So, if you've read the first several posts you know a little bit about the beginning of this story. You’ve read about the miracle of us getting pregnant after 4 years of infertility – you’ve read the story about me being in the hospital on bed rest, trying not to have her and the miracle of her staying close to home after birth (not being transferred out of state). You’ve read about how she got the best of care from her doctors, nurses and respiratory therapists. You’ve read about her making it through surgery at 2 ½ weeks, surviving infection, coming off of the ventilator and finally, after 3 months in the NICU, coming home. Miracle, often a word used too lightly, is the only way to describe the moments leading up to and following Emy’s birth.
Since Emy returned home from the hospital, I've hesitated...no, avoided really diving into how things were. I'm writing this now to...uummm, maybe close a chapter...or could just be cheap therapy!
We were so excited the day the nurses called and told us that Emy would be coming home. It was a moment we had anticipated for nearly 3 months. We packed our bags and prepared for our "room in" at the hospital. “Rooming in” is where you spend the night in the hospital and the nurses prepare you for your preemie's homecoming. Terrified and excited, Dustin and I sat through the lessons on how to hook up the apnea monitor (worn 24 hrs. a day) and set up, administer and transport her oxygen. As one nurse perfectly put it, Emy has "accessories"! Oh so positive! It's hard enough to take home a "normal" newborn...imagine one with "accessories".
The first week she was home, Dustin was able to help me quite a bit. He even took over a good part of the feedings. So with feedings every three hours, after preparing the bottle, feeding time and holding her upright for 30 minutes afterward (to help with her reflux) you can imagine how much sleep we were getting! The second week Emy was home, Dustin left to go to Florida for training. Thank the Lord that his mom was able to stay with me for that time period. During that time, Mia got the flu which could have easily sent Emy back to the hospital (if not worse) had she caught it. To keep this from happening, I kept my two girls separated for almost a week. My mother-in-law kept Mia in the greater portion of the house, while I barricaded Emy and myself in my room. It was a very tough time and I don't know what I would have done without my mother-in-law's help.
Those first few months, our home could have rivaled any major triage center. We had it all; oxygen tanks, monitors (yes, plural), bandages, meds galore, masks and enough anti-bacterial gel to coat the state of Oklahoma. I was administering 4 different medicines to Emy several times a day. Any time we’d sniffle or sneeze, we’d whip out the surgical masks and proceed to wear them around her for the next several days. We had to keep a close eye on her oxygen tanks as well. She had one main tank (5 ft. tall) in our room and 3-4 portable tanks in the living room. We’d watch the levels closely and switch out the tanks when needed. One of the first few days she was home, I brought her into our living room, hooked her up to the oxygen tank and proceeded to do the things I needed to do while she took a nap. I glanced over at her after about an hour and she was blue. I ran over and picked her up and hurried to check the oxygen. My first thought was that the oxygen company had sent us an empty tank, but the closer I looked I noticed that the setting I had put her on didn’t click into place – so she was receiving no oxygen…for an hour. I picked her up so fast that it scared her – she was fine, but I was the one crying. When I told her pediatrician at our next appointment what had happened, I thought I could make it through the story without crying. Fat chance! He was very reassuring and finally convinced me that I hadn’t screwed her up for life!
We had another oxygen scare. A major ice storm hit Oklahoma. It was bigger than expected and most of us were not prepared. Dustin and I lost electricity and had no way to keep us warm (can’t have an open flame around oxygen tanks), Emy’s monitors only had a 15 minute battery life and we also had no way to heat up bottles. We packed up and headed to my parent’s home. We had no way to safely transport our 5 ft. oxygen tank so we packed up all of our portable tanks. Well, one day turned into four and we found ourselves running desperately low on oxygen for Emy. We put in a call to the oxygen company and quickly realized that nobody had shown up for work do to all of the ice. Um, what? Really! We finally tracked down a tank at a nearby hospital and Dustin braved the storm to pick it up. During that time nothing was easy, but let’s face it…easy is boring!
Once we got settled in to our at-home routine, I started to deal with things that must have been suppressed during our struggle to bring Emy home. I was mourning something, but couldn't understand what I was feeling. Maybe I was mourning a normal pregnancy...mourning the beautiful scene of a typical labor, delivery, flowers and daddy, friends and family taking pictures of the new addition to the family. I had no one wheel me out with this cute little bundle in my arms. Maybe I was mourning the loss of a full term pregnancy. And maybe I was just mourning the chance to be able to show my baby to the world. I couldn’t really understand what I was feeling. Due to Emy's lack of a solid immune system, she only left the house for doctor’s appointments and the occasional visit to her grandma and grandpa's house. At first, I refused to leave the house - afraid that something would happen to her when I was gone. Eventually, it became hard for me to leave the house even when I was able too. I even cut off communication with so many people that I loved. Dear friends & family called, emailed and sent letters & cards, but it was all I could do to make it through the day sometimes. Even though I was silent for so many months, everyone’s encouragement was not unnoticed and will forever be close to our hearts.
During this time, Emy’s aunt (Dustin’s sister) lost her 2 year battle with ovarian cancer. She was an amazing person. Like her brother, she never met a stranger and was always willing to lend a helping hand. She loved unselfishly and was loved so very deeply. Danna left behind Eddie, her husband, Blake (college age), Josh (college age) and Jason (4 years old). Emy and Danna were very sick at the same time and were only able to meet once. I’m so very sorry that Emy will never know Danna. Little did we know that Danna would live on in the niece she would never know. When Emy shoots us the biggest of smiles, it’s undeniably Danna.
Although this was the toughest of times for our family, we have never seen the grace and love of God so perfectly shown through the work of His people. During this process, we had so many people praying for us. So many things could have gone wrong, but God gave Emy and us the strength we needed. God’s love was shown to us through people offering to watch Mia, bringing meals, offering to mow our grass, offering to clean our house, get the baby room ready, pastors leaving notes at Emy’s bedside, nurses singing to her, bringing me gifts to pass the time in the hospital, calling us with encouragement and sending up prayers. What was once a heart-warming symbol of how God takes care of us became our reality…we now know what it feels like to literally be held and carried through the storm. It’s an indescribable feeling.
We are one grateful family.
I am merging Emy and Mia's blogs into one new blog. Thank you all for keeping up with our story. If you'd like to visit our new family blog you can find it at:
www.gigglesandcurls.blogspot.com
