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Challenge: NICU Parenting

Amazing Maisie

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After experiencing two miscarriages, my husband and I were scared and excited for our third pregnancy. We finally got to hear a heartbeat and my tummy slowly began to grow.

Then late one January evening I woke to find some spotting had occurred. I waited until early morning to see if it had gone away, only to still see spotting. I woke my husband and he asked what I wanted to do. So, we decided to take out our small Doppler to see if we could find a heartbeat at home...and we did. I quickly called my mom, who is a Registered Nurse, and she encouraged me to go into the E.R. and not my OBGYNs office as I had planned. Once I was at the hospital and checked into the E.R., I was sent up to Labor and Delivery since I was 23 weeks and 2 days into my pregnancy and passed what is considered a viable pregnancy. During the exam, the OBGYN stopped the exam right away. She informed me that she could see the sack that my baby was in coming through my cervix. I was taken by ambulance to a local hospital that is connected to a Children's Hospital. Once admitted I was told I would be on bed rest until I deliver. My due date was May 9th.

During my time on bed rest, I was inverted as an effort to get the sack to go back into my cervix, received acupuncture treatments and met with the NICU staff to learn about what to expect should the baby come sooner than later. While meeting with the NICU staff we also received information on outcomes for babies born between 23 and 26 weeks. This is where it all became 'real'. Once I heard the statistics of what we could be facing it was my job to keep this baby in as along as possible.

Below are some of the statistics (based on 2004-2013 outcomes at a local Minneapolis hospital) for babies born at 24 weeks old, the gestation our daughter was when she was delivered.

  • 70-80% Survival Rate
  • 20% chance of ROP (retinopathy of prematurity), a potentially blinding eye disorder
  • Less than 60% of babies born at 24 weeks have normal developmental outcomes

I made it five days before having an emergency C-section to deliver my daughter at exactly 24 weeks. She weighed1lb 6oz and was 12 ½” long

While most new mothers remember when the new baby was placed on the mother’s chest, I remember the first time my husband wheeled me down the long hallway leading to the NICU. This hallway is lined with various success stories of premature babies and my eyes instantly welled up…knowing that there was hope for our daughter.

As the days passed, we learned the routines of NICU life and slowly became familiar with frequently used terms by the staff and what the various beeps of the machines meant. We were lucky enough to have numerous nurses sign on to be a primary nurse for our daughter. This meant that they would be taking care of our daughter during their assigned shifts. What I didn’t realize is that these nurses would become teachers, counselors, advocates, quiet angels and like a second family. These nurses were the ones to teach us how to touch our fragile baby, turn her over, feed her breast milk off a Q-tip, change her tiny diaper, take her temperature, bathe her, celebrate each milestone, tell us it was OK to take some time away, and be the ones to first ask us if we were ready to hold our child.

8 days…that is how long I waited to hold my baby. When the moment finally arrived, I felt a rush of emotions like I had never felt before. I quickly got ready for my first Kangaroo Time (skin to skin) with my daughter. While I waited patiently, I watched the nurse gently move my most precious belonging just so and get everything right for an easy transition from isolette to the comfort of my bare chest. Once on my chest, a couple of nurses moved my daughter into position, being cautious of any cord or tube that might get in our way and there, with sweaty palms and tears in my eyes, I held my daughter for the first time.

After I was discharged, we were lucky enough to stay at the Ronald McDonald House inside the hospital for a couple of nights. This facility is on the same floor as the NICU and allowed us to visit our daughter at all hours, gave us a comfortable bed, warm shower, access to a stocked pantry and home cooked meals at night.

However, when the time came that we would have to leave the hospital without our daughter, we realized this was a reality that most new parents don’t face and one that didn’t cross our minds until it was time to go home. I remember looking at my husband and thinking, ‘How are we just going to leave without her’? The nurses did a great job assuring us that everything would be OK and thankfully the hospital offered closed circuit video cameras that we could access from our computers at home and see our daughter whenever we wanted. This helped offer peace of mind but it was still difficult to drive home without our daughter.

I took my 8 weeks of maternity leave and spent every day down at the hospital. It was during this time that I truly got to know our daughters daytime primary nurse, Mary. She would give me updates as soon as I would arrive, ask me how pumping was going and cheer on my smallest victory with my milk production, ask if I wanted to help with cares; temperature, diaper changes and oral cares (Milk on a Q-tip for my daughter to suck on), talk gently to my daughter and remind me to visit the bathroom before Kangaroo Time so I was able to hold her longer and not have to worry about a full bladder.

I spent as much time as possible learning everything I could about caring for our daughter. Hand hygiene became more important than ever, I was pumping every 3-4 hours to supply milk for her feedings, reading books to her, doing Kangaroo Time with her whenever possible, watching how the nurses would care for her, watching her have eye exams to check for ROP, helping with baths, adjusting her CPAP mask as necessary, advocating for her when necessary and learning to trust the doctors and nurses caring for our daughter.

I was lucky enough to receive additional parental leave through my employer and intermittently went back to my office job from 8-5 and then I would go to the hospital to my ‘other job’. As the weeks passed and after speaking with the doctors and staff at the hospital is was highly suggested that we keep our daughter out of daycare for her first year if possible. Due to her extreme prematurity, our daughter’s immune system was weakened and she was at higher risk for contracting RSV and ending back up in the hospital. Besides reviewing our finances, there was little thought on our part regarding this decision and I ended up leaving my Executive Admin position to stay home with our daughter once she was discharged.

Our daughter, Maisie, spent 106 days in the hospital before being discharged. We finally got to leave the hospital as a family on May 2nd, 2015, one week before her due date. What I didn’t realize is how difficult it would be to leave and how scared I was to take her home. Now we had to leave the nurses, doctors and staff who had taken such great care of our daughter and us during her time at the hospital.

Maisie will be three in January, has passed all follow up appointments for vision and hearing, she is developmentally on track with other children her age born at full term, loves to be outside, has the kindest heart and is truly amazing.

As a doctor once said, no NICU stay is ever easy but ours was mild compared to other cases he had seen for a 24 week old Micro Preemie. We know how lucky we are and to have had a pretty steady NICU stay without many ups and downs, but those days and experiences have changed us forever.

My advice for anyone in the NICU is to take photos, capture videos, start a journal, get to know the staff, reach out for support, take people up on any help they offer, check your hospital for support groups, advocate for your child if you feel its necessary, read to them, snuggle them as much as possible and most importantly remember to take some time for you (even if its only a couple hours).


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