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.