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Challenge: NICU Parenting

Our Destined Miracle and PPROM Journey

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Our daughter is 9 months old but our story really starts back 6 years ago, the night my Granddaddy Jim passed away. He was very sick and not of present mind. To him he was not in a hospital bed he was busy working in my grandparent's antique store and didn't recognize any of us. Bill, my husband, came to the hospital straight from work (he and granddaddy were close because of their naval careers) and he walked in and granddad looked right at him and said "Hey Bill" and then he faded back to the antique store. Mama and I were shocked. A little while later everyone had left to talk to doctors or to take a break and it was just Bill and I with him. I was sitting on the side of the bed and Granddaddy grabbed my hand looked me in the eyes and said, "Bill and Katie I don't want you to worry, one day you're going to have a little girl." And again he drifted back to his own reality. Hours later he was gone, but Bill and I felt he had given us a very special gift even if it never happened we felt special to have had that moment with him. We didn't know if it would happen because we were still dealing with a step parent adoption with our son Hayden and we honestly didn't know if we wanted to have another child because we were good as a family of 3.

Fast foward 3 years and the legal battle/adoption is done. We were so relieved we just wanted to enjoy our lives without having towith my exhusband and the legal drama. We traveled, I focused on getting healthier, we just enjoyed being a family, so having a baby just didn't feel right then either. Fast forward 2 more years, we found out my sister was pregnant with my beautiful niece. It was exciting and I enjoyed going shopping for baby things. Then Hayden started pushing harder to have a sibling. So he only fueled my minor baby fever to the point that Bill and I had to have a serious discussion in July 2016 haha. Hayden was almost 10 so if we were going to have a baby we were running out of time in our minds before the age gap would just be too much. So we were just kinda like what will happen will happen, well... we found out we were pregnant August 7th!

Everything seemed to be going relatively smoothly, until Hurricane Matthew messed up one of my ultrasound appointments. It had to be rescheduled for a week later and by that point the baby was too big to do the visual Down Syndrome measurement completely so instead I had to have a blood test done called a Quad Screen. I wasn't too concerned based off of what the tech had said and that this just an extra precaution to make sure the measurements made sense. Well my results were emailed to me on Veterans Day and my heart hit the floor when I read them. Down syndrome risk was none, Trisomy 18 risk was none, but Neural Tube Defect risk was extremely high. I called the doctor's office in a panic but with it being a holiday no one was there to answer my questions. I waited all weekend alternating between crying, accepting it was what it was and we would love the baby no matter what, googling, and then crying some more. On Monday I called and was scheduled for an emergency Level 1 ultrasound and consultation with the genetic counselor the next day. Bill, Mom, and I went and were extremely relieved to find out there wasn't any evidence of defect, however there was a bigger problem. My amniotic fluid was low, really low.

The genetic counselor looked back at my previous ultrasounds and noted that my fluid level was steadily dropping. However they couldn't tell us why. She said some women's placentas are just defective. I was 19 weeks pregnant and told that there wasn't anything they could do and our best option would be to terminate because our only other option was go home drink water and pray but that the outlook wasn't good if my fluid kept decreasing. That the baby would be stillborn, or if by a slim chance she did make it she would have serious lifelong issues being physically handicapped, mentally handicapped, or both. Bill and I both felt very strongly that we could never make the decision to terminate. We went home and I went to work researching ways to increase amniotic fluid. I tried everything, drinking 2 gallons of water, coconut water, I even drank gelatin mixed in juice because I read it helped. I went back to the doctors 2 weeks later and my fluid hadn't decreased any! It gave us hope. Unfortunately it didn't last long.

A week later, on December 6th, I was 22 weeks, I got up in the middle of the night to find that I was bleeding. I panicked, we called my doctor's emergency line and they told me to monitor it and if it got worse to go to the hospital. It felt like the longest night ever. By the next afternoon the bleeding had stopped and I felt relieved but still nervous but I had a doctor's appointment the next day so I figured they would make sure everything was ok. But the morning of my appointment I was laying on the couch and when I sat up I felt a huge gush of fluid. Again I panicked, I was terrified I was losing the baby. I knew at 22 weeks there wasn't much the hospital could or would do to save the baby because viability is widely accepted as 24 weeks. Bill rushed home and rushed me to the hospital where the next 4 hours took forever. They took me back did an exam and tested the fluid and told me that my water hadn't broken and in fact my fluid level was fine, low but fine. I don't think I've ever cried happier tears in my life. I went home feeling better but still scared because deep down I didn't understand how it wasn't my water that broke.

Well over the next month I bled and leaked off and on, some days a lot and some days none. I had 2 separate ultrasounds 2 weeks apart and my fluid actually increased, not much but some which was huge to us. By this time we were sure it was in fact a girl and it seemed like Granddaddy Jim was right. We were hopeful again and I was trying to settle into my new normal of bleeding and leaking but the doctors kept saying everything was ok. But everything wasn't ok, I was a basket case all of the time worrying what was really going on, I spent as much time googling and researching. I did my best to enjoy the holidays and Hay's birthday.

We went to dinner on January 9th, I had been leaking a little more than usual so we were going straight home after but as I stood up to leave I again, like a month before, felt a huge gush. Bill rushed me to the hospital and my greatest fears were confirmed, I was leaking amniotic fluid. I was diagnosed with PPROM Preterm Premature Rupture of Membranes. I saw the same doctor I had seen before and she even admitted that I had probably had a slow leak this whole time but that my records would indicate 26 weeks as when it started, even though it was actually 22 weeks or as we now believe around 16 weeks when my fluid levels began to drop. The doctor told me they were admitting me that night and that I would need to stay until I delivered, which they hoped would be at 34 weeks. I was sent to Labor and delivery in case I went into labor that night. They gave me steroids for the baby's lungs and magnesium sulfate for the baby's brain, this stuff is straight from the devil himself.

Thankfully I didn't go into labor so I was moved to antepartum, which would be my temporary home away from home. It all happened so fast it was hard to process that I was looking at weeks away from being home with Hayden and Bill. My parents were amazing and my mom just immediately took over helping wherever she could. So began my own personal Groundhog day, blood work, pills, ivs, stress tests, ultrasounds, doctors, nurses, and hospital food from hell. Bill came to stay with me every weekend, Mom, Dad, and Hay visited often and thankfully brought real food. My cousin Bryan came to visit which was great too. It was so emotionally and physically draining but I knew it was best for Leila and me. I still kept bleeding and leaking but was being closely monitored. I kept doing my own research because the doctors weren't telling me much about what exactly was going on. It was during this time I found the Facebook group Little Heartbeats. It was all about education about PPROM. It seemed like a wonderful group so I emailed the founder Ciara and explained my story. She was so kind and told me they would send me a whole care package with information. It was such a blessing because otherwise I would have been completely in the dark.

The weeks were passing slowly but I wanted to keep Leila in as long as I could. On the morning of the 22nd I had a lot of blood so they moved me to Labor and delivery to watch me closer. I spent all day there and my bleeding improved so they moved me back to antepartum. I was thankful that I didn't go into labor but I was concerned that it wasn't a good sign.

The next day was fine, just business as usual, but in the early morning of the 25th I woke up feeling like I had tummy cramps. I quickly realized those tummy cramps were coming 4 minutes apart and were actually contractions. I called Bill and told him to come up to the hospital quickly and I called my nurse. Soon after Bill arrived I was taken back to Labor and delivery where they realized I was in labor. I was 29 weeks and 1 day pregnant. I was terrified but I knew Leila was coming whether I was ready or not. My labor progressed and my parents came up with Hayden. Bryan came up to see me and was great with Hayden because he was having a hard time watching when I would have a contraction. My contractions were back to back at this point so the doctors came to check me. I was at 4cm so they said to give me an epidural. By the time the anesthesiologist came in I was already feeling like I needed to push but they kept telling me not to push...not sure how you fight that urge. I kept yelling telling them but no one listened. They finished the epidural insertion and I laid back down. I had to push, I yelled I'm sorry and out Leila came. The epidural didn't even have time to do anything. 14 hours of all natural labor with a spontaneous delivery in my bed.

Leila Kay Rose was born at 6:34PM on January 25th weighing 3lbs 1oz and 15.75inches long. The nurse scrambled to get the nicu team there as quick as possible. They quickly took her upstairs. It would be 6 hours before I would see her. Bill and my parents went to see her in the meantime and she was doing great. Leila ended up spending 59 days in the NICU. It would be a week later before I would get to hold her as she was under IVH watch until they could do her head ultrasound and she had an umbilical IV. She was on high flow oxygen for a few days, and then off oxygen for 2 weeks. She was under the bililight for 4 days. Her weight dropped to 2lbs 8oz. She had to go back on a small amount of oxygen on Valentine's Day for 12 days and then off for good. She had her feeding tube for 55 days, which she hated and ripped out often. She had one blood transfusion towards the end of her NICU stay because of anemia due to prematurity. Ultimately in comparison to other's NICU stays her's was relatively uneventful. She primarily needed to grow and learn how to eat. She came home March 24th and has been doing great. She is our miracle baby that has changed us all.

I look at my sweet girl and think of that "counselor" and the other doctors telling us to terminate. I also think of my Granddaddy Jim who all those years ago knew what we couldn't have. Bill says that he always kept that in mind when things got really tough, that Leila was supposed to be here so everything had to be ok. This was the hardest thing I think any of us have been through, but it has made us all closer. It has changed me as a person and as a mother. My children are miracles, each for their own reasons and I cherish every minute of being their mama. Everyone's NICU experience is different but everyone's experience is difficult. We saw babies come and go, some in hours, some days, weeks, and some months. We thankfully met some great parents in the NICU and have kept in touch. It's great to see them and their babies doing great especially knowing the hell we all went through. Taking the journey milestone by milestone made it easier for us instead of dwelling on days and weeks.

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