Okay guys, I guess I didn’t make good on my weekly writing resolution but a couple weeks vs. a couple months (as per my usual) between posts seems like an improvement and I’ll take it!
And I won’t waste any time here.. I feel a bit more vulnerable with this one, so let’s see if I actually hit publish when I’m done.
(*edit* I have actually had to write this post twice. I got through it two Saturday nights ago, chickened out before hitting ‘publish’, wanted hubby to read it over first and then for some reason it never saved. The internet has been spotty and awful lately- maybe that’s why? Went to add some pics and edit three days later, and UGGHHHH only the first paragraph remained… Let’s see how much I remember. Here goes…)
I’m just going to say it, girl, I was so scared to love you. I had just begun to recover from the initial shock that there were two of you in there to begin with, then all of a sudden things were not looking so great. There were a solid three days between receiving the awful ultrasound results from my OB and waiting for the specialist appointment on the Friday that we didn’t know if we were going to have any babies at all.
This particular ultrasound at 17 weeks showed evidence of Twin to Twin Transfusion Syndrome (*note* all twin pregnancies, especially twin pregnancies where the babies share a placenta-known as monochoriomic- should be monitored closer and scanned more frequently than singleton pregnancies*). My OB was not an expert in this area and he advised he was sending me to the “best of the best”, though he said that in cases like these you may lose one, both, or none of the babies. Not helpful for my anxiety as I awaited the call from the maternal fetal medicine clinic at Mount Sinai Hospital. I was devastated. Then the mom guilt set in, and all the wild, unreasonable thoughts that bombard you when life is suddenly out of your control. Did I somehow cause this because I wasn’t immediately thrilled about having twins? I’m not going to lie baby girl, I was beyond shocked when the ultrasound tech told me I had two babies in my tummy. Hot tears ran down my cheeks and the tech had the nerve to ask me if they were “happy tears”. I remember telling her that I “didn’t know yet”. I didn’t yet know the magic in hearing you two squeal and giggle and chat in your beds, playing when you should be falling asleep. I didn’t yet know the amazing bond I would witness growing before my eyes. I didn’t yet know that I was strong enough, wise enough and bad-ass enough to be a twin mom. I only knew that I was scared. I was scared of double sleeplessness, double diaper changes, double feeding, double trouble. Being a paediatric occupational therapist, I also knew that twin pregnancies usually meant double the chances that something could go wrong. And well, this anxiety was now affirmed.
Our appointment with the specialist confirmed what my OB suspected, Twin to Twin Transfusion Syndrome (or TTTS). You and Evelyn were sharing a placenta, and through some shared blood vessels you were giving away the precious blood and nutrition you needed to grow and thrive. There was a serious blood flow issue. The doctor told us that not only was there this blood flow issue, but Evelyn was not sharing the placenta very evenly with you (also known as selective intrauterine growth restriction, or SIUGR). That girl, even to this day she will pluck food from your lips and toys from your finger tips- she still hasn’t given it up. We are able to joke now that it all started in the womb, but back then it was not a laughing matter. The doctor told us about various surgical options to proceed. We could easily resolve the TTTS with an in-utero laser surgery to cauterize the responsible blood vessels, but we could not change how the placenta was shared. The fact of the matter is that they just didn’t know if you had enough placenta to make it to viability. There was a very real chance that you would stop growing completely, that you would tap out all the resources your small share of the placenta could give you, long before you were big enough or strong enough to be delivered. In severe cases of SIUGR, we learned that sometimes doctors recommend to block the umbilical cord of the growth restricted baby to cut off all shared connections completely to protect the other twin. If one twin is likely to pass away, outcomes for the surviving twin are more favourable when this happens earlier in the pregnancy.
Honey, the doctor gave you a thirty percent chance of making it at all. But here you are. And on that morning before we had the laser surgery for TTTS, the doctor reviewed all the numbers and measurements from one last fateful ultrasound. He looked at us and I’ll never forget him looking me in the eye to say, “Well, I wouldn’t count this little one out just yet”. What a motto that has been for your little life, my love.
I wish I could say it got easier from there, but it didn’t. I think that I thought over time, over a few weeks, we would see you distinctly improve or decline. That the “not knowing” would become known, that I might be able to begin to prepare for a best or worst case scenario. Instead, we rode a wild roller coaster that I couldn’t wait to get off of.
I am a very factual person. I love science, and statistics, and all things known and planned. This may be because I am a somewhat anxious person you might say, so facts and figures bring some safety and order to my disordered thinking. An undergraduate degree in science may also have something to do with it. And let’s just say this Livvy Boo, probabilities were not in our favour up to this point. Twins= rare. Identical twins= rarer. Identical twins that develop TTTS= rarer yet (about 15-20% of identical twin pregnancies actually). Identical twin pregnancies that develop TTTS AND SIUGR= you’ve got it, even MORE rare. So this is where most of my guilt comes seeping in. This is the part I have had a hard time saying out loud. I really wish that I could say that I was one of those moms who knew without a doubt, with absolute certainty that you would be a miracle. A baby that defied all odds, that slapped those statistics in the face, and turned this whole thing around to get on the winning side of these terrible probabilities. But I just couldn’t help but be pessimistic, things had already gone so wrong. We had already been on the losing side of the crappy odds lottery so many times. My head and my heart were at odds. I was so scared to love you. I was so scared to dream you to life because then it would hurt so much more if you left me before I got to even meet you. So, I would sit there staring out the window of the train on the way home after so many of our biweekly specialist appointments, reviewing the newest report from the doctors, scouring over your numbers and growth, just wondering how in the world a baby so tiny could possibly survive.
Olivia is the triangle in the charts above… never any where near the growth curve…
Well below the first percentile. That’s how small you always were every week. I think actually the growth charts usually put you at the 0.1th percentile for growth. One tenth of a percentile. It didn’t even make sense that week after week your heart kept beating and your legs kept kicking, but you never caught up and you never really got worse. You just literally kept on hanging in there by a thread. Each time, the doctors were not able to give us any better of a prediction of your outcome. That the risk always remained imminent that you could take a turn for the worse at any time. And, you would think that each week I would be grateful. So relieved to know you were okay, but instead sometimes I was angry. I felt as though I was getting strung along, that each time I was getting more and more used to the idea of you- my head would tell me to slow down, be ‘logical’, miracles don’t really happen in real life. My heart wanted to let you in, but it put up a wall to protect itself from you. to keep you from breaking it in a million pieces. The unknown was becoming unbearable, if I would never meet you I just needed to know NOW.
Days passed, weeks passed, goals and milestones were discussed with doctors. When it would make sense to deliver you girls, what signs we would look for, how much you needed to weigh. Our main specialist believed that 32 weeks would be the earliest we should intervene. I was admitted to the hospital at 31 weeks and 1 day (on my birthday), and we scanned you every day. I took steroid shots and waited for a sign.
The steroid shots caused some improved blood flow to you for a couple days and you looked great in there, baby girl, but on the morning of Friday, February 9, 2018 the ultrasound showed you had some fluid in your tummy. The doctors didn’t know what that meant yet, but we had met our goal and there was no sense in keeping you in there any longer and risk you getting sicker. You were officially better “out than in” and our most recent estimates indicated you should be bigger than a pound (what most doctors consider the minimum weight that a baby can be born and likely still survive). I called your dad at work (who luckily was just a few city blocks away from us) and told him, “we are having the babies today”, then sat crying on my hospital bed waiting for him to take the subway to join me. We waited for our turn to for a c-section delivery to meet you. I had never been so scared in my life. I had never seen a 1lb baby before, I didn’t know what to be prepared for. We knew they would take out Evelyn first. If all was well they would bring her on the “other side of the curtain” for me to take a peak at her before they whisked her away, but we knew that you would be taken straight to the resuscitation room for the doctors and nurses to work their magic on your tiny body and make sure those little lungs were working. I would have to wait until I was stitched back up before I would lay my eyes on you. I can’t even tell you how beautiful your little squeal was when I heard you for the first time, “was that her? was that Olivia?” I asked Sean. It was, you were crying and trying to tell me you were okay. “Just rest, mama, you will see me soon”.
Last bump picture in the hospital the night before you were born, no idea tomorrow was the big day…
Laying eyes on you for the first time…
Holding you for the first time
You were here, you had made it. I finally began to rest in the idea of you, in awe that we were a family of five. For some reason, the doctors decided that we would wait until Monday to do an ultrasound of your abdomen, to take a closer look at what we had seen going on in utero. I took this as a sign that it must not be too serious. I held you for the first time on Saturday, hands trembling and eyes watering, I couldn’t believe it was real life. That’s it, we need a van! Move Emma to the small bedroom because the twins need to share the big one! We could finally start to plan for our newly expanded family. I had been unable to properly “nest” all this time. But then, your tummy seemed to swell a littler larger, looked a lot more red, and shiny. The doctors did more tests and some X-rays. Something was wrong, really wrong.
We knew all along that then when a fetus’ growth is severely restricted in the womb, that they will prioritize nutrition and blood flow to more important structures like the brain and heart. Our doctors always assured us that you were very smart that way, my little one. And one of the first places to miss out on the good stuff is the bowel. Yours was very delicate, and well, it had ruptured. You were rushed for emergency surgery to the children’s hospital across the street (SickKids) through underground tunnels while your father had to push me in wheelchair out in the winter air, me still not able to walk the distance having had a pretty serious surgery myself. At two days old, and with a weight that had dropped below 700g, you met your angel that night. Your surgeon was able to find the hole in your incredibly tiny intestine and remove the damaged inch and a half of bowel. You were too small to risk any blockages from scar tissue so instead of sewing those tiny ends back together, he gave you an ostomy. I know this is the part of the story you will have me tell over and over as you grow, munchkin, you pooped out of a hole in your tummy into a bag for the first seven months of your life. Then that same angel was able to sew everything back together in September and now you have that big battle scar on your tummy to show everyone what an amazing fighter you truly are. I am going to raise you to be so damn proud of that scar; you are incredible, you are amazing, you are SO strong. You’ve been through more than many adults have been through in their lifetime, and baby girl you are just getting started.
First time holding you after your surgery, it took three people to safely place you in my arms due to your breathing tube. Between your breathing tube and new ostomy healing on your tummy I was scared to move a muscle. It was so much work to get you out that they said I could t put you back for at least an hour otherwise it wasn’t worth the calories you would burn in the process. I made sure I went to the bathroom and then sat down for the most still hour and a half of my life.
You spent 10 weeks kicking ass and taking names in the NICU, and you finally came to join us at home on April 22. Your weight gain has always continued to be incredibly slow, Evelyn always a giant compared to you. We battled through some pretty awful reflux, often vomiting entire feeds, mama in tears because I knew your tiny body couldn’t afford to lose those calories. I cared for your ostomy at home, being trained by nurses to change the bags and clean the area (never in my life did I ever think I might touch my own daughter’s small intestine with my own bare fingers). I continued to pump breast milk every three hours, as you weren’t yet strong enough to breastfeed and all your bottles needing to be fortified with formula for even more calories. Those initial weeks at home are a complete blur: a tight three hour feeding, pumping, sleeping, cleaning and sterilizing bottles and pump parts schedule. I’m not even sure how we pulled it off, thank god for Grandmas. Our family was home, we were complete. We would figure out the rest.
You have shown us the true strength of the human spirit, you’ve defied odds and logic. Your teeny tiny body, voice and presence make my heart swell. Evelyn would be lost without you. Whose head would she bang her toys on if you weren’t around? Who would keep her company while falling asleep? Who else would look at her so damn lovingly? (I mean we do too, but there is just SOMETHING about the way you do).
Everyone that meets you comments about how wise you look behind those sparkling eyes, you seem to have a wisdom about you beyond your years. You truly look into people, connect on a deeper level, you are special little one.
You are one, but have already fought the battle of a life time. The doctor’s appointments have finally stopped, you keep rocking all your developmental follow ups, you’ve made me believe in miracles. We love the crap out of all 12lbs of you. You are our “little nugget” and this is your story. I will forever have to give the short version of this story to strangers, as I can tell they are very confused when I say you and your sister are “identical twins”- your size difference makes you look very different. But that’s okay, I will tell this story over and over again. So proud of what you have accomplished baby girl, and to be honest, so proud of our family for the strength it has taken to get through the last year. Happy birthday, here’s to many more. I still can’t believe you are here.