Skip to main content

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.






Comments

Post a Comment

Popular posts from this blog

Day 5: Tiffany’s perspective and Sloane Updates

Sloane Day 5. Coming from Tiff:  We apologize for taking our time with updates. Now that things are settling a bit at home and in the hospital with Sloane, hopefully we will find a somewhat normal routine.  I got released last night from the maternal fetal wing of the hospital. One thing we are noticing and really liking about Colorado Children’s hospital is that everyone seems to be extremely loving and accommodating, and we were able to really move at our own pace for my discharge. We really appreciate this as everything has been such a whirlwind for us. It’s still mind blowing that it’s been less than two weeks since we learned that we would need to even be working with Children’s at all. Last night was very odd. I feel like it goes against everything in nature to have a baby, and then leave your baby in the NICU to go home. We both were glad to be back in our own bed but it also was really disconcerting. They did do a room change for Sloane after I got discharged, and now ...
3 comments
Read more

July - Sleep Deprivation and Big Decisions

We have been busy over here at Casa Pelota (House of Ball). In June, we bounced back to the hospital for a week, due to a nutrition error (that I've since moved past but really was too angry to blog about at the time). We have mostly been working on finding our way, and learning how to be normal. Normal is so relative, isn't it? In the last three years, our family has undergone a lot of change, and learning to be, "normal" has become our default when emergency mode begins to wear off. We are there again now, learning our new normal. Not going to lie, finding a new normal is exhausting, and getting to that point usually involves lots of tears on my end, some yelling (also usually on my end, Eric is a pretty quiet guy when he's working through things) and lots of productive family conversations. Right now, our biggest barrier is sleep deprivation. Never in my life have I gotten so little sleep. We are averaging a little less than 4 hours a night. You don't r...
Post a Comment
Read more

Using my words.

With of everything that's been going on, Aiden has been meeting with a Child Life Specialist at the hospital. This is a nice, fluffy way of saying Child Psychologist. She has been amazing, and I am very grateful that Children's Hospital has help for us in this way. The last two days, I have had the opportunity to go to the hospital without Aiden, and on Monday, I ran into his specialist and we had a good chat. She told me that Aiden was going to be okay and that most of his behavior is completely normal for any kid who is almost four and now has to learn to deal with shared parental attention with a sibling. She told me kids were adabtable and that nothing I was going to do was going to screw him up for life. She told me the way he's doing play therapy shoed he knew he was very loved, but also showed that he missed attention. We talked for a bit longer and I asked what to do when things get out of hand and he has a meltdown due to seeking negative attention, because...
1 comment
Read more