Merry Christmas!

Christmas has always been my favorite holiday. I remember last Christmas when I imagined how amazing this year would be with our new baby. McKenzie's first Christmas was also the first Holiday she was well enough to visit with Family. We were blessed to have spent Christmas eve with great-grandparents, grandparents and uncles, Christmas morning was spent with us and McKenzie opening gifts from Santa and Christmas evening was spent with Grandparents, Uncles and their significant others. 

McKenzie got lots of new toys and clothes! She was in a great mood - even though her gums have been driving her crazy! While I always imagined what life with McKenzie would be, I never imagined so much love 

2017 has been a tough year, but we are so much stronger because of it. The beginning of 2018 will be busy with appointments, but we are hopeful they all go well and McKenzie can continue thriving, developing and being a baby!

Two months later

Bringing McKenzie home wasn’t what we “planned”. We didn’t get woken up every other hour, she slept 13-14 hours in a row. We didn’t have visitors often because stimulation would cause her to breathe heavy. We didn’t take her out because she would have episodes of sweating. We didn’t bring McKenzie home, we brought her heart diagnosis home.

Today it's been two in a half months since McKenzie's heart was repaired, We have found the other side and looking back, I couldn't have ever imagined we'd make it. 

McKenzie's heart surgery recovery was a challenge, but she has done great and recently had her second g-tube surgery. After barely gaining 2lbs in four months, McKenzie has finally started to gain weight and is almost out of new born diapers. She has rolled over for the first time, laughed for the first time and is learning to sit up and even drink from a bottle. 

As the new year approaches, we reflect on what was the hardest year of our lives. The day McKenzie was born, we entered a world of unknown. There have been so many sleepless nights and busy days, there has been so much fear, sorrow and most of all - faith. 

McKenzie has opened the doors to a world we never knew exist. As she grows and develops, we are overwhelmed with relief, happiness and a determination to show the world how amazing she truly is. We have learned so much and can only hope to pass some of our knowledge onto other families. 

We encourage you to follow us on Facebook as we use our experience to create awareness and show the world there's nothing down about McKenzie!



www.facebook,com/nothingdownaboutkenzie

Third Surgery

 When McKenzie was five weeks old. she received a G-Tube. I never imagined feeding our baby through a tube, or giving her sponge baths but this is what she needed so this is what we had to do. In October she was supposed to have her G-Tube changed to a different type of feeding tube, however, due to her heart surgery being unexpectedly moved up she had to wait for her GI. On December 3rd, we took McKenzie to Arnold Palmer for her Micky Button placement (different type of feeding tube). 


During her surgery, the doctor is also going to do an upper endoscopy to check for food allergies and any irritation in her stomach that may be causing blood in her G-Tube. 

Even though we get to take her home after surgery, it never gets easy to hand her to doctors/nurses and watch them walk away. 

Thankfully, the surgery was very fast! McKenzie got taken back and before we knew it, we got an update saying she was done! The doctor came and explained his findings, which was irritation in her stomach but said she did well and we could continue trying to feed by mouth but best of all, we can give her a bath again! 

Since birth, McKenzie was only home long enough to have one bath. A few days after her surgery, we were able to give her a bath and she loved it! Sometimes, it's the smallest things you'd never image missing until you aren't able to do them. Giving McKenzie a bath again was so exciting!

Oh Milestones!

 When we were told  McKenzie would have Down Syndrome, we were also told she would have delayed development. When McKenzie was born, regardless of her hospital admissions and surgeries she has accomplished so much! She still has some ways to go, but we truly are so proud of all she's done and continues to do!





McKenzie isn't able to sit unassisted yet, but she loves to try! We spend countless hours sitting with her and helping her build muscle in her neck. It's amazing the determination she has and the strength she shows. We are looking forward to beginning Physical Therapy with her in hopes she wont fall too behind.

McKenzie's GI doctor sent her for a swallow study before allowing us to begin bottle feeds again. The study is to see if she has aspiration when she eats by mouth. I took her to Arnold Palmer and was so relieved when the speech therapist knew McKenzie as she worked with her during her stays at Arnold Palmer. McKenzie has a weak jaw but did great, she passed the study and we got some great advice on feeding her. After her GI appointment, we stopped by the baby store and picked up a high-chair. This chair will allow her to sit up and eat which also allows me to work with her jaw. 

We had to stop McKenzie from tummy time after her heart surgery but recently got approved to start again. She has already started rolling over, but can't seem to get her other arm from underneath her to make the full turn. She loves playing with her toys - she also loves her crib!

Oh Kenzie Gums! Doctors told us McKenzie wouldn't teeth until she was 7-12 months old, but after her heart surgery she started drooling and during her pediatrician vaccine appointment, they said her gums were red and preparing to start the teething process. It's so amazing to see her developing and growing. I couldn't picture this happening before or even immediately after her heart surgery, but I am so glad she is!

McKenzie's First Halloween & Thanksgiving!

McKenzie was a Ghost for her first Halloween, she spent the day scaring doctors at the Heart Center while at her follow-up appointment with her cardiologist. We didn't bring her around family as we are waiting the six week period to avoid any infections or unwanted illness. After the cardiologist we headed home and watched Halloween movies on the couch.

We spent Thanksgiving at home as McKenzie had gotten a small respiratory infection with a fever. So, she spent the day resting while Nikki and I made our first Thanksgiving dinner. We didn't invite family over to prevent McKenzie from getting more sick or overwhelmed. 

When I was pregnant, I was so excited McKenzie would be here in time for the Holidays. After she was born and instantly needed so much medical attention, I realized my concept of what her first Holidays would be would need to change. McKenzie had her open heart surgery on October 3rd, this caused Halloween to be in the middle of her recovery. A few days before Thanksgiving, McKenzie was taken to Arnold Palmer ER for an unexplained fever, the doctors said she was in the beginning stages of a respiratory infection. Thankfully, we still dressed her up and got a photo of each holiday and hopefully by Christmas she will be able to visit with family.

Home away from home.

It's hard to believe she's been home for a month now! Today is the longest she's been home since she was born. Since birth, McKenzie has been admitted to Arnold Palmer four times. We haven't kept her home longer than a few weeks at a time and honestly, our lives are chaos. Living an hour in a half away from the only hospital that will care for her is stressful, I've learned to keep a bag packed and handy for random trips and admissions. 

Overall,  McKenzie had heart failure and G-Tube placement, she spent 10 days in the Cardiovascular ICU. One week later she spent four more days due to dehydration from her heart medication and an intolerance to her formula. Three weeks later, she spent another week for a 102. temp and a UTI which caused an obstruction to her kidney. Three in a half weeks later, she spent 8 days for her heart surgery. 

Having her home is almost like a dream - Sometimes I wonder if its safe to put my bag away or if she will end up needing to go back. The hardest part of having a baby with medical needs is the constant worry if her behavior is "normal" baby worry or if it's something related to her diagnosis. 

The hospital has been good to us and even though we've become very familiar with the staff,  I'm just hoping shes home for good, I feel like her infant months were taken away by her medical needs  - I just hope her toddler years aren't the same. 

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. 

McKenzie's right leg still has a blood clot so I have been giving her the Lovanox shot in the morning and evening, I never imagined giving my three month old a shot - let alone twice a day everyday for weeks. I don't know how long she will need it, I don't know how long until she begins to feel better but I do know sleep doesn't come easy.

              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. 

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. This isn't a life we imagined - oxygen, medication, feeding pumps, monitors, weight checks,x-rays, blood draws, surgeries and praying beyond belief. When McKenzie's discharged, her recovery wont be complete as she will still be a risk for illness and infection. She will need shots twice a day for blood clots and medication around the clock. But, 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.

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 4-6 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.

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 wait to meet who she will become. I couldn't be more proud of her determination and full of life personality.

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 gave us an app called Ease and 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.

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.  

Bringing McKenzie home

After Nikki returned to Daytona for work, the hospital was kind enough to put me and McKenzie on the 11th floor, it was the first time Nikki and I had ever spent any time apart and while it wasn't home, the room was comfortable as I was finally able to eat, sleep and shower while still being with McKenzie.

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 two weeks today and things have been amazing but challenging. McKenzie sleeps through the night, but often turns blue. I have found myself laying in bed watching her bassinet to make sure shes still breathing. During the day she won't take much from the bottle and so we changed her formula. It's hard bringing home a baby, but its really a challenge bringing home a baby with a heart defect and down syndrome. 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.

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. I learned so much from the nurses, but so badly wanted to care for my baby on my own.

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.