The New Baby

December 12, 2010 at 5:27 am 2 comments

It has been 3 months since I’ve posted, but not because I’ve forgotten or have been too busy to think of my children. In fact it’s because I have been so busy thinking and hurting for my children that I haven’t been able to write. Grief does funny things to the brain and causes thought processes not to work too well or to even be organized. I have been basically having enough energy and skill to get myself out of bed and to just get myself through the day without falling apart.

In the time since my last post, Jacob has had many visits to BC Children’s Hospital having extensive testing done to see why he suffers cyanosis. After many days at the hospital, we are still left with unanswered questions, but relief that it is nothing life threatening. His heart is fine. His lungs are fine. They basically attribute this to his autonomic nervous system. I am not sure exactly what this means. I am hoping that at call back they will be able to tell us more. But what I do know is, is that he is safe and can have anaesthetic and that’s all I can ask for right now. He still has cyanotic episodes, but he’s not in danger and that is an answer to my prayers.

Also in this time, I found out I was pregnant. All of us at home here have been so happy, although our happiness has had an underlying anxiety that is totally expected. We tried to focus on the positives. We got ourselves a Doppler so that I and the kids can have relief when we hear that beautiful heartbeat. We all thanked God. We believe that Matthew and Simon have been a thorn in God’s side in asking to send us another child. Although this joy is much needed in our family, I have still struggled with much depression as well. I belong to a world where children die. I know I have no control over it, but my worries are there. Every day I over worry about my living children and have fears about this one in my womb. My counsellor told me not to be pessimistic but to be joyous right now with the good news. But in my world, I can’t help but doubt. She has told me the same things during my pregnancy with Simon and that things would be good. But of course, that did not happen. So until I reached 19 weeks, and felt this child move within me, I found it difficult to be optimistic. After this point, I did allow myself to feel optimistic. Along with optimism came guilt for feeling such happiness when I also hurt and miss my boys. But I am a determined person to once again find happiness.

Unfortunately, my optimism has been short lived. At 20 weeks, we went to the ultrasound to see our little baby suck its fingers, kick and swim around. The kids were laughing with joy and I was in tears at seeing such a perfect, healthy little baby with a heartbeat and everything. But because of Matthew and Simon, the doctors wanted to be extra vigilant with this one to help us cope with our anxieties. They are trying to give us the best care. When during the ultrasound and the technician couldn’t get the baby in the right position to get a clear look at the heart, she asked me to come back later and see if baby has moved in a better position. When the doctor called back and said my ultrasound would be at BC Women’s Hospital in 4 days, I got nervous. They told me nothing so my brain filled in the blanks. And let me tell you that my brain can think of such horrendous things.

The ultrasound took a long time in Vancouver. And how could I possibly stay optimistic when cardiologists, geneticists and perinatologists hovered over the ultrasound technician asking her to go over the same area over and over. We were informed that my perfect little baby has a heart defect known as Transposition of the Great Arteries – Type D. And as long as baby is inside me, baby is perfectly safe. I give baby clean blood. But after birth I am to expect a blue baby with breathing difficulties (not again!). Within baby’s first few hours of life, it will receive a Septostomy to help some clean blood mix in with the dirty blood so baby has a fighting chance. Within baby’s first week of life, it will receive open heart surgery to repair its condition. The arteries in the heart are backwards. They will switch these arteries and close off the hole they made in the septostomy. It will take about 8 hours of surgery. Baby will then spend about a week in the cardiac NICU to heal and watch for problems and infection. The survival is about 90 – 95%. Those odds sound so good, but when you’ve gambled such as we have and lost with worse odds (0.1% for Matthew), it’s hard not be extremely scared.

I am trying to focus on one day at a time. I know that I have to plan to move to Vancouver for 2 months. That in it will be very stressful. I want to bring all my kids because I want things to be as normal as possible for them given the circumstances. They have been traumatized enough in the last almost 2 years that I can’t make it worse by leaving them for so long. I would also like them to meet their new baby before surgery, just in case. Also, I need to keep things normal as long as I can as I cannot have time alone to just think. I need lots of distraction and keeping busy to keep myself from falling apart. That’s how I’ve coped since Matthew died. I also know, that with all these concerns and a child with health problems is going to force me to put my grieving of Matthew and Simon on hold, and I already feel very guilty about that. How can I not have time to miss my boys? Of course I will miss them and hurt for them, but I know I will be too busy dealing with this child and upcoming serious medical issues for awhile that I will not be able to focus so much time to them. That thought just pains me. But reality right now is that I have to do it. Will they know I still love them and miss them?

Amery has come across some people who believe that even though I’ve been clean of my antidepressants for a year that they could be responsible. That they may have affected my eggs. That is something we could never prove and I hate to think that these drugs are still causing me problems. Could it be possible then, that any future children could still be affected? We are told that TGA is a random thing and we could not have done anything to prevent it. To think my eggs have been damaged would make me afraid to have any more children. I don’t know if I’m finished yet. But to have worries like this with every pregnancy is an overwhelming thought. I thought I was in the clear with this one since the pregnancy has been so easy physically on me when after starting my meds, they got dramatically worse every time. Is my life to continue on in stress and anxiety with my children and that this is what I have to look forward to for the rest of my life? I feel like I’ve lived my life as well as I could have. I have always followed God and prayed and kept my faith. That maybe he’s decided to test me. But these so-called tests feel more like punishment. Why? I see many women make bad choices that continue during pregnancy and motherhood and produce babies with no problems. Why do they get healthy children? Why do they go through life without real worries? Will there be great rewards waiting for me at the end? That’s all I have right now to go on. Hope. Without it, I am finished.

Here I am today, balancing on the edge of sanity. Wondering what I did so offensive to deserve such heartache. Hanging on to some minute level of hope that all this in the end will be worth it. Trying to focus on all the good my children bring me and keep trucking forward into the unknown bliss of the future. With all my efforts clinging on to getting through each day moment by moment, until the day God calls me home.

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Entry filed under: Congenital Heart Defect, Effexor, Infant Death, Infant loss, mothers act, Patent Ductus Arteriosis, Pregnacy, psychiatry, SSRI, Transposition of the Great Arteries, Uncategorized.

18 Months Happy 2nd Birthday!

2 Comments Add your own

  • 1. Erica  |  April 2, 2011 at 5:50 pm

    I just wanted to tell you that I had a baby, a little girl, who had TGA. Although I had the prenatal ultrasounds you had it went undiagnosed. So she was born and we didn’t know there was a problem. This puts her at even greater risk because they didn’t implement the life saving interventions right away. However, she had the septostomy and the open heart surgery 4 days later and she is now 3 1/2 months old and thriving. Stay positive. We will be praying for your family.

    Reply
  • 2. schultzc  |  April 3, 2011 at 5:15 pm

    Thank you. He was born April 1. He is beautiful. He looks just like his big brother Matthew, only blonde. He was long on coming as it seemed he didn’t want to be born that day or he was doing it as an April fools joke on me. But his arrival was met with great care.
    He had his septostomy done in the morning and his 02 levels are in the mid to high nineties. So nice. But when they did the septostomy they found an atrial valve problem. This could cause some problems as he grows. Right now I think he’s okay, but have yet to speak with the surgeon. Just trying to get through each day and pray he will be okay.

    Reply

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