Friday, July 08, 2016

I thought I was ready-Diagnosis

I thought I was ready to share our diagnosis story with you all, however, I find myself holding our story close to my heart. I try to convince myself that people aren't ready to hear what I have to say but I think the reality is... I am not completely sure I am ready to be that vulnerable. With prayer and courage I am going to try.

 One of my favorite woman phrases it this way:

I am willing to take a risk for the sake of connection. If this touches just one woman/man/soon-to-be-mother/soon-to-be-father/grandparent/sibling I am willing to put myself and my family out there.

When I got pregnant it felt like a whirlwind. We only had to try once and boom we were pregnant. I had morning sickness and I started eating the greasiest food I could buy. I started gaining weight and hated being pregnant. I actually hated when people asked me about being pregnant more than the side effects. I have major self-esteem issues and when my body started to change so much I couldn’t keep up and wanted it to be over. I found myself wishing away the pregnancy and counting down I would have my body back. All of that changed at our 20 week appointment. We found out we were having a little girl. On one hand I was so excited we were having a girl and then on the other I was terrified of how to raise a little girl. Mike was in love. Goo-goo eyes pressed on the ultrasound as tears filled his eyes. He loved our baby girl in an instant. I remember I didn’t want the ultrasound to end, I wanted to see her. I wanted to see how she moved and her little hands. Mike had to rush back to work immediately after the ultrasound. I had to return to our OBGYN’s office to discuss the ultrasound and then I was headed home because it was my day off. I was overwhelmed with excitement of the news we were having a girl. I could not wait to tell our families and live in the joy of their reactions.

My doctor came in to the room excited and funny as always. She talked to me about our baby girl but mentioned they saw a calcium deposit on her heart. She explained we would need to get a Diagnostic ultrasound done at our next appointment. Dr. Ashmun repeated over and over, “Do not worry. Please do not lose sleep over this. Often when Calcium shows up on the ultrasound it clears up before the baby is born.” I wholeheartedly trusted my doctor and did not worry about the calcium. Once I left the doctor’s office I called Mike and explained what Dr. Ashmun said and he started throwing questions at me like a batting practice machine. I assured him over and over that is was nothing and we need not worry about it. Once I got to work I even sent him several links of other people’s experience with the calcium deposit. That night we told our parents about our little girl. My mom, in all her excitement, screamed over the phone.  My mom doesn’t get excited about many things, but us having a little girl made her heart leap with joy. My dad’s response was, “A little Sis” and he started crying. My parents have called me Sis since I was a little girl and I am sure they will call our little one the same thing.

I began feeling more connected to the baby that was growing in my belly. I didn’t feel like she was a foreign object anymore. She was a SHE and we could name her and she would be half of me and half of Mike. We lived blissfully in the next 4 weeks. I finally started to love the idea of being a mom. I longed to hold our baby. Mike and I started discussing names and we were down to three; Aurora, Louisa, and Eloise. After days of going back and forth with names Mike finally agreed to Louisa Jean Riley. My baby’s name is Louisa. I imagined our life over the years and the nicknames we would call her. I smiled every time I thought about her growing up with Mike and me as her parents. I imagined her having dark hair and dark eyes like we have. Unless she comes out with red hair, she has no hope for any other eye and hair color. 

I started getting bigger and my clothes became tighter and tighter. I worked out as much as I could manage and tried to eat better than I had been. Mike and I forgot about the calcium deposit and the diagnostic appointment until a couple days before our appointment. We were living in the presence of joy for our little one. The morning of April 11th Mike and I were running late. I don’t think we had shown up to an appointment on time once during this pregnancy. After waiting for an hour and a half I was finally called back and the nurse asked me questions, without Mike in the room, and then she called Mike back and we went into the ultrasound room. I was impatient and annoyed with the amount of time we had to wait, little did I know what was to come. 

We got to see our baby girl again. She was beautiful and looked huge to me on the screen, although she only weighs 1.5 pounds at that point. I imagined myself pushing this human out of my body and shivered. The nurse was very kind and took lots of pictures. The Doctor entered the room and he was kind but seemed distracted. He sat down next to the nurse and asked me a couple questions. He then asked the nurse to zoom in on a couple places of her body. One of those places was her heart. The doctor then said a bunch of words that seem like blurs now. Through the medical jargon I heard him say she has a Heart Defect and it will require open heart surgery. Hot tears filled my eyes. There must be a mistake, I couldn't have heard him right, but just then Mike started asking questions. I did hear him correctly, Louisa will need open heart surgery. 

I am so thankful for my husband because when hard news hits him he can still sort through his thoughts. The Doctor explained again that she has an Atrioventricular Canal Defect. We will have to monitor the severity of the hole and we would need to schedule an appointment with a Pediatric Cardiologist.

I could not control the tears anymore. My heart sank deep into my stomach. I began questioning things I had done as a pregnant woman. What if I took too hot of showers? What if I eat too much fish? What if it is because I forget my prenatal vitamins sometimes? Just then, the Doctor broke my trance and looked at me in the eyes and said, “There is nothing you have done to cause this. Sometimes this just happens.” I began to weep. Mike was holding me close and I felt like I couldn’t breathe, what have I done? I felt heavy. The doctor then told us several times we needed to have blood work done to test for Down syndrome. We agreed to get the bloodwork done downstairs and then head over to our OBGYN. Our blood test was called the Harmony; Dr. Mulligan said it is a 95% accuracy rate for testing Down syndrome.

We arrived at Dr. Ashmun’s office (OBGYN) and I felt like a glaze lay across my face. Mike and I both were just still and silent. I cried and he held me close. When he looked at me it felt like he was saying, “I don’t know what to do, but I am here.” I loved him and I loved our little baby. I didn’t want her to be broken or wounded. I wanted her to be healthy and safe. Dr. Ashmun arrived to us and talked a little more about the findings from Dr. Mulligan and she said we were in good hands with the Cardiologist we would be seeing the next day. Dr. Ashmun wrote down her cell phone number and made us promise that if we weren’t sleeping and couldn’t turn the worry off that we were to call her. She has three boys, there is no way I am going to call her in the middle of the night, and she is a doctor for goodness sake. I am still thankful for her though. She didn't have to open herself up but she did and I am so grateful she did.

Mike had to go back to work and I was off so I went home and waited for my mom to call me. When she did I could hardly say the words without forcing them out of my chest. I sobbed and tried to catch my breathe. My mom cried and listened. She asked if she needed to come to Lexington to be with us which was sweet but there was nothing she could do to make it better even though I know she wanted too.

My mom suggested I go on a walk or something to get out of the house but I couldn’t move from the couch. I was scared to move, scared to do anything. I didn’t want to hurt Louisa. I laid there on the couch and cried. Our puppy, Jackson, lay next to me on the floor. My heart felt heavy but numb. I cried every time I looked at our dog. I cried every time I thought about our little newborn having open heart surgery. I cried when I looked at my husband. I cried when I looked at Louisa’s room.

Tuesday April 12th Mike and I met at the Pediatric Cardiology department. For the first time in the entire pregnancy we were both early to this appointment.  I felt pale and like I couldn’t possibly cry another tear. Mike looked like he was holding it together on the outside but I knew his mind was going round and round. We were called back into the room where we met our Cardiologist. Her name is Dr. Cottrill. She is 71 and in a wheelchair due to a spinal disease. She explained exactly what she would be doing and began asking me questions. My mind was foggy and I couldn’t think clearly but I tried to answer the questions as clear as possible. 

The ultrasound tech nurse was sweet and laughed every time Louisa turned around and tried to hide from the ultrasound wand in my belly. Dr.Cottrill said she would be a dancer. Our little pea, apparently, doesn't like ultrasounds. I laid there with tears streaming down my face. I wanted to be the one sick not her. I was scared and angry. Mike came close to me and held my hand tightly. We watched the monitor closely as if we knew what they were looking at. Louisa’s heart was smaller than the size of a nickel truly I was amazed they could even see anything. 

Once the ultrasound was done Mike and I sat patiently together ready to fire questions at Dr. Cottrill. She told us basically the same information that Dr. Mulligan told us the day before. Dr. Cottrill is a Christian and it was very obvious she was passionate about her work. She gave Louisa her first book, which was a Congenital Heart Defect book, not what I had in mind for a first book but HEY, dreams…Am I right?

Dr. Cottrill explained the Atrioventricular Canal Defect is a way Mike and I could understand. If our little one was going to have a heart problem the AV Canal Defect would be the one we would want. The repair for this type of defect is successful and surgeons have been performing the repairs for over 50 years. We asked our questions and she patiently answered each one. At one point Mike said, “What if she does have Down Syndrome?” Dr. Cottrill’s reply was, “then you will love that baby and be her biggest advocate.” 

That night Mike and I sat on the couch together and just stared at each other in silence. We were both exhausted from crying and thinking. We eventually fell asleep for several hours and both woke up still feeling really heavy. Our good friend Lauren Greenman stopped by with flowers, listening ears, and kind words. Lauren is studying to be a Physician’s Assistant. She and her husband have been great friends of ours for 3 years. Something Lauren said that night that struck both Mike and me was, “A lot of things have to go right during pregnancy to have a healthy baby.” We were both taken back. No one had said that, but it was true. Many people take for granted healthy pregnancies and babies. This idea will come up time and time again throughout the next several months.

Monday night April 18th I got home from Bible Study Fellowship and got ready for bed. Mike finally got home and came upstairs to find me lying in bed (which I did often because I am pregnant and my legs, back, neck, eyes, fingers, elbows, everything hurt). He lay beside me. He said, “Hilary, we need to talk, Dr. Mulligan called me today. They found Trisomy 21 in your blood. Louisa has Down syndrome.” In the nature of honesty I literally said, “Are you lying?” To which he replied, “That would make me the worst husband ever.” When I realized he wasn’t kidding, a huge lump formed in my throat. Tears marched their way into my eyes and down my face. I wanted him to say he was joking and she was fine, but he didn’t. I looked at him expectantly like why are you not telling me you are joking?

Mike just stared at me. I couldn’t breathe. I just kept repeating, “They are wrong. They are wrong. Mikey they are wrong.” His eyes filled with tears. I think he would tell you that experience was probably the most difficult thing he ever had to do in our marriage. His heart was being ripped out. He wanted to save me and his daughter from this pain and there was nothing he could do. He just had to watch me unravel. My strong and powerful husband was forced to tell his already fragile wife that our little girl had Down syndrome. We were vulnerable and broken. We lay in bed staring at each other because that was the only comfort we could receive.

The next day was by far harder than the night before. Again, I was forced to function. I had to get out of bed and go to work in my office. I had to work next to people that asked me about being pregnant on a daily basis. I called my parents that morning to tell them about the news. I couldn’t say it without crying out, “Louisa most likely has Downs.” Both my parents cried and cried on the phone. Their once joyful hearts for this little girl were just as scared as I was. I got to my office and could not stop crying. I shut my office door and just sat staring at my computer. I called Mike and all I could say in a weepy voice was, “I don’t think I can do this.” He came over, brought me coffee, and just sat with me in my office. He didn’t cry but his presence was the strength I needed to keep going. I didn’t want to eat. I didn’t want to work. I wanted to have the privilege to crawl in a hole and hide.

The grieving process began. Mike and I would grieve our expectations at different times. Prayer was difficult, worship was almost impossible, and joy felt like it was a lifetime away. I couldn’t look at babies and I know that is an odd thing to say. It wasn’t fair that my baby girl wouldn’t look like them. She would be recognized in society as less than or as not capable of xyz. I told my friend, “I am one bad news away from shaving my head and hanging out with the homeless crazies’ downtown.” That was how I felt. I felt like I was going to lose it. Smiling felt exhausting and laughter seemed impossible. Hope was a tiny flame inside my heart that would be extinguished every time we had an appointment.

This is the abbreviated version! Imagine what the long version is like. ;)

Someday I would like to publish the longer version and the entire story from beginning to end but I will wait patiently for that moment.  I will end this entry today with this; although our hearts really did feel this way and sometimes still do hurt we are in much different places right now. Mike and I are really excited to bring home this baby girl. Our excitement does not change what we have been through or how scared we are and have been.

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