HITTING THE WALL

Since I posted last, Gabriella has made it over 3lb, is taking 27ml of breastmilk per tube feeding, has been taken fully off of vent settings and is on nasal cannula c-pap only. The doctor this week has been explaining that little to no change is a good sign at this point and I should be proud of the breastmilk because that is what is helping her do so well. I am still amazed by her tiny body having incredible strength and endurance. It is truly a testimony of the miracle of life as well as one of resilience.

I always wonder how much to share. I don’t like to talk much (when I do, I forget how to talk or remember what I want to say after it’s too late) so when I write, everything I’m thinking comes out and I am lengthy. I know this is my private life, but I also like the idea that it is documented. That other mommas know they are not alone and I hope that Gabriella gets to read someday about how much we care.

We have been continuing the every other day shuffle and I think it has been better on all of us to shorten the time away from each other. We like it, minus the increase in travel time and that we will have to adjust it day by day according to Aarons fire schedule starting Sunday. For me, coming home brings so much guilt. Once I’m there, I don’t want to leave because it feels so good to have some normalcy.

I took Hannah to preschool this morning and It feels like such a rush instead of a joy. I should feel happy that I get to be the one to take her. She senses my stress and me hurrying her. She gets worked up too, not wanting me to do her hair and struggling to get her boots on. I feel the same way at bedtime when I’m trying to make sure she gets to sleep on time. I notice her looking at me with big eyes, wishing I don’t have to leave her yet again. I notice her struggling to find a way to let her anger and frustration out. She gets nervous asking where she has to go that week. She is getting physical if she can’t come up with words to ask for help. My FB group is giving me some ideas for siblings of NICU babys and we have plans to see what the child life specialist at the hospital knows. It breaks my heart she has to go through all of this. I am trying really hard to give her full 1 on 1 when I can.

They switched Gabriella to a different room and it was on the unit on the other side of the 7th floor. I was led to believe it is all because of her improvements. The RN explained that although she is stable enough to be on this unit, it was really because they have new critical babies that need a bed. I made it to Akron by myself for the first time and was worried all of my bathroom stuff had not been transferred to the new room. Fortunately, I found it all in the bathroom cabinet. I was able to settle and had some skin to skin time. It is feeling more comfortable and less like a unfamiliar little life that I have not bonded with yet. There is still a lot improvements to make, but to touch the hair on the top of her head and watch her expressions are starting to make her feel like she’s mine. I barely remember what day it is and see that the board in her new room with her information is blank. I hope she gained weight last night. I look to the left and see that they raised her feed to 27ml and am glad for that. Thankfully my breastmilk has been steady and not decreasing. I look to the right and watch the O2 monitor bounce from high 70’s to high 90’s. Every time it goes down, I can’t help but stare at it till it climbs back up to around 92. My stomach drops when it dips down too low and I watch her little back not moving. There are these little periods of apnea and I touch her back to talk her into breathing again. Every time that happens, the 10 seconds always feels like 10 minutes. After about 4 hours of this, I usually need a break and need to walk back to Ronald McDonald house for a bit. I feel sad that I can’t be like the other moms who will spend the whole day or even all night in the room with their babies. It gets overwhelming very fast and I am hoping I can learn some ways to raise my threshold.

I was just telling a friend that I am having trouble remembering all of the important things to do. Part of that is not isolating myself, because I tend to forget to reach out to my friends just to talk. We are doing our best to add that into the equation. We plan to send Hannah to some of her friends instead of parents sometimes, Aaron got to go hunting, and we plan to go to the Fireman’s Ball this weekend. All the self care things, business things and phone call things seem to get looked over unless we pick like 2-3 items for the day and tackle them. I am so thankful for Aaron’s attentiveness and memory right now. Also for his planning of our schedule weekly and helping me with so many little things without asking. This has been draining on him too, but he continues to be an anchor for our family. I am extremely blessed with so many friends and family members who care and God continues to make things fall into place. This marathon has lots of obstacles, and it is terrifying, but as we are stretched to our limits, there is a reminder when we least expect it, that we are not alone.

Some of my favorite family time when I get to go home is when Aaron makes a fire in the backyard:

Me practicing curling my hair since it had been so long:

This was the day I noticed her foot looked bigger:

Hannah has had a snotty nose and cough since the first week Gabriella was born. We are hoping some of it is allergies and trying out those meds first: