Our Edith is a week old. And she’s been home for three days. Let me say that again…she’s been home for three days! This is not the reality that we thought we would be living. I mean, it was and then it wasn’t, so we are trying to soak in every second of this.
Last Friday, we went to our routine perinatologist appointment. As she was looking at Edith via ultrasound, she went through her usual speech: “baby looks good, her heart rate is the same as before, she has no fluid around her organs”…and then she briefly paused and said, “but the amniotic fluid around her is very low. You guys ready to have a baby?” Wait, what!?!?
All this time we have a baby with a severe heart defect and now you’re telling me we’re going to deliver early due to low fluid? And not just early, but on my daughter’s birthday?Yup. We went home, finished packing our bags, and waited on Chris’ sister to arrive to watch our two year old. Our 45 minute ride to the hospital was full of mixed emotions – silence, deep thoughts, laughter, and anxiety. Chris was so giddy he could’ve exploded. I was so anxious I could’ve cried.
We spent that evening filling out mountains of paperwork, having my vitals checked by all the nurses, and waiting on the doctors to decide what time we were going to deliver. Thankfully, they unhooked me from all of the vital sign machines and decided to let me sleep (or pretend to sleep) that night and deliver Edith the next morning – they would be better staffed with our team of doctors in the morning.
Saturday morning came quick. Right after 10 AM the nurse came in and said our delivery would be at 11 AM. Reality hit. It was like all of a sudden we finally realized we were going to have a baby, no more waiting. I think I saw the color in Chris’ face evaporate – I had not seen him be anxious much through all of this, but in that moment you could feel all of the emotions in the room.
Chris soon put on his finest hospital garb and joined me in the operating room while my mom and dad waited out in the surgical waiting room. All of my bottled up emotions escaped me as I was laying on the operating table and looked over my right shoulder to see a team of about six nurses standing next to a NICU incubator box thingy. I cried out all of the fear, anxiety, and disappointment. I also cried out all of the thankfulness and excitement. Chris so graciously sat beside me and wiped away every tear that fell, praying for us and Edith as the nurse would hand him another tissue. It was a sweet moment…until I said something like, “don’t let my makeup run down my face.”
I’ll leave out all of the exciting details that make up a c section – use your imagination. She was born at 11:28 AM, 5 pounds 5 ounces, 17 3/4 inches long. She came out screaming (glad to know her lungs were working!) with a head full of dark hair!
After getting to hold Edith for maybe a minute (a gift we didn’t anticipate having), she was swept away to the NICU to be closely monitored – those first few hours were critical in determining what our next steps would be, and no one had any idea what to expect.
Edith spent four days in the NICU, hooked up to monitors, with around-the-clock nurses closely watching her heart. In utero, her heart rate was between 55-65. A concern was that the trauma of delivery and entering the world may cause her heart rate to drop. But much to the surprise of everyone, it stayed right around 60. When she was asleep it would drop down to around 55, and when she was upset (like the time she pooped all over herself…literally) it would spike into the 70s. The nurses and doctors were more than pleased with how she was doing. All of her other vitals looked just like any other healthy newborn. One doctor even commented that if you didn’t listen to her heart, you wouldn’t know anything was wrong! We knew our girl was a fighter, but she continued (and continues) to prove that to every doctor and nurse she saw. Though her heart beats slow, it beats strong.
A friend said it best when she said “we prayed for a big miracle” and a big miracle is what we got, although it may not have looked like what we imagined. Our miracle came on Tuesday when her NICU nurse, Rachael (who we LOVED), looked at us and said she had good news – they were moving Edith out of the NICU, unhooking her from all of the monitors, and she was coming to the nursery on our floor. AND…she was going to be able to stay with us IN OUR ROOM until we were discharged. We. We, as in, both of us. Our girl was going to come home! Through her diagnosis, one of the things I grieved was not being able to take our baby home. I didn’t get to do that with our first born and was heartbroken when I learned of her heart defect and the reality that either she would need surgery immediately or she would stay in the NICU to be monitored for a while. God heard the cry of my heart, and gave us the gift of taking our baby girl home with us. It’s a gift that I SO treasure. It was a miracle in light of her diagnosis.
So, what’s next? Even though our girl is doing so well, even better than anticipated, she’s not out of the woods. She still has a severe heart defect. There will come a time when her heart gets tired. One’s heart can only beat at half time for so long. No one can determine how long that will be, except our girl. It could be next week or next year. Or maybe even longer. This “tiring” will be gradual. It won’t happen over night. We’ve had multiple people ask us why she doesn’t have a heart monitor. Her heart won’t just stop suddenly. We will be going to weekly cardiology appointments. Essentially, the cardiologist will be her heart monitor. As her parents, we watch for indicators that maybe she’s getting tired – not feeding well, not growing, excessively fussy, or heavy sweating. When the time comes, she will have surgery to insert a pacemaker.
Our main concern right now is doing what we can to make sure that she doesn’t get sick. The common cold for most children is no big deal. For Edith, it could mean a hospital stay. Because her heart beats so slow, it doesn’t have the ability to speed up to boost immunity to fight illness/infection. Her threshold for sickness is much lower than that of a healthy infant. Any sniffles or sneezes warrant a call to the pediatrician. That said, if you see me being crazy mom, asking you to wash your hands twelve times before holding my girl, or asking you not to kiss her face or touch her hands, or staying far away from you if you’ve been sick, it’s because I AM being crazy mom – my job is to protect my Edith.
For now, we are going to enjoy every moment we have with our girl. We don’t know what tomorrow will hold. We don’t know when the call for surgery will come. But what we do know is that we have her for this moment. We know God listens to our hearts. And we know that whatever comes our way, tomorrow, or in ten years, He will give us the grace to walk through whatever. It’s been a beautiful journey thus far, chock full of love, hope, and goodness, and we anticipate nothing less as we walk forward.