What a year it's been, so far.

Hi Friends, So sorry for the lack of updates. McKenzie's health has taken over lately, but we're happy to report she's on the mend and things are looking up for the first "real" time in her GI history.

Earlier last month, McKenzie's health continued failing as we began weekly visits to GI and the emergency department, again. After the inability to get anywhere, we made the decision to seek a second opinion - Thank God! (Don't get me wrong, we love A.P.H but something wasn't right - we needed someone to do something.. more!)

I took McKenzie to N.C.H 30 minutes from A.P.H and she was admitted - admitted with low blood sugar, high liver enzymes, severe protein calorie malnourishment (could have caused or already began the process of organ failure) blood in her feeding tube and severe dehydration. McKenzie had the longest week while doctors ran tests, exams and ultimately were able to help renourish, rehydrate and figure out the cause for the on-going symptoms and a plan moving forward.

McKenzie began feeling better, almost immediately! Since then, she has had many firsts. She has sat unassisted, drank from her sippy cup, wants to crawl, wants to play - she no longer seems to be in the haze she seemed stuck in for so long. While we are on the road to recovery, she still has a long road of GI obstacles to face as her pancreas, liver, stomach and intestines require work.

This last admission took its tole on us, as her parents, thus my reasoning for being so absent, but I hope to soon update more frequently as we settle back into a solid routine.



                                           By the way - McKenzie is getting glasses!!

31 Days

In the last six months, multiple people have advised us that keeping McKenzie in a bubble isn't "good for her", "won't help her build an immune system" or they have voiced how unfair, unfortunate or inconvenient her health restrictions are.

So, I invite you to learn the reasons for McKenzie's "bubble".

McKenzie has Trisomy 21 ( down syndrome) and CHD ( congenital heart disease).

• Children with Down Syndrome have abnormalities in their immune systems, as well as low muscle tone. The abnormalities in the immune system increase the risk of developing autoimmune disorders, pneumonia, other respiratory infections and gastrointestinal infections.
• Children with CHD have weaker immune systems than the average child. They can end up in the hospital for illnesses that others recover from on their own.

McKenzie didn't have the flu, or even a cold - McKenzie didn't get sick because she's in a bubble or restricted.

On December 6th, McKenzie went under anesthesia for a minor feeding tube operation. Anesthesia weakens the immune system and suppresses automatic functions such as movements of the digestive system. The weeks that followed this procedure, McKenzie caught a "bad germ", this caused her small intestine to stop functioning properly and the bacterial then began to grow. The result of this infection..

31 days.

• 7 calls to on-call specialists
• 6 doctor visits (1.5 hour drive each way)
• 1 echo-cardiogram to clear her with the cardiologist
• a month of zero weight gain
• 1 e.r visit
• 5 days in the hospital
• 1 day of IV fluids
• 8 medications - 3 antibiotics.
• 4 blood draws
• 2 radiology ultrasounds/exams.
• 2 x-rays
• 3 weeks of irritability and discomfort
• 1 week of being completely lethargic.
• Daily sanitation
• Multiple loads of laundry
• Endless nights of research

Ultimately, McKenzie's formula was changed to an amino acid-based, hypoallergenic formula that she could tolerate. She now has a second bag to feed with that allows "venting" air from her stomach during her feeds and multiple follow-up appointments.

McKenzie is our world and her bubble is to protect her. We base every decision we make on what we feel is best for her. When you become a parent, you'd do anything to keep your baby / child safe. When you become a parent of a baby / child with special needs, you face the ultimate fight. The fight for understanding and patience. The fight for services and knowledge. The fight for comfort and stability. You face the fight within yourself, to ensure you've left no stone unturned, to ensure you've done anything and everything in your power to give your baby a quick recovery and prevent them from becoming ill.

Oh, Little one!

The alarm sounded at 6 AM, not my alarm but McKenzie's feeding machine. I almost couldn't believe it was morning, we were up most of the night with McKenzie (for the first time ever), she was so uncomfortable. It was 29 degrees with ice on my windshield while I attempted to warm up the car so we could head to see GI in Orlando (over 1,5 hours away). So, we bundled up and headed out.

GI confirmed McKenzie is indeed teething, how exciting! They also confirmed she is sick, how discouraging! McKenzie has an intestinal infection, a mouth infection and possible new food allergies. So, she has a bunch of medication and we did a stool study in hopes of finding out more. Its looking like she will be kept home and away from others as much as possible during cold and flu season - we want her to build an immune system, but not while her heart is still trying to heal. I know the summer should bring lots of fun, lots of development and hopefully no illnesses!

While I dislike seeing McKenzie sick, I am thankful she's home. It seems like it wasn't long ago when every time she got sick, she got admitted to Arnold Palmer. We never really know what to expect, we never really know when its "safe" to put away out emergency hospital bags. I think the hardest part of it all is knowing at any moment, things can change. This week she's home, but what about next? I am thankful her heart surgery is done as it's allowed less admissions - but the fear of her being admitted never really goes away as she's still a heart patient, still has an obstruction to her kidneys and still deals with dehydration. 

Becoming parents was life-changing in many ways, but becoming parents of a child with medical and special needs has changed who we are as individuals, how we think, how we live. I wouldn't change our lives with McKenzie for the world - but there are some days I wish she would catch a break for her own sake! Oh, little one - get well, you've got growing to do!

The New Year

As we entered 2018, we were quickly reminded of McKenzie's health. The last few days have been full of uncertainty as she has had several fits of discomfort and recently stopped tolerating her feeds.

Of course we'd like to imagine McKenzie is teething and these are normal symptoms of such; however, with a baby that has a history of medical concerns and a dire need to continue gaining weight we are returning to Orlando earlier than expected for GI to check her out.


At times, having a medically needy child can be hard. It's not hard because of their needs, or because of the attention it requires but because of those who surround us. Time and time again we find ourselves explaining why we keep her isolated during cold and flu season, why she's not just a baby fussing, why we can't just "give her a bottle", and why we do things the way we do. Sometimes, it's hard for others to truly understand her underlying medical concerns that often cause us to isolate her, often her fussing results in a diagnosis of some sort and her inability to just "take a bottle" as she's been tube fed almost her entire life. As McKenzie's parents, we are also teachers, doctors, therapists and so much more.

As the first week of 2018 is half way through, we are reminded to always be on our toes when it comes to McKenzie's medical conditions. McKenzie is just a baby, but she's a baby with a lot of medical needs that should always be ruled out before assuming she's just being "a baby". As we move forward, we remind ourselves that we know what's best, we know to trust the gut-feeling. We also remind ourselves that others love us, love McKenzie and only want to ease our uncertainty the best way they know how and we are thankful. We are blessed, but ultimately we will always know what we need to do to keep her well.

As of today, I know McKenzie needs medical intervention - this can be enough to find a cure to her new discomfort or a cure to our new concerns. We hope 2018 will bring growth, stability and comfort for McKenzie and others on similar journeys, we also hope 2018 will bring peace, comfort and love to those surrounding us.

                                               Happy New Year to you all!

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.