Yesterday Miss Avery was having a rough day. She was stable but kept having spells where her blood pressure would drop and her oxygen requirements went up. We spoke with the doctor and he assured us that he wasn’t seeing anything that had him surprised.
Since then, though, she has been doing much better. I was a bit concerned this evening when we walked in and the isolet in her area no longer had the ultraviolet light and there was now a sheet covering it. My first reaction was obviously one of fear, but that was quieted by the faith that if there had been some dramatic event we would have been notified. Then I figured that they must have moved her again. (The day after Sienna passed away we walked in and found that Avery had been moved to the opposite end of the room.) But as I approached the isolet I noticed that it was indeed baby Avery’s. Robin and I both asked the nurse, just to make sure, if everything was okay. She told us that all was fine and that Avery no longer needed the bili-lights.
It has become my routine to look at the monitors as well as the machines that supply the medications. I do this as soon as I approach the isolet and although I really don’t know what many of the numbers or abbreviations, etc. mean, I have learned a little bit about it all. During my inspection this evening I noticed a new syringe so naturally my eyes were pulled in that direction and the letters that were written on it slowly became deciphered by my brain and the word was immediately sent to my mouth. “Feeding?” Avery’s doctor was still close by and upon hearing me say that halted his forward progress, wheeled about and looked at me. “You’ve increased her feeds?” He explained to me that he had made the order earlier in the day and that now instead of getting 1/2 cc every eight hours she is receiving 1/4 cc each hour. For obvious reasons Robin and I were both excited by this news.
We spent the remainder of the visit with Robin talking to Avery who very much seemed to enjoy the story time. Before she dozed off to sleep, our baby girl looked at us with her eyes opened wide and then yawned. Growing is a tough job.
Power Pink: Since the announcement that the bands had arrived we have had a large number of requests for them. We feel honored that so many of you are requesting them and ask that you either wear the band or place in a spot that you will see often so that you’re reminded of the battle that Sienna Grace fought and the one that Avery Rose is still fighting. We also talked at length about asking another favor of those of you who want bands.
Since the day the girls were born, both Robin and I have said that we wish that no one else would ever have to go through this hell. And then after Sienna’s passing we said that we wanted something good to come from the pain that we have been feeling. Many of you may already know that The March of Dimes Foundation (www.marchofdimes.com) is the leading non-profit organization for the health of babies and prevention of premature birth. This organization is instrumental in much of what goes on in not only the NICU where Avery is living, but in hospitals across the country. In our attempts to make something positive of the pain that has been put on us, we are asking that our friends and family members consider making a small donation to March of Dimes. We are suggesting at least $1.60 for each band that you receive. We chose this amount because it represents one dime for each of the sixteen days that Sienna was alive. We will take the total that we receive and donate it to March of Dimes in Sienna’s name. We will not require that we receive any payment, nor will we try to shame anyone who chooses not to donate, and everyone that asks for a band will receive one. We are just trying to do something that will benefit the organization and hopefully help to ease the pressures and pains of other families down the road. If you are mailing a donation via check, you can choose to make it out to one of us or directly to March of Dimes. Any payments of cash will be deposited into our account so that we can write one check for the donation. (I am thinking of enlisting the services of my accountant mother-in-law to assist with the bookkeeping.) Our mailing address will be on the return address label of the bands that we mail you.
Thank you again for your love, continued prayers, sharing of our story, and for wearing the “tiny warrior” bands.