Last year this time I was pregnant. Pregnant and very, very sick. I won't go into details, but it was a very hard summer. I was excited to have my first summer off ever, and I had plans to garden, decorate my house, etc. I did none of that. I lay on my couch and watched the entire show Gilmore Girls. The entire thing. To this day, if I see an episode of Gilmore Girls, I feel sick to my stomach. I was so sick all summer! It's OK, I spent the time dreaming about my perfect baby that I couldn't believe I had to wait nine whole months to meet! (I am impatient by nature)
Last fall, when I was 16 weeks along, I went back to work as a part time music teacher at two different public schools, a high school and a middle school. It was hard to work when I was still so sick, but I made it through somehow. There were days when I would be driving to work, realize I had forgotten a plastic bag and just open my door and vomit on the road while I continued to drive. Not fun (or safe).
After being back at work for only a few weeks, Aaron and I went in at 19 weeks for our big ultrasound to find out the gender of our baby. We were soooo excited! Our anticipation was strong. I remember posting as my facebook status that day "Deanna can't wait to see what we find out at today's appointment." Very ironic, considering after our doctor told us that we were going to have a little girl (yay!), she also told us that our baby had two large cysts on the back of her neck.
She tried not to alarm us by saying it was probably nothing, but that we should go to the high risk pregnancy center at the hospital to get a more detailed ultrasound to see what was going on. She said that it could be nothing, or it could be a marker for something much more serious. She finished the appointment by telling us not to go home and google what the "something more serious" could be. I remember leaving the appointment in my own car (Aaron and I had come from our respective jobs and met there) and calling my sister. All I could get out was "There's something wrong with my baby" and crying. I was devastated. I didn't know what was wrong, I was just so blown away by the possibility. I wasn't expecting at all to find out something like this.
That was a Thursday and our appointment with the high risk center was that coming Monday. Being such an impatient person, the suspense was killing me. I was imagining the worst. The next day at work, I was teaching a first block class and it was so bad at one point, that I just had to walk out on my class and take a short "time out" in my office because I was crying and didn't want to cry in front of my students. I made something up so my students had no idea that I went to my office, cried my eyes out and then returned to cheerfully finish the class period.
Monday, at the high risk appointment, we had another ultrasound and we had to meet with a genetics counselor- Dr. Brown. He took Aaron and I back through a winding hallway to a conference room, sat us down and talked to us about the "options". He said that because of the cysts (the second ultrasound had revealed 4 instead of 2) there was a 1 in 2 chance of something being seriously wrong with our baby. The top two choices were either Down Syndrome or Turner's Syndrome. He recommended that we get an amniocentesis done to see for sure. He had a somewhat depressing personality, and although I'm sure he is extremely intelligent, he did not have much of a "bedside manner" which everything he said seem that much worse.
Aaron and I went home and discussed getting an amnio. We had told Dr. Brown no because of the risk of miscarriage, but he said all we had to do was call back if we changed our minds and they would fit us in. I remember going home and being so extremely upset. I felt so out of control of my life at that moment. I didn't want to talk to anyone about it- I didn't even want to talk to Aaron. I walked out of the house and just kept walking. I wasn't trying to run away. I simply didn't know how to vent the frustrations and feelings that I was experiencing. This was all happening inside of me. Surely this was somehow my fault. A part of me hoped that this was just a mistake. Another part of me knew something was wrong- had suspected it from the beginning of my pregnancy.
After being picked up by Aaron driving through our neighborhood until he found me, we discussed further getting an amnio and decided that for our sanity and peace of mind, we had to go for it. I knew I wouldn't be able to sleep a wink for the rest of the pregnancy until I knew for sure either way.
We went in for the amnio pretty much the next day. They scheduled me in right away. I called in a sub for work so that I could go on bedrest the rest of the day. The amnio procedure is awful. It involves a needle being inserted into the sac where the baby is to draw out some fluid to test for abnormalities- enough said. Aaron for some reason wasn't sure if he was going to be able to come because of a work obligation, so I asked his cousin Kristen to come hold my hand, which she graciously did. Aaron did end up coming, just a little bit late, and it was nice to have the added support. The procedure was short albeit painful, but the hard part was really what was next- the waiting.
I don't remember exactly how long we had to wait. I think it was a week. I had called and left a message for Dr. Brown on the day that he said that he would call us back with the results, waiting for that call to tell me that everything was OK- that they had scared us for nothing. That call never came.
I left work around 3pm, running out the door a few minutes early since I don't get cell phone reception in my office, and I didn't want to miss his call. When I reached my car, I saw that I had a message from him. He said that he needed to talk to me but was just now going into a dentists appointment and he would try back again when his appointment was over. He revealed nothing in the message, but his voice sounded grave.
I drove home, trembling, waiting for my phone to ring. Forty five minutes later, it finally did. It was Dr. Brown. His first words were, "I am very sorry, but the test came back positive for Trisomy 21. Your baby has Down syndrome." In the same tone of voice that one might say "I'm sorry, but your baby died." He kept talking, but I didn't hear anything else he said. He kept asking if we wanted to come in to talk about it, but I knew for a fact we didn't. We didn't want to hear our "options" again. We didn't have the amnio to terminate the pregnancy if something was wrong. I for sure didn't want to hear his depressing voice keep saying "Trisomy 21" and "I'm so sorry" over and over again.
I was home alone and my heart was broken. I called Aaron to tell him and he came home soon after. I just remember crying and crying. There had to be some mistake! I kept expecting my phone to ring again with Dr. Brown saying that he was sorry, he had mixed up test results, of course our baby was perfect! But that call never came either. That night was the first time I have ever seen my husband cry. We cried together- for the perfect baby that we had "lost" and for the unknown of having a baby with Down syndrome. Neither of us knew very much about children with Ds.
Those next months were the hardest months of my life. I couldn't talk about it without breaking down and sobbing, so I did a lot of my communicating via the computer. I didn't even call my own Mother for weeks. I just couldn't deal with the grief of others on top of my own. If they wanted to cry, fine, it's just that I couldn't be the one having to do the comforting. I received some very sweet notes from friends- people I hadn't heard from in years. The notes flooded my facebook inbox. Those notes got me through those first few weeks. People saying I was blessed, had been chosen, that Addison was still perfect.
Someone sent me the "Gifts" book relating stories of other parents who had been blessed with children with Ds. I read this faithfully, but it still didn't stop the grief. For two months straight, from the moment I got home from work to the moment I finally went to sleep- I cried. I cried more in those months that I have the rest of my life combined. I found that I didn't want to be alone. When I was alone it all became real. When I was around other people, I could pretend that everything was normal- that this nightmare wasn't actually my life.
I felt as though this was all somehow my fault. I felt as though people were looking at me and thinking that something was wrong with me that I couldn't have a "normal" baby. I remember thinking that perhaps Aaron or his family would be sorry that I had married into their family because I possessed bad "genes". When people would tell me that it wasn't possible that my baby had Down syndrome because I was only 25, it made me feel like "What in the world is the matter with me that this is happening to my baby?" What had I done wrong to deserve this? It didn't feel fair. I felt like a defective Mom.
It was so awkward being around people at first because they didn't know what to say to me. Silence hurts much worse than perhaps saying "the wrong thing", because silence shouts judgment and pity. I just needed a hug here, a smile there, and normal behavior. Most of all, I still wanted people be excited about my pregnancy- to continue asking normal pregnancy related questions and not look at my growing belly as though it was a giant mistake.
I was afraid that I wouldn't love my baby. I would never dream of aborting my baby, but I did pray that God would intervene. I used to desperately pray for a miscarriage. I felt like dealing with my baby dying would be easier than picturing the horrible life I had ahead of me- having a daughter who would be mentally retarded and all of the stereo-types that accompany such an image. I would feel her kick and move inside me and would resent it. This wasn't my perfect baby. This was some monster growing inside of me that I was stuck with. I remember driving my car one day and just hoping that another car would hit me so that I would lose the baby and the nightmare would go away. (Judge all you want, but until you have been there, you really have no idea)
I could say more, but I'll stop there. That really was the darkest time in my life.
I don't remember the exact moment things started turning around. I think it was when I kept continuously having pre-term labor symptoms and had to keep going back into the hospital onto the labor floor. I got to the point where I was excited at the though of meeting my baby and started thinking about her as a baby and not as a syndrome. I got to the point of acceptance. The unknown still scared me, but when I thought I might have her at 25 weeks and then at 30 weeks and so on and so forth- I realized that I wanted her. I didn't want her to die. I wanted this baby no matter what. This was the baby- the gift- that God sent me. I didn't understand it. I didn't like it. But I accepted it. I got to the point where I could talk about it again; where I could look forward to meeting my daughter. It really helped when the people around me started being excited for me again- throwing baby showers, sending sweet notes in the mail, giving outfit after outfit of adorable baby clothes that would make any baby proud. Also- time helped heal the wound. I am so thankful that I was able to grieve before the birth of my sweet baby, although it made for a super difficult pregnancy.I also got to the point of trust. Trust that this was God's plan all along for my baby. Trust that He had created this baby perfectly and just for our family. Trust that GOD DOES NOT MAKE MISTAKES. Blaming myself for something that God sovereignly ordained- waste of time and energy. How foolish to think that I was responsible for the work of our Almighty God.
This doesn't mean that the pregnancy from then on out was easy. I remember doctor's appointments where instead of preparing a birth plan, the doctor tried to prepare me for the high chance of a still birth. Or, another bad moment- when the doctor asked me if I wanted medical intervention for my baby if she needed it at birth or did I just want nature to "take its course". The kicker was when she said "That's what we ask all parents of handicapped children".
I got to the point where I would stop telling people that my baby had Down syndrome because everyone would always stop congratulating me on the pregnancy and say instead "I'm sorry." This was all hard enough without having to deal with the "I'm sorry"s. I was having a baby! Be excited for me! I wanted to yell at times. This is the perfect baby for me and my husband.
Jump forward to January where I was put on bedrest at 36 weeks because of high blood pressure- going to the doctor's three times a week for non-stress tests....jump forward to February 5th when they finally decided to induce me...jump forward to 31 drug free hours later when I finally had my perfect baby. (I choose to have a natural birth so that Addison would be more alert to breastfeed after she was born. Sadly, they didn't let me try to breastfeed her until she was 3 weeks old)She came out screaming as if to announce to the world "Here I am....watch out!" After a few minutes, she started to turn blue. Her daddy was right there with her the whole time. I got to hold her briefly right after she was born and right before they took her to clean her up...but really, that hold doesn't count since it had to be kept very short due to the fact that she was slipping from my grasp.
They decided to put her on oxygen and take her to the NICU to figure out why she wasn't able to keep her color without oxygen help. They whisked her away before I got a chance to properly meet her and Aaron followed close behind. Next thing I knew, I was alone in the room where I had just labored for 31 hours. I looked around the empty room and thought, "I think I just had a baby. Didn't I?"I remember my mother-in -law coming in and telling me that she was proud of me and that they had seen Addison while they wheeled her by on the way to the NICU. After she left a NICU resident came in to give me a garbled update- pretty much interpreted "We don't know what is wrong, so we're just going to keep guessing".
Aaron came back in, and I was wheeled down to recovery- with empty arms.
It was 2 in the morning by the time we got down to our room, so we tried to sleep. It wasn't until the next morning when Aaron wheeled me up to the NICU that I really got to see my daughter for the first time. She was covered in wires and tubes, but she was beautiful. The nurse let me hold her, although I found out later that the nurse got in trouble for moving Addison. I was so thankful because it was a couple of days until I got to hold her again.
Basically, they didn't really know why she was responding this way. They had done an echo on her when I was 22 weeks pregnant, and had determined that her heart looked fine. They did another echo when she was a day old and discovered that her lungs had extremely high pressures. They thought that could be because she was so puffy and fluid was pressing down on her lungs (she was born with a lot of extra fluid) or maybe holes in her heart that they were waiting to close up. Basically, everyone had a different theory that they told us.
They also discovered that she was born with transient leukemia and had a very high conjugated biliruben. Because with any movement at all her numbers shot down, they wouldn't let me try to feed her, so she had a feeding tube alternating between her nose and mouth. (this is why they did surgery at four weeks to put in a g-tube) They put her in an isolation room and she did not look good. Nobody knew why she was responding the way she was and they didn't know what to tell us.
Basically, the first five weeks of our little Chubbs' life were very hard. Addison needed a lot of machines just to keep her alive. One night we got a call in the middle of the night saying that she had a cut in the back of her throat from the feeding tube and she couldn't stop bleeding so they were trying a blood transfusion to help her blood clot and just wanted to let us know. One day, they were going to intubate her to try a new medication saying that if they intubated her, it would probably months before she could come home. It seemed like it was thing after thing was wrong and that we would never be able to bring her home. We discussed me going back to work while Addison was still in the NICU since it looked like she might be there until the end of the school year (Feb-June).
Day after day of sitting alone with her in the NICU as many hours as I could be up there- I learned how to care for my daughter best I could. I learned to change a diaper around a lot of tubes and machinery. I learned how to take her vital signs and how to set up the feeding tube. I knew what all of the numbers meant on the screen and where the stickers needed to go on her chest to read just right. I knew which wires I could detach to pick her up and which ones needed to stay. Night after night I left her there in the care of the hospital and came home to sit in her beautifully decorated, empty nursery.
I would breast pump in there while looking at pictures of Addison. Those of you who might complain about having to get up in the middle of the night to feed your infant- try getting up in the middle of the night to use a pumping machine....not as cuddly for sure.
Aaron and I grew a lot during this time. He would go up every night after working a full day and read her at least one bedtime story and just touch her arm or head and talk to her. Often he would fall asleep next to her bed and not come home until hours later.
Did Addison surprise everyone by being well enough to come home after only 5 weeks? yes. Did she become strong enough to eat on her own and get rid of her mic-key button after only four months (the dct said she would need it at least for a year) ? yes. Did she go to Boston to have heart surgery and come home with renewed energy a short two days later? yes. Has she wrapped her chubby little self around our hearts, forever changing our lives and the way we love? yes.
What am I ultimately trying to say? God is good. He is good all of the time. Because while I had fearful introduction to becoming a first time Mom, it was all part of His plan for my life. God was still good throughout it all. He protected the life of my daughter, He grew me personally, He strengthened our marriage, He provided for our every need even though I had to take a lot of unpaid time from work- He took care of us in every way possible. This was a hard path, but God provided the grace to make it through this difficult time.
The good news? Two surgeries, many many doctors appointments later- I have the most beautiful and perfect daughter in the world living here at home with me. She is still on oxygen, but we have just learned to live with it. We are hoping to get rid of it here within the next few months. Addison is doing so wonderfully on and off the oxygen! (I have started my own weaning process for her) She is a healthy, chubby little girl who delights on getting into trouble and smiling heart melting smiles.
I could write so much more about our experiences and about our beautiful daughter, but I will stop since this is already sooooo long. I just want to express how completely Addison has stolen my heart. When I was pregnant and not sure if I would love her- I wish I had an inkling for how amazing my daughter would be and how much good she would bring into my life. When I thought about how much my life would change, I had no idea that it would change for the better. When I cried, thinking about the concept of my "perfect" baby dying- I had no idea that I was just defining the word 'perfect' incorrectly.
Addison Lynnette Smith is the best daughter than any mother could ask for. Has it and will it continue to be hard at times? Absolutely. But that is what parenting (and life) is all about. I thank God every day for Addison. I wouldn't change a thing about her.
...and that is Addison's story...the beginning of it anyway...I know she will continue to surprise and amaze us! I love you, Chubbs!
Updated: November, 2010 Addison finally came off of oxygen (-: Read about it here.
Updated: November, 2010 Addison finally came off of oxygen (-: Read about it here.