Today did not turn out to be the day we thought it would be. When we got to the hospital we found out Olivia had an eye exam. They found a very early stages of ROP. ROP stands for Retinopathy of Prematurity. It is an eye condition that can develop in premature babies (born before 37 weeks of gestation) or babies with low birth weight.  ROP occurs when the blood vessels in the retina, the light-sensitive layer at the back of the eye, do not develop properly. This can lead to abnormal blood vessel growth, which can damage the retina and cause vision problems. They are going to keep an eye on it, so she will start having eye exams on a weekly basis. This does not automatically mean that she will need medication or surgery but they will be watching it closely.

The next, update is they decided to move Olivia back to bubbles of 8. She has been needing more oxygen support. The doctor ordered an X-ray and it seems like her lungs are not as open as they would like them to be, so back to 8 we go. The doctor explained that this is not necessarily a step back. It’s just that we want her lungs to get the expansion they need so in theory if we can get her lungs to stay expanded then weaning the pressure could go faster eventually. So that’s where we’re at.

Some days it is really hard to stay positive. We have been in the NICU for 90 days now. Olivia is strong and such a fighter, but it is so hard to see her everyday, so little, struggling to breathe. If she is upset, we can’t just pick her up and try to soothe her.

As we get closer to Christmas I think about how her first Christmas she will be hooked up to machines instead of getting snuggles and making special memories with us. It’s also another level of hard splitting our time. We do that every other day, but for the holidays it feels extra hard. It sucks to think about us not being with her the whole day. We want to spend time with our families, but I know, at least for me, I will be thinking of our little Liv. I know that she will not be alone, but it still feels that way. The first Christmas is one that many parents look back on with joy, but honestly for me, I feel like I will want to forget it.

We know it is all on Olivia’s time and how her body grows and adjusts, but it is emotionally exhausting. Most days we suck it up and are strong for her, but it’s hard to be that everyday. It can sometimes feel isolating. We have so many people who support us, but not many people know what we are experiencing. And that is no one’s fault either. We don’t expect anyone to try to. But it’s one of those situations where you can be in a crowded room and still feel so alone.

OK, I think I have hit my vulnerability quota. Sorry to be such a downer during the magical time of the year. I’ll leave you with a few photos of Olivia that I look at when I want to smile.

Lil’ Liv’s Numbers:

• Age: 90 days
• Gestation: 38 weeks + 3 days
• Weight: 5lbs and 13.8oz

Until next time…