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!

Our Sweet Little Angel

I’m not the same person I was two weeks ago.  Two weeks ago today I gave birth to a beautiful baby girl.  We couldn’t have been more excited!  We were totally prepared and ready for her to come.  Nate and I have been married for 4 ½ years.  We both have finished our college degrees and both have steady jobs.  We spent the last couple of years praying about, deciding and finally purchasing 6-acres of land in Newton, Utah.    Our decision was based on where would be the best place to raise a family, where they could learn to work, have great friends and neighbors, be part of a wonderful ward, be close to family and attend a good school.  We got all of the necessary insurance and made sure our finances were all in order to start a family.  We spent months making a perfect little nursery for her, decorated with butterflies, washing and folding every piece of clothing and blanket, and triple checking lists of things that you need for a newborn.  With all of this preparation, none of it prepared me to hear that our sweet little angel would be born with Down syndrome. 

 After 30 hours of labor, my sweet little baby arrived.  I asked the doctor to please bring her straight to my chest when she was born but instead they rushed her over to the warming bed and had three people frantically working with her because she wasn’t making enough noise or responding well at first.  I couldn’t even see her for a few minutes but Nate was standing over there with her.  I heard a few things that were going on and then I heard the nurse say, “There are some flags for Down syndrome.”  The doctor said, “You’d better explain to dad what you are seeing.”  They showed him a few things and then the nurse finally held her up for me to see.  I was in awe of the moment and I told the nurse, “She looks just like me when I was a baby.”  The nurse said that Down syndrome is sometimes hard to tell because she will think the baby has Down syndrome and then look at the family and not know.  I have to admit that I was a little bit angry with the nurse for even saying anything if there was still a huge possibility that she wasn’t Down syndrome.  Finally they let me hold her.  What a beautiful moment!  No matter what anyone said it couldn’t ruin that moment of holding her for the first time there with Nate and our perfect little angel.  In my heart I knew that she was Down syndrome and I knew that I had known for several months but I was definitely still in denial at this time and hoping that it wasn’t true.  It was only an hour later or so that the doctor came in and told us that he would be highly surprised if she wasn’t Down syndrome.  No matter how much I loved her and how much I had been prepared spiritually this was still hard news to receive.  It was accompanied with many tears over the loss of what we had expected for her life and worries of inadequacy for taking care of her followed by an overwhelming feeling of comfort and support from the Holy Ghost and from family and friends.  The most tears that I shed were over feelings of gratitude to so many loving and supportive texts, emails, messages, phone calls and visits.  I had many people tell me that I handled the news so calmly . . . here is why.  There was no physical preparation that helped me to welcome sweet little Ella with her disability but there has been months, years, eternities of spiritual preparation that have.  

The most obvious preparation that I could see started several months back.  In July of last year, I read a blog of someone who also had a sweet little baby with Down syndrome and all of their emotions.  The blog struck me to the core and I just bawled and bawled when I read it.  I then started worrying that our baby would be born with Down syndrome.  It bothered me for months but I kept dismissing it as hormones and me worrying for no reason.   It bothered me for long enough that I decided that I needed to pray about it and do some soul searching.  It wasn’t until this point that I was blessed with the sweet peace that if my little baby had Down syndrome or any disability, that it would be alright and not just alright but great because she would be exactly what Heavenly Father knew Nate and I would need.    Heavenly Father had been working on teaching us this lesson for quite some time now and the lesson is:  “Men and women who turn their lives over to God will discover that He can make a lot more out of their lives than they can.”  Ezra Taft Benson  We learned this lesson in searching for a job for Nate.  After much struggling, we learned that it did not matter where we lived as long as it was where Heavenly Father wanted us to be.  We had gained a strong testimony of this principle and had testified of it in church and to our Sunday school class several times.  Now it hit us again with full power of the Spirit that Ella was God’s will for us to help us grow and become more like our Savior. 

Now that I look back over the past few months I can see other tender mercies from the Lord preparing me to receive our little angel into our family:

·        A video for World Down Syndrome day posted by my Aunt.

·        A boy with Down syndrome moved into my kindergarten class a few months into the year.

·        A sweet new friendship made with a woman in my previous ward whose daughter has Down syndrome.

·        A funeral that I attended of a family friend who had many disabilities and he beat all odds and lived way longer than predicted.  His funeral was a huge eye-opener to me about how many lives he touched and made better even through all of his severe disabilities. 

·        The lesson in Relief Society the day before Ella was born was on adversity and wanting it in our lives to help us progress.

·        And the list goes on and on of the people and blessings that have come into our lives that will be a comfort and blessing to us in helping us raise her.

The family support that we have felt has been so wonderful.  The priesthood blessings, the prayers, the fasting have all been truly felt.  Ella is already SO loved by her grandparents, parents, aunts, uncles, cousins, etc. that any fleeting worry that I had about telling them that she was Down Syndrome just flew away.  I literally received nearly 50 texts within 1 hour of announcing Ella’s birth.  With all of the rush of getting her off to the NCU and working with all of the doctors and support team, I didn’t have time to respond to the texts but I read them and I cried tears of joy.  There have been so many comments that have been so appreciated but there were two comments that really struck me and opened my mind to something that hadn’t crossed my mind prior to the comment.  In my text I had stated how much Heavenly Father knew Nate and I needed Ella and I had a response from a dear family member that said, “The truth is that we all needed her in our lives.”  I again cried and cried realizing that she was here for a grand purpose just like any child of God is.  

The other response that was very eye-opening to me came from our pediatrician.  He was telling me that he knows someone who adopted two children with Down syndrome.  I said, “That just amazes me that someone would CHOOSE to have that in their lives.”  The doctor didn’t skip a beat, he said, “Don’t discredit yourself.  You CHOSE her too.  I believe that.”  “Wow!” I thought.  I know that I did choose to have her come to me in the pre-existence.  That is also another strong part of my testimony that was given to me so strongly about a year ago.  The Relief Society president in my old ward gave a beautifully spiritual lesson and there was something that she said that touched me so deeply and was testified to my soul.  She talked about how she had a friend with way more than her fair share of struggles.  The relief society president wondered why she had life so easy when life was so hard for her friend.  She prayed and learned that sometimes we don’t have the trials but that we are meant to be a comfort to those who do and that we promised that person in the pre-existence that we would be there to help them through their trial.  I know that when Ella found out that she would have Down Syndrome during her earth life that I promised her that I would love her and care for her here as long as she promised to inspire me to make the right choices to return to my Heavenly Father.

There is a song that made me cry every time it came on the radio during my whole pregnancy because it matched exactly how I was feeling.  I know that it is totally not what it was written for but man it all seemed to fit.  It’s “A Thousand Years” by Christina Perri.  I loved going to my appointments hearing her little fast heartbeat.  I knew that I had promised her in the pre-existence that I would love her no matter what.  Yet, I was still scared a little bit of the possibility of her having a disability but I would be brave.  But, when I saw her and held her my doubt suddenly went away because I knew I could take care of her and raise her with the help of my husband and the Lord.  I died everyday waiting for her especially that last month I became so anxious.  When I was given the choice to have the test to see if she had Down syndrome during my pregnancy, I decided I would not get the test because I didn’t care to know, because if she was Down syndrome I would still take her and never choose to abort her.  It tears my heart apart hearing some of the statistics of how many Down syndrome babies are aborted.  So my little Darling had no need to be afraid because I would accept her and carry her full-term and she would be mine for the rest of my life and throughout all of the eternities.   Every breath and every hour has prepared me for this moment.   “Time stands still, beauty in all she is, I will be brave, I will not let anything take away, what’s (laying) in front of me.”  “And all along I believed I would find you, time has brought your heart to me.  I have loved you for a thousand years, I’ll love you for a thousand more” and beyond.

So, when I say that I am not the same person I was two weeks ago.  What I really mean is that I am the same person, I just have discovered more of who I am and who I am meant to be and who I had promised to be in the pre-existence, a little more understanding of my divine nature and my purpose in life.  I am so grateful for my testimony of the atonement.  I know that my little Ella is a special and strong spirit and that she will be able to return to her Father in Heaven without a question.  I know that everything that I might grieve over like the possibility of her not getting married or not having children of her own will be realized in the hereafter and she will be blessed with everything that the Father has promised his children.  I couldn’t love her more and will try to live up to what she needs me to be.