Hi! This post has been one that I’ve been adding to for some time. I sit down and write a little bit at a time when thoughts come to me (and when I’m not holding Mars) and I feel like it’s done! It’s not perfect, but it is finally something that I’m comfortable sharing with you here in this space. I know that I’ve been eerily silent on the blog for months. After Mara’s birth, life became “Hectic Newborn Life” where we were just fighting to keep our heads above water. That was September, October, and a little bit of November. And then Mara got really sick back in December, and again, I was taken away from work. Which I didn’t mind, because my children are my first priority, but I hated not being able to share why I was away for so long. And at the same time, I wasn’t ready to share all that we were experiencing since Mara’s arrival. It was a constant ebb and flow of exhaustion, emotion, loss of sanity, and complete love for my new baby girl.
After a rocky start to the new year, I’ve finally found my footing and feel like I can share all about Mars bars. How she came. What she’s like. What she’s been dealing with. And how she’s overcoming it. And also, how ridiculously cute she is! I’ve shared bits here and there on Instagram so if you’ve kept up over there, you can finally fill in all the blanks! Hunker down, y’all! This is a bit of a short story.
Back in September, I shared this post with details all about the pregnancy. It was my sort of “last words” before labor (I wrote it two days before she came!). The pregnancy was tough, but I was prepared for what was ahead. At least I thought I was prepared for what was ahead.
We were supposed to be induced the morning she was born, but we were called off as too many walk-ins had come in the night before and there was no room for me at the time I was scheduled. This basically put me into RPWM – Raging Pregnant Woman Mode. I was already in labor that morning and did my best to wait, but after 3 hours, we drove ourselves to the hospital. Luckily, my OB, Dr. F, was working as she planned to induce me. Once she saw me, she came in and said, “Okay! I already told the nurses that you are not leaving and to get you settled in a room. You’re having this baby today.” We love her. To this day, I’m so grateful it was her. She’s one of the best.
After hours of IVs and more and more contractions, my water was broken. And those high amounts of amniotic fluid? It was like a tidal wave that soaked Dr. F, the nurse, me, and the bed. But I felt instant relief, and my belly immediately shrank down. Yay! I planned to have the epidural, but for some reason, it wasn’t really working. (We had trouble with the epidural when I had Vita. Maybe I’m immune? It’s the worst.) I definitely had less feeling in my legs, but I could still lift them and walk around. Which I did. The anesthesiologist was a mutual friend of mine and Logan’s so he was just chatting with Logan for a bit. Prior to their chat, Dr. F had just finished telling me that I was dilated 7cm and progressing well. She goes down the hall and plans to come back in an hour. I started to feel the most pressure I had felt thus far and was explaining to the nurse that I was in some major pain and it was time to increase the dosage of the epidural. The anesthesiologist and Logan were still shooting the breeze and I was getting ready to interrupt them just as soon as I could catch my breath and get a word out. The pressure was killing me and I knew that Mars was coming for me. I told the nurse that “this was it” and she was all nonchalant and all “okay, let me come and take a look”. Imagine that popular “okay” GIF of Jennifer Lawrence. That was her reaction. And then immediate panic took over and she was like, “YUP! Baby’s coming now! Let me get Dr. F!” After a few pushes, Mars was out. It was less than ten minutes from the time I was a 7 to the time Mara was out of me. It all happened so quickly, but she was here! And she was beautiful! Tons of hair. Huge eyes. And she looked perfect!
After a quick check, everything appeared fine. Her heart was on the right side, but was beating normal and we would have a few minutes to ourselves before that needed to be examined. Guys, I cannot tell you the relief that I was feeling at this point. She seemed like a perfectly healthy baby and was just snuggling on my chest. I was elated!
At the nurse’s suggestion, I attempted to nurse Mars. She had a lot of foamy bubbles at the mouth, but seemed like she was hungry. Every few sips, she would spit up more foamy bubbles and the tiny amounts of what she had just drank. I had a slight feeling in my gut that something was wrong. At one point, she turned blue for a split-second. We let the nurse know and she picked her up and took her over to the little baby checking table. (technical term?) At this point, so much was going on. More nurses were coming in. Phone calls were being made. A physician came in and told us he was going to take her and just do a more thorough exam to make sure everything was alright. Logan went with them and, in an instant, I was left alone in the delivery room. I was starving and my nurse brought me a sandwich before leaving, so I was just munching on that while looking at the pictures Logan had just taken. I was still unaware that there was a problem, and called to tell my mom that girlfriend was here and all was good.
The next part is fuzzy for me. It all happened so fast and there was SUCH an exchange of information. I honestly don’t even remember how I got to the next room. The doctor who checked Mara came back and told me that her esophagus never fully formed. And needed to be repaired as soon as possible. The part from her mouth ended a few centimeters down in a blind pouch so everything she was drinking either sat there or came back up. Including saliva. And the bottom part that was supposed to connect to the stomach, had grown into her trachea. This specific condition was called Esophageal Atresia and Tracheal Esophageal Fistula (EA/TEF) for short. In addition to this, she also had several other birth defects (her heart, and some vertebral issues to start). These birth defects didn’t occur randomly, and because of that, she was deemed a baby with VACTERL syndrome (a series of birth defects that may be related to each other). Her esophagus needed to be repaired immediately, and we needed to be sure her heart was strong enough to handle the procedure. She was admitted to the NICU and the next few days were a blur while surgeons and specialists came to check everything about our girl. She had her esophagus repaired on day 3. It was the longest five hours of my life. Because her heart is flipped and on her right side, they had to improvise and enter from the opposite side. Her surgeon is a total baller and has been amazing with every procedure since that initial one. I don’t wish surgery on any little one, but if you have to, she’s just the kind of person that you WANT operating on your child.
Mara spent almost a month in the NICU and I wasn’t able to snuggle her like a normal mama snuggles her baby. I was by her side almost every waking moment. And stayed super late almost every night. Just bedside in a chair. Her primary NICU nurse was my hospital BFF and came up with a plan to help me get as close to her as possible. I think those nurses are just other-worldly. She knew what I was needing and did her best to help me and Mars forge as strong a bond as possible while being separated from each other. This was a very trying time for me as I felt that this was just unfair. We had such a rough roller coaster-like pregnancy but after she was born, she seemed perfect. I held her. On my chest. No tubes. Just her and me. And within a few short minutes, that ideal picture was ripped away and left this unexplainable hole. I still get sick to my stomach if I think about it for too long.
After a week or so, Mara was cleared for taking food orally. We started with a couple MLs at a time and it was amazing and scary and stressful and exhausting. Then came the chest tube removal. And the Broviac removal. Each day, something was removed to slowly reveal the most beautiful little girl. A few weeks later, she was discharged and we brought her home. And I haven’t really slept since! I’m only half-kidding. Her surgeon made a plan that included dilating her esophagus frequently to prevent narrowing. We waited about 2.5 weeks from when she was discharged for her first dilation. And they went in and discovered that Mara’s esophagus had narrowed to the width of a pinhole. Literally. We were dilating weekly. Then bi-weekly. Then once every 3 weeks. And then every 4. She has had her esophagus dilated about 13 times. She is required to be put under anesthesia each time. In between those surgeries, she has had four bouts of bronchiolitis since December with two hospitalizations. We’ve had more than two dozen trips to the pediatrician. 5+ trips to the ER. 1 ride in an ambulance. Esophagrams. Cardiologists. Echos. Physical Therapy. Swallow studies. Speech Therapists. Occupational Therapists. Pulmonologists. And that’s just the beginning.
We’ve got more coming down the pipeline as she continues to grow and reach her milestones. Which I know she’ll do because she’s the cutest thing ever. She’s currently sitting up on her own and is just shy of crawling forward! She’s a champ at pushing herself backwards around the house.
I’m doing my best to resume a normal life. But this is a new kind of normal for me. Every cough or cry or wince or gag, I immediately panic and brace myself for an emergency that I feel is just waiting in the wings. I’m not really sure if that’s the right way to live, but it’s how I’ve been getting on for the last almost 8 months. I haven’t slept in my bed since December. I’ve made myself a little spot on her bedroom floor. Floors are better than Tempurpedic, guys. You’ll see.
As we move forward, I’m doing my best to allow Mara as care-free a life I can. I want her and Vita to be close and have that sisterly bond that every little sister deserves. Sweet Vita understands that she has to wash up and sanitize every time she comes home from school. And if she’s sick, she understands that she has to be quarantined and away from baby sis. We don’t really get out much for fear of sick strangers and all the germs that are EVERYWHERE. The littlest cold for a normal baby becomes bronchiolitis and a hospital visit for mine. I’ve become a crazy germophobe, people. Me. The woman who once licked a sucker that fell on the ground at The Home Depot and gave it back to her oldest child! Times, they are a-changin’.
Phew. Wow! Are you still with me? I know this is turning into a novel-type post. But I wanted to share as much as I could, but still toning it down so you don’t disappear for good! Now you know a little more about what has been going on behind the scenes. I love my family so much, but I also love the work that I do here. I love to make and create and share the in-betweens with you guys. It has been a major struggle for me to blog these last few months. There has honestly been almost NO time to do anything but care for baby girl. And the doctors and therapists and fellow EA/TEF parents have started preparing us for what is down the road. It’s not going to be easy. I’m still struggling inwardly with finding a balance for my life here and my life at home.
You’re nearing the end of this post. I promise. 😉 Here are just a few shots of the girls and our adventures since Mara came into our lives.
Every time we go out anywhere, Mars is always in the carseat with a cover over it shielding her from any floating germs. (I hope!) This was her first time outside of the carseat in the store and she was ECSTATIC! I just love this shot so much.
A few weeks ago, Logan and I sat down and really got to the heart of everything related to this blog. I was feeling like I could only post here if I had some kind of project that was beautifully styled and shot. And since there was no time to do that kind of stuff, I resorted to just… crickets. We’ve still got a busy busy schedule, but I’m starting to see the semblance of some sort of routine. And we’ll continue working on that. And trying to carve out time for more blogging. I’ve tried hard to keep up on Instagram, but even that has been exhausting! I don’t know how working parents do it. My hats off to you!
I’m going to get back to the type of blogging we started out doing. The kind that made me fall in love with it in the first place. And that means going back to more conversational essay-type posts. There will still be lots of projects, recipes, and all those home-type posts I love doing, but I’m also going to add some more personal stuff back into the mix. Because, hello! There’s a person behind this site! Me! I love sharing snippets of the girls with you, and I hope that I can continue to do that. And I hope that you’ll still hang around and check for updates because I’m finally finding my way back to the blog and doing something for me. I love this space and love sharing here when I can!
At the same time, I’ve been doing my best to share more and more of our behind the scenes over in my Instagram Stories so you can always check up over on Insta to see what’s going on! Since sharing news of Mara’s birth, I promise you that I read every comment, message, email, and text. Even if I can’t respond right away, please know that your words mean so much to me! And if things get a little quiet, know that I’m still here. I’m just currently taking a nap on the floor of my baby’s room.
Misha Tillis says
Mara is beautiful and you are amazing!! Thank you for sharing your story. I miss you my friend!!!
Mish! I miss you! I’m hoping I’ll get to rejoin you ladies in real life soon! Thanks for your sweet words for mars. 🙂
I love this post. Brings back so many emotions! I love you and your little family.
I know! It brings back SO many emotions. I was actually rewatching polos from that day a while ago and I cried the whole way through!
I saw that your baby had the TEF/EA repair on instagram and tried to reach out because mine did too that day after she was born. She was born last year. But now reading your post I’m freaking out because my Cece has VACTERL too and has also been through the ringer. C is 7 months old now so they’re super close in age. I feel like we need to connect!
Brittany! Yes! You have been on my mind almost everyday! I’m always like, “REACH OUT TO BRITTANY TODAY!” And I keep dropping the ball! But I did see that message and should have responded asap! How is Cece doing?!?! I’m going to reach out to you tonight! I’m setting a reminder in my phone now!
Jacquelyn Clark says
Thank you for sharing, Lexy. Mara is beautiful and sounds like such a fighter! Keeping you all in my thoughts and sending lots of healthy vibes your way 🙂
Thank you for sharing this! You guys have been through so much!
Lexy the water works are coming again! ?❤️ Little Marz has come so far in her short life. Love that sweet warrior and her family so much!
Lexy you are such an amazing woman and your family is so blessed To have you. Marz is just the sweetest thing and we all love your family so much!! I just love that despite everything she has gone through so far she is the happiest little thing ever. Her smiles are heart melting ❤️❤️ Love you!!
Ashley Moulton says