Cares - Day 12

Ellie holding dad's hand

Rex after cares

Grandma changing Rex's diaper for the first time 

Grandma comforting Rex

Today has been a better day. The doctors seem happy when they tell us that we will just be "chasing" the kids throughout the day. From what I understand that just basically means we will watch their vitals and their blood gasses to see what they need more of/less of and hope they don't have any episodes with their heart rates or oxygenation throughout the day.

A day like today is exactly what we needed and I thought it would be good to write a post about how Charlie and I get to help in caring for our babies every day. The NICU is not where I ever saw my first days, weeks, or months as a mom and honestly it is hard for me to not be able to mother my children in the way I always imagined. When we were leaving tonight I got to help with Rex's cares and Charlie did cares for Eleanor.

First we take their temperature. It kind of baffles me that the thermometer is nothing special and looks like it costs five bucks. Their bed is set at certain temperature and there is a probe placed on their back to monitor their temperature. Their skin is so thin and fragile that they can't regulate their own temperatures.

Ellie's temperature

After we take their temperature we change their diapers. This is so fun for me because it feels like something you would normally do for a full term baby. The nurses were so sweet in teaching us how to do this around all their lines, especially around their umbilical lines that are so sensitive and not to be bumped. They usually only pee but two days ago they both actually pooped for the first time! Their diapers are micro premie size but we still have to roll down the front of the diaper so it doesn't go all the way to their armpits. Every time we change their diapers the nurse will go weigh the diaper to track their urine output. This has been especially important for Eleanor today as we have started a new medication to close the PDA in her heart, and one of the side effects of this medication affects kidney function. She has been doing fine on her kidney function and urine output for today so that is something we are celebrating!

Ellie's diaper change

Ellie's diaper change

Then we take breast milk on a long Q-tip and dab it on their lips and tongue. They call it oral care and it helps to keep their lips moist, kind of like chap stick. Sometimes when they are awake enough they will even suck on the Q-tip. I think they really like oral care and it makes me feel like I can do something for them by pumping breast milk.

Ellie's oral care

Ellie's oral care

Ellie's oral care 

Next we change their oximeter. This reads their oxygen levels and is mostly what the nurses have been chasing (adjusting their oxygen saturations and oscillator settings) to keep their vitals in an acceptable range. The oximeter literally lights up their whole foot because they are so small.

Ellie's oximeter

Ellie's oximeter

Just last night we got to start putting Aquaphor ointment on their skin. It will help keep their skin moist and hopefully help heal their fragile skin. I loved doing this today. It is like giving our babies a little bath/massage/lotion rub. We have to be very careful when doing this because they are so sensitive and really don't like to be rubbed. But this is just another thing that really helps it feel like I am taking care of our babies in a normal way.

Rexy's Aquaphor "bath"

Mom and Rex

Throughout all of their cares it is important to watch their vital signs to make sure they are able to tolerate the cares. Rex has been doing amazing with tolerating since last night. Ellie has had a harder time tolerating cares, and because of this we have not been able to do much with her over the last few days.

I told Charlie one of the things that is hard for me right now is getting more and more attached to our babies every day. I love caring for them and singing to them and just sitting in their NICU room. Every day that passes I feel like I can be more sure of their survival, but the doctors are quick to remind us that that is not necessarily true. I have had so many people reach out to me who have had babies around the same gestational age as ours and some lose them and some don't. I trust in God's plan for them. I feel like God needs me to be someone who has enough love for these two babies to handle whatever is best for them. I hope that I can have enough love to let them live the lives they were meant to live.