June 2017 Mighty Bee Jane Larson Horstman

I’m especially excited to introduce this month’s Mighty Bee, Jane Larson Hortstman. While we traditionally share families that have received Bee Mighty grants, this family is quite an exception for many reasons.

I met this Mighty Momma, then Jordan Phipps, twenty years ago in Charlotte. Had you asked either of us if we were prepared for our NICU journey ahead, we both would have said, “What is a NICU?”

Jordan and her husband, Jake, have been a tremendous support to Bee Mighty since the very beginning. Jordan’s warm heart and welcoming smile, with a knowing tear would appear with every opportunity, eager to get involved and give back.

Most recently, Jordan’s husband, Jake, has joined the Bee Mighty Board in an effort to further support Bee Mighty’s cause to help NICU families.

It is such an honor to introduce you to June’s Mighty Bee:

Mighty Mom Interview – June 2017

Jordan Horstman – Mom to Mighty Jane Larson (8) and Stewart (5)

Jordan, I’m going to start at the very beginning. Tell us about finding out you were pregnant for the first time.  How was your overall pregnancy?

  • My pregnancy was a long journey.  This might be more than you want to know, but it is part of our story! We were told that it was impossible for us to get pregnant on our own. They started us with IUI and we quickly were told that we had less than a 2% chance of conceiving through IUI so they moved us to IVF. Things seemed to be going fine (through all the medication, ultrasounds, shots, etc.) until the retrieval. My retrieval yielded 48 eggs. I don’t know how familiar you are with IVF, but this is unheard of. I must have broken the hospital record. I felt totally fine until early the next morning, when I woke up feeling dizzy, nauseous, and fainted on the bathroom floor. My Reproductive Endocrinologist quickly admitted me to the hospital with Severe Ovarian Hyperstimulation Syndrome. Little did we know I would spend the next 9 days in the hospital experiencing constant nausea and extreme discomfort. My ovaries enlarged to 6 times their normal size and continuously excreted acid into my body. I gained 35 pounds in acid the first night in the hospital and was in unspeakable pain. My organs were so compacted that it was a challenge just to breathe. I had 8 paracentesises performed over the course of those 9 days in the hospital. They drained several liters of acid from my abdomen. It was the only thing that could provide relief. Unfortunately, the relief was minimal and short-lived. Each time, within hours I was begging to be rolled back down to the Operating Room to repeat the process. Fluid developed on my lungs, and there was concern that my kidneys were failing. While there was true concern for my survival during this scary time, at the heart of it all was my deep desire to be a mother. Though we had started with 48 eggs, just 5 of them fertilized to embryos and in the end only 4 were viable. By the grace of God, we had these 4 little chances of hope!

A few months later, we transferred 2 of the embryos, which were successful, but ended in miscarriage.  A couple of months later, we had transferred our 2 final embryos. I was pregnant with twins! Baby B was strong and healthy, but we lost Baby A at 9 ½ weeks. At 30 weeks, I was put on bedrest due to a high volume of amniotic fluid and the possibility of duodenal atresia. Our hope and constant prayer was for baby to stay safe in me until at least the 34 week mark. At this point we knew we wouldn’t be able to bring a strong and healthy full-term baby home, but we had no idea the impact the NICU would soon play in our lives. When we were close to 34 weeks, my breathing became labored so they performed an amnio reduction to relieve the pressure. My water broke the day before our 34 week mark and I had an emergency c-section.

At what point did things begin to go awry?  How familiar were you at that time with the Neonatal Intensive Care Unit (NICU) or anyone having a preemie?

  • We knew at 30 weeks that there was a very good chance our baby had duodenal atresia, that she would likely be a preemie, and that she would need surgery quickly. Though there is no real way to prepare yourself for the NICU, we had dear friends whose twins had recently been born as preemies and we were in close touch with them. However, I was on bedrest and unable to visit them in the NICU.

Please share whatever you are comfortable with about Jane Larson’s birth.

  • Jane Larson’s lungs were not fully developed when she was born, making it impossible for her to breathe on her own, so she was immediately put on a ventilator. Her lungs caught up quickly and she was able to have duodenal atresia surgery on day 2. For me, this was the hardest day of all. This was the point where the focus had transferred from maintaining my health in the effort to keeping our unborn baby safe; to her suddenly being on her own leaving me feeling helpless. Along with helpless came fearful, confused, panicked, and wanting guarantees yet having to trust. It is indescribably scary to think about your teeny tiny newborn undergoing major surgery.

When did you have a chance to meet and hold your baby?

  • Jane Larson had been born at 3am. A few hours later, they rolled my bed into the NICU where I was able to see her settled in her isolette. That evening I held her for the first time. Though brief, the feeling of finally holding her was nothing short of a tangible miracle. She had UAC and UVC lines and they do not typically allow for these critical babies to be held, but they knew that her surgery was coming and that it would be days before I could hold her again so they made an exception. We would soon discover that this gift was one of the many ways the NICU staff would provide us with both empathy and loving kindness. Thankfully, the surgery was successful, yet we knew she had a long road ahead. Jane Larson was returned to the ventilator and it felt like we were starting all over again.

If you’re comfortable, tell us about your experience in the NICU. How did you and  your husband cope with having to go home at night, while wanting to be at Jane Larson’s bedside?

  • I believe all stays in the NICU are extremely scary and stressful. Typically there is a constant stream of 3 steps forward followed by 2 steps back. For example, feeding 6mL of milk was a huge milestone for Jane Larson, but shortly after she began throwing up blood. Jane Larson recovered quicker than expected from her GI surgery, but preemie issues, such as bradycardias, kept her there for a total of 3 weeks. The days in the NICU are long, but the nights are longer! The first 5 nights I had a room in the hospital, but really didn’t spend much time in it. I was up walking by the afternoon of my c-section and was by Jane Larson’s isolette around the clock. They do make you leave during shift changes at 7am and 7pm, which would force me to take a break. Once I was discharged and “home” I still spent all my time in the NICU. Jake would peel me away from her isolette around 2am and make me go, in hopes that I would rest. I’m sure I drove the nurses crazy all night because I called her pod phone to check on her several times during each 4 hour period that I was supposed to be sleeping. By 6am I was always back with my baby girl. Jane Larson was our first baby, which enabled me to focus all of my time and attention on her. I can’t imagine what it’s like for parents who have older children who need them as well.

If I recall, you actually provided my family with a meal during our son’s NICU stay.  (Thank you!) What other kinds of support did you find helpful from friends and family, while JL was in the NICU?

  • Since we didn’t have other children at home and I clearly spent ALL my time in the NICU, I found snacks, meals, and visits to the NICU to be the most meaningful. If it was between eating or spending more time by Jane Larson’s isolette, you can bet that time by her isolette always won!

Do you have any advice for other Moms that are just beginning their journey with a preemie or may log weeks/months in the NICU?

  • Get to know your NICU nurses! They are such caring, loving, smart, and capable individuals. They are the eyes, ears, and love for your baby during the hours when you aren’t there. One of Jane Larson’s primary nurses, Sara, is now one of my dearest friends. She also happens to be the one who wheeled Jane Larson’s isolette down to the Operating Room for surgery. She was there for her every step of the way and remains a loving presence in her life. The NICU nurses do what they do because they genuinely care. To this day we remain in contact with each of them!

Be honest. Did you ever just get mad? (I remember screaming in the parking garage one time). I’m curious if any other Mom ever had ‘that’ WHY ME? moment?

  • It sounds crazy, but since Jane Larson was our first baby I didn’t know what normal looked like. I think that helped me. I couldn’t imagine having a healthy full-term baby and knowing the difference before our experience with Jane Larson. It would have been so much harder. I don’t remember screaming, but I did wonder “why me”. From the moment we learned that getting pregnant would be a challenge, we seemed to fall in the 1-2% category for everything…. good or bad (fertility, severe OHSS, maintaining pregnancies, duodenal atresia, the list goes on).

This month we will celebrate Father’s Day.  Will you ask your husband what helped him cope with a baby in the NICU and a wife overwhelmed with worry?

  • Jake says that the amazingly capable NICU staff, and the unbelievable family support that we had, really helped him. It also helped that his boss and dear friend had twins in the NICU at the same time. He was given a level of empathy that dads may not always experience. We all had a big supportive NICU family in so many ways!

Jordan, tell us about when you first learned you may be able to take Jane Larson home.  Was this terrifying or were you beyond ready?

  • The thought of taking Jane Larson home was totally terrifying! They don’t give you much notice. One day we found out that Jane Larson was scheduled to come home the next day if she passed her carseat test. We were excited and scared, both at the same time. She then FAILED her carseat test, which means that she had a bradycardia when they put her in the carseat. They would need to retest her 24 hours later, which delayed her discharge another day. The fact that she had a “brady” (as it’s commonly referred to in the NICU) when they put her in her carseat was absolutely TERRIFYING to me; because when she had bradys in the NICU her machines alerted the nurses and they would immediately revive her. If it was even possible, my fears further increased following the carseat brady. I was scared for her to leave the NICU, to the point that I was begging them to let us stay. I was so fearful that something might happen to her under my watch. There were well-trained doctors and nurses in the NICU caring for her and I was petrified to leave and be the one in charge of my fragile baby. Those first 3 weeks were long and painful, but let’s be honest, I might have stayed until she turned a year old if they had let me!

It’s interesting to consider the contrast between my emotions and Jake’s perspective at that time. He remembers just wanting to get our baby home and to move forward and I remember the struggle I felt feeling this from him. It wasn’t until we were out the door when he realized it was up to the two of us to care for our baby and that her fragile life was now in our inexperienced hands. At that point he understood my fear. Looking back, our many struggles have brought us such unexpected blessings, and served to strengthen both our marriage and our faith. We have so much to be grateful for.

Tell us about JL’s homecoming! What was it like to all be under one roof?! How did you (quietly) celebrate?!

Ha! Quiet is definitely not how you would have described our house once Jane Larson was home. We were told that JL was the easiest baby in the NICU. She had never cried. Our Primary NICU night nurse, Meredith, always told us that she was the BEST baby. Following our first night home, Meredith dropped by to check on us at 8:00 that morning….Jane Larson had been screaming for hours and I was a complete mess! I’m not sure what happened to my “quiet baby”?! Jane Larson spent the next 2 months crying all night, each night. I don’t know if it was colic, or if she was just so used to and missing the constant sounds and action in the NICU.  Although it was challenging, I remember crying tears of joy often during that first year. She was our little miracle baby….she was home, healthy, and so very precious!! My heart was exploding with love for her and still is!

Do you remember the first 6 months to a year? Were you in isolation? How did you handle visitors?

  • As post NICU experiences go, I consider ours to be at the easier end of the spectrum (thankfully!). Jane Larson was born in April so it was nice that we had the summer months and pretty weather ahead of us. We spent a lot of time on our patio and being outside. I had to be very careful about visitors washing their hands upon entering our house. We didn’t take her to public places the first few months either. A counselor visited us every few weeks throughout her first 2 years to ensure that she was hitting all milestones on time.

I talk to Moms all the time about trying for another baby after having a NICU baby.  You have the beautiful Stewart! Were you terrified that history would repeat itself again?

  • Yes! Terrified in so many ways! We really wanted another child, but I feared that it really might kill me this time. During those 9 days in the hospital with severe OHSS, I truly thought I might not survive. We began discussing options with our Reproductive Endocrinologist. Our concerns ran the gamut: Is IVF even an option? If so, how do we prevent OHSS this time? Should we think about adoption? What options do we have? My case had been so extreme that the fertility practice had changed their protocol as a result of my case. They knew my history and were prepared to be extremely conservative with any medication, but my doctor still couldn’t guarantee that we could avoid a repeat. We didn’t know how my body might react, and the risk of my body overreacting to the medications remained high. My doctor started talking with two Reproductive Endocrinologists who specialize in non-medicated IVF cycles; one in Virginia and the other in California. We seriously considered this option, however it would require us to move to their location for a few months. Additionally, the chance of conceiving through a non-mediated cycle declines drastically. If I remember correctly, it drops from 50% to 25%. I didn’t know what to do. We had a baby at home. I prayed and prayed about it. My biggest prayer to God was that I didn’t need a little tap on the shoulder this time….I needed a big black and white answer on whether to try IVF again or not. He gave me my answer. We unexpectedly got pregnant on our own! We were shocked, excited, and incredibly grateful. A short few weeks later, I miscarried and had a D&E, which showed that it had been a healthy baby with no chromosome issues. I was disappointed of course, but I couldn’t be that upset because this was the answer I had prayed for. This was God telling me, “hold tight, I’ve got this.” Though I was still uncertain as to exactly what that meant (adoption, no more children, or the possibility of a natural pregnancy), I found peace in trusting that it was His plan. We took a break from IVF conversations. I then became pregnant!!  Though it was a high risk pregnancy and I was monitored closely due to my past, I had the most normal pregnancy and carried Stewart until the day before my scheduled c-section. Of course I was a wreck throughout the pregnancy thinking that something was going to happen, but we were blessed with a healthy baby girl that I immediately got to hold in my arms. I remember questioning the nurses, asking if they were sure it was ok to hold her already!

My son is just starting to ask to see his baby book and curious of photos of himself. They aren’t pretty. He is covered in wires and tape and equipment. At age 8, what do you tell JL about her miraculous birth?

  • Jane Larson has seen most of the pictures from the NICU. She talks about her surgery and is proud of her scar. She knows most of her nurses. However, she doesn’t know all the details of our journey. We haven’t mentioned that she was a twin….but she has made several comments through the years that make me think deep down she somehow knows.

You have been such a tremendous supporter of Bee Mighty – from the very beginning! You actually ‘got it’ long before I did and continue to show up and support Bee Mighty year after year. Tell us why Bee Mighty is important to your family.

  • We were incredibly blessed to have Jane Larson’s fabulous team of NICU doctors and nurses, who gave her the highest level of care and support. Our baby got to come home, but sadly that is not always the case. We knew we wanted to give back to the NICU in some way, but at the time had no idea how to go about it. We were lucky that JL didn’t require additional equipment or therapy following her time in the NICU. However, had she needed something, we would have assumed that insurance would cover any medical needs. It was really after your son Shaw was born that I realized this is not the case. So many preemies fall through the cracks. Insurance doesn’t cover the equipment and/or therapy they desperately need in order to thrive, or even just survive. It is heart wrenching to imagine how helpless and scared their parents must feel. Our system is broken. The fact that some NICU families would be better off having Medicaid than with private insurance is just plain wrong. It’s angering to think of all the preemies missing these opportunities due to private insurance limitations. I am in awe of all you have done, Candace! You are a hero to countless families and truly amazing in SO many ways!

My favorite question, tell us about the girls and your lives ‘on the other side’ today!!!

  • Jane Larson just turned 8, will be in the 2nd grade, and loves school! She likes art, ballet, swimming, and skiing. She enjoys playing outside, adores her dolls, loves cooking, and spending time with her friends and her little sister. She is a kind, loyal, and thoughtful little girl who is often described as an old soul. She studies people and often seems to ‘get’ things that her peers may not. Jane Larson is very much a rule follower! She recently described herself as a “girly-girl”…..and she SO is! She says she wants to be a mommy, a teacher, and a party planner when she grows up! She already plans parties regularly at our house! Stewart will turn 6 at the end of July and begins Kindergarten this Fall! The girls are excited to be at the same school and look forward to riding the bus together; though protective sister JL says she will worry about Stewart at school. Stewart likes singing, dancing, music, and playing outside. She loves being with her friends, and playing with her big sister. She has a deep love for all animals! She wants to be a singer, a mailman, and a veterinarian. If there is a rule, Stewart will probably push it to it’s limits! She is witty, kind, spunky, and very generous. She is always the first to give in and would give the shirt off her back to Jane Larson any day. Though some days they fight like cats and dogs, they really do adore each other! It’s incredible to witness the bond and love that they share! Oh how I love my girls!!

Please feel free to share any other thoughts/inspirations you have that you feel may impact another family walking in your shoes. For those of us with bigger kids, we are the hope they will look to.  Please feel free to share whatever you think someone may benefit from.

  • My faith in God played and continues to play a huge part in my life! I was in constant prayer throughout our time in the NICU. My advice would be to lean on your faith, take one day at a time, and to celebrate each step forward, while trying your best not to be discouraged by the “steps back” that will inevitably occur. Ask questions of your doctors and nurses. They are there to teach you how to care for your fragile little miracle and they are always willing to help in any way. They are God’s special angels here on Earth.