Friendship Blessings

One of the things I had heard about having a kid with Down syndrome was how you may lose some friends over time. I'm not really sure what the reasoning is behind that but I couldn't imagine how that could happen. Seriously, someone would stop being my friend because my kid was a little different? Maybe that's not what was meant. Maybe they meant people won't understand us anymore. I don't know. It doesn't seem plausible but I suppose it could happen. We had only told a few people about Kendall before he was born. Several of my best friends had no clue.

Why didn't we tell anyone about Kendall? A totally valid question. I think first I had to figure it out on my own. My feelings, that is. I had to grieve what was no longer my perfect pregnancy. Then I had to get to the point where I could talk about it without crying. That was the hardest part. I didn't want to seem sad or feel ashamed of my baby so I didn't want to talk about it because I knew it would lead to me crying and that would give the absolute wrong impression of what I wanted. I also didn't want people to feel sorry for me. I haven't been fearful of losing my friends but I don't want the pity looks either. I didn't (and still don't) want people's response to me to be "I'm so sorry" when I tell someone he has Down syndrome. Dude, why are you sorry - that's what I want to say. He is amazingly adorable. There is nothing to be sorry about. But I have prepared myself for this so it hasn't stung too bad -yet. I just try to put myself back to a year ago when I had no clue about this world and what I would say if someone told me their kid had DS. I totally might have said, "Aww I'm sorry." I get it. You don't know what you don't know.

And good God yes, please keep praying for us. I will take every single prayer that anybody will throw at me. But do me a favor and pray for my sanity due to the fact that I have a house full of rowdy boys, not simply because God blessed me with this baby. One of my co-workers, who is also a DS mom of an 18 year old, told me recently, "You may not feel it now but on some days you will feel like you got the golden ticket with Kendall." She went on to say, "I feel like that almost every day." This really resonated with me. I am the lucky one who gets to experience something that most never will. Maybe I should feel sorry for everyone else? Because I can tell you, this whole new world of people I've been exposed to over the last 3 months is AH-MAZING! It's like I'm part of the DS Illuminati or something. Maybe I will have Ed write a rap song about it.

Over the years we have been blessed with a lot of friends. And I mean that as in the 'we are so fortunate to have so many friends' kind of way. Our town is small. And both of our families are from this same small town. Ed's family goes back several generations in Chapel Hill and mine since my Uncle Wally came to UNC back in the sixties, which is how my mom ended up here in a round-about way. There are a lot of pluses to the fact that Ed and I went to high school together, like how we have had a lot of the same friends since we were kids. And we have been really fortunate to meet a lot of new friends along the way. Our work friends, people that have moved to the area, and some of our dearest friends from our time in Greensboro. There is something to be said about friends who are there for you every second that you need them. And you all have shown up in droves. My kids are so lucky to have you all in their lives.

On Sunday, October 11th, we will be participating in our first Buddy Walk with the Triangle Down Syndrome Network. I signed us up for the walk and registered us as a team, "Kendall's Kruisers." Part of this process allows you to create a fundraising page to raise monies for the TDSN to support programs in the Triangle for people with DS. You can visit our page HERE. I decided this would be how we would announce to our friends via Facebook that Kendall has DS. The support we have received, whether it be words of encouragement, cards, or money donated to our team, has been beyond overwhelming. Friends that we haven't seen or actually spoken to in years have donated. Friends of friends have donated. We have been blown away with how many people are supporting us on our journey to be the best parents we can for Kendall. Comments to my blog have left me crying happy tears that I have so many friends who care about me and my family. This experience has been amazing. And it has only been 3 months. So thank you. All of you. Every single person who has thought of us, called us, donated to us. You are encouraging us and you are pushing us to be the best parents we can be. You are appreciated and we love you.

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."