#niculife

When we look back at our time in the NICU and/or special care nursery, wouldn’t we have appreciated a helping hand?

I know we are all saying yes; sometimes just knowing that there’s someone else out there who “gets it” and is sending love can move mountains.

I’m asking for support to send a gesture of support, an activity to help pass the time, a memory that is symbolic of all childhoods,….books. The books will be given to the families of Children’s Minnesota hospitals.

I’ve received wonderful support thus far in direct donations and in those who have shopped the book fair. Thank you!

Our ultrasound this week was quick with a simple, "everything looks good! See you in 2 weeks!"

The ultrasound tech was sweet and spent some time trying to get us a good 3D shot. A little difficult as baby had knees in their face as well as some umbilical cord and, I assume, intestines. But, it almost looks like a smile!

Last week we saw one of our midwives who clarified that we officially have a "growth restriction" diagnosis and, while it's a typical result of #Gastroschisis, it stills makes it a third #highriskpregnancy diagnosis (the original being "advanced maternal age" .... I'm old!😝). So.... We should expect more appointments than originally told. Fun, fun.

Juggling appointments in times of COVID (aka no childcare options) is one of the most stressful parts of all this. So grateful my husband's job is being flexible in letting him work off-hours if possible, but it's not always possible for me to get the first or last appointment of the day and I assume as appointments increase, that will continue to be difficult.

He's trying to save as much time as possible for #NICUlife so it's a huge blessing that at least he's able to work from home which gives him more time with us. While the average #gastrobaby spends 6-8 weeks in NICU, it can be anywhere from 4 weeks to a year and 40% of cases return within the first year with complications. So very difficult for us to plan for everything, and right now we feel it most in using his PTO!

These two are my world. Kelenna is such an amazing fighter and a true miracle. Frank has been an amazing partner through this extremely emotional rollercoaster of grieving and celebrating. It’s not over for us but I love moments like these when, for just a few minutes, it’s just us, no nurse, no beeping machines, just listening to her make her cute noises while we sing her to sleep💜 

Finished bath time, all tucked in and getting her feeds while daddy sings her  "Solidarity Forever" ✊🏾