Matilda arrived at PCH via the Newborn Emergency Transport Service (NETS) on Monday 6 September, she was just 5 days old. We weren't allowed to travel with her so we made our own way to the hospital and all I remember was focusing on finding the green lifts and getting ourselves to level 3. When we arrived we were greeted by a beautiful nurse, this beautiful soul we would get to know over the next few days as she introduced us to the PCH NICU. Once Matilda was settled, Rory's mum was allowed to visit her and have her first cuddle which was amazing.
The game charger for us was that PCH have parent accomodation on level 3 as part of the NICU ward, we were offered a room which took a weight off of our shoulders, we no longer had to travel 40 minutes each way to visit Matilda. This room was literally located right down the corridor from bed 29 where Matilda was admitted. Staying this close allowed for me to feel more connected to Matilda and my milk finally came in after days of expressing. The second day that we were in NCIU I remember the doctor asking how the first 24 hours has been and if there was anything that he could help us with, I just simply said thank you, getting to stay this close is amazing.
The days were filled with many tests and scans, so that the medical professionals could piece together a solid picture to plan her care moving forward, we learnt that when a baby is born with one congenital issue they look for another and once a second is found then they suspect a syndrome. The suspected syndrome that they were looking at a micro array was something called 22q11 deletion or DiGeorge syndrome. Matilda had multiple blood tests each day, on day two she had ultrasounds on her brain and kidneys to check their function and look for any defects, all came back within normal parameters, great news!
We were told that Matilda would never suck feed competently enough for her to gain enough nutrition and that she would be NG Tube fed long term due to her soft cleft palate. This decision was made before she was actually offered an opportunity to see if she could suck. We started with a dummy that had some expressed breast milk and by day two the feeding team was confident enough to say to us lets give suck feeding a go. So her feeding team came by and gave us a squeeze bottle to help Matilda learn to feed. She started with tiny volumes 2-5mls, that was all that she would manage and then we would use the NG Tube to offer a top up feed. Then one morning, when she was 11 days old, by surprise she took the entire 20mls.
We originally were transferred to PCH for the Plastic Surgeon to create a plate for Matilda's soft palate, but due to the size of it the decision was made to not make a plate for her and the option of surgery at 9 months would be the plan.
The days in NICU were a bit of a blur that just mushed into one. Rory's brother flew to Perth in the hope that he might receive special approval to enter NICU and meet his niece, after two days of waiting permission was given and he was allowed to visit her. She was 5 days old when she got to meet her Uncle. He was pretty stoked that he got to come and meet her too.
NICU is very goal orientated, each morning on the ward rounds the team lead by a Consultant make the plan for the day, the plan can include the tests or scans that they want action for the day and the general direction that we are heading, these daily ward rounds can be both very positive and frustrating at the same time.
The next milestone that Matilda needed to hit was maintaining her own body temperature so that she could graduate from her Humidcrib also known as an incubator or isolate. This is a clear plastic box that provides a warm, controlled, clean, enclosed environment where the baby can be easily observed. It helps protect the baby from infection and excess handling, and prevents them from using vital energy/calories to keep warm. Once she graduated from her little house as we fondly called it to the bassinet this would mean that she could have her first bath provided that her temperature was stable for at least 24 hours. On the 7 September when she was just 5 days old we made the big step and Matilda graduated from her crib, her crib stayed right next to her for the next 24 hours incase she needed the additional support, she didn't and she managed her temperature like a champ, so to celebrate a week earth side Matilda got her first bath, which she loved!
It was at about this time that Matilda got her nickname Boujee, given to her by our two favourite nurses, this was because of her love of the finer things in life like clean linen plus the addition of the beautiful wardrobe of 000000 & 00000 clothes that Rory's mum and brother had purchased for her.
Before we knew it our babe was already a week old, it was the first milestone that really made the NICU journey feel abnormal and I desperately wanted to get out of hospital and back home to Esperance, we had already been away from home for 4 weeks at this point. I wasn't sure how to feel or what to do, but one of the gorgeous nurses announced that it would be craft day and she very promptly came back with the tools of the trade to create hand and feet prints for us.
Day 8 was the day that my world came crashing down, it all hit me. Our baby had joined us earthside but now we had list of uncertain things ahead that we would have to find the courage to face together, it was nothing that we had prepared for and it was overwhelming. Rory headed off to the WA Fire & Emergency Services conference, an event he had committed to prior to Matilda's dramatic arrival. For the first time since the chaos erupted the week prior I was alone in the hospital, it was surreal. I had to meet with the feeding team who were reviewing Matilda, this team had previously said that Matilda would never suck feed, they were scheduled to come at noon.
Just before noon my nana unexpectedly arrived in NICU, she had managed to make it past the receptionist and get into our room, she enjoyed some cuddles with Matilda and then the feeding team arrived. They didn’t offer any assistance they just stood and watched me try to encourage Matilda to feed, the teats leaked all over her and I asked if there was a solution, they didn’t have one. I am a problem solver so I instantly wanted to fix this for my baby, the review was complete and their final comment was that she wouldn’t ever get enough nutritional value from suck feeding so would remain NG Tube feed for the future.
I was a mess, I couldn’t stop crying I felt so useless. So I left the hospital and went to have lunch with my aunt and nana. I felt like I was suffocating in the hospital. We ate lunch and then they kindly took me to a couple of shops to find some bottles and teats that might suit Matilda better. I rang Rory and he decided to come back to the hospital after the conference to see us. I was so overwhelmed I couldn’t stop crying, every team had a different opinion and it didn’t feel like anyone was on the same page anymore, then the doctor on shift reached out and asked did we have any questions so we told her how we felt, she was incredible and briefed us and made sure everyone was back on the same page for Matilda. She clarified that on Monday goals for discharge would be set, one doctor had said at least 2 kgs and the other said Matilda had to be at least 2.5kgs for discharge.
We settled for the weekend and each day felt just like the one before. I was due to go to the WAFES Awards night with Rory on the Saturday night and I really didn’t feel like I was going to be up to leaving Matilda, but with the nurses and doctors encouragement I headed to Rory’s hotel to get ready. I finally had my first hot shower in over a week, the water is temperature controlled in the hospital at like 36 degrees so they are just warm showers. I defiantly indulged in the long shower then I managed to put on a dress, heels and some make up and life felt a little bit normal for the first time in a while. The meal was delicious and I enjoyed a drink for the first time in almost a year then we headed back to NICU, it was a little weird walking into PCH fully dressed up and going to hold and feed our little babe. We also moved all of our things out of her room and to our new room on level 5, part of the Ronald McDonald accommodation in the hospital, we were pretty grateful to have a real bed a short walk and lift ride away from our little girl.
Then Monday morning came along and while the Consultant and team of doctors were doing their rounds they literally said, ‘why cant we get this baby home’, I couldn’t believe what I was hearing. The consultant said that once supports were in at home we could be discharged. Matilda weighed 2010grams. Rory had gone to a training course for the week as he was out of annual and personal leave so I quickly ran out and rang him to give him the exciting news. We were planning to be discharged!!
Monday was filled with more tests including scans and ultrasounds, blood tests, counselling and putting supports into place for Matilda in Esperance.
Tuesday came and the decision was made to perform one last echo before we headed home to Esperance, with the intention that we wouldn’t have to return for the follow up booked in two weeks -Dr Pankaj had hoped to push it 6 weeks. I knew something was up when I asked the ecologist if that piece should be there, she said that she couldn’t discuss the echo and I would have to wait for the cardiologist, turns out no it shouldn’t, I was looking at pulmonary stenosis. At about 1pm a meeting was called with a group of people from cardiology, I was alone, Rory was at the training course, in this meeting I was told that Matilda didn’t just have a large VSD she had something called Tetralogy of Fallot. WOW! We had decisions to make, stay in Perth or go home to Esperance. The Cardiology team were happy to support either decision but knew plans had to be put in place with Esperance Hospital so that when Matilda started having tet spells we had a management plan in place.
So the greatest escape ever was planned after just 12 short long days in NICU we were discharged to the Perth metro. We packed and said our goodbyes and snapped the iconic we are leaving NICU photo NG Tube feeding and medications in hand and we headed to the car. We popped her in the car and I couldn’t stop crying, Rory and I just stood and held each other in the middle of the underground carpark, I was so scared that we were taking our little babe home out of the hospital and yet it was all that I had wanted for days. We headed to my Dad’s place north of the river.
The plan was to stay in Perth until the cardiology appointment booked for Friday.
And just like that we had found the courage to be braver than what we thought we would ever have to be, we had survived NICU...