Problem: Bronchopulmonary dysplasia, Retinopathy of Prematurity, Intraventricular Hemorrhage
Solution: Months of respiratory support, Oxygen and feeding tube for discharge home
Outcome: Hitting milestones like a champ! Challenges with gaining weight and eating orally
Our Story: Our daughter Lana Rose was born at 24 weeks (4 months premature) in August 2015, due to severe preeclampsia and HELLP Syndrome. She spent the first 6 months of her life at Children's Minneapolis NICU and was discharged in February 2016. Needless to say, it was an incredibly emotional, stressful and difficult time for my husband and me, and our families. She is our first child, and we wanted nothing more than to have a normal, easy and uneventful pregnancy. Little did we know at the time, we were in for a huge roller coaster of ups and downs; joys and fears; happiness and sadness; triumph and tribulation; hope and uncertainty, but most of all an unconditional love that brought my husband and I closer, and helped our little girl grow big and strong.
Something Wasn’t Right: During my 20-week ultrasound I was told by my OB that my pregnancy was considered high-risk; I had low amniotic fluid and our baby was trending small for her gestation. Between weeks 22 and 23, I started feeling an increasing amount of abdominal pain, fatigue, nausea, headaches and shoulder pain. We learned later that I was experiencing symptoms of preeclampsia, and its ugly step-sister, HELLP Syndrome.
One night I woke my husband up in a panic told him to take me to the hospital. I was having trouble breathing coupled with chest pain. We were admitted to The Mother Baby Center right away and spent a little less than a week under strict observation and bed-rest.
Our pregnancy story is featured in the December 2018 Plymouth Magazine. Thank you, Plymouth Magazine!
Five days later our miracle baby was delivered and my husband and I became parents for the first time. To say we were ill prepared for what lay ahead is an understatement! Prematurity doesn’t have a playbook, and comes with incredible ups and downs, and far too many possible outcomes and variations that truthfully, no one—sometimes not even the doctors—can predict. We spent six months with our daughter at Children’s Minneapolis before we were finally able to bring her home.
In The NICU: Lana was (and is) the second smallest micro-preemie born at Children's, weighing just 11 oz (330 grams) and measuring 10.5 inches. It has been a long and arduous journey, but one that we are so thankful for. Despite the uncertain beginnings, Lana did exceptionally well at the hospital. We had three incredible primary nurses (Tammy, Kate and Katie), and saw many doctors and respiratory technicians during our stay. When Lana first came out into the real world, I remember Dr. Mrozek telling us that Lana was breathing by herself! At the time, I thought that was normal and didn’t really understand how incredibly amazing those first few days were; we simply had no idea what prematurity can do to a little person. We had no idea that her lungs weren’t even supposed to be working—and yet, our Tiny Warrior Princess was pushing through and fighting. She had an incredible will to live, which showed us the meaning of the human spirit and the triumph of love and prayers, as well as the incredible gift of modern medicine and modern technology.
Because Lana was so small and fragile at birth (her eyes were still fused shut; her skin was so translucent we could see the dark spot of her liver), we weren’t able to take her out of her isolette and hold her for “kangaroo cares” for nearly 6 weeks! But we were very involved in her cares, and we were able to hold her in the isolate, change her diapers, and give her breast milk (she used to love that!). In fact, the first time that my husband Mike EVER changed a diaper in his life was shortly after Lana was born. He was terrified but was coached through it with the help of our primary, Tammy.
The biggest challenges that Lana had while in the NICU, was her breathing and weight-gain. There were many days that we just weren’t sure Lana was going to make it. There were a few times we were fearful she might have respiratory failure and that would be it—there would be nothing more that we or her doctors could do. Lana gave us a few scares, but she always pulled through at the last possible minute. Her other big challenge was weight gain. Weight gain was a slow and steady game, and to this day, it still is a challenge for her.
The medical team in the NICU was amazing, even when I expected them to override my own instincts. When going through an acute medical journey, it’s sometimes hard and scary to speak up on one’s behalf. You may feel as though you’re not qualified and that the doctors know best. Several times during Lana’s NICU stay we learned to speak up on her behalf…and for our preference and comfort as her parents. At first, we were TERRIFIED to say something to the nurse manager. We were afraid of being labeled as the “difficult” parents, and we were worried that maybe by speaking up we would jeopardize Lana’s quality of care.
In fact, the opposite happened. The nurse manager was very understanding and reassuring. She was glad we spoke up and told us that it’s our right as parents to express our preferences, and that in no way would we be jeopardizing our daughter. A huge weight was lifted when we spoke up and advocated for our preference. In the case of being a NICU parent, you feel helpless at times as you can’t to care for your child in the way that you were expecting to. Advocating for our preferences empowered us and helped us to regain our strength, confidence and rights as Lana’s parents.
When Lana came home in February 2016, she came home on continuous oxygen and a feeding tube. The first two years at home were incredibly challenging for us and for Lana. She had a lot of feeding intolerances, severe reflux and vomiting due to an immature gut. We suffered long days and long sleepless nights dealing with her GI issues. I became a stay-at-home mom and full-time caregiver to Lana during her first 22 months. I am forever grateful to have had that time with her, but those years took a difficult toll on me mentally, emotionally and physically. Through it all, Lana was a very happy and easy-going baby! She hardly cried as an infant and usually slept like a champ (once we figured out how to best treat her GI issues and provide her the right nutrition for her delicate tummy).
Today, Lana is a vibrant, talkative, charming and intelligent little girl with a beautiful smile and wonderful personality. She is bilingual (Russian, from her Dad’s side, and English) and has quite a strong vocabulary and comprehension in both French and Spanish (from her Mom’s side). She is strong-willed and opinionated and very curious about the world around her. Lana turned three in August and is still dependent on her feeding tube for most of her nutrition but has made tremendous progress with oral eating and weight-gain. Shortly after Lana turned two, and after many months of struggling to gain weight, we found out that Lana has a pancreatic enzyme insufficiency—which means her pancreas does not produce enough enzymes to break down fats and digest her food properly. With the help of synthetic enzymes during feedings, Lana has been able to steadily gain weight over the past year. She is currently enrolled in PT, OT and Feeding Therapy and with the help of early intervention, and her talented and dedicated therapy team, has made great progress in all areas of development.
In September 2018, we decided to enroll Lana in an intensive tube-weaning program at the University of Virginia Children’s Hospital called the Encouragement Feeding Program. It was the best thing we did for Lana and for our family! While she didn’t leave the program completely weaned from her tube, she made the most progress in her oral eating and recognizing hunger cues from the program and its formidable director, Polly Bickley.
Surrounded By Family
What We Learned In The NICU
As NICU families know, there are a million stories. I hope to share more of those experiences on this page in the year to come! My husband and I learn something new every day but if we could share anything with families who are in the NICU right this minute to make their journey a little easier, we would share the following lessons learned:
1. Accept help when it’s offered; Ask when it’s needed
2. Believe in the power of prayer and positive thoughts
3. Advocate for yourself and your child
4. Know that goodness and kindness are alive and well
5. Take time for yourself
6. Everyone has a story; don’t be quick to judge