Happy World Down Syndrome Day!

March 21st is World Down Syndrome day because people with Down syndrome have 3 of the 21st chromosomes.  :)  To celebrate, we wear lots of crazy socks so that people will ask you why and you can raise an awareness of Down syndrome.  I am so grateful that I live in a day and age where people are so loving, caring, and understanding towards people with Down syndrome.  I can hardly believe the support system that is already set up for me to give Ella the best chances.  She has already had help from the following, pediatrician, nutritionist, lactation specialist, audiologist, ENT doctor, cardiologist, hematologist, nurses, physical therapist, speech therapist, Down syndrome foundation president, social workers, teachers, grandparents, aunts, uncles, cousins, great grandparents, great aunts and uncles, friends, etc.  Isn't the list amazing?  I am sure that I have missed somebody too!  Words can hardly express the gratitude that we feel for all of this support!  Ella is one blessed little girl!

How is Ella doing?

I get this question a lot and most people want more than the regular answer of “good” or “great” . . . . . so here it goes.  She is doing absolutely wonderfully!  I just simply can’t explain to you how blessed we feel!  Being born with Down syndrome comes with a large list of health problems that Down syndrome babies tend to have. . . . heart defects, low muscle tone, poor lungs, digestive problems, hearing loss, leukemia, etc.   . . . Ella has none of these!

Here’s how Ella’s doing:

·        - Directly after her birth she had low blood sugar but that was corrected rather quickly with an IV and some food.

·       -  She spent her first 8 days in the NCU because of an infection that was taken care of by antibiotics given to her through the IV.

·     -    She was having blood cell counts that were off and had to have her blood drawn out of her little heals a ton of times.  We were told not to let anyone see her until her counts were back on and we were so glad to get the news last time her blood was drawn that the counts have worked themselves out and we are free to have visitors! 

·      -   They did an echocardiogram on her heart and there are no heart defects.

·       -  She is eating from a bottle wonderfully but has a hard time nursing due to congestion.

·        - She is gaining weight – She now successfully weighs 7 lbs. 6 oz.!  She’s 6 weeks old and still only fits in newborn sized clothes and diapers but that won’t last very much longer.

·         -She sleeps well at night and usually tends to give me 3-5 hour stretches.

·         -She had oxygen as a precautionary measure for the first month and is completely finished with oxygen and is completely monitor and cord free!  That makes it so much easier to take care of her. 

·         -After failing 3 hearing tests, at the hospital, we were sent to an audiologist.  The audiologist did 3 hours worth of tests that Ella was supposed to be well-fed and sleeping through.  Talk about stressful!  Anyway, I shouldn’t have worried because she did so good that we only had to go to the audiologist twice as opposed to most infants it takes 3-5 visits to finish the tests.  We were told that she has mild to moderate hearing loss but that her auditory nerve worked perfectly so it was a sign of a blockage and would most likely be fluid or bones or cartilage.  So then we went to the Ear Nose and Throat doctor and it only took him 30 seconds to tell me that she just had fluid in there and it could be corrected by putting tubes in her ears which is a very common procedure and no big deal!

·         -The Ear Nose and Throat doctor commented several times how her ear canals were a typical size and not small like is expected for a Down syndrome baby.  All of the nurses and doctors have commented on how she doesn’t seem to be a typical Down syndrome baby . . . she is very active and very healthy.

·         -We had a physical therapist come to our home and work with her and he said that her muscle tone and strength is very similar to any infant her age and nothing like most Down syndrome babies deal with.  I told him that all of the nurses have noticed this and that I noticed she was a strong kicker several months ago.  J

·         -Ella gets to be a part of the Up to 3 program at USU but she only qualifies purely because she is Down syndrome because everyone that has come out to our home and tested her and asked me questions about her says that her health and progress are doing too great to qualify for their program.   What great news!

·         -She is a very happy, active, and content baby and is easily soothed! 

·         -I am so in love with her and somehow she can make my heart melt when I have to wake up for the 3^rd time in the middle of the night and her brilliant little eyes sparkle and look up at me from her bassinet. -

-I am loving dressing her up in all of the absolutely adorable outfits, hats, bows, and blankets that everyone has given us!  She is so much fun and I l love being a mom!