I guarantee you will never hear a parent ever say “I am over it.”
I would like to start by saying yes there are bright points in each day. I do want to give the impression that I am sullen all the time. Although, many +++ times though out the day something will trigger a memory. I am blessed to have such memories. I realize as a mother that not all of us do. But within each of these memories is the sense of loss, the longing for what can never be.
Last evening, my husband and I had plans to go to the movies. We stopped at the store before hand to pickup some items as a storm was due for today. I am planning what cake I will make for us to celebrate our son’s birthday. I need a couple of items as well as an Easter Present for my husband. This brought us to the toy aisle. I am looking for a couple of cars and a piece of equipment to make a construction cake.. Also, I need something to finish up the Easter arrangement for his grave. As I am looking up and down the aisle, checking each shelf. Everything there becomes blurry. All I can see in front of me is the vision of what my son should look like. Blue or perhaps his eyes would have turned green like his father’s. Maybe they would still be like mine and change color with his mood. Feisty little munchkin terrorizing our pets and loving every minute of it. His hair was light brown but had tints of red like mine when I was a child. Perhaps now it would have been curly knots like his father’s used to be. Visions of him eating chocolate cake on his 2nd birthday. Opening presents and giggling. Saying Mommy. Now I am crying. There is another Mother and her son in the aisle. I have to get out. I turn, my husband is behind me blocking the aisle. I am like “Go NOW. I need to get out of here.” Fear has taken over.
We get to the car and I lose it. We sit in the parking lot as I break down. Many do not understand. This is our entire life. Our infertility, our son, losing our son, our future, Us. I say to my husband. “What do we do? What if this is it? Time is running out for us? What if that is the only child we are able to have? Are you going to be ok with me? Am I enough. Are we enough. Just he and I. What will we do with ourselves?” This is not the future I saw on our wedding day. This is not what I had planned for the love of my life. I realize that we have no control over the future and all we can do is just be the person and love our spouse needs. But deep down you feel that sense of failure, that sense of loss. How do you make it right for them? I know in my heart that he is my forever. I knew that the day I met him. On my wedding day, I was 19 minutes late walking down the aisle. I spent 10 of these minutes standing on the church steps holding my flowers, while my Matron of Honor held the train of my dress. I spent these 10 minutes crying. No these were not tears of sorrow. They were tears of joy, tears of fear. I was committing my love and my life to the love of my life. I was promising that from this very moment forward he was my number one. Not a job I take lightly. Not one that I wish to fail.
As his birthday draws closer, more and more memories flood in. Not that they are not always there in your mind and heart. But the dates and the times have more meaning when they are close and current.
I have not shared at lot of our experience in the hospital. There are lots of very happy and special moments. Yes, there are a lot of very sad and tragic ones as well.
This is a photo of the first time I fed my son. I was pumping breast milk. He was on TPN along with his feedings every 2 hours. I look somewhat pensive. It is all a terrifying yet happy experience. I worked as a nurse’s aid for a number of years and have done GI tube feedings. Let me tell you nothing prepares you for feeding your 1442 gram son for the first time. I have held many a bottle in my years NOTHING compares to the feeling in that photo. Absolutely nothing. That is this Mother’s version of breastfeeding my child.
Those are the blessed moments. The ones that you are most thankful for. Those are the moments you hold close to your heart as that is all that I have. 1 year, 10 months, 19 days, 22 hours and 13 minutes ago my family made its last memory together.
What a wonderful thing to hear from one of the people that we trust with our precious children’s lives. NICU Nurse’s are very special people. And being an NICU Mom, I would like to thank each and every one of you out there for all you do. There are no words to describe what your kind words, your care and your love mean to us and our families. You are a gift from God.
Two nights before our son passed away, I had what I guess you would describe as an epic melt down. I was border line hysteric. Well not really but I was completely overcome with fear. I had been discharged from my hospital room and was staying in a Parent room attached to the NICU. It has a single bed, and a night stand. Just enough room to walk around. My husband, who had not left us since driving me to the hospital in preterm labour, had to sleep on a pull out couch in the waiting room for the NICU. I knew what was coming. I knew what we were facing. I had been keeping my composure for my husband. I knew that if I lost it that he would lose it. That night I lost it.
When we came home from the hospital the evening our son passed away I was exhausted. It was the first time in 19 days that I was not going to be pumping or going to the NICU to check on him. I had slept a total of maybe 8 hours in 4 days. Yes, I would say that guess is about spot on. I no longer had a reason to be up in the night. I was still facing how I was going to get my milk to stop as well. I had absolutely no idea what I was going to do with myself. I should be still pregnant.
At this point exhaustion took over. The thoughts of meeting with a funeral director, our pastor, the florist, and picking out our cemetery plot was ever-present but yet I slept. As time went on, I slept here and there. It was as if my body was still programmed in Mommy mode and knew it should be getting up numerous times throughout the night. I would be up until 2 sometimes 4 am every day. Sleep until 7 or 8 at the latest any day. I was off work for my “maternity” leave. After returning to work I would often be up until all hours of the morning. But yet I was not really exhausted. I just needed to keep my mind busy.
My Doctor asked me about meds the last time I saw him before returning to work. He had wanted me to go on meds when C passed away. (I saw him 5 days later) I said no. That if it got to the point that I could not handle it I would be back. Please do not mistake this for me not agreeing with meds. That is absolutely not it. Make no mistake. If ever you need help, medication, or to talk to someone by all means seek out the help. You will not regret it. It was just at the time that I was still functioning. I am blubbering. Back to topic. During this conversation with my Doctor he said are you crying every day. I said yes. Well is that normal he said. NORMAL! What the hell kind of question is that. I looked at him and said `My son died. I would say that crying is pretty normal.“ I am sleeping (some) getting up every morning having a shower, putting on clothes and looking after our daily life.
I have found other things that have helped me. I have read no less than 300 books in the past 20 months. Nothing earth shattering. Drama, smut, the works. Something that I did not have to think much about but kept my brain occupied and entertained. Bahahaha I can hear a therapist now asking…now what do you think you are using this time reading to do…… Read…..
As I have said before in one of my posts, I saw a counsellor for a time after our son passed. It allowed me the freedom to agree with my inner voice (the same one that told the Doctor that I was quite normal because I cry) that I was well within the boundaries of what society considers normal.. Hahaha.. I think that Doctor would be scared to know that guess what I still do cry almost every day. I am an emotional person. I still cannot understand why some would think that having these normal emotional responses would warrant a second look . I cry at random TV shows, hearing people talk about pregnancy at work, driving by his grave. You name it.
I guess is it because society puts a time limit on grief. So who gave them the right to limit how I feel and what length of time. Not I. You see. (And I do not mean this in a negative way as any loss of a child is devastating) I did not just pee on a stick one day and find out I was pregnant and lala 2 weeks later delivered or miscarried. End of story. We spent 2 and a half years between waiting for OBGYN appointments, blood work and TTC to get pregnant with him. 28 weeks later I gave birth to him. 19 days later he passed away. He very well may be our only child. The only child my husband and I will ever hold. It encompasses our entire life.
I read somewhere how when you lose a spouse you loss your past and present. By this they meant you lose the one that you made your memories with, your experiences. When you lose a child you lose your future. There will be no memories made. All you see ahead of you is the lack of things you will be doing and or experiencing as a family, as a parent.
As his birthday approaches my periods of rest are more sporadic. Tomorrow is mid week. I have to be up in about 5 hours to get ready for work. Guess it is time to dust off the Kobo and load up some new books!
…..Here is the rest of the story. Or well I will back track a bit. As many of you know, any number of things can happen with the birth of a preemie. They can be born with brain bleeds, etc. C was born, infection free, and with no bleeds. All of his blood and skin samples came back ok and his ultrasound, that was completed within hours of his birth, was clear…
The day we found out he was sick….
I had gone into the NICU with milk at 5 am. I went to sit and visit with him for a while. Preemies very commonly have apnea. In less than 2 minutes he had apnea 5 times. I asked what was going on. They said they were talking about intubation him but were waiting on some tests. I said absolutely not. I want it done now. He was too tired to wait one minute longer.
My husband and I went back to my hospital room and waited, as the Doctor asked, while they intubated him and ran more tests. At 9:15 am, the Doctor finally came to speak to us. She said that it could be Ecoli or Staph. It was very normal to pickup either of these during labour and birth. The following day we found out he had a heart murmur, which is very normal in preemies. More x-ray were ordered and another ultrasound……several hours later the original cultures came back and we found out he has Serratia. To be honest the best thing at that point was the ignorance factor as A) we had never even heard of it and B) had no idea, whatsoever, what this could possibly do. The answer to this question is far worse than anyone can imagine.
Warning… Things get MUCH worse from here. I will just briefly share what happened. The details are far to many. Truthfully, having lived them they are much more than I would wish to burden someone with.
The following day as I was sitting at his bedside. The nurses dry-tapped him and 20 minutes later we noticed blood in his intubation tube. They put the peap up and were able to stop the bleeding. He largely had a good and quiet morning.. Later that afternoon. He had a GM seizure. He was extremely agitated. They gave him a shot of medication hoping it would calm him down. It had the reverse effect. No chest movement so they had to break peap and bag him. They tried a second med a short time later. They had to break suction which caused the pulmonary bleed to start again and they had to bag him a second time. The Doctor sat at his bedside for 36 hours. She is a wonderful woman.
The following day another Doctor called us in, to speak with us. They ordered a lumbar puncture and another ultrasound. Both came back positive. The Serratia had eaten his platelet count down so low that he could not fight off Meningitis which caused the GM seizure and a grade 2 brain bleed. At this point we were told we were facing developmental problems. We informed her that we are a family and he is our son. Regardless.
Over the course of the next 9 days our son fought for his life. Bags and bags of plasma and platelets were given, meds upon meds. He would get a transfusion and his platelets would go up to 18 and then 3-4 hours later they would be back to 2 and 6 and 8. Blood work every 4 hours, 3 IV pumps, 6 lines T into 2 shunts. At points the shunts were in his right arm, leg, left arm, head. He fought. He is my son and he fought to live. Femeral stabs to check liver function, Kidneys shutting down. He gained over 2 lbs of fluid during this time as it went into the third space and the meds would not work to reverse.
Nine days later, as I rocked him, and he and his father held hands, he took his last breath. Our son was gone.
2 hours later we drove home, alone. Never in my life did I dream that I would give birth to my most precious gift and not be the one driving him home. Never, did I think that 3 weeks after he was born would I be standing at his grave listening to my husband read him his last bedtime story. Never did I think that I would be waiting for his headstone to be placed at his grave before the day he was due.
I am most thankful for each and every minute of the 19 days of my son’s life and the 28 weeks that I carried him. He is the best parts of my husband and I and was born out of love. He was most wanted. He is the single greatest gift we will ever know. We are the blessed ones, as we are his Mommy and Daddy.
This is how I became a mother with empty arms.
In my last post I talked about defining moments and events in life. All of us have had many.
First kiss, first love, graduation, the day I met my true love, the proposal, our wedding day and November 15, 2011. The day I got the BFP! Each of these events and many many more have shaped and changed my life in many ways.
In my very humble opinion the most defining moment of my life was becoming a mother. Hearing his heartbeat for the first time. First ultrasound. Hearing his most beautiful cry at 12:03 pm on April 27, 2012. He was here! 12 weeks early. Delivered by emergency C-section as he was breech. Feisty and weighing in at 1442 grams. 39 cms long. The most beautiful baby every born. (I know this as I am his mother.) Hahaha…
We settled in for a stay in the NICU. Most likely 8-12 weeks. He was doing well. I was pumping milk, he was active, eating well, thriving and gaining weight. My husband was living at the hospital with us. Our family of 3 was together and doing what we could. Breakfast in the morning, spending the day by his bedside, baths, feedings, diaper changes, and bedtime stories.
Nine days later something was wrong. Bloodwork was done, meds were started, shaved his hair for IV’s. He was sick. One of the scariest things any parent can hear.
Sending out good thoughts for the weekend!