Waiting

This morning Addison has another tap. That means our day starts earlier than usual so I can get to the hospital as the doors open at 8 in case they get done with her before or right at 8. I hate the thought of her being done with this painful procedure and being upset and alone. Sure, her nurse will be there, but she has another baby to worry about in addition to Addie. Today especially, she has a new to her nurse, who I'm sure is amazing, but she won't know her. Our little girl already notices when she's with nurses and people she knows and when she's not. So, this morning I have my iced coffee and am waiting at the desk outside of the lounge to be let in. We won't go into the waiting room to wait because, well, it's gross. Not that the hospital doesn't try to clean it.. we've just seen the people who hang out in there.. .

So, like with most things here, we wait. I know once they let me in, I will be greeted by a pale, trembling, disoriented baby with a deep dent in her forehead where all the fluid was before they drained it. I will be brave because she has been braver than I've ever had to be already this morning, so I won't cry or get emotional - that can come later.. or now for that matter.. .but not in there with her. I will cup her feet and her head in my hands, "holding" her as she lays there, and help her feel safe again.

If we're lucky, she will brady and desat frequently but not constantly for the first 3 hours or so, and only spit up occassionally.. if we're not, she'll spit up every few minutes, cry, fall into a semi-sleep, then brady/desat and repeat the process for the rest of the day and into Day 2 or even Day 3. It makes for a long day either way. It's a balancing act; like everything in the NICU, you weigh the consequences of acting vs. the consequences of not acting, or the consequences of Treatment A vs. the consequences of Treatment B. Neither set of consequences is usually "good" but one will hopefully get us closer to going home some day. With this, they balance the risk of infection from too frequent taps vs. the larger amount of fluid to take off which leaves her in a more disoriented/upset state.. we'll take Reduced Risk of Infection for $1,000, Alex. I know.. it's a bad sign when I bring in a Jeopardy reference at 8 a.m. 

They use the same risk / benefit approach when dealing with her reflux. We've asked several times about medicine to help her reflux, hoping to spare her esophagus damage from the frequent spit ups and help her get more uninterrupted rest and gain weight faster. Turns out that the medicine only has a 30% chance at best of helping her and increases her risk of NEC (another nasty infection), which could devastate her intestines.. .again, we'll choose not to treat and pray it resolves itself rather than risk another infection. Thank the good Lord, her reflux does seem to be doing better, and she's been gaining weight! Before the tap today she was 2 lbs. 15 oz... right on the cusp of 3 lbs!!

With these kinds of decisions, no wonder we're exhausted and stressed! Some days we get confused, wondering how we could possibly be so tired, even when we're getting our "full" 5 hours of sleep some nights.. it's just the constant tension. BUT, that being said, she is doing so incredibly well these days!! She IS approaching 3 pounds! She will be 2 months old on Saturday!! She has stayed off the ventilator! She's handling her bolus feeds every 3 hours! She is sleeping more and happier when she's awake! She loves cuddle time! And she's not opposed to trying to nurse! She is simply amazing.. and we couldn't be more proud of her. We go back to the progress and ultimately the beauty that is her sweet spirit to get through our days. You cling to the progress and survive the set backs and trials.

Thank you, Lord, for our sweet angel. Please carry her through another day.

Love ~ Philip & Rachel