Rae’s Story

Rae’s Story

Lorelee and I and are blessed to share our story with you about how Rae decided to join us a little early.  I will talk about the first few days along with some of my overall experiences. There were so many days since that happened along with so much information that hopefully this reflection will provide you with a little understanding of how our story with Rae began.

Lorelee was 23 and ½ weeks pregnant, or 23.4 days, as I learned in the beginning because each day was so crucial. I was returning home from a volleyball event on June 1, 2016, in the evening knowing I would be getting ready to head out the next day to another event. When I got home Lorelee was in the bathroom, upset, bent over, in pain and bleeding a little.  I said we needed to contact the doctor right away, we couldn’t believe she was having contractions already. We thought maybe it was Braxton Hicks but we called the doctor and they said we should come in right away. We packed the car and rushed out the door. The hospital is about 45 minutes to an hour away. I started out speeding, of course, in the beginning and Lorelee said it’s not going to help if we get in a wreck, which was very true.  We arrived at the hospital and everything that was going on was a blur until we met with all the doctors. Lorelee was getting set up into a room, started on an IV, and had an ultrasound. There were all sorts of people doing different things. I was initially thinking ‘can’t they just stop the contractions?’ Seemed so easy to me. Little did I know there is no way to stop contractions, you can only attempt to slow them down. The next conversation I remember we had was with a group of doctors and nurses talking about viability of life and how they were not required to do anything by law and what the percentages were for survival, not to mention all the issues our newborn could face if she did survive.  Discussions about the physical, mental and social expenses for us, and all of the other challenges our baby might face. I think the success rate of survival was around 40% if she was born this day and if we made it to Sunday-24 weeks-it would jump to 65% to 70%. It took us less than a second to say please do whatever you need to do to help our baby survive. They started Lorelee on magnesium, which makes you feel like you are burning from the inside out, but this was going to help slow contractions. They also administered a steroid shot to help with the brain development and lungs of the baby. Lorelee ended up receiving three magnesium bags and a second steroid shot to help with Rae’s development.  This was the max for both medications that they could administer. Lorelee was amazing throughout this whole process with everything that she had to deal with in terms of pain, not only physical but mentally as well. Each day had its up and downs as she tried to make to make it to Sunday.

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Sunday arrived and things seemed like they were calming down a little.  In the morning when Lorelee’s nurse came in she said “I think your water broke”.  We were both surprised and the doctor was immediately in the room to check things out.  On a side note we saw so many people and doctors over the course of these 4 days that I am not sure I could point any of them out of a line up.  The doctor examined Lorelee and said the baby’s head had dropped and the cord was prolapsed. Rae would have to come now. Lorelee was immediately rushed into delivery with the doctor on the gurney with her and me left wondering what the ‘bleep’ was going to happen.  Over the next hour I paced back and forth, checked my messages and emails a hundred times, stared at my phone, trolled on the internet and Facebook, and this seemed like an eternity. In about an hour a nurse came in and had me come outside. They were bringing an incubator box from the operating room.  It was a flood of emotions which ranged from ‘wow, can’t believe this’, ‘she is so tiny’, ‘what are these lines’, ‘I am scared to death’, “can I look in the box?’ This was my first opportunity to see my daughter Rae. It lasted for only a few minutes because they needed to get her into the NICU and hooked up to the breathing machine, and all the other necessities needed to put her in a good position to be healthy.  Rae was born at 1lb and 8oz, 12 inches long, and her journey was just beginning.

2016 Pictures from phone 2814

The next question out of my mouth was “how was my wife?”  They said she was doing well but they were going to need some time to complete her surgery.  Then again for the next hour there was a flood of emotions, staring at my phone, texting people, hoping everything was going to be okay with Lorelee and Rae.  In about an hour Lorelee was wheeled back in, asleep and in good condition considering what she just went through. A few hours passed and they said I was going to able to go upstairs and see Rae. They had been able to get her hooked up to everything and she was stable.  The next 72 hours were going to be crucial for her. Later that evening I was able to venture into the NICU. Every time you go there are steps you need to go through. You have to check in first, wash your hands very well, only two people are allowed to visit at once (family only-no little kids), and no phones.  They want to keep the NICU as clean as possible from germs and too much stimulation. There are several preemies and newborns, 20 to 30 on any given day being cared for. When I saw Rae I was again as overwhelmed as the first time. There were so many precious lives in boxes fighting to get better. I tried not to look very long anywhere except for where I was walking. Then we arrived around the corner. Rae was in this glass box, with all these beeps and sounds.  Wires attached all over the place, a tube down her throat to help her breathe. I was introduced to the doctor who delivered her, the doctor who was in charge of the unit and Rae, and the nurse who was looking after her. These are all people that we got to know well and who were instrumental in Rae’s development and survival. They started to explain all the instruments, the lines going in and out, what they were monitoring and much more information. Ultimately I took what I could in but it would take several weeks to acclimate.  Eventually I just stared at this tiny little human in the box that was my little girl. Amazed, scared, worried, anxious, and a multitude of other emotions. After about an hour I left and went back to Lorelee. Later that night or early the next morning Lorelee and I got to go see Rae together. They wheeled Lorelee in a wheel chair and we went thru all the procedures to get in. Again, Lorelee and I met the nurse that was in charge of Rae, and the team of doctors who were looking after her. They explained many of the things they had done a few hours earlier.  There were so many risks that they had to keep an eye out for Rae. There were brain bleeds, jaundice, breathing, her temperature, and several more concerns which I am probably forgetting. Over the course of the next week while Lorelee healed and rested we would visit Rae at least 3 to 4 times a day.

2016 Pictures from phone 2861

Watching the box with our daughter hoping things would go okay for her. There were a few scary moments, one where she stopped breathing for a bit, and another where they found out she had broken her arm during delivery and they had to put it in a sling. The doctor who did Rae’s delivery was very apologetic but there was no need.  She had saved Rae and we knew it would heal. A few days later we were able to feed her from a q-tip as well as touch her for the first time. Both exciting and extremely scary moments. But as we came to learn each of these small things were milestones that we needed to look forward to. There were so many unknowns and we couldn’t focus on things we couldn’t control. That doesn’t mean we both didn’t go through a range of emotions each day.

Then the day came were Lorelee was able to leave the hospital and we had made our plan with how we were going to see Rae daily.  The NICU was about 45 minutes to an hour away from our house. We had decided we were going to visit 2 to 3 times a day and stay for a few hours or longer each time.  We knew it would be tough but it didn’t matter. I also believe we were lucky with work because it was during the summer and our schedule is very flexible. Basically outside of keeping up with some emails our focus was entirely on Rae.

Over the course of the next 115 days we faced a multitude of challenges, surprises, sad and extremely joyous occasions.  Keeping things in stride and tackling them as they came. I remember one of the first challenges was jaundice, while it was common it was still scary to see her under a special light.  It lasted a week or so and she eventually got past it. Transfusions were a big part in the beginning as well. Should couldn’t make enough blood cells yet and she needed help. Because she needed so many they had to use a few different bags which meant risks each time.  There was a constant monitoring of infections because the immune system is not very tough or built up yet. Rae had several instances where she was given medicine to help when these occurred. There was the time when they told us she had a small hole in her heart that had not yet closed. The doctors provided us with a few options, medicine or surgery.  We opted for the medicine and after a few weeks they felt like it had worked. One of the biggest challenges she faced was breathing. She was incubated for a long period of time and she went through different phases were she needed more help than others. As a parent you stared at the numbers on the monitors several times a day hoping they would slowly improve only to be depressed when they didn’t. It didn’t matter how many times they told you not to stare at the monitors you still did.  Rae would have good stretches and bad, it was an extremely slow process for sure. Eventually about 70 days in or so she moved on to another machine called an oscillator. Then the last phase was the nasal cannula which was great because we knew she was finally progressing towards the end with no more breathing assistance.

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Many times it was explained to us that she could fight respiratory problems for the rest of her life.  Nobody knew for sure how she would develop in that area. Another big challenge that came into conversations were brain bleeds. They would do ultrasounds weekly to make sure things had not changed or they didn’t see any blood on her brain.  I remember when they said they saw an enlarged area on one side and thought she had a small brain bleed. There was nothing to do except monitor it to make sure it didn’t get any bigger. Depending upon the size of the bleed would determine if she needed surgery and/or have cognitive function problems later on down the road.  As time went on they felt like the area on the ultrasound had decreased and it should be ok. Another area of concern was her eye development. Because she was on oxygen she was at risk to popping blood vessels or even detaching her retinas because of the exposure to extra oxygen. Rae would be checked once a week and even after we left the NICU was checked once a month for a while.  One of the last challenges was actually after she had just come home. She had been home for a few days. I was at home in the evening and Lorelee was at work. Rae went into a choking or aspiration attack. Her lips squeezed on her tongue, her face turned blue and she looked like she was choking. I turned her over and did the baby Heimlich maneuver and called 911. This might have been the longest 30 seconds to a minute in my life.  I thought Rae was dying right in front of me. Thankfully my neighbors are firemen and the paramedics were there in minutes. By the time they walked in Rae was doing better and her color had come back. They checked her out and things looked good. We called the hospital and thought it was best if we returned and had her looked at for a few days. We were only admitted for two days and then able to journey back home. There have also been the challenges we have faced at home, from the hemangioma on her arm and bottom, to feedings in general (not eating much), managing multiple appointments and checkups, breathing complications, and development.  Rae has been the strongest little fighter I could of every imagined. Along with these challenges there were numerous miles stones. The first time we got to hold her or kangaroo her. Kangaroo holding is where she lays on your chest for a period of time. The first time we feed her though the tube. The first time I was able to give her a bath and she felt so tiny in my hand. The first time I got to change a diaper, smallest diaper I had ever seen. When family got to meet her for the first time. When I got to change her clothes for the first time. When she moved out of the incubator into a crib. The first time we got to feed her a bottle. The first time we held her and there were no few lines or wires.  When she did her first car seat test because she was close to coming home. When we left the NICU the first time with Rae and were scared to death. Then the second time leaving the hospital because we were hoping it would be the last time. Rae also went through what we called very different development stages. When she was first born she looked like an alien, then in a few weeks looked like a tiny old lady, then this tiny baby with weird features, and then finally just a small baby. We continue work on small milestones now that she has come home. I believe all parents do this with their kids and we are no different, we may just be on a different time table for a while.

The whole experience within the NICU was incredible, they saved my little girl, my wife and opened my eyes to a world that I had now idea about.  The doctors, nurses, staff, specialists and everyone else in that department and associated with them have a job that impacts so many lives. Even after we left the NICU we became part of a program called “Early Intervention”.  They have provided specialist in every area you can think over the past few years which has been critical in Rae’s overall development. We have had physical therapy, speech therapy, development therapy, nutritionist, and occupational therapy.

The idea of this site is to raise funds to help people that are going through these challenges with their preemie. This is our way of saying thanks.  Hopefully this story and our mission impacts you.

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