Yo soy La Lay

adventures in family, faith, and Down syndrome

Dear Theresa

Dear Theresa,

As a NICU nurse, I bet you meet a lot of families like us.  Your primary job is to treat the patient, I know, but I bet you help a lot with the whole family’s emotional healing, too.  You did with us, that’s for sure.

The very hardest part of Tessa’s NICU stay, truthfully, was my complete incapacity to do well for both my children.  The feeling of being so desperately torn – to need to be home with the big one, who wanted to get ready for Christmas and go sledding and see the lights and do all of the holiday traditions, while also being emotionally incapable of leaving the new little baby’s side, was absolutely enough to push me to the edge.

We had a lot of support of course, but your presence is one that helped me stayed glued together more than most.  I don’t know that we even talked about Down syndrome during that week.  We must have, but it doesn’t stick out in my brain.  What I do remember is talking about mom stuff.  You shared stories of your kids.  I told you all about my crazy Ellie.  We laughed.  Oh goodness did we laugh!  We actually got in some trouble for laughing too much and disturbing the peace of that quiet little ward.

It was so good to laugh.

As we got to the end of a full week, you helped us to convince the doctors to let us bring her home for Christmas.  You talked to me about how she was ready, because nothing that was happening in the NICU couldn’t be done at home.  And you were right.  You even switched your shifts around to work on Christmas Eve so that you would be there to see us off.  And even though I was so scared to take her home, away from the watchful eye of you and everyone else, I felt like I could because you convinced me that I am enough.

Thank you so much for going above and beyond in your care of our little girl… and of me.  It made a bigger impact that you can ever know.

Most gratefully,

Tessa’s Mom

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This is part of the 31 for 21 Blog Challenge – blogging every day for the the 31 days of Down Syndrome Awareness month.  To find out more about the challenge, and to see other blogs participating, click here.

This year’s theme has been inspired by the Down Syndrome Diagnosis Network’s #deardoctor campaign.  To see more #deardoctor letters, visit their Facebook page here.

 

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Lesson #27: Great nurses rock our world.

While we have had our share of nurses that didn’t make us swoon, Theresa and Jan are forever ingrained in my heart as Heaven-sent women who were exactly what I needed at exactly the right time.

Theresa met Tessa within her first minutes in the NICU.  They bonded right away because of their common given name (little known Tessa fact: she’s actually a Theresa) and very quickly, Theresa claimed Tessa as her patient.  Theresa was outgoing and athletic.  Tessa has been our little scooter/swimmer/mover since long before she was born.  These two were kindred spirits from the get-go.

Our new little baby, exhausted from a feeding 

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Within the days that followed, Theresa and I chatted (and chatted and chatted) about everything under the sun while we waited patiently for Tessa to be well enough to come home.  I told her about our family and Ellie’s crazy antics.  She shared stories of her childrens’ wrestling tournaments and other quirky behavior. We talked about the struggles of now being a mom of two.  She encouraged me to take breaks to enjoy my older daughter.  At times, there may have been a few tears, but goodness, did we laugh!!  On more than one occasion in the week we spent tucked into that little corner room, other nurses from the floor came by and shut our door because we couldn’t keep the volume down.  We got a lot of “looks.”

Totally worth it.

She was exactly what I needed.  Theresa loved my little girl immediately.  She forced no unsettling stereotypes on us.  She helped me feel normal during a very unusual time.

She came in on her day off (which happened to be Christmas Eve) to say goodbye as Tessa was discharged.  We all cried.

Home at last…

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Jan was a different kind of perfect nurse.

In April, I was frustrated.  Overwhelmed with a hectic schedule, not able to get my students back on track after my maternity leave, tired of being a Grad School/Track Coach widow, stir crazy for warm weather, broke, and cranky, pneumonia struck and we spent a well-documented week in the PICU (here is the start).

Pitiful.  😉

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When Jan was assigned to Tessa, I was a little worried.  She was no-nonsense.  She was pushy.  She was on duty for the next week with only 24 hours off.

She was exactly what we needed.

There was no pity.  There was no woe-is-me.  We were to get the baby well and get on it with.  Jan was caring and compassionate, but she was on a mission to get our girl discharged.  And so we did.

Freedom!!

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We are so fortunate to have been under the care of these amazing women.  While I pray that we don’t end up back in the hospital, if we do, I hope that we will be lucky enough to cross paths with these ladies again!

 

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Lesson #3: Amanda really did us a favor

Amanda is the Nurse Practitioner that delivered the preliminary diagnosis of Down syndrome to John and I.  For a long time, I really struggled with her decision on how to tell us about Tessa.  But in celebration of Down Syndrome Awareness month, we’re sending her a letter of thanks.  Here’s the letter:

October 3, 2014

Dear Amanda,

You may not remember my family, but I am writing today to thank you for an experience that we had with you that I will never forget.  In December of 2013, my daughter, Tessa, was born at your hospital.  You might remember her looking like this:

Her birth happened very quickly and as I vaguely recall, you were called to the delivery because her heart rate was dropping.  Within moments after her delivery, while I was still in the process of delivering the placenta, you told my husband, John, that she had strong markers for Down syndrome.  We did not undergo any prenatal testing, so this news completely blindsided us.  I was frozen in that moment for a long time.

I will be very honest with you, at first, I was very angry at the way you shared her suspected diagnosis with my family.  I felt, at the time, that it could have waited until I was at least done with my labor and had had the opportunity to hold my sweet girl.  But with time comes perspective, and I want you to know that the way you shared the news with us was quite possibly the best thing someone has ever done for my family.  I have never felt angry or devastated about my daughter’s genetic make-up and while there are many factors that play into my outlook on Tessa’s life, you were certainly key.

You see, I have joined a lot of communities for families with children with Down syndrome since Tessa’s birth and have consistently heard horror stories of (probably) well-meaning doctors delivering a diagnosis like a death sentence.  However, the way that you treated her extra chromosome… as a passing fact rather than a defining characteristic… set a precedent for the way we have approached Tessa and her life.  She is our daughter, a person first, more alike than different.

Tessa is nine months old now.  She is happy-go-lucky, quick with a smile, laid-back, and is totally thriving.  Her older sister absolutely adores her.  She is the favorite “toy” in her daycare.  We were in tears when we got to experience her first giggles.  She is almost crawling on all fours.  My whole family is smitten with Tessa.  She has truly changed our life in the most amazing way.

The team at CDH who took care of us during Tessa’s time in the NICU was absolutely stellar and we recommend everyone we know to this hospital.  In the spring, when Tessa was admitted to a different hospital in respiratory distress (she had pneumonia), we insisted on being transferred to CDH once she was stable because we knew that the care our family would receive is unmatched.  I sincerely thank you for not defining my daughter by her diagnosis and for not giving us a single reason to feel sorry for our beautiful little girl.

Most sincerely,

John, Maggie, Ellie, and Tessa

PS: For other resources for delivering a Down syndrome diagnosis, I highly recommend the Down Syndrome Diagnosis Network.  They have great resources for physicians and familes alike:  http://www.dsdiagnosisnetwork.org/ 

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Matters of the Heart

We’ve come a long way from here:

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Depending on which book you look at, somewhere between 40-60% of children with Down syndrome are born with a congenital heart defect.  Most commonly, there is a hole in the wall that separates the chambers of the heart.  I was never afraid of Down syndrome.  I was terrified that something would be wrong with her heart.  Thankfully, her echo came back with no visible hole.  

We weren’t exactly in the clear, but this was a major hurdle emotionally for us.  Tessa spent most of her time in the NICU because of something called a PDA valve.  It’s a valve on the heart that is used while in the womb, but closes soon after birth.  Basically, blood needs to bypass the lungs when Baby is still in Mommy’s belly because Baby isn’t actually “breathing.”  Once Baby is born, though, it is breathing in the air and needs to send oxygen to the lungs.  Because she was a little early, Tessa’s PDA valve was still not closed.  Because of this, she had trouble with her blood pressure and maintaining an appropriate oxygen level in her blood.  On top of this, swallowing was difficult.  While she latched fine, she choked on her food, her levels would plummet, and we’d have a freaked out mommy and upset baby.

Two weeks after her NICU stay, we had another echo and ekg done and we were thrilled to hear that everything in Tessa’s heart looked normal.  Yay!!  We had a repeat ekg last week and once again, all is well.  The nurse insisted that we take a picture for Tessa’s baby book to remind her of the trouble she caused us so early on.  😉 Here it is:

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I recently watched a DVD about Down syndrome in which a mother discussed her son’s heart defect, saying that she had no fear of DS, but that, just like us, the heart problem was devastating.  The cardiologist explained to her that the condition, while terrifying to her, was something that was routine… they saw this kind of defect every day and the surgery, while major, was not out of the ordinary.  I’m sure it’s something that we could have overcome also… but we continue to praise God everyday that He blessed Tessa with all that He has given her.  There is just no stopping this girl!  

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