My Pregnancy and NICU story (Part One)

By Brittany Washburn

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When I found out I was pregnant, we knew it was going to be a vastly different pregnancy than the norm. I have Reflex Sympathetic Dystrophy, a rare disease that attacks the central nervous system and causes immense pain and other symptoms; it’s rated as the most painful disease known to man by the McGill Pain Scale. I was high risk before I was ever pregnant. I was followed closely by an interdisciplinary team that included OB/GYN, my pain management doctor (who was also chief of Pain and Palliative Care), Maternal Fetal Medicine, Chief of Anesthesia, Neonatology, Endocrinology, Labor & Delivery representatives, several residents and fellows, the OB nurse manager, and several OB nurses. Plans were put into place for an extended epidural and a bonus dose of ketamine following delivery in order to tamper any spreads of the disease. My OB and MFM worked to put together a delivery team of the best of the best for us. 

The biggest concern was Neonatal Abstinence Syndrome (withdrawal) for the baby. Because of the RSD, I had to remain on many meds, including narcotics, to manage the pain. If I didn’t, I risked a high rate of miscarriage caused by the intractable pain. All of this was known by all the doctors on my interdisciplinary team from the get go and all agreed that this was necessary. Because of this, baby and I were monitored very closely by MFM. The baby was monitored with Biophysical Profiles at least once a week from 24 weeks on, a fetal echo, and several other precautionary ultrasounds. We toured the NICU out of caution for what may happen, and discussed the plan with the neonatologist.

My son was born at 35 weeks due to several factors: decreased movement, failed Biophysical Profiles, uncontrolled Gestational Diabetes (9.4oz at 35 weeks- we called him the macropreemie!), and ultimately the kicker was preeclampsia. I had a whole team for me in the OR as well as 2 teams for him. He went straight to the NICU after he tanked his blood sugars about an hour after birth. I got to hold him as I was wheeled from the OR to my room on the high risk floor and then he was whisked away; I wouldn’t see him for another 2 days due to the extended epidural. He was officially diagnosed with prematurity, unstable blood glucose, pneumonia and pulmonary issues, and Neonatal Abstinence Syndrome (NAS). He ended up spending 3 weeks total in the NICU. He had an umbilical line placed as well as an NG tube. He was treated for NAS and weaned with Tincture of Opium, and did receive several rescue doses. There were several times we had to speak up and be firm with the NP and one nurse, but otherwise we had awesome staff. After he was discharged, we saw the pediatrician and we thought everything was good except for some reflux. Unfortunately, what we thought was reflux actually turned out to be lingering withdrawal. We implemented withdrawal comfort measures at home per the pediatrician and home life improved. He was about 8 weeks when things really turned a corner for the better and about another week and he was done going through the withdrawal. I've told you my story in hopes it will help you, as well as compiled this list of tips and reputable resources for your benefit. I hope it helps!

Withdrawal in newborns is called Neonatal Abstinence Syndrome, or NAS. If your doctor refers to either of these, they are talking about withdrawal in a baby. Sometimes the lingo gets confusing!

These are guidelines and I have sourced from reputable sources, but this is only personal thoughts and not medical advice in any way, shape, or form. Please consult your doctor if you have any questions about your particular case or for professional advice. Please feel free to use the cited, reliable sources/links to show your doctors if you ever need to.

First, let's say this right off the bat: 

DO NOT STOP TAKING YOUR MEDS WITHOUT A DOCTOR'S SUPERVISION or without being weaned. Let me repeat that one more time. DO NOT stop your meds without a doctor's guidance! You risk more harm to your baby from the sudden halt of medication and the subsequent stress to your body (and theirs) by doing this, including the possible loss of your baby. While the decision you make regarding your meds is ultimately yours, please do not do anything without consulting your doctors (everyone on your team including OB, MFM, and Pain Management)! Your baby's life might depend on it!

I recommend touring the NICU of your delivering hospital or the NICU of the hospital the baby would be transferred to before delivering, as every hospital is set up differently and different procedures regarding NAS. 

There are many medications- legal and illegal- that can cause NAS. NAS can also be caused by the combination of medications you're on, rather than one specific drug in particular. Some common ones are narcotics, benzodiazepines (Xanax, Klonopin, etc), most anti-depressants (Prozac, Cymbalta, Celexa, Paxil, etc), some anti-spasmodics (Baclofen, Soma), and other medications. Many of these also are contraindicated during pregnancy and cause tetra-toxicity. You should go over your list of medications with your OB/MFM/PM team to make sure you are on safe medications. 

The one group of medications that has been highly studied during pregnancy is Narcotics (prescribed). While they may cause a period of withdrawal, they are not known to cause any damage to neurological systems, or other systems like cardiac, nephrology, or pulmonary, like other classes of drugs can do- ESPECIALLY when the mother truly needs it and is not abusing it. They also do not seem to cause long term damage like say, Fetal Alcohol Syndrome. When it comes to properly used and prescribed narcotics, once the baby has gone through the withdrawal, there should be no lingering or lasting effects.

The other thing to remember is that with Narcotics, unlike with any other class of medication that causes NAS, there are medications that can be given to the newborn to help ease the NAS symptoms. Tincture of opium is most common and what is recommended by the AAP. Methadone and morphine sulfate may be used as well. There are other meds they may give the newborn, like phenobarbital, to help with other issues that may occur. It's also been shown that phenobarbital and tincture of opium used together may help more than just tincture of opium alone. 

An NAS baby's symptoms may not start for 48-72 hours after birth. Their period of withdrawal may last longer than their needed hospital stay. The hospital stay will start with observance on the postpartum floor (unless there are other reasons to go straight to the NICU like prematurity). Usually, to be safe, the hospital will require a monitored stay for that 48-72 hours, with mom usually being allowed to stay as well. If any issues are detected, the baby will be moved to NICU for closer observation and treatment. 

Once in the NICU, there will be a team assigned of many different professionals. The nurses do what is called "care" usually every 3 hours: listening to heart and lungs, taking temp, changing diaper, changing position, etc. before doing scheduled feedings. Parents are often encouraged to participate or even do care on their own. You'll need to be instructed because things like diapers must be weighed. Neonatologists come through for rounds usually twice a day, in the morning and evening. The nurse practitioner is usually the first one to respond if needed through the day. 

They will have an IV placed (if not an umbilical line placed if going to NICU right after birth), as well as likely an NG tube put in. Be prepared for the IV to move frequently as newborn veins are tiny and often collapse, and they can pull it out too- it may even end up in their head (actually one of the better spots for it!). Expect the NG tube to be pulled out and replaced several times. It's not a pleasant thing to watch the NG tube be replaced, so if you aren't comfortable you might want to wait outside while the nurse replaces it. They need the IV not only for fluids, but also for caloric intake (also called Total Protein/Parenteral Nutrition) if they are unable to keep weight on. They may need the NG tube if they are poor feeders (a known issue with NAS) or have projectile vomiting (as the machine administers slowly and can be given directly into the colon).

Doctors and NICUs use a rating scale to help determine where your child is in the withdrawal process and if they need a rescue dose, or if their weaning meds can be decreased, if they are ready for discharge, etc. The scale most used rates where the child is for major symptoms (many I list below); a score over a certain number means they need weaning meds, a score below a certain number means no meds, another score means the end of withdrawal. It can fluctuate between the persons doing the scoring, so if there's a score that sticks out of place don't hesitate to ask why (and yes, you ARE ALLOWED to see those scores, so ask for them!). There are some hospitals (like CHOP and Boston Children's) who are starting to implement a new way of rating where the baby is in the process because the most popular scale does have a lot of subjectivity, but for the most part most doctors and NICUs use the Finnegan scale; there is also the Lipsitz and Ostrea scales. I've linked more information about the Finnegan scale below.

You will watch your baby go through many NAS different symptoms. It's not easy to watch. Irritability, stiffness, jerking/startling, tremors, a very high pitched cry, poor latch/suckling, loose stools, yawning, sneezing, poor sleep, sensitivity to light, inability to be soothed, not liking being handled/touched/moved (but liking to be cuddled/held tight), profuse sweating but shivering, projectile vomiting are just some of the symptoms we saw with our son. There are many more, listed in the links below. Some we saw once or twice, some were reoccurring. 

It used to be that babies with mothers on meds that cause NAS were always fed formula. That suggestion is changing, though. While you need to research each and every medication to see if it passes through breast milk as well as keep in mind that it's not necessarily the individual medicine but the combination of all the meds together that is cause for concern, you can successfully breastfeed while on meds. It's been found that with narcotics, Breastfeeding them through any withdrawal may be the best treatment option. Always consult MFM, your OB, your pediatrician, and Lactation Specialist/IBCLC before going this route, as there are meds that cause NAS, such as some anti-depressants, that aren't safe in Breastfeeding. And as always FED is best!

Comfort measures are those things that are not medication related that are done to keep the baby as comfortable as possible while going through this. These efforts include tight swaddles (we LOVED Halo SleepSacks for this reason), dimmed or dark rooms, no sound or just a sound machine, rocking/swaying (swings and vibrating bouncy chairs are a lifesaver), no extraneous touching/movement but lots of cuddling (especially skin to skin), pacifiers, less milk/formula but more frequent feedings, soothing diaper rash caused by loose bowels with cooling diaper cream (maalox and triple paste are what my NICU recommended), extra clothes for warmth that are soft (avoid terrycloth if you can), warm baths (get a regular hand towel and wet it in the warm water and place it over to keep warm and continuously pour warm water over the towel), no extra visitors or major changes in scenery. Once the NAS score has dropped down below the point of weaning medication, you'll need to use comfort measures only until the meds are out of the system completely. Comfort measures take a LOT of work, so make sure to trade off with someone so you can rest and recover. Here's a great resource that lists comfort measures: http://www.hamiltonhealthsciences.ca/documents/Patient%20Education/NeonatalAbstinenceSyndromePlanningCare-lw.pdf

Narcotics/Opiates are not the only drugs that can cause NAS. Anti-depressants, anti-spasmodics, anti-anxiety/benzodiazepines, etc, can also cause withdrawal in your newborn. There also is an added issue with many other classes of meds- there is no way to help ease your child through these withdrawals, unlike with narcotics. If you are on any medication that causes concern and are already pregnant, you can be weaned and give your baby the less likelihood of NAS as long as there is a week to 2 weeks without that med while in utero. If you deliver and they are going through withdrawal from these meds, be prepared for lots of comfort measures. Be sure to discuss your medications with both your OB and Pain doctors, as well as MFM and even a pediatrician. It's even a good idea to do a pre-conception consult with MFM before you start trying to conceive, so that you can discuss and issues with medication and can start the changes before you are pregnant (it may be work up front but it saves in the long run). And don't be afraid to research the drug. 

Most hospitals' current practice is to keep baby until they are completely weaned from any supporting medications (it used to be some pediatricians would oversee weaning from home). However, just because they have weaned off meds does not necessarily mean that they have finished going through NAS. Babies can experience withdrawal up to 6 months of age, and you'll need to watch for any residual withdrawal- especially if you were on medications other than narcotics that can cause withdrawal, as they take longer to recover from because there's no medication that can help support through it.  If you even have a twitch of a thought that it might be withdrawal, start comfort measures and make an appointment to follow up with the pediatrician immediately. Make sure you see YOUR pediatrician that knows your child's case and history, so it's not mistaken for anything else. If they need pharmacological support, they will need to be readmitted in most places; if that happens, they will be admitted to a children's hospital/wing NICU or PICU and not necessarily the NICU/PICU at your delivering hospital (though possibly). If they are still going through withdrawal, but don't need medication, you'll do support measures at home and be seen frequently by your pediatrician to monitor baby closely.

Sources:

Overview: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4187528/#!po=18.6275

Quick Overview: http://www.vuneo.org/6381%20NAS%20Guide.pdf

NEJM overview: http://www.nejm.org/doi/full/10.1056/NEJMra1600879#management

Touring the NICU: https://www.texaschildrens.org/departments/newborn/nicu-families/what-look-nicu

Chronic pain treatment and pregnancy plan (purchase): http://onlinelibrary.wiley.com/doi/10.1111/1552-6909.12487/abstract

Narcotics use in pregnancy: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2809170/

Narcotics use in pregnancy and lasting effects: http://advocatesforpregnantwomen.org/issues/pregnancy_and_drug_use_the_facts/experts_urge_media_to_end_inaccurate_reporting_on_prescription_opiate_use_by_pregnant_women.php

Pharmacology treatment: http://emedicine.medscape.com/article/978763-medication#1

NICU team: https://medlineplus.gov/ency/article/007241.htm

IV and NG tube: http://pediatrics.aappublications.org/content/101/6/1079

Finnegan Withdrawal Scale: http://www.ncpoep.org/guidance-document/neonatal-abstinence-syndrome-overview/neonatal-abstinence-syndrome-nas/

Symptoms: http://emedicine.medscape.com/article/978763-clinical#b2

Breastfeeding: http://pediatrics.aappublications.org/content/117/6/e1163

Comfort measures: https://www.pediatricnursing.net/ce/2016/article40051.pdf

Likelihood of NAS: http://pediatrics.aappublications.org/content/101/6/1079