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.

All About Makenna: 4 Month Update

Wow!  4 months already!  This has been a month of incredible growth and development for Makenna.  It seems as though every few days she learns a new skill and leaves Rex and I saying "Woah, did you see that!?!"  She has now definitely transitioned from being a "newborn" to a "baby."  It is so exciting to witness.  For the longest time she was this small 6-9 pound little girl.  She felt so fragile and lacked control of her movements.   Now she is almost 12 pounds, feels so strong, and is very alert.  She smiles a lot and even laughed for the first time this month (2/2).  It was so adorable!  She literally went from just smiling to belly laughing and giggling for 5 straight minutes!  Since that day she will giggle every so often when we play peek-a-boo or if she just finds our words or actions silly.  She also loves when we call her "miracle" and when I say  "I love you."  She gets huge  smiles and starts to giggle as if she knows those words are more special than other words.



 She has also begun interacting with toys a lot more.  She will now look at something and make a conscious decision to reach out and grab it.  She loves holding onto things, especially plastic rings, and has even begun bringing objects to her mouth.  When she is sitting or laying down she is constantly putting her hands in her mouth as well and has started to suck on her fingers and thumbs.   Despite my many efforts, she still isn't interested pacifiers though, so there is a good chance she will be a thumb sucker.  She has also begun drooling a good bit. I have a feeling we may see a tooth in the next month or two.

Typically I do not include medical stuff in my "all about Makenna" entries; however, this month we had a couple noteworthy things I feel compelled to include!  For starters, we went to visit Dr. Kays on 1/27 for her first check-up.  He said he was tired of seeing pictures of her on Facebook with the nasal cannulas, so he decided it was time to come off oxygen (Pretty sweet that he takes the time to follow his kids on Facebook!). Now that he took her off, it is so fun seeing her without oxygen and being able to have complete mobility for the first time in her life.  It was also amazing to walk into the hotel that night and not get stares, pity, or comments of concern from everyone who happened to notice the giant 3 foot oxygen tank.  For the first time she was just seen as a regular, healthy baby.  What an accomplishment!  We also took her to Jacksonville to have her tongue and lip ties released with a laser.  She did fantastic during the procedure.  We hope this will be the solution to her inefficiencies with nursing.

This month we also discovered that Makenna probably has an intolerance to dairy and/or soy.  I have eliminated it from my diet to see if it will help her symptoms go away.  Unfortunately it takes 3 to 4 weeks for dairy to get out of your system completely, so we won't really know if she has an intolerance for a while longer.  As much as I love cheese, butter, etc. and don't want to give it up, I still kind of hope it is her problem so that she can start feeling better.

 

It is truly amazing how fast the last 4 months have flown by.  It is hard to believe that the little girl asleep in my arms is the same baby that was fighting for her life on ECMO just 4 months earlier. 

 

Some stats: 

 

Height:  Either 23.5 or 24 inches

Weight:  11lbs 11oz

11/10/13  -  12/21/13  -  1/21/14

 

Eyes:   Still a beautiful slate gray!  We thought they might turn brown like Rexs', although lately it appears they might be getting lighter.

Hair:  Makenna's hair has started to lighten a little.  It is very close to the color of my hair now.  It is still long with the peacock swirl.  I measured it the other day and it is almost 3 inches long! 

Clothes:  Most 3-6 month clothes fit well, although her 0-3 shirts still work as well.  Some of her 3 month pants are starting to be too short!




Diapers:  We are still using size one honest company diapers and one-size cloth diapers.
Food:  She is still exclusively breastfed.

Sleep:   Makenna is definitely experiencing 4 month sleep regression.  She is now waking up several times a night.  I'm hoping she is better sleep trained soon, but until then I'm just going to do my best to enjoy every moment I spend with her...even if it is the middle of the night!

Favorites:   Makenna loves her piano play mat and her new "snug-a-bear" swing.  She also really likes play with her hands and look in mirrors. 

  

Ice storm in Florida!

 

First walk without oxygen!

 

 

Check out her one, two, and three month updates as well!

 

Challenges!

Even when the surgery to correct CDH is successful, the defect still has lasting effects and leaves behind challenges to overcome.  These challenges are different for every "cherub," but here are the challenges we are facing with Makenna.

Oxygen Therapy:

One of Makenna's largest challenges to overcome was coming home on oxygen.  When it was finally time to leave the hospital, her lungs were still a little to immature for breathing 100% room air.  Being at home with the oxygen never really became easy, but the challenges associated with it quickly became normal.  At the house we had a 55 pound oxygen concentrator with a 25 foot line.  Makenna was tethered to the concentrator which meant she could only travel a 25 foot radius around it. We placed it next to our bedroom door and that allowed her to reach most of the living room, the kitchen sink, and half of our bedroom.  She couldn't go to her nursery or to the bathroom for baths unless we moved the concentrator, which didn't happen often.  We also had to be very careful because as we maneuvered around, her line often got caught or wrapped around the furniture and that pulled on

her face or made it easy for us to trip. Oxygen also meant that Makenna had to have her nasal cannulas on all the time.  She was definitely use to having them on and most of the time we could get away with minimal tape; however, she learned that she could grab them and rip them off if she wanted to.  We had many days that were spent constantly replacing and re-taping, which got really old.  Oxygen also dried out her sinuses, made her congested, and the tape left irritated welts on her cheeks.  But it gave her the added support to breathe with little to no struggle and it definitely gave us a piece of mind. I liked knowing that she has a little extra support while her lungs were getting stronger.  Thankfully after 110 days of assisted breathing the oxygen was removed on 1/27!

Physical Therapy:

Not all CDH babies need physical therapy, but those on ECMO or with extended NICU stays might due to motor delays that require assistance.  Makenna receives an hour of physical therapy a week and practices her therapy exercises with us several times a day.  When she was on ECMO her head was turned to the side for a couple weeks.  This caused her to develop something called torticollis in her neck.  Torticollis basically means the muscles in her neck aren't equally developed, so her head tilts to the side and cannot be held straight at midline.  As a result she still doesn't have good head control at almost 4 months old.  She also has uneven tone in her arms and legs because she consistently favors one side over the other.  This is because in the hospital 1 arm had her arterial line and a splint and one leg had a picc line, so she couldn't move them very easily.

Behavioral / Occupational Therapy:

Having been on ECMO puts her at risk for delays in cognitive ability.  As a result she receives services through "early steps" for an hour a week to work on various age appropriate cognitive skills.  This includes tracking objects with her eyes, reaching for things, and identifying which direction noises come from.


We spend a lot of time working on this stuff each day as well.  So far (in my opinion) she isn't showing signs of cognitive delays, but she is definitely desensitized to certain noises and lights.  She doesn't follow beeps or lights with her eyes...this could be a sign of delays, but I blame it more on being in the noisy and bright NICU for so long.

Manual Therapy:

Makenna had a tongue tie and lip tie that were causing difficulties nursing effectively and gave her tongue protrusion.  It seems as though this is a common problem with CDH babies, possibly because both CDH and tongue ties are both midline defects. Who knows!  We had them released with a laser, but for the next couple of weeks we have to massage her mouth a few times a day to keep it from reattaching.  She is working with a lactation consultant on how to feed efficiently and visiting a chiropractor for bodywork.  I'm not exactly sure what her chiropractor did; however, after her first visit Makenna did 10 minutes of tummy time without fussing once!  Prior to her visit we could only get a few seconds before she would start screaming, so whatever she does works wonders.

 

Reflux:

Makenna was never given a GI test, so we don't know the extent of her reflux.  I'm sure she has some reflux; however, from what we can tell it is being well controlled with medicine.  There is a chance that her reflux is worse than we think and just isn't causing her to spit up.  However, she is gaining weight, so thankfully she doesn't need the Nissen surgery or a gtube.

Medicine:

Makenna receives reglan, pepcid, lasix, and vitamins with iron everyday.  Each medicine has it's own requirements (given 1, 2, or 3 times a day) and the vitamins have to be taken separately because they hurt her belly.  As a result we have a strict medicine schedule we follow, which includes administering some medicine in the middle of the night.  Thankfully we have begun the process of weaning off some of the medicines.  It will be nice to have one less thing to worry about each day.

 

Head circumference:

As a result of ECMO we need to keep close tabs on her head circumference.  ECMO can cause "water on the brain" (hydroencephalitis), so it is important to monitor her closely for possible signs.  When we first brought her home this was done with weekly pediatrician visits for six weeks, but since her head growth has been consistently normal, we now get to measure her weekly at home.

 

Milk Soy Protein Intolerance:

Makenna has been fussy, gassy, and congested since we brought her home.  She will wake up from a sound sleep screaming in obvious pain and she groans/grunts constantly.  She also has mucousy stools with streaks of blood and an eczema type rash.  After many pediatrician visits where her vitals were great and they said she was fine, we finally have a possible cause!  It is most likely a milk soy protein intolerance induced by the quantity of antibiotics/medications she's been on since birth.  It is likely that the antibiotics have striped the good bacteria from her system leaving her intestines inflamed.  As a result her body is having trouble breaking down the protein in dairy and has begun to see milk protein as something it needs to protect her from, creating an intolerance.  Since she is exclusively breastfed, I have eliminated all dairy from my diet to see if it helps.  We are also goings to start giving her infant probiotics to help build back her the good bacteria in her gut.  I hope this is the answer to helping her tummy troubles.

Meeting with Dr. Kays:

 Every 6 months or so (eventually once a year until 18) we will go back to visit one of our favorite men.  Dr. Kays and his team will check her vitals, track her weight gain, evaluate her meds, and look for signs of her hernia returning.  Her most recent visit on 1/27th resulted in her being taken off of oxygen and starting to wean off of some medicine!

Staying Healthy:

The last, quite possibly worse, part of recovering from CDH is the isolation.  It is vital that she does not get sick because her lungs aren't strong enough yet.  This means she must stay home and away from people.  We go to great lengths (and through a lot of hand sanitizer) to keep her healthy.  Only our immediate family and her doctors/therapists are allow to see her until after flu/RSV season.  They are all required to have the flu shot and pertussis shot and must be healthy to enter our home.  Also all of her therapist comes to our house first each morning so they do not bring germs from other children they work with into our house.  Makenna receives an RSV shot every month as well.  This will hopefully lessen the severity if she were to somehow, dispite our efforts, contract RSV.


So there you have it... a look into our life after the CDH repair.  Some days I feel as though I need a secretary to help me keep track of all her different appointments each week and medicines/exercises each day.  It is a lot to keep track of, especially since she still needs to maintain normal "baby" experiences (I.e. playtime, walks, reading, and listening to music) as well.  Thankfully I am blessed to be able to stay home with her.  I know my continued devotion is what she needs to overcome these challenges.

Until she overcomes her challenges I can't help but celebrate every little thing she does and every milestone she reaches.  When you almost lose your child you see them in a completely different light.  I'm not saying I love her more than other moms love their babies, but I definitely feel that I love her a little bit differently.

CDH can't keep us down.  My baby fought like a cherub and showed CDH that she's not to be messed with.  Everyday I am in awe of her strength.  Despite everything she always has a sweet smile on her face.  I must admit seeing her strength gives me the strength to keep fighting. 

All About Makenna: 3 Month Update

Her first month was spent in critical condition, her second month was spent with a cold, and her third month was just right!

It's hard to believe my little girl is already 3 months old and that she has been home for 7 weeks.  She has officially spent more time here then she did in the NICU!  Now that we have been home for so long and things are running much more smoothly, our time in Gainesville seems so long ago. 

 

This month has been filled with many exciting moments. For starters, Makenna has become very social.  In fact during her evaluation for physical and behavioral therapy, they said the average social skills score is 85 and Makenna scored 125!  She has really begun to smile like a pro and smiles at everyone, all the time.  You can tell she is enjoying being home and is having fun experiencing things for the first time.  This month she discovered her voice too, which is insanely adorable! She loves to coo and will have back and forth conversations with us that can last for upwards of 5 minutes!  It is exciting to hear her coo and tell me all about life.  After seeing her sick and fragile for so long, it is very cute to finally see her so happy.  I can tell she loves life and that she loves us. 

Once Rex went back to work, it was just Makenna and I at home all day.  As a result we have gotten to spend a lot of time together, just Mommy and Makenna.  She has really started to show a strong attachment towards me and preference for me above other people.  Recently she decided that she loves nursing and has pretty much completely stopped taking bottles and has weaned herself off of the pacifier... now the only way to soothe her or feed her is for me to nurse her, which I think is all part of her master plan.  All we do is sit and nurse all day every day.  I don't mind too much, though it makes it hard to get other stuff done.  Housework and cooking have definitely taken a backseat  because I will never get this time back and we already lost so much time while she was in the hospital.  Chores can wait.



Another new talent of hers is the ability to mimicking people.  If I stick my tongue out, she will copy me.  She will also occasionally repeat the "oo" sound if she hears us say a word that has the sound, like do or you. 

This month she also found her hands!  Her hands have become her favorite toy.  She will sit and look at them, touch them together, and stick them in her mouth for the longest time!



Some Stats!





11/10  vs  12/21

Weight:  10 lbs 7 oz!  3 pounds in 1 month!  (Great to see that all of our mommy and Makenna time is working!)  This is still about the 5th percentile, but she stayed on her curve, so that is great!

Length:  23 inches (25th percentile)
 

 

Eyes:   Still a beautiful slate gray.

Hair:  Makenna's hair is still long with the peacock swirl.  It has started to lighten a little bit and the roots look a little more reddish blonde.   I was born with dark hair like hers and it all fell out and grew back blonde....I wonder if hers will do the same?! 



This fit a week ago!

Clothes:  Right before she turned 3 months Makenna out grew her newborn clothes!  She is now in 0-3 and 3 month clothes. 

Diapers:  We have begun the transition to cloth!  I purchased several different types of diapers before she was born.  I have been doing test runs to figure out which brand I like best so that I can purchase enough to fully transition!  Until then is in size 1 Honest Company diapers half the time, which I actually love!

Sleep:   Makenna has put herself into the routine of napping from 7:30pm to about 8:30pm.  She hangs out with us for a while and then I swaddle her and nurse her to sleep at about 10.  She sleeps until about 3am, awakens to be fed, and then sleeps until Rex gets up for work at 5. At that time I put her in bed with me and we hang out snuggling (I'm awake) until it is time for her medicine at 8.   

Favorites:   I read to Makenna everyday and she loves it!  Her eyes fixate on the book and she will sit and listen as I read story after story!   She also really loves the Christmas tree!  Any time she is fussy we will sit her in front of it and she will stare at it mesmerized!

 

 

 

 

Check out her one and two month updates as well!

All About Makenna: 2 Month Update

Month two for our little miracle was more exciting and a lot less scary!  The first two weeks of this month were pretty much spent learning how to eat, which for us was a huge milestone.  Makenna was finally allowed to nurse on demand and she definitely enjoyed her new found source of comfort and began requesting special mommy time often (no complaints here!!)!   During this month she also had her first bath!  After she was born they were not able to wash her due to the fact that it would cause too much stimulation that would make her body have to work to hard.  As a result she had to wait until 5 weeks old for her first bath.  This was also the first time we got to see her without any wires and her oxygen!  It was so cute.  Best of all -- this girl absolutely loves baths!  The nurse said she has never seen a baby do so well during their first bath.  :-)  

 

This month we found out that we need to watch her development closely because CDH babies (especially those who went on ECMO), can have developmental delays.  She was 3 weeks early, spent 10 days on ECMO, and 28 days sedated laying on her back in bed.  She also had limited range of motion in her arms and legs due to IV's, lines, and splints that made it much more difficult to practice moving her body.   As a result she is expected to have delays.  In fact, they said that because of all of these factors we need to think of Makenna as 4 to 6 weeks younger than her actual age.  So while some milestones might be expected for a 2 month old, we shouldn’t expect to see them in Makenna until about 3 months.  Thankfully she will be getting physical therapy and behavioral therapy each for an hour a week to hopefully combat any delays she may have.  It is a little scary to think she will have delays, but it has made every little milestone she hits that much more exciting!

Anyway, at 6 weeks she was finally able to come home for the first time.  This was definitely an adjustment for all of us.  We loved the opportunity to bond with her in the comfort and privacy of our own house, without all the monitors beeping and wires awkwardly tying her to machines, but it took a little time to get use to our new roles!  The most challenging part was that she came home with her days and nights a little bit confused.  In the NICU activity continues around the clock and the nurses are always there do hands-on time every 3 hours.  She got into the habit of sleeping for 3 hours and then being awake for three hours around the clock.  It took several very long sleepless days and nights to get her into a better routine.

In her very own bed for the first time!

Also shortly after getting her home our sweet happy baby disappeared and was replaced with a cranky inconsolable baby.  It was heart-breaking to see her so upset all the time and it took a lot of the “fun” out of finally being home.  She cried and fussed constantly....nothing seemed to make her better.  The pediatrician said it was colic, but I knew it wasn't.  She looked like she was constantly in pain.  We tried all the typical “colic” remedies though because we didn't know what else to do.  We tried gripe water, gas drops, purchased new bottles designed for colic, and everything else we could think of---nothing worked.  She was still miserable all the time.  Finally one day I heard a little rattle in her nose.  I decided to suction her and sure enough, it was infected.  We brought Makenna back to the pediatrician and she said Makenna had a sinus infection. 

 

Her pediatrician is wonderful and very attentive.  Since Makenna is a CDH baby, she wanted to be extra certain it was just a sinus infection.  She did an RSV test and then sent us to the hospital for blood work and x-rays of her chest.  The hospital read her x-rays and said she had pneumonia and wanted to admit her immediately.   Of course given her CDH lungs this was some of the worst possible news; however, if she was being admitted anywhere it was going to be at Shands.  I called Joy to see what we should do and she said not to worry, Makenna most likely didn’t have pneumonia.  Apparently CDH lungs often look like pneumonia lungs and she was probably fine.  She had Dr. Kays immediately call our pediatrician.  They talked and came to the conclusion she just has quirky little CDH lungs.  WHEW!  Have I mentioned lately how much I love Dr. Kays’ and Joy?!   Makenna was given antibiotics and within a couple of days she was back to being our delightful little girl!   In fact, once she started feeling better, she finally gave us her first real smile (one not caused by gas or sleep - 12/9/13)!  She definitely has a smile that can melt your heart.
 

 Some Stats! 

Weight:  At 2 months Makenna officially weighed 7 pounds 7 ounces, which placed her in the 5^th percentile.  The 5^th percentile sounds low, but she was the 2^nd percentile at 1 month, so it is definitely a step in the right directions!

Length:  22 inches   (up from 21 inches at 1 month)

Eyes:   Still a beautiful slate gray.

Hair:   Makenna’s hair is still dark brown and she has what we call a peacock swirl (though most would call it a cowlick) on the back of her head that makes her long hair stand straight up.  There is nothing we can do to keep it down….even wet it stands up.  I love it though!

Clothes:  Last month newborn clothes were too big for our skinny little girl, this month the newborn clothes fit well.

Sleep:   Ugh.  Let’s not go there…. ;-)  Just kidding, as stated above she pretty much sleeps for 3 hours and then is a wake for 3 hours.  We don’t really have a night time routine at this point because of her being sick (clingy) and inconsolable, we are just in survival mode.   Rex took 2 weeks off of work when we got back, so for the last two weeks we tag team at night the best we can and he gives her bottles of pumped milk while I attempt to sleep. 

Favorites:   Makenna loves the ERGO, she typically falls asleep as soon as I place her in it.  She also really loves her Rock n’ Play, which is where she sleeps for now, and bath time.  She is still uninterested in toys, but she has been sick and hasn’t been very interested in much of anything!

Check out her one month update as well!