“Your inside voice, called instincts, is trying to tell you something…use your outside voice to speak up. Just start talking and the words will come…don’t be shy, you can do it and usually you will be glad you did.” ~ Shannon Pruitt
So I imagine that some of you are thinking, what the heck, didn’t we already talk about instincts, and the answer is yes, we did, but what I am finding is that, this is a very very very (you get my point, which is good because I could use very for days to communicate how I feel) important topic. You may also ask, why I quoted myself. Am I that vain? The answer is no, and that I have literally said these words verbally and in writing 5-10 times in the last 3 days. So I will share them with all of you as it captures all I really want to say. As you may have guessed this topic is something I feel passionate about, partially because I have listened to my instincts (for the most part…and those times that I didn’t, I learned the hard way) for most of my life and they have served me well, but now, as a parent, I find them to be more important than ever. So what has sparked this soapbox speech you wonder? (And, I do apologize, for at this moment you should envision me up on a box wearing a tiara made of tinfoil and possibly a cape pointing my finger emphatically as I speak to you…and although I most definitely look silly and am still basically in my pajamas from this morning, thanks to the glamour of stay at home most of the day with the babies Fridays, you should listen to me because if there is one thing I am sure about at this moment is that, I am right!) So, the answer is you and me my friends. You and me.
Over the past few days, I have had several conversations with several friends going through different types of challenging scenarios. A complicated divorce, a friend having a lot of problems getting pregnant and considering IVF, a relatively new baby, A baby shower (you would be surprised just how stressful this can become), a non-diagnosed sick baby, a developmentally delayed little one with a mommy who is feeling alone and isolated, my friend whose dad fell ill and he has been occupied with his dad’s recovery and also his dad’s personal affairs, and finally a mom with child experiencing sensory problems who is being categorized by his teacher as “difficult and having behavioral issues”. And for each of the scenarios there seems to be one common denominator, everyone has been questioning or questioned their instincts and have either decided not to take action (yet) or have taken action and been right, respectively. Additionally, as I am on several email lists for different organizations including Sensory Processing Forums, Multiples Groups, and Mommy Blogs, in each of these environments I am seeing a lot of parents asking questions that on the outside seem like they are searching for advice, but the subtext is clearly they suspect something is off but are looking for reassurance from the group that everything is ok. When I see this, I seriously have a visceral reaction. My pulse increases and I can feel the warmth of urgency creep over me as I want to type as fast as possible, please listen to your gut. Don’t be pacified by people trying to make you feel better, if you think something is wrong, or feel like by asking some questions or approaching the situation differently you are going to be embarrassed, don’t worry about it, DO IT!!!! DO IT!!! DO IT!!!! Sorry for the all caps, but I warned you, I feel strongly about this. You are not being paranoid or overly sensitive or silly, and to be honest you may be not be perfect in your execution, but in the grand scheme of things, a little egg on the face never hurt anyone and if you are right, the benefits can change your life.
I have already shared the story of my instincts about E’s developmental issues, but what I haven’t shared it the day I think it started. There are 2 other people in the world who I think would corroborate this instinct, one is KSP and the other would be one of the Occupational Therapists who worked with us in the hospital. I won’t give all the details as it’s a rather long story and it may be detailed elsewhere at some point so I don’t want to do anything might hurt our recounting of the events, but what I will say it that on a very specific day of E’s hospital stay in the NICU I knew something bad was going to happen but I didn’t know just how bad and I didn’t know when, I just knew. But prior to that, the event that would stage the foundation for my instincts to trigger was driven by someone else’s instincts and to her, we will be forever grateful. She fought for our E to Doctors, Nurses and Administrators, but noone listened and we didn’t know enough, as I was still operating under the “you are the nurse, you are the doctor, you must know and be right, mentality”. So, in January of 2009 as we were nearing a 3 month mark of E’s hospital stay my 3 -4 weeks ish after the intial instincts were triggered, it was my turn.
As often occurs with preemies, E was low in certain minerals and in order to ensure she received these minerals, she would take them orally, aka through her bottle feeding. It also happens that these minerals usually taste horrible and depending on which one you are low on, the experience is one that a preemie will be glad they don’t remember, but unfortunately as a parent you do. For E, one of her minerals was Sodium Chloride. For those that have never done a shot of sodium chloride, you can go down to your nearest ocean and drink a couple of ounces of sea water and you will start to get the idea. In every bottle, every day, we have E sodium chloride because to give it all at once was a disaster. So for every bottle, every day, E would choke, gag, turn blue, stop breathing, significantly Brady or Bradycardia (this is what they call it when a baby’s heart rate drops and becomes dangerous, it’s quite common in early preemies, but should not be happening when a baby is full term like E was at this point) and generally scare the living day lights out of me and the nurses. We would take her little 4 pound body and pound her back trying to get her to breathe. It was horrible. I became fearful of feeding her and when I would cry as I tried to get her take down that precarious 2 -3 ounces. When I wasn’t feeding her, I spent countless hours with nurses trying to figure out what we could do to make it better: stagger the administration, adding cherry syrup, whatever we could think of. Nothing worked except the cherry syrup which helped a bit, but what I did know is that this wasn’t right, it shouldn’t be this way.
A few weeks later when the doctors changed teams (often in NICUs, primary Doctors and teams rotate every 3 weeks with the theory that a “fresh set of eyes” may bring a new perspective that will help the baby. There is an issue with this theory as well, which we learned early on, which is that not all doctors are the same. From medical views, practicing, and bed-side manner. If you have one doctor that you love and you feel like is advocating for your child, it’s very difficult when they rotate off your baby after their 3 weeks are up. For E, she was a bit of a NICU celebrity as at this point she had been there longer than most others and despite her challenges, she was in the least acute bay of beds, which was called the “Feeders and Growers” and meant you would go home soon. That wasn’t to be our fate.
The fateful day, there was a rotation change for the medical team. We had a new Doctor as her primary and I was informed after the morning rounds that they would be discontinuing her cherry syrup. As Q was home from the hospital at this point, I was home with him and wasn’t able to go to the hospital until that night when KSP came home from work (you were not allowed to bring siblings or visitors into the NICU at that point). I would check in the with nurses several times a day and that day happened to be one of our primary nurses (these nurses are assigned to your babies so that normally whenever they are working, they will have your baby) who we loved and she loved our E and Q, L. L was actually the one that had come up with the cherry syrup and so she called me immediately after rounding to tell me that the Doctor wanted to discontinue it because she didn’t want E to have the sugar, it was the best and worst thing that could have happened. I immediately asked for a family meeting by phone that day before E’s next feed.
On the call at 1:15ish was our new doctor, a nutritionist, an OT and me. I explained my concerns and I was informed that we wouldn’t be reinstating the cherry syrup. As we neared the end of the call and were rapidly approaching E’s 2:00 feed, I nearly panicked, but kept my composure and with a shaky, on the verge of tears voice, I asked the OT, and Nutritionist (who had also become my friend) to please go and supervise the feed as I knew it would be horrible…something bad was going to happen, my inner voice was on fire.
By 6 pm that night when I arrived at the hospital I walked in to find the new doctor bent over her trying to draw blood. She had had 2 blood gasses (this is when they cut a baby’s heel to draw blood in order to read the babies mineral levels etc.) Both of her results had come back with CO2 levels over 80 and were heading north. Normal C02 levels are between 30 and 50, this was not good and very dangerous . I cried and sang “Brown eyed Girl” (she loved this song) to her as I helped the Doctor hold her arms down so they could draw from her veins to confirm the reading. The reading was correct and getting worse. As it turned out, for weeks, as E choked and gagged and bradied and turned colors, she was aspirating. Little bits of fluid piling up in her lungs resulting in aspiration pneumonia. By 8 pm that night, they were intubating our precious baby girl and the look of fear on everyone’s face said it all…this was not good. I sat next to her in her incubator, drugged on pain meds (her not me, although in hindsight I should have asked for some) now in Bay 2 (Bay 1 was closed), and prayed. I cried and prayed and sat fragilely in the uncomfortable rocking chairs and nurses walked by, looked at me, and silently walked over to hug me. They knew it was bad too.
The moral of the story here is that, had I not made such a big deal that day and called the family meeting and sent the OT and nutritionist over, the Doctor may not have paid that much attention to E’s response to these feeds. But my inner voice told my outer voice to speak and I did, we will never know, but I believe it saved her life. I had no real idea what I was doing and why I only knew the facts and experiences I had had and that my instincts were telling me to do something, just speak. And speak I did.
My friend J whose dad is recovering told me of his experience with instincts and his dad which resulted in he and his wife referring doctors to an unknown medical study which may actually help unlock the impetus for his father’s condition. Based on this study, which the doctors had never seen, they tested his father for a specific enzyme. He tested positive. J listened to his inner voice and used his outer voice to tell the doctors his thoughts and ask them to take action. He did so respectfully yet forcefully and they did and he was right.
For every scenario there are stories upon stories I can share to advocate for acknowledging and acting upon your inner voice. If you suspect something is wrong with your baby or child developmentally or medically ask your pediatrician. If that still doesn’t sit right, get a second opinion. Another pediatrician, an OT, a PT, whatever it is, don’t be afraid, you are not cheating on them, you are doing what’s best for you and your family. It’s not like your hairstylist who will be mad at you if you go somewhere new to get your hair cut and then go back to them, this truely matters on so many levels and you do what you have to do (no offense if you are hairstylist, DS, I will not cheat on you:)). If you are having trouble balancing family and your own needs, do what is best for you while being sensitive to your family. If you are having trouble conceiving and you suspect it may be a problem and you want to have a meeting with a specialist, do it. You can only do your part and treat everyone as you want to be treated but you must honor yourself, honor your voice, honor your strength.
Sometimes you just have to start talking…the words will come. You can do it. And the worst that can happen is that you are wrong or right and neither of these things is all that bad if you know you tried and did the best you could. I wish you all the ability to just start talking…and remember what you are saying is your truth and that above all else is the best gift you can give yourself.