1st RULE of the NICU: you do not talk loud in the NICU.
2nd RULE: YOU DO NOT TALK LOUD IN THE NICU.
3rd RULE: If someone stops breathing or goes limp, step out until the code is over.
4th RULE: Only three visitors at a time.
5th RULE: One fight at a time.
6th RULE: No shirts during kangaroo care.
7th RULE: Fights will go on as long as they have to.
8th RULE: If this is your first night in the NICU, you HAVE to cry.
Being a parent in the NICU is a culture many would not understand. Until somebody has a child in that unit they can have sympathy, but will never know what it is really like until they experience it themselves.
A micro-preemie is a born fighter. Many have tried to claim this title, but those people will never know what it is like to have all odds stacked against you from the first moment of your birth. Zoey was born at 23 weeks and the odds of her survival nationwide was 50/50, while at her current hospital it changed to 75%. The reason for her odds include the following; low birth weight, the inability to produce her own body heat, underdeveloped organs such as liver, lungs, brain, kidneys, intestines, an inability to breathe on her own, weak immune system, unable to produce her own blood, and delicate skin that can easily tear. That isn’t the entire list of problems a micro-preemie can face and each case is different.
Currently Zoey is on a prescription of caffeine to remind her body to breathe because her brain stem isn’t fully developed. A hearth murmur that she was born with finally closed after a second treatment of Ibuprofen. The murmur is from a valve above the heart that is open when the fetus is developing, but closes before birth between 8-9 months. This open valve mixes the spent blood with the oxygenated blood from the lungs giving the rest of the body a diluted mix of lower oxygenated blood.
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From the first day Zoey was born, she was a fighter. Born crying and moving, she was unusual for a micro-preemie of her age. A few days later she was being fed breast milk and was switched to a machine to teach her how to breathe on her own. Many babies her size only last a few hours or possibly a few minutes before being put back on the ventilation tube. Zoey lasted a week before submitting to bacteria that kept her from continuing on.
Each fight is different. Some fights end with discharge papers and a trip home, others are not so lucky. The third night Zoey was in the NICU I heard a scream I will never forget. It was the middle of the night and I had stopped in after work. Alone in the room with Zoey, I heard a scream in the unit that had me wondering if I would end up doing that myself one day. The next day I was walking into the NICU, a woman was leaving with bags of baby clothes and a suit case, but without a baby. She appeared heartbroken and lost. At the end of the hall was an empty room that had a baby in it the day before. I didn’t know if that would happen to us or not.
At the end of Zoey’s first week on the breathing machine she coded. Sarah and I had only been in her room for five minutes before the nurse pressed the blue button on the wall and the room flooded with staff. Sarah sat a chair against the wall looking at me wondering what was happening. The isolette opened up and hands entered the plastic room removing cords and tubes and Zoey disappeared behind the wall of scrubs. I saw her numbers dropping on the monitor and called out “It’s okay Zoey. Mommy and Daddy are here.” A nurse asked us if “Mom and dad would like to wait in the hall?” I replied, “I’m not going anywhere.”
I had seen codes before while working in the hospital. After 14 years, I can’t tell you how many I witnessed. Later on, in the ER, I could stand outside in the hall and eat a sandwich while seeing a chest pried open to shock a heart back to life. Now, I was terrified that my child might be seeing the end of her short life. For almost an hour, the staff worked on her and I continued to watch the monitor. In the end, the scrubs parted from the isolette and the head nurse working asked “do you want to see her?” I looked to see a very angry little girl gripping the ventilation tube taped to her face with flexing triceps struggling to remove it. I smiled and laughed, wiping away the tears. Zoey was fine, more than fine, she was letting us know she was in for a long and hard fight.
There hasn’t been a scare like that since. Zoey has her good and bad days. These tiny little people go through a fight that nobody will understand and in a confusing sense they will never remember. The parents hold and remember the stress and pain these children go through. Thankfully, like circumcision, these children will not have the memories for going through the various procedures they undergo. Less than a month old, Zoey had a spinal tap to make sure she didn’t have meningitis. An important part of a person’s life knowing where they came from. Zoey might not have memories of what she had gone through in order to come into this world, but she will be reminded when times appear tough. I hope this is the worst she will ever have to experience. When times get tough she can hopefully remember that things have been worse.
A common question I hear from parents and staff is “What keeps them going? Why do these little people keep fighting?” A preemie has something in them that many on this planet no longer possess, the desire to continue on at any cost. Those that survive never give up and are better fighters than anybody you will root for in a ring or cage. Unlike those athletes, these tiny humans fight for their lives just for a chance to experience what we take for advantage every single day.
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To Zoey and her family. I know that you will always have that fight and determination in you. I was born at 26 weeks, weighing 1.6 pounds in 1974, at that time it was survival of the fittest. I was fortunate, I lived in the hospital for three months in the NICU. I have been a fighter my whole life. I chose to push through the obstacles life has thrown my way and overcome them. It’s true that some babies make it and others do not for sometimes reasons unknown. I also know what it is like to lose a… Read more »
Micropreemies are not fighters. Some live and some die. It’s the circle of life. I have 2. You disrespect every woman who has lost a child. Finally, you don’t close a PDA with Ibuprofen. It’s Indocin or Indomethacin.
Ibuprofen can indeed be used to close a PDA, do your research please!
I’ve had three preterm deliveries, my first son at 24 weeks 1 day and my twin sons at 23 weeks 6 days. Rikley passed at 7.5 hours, Matthias at 13 days and Maverick is currently 51 days old and expected to spend at least six months in hospital. I nod and smile and say thank you whenever someone calls him a fighter but breaks my heart…his brothers were fighters too they just had bigger obstacles.
I haven’t faced the loss of a child. I knew that could be a reality when zoey was born. Maverick sounds like he is living up to his name. Thank you for sharing your story, it feels like a long road but he will be home before you know it.
There was no disrespect towards any parent that was intended in my article. Micro preemies are fighters and like some fighters they eventually lose a fight. Also, neoprofen is the pediatric version of ibuprofen used to close PDAs and has been the standard for the last decade.
It is ibuprofen, Mr.Gilman wasn’t wrong. There are new treatment modalities that don’t have as many side effects that Indocin has. I didn’t seen anywhere in his article where he disrespected anyone that has lost a child… He was in the position himself at any point of Zoe’s NICU stay.
His article was very well written..
Amazing story and absolutely true! My son was born 6 weeks early at 4lbs 4 oz. 16 years ago. He is now 6’6″ tall and hasn’t missed a beat. Those doctors and nurses are miracle workers and the kids are special fighters!
That’s not a preemie let alone a micro preemie.
Please do not insult the people sharing their stories. By older definition a preemie is a baby born early or under 5.5 pounds.
What is wrong with you? Why can’t you just be supportive of others. Also, 6 weeks early is most certainly premature, so not only are you rude, but you’re clearly uninformed as well!
I keep hoping zoey turns out as healthy as children like your son. Thank you for sharing. Time will tell.
Matthew, Thank you for your testament to Zoey’s strength. May you, Sarah, and your wee champion thrive and live long. I’m rooting for you all! Your story has me in tears. I was born two months premature and whenenever I think on the facts of my birth and first three months, I am amazed that I’m alive. I was 2 pounds 13 ounces at birth, not breathing (“blue”), and went into cardiac arrest three times in my first three days. It was the late 1950s, and I was isolated for three months — parents were not allowed, per the protocols… Read more »
14 years ago we went thru the samething. 23 2/7 weeker 1lb. Now in less than 6 months she will be drive. Don’t know which is worse. LOL. Prayers are with you and your little one.
Fights such as these are going on every day in NiCUs around the country. My sister was a neonatal floor nurse in a NICU for eight years and she’s told me stories such as these. There is another rule they have. If you are doing something that only requires one arm, the other arm should be holding a baby. I must correct a misconception. I’ve talked to many men who DO REMEMBER their newborn circumcision, myself included. Not a lot, but perhaps 20% of the men I’ve talked to about MGM. It’s not a well-formed memory like adults have, but… Read more »
This is awesome. So proud of you and Sarah! I can not even imagine what you are going through, as you said, but can only imagine. I hope you print these articles off and store them in a scrapbook for her to read when she gets old enough. Love you!!!
Better yet. Post on her Web page. Get her own url.