Your baby born at this degree of prematurity is the very youngest that an infant can survive outside the womb. You may have spoken with a neonatologist before delivery and heard scary predictions about your baby – who maybe even suggested that heroic and life-saving measures in the delivery room be avoided instead for keeping your baby warm and comfortable for the short time s/he had with you. But your baby is in the NICU now, and things are happening so fast. Nobody’s talking much to you, other than giving you papers to sign and using unfamiliar terms. Every baby is different, and no one can tell you exactly the events for YOUR son or daughter. Miracles DO happen – they just are not predictable! What follows is a guideline of events and expectations for a baby born at this most extreme limit of prematurity.
The first few hours after birth
A lot of people were in the delivery room, and there was a lot of activity by your baby’s bedside. Most likely, a breathing tube was place in his/her airway and s/he may have been placed inside a plastic bag. You only briefly got to see him/her – and couldn’t touch your baby – before taking your new son or daughter to the NICU. Your birthing support person went with your baby – and now it seems like a very long time since s/he’s come back. The medical team is very busy getting your baby stabilized and starting life-saving treatments. S/he is being placed on the breathing machine, and most likely receiving surfactant if not given in the delivery room. Catheters are being inserted into the blood vessels in the umbilical cord, to allow for blood drawing, monitoring, and giving medications and nutrition. Your baby may be active and moving, and may not be requiring lots of support. This is called the “honeymoon,” which typically ends 12 – 48 hours after birth (see FAQs for further discussion). Your baby may need medication to keep his/her blood pressure up, may need a blood transfusion already, and probably is receiving antibiotics to treat a possible infection.
The neonatologists are watching your baby very closely, taking things hour-by-hour. This will change as your baby gets older, but there is one very important thing to remember: the statistics quoted to you at the time of your baby’s birth regarding chance of survival and possible long-term problems are based on his/her characteristics at birth. For as long as your baby stays in the NICU, those chances still apply. National statistics of survival rates and outcomes are based on gestational age, sex and weight at birth, as well as whether you had multiple babies and if you received steroids before birth. Because these characteristics remain the same throughout the entire NICU period, the prediction made at birth applies.
The end of the first week
Your neonatologists are now looking at things day-by-day rather than hour-by-hour as before. Your baby may no longer be on the breathing machine, but rather may have a device on his/her nose/face that is blowing air into tiny lungs. Those catheters in the belly button may have been removed and replaced with a different kind of catheter called a PICC line or a PCVC (see FAQ’s for further information). This is where intravenous nutrition and medications are being delivered. You were probably asked about breastfeeding and, if you said yes, you have been pumping regularly. Finally you’re starting to get enough milk that you can collect it. Your baby may already be receiving tiny amounts of your breastmilk – or another specialized feeding substance – through a tube into his/her tummy. Your baby is losing weight, but your doctors say that’s a good thing. Things seem to be pretty good, and you start to relax a bit.
Second week of life (DOL 8 – 14)
When your baby is around one week old, or maybe a little sooner, s/he may have a head ultrasound performed. This ultrasound, not unlike the ultrasounds you may have had while you were pregnant, is a way of examining the basic structure of your baby’s brain without entering his/her body. Your doctors primarily are looking for signs of bleeding in the brain, called an intraventricular hemorrhage (IVH). (See Intraventricular hemorrhage in Diagnoses/Conditions for more information.) Extremely premature babies have very fragile blood vessels that can easily break and bleed, especially with rapid changes in blood pressure. When this happens to the blood vessels that line the ventricles of the brain, we may be able to see the blood clot on the ultrasound. If your baby has suffered an IVH, your doctors will talk to you about its significance and what to expect in the weeks to come. Many babies with IVH go on to develop without abnormalities and, conversely, some babies who never had IVH end up with brain abnormalities.
In the second week of life – or later – your baby may also have an ultrasound of his/her heart to look for a patent ductus arteriosus (PDA). (See PDA in Diagnoses/Conditions for more information.) The ductus arteriosus is a blood vessel found in the fetus that is programmed to self-destruct within minutes to hours after birth at term. In babies born prematurely, that programmed destruction may not occur and – while essential for a fetus – may cause problems for a baby. Your doctors may decide it needs to be closed, or may decide to watch-and-wait. If you have questions about these decisions, be sure to ask your neonatologist.
Feeds should be increasing in volume into your baby’s tummy and less into his/her veins. It is more likely than last week that the breathing tube in his/her windpipe will have been removed and replaced with some sort of nasal device that is blowing air into his/her lungs. S/he should have stopped losing weight, and may actually be back to birthweight by now.
End of the first month
If things have gone well, your baby is now feeding entirely into his/her tummy, the breathing tube has been out of the windpipe for some time, and problems with IVH and/or PDA are either eliminated, or stable right now. You may be kangarooing regularly, and weight gain is steady. (Don’t forget to chronicle your baby’s journey, and chart his/her growth, in My NICU.) You may also be changing diapers, taking temperatures, and performing other baby-care tasks. If you’re having some trouble keeping your supply of breastmilk up, see “Breastfeeding” for helpful tips.
Second month of life
You’ve settled into a routine, and can really see how your baby has grown. Over the past few weeks, you may have had some scares, with your baby’s feeds being interrupted for a few days, and maybe hearing that s/he was “being evaluated for sepsis.” Your baby’s blood was drawn, maybe urine and spinal fluid too, and antibiotics (see “NICU Medications”) may have been given. It is not uncommon for babies in the NICU to acquire infection during their hospital stays, resulting from inability to fight infection as well as the invasive procedures and devices necessary to care for him/her. (Prevention of these infections is why your NICU has rules and procedures for handwashing and such.) Feeding on breastmilk decreases the likelihood of these infections. Your baby may have had quite a problem with his/her feeds, perhaps leading to the diagnosis of necrotizing enterocolitis (NEC). This condition occurs in babies most often around 30 – 32 weeks PMA who are receiving all their feeds into their tummies – more often with formula than breastmilk. (See NEC in Diagnoses/conditions for further information.) Babies with medical NEC may receive antibiotics for a week or two, and have a period of bowel rest; in more severe cases, the intestine can develop a hole, causing serious infection and requiring surgery (known as surgical NEC). Some cases of surgical NEC can result in long-term complications and, in the most severe cases, can be life-threatening. No one knows for sure what causes NEC; breastmilk has been shown to decrease (but not eliminate) the risk of developing it. If your baby has surgical NEC, have frequent conversations with your baby’s neonatologist and surgeon about the short and long term plans.
When your baby is two months old (DOL #60), it’s time for his/her first set of baby shots. Immunizations are the only milestone that uses chronologic age for scheduling (see “How Old is My Baby?"). The American Academy of Pediatrics (AAP) recommends a comprehensive schedule of immunizations in the first 12 -15 months of life to adequately protect infants and children from life-threatening infections.
PMA 34 wks and beyond
By now, hopefully, your baby is “feeding and growing.” S/he may have moved to another spot in the NICU, sometimes called the “convalescent” nursery or “special care” nursery. Weight gain is steady, most of the tubes and lines have been removed, and your baby may now be in an open crib rather than in an incubator. S/he may be wearing “baby clothes” and starting to feed from a bottle. S/he may still require a little bit of oxygen delivered through a nasal cannula, and may still be having apnea/bradycardia/desaturation spells. (See “Apnea of Prematurity” in Diagnoses/Conditions.) Now is when it gets really hard. Why can’t you take your baby home? All s/he really needs to do is eat better, and, if only the nurses would try more often, your baby would get it. Your NICU team understands you are impatient. Everyone wants your baby to get home the moment s/he is ready – not one moment later, but not one moment sooner, either. (See “When Can I Take My Baby Home?") A baby without complications will be ready for discharge home when s/he can do all the things a term baby can do. These skills come through brain development, not by practice. Nature says it takes 266 days from conception for a baby to fully develop – that’s how your due date was determined. For babies born prematurely, our hope is that development occurs at the same rate as if the pregnancy had continued. We can slow it down, but we can’t do too much to speed it up. Some babies are ready for discharge as early as 36 – 37 weeks PMA, but we can’t predict which ones. Keep your due date in mind as your target for discharge, and keep an open dialogue with your neonatologists about discharge plans.