The girls are both holding their own and fighting on, despite the arduous battle they undoubtedly still face. Avery had an overall very stable day and her oxygen requirements went down. She was resting comfortably throughout the day. She clearly loves her Daddy’s touch above all others, as he is the only one who can touch her without her having an agitated reaction. I think she must remember all of those funny stories he told her and her sister while we affectionately still called them “wombmates.” He used to be able to calm them both down while I was still pregnant simply by delicately touching my belly and telling them stories. I can hardly wait to see how much they will thrive and grow when Daddy gets to hold them and feed them in the NICU.
Sienna had a rougher day, primarily because she has not been peeing and she still needs to form gases in her belly. Her little body is very badly bloated with fluids because they’re pumping her full of liquids faster than her kidneys are eliminating them. Although she had strong kidney function immediately after surgery, it has stalled and she hasn’t had a good output for the last two days. She’s on several medicines to try to help her, but it’s very important that her kidneys start to function. We have been praying for pee for two days….and continue to do so. As a way to deal with the pain of seeing her all puffy, we’ve joked today that we will forever laugh and cheer when she pees on us in the future. Diaper changes will not seem so much of a chore, but rather a gift. We told her that someday she’ll probably be embarrassed to know that her scared Mom and Dad boldly told the world to ‘pray for pee.’ It’s humbling to be forced into acknowledging and appreciating the miraculous body functions that we all too often take for granted.
We met a wonderful couple tonight as we departed , Michael and Jennifer, who also have twin baby girls in the NICU, Sauren and Malina. Their girls were born at 1lb 9oz at 26 weeks. They are now full term! They kindly shared several details of their own long journey, and the encouraging news that their girls are now looking forward to going home hopefully within a few weeks. Their stories echoed several of the diagnoses and scary news we’ve already received and it was comforting to speak with loving parents who so intimately understand our situation, concerns, emotions, and pain, who are now feeling a bit of relief and excitement for their near-term homecoming. We look forward to cheering their girls through to their glorious graduation from the NICU and to sharing play dates with all four silly, smiling, and healthy girls in the coming years. They gave us the wise advice to take good care of ourselves and to find at least one thing each day that we do “just for us.” They have learned through research that this experience can have effects on parents similar to the symptoms veterans experience in PTSD. Yet another reason to appreciate our strong marriage and the abundance of love and support from our friends and family. We are committed to taking care of each other and to reminding each other to nurture ourselves first. This is not easy to do when your heart is split between two isolets (what they call their little protective beds) one city away, but we know it’s essential. Loved ones, please continue to remind us of this.
As our innocent, beautiful babies soldier on and have lots and lots of new “wombmates” that they have to adapt to living with, please continue to pray for them and please “pray for pee…”