Well it seems my nephew is not one to wait…. He arrived yesterday afternoon. 9 weeks early. Good birth weight and very active. Was breathing on his own. CPAP and the works for the time being. Not sure if any apenea etc. Will know more today now that she had a bit of rest. All well be well. 3 weeks has to make the difference.
Just trying to remain calm. Not easy when you know too much….. Perils of having a prem.
My husband’s cousin brought home her baby on Thursday. He was a 28w 5d prem. His due date was June 27th. So today he is 37 weeks.
All weekend we have been asked have you seen the baby? When are you going? We are not. There has been a steady stream of people into that home since Thursday evening. In addition to the visits they planned to take him to an event in our town on Saturday, with several hundred people… Yes, my husband and I both have our flu and Tdap. So all necessary precautions have been taken.
However, he is a prem. He is to have limited access to visitors for the time being. Now because we are choosing to do as instructed by Neonatologist, and the NICU we are the jerks.
Yesterday, as we drove to the lake my husband stated “What did they think we were doing in the hospital for 3 weeks? Having a vacation?” How do you respond to that statement. Every part of it is truth and valid.
I informed some of the family that we would not be over so the message would filter through. When questioned why I stated “He is to have limited visits and we are choosing to comply with those wishes for his health and well-being. We will not be over anytime soon.”
We are doing our best to convey congrats and to protect our selves emotionally. Within all of this our own family cannot understand why it would be so difficult to go and visit a child that was born 5 days older than our own son and he was able to come home. We want what is best for their family and for their son. We have sent love, congrats and well wishes and continue to pray that all will be well.
But we must do so at a distance.
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.
My three-day weekend is coming to a close. I will admit I have not much of anything. Housework. No. Cooking. Not much. Watching Olympics and movies. Yes. Over the past couple of years I have changed quite a bit. I no longer have to be on the go and doing. I often stay home and just be. I need different things these days.
After our son passed away. We got the looks, the comments behind our back. They do not act the same. They do not call, they do not visit, what do they do?
Well….Most people do not understand that we are not the same people anymore. Do you still feel the same way about things in life as you did at 25? As you did a year ago? As you did last week? No, I am not the same person that I was on April 26, 2012. On April 26, 2012, I was a pregnant wife. On April 27, 2012, I was a wife, and a new mother to a 12 week premature infant son. My priorities changed. As does the priorities of all new parents.
I think people expect that since we do not have a child at home to feed and clothe and protect that poof we are still the same people we were on April 26, 2012.
On April 26th I had not spent 19 days living in a hospital after having an emergency C-section. Nineteen days praying for the life of my son. Nineteen days fighting and pleading with God to protect him and give him strength. Only to have to turn around on that nineteenth day to beg God to take him from this earth so that he no longer had to suffer. That he had fought as hard and as long as he could and I had already promised him that Mommy and Daddy would be ok as they had each other here and would always be here. On that day I had not rocked my son to sleep forever more.
I remember a number of years ago a close co-worker and friend was losing her husband to cancer. She had a 5-year-old son at home. I remember watching her as she lived each day. After her husband passed away, I remember telling her that she had done well. She was strong and to never doubt herself. I told her that I could never have done what you do today and have done thru his illness. I was not strong enough.
Sometime ago I had to re-evaluate that comment. In many ways I feel very week. Unable. But…. I am not weak. I never have been.
I am scared shitless of the future. You know that picture you have always had in your head of what old age looks like. I haven’t a sweet clue what mine looks like because I am too scared to look at it. My plan was never to have 10 children or even 5. That is just not who I am. I have three cousin’s that each have 4 children. They are all beautiful. I just never saw myself being able to do it all. So we decided that we would love to have 2 children if possible. And then infertility crept into our lives. When we were finally able to get pregnant with C, I prayed every day. Please help us. Help us have a healthy child. Help us thru this pregnancy. Just this one pregnancy.
I do not have a test to show it but recently I have had some problems. I am 99% sure that between Jan 22 and Feb 1 I miscarried our second child. All you ladies with infertility know what I am talking about. When you have infertility you have it all written down. You know the signs. You know.
So tonight I sit and look ahead at this week and this month and this year. I tell myself you will do this. You will defy the statistic. You will have a rainbow.
…..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.