Rory's Story

"At 33 weeks we were blind sided with the news that our sweet girl had developed Hydrops at what was to be a routine Non Stress test with a fluid check. I tried my best to hold it together, but honestly I felt confused and scared. How? Is this my fault? Why? were all running through my head.

I was told that I needed to have Non stress tests twice a week with fluid checks from then on, and if the baby had decreased movement to get to the hospital immediately. I was so freaked out, I had never heard of Hydrops. So I did the worst thing, I could’ve done…I googled it. My heart sank & I began to realize this wasn’t going to be an easy road for our girl. Then to prepare my 6 & 7 year olds that their sister was going to be born sick and would most likely require a hospital stay longer than mommy.
Fast forward one week later, at 33 weeks 6 days, after another fluid check, it was determined that I need to go directly from there to the hospital for admission. I would need to 2 steroid shots in order to help boost baby girls lung strength and would be a C-section in the morning.

This was scary on so many levels, first we needed to go to a hospital with a higher level NICU, our OB Practice didn’t have privileges at this facility so it would be a doctor we’d never seen nor met before. But I was committed to doing whatever was best for our girl.

I was admitted first shot of steroids were given then it was a constant in and out of doctors and nurses explaining what would be happening over the next 24 hours. I did my best to take it in and hold it together but Inside I was losing it.
That night I wasn’t able to sleep very well, horrible reflux and anxiety had overcome me.

At 9 am, I hugged my fiancé and told him I’d seen him in the O.R and walked with the nurse to the c-section room. They prep me and then allowed my fiancé to join me. As they started, I remember thinking just let her cry when they take her out. After what seemed like an eternity, my fiancé said, “She’s out”. My heart sank- she didn’t make a sound, I just wanted to shout “be quiet” because the nurse and doctors were talking through the procedure of closing me, but I was trying to hear the nurses and doctors who were frantically but quietly trying to resuscitate our girl. They allowed daddy to get a quick peek before they took her elsewhere to continue life saving measures.

After being back in my room for less than 10 minutes, the neonatologist came in and informed us that our baby girl, was very sick. She needed to be transferred to an even higher level of care and would need to be transferred to AI DuPont. They were having trouble with blood pressure and she desperately needed chest tubes. I hadn’t even seen my baby girl and she was going to be taken away!

I told her dad this isn’t good and her chances of survival were getting slimmer that he needed to leave me, I would be fine (lies). But I couldn’t have our girl be all alone.
On arrival, she received her first set of chest tubes, they continued to maintain her breathing tube and blood pressure meds. She was started on TPN as well has many other meds. Her daddy arrived and was immediately sent to a waiting room as they were still working on her.
I was discharged 2 days later and had a short visit with our older girls then immediately went to switch places with my fiancé to be with our Baby girl, Rory Ember.
Rory came ready to fight, she endured several chest tube changes, IV changes and tolerated that breathing tube like a champ.

I remember just sitting and staring at her for hours, touching her little head and at times just telling her not to give up as I’d put my finger in her hand. She didn’t after just 4 days they were able to remove the breathing tube and just have nasal cannula.
About 5 days after she was stable enough, that I was finally able to hold my girl for the first time. It took 6 people to safely get her out with all her tube and wires. But I was over joyed to be able to put my cheek against hers and give her a kiss. We rode the roller coaster of emotions for the next several weeks, there were good days and there were days when I thought I wasn’t ever going to bring my baby home! She was having trouble with maintaining body temperature and tolerating bottles. Overall she blew the doctors away with how well she was doing.

All while I felt like I was being torn between two worlds, my baby needed me but my older girls also needed me. It was a struggle, I honestly didn’t think I was going to be strong enough for all of them. After 3 weeks, she was transferred to a NICU closer to home. She slowly learned how to eat from a bottle and began taking more from that and less from the NG tube. She finally was taken completely off oxygen support.

But this is when it all hit that our Rory was truly a fighter and a miracle survivor. The NICU manager stopped in and said, “omg! She looks amazing! When we sent her out, we all prayed because we didn’t think she was going to make it.”

At just short of a month we got to bring Rory home to finally meet her big sisters’!
We are blessed that Rory had such amazing care in the both the NICUs, they all will hold a special place in my heart for the role they played." -NICU Mom, Emily.