World Prematurity Day: Katherine's Story - A Guest Blog

Welcome back to The Naptime Bloggers!  It's Sunday, and around here that means we get to be lazy, and our readers do all the work!  Just kidding ;)  In honor of World Prematurity Day we are posting a story about a very special preemie!  So, grab your tissues, sit back, and enjoy Ashely's story...

Ashley is a SAHM of 2 beautiful girls and they're expecting their 3rd girl at the end of January. She sews and crochest a lot and LOVES to cook and bake. She loves seeing things she's made make other people happy, especially her little princesses. She has known her fiance, James, for a little over 5 years and are planning their wedding for next fall!

Katherine’s Story

"Our story really begins months before conception. My fiancé and I decided in March of 2010 that we wanted to start trying for a second child. So I scheduled an appointment (on my birthday) to have my IUD birth control removed (it had been in since October 2006 after my first daughter was born). The removal was much more painful than I was lead to believe it would be and was partially embedded. But the NP who removed it told me everything should be fine and we should be able to conceive on my first cycle.
May rolled around; my cycle was normal, and we did lots of baby dancing that month. We got a big fat positive the last week in May, but I immediately started bleeding and we lost that sweet baby.
I didn’t require a D & C, and we were told we could try again on my next cycle.
July 15 we got another positive! We were so happy to have conceived again so quickly. I was sure this baby would hold on. Afterall, I never had problems with my first pregnancy. But a week later I started bleeding again. Another trip to the ER, baby was still hanging in there. We were told it was a “threatened miscarriage” and I would probably lose the baby in the next 24-48 hours. Of course we were devastated; all we wanted was a baby.
The bleeding stopped after a day and I made an appointment with my OB to check things out the following week. The baby was still there and we even saw a heart beat! I was a little more hopeful at this point but still very frightened. What was that bleeding all about?
Another 2 weeks, another trip to the ER for more bleeding, another “threatened miscarriage” diagnosis. And again, and again, and again. Finally, my OB did a long ultrasound looking all around in my uterus. The baby was still hanging in there, but I had a large Subchorionic Hemorrhage (SCH) and it was right under the placenta. That can cause all kinds of problems: nutrient restriction for the baby, early rupture of membranes, preterm labor, and if the bleed got large enough, the placenta could detach which could kill our baby. Scary stuff.
The weekend before Labor Day, I was at work, alone, and felt the (by now) familiar sensation of blood. But unlike in the past (when the bleeding was light), this was a gush. And it didn’t stop. I just knew that I had lost the baby. I called someone to come in and cover the store and started crying hysterically. A customer asked me what was happening and when I told her I was miscarrying, she forced me to sit down, shepherded all the other customers out of the store, turned off the open sign, locked the doors, and called the squad. By the time they got there, my pants were dark red with blood all the way to my ankles and there was a pool of blood on the floor. I don’t remember too much after that except for tears and fear until my fiancé got to the hospital. At that point I could calm down enough to tell the medical team I had been diagnosed with a SCH and could they please listen for a heartbeat, just in case. When I heard that heartbeat, loud and strong, I completely lost it, screaming “she’s still there! She’s still there!” Over and over. The other patients in the ER must have thought I was insane. My fiancé just held me and we cried together. The baby seemed to be doing fine, but I had lost a lot of blood and was still passing clots the size of my hand so they kept me overnight. The next day, my OB told me “if you don’t stop working, you WILL lose this baby.” That solved that. I went home on modified bed rest: stay in bed or on the couch as much as possible, no walking unnecessarily, no lifting anything over 10 lbs, no driving. Basically stay in the house and do nothing as much as possible. I ended up watching a whole lot of Disney movies and snuggling with my soon-to-be 4 year old on the couch.
Fast forward to 25 weeks and 2 days, the beginning of December. We had put up the Christmas tree the night before and I was feeling distinctly like crap. I put on a movie for my daughter and fell asleep. She woke me up when it was over asking for a snack. When I moved my legs to get up, I felt a little pop and a little wetness. What the heck was that?? I grabbed her a granola bar and went to the bathroom. I peed but when my bladder was empty, there was still fluid coming out. I called my mom to take care of my daughter and my fiancé to come home and drive me to the hospital. They checked me out and told me I peed myself (which I knew was untrue), that it was nothing to be ashamed of (I wasn’t), it happens all the time to a lot of pregnant women (well duh!), and sent me home. The next morning I woke up with a huge gush of fluid. Back to the hospital we went, this time contracting. The put me in a room on a monitor but I was so small, the monitor wasn’t picking up the contractions. By the time a nurse came in to check me, I was contracting a minute apart and they were lasting about 30 seconds. My Dr rushed to L&D and gave me a shot to stop labor and started a magnesium sulfate (mag) IV. I was transferred to another hospital with a Level III NICU.
Thus began our hospital time. I was in the PICU for 3 days on constant monitoring and a mag drip. If you’ve never had mag, thank your lucky stars. It makes you feel like you have the worst flu ever. Your body aches all over and you get very week. By the second day, I couldn’t support my own weight to go to the bathroom. But it was effective, labor was stalled and I was given steroid shots to boost the development of the baby’s lungs. After that, they released me to the postpartum unit to wait it out until labor started again or we developed an infection. They told me the vast majority of women go into labor 24-48 hours after all that with ruptured membranes. A neonatologist came in and gave us some pretty grave statistics on survival rate. Even if she did survive, she still faced a whole host of possible lifelong complications: asthma, blindness, deafness, cerebral palsy, ADHD, autism, permanent brain damage, paralysis. The list went on and on. But the longer I could keep her in, the better she would do.
Every day, the doctors made rounds at 4:30 a.m. and expected me to be able to talk to them(yeah right!)about what was happening and my concerns about the baby. Every day, we had to have a nonstress test. Every day, they told me the same thing, “we’re not seeing the kind of accelerations in her heart rate that she should be having. Every day, they brought the ultrasound machine in to do a biophysical profile. We never had more than 6 cm of fluid, most days it was only 1-3 cm (for reference a normal fluid level is 12-18 cm). Every day, she proved the doctors wrong by staying put and even doing breathing exercises on the ultrasound. I was so proud of her. Every day I told myself, “one more day, one more day.” We kept going like that for almost five weeks. The doctors were astounded. After a few weeks, they even took pity on me and let me order my meals off the Doctors’ and nurses’ menu. They were much tastier. During this time, my family was amazing. My mother, father, 2 sisters, aunt, cousins, and grandparents all took it in turns to take care of my other daughter, sometimes keeping her for days at a time so my fiancé could go to work and come see me in the hospital. Our daughter was wonderful, too. She thought she was on a vacation with the whole family spoiling her like that. And my parents and sisters brought her to see me in the hospital several times each week. She would always start by giving me big hug and snuggling in the bed with me. I was so thankful to have people I loved and could trust to take care of my child. We celebrated Christmas right there in my tiny hospital room. My grandparents bought me a tiny Christmas tree and my daughter decorated it. Santa came and brought all her presents to the hospital (even the ones from grandpa) so she could celebrate Christmas with me. My mom and sisters even brought me come awesome Christmas dinner.
On a Wednesday at the beginning of January, I started feeling not like myself. I was super tired and had a soreness in my abdomen and didn’t want to eat anything and the baby wasn’t moving too much. The nurses got worried and sent me back to the PICU for monitoring. Thursday went OK. I slept most of the day and watched a movie or 2, I don’t really remember. Friday, January 7th, I had an ultrasound downstairs to check growth and development. By the time I got back to my room after the ultrasound, I was in severe pain. It was so bad I was crying. I called the nurse and told her. She called the doctor and told her. She called the resident and told him. Before I knew it there was a team of 6 doctors standing in my room. The asked me how I was feeling and prodded my belly. They looked at the monitoring strip. The Head Honcho Dr. looked me in the eye and said, “I’m sorry but you have an infection. This baby needs to come out now.” I had expected it but it was still terrifying. We were only 30 weeks! I didn’t want a baby in the NICU! What if something happened?!
“How much time do I have? I don’t want to have this baby alone.”
“The OR is full, you have 30 minutes to get someone here.”
I immediately started making phone calls. Fiancé was first (and dumbest), “but honey, I can’t leave the store right now, no one else is here.”
“I DON’T CARE IF YOU NEVER GO BACK TO THAT STORE! THIS BABY IS COMING IN 30 MINUTES AND YOU NEED TO BE HERE!!”
My parents were much better, they both left work immediately and picked up my other daughter so she could come meet her little sister. Then my sisters, who immediately jumped in the car.
I laid there crying quietly and talking to the baby until the first of my support team arrived. Thankfully, the surgery before me took longer than anticipated and I had a full hour which was enough time for everyone to get to the hospital. I wasn’t alone anymore.
They wheeled us to the OR and got me prepped. I received a spinal block which didn’t take all the way on my right side. So, they gave me another shot which still didn’t take all the way. The surgical team decided that it was working *enough* and cut. My daughter was born minutes later. She was tiny and red and let out the smallest cry I’ve ever heard. It was absolutely heart-rending. I didn’t know a human being could make a sound that small. They took her away immediately to the NICU and I didn’t see her for hours. They had to try to clean some of the infection out. This was so painful I blacked out. Apparently after I blacked out I was screaming uncontrollably, writhing in pain, and trying to get off the table (even though I was strapped down). They had to put me under completely and I woke up in recovery dazed and confused. My fiancé was there, with tears in his eyes, stroking my hair, and telling me how much he loved me. He told me the baby was fine, she was in a room in the NICU and we could see her later. All of my family filed in one by one to hug me and cry with me.
After recovery, I went back to my room and started pumping. I couldn’t get out of my bed or really do anything. I had a catheter in and was completely miserable. The incision was so painful and I couldn’t sleep. I wanted to see, touch, hold my baby so badly. I felt so empty and lost and I cried so much. Eventually I began to get severe pain in my jaw and my incision; I thought I was dying. The Dr came in and told me I HAD to sleep. That I wouldn’t heal if I didn’t sleep. And if I couldn’t heal, I couldn’t see the baby. I slept for 2 hours. When I woke up, I told the nurse to bring me a wheel chair. I was going to the NICU to see my baby, and if she didn’t bring it to me, I would crawl to the NICU. She brought me the chair. My fiancé wheeled me down to her room. I had to stand at a sink and scrub my hands up to my elbows for 2 solid minutes before I could even touch her. She was naked (except for a diaper that was literally the size of 2 postage stamps) and tiny and red. She had a huge harness on her head that was holding a bunch of tubing on her little nose. Her head was smaller than the palm of my hand and covered in thick black hair. She was the saddest, most beautiful thing I had ever seen. I looked at the card on her isolette, 2 lbs 14 oz, 15 ½ inches long. She didn’t even look big enough to be alive. She was amazing.
I started to learn the terminology in the NICU. Every day, all day, I would pump for her and bring it straight to her room. I would sit next to her isolette and talk to her, sing to her, place my hand on her. You see, with a preemie that small, you can’t rub or pat or rock or do anything that would stimulate them too much. They need rest and warmth to grow. The first few days she had an IV that was feeding her lipids and antibiotics. She was still too fragile to have my milk. And she had a CPAP (continuous positive airway pressure) rig on her head. It helps keep the airways open in the lungs so they don’t collapse between breaths, scary, right? She was also under the UV lights to help her billirubin levels go down. Being under the lights meant I couldn’t even hold her more than 30 minutes each day. Can you imagine only being able to hold your newborn baby for 30 minutes the whole day? It was torture.
On the 3rd day after she was born, I was discharged from the hospital. It took forever as I had accumulated a lot of crap in my room during the 5 weeks I was there. I walked to the NICU one more time to tell her I was leaving, but that I would call and check on her and I would be back tomorrow. I managed to make it out of the hospital before breaking down completely. I sobbed and sobbed and sobbed. I felt like I was going to strangle with the pain of it. It was absolutely the hardest thing I’ve ever had to do. After about 20 minutes, I got myself under control and my fiancé offered to take me to a real dinner (since I had been living on hospital food) to cheer me up. We went to Red Lobster. It was probably the most incredible thing I’ve ever eaten.
I called the NICU as soon as we walked in the door to our house. She was fine. Still sleeping. Everything was normal. I cried, slept for an hour, got up, pumped, and called the NICU. Still fine. Cried, slept another 2 hours, got up, pumped, called the NICU. Still fine. This would become a pattern. The next day, my fiancé went to work, leaving me at home with our 4 year old. I thought and thought and thought. There was no way I could get back to the hospital. I was devastated. The next day I called my dad crying because I couldn’t stand to be away from her anymore. He came to pick us up and drove us to the hospital. When we arrived the CPAP harness was gone and I got to really see her little face for the first time. She was amazing and beautiful. She also had a naso-gastral (NG) tube which was a tiny tube running from her mouth down to her stomach. They were giving her my milk and she was thriving on it! I was intensely happy about that. They also took her off the billi lights which meant I could take her out of the isolette and hold her as long as I wanted to. She was doing so well; I was so proud of my tiny girl. We got to do skin-to-skin or Kangaroo care. This is essential in the NICU. It’s where you hold your baby (in just a diaper) against your bare chest. Of course, she was covered with about 4 warm blankets to keep her toasty. But it was Heaven. Kangaroo care helps preemie babies regulate their breathing, body temperature, and heart rate. It releases endorphins which help them with pain management and helps them to grow and heal. It also helps mom’s milk supply increase and decreases symptoms of PPD. We stayed at the hospital for several hours and my dad took us home. Saying goodbye the second time wasn’t quite as heart wrenching, but there were definitely some tears shed.
We had a pretty easy NICU stay compared to other 30 weekers. After the first couple weeks, she was allowed to wear clothes finally, though even the “preemie” sized clothes were huge on her. She was moved to the step-down unit inside the NICU, which is less intensive, intensive care, if that makes any sense at all. She was just a feeder/grower at that point. They gave her my milk; she digested it well and she grew. She had a head ultrasound to make sure there were no hemorrhages in her brain. She had a heart ultrasound to make sure she didn’t have Patent Ductus Arteriosis (PDA) which is when a small vessel that allows blood to bypass the heart while baby is in the womb stays open. It usually closes on its own shortly after birth in full term infants but preemies are different and some even have to have surgery to close it. She had several eye exams to make sure she wasn’t developing retinopathy of prematurity (damage to the retina caused by too much oxygen at birth and incidentally the reason Stevie Wonder is blind). She had heel sticks and blood draws. She had a PICC line placed (a more permanent form of an IV, placed in a large vein in the arm using ultrasound). She was being constantly monitored. She had a tiny blood pressure cuff on her leg (literally the size of a bandage), a temperature monitor attached to her belly, a pulse/ox monitor on her little foot, heart monitors stuck to her chest, and a high-flow nasal cannula taped across her face. Every 3 hours were her “care times” when a nurse would come in, change her diaper, take her temperature, change her position in the isolette, and feed her. I tried to be there for as many care times as I possibly could.
At 34 weeks (4 weeks after she was born), her doctors decided it was time to start training her to breastfeed. I got to go to the hospital and stay for 3 whole days and nights. I went to every care time and tried to breastfeed. Her nurses called me every 3 hours during the night so I could be there. Mostly she just slept and didn’t drink much and ended up being tube fed. She was still so little and sleepy. I was disappointed, but hopeful. After the 3 days of trying to learn to nurse, I had to go home, but they would continue to try to give her feeds via bottle (if I wasn’t present to nurse her). Mostly, she continued to be tube fed. She just didn’t have the stamina to take all her feeds by mouth and she definitely wasn‘t very interested in breastfeeding. She would just latch on and fall asleep.. Slowly over the next couple weeks, she got stronger and better.
The Friday she turned 36 weeks, she was still only taking a few feeds by mouth and I went to the hospital like normal. During her care time, she reached up and pulled the NG tube out of her nose. I asked the nurse to let me breastfeed her without the tube and we could replace it after the feeding. I latched her on, and she nursed like a champ for 15 minutes solid without falling asleep!! I was astonished. They decided that was “enough time” to have received a full feed and left the tube out. Three hours later, we tried again. She latched right on and nursed again! It wasn’t quite as awesome this time, only about 10 minutes, and they put another NG tube in to finish the feed. But that was definitely a good thing. The Dr came in to talk to me that evening. He was so encouraged by the progress she had made that day, he asked me if I was available to stay the weekend at the hospital again.
“Seriously? Of course I am!”
“Good, I think she might be able to go home next week if you can stay.”
I was totally over the moon. Go home?? Wow. I was NOT expecting that when I walked in the NICU that day! So immediately after her next care time, I wrapped her up in the isolette, drove home as fast as possible, rounded up some stuff for the weekend, and had my hubby drive me back. We started a pattern that night, tube feed one feed, nurse the next. She was getting better and better and more awake every time. The next day was even better. Tube feed one, nurse two. By Sunday she was consistently taking the breast at every feed. I stayed in the room with her *almost* all day and night (I did have to leave to eat and catch a couple hours sleep). She passed her car seat test with flying colors (she had to sit in her car seat for 20 minutes and not have a drop in heart rate, breathing, or oxygen). She was moved out of her isolette and into an open crib. The nurse called me all night long every time she woke so I could feed her on her schedule instead of the NICU schedule. I was elated. Monday morning came; at rounds the Dr told me they would be drawing up the discharge paperwork. Things were happening so fast, I could hardly keep up. I called my sister and started packing up the room. We had a ton of things to take home: extra clothes for me and her, blankets, toys, coloring books, and markers my 4 year old had left, plus all the regular hospital stuff: 2 or 3 thermometers, diapers, wipes, the tape measure they used, baby wash, lotion. One last weigh-in, she was 4 lbs 10 oz. My sister got to the hospital with my car and shortly after that, they gave us our walking papers.
The feeling of leaving that hospital WITH my baby is completely indescribable. I had walked that way a hundred times before, but this time was so different. The ladies at the front desk had tears in their eyes as they hugged me goodbye and told me how beautiful she was. I even walked over to postpartum to show the nurses there the amazing miracle they had helped bring into being by taking care of me. I felt like I was walking a foot off the ground. Nothing could puncture my happiness. After 5 weeks on bed rest and 46 days in the NICU, I finally, *finally* put my baby in the car and drove her home. She slept the whole way except for the 5 minutes we stopped at daddy’s store so he could hold his beautiful baby.

She’s been home with us every day since that day, and she amazes me still. She has hit every milestone she should (most of them ahead of time). She’s a very active, healthy, intelligent, and TALL little girl who is snoring beside me as I’m typing this. You would never in a million years guess she was a preemie by looking at her or talking to her. She is truly a miracle."




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Coming up this week on The Naptime Bloggers

• Monday -  Lady Hurricane's blog
• Tuesday - Lady Sunshine's blog   
• Wednesday - Lady Luck's blog
• Thursday - Lady Runner's blog
• Friday- Lady Imagine's blog
• Saturday - Lady Bug's blog
• Sunday - Guest blog!
  
  
  
  Until next time!