Julia Lacy is a multitasking, reproductive rights championing, constantly breastfeeding, co-op volunteering, certified birth doula and mom to three little ones ages 5, 3 and 4 months.

 

My son was born at 35 weeks pregnant 3.5 years ago. It was a complete shock as I'd carried my daughter to 39+ weeks, and despite my very active and irritable uterus, no one expected a spontaneous rupture of membranes at 35 weeks. In fact, I'd had a negative fetal fibronectin test just days before, which is supposed to be somewhere around 98% accurate. (I'd had this test done because of the many frequent braxton hicks contractions I'd been having.) I'd even had my cervix checked the day before my water broke--it was completely closed and not at all effaced. So needless to say, we were very surprised. Further, when I arrived at the hospital, i was continually reassured by the staff (as much as they could reassure someone when they didn't know for sure what the outcome would be) that "most 35 weekers are fine" and that he'd probably just need a couple hours of observation. When he was born and was in obvious respiratory distress, it was very surprising.

 

What was your reaction upon hearing or realizing that your child would go to the NICU? How did your reaction/emotions change as time went on with your child there? 

 

One of my biggest regrets about his story was that when he was admitted to the NICU, I felt almost nothing at all. I was exhausted after having been awake for 36+ hours and laboring all night on pitocin without pain medication. A couple hours after the birth, once it set in that he was here and yet away from me and in the NICU, I demanded to go see him. I remember a doctor telling me very seriously that his condition was pretty serious and they needed to intubate him. He said my son's lungs were "acting like a 28 weeker, not a 35 weeker" and I just sat there in shock, wondering why everyone was treating me so delicately. I honestly felt so disconnected from the whole morning. It wasn't until I was discharged without my baby, went home (to my 23-month toddler), and woke up the next morning that I started to get upset. It was unsettling to say the least to have my two babies in different places. I felt frantic every day to get to the hospital but when I was there I was frantic for my toddler, who'd never spent a day or night without me. As the days went on and we realized it wouldn't be a quick observation and reality set in, I felt like I was unwinding more and more. It wasn't until my son was a week old and he finally got to nurse that I started feeling like I just couldn't handle being away from him a minute longer. We were lucky--Dash was only in the NICU for two weeks - but those two weeks were critically defining in my life (and his). My postpartum anxiety went undiagnosed but stayed with me for years.

 

What do you wish you had known about prematurity or the NICU? What do you wish more people would know? 

 

Prematurity can happen to anyone and the NICU can be a warm, comforting place. We loved our NICU--the staff was wonderful and we felt so taken care of. It was upsetting to be sure, but we felt certain he was in the best place he could be. I also wish people realized how even a "short" stay can be traumatic for both mom and baby. I felt like I was compensating for my initial detachment and his stay in how I parented him for years. I also wish people realized how serious it is that full term is 39 weeks - not 37. Babies do a lot of developing the last couple of weeks in utero and that time is critical for lung and immune development--both which my son likely still struggles with today. He is "healthy" for sure, but he does have an asthma diagnosis now which lands him in the pediatrician almost every time he gets sick. We have three inhalers we use during cold and flu season and it's a daily part of our life, most likely as a result of his premature birth.

 

What did you wish people had said to you upon learning about your child in the NICU? What was helpful or not helpful? 

 

I wish people had said "congratulations" more and "I'll bring you a meal." It felt like we hadn't even had a baby--no baby at home, no visitors, few cards. I wish people hadn't brushed off the severity of 35 weeks--yes, he was no micropreemie, and yes, he was a bruiser (6 lbs 7 ounces), but I felt people didn't understand that he was still very sick. Hearing "oh, he'll be out in no time" doesn't help because 1) no one knows that for sure and 2) the fact that he was there was really hard.

 

What did you wish people had done for you? What was helpful or not helpful for your family?

 

Like I said above, I felt like no one acknowledged we'd had a baby. I actually went to the grocery store the night after he was born (he was born at 3:30am, I requested to be discharged and actually stopped on my way home for pumping supplies and milk for my toddler). I felt almost zero postpartum support physically as I was on my feet constantly, shuffling between the hospital and home with my other kid. By the time he came home from the hospital, the family who had been helping out with my big kid seemed to need a break, so my husband and I jumped straight into the chaos of parenting two little ones. I felt like I missed a great deal of healing postpartum opportunities--mentally and physically--because life was so chaotic and it felt like managing it all fell solely on my shoulders.

 

Do you have any practical/logistics suggestions for others in this situation? 

 

Show up. send cards. cook meals. provide childcare for older siblings. make "to go" snack bags for busy parents who are constantly on the go and need to eat healthy, nourishing foods.

 

Do you have any emotional/self-care suggestions for others in this situation? 

 

It's hard to carve out space for self care when this is a very important time to care for others--your baby in the NICU does need you--but take the moments as they come and breathe deeply. Recognize what the signs of postpartum mood disorders are and if you feel like you're drowning, ask for help. Draw attention to your feelings. Talk to someone who listens. Talk to a professional if you're struggling and even if you don't think you are - talk about how you're honestly feeling. 

The Neonatal Intensive Care Unit or NICU can be overwhelming and often feels as if it has a language all of its own. Here is a list of some of the common medical terms and abbreviations you may hear in the NICU. While this list aims at being comprehensive, it is certainly not exhaustive. If your baby's nurse or doctor uses a term that you don't understand, be sure to ask for clarification.  

Anemia - a decrease in the baby ' s red blood cell count; red blood cells carry oxygen.

Apnea - a pause in breathing.

Apgar score -  A numerical scoring system, usually applied at one and five minutes after the birth of all newborn babies. This is to evaluate the condition of the baby based on heart rate, respiration, muscle tone, and color. The score is used by the doctor and nurse to determine if the baby needs assistance.

Apnea - the temporary stopping of breathing by the baby, for 20 seconds or more.

Apnea Monitor - A monitor that is connected to the baby with a sensor to specifically detect apnea.

Aspiration - when a baby breathes in mucus or milk.

Blood Gas - a test to measure the amount of oxygen, carbon dioxide, and acid in the baby ' s blood. The blood sample may be from an artery (ABG), vein (VBG) , or capillary (CBG) . Changes in the baby ' s respiratory care can occur as a result of this test.

BP (blood pressure) - A type of measurement. BP is the force of the blood on blood vessel walls. This is caused by the heart beating and by the muscles inside the blood vessel walls.

Bilirubin - a yellow pigmented waste product from old red blood cells that is excreted by the liver into the stool.

Bradycardia - a slower than normal heart rate.

Cardiac - pertaining to the heart.

CAT Scan (Computerized Axial Tomography) - a test also known as a " scan " that gives a 3-D view of the body ' s internal organs and structures. Medication may be given to your baby to help him or her to remain completely still during the scan procedure.

Catheter - a tube that either drains fluid from the body or puts fluid into the body.

Umbilical Catheter - Artery or Venous (UAC, UVC) - a tube that goes into either the artery or vein in the " belly button " (umbilical cord stump).

Central Line Catheter - a tube that goes into a large or central vein. It is usually placed for long-term nutrition from IV fluids that will provide protein and calories. Two types you might hear about are Broviac or percutaneous ( " PICC " ).

Urinary Catheter - a tube that goes into the baby ' s bladder to drain urine.

Chest PT - gentle tapping on the baby ' s chest to help mobilize secretions (mucus) to be removed by suctioning

CBC (Complete Blood Count) - a measure of the type and number of cells in the blood. This is often part of an evaluation to check for infection or a way to determine the number of red blood cells.

CNS (central nervous system) - The brain and spinal cord.

CPAP (continuous positive airway pressure) - A way to give a steady, gentle supply of air into the airway while a baby is breathing on his or her own. This can be done with a ventilator (breathing machine).

CPR (cardiopulmonary resuscitation) - A way to get the heart and lungs working again if they have   stopped.

Echocardiogram - an ultrasound of the heart.

EEG (electroencephalogram) - recordings of the electrical activity of the brain. The EEG may be useful in recording seizures

EKG (electrocardiogram) - study of the electrical activity of the heart

Endotracheal tube (ET tube) - a flexible tube inserted through the baby ' s mouth or nose into the trachea ( the large airway from the mouth to the lungs)

Extubation - removal of the endotracheal tube (ET tube).

Febrile - pertaining to fever.

Fontanelle - The large soft spot on the top, and the smaller one on the back of the baby ' s head. They will close within 12 and 18 months.

Gavage Feeding - if a baby cannot breastfeed or bottlefeed by sucking; a small tube is placed into the mouth or nose; the end of the tube is in the stomach. The feeding is given by gravity flow through the tube. This is also called tube feeding.

Gestational Age

Prematurity : born less than or equal to 36 weeks gestation

Term Pregnancy: 40 weeks gestation

(9 months + 4 weeks after your last period)

Post Date (Post-Term): after 42 weeks gestation

Grams and kilograms - Metric units of weight. 100 grams is about 3.5 ounces. 1 kilogram is about 2.2 pounds.

Heel Stick - a way to easily draw small amounts of blood from the baby ' s heel for laboratory work.

Hematocrit ( " Crit " ) - percent of red blood cells in the blood, part of the CBC. This is often used to determine if a blood transfusion is necessary due to anemia or low blood volume.

Hepatitis Vaccine - near the end of your baby ' s hospitalization, it may be recommended that your baby be vaccinated with the Hepatitis B vaccine to prevent a viral illness of the liver for which we are all at risk. You will need to grant permission to do so.

HFV (high-frequency ventilator) - A machine that gives hundreds of tiny breaths per minute.

IMV (intermittent mandatory ventilation) - A way to help babies breathe using a ventilator to give a set number of breaths per minute.

Intraventricular Hemorrhage (IVH) - bleeding in or around the brain.

Intubation - insertion of the endotracheal tube (ET tube).

I.V. - intravenous, method of delivering medicine, fluids or nourishment (liquid food) directly into the body through a vein.

IV catheter: A tiny flexible, hollow plastic tube inserted into a vein over a needle. The needle comes out and the catheter stays in the vein.

IV pump: A machine used to give IV fluids.

Jaundice - a yellow coloring of the skin or the whites of the eyes due to an increase in bilirubin; a normal by-product of the breakdown of red blood cells.

Lumbar Puncture (LP) - a small sample of fluid is taken from the space around the nerve endings in the lower back to check for infection. The procedure is also known as spinal tap. It is often part of a sepsis work-up to check for infection.

Meconium - Dark greenish waste products that accumulate in the bowel during fetal life and are eliminated shortly after birth.

Meconium Aspiration - The condition in which the baby breathes in meconium that is in the amniotic fluid.

mL (milliliter) - A metric unit of volume. 30 mL equals about 1 fluid ounce.

MRI Scans (Magnetic Resonance Imaging) - a test also called a " scan " that gives a horizontal or cross-sectional picture of internal organs and structures. Medication may be given to your baby to help him or her to remain completely still during this procedure. This is a painless procedure for your baby. It uses magnetic energy.

Nasal Cannula - a small plastic tube placed under the nose to provide oxygen.

Necrotizing Enterocolitis (NEC) - a serious disease of the intestinal tract sometimes requiring antibiotics and/or surgery.

Neonate - newborn baby.

Newborn Screening - often referred to as the " PKU " test, checks a baby for certain serious medical conditions that may go undetected without such testing. All states require newborn screening to be performed on babies who are born in that state. The conditions that are screened for will vary by state; however, phenylketonuria (PKU), sickle cell disease, and HIV are examples of conditions for which tests are typically performed.

NG tube (nasogastric tube): A feeding tube. It goes through the nose to the stomach.

Nothing by Mouth (NPO) - is the abbreviation for " nothing by mouth. " The baby cannot be fed by mouth at this time.

O2 (oxygen) - A gas in the air we breathe. It is needed for life.

OG tube (orogastric tube) - A feeding tube. It goes through the mouth into the stomach.

Oxyhood - a plastic hood used to deliver humidified oxygen to the baby.

Patent Ductus Arteriosus (PDA) - the Ductus Arteriosus is a normal blood vessel between the major arteries of the heart that usually closes after birth. If it does not close, it is called a Patent (Open) Ductus Arteriosus and may require medication and/or surgery, called PDA ligation.

Peripherally inserted central catheter (PICC) or percutaneous central venous catheter (PCVC) - A type of tube that is put into a central (large) vein.

Pneumonia - an infection in the lung.

Pulmonary - pertaining to the lungs.

Pulse - number of heartbeats per minute

Radiant warmer bed -  An open bed with a heating device.

Renal - pertaining to the kidneys

Respiratory Distress Syndrome (RDS) - a breathing problem common to premature babies where the tiny air sacs of the lungs tend to collapse at the end of each breath, due to a lack of surfactant (defined below). It is also known as Hyaline Membrane Disease (HMD).

Rounds - when the healthcare team meets to discuss patient care.

Saline - a watery solution that contains a small amount of salt and is often used to administer medicine.

Seizures - abnormal, purposeless, repetitive movements of the arms, legs, eyes, or mouth are known as seizure activity in the newborn. It requires further evaluation to determine its cause.

Sepsis - a bacterial, fungal, or viral infection in the blood.

Sepsis Work-Up - when an infection is suspected, blood, urine or spinal fluid will be drawn for culture to confirm the presence or absence of an infection.

Shunt - a device that is inserted into the body to redirect the flow of blood or other fluid from one area to another

SIMV (synchronized intermittent mandatory ventilation) - IMV timed with the baby ' s breaths.

Sputum - a mixture of saliva and mucus that is coughed up from the respiratory tract

Stenosis - an abnormal narrowing of a passageway, such as a blood vessel or other type of opening in the body.

Syringe - device used to inject fluids (e.g., medicine) into IV, muscle, or vein; also used without a needle to give medicine in the mouth

Suctioning - removal of secretions from the baby ' s nose, mouth, throat and/or endotracheal tube with a small plastic tube connected to suction.

Surfactant - a substance formed in the lungs that help keep the tiny air sacs or alveoli from collapsing and sticking together. A lack of surfactant in premature babies contributes to Respiratory Distress Syndrome (RDS).

Tachycardia - an abnormal rapid heartbeat.

Total Parenteral Nutrition (TPN); Intralipids - IV fluids fed straight into the bloodstream that provide a baby who is unable to feed with necessary nutrients: protein, sugar, fat, minerals, and vitamins.

TPR: Temperature, pulse, and respiration.

Transient Tachypnea of the Newborn (TTNB) - a breathing problem common in full-term babies typically from slower than normal removal of fluid in the lungs before birth.

Ultrasound (sonogram) - a type of radiologic test in which echoes of high frequency sound waves provide a picture of the body tissues.

Vital Signs (VS) - the baby ' s temperature, blood pressure, heart rate, and respiratory (breathing) rate.

Perinatal Support Washington