I made this blog Thoughts of an Angel Mommy, Chapter Two to have a virtual journal and place where I could continue to share our joys and our heartbreaks. Life continues to keep us on our toes and we do our best with each moment.
Without further ado, the update that I have wanted and dreaded to write about our baby girl. Our family asks for continued support during the months ahead.
*Trigger Warning for those who've experienced pregnancy complications, pregnancy or child loss.
In August I had a DNA blood test to determine if our baby girl had any extra chromosomes, 13,18, 21. Standard blood test done in my doctor's office and this could tell us if there was anything to be concerned about or what to anticipate. I was told the first blood test did not have enough fetal DNA so I had to repeat the test two weeks after I took the first test. These results are not always accurate at times however invasive compared to other tests so we decided to proceed.
About one month ago in September we learned the results from the second DNA blood test. At the time there was a possible concern for Trisomy 18, otherwise known as Edwards Syndrome. I was told by the genetic counselor who called me that there was 6% fetal fraction and concerns for Trisomy 18, recommendation was to do diagnostic testing and suggested an amniocentesis. There had not been any prior concerns, uneventful pregnancy all things considered, growth was on target, I was feeling baby movements and kicks, so we were not very worried however knew there could be a concern. We decided to proceed forward and received a referral to a fetal specialist at a high risk doctor's office.
On September 23rd I went back to the fetal high risk doctor's office, had the amniocentesis and blood drawn to see if any possible chromosomal abnormalities in myself that could put any children we have at higher risk for Trisomy 18. I felt really sick afterwards and had to lay down for one hour, once I felt better a quick ultrasound revealed everything was ok with the baby and myself. Just my body reacting to the procedure.
That weekend I took time to rest, was a little uncomfortable and tired however no preterm labor and baby girl remained strong as my body healed from the amnio.
On Monday, October 5th, the day of our wedding anniversary our dreams of a future with our baby girl were shattered, our hearts broken into a million pieces, and any hope we had left taken from us. A part of my soul died on October 2nd, the rest of my hope died with it on October 5th.
If we are lucky enough to be blessed with time we may get as much as 1 year with our baby girl, however realistically speaking with her heart defect it probably will be a matter of minutes, hours, days, weeks, or months. It doesn't matter if we opt for heart surgery or not, the outcome is our baby girl is not expected to live.
Next week I plan to see the pediatric cardiologist at another office where they will do a fetal echocardiogram and I will have a consult with the cardiologist afterwards. Then I will see my midwife later in the week to discuss our birth options and if the heart defect is severe enough that surgery immediately following birth may be recommended. We will need to decide what my birth plan looks like and if with minimal people or multiple people in the room.
For those who knew of our happy news we realized eventually we would have to make an announcement and there is no easy way to say the baby you've been dreaming of for so long isn't expected to live. Right now it is easier to write and stay composed, that's why no one is receiving a phone call because we will most likely be in tears during the conversation. Truth is we don't know when we will be ready to talk out loud about this. Very few people before this blog knew the news, we haven't the emotional energy to break everyone's heart one at a time.
This all feels very raw and carrying a child within me that I know will not have a long future is hurting my soul. We all are feeling very sad about this little girl's future, and mourning the loss of our baby girl not getting to grow up with us as a family of four.
What we need right now is your support, love, prayers, mantras, strength and positivity for a gentle last trimester, birth, and peaceful future moments together.
Our baby registries have been minimalized to a few essentials only. We no longer need clothing or most anything else. We do have some pieces of clothing that should help get us through the first few days, weeks or months, if we are lucky enough to bring our baby girl home. Anything else we will play it by ear. We are already actively grieving and our son knows that his baby sister is very sick and probably won't live very long. Our son will need family, friends, and we will need support at home before and after the baby is born. If you think you can help, please let us know.
We have a lot to plan for the future and it all is overwhelming right now. We were not ready to say goodbye and this will be the most challenging months ahead of us. I plan to write and share our story because I know that this also helps other grieving families know they are not alone.
Our miracle may be leaving us in the future, however she will never leave our hearts.
Much love! <3
PS- A few quick please and thank you items to mention.
Sometimes we don't know what to say to a grieving parent so I wanted to be sure to include these. Also this is what I generally share during Pregnancy and Infant Loss Awareness Month in October.
-We don't see this as something that happened for a reason (because it didn't) or that it's meant to be, or that this is teaching us something other than how to be strong through the second most horrible loss we have experienced since our identical twin daughters. You probably have no idea what we are going through, so just by being there your showing support is appreciated. A simple "I'm sorry" and saying you're thinking of us, praying, or sending love our way, means everything. If you can do more as the due date arrives and passes we thank you because I know some days may feel daunting when we don't have the time nor motivation.
-As of right now we have no idea what type of child support we will need when this baby girl is born. A babysitter (family or friend) for our son will mean a lot, and when he can come up and meet his baby sister it will be important that he can get to the medical center or hospital right away.
-Remember that we may not share the same religious or spiritual beliefs, so please don't say that our baby is in a better place once they are gone or that there was a plan for why this happened. No parent should have to cremate or bury their child.
-Please don't tell us to be thankful because at least we have our son or may be able to have another, or asking us to move on, it took us years to get here again through other multiple losses and struggle. Instead talk to us about fond memories and please speak our baby's name in the future. Hearing our baby's name is music to our hearts. -Please don't be worried about seeing us upset or being cautious around us, we appreciate seeing you during this time and in the future, it helps us with healing to talk and see those who care about us.
-There is no need to remind us that we need to be there for our son, we know that, we are all going to be grieving together. It also helps not to be told that our child wouldn't want to see us be sad, if you are a parent which child could you live without? Now tell yourself not to be sad. We all grieve differently and in our own time.
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