After signing off my last post on a happy note, just a week later – at the 26 week mark of my pregnancy, our world was yet again thrown into a whirlwind of tumultuous events. It was at my next ultrasound appointment that it became apparent that something was now happening with Twin B, the smaller baby of the two. What I thought would be a very normal appointment after what we had just lived through, became the inciting incident of the next part of our story.
My sister and I were sitting in the private waiting rooms – the rooms where the doctors come to talk to you after each appointment. I remember us thinking that the appointment and the time we spent waiting was running longer than usual, a lot longer than usual, when the doctor finally came in. He spoke to us in a very calm and collected manner, saying that the babies were still growing fine, but there was a concern with Twin B. He had extra fluid in his stomach that should not have been there and the doctor didn’t have a reason as to the cause of it. Immediately following this conversation, we both agreed that the best thing was for him to admit me to the Foothills Hospital for further observations. I would have time to go home and pack and the Labour and Delivery unit would be expecting my arrival.
The Foothills Hospital is a place that shows its experience well. The room that I spent almost an entire week living in was from another era – if only the walls could talk. During that week, I was frequently hooked up to monitors to assess the heart rates and movements of the babies. I quickly became adept at telling which baby was doing the moving. There were daily ultrasounds performed to monitor any changes and I was given steroid shots to support the development of the babies’ lungs in case the decision was made to deliver early. A doctor from the NICU (neonatal intensive care unit) came and talked to me about conditions that presented itself like this and again, gave me scenarios with different endings – some only slightly positive and some ending with carefully chosen, but dreadful words like ‘making the baby comfortable.’ At the end of the week I was able to go home as there were no changes in the ultrasounds and as long as the fluid wasn’t increasing or spreading to other parts of Twin B’s body then there was no imminent danger to the baby or the pregnancy.
However, things at home were no longer, ‘normal’. I was now a part of the ACCP program (Antenatal Community Care Program). Nurses visited daily and would monitor myself and the babies (heart rates, fetal movements, my blood pressure). The babies had to pass specific markers during the monitoring period and if they didn’t, I would get sent straight to the hospital. The first time an ambulance was called and a fire truck also showed up – talk about being dramatic. There was a second time, a third time, a fourth time and I lost count. All those previous times I got sent home after further monitoring, except for the time when they finally didn’t.
The end goal was to at least make it to 34 weeks. When I was admitted to the Foothills Hospital for the second time, I was given another round of steroid shots and back on daily ultrasounds and monitoring. The ultrasounds were showing diminishing conditions for Twin B and finally the decision was made that the babies had to come – we made it to 33 weeks and 5 days and on the afternoon of September 20th 2017, the twins were delivered via c-section, with Twin A at 3lb 13oz and Twin B at 3lb 2oz. It was quite a memorable day, from dad almost missing the delivery; to me lying on the table in the cold, sterile room, overcome with emotion and trembling with a cocktail of both fear and excitement. Time seemed to pass by quickly, yet everything played through by slow motion. That exact moment when I heard the first cry and then a softer, second cry – there are no words that could completely describe how I felt. I had officially become a mom.
The operating room was crowded with nurses and doctors, whom swiftly whisked the babies away to the NICU. The NICU unit was intense; there were many other tiny babies and babies with special needs. This was an experience I wasn’t entirely ready for. With the babies being born premature and with health concerns, the first priority was for the doctors to diagnose items that needed to be immediately addressed. Twin A had further echoes and ultrasounds done to try and confirm his vascular ring, but all the tests proved to be inconclusive (tests will be repeated a little further down the road). Twin B, weeks after the doctors found the extra fluid in his stomach had concluded, with further signs that he had a possible bowel perforation. He was not to be fed for the following few days, so that he could be properly diagnosed, instead nutrients were provided straight to his system.
The babies were on machines to assist with breathing, had feeding tubes and all sorts of wires connected to them for monitoring. My heart ached heavily for them. All I wanted was to have them both in my arms, to snuggle them and protect them, but initially, all I could do was stand aside and only offer the touch of my hand, not even able to lovingly stroke my babies – preemies apparently are easily over stimulated. I was so overjoyed that I got to finally meet my boys after feeling them move around and grow inside of me, yet I felt grey with guilt and sadness that I was not able to bring them into this world as a ‘normal’ pregnancy would have.
My breast milk was not yet established and so we relied on donor milk to feed Twin A, who was the only one to be fed. Two days passed from the day the twins made their entrance into the world and the doctors wanted to transfer Twin B to the Alberta Children’s Hospital. This meant that there was definitely something wrong. Later that evening, as my sister was visiting me at my hospital bedside, my phone rang and it was confirmed that Twin B had a bowel perforation and surgery was needed. It was to be a routine, simple surgery as I was told, but this was only the beginning of the scariest thing I have ever had to live through. I of course consented to the surgery, thinking nothing more of it, but as I was having cuddle time with Twin A in the NICU, a nurse approached my sister and me and asks if any family was heading to the Children’s Hospital, they needed family there right away. The nurse couldn’t elaborate any further, but told us to hurry to the hospital and head straight to the operating rooms. I felt like we couldn’t have moved any faster, that our whole bodies were filled with weights and that anything and everything was providing an obstacle for us to get there.
When we did arrive, dad had made it there first and was already waiting in the NICU meeting room. Not long after, the surgeons and other doctors came in single file, one after the other into the room. This was not good. During the surgery, unexpectedly Twin B started bleeding and they couldn’t figure out the cause – we came very close to losing him. When they did manage to stabilize him, the surgery had to end right then and there without any actual repairs being done. They packed everything back in and told us that we had to wait a few days before attempting to go back in. I was incredibly grateful, beyond any words, that my baby was still here, but the exact words of the surgeon were that we were ‘not out of the woods’ just yet. I cried like I had never cried before. I had never felt such pain.
The doctors ended up taking Twin B back into the operating room the next day and discovered that the source of bleeding was his liver. They took measures to help stop the bleeding and again, left everything as is and packed everything back inside. The following day he was again, taken back in for surgery. Twin B lost 4 centimetres of his small bowel and ended up with a double-barreled ileostomy. Basically both parts of his bowels (small and large, from where they removed the dead tissue) were brought up onto the surface of his belly. Any stool was supposed to be collected in an ostomy bag. The doctors wanted to give Twin B time to heal before reconnecting everything, especially after everything he had been through in the first four days of his life.
I was stuck at the hospital for almost a good two weeks, before they finally let me go home. They kept me after delivery mainly due to high blood pressure. Living through what I did with Twin B, I couldn’t maintain reasonable levels, worrying about him and his brother. In that time, I had two different roommates that had come and gone with their babies. To tell you the truth, I was envious of them. Actually I was envious of all the mother’s that got to go home with their babies. I felt so empty and robbed of the experience. It was nothing like what I had imagined the first moments with my babies would be like. I didn’t get a chance to really get to know them and at times, felt like the nurses knew them more than I did. I felt like I had failed as a mother, even though the depths of me knew that I was doing the best that I knew how.
While all this was happening with Twin B, on the other hand, Twin A was doing well and so we had him transferred to the South Health Hospital, which was many times closer to home for us. We worked on his feeding and weight gain and he eventually came home to us 27 days after he was born. We were spread extremely thin, often trying to visit both babies in one day. Twin B, after some time healing and proving that he was gaining strength at the NICU at the Alberta Children’s Hospital, we made the request to also have him transferred to the South Health Hospital. From there, we had a glimpse of extreme happiness when we got the news that Twin B was being discharged from the NICU and was finally able to come home after 55 days of separation, where we would finally be together as a family, but it was very much short lived (we had each other for only four short days), when we made the hardest decision to have him readmitted to the Alberta Children’s Hospital.
In those four short days, Twin B was upset during those times we attempted to change his ostomy bag and as we were having issues with the system working properly, he became too tired to finish his milk when it came time to feed, which further prevented him from growing and healing. While the decision was hard for us, we knew it was for the best. We felt a sense of incompleteness, leaving the hospital that night. It didn’t feel right at home without him there. However, we had some comfort knowing that doctors and nurses were looking after him.
It wasn’t too long before we got the news that he was finally scheduled in to have the surgery to reconnect his bowels. It was December 1st and the surgery was penciled in for first thing and he was booked in for the whole day. With Twin B’s history with surgeries, we were a combination of excited, nervous and scared, but for me, mostly scared. I got to the hospital that morning with my mother and his brother, Twin A in tow at six in the morning. Dad had to work, but was just as nervous and scared as everyone else was that day. The surgery took about four to five hours. It was the biggest relief when the surgeon came and gave us great news, saying the operation was straight forward and everything was in great shape. The next step was to give him a day or two to rest up and gain strength from the surgery and then progress onto taking bottles of milk.
He was doing amazingly well, but knowing our luck, four days later, while still laying in bed beside the crib with Twin A sound asleep and dreaming sweet things only babies dream of, my phone rang at 7:00am on December 5th. I remember it so vividly. I looked at the number on my phone, it was the hospital. I was only just thinking happy thoughts of Twin B making his way home to us soon, with all the headway he was clearing, but alas, it was one of the surgeons on the line. Overnight Twin B had gotten ill and there was seepage coming out of his fresh incision where the stoma was reversed. There was something leaking and he needed to be taken back in for another operation. My heart dropped to the bottom of my stomach, I rushed as quickly as I could out of bed and gathered Twin A up. Luckily, my sister had just gotten back from a night shift at work and insisted on coming with us to the hospital. I am so thankful that she made it home at that time.
We got to the hospital and raced to Twin B’s room, but the room was empty. His bed was gone. I had wanted to at least see my baby off before he went back into those rooms that he had become familiar with all too many times in his young life. This was to be his fifth time being wheeled off. I searched for someone that could give me an update, but my nurse was nowhere to be found, so we waited patiently in his room, anxious, sad and worried. The heaviness on me lifted a tiny bit when the nurse came back with our baby in tow. They had taken him down for an ultrasound.
I cuddled him with so much love before it was finally time to let him go. I waited with him in the operating waiting rooms. I hated that room. I always try my hardest to fight back tears down there. I remember the first time I walked into that room, when we took him for his second surgery, when we weren’t sure what the future had in store for us, his eyes had been closed the entire time and he was completely out of it from all the pain medication he was on, but in the very brief moment before they took him, he opened his tiny little eyes and looked right at his dad and I. I think he knew what was happening and was giving us a sign of hope. I broke down completely right then and there.
The surgery itself only took one to two hours and Twin B only required three stitches at the site where the leakage took place. We were in such a state of distress, as it had been hours, long before they finally let us see him and gave us an update on how he was doing. Apparently the hospital could not track us down, after shuffling us from one floor onto another – even though I had my phone on me and we were in the waiting room of the PICU (Pediatric Intensive Care Unit) the whole time. The next plan involved not feeding him this time for 11 days, to really give his insides a chance to heal up before letting him bottle feed again.
Those 11 days seemed to stretch as far as it could. We didn’t know what to expect and in the back of our minds, there was a nagging thought that something may happen to set us back yet again. But the 11 days passed and soon enough we were finally told that we could take Twin B home, this time for good. We spent the night of Christmas Day at the hospital with Twin B – Twin A, his dad and I. It was the beginning of one of the happiest moments we would share as a family. So after another 39 days at the Alberta Children’s Hospital, after being discharged from the NICU at the South Health Hospital, we finally took our boy home on Boxing Day, December 26th 2017.
It has been a month and a few days that I have experienced having both my babies home. Although it has been the hardest job I have ever had to do, becoming a mom to my boys, I wouldn’t trade it for anything. Twin A, big brother we named Kingsley Vicente Muscedere. Twin B, little brother we named Soren Royce Muscedere. Their names were derived from dad’s middle names. All of myself, I now give to them, feeding, playing, changing, bathing and the list goes on. I finally have my chance to get to know them and in turn have them get to know me. As a mom, I have become dependent on coffee to get me through the day – two cups minimum and have learned the true meaning of patience.
I am ecstatic to start this next part of my life with this one true story of a beginning. I am again, so thankful to everyone who had us in their thoughts and for you, who has taken time to read through all these words. I hope to share more, any chance that I can get – I know those are limited however, as it has taken me an entire month to get this post written and finished to be shared.
And with that, I’m off to check on a stirring baby…
Until next time,