Our family

Our family

Thursday, September 27, 2012

Good days and bad....

I definitely have good days and bad days. The feelings have been overwhelming at times, but then there are times that I'm able to totally put reality out of my mind and just live in the moment. Reality tends to come crashing back like a sledge hammer though. For example, happily painting my nails tonight and enjoying some adult time...it occurs to me that I shouldn't be doing any of this. I should be busy with my baby..... Sometimes it's like it hits me, that this really happened to US... The pain in that moment is so powerful that it takes my breath away and I have to think about anything else. It's like I can only deal with the grief in small increments or I would be totally overcome.
Sometimes I've even felt relieved that the waiting is over, the waiting and worrying and wondering how things would go for Max and if he would suffer very much. Then I feel guilty for being relieved. I know it is probably normal to feel this way considering our circumstances, but I would also give anything to still be pregnant. This was all over too soon for me, I wasn't ready to let go of him. I remember telling the doctors that if there was anything they could do to help him, I would stay pregnant for another year if that's what it took. I wish I could have. I would give anything to have him with me for just one more moment.

Tuesday, September 25, 2012

The beginning and the end

I'm a little new at this whole thing, but I feel a need to put this out there somewhere. I guess a diary just won't do at this point. This blog is about my story with my baby Max. I'll start by introducing myself, I'm 30 years old and married to my wonderful husband, Andrew for four years now. I had been working as a hairstylist until we had our first child, Oliver who is two now. Since he was born I've worked part time off and on. Around Christmas last year we decided to start trying again, thinking it would take some time as it had with our first. When we found out that we were expecting shortly after the New Year, we were a little shocked but happily so.
Things were going really well with the pregnancy and we were excited to find out the baby's sex at our 20 week ultrasound. I was scheduled for a special ultrasound to determine if we would have any complications with blood pressure, as I had in my first pregnancy. I'll never forget that morning, I think back about how naive I was then, what I wouldn't give to go back to those days when the world was rosy and nothing could go wrong. I felt like we were in the clear, passed those first tenuous weeks of pregnancy. What could possibly go wrong now? I was just so excited to see if we were having a girl or a boy.... I'm sure I had drunk three gallons of water and the technician got started and asked me to drink more. She was scanning and scanning and I couldn't see the screen. After about 45 minutes she left the room to find the doctor and said she'd let the resident show us our baby while we waited. I couldn't take it anymore and had to go to the bathroom. She said, "Don't let too much out". We waited a bit more until the doctor, resident and technician came back in. Everyone seemed somber, my husband told me later that he had seen the technician measuring and marking things on the screen with question marks....he said he was starting to worry at that point. The doctor decided she would have a look herself. We were both pretty sure something was really wrong by this point, but I knew the baby was still alive - I could feel him moving all the time, he really didn't like all this pressing on my belly. Finally the doctor told us, they suspected a congenital diaphragmatic hernia. We both just sat there, then she said they offered termination with this kind of diagnosis or palliative care.... I started crying, I didn't understand what the diagnosis was but if they offered termination it had to be really bad. This was part of the conversation that I revisited daily over the next few months, I kept hearing her say they offered termination..... Finally I asked what else we could do and she started talking about an experimental surgery offered in bigger centers. We clung to this little bit of hope for the next few weeks and tried to figure out how we were going to manage this trip and all of it's expenses.
In all of the confusion that morning I finally remembered to ask if they could determine the sex of the baby, but he wasn't cooperating. She reassured me that they would certainly find it out with the amnio, which we had to have done to be certain that there were no chromosomal anomalies so he would qualify for the surgery. Then she sterilized my belly and pulled out a huge needle, I don't even remember if it hurt....I'm sure I was in shock, people would ask me later if it hurt...Not as much as learning that your baby has a very small chance of survival.
I saw the doctor a week or so later and the preliminary results were back from the amnio, he was a boy and it seemed that other than this diaphragmatic hernia he was perfect. She decided to do another ultrasound just to see if anything had changed. (Luckily for us our OB was also specialized it fetal and maternal medicine, she was my gynecologist since before my first child and we are very glad we had her on this journey.) She confirmed the diagnosis, which was a right sided diaphragmatic hernia. So this meant that Max's diaphragm hadn't completely developed for some reason and had allowed his liver and part of his bowels to move up into the chest cavity, crowding his lungs ability to grow. The right sided are the worst because the liver is on that side and is so large, left sided hernias are much less severe. Max's lungs were very badly compromised. The surgery was in utero, the doctors would try to place a balloon in the baby's trachea to block the fluid that normally develops in the lungs from escaping and hopefully cause them to grow due to the pressure.
I researched this and found a wonderful local foundation that would fund our trip to Toronto to meet a doctor who could do this. From all of my research I learned that this was very risky and most likely would either prolong his suffering or cut his life short due to complications. Finally we had our appointments booked and our flights. My mom came with me and we spent a week meeting every doctor who would be involved in his treatment if we chose to go ahead with it. They also repeated all of the tests I had had done at home, an MRI, more ultrasounds and an ultrasound to perform a cardiac echo. We had also learned that we would have to relocate there for the duration of my pregnancy and his treatment afterwards. All of the doctors were fantastic, some were more frank with me than others. A few basically told me flat out to respect his life and just go home and allow him to go peacefully while others encouraged the surgery. I finally asked the one doctor why I should go ahead and let them do all of these things to my baby when every baby they had tried to help this year so far had died and none had had as severe a hernia as Max? His response was that we would be doing it for science, for medical advancement. That was my deciding factor, I wouldn't put our baby or our family through all of this just to most likely shorten his time with us and certainly make it more uncomfortable if not painful. This was mid June, so we came home and decided to make the best of the rest of our summer and cherish every minute we had with our precious baby knowing that his birth would mean his death.
How is this fair? Who has to go through things like this? I've learned that there are all too many of us. People would say to me, "I don't know how you do it? You're so strong to go through all of this." I always thought and sometimes told people, "I'm not the one who's going to die." It would make me so angry, the sympathy people would offer me, what about my baby and the fact that he didn't have a chance at life....?
I was so worried that he wouldn't suffer or struggle, that if nothing else I could offer him a peaceful end. 
That became my new focus, trying to plan a quiet and peaceful birth with a palliative care plan for my baby. We met some more fantastic doctors here at home who helped us to arrange this.
As the summer went on I developed polyhydramnio, an excessive amount of amniotic fluid which is common with congenital birth defects. The hernia and relocation of internal organs were hindering Max's ability to swallow the fluid, so it would just continue to build up. The doctor had said that she would set induction for 38 weeks because of this, we all agreed that having a scheduled date would make it easier to have everyone that we wanted there. We had planned to have a NICU team to assess him at birth and confirm diagnosis and determine if there was anything they could do for him, as well as a back up palliative care plan. Our OB wanted to be there as well. I had very mixed feelings about the induction, I knew that his birth would mean his death and I really didn't want to be the one to decide when that should happen. I wanted to let him make his appearance in his own time.
I was set to be induced August 27th, but as it turned out my water broke the morning of August 22nd. There were no contractions though and I was only 1cm dilated, so the doctor decided we could go home for the day and see if labor would start on it's own. The next morning they started my induction, still nothing happened until late that night. By then I had started running a fever and they were worried that it was because I had been ruptured for almost two days. So as labor began I was started on antibiotics, but things were finally progressing. I felt a little better that we hadn't been induced just because the doctors decided to, but because we had to at that point. However at the same time, I felt cheated that I was only 37 weeks and 3 days. I could have been pregnant for weeks more, he could have had so much more time with us. I know logically that things happened because of the excess fluid, there just wasn't anymore room in there....but then I can blame myself for that too. I had often said that I would have stayed pregnant with him forever, until they could come up with something to save him....
Maxwell Stephan Nichols was born at 8:11 am August 24th, 2012. His heart rate at birth was only 60 bpm and he didn't cry at all. The doctors assessed him and tried to find an oxygen saturation reading, but couldn't get one at all. They decided to wrap him up and let us hold him. Andrew and I were very concerned that he be peaceful and that if he was suffering he not be passed from person to person. We had decided to be alone during this time, the only person we invited in was our priest who had been waiting in the hospital chapel and praying for us. He came in and baptized and confirmed Max and prayed with us for a bit. Then we took turns holding him and loving him until he went to be with God. He was so beautiful and perfect in every way. I knew our time with him would be short and I wanted to remember every second, but now I can hardly bear to think about it. We had been told that he likely wouldn't live more than ten minutes, but we were blessed to have him with us for almost an hour.
After the nurse came in and confirmed that his heart had stopped she helped to get a bath ready for him and we washed him and put his lotion on and dressed him in his special sleeper we had bought. Our friend had arrived to take some pictures and we are so glad we decided to do that, they are beautiful memories that we will always cherish. My parents arrived next with Oliver and we even managed to catch a few great pictures of him holding his brother. All of the aunties and uncles and cousins visited next. We were moved back to the antepartum ward, away from the crying babies, I guess. Andrew and I held Max and talked a bit more and then we decided to have a nap, the nurse had brought us a beautiful white bassinet and we set Max in there. We slept for a little while, but I woke up and wanted to hold him some more. When my girlfriends started to show up Andrew decided he would go home and give my parents a chance to come back. I think he also wanted to see Oliver and try to give him some sense of  'normal'. My girlfriends spent the afternoon and into the evening with me and then my parents came too. As it got later, I decided that I didn't want to keep him with me overnight. I knew that I wouldn't sleep with him there, I'd just want to hold him and look at him all night. Also, we had decided that we wanted to have a viewing and I wanted him to look as natural as possible for that. There was some family that had been out of town and hadn't made it up to the hospital to see him as well as both of our grandmas. Also, I was so glad that I'd have another chance to see him.
After my friends left, my parents stayed with me. Suddenly the realization that I was about to send my baby down to the morgue had hit me. This was probably the hardest thing I've ever done in my life. I unwrapped him and checked what?? I don't know. I wrapped him back up and snuggled him some more. My dad had said that he would carry him down, the nurse made us cover his head and led them out of the room. He was back really quickly and said that he only got to the elevator, she had to take him from there by herself and then he broke down and sobbed too.
My parents stayed with me until the nurse came in and gave me something to sleep. I was sure I wouldn't sleep at all, but I did for a few hours. I remember waking up and standing in front of the window wondering how the world could go on. Didn't they know that my baby was gone?