Although I’ve written dozens of blog posts in my head over the last few months, none of them have ended up here. Somehow, it has oddly felt like nothing I could write would come out correctly, or do the feelings justice. I’ve been enjoying every moment I can with our little miracle and trying to adjust to how difficult it is to be a working mom. For years, I’ve coached clients who struggled with how to balance being a successful professional, and also be a mom to an infant. I had long observed that although the struggle included realities of exhaustion and time constraints, it seemed to have more to do with their maternal instincts and the sense that this time of their children’s life was irreplaceable and sacred, and way too short. That somehow corporate politics, business deals, and high heels seem a bit irrelevant and insignificant after creating human life in your womb, and experiencing something so profound and so real at first glimpse of your child’s face. Now, having been back to work full time since February, I’m directly experiencing this pull myself and handling it better on some days than others. Most days I try to remind myself that we’ve been through a very long journey that makes it even more raw, real, and heart wrenching to have to “think” about business strategy and reaching goals each day, rather than just embracing what I feel that I am right now…. a mom….in its entirety. This is not a new challenge for women, just a new one for me.
I’m extremely blessed and fortunate that I actually really enjoy my work and have designed a career that affords me a lot of flexibility and autonomy. I also have a wonderful husband who truly astounds me with how magnificent of a dad he is, And, it’s STILL ridiculously hard.
So, I remind myself that frankly, I may just be tired….or grieving…or both. I remind myself that nothing about the last few years has been easy, that my body has been through a lot, that being in the hospital under constant stress for 5 months was not a real maternity leave, that our hearts have been broken, as well as overjoyed. I remind myself that it will likely get easier, and that there are dear friends of ours who are STILL in the NICU, so we are blessed. I remind myself that someday I’ll “do something” with these emotions and somehow help other mom’s in a more meaningful way, because I’ve directly experienced this “pull” myself. I sure hope so.
“Mr. Quintin, why is Avery’s head oval-shaped?” Maddie’s friend was taking a break from their play-date to get a drink of water as I was placing Avie back into her swing after feeding her. Partially to discourage further such questions, but also to answer her honestly, I included in my explanation words like calcified and hemorrhage and plagiocephaly. “Oh, I see. Can I please have some popcorn?” My plan worked.
Plagiocephaly-“a malformation of the head marked by an oblique slant to the main axis of the skull.” However, more recently, the term has been applied to any condition characterized by a persistent flatten spot on the back or side of the head. There were many factors that contributed to Avery’s case of plagiocephaly. Among them were her premature birth, her early brain hemorrhage (and subsequent surgeries to relieve the pressure exerted from the hydocephalus), and the fact that from very early on her head was placed such that she faced to the right. Due to these external factors, her skull began to harden with the right side being very flat. See, I wasn’t lying to Maddie’s friend.
We recently took Avie to Cranial Technologies, a clinic that treats this condition by way of a helmet called a DOC Band. When used early enough these helmets can usually provide a dramatic improvement in the shape of a baby’s skull.
The miracle of Avie being with us was enough for us to both say that we did not really care about the shape of her head. But then we considered what she will likely say in ten years, (or less) when her self-esteem is based largely on her appearance. So we decided that we would take her in for a consultation. Unfortunately, there are some complications with treating our baby. As of right now she doesn’t have enough strength to hold her head up for long so the addition of six more ounces would decrease her level of head control. And then there’s the issue of her shunt. If it were to become constricted then the results would almost definitely lead to her being hospitalized for another surgery. So the treatment of her plagiocephaly will depend on how long it takes her to build up enough strength to hold her head upright. The good news is that babies can be treated up to eighteen months and her adjusted age will be factored into her potential treatment. The bad news is that with the need for a very custom helmet to be made to accommodate her shunt, our price will likely increase dramatically. And with each day that passes the success of the treatment decreases.
Perspective. Eight months ago we were worried about her mere survival. While we are still concerned about her current health, we are also able to now focus on her future appearance.
One reality of life is that none of us really knows where the next foot is going to land. By that I mean that we really don’t know what will happen next. Life is an adventure that way. Hurdles come and we have a choice of trying to go around them…
According to the March of Dimes website one out of every eight babies is born prematurely.
But life doesn’t wait for us…
I am growing! Today I weighed seven pounds and six ounces. I’m HUGE!
But most of the time I just sleep.
Avery will always be considered a preemie, despite how big she gets or how much she develops. I’m finding it difficult to answer one simple question that I will inevitably be asked anytime I take her in public. How old is she? The simple answer is her chronological age, six months. But then her size and development come into question. We are still trying to get her to break the seven pound barrier and while she does do somethings that a six month old does, she doesn’t do very many of them. Intentional rolling is still not a common thing. Reaching for objects is not that common. She definitely can’t sit unsupported. And though she definitely finds comfort with Robin and I specifically she has no fear of strangers. Therefore her corrected age of two months is a more appropriate answer.
Recently, though, the final tether to the NICU was broken. At her last appointment with the pulmonologist we were told that Avie no longer needs the apnea/heart rate monitor that we had come home with. I referred to it as the final tether because for the five months that she was in the NICU it was something that no matter how hard we tried to ignore, we inevitably were drawn to looking at it. When she came home with the monitor, though mobile, it was still something that we had to pay attention to and pull along with us anywhere that we went. We would have one extra thing to take off of her and put back on for bath time. We would have that one extra bag to cart with us to and from appointments and up and down the stairs of the house. It was both a physical and physcological tether to the NICU. And now freedom from those wires and that tether is upon us.
Though there will always be an emotional bond to the NICU and all that they did to help us bring Avie home, at least that physical feeling of being still attached is gone and there is one less question that we have to answer when we go out in public.
As I readied myself for bed last night, watching Robin feed Avery I was reminded of how much we all take for granted every day. When Maddie was born she was a strapping eight pounder. And despite the fact that she had to stay in the hospital for an extra two days due to jaundice, she was very strong from the beginning. When Robin got pregnant I told her to prepare for our baby to be the same way. Then, when we learned that we were having twins, I told her that we were in for double the trouble. But life has a way of throwing curve balls sometimes.
I never thought that I would be the father dealing with micro-preemie daughters and I wish that I had never had to learn many of the terms and procedures that I now know. I was always one that heard the stories and felt bad for those that were enduring the pain, but never imagined that it would happen to me. I wish that it never had. I wish that Robin had not gone into premature labor. I wish that the doctors had been able to stall the labor after it started. I wish that we had not lost Sienna. I wish that Avery had not been through so much. I wish, I wish, I wish. But as my Dad once told me, “you can wish in one hand and spit in the other and then tell me which one fills up the fastest.”
But as I watched the baby nursing I was also reminded of the miracles of the situation. As I wrote before, we were told right before we lost Sienna that we were also going to lose Avery. We were told that she would never have ANY quality of life and that she would NEVER have any normal motor function. It was recommended that we discontinue support.
Unfortunately we did have to make that decision with Sienna. Neither of us has ever shared that on this site and we’ve only told a few people in our real lives. We had watched her little body swell for days due to the lack of urine output, and when it finally got to the point that the nurse told us that she was at the highest dose of pain reliever that was possible, and she was still writhing in pain, that was when we decided that we could not allow her to suffer any longer. I have to remind myself daily, though, that WE did not actually make the decision, all we did was stop her suffering by allowing her to go peacefully.
But looking at Avery we just always had a different feeling. She seemed much stronger and she has continued to prove the NICU staff wrong. She takes all of her feedings by mouth, something we were told would not be possible (and something that our home nurse said surprises her). Avery clearly expresses herself when she is hungry and she sucks on her fingers to pacify herself, both of which I plainly remember being told she would never do. She reaches for things, mainly her mommy or me when she feels like she is going to be dropped. On occassion she rolls over. And during her exercise times I have seen her, more than once, push herself along the floor.
So, as I laid myself down I whispered to Avery that if I could be offered a deal that would erase all of the pain of the past six months, but would also not have her, I would refuse that deal. I then kissed Avery and Robin and I said the first thing that came to my mind. A Perfect Miracle.