Mom Michelle Tito shares their journey of their micro-preemie Gemma Lily, who weighed only 715g at birth.
This is a long but beautiful read, explaining baby Gem's stay in NICU in fantastic detail. It's really worth the read if you have pre-eclampsia or a preemie in NICU. It also sheds light on the miracle of life, the incredible work of the NICU staff and the wow technology available these days. Then read Michelle's moving letter to the NICU nurse. Grab a cup of tea and dig in!
FROM A READER:
When I found out I was pregnant a fourth time, I was over the moon but at the same time a little nervous as I battled with very high blood pressure. My husband and I had already experienced the NICU as our eldest was born at 34 weeks, our twins were born at 28 weeks and our little girl was also born at 34 weeks.
Our twins spent 9 and a half weeks in NICU. Our little girl, the stronger one, got critically ill from a freak blood clot in her small bowel; she was operated on too late, and ended up with necrosis. I held her for over three days and when her organs eventually gave in and her heart stopped, she passed away in my arms. So having gone through quite a bit, we never expected another long NICU journey and nothing could have prepared us for what lay ahead.
A bumpy pregnancy
We found out it was a girl and were thrilled, she was healthy and growing. But at 16 weeks my blood pressure was climbing.
At 18 weeks I was hospitalised, then told to try and take it easy, which was challenging as I’m a teacher and had little ones of my own.
At 22 weeks I was back in hospital for bleeding. My heart sunk, my gynae put me on bed rest for a few days with meds, but she never told me how close I came to losing my baby.
24 weeks: back to hospital for two days to control my very high blood pressure. By now I had a lot of protein in my urine, baby’s growth was slowing down and my gynae said we were heading for pre-eclampsia.
Also read: What is pre-eclampsia?
At 25 weeks I was again admitted to hospital and this time my gynae said it was too dangerous for me and my baby to leave the hospital again. I just burst into tears, I was so scared. The NICU got ready for her emergency delivery and prepared a little space for her. A special Giraffe Omnibed was ordered. Each day she stayed inside me was a bonus.
I developed very bad HELLP syndrome with renal failure, low blood enzymes and a swollen liver. My head felt like it wanted to pop and I developed swollen membranes in my brain. I went for numerous foetal assessments during the week. The blood flow to baby was restricted and she was not gaining much weight.
The Friday morning I felt terrible, dizzy, sick... and the gynae and physician made the call. Today was the day our baby girl would be delivered. I was taken to the labour ward and given a magnesium sulphate drip to protect my little one’s brain during delivery. I was told it would help guard against bleeding on the brain and cerebral palsy.
There she was: our micro-preemie baby girl at 25 weeks
At 12:25 on 11 September 2015, little Gemma Lily Tito came into the world at 25 weeks gestation, weighing only 715 grams. She let out a few little squeaks, that’s all I heard, and she was whisked away. I went from theatre to ICU.
We nearly lost her after birth as her mouth was so small they battled to get the ventilator in and when they did, her heart rate dropped drastically and they battled to stabilise her.
My husband was allowed to see her only hours later once they had her stabilised. I only saw her briefly the following evening. She was tiny!
There were so many machines and gadgets, so many beeps and low lights, drips and wires and tubes and a central line through her navel. It was hard to see her.
She was on a ventilator to provide oxygen, various drips including heparin (blood thinner), a temperature monitor, a heart rate monitor, an apnea monitor to check her breathing.
She was translucent, as the “brown fat” under her skin, the layer that keeps us warm, had not had a chance to develop yet, so you could see her veins and rib cage. Her ears were floppy as the cartilage hadn’t developed. Her fingernails and toenails were absent. She was covered in hair (lanugo).
Her nappy was teeny tiny, it fitted a Barbie doll. She looked so fragile.
I was very overwhelmed to see this little person fighting for her life and I felt so helpless.
Fighting for survival
Her first poo on the night she was born was a huge celebration and that she was weeing was important. She was on a total parenteral nutrition (TPN) drip for nourishment.
Days later she started on 0,1ml of breast milk through a nasal tube. But her kidneys weren’t working properly, she had fluid retention and then weed too much. She was quite swollen at one point.
The TPN line was also a risk of infection so it was vital to change her to solely breast milk – and she tolerated it.
Her electrolytes were all over the place and had to be monitored be very closely. A few times she was losing too much nutrients and salts and it became dangerous so she had to have sodium infusions.
Her weight fell to 660 grams before she started picking up again.
Read: From Your Baby magazine, Your precious prem
She was given surfactant when she was born to increase the volume of her lungs. But her lungs were very immature and underdeveloped. She was on a caffeine infusion to remind her to breathe. Regular blood gas (ABG) tests were done, sometimes a few times a day, to check the oxygen levels in her blood.
At one stage she was on heart meds too as her heart was taking strain.
The special incubator, an omnibed with a super soft mattress that moulded to her body, helped to reduce fluid loss and was like being inside the womb. Water was added to keep it moist inside.
She went under the lights for jaundice. Her first pair of sunglasses!
On the Monday she had a brain scan and passed first huge achievement: no brain bleed. Numerous X-rays and scans were done on her to check her out.
Each day was another step closer to her reaching a new milestone. Every day was an achievement for us. And with each day she got a little stronger.
The ventilator and the big PDA
She was on a ventilator for 3 weeks but they couldn’t wean her off. They don’t like babies to be on a vent for longer than 10 days. We tried twice but each time she had to go back on within a few hours as she wasn’t coping.
She then developed right lung pneumonia and it was touch and go. She was on antibiotics and they needed to get her off the ventilator, but she had quite a big PDA opening (that’s a patent ductus arteriosus opening in her heart) – 1,8mm – that was making her so tired.
First they tried Brufen to close the duct but the meds didn’t help. You can only do three rounds before heart surgery is needed to close the duct. She had to be on medicine to also prevent the heart meds from giving her stomach ulcers. They scheduled to operate, but the paed called it off a few hours before the op as she didn’t feel comfortable.
Gem was then given steroids. The steroids came with possible risks and it was scary to decide what to do, but we were in a position where she was too little to have an op and we needed to get her off the ventilator to prevent further infections. The steriods helped to get her off the vent and she went onto a CPAP machine (performing Continuous Positive Airway Pressure) to keep the airways open. We were so proud.
She lay in this special incubator for about 8 weeks.
Holding her for the first time at 5 weeks
We touched Gem’s hand only at 4 weeks.
Just after my birthday I was allowed to hold her for the first time. She was 5 weeks old when she was placed on my chest for skin-to-skin or Kangaroo care. It was so emotional and such a special moment. She was so tiny, weighing no more than 850 grams.
My ring fitted over her leg and around her ear.
Changing her nappy for the first time at 6 weeks was so exciting! At 6 and a half weeks she had a wash-down bath in an ice cream container and at 7 weeks she had her first bath in a basin. When she reached 1kg we had cake and celebrated!
I would go there every afternoon after work and my husband and I went together every evening to see her. We would take photos daily and when she was older, took daily foot prints so we could watch her grow. We kept a memory and photo album of her journey and we could show our other children as they couldn’t understand why she wasn’t home yet.
She is a fighter. She was on so many drips that her veins collapsed and it was very difficult to take blood or put in a drip. Each breath was still an effort and used energy as she was learning to breathe on her own.
Her first special preemie dummy to encourage sucking was too big for her face, but she started enjoying it and we would get so excited to watch her sucking – another big milestone. Prems have not yet developed the newborn reflexes such as sucking, gasping and rooting, so when we saw Gem sucking we were very excited.
Slowly she gained weight and she was on fewer drips and monitors. Her feeds increased. She had numerous blood and blood platelet transfusions.
In the beginning she was weighed once a week, and then twice a week, and then every day. Each weight gain was a huge step forward.
Knitting pattern: How to knit beanies for little preemies in NICU (and where to send them)
Breathing by herself
So Gem went from ventilator to CPAP and then onto Vapotherm High Flow therapy, a new method of CPAP, with a nasal prong (cannula). I would try to keep my eyes off the monitors but it was hard, if she had an apnea you hoped she would correct herself and when she did it was such excitement.
She was given fats and FM 85 supplements to increase the calorie content of her breastmilk feeds to help her pick up weight faster. She moved to a normal incubator and started hourly feeds, then two-hourly, and then slowly moving towards three-hourly bottle feeds where she had to learn to suck and swallow.
At 1,7kg she moved to a cot and her feeds were now on 30 ml every 3 hours, a huge step from the 0.1ml every hour we started on. She still had the PDA so would drink for a bit and then be tired.
She was now able to maintain her own temperature.
I loved going to the hospital and holding her against my chest. Now that she was in a cot, I was able to dress her for the first time, she was starting to look like a baby. I was then allowed to bath her… I couldn’t wait to get to the hospital that Saturday to bath her, dress her and make her hair all fluffy!
She passed her hearing test. The eye guy and heart guy were there to check her heart and eyes regularly. The PDA was still big, and she then developed retinopathy of prematurity, which is when a baby is born too early and the retina detaches from the back of the eye which, if left, can lead to blindness. So after much decision she was taken to theatre for an eye op and laser.
Watch: A preemie's 80 days in NICU
She slowly started drinking and finishing bottles and the paed told us she could go home just before Christmas. She was weighing 2,170kg and feeding on 45ml every 3 hours. Our little Christmas present. Altogether Gem spent 3 and a half months – 99 days – in NICU. What a little blessing, what a journey, what a little Gem.
My other children are absolutely smitten with her and love helping. I think they couldn’t believe she was actually coming home, they asked every day when they could see her.
She has a little mark on her nose from the ventilator, which will be sorted out with plastic surgery, and she sees the heart guy soon to see whether they’re going to close the PDA. Her eyes are doing better and the eye specialist will decide whether she needs more laser. And she has a hernia which needs to be sorted out.
Read Michelle's open letter: Dear NICU nurse
She is going to have Synagis injections to help protect and build her immunity as she has a very low immune system. We had to go into hospital last week for two nights as she had picked up a virus. We are so careful with her and are very strict with hygiene and washing hands and touching her.
Gem has reflux and terrible colic but that is minor compared to what she has been through. She is growing beautifully. Here she is at 9 months, weighing a tiny 4,4kg:
She is still so little but a real busy body who loves to party with mom at night and sleep in the morning! She is an absolute miracle. They say big journeys begin with small steps. She is such a big miracle in such a little girl."
Photos courtesy of Michelle Tito.
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Read more stories about preemies here: All about preemies
Also read: When birth happens too soon – coping with the loss