What’s Next?

“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.

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9 Responses to What’s Next?

  1. Erin and Steven Shillingburg says:

    i think in times of uncertainty all you have is optimism and faith… so while Avery isnt out of the woods and still could and probably will have set backs you cant dwell on those. you cant sit worrying about whats going to happen next you have to live in the here and now! i am sure the nurse just wanted to make sure that you didnt believe Avery was out of the woods, im sure she didnt want you to have a false scene of “safety” in this…

    my youngest son has 3 major food allergies. i have had many friends say “i dont know how you do it! i would go insane having to deal with that!” but i always respond with ” I am blessed he is in relatively good health and he is such an amazing little man! i am hopeful he will out grow at least some of these allergies”
    i guess what i am trying to say is when we got the diagnosed of the allergies we could have lost it and let them consume us, but we didnt. We instead put on our big kid pants and are pushing through it! (not that what were going through is ANY thing near what you are!)
    i guess what i am saying is you are her parents trust your gut feeling! you need to hold her thinking of the future not the tubes that are surrounding her. you need to hold her in visioning her sleeping in her beautiful nursery in her crib with no medication tubes in site! you need to be able to in vision her rolling over for the first time or her big sister holding her for the first time..

    ((hugs and prayers))

  2. Travel Mommy says:

    I agree with Erin and Steve. The nurse is just trying to bring you into reality, but you can’t dwell on that, as it will drive you crazy.

    My husband, Mr. Eternal Positive Thinker, was crushed when he realized that the reality that HE was holding our preemie in wasn’t actual reality. In fact, when Aidan’s due date rolled around and Aidan wasn’t going home, my husband got very mad.

    I, however, was not mad. Because I had been preparing for this and it wasn’t a surprise.

    I think there is a definite balance that you have to find for yourself between being excited for the future and living in the present. You don’t want to be dissapointed or mad if you aren’t getting what you want, and on the flipside, you need to be positive and excited about a future life with Avie.

    So, a little bit of reality from me (and I am writing this as a friend)….Aidan, a 26 week 1 lb-er, was released from the hospital 2 months after his due date. And he definitely didn’t have the brain issues that Miss Avery has. So, don’t live too near the due date…just take your excitement in the day to day progress like you have.

    And, Aidan, who is now 19 months, still has many many issues from his prematurity. So it doesn’t end when they leave the hospital. Yes, you have a beautiful living baby, but the frustrations, sadness, and grief still lingers.

    And it is very hard!

    But you have faith, you have God, and you get through it. Your family is strong, I can see that in all the great comments, and you will make lifelong friends and a support network in the NICU.

    I wish you all such joy in bringing little Avie home 🙂

    Sarah and Aidan (The Great Potato)

  3. Ria Waugh says:

    Life is a balance and for every negative there is a positive, and you should never deny yourself the right to celebrate the positives. They exist and Avery shows you something new and positive everyday! Embrace it!!!
    Continuing to send love and prayers your way.
    Love, Ria

  4. Nicole Malachowski says:

    You have every right to celebrate all of her victories. The NICU angels (the nurses and doctors) do amazing work, and see many things. Alas, they view things through a certain lens. There is only one Avery, and she has one mom and one dad. Only you can view her through the lens of a parent. Progress is progress, she continues to inspire so many people….even NICU angels who find it tough to be attached to so many beautiful babies….especially one as miraculous as Avery. We are celebrating her victories with you!

  5. Angel Roggenkamp says:

    Dear brother,

    If we as parents do not feel a positive experience about our children then we live a constant negative approach. Negative is a battle within one that takes less than positive energy. You and Robin have been through way too much within two months that can make it so much easier to feel negative. But yet the strength that both of you have is what gives that little sweet baby the courage to fight on. You keep looking into that light that is there at the end you will find that God only gives us what we can handle. Let us not forget the overwhelming loss of Sienna. So as a parent as a mother you CELEBRATE Avery hanging strong you CELEBRATE the fact that she is fighting not only for her but for sister. God gifted you both with twins. Sure, it hurt losing Sienna. But, Avery is is being protected by the tiny hands of her sister

  6. Nancy says:

    Robin and Quin,
    Just want you to know that our prayers never waver. Our bracelets are still proudly displayed and we are celebrating all of Avie’s milestones along with you! We love you!

  7. Diane Sheridan says:

    You have every right to think positive thoughts about Avies progress, and trust me when I tell you that she can sense those positive vibes from you and Robin. Her newest pictures are proof of her progress and she is soooo beautiful, you can see the love and contentment on her face. I know you both have thoughts running through the back of your mind of things to come and you will handle them in the same strong willed manner that got you this far in her progress. I have faith (like Baby Avie) that Jesus loves her and that he and Sienna Grace will keep you all strong throughout the journey. Quin, you and Robin are doing what you feel is right so keep up the good work!! Avery Rose is proof that your love, faith, and positive energy are just what the doctor ordered. Love to you all!

  8. MoDLin says:

    You certainly have earned the right to focus on what’s next and celebrate Avery’s achievements, of which there have been many. You sound as if you have a realistic view of her current condition and the many challenges that lie ahead. You know there are no guarantees, but you have a right to think and feel positively and I think that’s a good thing.

  9. Christy Young says:

    You should celebrate every positive step forward. The nurses have to live in the world of NICU reality, but us parents live in the world of hope and faith. We celebrate every tiny step. We dream of the day our tiny little mircle is finally home and in our arms forever. The doctors and nurses filled our heads with all the scary things that could or might go wrong and I’m thankful today to say they were wrong. My beautiful 3lb 4oz 11 wks early baby girl is now a healthy normal almost 21 yr old. She came home before her due date, hit every mile stone on time(never followed her adjusted age). She is perfect. So dream your dreams, celebrate her every step forward cuz only God knows what the future holds and science and technology can’t predict everything. Unexplained miracles happen every day and Avery is living proof of that.

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