It has been two months since I have updated everyone! Time is flying by and so much has happened. Lots of ups and downs, which is to be expected but certainly does not make them any easier.

First update…eating. This struggle has continued. The eating struggles are so common for preemies, but let me tell you…IT…IS…EXHAUSTING. I know at each age there will be different challenges but I am so ready for this one to be behind us and at this point there is only a glimmer of it being in sight.

In July, we had a three week stint where Olivia did not gain any weight. She is in the 3rd percentile and she was consistently not hitting her minimum ounces that we were given for hydration. She was still battling the bottle and this Mama was literally losing her sanity. To give you context of how this impacts my mental health, I am in therapy and we are walking through the trauma of the time in the hospital, but instead, for one session, I spent the entire hour crying and talking about every worst case scenario my mind goes through when Olivia does not eat well. Honestly, thank God for therapy because if I didn’t have that my headspace would be in an even worse spot.

Back to Liv. When she was consistently not eating well I made an appt to go see the pediatrician. Ours was not in the office that day so we saw one of his colleagues. She was kind and could see my anxiety. I asked about when we need to start to panic (even though I was already there) and consider a G Tube. She said that we were not there yet. But that she could put a referral in for the pediatric surgeon for just a consult, so we could get information about it, just to have, and then if we ever decided to go that route we would have that information. After that appt, we figured out a work around with Olivia and her eating. We feed her when she sleeps. We try to get her to fall asleep every 3ish hours and she will typically take down 3-4oz, sometimes more, sometimes less. But we were consistently starting to hit the minimum and sometimes more. So I put off making the appointment with the pediatric surgeon. Until we had a few days in a row again of not eating well, and one of them being only 10oz in one day. Anyone who has had a baby knows, that is insanely low. So, I made the appointment and we saw the surgeon last week. She was amazing and explained everything so that we could both understand the positives and negatives. And she made it clear that she was not in the business of selling G Tubes. And that this is not a requirement, but it can be an answer for some families. Just some insight into where my mind is at, not that I owe anyone an explanation of what we choose to do for Olivia’s well being, but a G Tube is a last resort. And I’ll speak for me and not Jer here. Yes, it would probably help my anxiety on the days where Liv does not eat well, because I can guarantee she is getting enough nourishment, but I do not want to put her under for another surgery unless we had really exhausted all of our options. Which leads me to the next update that is part feeding, part oxygen.

This last week we also had our follow up with Outpatient Pulmonology. This is the 2 hour appointment we have every 4-8 weeks, depending on how things are going, where we meet with a social worker, a respiratory therapist, a nurse practitioner who works with our pulmonologist, and a dietician. At this appt I was expecting them to order another night test for Liv, so we can move on from our oxygen journey, but that is not what happened. Because Olivia is not gaining weight, one thing that often happens with preemies who have lung issues is they get taken off oxygen too early. So, with Olivia, there is a chance that overnight, her stats are not as high (the machine only beeps if she goes under 90, but ideally she should be 95 and higher). But we are sleeping so we don’t always see the numbers. So, if she is on the lower end, that means that she is working harder to get the oxygen, which is then having her burn more calories at a time where she is not taking in as much. So, the thought is, to put her back on oxygen at night to see if that is indeed in the case. And here we are back on the roller coaster of the NICU, outside of the NICU. Does it suck that she is back on oxygen at night? Yes, yes it does. She hates it when we put it on. She coughs. She has woken up in the middle of the night from it, when she typically doesn’t wake up. I hate taking those stickers on and off her face. I hate seeing how the stickers irritate her skin. I hate that we are doing family pictures next week and then her 1 year photos in a couple of weeks and those stickers will be on her face (Yes, I know the photographers can probably photoshop them out, but I still have my feelings). I hate that as a mom I start to guilt myself for thinking that she was fine and not paying closer attention. But, with all that being said, it has only been four days and we have seen a difference in her eating. She still won’t take a bottle when she is awake (I feel like that ship has sailed for us, lol. Hoping she picks up on the sippy cup soon). But her intake per bottle has gone up. On Saturday she drank a whopping 26.7oz. A record for her! At the appointment, it was also decided that we will up her calories on the formula to 26cal. We have been doing it slowly to make sure she doesn’t have any poop issues, but so far so good. Liv is almost 8 months adjusted, so we are doing solids also. But at this age, she can’t get all her nutrition from that. But when we are doing them we are trying to add more calories. So in purees, adding a scoop of formula. Adding butter to veggies. Giving more good fats like avocado, hummus, yogurt, and cottage cheese. So, hoping this all pays off and our little Liv puts on some LBs.

Since the last post, we had our appt with High Risk and that went well. They said Olivia is doing so well with milestones, so that was a nice appointment to come out of. We finally got an appointment with an Opthamologist. That has been a struggle, too much to include here, but we couldn’t get an appointment until December, so that’s fun. We finally had our first appointment downtown with our new speech therapist. She is great, which makes having to travel to Sac for another appointment more bearable, lol. Olivia is still seeing physical therapy and child development. We love them, and Liv is doing so well with her milestones. She amazes us every day. And Jer and I cry whenever she hits a new one. That’s normal, right?

It is really crazy to think the Olivia turns one next month! It has been a whirlwind of a year! She will always be considered our miracle baby and I can’t wait to see the woman she becomes. But for now I’ll be happy just being her mom.

Here are some of Liv’s latest milestones:

Here are some photos from the last couple of months:

Some updates on Jeremy and me:

Jeremy is really loving is new job. His company is very large, but it just so happens that two childhood friends work there, which has been really nice to have some familiar faces. He has lost over 50 pounds and his overall health has really improved. We got a blackstone and he is enjoying making meals for the family. He is also trying to volunteer, but at an assisted living facility. If you know Jer, he loves to play games and really enjoys spending time with the older generations, and the facility is walking distance from our home, which is super convenient.

I went back to work in July. The transition has definitely had it’s challenges. I’m sure many working mom’s can vouch for the feelings of guilt, which when you have a child with medical needs, I feel like those emotions can be multiplied. Work has been good. I feel like I got back into the swing of things pretty quickly and I love my team, so it is nice to be back. But I do miss spending every day, all day, with my girl. I have completed all the steps for volunteering in the NICU and my first day to volunteer will be Sept 7. I am so excited!

My sister had my niece in June, so that has been an exciting addition. Little illaria is precious, has the sweetest smile, and has a good set of lungs that definitely give Liv a run for her money, haha.

Alright, I think that’s it!

Lil’ Liv’s Numbers:

• Age: 11 months + 5 days
• Adjusted Age: 7 months + 25 days
• Weight: 13lbs and 14oz (3rd percentile)
• Height: 26 inches (17th percentile)
• Head: 42 cm (19th percentile)

Until next time…