I’m actually writing this on Dec. 30th but we have little written thoughts of what happened the day Alyssa first got sick so it’s all in our memories but it was such an intense day that it’s embedded in my memories pretty clearly. It’s a long read however, so get comfortable.
I went to bed Saturday night starting to worry about Alyssa being so sleepy and not really feeding fully. I decided we’d just see how she went through the night but if she wasn’t feeding well we’d take her in to hospital in the morning to see if they wanted to feed her with a tube and put her under the phototherapy lights. I was starting to get a bit of a pain in my tummy and feeling uncomfortable so I was hoping we’d have a good night.
Alyssa woke on her own at about 1am and had a very very quick feed, then again in half an hour and then again at 2. Each time she woke I’d put her to the breast and she’d suck maybe 5-10 times and then fall asleep. It was just like what was happening with Liam the day he got sick with his jaundice and I was pretty convinced she’d need to go under the lights. I was actually starting to really worry that she wasn’t going to make it through the night, not feeding properly but the pain in my stomach was getting really bad. I couldn’t sleep and it actually really hurt to be sitting up still feeding Alyssa but I was so worried about her I persevered. I started pacing the house with the pain and I couldn’t lay down, sit down or even stand without crying from the pain. I was up in the middle of the night searchign online for reasons and the most likely candidate was gallstones which does run in my family after pregnancies but I tried to convince myself it wasn’t. I was thinking it might have been to do with the stress of Alyssa not feeding properly. (It turned out the pain was the same pain I had the night Alyssa had surgery a few weeks after – gallstones).
I’d started wondering if I should take myself in to the emergency department at the hospital, and figured I could probably take Alyssa with me and get us both sorted out at the same time. If Mum had still been there I would have already been in at the hospital but I didn’t feel I could drive myself there and I didn’t want to wake Liam. Tristan was staying at a friend’s house for the night. After the feed at 2am and realising Panadol wasn’t making any difference to my pain which was getting worse, Warren got me a heat pack to see if that helped. It didn’t make the pain go away but I could lay back and focus on the heat instead of the pain.
The next thing I knew it was 7am and the pain was completely gone and we hadn’t heard boo from Alyssa. I knew little babies should be feeding every 4 hours but 6 hours was probably the maximum so I jumped up and picked her up to try and get her to have a feed. She was all rugged up for the night but when I gave her a kiss on the cheek I noticed her nose was icy cold but it had been a relatively cold night so I brought her out to the loungeroom and got cosy on the couch. Liam heard us get up and came out with us so I got him some breakfast and put a movie on for him. I tried to feed Alyssa but she wasn’t interested in waking to try so kept my top up, rested her against my breast and threw a warm blanket over the top of us. I decided that as soon as Warren was awake to watch Liam I’d take her into the hospital.
I freaked out when Warren came out and woke me up and I found Alyssa still nuzzled against my breast, Liam still watching his movie and it was now 9:00am. Alyssa had now gone 7 hours without a feed. I went and got dressed and tried to syringe feed Alyssa again. I expressed 10mLs into a syringe and tried to slowly squirt it into her mouth but it all just dribbled straight out the side. I’d be surprised if she even got 1mL. My heart was pounding – I just knew she wasn’t right so I called the maternity ward at the hospital to ask them if I should bring her up there or go to the emergency department.
A midwife, Tina, answered. She had looked after me while I was sick in hospital – I remembered her voice. I told her Alyssa hadn’t been feeding and that she’d gone since 2am but even those feeds weren’t good ones. I said she was a little cold but very sleepy and unresponsive. Tina asked if I was part of the early discharge program where the midwives visit me at home for a few days and I said I was but that no-one had come out to see me the day before. She did some hunting and found my name was registered for the program but I hadn’t been added to the visit list so she would send someone out to see me later that day. I told her I was quite worried about Alyssa and could she try and see if the midwife could bump me to first on the list and she said she’d try but it might still be a couple of hours before they got to me. I hung up the phone and cried – I just had this horrible feeling we needed someone to see her right away but put it down to anxious new mum nerves.
About five minutes later Tina called back, saying she’d found my file and realised that Liam had been brought back to hospital for phototherapy and it would probably just be better if I brought Alyssa straight up to the maternity ward for a quick check. I cried with relief and Warren decided he wanted to come in with us so we got Liam’s dirty bum changed, got him dressed and got into the car. I sat next to Alyssa and she didn’t stir once the whole way in to the hospital. I felt sick inside but was glad we were on our way to hospital.
I carried Alyssa up to the maternity ward where we met Tina. She ushered us into the observation room and we waited for her for a couple of minutes. She came in and had a quick look at Alyssa and asked me a couple of questions about her feeding. She took her off me and placed her onto a table and undid her babysuit. Alyssa’s stomach was pale and mottled and I suddenly realised she wasn’t well. I looked at Tina and she gave me a big cheesy grin and simply said ‘I’m just going to take Alyssa to a doctor for a quick check, just to be sure’ and she rugged her back up and walked out. I felt instantly ill. Her smile had seemed so fake – I knew she wasn’t telling me something and I started thinking we should have just brought her in through the night like I’d wanted to. Tina had Warren, Liam and I go and wait in Room 9 where I’d been staying while we were in hospital while she found the doctor.
As we sat and waited in Room 9 all these horrible thoughts began to fly through my head and I started telling myself off for not bringing her in when I first started to worry. We waited for about 5 minutes (it seemed like so much longer) and then two doctors came in to the room. I didn’t understand why the doctors had come to talk to us directly – again a wave of nausea rolled over me. The doctors, one was Rebecca who we would come to know very well over the next few weeks, told us that Alyssa was quite sick and they thought she might have an infection so they wanted to run some tests and put her on some antibiotics. I was stunned, wondering why they wouldn’t just put her under the phototherapy lights. Tania came to the door with Alyssa all rugged up, holding her tightly, and said she was just taking Alyssa into the NICU (Neonatal Intensive Care Unit) and suddenly everything just became very surreal – I realised this wasn’t just a touch of jaundice.
Rebecca explained that the most common types of infections that a baby would present for would be bladder infection, blood infections or the worst case, a brain infection, meningitis. This meant they would need to take some blood, get some urine via a needle inserted into the bladder and they would also do a chest x-ray to check for pneumonia. Perhaps the scariest was that they would need to do a lumbar puncture on her. They did suggest that we not be there for that as it would upset us and when she explained it was a bit like having an epidural, that’s when I first cried. They would pop a cannula into her veins and start her on the main antibiotics straight away so that they could start working because they probably wouldn’t get the results for a couple of days. These procedures would likely take half an hour so Warren and I took Liam outside to the little playground.
I am ever so thankful Warren somehow held everything together because I was starting to fall to pieces. I had brought my little girl to hospital for some time under the lights and a good feed and here they were sticking needles into her spine. Warren watched Liam on the slide and swings and I just sat there and cried and cried because I didn’t understand what was going on. I was a little naive to what they were really checking for and I asked Warren what meningits meant and when he told me how serious it could be, I cried all over again. I just couldn’t believe this was happening. We called our parents to tell them what was happening and my Mum offered to drive back up (after only going home the day before) to help us out with Liam as we knew I’d at least be in hospital with Alyssa for 5 days for the antibiotics. We waited outside for over half an hour and I was getting really worried, but just sitting on the swing in an absolute daze when the call came that we could go and see her. We raced up to the NICU and were let in.
Alyssa had been stripped off and was in a bed under a heater to slowly bring her temperature back to normal. She had a drip in her arm, running dextrose, and electrodes all over her to check her vital stats. A couple of days later we were told that Alyssa’s body had started to shut down and she had lowered her body temperature to 32 degrees to try and protect her brain. When we saw Tina a couple of days after and asked her to come in and see Alyssa she was so relieved that Alyssa was doing ok. She told me that she was so glad she called us back to come in to hospital because Alyssa wouldn’t have made it another hour or two like she’d initially asked us to wait – she told us in actual fact Alyssa probably only had minutes and we’d really just arrived in the nick of time. We obviously knew our little girl was sick when they put her into the NICU but that really hit home as to how bad it had really been. We also found out that her blood sugar levels were 0 which was almost unheard of. One of the doctors had seen 0.2, but never 0.
Everything from this point on became one giant blur. I remember every detail pretty clearly but hours and days ran into each other and I forget what happened when so I may get things out of order. I don’t remember how many times I cried over those first couple of days but I just couldn’t seem to stop the tears. I explained that I thought Alyssa’s feeding became worse after my milk came in and the doctors decided to restrict breastmilk in case that had caused the problems. So I began expressing breastmilk every 3 hours and storing it in the NICU fridge. I was desperate to feed my little girl but we just didn’t know if it would be ok.
On Sunday afternoon they did the x-ray to see if she had pneumonia (which makes sense now that we know her body temp had dropped so low) and they noticed she didn’t seem to have a thymus gland. I didn’t understand at all what this meant but I know Warren seemed particularly concerned and started asking lots of questions. This was the case over the next couple of days with me not understanding what was going on and Warren looking calm but worried and asking lots of questions. I’m still not sure if it was better that I didn’t know what was going on or not.
THYMUS GLAND (from Wikipedia)
In human anatomy, the thymus is an organ located in the upper anterior portion of the chest cavity just behind the sternum. Cells located in this organ and the cytokines they stimulate the production of T cells and are of central importance for their maturation. The thymus is of a pinkish-gray color, soft, and lobulated on its surfaces. At birth it is about 5 cm in length, 4 cm in breadth, and about 6 mm in thickness. The organ enlarges during childhood, and atrophies at puberty. Unlike the liver , kidney and heart , for instance , the thymus is at its largest in children . The thymus reaches maximum weight ( 20 to 37 grams ) by the time of puberty. It remains active only until puberty. Then with growing age , it starts to shrink . In old people , the thymus gland is scarcely distinguishable from surrounding fatty tissue .
At some point, they noticed that her liver seemed to be a bit bigger than it should be and Alyssa was sent to have an ultrasound on Monday morning. We were told that Alyssa had a fatty liver, as seen in adults, and they suddenly forgot about the thymus gland and became very worried about her liver.
On Monday afternoon, around 5pm Warren tells me, as I sat expressing milk, Dr. Dunstan, the head paediatrician, and about 2 other doctors and the NICU nurse all stood in front of us and started trying to explain how sick Alyssa was. I was struggling to understand what they were trying to tell us and stopped expressing so I could concentrate. And suddenly, completely unexpectedly, Dr. Dunstan threw a massive curveball at us and mentioned the word Melbourne. My head reeled and suddenly the room started spinning. I didn’t understand why they would even be talking about Melbourne unless Alyssa was really really sick and it suddenly dawned on me that she was – this wasn’t just some little problem, my little baby was terribly ill. I thought I might throw up. Dr. Dunstan kept talking but I just sat there staring at him. I was looking at everyone’s faces and I felt like I was the only person in that room who didn’t realise how sick she was. I looked at Warren who was looking at the doctor. I just searched his face for an answer, hoping that I might see him relax and then I’d know everything was ok but his face was so serious. I vaguely remember Dr. Dunstan told us there was no point sending us to Hobart when they would probably want to send us to Melbourne anyway, so they were making plans to get Alyssa onto an emergency NETS (Neonatal Emergency Transport Service) flight to Melbourne that night and suddenly the whole room just closed in on me and the tears came. I heard something about them needing Alyssa to be with the specialists and needing to do a liver biopsy – again I didn’t understand.I asked if she was going to be ok and Dr. Dunstan looked to the ground, then looked at me and said he just wasn’t sure.
I just cried and kept saying ‘I can’t go to Melbourne’. Dr. Dunstan left to get things organised and I remember the NICU nurse Marion asking if I was ok. I felt myself rapidly losing control, my head spinning, my eyes flooded. I suddenly couldn’t breathe and then the shaking started. I had completely lost control and I was struggling to breathe properly. I remember Warren holding me and telling me we’d be ok but I couldn’t move – I felt paralysed. I remember Warren being right in my face telling me to calm down but I just felt completely unable to respond to him and the next thing I remember is Marion right up in my face, holding my cheeks, looking me dead in the eyes and calmly telling me I needed to take a deep breath. I tried so hard to listen to her and do what she said but my body had other ideas. Someone got me a warm blanket and covered me up and Marion didn’t let go of me, insisting I try to breathe deeply. She kept rubbing my arms and telling me I needed to relax to stop shaking.I remember Warren asking Marion if I was ok and she just kept saying ‘she’ll be alright’.
I felt on the verge of losing my baby girl I’d longed for so desperately, that I’d endured such a nightmare pregnancy for. But oddly enough I was most distressed that I’d have to go to Melbourne and leave Liam behind. I was already missing him dreadfully having had nearly two weeks away from him. They couldn’t tell us how long we’d be in Melbourne for or if we’d come home with our beautiful princess. And I just felt that I couldn’t leave Liam behind. Everyone was telling me Liam would be ok but I was worried about me – I needed to be with him, my healthy little boy. I remember someone coming into the room and the nurses telling them to leave and then Marion decided that holding Alyssa might help me. I hadn’t held onto her since she came into hospital the day before so while she got Alyssa unhooked from all of the machines Warren was again right in my face trying to calm me down and get me to breathe. I was absolutely terrified for Alyssa.
They got me to take my top off and placed Alyssa against my skin but I still couldn’t stop shaking. I tried to focus on calming down so I didn’t shake her but I just had no control over it and I was worried I was going to drop her. I was completely hyperventilating and just groaning, crying in pain with it all. I really can’t properly describe it but I felt like I might die from the emotional pain. Marion and Warren still rubbed my arms and face and talked quietly to me, helping me to hold Alyssa still and gradually the shaking and heaving stopped but the tears didn’t, they just kept falling.
I reckon it was a good hour before I was calm enough to ask questions, to try and understand what had just happened and what was about to happen. They explained that Alyssa would fly out as soon as they could get a plane to us and Warren and I would be flown out first thing in the morning. We couldn’t fly with her as they wanted to send one of the doctors with her to keep an eye on her, again making me realise just how serious this all was. I just couldn’t understand how we’d gone from jaundice to an infection to some unknown problem she may not survive. I just couldn’t make sense of it all.
I was ever so thankful Warren had held himself together because I obviously hadn’t been able to. Warren went out of the NICU for a few minutes to get a breather and to call his parents and tell them what was going on. When he came back and I’d calmed down enough to finally stop the tears for a while I wanted Warren to hold Alyssa because I knew he was desperate to wrap his arms around her. Marion helped us move her around with all the cables attached and as soon as Warren was seated with her in his arms his tears started and I didn’t feel so silly for having lost the plot. I just didn’t know what to say when he told me he didn’t want to lose his baby girl – there was nothing to say.
I hadn’t told my Mum yet what had happened but I decided to call my Dad first. I cried the second I heard his voice and asked him if he could come to Launceston now. He asked what’s happened and I told him what was going on. I heard him shutting the car door before I’d even got off the phone to him. I asked him to go straight to our house to pick up Mum and the boys so that Mum didn’t have to drive herself and to bring them all straight here. Dad later told me he drove the whole way crying and somehow managed to get to Launceston quicker than he should have with a phone in one hand and a cigarette in the other. Bad Daddy!
I then called Mum and struggled so hard to tell her what was going on and had to ask her to do the terrible job of explaining to Tristan that his sister was gravely ill and he needed to come and say a possible goodbye. I called her back a second time to make absolutely sure she understood what I was asked her to tell Tristan and she said she knew and would talk to him. It was an absolute nightmare.
Warren’s parents had been up the day before to see Alyssa so he hadn’t asked them to come back up but after seeing him so devastated while holding Alyssa I wanted, needed them to be here for him as my parents were for me. SO I called Warren’s Dad and asked if they could please come up. He sounded pleased I’d called and said they had just been trying to decide if they should come up or not anyway.
The next hour was a bit of a blur until our parents arrived. They hadn’t been able to secure Alyssa a flight so we were told she would leave in the morning. It was after 8pm when my Dad got Mum and the boys to the hospital because the ward was locked up for the night and we had to get buzzed back in. Within a few minutes Warren’s parents had arrived. Generally only immediate family are allowed in the NICU but the midwives had made an exception for us under these circumstances, but simply asked that only 3 or 4 at a time be allowed in the room. I had my parents wait in Room 9 while I took Tristan and Liam in to see Alyssa.
Liam was tired and cranky from everything that had happened over the last couple of weeks and he really didn’t understand what was happening but I held him so tightly. I missed him so much and was going to miss him more. I’ve never ever seen Tristan so upset. It was clear he’d been crying for a while and he started again when he saw Alyssa. He was able to have a cuddle and my heart just broke watching him cradle her so tightly, not wanting to say goodbye. We gave him a minute to himself with her and went to see our parents. We all stood around the room hugging and crying, not really believing this was happening.
Next my parents came in with me to see Alyssa while Warren and his parents kept Liam entertained. They were each allowed a cuddle as well which I was soooo pleased about. They each got almost half an hour with her and just gently stroked her, kissed her and loved her. They then kept Liam happy while Warren and his parents had their turn to tell Alyssa how loved she was and hold her tight.
It was so hard watching them say their own private goodbyes and I tried to come to terms in my mind that this may be their last cuddle with her and it just didn’t seem real. I was so pleased all of our family had been able to get there.
When we’d all had enough cuddles and kisses we all headed back home so that Warren and I could pack our bags and we all sat around until well past midnight trying to come to terms with what was happening. My Dad hadn’t packed a thing with him, he’d just jumped in the car and left. Warren’s parents had packed very sparingly and had woken the night manager at a local motel to organise a room to stay. Warren had a couple of strong drinks and I didn’t because I was hoping I’d be breastfeeding still but I definitely wanted one. Once we’d packed we headed back to the hospital and tried to get some sleep.
Two of my brothers hadn’t met Alyssa yet. Casey and Danny had spent the afternoon with her the day after we got home but Bobby and Ricki hadn’t seen her so my Dad asked if they could get to Launceston in time would they be able to see her and the midwives said that would be fine. Ricki didn’t have any petrol money so a friend lent him some so that he could drive up. I think he got there late that night and Bobby was able to make it up early the next morning. They brought Tristan in with them the next morning and spent some time meeting Alyssa. They weren’t able to have cuddles but they got to touch her and hold her hands. I felt glad they were able to meet her before we went to melbourne but felt bad that Warren’s brother and his fiance, in Perth, hadn’t been able to see her yet and we started talking about getting them flown over to meet us in Melbourne.
We found out that there wasn’t a bed available in the NICU for Alyssa at the Royal Children’s Hospital in Melbourne and we wouldn’t be able to fly out until there was one available. They started discussing sending her to Adelaide as a back up option.
The next couple of days were a bit of a blur as we waited for a bed to become available and then for flights to be organised. I continued to go in and express milk every 3-4 hours and we spent a lot of time by Alyssa’s bedside just touching her and looking at her, thankful for every minute we had with her. I took a lot of this time to go back home and spend some time with Liam and just take a break from being at the hospital.
There was a fold out bed in my room so Warren stayed with me every night, getting up through the night with me when I went to express to sit with Alyssa. We didn’t sleep much, often sitting up through the night trying to understand what was happening, talking through possibilities.
One morning, I don’t remember which day, I was sitting behind the curtains expressing, seriously starting to wonder if I should even keep bothering if I wasn’t going to be allowed to feed her again. I was getting quite upset about it and had just about convinced myself to stop when Julie (I think) popped her head around the corner of the curtain and told me to stop using up all my milk. I stared at her not quite getting what she meant when she told me I needed to stop and go and feed my baby. I still just stared at her, it wasn’t sinking in what she was telling me. She told me that Dr. Dunstan had just gotten off the phone to the doctors in Melbourne and they think they had an idea of Alyssa’s problem and the absolute best thing for me to do was to feed her. I was blown away and just jumped up, leaving everything where it was, and went to grab her. I cried and cried as they placed her in my arms.
Alyssa hadn’t breastfed for a few days now and she didn’t know what to do with the breast so she really didn’t take a feed at all. She didn’t know how to latch on and just fell asleep in my arms. But I knew it would take a bit of time to relearn so I wasn’t too upset, I was just so thankful I was allowed to try. The doctors came in and tried to explain to us that they thought she had Glycogen Storage Disease and that she was’t allowed to fast so feeding her was the absolute best thing I could possible do for her.It sounded like an amazing outcome and everything suddenly seemed better. I later went home and searched for GSD on the net and scared myself silly reading all about it. Reading further blog entries you’ll find it wasn’t as bad as we first thought, and now, we’re not even 100% sure it’s the problem anyway but at the time it changed our lives significantly.
I honestly mean it when I say these days were the worst days of my life. Such a massive emotional upheaval – intense confusion, anxiety and grief tearing us to pieces. Supporting each other and asking questions seems to have gotten us through but I do remember moments wondering if we’d ever survive this. We have survived it and will continue to do so.
I may have left out bits and pieces but I think I’ve covered the majority of it. It’s been an upsetting, emotionally draining time reliving all of this. Every time we went trhrough those first days with doctors and nurses and social workers really took it out of us and we haven’t had to go through it again for a few weeks now, so bringing it all back up has opened some wounds. It’s taken me a long while to feel I could write about it all but I’m glad it’s all down now.Thanks for reading this far and sharing the journey with us.