Yo soy La Lay

Sickie

by Maggie

I need to write an update on Tessa, but truth be told, I haven’t spent a lot of time with her in the past couple of days. Instead, I’ve taken care of this little sickie:

Ellie doesn’t get sick often. As a matter of fact, this is the first time she’s been sick at all since she was about 9 months old!!! However, when she does come down with something, she goes all out. She’s just like her daddy in this way. The throwing up, the chills, the crying… her fevers are always in the mid-to-upper 103 degree range and she just acts miserable (and I’m sure she really is!). New to this illness was Ellie’s ability to use words to tell us all about her pain and discomfort. She had lots to say!! So. Much. Whining. My particular favorite was an exchange that we had toward the end of her sickness, when she was absolutely desperate to show some love to Tessa:

Ellie: Can I please kiss Tessa now?!

Me: Nope, sorry. We have to wait until you are alllllll better.

Ellie: Ohhhhh. Because I throwed up?

Me: Yep.

Ellie: And because I have worms?

I can assure you, there were no worms, but rather, germs. Thankfully, it only took a couple of days for Ellie to return to normal. The “tummy bake” and “worms” have left, John and Tessa are allowed out of quarantine, and only one of four family members was afflicted with this lovely bug.

(It’s worth noting that Ellie learned VERY quickly that she will be pampered when sick. After bursting through the door yesterday afternoon, laughing and singing, she was asked to pick up some toys. She proceeded to tell us that she really “needed a rest,” then laid down on the couch, closed her eyes, and asked for some sprite for her tummy bake. Yeah, right.)

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My new friends

by Maggie

I have spent my afternoon trying to infiltrate the Down syndrome community. There is no secret password, no special knock. It’s not a closed community, nor is it unfriendly or unwelcoming. But it is foreign to me. The vocabulary is new, the discussions, different. It’s full of love, laughter, frustration, hope, and it is somewhere that I now belong. I’m just not sure how.

We have previously been contacted by Ann, one of the family support coordinators from NADS (National Association of Down Syndrome… go ahead, chuckle at the acronym. We always do!). She has called me a few times and each time, I told her I was still processing and not sure what to talk to her about or what we would need as a family. A few days ago, I had decided that I was ready, that it was time to reach out to other people who are navigating through this experience as we are. So I put “email Ann” on my list of things to do… at the bottom… and then I never got around to it. Putting it off? Still not sure what to say? Just very busy? I’m not sure.

Today, out of the blue, she called me! Thank you, God! She sent me lots of information about parent groups and other activities to consider. We have lots of support from family and friends… but sometimes it can feel like I’m on an island, trying to navigate the challenges of Tessa’s world! The ball is in our court now.

Sometimes, I feel a little “late to the party” when it comes to Down syndrome, or maybe just like an outsider still. I have been looking through and following blogs started by families with little boys and girls like Tessa… families who are farther on their journey than we are, or who had a prenatal diagnosis and “know more” before their babies are born than we know two months into Tessa’s life. I have shied away from online communities because of the drama and weird “trolls”, but I’ve found a home reading the stories of those few that I have encountered in the blogging world. And soon, we will venture out to a Bowl-A-Thon or a conference or a playgroup and I’ll start to feel more like I am a part of our new community. Soon.

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Mom Guilt

by Maggie

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

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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Happy Valentine’s Day!

by Maggie

I adore my little girls… but today isn’t about them. So humor me here while I take 5 minutes to pay homage to my partner in crime (in pictures):

(thanks, http://www.snotm.com/ 🙂

In our childfree days:

We laugh, a LOT.

He’s a wonderful, supportive, loving, helpful, fun, funny, kind, and caring husband and father… and I am thankful to have him in the trenches with me.

Love you, Jefe!!

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Pity

by Maggie

Tessa had her first eye doctor appointment yesterday! There are a variety of eye issues that kids with DS are more likely to have. Most commonly, we’re talking about nearsightedness, but they also check for glaucoma and cataracts, cross-eyes, and clogged tear ducts. Clogged ducts are common in all newborns!! Tessa has one, as did Ellie, but she passed the rest of her exam with flying colors.

As a part of the exam, Tessa had her eyes dilated. Because of the weak dosage used on little babies, we had a considerable wait before she could be seen. The eye doctor’s office has a “special” waiting room for their children (though I wonder if they just keep us separate to keep the other patients less cranky!). Another mother in the room was holding a little boy who looked about 6 months old and she struck up a conversation with me. This seems to happen to me a lot… I know the life stories of a lot of strangers and Gina was ready to tell me hers, too!!

As the conversation continued, she told me about her little boy, Robby. Remember that I thought he looked about 6 months? Well, in actuality, he was 14 months. Robby had been born without a left kidney, without a left lung, and with severe heart defects, all of which had not been diagnosed prenatally. When she brought her concerns to the doctors three weeks after his birth, she had been dismissed and it took considerable effort for him to receive any care.

(As a side note, this story was so unbelievable to me that I came home and googled if someone could survive with one lung. It is possible. In fact, the Pope only has one lung!)

Robby takes all his nutrition through a feeding tube, has had heart surgery and multiple hospital stays. She told me about how he is now terrified of doctors, how he can’t sleep more than an hour at a time, how she feels like she is neglecting her five other children… my heart ached for this woman!

As the conversation eventually turned, Gina wanted to know why I was sitting in an eye doctor office with a newborn baby. Not thinking much of it, I just told her that Tessa has Down syndrome and needed to be checked to make sure her eyes were working.

I will never forget the look on this woman’s face. She looked so sad!!!!! And I was tongue-tied. How to respond?? I’ve blogged about this before – that this is not a sad event for us, that we don’t feel hurt or lost… maybe a little confused or overwhelmed at times, but never sad!! And yet this woman, with the weight of the world on her shoulders, was feeling sad for me. How does one communicate this joy that we feel to a stranger? So I just did what any other new parent would do…. I stammered through some kind of weak response and then pretended that I had just received a text message and excused myself from the conversation.

If you’re waiting for me to say something like “just kidding! I was an advocate for Tessa and others with Down Syndrome!” you’ll be disappointed to learn that I literally did pretend to get a message. And today, I find myself trying to decide how I will approach people with this reaction in my future. The fact that in some areas of the country, 80-92% of babies prenatally diagnosed with DS are aborted weighs heavily on my heart. How can I show others what a blessing this will be??

As Gina left the office with her son, she whispered “good luck” to me and gave me a look that said “I am so sorry for you.” She meant no harm by this, I am sure, and her family is certainly in my prayers today. But “luck” isn’t what my family needs. Support is a better word, maybe, and the countless messages of love, hope, and encouragement that we have received from family and friends have made it abundantly clear that we are not lacking. We have a community behind us!! My hope is that Tessa’s community will be touched in such a way that people learn to see all babies as blessings in the lives of their families. Just look at this smile!! How can you not adore it?!

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Snorty McSnorterson

by Maggie

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. 🙂

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Matters of the Heart

by Maggie

We’ve come a long way from here:

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:

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

by Maggie

(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.) 🙂

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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Tessa’s Laws

by Maggie

So how cute is this little peanut??

Seriously, how can you not adore those ridiculous cheeks??? It’s amazing that such a cute little bug can cause so much trouble!! Don’t believe me? Let me tell you about what I’ve come to call “Tessa’s Laws.” You have heard of Murphy, right? You know, anything that can go wrong, will go wrong. Well, Tessa has her own laws…

1. If you prepare a meal, I will develop an insatiable need to eat as soon as you sit down to eat it. Especially if it’s a hot meal or a cup of coffee.

2. If you change my diaper, I will poop in the clean one immediately.

3. If you put me on my belly to practice tummy time, I will roll over.

4. If you take a shower and get dressed, I will spit up on you. And I will always, always poop, pee, or spit up on your favorite dark jeans. You know, the only ones that fit right since you had me? Yup, they are my favorite ones.

5. If you take me in public, I will need to eat. Don’t even think about the paci. I’m not interested.

6. I will stay awake all day long and require your undivided attention unless you take me to Mimi’s house. Then I will sleep all day.

It’s a good thing she is so cute!!

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Wait Time

by Maggie

Wait Time: The amount of time a teacher gives a student to show a skill before providing support.

Many new teachers struggle with wait time in their classrooms. Let’s face it, when a student is slow to answer a question, it’s awkward. You’ve usually got one or two kids waving their hands around to make sure you know they understand, the kid who you are waiting on starts to feel uncomfortable… it’s tricky. We grow impatient quickly, often “rescuing” our student too soon.

(Of course, in my early days, just because I’m different, I gave too much wait time instead of too little. In one of the videos of my teaching from my Secondary Methods course, I asked John a question (yes, my now-husband) and then gave considerable wait time hoping for a response. And when I say “considerable,” I mean a painfully uncomfortable amount of time that still makes me blush and cringe when I think about it. And of course, he still remembers this lovely event as well. Ugh. I need to get over it.)

Wait time with Tessa is different. Clearly, she isn’t answering questions, but she’s learning new skills and she has to demonstrate them to me. As I have mentioned, we’re working on the Tummy Time skill (aka, lifting the bowling ball of a head off the ever-so-soft and cozy play mat) because she’s a little behind. I always struggle to decide if she is done, too worn out to lift her head anymore. Ellie got angry at the end of her Tummy Time. Tessa, while a little cranky, seems to be an easy-going, “whatever you want, Mom” kind of child. But I digress… So I play this mind game each time we do Tessa’s exercises: Is she done? Can she do more? Should I turn her over? If I turn her over, am I giving up? And what if I don’t turn her over? And if I do, will she get a flat head? Ugh. Luckily, Tessa has learned her own way of telling me that she is done.

She rolls over. Um, what?? Rolls over??? At six weeks?? And this is not a one-time occurrence, my friends. When she is tired of being on her belly, she just flips. This from the child who isn’t supposed to be able to walk until she is closer to two than one. And yet, here she is, showing us a skill that usually appears at the age of 4 or 5 months, maybe even 6 or later. Needless to say, we are impressed.

On the other side of wait time comes my impatience to feed Tessa like a normal baby. We have not made any progress since coming home from the NICU on Christmas Eve. Well, that’s not totally true. When we left, she would take 45 minutes to eat two ounces of milk or formula and we had to pace her, tipping the bottle when she forgot to stop and breathe. Now, she paces herself pretty well and often takes up to four ounces in about half an hour. So that’s progress. But on Friday, we ventured out to Target and it sucked. There’s just no other way to put it. She got hungry and I couldn’t feed her like I would with Ellie. So while Tessa has her exercises to build strength, so do I. And while my “exercises” are emotional rather than physical, they remind me that Tessa and I are in this together. She may require a little more wait time than the average child, but we will move forward… together.

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Yo soy La Lay

adventures in family, faith, and Down syndrome

Sickie

My new friends

Mom Guilt

Happy Valentine’s Day!

Pity

Snorty McSnorterson

Matters of the Heart

Tessa’s Birth Day

Tessa’s Laws

Wait Time

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