My {1} Month Old with Down Syndrome 

Well, we’ve officially survived   o n e  WHOLE  m o n t h   with Kara. We’re still standing and she’s still breathing!

These last four weeks have been so eventful and sleepless, it feels more like one long, strung out day. On the other hand, the hours have slipped right past me and I can’t believe that she’s already a month old! One thing is for sure, keeping up with her is going to be an adventure! I was just starting to adjust to pregnancy when the tables turned. Now we’re starting all over again, but this time we’re trying to figure out this whole world of parenting.

Kara is quite the pistol. She is always movin’ & groovin’. She likes to beat her fists against her chest and kick her little legs as hard as she can. She can hold her head up for a few seconds at a time and she even rolled herself onto her side in the middle of the night! She seems to be very strong willed as well. Even though she doesn’t cry a whole lot, she is very vocal. She absolutely refuses to sit in a wet diaper and she won’t back down until it’s changed. She will fuss and whimper until she gets a clean diaper then she immediately fills it! We’re going through at least 2-3 diapers every time we change our little diva!

She loves to be rocked, bounced, swayed, swung, and patted. Anything goes. She loves music and will usually close her eyes when Mom or Dad starts singing. There is nothing better than being able to soothe your baby with just the sound of your voice. She’s also quite the cuddle monster and loves to be wrapped up in ball, whether its in your arms, in her lounger pillow, or with her protective puppy brothers 🙂

Even if its with weary, sleep deprived eyes, I love to watch how she changes every day. Her hair is starting to lighten and she’s looking more and more like Dad. Her arms and legs have a little pudge on them now since she is gaining weight like crazy! Most of her newborn clothes are still a little bit big, but she is slowly starting to fill them out a little better. I can’t wait until all of her headbands fit!

Unfortunately, time is flying and she will be too big for her newborn clothes before too long. I am doing my best to be present and live in the moment. When I start to think about the future too much, I take a deep breath and focus on her. It doesn’t matter if she’s sleeping soundly or has wide, alert eyes in the wee hours of the morning. I want to soak it all in. It’s hard to believe that we’ve already experienced so many firsts and I don’t want to miss a single thing.

A large part of me feels like we’re just playing a big, elaborate game. How long can we keep the baby alive?! The object of the game is to establish a routine. Then you must make it through that routine before suddenly adjusting to a new one overnight. All the while, you’re overcoming lots of side-challenges that are thrown at you like handling reflux or making it to appointments on time. It’s like a game and it doesn’t even seem real. There’s no way that I’m a mom…On the other hand, nothing has ever felt more natural. Within the first week, I was carrying her around like a football because it was the best way to soothe her and make her bottle at the same time. All she has to do is look up at me and I know exactly what to do and what to say. My purpose in life has never been more clear. Being a mom is quite strange in that sense. Some days I feel like I’ve been doing it my whole life.

The first time I was fully aware of my mom status was on a Saturday, right before guests arrived. Jacob was out fishing and I was determined to do an amazing job at getting Kara and myself ready and presentable. We were trucking right along. We were both clean and fed. I had changed her and since she was still a bit fussy, I had decided to burp her on my shoulder to see if that comforted her. And it did! My plan worked except that it entailed her vomiting all over herself…and me…and the couch. I had pukey milk running down my back and in my hair. What now?!

I felt disgusting. We were both covered in milk and Kara was now hungry again. I had guests coming in an hour. I took a step back, pictured what I must look like from the outside and began to laugh out loud. So this is motherhood! I couldn’t set her down and go shower. I couldn’t tell her to stop crying. I had to take it one task at a time. I calmed her, changed her, waited until she was happy, and then took a small window of opportunity to stick my hair underneath the bathroom faucet.

A wise friend recently told me “A good parent is someone who does the best that they can, in that moment, with what they have.” These comforting words have helped me manage chaotic situations. I was proud of this mom moment 🙂

We’ve also had a chance to fully embrace the fear that accompanies parenthood. As I’m sure most new parents do, we kicked off Kara’s homecoming with a combination of panic, paranoia and desperation. I was still delirious from the pain medication and was pathetically bedridden for the first couple of nights. Poor Jacob was under a lot of pressure, but dove head first into “dad mode.” It’s crazy how much work a tiny little human can create. Feeding, burping, changing, rocking. Being on our own was confusing. We felt out of place without the support of the hospital staff.

Our first call to the pediatrician took place within two hours of being home. Kara started to choke a bit after a feeding. This is a pretty normal thing for a baby to do, except for the fact that she couldn’t catch her breath and her lips started to turn blue. We frantically tried to calm her and after what seemed like a lifetime, she fell asleep, returning to her rosy coloring. With the hole in her heart, it isn’t unlikely that when she got upset, blood was forced the wrong way. We confirmed later that this is normal for her condition and she was never in any real danger. Regardless, we spent the rest of the night with one eye open.

This “heart scare” was the event that kicked off our string of middle-of-the-night calls to our pediatrician. I’m sure the answering service had our information memorized that first week. Having a newborn is terrifying. Everything alarmed us. It is all so new to us and we don’t know what to expect. On top of it all, we don’t know the difference between a “typical” baby reaction and what might be caused by low muscle tone or her heart defect. I don’t know how many times we hovered over her, wondering if her shallow breathing was completely normal or if her heart was being over worked. Turns out, she’s pretty normal (and so is our hyper vigilance as first time parents).

We’ve become much more relaxed since that first week, and even more so since our visit to the doctor to check out her heart. During pregnancy, Kara had three fetal echocardiograms. Each one showed a pretty common heart defect found amongst babies with Down syndrome that I had talked about in a previous post.

The last fetal echo was done a week before she was born and they had suspected a second, smaller hole between the bottom two ventricles of her heart. This hole would likely cause her to show symptoms (labored breathing, trouble feeding, etc.) and would need surgery sooner than we were originally told. This hole was confirmed after her birth so we were sitting on pins and needles as we waited for this appointment.

At three weeks old, Kara got to meet her cardiologist for the first time in person and she did so well! She quietly tolerated her hour long echo, making us very proud.
Better yet, the echo showed that the second hole was almost non-existent and the doctor thinks that it must be closing up on its own! She will still need surgery to correct the AV Canal defect, but they don’t expect her to show any symptoms and we can push the surgery out 24-36 months of age! This was fantastic news and we left with HUGE smiles on our faces!

In just one month, we’ve already made it through these things. We have surpassed things like her first bath, her first babysitter, her first tantrum, and her first blowout diaper. We’ve had the chance to laugh at ourselves, cry over spilled milk, forget to shower, and lose track of the days. 

I know it hasn’t been long, but I feel like she has taught me so much already. I am more patient than I’ve ever been in my life. I am humbled when I let her take over my world. I am grateful beyond words when I look at her. There is nothing more important than her. How can two imperfect people create something so flawless and innocent? Even though being a mom is tough sometimes, the good moments far outweigh the bad. My life is so vastly different and I am a better, stronger person because of her.  


5 thoughts on “My {1} Month Old with Down Syndrome 

  1. great from the heart blog as usual granddaughter,i must add kara sounds so much like a few pistols in the family,my mother called me a pistol and i’ve been known to call you one,that’s fine pistols most usually come out ahead, from one pistol to the other, much love, granny


  2. I am really enjoying your blog! I love your energetic and positive attitude. I don’t know much about down syndrome so your posts are also educational. Thank you for sharing your story! ^_^


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