All About Makenna: 12 Month Update

 

This month Makenna has shown so much growth!  She has learned to solidly sit up and very rarely falls over.  She can get in and out of side sit and even spin in circles while she is sitting down!  She can also scoot a little bit while sitting and can lean forward onto her hands, almost into the crawling position on her own.  She still can't roll over or get into and out of siting on her own, but if I put her in the crawling position she can maintain it.  She is thankfully doing a little better with tummy time and will lay on her tummy for 1 or 2 minutes at a time without crying.  I think the shunt is really

helping. 

Fine motor skills continue to be one of her strengths.  She amazes me with what she is able to pick up.  She can pincher grasp small things such as pieces of hair or quinoa, and can pick up small and large toys with just the tips of her fingers.  She is also great with problem solving.  She will look for toys under blankets and if she sees a toy on top of a blanket (out of reach) she will pull the blanket towards herself.  She knows how to play with toys correctly (putting balls on her spinning giraffe, pushing buttons, throwing balls, hugging/kissing her dolls, "reading" books, and so on) and will look down if she drops a toy.  She is really starting to figure the world out. 

She is also still a social butterfly.  She is very entertained with games such as peekaboo and patticake, loves being tickled and thrown in the air, and really enjoys being read to.  She loves pointing, especially to pictures in books, and thinks it is funny when people dance, sing, or make silly noises.  She is so sweet.  She will share her toys and can blow kisses (even says "Mwah" when she does), she likes to clap, wave, and loves to mimic sounds.  She "talks" nonstop.  I've never heard a baby babble as much as she does.  She doesn't say many words, but she tells very lengthy stories and jibber-jabbers like crazy. 

As for food she is still nursing on demand and loving a variety of things.  She pretty much eats what we eat as long as it isn't spicy or a possible allergic food (nuts, eggs, fish, so on).  Her favorites lately are asparagus, meat (especially turkey and ground beef), canned green beans, watermelon, and bread.  She has started to refuse to eat anything off of a spoon (even grown-up food like apple sauce or mashed potatoes), she is independent and only wants to feed herself. 
She has also developed preferences for foods and discovered that if she doesn't want to eat something she can carefully remove it from her plate and drop it on the floor.  She routinely picks out the green beans from her mixed veggies and drops them, it is so cute, but we try to discourage it.  We also serve her meals on plates with 3 to 4 different areas for food.  She is so funny, she requires that ever compartment has something in it and she won't eat until each one is full.  This month she also mastered the art of drinking from a straw and really enjoys drinking plain and coconut water, I'm hoping to hold off on introducing her to the exciting world of sugary juices as long as possible!  Thankfully she seems to really like coconut water and it is all she knows, so she's not complaining!

 

Medically she is also doing well.  This week we went back to Gainesville (the 10th time this year)for check-ups with her neurosurgeon and pediatric surgeon. They did an head MRI, chest x-ray, and an echocardiogram.  The MRI showed her shunt is working and her ventricles are slightly smaller.  Yay!  The x-ray looked good and showed her right lung (the effected/smaller lung) had more aeration then it did previously.  Dr. Kays also said that Makenna's right lung is kind of quirky because the top lobe looks just like pneumonia.  He said even he would look at the x-ray and think she had pneumonia, but she doesn't it's just her funky CDH lung.  He said he isn't too worried since her o2 stats are consistently 100.  As for the echocardiogram, her ASD (patent foramen ovale versus) and her pulmonary hypertension appear to be resolved!  Overall good news!!




Height:  30 inches

Weight:  20 pounds 2oz

Eyes:   Brownish-green

Hair:  Light brown, getting thicker, and shockingly long!

Clothes:  Mostly 12m-18m, but she's skinny enough to wear her 3m pants as capris!

Diapers:  Still using cloth, but she fits in size 3.

Food:  Still loving her mommy milk! She also likes asparagus, noodles, turkey (most meat really), and bread.

Sleep:   Still getting up many times a night. 

Shoes:  Her feet are 3.25 inches long.  She fits size 2 for length, but her feet are too chubby for them.  Size 3 are way too big and mostly all fall off. 

Favorites:   Makenna loves her baby dolls, balls, "little people," and things she's not supposed to have (cell phones, remotes, pieces of paper, etc.)

Makenna is ONE!!!

 

A video montage of my special girls first year!!

 

I don't know how it happened so quickly, but as of 10/10 our sweet girl is officially one year old!
 The day your child is born is inevitably the best day of your life, and it was for me too; however, even though I am good with words, I'll never quite be able to put it to words the emotions this day stirs up.  I can't explain how it felt to carry my daughter for 9 months knowing there was a 50/50 chance she wouldn't ever come home.  Or how wrong it seemed to give birth and have her whisked away before I even really got see her.  I can't explain the pain that comes from seeing her weak little body lying naked on a table with dozens of lines and wires everywhere or the sadness of not being able to hold her for a month.  Most of all I can't explain how it feels to be robbed of the idealistic birth experience that so many others get to have.  However even with all those emotions, 10/10 was the day my perfect 10 was born.  She came into this world more perfect than I could have ever imagined and I love her more than I ever thought possible. 10/10/13 was as wonderful as it was scary.  As special as it was frightening, and it is the day a very sweet miracle was put on this Earth to do great things.  

This year Makenna has kept us on our toes.  She has given us a million reasons to worry, but also a million reasons to smile.  It has been so rewarding and fun to see her learning, growing, developing, and thriving.  She is incredible and continues to amaze everyone.  She went from being on ECMO with 50% liver up, to coming home in just 6 weeks, cutting her expected recovery time of 3 to 4 months in half!   She started out in the 2nd percentile for weight and they said to expect her to create her own curve, but she has eaten her way into the 35th percentile!  They said to expect her to be on reflux medicine for a long time, but she is about to wean off of them!  She is a true fighter.  She is beating the odds and giving hope to so many people. She proves everyday that anything is possible.  Her motto has always been "I don't want easy, I want crazy" and while at times we wish things were a whole lot less crazy and a whole lot more easy, every event of this year has helped shape her into the adorable little person she is today.  I know as time moves on and she has more life experiences, CDH, hydrocephalus, doctor visits, and therapies will be just a drop in the bucket.   She won't remember that I didn't see her until she was 12 hours old or hold for 28 days. She won't remember her 6 major surgeries, 10 days on ECMO, 42 days in the NICU or 3 return hospitalizations.  The 3 months on oxygen at home, 6 hour ambulance ride and 10 return trips to Gainesville will be like they never happened at all.  She won't remember weekly doctor appointments and therapies, monthly shots, her 7 MRI, 3 CT scans, countless X-rays, or realize how scary this year was for us.  She won't realize the pain, fear, and worry we felt every week as we measured her head and watched it creep 5 lines above the 98th percentile.  She won't get how scary it was to wake up and find her not breathing in the middle of the night, or how terrified we were every second that she would get a respiratory infection that would be catastrophic.  For that I am forever thankful.  But I hope she does realize how much we love her, how hard we fought for her, and that despite the fact this year was so hard and so isolating I wouldn't change it for the world.  Everything got us to where we are now.  She is here, she is amazing, and she is everything I ever could have hoped for and so much more.  I hope she always knows that I love her to the moon and back times a million and would relive this year one thousand times over if it meant I got to spend those one thousand years with her in my arms.  I hope she grows up and proudly owns every one of her scars.  I hope she takes pride in her past and that even though she doesn't remember the journey or struggles, she knows that those bravery marks are indications of how strong she is.  They are what set her apart from others.  They make her unique and special.  They represent how hard she had to fight.  I hope she realizes that she is my hero and proof to the world that miracles happen!

 

 

Makenna's First "Bee Day"  Party!