May 2019 Mighty Bee

Meet Henry Hackl, our May Mighty Bee! 

Let’s start from the beginning, can you tell us how you learned you were pregnant and your initial reaction?

Kristen (Mom): We knew that we wanted to start a family fairly soon after our September, 2016 wedding and started trying in November. I have a history of Polycystic Ovarian Syndrome and had mentally prepared for the possibility that getting pregnant would not be easy. As luck would have it, we got lucky on the first try! Jim had a hip replacement the week before Thanksgiving, and I was home with him for a few days as he recovered. On Friday morning, I got him settled into a comfortable chair with ice and painkillers and then realized that I had not taken a pregnancy test that morning just to see if we had any luck. After waiting that really long 5 minutes, I told Jim, “Roses are red, violets are blue, starting today, I’m eating for 2!” It took him a minute to realize what was happening and focus on the pregnancy test I was holding.

Jim (Dad): I blame it on the medication after surgery!

K: Ok, that’s fair! I really should have planned better. My husband, less than 48 hours post surgery, jumps up from the armchair with tears of joy in his eyes, and then recoils in pain.

J: Yeah, thanks for making me go through all of that.

K: I have been apologizing for that one ever since that day! We were both over the moon about the news.

When did you find out that things with your pregnancy were not going perfectly? Did you know you would have to spend time in the NICU?

K: I really did have a fairly easy pregnancy. I was nauseous a handful of times and very tired for the first trimester, but never dealt with morning sickness. I fell in December and experienced some bleeding, so the OBGYN had me come in for an early ultrasound at 8 weeks. It turns out that a blood clot had ruptured, and the baby was fine. Because of my age at the time of pregnancy (35), I also saw the doctors at Maternal Fetal Medicine to ensure that our little one was healthy. At 12 weeks, we had genetic testing which came back negative for any chromosomal abnormalities, and the anatomy scan a few weeks after that showed that everything was going well. In March, I went for my monthly check-up and the doctor thought I was measuring a little small, but otherwise, there were no abnormalities.

The week before Easter, I was painting the nursery when I started to feel uncomfortable (Don’t worry, I was using no VOC paints in a well ventilated area!) I checked my pregnancy book from the Mayo Clinic and figured that it was just Braxton Hicks contractions. At 24 weeks, that seemed like a reasonable explanation, so I carried on as usual. Two days later, I was grocery shopping when I started to feel sharp pains that had me doubled over the shopping cart. I went home to find that I was spotting and called the doctor to see what I should do. After the nurse consulted with the doctor on call, they told me to go to Novant Presbyterian to get checked out. Since it was still so early, they wanted me to be Uptown just in case I needed specialized care. In my mind, these were still Braxton Hicks contractions and everything was fine. I left the house with my purse and was sure I would be home in time for dinner.

J: I knew it was serious when they sent us Uptown. It was obvious that my wife was in a lot more pain than she was letting on, so my focus was getting her to the hospital as quickly and safely as I could. In the car, her contractions were coming closer together and she was clearly in a lot of pain. When we got to the hospital, they rushed us upstairs and there were nurses at every turn to make sure we got to the doctor quickly.

K: I thought it was a lot of fuss for Braxton Hicks contractions. After being checked out by the doctor, I was admitted and the craziness really began. Magnesium to try to stop the labor, steroid shots to support our son’s lung development, antibiotics in case I had an infection…it was all a blur. I was adamant that we were not having a baby that day. After all, I was only 24 weeks and 5 days, so that just wasn’t going to happen.

J: As you can tell, Kristen likes to be in control of situations!

K: Ok, maybe a little 🙂 We were fortunate to have an amazing L&D nurse who was also working with a fantastic student nurse who was nearing the end of her rotations. They were both so supportive, kept me as calm as could be expected, and helped me deal with labor pains.

Were you familiar with the NICU process at all or know what to expect?

K: We were not prepared at all. We had scheduled the birth classes for June when we would be closer to our due date of July 30 and had not taken a hospital tour yet. The idea of the NICU never crossed our minds.

Share what you are comfortable with about the delivery of your baby.

K: After a long night of labor, I woke up on Saturday realizing that something was really wrong, and we probably weren’t leaving to go home that afternoon. The Maternal Fetal Medicine specialist came in to do an ultrasound and the reality was terrifying. Our son was breech with the umbilical cord wrapped around his ankle. If we didn’t act soon, things could get very complicated for me and the baby. We put together a plan and determined that an emergency C-section was necessary. I thought we had a few hours before anything would happen, but 20 minutes later, Jim was in the “dad suit” and we were on our way to the operating table. The last things I remember were being terrified of moving during the epidural, our L&D nurse saying a prayer with me, and the doctor saying that it was time to get started. Jim was at my side, and I’m pretty sure I was crying through most of it.

J: When our son was born, a nurse yelled, “Birth!” and I was told to take some pictures quickly. When I sat back down, they whisked him over to the side room where the NICU team was ready to take over. I was able to see him one more time before they took him to the NICU and then went back to Kristen the doctor finished the stitches. Everything happened really fast and before we knew it, we were rolling Kristen into recovery and I went to tell our moms that they had a grandson.

K: The hardest part was getting back to the room and being told I wasn’t going to get to see our son until the next day. He had been born around noon, and it was only 4:00! After all we had been through, that was a tough moment. But after some coaxing, my nurse made arrangements to get us to the NICU so we could see our boy and choose a name for him.

J: We definitely weren’t ready for the first 3 minute hand-washing adventure. It seemed to take forever and then the walk down the hallway to our son’s bed seemed so long.

K: The first time we saw him, we couldn’t believe how small he was. It was surreal and so hard to believe that he was here. We weren’t supposed to have a baby for 3 ½ more months, how was this happening.

J: We had discussed our top name choices but wanted to wait until we saw our son before deciding. He helped us choose his name by throwing his hands up in the air when we whispered ‘Henry’ into his isolette. It was a strong name for our little guy who was going to have to be so tough to survive this ordeal.

When did you get to hold your baby for the first time?

K: Henry was 5 days old the first time I held him. It was the day we were leaving the hospital, and I could NOT keep it together. I was so thankful for Jim. He helped me to navigate getting the pain medication from the pharmacy, listening to the discharge instructions, packing up the room, and preparing to leave. I wasn’t prepared to leave without our son. When we went to see Henry one more time before leaving, our primary nurse found a way to lift the isolette lid and gently place our little boy in my hands. He was so small that he barely filled both of my hands and there were so many tubes, but it was amazing. I remember whispering that I loved him very much and needed him to be a little warrior because Mommy and Daddy wanted to bring him home as soon as possible.

J: It was another week before I got to hold him. He was so fragile but it was the most wonderful feeling to have him in my hands.

I know leaving the hospital without my baby was very hard how did you and your husband cope with having to go home at night, while wanting to be at your baby’s bedside?

K: In a weird way, it helped that we both went back to work after 2 weeks. While it was exhausting to work a full day, go to the hospital for several hours each night, and then go home to try to take care of the house, grocery shopping, and other “life” things, we did our best to make it all happen.

J: Our nurses were instrumental in helping us to keep it together. We called every morning when we woke up to check on Henry’s overnight progress and his primary nurses would text us pictures. We knew that they were taking great care of Henry and we had no doubt they were highly invested in our son’s well-being. When we would get to the hospital in the evenings, they gave us a thorough update and always explained things to us. Some days were harder than others, but looking back, we figured out how to make it work. We didn’t have a choice!

What was the biggest challenge that you had to face with your baby while in the NICU?

J: The surgeries were probably the toughest. Henry had two different bowel perforations with one resulting in an ileostomy procedure. Then he had to have that reversed weeks later so they could reconnect his intestine. Mentally preparing for those days and then seeing our son looking so helpless after the surgery was physically and emotionally exhausting.

K: As the weeks dragged on, Henry struggled to tolerate feedings. We were starting to discuss the possibility of a G-tube if he couldn’t eat more and gain some weight. All of a sudden, it just started clicking with him and we were home within 3 weeks. He just needed to do things on his own time, but when you are so close to the finish line, it seems harder to keep going “just one more day.”

Did you ever just get mad during the process? How did you cope with the roller-coaster of emotions that took place in the NICU?

K: I don’t know if “mad” is the right word, but there were definitely days that I felt like it wasn’t fair. I struggled with feeling like I was at fault for Henry’s early delivery.

J: Which I kept reminding her was totally ridiculous.

K: Yes, I know! But you can’t understand why your child has to fight so hard for every little success when there are dozens of healthy babies leaving the hospital each day. But you ride the roller coaster because you don’t have any other choice. And you try to focus on the little wins each day so the scary moments aren’t so hard to manage. My first Mother’s Day was absolutely AWFUL and I sobbed for most of my visit with Henry. We had just gotten settled in for some kangaroo time and he started a long series of bradycardias. We did not get the chance to cuddle and watching him struggle to breathe was so hard. I felt robbed and had a hard time getting over that one. (But my second Mother’s Day was AMAZING!!!!)

J: We tried to remember all the positive parts of the journey. Henry didn’t have any brain bleeds, he was clear of ROP after the second exam, he worked his way through several ventilators until he was on light oxygen support, and the list continues.

K: We made it our mission to always walk into that NICU with the mindset that Henry was going to be a healthy, happy, thriving little boy. We didn’t want him to feel like we had doubts or to sense negativity. I found that reading him bedtime stories and saying bedtime prayers with him helped me to feel like we had a little slice of “normal” in our life.

What were the first days like having everyone home under the same roof, any pets that had to get used to a new addition?

K: I remember feeling like things were finally calm. Having Henry home meant we could start our new normal.

J: We had two cats who were somewhat curious about this squirmy little thing but they didn’t seem too bothered by the baby.

Did you have a lot of fears or anxieties regarding germs once you brought your baby home?

K: We came home right before the start of RSV season so we were on lockdown from August until April. Henry really didn’t go anywhere and we were super strict with who was allowed at the house. Crazy handwashing, wearing face masks, and lots of sanitizer became so normal that it was hard to break out of those habits when we were finally able to allow a little germ exposure!

J: It beats the alternative of having to go back to the hospital though, so we managed. We learned how to do everything in shifts–running errands and going to Church used to be so easy, but now it required one of us to be home with Henry while the other took care of business. Anyone that did come close to Henry was met with sanitizer or a reminder to wash their hands, but we avoided RSV, so it was definitely worth it!

What does a typical day with your baby look like now?

J: BUSY! He goes to daycare while we are at work and when we come home, it is a lot of play time, dinner, and bedtime routines. He is currently into making music with any and all toys. He loves to drum on cereal boxes, band his plastic bowls together, and loves to dance to any toys that make music. He is working with a physical therapist twice a month to stretch and strengthen and is getting stronger every day. He pulls up on furniture, crawls over obstacles, and scoots all around the house. We enjoy seeing him be so active.

K: And don’t forget eating! Henry LOVES to eat! It makes it easy to forget the time in the hospital when he would not take a bottle. Henry is smiley and giggly most of the time and we love to do things to make him laugh.

Any advice you would give another family going through the NICU? Anything that really helped you get through the experience?

K: Oh goodness, the books we could write if we only had time! I guess my best advice is to find your support system and lean on them when you feel like you can’t do this another day. I knew there was no way we would be able to keep everyone informed through texts or emails because I come from a huge family and we have a pretty extensive friend group. I used Facebook as a means of mass communication to share Henry’s journey. Each week, I posted a letter from Henry about his week. We shared the medical procedures he had, the milestones he hit, and pictures of his week. It turned into a great keepsake of our journey and I am working on making it into a photo book so he will have it when he gets older. This also expanded our prayer network. I often joked that Henry had more people praying for him or sending him good energy than people we actually knew!

J: Also, trust your medical team. Your doctors and nurses are doing everything they can for your child and they want the same outcomes you do. Build a good relationship with them because they become like family. Ask lots of questions when you feel unsure and share what you are thinking and feeling so the staff can help alleviate concerns. Accept your reality and do your best to manage it. Dishes may not get washed, laundry will get behind, and you will eat out more often just for convenience, but that is your normal for now.

K: My last piece of advice is to recognize your child’s unique journey. While there are a lot of great organizations that can give you helpful information, there are a lot of blogs and stories on the Internet that can make you more fearful. Just because another family went through it a certain way or a specific course of action helped or didn’t help their little one does not mean that you will experience the same thing in the same way. Stay in the present and make decisions for your son or daughter with the information from your medical team. That is the best you can do as a parent!