Amelia

On November 24, 2008, God blessed us with our little miracle, Amelia Elyse Olson. She weighed in at 8 pounds 11 ounces and was 22 inches long. I will never forget that moment, shortly after 9:47pm that we looked each other in the eyes. I had an overwhelming feeling of excitement, joy, elation. For 40 weeks and 5 days my body sheltered this little girl and now she was here for the world to enjoy - no longer just mine.
We knew Amelia had a congenital heart defect called atrioventricular septal defect (AV Canal defect, endocardial cushion defect). It was diagnosed (and later confirmed through an echocardiogram (ultrasound) of her heart, in-utero) on June 27, 2008 during my "regular" anatomical ultrasound. The day started out full of excitement - we were going to find out the "flavor" (as I called it) of our little Peanut. I was nervous and excited....I thought FOR SURE the baby was a boy. I wanted a boy - and then the sonographer asked if we wanted to know what the baby was - after John and I both said "yes" - she announced that it was a girl! For a second I was shocked and then I got really excited. Then the sonographer continued to look around and kept focusing on the heart. We really didn't think anything of it, we had never been through an anatomical ultrasound before. She said "let me go get the doctor" and we still were not worried. It was not until Dr. Puder (a doctor at Huron Valley Sinai) looked at the images and broke the news that she highly suspected that our daughter had a congenital heart defect and explained AV Canal Defect. The next blow when she told us that 50% of babies with AV Canal had Down Syndrome. Another punch to the gut. My heart sunk, my stomach dropped, I didn't know what to say, what to think. What did this all mean? Was my baby OK? Would she be "normal"? Would I be able to hold her in my arms? Dr. Puder proceeded to tell us that she would perform an amniocentesis if we would like to know if our daughter had any genetic abnormalities, including Downs Syndrome. We both said yes, as we would want to be prepared. We waited two hours while she finished with her other patients and all we could do was cry. We both called our parents and shared the news. Between the two of us, we have three nieces and one nephew and all four of them are perfectly healthy. We knew NOTHING about heart defects. Frankly, nothing like this had ever crossed our minds. We just assumed our baby would be perefectly healthy.
I couldn't believe at 26 years old I was having an amnio. I wasn't scared or nervous, I knew I had to do it. Normally I would get all worked up and worried, but I just did it. We left the hospital with a hollow feeling in our bodies. We prayed so hard that our baby would be healthy. All I could pray (BEG) was that God bless us with a healthy little girl. I kept thinking of all the times I said that I never wanted children - I never wanted anything more in my life than to hold my little girl and tell her I love her more than anything in the whole world.
On Monday, June 30, 2008, I got the call from Dr. Puder stating that our little girl was genetically perfect. I had to have her repeat it three times just to make sure. The Fish Test (the initial amnio results showing if the child has Trisomy 13, 18, or 21 (Downs Syndrome)) came back normal. Two weeks later we got the full results that everything was perfect. I have never been so grateful in my life.
Over the remainder of my pregnancy, we came to terms with the reality of having a child with a heart defect. We knew she would need surgery between two and four months of age. We were told she might not grow well. We tried to arm ourselves with as much information as possible. We had our "confirmation" echocardiogram with Dr. Humes at Children's Hospital of Michigan on July 7, 2008, which confirmed what Dr. Puder already had told us that she had Complete AV Canal Defect. We followed up on September 15, 2008 for another echocardiogram, which showed that her valves were growing at the same rate and that the defect was only growing in relation to the size of her heart - it had not gotten any larger.
AV Canal Defect essentially means that the middle of the heart is missing. There is a whole between the top two chambers (atria) and between the bottom two chambers (ventricles) and a common valve, rather than two separate valves (mitral and tricuspid). In addition to AV Canal Defect, Amelia also had a patent ductus arteriosis and a patent foramen ovale.
Amelia was born and looked PERFECT. She had big blue eyes and a full head of black hair. John watched the whole thing as I screamed and told him to "stop smiling", "look at the floor"! I didn't think I was going to make it - then after 40 minutes of pushing (and Dr. Gordinier barely being able to catch her!) she was laying on my stomach. I couldn't believe how absolutely gorgeous she was. I had never felt that rush of love in my heart. John and I love each other so much, but I never knew THIS kind of love. The love that makes your heart smile. The kind of love that fills you until you feel like you are going to burst. It was an amazing moment. I still can't believe that I didn't think I wanted a baby. In that moment, I knew this was meant to be.
Amelia did very well her first few months. She was gaining an ounce a day and eating very well! We had trouble nursing, so Amelia was on formula - she didn't care, she just wanted to eat! I think she just didn't want to work for the food and my body didn't have a good supply. I was devastated, but we still developed a bond through bottlefeeding.
Around 10 weeks old, I noticed Amelia wasn't gaining weight. I took her to her pediatrician, Dr. Lippitt, who palpated her liver and also weighed her and confirmed she was not gaining weight (she was stuck around 12 pounds). Her liver was also enlarged, which was a sign of congestive heart failure. She spoke with Amelia's cardiologist, Dr. Turner, and he instructed us to put her on a diuretic called Lasix. The next week we saw Dr. Turner and he upped her dosage of Lasix and put her on another diuretic called Aldactone, which replaces the body with potassium, which is depleted by Lasix. Her weight gained picked right back up and she was doing beautifully!
Her open heart surgery was scheduled for March 30, 2009 with Dr. Walters, a well-known cardiovascular surgeon at Children's Hospital of Michigan (CHM). In February, Dr. Turner broke the news to us that Dr. Walters was going to be on leave and asked us to move the surgery to May 4, 2009. I immediately said "no way"! March 30 was a "D" day for us. It was this black cloud that hung over our heads. There was no way we were going to wait another 5 weeks to have the surgery. Although Amelia was doing fine, it just felt like we couldn't move on with our lives. We lived our lives in two worls - the "before" March 30th life, and the "after" March 30th life. We didn't know what our lives were going to be like "after". We only knew that it couldn't wait any longer.
Dr. Turner was able to schedule our surgery with the other cardiovascular surgeon at CHM, Dr. Delius. I couldn't help to feel like we were short changing Amelia in some way by not having Dr. Walters as her surgeon. Dr. Turner told us he would trust his own son's life with either of the surgeons - this gave us some comfort. I went back and forth with the thought "what if we should've waited for Dr. Walters", "maybe we shouldn't do the surgery at all" - I prayed, bargained with God, cried - I was just so emotional. I thought I was strong and tried to put on a brave face, but my heart was aching, my head was going back and forth between the "what ifs?" What if I never saw my daughter again after the surgery? What if there was more than they thought and her heart couldn't handle surgery?
On Friday, March 27, 2009 we had Amelia's pre-op evaluation. She had an X-ray, echocardiogram and blood draw. I felt comfortable after we left there that day and had a sense of peace that all would be well. As Monday drew near, however, that sense of peace vanished into fear and panic.
Monday, March 30, 2009 we brought Amelia to CHM. We waited with her in pre-op, removing her pajamas and dressing her in a little yellow hospital gown that we coined her "Princess Dress". She was so calm, so brave. She fell asleep in my arms. The chaplain came to say a prayer and John lost it. It was like it all became real for him at that point. The anesthesiologist took Amelia from my arms and carried her to surgery. It felt like she was carrying away my heart. I prayed that God would carry her through the surgery and would guide Dr. Delius' hands while working on her tiny heart.
The cardiovascular nurse kept us updated during the surgery and finally at 12:45pm she came in to tell us that Amelia was all done and that Dr. Delius would be coming in to speak to us shortly. Dr. Delius came in to tell us she did wonderfully and that her valves were not leaky. She still had two small holes due to the suturing of the patches, but he believed they would heal as she grows. We got to see her a few minutes later as she was wheeled up to her room in the Pediatric ICU. It was a moment even more powerful than her birth - she looked beautiful. She was a bit swollen but her lips were so pink and she looked so peaceful. I thanked God and prayed that he would continue to help her through recovery.
Amelia did beautifully the first day and was taken off the ventilator on Tuesday morning around 5am. Her condition started to deteriorate on Tuesday. Her stats were all out of whack and then she aspirated formula while drinking a bottle and she desatted (her oxygen levels in her blood went way down) and her lips and nose turned all blue. I had never seen that before. I did all I could to remain calm and help the nurse pat her back and help her cough up the fluid. This happened once more that night. Then around 11:30pm the nurse called the doctor on call, who came and did an echocardiogram in the room. After looking at the heart, he told us that she had pericardial effusion (bleeding around the heart) and that they were going to have to try to clear her drainage tube. It was a miracle that the entire cardiovascular team was waiting at the hospital to do a heart transplant and were just sitting around waiting because the heart was delayed. The cardiovascular fellow came and tried to get the clot out of Amelia's drainage tube. They did get a clot out, but still could not get the blood out from behind the heart. They decided that Amelia would go back into surgery and have a drainage tube placed behind her heart. The cardiovascular team took her from us at 3:30am. This surgery was even more scary as we had no time to prepare for it. We had nine months to prepare for her first surgery. I made Dr. Delius promise me that Amelia would be OK. He did. John and I called our parents to tell them she was going back into surgery. My parents had driven back to Spring Lake earlier that night and immediately packed their bags back up and came back to Detroit. John's parents told us they would be down immediately. It was so scary - I cried, shook, prayed. John was so calm. He trust Dr. Delius in his promise, I questioned how he could promise anything. Shortly after 4am, Dr. Delius came out to tell us Amelia was fine. He took out the original drainage tube and put in two tubes, one in front of her heart and one behind. He got most of the fluid out from behind her heart. It turned out to be serrous fluid (the clear fluid before a clot) rather than blood, but either way it had to be removed.
Amelia did wonderfully the rest of the week and was discharged on Monday, April 6, 2009. It was scary to take her home at first - even more scary than when she was a newborn. We were sent home on the same medications as before the surgery and with one instruction - no lifting under the arms for six weeks. I was nervous - how was I going to care for a baby who just had heart surgery? But we got home and it was like nothing had changed. It was a relief and comfort to be home - to sit on our couches, to lay Amelia in her own crib, to sleep in our own bed, to let Amelia rock in her comfy swing.
Amelia was healing beautifully and doing very well at home. We had a few scares in which we thought she was breathing too hard and rapidly, but after taking her to CHM, we were told she was just fine. Five weeks after surgery she developed a really weak cry - it was raspy, forced, breathy - it almost had no sound. We thought at first she was experimenting with a "new voice" and that is was just a developmental thing, but then it got worse. We took her to the ER at CHM and they admitted her so that they could have an ear, nose and throat doctor look at her. The next morning she had a bronchoscopy that indicated she had paralysis of her left vocal fold. It was like another punch to the gut - why did these things keep happening to this beautiful little girl? Hadn't she already been through enough? We were not given any real answers as to why, how, when. We left CHM with a million questions and not very many answers. Would our daughter be able to speak? Would we ever hear her say "ma-ma", "da-da", "I love you"?
I got in touch with my college friend, Chrissy's, brother Dr. Taylor who is a pediatric ENT at The University of Michigan. He explained that vocal cord paralysis was very common in children who had the patent ductus arteriosis (PDA) closed during open heart surgery. The vocal nerve runs very close to the PDA and in 20-30% of children who undergo closure, vocal cord paralysis (always on the left side) is a common side effect. It was slightly comforting to know that she wasn't the only one that this happened to, but it was still overwhelming.
On May 20, 2009, we took Amelia to Mott Children's Hospital at U of M to have a swallow study and to meet with Dr. Taylor. During the swallow study she drank her bottle, which was filled with barium, as the radiologist and speech pathologist watched it on the screen. She also ate some oatmeal that had barium in it. She did wonderfully and there was no sign that formula/food was going into her lungs - finally some good news.
We then saw Dr. Taylor who did a scope down Amelia's nose to look at the vocal folds. He showed us that the left fold had some slight movement and told us that he thinks the left fold is coming around. More good news. He said he didn't see any reason why Amelia wouldn't have full speech capability. He told us that we should come back in six months and they would check it again, but that he felt it would improve. We were so excited to leave a hospital with good news about Amelia. All the while she was smiling with her big blue eyes and gorgeous smile.
Amelia truly is a miracle. She has been through so much in her short life and has remained so brave and courageous through it all. She hardly ever cries during a procedure and doesn't ever seem to fear what is happening. She is an example to us all. How can we complain about simple things in our life when she has been through so much?
We continue to pray every day that Amelia will continue to recover and will keep growing into a beautiful, strong, happy little girl. There is not a day that goes by that I don't look at her and smile and thank God that she is mine. She is my own little piece of Heaven, my own little miracle.
I know now that we were blessed with Amelia for a reason. So many people have said "you are so strong, you are so at peace with all of this" - the truth is, I have no choice not to be. I can choose to dwell on the fact that my daughter has a heart defect, or that she is not 100% healthy, but why? There are so many things in life that could go wrong, but I have a gorgeous little girl that fills the room with sunshine when she smiles. I know that God sent us Amelia because we are strong and have an extensive network of supportive family and friends. There were/are so many prayers and well wishes for Amelia. I know, too, that God never gives us more than we can handle.
My mission now is to spread awareness about congenital heart defects. Through Amelia's journey, I met a friend, Mary, whose son, Drew, had a CHD called pulmonary stenosis. Mary, like myself, wanted to spread awareness about CHDs. She asked me if I was interested in starting a chapter of an organization called It's My Heart in the Metro Detroit area. There was no question - I told her yes! We now have a chapter started and are working on fundraising events to help us spread awareness about our organization and to share our children's stories in hopes that awareness will bring more research to the #1 birth defect.
Life is good. God is good. We are thankful every day for miracles. There is no way that one can look at Amelia and not see God's work and not see a beautiful miracle. Our lives are truly blessed by this little girl and we are eternally grateful to call her our daughter.