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So, You are the Parent of a Preemie |
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What is a preemie?
A normal human gestation is 40 weeks long, so a preemie is any infant born before 37 weeks. The definition of a preemie is further broken down into two groups, micro preemie and preemie. A micro preemie is technically defined as a baby born before 26 weeks and weighing less then 700-800 grams or about 1.75 lbs. However, the term micro preemie has become loosely associated with infants under 3 lbs or 1500 grams.
A preemie is then considered to be over 3 lbs, but born before the 37th week. |
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Will my micro preemie or preemie be ok?
That is the very first question out of my mouth as soon as I heard the doctor say, “It’s time” when my daughter was just 26.5 weeks along with her second child. Let me say this first, advancements are being made rapidly and these little ones are surviving earlier and earlier. At the time of our 26 weekers birth, 24 weeks was about the earliest they even tried to intervene. But just 4 years later when our second preemie grandchild was born, they were regularly attempting to intervene at 22 weeks.
Please keep in mind that while you will see statistics, they are just that, statistics. They do not account for the individual child, your child. Our granddaughter was born at 26.5 weeks, weighed 1 lb 15 oz. She had lost nearly half of her blood volume at birth and was black and blue from head to toe from a very rough delivery. She was kept on the vent for longer then usually hoped for, about 10 days and was given oxygen up until the day before she went home. She spent nearly 3 months in the hospital. Yet, she never had 1 blood transfusion, no infections, no retinal problems and was able to breastfeed while never being given a bottle. So you must focus on your little one‘s positive outcome. Gather up all the strength you can, and be positive because it is believed that they can feel your love and strength in your gentle touch and the tone of your voice. |
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What to expect and here are the statistics.
I’ll start with preemies or those born after 28 weeks. Something we learned through our journey is that size isn’t the major factor. It is more the gestational age at birth. So you can have a 31 weeker who maybe only weighs 2 lbs. due to some other complications. Focus on the 31 week part, not the size. Because they are 31 weeks, even though still extremely small, they have had that extra time for organs to mature. So even though tiny, organs like lungs are at the maturity of a 31 weeker and that is good!
Generally speaking you can expect a 90-95% survival rate for a preemie born after 28 weeks!! Of course the earlier they are, the longer they will need to be in the NICU and additional interventions may be needed at the beginning. Boys tend to diddle around a bit more then the girls. As an example our second preemie grandchild was a little boy. He was born about 8 weeks early, but was really big at nearly 5 lbs. At birth it looked like he would need a few days to a week in the NICU. But he seemed to like it there and put up a big fuss when there was discussion about going home (just kidding) and literally blew a hole in his little premature lung. So his stay was extended for nearly 1 month. But he is fine, and is a whooper of a little man.
Now on to the micro preemies. I am sure you already realize that if you are the parent of a micro preemie your NICU experience is going to be very different. You will need to hunker down for the long haul and steel yourself for the journey you are going to be taking. But YOU CAN DO THIS! First of all, it is going to be a shock when you see your little one for the first time. When I saw my granddaughter for the first time, even though I thought I was prepared, I felt as if my legs were going to give out from under me. She was so small. You can’t even quite imagine it until you really see it.
Micro preemies look very different. I have heard it said they look kind of like a plucked baby bird, and they do. Babies do no put on layers of fat until the last weeks in the womb. So babies born before 30 weeks tend to be rather skinny. The earlier they are as you can expect, the more extreme the situation is. Their skin can look transparent and arteries can easily be seen. The lack of fat on micro preemies makes their fingers and feet look extra long. Their skin is very fragile and sensitive, so contact should be done very gently and NEVER stroke them.
A micro preemie born before 27 weeks will likely still have their eyes sealed shut. Who knew? I thought this was only true with puppies. They also have virtually no muscle tone, so they lay there pretty sprawled out. But it will be no time at all before they are wiggling around, finding their mouth and all those little wires to hang on to.
The good news is that more and more of these little miracles are surviving every day. As of this last summer 2009 it was reported that 70% of babies born prematurely between 22 and 26 weeks are now surviving! Thanks to more advanced prenatal care and advancements in NICU medicine we are loosing fewer and fewer of these precious children.
With each week survival rates jump in leaps and bounds. As of this last summer it looked like this. 22 weekers surviving at 9.8% (that may not seem like a lot, but just a few years ago the survival rate was an ugly 0). Then it jumps to 23 weekers surviving at the rate 53%, 24 weekers at 67%, 25 weekers at 82% and 85% of 26 weekers were still alive at 1 year! That is amazing!!
Among those survivors 45% have no severe problems! For those who survive 28 days, there was no significant association between gestational age at birth and surviving 1 year. That is so very encouraging. So much better then the statistics we were given us as the delivery of our 26 weeker approached 6 years ago. |
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What you can expect while in the NICU:
You can expect to become highly educated that is for sure. So listen up when the doctors and nurses talk to you. It may all sound like Greek at first, but before you know it, you will be conversing with your team as if this was all a part of every day life. Here is a list to get you started of terms you will hear.
Apnea: Very common in preemies to the point it is almost expected. They simply stop breathing and have to be reminded to do so. Thankfully they usually grow out of this by the time they get to go home.
Billi Lights: Also known as Phototherapy, are fluorescent lights that break down bilirubin in the skin, reducing jaundice.
Blood gas: A test run to check for oxygen and carbon dioxide in the blood.
Brady: Deceleration of heart rate, usually caused by an apnea or sometimes it can be caused by reflux. Don’t panic, heart rate usually goes back up with a gentle reminder to breath which comes in the form of a little stroking of the feet or a little pat on the rear. Just a little wake up and breathe call.
DSAT: Or Desaturation is a decrease in oxygen levels.
EKG: Measures heart activity.
EEG: Measures brain waves.
Electrodes: Your preemie will be hooked up to a lot of these and sometimes it seems like a tangled up mess, but each wire serves a specific purpose. They simply send information to monitors.
Gavage Feeding: The process of feeding the baby through a tube that runs down to the stomach. Extremely common.
Nasal Canula: The little tube that runs to their nose. Usually administers oxygen and sometimes is used as a CPAP giving a little added breathing support.
Nasal CPAP: A small amount of air that is added to oxygen which creates a tiny bit of pressure, helping to keep the airways open making it easier to breathe.
Nasal Gastric Tube: A tube that is run through the nose to the stomach to feed your baby. At times it can be run through the mouth which would be called something a a little different then.
Oxygen Saturation: The level of oxygen in a baby’s blood. Usually measured by the pulse ox.
Pulse Oximeter or Pulse Ox: Indirectly measures the oxygen saturation of the patients blood. You will usually find it attached in the case of a preemie to their foot. You’ll know it by the little red light.
SAT: You may hear your team say your baby is satting at say 90%. They are talking about the oxygen levels in the blood.
Surfactant: Medication given immediately after birth of preemies with lungs not ready for life on the outside. Helps tremendously in maturing the lungs and has increased survival rates tremendously. Recent product updates have made it work even better.
UAC & UVCs: Sometimes referred to as an umbi line. This is a tube that is inserted through the belly button. Either tube can be used to give fluids or draw blood. The UAC is also used to monitor blood pressure.
Ventilator: Used when lungs are very immature. Helps to move oxygen in and out. Surfactant is given and a tube will be inserted into the baby’s airway.
Sometimes when a preemie is very sick and not responding to a typical ventilator they will be put on a High Frequency Ventilator. There are a few different kinds, but the most common is known as the Oscillator. An Oscillator moves very small amounts of air at a very high rate of speed, usually between 240-480 breathes per minute. Babies on this type of vent may actually appear to be vibrating from this rapid air movement. |
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What will determine how it will turn out for my preemie?
A lot has to do with the individual circumstances of your premature baby. Of course the longer your little one stays tucked away where they should be, inside of mom the better. Being a multiple may complicate things a bit. Whether or not there was any oxygen deprivation at birth or while in utero will change things. Finally whether or not there was time to treat your little one with steroids before birth will improve the situation. Steroids will speed up lung development which will make all the difference in their being able to breathe or not breathe once outside.
For those born before 26 weeks it is expected that the majority will have some sort of disability ranging from severe to very mild. With the greater percentage having very mild disability, meaning slightly lower IQ or needing glasses to no problems at all. |
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What are some of the possible NICU problems?
Respiratory distress: Is a serious breathing problem that affects mostly babies born before 34 weeks. It is due to that missing surfactant. Thankfully the development of surfactant in the laboratory has made surviving this situation much easier.
Bleeding in the Brain: Most commonly seen before 32 weeks and occurs in about 1/3 of babies born between 24-26 weeks. It is because delicate blood vessels may not be able to tolerate the changes in circulation.
NEC/Necrotizing entercolitis: A potentially dangerous intestinal problem where the intestines do not have an adequate blood supply which can lead to infection in the intestinal wall.
ROP/Retinopathy of prematurety: This is related to oxygen levels and can be due to to much oxygen and not enough. It is caused by a disorganized growth of blood vessels in the retina. It may resolve on it’s own or intervention may be needed.
So, having covered the scary stuff, lets move on to being positive about your situation. Often times parents wonder whether or not they should allow themselves to love this little one if they may not survive. We are all faced with that thought when you are first thrown into this world, but hopefully for most it is a thought that passes very quickly. The fact of the matter we are talking about your child or grandchild who desperately needs every bit of your strength you can muster up. When we were thrust into this situation as a family it was decided before Ava even arrived and we were expecting her to come early that we would be there for her first and foremost. No matter what the outcome we would give her every bit of love and tenderness that we could under the circumstances. |
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What can you do to to promote a positive outcome?
Remember that they have heard your voice for some time already and that is comforting to them. As often as you can be there, let them hear your voice. When you are there, try to be positive, don’t let them hear the stress in your voice. Talk to them and whenever you are given the opportunity to interact with your little one, jump at the chance.
Change diapers, and take temperatures. You’ll likely be given that chance very early on.
We would spend hours literally standing bedside cocooning Ava with our hands cupped around her little body. We would hold her pacifier in her mouth for her so she could practice sucking, which gave her a very strong suck when it came time to breast feed.
When the time comes to hold your little preemie, do it. It might seem scary but you will be given plenty of support. Kangaroo Care or holding them skin to skin is amazing for both the parents and the baby. It is usually quite the ordeal at first because as in the case of my granddaughter she was held for the first time still hooked up to all kinds of stuff. It took the nurse and a respiratory therapist about 20 minutes to get her into the arms of her mommy and 20 minutes to get her back to her isolette. But it was worth every minute, and that is what your team is there for. So don’t be afraid to jump at the chance.
As your micro preemie grows, you will be able to put clothes on them. This really lifted everyone’s spirits as it felt like we were making real progress. Everyone enjoyed being able to interact with Ava this way and she seemed to thrive on that attention too. Ava was doing well enough that she was able to start wearing clothes at less then 2 lbs.
Don’t feel like you have to be superhuman. When it gets to tough, step out of the NICU. Go have some lunch, get out of the hospital, get your nails done, get a massage. Do something for you. Regroup and come back with your happy face back on. |
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What might my preemie or micro preemie be able to use?
Most of the necessities will be provided for your preemie by the NICU. But there are a few things that come to mind that I believe are very useful.
The first thing that pops into my head when I think back is the little 14” X 14” blanket by Little Giraffe that was given as a gift. It was the most perfect thing ever. I don’t even know if the person who gave it had any idea how it would actually be used, but in my opinion it is the #1 accessory for the NICU. Ava used hers almost immediately. She laid on it head to toe perfectly and as she grew it became the perfect size little blanket. The softness of these little blankets is like nothing else I have ever felt in a baby blanket. It traveled with her through her entire NICU journey and is in about 60% of all of our pictures.
Something black and white to look at. Black and white are the first color contrasts that are seen well by a baby, and the same goes for preemies. We used a little stuffed black and white dog which could be moved around for her. Then as Ava got older, my daughter brought in a clear black and white picture of herself and Daddy. Seems like it would not be significant, but often times we would come in to find Ava starring at it!
Eventually clothes will be an option. They are not essential, but as I mentioned before, they are kind of fun. Makes you feel a little bit normal. Many don’t even know that clothes are available, but there are a handful of places where you can find them for micro preemies as small as 1 lb. At first, when they are very tiny, you will want to look for things that are NICU Approved. Usually this is a little shirt that opens up completely to flat so that in case of urgent need, the shirt can be removed without moving the child. They are pretty neat and you will find them in lots of fabrics and a slight variation of styles.
As your preemie grows the options for clothes will open up greatly. You will find things that are NICU Friendly, meaning that consideration of monitor leads, wires and tubes has been made.
So that is the brief list of some of things we used. Since then there have come to my attention some products that I think have great purpose in the NICU.
One is Zakees helping hands. Remember I said that we would spend literally hours cupping our hands around Ava? Well in my mind there is still nothing better then the actual touch, but lets face it, you can not be there 24/7. So the mother of a preemie herself came up with this neat idea. She created helping hands. They are soft hands filled with tiny beads that can be moved around for weight distribution and cupping around your preemie while you are not there! Mom can start by sleeping with the Zaky for a night or two in order to leave her scent on it which even your micro preemie will be able to smell. So even while you can’t be there, your preemie will have the feeling of touch and mommies scent with them at all times!
The last thing on my list, is something I recently came across. They are called Tummy Tunnels. This is a product that some may need to have follow them home. Sometimes NICU babies must be fed through a tube that is attached right to the outside of their tummies. As you can imagine, that might make finding appropriate clothes somewhat difficult. With Tummy Tunnels this will no longer be an issue at all! Tummy Tunnels are little patches that are ironed right on to whatever piece of clothing you choose. The patch comes in really cute designs and has a hole in the center for the tube to pass right through the article of clothing, hence the Tummy Tunnel. How brilliant is that! |
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In conclusion:
As the parent of a preemie your life is going to be a bit more challenging at least for a while. For some of you, the challenge will be greater and may last longer. But you can do this. You are not the first and you unfortunately will not be the last to walk this path. Because of that sad fact there are lots of places where families like us have congregated on the internet for support.
One of my recommendations in www.inspire.com. Lots of preemie family members there. You don’t have to talk to anyone if you don’t want to, but at the very least, go there and read. Hear what others are going through so you will know that you are not alone. You will hear inspirational stories and sometimes hear from those, who there path took them down a very different road. You will see how they cope and try to pick up the pieces of their lives. And sometimes if you feel up to it, encouraging others who have not been where you have been is very healing for ourselves.
So, I am sorry that you are having to look for this kind of information, but I am hoping that in some way I have been able to help you understand a little about what is ahead. No matter what your journey, the day you get to go home will hopefully be filled with joy. I wish you all the best. Rebecca |
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