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.