Shortly after Annika died I began a journal. A journal that started with conception and is still continuing. This journal is how I reflect, remember and deal with the pain. I hope to share with others our journey. It is almost 20-pages long, single spaced. The part I have posted here is just a portion of it. I am excited to share it with you. It’s lengthy, but I hope you are able to understand the impact that families go through when they have sick babies. My heart goes out to those who have been there, know that you are not alone.
The Birth of Annika Noelle–
We were new at actually trying to conceive. We found out we were expecting after nine months of “trying”. We were both getting anxious. I would take pregnancy tests days before my missed period. It was just another month (April, 2010) when I decided to take a pregnancy test five days early, it came back negative. So, I promised myself I would NOT take another test until I was actually late. So, five days later when I didn’t start I decided to rush to the store for another test. I got off work and had to pick-up Grant, our then two year old, from day care. After I picked him up we rushed to Meijer. I bought the test and made a B-line to the bathroom. I put the test back into the bag and Grant and I headed back to the car. After loading him up I got the test out of the bag…it was positive! I was beyond excited. I had a smile from ear to ear. I proudly told Grant, “You’re going to be a big brother!” I couldn’t wait to tell my husband, Evan.
As I was driving I wanted to blow peoples phones up to tell them the exciting news, but I wanted to wait. I couldn’t tell anyone before I told Evan…and I didn’t want to tell him, or anyone else, over the phone. Before conceiving, I had planned out exactly how I was going to inform Evan of the news. So, to carry out my plan, I rushed home, grabbed a long sleeve white-T (of Grant’s) and with a permanent marker wrote on it “I’m going to be (front)…A BIG BROTHER (back)!” Evan was at his parent’s house, so I met him there with a big smile and the big news! Grant found his Daddy, who was extremely happy that we were finally expecting baby #2. When Mary Ann, (Grammy) saw Grant, she read his shirt and began screaming! She was more excited than we thought she would be. When we were finished informing the Horner’s we just had to go to my parent’s house and tell them as well. Later we found that Mary Ann’s excitement not only stemmed from our pregnancy, but earlier in the week she had learned that two of my sister-in-laws were expecting. She learned she was expecting three new grandbabies in a matter of days!
Adam and Emily (my sister-in-law and her husband) came over a couple nights later. When they asked how we were, we told them we were expecting baby #2, January 5th, 2011. Emily proudly announced that they were expecting January 4th. We screamed, hugged and then, went shopping for baby clothes. Emily and I sat in the car and decided we should tell Erik, Erin and Ethan (other siblings). When we called to tell them the exciting news, Erik told us that Korey was due January 1st! We couldn’t believe it!! We sat in the car, laughing, crying and screaming. We were ecstatic! Emily and I drove to my house and met up with Korey. The three of us stood outside for hours chatting about our pregnancies and how ironic it was we were all expecting babies in the same week.
I was about six weeks pregnant, when the dreaded morning sickness began. I felt nauseated all day, every day for about eight weeks; it then began to gradually get better. I had “morning sickness” with Grant, but, it didn’t seem to be to the same extent as it was with Annika. I tend to believe that it was because of where and what I was doing during the first trimester. With Grant, I was a nanny and when I wasn’t feeling well I was able to take it easy. With Annika, regardless of how I was feeling I needed to work. When you’re tired and nauseated it’s difficult to stand and proceed as usual. Co-workers seemed understanding at first, but it didn’t take long for irritation to set in.
The entire pregnancy I looked forward to mid-August, when I finally got to have an ultrasound. We didn’t find out the sex when I was pregnant with Grant, but I knew we would with baby #2 and I had Evan on board. I was excited to find out the sex of the baby so I could begin setting up the room and shopping for his/her clothes and other attire. When the appointment day came, my Mom, sister, Evan, Grant and I waited patiently to be called back. I’m not sure why, but, I wasn’t only excited, I was nervous. We waited and waited.
After an hour or more, we were finally called back. The technician began the ultrasound. Finally, we were able to see our baby. I was so happy, I couldn’t help but giggle. We were all smiling ear-to-ear, waiting to hear those three special words. “It’s a girl!” the tech informed us. Evan hesitantly asked her how sure she was. “Very confident!” she proclaimed.
Everyone left the room while I waited for the doctor to tell me “she’s perfect.” Meanwhile, I sent out mass amounts of IT’S A GIRL text messages. After the long wait the doctor and technician came back into the room. The tech and doctor began discussing the ultrasound, after a few minutes I began to feel nervous. I asked if something was wrong. Dr. Kersh explained to me that something about the heart didn’t look right to her and that they would be sending me to a high risk fetal development doctor for a second opinion. My eyes filled with tears, I was so scared. My body ached, I felt nauseated and I wanted to tell them they were wrong. I went to the front and asked Evan to come back, he was furious because of the ridiculous wait. He needed to get back to work. Dr. Kersh informed us that the left ventricle looked small and that we would need to get the second opinion as soon as possible. They scheduled us an appointment with Dr. Donald for one week later. The wait was long and depressing. I didn’t want to talk about it, I just wanted to cry. The fact that we knew something probably was wrong, but, we didn’t know exactly made things that much worse. I couldn’t focus on anything, I felt sick. I wanted answers. I feared the unknown.
Every day I was grateful that it was one day closer to my appointment, but when the day finally came I wanted to run. Sometimes, ignorance is bliss. I thought I had prepared myself for whatever it was the doctor would inform me of. I had Mary Ann and Evan there for support. After the ultrasound he informed us that what he saw what was originally seen, something peculiar. He also informed us that our baby had two cloroplectic cysts on her brain. These cysts are not generally a concern, but, because they were paired with the heart there were chromosomal concerns. My heart sank; there was a knot in my stomach. We can fix the heart, but the brain? I was so in love. I felt her move, I saw her, I knew her name…I didn’t know what to think or where to begin. He called us into a consultation room to discuss our options and where to go from there. I cried and asked a lot of questions. Evan sat quiet and worried. He thought about how we would concur everything that had just hit us. The doctor drew us pictures. He listed off malformations I couldn’t even pronounce. He seemed bothered by us; annoyed that we were there, annoyed by the crying and annoyed by the questions.
He recommended a procedure called the amniocentesis. This test would inform us of whether or not there was a chromosomal defect to worry about. He explained several types of chromosomal defects. The first we were familiar with, Downs Syndrome and the other two, Trisomy 13 and 18. Both of those would have likely resulted in death just after birth. We could have the test done that day or schedule for another day. Evan and I agreed, why wait? As Dr. Donald and his assistants prepped me for the procedure I became very nervous. I felt clammy and hot, my stomach aching. As they were setting up he tried to joke that that even Ray Charles could perform my procedure, meaning that baby was in a great position allowing a lot of room for the humungous needle. I just wanted silence. I was scared of the procedure, but, even more scared of the results. I wanted to escape from reality, from what was really happening. I always thought amnios were pointless, I would never get one. After all, abortion wasn’t an option for my babies. But this was different; we had to know what was going on before they would send us to Riley. Dr. Donald prepped my skin, one assistant handed him the sterile supplies, and the other did the ultrasound. I took a slow deep breath, and the giant needle was in. I thought the painful part was over. I looked at Evan for strength; his hands were placed over his eyes. The doctor began to pull the syringe up, the pain grew sharp. I closed my eyes and told myself how important the procedure was. I can do this, I continued to tell myself. When he was finished I felt relieved, I sat right up. I was thankful we were one step closer to answers. My stomach began to contract, I felt nauseated and things seemed foggy. I didn’t know what to say, think, or do. I sat down for a while longer, I almost passed out. Finally we were able to leave; I thought to myself, I hope to never step foot in this office again.
Again, it was a waiting game. The wait for the results was almost as painful as the wait for her to come out of her open heart surgery. I thought about things no mother should have to think about. I cried, I felt alone, sick and scared. I didn’t have an appetite and if you know me, you know that’s not like me. I was expecting a baby; I was in love with her. But, is she going to make it? Do I continue to do things that any other expecting Mommy would do? I was lost. At some point, I decided I would go insane if I didn’t pretend everything was okay. I was honest with myself enough to know that there was a long road ahead, but I just didn’t know what direction that road would take us. Finally, one day while at work, the phone was for me. Dr. Donald was able to give me great news, the chromosomal tests came back and everything was fine with the chromosomes! I was relieved that we had gotten a little closer to some answers. But, because of the heart issues, I would need to be seen in Indianapolis by a high risk OB doctor and a pediatric cardiologist.
September 10th finally came around. The drive to Indy seemed never ending. I was nervous, few words were spoken. Evan, Mary Ann and my Mom all joined me for the nerve racking event. We finally arrived at Clarion North. We first met Dr. Cordes, the pediatric cardiologist. He performed an echocardiogram. He explained to us that our baby girl had several congenital heart defects including: dextrocardia, unbalanced AV canal defect, transposed great arteries and pulmonary atresia. Dextrocardia is a rare malformation that means her heart formed on the opposite side, her heart was on the right. Often when this malformation occurs you may deal with several other complications. Often the stomach and intestines can be in the incorrect place, and there could be multiple spleens or no spleen at all. Pulmonary atresia is the term used when the valve orifice fails to develop, obstructing the outflow of blood to the lungs. To hear all of this tragic news broke my heart, but at the same time I was relieved to finally know what we were dealing with, and to know it was fixable. He informed us that she would need the Fontan procedure. The first surgery, a week after birth, consisted of the placement of a shunt, the second surgery, at six to eight months, was the Hemi-Fontan and the final surgery, the Fontan, would be performed at approximately two years of age.
We were then sent to a high risk OB at Prenatal Diagnostic. They performed a full body ultrasound. They checked her out from head to toe, measuring everything. They informed us that they were unsure if our baby had a stomach. But they also were able to give us good news. Her respiratory and renal system looked great. What a relief to know that some of her major organs were healthy. We then learned we would need to be seen in Indy every four weeks until her birth.
At this point my heart seemed to relax a little bit; after all, everything was fixable. There were no more guessing games as to whether or not she would make it…she would be fine, nothing that surgery couldn’t fix, that is. Four weeks crawled by and we returned to Indy, this time we were seen at Indiana University Hospital. I was a basket case because we were running fifteen minutes late. I called to tell them we would be late, we were unprepared for the traffic and weren’t sure where we were going. When I called, the receptionist said to me, “we will see if we can fit you back into the schedule.” Everyone in the vehicle was agitated. Evan and I were arguing back and forth as to who was right about where we were headed.
We finally found our way to Prenatal Diagnostic. We met with Dr. Meijers, the pediatric cardiologist who performed the echocardiogram. She was pleased with what she saw, meaning there were no changes. Often times, with all of the defects Annika had, it is not unusual to see fluid around the lungs or an irregular heartbeat, she had neither. Evan asked the question we all wanted an answer to, “is she going to be okay?” With a smile, Dr. Meijers replied, “I think she is going to be just fine.” Tears began to pour, what a relief! The ultrasound technician entered the room shortly after. She did the normal 2D ultrasound measuring and checking everything she needed to. And then, much to our surprise, she turned on the 3D ultrasound. There she was, my baby girl, my love. We all cried again. We all agreed that she looked like Grant, or maybe even Sydney (her cousin). I was able to feel excited about my pregnancy!
Another four weeks came and went. I grew more understanding as to what we were dealing with. We began to put together a plan of action. I continued to remind myself that she was fixable, that it was all worth it. As the end of November drew near, I had to begin appointments at Women’s Reproductive twice a week for non-stress tests.
At my last appointment in Indy we learned that I would be scheduled for induction on December 20th, 2010. We had toured I.U. and Riley Hospital. We were told about my steroid shots to improve lung development. Everything was in order. Now, all I had left to do was wrap some Christmas gifts, clean my house and pack some bags.
During a routine non-stress test, my midwife, Kristin Vincent, decided to check my cervix due to multiple contractions. Much to my surprise, I was 3cm dilated and 75% effaced. She contacted Dr. Schubert, my high risk OB, who instructed I come to Indianapolis right away. When I got the phone call it was 5pm. I was excited, no, I was nervous. But, I didn’t expect this I thought to myself. I’m not ready! My bags aren’t packed, who will take me, I’m not prepared for this– She’s safe here!!
After my bags were packed and I kissed Evan good bye, Tiffaney (my sister) took me to Dad and Mom’s. Mom, Grant and I went to Indy that night. We arrived at I.U. Hospital at 10pm. Dr. Schubert was there and was just finishing a cesarean, “he’ll be right in”, we were told. Hours later he came into tell us that it was a misunderstanding. No, there would be no steroid shots tonight nor would there be any baby for a couple of days, if he could help it. I was only 36 weeks pregnant and he didn’t want her that early. He wanted me in Indy in case of premature labor. I would receive my steroid shots the following Monday and they would induce on December 15, 2010 at 9am. Mom, Grant and I stayed in a hotel downtown that night. We arrived at 2am and decided we would figure out the details the next morning.
That next morning we took Grant to the pool, he had a blast. Mom swam with him while I sipped on coffee and checked my Facebook. After all, I was not about to put on a swimsuit! I started feeling pain, in my left kidney. I thought it was probably back pain due to nine months of pregnancy. The pain grew intense. The pool was dead, so, I decided to slip into the hot tub in my bra and underwear for some much needed pain relief, I was willing to do about anything for pain relief. The pain continued to get worse. It’s a kidney stone (I have a history of them), I thought. We all hustled back to the room, threw our things together and made the decision to go to the hospital. I went directly to labor and delivery. It was Wednesday, December 8th at 10am. I told them about the intense pains. I knew it was a kidney stone. Hours later, they were able to get me some pain medication. After hours of pain, I was finally comfortable! I was able to leave the hospital Thursday evening.
I spoke with a good friend of mine, Mallory, about staying at her place so that I was close to the Indianapolis area, “just in case.” She was fine with that and happy she could help. She came and picked me up from the hospital that evening after work. What a great friend I have in her. She opened her home to me, even giving me her bed! We made ham and bean soup the first night and had a great time catching up. When Friday evening came we made plans to go to dinner and to go see a movie. We enjoyed a nice meal at Granite City. While sitting there I began to have severe back pains, once again on the left side. The pain grew quickly. Another kidney stone, really? When we arrived at Mal’s apartment I slipped into a hot bath for some pain relief. I did not want to have to ask her to take me to the hospital, but after some consideration in the tub, I knew that all I was doing was putting it off. She quickly agreed that we needed to go to the hospital. So, Mallory, her roommate, Syjon and I headed to I.U. Hospital, Labor and Delivery. This wait was a bit shorter than the last one, because we knew what it was. Finally, relief!
The pain and agony of a kidney stone is unreal. The pain begins somewhat dull, but, within minutes it gets severe. Two stones, back to back on top of being less than a week from child birth, just isn’t fair! Evan and Grant greeted me at the hospital the next evening; I was able to leave the hospital yet again. I still had not passed the stone. But, we enjoyed a nice, relaxing night at the LaQuinta hotel. Evan took Grant in the pool while I sat and watched. It was so nice to be with my boys! I had missed them so much, after so much pain, agony and stress, I had a hard time letting go of them!
The next few days I stayed at Mallory’s, anxiously awaiting the induction of my baby girl. I drove to IU Hospital twice to receive the painful steroid injections. I had passed the kidney stone and I was feeling good, but, my anxiety was at a maximum because I was scared to death. I was scared of the induction, child birth and scared for my baby girl’s life.
Finally, the day had come. I was going to meet my baby girl, the daughter I had longed for.
I arrived at Indiana University Hospital at 9am for the scheduled induction. After signing paperwork, weighing in (32lbs gained), getting hooked up to the monitors and getting the IV placed, I was ready to roll. The doctor checked for dilation before we began and much to my dismay, I will still at 3cm. At 10am my nurse, Robin, started the Pitocin, upping the amount every couple hours. After a couple hours I began contracting. I tossed and turned, attempted to nap and twisted my hair as I anxiously waited for the contractions to become intense. The contractions became regular and grew stronger as time went on. The doctor came in to check on progression. 5cm. I couldn’t believe after all of the laboring I had done that I was only 5cm! At 4pm the doctors decided that it was time to break my bag of water. I knew that things were about to get really forceful. It is time, it is really time to have my baby, I thought to myself. I began to panic.
I chose not to receive an epidural when I was in labor with my son Grant, and I was just sure that I wouldn’t need one the next time around. The doctor headed back in to check my progress, still I was 5cm. After getting discouraged, I decided that the epidural was the right thing for me. I began to worry about the epidural. Was it going to be extremely painful? Would I be injured forever if they mess up? Will this make my baby sleepy and there for lower her oxygen saturation? I was even disappointed in myself for needing it, after-all, I made it without previously. Will I end up in the operating room? My hands were clammy and even breathing began to feel like a chore.
The anesthesiologist entered the room. I was showed how to sit and what to do while he inserted the needle that would place the epidural. Never having an epidural before, I didn’t realize how difficult it would be to sit still during an agonizing contraction. He pricked my skin to numb the area that we would be working in. After that, there was no pain inflected upon me due to the epidural. He began to secure the epidural into position. I knew he was finished and I was relieved. After a moment my feet began to feel tingly, and even my legs. I couldn’t wait for it to kick in and take the pain of my contractions away!
I rolled around in agony. It’s not working. IT’S NOT WORKING! The nurse got the doctor to check me and paged the anesthesiologist to check my epidural. The doctor walked into the room to check me. He stated, “We are going to have this baby, right now!” “Don’t push” he exclaimed! He hollered around for more staff. “We need nurses and the docs from the NICU and surg, STAT!” I become so nervous, but excited to meet my beautiful girl. I prayed, “Lord, please don’t let anything happen to her.” Meanwhile, the doctor had set everything up and we were ready. All of this happened in seconds! He asked me to push. “One big push”…and he tells me “holllld it….now give me a little more…” Annika Noelle was born at 8:05pm, weighing in at 6lbs, 7oz and measuring 18 ½ inches. The sound of her healthy scream made us all cry- it was unexpected; it filled us full of promises and hope. I could not believe how beautiful she was; I just knew that she was going to be okay. Dr. agreed beforehand to put her on my belly as Daddy cut the umbilical cord.
Seconds later doctors and nurses shuffled around us. They grabbed my baby from me just seconds after she arrived in my arms. They wrapped her up in a sterile blue towel and took off to the “Island” for evaluation. Months before delivery I dreaded her being ripped from my arms, but, when the actual time came, I was somehow okay. Maybe it was hearing her cry that filled me with hope, but it was definitely the strength God gave me to push through. Of course I wanted to sit there, stare at her, hold her, nurse her and talk about how much she looks like her big brother. But, that wasn’t reality for us.
I had a tiny tare that didn’t need to be repaired. The nurse cleaned me up. I was actually smiling at this point. Her cry was promising. My next thought had been on my mind for hours, I was hungry. I hadn’t eaten all day! Days before I made no-bake cookies. While I was waiting to see my beauty seemed like a good time to devour a cookie! While she was gone, the doctor and nursing staff would come in to inform me of her status. They hooked her up to leads and listened to her heart beat. She was doing better than expected! The doctor who delivered her even took pictures for us and brought them to show me. I was all smiles.
About an hour after delivery and some evaluation the NICU team rolled her to the birthing suite, where we all “oohed” and “ahhed” over her. Grant was able to meet his little sister. We all touched her fingers and rubbed her head, telling her “we will see you a little later.” The NICU staff then rolled her over to Riley Hospital for Children.
I was in a hurry to get over to see her, but, I wasn’t allowed to leave until I urinated. Due to the epidural, urinating was not an easy task. I told my nurse, Brittany, that I was able to walk to the bathroom. Believing me, she helped me to my feet, which were still numb. I placed one foot on the ground, tapping it to make sure I could stand; I then placed the other on the ground. My feet were numb, but I could see them on the ground…so, I began to stand. I fell right to my knees. It’s crazy, if your feet are numb, you cannot walk! Needless to say, I had to sit for a bit longer, until I could walk and therefore, urinate.
A few short minutes later, a doctor walked in with the phone, informing me that it was for me. The doctor on the other end informed me that on the way to Riley, Annika began to have trouble breathing, and they had to intubate her. I told my nurse that I had to get going, after the news that I received, I NEEDED to go be with my baby. I was upset that she started doing worse, but still, I knew she was going to be okay. Her problems breathing were expected, and intubation was expected as well. Brittany quickly helped me to my feet. Luckily, I was able to walk with assistance. I sat on the toilet, trying to urinate. It’s hard to urinate when your muscles have been numbed, but, after a long time of trying, it finally happened.
I got in the wheel chair and was quickly pushed to the Riley NICU. After standing with her, and admiring her for quite some time, I decided I should probably get some sleep. Evan and I went back to the hospital and our families went to nearby hotels. I was exhausted, but not having her with me made it difficult to sleep. I was on a mother-baby unit; I heard the cries of newborns, the laughter of family and friends, I saw the nursery…I felt alone in a hospital full of people.