#30DaysofBrave - Day 21 - Jayme & Kelsey

Our journey began abruptly, right at the start of the pandemic. It was my third pregnancy. I was feeling great. We were ready to set a date for my repeat c-section. My OB ordered one final ultrasound, a growth scan (I make big babies), for 32 weeks. I was hesitant to get it because in my mind, why risk exposure for an ultrasound that is going to show a big baby and I was having a repeat c-section anyway. Boy, was I about to get blind sided.
On the morning of 3/17, I decided, “what the heck?” And I was going to call the radiology outpatient that I worked steps from. They had availability at 2pm the same day. Perfect. I went in for my ultrasound, the tech was super nice, said her system was having trouble uploading images all morning and she will be right back. The baby was weighing about 6.5lbs at 32 weeks 6 days (not unusual for me). I called my husband and told him we have another big baby on our hands while I awaited the tech to return.
But when she returned, she didn’t return alone. The radiologist was with her. All I remember was hearing the words, “She has fluid where she isn’t suppose to and you need to go to the hospital.” “Wait, what?” was my response. “We spoke with your doctor and he wants you to go right now.

I’m in healthcare so i was putting 2 and 2 together. I immediately started crying, called my husband, and the rest was a blur. I remember someone tried to hug me and I wouldn’t let them. I remember my supervising physician (I’m a physician Assistant), asking me if I was okay to drive. And then I remember being in the hospital. Answering questions I didn’t have answers to, and then finally my husband arrived just as the attending OB came into my hospital room.
“It looks like your baby has hydrops.”

How can that be?? She was NORMAL on an ultrasound 2 weeks prior!!
“I don’t know, but it’s pretty severe.  We are transferring you to the city so you can have access to a Level 3 NICU to give her a chance.”

A chance? What do you mean a chance?
“The odds aren’t in her favor. But we want to give you and her the best care we can.”

And then my mind was blank. She was stable on the monitors, so they did let me go home first, but the drive into Philly was terrifying.

Once we were there, we had a lot of doctors and nurses coming in and out. The OB at the new hospital came in, did a bedside ultrasound. He found fluid in her skin, bilateral pleural effusions, and abdominal ascites. He kept saying, “I’m so sorry.” I lost it. I broke down I  My husbands arms. The pain I felt was intense  I felt like I lost her before she was even here.
My nurse through the night was amazing. She allowed me to collapse, crying in her arms. I don’t remember her name. But she was special.

That night, I barely slept. The game plan was to have all hands on deck for delivery. She would need to be intubated, bilateral chest tubes, IV’s immediately- if she were to survive delivery. It was so surreal. Her heart rate on the monitor was rock solid. I felt her moving inside of me. How can she feel so normal, but yet be so sick and doctors telling be she may not survive the first 48 hours, and possibly may not survive the delivery. The perfect family I had been imagining (3 little girls on Christmas mornings), was being ripped from my future memory.

My husband and I spent the next 12 hours crying, talking, praying, and just being. She didn’t have a name. After much thought, we knew we wanted to give her a name with meaning- something to indicate the fight she was about to face. We settled on Kelsey James. Kelsey means victorious island/brave. James honors my dad (he has 2 daughters and now 3 granddaughters).

The waiting was horrific. The morning team came in and we discussed the plan. I remember asking, “but she has a chance tight? We know she has normal anatomy for a 30weeker.” And the neonatologist said, “if we didn’t think she had a chance, we wouldn’t put you or her through this.”  That’s what I needed. After all the bad news, I needed someone else to believe in her like I did. I didn’t need any more I’m sorry’s- I just needed possible.   When it was time I sent 2 people messages. “Game time. Prayer time.” As my husband was changing, I grabbed my belly, looked up to God and said, “please don’t take her. I can’t live without her.” And then I talked to her. I told her that she was brave. She was strong. And she was fierce. And that I needed her to fight.

And then in the OR I walked.

I shook uncontrollably. There were easily 20 people in the delivery room. 6 for me and about 14 for a Kelsey- a team to intubate, a team for right chest tube, a team for left chest tube, and team for IV. Kelsey was born quietly at 1:23Pm on 3/18. I never heard her cry. I didn’t know she was born until 5 minutes after. But she was BORN. They were able to intubate her smoothly, place each chest tube, place an IV, take off about 8 ounce of fluid from her pleural cavity. But for the moment, she was stable.

She was transferred to the NICU and hooked up to multiple pumps. She was so swollen. Her ears were folded over due to her skin edema. But she was beautiful. The next few days were touch and go. She would fluctuate her fluid. Non-immune hydrops fetalis is a tricky beast. It’s an end stage symptom to an underlying problem that they don’t always find. This condition is mainly fluid resuscitation and balance. Giving Kelsey what she needs but not taking too much away. And a lot of prayers. I re-enlisted myself to God and my faith during this time. During Covid, no one could come see us. The NICU visiting hours even changed during my hospital stay to only one healthy parent at bedside once a day. Which means after 3 days, we had to chose who saw Kelsey that day. And her sisters or grandparents would have to wait and be patient to even meet her. Which also meant that I had to find a strength I didn’t know existed in me.
Covid also progressed from a PPE. When we arrived Tuesday night, business as normal except for visitor restrictions. By Saturday, only one parent in the NICU.  By Tuesday, 1 week after this all started, masks worn by all staff. The next day- masks worn by all visitors. 2 weeks later, eye wear worn by the staff. The isolation that the pandemic threw into the mix made a devastating experience almost unbearable.

As days ticked on, Kelsey slowly but steadily turned corners. Doctors would say “if” a lot. I would correct then and say “when”. Things improved slowly. After 2 weeks, her left chest tube was removed as well as her UA line. After 2.5 weeks her right chest tube was removed and UV line removed. After 3 weeks she was extubated. After 4 weeks, she only needed nasal cannula air flow and her IV’s were removed. After 5 weeks she was moved to an open air crib. And then after that our biggest struggle was normal preemie things- learning to drink from a bottle, not having any desaturatation events or bradycardia events.   Kelsey was putting up a fight. And after 56 days, countless sleepless nights, multiple days where I broke down due to the guilt and overwhelming trauma, and enormous strength and fight, Kelsey came home.

Kelsey is a miracle. And anyone blessed to have cared for her witnessed this. Her doctors words exactly were this: “if you would have told me (8 weeks) ago we would be where we are today, I wouldn’t have believed you. This is nothing short of miraculous.” He always said- this is Kelsey’s world. She will tell us. And she did. For a lot of families, the NICU is a marathon, not a sprint. It’s a place where miracles exist. We are forever grateful and indebted to the NICU for saving our baby girl. Below is the post I made the day we brought her home:

“ 56 days ago, you entered this world without knowing what this world had in store for you. From the minute you were born, you were born a fighter. The fight of your life was thrusted upon your body and your soul rose to the occasion. For the past 56 days, you have proven time and time again that the world should not doubt you. The world should, indeed, embrace you because you, my wild flower, cannot be tamed. You NEVER took no for an answer. They said no- you said watch me, a trait you undoubtedly inherited. You inherited nick-names: feisty, spit fire, warrior. You coined a phrase: “This is Kelsey’s world. She tells us.” For the past 56 days, we were always by your side. We watched you not only survive, but we watched you THRIVE. We watched you be brave. We watched you be strong. And we, oh yes- we watched you be fierce. And today, 56 days later, we leave the place we entered with a renowned sense of what it means to truly live. We leave WITH you. We leave WITH you to live the life you are meant to live. And the world better be ready for the greatness you will, without a doubt, bestow upon it. You, Kelsey James, have beaten the odds. “And sometimes, against all odds, miracles happen.”

Today, she is a happy baby who is reaching her adjusted milestones. She is brave. She is strong. She is fierce. #hopeforhydrops #hydropssurvivor #teamkelseyjames #kelseystribe #hydropsmiracle