Dodging the Heart Bullet

When we first found out that there was a chance Kendall was going to have Down syndrome and I spent my two weeks over Christmas break reading, I learned about all of the potential health concerns that come with it, some of which become more prominent with age. About half of all children born with DS are born with some type of heart defect. There is an increased risk of leukemia, sleep apnea, obesity, dementia, gastrointestinal issues, thyroid problems, hearing loss and poor vision. With heart defects being the most immediate concern, we were told that we would have monthly ultrasounds throughout the pregnancy and a 2 hour fetal echo cardiogram to focus strictly on the heart. Often times babies born with DS require heart surgery, many within the first few months of life. The fetal echo would help the medical team caring for Kendall understand what obstacles we might be facing upon delivery.

At about 7 months along we had the fetal echo at UNC. He weighed 1 pound 10 ounces at the time (above picture). It was a super long ultrasound that focused solely on the heart and the blood pumping through it. It wasn't as fun as the other ultrasounds because we weren't looking at any other body parts and I had no idea what I was looking at on the screen. We just had to wait for the technician to finish and then hear from the doctor. When we met with Dr. Stamilo he told us that everything looked great. There were 4 chambers, which was a HUGE relief. That is about the only thing I remember from that appointment. I had read about babies born with less than 4 chambers and open heart surgery was required to literally build the other chambers out of the itty-bitty heart that was beating inside an infant. Knowing we were dodging that bullet was an enormous comfort. We weren't necessarily out of the woods but I was feeling better. All we could do then was wait.

Right after Kendall was born he was taken to the nursery for another echo with a cardiology team. It seemed like he was gone from the room forever. When he came back from the nursery the cardiology team informed us that there were four heart defects that weren't picked up by the fetal echo. There was a PDA, two VSDs and a muscular defect around the right ventricle. The PDA (patent ductus arteriosus) is an opening between two major blood vessels leading form the heart. If left untreated, poorly oxygenated blood flows in the wrong direction weakening the heart muscle and causing heart failure. A VSD (ventricular septal defect) is a hole in the heart that occurs in the wall that separates the heart's lower chambers and allows blood to pass from the left to the right side of the heart. The oxygen-rich blood then gets pumped back to the lungs instead of out to the body, causing the heart to work harder. Kendall had two holes. The right ventricle becomes over enlarged and dilated due to the backup of blood. A cardiology appointment was scheduled for 2 months old to monitor the defects and decide a course of action. Below is the actual diagram I was given by the cardiologist.

The long awaited cardiology follow up was on August 5th. We checked in to the Children's Hospital at UNC and waited. The first step was an EKG. Imagine a tiny infant laying on a bed with electrodes taped all over his body laying perfectly still. I wish I had been able to take a picture but I was too busy holding his arms down. It took 3 people to hold him down without allowing him to move long enough to get a good reading. The reading only takes like 10 seconds but it seems like eternity when your baby is screaming from being held in place. Torture. After the EKG we had to wait for the technician to come get us for the echo. We waited forever. A pediatric cardiology resident came in to talk to us while we waited. I am totally not a selfie person but I am realizing that if I am going to document our adventures with this little guy I have to learn how to take them to reflect where we are, what we're doing and how I'm feeling.

Then it was finally our turn. Once again, he had to lay down and they strapped some electrodes to him, although it wasn't as many as the EKG. Then the echo was performed, which is basically a sonogram of the heart, directly through his chest.

When the echo was complete, we were sent back to our exam room to wait for the doctor. And when he came in he was smiling and chipper and chuckling. He said every single heart defect had resolved itself. All on their own. They were gone. No more holes. The PDA closed. And the right ventricle was no longer enlarged. His exact words were, "Kendall has been released from cardiology." No follow ups. No surgery. Amazing.

Kendall failed all of his newborn hearing screening while we were in the hospital so we were referred to an audiologist for a full hearing test. This took place at the UNC Hearing Center on July 27th, at 7 weeks old. When the appointment was booked my pre-appointment instructions were to not feed him that morning so he would come in angry and hungry. He had to be asleep for the entire test so I would need to feed him right before it started to try and keep him asleep. The test took 4 hours. Yes, 4 hours. I had to sit in a chair, holding him while he was electroded up (yes, I made that word up) and had mini headphones in his tiny ears. If the headphones came out or if he unhooked one of his electrodes, the test had to be paused and couldn't resume until he was asleep and still again.

All of the electrodes and the headphones were hooked up to a computer where the audiologist and her student watched his brain activity. Kendall can't tell us when he hears a sound or even signal in any sort of way so they have to monitor his brain reactions. After the test was over, the audiologist told us that the longer the test runs the better the results. I didn't understand her concept at first until she explained that the test starts with a loud, low bass sound. Similar to a jackhammer. If there is no response to that sound, then most likely there is a significant issue. The longer the test goes on, the higher pitches and frequencies they can test. So after 4 hours, we were happy to receive the news that Kendall's hearing is in the normal range. The audiology report states that there is normal peripheral hearing sensitivity for the frequencies tested. It was recommended that we have a follow up for a behavioral hearing assessment in February. He will then be 8 months old and will hopefully be able to respond behaviorally to a hearing test by turning his head towards the direction of sound, etc.

We know there will be more challenges and more to come but we are feeling incredibly thankful for the child that we have been given and for dodging some major medical complications early on.

Kendall Mason Geer

It's been 15 months since I posted. It's time I give it another go. Our life has changed. We are now a party of five instead of a family of four. This little guy has joined our team.

On Thursday morning, June 4, 2015, at 12:26 am, Kendall Mason Geer made his entrance into our world. At 20 inches long, he was 6 pounds and 7 ounces of beautiful, healthy baby. He is our beautiful, healthy baby who has been blessed with an extra copy of the 21st chromosome in every single strand of his DNA. Kendall was born with Trisomy 21.

We were prepared and we were excited. Let me tell you how it began. The beginning of our journey. The journey of our life as Geer, Party of 5. On December 9, 2014 I was 12 weeks pregnant. We were scheduled to have an ultrasound at UNC. They asked if we wanted to do a first trimester screening. I don't remember doing that with Deuce but when they said it was non-invasive and just through ultrasound I thought, why not? I was so excited to make the ultrasound last longer so I could stare at his black and white image on the TV. I had no idea what this screening test even checked for but I didn't care. I wasn't concerned. Then when the ultrasound tech took the measurement of fluid behind the baby's neck, I knew it. I knew something was wrong. Her measurement said something like 5.6. That little teeny number popped up on the screen before she saved the image and moved onto the next thing. She said nothing and kept on screening. All that was going through my mind was that the fluid is supposed to measure between 1 and 3. Five-something was way over the threshold for normal. What it meant, I had no clue. But it wasn't right.

The technician finished getting all of the images she needed and then she left to share them with the doctor. As soon as the door shut I looked at Ed and said something is wrong. He thought I was crazy. The untrained human eye can't read ultrasound images for the most part, unless you're a seasoned mommy veteran or it's an obvious body part. Heck, my mom thought Kendall's leg was his manhood and made a comment that she just knew Ed was proud. But I knew it. I knew something was wrong with my baby. A few minutes later, a wonderful, soft spoken doctor, Dr. Stamilo, came in and shared the news. Our baby had a cystic hygroma, which was the excess fluid. There was a 50% chance that the baby had some form of Trisomy, a 35% chance of major heart defects and a 15% chance that everything was normal. I stared straight at him as I took in all of this information and let the tears roll down my face. I didn't even know what to think. I just nodded my head and said okay. We met with a genetics counselor who gave us too much information for my brain at that moment and she told us about a fairly new blood test that would tell us with 98.6% accuracy what the exact condition would be. We consented and I was sent down to the lab for a blood draw. We left the hospital and I couldn't talk. I didn't know what to say.

I was crying. I was mad. I was hurt. I was sad. And mostly, I was confused. I wanted to comfort Ed but I was too busy crying to try to help him. When he's sad he doesn't really show it. And when I'm sad he does his best to find the positive. He can see the light when there is only a tiny sliver and me, I crawl up and hide in the darkest of darkness. We had to wait 2 weeks for the results of the blood test. 2 agonizing weeks. We had been told there was a 50% chance of Trisomy 13, 18 or 21. I googled the different Trisomy types and tried to see the positives. I tried to imagine what my life would be like if my baby was born with one of these. I couldn't imagine it. And I couldn't find happiness within it. I was in a fog for those 2 weeks. Two weeks later, December 23rd, we received the call. We were in the kitchen. I was cooking for Christmas. Deuce was in the living room playing. And she said it. There appears to be an extra 21st chromosome. There was a 98.6% chance our baby was going to have Down syndrome. I didn't cry (not until I saw my mom anyway). I just stared at Ed. I thanked the nurse. And I hung up. In that split second, with those few words, my life as I new it changed. 

I still had 6 months of pregnancy left. 6 months of preparation. Mental preparation. I didn't have any testing done with Deuce and my justification was because I was not going to terminate the pregnancy for any reason. Why stress myself out? What I didn't think about was the mental preparation that is required when special needs is involved. This time, I had 6 months to mentally prepare myself for what lied ahead. And for that I am now thankful. I spent my entire Christmas break from work reading about Down syndrome. I learned so much. I learned about challenges but also about how much more enriching my life would become. And then I mentally wore myself out. I didn't want to read about it anymore. I didn't want to talk about it anymore. So, what? When I became a mother I fell hard. As all mothers do, I learned to love hard and fierce. Why would this time be any different? It wouldn't and I knew it. I still had a responsibility to nurture and love this baby growing inside me, No matter the physical or intellectual differences. And then I became okay. Really, truly, okay. Don't get me wrong, I've cried and struggled mentally and emotionally at times but I am still okay. When he was born and the diagnosis was confirmed, I smiled. He was meant for me. I need him in my life. I need him to teach me how to be more compassionate. I need him to teach me how to be more carefree. I need him to teach me more about me.

As for the story of his birth, well it was quick and traumatic. For me anyway. Wednesday, June 3rd, I worked a full day. Looking back, I think I had 2 mild contractions throughout the day. One was in a meeting where I closed my eyes long enough for my boss to ask me if I was okay. But I was still 3 weeks out from my due date so I chalked it up to him just moving around. When I got home Ed wanted to meet his mom for dinner. I told him to take Deuce and leave me at home because I just wasn't feeling well. I decided to wash a load of baby clothes and wash the car seat (it had been in the attic for 4 years) and cook myself dinner. I started having contractions and they were random, sporadic, weak and sometimes intense. I didn't know what was going on. I hadn't packed my bag or finished preparing for my leave at work. We had just moved back home to Chapel Hill the weekend before so I still had tons of unpacking to do. After constant interrogation from Ed, I finally agreed to go to the hospital to get checked. We called his mom to come sit with Deuce (who was incredibly upset from seeing me struggling through contractions and then having to be left behind while I went to the hospital) and we left for UNC at about 10:40pm. I told Ed not to call my mom or sister because I didn't want to wake them up and have them come to the hosptial if it was a false alarm. Ed was going to drop me off at the entrance to the Women's Hospital but I am kind of stubborn so I told him I could walk. I had to stop twice for contractions. By the time we got checked in to labor & delivery and I changed into a gown the on-call doctor checked me and told me I was already at 7cm. I looked at Ed and said call my mom! They immediately moved me to a delivery room and the contractions were back to back. There was no break. By the time I got into the delivery room I was 10 cm and feeling a strong need to push. It was like nothing I have ever felt before. There was no time for an epidural so I felt every ounce of pain.

Because of the Trisomy 21 prognosis, I was a high risk pregnancy. The delivery room was full of staff. An entire team of NICU nurses, a fetal-maternal high risk team, the regular fetal-maternal team, anesthesiologists (although I'm not sure why since I didn't get anything), labor and delivery nurses, etc. It felt like the huge room was crammed full of people and I could hardly even see Ed. It all happened so fast. I remember one time opening my eyes long enough to find him and his eyes were huge. I could see how nervous and scared he was. Holy hell, it hurt so bad. And I can tolerate a lot of pain. Knowing that is what I believe made Ed a little scared. And the team appeared frantic. In hindsight it was probably just because it happened so fast but in the moment it seemed like something was going wrong. Very wrong. I remember the sweet high risk OB telling me that Kendall's oxygen levels had dropped rapidly and I had to get him out or I was going to have another c-section. I pushed with everything I had until they told me his head was out. One more push was all I needed and there he was. Laying on my chest, looking up at me. With his beautiful eyes. I felt like She-Hulk. And just as fast as the pain had come, it was all gone. It was all worth it. And I was in love all over again. So here, we are. 11 weeks in to our new adventure. And loving every second of it.

"Sometimes our lives have to be completely shaken up, changed & rearranged to relocate us to the place we're meant to be."

four years old...

Dear Deuce,

You are four years old!

I am so full of love for you.

My favorite time of day is first thing in the morning when you crawl into my bed, wrap your arms around my neck and tell me you want to snuggle. I don't want these days to end.

You tell me you love me frequently.

You tell me I am the best mom in the whole world.

You tell me you love me thiiiiiiiisssssss much, with your arms stretched out wide.

You make me smile every day.

You make me so thankful that He chose me to be your mommy.

You are smart, funny, silly, sweet and independent all in one.

You are so full of energy and you are loved be so many.

You really enjoy playing soccer.

You like baseball, but I think the pace may be a little slow for you right now.

I often find you playing in the dirt in the infield instead of watching the batter.

You have so many great friends.

You consider Carter, Harrison and Chase to be your brothers.

And you tell us that Zaria is your girlfriend.

You love to play the drums and listen to hip hop and country.

Your favorite group is definitely Florida Georgia Line.

You can sing all the words to their songs.

And you love Hot Girls in the Country by Honeysuckle Ridge.

Mommy is so proud.

Your favorite restaurant is the "Peanut Place."

Texas Roadhouse

You also like to eat pizza, hot dogs, cheeseburgers and masghetti. Yes, masghetti.

I love you so much Christopher.

Happy 4th Birthday.

Hi.lar.ious. video of Ed....

Ed had his wisdom teeth taken out this morning. Check out this video of him in the recovery room immediately after. He was quite loopy and kept making faces at this little nurse behind me. He is now laying next to me, knocked out, sawing logs.

Urgent Care - Tyler Hansbrough Style

I can't believe that it took us 3 years and 10 months before Deuce had his first visit to the Urgent Care for stitches. As active as he is and as hard as he plays, it's a miracle that we haven't ended up there before. It was the afternoon of the Duke/Carolina game and Ed and TJ stopped to pick Deuce up from school. He was so excited to see them that he took off running across the classroom, tripped and smacked his head on the edge of a table. He hit his brow bone perfectly so that it split open, much like a boxer when they are punched. Ed said it immediately started gushing blood and he started crying. I was leaving work so I rushed back to Greensboro to meet them at the Urgent Care. Deuce is a momma's boy so I could only imagine his terror being stitched up and me not being there. I am sure I was making it much worse on myself than necessary but isn't that what we do as moms? So by the time I got to the Urgent Care they were still in the waiting room. Deuce had a single band aid over his eye that was soaked red with blood. But he was as happy as a clam. The first thing he said to me was, "Mom, I got bleed on my tarheel shirt." I think that was the most devastating part for him. He was finally brought back as the last patient of the evening and the only time he really cried a little was when they took the band-aid off. Other than that he was fine. We made it home just in time for the basketball game (thank goodness because it was a great one).

After they stitched him up, I ran to CVS to get some gauze pads. I was worried that he would try and pull the butterfly band aids off or scratch his eye while he was asleep. So I covered him in gauze and he thought it was the coolest thing ever. He couldn't stop looking at himself in the mirror and smiling. He tried to stay up for the basketball game but only made it to half time. He crashed in my bed. He is all healed now and just has a little line over his eye.

Winter Snow 2014

We had so much snow hit us in 24 hours that I have now seen enough to last me for the next couple of years. The snow is so fun for this first couple of hours and is so pretty when it is coming down. But when you live in the south where there is not enough city equipment to handle the amount of snow that we got, it is a huge burden. Fortunately, we all knew it was coming so I worked from home on Wednesday. Thank goodness I was not over an hour away from home because I  never would have made it. It started coming down a little after lunch time and I was assuming that Ed was going to leave work and scoop Deuce up on his way home. But no, he's goes by the book so when his work didn't officially dismiss anyone, he didn't leave. So I checked the cameras at school and saw that Deuce was in the middle of a nap. It had just started snowing so I thought I would let him sleep and then go get him. It would take a little while to stick to the roads because it wasn't sticking to the grass quite yet. After about an hour I kept looking outside and I could no longer see the road. I freaked and left immediately. My little civic is not made for snow and ice. Deuce's school is about 10 minutes away from the house. It took me 2 hours to get to him and get home. Some very kind strangers even pushed my car (and everyone else's) up an icy hill in the middle of a huge intersection because we couldn't get through. When we got home I swore I wasn't leaving. And I didn't for almost 3 days. We got about 10 inches at our house over the next 24 hours. By the end of the next day, I was over it. I was trying to work from home (as was Ed actually) and when you have a 3 year old who doesn't understand work and only understands sledding, it's super hard. Friday I decided to clear the driveway so we could attempt to get out. The main road in our neighborhood had been plowed but the front yard is blocked from the sun by our house so hardly any of the snow had melted. And of course when they plow, they pile up like 2 feet of snow in front of your driveway, like that helps at all. My little guy loves to help out so he got his little pink sand shovel and went to work.

Winter Basketball 2013 - 2014

Deuce finished up his second season of basketball at the beginning of the month. He really enjoyed playing with Carter and the bigger kids. The boy never stops, he is super busy. Starting next month he will be playing soccer and baseball, basketball at school and taking karate. He wants to try everything and I will definitely let him. Although he has the sports he really loves (football), I want him to grow up playing it all and not focus on any one thing in particular. I think that makes you a better athlete in the long run and there is less chance of burn out. And who knows what his size will be and what he may end up being better at. As long as we can afford it, I'll encourage him to try.