“It doesn’t seem like you are,” Avery’s nurse said in response to me telling her that I am fully aware of the fragility of our baby girl. The nurse had just been talking about how Avie has to prove that she can do certain things and that the staff were currently challenging her to make those improvements. My response-“I’m glad we’re now talking about challenging her and making her prove things rather than merely keeping her alive.” To me this was an optimistic but also realistic assessment of where Avie is. But the nurse said, “she’s still very fragile.” We are obviously having a break down in communication these days.
Little more than a month ago the talk about Avery was whether or not they could keep her alive and still reeling from losing Sienna, both Robin and I were waiting to breathe. We would call the hospital at least twice each day on top of our twice a day visits and we would measure progress by hours that she was hanging on. And then we started seeing little steps of real progress: a little weight here, off of the oscillator there, decrease on the ventilator, a little more weight, onto CPAP, being able to hold and bathe her. Progress is progress. I never once said that Avie was on the home stretch, but it must seem to the nurse that I was losing sight of where we are in this process. I have not.
I am fully aware that Avery still has a long journey home. She will need to gain almost one more pound just to have her next operation. That procedure will be to place a ventricular shunt that will drain spinal fluid from her brain to her abdomen so that it can be reabsorbed. In addition to the extra pound of weight, I am fully aware that it will be at least another four weeks before they will even consider doing the surgery. And I am fully aware that with each surgical procedure there are risks. Oh yeah, and she is still only thirty-three weeks of gestational age. She still needs to learn to eat (suck, swallow and breathe all at once), regulate her own temperature, and continue to breathe while she is sleeping. Then there are the other issues that she faces. Her lungs will, without doubt, still be affected by her premature birth. She is at a high risk for Retinopathy of Prematurity (ROP), a potentially blinding disorder that affects many premature infants. Her brain injury was severe and thus she will require many therapies. And these are just a few of the issues that I (we) are already aware of, there are many more that one has problems remembering and that have not yet been discussed. But can one really fault a parent for soaking in the positive progress and reveling in it?
In the past weeks we have seen iv’s and temperature probes disappear and replaced with clothing. We have seen her weight soar to a point that is now almost three times that of her birth weight. We have seen growth that makes nurses who haven’t seen her in a week or two do double takes (and the stabilization of the growth of her head circumference). We have seen her feeding, which is currently done transpyloric (a process by which a tube inserted through the mouth or nose bypasses the stomach and goes straight to the intestines), increase from 1/2 cc every twelve hours to 8 cc every hour. We have seen Avie respond well to kangaroo (skin on skin) care. And we have been told that she is now “less critical,” and that is why she has been placed into a smaller isolette and will likely be moved to another spot in the room in the coming days and then to an open crib, when her temperature is more stable. Although I know that this journey is far from over, I feel that we are entitled to a bit of celebration when we see these bits of progress.
Robin and I still face an uphill battle and while I still hear the sound of the Peanuts teacher (blah blah blah blah) when many of the coming processes are discussed-I have taken this approach because it helps me to focus on what is in the most immediate future-I am starting to see a small glimpse of the light toward the end of this almost endless tunnel. We had been told that she would not go home at least until her actual due date, if she is progressing accordingly. But her due date is now less than two months away and she is progressing and with that progression I am beginning to think about the departure from the messed up world of the NICU more and more.
While there really is no telling what’s next, I am becoming slightly more optimistic. We have a long way to go yet, but we’ve also come a long way. I am finally allowing myself to focus a little more on what’s next. I think we’ve earned the right to do so.