WHEN EVERYTHING IS GREAT, BUT THEN IT ISN'T
If you know me personally, you've heard many parts of this story. It's been a year and a half, and it wasn't until recently I realized what a traumatic period of time last year was for our little family. The whole time we were going to through it, I was in survival mode and I'm still getting over it. By sharing our story, I hope to raise awareness but also show you a different side of things.
WHEN EVERYTHING IS GREAT, BUT THEN IT ISN'T
When I was pregnant with Em, I had the normal pregnancy paranoia that I feel like most moms feel. Constantly hoping everything's okay, wondering when she's going to move next, etc. I even bought my own doppler so I could check on her at my leisure (totally worth it, by the way). When we went for a level 2 ultrasound and they scanned all 4 chambers of her heart, they said everything looked great.
Fast forward to her birth. It wasn't the most wonderful birth experience, but it wasn't awful. She came out bright pink, screaming loud and proud, and almost 10 pounds! The doctor and nurses were so proud, handing her to me. They laid her on my chest, and I immediately felt that something wasn't right.
"Her breathing, it seems really fast... is that normal?" I asked, looking up at the nurse. The nurse quickly assured me that everything was fine and that she was just "learning how to breathe."
She was born at 4:01pm on a Tuesday. I must have asked every nurse that came in to check on us about her breathing. They all continued to assure me that everything was fine. "Just look at her, she is doing great!" I must have heard a thousand times. Even the pediatrician that saw her at 7:00 am on Wednesday said that she was fine, except for a small heart murmur she heard. And with that, she assured us that it was probably nothing (which could be true, I actually have a heart murmur and no heart problems).
The beginning of it all: Around 9am, a lactation consultant came in and noticed her breathing was strange. FINALLY, so I wasn't crazy?! She immediately had a nurse come in who checked her oxygen levels and saw that something was off.
After this, things become a little blurry... like a whirlwind.
I was told to throw on some clothes. So I threw on a robe and we ran out the door with the nurse, and our baby in a plastic bubble (what it felt like) and went straight to the NICU. Still, at that point, they told us we'd be back in an hour or so and there was no way something was wrong with her... "Just look at her!"
These moments in the NICU... they will stay with me forever. My husband and I had never felt so vulnerable before, together, in the same situation. I remember us sitting in the waiting area, me in my robe, not even caring. Where ever my baby was, I would be. I called my mom and told her that something was wrong and to tell all the visitors to not come. It broke my heart that my grandmother would not get to meet Emaline that day, but I knew they wouldn't let anyone in the NICU. Also, at this point, we still thought that the issue was just a small one. So I figured everyone would be able to meet her the next day once we figured out what was happening.
The waiting game: The cardiologist on call finally got there and performed an echocardiogram on her, telling us numerous times "Something is very wrong. I can't tell you exactly what, but we need to get her to Egleston ASAP." Comforting, right? He spent the next day or so trying to get her a bed at Egleston, while we spent the next day or so FREAKING. OUT. On the inside. I've been told that we held it together and seemed so in control... but honestly our world was crumbling right in front of our eyes and all we knew was that we might not have the baby girl we had hoped and prayed for.
Finally, on New Years Eve, a bed opened up for Em and she was transferred to the children's hospital. Within 30 minutes of arriving, the cardiologist already had a diagnosis and a solution.
We knew we were in good hands. He was the first person who had told us all week that everything was going to be okay, and we went home that evening feeling like our daughter was safe, and we finally slept for the first time in days. I'll never forget the nurses in the CICU that made such an impact on us that day, and that month.
The diagnosis: Little did we know, that Miss Em, this spunky almost 10 pound firecracker of a girl... actually had Shone's Complex. A rare Congenital Heart Defect. In addition to the underdevelopment in the left side of her heart, she also had Coarctation of Aorta. This was operated on a couple of weeks after she was born.
It should have been done within the first days of our visit at CHOA, but unfortunately she contracted a serious infection that spread to her spinal fluid and we had to wait for that to clear. I won't go into much detail about the infection, but let me just say --- scariest. two weeks. ever. I thank God every day for the infectious disease team who stepped in and handled it. And can you believe that she didn't get any side effects from the spinal meningitis? Amazing.
Back to her heart: So the plan was, to fix her Coarc (a narrowing in her aorta) and then see how her heart responds to that. They told us they were unsure if we would need to operate on the left side of her heart (her valves are too small). They said maybe, just maaaaybe, her heart would try to catch up once the blood flow was normal. So she had her Coarc surgery and did wonderful. I am going to post a photo of her post-op, and this might be hard to see, but I just want to show you how far this girl as come.
The day after her surgery, a cardiologist came by and told me that they had done another echocardiogram, and that the pressures in her heart seemed very high but they will keep an eye on it. I didn't really know what that meant, but since she seemed nonchalant about it I didn't let myself worry. A few days later, they told us they were going to send us home (Hallelujah!) but our favorite cardiologist stepped in as we were packing, and said there may be a problem.
He said that we may not actually get to come home... that they actually shouldn't have sent us to the step down unit yet (where you go when you're almost ready to be discharged). The pressures in her heart were way too high. But he said he was ordering an emergency echocardiogram to be performed just to double check.
My husband and I looked at each other like... you've got to be kidding me. Heart. Broken. Time stood still as another echo tech came and performed the ultrasound on her heart. She kept checking her notes, re-checking them, and then finally called a colleague in to double check her. "Nope, that's all correct. You did it right." My husband and I looked at each other again, confused.
Minutes later, the same cardiologist who had ordered the emergency echo rushed in, with a smile on his face and said "I thought I was looking a different baby's heart! This is a miracle baby! Go home!"
So, in the short span of a few days, her heart had already improved so much that they thought they were looking at a different child during her echocardiogram.
Whew! So we were finally off the hook. Sort of... she had a few more complications, which involved a PICC line and a feeding tube. But we were finally able to come home after almost 30 days in the hospital.
She was able to come off of the feeding tube at 4 months old, and successfully graduated from feeding a therapy at just over 13 months old. The feeding tube was another nightmare within itself, and I'll save that story for another time. If you're reading this and your baby is on a feeding tube or going through therapy, I'd love to talk with you!
As you can see, we are all SO proud of our girl. She hasn't had to have valve surgery or any other heart surgery since her Coarc repair, and we praise God for that. The doctors say she is a miracle and that she may not even need surgery. We count our blessings.
Those days when she was in the hospital, and I had to leave her every single night were the worst days of my life. I wouldn't wish that on anyone. I know I kept my head up high and acted strong, but I was crumbling on the inside. I needed and appreciated every single text, phone call, email, or message. If I didn't respond, it's because I didn't know how to. If you sent a gift and received no thank you note, I truly am sorry but please trust... it meant more to me than you know.
I learned a lot through this experience... friends that I thought were close, aren't as close anymore. And on the other hand, I have friends that shocked me and really stepped up to the plate. People who I hadn't heard from in years reached out. As much as we all "complain" about social media these days, you have to admit. It's a pretty amazing tool that connects us all, even in the darkest of times.
To share, or not to share? Deciding on whether or not to share her situation publicly was hard. I was riding in the ambulance to the children's hospital, all by myself, when I realized I hadn't told any of my friends what was going on. I texted my closest girlfriends and it broke my heart, having to tell them that something was wrong. Looking back, it hurt my pride as well. We wanted so bad to be the quintessential new family, posting adorable pics of our newborn. But we weren't. We were fighting for her life.
It was the next day that I decided - either we keep it private, or we share it with everyone. We chose to share her story publicly. Because why does a mom who has a healthy child get to share every detail about her new baby, but I don't because she has health problems? Some people didn't know how to respond or reach out, I get that. But the stigma that every new mom has about everything being perfect and beautiful is so damaging to us. I don't regret sharing our struggles during that time (I chose to do so via caringbridge, which I loved). I needed that outlet. I needed your support, and I'll never forget those of you who were there for us during such a hard time.
I struggle writing our story, because I know how lucky we are. I am part of many "heart mom" groups and I see other babies with CHD's who aren't so fortunate. Babies that routinely go in for heart surgery or mamas that have to constantly worry if everything is okay. That isn't our current situation, and I feel unworthy of being so blessed. I also follow and see other babies with other health conditions. Things I cannot even fathom having to go through. I remember going through the lunch line every day (with pizza... their pizza is THE BEST... haha) - and I'd see the list of patients and how many days they'd been there. My tiny 28 days was NOTHING compared to the numbers I saw on that list. It was a constant, humbling experience to be in that hospital.
Of course, sharing her story raises CHD awareness which is so important. And I also want you to know, if you're a mom-to-be, you ARE your child's best advocate. Go with your gut, ask questions, and do not let them treat you like you're just a paranoid first time mom. I feel very much that I was treated this way at the hospital where I gave birth (friendly reminder, she wasn't born at CHOA).
But the bigger topic here is how we dealt and are still dealing with life, when things go so terribly wrong and unexpected. I was so blindsided by all of this, and I'd be lying if I told you I'm fine. I still worry about my baby. She is amazing, and if you saw her you'd never know she had a rough start. But we're talking major PTSD here. Everyone tells you when you're pregnant not to worry about anything, everything will be just fine. You worry, but then you think it won't happen to you. I wouldn't change anything in the world about this girl... and I feel so honored to be her mother. But it's been 1.5 years and I am just now starting to feel okay again. And that's okay. I'm okay with that. I pray a lot, hug and kiss my girl as much as possible, count my blessings, and thank God for every day we have together.
When everything is great, but then it isn't... what should you do? Let your guard down and people in. Let people help. Pray. I promise you, it helps. Through all of the ups and downs, I also want to mention my husband. He was my rock through it all, and still is. When you go through something like that together, it either breaks you or makes you. We have a special bond now because of it. Our family and friends were and still are amazing.
And to the doctors and nurses of Children's Healthcare of Atlanta: During our 30 day stint, every single morning I got sick to my stomach driving to Egleston. Worried about what the doctor might say. But as soon as I walked through the doors, I felt okay. Like... everything is going to be okay. Because every single nurse and doctor we had treated us like family.
The cardiac unit at CHOA was so influential in our hospital stay, and I've been wanting to find a way to give back. I am partnering with Kendra Scott in Buckhead next week and I would love to see you! We will also be featuring the "Emmie" necklace I've designed. 10% of every purchase will benefit the cardiac unit at CHOA, and you'll also receive a 10% discount off of all purchases! Phone orders for the Emmie necklace are also being accepted, with free shipping!
Here are the details:
Head over to the next post where I'm sharing all of the details on the necklace I designed for Emaline! And if you actually read this entire blog post... thank you, from the bottom of my heart for reading. This was hard to write.