I dream of this...

I never got to hold both of my babies at the same time. It just wasn't something I was able to do. They were both born at the same hospital, but Julian was taken to Sick Kids and Jean-Luc remained in the NICU at Brampton for 11 days. Once they were born, they were separated. They never saw or were with each other again. They spent almost 9 months growing together and I dreamed of holding both of my baby boys in my arms. I waited patiently for the moment I could look down at both their faces at the same time - it never happened. I feel terribly sad that I not only didn't get to hold both of them at the same time, but that they never were with each other again once born. 

I have been having a hard time the last few weeks, at times I feel like I am hanging on by a very thin thread. I have been having mini panic attacks while trying to fall asleep at night. I start thinking about Julian and my chest starts to hurt, to the point that breathing gets hard and I have to remind myself to calm down and focus on my breathing.

I miss Julian. I am mourning his absence from our family, he is missing and I feel it ALL the time. My daughter, who is 2, was looking at pictures of the babies with me. I was trying to explain that Julian is not here anymore, but Jean-Luc is here with us. She remembers that there were TWO babies in mommy's tummy, but doesn't always understand or care that we only have one baby now. She is two years old and her brother Jean-Luc is the best to her. Anyways, when I told her we don't have Julian, she said "Mommy, we need to find him" - it broke my heart. She thinks he is not here because he is missing or we didn't bring home. I wish I could find him and bring him home for her, we all just miss him in our own ways right now.

Life

Losing Julian has showed me how life is such a precious balance and demonstrated how easily it can come to an end. I miss the days when I felt invincible. When I thought mothers had children, grew old and watched their children have children, and then died peacefully of old age. I knew people died before growing old everyday, but until it touched me personally, I just didn't think it could or would happen to me. But it did, and now I find myself thinking about death all the time.

I feel like I am just waiting for the next tragedy to hit our family, that something will go wrong and we will lose someone else. All it takes is a wrong swerve of a car, one single cell in the body to begin to divide abnormally, anything really - anything can happen.

I found out yesterday that a friend of the family lost her baby at 6 weeks due to SIDS. The funeral is today. I feel the mothers hurt, I feel her pain, sorrow, loss and sadness. This just shouldn't happen to any mother.

Hearing the news of another baby dieing has me on edge. I thought I was doing better, but it has made my memories of losing Julian fresh again. I'm also, once again, paranoid about SIDS. I was worried about SIDS long before I lost a baby. With my first born I was always worried when she was sleeping too peacefully or sleeping for what I felt was too long and was quiet in her crib. I can't count the times I thought the worst and ran into her room, only to find her fast asleep and just fine. After Julian died (and his death had absolutely nothing to do with SIDS) I was so nervous that I would bring Jean-Luc home and something would happen to him. I insisted on using an Angelcare monitor in his bassinet. It helped me sleep at night, just knowing that he was breathing and if he stopped for any reason I would know almost right away. I will be keeping him on that monitor at night for as long as I can.

The baby that died this past week died when his mother put him down for a nap. Jean-Luc often naps in his playpen, swing or car seat - so I have been paranoid about checking him like every 5 minutes since I heard the news. I know I can't keep him on a breathing monitor all the time, but I sometimes wish I could. This kind of news makes me crazy with worry. Like I said at the beginning of this post - life is so very precious.

Mother's Day

Last night while trying to fall asleep (it was already past 2 am), I realized Mother's Day was on the 13th this year. May 13th will also be 4 months since Julian passed away. I don't know how I will feel on the day, but last night when I realized Mother's Day was on the 13th I had a silent sob fest into my pillow.

I know...but then I remember...

I know Julian isn't here. I understand that Julian is dead. I see his twin brother everyday, and I know I don't have my other precious baby. But sometimes it still doesn't seem real. It's like it never happened - like I never carried twins, gave birth to twins or held both of my boys, yet ended up with only one boy.

I think it doesn't always seem real because I have Jean-Luc. He is such an amazing baby and he makes me thankful everyday for all my children - and he does an amazing job of temporarily distracting me.

But there are times, when the the house is quite and my kids are sleeping, I'll glance at the photo display of ALL my babies and remember I have another beautiful baby boy. A baby boy who will always be my baby. And I remember (really remember) how I was supposed to have "my boys" - two babies.  I remember how I set up a nursery for two, bought matching outfits for two, and dreamed of my three children growing up together - but now I only have two children I can watch grow up.

It is when I am alone, I remember what I have lost. I look at Julian's pictures and realize I will never get to hold or touch my beautiful boy again. My heart starts to break over and over again. I start to feel guilty for almost forgetting (I never really forget, but some how I have long periods of feeling happy) and then I feel broken and sad. I hold his pictures and quietly sob and weep for the baby I will never be able to hold again, never be able to watch play with his lovely siblings, never be able to watch grow up and see the man he could have become. And then I get angry. I get furious and start to play the whole scenario over in my head, and I question the decisions I made the morning I delivered, I question the decisions the hospital made before and after the delivery - I just question and question. I know there is nothing I can do now to change the past, but I am not over what has happened and I will never be over what has happened.

I miss my boy everyday.

Tomorrow...

Tomorrow will be 100 days since my babies were born. Where did the time go?

I am so happy to be celebrating Jean-Luc's 100th day tomorrow, but as I sit here thinking about what tomorrow will be like, I'm suddenly starting to feel a bit overwhelmed with sadness. Something very important will be missing tomorrow - our dear Julian will not be here to celebrate 100 days with his lovely brother.

Losing one of our twins has been a roller coaster of sadness and happiness for me. I am constantly amazed, happy and smiling with my little Jean-Luc. And then I remember, something is missing - Julian. (Insert heavy sigh...life is so not fair sometimes.)

Happy 100 days Jean-Luc - we love you so much, thank you for making us smile every day for the last 100 days!

Julian - we will be thinking of you often tomorrow. We have loved and missed you for 100 days and will continue to do so forever more!

Part 3: My First Day as a Mother of 3

Once I arrived in postpartum I was greeted by the same nurse who looked after me when I had my daughter just two years prior. The nurse and I didn’t really mesh well the first time and I was a little disappointed that she was my nurse once again (I delivered in a pretty big hospital and the odds of getting the same nurse two years later seemed crazy). As I was wheeled into my room sans baby (in my case babies) I told my nurse I was going to rest just a bit before I went back to see my babies. She obviously was oblivious as to what had just happened and stated that I needed to rest and I could get up and see them in 8 hours. I was quietly furious and I silently cried alone in my room.

My parents had arrived as I was leaving recovery and my husband was taking them to try to see the babies as I was being settled in my room. Once they got back to my room, I burst into tears and told them that the nurse said I wouldn’t be able to see the babies for at least 8 hours and I was very upset about it. Either my husband or my mom went to the nursing station and must have said something to my nurse and the nursing staff, because once they knew our situation they were all a lot nicer to me.

We went through the whole ordeal with my parents multiple times. We were waiting for the team from Sickkids to arrive to take Julian to Sickkids hospital. My husband went back and forth between the babies and me while we waited. We were updated on Julian’s condition, he was alive but his blood pressure was still unable to remain stable, even after the special team from Sickkids arrived. They decided to move him to Sickkids despite still not having him in stable condition. They began prepping him for transport. As promised, they wheeled him to my room before he was taken downtown. He already looked less like the baby I had seen just a few hours before. When I first saw him he was alert and looking around, we made eye contact a few times and he was responsive to noise and my voice. The tiny baby they wheeled into my room looked even smaller, puffier, and absolutely covered in wires and monitors. I was in terrible pain from my c-section, but forced myself to sit up and lean over to touch Julian’s face and tell him I loved him. I once again said my goodbyes to my little boy. I was stuck in the hospital, I had just had a c-section, I had another baby in the NICU in the hospital I was in and I felt torn between my situation and my two babies. My husband was going to stay with me and Jean-Luc for the time being. The Sickkids team told us we would be updated on Julian’s condition when they arrived at the hospital and then we could call as frequently as we wanted to be updated by his nurse. I said my good-bye to Julian and told the paramedics to drive safely with my baby.

Julian leaving for Sickkids.

When I think back on everything, all I can feel is devastation. Our dreams and hopes for our two boys were crumbling before our eyes. We both knew deep down that Julian’s situation was bleak, 8 minutes flat line is not a good thing. We were clinging to the hope that we would receive a miracle. We hoped that while he was flat line for the 8 minutes he was still receiving oxygen while they were trying to resuscitate him, and hoped that he had not been without oxygen too long before he was born. When we first saw him he was looking at us and acting responsive – we just really hoped his brain was going to be ok. Because we both knew his survival depended on that as the main factor.

When he arrived at Sickkids we received positive news that while on transit to their hospital they were able to get his blood pressure up and keep it relatively stable. This was amazing news for us and our little guy. A few hours later we were able to talk to the head specialist on Julian’s case. She reported that by no means was he anywhere out of the woods, but things did look better. His blood pressure was up, he was breathing better than expected, and although still ventilated, he was breathing above the vent settings. She explained to us that cases, specific to Julians, need more time to determine the full extent of damage done. When a newborn loses oxygen at birth or prior to birth, they have a diving reflex. They protect their most vital organ, the brain, by directing all remaining oxygen and blood flow to that organ. If the brain is protected, brain damage can be avoided or if minimal brain damage occurs, often a newborn’s brain is able to compensate and find new ways to function. Our hope was that Julian’s brain had been protected. His other organs if damaged could heal with time and help, but if his brain had been compromised things would rapidly start to go downhill. At his admittance to Sickkids, his brain functions seemed ok. He was not experiencing any seizures and we still had hope, but only time would tell so we just had to wait it out. We decided my husband would go to Sickkids hospital to see Julian that evening. We were both very upset that he was alone there. So as soon as we could sort things out where we were, he was going to go downtown to be with our other little guy.

Sometime during the day (it may have been in the morning) we were told that Julian had suffered a full placental abruption. Another blog I follow has a good description of placental abruption so I’ll post the link here: http://brodysfrogblog.blogspot.ca/p/placental-abruption.html . I suffered a class 3 separation. (I am sure I will write about this again, there are so many things about the placental abruption that infuriate me, haunt me and make me question “why?”) Essentially, Julian bled out. By the time he was born he had lost more than 50% of his blood. As Julian’s tiny body continued to lose blood, inevitably his body no longer had enough blood circulating in his system to carry fresh nutrients to his cells and organs. His body began to shut down because his organs were starved of oxygen, and because there was no blood supply to carry away toxins that built up, his organs suffered further damage. Although he was alive, we were waiting still waiting to see the extent of damage done to his little body.

My parents brought our daughter to the hospital to see me in the evening on January 12^th. Throughout my pregnancy, although not yet 2 years old, she seemed to understand there were two babies growing inside of me. She would correct people when they asked about the baby in mommy’s belly and say “babies, there are 2 babies”. But when she arrived at the hospital I didn’t know what to tell her, would she remember or even understand? We decided to just take her in to see Jean-Luc in the NICU, and wait to tell her about Julian. It seemed as if she forgot there were 2 babies when she laid eyes on her little brother, so we left it at that for the moment. It was sad that I was unable to be with her when she saw her brother for the first time. I was still in my hospital room and hadn’t even seen him since the morning myself. The whole situation was not at all how I envisioned introducing my boys to my daughter.

Our daughter meeting Jean-Luc.

By the time my husband was able to get downtown to Julian, it was close to midnight. He was getting very upset that he couldn’t be there with Julian and was torn about leaving us, but he finally got to Sickkids to be with our other little boy. He spent time with him, touched him and talked to him. He took pictures to bring back to me and told our little guy to hold on and be strong. He also got an update on Julian’s condition. I recently found a note in my husband’s bedside table of the health update he brought back to me.

The note reads:

Glucose – down but better, may be due to liver, upped glucose

EEG – normal, no seizures, slightly depressed

Brain Monitoring – a few slight blips, may be nothing, given an anticonvulsant just in case

Heart – Normal, just weak (may be due to chest compressions), on an epi drip not close to max dose just to keep blood pressure up

Blood Pressure – Normal range

MRI – maybe tomorrow

Intubated – Likely unnecessary but comfortable so keeping it in for MRI, out in 48 hours

Other notes – pooping up a storm, very active and responsive, breast milk as early as Saturday, kidneys ok so far

My husband visiting Julian at Sickkids.

This information was very positive and I was able to get some sleep that night. I knew he wasn’t out of the woods, but we both thought things were improving and we were hopeful.

Meeting my little Julian and saying good-bye to follow.

Part 2: The Delivery of the Twins - A Living Nightmare

Once I was on the operating table I knew it would only be a short while until my boys were born. I was getting really uncomfortable from my contractions and I couldn’t wait to get my epidural so the pain would stop. The anesthesiologist seemed to be taking FOREVER, I don’t know if it was forever but it sure felt like it. I had had an epidural with my first delivery and the first time the anesthesiologist was really quick, this woman was just taking so long. I also remember there were alarms going off in the room, one of the baby warming beds was alarming and the nurses and doctors were joking about it. Again, everything in the room projected a pretty calm atmosphere, yes they were moving quickly, but there didn’t seem to be any indication that anything was going to be wrong or go wrong.

I remember drinking some kind of liquid for stomach acid, laying down, having the separation curtain raised, feeling something cold being spread on my abdomen and then the doctor cutting. I remember saying “where is my husband” and a nurse saying “her husband isn’t in here doctor”. The doctor replied that it was too late and he had already started. I could feel the doctor cutting and I told him I could feel it, he asked if I could feel pain and I couldn’t so he kept going. I felt layers of tissue being cut and separated and then pulling and pushing and then some pressure. While the doctor was working on taking baby A out I felt baby B kick me in the ribs.

At this point I was pretty scared to be laying cut open on a table all alone (it was nothing like caesarean sections on TV with the dad or support person by you). I didn’t even have a nurse holding my hand. I had arrived at the hospital scared because of the amount of blood there was when my water broke. They had detected two heart beats and seemed not to be overly rushing my section – so at this point I can say I honestly thought things were going to be ok. But they were not ok. The next moments changed my life in the most devastating way forever. Baby A was delivered at 5:18am and I listened for a cry – nothing. Nothing from my baby was followed by the dreadful words that will haunt me forever, “Baby A is flat line”. My first thoughts were ‘great my baby is dead, now what?’ At that point I was given something to pretty much numb my mind, I was there but at the same time I was not there. A brief glimpse of a paper white coloured baby flashed beside me, followed by a room full of chaos. All I could see was a sea of legs, people rushing over to the baby warmer and crowding around my baby. I kept hearing “push (amount) of epinephrine”, followed by “push another (amount) of epi”, there was no crying in the room just panic and chaos. During the chaos I know a code pink was called, someone was asking about the cord clamp and where it was or if it was there – I still don’t know what that means.

At 5:21am baby B was delivered, I didn’t know it because nothing was ever announced due to the chaos surrounding baby A. I was laying there just wondering what the hell had just happened and what was still happening. Everyone in the room was focused on something. Although I had physically not been forgotten as there was a doctor up to his elbows in my abdomen, I was definitely mentally and emotionally forgotten about. I knew I had been kicked by baby B while baby A was being delivered, so what about my other baby, was he alive or dead? I remember calling out “what is going on, can somebody please tell me what is happening?” It was the anesthesiologist who explained to me that baby A was delivered and was not breathing and his heart had stopped beating but they had his heart beating again and they were helping him breath. Then she told me that baby B was born and other then needing a little help breathing, he was doing fine. So both babies were alive – good. I don’t remember much from being told this news to arriving in recovery, to talking to a nurse and seeing my husband.

While I was in recovery, both babies were taken to the NICU. I hadn’t seen either of them. My husband came in to see me and we were told that baby A was born flat line. Was flat line for 8 minutes before they were able to get his heart beating again and that he was now in the NICU with a team of nurses. He was ventilated and he had lost more than 50% of his blood at birth. He needed a blood transfusion and they were waiting for special infant blood from Sickkids hospital. They were also waiting for a special team to transport him to Sickkids hospital. Because of the blood loss, they were having a very difficult time getting his blood pressure up and they were unable to keep it stable. I listened to the news, I knew what they were saying, and I knew it was bad, but he was alive and I didn’t know what to think. I honestly didn’t know if he would survive or die, but I was so happy to hear he was alive and that he was going to get the best care possible.

We were also told that baby B was doing fine, that he was on a c-pap machine – just in case he needed some help breathing. My husband was told he could go see them and I would be able to see them when I could move my feet and be moved out of recovery. I had also lost a lot of blood during the delivery and my body temperature had dropped. I remember shivering profusely, but willing my feet and legs to move so I could see my babies. It was torture laying in that bed, waiting to see my boys. Especially not knowing if one of them would survive or not, not knowing if I would ever get to see him alive. My husband went into see the boys and took the camera so he could take pictures and bring them back to me. While I was waiting, one nurse (the one who said she had detected two heartbeats when I arrived) came in, the look on her face made me feel like everything was NOT going to be ok, she couldn’t even make eye contact with me. Finally my husband came back. He looked horrible, like a truck had hit him. I asked him what was happening and he told me that Julian (baby A) was having a really hard time with his blood pressure and they were unable to wait for the infant blood, so they started the blood transfusion with regular blood. He showed me the pictures. Julian looked very pale in the pictures. He was ventilated and had bloodshot eyes. Jean-Luc (twin B), looked even scarier to me. The c-pap machine (which is really just air over the nostrils) was strapped on his head and just looked really scary.

About two hours after my c-section, I was able to be wheeled into the NICU to see the babies. They took me to see Julian first. I thought he was the “ok” baby, he looked prefect. I was told that he was in fact baby A, I couldn’t believe that my little guy, who looked so perfect could be struggling so hard to stay alive. I was able to touch him and talk to him. My bed made a loud noise and he startled to the noise and looked at me. I was so happy to see him respond to the noise, it meant his brain was functioning. I said my hellos and goodbyes and they promised to bring him to me in my room before he was taken to Sickkids.

My Julian - looking at mommy and showing me his beautiful eyes.

They then took me to see Jean-Luc, he was also perfect. He was crying and mucus was bubbling out. He was pink and squirming. He was perfect and warm. I was able to touch and stroke him. The nurses told me he was doing great and I was so happy that my little Jean-Luc was so strong and doing so well.

Jean-Luc meeting mommy.

I was then taken to my room in the postpartum ward.

I will post the first day in the hospital after the delivery of the twins in another post.