Welcome to the NICU Life

My pregnancy was difficult to say the least. I was on bed rest for 4 months and I spent the last two weeks prior to my twins' birth in the hospital. I had a planned C-section, however we specifically chose the hospital where my twins were born because they had a Level III NICU. 

A Level III NICU (Neonatal Intensive Care Unit) is a specialized hospital unit that provides the highest level of care for premature and critically ill newborns. Here's a breakdown of what defines a Level III NICU:

Capabilities:

• Comprehensive Care: They offer a wide range of services for infants born at any gestational age and with various medical conditions. This includes:

  • Life support: Advanced respiratory support, including mechanical ventilation.
  • Surgery: Minor surgical procedures on-site.
  • Imaging: Access to advanced imaging techniques like X-rays, ultrasounds, and MRIs.
  • Specialized treatments: Hypothermia therapy for birth asphyxia, and ECMO (extracorporeal membrane oxygenation) in some cases.

• Specialized Staff: A Level III NICU has a highly trained team, including:

  • Neonatologists: Doctors specializing in newborn care.
  • Neonatal Nurses: Nurses with advanced training in caring for critically ill newborns.
  • Respiratory Therapists: Experts in managing breathing problems.
  • Pharmacists: Specializing in neonatal medications.
  • Dietitians: Providing nutritional support for premature infants.
  • Developmental Specialists: To support the baby's growth and development.

• Access to Sub-specialists: Level III NICUs have close relationships with pediatric sub-specialists, such as:

  • Pediatric Surgeons: For complex surgical needs.
  • Cardiologists: For heart conditions.
  • Neurologists: For brain and nervous system issues.

Who Needs a Level III NICU?

• Premature infants: Born before 32 weeks of gestation.
• Very low birth weight infants: Weighing less than 1,500 grams (3.3 pounds).
• Infants with critical illness: Such as respiratory distress syndrome, sepsis, or congenital anomalies.

In Summary:

A Level III NICU is equipped to provide the most advanced life-saving care for the smallest and sickest newborns. They offer a comprehensive range of services, specialized staff, and access to pediatric sub-specialists, ensuring the best possible outcomes for these vulnerable infants.

Giving birth at a facility with a Level III NICU was important because my daughter was projected to be quite small, under 4 lbs. At birth she was exactly 4 lbs. and rapidly lost weight after birth. Her twin brother was a little over 5 lbs. Both of my twins ended up in the NICU, my daughter due to respiratory distress and my son due to inability to regulate his body temperature. 

So rewind just a little bit, I knew that I was going to have a C-section basically from the time that my OBGYN confirmed the pregnancy. Due to having previously having abdominal surgery, she was unwilling to risk a vaginal birth. I struggled with my blood pressure during the entire pregnancy and developed congestive heart failure. So I was considered high risk all around.

Initially, our goal was for me to make it to 28 weeks and then schedule the C-section. However, I made it to 28 weeks and was doing relatively well so my doctor said let's keep going as long as we can. I had to see the doctor 2 to 3 times a week. So at week 32 I went in for an ultrasound. I kept getting dizzy during the ultrasound when they would have me lay down so it took longer than normal. When it was time for me to leave, I walked out of the room and almost made it out of the door, before I fell to the ground. I passed out. When I came to, I thought I was ok so I tried to get up but I was not allowed to get up. I was promptly put in a wheelchair and wheeled over to the hospital, which is where I stayed until I gave birth at week 35. 

Following my pattern, the procedure itself wasn't difficult, however my body did not want to cooperate during the procedure. After receiving the epidural, I passed out and was in and out of consciousness during the procedure. My blood pressure was continually fluctuating, but both of my twins were delivered without incident. I got to hold them as we were wheeled back to the room. They stayed in the room with me for a few minutes before going to the nursery. I then fell asleep and didn't wake until the next morning. Shortly after arriving at the nursery both of the twins were moved to the NICU. 

When I woke up the next morning I was told that my twins were in the NICU and asked if I wanted to go and visit them. I of course said yes. When I arrived in the NICU things couldn't have been different for my twins. I was able to hold my son and do skin to skin with him. I was able to nurse him and be close to him. My daughter however, I was not able to hold her or even touch her. She was in an isolette and I was not allowed to hold her because she had a central line and bi-pap. 

When my daughter was delivered the nurse came over to me and started listing to me the deformities that my daughter had and I just cut her off, and asked "Is she breathing?" The nurse responded yes, so I asked to see my baby. Anything else we could deal with later. In that moment I just wanted to see my baby. So I was full aware that my baby girl was probably going to have some difficulties.

So after I was discharged I spent every day at the NICU with the twins. I sat with them all day until about 9 pm when I would go home. After 2 weeks my son was discharged from the NICU, which I was so grateful for, but at the same time was one of the most heartbreaking moments for me. I was so happy to take him home, but I was also sad because his sister was still in the NICU. 

After my son was discharged I continued to spend my days at the NICU with my daughter and the nights at home with my son. It took about two and a half weeks for my daughter to receive her diagnosis. She was diagnosed with semi-lobar holoprosencephaly. 

So what is semi-lobar holoprosencephaly?

Semi-lobar holoprosencephaly is a rare birth defect that affects brain development. Here's a breakdown of what it means:

Holoprosencephaly (HPE)

• Normally, during fetal development, the brain divides into two distinct halves (hemispheres).
• In holoprosencephaly, this separation doesn't happen completely, leading to various neurological and physical abnormalities.

Semi-lobar HPE

• Semi-lobar HPE represents a moderate form of holoprosencephaly.
• The brain's hemispheres partially divide, but there's still significant fusion, particularly in the front and middle parts of the brain.
• The back part of the brain may show some separation.

Impact

Semi-lobar holoprosencephaly can cause a range of issues, including:

• Brain function: Cognitive delays, seizures, and motor impairments are common.
• Facial features: Eyes may be closely spaced, or there may be a single eye or no eyes. The nose can be malformed, and cleft lip or palate may occur.
• Other problems: Hormone imbalances, difficulty swallowing, and sleep disturbances are possible.

Diagnosis

Doctors often identify semilobar holoprosencephaly through imaging studies like MRI or ultrasound during pregnancy or after birth.

After receiving the diagnosis my husband immediately went to Google and began trying to find more and more information. I however, just needed some time to take it all in. I began thinking about how could best help my daughter and give her the best life possible. The future was uncertain and I was ok with that. Even today, I don't know what my daughter is going to be able to do do, but I am so proud of all of the things that she has accomplished so far. 

So, my daughter spent another week in the Level III NICU and then was transferred to a Level II NICU as she was removed from the bi-pap and her central line was removed. Once she was moved to the Level II NICU that is when reality really began to sink in. This is when the focus was on her coming home. I began to realize the level of care that she was going to require and all of the new things that I was going to have to learn. So I asked as many questions as I could and began my journey as primary caretaker to my medically complex child.

If there is one thing that I learned in the NICU is that life is unpredictable and you have to learn to be flexible. If you take things one day at a time, you will get there. 

I hope that this story can help ease the minds of someone who is expecting to have a child with complex needs and I hope that some of you who have had similar experiences can relate to my experience. Either way, I would love to hear from you, send me an email or leave me a comment. In the meantime, take care of yourself and take care of your loved one.

For more information about Holoprosencephaly visit the following websites:

• Holoprosencephaly - StatPearls - NCBI Bookshelf
• Holoprosencephaly | Children's Hospital Colorado
• Holoprosencephaly (HPE): What It Is, Causes & Types - Cleveland Clinic
• Holoprosencephaly - MN Dept. of Health

Be well, 

Kara

kara@beyondthewallslifeunscripted.com

Caretaker Beyond the Walls