Friday, October 13, 2017

Life after discharge;


                On the day McKenzie was discharged I felt a mix of emotions; excitement, fear, nervousness, anxious and ready. I always thought taking McKenzie for heart surgery would be the hardest thing I’d ever have to do, and while it was certainly terrifying, painful and overwhelming – I’ll admit that bringing her home has been equally if not more terrifying and overwhelming. As we said our goodbyes to the many nurses and doctors that have known McKenzie since she was four weeks old, we left the Cardio PICU at Arnold Palmer and drove home. Once we arrived home, McKenzie was exhausted and sleep well through the rest of the day and night, however, the last two days she has been up and down. It’s been challenging to determine if she’s okay, she has had inconsolable moments and moments that left us feeling like something may be wrong – but really, with so many possibilities it’s been difficult to identify what requires medical attention as compared to what is normal for a healing process after open heart surgery for a 3-month-old.

              While we have been surrounded by support from family and friends the truth is, unless you have gone through this or are going through this there is truly no way to understand what it’s like. Most say babies are a handful, you will be up all night and find yourself worried about every little thing. When adding genetic and cardiac issues to the average baby, it’s life altering. “You can’t put her in a bubble”, “You can’t just focus on the down syndrome”, “Well her heart is fixed, so you will be back to normal”, “an ounce really isn’t something to freak out over” and the list of other’s opinions goes on. A child with down syndrome and a heart defect often requires a different type of attention; germs become top priority, so while we don’t want to “bubble” our child – we also don’t want to see them hospitalized for countless days. Our day revolves around medication schedules, children with down-syndrome often face multiple health issues as they are considered “floppy” and often require more attention. Our caller ID consists of on-call doctor calls – McKenzie’s heart is repaired, but she will always be a cardiac patient and her recovery can still be life-threatening. Our days are full of appointments – we keep a bag packed in the trunk as McKenzie has struggled with her weight and the loss of just a few ounces could mean hospitalization for her. The truth is, when we’re finally home for the night and able to sit down – we force ourselves to shower, eat if we can and sleep if it’s possible because in 2-3 hours it’s time for medicine and a few hours after that the day will begin again.
               
                McKenzie has been admitted to the ICU five times and every-time we return home, I struggle to find a new routine that fits her new needs. As a stay at home mom, this process can become lonely as Nikki works long hours. During McKenzie’s stay at Arnold Palmer, we were lucky to have met another couple there while their son recovered from his heart surgery. This has led to a friendship as we both take our children home and attempt to regain a since of normality and struggle to understand our children’s new needs, new routines and how we can fit regular life in with this. I am thankful for our encounter as the process has become just a little less lonely.


                Overall; I am beyond thankful for McKenzie (and her new friend Landon) health. There is no way to describe what we’ve been through or will go through in our futures but I know with love, determined hearts and faith we will get through. 

Friday, October 6, 2017

Recovery

"Sometimes, real superheros live in the hearts of small children fighting big battles" 

I have never met someone so strong, fearless and full of life. Nikki had to return to work earlier this week which has caused extra stress on us both. It's been so hard to leave Kenzie every night, but I am so thankful for the Ronald McDonald house for allowing us to stay with them. We are right next-door to the hospital and while we cannot be with McKenzie every night, it helps being so close

McKenzie has three tubes in her chest, roughly fifteen-twenty IV lines and an oxygen flow. We are currently five days past surgery; On day three, the last tubes were removed and her sleeping medication was stopped overnight. On day four, McKenzie's pain medication was stopped - however, she was in a great deal of discomfort and not only received her pain medication but received a sedative as well. On day five, all but one IV was removed and she was no longer in pain from the procedure - but had stomach cramps and received Tylenol, gas medicine and a suppository. 

While she has had some great progress, there are still a few speed bumps ahead. Doctors have found a small amount of fluid in her right lung, a blood clot in her right leg, a few episodes of high heart rates and the inability to come off oxygen. McKenzie is currently in one of the best hospitals and is surrounded by an amazing team of doctors and nurses who know her from past admissions. 

As we take every day in stride, we continue to pray for McKenzie's health and comfort. I never imagined my life to be this - full of oxygen and meds for our baby. Everyday has been full of feeding pumps, monitors and checking her weight. Every appointment has been full of x-rays, blood draws, surgeries and praying. When McKenzie's discharged, her recovery wont be complete as she will still be a risk for illness and infection. We will do whatever it takes to ensure her health and we will continue to pray she keeps up the fight and is able to gain strength and quality of life.






Open Heart Surgery

There are no words that I could ever find to explain the day of McKenzie's heart surgery. The night before we got a hotel room near the hospital to save drive time in the morning. I watched her sleep for hours and when the time came to leave, I held back every emotion I felt and we drove to the hospital. We arrived at the scheduled time of 6 am, and shortly after the nurses began their assessments of her. Nikki and I tried to talk casually, like we weren't getting ready for the longest day of our lives.

At 7:30 the anesthesiologist briefly reminded us of his plans and the risks involved. At 7:45, the surgeon came for McKenzie. The hardest thing I have ever had to do was hand our baby to someone we've met twice who would stop her heart. McKenzie would be clinically dead and all we could do was pray and wait

We eventually made it to the cardiology waiting room, a room we've seen so many times but only once did we see it this way. As hard as I tried, I couldn't get myself together. I obsessed over every detail, I questioned if McKenzie was mad at me, Did she know I love her?, What if she doesn't make it to the bypass? What if she doesn't make it back? What if something goes wrong? Will she recover ok? Will she be in pain? Is she in pain? Is she scared? Is this really happening right now?

Arnold Palmer uses an app to update parents of their loved one's surgery progress. At 8:02am McKenzie was asleep safely and they began working on the lines needed for surgery. I found comfort in knowing she was dreaming. At 8:57am the procedure began and I felt sick to see the image of them cutting her chest. At 9:19am they began to dissect down to get access to her vessels for bypass. At 9:19am, I prayed and cried in the chapel. At 10:14am, McKenzie was successfully on bypass. 

After multiple more updates, ( graphic photos and videos) at 12:49pm McKenzie was officially off bypass and they began an echo. At 1:39pm, McKenzie was successfully out of surgery and at 2:12pm she was in the PICU. We waited another two hours before being called back to see her. As we scrubbed our hands and walked to her room, my entire world stopped.

It didn't look like McKenzie, I instantly felt sick. The wires, the machines, the tubes, the blood. Her eyes had liquid on them to prevent dryness, it looked as if she had tears falling down. She heard our voice and even though she was sedated, she started to move. She wanted us and we wanted her, but at that point - we were bad for her and had to leave so she would rest. 

I handed my baby to someone who took her away and cut her open. We waited as her heart was being repaired, we waited in fear and hope. We saw our baby hooked up to multiple machines and as she began to show the desire to acknowledge us, we were forced to walk away. 

Seven in a half hours, that was the time from us handing McKenzie to the surgeon to us seeing McKenzie in recovery. This day, by far has been the longest and hardest day of our lives.

Thursday, September 28, 2017

The Cardiologist says; it's time.

Every ounce McKenzie gains, we celebrate. It's a struggle to achieve these goals and most parents wouldn't understand. At almost three months old, McKenzie is still wearing newborn clothes and some are still baggy. Today, McKenzie is almost 8lbs and that is such a huge step for her weight goals.

During last weeks round of appointments, McKenzie's cardiologist decided it was time for her heart to be repaired. While this surgery was originally scheduled to happen at 3-6 months old, due to McKenzie's frequent hospital visits, low weight gain and echo results her cardiologist wants it done. We have wanted her heart repaired since she was born so she could thrive and avoid frequent hospital visits, however, now that it's time - we're terrified

McKenzie turns three months next week, unfortunately she will be recovering that day as the surgery center called to schedule her for Monday. So, we decided to take her third month photo early.

Today we took her to her pre-op appointment for blood, vital checks and x-rays. We also met with the surgeon and anesthesiologist to discuss the procedure. I was overall surprised with the time the surgeon took to speak with us, he was very clear and answered all of our questions. But, the truth is, with every question answered and every thought explained - I still find myself wondering so much. 

Now, sitting at home with only three days before McKenzie's surgery I am overwhelmed with fear, anxiety and sadness. I'm overwhelmed by thoughts of our week to come, scared of her surgery, anxious for her surgery to be complete and sad that she has to endure this at all. There is little comfort to be found, I intend on enjoying the next few days with her and focus on Monday when its Monday.

Saturday, September 16, 2017

Meet McKeznie.

Today I realized that lately I am guilty of focusing on McKenzie's health more than I have focused on who McKenzie is. I realized that I haven't properly introduced McKenzie to the world yet; so, meet McKenzie.

McKenzie has a few nick-names; Kenzie and Kenzie-Cole. She has shown a great deal of independence and while she struggles holding her binky in her mouth, she absolutely loves it and we often spend hours holding it for her. Kenzie loves her head-chalk (hedgehog), mirror, car rides (if we are moving), anything bright, bath time (until shes cold!) and snuggles for hours.

Overall, McKenzie is such a happy baby. She only cries when something is wrong and loves getting in her PJ's around 9 pm to fall asleep and she sleeps well through the night - sometimes until noon the next day. When she wakes up, she baby-talks to herself until we hear her. She has finally found her voice and loves to tell us all kinds of baby-stuff. 

McKenzie loves to move! She kicks her feet all day long, moves down to the bottom of her crib and has found a new love for sleeping on her sides. For a baby who has had struggles throughout the last several weeks, she is the happiest, smartest, strongest little girl we know.


While we attend doctor appointments weekly and have had a few more hospital admissions, she continues to grow and advance with every day that passes. McKenzie will be a fiercely happy, independent, strong, smart and funny little girl - We struggle with wanting her to stay a baby forever and not being able to meet who she will become. I couldn't be more proud of her determination and full of life personality.


Thursday, August 10, 2017

Heart Moms

We knew McKenzie had a heart condition that is common in babies with Down syndrome but we never imagined it would change our lives forever. Congenital Heart Defect (CHD) affects nearly one of every hundred babies and is the most common cause of infant death. Approximately 25% of children born with a CHD will need heart surgery or other interventions to survive. McKenzie has spent more time in the ICU then she has at home, some days we find it incredibly difficult to leave her bedside and other days we force ourselves to get some food and fresh air. Today, we found ourselves standing in an empty room feeling complete and utter helplessness as they carried our baby away. She was only gone for an hour, but that hour that felt like eternity. 


The doctor who performed her surgery were reassuring, they made sure to send photos throughout the procedure; this was both a blessing and a curse. We tried to remind ourselves the benefits of this surgery and the risks if she didn’t have it, but it didn’t make it any easier to know your one-month old was having surgery and this would only be the beginning. CHD is a life-long risk of health problems, there is no “cure” even when there are no more procedures, there will always be appointments, scars, risks of issues with growth and eating, developmental delays, difficulty with exercise, heart rhythm problems, heart failure and sudden cardiac arrest or strokes.



As we waited for McKenzie to return from surgery, I realized how incredibly different our lives were becoming and regardless of how much we explain, those around us could never understand. Becoming a heart mom wasn’t something we planned and it certainly has left us raw and exposed with emotions. We have seen things we never imagined, learned things we never knew existed and gained strength we never knew we had.

McKenzie made us heart moms and there is no surgery too big or piece of medical equipment to complex that could ever stop us from being completely proud of how strong our little girl is and how strong she has made us.

Monday, August 7, 2017

Heart Failure

Heart Failure”; two words no mother ever wants to hear. We knew McKenzie would eventually have heart surgery when she was strong enough around four to six months; we also knew we would need to work hard on ensuring she stayed healthy and gained weight in the meantime. Two weeks after she came home she started to sound congested, so I took her to the hospital to be safe. The doctor checked McKenzie and documented all her health conditions, she then turned to me and explained color of her skin, low lungs, and low weight.  I stood by McKenzie’s bedside as the doctor finished explaining her findings, I expected a list of things to do and a check out to follow.

When the doctor turned and said she was sending us back to Orlando because McKenzie was in the beginning stages of heart failure, I felt my heart drop. As Nikki rushed home to pack a bag, McKenzie and I were taken by ambulance to Arnold Palmer. A million things raced through my head during that ride; having a child with a life-threatening condition changes you.

The doctors at Arnold Palmer began giving her a dietetic to flush her lungs. While they explained the processes to come. I couldn’t believe after just two weeks from leaving the last round of being in the ICU that we were back.We expected complications, we expected hospital stays and knew it wouldn’t be easy but having our baby back in the ICU so soon was like a slap in the face.

The stress and exhaustion causes emotional ups and downs. Sleeping in hospital chairs, skipping meals and showers, crying from fear and exhaustion, constantly on the verge of losing our mind. The doctors decided since McKenzie is unable to gain weight due to her heart condition, she will have a tube placed in her stomach until she is roughly a year old. While we know and understand this will help her gain weight and strength; at what point are we supposed to accept that yet another aspect of the life we imagined for her has changed. 

As I sit in another small room cramped with hospital equipment, I listen to the cries of other children, the constant beeping of multiple machines throughout the hall, the constant beeping of machines throughout our daughter’s room. I can’t help but become discourage and disconnected as I watch the doctors and nurses decide what’s best for our daughter; as I sit helplessly asking questions and voicing concerns.

Today, I relived the pain of saying goodbye to my wife as she had to return to work. Today, I relived the pain of feeling torn between wanting to leave with Nikki and not being able to leave our baby. I watched as she walked away with tears in her eyes, I felt my heart in my throat as I continued to talk with nurses and care for McKenzie. Once the room was quiet again, I broke. The truth is; being a mom teaches you strengths you didn’t know you had and fears you didn’t know existed. Being a wife and a mom teaches you there is only one way to get through; keep going.

While we are still in the cardiovascular ICU at Arnold Palmer, McKenzie’s doctors have created a plan to get her where she needs to be. McKenzie continues to be strong and her doctors continue to make moves forward with her health; Nikki and I will continue to survive through what feels like the worst possible time of our lives today and what will be a distant memory of life in the ICU; another day.  









Monday, July 31, 2017

Bringing McKenzie home


As I recovered on the 10th floor, McKenzie was admitted in the ICU on the third floor. I never imagined the amount of determination I would develop to ensure I was on my feet as soon as possible; by the third day I was discharged. McKenzie spent ten days in the ICU and NICU, the doctors and nurses were amazing with us and her, but that didn't change the pit of my stomach from turning into knots. I never imagined the amount of love I would develop over the next several days as we very helplessly waited for any news on McKenzie's health or discharge possibilities. We never imagined dealing with amount of emotions we were now dealing with. 

Eventually one machine after another were being disconnected; every day a new doctor or therapist would meet with us and overload our minds with information - McKenzie no doubt had the best of the best looking out for her and her future and while we were completely exhausted and overloaded with information - we were beyond thankful for those involved in the care for McKenzie. On Sunday, July 16th McKenzie was discharged

Bringing McKenzie home was a dream come true; she was sleeping so peacefully the entire ride and proved to be just as perfect as we had always imagined. We've been home for three weeks today and she continues to amaze us in so many ways. McKenzie has opened our eyes to an entire new world- a world full of endless opportunities and love like none other. While we have a long, busy road ahead for the health of McKenzie - we will continue to keep our faith that not only her development progresses well but her heart surgery is successful and her recovery is quick. 
It feels like just yesterday we received the down syndrome diagnosis, foolishly we allowed it to completely alter our lives for months. When we saw McKenzie, we saw our daughter; we didn't see down syndrome or heart defects - we saw our beautiful, god given angel. It was in this moment we realized the meaning behind our journey wasn't to cause us struggle but to create an undeniable strength full of acceptance, patience and above all else; love.



Sunday, July 16, 2017

The world of ICU and NICU's

For all the things my hands have held, the best by far is you.

When I was pregnant we toured the ICU and NICU, we wanted to have as much knowledge as we could to prepare for her stay; but the truth is – there was no amount of planning or knowledge that could have prepared us for this. Seeing our babies little body hooked up to IV lines, Oxygen tubes and monitors; watching nurses come and go to check her weight, vitals and heart; it’s the most helpless emotion a mother could ever imagine.

As my recovery from my C-Section began, I found myself rushing the process to have as many visits with McKenzie as possible; they said I needed to walk – so I walked. They said I needed to go off IV’s – so I went off IV’s. I found strength I never knew I had and if it wasn’t for Nikki standing by my side and supporting my every move, I don’t know how I would have or could have ever gone through these last few days.

As new moms, we assumed there would be an adjustment period; regardless of how badly we waited for this, we would both still need to adjust ourselves to becoming moms. When we imagined getting to know our baby, we didn’t exactly picture an infant tangled up in tubes, wires and machines that constantly beeped. Overwhelming love, fear, anger, detachment, and helplessness are just some of the emotions that flooded my heart; I thought I would get through this without a problem, I figured it would only be a few days; but those few days turned into almost two weeks and eventually Nikki had to return to work leaving McKenzie and I in Orlando. I sat by her crib almost all day for three days straight, I wasn’t learning how to care for a newborn like most moms a week after giving birth – I was watching as nurses and doctors entered and left the room throughout the day and night, I watched as she cried, unable to do anything but wait for a nurse to come

The truth is, there are millions of families that go through this (and much worse) – this was our first and McKenzie began teaching us the lessons of parenthood immediately. We learned a lot those two weeks, mostly we learned to deal with life first and ourselves second. We learned that it doesn’t matter how badly we are hurting or how numb we’ve become, all that mattered at that moment was McKenzie- WE learned the act of selflessness and that will help when we return in a few months for her heart surgery. 

Tuesday, July 11, 2017

Welcome, McKenzie.



On July 5th, we packed our bags for Winnie Palmer, it was induction day. We arrived at 10:45am and got settled in our room by 11:30am. The doctors came by, introduced themselves and began prepping me for what would be the wildest 25 hours of my life. Around 5pm they gave me my first induction pill; shortly after I began doing small rolls on a ball to loosen up my hips. We watched television and joked, we ate and took naps. Around midnight I received my second pill; at 1am the contractions began.

After contractions all night, they became so terrible I was taken to labor and delivery. The entire process was touch and go as I couldn't function over the pain. The nurses there were so helpful, and once I got an epidural I was able to calm down.  My water broke at 10:39 am, at 11:30am the doctors said McKenzie’s heart had stopped twice. After flipping me from one side to the next the doctor rushed us to a C-Section. “Are you ready to see her?” They asked as they pulled down the curtain. I sat up as much as I possibly could, trying to see every inch of this beautiful angel that we had been anxiously waiting for. My eyes swelled up in tears as she let her cry out, I couldn’t believe anything that was happening; my life was being held in front of me, my heart and soul were complete.

We saw her long enough for a picture and a kiss and away she went, I knew she’d be ok because Nikki left with her. The time began to stand still as they finished closing my C-Section; I struggled with thoughts and emotions and soon I found myself struggling to breathe as well. I woke up as I was being rolled into the recovery room where Nikki was waiting. I felt my body shaking uncontrollably and soon I was asleep again, and awake and asleep again. A few hours passed when I finally came too, I was upset because I wanted to see McKenzie but I was also so weak. I had gotten sepsis and a high fever during my c-section. I felt so helpless, so sick, so tired and all I wanted was to see McKenzie. In order to see her, I had to rid my fever, so for an hour I sat on ten bags of ice. After my temp was normal and multiple bags of antibiotics (along with a lot of persistence), we were finally able to visit our baby.

Friday, June 23, 2017

The Process Overview


There is no easy way to enter the process of hearing your baby will be born with Down syndrome and a heart defect – there is no word to explain the grief, shock, anger or feeling of isolation. Soon, we found ourselves booked with appointments; meeting with doctors, specialist and genetic teams to gain a better understanding and view of her heart. The overload of information was overwhelming, in those first few weeks, after hearing statistics, talking to doctors and reading about it everywhere, we thought we knew what it all meant but to be honest, we were completely and utterly devastated.
It wasn’t until the third appointment at Winnie Palmer that we finally broke down. I cried on the bathroom floor for what felt like hours, the baby we imagined would be deprived and live a life shorter then what she deserved. The days began to pass and I found comfort in sleeping them away while Nikki spent the nights building things and keeping her mind completely busy.
We were shocked, we became devastated. We were angry, we became resentful. We refused to open her bedroom door, we felt guilty. There was a process of grief as we had to let go of the image we created for our daughter and accept what would be. We began to mourn and let go of the expectations we had developed for her.
Weeks went by before we were able to sit and talk about it, we were overwhelmed. We are still adjusting and find we may still be showing signs of shock, but we have learned from other parents that we will move away from this time of uncertainty to a place of excitement and amazement. We have a lot to learn in the next few months about Down syndrome. We have already started to research and are set up to deliver in one of the best hospitals around. Some of the most important things we've learned are that each person with Down syndrome is a unique individual, and that with recent advances in medicine, education and acceptance, our daughter will live a rich and rewarding life, and will enrich ours as well. While we never expected this to happen it opened our eyes and made us begin to appreciate the health that she does have and the gift of life.
The truth is, we are keeping faith that this will be ok. We spent years waiting for this miracle and will no longer allow a diagnosis to take away the pure joy of our daughter; Mckenzie.

Monday, May 22, 2017

The devastating, lovely baby shower.

Our journey has become the most intense roller coaster of all times.

The last nine months have proved to be the most terrifying months of my life, thus far. I have learned so much in such a short time, some of the biggest lessons have been the lessons of loss. We loss the life we planned for our daughter, we loss our hope and at times faith. I remember just nine months ago when I felt I had everything all figured out, but the truth is; everything changed so quickly.

There are truly no words to describe the pain that shadowed the last few months of our pregnancy. On May 19th, the day before our baby shower; we lost one of our best friends, Ashley. Ashley began our journey with us, she bought our first pregnancy test and lived in the room that is now McKenzie’s nursery. Ashley was our biggest fan and while it’s been extremely difficult to come to terms with her passing, we keep faith she is now McKenzie’s angel and will always look over her. We are blessed to have had her in our lives and we miss her, so much.


Our baby shower was nothing short of amazing, our friends and family came together with so much love. While we mourned our friend, we embraced those who surrounded us and showered our baby with so much love. We were getting closer to our due date and beyond ready to meet our little girl. We are blessed to have such a strong support system and both friends and family that love so much.  Nikki was perfect, fixing everything, building everything else and working so much extra to allow my rest.








Saturday, April 22, 2017

The new plan;

We have been consumed with appointments and news throughout the last few weeks. After Halifax in Daytona found our daughters heart defect, our pregnancy went from normal to high risk. Dr. Cortez transferred most of my care to Winnie Palmer in Orlando where we have been receiving ultrasounds and preparing for a high-risk birth. Today, we had our first fetal-echo appointment across the street at Arnold Palmer. Arnold Palmer is basically attached to Winnie and just as big, beautiful and overwhelming.

I remember when I use to get excited for our appointments, and now I can barely tolerate the continued undesirable news these appointments bring. Today, our fetal-echo confirmed our daughters heart defect. "Complete Atrioventricular Canal Defect" "Heart Disease" "Congenital Heart Defect", genetic related, down-syndrome and eventually everything the doctor was saying became background noise. 

There's no way to explain how much my heart hurts. I have found myself unable to accept this as our new lives to be. Are we strong enough to withstand the storm this will cause? Will our baby need open heart surgery right away? Will I be able to care for a baby with so many medical needs? I barely understand the medical terms that were explained today. The emotions are overwhelming and every ride back from Orlando is silent as we both are finding our own ways to digest the news. 

Nikki has overwhelmed herself in projects, I have began reading and writing more frequently. I think the hardest part of this all is the ignorance. We are unaware of what to expect and while we are trying to move forward with our hopes and dreams, it's difficult for those around us to understand our mindset and this has created a barrier that I'm not sure will ever fall. 


Tuesday, April 18, 2017

Entering the unknown

It's been weeks since we found out about the possibility of McKenzie having down syndromeWe have been quietly dealing with our thoughts and attempting to understand what exactly is happening. We have had the options to have an amniocentesis done, however it entailed risks we aren't willing to take. The week before our due anatomy scan we were sent to Halifax Hospital to meet with specialists to determine measurements and document any other markers that indicate the possibility of Down Syndrome

The ultrasound was the first one we had since the doctor called. It was beautiful, she moves so much! She’s so active! Her nasal bone is perfect, her arms, legs, toes, fingers, weight, body is measuring perfect. Maybe this was all just a big false; then the doctor came in. While he reviewed all of her perfect measurement’s and results, he also announced the one image imperfectionher heart. I instantly became numb.  


After several trips to the doctors and multiple syringes of drawn blood, we had to wait. It was second nature to believe these tests were wrong; after everything we had done to get here; how could this be happening? Four long, dreadful days went by and the phone rang with the results; The blood work determined there is a 99.9 percent chance your child will be born with Down syndrome.

After hearing the results of the blood work we were left in a pool of emotions. When we got pregnant the first thing we thought was what the gender would be, what the name would be and how excited we were to meet him or her. When we got pregnant we instantly began making plans, what would we involve her in? What sports would she play, if any? Would she be smart like Nikki or stubborn like me? Would she be funny like her grandpa's or loving like her grandma's? We had so many expectations for what her life would be and found ourselves grieving this ideal life we had so anxiously planned.

A cycle of negativity quickly began;  “What could I have done to prevent this?”, “What did we do wrong?”, “How am I going to manage this change?” On top of dealing with these questions of, “Why me, why now?” comes shame. Not shame of the child, but shame of the emotions we were feeling.


Thursday, March 9, 2017

Gender Reveal



Boy or girl? a question we've pondered well before our positive pregnancy test. As time slowly creeps by, we anxiously await the day we can do the gender reveal. Will we throw a party or announce it individually? Will we tell everyone right away or wait and enjoy the results first? The doctors office insists on waiting until we're 20 weeks along, so we decided to hire an ultrasound tech. (Bun In The Oven Sonography) to come to our home during our sixteenth week instead. The tech. April set up her equipment in our living room, I laid on the couch while Nikki stood at my head. The ultrasound began and I felt my heart literally drop. 


April took a few minutes before telling us the results, but without a doubt it was clear as day; it's a girl.



The emotions of the gender reveal were beyond overwhelming, it made everything feel just a little more real. I looked at Nikki who wore a smile from ear to ear, we were having a girlThere are no words to explain the emotions this news brought us, after everything we'd been through - we made it and now we have a daughter to join us in this adventure of life. 

As soon as April left we rushed to the store to buy a little sign and some pink converse shoes – we wanted to tell the world! We took a photo and sent it to family and friends. We took our new pink baby converse shoes and visited my Grandparents, (They were thrilled) because the truth is - without them, we would never had been able to do this. 



The next step was the nursery; Nikki made this her personal project as she began wall designs, building toy boxes, shelves, tables and so much more. If I knew one thing for sure it's that our daughter will have the most beautiful room I ever had seen. 


Friday, March 3, 2017

We believe in faith; I think.

Faith has been important for both Nikki and myself during our journey, at one point it was all we had. After we wait to find out the gender of our baby to be, we continued to prepare. There is so much we've waited to do, so many plans we were beginning to make. Of course, life has become overwhelming with many doctor appointments but they are all for the best, this we know.

As crazy as things have been, these past few weeks have been nothing short of perfection. Our baby is growing as my tummy has gotten much bigger and feeling life inside has been life-altering

While we’ve prayed for this time in our lives, we certainly did not expect it to become so chaotic – not yet at least.

The doctor called a few weeks before our anatomy scan to go over blood work results. It was just another afternoon as we prepared for the work night ahead. When the doctor called, he began rambling on about this result and that result. Then he said something that stopped my heart instantly; Down syndrome. I can't recall much after hearing the probability statistics and next steps that needed to be taken. The phone call was short, but I felt like time had frozen and in that very moment I struggled with an overwhelming amount of fear.

When the call ended, I sat on the steps and got lost in my thoughts. What is down syndrome? How would this change our lives? Our childs life? There were so many questions, so many concerns and so much doubt that suddenly invaded our lives.

The following weeks would prove to test our faith in every way we never expected.