Mrs. Hot Mess

With pregnancy and a new baby comes some seriously crazy emotions. I knew that. Make it a special needs pregnancy and you are talking about recipe for disaster. But hold on, try this: you move a week before you deliver, your 5 year old graduates from preschool 5 days after delivery back at his old school, he starts summer camp in a new town with new kids the following week, you are at different specialty doctor's every week with the baby, maternity leave ends so you have to leave the baby to go back to work and then your 5 year old starts kindergarten at a new school, with new kids. Again. All of that within one summer. Yeah, I'm a hot mess.

Deuce had been at Kids R Kids for two and a half years. He loved it there. The staff was great and he made some really great friends. The day that Kendall was born was his graduation picnic. I had been looking forward to it because we had moved the week before so I knew Deuce would be excited to see his friends back in Greensboro. He had been staying with my mom in the interim. Well Kendall decided to show up 3 weeks early so Nana had to take Deuce to Greensboro. She sent me this picture to make sure I knew he was having a blast. Hot Mess.

We went home from the hospital on Saturday night and preschool graduation was Tuesday. I didn't have enough forethought to worry about what I was going to wear so at the last minute I was trying to go through my closet that was still full of unpacked garbage bags to find something. I'm not supposed to have to think about dressing nice 5 days after giving birth dammit! But whatever. I scraped it together. Hot Mess.

I cried when they played pomp and circumstance for the kids to walk out on the stage. Ed looked at me like I was crazy. I totally blame it on the hormones. I spent the entire ceremony furiously fanning myself with the program until I basically creased it all to hell. Hot Mess.

We went out to dinner afterwards to celebrate. Me, Ed, all 3 boys, Grandma, Nana & Papa and Wawa. My car wouldn't start in the parking lot afterwards. We're in Greensboro. Where I don't live anymore. Luckily Laura had some jumper cables and Papa drove it back while me and the littles rode back with Nana. Hot Mess.

That first week home from the hospital was rough. No camp or school for Deuce, Ed was working from home (remember we are in a tiny apartment temporarily), a new baby and an exhausted mommy. We couldn't really take Deuce to do much and he was going crazy. By the first day of summer camp, which was just 6 days later, I couldn't wait to get them him out of the house. Hot Mess.

Deuce spent the summer at the YMCA where he went on 2 field trips per week, had swim lessons and free swim every day and spent many hours on the playground. It was a great camp, the staff was great and super organized. It really worked out well for us. He is also in after school there so he was very comfortable riding the bus there the first day.

Then before I knew it, the baby was 10 weeks old, it was time for me to go back to work and Deuce had to start school. I tried to get the doctor to push out my leave by 2 weeks so I could get through Deuce starting school before I went back but he wouldn't approve it. Ugh. Told me it would be good for me to get back to a routine, including work. Thanks dude, because you've birthed babies and started kindergarten plenty of times. (Yes, I just referred to myself as starting kindergarten because I kind of am).

The first day of school came and Deuce held both me and Ed's hands as we walked him up the sidewalk to the cafeteria. I was hanging in there until we walked up and I saw Val at the door wiping a tear. She was holding it in good though. Harrison was totally not feeling school that day. Deuce gripped my hand a little tighter. We went in and saw Aja who was beaming ready to start kindergarten. She had her two fingers on her lips and the others in the air, just like a little teacher lining the kids up, silently telling them to shut up. I tried to push Deuce over with her but he wouldn't let me go. Then the tears started. For him first. He was trying to blink them back and kept asking why he wasn't with Harrison AND Aja. Then Hot Mess over here tried to talk to him about how they all have recess together and lunch at the same time so he will be able to play with Harrison all the time. Trying to convince your scared kid to go out on his own when you are crying too isn't such a bright plan. And an unattractive one at that. But I did it, I walked away and left him there. Left him to start this new journey. And he loved it.

So yeah, I'm a hot mess. Have been all summer. But I will always try to hold it together because I'm Mary freaking Poppins and that's what I do.

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.