Oh my goodness where does the time go?! Today July 2nd was Lilliann’s original due date! & Now she’s 2 months old and 37 weeks gestation! How crazy?!
She will be getting her 2 month vaccines here shortly while in the NICU so she can be monitored for any after effects like apnea & breathing, etc.
Lilli’s eye exams are still going well with no retina issues just prematurity, which is expected. She doesn’t need them weekly any more and will get them bi-weekly. She is over 4 pounds 8 ounces and still climbing closer to 5 lbs every day! One doctor said in a few days we may even remove her NG tube since she’s been feeding so well orally, makes me kind of nervous. Hopefully we will be going home with our little peanut in a few weeks at most! We just have to perfect the feeding and not have any Brady/apnea episodes for a solid week.
We have survived our NICU stay for over 60 days and still counting! My oh my are we exhausted though! My new work routine and hospital visits still are keeping us busy! This last week was insanely busy! Not only did I go back to work and had to work a shift on Garry’s birthday yesterday, all while juggling everything else, we got our kitten PJ fixed! So caring for him and dealing with everything else has been crazy! So thank you for the prayers just keep them coming! We definitely need them!
(Sweet praying hands) 🙏😍
If people knew the struggles and internal battles people face and fight on a daily basis they wouldn’t treat each other so poorly, everyone needs to try harder on making the World a better place for all! Everyone we speak to about our current situation says how we are doing this all so well and gracefully. We can’t be nervous wrecks, it would only make it worse. We have to stay strong even though somedays we do truly feel defeated and like we’ve failed some how! It’s such a crazy learning experience. This journey will truly make or break some couples. It has really only made Garry and I stronger, individually and together as a whole. We have our moments (we aren’t perfect) but at least they are minor and we keep reminding ourselves it’s only temporary and will be over soon and we will look back and think how amazingly fast it all went by!
Lilli still has episodes of Apnea/Brady’s while getting bottle fed occasionally, she’s still getting the hang of it all. I read an interesting fact today…Until they’re 6-7 months old, babies can breathe and swallow at the same time. Adults aren’t even capable of that. It takes a lot of coordination if you think about it, breathing, sucking and swallowing all in one and she is doing it when she shouldn’t even be born yet! Preemies are simply amazing!
We love most of the nurses and have only had to ask to not have 2 be repeat nurses out of the 90 that work in the NICU, that’s not too bad. If you don’t mesh with certain ones it’s best to speak up since they are caring for our child for now & we only want the very best for her. It is hard co-caring for Lilli at times when you have different ideas and advice from all of the nurses and 4-5 different neonatologists that see her.
(This is in all rooms and boy is it true!)
One of our friends mentioned how we basically get whiplash from being told one thing and have it changed when the next shift starts. We’re always adjusting. You have to constantly let everyone know your wants and needs, it really trains you communication if you lacked with it before. There used to be a window the nurses would write on for Lilli’s care needs, info, requests and the head of NICU made them quit doing it so there has been a lack of knowledge based on her care without it. We enjoyed seeing her progress with it so it’s sad they took it away. Some nurses don’t listen to us or care what we have to say it seems like at times. Some also take more charge than others, with things we can normally do ourselves and others give us independence and privacy to parent on our own. So it really is a day by day process, one day you get it right other days you want to scream and run away with your child. It tests your patience, big time! No one wants to be told when/what you can and can’t do with your baby or when you’re right or wrong really. We’re learning though and do appreciate most of the help and advice we receive. My Mom works for peacehealth so she wrote head of women’s care at the hospital and just gave some ideas and insight on NICU parents lives and how they could really make it easier during our long term stay! Little Lilli is blossoming into a very strong flower! If one thing in our life finally had to go right we’re glad it’s her! 💞