The reason I have started a blog is because I realized that I am in such a routine of putting on a happy face and pushing aside any difficulties that come my way. That is just how I deal with things (or don’t deal with them). My husband, Hunter, and I just had our first child two months ago and we are obsessed with her…she is an absolutely perfect baby and she just so happens to have Down syndrome. I started typing out our pregnancy story because I did not want to forget one bit of it, and that’s when I discovered how therapeutic it was to type it all out! I hope that you will stick with me through this lengthy post. So, here I go…
Being a special education teacher, I know that there are many questions and curiosities that surround different disabilities. So, I know one of the main questions surrounding Down Syndrome is “did you know before you gave birth?” Let’s start at the beginning! This will help me conclude my final point….
When we found out that I was pregnant, Hunter and I were ecstatic! This is exactly what we had hoped for… After several months of trying and being late (every time) the stick finally said PREGNANT! Exactly one week later, I started bleeding, a lot. Panic and devastation set it and that’s when all of the Doctor appointments began. At this time I was about 6 weeks pregnant, the doctor did an ultrasound and there was no heartbeat…the doctor explained that there was still a chance that the baby was still alive and was just too small to see a heartbeat, but that there was a greater chance that I had lost the baby. We then started blood work on me to see if certain levels were increasing (for life) or decreasing (for a loss). After a long weekend of waiting, it was confirmed that the little bean inside of me was still thriving! This week and a half was one of the most exciting, then most devastating, and back to the most exciting time of my life. More then ever, I realized that the Lord is so faithful and our little baby was a fighter!
After that, the remainder of the first trimester and the second trimester were a breeze! I did not take one day of pregnancy for granted and I cherished every pound gained and every symptom that I had! And oh the baby movements… Every single one of them were a blessing, even if they were uncomfortable, I made sure to not complain because this was a constant reminder that our baby GIRL was still thriving!
At weeks 28 and 29, I failed both glucose tests and was diagnosed with gestational diabetes… For those of you who do not know, this meant that the placenta was not able to turn my sugar intake into insulin and the baby was getting too much sugar. No it was not fun constantly checking my blood sugar levels, but I was thankful to have that knowledge so that I could keep our baby, Olivia, healthy!
Stay with me…I am getting closer to answering the question “did we know.”
Week 30, I was diagnosed with Polyhydramnios, which meant that I was carrying too much amniotic fluid. The causes of this could have been 1) gestational diabetes 2) a genetic abnormality or 3) unknown. Since I had gestational diabetes, the doctor was fairly confident that this was the cause considering that there were no other indicators that Olivia could have Down syndrome. The only real fear that came with this diagnosis was if my water broke on its own, I would be a high risk for an emergency delivery. This was indicator #1
Week 32, at my biweekly doctor appointment it was discovered that I had gestational hypertension, or high blood pressure. After hours at the hospital, I was put on medication and sent home. This would also be the start of weekly doctor appointments because the high blood pressure and polyhydramnios could put a strain on Olivia. We were monitored very closely and had an ultrasound every week which would lead to the next indicator.
Week 35, due to extremely high blood pressure, I was put on bed rest and was told that I would not be able to return back to work until after I had the baby. This was a hard pill to swallow because, despite my diagnosis, I felt great and everything with Olivia continued to look great too!
Week 36, aside from the scare of losing my baby, this week was the toughest. I had my weekly doctor appointment on a THURSDAY, however, my appointment went a little differently than it normally did. Usually I would head into ultrasound, the tech would measure Olivia, measure the fluid levels, check Olivia’s heart rate, and check the function of her major organs, and then I would see my doctor. This week, I saw the doctor first because he had to go into surgery and then I went into ultrasound. The ultrasound tech did everything she usually did, but I noticed she looked a bit puzzled. She had measured Olivia’s femur bones several times, and for the first time they were measuring short. She didn’t elaborate so I didn’t think anything about it. After the ultrasound, she took me back to a room and said that she was going to call my doctor to see what he wanted her to do. I was so confused and started googling as fast as I could while she was out of the room because something was obviously wrong…Short femur= she could just be short, she could have dwarfism, she could have Down syndrome. The tech came back in the room and told me that she had made me an appointment with a high risk doctor. Indicator #2
On that following MONDAY I had my appointment with a Maternal/Fetal Specialist, or high risk doctor. The appointment started with an ultrasound, the tech looked at everything for about an hour. She was silent, no indication of how everything looked. She continued to look at one thing in particular, but it wasn’t her femur bones…it was her heart. She finally said “I think I have enough pictures, let me go show the doctor and I will be right back in to get you.” Well, 30 minutes passed by before the door opened again, but it was a different ultrasound tech… I knew something wasn’t right…so I asked “Is something wrong with her heart?” The tech said that they were looking to make sure Olivia had two separate valves (or something like it) and that it was just difficult to see. After about 30 more minutes, she finished up and took me down the hallway to a room with a round table, 4 chairs, and a box of tissues. My heart broke because I knew at that moment that something was not right with the perfect baby inside of me. The doctor finally walked in with a sheet of paper, and on this paper was a picture of a heart. He showed me what a normal heart looked like and showed me how it should work. Then he took a pen and made a circle on the picture and as matter of factly he said “your baby has a hole in her heart.” Not a murmur that should close up on its own, but a hole. I was in shock, devastated, and terrified… We were going in for her femur, not her heart! He asked me if I had any other complications throughout the pregnancy and I told him what all had been going on. He went over all of these different percentages of causes and amongst them was the percent that Olivia could have a genetic abnormality…that number just kept getting higher and higher. The doctor said he would make me an appointment with a pediatric cardiologist from LeBonheur as soon as possible. The doctor hugged my neck and went on his way. Indicator #3
As we were checking out, I was told that the cardiologist only came in on Fridays, so I was going to have to wait the whole week to get more information! Later that day the receptionist called to tell me that the cardiologist would be going out of town at the end of the week, which meant I was going to have to wait two weeks! So, at this point all I could do was pray over Olivia and try to soak in this news… That our perfect little girl had a heart defect that could possibly cause her to need surgery at birth.
The next day, the nurse called me around 3pm and told me that the cardiologist was going to come in at 8am on Wednesday just to see me…Again, I thought that this couldn’t be good. These two days were amongst the hardest days for me! It was hard to comprehend that for 36 weeks, Olivia was healthy and growing just as she was supposed to, but now she was not. I was terrified and devastated not because of the fact that she could have Down syndrome, but because she had a hole in her heart. I tried to be strong and act like everything was going to be okay in front of my husband and my mom, but in my time alone, tears would stream down my face! This was so hard for me to talk about, even to some of my closest friends! There was nothing I could have done to prevent this and nothing that I could do to fix it… I was helpless. I spent many hours during this time praying and praising the Lord and calling upon my prayer warriors.
Wednesday, I was in the doctor’s office at 7:50am. I watched the cardiologist get out of his car and walk into the building…the anticipation was killer! Just like Monday, I was taken to an ultrasound room, but this time the cardiologist stood over the tech’s shoulder as she worked, this lasted for about an hour. I was taken to the same room with a round table, 4 chairs, and a box of tissues. The cardiologist sat down with my mom and I with a picture of a heart, again I was told how the heart should work and where her hole was. But, unlike Monday, he said “I don’t see a hole in your baby’s heart. I saw the images from Monday’s scan and today there is not a hole in her heart!” And at this very best and most joyous moment, I knew deep down that Olivia would have Down syndrome. No, there was nothing to confirm this, but I just knew. I never said the words out loud, but I knew.
At week 39 Olivia decided to make her presence! When I first heard her cry from behind the curtain, I knew that she would be my most precious and greatest gift no matter what! At this instant I already felt the most powerful love for her! However, for two days at the hospital no one said anything about Down syndrome, they just kept saying she is perfect, and she was and is. No doctor or nurse, nothing. It was the big elephant in the room between family, friends, and staff which made me so sad because I felt that they thought if it was mentioned that we would be less thrilled or in love with our perfect girl… Everyone just avoided the topic. I felt like we then had to convince everyone that it would be okay, that we would be okay either way. I finally asked a nurse if they thought Olivia had Down syndrome, and she said yes. Someone finally said yes (although it still had to be confirmed with blood work) and I was almost relieved. For the weeks leading up to her birth all we were able to do was wonder and worry, but now we finally had our little girl in our arms and that was all that mattered!
I did not share all of this for anyone to feel sorry for us or for the situation because there is absolutely NOTHING to feel sorry about! I shared this because the Lord showed me so clearly that he is in control, and that he is sovereign, and that he is ever so gracious! I almost lost Olivia, but he kept her alive. Olivia had a hole in her heart, but he healed her. I believe that God gave us those scary situations to prepare us for her diagnosis. She is here and she is healthy… Having Down syndrome is nothing compared to what could have been. I am confident that we will have difficult days ahead (like any new parent) and we are having to learn a whole new reality…BUT, right now Olivia is a newborn and she is just like any other newborn! This will definitely be a learning process, but it is not a process that I am scared of! We have the most supportive family and friends surrounding us and our journey… I know that Olivia will continue to be a fighter and a strong willed little girl! I just pray that the Lord will continue to guide our path so clearly!
Finding the Joy-Being the mom of a child with Special Needs 