Life is Stupidly Unfair: A Mom's Journey of Survival

When we first got the CDH diagnosis, I was connected with a girl who was also pregnant with a CDH baby.  She added me to several online groups on Facebook.  When I first posted, I got an influx of messages from both parents of survivors and parents of angel babies.  I'll be the first to say, I didn't want to listen to the people with angel babies.  I was thinking "No way this is going to be the ending to my story."  I couldn't stand to see the people post in these groups about losing their baby.  It made me so sad and I didn't want to deal with those feelings.  I was certain my girl was strong and would survive. Now that I am on the other side of things, I see things from a totally new perspective.  After we lost her, I left all the groups because it made me too sad to see the stories of all the survivors.  That should've been my baby that I was posting about.  Posting all of her hospital milestones and then posting finally that we get to go home. 

After everything happened, I kept looking for something I could do to help others who had to face what I did.  Those who struggled (and continue to struggle) to get pregnant, those that have faced a miscarriage, those that have faced a difficult and stressful pregnancy, and those that have suffered the devastating loss of their child late in pregnancy or after the child was born. I had a friend suggest a doula program to me.  It focuses on both helping with happy "normal" births and on helping people through bereavement and loss.  I was immediately drawn to it and felt called to do it.  So I started my training and in a few weeks, will be certified!  I am super excited about this.  This way I can help people through lots of different issues. Several people have asked if I can emotionally handle the work of a doula.  Some of the material has been triggering, but I also think it's helpful.  It forces me to work through some of the things I try to hold back and repr

One of the strongest feelings I have throughout all this is a need and a want to get pregnant again.  Nothing will ever replace her, obviously, I want my rainbow baby.  The first frustration that comes along with this is that doctors tell you that you have to wait a certain amount of time before trying again.  To let your body heal.  What annoys me is that doctors can't even seem to agree on the right amount of time to wait.  I saw ranges from 3-18 months.  Some of you also know that I have PCOS, which is polycystic ovarian syndrome.  It means that I have a hormone imbalance and don't have regular cycles.  Which obviously makes it hard to get pregnant.  As I get older, it takes a lot more effort for me to get pregnant.  With N, I did acupuncture, which regulated my cycles and I was able to get pregnant and have an easy pregnancy and a healthy baby.  With Jasmine, it took some failed fertility treatments along with acupuncture and diet changes. This time around, I am st

Do you ever have one of those mornings where just everything seems to go wrong?  So much so that it starts to just get laughable.  I have had a lot of those lately!  No matter what, I just can't seem to get to work on time and it's so frustrating.  I have to leave in the morning, drop N off at preschool and then drive to work.  I live and work in the same city, yet the amount of traffic we have is ridiculous.  I leave on time and then there is an accident or way more traffic than normal.  Or N doesn't want to cooperate, so I leave late, which just makes me late to work.  I give up on that!  I can't wait for school to end so traffic will at least be slightly better.  Or for them to at least finish construction so that I can take the road I used to take! I was so proud of myself because I put some overnight oats in the crock pot last night.  I was making enough for it to be my breakfast for the next few days.  Instead, they burned and weren't edible.  Ok...wi

I have found that one of the strongest emotions I have had to deal with lately is anger.  I am angry at a lot of things.  I am angry at the doctors who abandoned me (in the end, every single one of them did and that really sucks).  The one who wrote off my daughter's chance to survive the moment of the CDH diagnosis, the one who told me well you can give birth to her now and spend a few minutes with her or you can wait and let her be stillborn, and the one who I had been counting on to help me and then wouldn't at the end.  I've mentioned it before, but it really sucks that doctors don't want to help you when they hear the word trisomy.  I wasn't asking for a miracle, I was asking for them to just TRY.  And in the end, no one would and we ran out of time.  The only one I did not feel abandoned by was my OB and he was the one person who couldn't really help in this situation.  Personally, I never want to see or speak with any of those doctors even again.  Ne

Two stupid little words that seem to always pop up in my head.  In my head and my heart, I know that I did everything I possibly could for her.  I was willing to relocate or go anywhere I needed to get her treatment.  I was willing to spend whatever money I needed to for her.  To even have to live apart from my husband for a while just to save her.  In the end, none of that mattered because she just had too much that she couldn't overcome. Even though I know I did everything I could, I still always ask myself that question.  What if the doctor in Florida hadn't taken three days to call me back and I could've gone to Houston sooner?  What if I had just gone to Houston in the first place?  What if I had contacted multiple doctors in the beginning?  What if someone had been willing to drain that fluid in her chest?  Would any of that have changed things?  Probably not, but you still can't help but wonder about it.  And sometimes it feels like I didn't do enoug

Mother's Day is bittersweet for me this year.  On the one hand, I have my beautiful son here and want to celebrate being his mother.  On the other hand, my other child is one I can't be with.  And for that reason, I also half dread Mother's Day.  It's hard to see all the posts of people with their multiple healthy children who have never had to struggle to get pregnant, have a sick child, or lose a child.  I feel like I am in just a weird place right now and it's hard to put into words. I know people who are still struggling to have their first child and I don't want to come across as at all ungrateful for my son.  I know people who have also lost their mother and know they struggle on this day as well.  I know Mother's Day is super hard for all of these people.  A day that seems so simple brings up such complicated feelings for so many people.  I have recently met many people that have gone through the loss of a child at various stages.  People who

I went back to work a week after we lost her.  No one was pressuring me to come back, but I knew I needed to for my sanity.  (Plus, I did feel a little bad that all of this happened right in the heart of tax season!  My boss and coworkers were all super understanding though!) I couldn't bear to sit at home anymore just crying all day.  I was going to be sad regardless, so why not at least go be productive?  My mom and I talk about how neither of us can sit around too long because we get bored (thanks ADD!) :-)  I simply got tired of being sad.  I know that probably sounds weird.  I mean, you can't just decide one day that you won't be sad about losing your child.  But I knew that I needed to get back to my new normal as quickly as possible for my own sake.  I know myself and that is what I knew was best for me personally.  Sometimes I do wonder if I should've taken more time off, but I am glad I didn't.  I was able to throw myself back into work during our bus

Today is Bereaved Mother's Day.  It is to give those women who have lost a child an outlet to be able to acknowledge the child they lost.  For all of those who have miscarried, given birth to a child who did not survive, or had a child they lost later on.  It's never easy to lose a child (even if you are not as far along yet or if you made it the whole way through, it hurts just the same).  This time of year is especially hard with Mother's Day coming next weekend.  For those who lost their child, Mother's Day is a hard holiday.  I am so grateful to have my son, but I still am sad about next weekend.  I should be celebrating with my daughter too.  I am still her mother and she is still my daughter, even if I don'[t get to physically be with her. So please be sensitive on Mother's Day to those who are hurting.  There are more people than you know that have had a loss like this. 

Before I went through this significant loss, I didn't know of many people who had a loss like this.  (Turns out I knew more than I thought as some reached out to me after it happened).  I was definitely one of those people who didn't know what to say to someone who had gone through this.  I mean, really, what can you say?  You know that nothing you say will change what happened or make them feel any less pain.  But what I learned is that the people who said nothing at all hurt me worse.  People who I would expect to be there for me and just said nothing.  People who were absent during the rough parts of the pregnancy and absent when we lost her.  People who I expected would be there.  You may think that saying nothing would go unnoticed, but it didn't.  I know a lot of people just don't know what to say, so they choose to say nothing.  But if you know someone who has gone through this, I strongly encourage you to reach out to them.  Just to say, "I'm thin

One of the very worst things about losing my daughter was the fact that I still had to go through childbirth and recovery from childbirth.  I had to go through childbirth knowing exactly what the end result was going to be. Since my body was nowhere near ready to give birth, they had to give me cytotec to help induce labor.  Thankfully, I had some understanding nurses and they at least let me eat a meal before all this started.  Once that process got things started, I had to have a few doses of these medicine until my water finally broke.  I opted for the epidural, but was still hurting some.  Overall, the labor and delivery was fairly "easy" and straightforward physically.  Emotionally was obviously a completely different story.  My most intense moment of grief was when they told me to make the final push and I felt a pop and there she was.  I didn't want to push.  I told my husband "I don't want to do this." By the way, every single nurse and sta

As I mentioned before, our daughter Jasmine had been diagnosed at our 12 week ultrasound with CDH (congenital diaphragmatic hernia).  I had never even heard of this before she was diagnosed (even though I later found out there is just as many cases of this per year as cystic fibrosis and spina bifida).  Crazy that it was the only one of the three I hadn't ever heard of.  The cause of CDH is not really known as it seems to sometimes have a genetic component and sometimes it is random.  We were told that they have found links to CDH on every single one of the chromosomes, so they can't even narrow down exactly what causes it.  It is one of those things that many people are told has a 50% survival rate at best and prospects seem bleak.  But there are several specialist locations around the country that focus on CDH and have drastically improved those survival rates. The other issue we were dealing with was mosaic trisomy 15.  This is extremely rare, so there was not a lot

When you first find out you are pregnant, probably one of the first things you figure out is your due date.  The general date that you will meet your little boy or girl and have a new life to take care of.  It is an exciting time.  You make all your plans, pick a name, decorate a room, and wait to meet your new child.   But what about those of us who aren't able to sustain the pregnancy for whatever reason?  Maybe someone has an early miscarriage or maybe they lose the baby later on.  Unfortunately, I have experienced both.  And then the due date becomes a day of extreme sadness.  Of lost hopes and dreams that you had imagined and laid out for your child. Today is my due date.  The day my daughter Jasmine was due.  It was never a stress-free pregnancy.  She was diagnosed with CDH (congenital diaphragmatic hernia) at my 12 week ultrasound.  This meant she had a hole in her diaphragm, which allowed the other organs to move up into her chest and crowd her lungs.  She would