Our premmie journey started before my son, Isaac, was even thought of and has been the most terrifying and amazing thing that has ever happened to me. In 2012 I had had a hysteroscopy to check on some abnormal bleeding and while we were incredibly lucky that it wasn’t anything cancerous, it was found that I have a heart shaped uterus. I was told it could lead to pregnancy problems, so, being 35 we brought forward the date of our wedding and were lucky enough to conceive quite quickly.
At 5 weeks pregnant I was put in hospital with a small amount of light bleeding and a threatened miscarriage. The bleeding stopped and everything seemed to be progressing well. We announced our pregnancy at 11 weeks and 5 days at my boss’s request. I was on lighter duties and people were starting to ask questions. I had seen the obstetrician the night before and were told that bub was doing really well in spite of our rough start and was growing as it should be.
Two days later I went to the GP about a cat bite and found out that I’d had a missed miscarriage (with no bleeding or symptoms) a month earlier. It was clear to her that the baby had not been doubling in size as it should have been. I had an operation and we cried a lot.
We waited a long time for my body and heart to recover but during this time I had a blood test and found out that I had a very low anti-malarian hormone (so a very low egg reserve of eggs remaining) and we were encouraged to start trying for a second baby. This time it wasn’t so easy, so we saw an IVF clinic and made an appointment to have my few remaining eggs harvested.
A week before we were due to go back to the clinic, I felt like I was pregnant. I had a blood test that said that I wasn’t, but I still didn’t feel right. Then I had a doctors surgery urine test…still nothing. I rang my new obstetrician and asked if I could use a spare blood test referral that I had laying around from my previous pregnancy and he reluctantly agreed. It confirmed that I wasn’t crazy and in fact was pregnant, but the HCG level was dangerously low and not looking promising. I had repeat blood tests every 2-3 days for 4 weeks watching that HCG slowly climb but not double as doctors would hope. For someone who was needle phobic, it was strange to look forward to those appointments because I wanted to know that our bub was still there.
Then at 5 weeks, I was back in hospital with bleeding again. Of course, we thought the worst like last time. We bought a doppler for home use and used it religiously! Unlike last time though, this time I continued to have heavy bleeding from 5-14 weeks solid. I did bed rest at home to try and give our little guy the best chance but the doctors were not very optimistic. Because we had lost our last baby with no bleeding, this huge amount made me extremely anxious and we were hesitant to let ourselves get too excited about our impending parenthood.
At 14 weeks the bleeding stopped as quickly as it had started and it was like the clouds parted and I could finally see the sun. I was told things were looking good and we had non-invasive genetic testing done. My doctor informed me with that we were having a baby boy and I surprised my husband with the news by getting a big bunch of helium balloons and attaching a tiny blue onesie. We nicknamed the baby Blip, because he was a blip on the doctors’ radar and started to relax a little and enjoy the pregnancy some more.
Things seemed to be going really well and we were looking forward to seeing our bub in 3D at our 20 week scan. I knew when the ultrasound tech ran down the hallway for a second opinion that something was off. Tears were streaming down my face by the time she returned. Not again, I thought. It was revealed that there was only the tiniest amounts of fluid around the baby and that things didn’t look hopeful. He didn’t have enough fluid to exercise in or to swallow to strengthen his lungs and this is the period where that was extremely important. The doctors thought it was likely that I had a hind leak in my waters, but there wasn’t anything that they could do about it. I was put on strict bed rest which meant leaving work as a teacher, but couldn’t explain to my year one students my reasons for doing this as I had been avoiding telling them that I was pregnant in case the worst was to happen again.
It was scary to be home alone during the day while my husband was at work.
I left the front door unlocked each day in case the ambulance needed access our home and had a catchment container in the bathroom as my obstetrician told me the baby was so tiny and my funny shaped uterus meant that there was a risk of delivering him very quickly. He said that even if I could get Blip to 36 weeks gestation, my baby would only have a 1% chance of survival & I should consider palliative care so that I didn’t have to make that decision in the moment. It was also found that Blip had short long bones and that this might be indicative of him having a birth defect or syndrome.
It was about now when I started to feel really unwell. I had a constant headache, visual disturbances, swelling of the feet and face, high blood pressure & protein in my urine. I told my obstetrician that I was worried that I might have pre-eclampsia but he told me that they would have to put me in the record books if I had it so early on. My GP wrote the obstetrician a letter outlining his concerns so they sent me to Gold Coast Hospital who gave me steroids before quickly sending me to the Mater Mothers.
At the Mater I was put on complete bed rest and given a lot of meds to control, what turned out to be severe pre-eclampsia. I had 3rd hourly dopplers done and had ultrasounds every second day. We were told that days counted at this point and we needed to keep Blip in until at least 24 weeks or the drs may not attempt resuscitation at birth. Through all the ultrasounds it was discovered that Blip was a lot smaller than they would expect for a baby of his age and then that he had Intrauterine Growth Restriction. Each night during my midnight obs, I’d ask the nurse to change my gestational age on the whiteboard at the end of my bed. It sounds silly, but I was so determined to keep him in until a gestation where they would resuscitate him. My endocrinologist also discovered that I had sleep apnoea which may have been a contributing factor to the pre-eclampsia so a sleep study was done and I started using CPAP.
I made it to 27 weeks + 6 days (see, the days counted) and had my routine scan. It showed that the flow along the placenta wasn’t positive and he needed to come out…today! I was rushed to birth suite and given magnesium, which is meant to take 4 hours, but there was a non-reassuring trace so we were told that he needed to come out sooner than that. There wasn’t enough time to wait for an epidural to take effect so I had a general anaesthetic. My husband wasn’t allowed to be present and I was prepped for the procedure while still awake to minimise the time I was under. So, you see, even before our premmie was born, there’s been a journey
And then my whole World changed for the better and Isaac was born! He was a tiny little 29cm long and weighed in at just 600 grams- the same as a small bottle of water. When I woke from my anaesthetic the first thing I asked was is our baby alive. They wheeled me in to see him but I was so tired from the anaesthetic that I couldn’t keep my eyes open for long enough to see him properly through his steamy, plastic isolette. He was so tiny and red and too fragile to even be allowed to touch. It wasn’t the lovely delivery and skin-to-skin contact that I had spent my pregnancy hoping for, but he was still alive and for that I was so incredibly grateful.
The next few days were extremely busy with doctors and specialists coming in frequently to see me. All I wanted to do was be with my baby. The next few days were very difficult for Isaac. We had many, middle of the night, “quick, drop everything and come now” phone calls which were extremely distressing. The phone would ring, I’d wake up, pull off my CPAP, shimmy up the bed in pain the best I could after a classical c-section to reach the phone and by the time I answered it, I’d be a blubbering mess. Over the time that Isaac was in hospital, we had had over a dozen of those phone calls and a ‘code’ was called more times than I care to remember. For the first month I carried a bag with an extra large box of tissues to the hospital with us each day because it was embarrassing having to ask the nurses for yet another box of their tissues.
The doctors then found a hole in Isaac’s little heart, which completely broke mine. Thankfully an injection of ibuprofen seemed to fix that quite simply. It seemed strange to me as for my whole pregnancy I’d avoided caffeine, all medications, beauty products…you name it, and then my baby was on more meds than I could keep track of.
On about the 3rd day it was discovered that Isaac had suffered a grade 4 brain haemorrhage . Our neonatologist had to explain it over and over to me because we were so stressed that we couldn’t process what he was saying. He was extremely patient and said that it was in the occipital lobe in the vision part of his brain, but that didn’t guarantee that nothing else would be effected-he could have profound cerebral palsy or worse. We had to decide if we wanted to continue care or change over to a palliative care model. That was the hardest decision. My husband and I both desperately wanted to be parents, but we didn’t want it to be at the expense of our little boy having a horrible life.
In the end, he had fought so hard that we couldn’t give up on him, so that made the decision for us. I remember being so scared to watch his flailing limbs and imagine if his jerky in-utero-style movements were how he would always be. I had no other premmie babies to compare him to, I’d only ever known healthy term babies, and it was so hard to know what was ‘normal’.
With the questions of what to do and were we doing what’s best for Isaac still swirling in our minds, we had a phone call on the fifth day at 4am. You know when you’re called at 4am, that it can only be bad news. We rushed in and were told that perhaps Isaac’s little body was going to make that decision for us. He had developed Chronic Neonatal Lung Disease and was needing 100% oxygen as well as nitric gas to breathe. His oxygen saturations in his blood were critically low and the doctor said that there was very little else that they could do for him. They suggested that we call in the family to meet him if they hadn’t already and to get him baptised if that was something that we were wanting to have done. I noticed that the our room of the intensive care nursery only had one other baby in it, and I couldn’t help but wonder if that was because it was upsetting the other parents to see and hear me cry all day long. We were blessed enough to have Heartfelt photos taken by one of the nurses who was fortunately working in our room and I cried more than I thought was humanly possible. Our neonatologist paged a physio to come and see Isaac who was very familiar with him by now. She took out the tiniest little resus mask that you’ve ever seen in your life and used it to do cupping on his tiny chest. By the afternoon he was saturating the best that he had since birth and we knew that we had to support him to keep on fighting.
We then moved into Mater’s Reg Leonnard House (a bit like Ronald McDonald House) and stayed there for the next 5 months. My husband took 6 weeks off from work and after that would commute every day between work and visiting us. It was difficult living apart but there was nowhere else we would have wanted to be than with our little man. We were spending 15 hours + by his side and didn’t want to leave for anything. I pumped milk for him sitting by his humidicrib. My supply wasn’t the best for so many reasons…the placenta hadn’t been working, I didn’t have a third trimester, he couldn’t have any skin to skin contact with us, there was no latching and we were so incredibly sad, that it made it hard to get a letdown. Over the coming months I got mastitis 6 times but was determined that with the help of the fabulous lactation consultants I would press on. Any little bit would help his immunity and so I pumped for up to 8 hours a day, sometimes for as little as 6 mils. When I was pregnant I had researched all about becoming a milk donor and was a perfect candidate (never smoke, drink, do drugs, had all my blood tests done) but instead I was the very grateful recipient of donor milk for my boy.
Isaac had half a dozen blood transfusions after that and it was also discovered that he had stage 2 zone 2 Retinopathy of Prematurity in his eyes. He had weekly and sometimes twice weekly eye exams and was considered borderline for needing laser treatment to prevent blindness. Those eye exams were horrible-I would hear him from the other end of the corridor and he was always so upset afterwards that he would go backwards in his breathing and heart rate for a day or two.
Isaac moved onto CPAP ventilation and was finally weighing a kilogram. We were as proud as punch! Then one night he was extremely unwell and we were called in again. The doctor on duty had to turn his airway pressure up extremely high, and they reintubated him. It caused him to develop 2 inguinal hernias, but it saved his life, so we were still incredibly grateful.
Isaac was moved to intensive care level 2 at about 11 weeks after birth. He was getting much bigger in size but was still needing a lot of breathing support and the doctors were not sure why. He had experienced two collapsed upper lobes in his lungs by this point, but it still didn’t explain why he wasn’t improving. It was then that we found out that he had Pulmonary Hypertension. Dr Google told me about the poor prognosis that this often comes with so I asked our neonatologist who explained that the disease used to have a fifty-five percent mortality rate, but that since a new medication was introduced, it was now only sixteeen percent. Even sixteen percent was a hard number to hear, especially because our bub had severe projectile vomiting and found it hard to keep his all-important meds down.
The meds seemed to help though and after ten weeks in Intensive Care Level 2, we were transferred to PICU at Lady Cilento Children’s Hospital. We spent a week there and then got transferred to babies ward. This was a real advantage as I was able to room in with Isaac and do a lot more of the normal ‘Mummy things’. Here Isaac worked a lot on his head strength, core strength, grasping and tracking with his eyes. His breathing started to improve and he was able to spend some time on low-flow oxygen.
The reflux continued to be problematic and so he had a barium swallow test to check for a condition called Pyloric Stenosis. It was extremely traumatic for Isaac with four people needing to pin him down and despite my best efforts, he hasn’t wanted to bottle or breastfeed since. He is now fed exclusively through a nasogastric tube hooked up to a feed pump. We are experimenting with solids, but it is very gradual process.
We spent 13 weeks at Lady Cilento before being transferred to Gold Coast University Hospital. We were at the Paeds Ward there for about 6 weeks…but on the 10th of July, after 41 weeks in 3 different hospitals …he came home! We’ve had a lot to learn with using an at home feed pump that attaches to his naso-gastric tube, using oxygen tanks and administering meds but we couldn’t be happier and are so happy to finally be at home and living under the one roof again. Even the four loads a day of laundry (minimum!) can’t wipe the smiles off our faces!
We still don’t know what the future will hold for our little man…whether he will ever walk, talk, see or feed normally but we are doing everything in our power to help him and are seeing as many specialists as we can to learn more that we can work on with him. We feel incredibly blessed to have him in our arms and feel sure that our Angel Baby has been watching over our Rainbow.
We had the incredible privilege of having a photo shoot gifted to us by the amazing Amanda Maree Photography. Because Isaac spent the first 10 months of his life in hospital, we never got to have a ‘newborn photo shoot’, but Amanda has managed to do just that for us with our gorgeous little 11 MONTH OLD!!! We first met Amanda when Isaac was in the NICU because she was our talented nurse who cared for our little man (and us) on his darkest day. She took Heartfelt photos for us then and those are images that I cherish the most and look at when things are tough and I need to remember just how far our little miracle has come. Because of Isaac’s supplemental oxygen and him being fed through a naso-gastric tube, we don’t often get to see his whole face without it being covered in tape and tubes, but with Amanda’s skillful photography and nursing skills, she achieved just that-and now we have those images to look his beautiful face every day from here on in! Isaac is still very fragile and my husband and I knew that we couldn’t trust just any baby photographer to be able to monitor his oxygen and to pose him in ways that wouldn’t compromised his breathing. Amanda was able to do both of those things, and hey…how many photographers can insert a stomach tube back in at the end of your session for you? If anyone is looking for a baby photographer, I can’t recommend Amanda Maree Photography enough! She is the kindest, most talented photographer that I’ve ever met and is a photoshop wizard too-you can’t tell in our photos but Isaac has really sore little cheeks from all of his daily tapings and eczema on his tummy too, all of which she made vanish! Thank you so much Amanda Maree Photography, we cannot thank you enough for all that you have done!