Life Changing News

Our life has become a whirlwind over the past 3 weeks.  I have debated about sharing our news for a few days now but really feel encouraged to put everything out there. I know we are not in this alone and have seen such love and support from our family and friends so I want to share our story.

August 3rd was supposed to be such an exciting day for us! We were finally going to find out the gender of our sweet baby after 22 long weeks of waiting! I was finally excited to start thinking about names and decorating and just imagining our life with a little boy or girl. We had even planned our gender reveal party that evening after our appointment because we wanted to share the news with all of our close friends and family! Little did I know that the excitement of the gender from the ultrasound would be overtaken by more serious things.

We found out that we would be having a sweet baby girl but this wasn't going to be everything we planned for. The ultrasound showed extra fluid on the brain and caused enough concern to be referred to a High Risk Pregnancy Specialist from UVA.  I thought that day was going to be perfect, find out the gender and share with everyone! Suddenly after the devastating news that something may be wrong with our baby, I was overcome with fear and worry. I would have to put all of those feelings on hold as we had a gender reveal party to do. My husband and I got ourselves together and arrived at the party. There were so many excited people there awaiting on the big news, is it a boy or girl? It took everything I had to make it through that night with a smile on my face.

Our appointment with the High Risk Pregnancy Specialist was scheduled for that friday, August 7th. We were lucky enough to be seen at the Baptist Hospital as they have a UVA doctor come every friday to see patients in Lynchburg. We were nervous but were finally hoping for some answers and clarifications of what was going on with our baby.  The ultrasound lasted about 45 minutes and made me very anxious because the techs that do the ultrasounds are not supposed to say anything. My husband and I watched the TV monitor in front of us, trying to figure out everything that was being seen. The tech was good and moved from different parts of the body very quickly. Before I knew it, she was done and the doctor was on her way in to see us.  I looked at my husband with a "I hope to hear something good" glance before she entered.

The doctor came in, introduced herself and sat down to talk to us. She asked why we thought we were referred here. That question just made my skin crawl, almost made me feel like she knew a  lot of things but wanted to find out just how much we knew. I explained we know there is fluid on the brain and that is all. She then proceeded to tell us she saw some other concerning things on the ultrasound like the shape of the skull, fluid on the brain, and possibly a club foot. I sat there in complete silence. She then proceeded to explain to us that her concern was our sweet girl may have Spina Bifida. I had heard of the term before but had no idea what it consisted of. A million questions starting running through my mind. I wanted to know everything about it and how it would impact our little girls life and even how it would change our life. The doctor told us she was unable to get a good picture of the spine and that was needed to be seen to make a definite diagnosis. She recommended that we go to UVA to see yet another doctor and have another ultrasound done. Needless to say, my husband and I were in complete shock leaving that day. We couldn't even put our feelings into words. It was too much to take in for one day.  We had hoped to get answers that day but were still left with unanswered questions about what was really going on with our baby.

We were scheduled to see a doctor at UVA on August 19th. Waiting on that week and a half was heart wrenching. There were still so many unanswered questions we had and so many "what ifs" that were going through our minds. We spent the majority of that week and a half researching everything we could about what we were told from our ultrasound.....fluid on the brain, club foot, skull shapes, spina bifida, MSAFP blood tests, amniocentesis, etc. We spent our evenings talking about our research and trying to sort out our emotions from this whole process.

We saw the doctor at UVA on August 19th for yet another ultrasound. The tech spent about an hour doing the ultrasound and was not able to get good pictures either. It seems that the three ultrasounds we have had, no one has been able to see all that they need to. She tried different attachments and even had me roll on my side a couple times to try and have the baby flip or move. Finally, she called it quits and showed the doctor what she had. He viewed the images and then spoke with us. He gave us the heartbreaking news that our little girl does indeed have Spina Bifida.

I was ok in that moment of hearing the news. I had somewhat mentally prepared myself that we may hear that news so I managed to keep it together to ask some questions. So much was running through my mind at that point..what do we do now? How can we fix this? Is she going to be ok? How did this happen? What will our life look like now?  The doctor explained that there is a surgery that mothers can have in which doctors will operate on the unborn child while in the uterus. He said studies have shown that having the surgery improves the condition compared to waiting until after birth. He explained the surgery is done in Philadelphia and a candidate must meet the long list of criteria. He was going to find out if I would eligible and let us know. If we found out I was eligible, it would be done within the next week.  If we were not eligible, then we would followup with a pediatric neurosurgeon until a scheduled C-section close to my due date.

We sat there with our heads spinning. I finally had that melt down, ugly crying, breaking point after the doctor left the room. It had just become too much news for me to process within that short of a time. My husband and I tried to make sense of everything.....

We found out today that we are not eligible for the surgery due to the shape of my uterus. So we will see a pediatric neurosurgeon at UVA in the next 3-4 weeks. Meanwhile, we will continue our regular followups with my OB. It is a little disappointing that I am not eligible for surgery because I want to give my daughter the best possible outcome of this condition. But maybe it is a blessing in disguise..

My husband and I have been through so much these last three weeks. We have felt every emotion possible about this news. I will tell you now though, I would not be able to do any of this without him. He has been my rock and my encourager throughout all of this. He tells me every day we will make this work, we will adapt our life for this little girl. We can do this. It's amazing how simple those words are but how much they mean to me. We are in this together and we are going to do the best we can.

While doing our research, I have stumbled upon a blog written by a mother with a little boy who has Spina Bifida. I don't normally turn to other peoples experience to find out the facts of the disease but I couldn't help but reading post after post by her. It truly has become something I absolutely cannot stop reading. She writes about real life experiences in living with Spina Bifida. She writes in such a way that brings encouragement and positivity to all of this news. She even brings in humor which she has said is important to have in life.  She is honest and open about everything in her life.

A couple posts she has written has really been meaningful to me. One is when she describes "Diagnosis Day" and all the feelings that have accompanied it. She talks honestly about feeling angry about hearing the news and jealous about others having healthy babies. Its just reassuring to hear her be honest because I have felt those emotions. And its just the honest truth. She explains that its OK to feel this way and you are allowed to feel this way.

Another post she wrote gives a list of encouraging words for those that have found out their child has Spina Bifida. My husband actually sent me part of the list yesterday. #7 on the list says "Try to be patient with the people who love you. Family and friends want to help but they may say or do things that just rub you the wrong way. Try to be patient". This has been true because we have been so overwhelmed ourselves and forget that when we share the news, people haven't been doing research like we have and just aren't familiar with everything so we are trying to be patient. #8 on the list says "Remember that you can do this." and #9 says "Remember that you can do this" and #10 says "And just for good measure, remember you can do this."    Hearing those words has been such an encouragement. I have thought already, "can I do this?, Am I capable of taking care of her? Can I give her the best possible life?" and just hearing those words lets me know that I can do this..and I will do this. 

I will attach the link to her blog if you would like to read. It really makes things sound encouraging and gives us a glimpse of what our life will hold. She really has changed so much in my mindset and for that, I am extremely thankful. Hearing this news could devastate us and bring us down or we can learn to see the positive in it all.

I will keep everyone updated on the process as we will spend the next four months seeing specialists and coming up with a game plan. I do want to thank my husband for being with me through this life changing news. He has kept the encouragement and positivity going in order for us to get through this. I didn't know if our marriage could get any stronger than it was, but I was proved wrong. Each day we are together, our marriage and bond gets stronger. I am extremely lucky to have him in my life and thankful to have him as my teammate! I know that we will be great parents to this sweet little girl and give her everything we can!

We are encouraged to start this "new normal" in our life with our sweet baby Caroline!

www.whatdoyoudodear.com (check out her post and read some about it!)