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!

All About Makenna: 8 Month Update

 

Typically in these updates I like to focus primarily on Makenna; her milestones, likes, dislikes, and who she is beyond CDH.  However CDH isn't something you take care of at birth and then move past.  It is something she will likely have to deal with off and on for the rest of her life.

This was made clear at the hospital before we brought her home.  At that time we were told that Makenna had an abnormal brain MRI from ECMO and could have significant delays or never reach her milestones.  They couldn't tell us with any level of certainty if she would ever learn to roll, sit, crawl, walk, talk, or read.  We were told we just had to wait and see.  The wait has been difficult, especially when 4 months came and went and she still couldn't roll over.  

We kept waiting and eventually 5 months came and went... then 6 months and 7 months as well.  Even now at 8 months she still hasn't rolled.   Not once.  We knew this was from her discomfort with tummy time and the fact her head is bigger and heavier than it should be from hydrocephalus, but developmentally everything pretty much seems to henge on being able to push up on her hands and roll over..and she still can't do either.  Needless to say were thankful when surgery was scheduled for May 21st, we knew that stabilizing the hydrocephalus would help.  Although as the days drew closer to surgery we received what felt like the worst news ever - it needed to be rescheduled...again... and for a month away!  This was devastating news because we thought it would mean another month of watching her gross motor skills plateau and her development to become more delayed.

However -- on May 15th our sweet miracle, heavy head and all, began sitting up unassisted!  Sure she is  wobbly and needs us to be on guard at all times to catch her when she falls, but my strong girl is figuring it out and is so close to mastering her first real milestone!  It might sound silly, but seeing her adorable little body sitting there on her own gives us so much hope.  I seriously can't stop staring at her in awe of how strong and determined she is.  She never lets anything keep her down!

Before Surgery: 

On May 24th they called to tell us that her surgery was moved up to June 2nd, but we needed to be in Gainesville on May 27th for pre-op and CT scans.  So just like we did 8 months earlier, we packed up and headed to Gainesville (thankfully only for 10 days this time!). We began our trip by meeting with Dr. Pincus.  I was immediately impressed by him and he was so sweet with Makenna.  He called her a 'wonderfully precocious little doll,' which I think sums her up quite well.  He also kept saying she was 'absolutely fabulous' over and over again, he couldn't get over how social, alert, and sweet she is.  He went over the procedure with us and Rex and I both left feeling very confident in his abilities to help Makenna.

 

He explained that the surgeries she  will receive are called an "endoscopic third ventriculostomy" and an "arachnoid cyst fenestration."  The ETV  involves going into her brain and creating openings in her ventricles so that the fluid can flow.  Then they poke holes in her cyst (which they described as "quite large") in order to get rid of the obstruction.  He explained that he felt this had an 80% chance of working and if it didn't she would need to come back in 6 weeks for a shunt.

After the visit we began the 'vacation' part of our trip while we waited for surgery on June 2nd.  We had a lovely time visiting her great grandparents and our wonderful friends from the NICU! She also got to go swimming for the first time and absolutely loved it!   She is definitely a little fish and took to the pool immediately, even though it was a bit cold!  This month she has started blowing raspberries a lot.   She is also getting much stronger and more determined to get what she wants.  She can stand up if we hold her hands, will roll onto her side to play with toys, and if she sees something she wants while in our lap, she will shift her weight to roll over in hopes of reaching it.  Another fun thing she has started doing this month is reaching out for me when she wants me to hold her (which is all the time) and raising up her arms to make it easier to pick her up.  Little things like this are a definite reminder that she isn't going to stay little forever.  I feel as though CDH robbed us of Makenna's newborn stage, so I have definitely been making sure to treasure as many fun moments with 7+ month old as possible!   :)

 

On June 1st we celebrated my birthday and Makenna said "mama" for the first time!  I know she wasn't really referring to me, but she had been so quiet in the last several weeks that hearing her 'talk' was a welcome sound the day before her big surgery!

Surgery:
On June 2nd I woke up at 3:30am to feed her for the last time
before surgery and then headed to the hospital at 5:30 (we were all
too nervous to go back to sleep!).  When we got there we changed her into her gown and waited in the pre-op room for an hour.  At 8am it was time for surgery.  It was the scariest and saddest feeling ever to hand her over to them, knowing her little life was completely in their hands.  This definitely wasn't her first surgery (it was her 6th), but it was the first time we had to drive her to the hospital and hand her over---every other time she was already there...for some reason this just felt so much worse.  It was made even worse when she started crying as soon as I handed her off to anesthesia.  She is always with me so I know she must have been
very confused and scared.  We went down stairs to begin the long wait, it was only two hours, but they seemed to drag on and on.  Thankfully Joy came to visit for a few minutes, which helped to briefly calm my nerves.  Once we got the call that her surgery was finished, we went straight up to the 10th floor to see her.  I saw her lying there and wanted to immediately scoop her up, but I had to wait until she was more alert.  After about an hour I finally got to pick her up.  Unfortunately she became sick from the anesthesia and started throwing up.  After two hours of letting her rest and some zofram it was finally time to pick her up.  Once I picked her up she wouldn't let me put her down!  We snuggled and nursed in the pediatric ICU (so they could monitor her o2) and her amazing nurse even had them replace her crib with an adult bed so I could snuggle her all night!  Much to our surprise, the next day they said she was doing great and instead of going to the regular pediatric floor, we got to go hom!  At that time she was clingy towards me; however, thankfully she wasn't in too much pain.  We had planned to stay in Gainesville for one extra night, although she was looking so puny we decided to stay for 2.  By 48 hours post surgery she was already showing signs that she felt better and that the surgery might have worked.  She was letting other people hold her and the tongue protrusion she's had for a few months was almost completely gone.  Best of all she began "talking" non-stop again like she used too!  I hadn't noticed how much less she talked until I started hearing her sweet voice again.  We left Gainesville with hope that when we return in a few weeks they will say it was a success!  Just 4 days after surgery was feeling better and (more or less) back to her old self! 

 

Height:  26.5 inches



Weight:  16lbs 1oz 

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:  She is still a huge fan of nursing, but her favorite solid food is watermelon!

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

Favorites:   Makenna really loves her boon bath toys, her green flower, and interacting with people!

All About Makenna: 7 Month Update

 Makenna Claire is 7 months old!

 

 

One exciting thing about this month has been watching Makenna try solid food for the first time.  We have been giving her a new type of food every four to five days because she is prone to reactions.  In general we believe that food before one is just for fun, so we are more focused on the experience of eating, than the actual act of ingesting the food.  Until one she will continue to get all of her nutrients from milk, but we want her to be exposed to as many healthy foods as possible early on.  With most foods (as appropriate), I let her explore the food in its original form; however, she isn't ready for full baby-led weaning because she still can't sit up.  It is fun watching her see, feel, smell, and taste all of the new foods, flavors, and textures.  She usually loves getting hands-on and isn't afraid of getting a little messy!  Since she doesn't eat too much during her exploration time, after she has played with the actual food, I give it to her in a purée form from a spoon as well.  This month she has tried sweet potato, peas, avocados, green beans, carrots, bananas, and peaches.  She absolutely loves everything except green beans and bananas (we'll keep trying), and unfortunately she has developed rashes from sweet potato (her favorite) and avocado (hopefully she will grow out of that allergy quickly!). 

 

This month flu and RSV seasons are (more or less) wrapping up and her immune system is a little stronger, so she has been getting to go out a little bit more.  We are still being extra cautious though by only going out during "down times" and making sure trips are kept short.  I also usually put her in a front carrier so that other people won't be as tempted to touch her.  It has been fun experiencing (kind of) "normal" life with a baby and she loves socializing and seeing the sights!  As of now she has been to Publix, Wal-mart, Lowes, Outback, Applebees, Chuys Mexican, and the park!
This month she also got to visit her great grandparents for a couple of days, interact with a special friend from the NICU (who was also on ECMO), and participate in the CDH awareness walk at Shands with several other CDH families we have come to know and love over the last few months!  After so much time avoiding people, it is fun to see my little social butterfly smiling and enjoying the company of others.  She (fortunately and unfortunately) draws a crowd wherever she goes.  People can't help but notice her enthusiastic open-mouth smiles and her ability to say "hi" so young.  Everyone who meets her says she is the most social baby they've ever met.


Medical update:  Makenna's MRI at the hospital showed enlarge ventricles so we have been monitoring her for hydrocephalus.  Since coming home her head circumference kept creeping up percentile ranks each week. When she got to the 75th percentile we decided to contact Dr. Kays.  They weren't too concerned, but wanted us to meet with the neurosurgeons at Shands to be sure.  By the time we got to her appointment a month later, her head was in the 95th percentile.  I suspected they would say she did have hydrocephalus; however, the difference between the 50th and 95th percentile is only 1.5 centimeters so it doesn't take much to go up in ranks!  Much to my surprise, at the appointment they felt she just had a big "CDH head" (apparently most CDH babies have big heads!), but they decided to go ahead and do another MRI to be sure.  As I suspected the MRI showed an area of concern.  They discovered that she has a cyst in her brain, about the size of a ping pong ball, that is obstructing her ventricles and causing a build up of fluid, aka hydrocephalus.  I never would have guessed she had a cyst, but I am thankful that I followed my intuition and contacted them when I did.  In two weeks we are going to go back to Gainesville for a surgery called "endoscopic third ventriculostomy."  They will go into her brain and poke holes on the cyst.  This will allow it to drain and hopefully help the fluid to being flowing without needing a shunt.  We will continue to monitor her head circumference over the next 6 weeks.  If it continues to go up, she will need to go back to Shands for another surgery to implant a shunt.  I really hope and pray that the third ventriculostomy works and no shunt is needed.  As scary as brain surgery is, after 6 months of obsessively measuring her head, I am glad to finally have clarity as to what is wrong and be able to start working towards making her better!



Physically this month has been similar to last month.  She continues to despise tummy time and still hasn't learned to roll over or sit up yet (due to delays from being so immobile in the NICU, as well as from the hydrocephalus).  Despite the challenges she looks wonderful when she is on her tummy though.  She is able to hold up her head and support herself with her elbows.  She has also started being willing to play on her side more and will roll to her side to play with toys, so that is a great start.  Makenna can sit well with very little support and will even play in the seated position, but her physical therapist believes all the extra fluid in her head is making it difficult for her to sit on her own.  We are hopeful that after her surgery this month she will be able to finally begin siting and rolling soon.  You can tell she wants to move and gets frustrated when she physically can't get places on her own. 


Even with the not so fun aspects of this month, we are enjoying life with our wonderful little girl. She is so funny, smart, and amazing that it is impossible to look at her and not smile.  She has a way of lighting up the room and putting things into perspective.  I look at her and all our day to day worries and stresses seem so insignificant.  She has been through more than most adults will in a lifetime and yet she is still happy.  She is so inspirational and so many people have and will continue to learn a lot from her.  I admit, sometimes I catch myself thinking "Why us?"  Or "It's not fair!"  But then I look at her and I am reminded that if we didn't have these struggles, we wouldn't have the Makenna we know and love.  Just one of her amazing smiles makes it all totally worth it...and we get hundreds of smiles a day.  


Height:  26 inches



Weight:  15lbs 2oz 

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

Hair:  Dark brown and getting longer.  We have been having fun with pigtails and ponytails this month!

Clothes:  Some 3-6 month clothes fit, but she is wearing mostly 6-9 month clothes due to length.

Diapers:  Size 3 honest company diapers and one-size cloth

Food:  She is still a huge fan of nursing, but her favorite solid foods are sweet potato and pears.

Sleep:  Still waking up 5-8 times a night.

Favorites:   Makenna really loves her bunny lovey, her activity jumper, napping in our bed, and taggies.

Every time Auntie visits, Makenna gets a big bow and a tutu!

All About Makenna: 6 Month Update

 

Today is a reminder of how far we've come.  6 months ago we didn't know what the future would hold.  All we knew was that after 9 long months of a very difficult pregnancy, it was time to have our baby.  Typically on delivery day women are just ready to get the baby out, but for me it was different.  I wanted her to stay in.  She was safe in me where I could breathe and eat for her.  I knew as soon as she entered the world there would be an endless number of things I couldn't do for her and her precious life at that point would be out of my hands and my control.  I didn't know if she would be in the 50% that made it or the 50% that didn't.  All I knew was that hours after her birth Dr. Kays said she was much, much worse than they anticipated.  Dr. Kays doesn't loose CDH babies very often, but you could see in everyone's eyes and demeanors that this time they really weren't so
sure.

We were told by several that she was the sickest baby in the NICU and that was scary since she was 1 of 6 CDH babies in the NICU at the time.  We began living hour by hour, sometimes minute by minute, never knowing when or if our world would come crashing down.  We never gave up hope though.  We believed she had the strength and determination to survive.  We also knew that God and Dr. Kays were the ultimate power-duo, so between them and our love for her, anything would be possible. We devoted all of our time to our baby girl.  I never wanted her to wake up alone, so combined we sat with her for at least 18 hours a day, praying, talking, singing, reading, laughing, looking, touching, holding, and waiting everyday for 42 days.  The NICU became our second home, the nurses and other parents became our friends, and our entire world suddenly centered around our perfect little miracle in the making.  It is for these reasons and 1 million others that her half month birthday is such a huge deal.  She beat the odds.  She's a survivor.  She is a warrior, a miracle, and an all around incredible little girl.


The most notable thing about this month is how happy my sweet girl has become.  Now that the dairy, soy, and nuts are completely out of her system and we have discontinued the iron drops that hurt her insides, she is finally not in pain and is so delightful.  She is all for letting other people hold her and I am able to place her down on a play mat or in a bouncer long enough to get a few short tasks accomplished.  She still has anxiety about not seeing me though.  She gets scared and will cry if I leave her "alone" with anyone else while I shower or do laundry.  The tears are immediately replaced with a huge gummy smile as soon as she sees me appear though.  It warms my heart that she is so bonded with me and loves me so much.

Speaking of love, this month she learned to give hugs and kisses.  She will grab me by the hair and Rex by the face and pull us in for huge open mouth kisses.  <3  She also always reaches out to grab our faces, when she does you can literally see love and admiration in her eyes.  She is such a wonderful little love bug!  She has also really become great at communicating her needs without crying.  When she wants to nurse she will stick her tongue out, when her diaper needs changing she wrinkles her nose, and when she is ready for sleep she will rub her eyes. 







At the beginning of this month Makenna's physical development seemed to hit a plateau.  She continued to exhibit her wonderful skills from the previous months, but didn't seem to be learning anything new.  Then suddenly about 2 weeks ago she woke up one morning literally feeling bigger and stronger.

She has great head control and the tightness in her neck has mostly resolved.  She really enjoys prop sitting and looking around, so she has been practicing this skill a lot.  When she is sitting in our lap she no longer wants to lean back against us for support and has begun reaching and grabbing for things a lot while in the seated position, which is really fun.  I think she will get the hang of sitting unsupported before much longer, maybe even before the next update!

Tummy time continues to be a struggle.  She screams in apparent pain almost instantly.  Even though she isn't comfortable in this position we continue to practice for 2-5 minutes at a time throughout the day and she is getting much stronger.   She is learning how to bare weight on her forearms and hold her head up simultaneously.  Occasionally we can get her calm enough and she will reach for toys or books during tummy time, but typically it remains a struggle.  Unfortunately because she dislikes her stomach so much, she sees absolutely no reason to roll over onto it.  We are still waiting on the day she learns to roll.  However, I know she is capable of rolling if she wanted to because when we lay in bed she knows how to reach for me and rotate her leg into a side-lying position in order to cuddle or nurse.  I think if she saw a toy she really wanted she would roll for it with the same determination she shows when she wants me to feed her, but she is perfectly content on her back playing with her hands and sees no reason to put herself in an uncomfortable situation by rolling.

This month she has continued to "talk" a good bit and has started to repeat sounds and words we say as well.  This new skill definitely takes everyone by surprised since she is only 5 months old.  She completely stunned her Auntie Julia with it the other day.  Julia was saying "a poof, a poof, a poof" to her and Makenna looked right at her and with the same inflection repeated "a poof!"  She also has a dog that says "hug me" and once she repeated "hug me" after the dog.  Sometimes she even says words on her own without prompting.  She probably doesn't intentionally say words, but it is fun hearing her put sounds together and practice imitating the English language.  She shocked Rex and I one morning when we were all laying in bed.  Makenna had her back to him and was playing with me.  She heard him say something, turned around, and said "dad!" (not dada) clear as day with no prompting.  Although she hasn't said it again since, so I would say "hi" remains the only word that she consistently says in the proper context many times a day.  I started also exposing her to baby sign language this month.  She is obviously too young to get it now, but I hope it will start making sense for her in the next couple of months.

With as wonderful as days have become, that is how rough the nights remain.  She still will only
sleep if we hold her upright.  If I put her down she is literally up every 30 minutes for the entire night.  We have decided it must be as a result of her "silent reflux."  I'm hoping to get the dosing changed on her medicine soon to see if maybe she is waking so often out of discomfort of laying on her back.  We have a wedge in her bed, but it doesn't seem to help at all.  I can't wait for her to learn how to roll and move so that she can put herself in more comfortable positions at night.

As for food, I'm happy to announce we made it to 6 months of breastfeeding!  This is a huge accomplishment for us.  In the beginning I had to exclusively pump every two hours around the clock for 5 weeks (that's 140 hours hooked to the pump and roughly 9 gallons of milk in the freezer).  Once she could nurse we discovered she had a tongue and lip tie that made it difficult for her, both of which were released at 3 months old.  Next we learned she was intolerant to dairy, soy, and nuts so in order to keep exclusively nursing her I had to eliminate it completely from my diet, which also meant I couldn't use any of the milk that remained from the NICU.  It has been quite the journey, but despite the challenges we made it to six months!  I feel so proud that she and I were able to make it happen.  I love the special bonding time with her and plan to continue for as long as possible.  I know my milk is the best thing for her, especially given her compromised immune system, so even though we will now begin introducing food, my milk will still remain her primary source of nutrition for quite some time.

 
All in all she is a delightful baby with an over the top personality.  Even at 6 months old she keeps us smiling and laughing all the time.  It is easy to forget that I only get 2-3 hours of sleep a night because she is such a wonderful little girl and brings so much joy to my life.  She has changed our entire world and even 6 months later I just look at her in awe of her strength and determination.  We have been through so much as a family and it has been so rewarding to watch her beat the odds.







I'll never forget the fear I had during the pregnancy, the 6 weeks we spent in the NICU, the feeling of being awakened at 4am saying she was crashing and needed to go ECMO immediately, the sadness of watching her detox from her meds, the fear of the unknown, or the pain of seeing my sweet little baby hooked up to all of the machines, but I am thankful for the opportunity to make wonderful memories with her outside of the NICU.  The wonderful moments we've shared over the last few months are making the NICU seem so long ago.  I am also thankful that Makenna will not remember her time in the NICU.  We will share her story with her, but it will be just that.  A story.  She won't remember the fear, pain, and uncertainty we remember.  She will always know the NICU stay has a happy ending, whereas we did not.

She will also know how special her life is, where as most kids do not.  She is a fighter, a warrior, and a miracle, but best of all she is ours.  We are blessed beyond belief.  This journey isn't what I had planed for her, but it is ours and it not only shaped her, it shaped us too.  It changed our lives forever and brought us even closer to the things that really matter.  Faith, family, and friends.  It showed us who are our real friends are, brought old friends back into our lives, and best of all it introduced us to so many new friends... many with similar CDH experiences.  I am thankful everyday that God picked me to be Makenna's mommy.  He knew Rex and I were the right people for the job and he gave us the strength to get through this, marriage in tact and stronger than ever. 

All I can say is CDH picked the wrong princess!!

Height:  25.5 inches

The hair!!

Weight:  14lbs

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

Hair:  Dark brown and still long...she made it past the 6 month mark with it all falling out!

Clothes:  Some 3-6 month clothes fit, but she is wearing mostly 6-9 month clothes.

Diapers:  Size 2 honest company diapers or size 1/small cloth

Food:  Breast milk

Newborn, 0-3, and 3-6 clothes are all packed away!

Sleep:   Mentioned this above...but she is still waking up several times a night.

Favorites:   Makenna really loves reading, her sleep suit, a taggie giraffe, her baby bjorn bouncer, and her new teethers.

All About Makenna: 5 Month Update

 

 

Our little girl is growing up before our eyes.  I know I said this last month, but it seems as though everyday she a little bit bigger and doing something new to amaze us!  One day this month I picked her up and for the first time ever she was able to hold up her head with very minimal support!  Since then she has enjoyed being in carriers more and loves sitting up like a big girl in a bumbo type chair. She has also started being able to support her weight on her elbows during tummy time. Her movements overall just seem a lot more deliberate and she feels so much more strong and solid than before. 

 

 

Makenna is also much more aware of toys and now wants toys to entertain her all the time.  Now she consistently grabs things from our hands to explore and in true baby form immediately sticks everything in her mouth.

This month she has become even more social.  She loves to give purposeful smiles directed specifically at familiar faces and lets us know with smiles and little giggles when she finds something particularly funny.  She also loves my camera and smiles every time it is my hand, as if she knows that is what I want her to do!  It is so fun to see her enjoying her world and begin to really interact with the people she loves. 

 

 

Another fun thing aspect of her being so social has been hearing her babble.  She loves to have back and forth conversations with us and always tells lengthy stories at the dinner table.   She says lots of short vowel sounds, but has recently added the long I to her vocabulary as well.  For about a week she has been saying the word "hi."  We assumed it was always just a fluke caused by her experimenting with her sounds, but the other night we were playing and Rex walked in the room.  Makenna looked right at him, smiled, and said "hi" loud and clear.  She also said it to my mom when I handed her to her, and to me when I took her out of her crib this morning. It seems very early for a first word, but what  delays she has physically, she is definitely making up for in cognitive and social areas! 

 

 

 

 

All throughout my pregnancy I worried that the NICU experience would interfere with our ability to really bond.  They say the first 24 hours are essential for establishing that connection and we didn't really get to for 42 days.  I was afraid it would hinder our relationship.  Thankfully some kids just seem to need constant snuggles more than others and Makenna is one of those kids.  She loves being rocked, worn, nursed, and held by me.  She definitely prefers me to anyone else and will cry if I'm not there.  She is all about mommy all the time, which is great because she has become my world.  Some people think I am spoiling her by holding her so much, but I really don't think it is possible to spoil a baby.  She might have a little more separation anxiety than some other babies her age, but she is learning that she can rely on me for support and comfort anytime, day or night. 



Little Night Owl!

Speaking of night, this month 4 month sleep regression hit our house like a ton of bricks and I haven't slept since.  She went from sleeping through the night to awakening 5-7 times a night.  I've tried every trick in the book (okay, multiple books), but nothing has helped.  This little social butterfly would just rather hang with mommy than sleep alone in a crib.  





Medical Stuff 

We have been documenting her head circumference since the hospital for hydrocephalus.  For the longest time it was normal; however, lately she has gotten further and further away from her curve. We need to go back to Gainesville in a week or so and have her evaluated.  I really hope and pray she doesn't have to go through another surgery/period of recovery.  This poor baby has already been through so much.  

The last big thing this month was figuring out what is wrong with her.  Last month I mentioned that we thought it was MSPI, a milk soy protein intolerance; however the pediatrician wanted to be sure it wasn't something else more serious.  It took three weeks to get the results of her cultures, but thankfully everything came back negative.  She doesn't have an infection such as e-coli or salmonella. With that eliminated we now know it is an allergy or intolerance of some sort.  So I have spent the last month on an elimination diet.  Unfortunately dairy takes 4-6 weeks to get out of your system, so it became a waiting game to see if eliminating dairy/soy would work.  Luckily on week five we saw a marked improvement.  Her eczema is gone, congestion is better, she is not as fussy, and seeing blood in her diapers became more rare, but was still happening.  Next I eliminated nuts, this seemed to help a little bit more, so now I am on a nut free, dairy free, and soy free diet.  I sure hope she outgrows this as time goes on!  She is a much happier baby though, so it is total worth it.



Height:  24.5

Weight:  13lbs

Eyes:   Still grey, but a little lighter.

Hair:  Dark brown

Clothes:  Most 3-6 month clothes fit well, but she is wearing some 6-9 month clothes.

Diapers:  We used size 1 honest company diapers and one-size cloth diapers all month, today we will switch to size 2!.


Food:  She is still exclusively breastfed.  I attempted to supplement with a hypoallergenic formula this month, but she wants nothing to do with it!

Sleep:   Mentioned this above...but she is still waking up several times a night.

Favorites:   Makenna really loves reading, her sleep suit, a taggie giraffe, Sophie the giraffe, and her new teethers.