Yo soy La Lay

adventures in family, faith, and Down syndrome

Mom Guilt

Both my girls had fabulous heads of hair at birth. See exhibit A (Ellie) and B (Tessa):

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It took me until Ellie was 2 to get the courage to even give her a trim! When your little one has hair to her shoulders before she can walk, it’s quite the accomplishment!

However, my pride in the hair of my children is also why I’m feeling horribly guilty about the latest development in Tessa’s growth.

She has a bald spot.

I realize that in the grand scheme of things, this is quite possibly the dumbest thing in the world that I could concern myself with. I mean, really? Most babies lose all their newborn hair… and that’s if they born with any in the first place! And yet, here I am, practically in tears over this tiny little spot on the back of Tessa’s head that has lost its hair.

Up until this point, I’ve had exactly two times in my 2.5 years as a mother where I felt guilt. The first was when we had to take Ellie to the emergency room from a 105 degree fever. I was at Parent Teacher Conferences and was not there to take her or to hold her hand. The second was on December 23, after a day struggling to meet the needs of both my newborn and my big girl. I hadn’t put Ellie to sleep in days, we didn’t get to have our ritual Christmas light-viewing drive, I had a miserable day trying to feed Tessa, and I thought that she wouldn’t be home in time for Christmas.

Outside of those incidents, I’m not one who has struggled a lot with guilt. And yet, here I am, focused squarely on a tiny little bald spot. To me, though, that bald spot represents all the times that I have washed the dishes rather than giving Tessa her Tummy Time. It’s the extra five minutes I spent in the shower while she slept in her bouncy seat. And I know it’s impossible for both of us to work on her “skills” at every moment, but I wish that I didn’t have to see the
physical evidence of my prioritizing on the back of her head.

Then again, the front is pretty epic, isn’t it?

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Snorty McSnorterson

Did you know that Tessa sleeps in our bedroom closet?

Someday, Tessa will move into her crib in the room that she and Ellie will share. I think they will be *great* roomies… However, before she was born, John and I agreed that it would be best for everyone if Ellie didn’t have to endure the sleepless nights like the rest of us. So Tess started in our very small “office” (which is actually just part of our upstairs hallway). When she woke up Ellie one night and no one in the house slept (Worst. Night. Ever.), we moved her to the only place in our house that we had room: the master bathroom.

We felt kind of awkward explaining to our original EI coordinator that our brand new baby was sleeping in a bathroom. She didn’t seem to be phased by it, but we were and that very evening, we cleared out some space in our closet and she’s been there ever since.

So why doesn’t she just sleep in our room? One word (and it’s a doozy): Laryngomalacia.

Say it with me: La ring o malaysia.

If you listen to Tessa breathe in some positions (mostly laying flat on her back), she sounds like she is congested. We spent a few weeks trying to “treat” her congestion with saline drops, a humidifier, every kind of nasal aspirator available on the market… nothing worked. The speech therapist who did Tessa’s initial evaluation told us about Laryngomalacia. It is essentially loose cartilage that causes some airway obstruction when a child breathes. It’s pretty common, and it will most likely go away on its own before she turns one. So if you have the joy of spending time with our sweet girl, don’t worry, it’s not contagious, she’s just a little floppy on the inside. ūüôā

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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. ¬†ūüėČ 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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Tessa’s Birth Day

(This is a long story, but I want Tessa to know all about how she came to us. My apologies in advance.)

I have mentally replayed the day that Tessa was born a thousand times in my head since she joined us… I’ve been asked about it by countless doctors, nurses, therapists, family members, friends… my Birth Day story always starts the same: Tessa came into this world like a whirlwind and by the end of the day, I had no clue what just happened to me.

You have to understand that Ellie took her sweet time joining our family. She came three days late, my labor pains started 36 hours before she graced us with her presence. We needed her to come on time because my brother and his wife were getting married a couple of weeks after her due date and I was desperate to go to their wedding. Ellie was born on the date that I had set as my mental deadline after which I would not make the trip with the rest of the family. I actually asked one of my OBs if he thought I had any chance of going early with Tessa and he told me that given my good health and the baby’s, I could pretty much count on being pregnant until my due date, plus or minus three days.

I was mentally prepared for the long wait. I was prepared to be a very uncomfortable 39 weeks pregnant at Christmas. I was prepared to spend New Years Eve chewing Tums and drinking sparkling grape juice. John was counting on having our Winter Break to prepare the house for Baby. When Ellie was born, my home was spotless. I had all the washcloths lined up in the bathroom, groceries in the cabinets, drawers were stocked with little tiny diapers, all of the clothes we had for her were washed and neatly folded in the drawer…

I cannot comment on the state of my home just prior to Tessa’s birth. If I did, well, I’m pretty sure the Health Department would be at my door. It was that bad.

At my 37 week appointment, the evening before I had Tessa, I joked with my OB that I was just hoping that Baby would come before the new year so that we would be able to deduct her on our taxes. Little did I know that in less than 24 hours, we would meet our newest family member.

John and I went to dinner. I at a LOT of spicy nachos. At 3:30 am, I woke up a little bit and thought to myself, “oh man, Mags, you definitely overdid the jalapenos last night!” One hour later, my indigestion was coming at regular intervals and I had one of those Hollywood moments where I turned to John and said “Honey, it’s time. I’m in labor!”

His response was, no joke, “you can’t do this today, I have to give a test.”

When I not-quite-so-politely told him where he could shove his stupid test, he agreed that I could have the baby today as long as he could go into work and “set things up.” And he left.

(In his defense, he really does feel badly about how he handled that morning and has apologized profusely. But it needs to be documented, nonetheless.) ūüôā

When he finally arrived home, contractions were coming hard and fast and I needed to get my butt to the hospital. As he slowly packed his bag, I begged him to hurry up and wake up Ellie. He told me he was waiting until the last minute to get her up. When I yelled that it was the last minute about 30 minutes ago, something finally clicked in his brain and we were moving.

The drive to the hospital is 40 minutes on a clear day and we were in traffic. I recall that I insisted that at stoplights, John should not stop next to any drivers because I didn’t want people to be freaked out by my labor. There was Christmas music playing, Ellie was singing “Oh Susannah” in the backseat, pausing only to giggle and repeat my yelping through contractions.

8:30

We got to the hospital and got to triage, I told the nurse I was definitely ready for my epidural. While I’m sure it’s very empowering to have a baby naturally, I am all about modern medicine. There was a wait, I was checked, I got moved to a room.

9:30

I got my epidural. Hallelujah.

10:45

My OB came in to check me and I was at 6 cm. Yippee! I was counting on an hour or so per centimeter. I called my mom to ask her to come be with me while I labored, started checking my work email, chatted with the nurse.

11:15

OB comes back to check me one more time before he leaves and another doctor would be on call to deliver me.

Scratch that, I’m complete. Time to push.

But wait, I’m writing an email! John hasn’t eaten his sandwich! I’m not ready!!

From there, it’s a blur.

11:30 AM

Someone’s blood pressure was dropping (don’t know if it was me or Baby), NICU was called, I got oxygen, they used a vacuum to get Baby out, two pushes and then we had a baby. The nurse asks John to tell me if it’s a boy or girl and it took him what felt like eternity to tell me that it was another girl. He told me later that her cord was wrapped around her.

11:35

I’m dealing with the pleasantries of post-birth and John is with our beautiful girl as they check her, weigh her, give her the Apgar rating (don’t ask me what it was, I have no clue). I hear the NICU nurse practitioner say …Down Syndrome… strong markers… the room gets quiet and my labor nurse looked and me and quietly asked “did you know?” I just shook my head and tried to come up with a question to ask, tried to plan what would happen next. Then I was holding my little girl and the nurse practitioner started talking about monitoring in the NICU. Tessa needed an echo cardiogram to check her heart, she needed some tests to confirm the Down syndrome, she would be there for at least 24 hours. We held her for a couple hours and off she went to the NICU and off we went to the Mother Baby Unit.

So that’s how Tessa came into the world. From there, we saw social workers and geneticists, neonatologists, cardiologists, lactation consultants… there were lots of people. We had the most positive experience in the NICU that a person can have really. It was hell being separated from my new baby and my big girl at home. We had the most amazing nurse, Theresa (more about that later) to help us at the NICU and our family and friends at home… and we got through it. And now here we are. Home, comfortable, happy, healthy, and loving life as a family of four.

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