Yo soy La Lay

adventures in family, faith, and Down syndrome

PICU

The smell first hit me as I was riding in the front seat of the ambulance.

Sterile, yet pleasant, like nurses and latex and clean receiving blankets covered with blue and pink feet.

We are back in the hospital.

As I wrote the other day, Tessa has had a cough and a fever for a couple of days.  We decided to take her to the doctor to have her checked out.  She seemed to be breathing a little faster than normal and had not been able to eat as well as she normally can.

In the doctor’s office, the nurse wanted to get an oxygen level reading on Tessa to make sure her levels were good.  This is a reading that we are very familiar with.  It’s the blue number on the monitor.  We know quite well that it needs to be in the upper 90s-100.

It’s never a good thing when the nurse tells you that she doesn’t think her machine is working right and wants to try a different one.

When she left the room, John peered at the number.  77.  We knew that we were hospital-bound.

The nurse practitioner that we were scheduled to see came in quickly, did another reading on the new machine and said that she was sorry to have to tell us this, but she was going to call 911 and have the paramedics take us to the ER because Tessa was in respiratory distress.  Soon her pediatrician was in the room explaining things to us in more detail.  She was working really hard to breathe; at one point they counted 100 respirations a minute.

Meanwhile, Ellie is sitting next to me playing with my iPod and announced that it was time to dance.

The paramedics loaded me up onto the stretcher, Tessa in my arms, and sent us to the hospital.  It’s kind of odd to be wheeled out through the waiting room holding a teeny baby in an oxygen mask.  People stare.  I totally would stare, too.

Once Tessa and I left, Ellie looked up at John with a little quiver of the lip and he told her that everything would be fine.  She responded, “Yeah, but where are those boys??” She was far more concerned about the paramedics being gone!

In any case, we ended up in a Pediatric ER and once we had her stabilized there, they transferred us over to the hospital where Tessa was born.  We wanted to be where her doctors were, where her records and history were already established.  On the way over, they put her into a little isolette (one of those incubator things) and she was MAD.  Literally and figuratively, Tessa does not like to be put into a box.  She likes to be free to be herself.  🙂

Here is what we know:  Tessa has pneumonia in her left lung.  We have her on an antibiotic to fight any bacterial infection that may be present and are testing for viral infections.  She does not have RSV.  They are doing a full panel to try to find the cause of her illness.  When we were leaving the ER and headed to the NICU, she was on 100% oxygen.  She’s now down to 65%.  They have her on a Bubble CPAP (same type of thing used for sleep apnea).  The goal today is to get her off the CPAP and onto the high flow oxygen.  She has been on an IV for nourishment and they will place an NG feeding tube today so that she can get some food in her tummy.  She has felt very, very hungry and, like her momma, when she’s hungry, everyone suffers.  A full tummy should bring back some smiles!

Also, Ellie has pink eye.

When it rains, it pours.

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One sickie, two sickie, three sickie? Four??

One of the blessings of being a teacher is that we get a good amount of time off with vacations and holidays plus a number of “sick days” to use throughout the year. I was fortunate enough to have enough days to get me through six weeks of my maternity leave before having to take unpaid time off. The problem we have now encountered is that I’m out of days… And suddenly, I’m needed. And also feeling my own aches developing in my throat and ears.

Tessa’s fever has not diminished yet and now John has developed symptoms that we think may be strep. In addition, Tessa has a follow-up visit soon with her doctors from the NICU… and then there is the surgery coming up. The stress that I am carrying around these days is that I am simply unable to be there for my child and family. I can take a day unpaid for her surgery, but more than that is simply not feasible. We’re teachers. We have many student loans and a mortgage and a car payment. Frazzled is pretty much the only way to describe this house right now.

We’re asking for two prayers tonight, if you’re so inclined:

1. That Tessa’s illness be nothing more than a cold or something that can be treated at home… and

2. that Ellie not catch this bug or any other. For the sanity of all of us, that girl must stay healthy.

I’ll be chugging orange juice and other forms of vitamin C until this storm has passed.

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Well that escalated quickly…

I love my Sunday night wind-down. The evening before the work week begins is so sacred to me that I refuse to make Sunday evening plans. Ever.

(So I guess if you have invited me to do something on a Sunday and I have declined, you now know it was for my own selfish reasons.)

Daycare bag packing. Water bottle finding. Sunday night dinner at the table together, usually take-out. Gathering up a few things to come to school with me… are my pants wrinkle free? Nope, better hang them up… Girls in bed, Ellie’s MeReader telling them a story that I can hear on the monitor… Then checking in on Facebook or Pinterest while drifting off to sleep… This is my ritual. It’s my peace before the crazy rush of a Monday. But not tonight.

Tessa has a cold, again. This one is worse than the others have been, complete with her first fever. The cough is kind of brutal, but it’s productive and I’ve had the distinct joy of pulling globs of nastiness out of her mouth for the past couple of days. She’s asleep in her car seat in her little corner of our closet now.

About three hours ago, we were driving home from a day with my family. John was talking about catching up on the DVR and I was telling him that I was looking forward to some quiet time on my long-neglected Pinterest boards. When we walked in the door, suddenly there was a crying, hangry (love that new word!) toddler with no interest in eating anything but milk. Then the other one is crying, but can’t eat without gagging on the bottle. My mom is calling to tell us that she has a fever also and then we’re trying to put the girls to bed and Tessa needs Tylenol, but it’s expired and then I’m at CVS to buy meds, but I’m stuck behind a crazy coupon lady with fourteen boxes of band aids. Back at home, Ellie is screaming about the unfairness of her bedtime and Tessa is throwing up on my shoulder and John and I are wondering how the heck our Sunday has turned into a tornado of chaos.

It is the kind of evening that makes me happy to go to work on Monday… even knowing that all day, I’ll be thinking about my little sickie.

How many days until Summer??

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Tubes

We had a follow-up visit with our Ear Nose Throat (ENT) doctor today. If you recall from my three-month update on Tessa, we were checking to see if the fluid in her ear would go away if treated with Nasonex.  A month has passed since then and the fluid is not gone. Because of this, sometime in the next couple weeks, Tessa will have her first surgery – she is having tubes put into her ears.  While they have her under the general anesthesia, they will also do the camera-down-the-throat check to confirm whether or not Tessa has laryngomalacia (see more here), reflux, or something else. It’s great that she is eating upright, but we are still hearing squeaky noises (called stridor) and she has a recurring cough/congestion that we want to check out. We are thankful to have a proactive doctor… and one who can do the procedure so quickly!  She will have the tubes put in AND the bronchoscopy (not sure how to spell that one!) in a procedure that only takes 10-15 minutes!!

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How Great Thou Art

My faith has always been quiet.  

Please don’t mistake my quietness for weakness.  While I tend to be am bossy in most other aspects of my life, for me, my faith life is one of quiet example rather than outward and vocal evangelism.  I don’t prefer to reference my faith in conversations with friends or strangers.  It’s not uncomfortable for me… I could probably write a thousand words trying to explain my behavior.  Suffice it to say that it’s just not my style.

However, as I sit in the early morning light of a peaceful Holy Saturday morning, I feel the itch to share one of my favorite hymns.  How Great Thou Art was one of my grandma’s favorites also.  In my memory, she (the woman for whom Tessa was named) also lived a devout, but quiet, Christian life.  I vividly remember this song playing in her home, surely recorded onto one of her millions of cassette tapes, though by which artist I have no idea. Today, I’m feeling so very blessed for these memories.

O Lord my God, When I in awesome wonder,
Consider all the worlds Thy Hands have made;
I see the stars, I hear the rolling thunder,
Thy power throughout the universe displayed.

When through the woods, and forest glades I wander,
And hear the birds sing sweetly in the trees.
When I look down, from lofty mountain grandeur
And see the brook, and feel the gentle breeze.

I haven’t been on a nature walk lately, but in my own home, I can see all of the blessings that God has provided us.  Dusty picture frames with captured memories of loving, joyful times… dirty dishes with remnants of delicious meals shared with each other… the lingering sweet smell of a bonfire on the back patio.  Every rowdy visit from the tickle monster and every cuddle on the couch with a sleepy child… None of these moments are guaranteed to us and yet, our life is full.

Where my heart dwells today, on this Easter weekend, is here:

And when I think of God, His Son not sparing;
Sent Him to die, I scarce can take it in;
That on the Cross, my burden gladly bearing,
He bled and died to take away my sin.

When Christ shall come, with shout of acclamation,
And take me home, what joy shall fill my heart.
Then I shall bow, in humble adoration,
And then proclaim: “My God, how great Thou art!”

I am overwhelmed today by the gift that God has given us.  To send His Son to die so that we may eternally live with Him in Heaven… what pain must have filled His heart to see His own sweet child suffer and die.  And still, what joy that we may all share in the bounty of His love!!  The blessings of my earthly home are countless and I cannot imagine what is in store for all of us when we are called home with Him. 

Then sings my soul, My Savior God, to Thee,
How great Thou art, How great Thou art.
Then sings my soul, My Savior God, to Thee,
How great Thou art, How great Thou art!

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Belly Sleeper

I just went in to check on the girls and found Tessa asleep on her belly.

We did not put her down this way.

We knew that she could roll from back to belly, but she hasn’t ventured into the world of tummy sleeping until tonight.

Sweet Jesus, how am I going to get any sleep?!

I realize that all you moms with kids around my age are chuckling at me right now. My own mother always tells me “all YOU kids slept on your bellies and here you are today!” Yeah, yeah, yeah. But modern advances in medicine have changed a LOT of our ideas about infant safety. Take car seats for example. Have you ever seen a car seat circa 1985?? Yeesh.

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It seems to me that now, medical professionals subscribe to the idea that if you put your baby flat on her tummy and do not watch her every breath, she will die. And being a mother who wants the best for my child, I believe them… which is why this whole evening is so agonizing for me.

I did the same amount of agonizing with Ellie, but still feel like Tessa is different. Because she is less interested in rolling the other way. Because her breathing is loud still. Because dang it, I’m not ready for her to make this decision for herself! Ha. Leave it to my daughter to ignore her mother and do as she pleases at the ripe old age of not-quite-four months. Karma.

Parenthood is not for the weak-hearted.

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Normalcy?? I hope not.

Well, we thoroughly sucked at this week.

This was the first week since before Tessa that both John and I have been working.  I’m sitting at my kitchen table, surveying the disaster that has been created by the tornado of our life.  Strewn across the surface of our table are the remnants of not one, not two, but three McDonalds Happy Meals… there are empty Chinese cartons, a Chili’s To Go bag, a couple of squeaky styrofoam boxes from our favorite sushi restaurant…  and I haven’t touched my weight watchers app in seven days (thanks for sending me the lovely reminders, Weight Watchers App.  No, I haven’t tracked my weight lately, I know.  I don’t even want to know where that number stands after this week).

I often measure the stress level of our week by the number of meals we eat as a family, at our table.  We shoot for five.  This week, we were at one.  I think.  Then again, that may have been last week.   

After a weekend full of way-past-your-bedtime events, Ellie was in a funk.  There were lots of tears and sulking by the door to our garage, waiting for Daddy to come home to save her from Lord knows what.  Me, I guess.  One day, she spent 45 minutes carrying on about how she had no toys anywhere and how she wasn’t going to play ever again.  One night, there was vomit.  That was awesome.

If you are an unmarried reader… my unsolicited advice to you is that you find the partner who will laugh through the 1 AM, 2 AM, 3 AM vomiting toddler/hungry infant extravaganza and will thank you for being awake with him (as if there were really a choice).

There were meetings that ran long, a  list of school events to supervise, two therapy sessions, several hours of crying toddler to survive, a house to clean…

I actually broke down and called for an estimate on how much it would cost to have my house cleaned by professionals.  Sooooo not in the budget.  

In any case, we have learned the importance this week of my monthly meal plan (which was not in place this week… hence, the struggle… or so I tell myself) and our shared iPhone calendar.  While I don’t think that we will ever not be busy, we will get better at the adjustment to two in the working world, two in daycare.

Right?

Before I forget to record them, there were some fabulous bright spots to our week.  And I mean fabulous.

1. Tessa took almost all of her feedings today in an upright position.  HOLY Guacamole!!!!  Yes, yes, yes, THIS is what we have been praying for most.  

2. Ellie took a bath with zero tears.  I haven’t written much about this (it’s a “coming soon” post), but suffice it to say that bathtime has been a terrible experience for quite some time and we are finally getting our little fish back.

3. Tessa figured out how to roll from back to belly today.  She’s been on her side and aaaaaaalmost over for a little bit, but she finally got her shoulder to cooperate.  I’m SO proud of her… and SO terrified to walk into her room and see her sleeping on her belly.  I’m not ready for that!

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The Diagnosis

I follow a group online called the Down Syndrome Diagnosis Network, which exists to support families when they have received a Down syndrome diagnosis.  While I have written extensively about Tessa’s Birth here, it’s worth dissecting the process of the actual diagnosis.  I promise I’ll be totally honest.

When John and I talk about family planning, I’ve always said that I want to “finish early.”  Actually, what I have said is something along the lines of “it’s so risky… waiting until I’m older… that’s why I’d really like to stop having kids before I’m 32.”

Foot. In. Mouth.

I told you I’d be honest.  And where did I get the number 32??

At Tessa’s 20 week ultrasound, our tech told us that the baby was the most wiggly baby she had ever measured.  This was my fourth ultrasound of the pregnancy.  Most of my friends have these sweet ultrasound pictures of their little one lying nicely across their belly, face up, sometimes sucking a thumb or waving hello.  Ours is a face, smushed up against the uterus wall as if to say HEY, DO YOU SEE ME IN HERE??  ‘CAUSE I’M ABOUT TO GIVE YOU THE SURPRISE OF YOUR LIFE!   Perhaps her insane movement is why no markers could be seen?  Or maybe not…

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In any case, I’m telling you about the diagnosis, aren’t I?

I feel like my husband is the best person to tell this story.  After all, he is the one who actually received the news, not I.  That is really how it went.  NICU was called to the delivery because of dropping blood pressure.  As she was delivered, John told me it was a girl and my jaw dropped to the floor.  She cried and it was beautiful.  As NICU examined her across the room and I continued the delivery process, they started talking about strong markers for Down syndrome and did we have prenatal testing?  The silence of the room was thick.  It was cramped with people and yet my husband and child were so far away… My nurse wanted to know if I knew and I was telling myself that this woman was surely mistaken because this would have been seen on my ultrasound.  Wouldn’t it?  People don’t just get a diagnosis like this.  Do they?  I’m not prepared.  Someone should have prepared me.  In any case, she was probably wrong.  My doctor (whom I adore) very quietly said to me “you know, who is to say they aren’t just as happy… even happier than we are?”  And I waited.

When they handed me Tessa,  not exactly sure what I would see, my shell-shocked husband attempted to explain her “strong markers” to me.

I didn’t see them.  It was only Tessa, my sweet girl.  In that moment, Down syndrome was everything and nothing to me at the same time.

Later in the afternoon, once Tessa was off in the NICU and John and I were alone in our room, the geneticist came in to tell me more about my girl.  She was not cold, nor was she discouraging or overwhelmingly positive either.  She took a very brief history.  Intrigued by my past miscarriages, she explained the different types of Down syndrome and asked about the genetic testing on the other babies (both had been “normal”).  She said something along the lines of “look, I’ve seen your baby.  She has it.  I’m as sure as I can be without seeing the test.  But I promise, we’ll call you as soon as we get the official results.”

Later in the NICU, I examined every little bit of my baby.  I didn’t get it.  Something about a line on the hand?  A flat nasal bridge?  Her neck was different?  But she looks just like Ellie!

John and I went back and forth about when and how to tell our families.  I insisted that we wait until we had official results.

You know, in case they were wrong.

And we waited.

Tessa was born on a Wednesday afternoon and the call came on Saturday morning.  I didn’t pick up the phone, though I knew who it was.  The results were in and she was positive for nondisjunction Trisomy 21, the most common (and random) type of Down syndrome.

I just didn’t see it.

I kept waiting to fall apart.  The moment never came for me.  It does for some.  For me, there was a lot of information and tests, then she was home and it was Christmas and New Years and on we went.

I still don’t see the Down syndrome in Tessa most of the time.  I still look at my little girl a lot and try to find what they tell me is true.  I still wonder if our tests got mixed up and they were wrong.  (And if they were wrong, are we going to get in trouble for all the Early Intervention that we have used??)  When I take her in public or show her picture to strangers, I wonder if people know.  I’m not in denial.  I know she has it.  Sometimes, I take her picture and I see it.  But mostly she’s just this beautiful, wiggly little thing.  She’s my girl.

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Will Run for Beer?

I am not a runner.

John participates every year in a half marathon at the end of August and it kind of makes me crazy.  I’m glad he takes the time out to keep himself healthy and moving, but the race at the end of the training costs money and I hate paying money so that he can do something that he could do for free.

But tonight, John found a cause.

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Here is his letter to our family and friends:

Hello Everyone,

I want to let you all know about a charity race I have decided to join.  This summer on July 20th I am running the Rock “n” Roll Chicago Half Marathon for the Ups for Downs Down syndrome foundation.  As many of you know, my daughter Tessa was born with Down syndrome earlier this year.  Since Tessa was born, Maggie and I are on a mission to help people see the ability in all people with Down syndrome and not just the disability.  Needless to say, I thought this race is one small way I can help the cause (and maybe lose a few pounds while I’m at it).  
 
How can you help?  Well, I’m glad you asked!  There are three ways you can help.  
 
1) Prayers, encouragement, and well wishes.  You can even go watch the race if you want! 
 
2) Financial support for the Ups for Downs Organization.  Think of it this way: Any small contribution you make (from $13.10 and up) is like paying to put me through 13 miles of running! It’s almost like getting back at me for being a smart aleck all these years by making me run for two hours and supporting a great cause at the same time!  Below is the website you can use to make donations if you are moved to do so.  
 
http://www.active.com/donate/ufdrocks/2014JLay
 
3) Join the team!  You may also sign up as a part of our running team (Team Tessa) and do some fundraising of your own.  I have a feeling this option will get the least positive response, I mean who would be crazy enough to run 13 consecutive miles? 🙂 I digress, but let me know if you want to run and I’ll give you some information. Just know that the sooner you sign up, the less expensive it will be and the more time you have to raise funds, so let me know sooner rather than later. 
 
I can’t tell you all how much Tessa has taught all of us in just a short time and she can’t even really do anything yet except smile!  Let’s help spread the love and start to change the way we think!  God’s blessings to all of you! 
 
John

Now there is a race that I can throw money at.  🙂

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Progress – Month 3

(Typing on an iPhone is still terrible. Would someone please tell my husband to stop goofing around on his Spring Break and fix the computer??) 🙂

Our marathon week of doctors and therapies left us with far fewer answers than we were hoping. As always, Tessa continues to progress, but we are still trying to get to the root of what might be making the feeding process so challenging for her.

Medical
Tessa is our little peanut, weighing in now at 11 lb 6 oz. It’s a good gain though, 2 pounds in a month. Overall she looks really great. She has been battling a cough for awhile, but it seems to be clearing up finally. Her clogged tear duct hasn’t resolved itself yet, but the idea of someone sticking a probe into a hole that tiny has me so freaked out that I’m massaging the heck out of her little gland every chance I get. So far, she’s pretty easygoing, so I can do this without much of a fight.

We also took Tessa to see an Ear/Nose/Throat (ENT) doctor for a variety of reasons, but mostly because she continues to make a gaspy, high-pitched squeak on a fairly regular basis. We had attributed this to the laryngomalacia (floppy vocal cords) that we believe she has, but want to be sure that she isn’t aspirating on her food when she squeaks. Unfortunately, the ENT was running late and we had to feed our child, which meant that he couldn’t stick the camera down her throat. Boo hoo. I wasn’t terribly disappointed to delay that experience!! He did notice that Tessa has some fluid in her ears and if it doesn’t resolve in a month with some nasonex, she’ll be having surgery to have tubes put into her ears. If she has the surgery, he’ll just do the scope at the same time. If not, I’ll have the joyful experience of trying to hold our squirmy worm still while he does it. Eek.

Physical and Developmental Therapy
The bobble head is still present, but Tessa is showing great improvement! She loves to look over my shoulder, so she practices holding her head up a lot. Just like Ellie, she loves to see what is going on in the world around her. We have gotten better at getting the arms to come to her center (midline), but it is still a battle. We have expanded our use of kinesio tape to be used not just on her abs, but also on her chest/pectoral muscles. It looks goofy, but it seems to be be working well to help her lift her head and chest up. Now that we are teaching her to use the correct muscles to roll (not the head and neck), she can get up onto her side pretty well, but does not flip. This might seem like she has regressed, but it’s actually much more important for her to use the right muscles! We also have a pair of “hip huggers” for Tessa to wear. They are tight pants with the legs sewn together (like a mermaid fin) so that her hips align better. Unfortunately, the wiggly legs have found a way to wiggle right out of the pants, so our PT is working on making a new pair that she can’t get out of!

Developmentally, we are getting lots of smiles and coos from our sweet girl. She has been very vocal for the past couple of weeks and I am loving it!!! While her absolute favorite is still the ceiling fan, she mostly prefers to look at people and looks for faces to match the voices that she hears. We are now working on getting her to track 180 degrees (follow an object all the way from left to right) and would like to see her show more interest in grabbing objects. The rough estimate is that she is about 30% delayed right now. Not huge!!

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On a positive note, I can get Tessa to eat about one ounce a day in an upright position. One ounce out of about 25 per day sounds terrible, but please understand that two weeks ago, just putting the bottle in her mouth while upright caused serious gagging. I’ll take the small victory.

I’ve been back to work for two days now. It was so nice to have such a warm welcome back from my students and coworkers. They were actually so nice that my perfect April Fool’s Day trick was a total flop!! I had planned to tell my classes that Tessa had a really bad day at day care on the first day and that I was going to take the rest of the year off to be with her. Every time I tried to work up the courage to joke with them, I couldn’t do it!!! It really is good to be back, but I do miss these girls (and guy!) while I’m bringin’ home the bacon…

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