Our life this week.

Sloane is doing excellent. She hit 40 weeks gestationally on Friday the 13th, and we are very pleased with her progress. We have finally gotten to a good growth pattern and she has finally gained a little more weight than her birth weight! These are really good things. She is tolerating good feed times with her G tube; having good STATs, and finally at a place that makes us more comfortable. Part of this is Eric and I moving forward with our education and understanding: part of it is also that Sloane is growing and stabilizing, and we are becoming familiar with her needs.

We have hit a few little bumps in the road as far as where we belong at Children's Colorado. We are learning that Sloane is a unique case; she is a preemie on a trach collar, that does not need a ventilator. We are learning this is uncommon and often the hospital administration doesn’t have protocol for our situation. Usually preemies have lung issues (I was pumped full of steroids before delivery and Sloane’s lungs and weight were great as a result at birth). Also, babies that have a trach usually have it for some kind of pressure issue. These things do not apply to our particular situation - Sloane needs a trach only for her airway. As a result, we have encountered some confusion as to where we belong and also how we will get home. Tracheostomy care, man.

Children’s Colorado requires a lot of education to go home with a child with complex medical needs. Usually, the 9th floor is where education is received so that the hospital can facilitate a way to teach and ensure that the child is going home to a safe environment with qualified caregivers. While this is brilliant and I respect the plan, it also comes with some frustrations: We began our week on the 9th floor, and attempted to be very proactive in our education. Eric and I are both pushy people and we have been working hard to get things to a good place with our own comfort levels surrounding Sloane's care. We are also about to begin week 4 in the hospital and we are legit over living here practically ad having our family be split into fragments. We want to go home. After four days on 9, it became pretty apparent that Sloane needed something different than the team there was able to provide. We learned having a preemie up on 9 is not common and that some members of the staff were not sure they were comfortable with a baby that hadn’t reached its 40 week mark yet. After a few frustrating days of a lot of conversations that scared me- Sloane got an EEG because they thought she was bearing down too much during diaper changes and possibly having seizures (EEG ruled that out), Sloane may need to go on a vent (she hasn't needed one since her first few days after birth- and only because she was deeply sedated from surgery) Sloane has brain immaturity form a gestational age perspective... blah blah blah...We were sent back down the NICU as a result on Thursday night. Where everyone thought she was doing great, no vent needed... EEG unnecessary... and people confused as to WHY any of these conversations had taken place because Sloane is behaving like a normal preemie. And I was fairly frustrated- WHY IS THERE SO MUCH CONFUSION. We are feeling good about staying here on the NICU floor, but also desperately WANT TO GO HOME. I really tried to drive this point home with the NICU team Friday,  and over the weekend- so here's hoping that my message has been crystal clear. I had no idea it would ever be so complex to bring home a baby that came from my own body. AHHHHHHHHH

Eric and I are working hard on putting pressure on our nursing agency to get us interviewing with night nurses (we can't go home and be discharged without having our 'baseline' fulfilled of nurses to cover 7 nights in our home). We are working on a lot of other things as well, but this is a big priority for me. I think it's a bit of overkill but I also think it will be helpful for our family (pending the nurses are good- I don't think someone not detail-oriented is going to last very long over here).

We are continuing just trying to have a semblance of normalcy in our home. Aiden is doing vey well all things considered, and I am very proud of him. This whole situation is really difficult but we are trying to make the best of it. I feel very strange being a mother to two children that are currently in two different locations. Often, I feel like I am failing both of them but I am absolutely stretched to my limit in attempting to help Aiden and learn Sloane's needs. Welcome to the world of having a medically complex child. Eric is struggling to meet all the needs he is having thrown on hime as well- he's entering extreme busy season for his occupation, and he wants to be present for our two children as well. He's spent many nights at the hospital now to get to know Sloane, even after working a 15-hour day (really- less than he should be working), and it just makes me fall in love with him all over again to watch him pushing and advocating for her when and where he can.

On a separate note;  I am very grateful for the MANY MANY people that are making our life easier as we struggle through every day. My mom has helped so much filling in the gaps- cleaning, starting dinner- remembering my laundry- loving Aiden; Aiden has had so many playdates with wonderful families- and long playdates that I can't even begin to describe how much I appreciate. We have had food coming in droves for our freezer, gift cards, and beautiful baby gifts delivered. I have had so many beautiful notes, emails, messages written to me, and each one warms my heart in new ways. I have been working on Thank You cards for days and I am not even close to scratching the surface. I am not good at asking for help and its been a beautiful experience for me - this whole thing has opened my eyes as to what I can better do when others need service because of their trials and afflictions in the future. Without our friends and family, I would be crushed under the weight of this hardship. I am not kidding. Your love for us has kept us whole, and sane. My heart is full.