I've been thinking a lot about Virginia lately--it's crazy that a year ago we were so excited to be pregnant and a lot of those memories are coming back. As I reflect on her life and look back on my journal entries, I realize that I should have done more. I look back on all of my OB appointments with her and at EVERY appointment something went wrong. My first appt. with Dr. S. she had said that she did not need to do an u/s unless something was wrong--well, she did an u/s. The next couple of appointments, they had trouble finding the heartbeat at each one of them and usually ended up doing an ultrasound.
If I could go back to any time in my life I would go back to April 8, 2010 and have clarity of thought. April 8 was the day that we received the news that Virginia had no chance of survival. We had an hour long ultrasound (where we still had no idea that anything was seriously wrong). Afterwards we met with the genetic counselor. This is where I would love to go back to. I would have demanded that I speak with a Maternal Fetal OB. That person would have walked us through the ultrasound and showed us exactly what they were seeing with our baby. I would have requested the ultrasound pictures along with the ultrasound video. I would have asked for a second opinion with a OB who has specialized with this condition.
I feel like as a mother my greatest job is to be an advocate for my children and I know that I advocated for Virginia but I know that we were just so overwhelmed by all of this that we could have done things differently.
I wish too that I would have kept my care with a Maternal Fetal Physician as opposed to my OB. My greatest desire was to be able to hold my baby and touch her skin, count her fingers, her toes, etc. I was able to hold her but it was sooo hard to look at her body. I wasn't able to count her fingers or her toes. In fact, I didn't even look at her belly or her arms. I could not even differentiate between the different aspects of her face.
We were watching EMHE last Sunday night and as they are describing the family they say that the little boy was born with Hydrops Fetalis. I had to pause the tv and just stop for a second because I wasn't sure if I could continue to watch it. This is the same condition that took the life of Virginia (but she also had cystic hygroma--fluid behind her neck). I found it to be very bittersweet as well because I am happy for this family that their little guy survived this terrible condition, I am also glad that it will bring national publicity to this disease but it also means that another family has been affected by this disease.
I had never heard of hydrops before I had Virginia and it just breaks my heart that I hear of it sooo often now. There is just not enough being done for this disease. No parent should be told in a geneticists office that there is nothing that they can do for their baby and that there is no hope. Obviously there is hope because there are babies that are surviving this condition. I think that part of my mission is to try to bring more awareness to this disease--even if it just helps families to know what to expect.
In the last couple of weeks, I have seen two rainbows peeking through the clouds when it was not raining or anything like that. It was not a full rainbow just a partial one.
Each time I saw this, in one way it hurt a little because after you have a perinatal loss people say that they are having a "rainbow baby". There are soooo many people that are now pregnant with their rainbow baby's that lost a baby at the same time as Virginia. I am definitely happy that they are pregnant but would also like to be pregnant as well (I would be 32 weeks if I had not miscarried.
The other thing that ran through my mind is that God keeps His promises. I may not have as many kids as I would like but He is still there with me carrying me through whatever storms I may go through in life.
I do not recall seeing many rainbows in December but know that God is showing me that He is waiting for me.
I wanted to write you this letter since I won't be writing in your journal again until you turn 3 in June (I can't believe that you will be three then)!
You have been such a big boy this year as there have been soo many changes in our lives this year. We were so excited at the beginning of 2010 because you were going to be a big brother. Our world came crashing down when your little sister was born still in May. We were so proud of you though as you did well with mommy and daddy being gone twice while trying to deliver your sister. This was the longest amount of time that we had been away from you and you did sooo well.
Your other biggest achievement has been your speech. In the beginning of the year you were struggling so much with talking and now you are doing soo much. You can say your ABC's with no problems. You are able to spell your name, daddy, mommy and Ida.
Another big achievement has been that you are toilet trained except for at night--you have been doing this consistently since May!
We have been going to a church closer to our house and you have been doing excellent going in to the nursery. Mr. W. teaches you a Bible lesson and when we come to pick you up you are so excited to show us your papers. This brought a tear to mommy's eye the first time that I went to pick you up.
As we reflect on this last year, it has been an extremely painful one with the loss of your sister, Virginia and then the miscarriage. We are so thankful that God has blessed us with you and that you are such a little miracle. You have the best hugs ever and are such a cuddly little guy!
I know that this new year is going to bring even more changes in your life as mommy begins working full time third shift. My biggest struggle is how this is going to affect you since you are such a mommy's boy. I struggle so much with it because if you are our only earthly child I want to be with you every second that I can but I know that this job will help us out financially and hopefully we can try again to have another baby (you love babies so much and it breaks my heart that you don't have a brother or a sister here on earth). I know that you will be in wonderful hands with grandma and that I will be with you as much as possible. I love you so much and pray that you will do well with all of these changes! Love you Siah! Mommy