Life missing my forever baby Julian
This is a blog to voice my feelings and thoughts surrounding the death of my precious baby Julian. My twin pregnancy ended tragically with a catastrophic placental abruption. At 35 weeks my two sweet babies were born, and 36 hours later, one of my twin boys died in my arms. Now I have to figure out how life will continue with our surviving twin son and our 2 year old daughter.
Friday, May 18, 2012
Life
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.
Saturday, May 5, 2012
Mother's Day
Sunday, April 29, 2012
I know...but then I remember...
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.
Thursday, April 19, 2012
Tomorrow...
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!
Wednesday, April 18, 2012
Part 3: My First Day as a Mother of 3
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 12th. 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.
Monday, April 16, 2012
Part 2: The Delivery of the Twins - A Living Nightmare
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.
Friday, April 13, 2012
Once again another Friday the 13th
At first I counted by how many days it had been since Julian died, then it was how many weeks, which has turned into months. I think about him everyday, but the last few weeks I have been paying less attention the the dates since it happened. Just as I have been loosing track of time with how many weeks/months old his brother is (it is a bit sad - until now every Thursday has marked another week older for Jean-Luc and then I remember that the next day means it will also be another week since his brother, my other sweet baby has died).
Today kind of hit me hard unexpectedly. Today is the last day I will count in weeks from the birth and death, from now on I'll remember in months, until the two year mark, then it will be remembered in years. Today also happens to be another Friday the 13th, not that I believe in any superstitions in regards to the date - but it still sucks. It sucks that my baby died on a Friday the 13th and that every Friday the 13th will be another reminder of this.
So yesterday my little Jean-Luc turned 3 months old - where does the time go? He is such a good little man.
At three months he is:
- smiling
- ohhhing and awwhhhing
- still breast feeding exclusively
- sleeping from 12am-6:30'ish pretty consistently
- batting at toys
- napping like a champ
- hating tummy time (like his sister did)
Jean-Luc you are an amazing, happy and joyful baby. We love you so much, you and your sister bring a smile to us multiple times a day, every single day. I have loved every night feed, every poopie diaper and even the time you spit up in my mouth. We are looking forward to every moment with you.
Julian, it has been three months today since you died. We miss you everyday and think of you often. I tell you sister and your brother about you, they have no idea what I am talking about right now, but one day they will and they will know you were here and you were loved. You brought me happiness and I loved every minute I got to carry and then hold you. Some days I am still very sad that I can't have you here with me, you showed me how precious life is. And your sister and brother continue to remind me of how special life is everyday, and how we all need to live our lives to the fullest and enjoy our time together.
We love you sweet boy.
Love your Mommy
