Matilda's Life

At 2344 on Friday the 30th of October, Matilda entered this world. As expected (we'd spoken to Helen the neonatologist at 28 weeks) she was taken straight to the resus room. DH caught a glimpse of her over the curtain and though he didn't say anything to me at the time, he saw the sac around the omphalocele had burst. This was the first thing that made things more complicated than expected. If the sac had stayed intact, the bowel could have been either returned inside without surgery or if surgery was required due to the narrow base, this could have been put off for a couple of days. Because the sac had burst it became urgent to perform surgery to prevent infection.

The idea that she was outside of me felt quite surreal at this point lying there being sitched up. After a few minutes one of the neonatologists came out and explained that the sac had burst and they were going to have to perform surgery that night. DH was taken in to see her briefly at this point and when he came back I asked how she looked and with tears in his eyes, he said 'Perfect'. We were taken to recovery where I stayed for 20 minutes, we talked to the nurse and DH told her about how he'd put in the gas pipes in the hospital. The ob came in and told me from the caesar point of view things had gone well and as expected. The time passed quite quickly and they wheeled me into the intensive care nursery to see her for the first time. She was lying in an open cot with some sensors on her and ventilator and drip in her hand. She looked very pink which I commented on to Helen and she said that was something to do with the BWS. By this stage, the bowel outside her body had been wrapped in a plastic covering so didn't look too scarey. But she was definitely beautiful and appeared to be here safely at this point.

There quite a few people around between the nurses, neonatologists, and surgeons at this point. And we left to go upstairs to the ward. I think because it was all quite surreal and maybe due to the caeser drugs and because it all happened so quickly but the night passed quickly. The surgeon came to see us about 1am and explained the risks and DH signed the consent. The anetheist rang about 2am and DH answered some questions and gave consent over the phone. I dosed off and on and then we got a phone call at 4am - my heart jumped but DH got on the phone and the surgeon said the surgery had gone well. And when DH asked if more bowel surgery would be required, he said he was hopeful that it wouldn't be. So it appeared we were over the first hurdle. At 5am we got another phone call saying she was back in the nursery and stable. At some stage, the midwife had hand-expressed some cholostrum from me and got about 2ml which apparently was good.

The morning passed quite quickly - the midwife had come in about 8am saying the priority was to get me out of bed and down to the nursery to visit. So we had some breakfast. About 11am I was getting impatient and buzzed the midwife who said she was finishing some paperwork and then would be in. With her help we hand-expressed again and had lunch. By about 12.30 I was in the wheel chair and we were on our way to the nursery. We got in there and our beautiful girl was in the open cot on a ventilator with a lot of tubes in her. But she looked comfortable and was moving around. We spoke to Helen and she explained that the night had been much more dramatic that they had been expecting. Her blood sugars went extremely low after delivery and also her blood pressure. The hypoglemcia was expected as part of the BWS but it was much more severe than expected and the blood pressure issue wasn't expected. And on top of this she'd had surgery. But she was stable at this point and Helen said doing about as well and could be expected given everything that had happened the first night. This combined with how she looked meant we were excited and glad at how well she seemed. In hindsight I think things may have been more serious than we realised at this point. She was on morphine, TPN (IV food), glucogon (for the blood sugar), glucose, dompamine (for the blood pressure) and I think also getting hydraquarterzone at this stage. But because we'd been expecting most of this, it didn't come as a shock to us and we were just excited about our little girl being there. I think I was also relieved at this stage because although we'd been having heaps of scans, they couldn't ever tell for sure if the bowel in the omphalocele was still viable but now she was out it looks like the it was OK. We got some photos and talked to her. Steph (the nurse) showed us how to touch her but we were both a bit scared too because there was so many tubes in her.

DH's parents arrived about 2 and DH took them both in to see her one at time (max of 2 visitors at a time in the nursery) - they were over the moon to meet her. My Mum arrived straight from the airport about 5 and I took her down to meet her first grand-daughter. They were saying she was puffy at this stage and not really passing enough urine. I didn't really realise this was a problem and just thought it would improve over the next couple of days. Mum went back to our place and DH stayed the night with me. We expressed more cholostrum in the middle of the night and rang the nusery to check she was doing OK and she was still stable.

Sunday was our best day - she was stable and starting to pass more urine. We'd express and then go down to see her. DH even went back to our place for a couple of hours while Mum stayed in the room with me. We'd started thinking a few days down the road to when I'd be going home and we'd be coming into visit her in the nursery - even with everything going well she was still going to be in hospital for a few weeks. As Mum said in her letter about Matilda at the funeral - 'On Sunday she looked so good, we thought she'd be with us forever.' She was still on all the same medications but things seemed to be under control. The puffiness was going down a bit. Because DH and I saw her so often we didn't really notice the physical changes in her at much as our Mum's who were seeing her less often. DH's Mum commented to my Mum that her features were much more defined on Sunday.

On Sunday night, we had seen her about 7 and then after we'd expressed a couple of times, we went back down at 11pm. On glancing at her it was obvious things had changed, there was a drug trolly and extra people around her. My heart dropped and we headed over and noticed she was on a different ventilator - the CPAP one which made her shake as it worked. Steph and the doctor explained things to us:
* Her lungs had started bleeding - they didn't know why but it appeared to be slowing. This freaked me out.
* Her hypoglemia has reoccured - dropped to 1.6 which is not as low as the first night. They were trying a different drug called oxyitride at this point. They'd had to get the oncall endrochronologists involved because they don't normally have to go beyond glyogen and glucose to raise blood sugar levels.
* Her oxygen saturation levels had dropped so they'd had to change her to the new ventilator to give her more support.

We hung around for a bit and then went back to our room. Once outside the nursery I really burst into tears and although I couldn't bring myself to say it out loud, for the first time thought to myself 'what if she doesn't make it'. But in the room I was still crying and couldn't really think about sleeping but then Steph rung and said her next blood gas had shown her blood sugar levels were back up and the bleeding was still slowing. This made us feel much better - things appeared to be stable again and we went to bed feeling that things would be OK in the long run. But I did realise at this point that things were going to be more up and down that I had thought. I knew rationally that they'd be setbacks in the intensive care but when it happened the reality was much worse. We expressed in the middle of the night and rang the nursery and things seemed to be stabalised - we started to feel more positive about things again this point. In the morning we visited the nursery and Lucy talked to us about things, she explained that they'd been talking to the endochronogists and Matilda would only be able to stay on the oxyitride for a couple of days due to the side effects and to fix the blood sugar levels would need surgery to remove part of her pancreus. If her gut was working they would be able to feed her and switch to an oral medication for her blood sugar and put the surgery off for a week or two. Obviously this was our best option. Otherwise, she was going to need gut and pancreus surgery in the next couple of days. I remember looking at her and thinking 'she's not healthy enough to have surgery at the moment'. There were a couple of options to see if her gut was working - x-ray or a dye. The dye was complicated by the fact she was on a ventilator so they couldn't move her. So things weren't great at this stage but we were still hopeful her gut would be working (the surgeon was reasonable confident that first night) and we would get through this. They were getting the occasional clot from her lungs but the it all appeared to be old blood.

We went back upstairs and I rang our Mums to explain things had gone backwards during the night and she wasn't as healthy as the previous day. She was requiring much more support at this stage and wasn't really moving around much. They came in and we took them down to see her one at a time. So the day passed and things appeared to be stable again. At 1pm DH took some of my milk down and reappeared very excited about 10 minutes later - they were feeding her. They'd spoken to the surgeon and he was confident enough that there was no blockage in the bowel and we should try her on milk. This was great news and though we'd gone upstairs to try and get some rest, we were both so excited about this news we couldn't. When we went down next, I got to feed her (hold the syringe up) which was great. We were back to being very hopeful that this would all work out at this stage.

At 11pm things were still good and we told her to behave herself for the rest of the night and not cause any late night dramatics - this seemed to be when things went wrong. At 1am, we went down and she'd had another plummet. Her blood pressure had dropped again and the bleeding restarted - they were changing her over to a new blood pressure drug. And the last feed hadn't emptied from her stomach so she was off feeds at this point - Steph said they'd reassess in the morning. So things were scary again. We went back upstairs to get some sleep and were back down in the nursery about 5.30am and there were a crowd of people around her - it was obvious at this point things were bad.

Her blood pressure was still very low and wasn't responding to the medication, her oxygen saturation levels were dropping, and her lung was bleeding again and it looked like the other one had collapsed. We sat with her until 7 and then went upstairs and forced some breakfast down and expressed again and then went back down. Tuesday is all a bit of a blur and things seemed to be happening very quickly. After breakfast Lucy was there and a bunch of other doctors standing at the edge of the room looking over at Matilda and not talking much. Steph - the nurse who had been looking after Matilda was still there at 7.30 which I remember thinking was strange because her shift finished at 7. Before she left about 8 she came over and hugged us and told us she'd be praying for Matilda and would call that night to see how she was doing - this was another point at which I realised things were bad. They were all standing not talking and at some point Lucy came over to us and explained that Matilda was much sicker than the day before and they really needed to get her back to that point. She explained a doctor was coming to do a scan of her heart (the 2nd or 3rd one she'd had since being born) to see if they could see anything to explain the dropping blood pressure. We watched the scan and the doctor said her heart action was vigourous and he couldn't see anything wrong with her heart that could be fixed by surgery. After this DH rang our parents and told them things were bad - luckily they were almost at the hospital at this point. DH left to talk to his Mum and my Mum came in. Mum's a nurse so at this point she could see that the colour of Matilda had changed dramatically and things were very bad. We cried and talked to Matilda - there were doctors and nurses everywhere all morning.

About 9.45, I went upstairs with Mum to express and DH and his Mum came in. In hindsight it seems strange I was still expressing at this point but I guess must have still held some hope that she would pull through this at this point. As soon as I'd finished we went back down. Mum had called Dad and my sister at this point and told them to book flights over. I went back in with Mick at this point. I asked Solly (the nurse) how she was doing and she just said her bp was still very low and said she didn't really know what to say to us because she was so sick but we needed to talk to her. At this point it was really starting to set in that if things didn't change dramatically soon, she wasn't going to make it. They'd lost the lines in her hand at this point I think.

Lucy came over around this time and explained to us that she was very sick and that they were going to try a drug to close the valve that normally closes in the heart when babies are born but doesn't always for premmies. She explained that a possible side effect was that it could make the bleeding in her lungs worse but at this point, there was really nothing to lose in trying. And they were also going to do a blood culture to check for infection and start her on antibiotics. I asked what happened if this didn't work and Lucy replied 'your little girl may not make it'. This was the first time we'd heard someone say this out loud. I asked how long it would be until we'd know if this things would work and she said over the next hour or so. She then said that it's important for some parents of desparately ill babies like Matilda to get them baptised. DH is Catholic so we told them we did want a baptism and another nurse started organising this. DH wanted to know if they'd let his Mum back in for the baptism and was going to ask them but by this stage, I'd realised they were going to let them in. They'd put up a screen next to us to give us some privacy. DH went to the bathroom at some point and I sat talking to Matilda by myself and told her how much we loved her and how much we'd enjoyed having her in our lives even if she wasn't going to make it. DH and I sat there talking to Matilda for a while. DH also rang his Dad and sister at this point and told them they needed to come in. I can't remember when but at some stage I remember looking at Matilda and thinking I should be urging her to fight but thinking that if it was all too late then I didn't want her fighting and hanging on and suffering. Our Mum's came back in and we had the baptism. I wasn't really paying attention and was just crying, and touching Matilda. I do remember when they were saying the lords prayer which I don't know noticing that my Mum knows it which surprised me. It was about midday by this point I think.

After the baptism Lucy did another blood gas and it was just me and Mick there when she came over to us and told us it was really bad and it's now inevitiable that she was going to die and what she really needed now was something that she had never had - a cuddle from her Mum. They asked if we wanted to hold her on the ventilator or off so I asked how long they thought she'd last off the ventilator and Lucy said she thought it would be very quick because her oxygen saturation was so low (they couldn't even pick it up to get a reading) so we decided to hold her on the ventilator first. We got our family back in to say goodbye - it was the first time our brother in law had been in and he was distraught. They put her in my arms and each of our family kissed or touched her and said goodbye. DH sat with me on recliner and we spoke to her and one of the nurses took some photos. After a few minutes, we changed places and Mick held her for a few minutes. We didn't want to prolong things for her at this point so we said that we wanted the ventilator taken out. I asked if I could hold her while they took everything out and the nurses looked at each other and then said that would be fine. I'm so glad I did because the time between them taking the ventilator out and Matilda passing away was very short and we've got a couple of beautiful photos of us holding her and she looks very peaceful. Before they took the ventilator out, they warned us that the blood from her lungs would probably start coming out her mouth. So they removed the ventilator and there was maybe a couple of minutes before blood starting coming up. This sounds really odd but we've got a couple of photos of Mick and I wiping it away which are actually comforting to us because they show us being parents to Matilda which is something we had very little chance to be. Then the blood stopped and after a couple of minutes a nurse placed her in the cot and Helen confirmed there was no heartbeat. DH and I were actually quite calm at this stage and the rush of the morning was over and all the doctors etc had gone.

I have a vivid memory of the following but I can't remember what stage it happened at - it was sometime towards the end but I can't remember if what before or after we held her. DH and I were with Matilda and Lucy and Helen sat down and Helen said they were very sorry that they weren't able to save Matilda. I said 'that's OK - we know you did everything you could' (which we really believe) and Lucy replied 'No it's not OK'. Helen said we may never know exactly where things started going wrong with Matilda but she thinks maybe because her blood sugar went so extremely low the first night maybe it caused some organ damage she couldn't recover from.