple speech or motor difficulties to mental retardation. They also did an echocardiogram of his heart before we left because he has a heart murmur. This is a common problem as I understand, but it must be closely watched because it does cause serious problems. We do not yet have the results of the echo yet.

Tomorrow, we are to have a meeting with several people all at once to discuss Lucas's care. This will include the NICU doctor, neurologist, a social worker, cardiologist (I believe) and we will basically sit down and talk about the bleeds on the brain, the heart murmur, other potential problems, plans of action for his care....everything. I'm not looking forward to this meeting because I know it's going to include some very tough and sensitive subject matter. Especially hearing about the bleeds from the neurologist and what outcomes we may be facing. But this is our life for the next few months if God sees fit to keep Lucas in our lives. We've heard so many success stories that raise our hopes and spirits, and then we immediately . Sometimes we just don't know what to think or feel. We remain hopeful, scared, confused, and mostly overwhelmed by the thought of our son laying in a little incubator, surrounded by strangers, fighting for his life every second while we try to continue on with our lives the best way we know how.

I'm not only using this blog to share with you all that happens with Lucas to keep you up to date on his care and progress, but I've found, just by typing this post today, that it really helps me get out my thoughts and emotions...almost a sort of therapy for me.  Again, I am so thankful for my husband. I would be absolutely lost right now without him. He will have to go back to Georgia before too long to take care of work and our home, so I've got to get myself together pretty quick. For now, the plan is for him to stay here with me and Lucas as long as he can. At least two weeks because I will need his help while I'm still recovering from surgery. For now, until Thursday while we're working out other arrangements, we are sharing a hotel room with Ryan's parents, about 30 mins away from the NICU.

Thank you all so much for your kind words and prayers. Please continue to keep us in your thoughts and send up a little prayer anytime it crosses your mind. Big day tomorrow...I'll keep everyone updated the best I can.

Love,
Jessica