Sunday, October 26, 2014

It's D Time...Again..

I have had a few people ask me what D Day is. In the baby loss
community it is the day you are told about the fatal diagnosis, so it is short for diagnosis day. For me though there is more than just one day. For me it is a time period of over a month, with the actual D Day being near the end of that month. I call I D Time instead of D Day.

For me the Anniversary of D-Day and the weeks before and after are harder on me than her birth/death day. For me her birthday is about celebrating her life, while of course there is a bit of sadness, it is more about being happy and celebrating the time we had with her. However D Day is the complete opposite. Imagine her birth/death day as all smiles, sunshine and rainbows, then D Day is all cloudy, rainy, and thunderstorms. D Day is the day your world is turned upside down. D Day is the day that will change your life forever. D Day is the day all your dreams get crushed to the ground. D Day is literally the worst day of your life.

As I mentioned for me D Day is more than just one day. It starts a month before when we got the positive results for an NTD on the 16 week blood work. Then the actual D Day on the 2nd of November, then 2 days later when I finally got to talk to my husband and let him know what was going on, then 3 days later when he finally got home. Now it could continue on through all the fighting we did with the Army to get him allowed to stay until the birth, then again after her birth when they wanted to deploy him right away and even on as we fought for a compassionate reassignment. But I am not that crazy, yet. No, I am usually good until about a week before Halloween, then I am usually good again a few days after the 2nd. Though during all those other times it is still on my mind, just doesn't get me quite as down.

For those of you saying, "but I will have been 5 years this year aren't you over it yet?" To you few heartless people I say just shut up and I am happy you have never been in this position. Until you have had your heartbroken with the words incompatible with life you have no right to say anything. Yes I still get sad, yes I still sometimes cry when I think of the memories of those days, yes I still get angry sometimes. And you know what, it is okay! I am not as bad as I was 4 years ago, and I may or may not be better 4 years from now, it doesn't matter. I will grieve the loss of my daughter, all the dreams we had for her, for all the days of my life here on earth, and some days it will just be harder than others.

Every year during this time the memories come flooding back. I was alone at the time of diagnosis and for days after and it always feels like I am alone every year during this time, even though Dwayne and the kids are with me. I feel like people think I am crazy for still being upset. I am just so thankful for those in the baby loss community who understand and my few non baby loss friends who don't judge me and are there for me and remind me I am not crazy and I am not alone.

For some reason this year this one memory keeps coming back to me over and over again. I was at the childcare place picking up Katie after my hour log drive, alone, back from the specialist. Probably took much longer than an hour that day with the tears flowing and phone calls I was getting. Anyways clear as if it was yesterday I see her in her pink sweat suit outfit running towards me as I walk in her rooms door with a HUGE smile on her face asking me if its a girl or boy, she was hoping for a baby sister! I had to put the biggest fake smile on my face, hold back the tears like I have never before and tell her she was going to have a baby sister. I haven't thought about this part of the day very often in the past. Usually I think about a few hours after that when I sat her and Jonathan down and told them their baby sister would be going to Heaven after she was born.

I have no idea why this memory keeps coming to me this year, am I supposed to be learning something from it? Am I supposed to be remembering something about it that maybe I have forgotten? I don't know, hopefully I can figure it out soon.

I apologize if this is all over the place or if it makes no sense, that is kind of how my life and mind are right now so I wouldn't be surprised if this was the same way.

To my baby girl Isabella, I love you and am so thankful to be your mother. I will take these sad hard days every year and embrace them because those hard days brought me closer to you, these days 5 years ago bonded us in a way that words can't describe. As I am bombarded with these sad memories, mostly my own selfish ones, I am also remembering the happy ones and they bring me a smile while the tears are falling. I know you send those my way to remind me you are with me, just like you did that day driving home when I felt you move for the first time. You are always with me baby girl. I love you!

 I have really felt him by my side this year, helping me get through and reminding me all the good that was done during our time with Isabella. Even though I am sad, and there are days I am angry, he understands, and I will continue to praise him while the tears are falling.

Psalm 34:18  “The Lord is close to the brokenhearted and saves those who are crushed in spirit.”

Tuesday, February 25, 2014

Fourth Birthday and More

Second night in a row and I can't sleep. Figured I would come here and ramble away :)

So hard to believe that almost a month ago was 4 years since I held her in my arms. So hard to imagine what life would be like if she was here. I picture her as a four year old running around getting into everything and so curious and learning about the world around her. She would be going to preschool this year. She would be the same age Katie was when I was pregnant with her. That is just so hard for my mind to grasp. It really couldn't have been that long ago! For her birthday we released pink balloons from the top of South Mountain and had cake like we always do. We also donated to a non-profit in her name this year. Her birthday usually isn't a sad day for me like D-day is. Her birthday is about celebrating her life. It was a good day. It was the first real happy day in a long time. She gave me a gift that day too, she opened my eyes and showed me it was time for some changes.

Sometimes it feels like yesterday she was born and sometimes it feels like a life time ago. I realized recently I sill not only mourn the loss of our daughter but our life before her death. When I got pregnant with Isabella it was during some of the happiest times in our lives. Dwayne had reenlisted in the Army, financially we were finally getting ahead. We had lots of family fun that year and it was just all around a very happy time in our life. Finding out we were going to be having another baby just made that year even better. Even though Dwayne would be leaving for his 3rd deployment to Iraq life was good.

After she was born I was intent on continuing to be happy and having a good life and trying to make her proud. Trying to show her we learned something from her, how precious life was and to enjoy every second of it. And I did, for awhile anyways. While we were living in Kansas for the most part life continued on good. At the time we thought a move would be good. I know we were worried about the repercussions from Dwayne's unit for the "trouble" we had caused with all this and for him not redeploying. That is the main reason we wanted to move. Sometimes I wonder if things would have worked out better if he had just requested to change units. I read AFTER we moved that you shouldn't make any big decisions, like moving, until at least a year after the loss. Oops!

I am not saying everything has been bad since then, but it does seem like sometimes a dark cloud likes to hang over us. I mean we made some GREAT memories in Virginia. It was good being around Dwayne's family and I made some great friends there but it just never felt right. It never felt like home. In Kansas it did, even when we lived in Georgia it did. It seemed like both Dwayne and I suffered from some bouts of depression quite often in Virginia.

Before the move to VA his Army career was going good. He was losing weight and staying in shape and really enjoyed his job. We move to VA and he is unhappy and his depression and just dislike of his job pretty much made him give up on keeping in shape and staying in the Army.

I think back to our life before the move and the kids were so happy. I mean don't get me wrong they had plenty of happy times in VA and they had some great friends there too, but it seems like after the move is when Katie's ODD/Bi-Polar really started to show and Jonathan's always happy self starting being easily upset and he starting becoming very negative about everything.

I do think that our depression bouts probably didn't help their moods any, and of course Katie getting old did have something to do with her ODD and Bi-Polar getting worse. But it just seems like when I think of our time in Kansas compared to Virginia they were so much happier before the move.

I was looking back at pictures on facebook tonight and I could just see so much happiness in my face in Kansas. And I also saw a much healthier version of myself. I gained soooooooo much weight in Virginia, which again I am sure had to do with the depression. I gave up on myself and my health, something I was very serious about before we moved.

We all like to pretend we are the perfect parents and have the perfect lives so it is hard for me to admit most of this one here. Hard to admit that I am sure I wasn't the best mom I could be those years in VA. I did the best I could at the time, that is all anyone can do.

I guess I am admitting all this because I am ready for it change. I am ready to go back to the happy healthy people we were. We have started a program called 21 day fix to jump start this part of our lives. When we first started I noticed that I was thinking more often of Isabella than I had in the recent past. I think it is because these feelings of wanting to better myself are bringing up the memories of those months after her death. I am starting to feel that same way again. I am hoping it is a good sign that life is getting back to how it should be.

Maybe this move to AZ was the right choice after all. It seems we have always been happier away from VA. I was doubting that we made the right decision for awhile to move here. But I just have a feeling that things are going to fall into place. I have a feeling that good things are coming. I know there will still be hard days and I know I will fight this battle with depression for the rest of my life. But I also know from the past that when I am healthy I am happier and the depression is much easier to fight. I feel like that black cloud that has been following us around is starting to go away. Everyday I am going to wake up and make the choice to better myself, a better me means I am a better mom and wife.

Sorry if I jumped around or none of this makes any sense to anyone but me. It is 2am here and I am going on only 4 hours of sleep. For the first time in years I am looking forward to tomorrow and all the tomorrows to follow. I have goals, I have happiness, I have a REAL smile on my face! Life is good again and I know my baby girl is smiling down on us. Happy that we are on the right track again.

 Isabella I am sorry we lost our way but we are finding our way back again and I am going to make you proud to have me as a mom, I love you!

Thursday, January 16, 2014


One of the first things you have to do when you get  a fatal diagnosis for your baby is decide what you want to do.  I was lucky that I had doctors that told me about all my options, not everyone is. There are a few options for you to choose from, all of which seem scary and hard in different ways. It is not an easy choice at all, you not only have to think about yourself, but of the baby and if you are married or have living kids they must be taken into consideration as well.

Carrying to term used to be the most controversial one but in the past few years it is becoming more of the norm as more doctors are letting women know it is an option. Now of course this is more of an option for those people who will not have any serious medical issues with continuing the pregnancy. On that note I just want to say that if your doctor tells you it wouldn't be safe for you to continue on with the pregnancy or that there is a chance of serious side effects, or that your baby is suffering from it PLEASE do so research on that before you decide. I have heard stories of woman who are pregnant with a baby with anencephaly that had doctors tell them it wasn't safe when in fact the most serious side effect is the extra fluid which doesn't happen in every anencephalic pregnancy Many have also been told the baby is suffering which is also not true in most cases.

There is also the option of early induction. They will induce the labor and you will deliver the baby like normal. Both this option and carrying to term are the only choices for a chance for your baby being born alive, though in some cases like with anencephaly that is only about a 50% chance.

For some people insurance companies will not cover an early induction because it isn't medically necessary so they decide to go another route. I do not know the medical term for this so I will just describe it. It is where you take a pill or get an injection that stops the babies heart beat then the insurance will cover the early induction.

For carrying to term or an early induction if your baby is born alive after 20 weeks, the weeks may vary by state from what I have heard, you will get a birth certificate. If your baby doesn't survive the pregnancy, birth or your decide to go the 3rd way then you will get a stillbirth certificate. I know this may sound weird but those certificates mean a lot to the babyloss community. It reaffirms that our babies were here!

The last option is abortion. In cases like these even people who swore they would never get an abortion choose to go that route. There are laws in each state though that say how far along you can be to get one so you have to take that into consideration too. Usually most states allow for later abortions with a fatal diagnosis for the baby.

No matter what choice you make it will be hard. For carry to term you are constantly having to explain to people, if you don't explain while you are pregnant then you have to explain why you don't have the baby home with you. For some people this can be hard, especially at first, for others it can be used as a way to educate people on the defect or gives you a chance to talk about your baby which can be a comfort. If you are far enough along then you will have to go through some of that too no matter what choice you make. There are so many things to take into consideration. Do you want to hold your baby, do you want pictures to remember them by and to share with others, do you want the chance for them to be born alive and get some time with them,  there are many questions you have to as yourself.

If your life isn't in immediate danger then take some time to think about it, to pray about it, talk with your spouse or significant other about it. Until you feel sure about a choice don't make one.The fact that you are unsure means it might not be the right choice for you. You have to live with the choice for the rest of your life, you need to be comfortable with it. Four years later there are still days I feel guilty for my choice of inducing at 33 weeks because of extra fluid causing my asthma to act up. Most days I am okay with it but wish I had taken a little more time to think about it. And again please do research about it because some doctors are still back in the dark ages when it comes to some birth defects. You don't want to abort then come to find out the doctor lied or mislead you and you actually had other options. I know women in those shoes, they wish they had had google and all the other sites out there that technology gives now to research easier on our own. Most of them say they probably would have made a different choice.

No matter the choice you make don't let anyone make you feel bad for picking that. You have to do what is best for you and your family. No matter the choice we all grieve, we all have the heartache. We all end up at home at some point with a broken heart and empty arms.

Friday, January 10, 2014

What Medical Professionals Need To Know

So over the years I have mentioned how great my doctors and nurses were when I was pregnant, during the delivery and after. I have also mentioned that I hear horror stories on a daily basis about what others have gone through with their medical staff. So I want to take a moment to sit down and write down what I have seen and heard over the years that has helped families when it comes to the medical professionals we deal with during this time.

First I am going to start off with what mine did right.

1. Have and show compassion. I know most doctors are trained to think of these babies as a fetus but to us they are our blessings, our dreams come true, our life. They aren't just a fetus to us. We have already dreamed in our head the years ahead, the memories we will make. They have already filled a spot in our heart that no one can replace, we have already pictured what they will look like and how they will act. So think about that and show compassion when giving us the diagnosis or at a regular appointment. Look us in the eye, show us you care. I still to this day remember my doctor doing little things like putting his hand on mine, looking in my eyes and quietly asking us how we are doing, and actually meaning it, actually wanting an answer. I remember him waking me up the morning after her birth and the first thing I saw was his face filled with compassion and understanding. He gave me a soft smile, again placed his hand on my arm and and just nodded. It only takes a few seconds to show you care and it can make all the difference in the world. I got blessed in the fact that almost all of my doctors and nurses were like this with us.

2. Give ALL the options to the family and don't push your opinions of what they should do on them. Give them as much times as needed to figure out what they want to do. You can give them the facts, the good and bad about each options but don't scare them into not choosing one or the other. My specialist did tell me what he thought was best but he didn't pressure me into it and he didn't try to scare me into it either. When we chose not to do what he thought was best he said he understood it is our choice and said he would do whatever he could to help us.

3. Ask us what we want, what we need. I was so scared walking into labor and delivery the day of the induction, we were late because of that. But one of the first things the nurse asked me is what she could do for us. I told her don't treat us any different than a normal patient. Now of course in some ways she did, thankfully, but when it came to all the regular stuff she didn't. She talked and joked with us and helped us celebrate the birth of our baby like it was just a normal day in L&D. I seriously think she was an angel in disguise, but she denied it, lol.

4. Give us ultrasound pictures. I can't believe how many families have said they never received the ultrasound pictures of their baby. Just because our baby is going to die doesn't mean we love them any less, doesn't mean we don't want to keep those pictures to look back on later, doesn't mean we don't want to share them with our friends and family. In fact give them more than what you would give another patient. We don't get years of pictures to look back on like everyone else does.

5. Take pictures. We didn't have the chance to have Now I Lay Me Down To Sleep at the delivery so the nurses took pictures for us, they offered we didn't even have to ask. That way we got the time she was with us to enjoy with her, holding her, loving on her, just enjoying her presence instead of worrying about taking pictures. While I would have loved to have professional pictures done these are just as special, they really thought about what kind of pictures we would have liked to have. They are a reminder not only of our moments with Isabella but also of our thoughtful caring nurses that day. While we didn't get to leave the hospital with our baby we did get to leave a big stack of pictures of our beautiful baby girl.

6. Give us memento's. We brought in the stuff to make molds of Isabella's hands, the nurses were kind enough to do it for us. But unexpectedly they also made a little bracelet with beads that made out her name. They had a memory box that I am guessing people donated, they filled it with all her arm bands, a lock of her hair, they took prints of her hands and feet and put them on paper dollies for us. They put the blanket she was using and the clothes she wore in there. I love pulling that box out and looking at all her stuff.

Now there are a few things that I wish had been done. This is mostly stuff I thought of or saw others mention in the years after Isabella.

7. Do not make us wait in the same room with all the other pregnant woman and babies at our appointments. I spent every appointment in that waiting room crying waiting to get called back. It's hard being around pregnant women and babies. Hearing them complain about heartburn and other mundane things just makes up want to reach and slap them, to scream. How we only wish the normal pregnancy annoyances was the only thing wrong with our pregnancy. Seeing those babies with their moms at their 6 week check up is just a horrible reminder that we will not have our baby with us at that appointment. We don't need a separate waiting area to ourselves. Give us the option to sit in an empty patient room or anywhere you have available that isn't the waiting room.

8. When we are coming in for regular appointments let the nurses know the situation before we are called back. When the emotions are still so raw it isn't fun having to explain over and over again, especially when you are even more emotional than normal being stuck in the waiting room with all those pregnant woman and babies.

9. Find out if there is a local prenatal hospice or infant loss support group, if there is give us the information for it. I never even knew there was a such thing as a prenatal hospice until long after Isabella had passed. I also didn't know about the infant loss support group that met right in the hospital where I had her. It would have been nice to have had the chance to take advantage of these services, especially since we went through it all alone having no friends or family in the area. We are already so lost with getting the diagnosis and not thinking straight that we might not even think to look up those type of things while.

10. Make sure you know the process with the funeral home. Even though I knew it was just a body it still broke my heart that my Isabella was stuck, I don't know where since the hospital didn't have a morgue, for 3 days after we left because of issues with the hospital and funeral home, partly had to do with that the nurses didn't know what to do, they thought we would have it all set up. But the funeral home wouldn't let us set anything up until after she passed.

What it boils down to is treat us and our babies with the dignity and respect we deserve. Being told your baby has a fatal birth defect is harder than you will ever know, don't make the situation any harder on us than it has be. Show love and compassion and if you aren't able to do that recommend a doctor that can.

Before I go I just want to give a heartfelt thank you to the staff at Topeka Maternal Fetal Medicine and my nurse practitioner, doctor and the midwife and nurses that worked L&D at Irwin Army Community Hospital when we were there. They all made what was a very heartbreaking time for us a little bit easier.