Tuesday, December 10, 2013

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 5th percentile.  The 5th percentile sounds low, but she was the 2nd 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!
 

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