Well, it has been over a week and we are surviving, lol. But let’s take it back to arriving home.

Being at the hospital was so emotional, that once we got to the car, I feel like I became numb again. It didn’t seem real, and it kind of felt like I was just going through the motions. Olivia did great in the car, she just fell asleep. Jeremy went 55 on the interstate and took lots of back roads to get us home.

Upon arriving home, we discovered that the house was decorated with welcome home signs. When we walked into the house we found streamers and photos of Olivia hanging from the ceiling. My sister and brother in law had created such a sweet moment. We actually still have everything up and haven’t taken them down. Olivia loves to look up at all of them as we move throughout the house.

It has taken us some time to adjust to our new norm. It is one thing to have a new baby at home and being responsible for them, but adding the anxieties of having a baby that has lived in the NICU for over five months is another level. There are no nurses to let you know why the alarm on the pulse oximeter is going off or what to do when Liv is less than thrilled to drink a bottle that has her medications in it. We now have to trust that what we have learned is good enough. The thought of that can be daunting. It is also an adjustment to go from having a doctor check on the progress of your baby every day to only having appointments once a month. I know this is how “normal” families do things, but it is foreign to us.

With Liv being home we have learned all about oxygen concentrators, oxygen tanks, reading a new pulse oximeter, how to do nebulizer treatments, and measuring out four medications that Olivia needs to take twice a day. I feel like our biggest challenge has been the medications and figuring out the amount of formula that will help with the taste but also not be too much because we need to make sure that she finishes the whole bottle. It has definitely been experimental and we have learned the hard way when she has upchucked it all over us. Jeremy and I have survived with only one set of sheets for our sleep number bed for the last 2.5 years, but last night we slept on our mattress without sheets because of the massive amount of spit up. So, we broke down today and got a second set of sheets (not a cheap investment).

I think one thing that has been hard for us is thinking that being out of the hospital, we would have this new found freedom. But, we have gone from being stuck in the NICU to being stuck at home. We would rather be at home, but having to do a math problem to make sure that we have enough oxygen in the tank from going to the doctor and taking a short walk is slightly cumbersome. It’s hard because there are so many things we would like to do, but we are still in a holding pattern. And that is difficult. It is hard being patient. We want to make sure Olivia is protected and safe, but at the same time would love to not have to weigh out the risks of going to eat at one of our favorite restaurants. I just keep reminding myself that this is just a moment in time for us and it will not always be like this, just like our time in the NICU.

I am not meaning to sound like a downer with all of this. We are definitely happy to have Livy home with us and wouldn’t want it any other way. And when it comes down to it, she is doing great and we are so proud of her progress. February feels like a blur because her progress went into hyperspeed. We are looking forward to how she continues to progress and blow us away.

With all that she has going on, we have some follow ups with various specialties. At the end of the month we will see her pulmonologist who will be working with us to wean Olivia on her oxygen. She is currently at 1.5 liters, but we have already started to try and lower her to 1 liter. Yesterday, she did well for six hours. Unfortunately, the oxygen concentrator we have only allows us to go down by half a liter, so at some point that may need to be switched out so we can go down in slower and smaller increments. We will just have to see how it goes. We will also be seeing speech to check on her eating in April. Around June, we will have a follow up with the opthamologist to see how Olivia’s eyes are doing. We are working on seeing what other developmental therapies Olivia may qualify for, like in-home physical therapy. And then of course we will have our pediatrician appointments every couple of months.

I am off work now until May 6, which has been great as I have been able to focus on Olivia and the transition home. But our days have already been flying by! Our day is typically: get up, change Liv’s diaper, feed her, and she has some swing time while I make breakfast for me and Jeremy. Then around 9AM we do her breathing treatment, and feed her again with her meds this time. Then we do another diaper change and either do a bath or put her in her clothes for the day. Around that time, Jeremy usually takes a quick shower and once I am done changing Liv, Jer takes over so I can get ready. Olivia enjoys napping in the morning, so she may have dozed off and then of course there will be another bottle and another diaper change. After lunch time, if she is snoozing, we try and get a few things done around the house. Today I ran errands, while Jer stayed home. More bottles and diaper changes for the afternoon. When she is awake, we are doing tummy time, some of her physical therapy exercises, reading, singing or dancing. Dinner has been taken care of for the most part for the last 10 days. We are so grateful for everyone that signed up for the meal train. It has been so nice to not have to think about that. Olivia is a pretty content baby, but she does have a “witching” time. It starts around 5PM and lasts until about 10PM. For most babies, I have read that it is only a couple of hours, but she likes to stand apart. She isn’t fussy the whole time, but she will have spouts throughout the five hours of being restless and we have to try a million things to get her to calm down, but then each thing only works for a short period of time. Around 9PM we do another breathing treatment and then finish off with the last bottle of meds. She typically falls asleep by 10:30, and then sleeps through most of the night until 7ish. If she does wake up it is only once. So in that respect, we do feel very fortunate.

Alright, I think that is about it for now. You all voted to continue to update you on Liv’s progress, so I will be continuing the blog but it probably won’t be as often because we won’t have many updates in between appointments. But I will of course post photos/videos of Olivia between blog posts.

Also, a special shout out to my mom, Glenda. She has been so much help since we got home. Our house actually looks like our home again and we have her to thank for that. Love you, Mom aka Olivia’s Nonna.

Lil’ Liv’s Numbers:

• Age: 23 weeks + 4 days
• Adjusted Age: 9 weeks + 1 day

Until next time…