In case you didn’t know… We got the results back from the virus panel to explain what horrific disease has caused this hospital experience. Turns out it’s a rhinovirus, AKA the common cold.
I’ll never be able to look at a snotty nosed kid on the playground with my child the same way ever again.
John says I shouldn’t swear on this blog. I’m not sure why… I’m not one to curse much in life anyway, but really, this week has earned a few choice words. I think you all understand if I call it sh***y, right? That’s a good compromise. 😉
We had a particularly unpleasant night with Ellie; one that involved a LOT of crying and smacks in the nose (from her to us!!) to avoid drops. We think they were accidental smacks… But she might have us all fooled.
Today I returned to work. We have been staying with my parents, as they live two minutes from Tessa’s hospital and we live 45 minutes away. So my usual 15-minute commute would instead be an hour. I was up, showered, ready. John wandered in with a scowl on his face.
Me: Rough night, man. Those drops are brutal.
Him: Yeah. Look at my eyes.
Me: You look exhausted! It’s only 5:30, go back to sleep!
Him: Maggie! Look. At. My. Eyes.
Me: S***.
Pink.
Cross another person off the list of helpers.
You know that feeling when someone sneezes on you and every tickle in your throat becomes an “oh my God, this is it, I’m getting the bug!” reaction? That has been me. All. Day. My eyes, which are white as white can be, albeit a little dry from the hospital air, literally tingle. It’s coming for me…
At least Tessa has had a good day. We’ve been lowered to a high-flow cannula rather than the Bubble CPAP. She took four ounces in a bottle and had a nice little bath. I’m here with her now, though I’m not touching her for fear of spreading The Disease. She is a sweet little peanut!!
We came in this morning to an angry baby.
Tessa basically has two cries – a weak, pitiful, won’t-you-please-make-me-happy sob and a full on, all-Hell-has-broken-loose scream. We were greeted with the latter today.
When we saw her, she stopped, smiled, and then started up again. The good news is that because of this (and because our room is directly outside of the nurse’s station and everyone was tired of enjoying her anger) they let us hold her.
We also got to feed her a bottle because we thought she was sick of having an empty tummy. Just two ounces (and two great burps!) and she was exhausted, but content.
A little bit of normalcy. 🙂
This morning, they set her oxygen back up to 30%. The goal is to get it down to 21% on the CPAP so that we can start weaning from it and get her onto the high-flow oxygen cannula. There are three levels of oxygen input – four if you include total intubation – and CPAP is the highest that we are dealing with. It forces the lungs open more than the other types. Since she’s working so hard to breathe, the extra force of the CPAP is needed for now, but the oxygen need going up a little is a minor setback. The nurse says it’s pretty insignificant and we’re trying to see it that way as well. As the doctor reminded us today, this is just going to take time. A week? Maybe longer? We don’t know.
Ellie’s pink eye is improving. She hates the drops. Even my assurances that Doc McStuffins herself called me today to recommend them to help her feel better weren’t helpful. My next step is to put on a Doc McStuffins costume and convince her that way. Not really… But sometimes desperate times call for desperate measures. 🙂
All of Tessa’s therapies are in full swing now, so here is an update on where she is and what we’re working on:
Developmental Therapy
We are working on bonding as a family and smiling. I think the bonding is going well… we kind of like her… a lot. Plus, she’s a good sleeper, which definitely helps her cause. 😉 Tessa is doing some social smiling, though not a ton. More than anything, we would like Tessa to smile at Ellie. It will come… it may come faster if Ellie would stop undressing her like a doll every time I turn around.
Physical Therapy
We are still hearing that Tessa is so strong!! The nurses called her “the swimmer” in the NICU because her arms and legs were always flailing. Now we’re trying to help her coordinate those movements a little more. It sounds odd, but she doesn’t know that her arms and legs are attached to her, so we try to encourage her to bring those parts in toward the body, like this:
Rather than her preferred relaxed position:
We do a lot of tummy time and also work on supporting her in a sitting position to gain more control of her neck. When holding her, we keep her legs from going “frog legged” as often as we can. Thankfully, she is loving sitting upright by Mom and Dad’s shoulders, so she gets a good workout in that way! She also throws her head back and extends her back a lot. They call it “extension” and while it is building strength, it’s not so great for her posture and physical development long-term. Again, trying to get her to bring everything midline (center) will help. We usually lay her on the floor between two rolled towels to help with this.
Speech Therapy
While Tessa is still eating laying down, we have much less gulping than before and she hasn’t choked on her food in quite some time. John went rogue and tried to feed her sitting upright, but she just wasn’t ready. Patience is very challenging, but I know she won’t eat on her side forever!! On a positive note, Tessa has found her hands and likes to chew on her thumb. I realize that this sounds strange, but different textures in and near the mouth are important! Also, to stimulate muscles, when we clean Tessa’s face, we always wipe toward the lips rather than away. Tummy time and sitting upright are helping her build up strength to eat in a typical manner. It’s so amazing how everything is related!
We won’t have an official re-evaluation until Tessa is 6 months and I’m curious to see where she is at by then. Babies change so much in their first year! This week, I packed away the newborn clothes (they lasted a lot longer with Tessa than they did with Ellie!). It goes so fast.
Tessa “stuck” in her towels. She doesn’t like it so much, but it’s good for her. 🙂
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?
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. 🙂
Before Tessa was born, I was often asked how Ellie felt about having a baby. She’s two, so the reality of what a sibling would do to the family dynamic is not something that she had any way of comprehending, but she made one thought very clear: we were to bring home a baby girl, or the baby would not be welcome in our family.
Thank God that we got the right gender!!
Ellie adores our baby…. probably too much at times. To her, Tessa is just the cutest little bean and requires about 47,000 kisses per hour. She talks to her in a ridiculous voice, holds her little hands… May we all remember to treat her as “normally” as Ellie does!!!
I do think often about their future together. It’s probably the one area that actually causes me a substantial amount of anxiety. I never want to parent Ellie less, expect more of her, or put too much on her shoulders. However, I can’t help but pray that this little toddler will grow into a champion for her sister. I’m not naive enough to think that Tessa will never have to deal with teasing or feeling left out… nor do I really expect that Ellie will always be the one to come to her rescue when times are tough. However, when I picked Ellie up from her daycare on Friday, I couldn’t help but smile at the exchange I heard between my eldest and another little girl:
Girl: Hi Autumn!! (The name of another little baby)
Ellie, very upset: No! That is Tessa! Do NOT call her Autumn, that is not her NAME!!! She is Tessa!
You go girl.
…. Of course, tummy time can only be mildly successful when you enjoy sleeping on your belly…
So Tessa qualifies for something called Early Intervention (EI) because of her diagnosis of Down Syndrome. It covers a variety of therapies from birth to age three that will help her develop at an appropriate pace. At the age of three, when EI is “done,” Tessa will start school. She will not wait until she is five like a “typical” child.
Yesterday, we had our EI evaluation to get a better idea of what Tessa’s strengths and weaknesses are. Based on her evaluation, she will receive services to help her grow. More on that later. For now, here is what we know about our little girl:
1. She is strong and active! Babies with DS tend to have low muscle tone. This doesn’t refer to the strength of the muscle, but rather how much energy it takes to get the muscles moving. In terms of her reflexes and general movement, she scored in the two-month-old range! And as one therapist put it, “wiggly babies seem to do even better.” After hearing that, I flashed back to the constant kicks and rolls in my belly during pregnancy… This girl can move!
2. Tessa’s neck strength needs some work. All babies are born with bobble heads, but Tessa is going to need some extra help here. Tummy time is in order!
3. With modifications, Tessa is a good eater. When eating, she currently lies on her side perpendicular to the person feeding her in what is called a “sidelying” position (creative name, I know). She uses a “preemie” nipple on her bottle. We will continue to work on getting her to eat “normally,” upright, with a standard bottle. We are also supposed to encourage her to use a pacifier and to put her fingers and other objects (toys, teething rings) in her mouth.
4. Socially and emotionally, she is content, a good sleeper, easily calmed, and not easily rattled by things like her older sister shoving an electric toothbrush into her mouth. However, it is tricky for her to do too many “things” at one time, so we have to isolate the skills we want to work on. For example, when we work on vision/eye contact, we hold her limbs still to keep her from using too much energy on the wrong body part. 🙂
We are happy to report that the overall consensus among the therapists is that generally, we aren’t catching Tessa up to her peers, but rather maintaining her progress and moving forward. This is great news! From here, Tessa will have physical therapy once a week, speech (for feeding) twice a month, and she will see the developmental therapist once a month. I can’t believe how much support and help we have gotten with Tessa so far. We have very high hopes for her future and know that there is no limit to what she will be able to do in her life!
We learned at Tessa’s birth that she has Down Syndrome. She was born a little early, at 37 weeks and 3 days. Her birth day was the most life-changing, whirlwind of a day that I’ve lived through in my 28.5 years.
When we tell people that Tessa has Down Syndrome, people are unsure how to react. I mean it in the kindest way possible when I say that it is interesting to watch people search for the right reaction (which is why we prefer to share that information through text or email). If you are ever in that situation, a generally good response is “congratulations!” (following with a “what does that mean?” or “how can I help?” is also appropriate). We celebrate the life entrusted to us to care for and raise every day and we hope our family and friends will do the same.
We are often asked if we knew before she was born. The answer is no. John and I don’t live in hypotheticals when we can avoid it – and for us, the genetic screenings create a lot of hypotheticals that we don’t want to sort through unless necessary. Tessa didn’t show any markers on her ultrasounds, I’m not of “advanced maternal age.” We’ve simply been blessed with a sweet girl to raise who happens to have some extra chromosomes. We have heard that it is common for couples to abort their pregnancies when they learn that their child has Down Syndrome. Hearing that rattles me – this beautiful baby has so much to teach us about life; I can’t imagine not bringing her into our home. And, for the record, if God blesses us with another baby in the future, we still won’t do any tests.
Today Tessa began her Early Intervention. In my next writing, I’ll share information about what DS looks like in Tessa and what is in store for her over the coming months.
Yo soy La Lay 