I am not one to necessarily follow the crowd, but after reading so many stories about other mothers of special angels like you, I feel like its time I wrote a little about your birth too! :) I found out I was pregnant around Caleb's birthday last year (and here we are coming up on it again, only this time we have you!). I had been feeling strange for several weeks, and I took the pregnancy test , not because I truly thought that I was, but instead to hopefully put my mind at rest. Much to my surprise, it didn't come back negative at all! I rushed into Daddy and I's bedroom, waving the stick around, saying, "What does this MEAN??!!!" Four tests, and two trips to the store later, I finally decided that I really was the recipient of a miracle! A trip to my doctor confirmed what I already knew. He voiced some concerns about some of the symptoms I was having and the results of some blood tests he had run, and after I cried and begged him to do whatever had to be done to make sure that you were safe, he sent us to have an ultrasound. You were such a tiny little bean, 6 weeks old, but with such a strong little heart beating. I laid there in that darkened room with tears streaming down my face. You were, and are, the answer to a prayer that I never thought could be. Little did I know how often I would lay in those darkened rooms, with tears on my face, both happy tears and sad ones too, before the day I got to look into your gorgeous face.
I took what I call Herculean doses of progesterone for the six weeks following that first ultrasound to ensure that you stayed right where you were. It made me sick as a dog, but even though I counted the days until I could stop taking it, I took those pills every single day (me..who can never remember to take any type of medicine for more than a week!) and would have suffered much more just to have you. Of course at that point we didn't know that you were a Lydia and not a Levi. :)
We had another ultrasound, and a multiple-marker screening blood test at 13 weeks. Then came the first pin pushed in our balloon of joy. The screening test had come back with an elevated risk for Trisomy 21 or another more serious genetic defect which could mean that our precious little bean would die at birth. The doctors pushed us to have an amnio, but Daddy and I stood firm that it wouldn't matter and that even though the risk of miscarriage was low (1 in 500), we had worked entirely too hard to ensure that we avoided that. We loved you no matter what! All of us agreed to wait and see what further ultrasounds showed and to have another follow-up screening test at around 20 weeks.
The ultrasound at 16 weeks showed a small amount of thickening on the back of your neck,but it was still slightly below the upper limits, so it was not a great concern, other than to urge our doctor to schedule yet another later ultrasound. Oh darn! We also got to watch you rolling and playing and sucking both of your thumbs!
I had been feeling your acrobatics for several weeks already and I cried (yes again!) to see my tiny bug starting to look like a baby, who already had a personality! I just continued to believe that you were such a miracle already that God couldn't possibly give me a baby with something wrong with it...Denial, already.The screening test @ 20 weeks came back negative for chromosomal defects, and the ultrasound in August brought those three little words that I had been dying to hear..."Its a girl!" Sweeter words have never been spoken, Liddy, never in the history of the world. Sad news that day as well. While we were celebrating a brand new angel, Grandpa Wilbur went to Heaven to be with them.
With the next ultrasound came the roller coaster ride of a lifetime.While you entertained us with your acrobatics and stubbornness, you refused to allow the ultrasound technician to get a good view of your heart. The doctor came in and attempted to see it better, and then told us that we would have to come back at a later date for yet another followup. He said he had some concerns about your tiny heart, that he could only clearly see three chambers. It could be something, it could be nothing, but he needed to see it again to make sure.
Pins and needles for the next several weeks, waiting on that ultrasound. While seeing you was always cause for excitement, this time there was a slight sinking feeling in my belly. I was scared for the first time. I had blown off all the other signs as needless worry. I prayed harder than I have ever prayed before. The marker that came back as normal reinforced in my mind that I was right, nothing was wrong with MY baby!
Then the sky fell. We returned for the follow-up. We watched you play with the technician. You waved at daddy, you pulled your foot back and hid it when they were trying to measure it, I forgot for a while exactly why we were there and simply fell further in love with you! By the doctor came into the room, I think that I had convinced myself that it was all some paranoid delusion that had brought us there. You were fine. I could see it with my own eyes.
But the doctor said he only saw one heart valve...I don't know much but I know that there are supposed to be two. He said that this condition was often caused by Down's Syndrome. He said that we would have to go to Riley Children's Hospital for further follow up. He said they NEEDED to do an amnio, so that the doctors at Riley knew the entire picture of what we were up against. I looked at Daddy, and he looked like someone had just punched him in the stomach. And I laid there on that table crying hysterically. This had to be a nightmare. All I had to do was wake up. We went ahead with the amnio, which we had previously been adamant about NOT wanting. Lydia, I think that day was the worst day of my life. They don't tell you that an amnio HURTS. They make it seem like its a ho-hum procedure that doesn't affect either one of us...but it did. It hurt my heart as well as my body. I was terrified that they were going to hurt you and terrified by what they would find out. We left the office, your strong mama still a mess of tears, and went home to wait for the moment of doom.
I convinced myself that although your heart wasn't made the way it was supposed to be, that didn't mean that you had Down's. Every "soft" marker they had been looking for for the last several months was missing. Other than your heart, by all indications, you were in there growing just the way you should be. We made an appointment to go to Riley later in the week, and waited.
Then came the phone call that changed everything. Looking back, I had to have known already. I was just deep in my denial. But the nurse's voice on the other end of the phone nonchalantly tore my world apart with a casual, "The amnio came back positive for Down's."
It quite literally felt like the weight of the world settled heavily on my heart. What did this mean? What kind of life was my beautiful baby girl going to have now? Every dream I had seemed to go up in smoke with those 7 little words. And I am sad to admit, I started screaming at God, "WHY US?"
I spent the whole week on the verge of tears (or crying) and meeting with the specialists at Riley calmed me a little but I still was grieving for that baby of my dreams....It took me, and Daddy, a while to reconcile the life we imagined with the stark reality we thought we faced now. Ultrasounds and echocardiograms every month to chart your growth and check your heart. Tours of the NICU and the resuscitation island (whose very name struck absolute terror in my heart!) meetings with neonatologists, doctor appointments and more doctor appointments...learning an almost entirely new language of medical jargon while soaking up every bit of information that I could gather. I remember so clearly talking to the neonatologist who was telling us that once you were born, you would be whisked away to the resuscitation island, where Daddy could see you but I could not, and then stabilized for immediate transfer to Riley's NICU. Once they had you stable, they would bring you in for less than 5 minutes to let me see you (and if I was "lucky" hold you for a minute"). I sat there in tears, and the doctor said, "Can I ask why you are crying?" Uhhhh. You're telling me that I will be "lucky" to get to see my brand new baby through a bed made of glass for five minutes before you take her away from me. Why in the world would I be crying?
As time went on, I began to believe that, no matter what anyone said, you were still the baby of my dreams. No one knew you like I did. I celebrated every ultrasound's growth, and rejoiced at every echo's lack of change. I still in my heart prayed for a miracle, that the dr.s were wrong, but I slowly began to come to grips with the reality that maybe they weren't. That's something I had to prepare myself for. I was sooo ready for you to get here and yet, I wished that I could keep you safe inside me forever. While you were there, nestled in my tummy, you were healthy and whole and absolutely amazing! Your heart wasn't causing you problems. You were growing (albeit slowly) and continually performing your pranks and acrobatics. You danced while Caleb played his clarinet, and continued to resist any attempt to look at you, measure you, or monitor you.
31 weeks pregnant, we started twice weekly non-stress tests. And at that ultrasound, this is what I got to see......
Christmas finally came and went, with contractions the entire day. I was convinced that you would be here on New Year's Eve, and sure enough, that day was spent timing contractions. We ended up making our second run to BMH's labor and delivery unit to be checked out, and I thought this time was a sure thing. You were on your way. Sadly, no dilation still.....so after a few hours, we were back home without a baby. You were 39 weeks old on New Year's Day.
January 3rd....we got up early (Mommy had hardly slept because she was soooo excited!) and headed to Indianapolis for induction. We checked in at 8 am, and at 10 they started induction medicine. I was nervous, scared, and also excited, because although I didn't have any idea what a long wait was ahead, I couldn't wait to meet you!