All About Makenna: 13/14 Month Update

Makenna is officially 14 months old!  It amazes me how fast my baby is growing up.  In fact, some would even classify her as a "toddler" now!  How is that possible?

You may have noticed that I skipped her 13 month update.   That is because thankfully her 13th month of life was so uneventful that an update wasn't really necessary!  Literally nothing changed that month...which is fine by us! It is refreshing to get a little break from "crazy" every now and then.  We were happy that she just continued getting better and stronger at everything she had been doing.  That alone was enough to thrill and impress us everyday.



Month 14 on the other hand has been far more eventful.  It had it's share of ups and downs, but the best thing about this month was the fact she hit a special milestone---moving!  She still can't roll or crawl, but my clever little sweetie has mastered the booty scoot!  It is so wonderful seeing her scoot around and she is enjoying that fact she can finally go where she wants to go.  It has also brought the stress level in the house way down.  Before it was impossible to get things done around the house because it meant Makenna had to sit in the same spot for the entire time we were working.  She couldn't move unless we moved her, couldn't play with new toys unless we gave them to her, and let's face it, no 13 month old is going to be happy in that situation.  So she was getting increasingly fussy as time went on.  It's not like a 5 month old who can't crawl/roll/move, 13 month olds have desires and wants.  Their minds are programmed for exploration and independence, they don't like staying still!   So basically to do anything around the house I pretty much had to carry her around with me or listen to her crying and whining until I could come back and "recuse" her from her isolated boredom.  It was exhausting for both of us, and Rex too since he had to come home from a long day at work and do all the chores I couldn't do while holding and entertaining a baby.  But now it's so much better.  While I periodically get things done she can scoot around, moving from toy to toy.  She is enjoying the Christmas tree and we even turned the office into a playroom, so now she has more space to spread out!  Physically she is also getting stronger.  She can stand up while holding onto toys for short periods of time and if she is seated on the edge of a step she can usually lift herself into the standing position.  She can't standup on her own though, so when she does this I have to be there to catch and support her before she tumbles. One thing we also noticed this month is that Makenna gets unusually upset or scared when she tumbles over.  She isn't like most babies that shake it off and keep going.  If Makenna tumbles, falls, or bumps into anything, she completely breaks down into hysterics to the point that she has trouble catching her breath and is difficult to console.  She likes to be in control of her movement at all times and if looses control, even for a second, she is overcome with panic and fear.  We are working in PT on desensitizing her to the fear of falling because it is really holding her back from learning to stand, creep, crawl, and walk.  She also still can't go from laying down to sitting up, so this is also something we are working on in PT.

 

Another physical thing that has changed over the last two months are her teeth!  On her first birthday she had her bottom two teeth.  A week later her 3 back molars cut through, and then a week after that she got her front left tooth (6 teeth total).  Leave it to my silly girl to get her back molars before her front teeth!  Since 13m she hasn't gotten any new teeth, but I can feel another round of 3 about to cut through.





Fine motor skills continues to be one of her strengths.  She gets better and better at playing with toys each day.  It amazes me how quickly she learns to use each new toy she's given (playing the xylophone, throwing balls, hugging babies, pushing buttons, etc).  She loves to "read" stories and pretty much chooses books over toys every time.  Now that she can scoot, I often I will find her sitting on the floor with a book "reading" out loud to herself, turning pages, and pointing to the pictures.   She has delays with many OT type skills though, so they decided to begin giving her occupational therapy once a week.  This will help her learn to put objects in buckets, stack blocks, drink from open cups, use crayons and utensils, and those sort of things.


Communication during month 13 seemed to come to a screeching halt.  She stopped saying all of her words (including mama) and signs.  She continued to babble and make noises like crazy, but would just whine or point much of the time.  It was really worrying me, but my mom and her physical therapist both said that that often happens when kids are focused on another area, such as gross motor skills.   Thankfully they were right and now that Makenna is scooting she is back to talking again.  She can say mama, mom, hi, hey, and go.  She can also sign want, more, all done, I don't know, and hi/bye.  They have also decided to up her speech therapy to weekly now to help her continue to expand her vocabulary and learn to drink water without choking.  Makenna also genuinely communicates love now.  She loves to give spontaneous kisses and hugs (without being asked) and will often blow kisses when asked.  She gets exciting when her daddy comes home from work, and loves to FaceTime with her Grammy and Papa each night. She also constantly points to the door and says "go."  She loves getting out of the house to go shopping or for walks and has started to handle being in the car a lot more for short periods of time because she realizes it means we are going somewhere.  Makenna is also a very headstrong little girl, she already knows what she wants and doesn't like being told not to do something (when she is told "no" she will often look at you and scrunch her nose in dissatisfaction); however, she will almost always comply when we tell her to keep her hands off or not to do something.  She really just has the sweetest most sociable little personality.  She is a very loving and gentle baby.  She is also very sensitive to the feelings and emotions of others.  She makes friends everywhere we go and continues to inspire others.  She is also very calm and gentle towards things.  She doesn't hit, push, or pull things, but rather approaches everything in a sweet rather delicate fashion, I even let her play with regular (non board) books and my pop-up books because she is so gentle. 

Medically this was also a busy month!  She is still not sleeping through the night and wakes up every 30-60 minutes all night long. Most nights she goes right back to sleep after a wake up, but a couple nights a week she will stay up for 3-4 hours straight in the middle of the night.  In hopes of figuring out what is going on, she and I spent the night at the child neurology center several weeks ago.  They hooked her up to their electrodes and did a sleep study to analyze her brain waves and breathing while she sleeps.  We haven't gotten the results back yet, and the anticipation is killing me.  Part of me hopes they find a reason so that we can fix it and sleep better, but at the same time, I really hope there isn't a neurological reason.  Kids with hydrocephalus are prone to seizure in their sleep and also sleep apnea, both things I hope we don't have to deal with.  I hope we can eliminate both of those and discover it's just a bad habit she will grow out of!

This month she also had an allergy scratch test to officially determine if she is allergic to anything.  From that test we discovered she is pretty much allergic to everything.  Her list of allergies includes dairy, soy, corn, wheat, eggs, carrots, and apples.  We know she has severe reactions to milk and moderate reactions to carrots, apple, and soy, and she's never had egg...so we are avoiding all of those; however, corn and wheat we are just monitoring to see if she has any reactions.  So far she hasn't.  The pediatrician said to just continue allowing her to have them until her body tells us she shouldn't.  Fingers crossed it never will.  We have been limiting the amount of corn she receives though by not giving it to her directly.  She might have a little corn starch in a waffle or something, but we aren't giving her actual corn.  It's been a challenge to find a variety of toddler appropriate meals that fit within her diet parameters.  She is a little bit picky about texture and that really complicated things further.  She doesn't like to eat things that are too slimey such as bananas, peaches, and pears. She also won't use her hands to eat anything that would typically require a spoon, such as chili, mashed potatoes, or stews, so since refuses to allow us to spoon feed her, all of those food typically go uneaten.  Thankfully she is doing great for weight and getting the nutrition she needs.  We are working on teaching her to use a spoon, so once she gets the hang of that it should open up more options.

This month we also had another medical scare that landed us back in an ambulance on the way to Gainesville.  Makenna had been a bit more fussy than usual all day and went to sleep at 5:30pm (instead of 7).  She slept until 9 (3.5 hours straight..absolutely unheard of for her) and then woke up screaming.  I tried everything to calm her down, but she refused to nurse and didn't want to cuddle or anything.  As I began walking her around the house her body got really stiff and she refused to bend her legs at all.  I remembered that stiff joints, being irritable, and sleeping more than usual were all signs of a shunt malfunction, so I tried calling Shands on-call neurosurgeons.  I guess it was a busy night (the Tuesday before thanksgiving) because I couldn't get anyone to answer (that's never happened before).  So we decided to take her to the emergency room.  We went to get into the car and discovered that the key was missing and the spare didn't work...so her carseat was locked in the car.  We spent 30 minutes searching for the key, and as we did her screaming got louder and louder.  Finally we gave up on the keys and called an ambulance to take us to the hospital.  As soon as they arrived she started throwing up, another sign of a shunt malfunction.  By 10:30 we were at the hospital and my poor baby, still screaming, was being poked and prodded once again.  Two blood draws, a urine cath, and a CT scan later, the small country hospital had done all they could do.  The CT scan showed she had "marked hydrocephalus" but the radiologist they use in Tampa couldn't see her previous scans and had know way of knowing if the marked hydrocephalus was Makenna's normal or if it meant there was a problem with her shunt.  So they called Shands and Shands said they wanted to see her.  We were great with that because we love it there and if anyone is going to be entrusted with our child's brain, it's them.  Unfortunately rainy weather made it impossible to fly to Shands, so we had to spend the night in triage at the local ER until an ambulance was available the next morning.  10 hours later we began the 5 hour drive to Gainesville.  Thankfully though by morning she seemed to be getting better.  She wasn't crying, but she also still wasn't bending her legs.  Anyway, once there, after another excruciating blood draw and unsuccessful IV attempt, they determined her shunt was functioning properly.  They decided not to admit her because of all the germs in the hospital and instead asked us to spend the night in town and monitor her ourselves.   We don't know exactly what happened, but thankfully she is doing fine now.  Either way it worked out because we were able to spend the day before Thanksgiving with some of the people we are most thankful for!  Thanksgiving day we drove home, stopping to eat our Thanksgiving dinner at the same Ruby Tuesdays we went to on the way home from our consultation visit with Dr. Kay's while I was pregnant.  We might not have had the feast we planned for that day, but it didn't matter because we have Makenna.  The last time we ate there, there was a 50/50 chance we'd never get to experience sharing a meal with her, the future of our family was so unknown, yet here we are!  14 months and 14 trips to Gainesville later...eating together as one little happy family!  There may be a lot of bumps along the way, life may be super crazy, but we are blessed beyond belief.

 

Height:  31 inches

Weight:  21 pound 4 ounces

Eyes:   Brownish-green

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

Clothes:  Starting to be too be to tall for 12 month pants.

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

Food:  Still loving her mommy milk! She also likes noodles, turkey (most meat really), gnocchi, watermelon, 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.)  Also loves books.

 

 

 

 

 

 

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!

All About Makenna: 11 Month Update

It is amazing how quickly this first year is flying by.  I just can't believe that Makenna is already 11 months old.  In a way our time in the NICU and the difficult months she spent on oxygen at home seem so long ago, almost like it never happened at all.  However, at the same time it seems like just a few weeks ago I was holding my tiny little baby in my arms.  So crazy.

Her 10th month has been jammed packed with all kinds of new and exciting things.  Our sweet little girl never ceases to amaze us.  Everyday she is learning and doing new things, meeting milestones, and making us smile.



 This month has been huge for her in terms of communication and social skills.  She is babbling a lot more and really enjoys playing with new sounds.  Her speech therapist said she has a surprising number of sounds in her vocabulary and she is impressed with her ability to communicate her needs and desires without crying (she never cries unless she is in pain).  Instead she communicates with us through gestures.  This month she learned to point at what she wants and now she points at everything constantly.  She also learned how to wave high and bye by moving her little fingers up and down.  Adorable!  She can sign "more" when she feels like it, claps when she is excited, and she will nod/shake her head yes and no.  She also reaches out when she wants to be picked up and will push your hand away if she doesn't like what you are doing to her (giving her medicine, measuring her head, etc).  Makenna is also very playful!  She loves playing "peek-a-boo" and "where's makenna" and initiates both games herself.  For 'where's Makenna' she will grab our hand and use it to cover her eyes and when we say "where's Makenna" she will pull our hand off of her face and smile.  Another way she interacts with us is by imitating sounds and noises we make.  If we smack our lips, blow raspberries, click our tongue or say certain sounds, she will too.  This month she also learned how to share.  Now if we ask for something she will usually give it to us and she will also hand us things without us asking too,

Her fine motor skills are absolutely incredible too.  She will not only pick up small pieces of food, but also strings, crumbs, and even pieces of loose hair.  She loves pincer grasping for everything she sees.  She also continues to enjoy playing with toys.  She likes to pull on the strings of her tug box, shake her maracas, bang toys together, and hug/kiss her baby doll.  When playing she also knows exactly which toy she wants and will dig through her toy box or point to what she wants on the shelf.  It is fun seeing her develop desires and opinions towards things.

Physically she officially found her feet this month!  It is so cute watching her finally hold onto her feet and she is even putting them in her mouth.  This skill is great for stretching muscles and preparing to move, so we are excited.  Other than that she remains about the same in terms of physical ability.  She has rolled from back to belly a few times, but in general doesn't roll.  She can sit up pretty solidly, but not well enough that I can look or walk away (she still tends to fall over and isn't able to catch herself).  She also isn't able to get herself into or out of the sitting position yet either.  At this point she is getting very frustrated with herself because she knows what she wants and her body won't let her do it.  She  definitely wants to move, but between her head being extra heavy and her fear of crossing midline, she just hasn't been able to make it happen.  Her physical therapist said that she feels she is now strong enough to do more, but she thinks her fear of falling keeps her from trying.  We work with her constantly though, so hopefully it won't be much longer until she gets enough upper body strength and confidence to do tummy time and learn to scoot.

When it comes to food, Makenna is an adventurous eater.  She is limited more by her food sensitivities (dairy, soy, and some root veggies) than pickiness.  She really isn't that picky about flavor at all, but she is moderately picky about texture (she doesn't like the texture of several fruits).  She loves spinach, quinoa, steel cut oats, turkey, beef, chicken, avocado, pumpkin, noodles, bagels, and pretty much anything we give her, if she is in the mood to eat.  She is also developing independence when it comes to eating.  She doesn't like being fed by us anymore and insists on feeding herself with her hands.  We bought a new booster seat, so now she can sit at the table with us, which we all love.  It is fun having family dinners and really nice being able to eat my food while she eats hers instead of eating in shifts!  Makenna still nurses and refuses to take bottles.  We've tried getting her to drink water and coconut water from sippy cups, but she doesn't like them much either.  She will, however, drink some from regular cups with our help.  Funny girl!

And now onto the medical stuff...
 Unfortunately her head continued to grow again after slowing down briefly last month.  Neurosurgery decided it was time for a shunt.  On Thursday 8/28 we headed back to Gainesville.  She had a sedated MRI of her chest and head on Friday and shunt surgery was scheduled for 8:15am.  At 8am, moments before it was set to begin, they decided to put the surgery on hold and have pediatric surgery, cardiology, and radiology examine her MRI for another possible cause of the hydrocephalus.  Ultimately they decided to go ahead with the surgery and it was rescheduled for 1:30pm.  That meant that poor Makenna couldn't eat or drink from 1:30am to after surgery at 3:30pm!  It also meant that we were stuck in pre-surgical holding for 6 hour.  My mom, Rex, and I spent the 6 hours taking turns reading, holding, and walking her around.  Makenna had fun smiling and waving to everyone else who was waiting for their surgeries.  We were told by several that she brightened their days.  At 1:30 they took her back for surgery.  She has a neurosurgeon do the brain part of her shunt and her buddy Dr. Kays laparoscopically did the abdomen part.  It was a fairly fast procedure and they said it went well.  After surgery I was able to hold and nurse her immediately, which was great because she was crying for me and seemed to be in a little pain.  She didn't want anyone else to hold her, so I held her for hours while she slept.  By 8:30pm her pain seemed minimal.  She had pain medicine before falling asleep for the night at 8:30pm and didn't have anymore throughout the night.  The next morning she woke up, completely alert, and was ready to sit up and play as if she didn't just have brain surgery the day before.  Amazing!  She was able to leave the hospital at 10:30am, just 17 hours after surgery.  Her resilience and strength is amazing.  Makenna has always been "the happiest baby ever" (ask anyone), but since the surgery she is even happier.  She laughs a lot more and just seems to feel better.

 

Height:  29 inches

Weight:  19lbs  10oz

Eyes:   Still grey, sometimes they look brown and sometimes green.

Hair:  Brown and still getting longer

Clothes:  She is wearing mostly 12 month clothes, some 6-9 and 9-12.

Diapers:  Cloth full-time (minus vacations, size 3)

Food:  Listed above

Sleep:  Waking up more times than I can count a night....still
Teeth:  2 bottom teeth

 Favorites:   Makenna really loves putting small balls on her giraffe slide, playing with her tool box, eating food at the table with us, and meeting new people!

Our CDH Awareness Day - 1 yr later

One year ago today we found out about Makenna's CDH.  I can still hear the doctors voice when he said "I do see a problem with your baby."  I remember after he spoke those words, he paused for what was probably only a couple of seconds, put his hand over his mouth, and took a deep breath.  I remember it vividly.  Like it was yesterday.  I could tell in that moment he was about to say something bad.  Really, really bad.  And in that incredibly short pause, I remember thinking a million different thoughts all at once.  I remember thinking "Problem!? What problem!?  Is she going to die? Will she look different?  Is it a genetic disorder?  Why wasn't this 'problem' found on the other 20+ ultrasounds.  Talk to me! Why aren't you telling me the problem?!"  And then he it happened.  The silence was shattered and seemingly so was our world.  It was at that moment on August 13th 2013 we learned how three little letters (CDH) can
change your entire life in an instant.

As we left the hospital that day I remember thinking "What did we do to deserve this!?"  I don't smoke or drink, ever, I ate all the right food, took my prenatal vitamins everyday (even before I was pregnant), and didn't take any medicine (not even tylonol) while I was pregnant.  I even spent 14 weeks in bed to save her life during the bleed and prayed for her safety every night.  It didn't seem fair that people who know they are pregnant and decide to smoke and drink, have perfectly healthy babies, but we would not.  I remember thinking "why are we so unlucky??"  Why us?

A year later I now realize that special kids are given to special parents.  We proved early on with the bleed that we will always do what is best for her and are willing to do whatever it takes to keep her safe.  We proved our strength, love, and devotion to her.  We didn't get stuck with a child with special needs.  We earned her and she is a blessing.  We didn't get her because of something we did wrong.  We got her because of everything we did RIGHT.  God knew that of all the people in the world, we are the perfect parents for her and she is the perfect daughter for us.

Our sweet little girl is everything we ever could have hoped for and so much more.  She makes everything worth it, but don't get me wrong.  That doesn't make everything easy.  Lets' be honest, life after severe CDH is hard and recovery is long, especially when it is further complicated by the need for brain surgery and hydrocephalus.  In the year since we found out about CDH everything has changed dramatically.  I know longer teach first grade, I now spend my days obsessing over her head circumference, keeping up with her extensive schedule of therapies and appointments, and I obviously worry non-stop about my precious babies health and development.  It's scary seeing her fall farther and farther behind other babies her age.  I want her to play with my friends kids and learn from them, but we are forced to limit those interactions because of germs.  It is more safe to stay home, alone, hiding out.  Many of the friends I had prior to CDH have given up on us and others have kids or teach kids and that makes visiting tricky.  So yes, that is the ugly side of CDH.  The ugly side of our reality the last year.  However, this is our reality because Makenna is a CDH suvivor.  The word 'survivor' makes every delay, every missed play date, every doctors appointment, surgery, and all the stress we have felt this year totally worth it.  She survived something that only 50% of babies survive and not only did she survive, but to quote her doctor "she is a wonderfully precocious little doll."   She makes it easy to stay positive.  Every time she reaches out for me and every time I hear her say "mom mom" I am reminded why I love my new life.  It might be a crazy life, but it is our life, and we wouldn't change it for anything in the world.  Changing our situation takes away the Makenna we love.  We don't want to change her.  We love her exactly how she is and exactly how God made her.  God doesn't make mistakes.  Her CDH isn't a mistake. She was put in this Earth and survived so that she can do great things.  I said this before she was born, but now that she is here, I know it is true.  She is already loved, followed, and prayed for by literally several thousand people all over the world, many of which we have never and will never meet.  Her story has already reached thousands, inspired many, and has taught a huge number of people not only what CDH is, but that yes, your baby can survive CDH and no, you don't need to abort.  Makenna at 10 months old has already saved lives and given hope to other families.  With out even realizing it, she is already doing great things and making a difference.

We will never be able to thank the doctor enough for diagnosing her CDH before birth but thankfully there is NOT a problem with our baby.   She is perfection.

I can't wait to see what the future has in store for her.  But until then our sweet 10 month old has a smile that lights up not only her face, but also the faces of everyone she sees and a laugh that is contagious.  She is easygoing, strong-willed, smart, social, charming, adorable, and absolutely positively the light of my life.  We love her more than words can describe and we are so blessed to be able to call this wonderful miracle our daughter.  How did we get so lucky!?

All About Makenna: 10 Month Update

Makenna is 10 months old!  It is insane to think in just 2 months we will be celebrating her first birthday.  I really can't believe how fast this year is flying by and how big she is getting!  When Makenna came home at 6 weeks old she was a very small and fragile little baby.  Weighing 7 pounds 1 ounce (up only 7 ounces from birth) she was just barely in the 5th percentile.  She stayed small for the longest time and was in newborn clothes until almost 4 months old!  However after we got her home and her tongue tie was corrected, she took off and became a wonderful little eater!  Today my sweet girl is in the 50th percentile, weighing an amazing 19 pounds and fits 9 & 12 month clothing!  She is also getting to be so long, at about 29 inches she is nearing the 75th percentile!  Amazing!

Another amazing feat this month is that Makenna finally rolled from back to front for the first time!  She definitely hasn't mastered rolling, but I think she is getting closer.  Right now she is only willing to roll to the right side.  She doesn't lift her head enough, so her arm gets stuck underneath her
and stops her from being able to fully roll over.  It's a learning process though, she's getting there!




She has also gotten even better at sitting this month and doesn't fall backward nearly as often (we still

can't walk/look away from her though, even for a second, unless she is surrounded by pillows).  In physical therapy she is currently learning how to shift her weight and reach for items located on her left and right sides.  This skill is particularly scary for her.  She doesn't like feeling as though she isn't completely balanced, she prefers to play at midline, but when she puts her fear aside she can usually do it without falling over!  Mastering this skill will help her learn how to get into or out of the seated position on her own, which she can't do just yet.  Right now when Makenna is finished sitting she either reaches out for us to pick her up or she just falls backwards - scary!

While gross motor skills seem to have hit a little plateau this month, her fine motor skills really took off!  Every two months or so her pediatrician has us fill out a survey on her development.  On her 7 month survey her fine motor skills showed a cause for concern, but this month she had a perfect score!  She can pick up small puffs, feed herself, and even pass them from hand to hand.  She loves really playing with toys now and no longer immediately put everything in her mouth.  She will play by shaking, hitting, and pushing toys, which is so fun to watch.  She has learned how to turn pages of books and loves to take toys out of baskets (still won't put them back in though).


Socially Makenna continues to blossom.  She is incredibly well-behaved in public and never cries or fusses.  We get comments every where we go about how alert, engaged, and happy she is.  She loves people-watching and enjoys taking in all the new sights and sounds.  What surprises me most is that even with as sheltered as she has been, crowded and loud places don't phase her a bit.  This month her sense of humor really started to develop.  She now finds goofy dances and weird noises particularly funny.  She also has started to enjoy playing typical baby games such as "so big" "where's Makenna" "peek-a-boo" and "patticake." She started saying  "mama" last month, but this month she started using it in reference to me.  She will call for "mom mom" when I am out of sight or if she wants something.  She has also started using a little sign language this month and knows how to sign "more" she won't do it every time, but it is so adorable when she does. 

Food wise Makenna has decided she doesn't like purées anymore.  We have been doing baby led weaning with her, which is going pretty well; however, there are so many foods she can't have that we never really no what to feed her.  Still, gone are the days of ever having food to myself!  She now loves eating little pieces of whatever we eat, especially turkey, avocado, watermelon, corn, and whole-wheat pasta.  Yesterday I gave her puffs and I was dipping pita chips in guacamole.  She refused to eat her puffs until I dipped each one into the guac for her.  It is so cute that she already wants to be like me.  This month she also learned how to drink from cups while I hold them and has begun mastering the art of drinking water without choking! 



Another exciting thing this month is that Makenna got her bottom two front teeth.  So far she has been the easiest teether ever.  No fussing, drooling, chewing, or anything out of the norm!  In fact both teeth broke through (about 2 weeks apart) and we didn't notice either one until they were already completely cut.  Everyone said I would be the first person to notice her teeth because she would bite me while nursing, but oddly enough, Rex actually noticed the first tooth.  So far teeth have been a non-issue for nursing, what a relief!

Last toothless grin picture!

Sleep this month continues to be rough, but In general it usually doesn't bother me too much.  When
she is awake during the night she is always happy and just wants to nurse and snuggle with me.  I know the desire to cuddle won't last forever and that makes me sad.  In the meantime I'll take all the cuddles she will give!  This month she also started to cut out her third nap most days and sleep a little bit longer during her second nap instead, which has been wonderful.  I am actually able to get some work done while she sleeps now!

My mom and my sister are both teachers, so overall the best thing about this month was having them come visit us several days a week over the summer!  Makenna really enjoys seeing and interacting with them, I'm sure she will miss seeing them so much, but they will still come visit after school some days and on the weekends!







Health update:  Up until her brain surgery on June 2nd, Makenna's head was growing about 1cm a month (instead of .5) due to the hydrocephalus.  After the surgery we continued to measure it and in just over a month it had grown 2 full centimeters.  Not good.  We called neurosurgery and they wanted to see us immediately, so on the 14th my mom and I went down there, expecting she would need shunt surgery.  They said if she didn't have CDH they would do shunt surgery the next day; however, her CDH makes getting a shunt less than ideal.  Makenna's organs aren't in the same location as everyone else's and she has a lot of scar tissue from surgery, together these things would cause a shunt to malfunction, and that is not good at all.  So they decided to hold off a month and continue to measure her head, in hopes that the fluid just needs a little time following surgery to stabilize.  Well in the month following our visit to Shands, her head grew a perfect 0.5cm!!  Unfortunately, that doesn't mean she is in the clear.  We will be measuring her head again this month (and for many months/years) hoping for the same amazing result.  She also had a two
hour eye exam to be sure that the excess fluid from hydrocephalus wasn't putting strain on the muscles and nerves in her eyes and she was seen by an audiologist to make sure ECMO didn't effect her hearing.  Thankfully right now they said her eyes and ears appear to be great!

All in all Makenna remains the wonderfully sweet, smart, and social little girl she's always been.  She loves people, almost never cries, and  really just enjoys being with Rex and I.  We couldn't have asked for an easier, more perfect little miracle!

Height:  28.5 inches

Weight:  19lbs 

Eyes:   Still grey, sometimes they look brown and sometimes green.

Hair:  Brown and getting longer

Clothes:  She is wearing mostly 9-12 month clothes.

Diapers:  Cloth full-time (minus vacations, size 3)

Food:  Listed above

Sleep:  Waking up more times than I can count a night....

Favorites:   Makenna really loves small balls, her egg shaker, books, her banana tooth brush, and eating puffs!

All About Makenna: 9 Month Update

Wow.  9 months old.  How is that even possible!?  She is getting so big and truly amazes us with her strength, resilience, and determination.  Everyday she does and says new things that are just so exciting and rewarding.  She loves "talking" and babbles constantly.  She definitely understands how to have back and forth conversations.  She will talk and then stop and look to us so that we can chime in, then she will begin again.  Another cute social thing she learned to do this month is wave!  She loves to wave hi and bye to people by moving her whole arm up and down.  She also loves to give high fives and will gesture to be picked up as well.  She is currently working on learning to clap (pretty much has it) and wave by just moving her fingers (sometimes she will copy us).  She's so smart and adorable!





Physically she is getting much stronger.  She is able to sit up on her own and can usually catch herself if she starts to fall over.  Although because she hates tummy time so much, she still isn't able to push up on her hands during tummy time, which means her arms aren't strong enough to help her get into and out of the sitting position.  It also means she still can't roll over.  We are working on it everyday and she still has physical therapy, so hopefully her arms will get stronger soon.  I feel bad that she still isn't able to move around and explore her environment on her own.

Makenna spends a lot of time sitting on her mat and laying on her back.  I know she would enjoy being able to wander around, but fortunately and unfortunately she is content sitting still because she doesn't know what she's missing.  She will see a toy out of reach and reach for it, but if she can't get it she just gives up and plays with something she can reach.   She's really easy going, if can't reach anything she just plays with her hand or sucks on her thumb (which is also something new she has been doing this month- she doesn't do it for comfort though, just out of boredom.).





This month she started to develop some fine motor skills.  She learned how to hold small toys, such as blocks, in one hand and began exploring other ways to play besides just putting things in her mouth.  She can pass the toy from hand to hand or hold a small toy in each hand and bang them together or on the floor.  She is beginning to understand cause and effect toys as well.  She will shake them or push buttons to achieve the result.  Another big accomplishment this month has been mastering how to picking up small pieces of food by raking her hand over them and she has started to begin occasionally using the pincher grasp as well.

 

 

This new skill opened up a whole new way to enjoy food and allowed her to begin feeding herself puffs and small pieces of soft food. She loves chewing and has started to prefer soft solid things over purées.  She doesn't really like being fed from a spoon anymore, in fact she will usually push our hand away when we try to spoon feed her.  As a result we have started using baby led weaning with her and she has been doing really great with it.  It is so cute to see her little mouth chewing food and she is pretty adventurous about trying new things.  She's a little funny about some textures and smells, but in general does well.  I keep a list of everything she tries and her reaction to it (and it's reaction to her!)  So far she has already tried over 50 different fruits, veggies, and grains!  Her favorite purée mixtures are "kale, corn and quinoa" "pumpkin banana"  and "spinach mango and pears."  Her favorite soft solid is still watermelon, but she loves puffs and avocado too.  She dislikes absolutely anything with apples.  This month I also decided to trial dairy and soy again to see of she would react.  I gave her 20cc of milk I pumped while she was in the NICU and she broke out in a full rash and her congestion came back.  Dairy and soy are definitely still a no go!

As far as her eating schedule, she still nurses on demand and I offer small amounts of food to her two or three times a day.  Some days she is interested in eating food and will eat something during every meal, while other days she wants nothing to do with it at all.  She is gaining wait fine though, so I just let her be the boss of if, when, and how much she wants to eat.

This month she also continued to get out a little bit more.  She attended lap sit story time at the library with a little friend, visited her new friend, Benjamin, a few times, and had the opportunity to go on a few little shopping and dining outings.  Normally when we go out I wear her in the front carrier, but this month she got to experience sitting a shopping cart and a restaurant highchair for the first times...further proof that our little girl is growing up.  Another positive about this month is that she has started to respond a little bit better to the car.  Previously she would scream every time we put her in her seat, but recently the screams have somewhat subsided into annoyed moans (at least when I sit back there with her), which has been wonderful.  Now literally the only time she ever cries is during tummy time or if she is in pain.  Other than that, thanks to attachment parenting, she is able to communicate her needs and attitudes towards things to me without crying.  She is such a smart, happy, and content little baby.

 Now that all the fun stuff has been discussed, this month we also had a big medical scare.  On Father's Day I was awakened at 3am to a single gasp.  I shot up and grabbed Makenna.  By the time I got to her, she was limp and unresponsive.  Rex and I agitated her by blowing in her face, undressing her, hitting her back, etc. and finally after a little bit she slowly came around.  I can honestly say, despite everything we've been through, that was the single scariest moment in my life.  For a few moments I really didn't know if she was going to wake up.   Thankfully once we were able to get her back she was 100% normal, smiling and playing.  We didn't go to the hospital because I assumed she just choked, but I didn't let her go to back to sleep right away either.  I called my parents and they came over at 4am to help me watch her like a hawk.  On Monday we took her to our pediatrician.  She talked to neurosurgery at Shands and they said they wanted to admit her for observation overnight, so we took her to the hospital ER to wait for an ambulance.  16 hours later (yes, 16.) one finally showed up.   They put us on the stretcher and said I had to hold her the whole time.  I asked why they didn't have a car seat and was told more than once that this is "just how it is done."  I kept commenting on how unsafe it felt and that I couldn't believe this is standard.  Once we got to Shands we learned that it definitely wasn't protocol, which was really infuriating.  Thankfully we both made it safe and sound.

We spent about 8 more hours in Shands Emergency department recounting the events to everyone that asked (roughly 30 different sets of people).  She was evaluated by doctors, nurses, residents, surgeons, and all types of people from neurosurgery and neurology.  She had an MRI and then Dr. Kays showed up on his day off to see us.  He said she looked great, but he wanted to admit her for the night.  It was like being back in the NICU.  When Dr. Kays is around, things happen.  Shortly after he left we were finally moved to a hospital room.  While we hung out in the hospital room pediatric surgery, neurology, and neurosurgery spent time observing her and reviewing her MRI.  Thankfully in the end they ruled out a seizure, apnea, and respiratory issues (all very possible given her hydrocephalus and CDH).  They decided to rule it an "apparent life threatening event" which is kind of like SIDS, except she survived.  Needless to say I have had many sleepless nights since.  I just can't help but sit and stare at her little chest as it moves up and down for hours.  I am so thankful that I heard her little gasp that night.  I don't even want to imagine the outcome if I hadn't.

 Anyway, breathing scare aside, this has been a wonderful month with so many incredible "highs."  It is so exciting to watch her inch a little closer to being a toddler everyday.  She is getting so big and playful.  She is beginning to see the humor in funny situations (like her dad's goofy dancing or her Auntie Julia's general silliness) and she remains the happiest, sweetest, most social little baby I know.

I love her hair!

Height:  27 inches

Weight:  17lbs 5oz 

Eyes:   Still grey, sometimes they look brown and sometimes green.

Hair:  Brown and getting longer

Clothes:  She is wearing mostly 6-9 month clothes.

Diapers:  Finally in cloth full-time (minus vacations)

Food:  Listed above

Sleep:  Waking up more times than I can count a night....

Favorites:   Makenna really loves small balls, her egg shaker, books, her banana tooth brush, and eating puffs!