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!