My first and only child was born at 28 weeks gestation. It was a very scary time for me because I did not know what to expect and wanted my daughter to be ok. I am trying to put together information so parents can have an idea of what to expect if they are in the same or similar situation that I was in. Most of this information is based on a baby born between 26 and 29 weeks of gestation.
A brief over view of my daughter: she weighed 2 lbs 1 ½ ozs at birth and was 14 1/4″ long. She was in the NICU for 2 months and 1 day. After the first month she was moved from the North unit to the South unit. The north unit is for the babies that need more care or just coming in. The south unit is for babies that are more stable and are getting ready to go home. Her main problems in the NICU were RDS, PDA, IVH, ROP and apnea. These are very unfamiliar words for someone that is not a doctor so I was pretty confused at first.
RDS stands for Respiratory Distress Syndrome. Most premature babies born before 30 weeks of gestation have problems with RDS. Many of them will be put on a ventilator at first, but continue to need oxygen through nasal prongs until they’re closer to term. Around 50% of babies born 26 to 29 weeks gestation develops BPD (bronchopulmonary dysplasia), but it normally will resolve before the age of two.
A premature baby who had RDS at birth that still needs the ventilator several weeks later can develop BPD. This happens when the supplemental oxygen and mechanical ventilation has damage the babies lungs and has impaired their natural healing process. The most severe forms of BPD are very rare.
PDA is a fetal blood vessel close to the heart, which is supposed to close within the first few days of life. Sometimes it will remain open in preemies. When there’s a PDA, too much blood flows through the lungs, making a premature baby’s RDS worse and increasing the chance for chronic lung damage. Some PDA’s don’t seem to cause problems, so the doctor may wait to see if they will close on their own.
If the PDA interferes with the baby’s breathing or heart, the doctor will try to close it, usually medicine works. About 10% of babies born between 26 to 29 weeks gestation has to have surgery to close their PDA. Medicine worked on my daughter.
IVH stands for Intraventricular Hemorrhage. A baby’s brain is sensitive to changes in blood flow at this age, and sudden changes can cause bleeding. Nearly all bleeds or IVH, happen in the first three days of life. The NICU doctors will do a head ultrasound during the first week to see if your baby has a bleed. If your baby has a bleed then the doctors will continue to do a head ultrasound until it disappears. Grades 1 or 2 are considered small, they are common, and cause no known problems.
Grades 3 or 4 are larger and their diagnosis is hard to predict. Some of these babies recover and are normal, while others can develop long term disabilities, such as cerebral palsy, mental retardation, visual or hearing impairments, or do not survive. The first ultrasound that they did on my daughter showed a grade 2 bleed so they did a follow-up the next week.
The next week’s ultrasound showed that the bleed had gotten bigger and it was a grade 3. The doctors told me the worst case scenario so I was really worried. This was the scariest medical problem that my daughter had to face. They did ultrasounds for the next two weeks just to show the same results, finally on the fourth week the ultrasound showed that the bleed was better and the doctors said that she would be fine.
ROP is Retinopathy of Prematurity. About 75% of 26 to 29 week preemies develop abnormal blood vessels in their eyes. This problem usually resolves without causing vision problems. In some cases it can cause nearsightedness or astigmatism which is correctable with glasses. Only a small 7% of babies born at this gestation have serious enough problems that require surgery or other procedures to keep their retina from detaching.
An even smaller 4% can become blind. Babies will get their eyes tested around four to six weeks of age, because ROP doesn’t develop immediately. The eye doctor checked my daughter’s eyes once a week after the first test showed she had ROP. Alexis’s eyes developed normally. The eye doctor said that the ROP had resolved on it’s own around two weeks before she got to come home.
Apnea of prematurity happens because the breathing center in their brains isn’t fully developed. They sometimes forget to breathe. A ventilator is needed if the apnea is severe, but rarely last more than a couple of weeks. Apnea gets better over time and is usually gone by 36 to 38 weeks conception.
Alexis had apnea and the doctors treated it with caffeine. She was sent home on an apnea monitor because she would still have a few spells where she’d forget to breathe. She was on the apnea monitor until she was 6 moths old. Her pediatrician had her heart checked by a cardiologist before he would take the monitor off of her.
Being scared of seeing your baby for the first time in the intensive care nursery is nothing to be ashamed of. It’s completely normal. Your baby is in good hands with the NICU doctors so try not to worry so much and take the time that you need to regain your strength (mind and body).
These are some of the differences between a preemie and a newborn that you may notice: Preemies younger than 30 weeks have thin skin, so the veins are easily visible, making the skin have a reddish-purple tint. They tend to look a little wrinkled until the layers of fat appear and fill out the skin’s folds. Their slender fingers and toes are unusually long and graceful. In extremely premature babies, the top layer of skin hasn’t formed yet. So their skin can look smooth and shiny, and may be too fragile to caress and rub (you can touch it gently).
The very young preemies don’t have any body hair and the hair on their head is just a fine fuzz. An older preemie is covered with lanugo (soft, fuzzy, fetal hair). Lanugo is normally heavy on the back, upper arms and shoulders, but it will go away. If a baby is born before 26 weeks their eyes could be fused shut but will open on there own. A preemie’s ears still have some developing to do. I got worried when I saw my daughters ear folded over so I asked the doctors and they said it was normal. Before the 35th week ears are very soft, without the firm cartilage that develops later. So an ear that gets folded over will stay that way rather than springing back open on its own. You can gently move the ear to unfold it.
Breast nipples don’t appear until around the 34th week, although they may have hints of their areola. Sexual organs are differentiated even on extremely premature babies, but they aren’t mature yet. Younger babies have less muscle tone so they may lay flat on their back, with their arms and legs stretched out like a frog. Before 28 weeks a premature baby doesn’t move much but sometimes may curl their fingers into a fist or stretch or flex an arm or leg. An older peemie moves more often, but their movements are jerky. A premature baby startles more often than a full-term baby.
The NICU has several machines by your baby’s bed. Newborn preemies can’t maintain their temperature yet so they will have a sensor taped to your baby’s skin to monitor the body temperature so they can adjust the heat accordingly. The Cardio respiratory monitor is one of the most important. It keeps track of the heart beat and breathing. It does this with three leads or sensors that are stuck on your baby’s skin and attach to the monitor with wires. A preemie’s pulse ranges from 120 to 160 beats per minute and breathing from 30 to 60 breaths per minute. The monitor sounds a very loud, beeping alarm if either of the numbers stray too far outside of the normal range.
A baby’s own movements can move the leads and cause a false alarm. So try not to be terrified every time the alarm goes off…which is easier said than done. When there really is some irregularity, it may be an episode of bradycardia which is a slow heartbeat or apnea which is a pause in breathing. There is a blood pressure monitor so the nurses can take your babies’ blood pressure several times a day. Pulse oximeter and carbon dioxide monitors are on some premature babies to indicate how much oxygen is in the blood flow. For the pulse oximeter to measure the oxygen in your baby’s blood accurately, it has to pick up the heart rate.
Anything that interferes with that-like your baby moving around-will set off a false alarm. IV’s are common sights in all hospital patients. IV’s are placed in veins to deliver liquids into the bloodstream to help sustain premature babies when they are not allowed to eat. Some preemies have a second IV line to give them antibiotics or other medications. If you notice a splint on your baby’s arm or leg, don’t worry: splints are used to keep lines from being accidentally knocked out of place. Preemies that are too young to breastfeed or drink from a bottle will have a soft tube that is inserted in their nose or mouth and goes down into their stomach which is called a feeding tube.
The ventilator is one of the most important machines in the NICU. It’s a mechanical breathing machine in case your baby is not ready to breathe completely on their own. When a baby is put on a ventilator, a small tube (which is called an endotracheal or “ET” tube) is inserted through the mouth or nose into the windpipe and is secured by tape to their face. This sends air directly to the lungs. The ET tube is attached to bigger tubes that are attached to the ventilator.
The ventilator is a box on legs that will stand next to your baby’s bed. If a baby doesn’t need a lot of help from a ventilator but isn’t ready to breathe completely on their own, they may be wearing prongs in the nose called CPAP (pronounced “see-pap” which is short for continuous positive airway pressure). Babies with mild forms of respiratory problems that can breathe entirely own their own and just need some extra oxygen may be give a smaller set of prongs, called a nasal cannula.
My daughter was born at 28 weeks gestation only weighing 2 lbs 1 ½ ozs. She is eleven months old now and she weighs 22 lbs. She spent 2 months and 1 day in the NICU and came home on an apnea monitor. It was scary having her at home at first because I was so used to having professionals help me with any questions that I had.
When she first came home she would still choke during feedings because she didn’t have the suck and swallowing reflex down quite yet. The doctors say that learning to eat is one of the hardest things for us to do. Now she does fine and hardly ever chokes. My daughter is doing everything that she should be doing for her adjusted age and some things at her normal age. They say that a premature baby is normally caught up by the age up 2. She hasn’t had any medical problems since coming home and is growing like a weed.
The NICU can be a very scary place because there are so many machines and alarms going off all of the time. You already have your baby to worry about so it just adds to the stress. Try to relax and enjoy spending time with your baby. I’m sure most NICU’s have a support group that you can contact also. I have put this information together in hopes to help people that are going through a premature birth.
I know how difficult this time can be so if you have any questions please feel free to email me at [email protected] and I will answer your questions or I will find an answer to your question to help take some of the stress off of your shoulders. I hope that this information has helped you in some way and want you to know that you are not alone.
