I was wondering if I would have more time for visitors when he went back to work, but truly, this place is a slightly well organized circus. There isn't much down time at all, and when there is... It means I forgot to do something. So I would love to see everyone, and I would love to introduce you to Annelise, but there is not a moment in the day where I don't expect somebody to come in and train us or check in or chaperone while we practice caring for her ourselves. I'm so grateful for the attention they give to Annelise, and would not want any of them to come less frequently... It's just so much in a small span of time. I don't think it could be better, it's just how the days are right now. We are so far still looking at this Thursday as a go home date.
Today marks 16 weeks out of the womb for our fierce little lovie! I just rocked her and sat with her and cried all over us today. I'm so thankful for every minute with her. We had a great experience with our high risk prenatal care team here. They are just across the parking lot from the hospital, so I've been wanting to go pass around some photos and show them who Annelise is. They asked me to let them know when we got back from Omaha. I look at the photos and think of all the well-meaning people there who checked and double checked to make sure we didn't want to abort her because of her extra chromosome, and because our life would be certain to be hard, like it really has been, and still is now. I have to remind myself that they thought they were helping... But they couldn't foresee the beauty that we would miss out on if we had chosen to avoid this hard season. One million percent worth it to be Annelise's mommy and daddy. We know and have a relationship to God that is so much deeper and wider because of Annelise. We understand our place in this world better because of the perspective shift that is continuing as days go on because of Annelise. We see our friends and family going above and beyond, supporting our family with such hospitality, love, encouragement, all because of Annelise. She is treasured so completely. I'm excited to show her off to the office that only saw her in the womb, and only knows that we left the office to go to Omaha with a 50/50 chance to deliver her alive. I hope they remember to tell other moms with a prenatal Trisomy 18 diagnosis about her valuable life.
So this day was sad because we didn't have our Kevin/Dad... But it is so good because it's another day that we're doing life as a family of 3!
Our palliative care nurse practitioner came to help Annelise and I get out into the sunshine for a few minutes today! I know her job is hard, but I'm so grateful she does it. Just like our NICU nurses, she gives so much to her profession, and people have better days because of her. We tried out her stroller, went down the elevator, and sat on a bench in the shade. It was a very important visual for me to see our baby in her stroller, outside of a hospital room. This home life is really going to happen! We did ventilator training #1 of 3 this evening, and are using the feeding pump that we will be using at home. Doing our best to lessen what I know will absolutely be a steep learning curve.
We are still waiting to see what the neurosurgeon will say about the MRI results and the bump that appears above her shunt. Rumor has it that he was in the OR today, so qhopefully we can see him tomorrow.
Goodnight everyone!
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