Today was a big day, HUGE. 4 big milestones. Today was my due date, 40 weeks. All week I kept thinking about Alyssa being 100 days old on Thursday and being full term, but it wasn't until this morning that I really thought about it and realized that today, or closer to today I should have delivered twins, and yet here I am with only one baby. 1 baby who has fought really hard to get where she is today, and continues to struggle with her feeding. This is the life I was given, and I am still struggling to make some sense of it.
I remember months ago, when we had friends in transitional care who were struggling with feeding issues and appearing very frustrated...and I honestly wasn't feeling sorry for them. Here I was, still in the NICU with my babies who were on ventilators and oscillators and nitric oxide, and we were worried about whether or not they would make it through the day still alive. But now I am where they once were, and I realize that life is not a walk in the park once in transitional care, and now I feel bad that I couldn't empathize with them, because I want someone to empathize with me. Thank goodness for Gerry and Jessica and Joan, my NICU buddies who will forever be my good friends. After weeks of Alyssa latching on perfectly, but having difficulty with the suck/swallow/breathing...she has now forgotten how to latch, but ironically she can now coordinate the suck/swallow/breathing. I am so frustrated with spending over an hour per feed trying to get something that seemed so simple with Emily to happen. My other feeding frustration is that she will not take a bottle from me. She will take a bottle from Keith, from Courtney, and from Paula, however not from me. Meanwhile the neonatologist on for the next couple weeks, I can feel breathing down my neck as he wants to push us out the door. We are just not ready yet.
The title in this blog says "happy"...so onto the next milestones. Alyssa reached the 7 lb mark today on her 100th day in the NICU. Way to go Alyssa!!! Probably because she is getting most of her feeds by gavage and not having to work for her feed. Ok, enough of my frustrations for one day. Oh, by the way...I ate another cookie today.
And finally, probably the scariest milestone is that her oxygen monitor was discharged this morning. Her caffeine was discharged yesturday, and she had no apneas in 12 hours, so the monitor is gone. SCARY. She does still have her heart rate monitor if she stops breathing, but still, I rely on those numbers!! It was a much quieter day though, with less beeping going on, and trying to pay more attention to my baby rather then all the numbers. So that was our exciting day, 100 days, 40 weeks, 7 lbs, and no oxygen monitor. I feel like this should be a turning point...hopefully tomorrow feeding will go well.
1 comment:
Congratulations Alyssa on reaching 100 days! And on losing the monitors. I remember when they took away my daughter's oxygen monitor....very scary but exciting too as it means they are one step closer to coming home.
Alison (TTTS mum in Australia)
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