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!