A life update: sadness and light

To say the last 4 months have been filled with enough worry, fear and sadness to last more than a lifetime, is an understatement. I haven’t gone in to any detail here on the blog as finding time to sit down to write in detail what has happened has been difficult, but here we are, 3 months later and I finally feel ready to write.

The drama really hit our little family back on May 5th. We had been out for lunch and it had been a normal day; park time, fun, laughter and then home. No sooner had the door been shut, Florence was sick. Not just a little bit sick but a whole lot sick. This continued and continued for hours. She writhed around on the sofa in pain for a while and then would just curl up and try to sleep. We tried a water challenge with her (5ml every 15 mins), getting little in and often but after every ten minutes she would be sick again. It was getting progressively more yellow and by 10pm we just decided to go to hospital. Better to be safe, than sorry, right?

At hospital we waited for about 2 hours before we were finally seen. I explained her history, the ovarian torsion and operation at 9 weeks old. The small risk of repercussion (bowel obstruction) but I was told it was just gastro but because by now she was so dehydrated they would admit her. So, we were put in a room and she was left to “recover”. The next day she was no better. She was vomiting just as much. They decided to put a cannula in, which was so distressing for Florence and so harrowing for us. Her veins were so deep and they weren’t exactly gentle. Her little hands and arms were covered with marks and blood and they just couldn’t get anything in. They had too many people in the room, people there to try to distract her (a “play” team) and make her laugh. It was too much.

I told everyone to leave so could console my hot, angry and snotty sick baby and asked a dr and nurse to come back within an hour. An hour passed and they came back. There was just Florence, myself, the Dr and nurse. We got the cannula in. It was awful, but it worked.

We were moved to another room, further down the corridor as they were adamant it was something contagious and asked that we didn’t carry her out of the room and that we were clear about how we felt. We were worried, but we felt absolutely fine.  Jonathon was going home each evening and I would sleep on the bed next to Florence, urging her to get better. I was so confused as to why she wasn’t stopping being sick, despite the anti-sickness drugs she was being pumped with and the rehydration she was getting. But I kept being told that gastro bugs could last up to 5 days. On day 3 at 5 am I woke up and she was sat bolt upright in her hospital bed. She was smiling and said “I better now Mummy”. My heart broke with joy, I texted my husband straight away and the relief felt contagious. She said she was better. 2 seconds later she lay back, projectile vomited and started crying in pain. She turned to me and said “please mummy, don’t want to be in pain any more”.

Fortunately (and I say this with the utmost sadness), when the consultant did her round, Florence was vomiting and in obvious pain, her stomach was so distended and hard. It was a comfort that they saw her like that so that they could make a plan. But they didn’t. They just said they would continue to wait and watch. I pleaded that they just do some tests, an ultrasound to rule out anything with her ovary / bowel. The Dr said it wasn’t needed. I said it was. She said it wasn’t. I said it was, and if they weren’t to get her one I would have to consult someone to come in and do it privately (God only knows HOW I would have done that, but it was the only ammunition I had and I just wanted her to be better). 5 minutes later a nurse came back in and said they had an ultrasound slot within 15 minutes. Before going they needed to aspirate what was in her tummy so they wanted to put a tube through her nose in to her stomach. It was hell, Florence had to be held down. They weren’t fair, they were hard, forceful and it was hell to watch without tears streaming). As soon as the tube was in pure blood started pumping up and in to the bag. It was terrifying. It was chaos. My husband screamed at them to stop and get help. The nurses froze and panicked, they ran out. I ran out. Suddenly the consultant was in the room again, Florence was whipped in to ultrasound, then X-ray, then another consultant came in and told us that she needed a surgical team and that an ambulance was on its way.

Broken. I was absolutely shocked, appalled, bewildered. How? How the hell could this be happening to her again. My little girl, my precious little happy girl who had JUST got gastro sickness…..how was this now in the hands of a surgical team? How was I right that it was so much MORE than they kept telling me again. I didn’t want to be right, I wanted to be wrong.

The paramedics entered, they were great. The calm of a horrific storm. So kind, so concerned and so good with Florence and with me. My husband left to drive the car to Bristol.

[I keep having to take breaks from writing this as the emotion is still so raw and it’s so hard not to cry as I recall just how empty and lost I felt..]

Anyway, the ambulance ride was fast. So fast. The siren blaring and a real sense of urgency.  There was a Dr with us, a nurse, 2 paramedics, Florence and I. The paramedic in the back with us didn’t have a seat belt, she stood the whole way, monitoring Florence. It took only 30 minutes from Gloucester to Bristol to be precise. My poorly baby, strapped up to so many wires again, so brave. Blood still filling this bag, every possible idea of what it could be flying through my mind. She was still so grateful to be sat in the ambulance, so silent, just taking it all in. Weak smiles of recognition when spoken to by the paramedic and said “thank you” when they got her out of the ambulance. Her Daddy was waiting, and she was proud to see him there. She still talks about that moment “Daddy was waiting for me when I got out of the ambulance, Mummy”.

A surgeon, Juliette was waiting for her. A hardened pro and exactly what we needed. She didn’t show any emotion, she just did everything she needed to. She spoke about bowel interception and blockage and said she’d like another ultrasound. There was a chance that what ever it was could be fixed by putting air up through her colon…. those words filled us with hope. Albeit short-lived. So, I went with Florence, Juliette and the sonographer and sat in total silence watching the screen.  Florence was still and silent on the bed, her eyes were shut. She was above and beyond the point of pain. I didn’t know what to do other than hold her hand. I couldn’t bear to look at her, how had I not forced them to check earlier? How were we here again? It was crippling. I asked Juliette if she knew what she was looking at (I mean, ultrasounds are like looking in to space, to me, a minefield). Juliette said she (obviously!) did but that she didn’t want to talk to me until I was with my husband. Through thick tears I just said “please just tell me, will she need another operation?”. “Yes, she will. Imminently”.

Wheeled back in to the children’s A and E, my parents and husband waited for us. I couldn’t speak. I was going back to three people who at that point had the same hope that I had walked in to the ultrasound with.  I couldn’t bring myself to say the words “another operation”. Juliette was back in. She told us that there was a blockage, an obstruction in Florence’s bowel.. She talked about the chance of reconstruction, a stoma bag which she would then need to have for 6 months before having another operation to have it removed. The what ifs were pretty endless. I didn’t cry. I just asked the questions I needed the answers to. By this point I knew there was no other option. Florence needed fixing and this lady needed to fix her. She had to fix her.

They did another blood test, this time from her foot, which was again, awful to watch as she screamed and screamed for me. This was a test to determine the urgency of surgery. Ie. Did she need it now, this second, or could we wait an hour? I can’t remember the name of the test. During that time we were taken up to the Penguin Ward to wait, a dark, single room. Florence was whimpering in pain between sleeps.

An anaesthetist came in to see us. Again, the kindest, calmest woman. She held my hand and wiped my tears. Of course, this wasn’t new for her, she was meeting the same tearful parents day in day out. But her bedside manner was impeccable. It was exactly what I had been craving all this time. Understanding. I signed all the waivers. Juliette came in to see us again, she said Florence would be next in surgery within 30 minutes. So we waited. I lay on the bed with Florence and sang Baba black sheep to her over and over, what else could I do? What if I wouldn’t get this chance again? I memorised her every feature, I stroked her hair, I kissed her so hard and listened through tears to my husband crying quietly in the bathroom. Chelsea, her nurse came in. They were ready for her. I was allowed to carry her down. So I did. It was a long walk and the most awful walk I have ever taken. She was floppy and heavy. She was holding her bunny’s ears and my tears just flowed and flowed. I couldn’t believe what I was doing. I have experienced very few harrowing things in my life time but this was one of them.

We got to the theatre doors and my husband wasn’t allowed any further. I walked in with Chelsea and went in to the prep room to the theatre. A cold and sterile room, so bright but so cold. The anaesthetist was there and about 4 others. She gave me a chair and said they would be putting Florence to sleep and that please could I hold her head still and against my chest. I did what I was told. Florence woke and started crying “Mummy, please stop”.  I burst in to tears and the anaesthetist said “stop now, do not let her see you cry until she’s under”. She was right, I had to be stronger. I held her, I said “these people will make you better baby, bunny will look after you, I promise”, and they put something in her hand and suddenly she was completely floppy. They said “kiss her quickly”, so I did and they grabbed her off me and put her lifelessly on to the cold table and started stripping her clothes off and I was ushered out. I ran to my husband and I sobbed. My nose started bleeding, streaming blood and I ran to the bathroom and was violently sick.

We went out of the hospital and walked up the hills that surrounded the hospital in the city centre of Bristol. It was after midnight and I just couldn’t believe it. We walked in silence for 20 minutes before heading back to her room. By then we had been moved to another bed, next to the nurses station so they could watch and monitor closely. She was to be in a bay with 4 others. So we paced the corridors, up and down, up and down. Looking at noticeboard, but not taking any of the information in.

Suddenly I heard my name being called. My husband running towards me. Followed by a surgeon, still in his maroon scrubs. He was the main man. He had saved my baby. He said “she’s fine, she’s been stitched up and will be out within an hour once she’s come round a bit”. I grabbed him and just said “thank you so so much” over and over. She had an obstruction. The obstruction had been caused by scar tissue from the operation she had had on an ovarian torsion at 9 weeks old, an adhesive small bowel obstruction. Basically the scar tissue had broken away, somehow and adhered itself to part of her bowel, technically strangling it. Hence the vomiting. He said as soon as they went in, it was very obvious what was wrong. They removed the scar tissue from around the bowel, it re-inflated and all was textbook and straight forward.

I paced for another hour, each minute that past wondering why the phone wasn’t ringing for us to go down and get our superheroine. Finally the phone rang and finally Chelsea came up and said “lets go and get Florence”. It was, by now 1:30am. Again, I walked the same walk  with her and my husband and met a porter on the way. But this time, despite the fear, the worry and the future worry, I knew I was going to get my baby back. I got to the doors, and again left my husband to wait. In the same cold theatre room Florence was there. Completely out of it. Eyes half-open, but rolled and glazed. The anaesthetist gave me a cuddle and they were shouting Florence’s name for her to wake a bit more. She half came round, saw me, and then fell back asleep. That was all I needed. She was still there. We wheeled her back upstairs and I sat and held her hand and just watched her in a zombie state. The ward was dark but there were screams all around us. It was a ward for emergency surgery, orthopaedic, gastro-intestinal, urology, ENT and thoracic surgery. So quite diverse and a lot of very sick children.

The days that followed were long, slow and hot and the nights were even longer. I stayed with her 7/9 nights in total. The last two nights I spent in a hotel a few minutes from the hospital as I was beginning to feel the force on my body of what had happened. Florence was incredible, she was chatting away only hours after her surgery and was only on paracetamol by the morning. She wouldn’t wear a nappy, point-blank refused. So only 6 hours after her operation she was sat on the toilet. I can’t imagine what that felt like being lifted after such intrusive surgery, but she pleaded with me that she go to the toilet (commode). The pain team were quite surprised by her resilience. She had a long scar from her belly button down to the top of her pelvis. About 3 inches long which was covered with butterfly stitches.

One by one the wires and machines were being removed and by day 3 she was allowed some food. The first thing she had was a strawberry ice lolly. It was pure elation watching her little tongue licking away with joy. The sweetness, the hydration, the happiness. A few hours later she was allowed some yoghurt. Each time she wee’d, ate, drank etc was like the biggest milestone and my husband and I were pumped with overwhelming pride. By day 4 she was allowed to go in to the playroom and by day 5 she was walking, albeit like a new-born deer with legs buckling at every angle. She was so proud of herself. We were so proud of her.

She had one or two visitors every day which she absolutely adored and enough balloons to open a party shop. My parents came to see her daily too, and brought us food, clothes and necessities, we were are so lucky to have had them. Those closest to us really came together and helped. I am terrible at asking for help, but it was just there and done for us, and we are so grateful.

By say 6 the consultant said we could go home “tomorrow”. A daunting statement. What if? What if it happens again? What is the likelihood? There is a 2% chance of it happening again. Obviously if she is to be sick again, violently, over a few hours with bile, then I will be taking her straight back to the hospital. Usually to be accompanied by tummy pain. But, with children so young, it’s best to just seek medical guidance as early as possible. Since it happened, Florence’s Dr has been brilliant too. We have finally found one who really cares for her, and has seen her on a couple of occasions in the past few weeks when I’ve had a bit of a worry. Especially the time she said “Mummy my tummy hurts”. I mean, you can well imagine the fear that jolted through me. She had a follow up with her consultant, the fist appointment in August and I was in there for 5 minutes with her. They checked her scar, talked, pressed her tummy and then said “you are discharged”. We are to just carry on with life, normally. Because she’s fine. For now. Normal. It was horrid being back, seeing similar ashen faced parents walking around like zombies. Panic stricken and lost.

On the Sunday we were discharged we got home. I hadn’t been feeling good for days. I had been sick a couple of times, which I put down to being overtired and just shattered. I suddenly had aversions to almost every food I looked. Walking in to the bathroom, I decided to, on a whim, take a pregnancy test. Surely not. It was 5pm in the afternoon, it would undoubtedly be negative as in reality I would only be 2-3 weeks pregnant.

Two thick dark lines stared back at me. I burst in to tears. Not of happiness, or joy. But of worry, of sadness, of “what am I going to do”. My first born had just been through life saving surgery again, and now, I was pregnant. Never going to be a good time / perfect time to have a child but this couldn’t have felt like worse timing. We had been thinking about having another child, we had “tried” once, before Florence had got ill. But surely biology couldn’t be that kind to us, I had PCOS after all and my periods were 40-50 days apart……but clearly our biologies worked.

The days that followed were a bit of a blur as I was lost in Florence and the idea that this pregnancy would be or become anything just didn’t feel tangible. At all. We had picnics in the garden, picked strawberries, played in the sandpit and normal life seemed to just go back to…well….normal, I suppose!

That is until May 24, my birthday.  The food aversions really hit like a brick. I couldn’t even look at the kitchen without retching. And it was that afternoon that I started being sick. Not once, not twice, but dozens of times. Over and over. From 5 weeks pregnant I was sick up to 100 times a day, riddled with unshakeable nausea. With most sickness you get a few moments of relief but with HG sickness it is unforgiving. Constant. I would be sick with blood if I had nothing in my tummy as it was just so violent. But getting anything into my tummy was impossible. My blood sugars were through the floor low and I was slashing my basal insulin intake daily.  The days felt impossible but I knew my first job was being a Mother to Florence and that I needed to look after her. Despite feeling like hell.

By week 7 I was admitted to Gloucester Hospital with high levels of ketones. I had severe dehydration and could hardly speak. My blood sugars were normal but I was really poorly. I couldn’t keep anything down. I couldn’t even swallow my own saliva, so had to carry a plastic cup and a towel with me everywhere. It was absolutely vile. Weight was melting off me and I felt so incredibly low but mustering the voice to even say I was sad was impossible. Crying tears was impossible. A minute of nausea is horrific but 24 hours a day 7 days a week is another level of intense. After a night and day I was released. Only to be called back in the next morning to have a 6 week scan. They needed to check I wasn’t having twins or something more sinister. Indeed, there was just the one little heartbeat and hot tears tumbled down my cheeks. It was real and it needed me.

I was on one antiemetic (anti sickness pill) but it simply wasn’t working. Trying to swallow tablets was horrific, and practically impossible to say the least. I was forcing myself to eat something as despite the crippling nausea it did actually help for a short [shorter than short!] period, just to get the tablets in To give me 20 minutes to absorb what I could…. But the sickness and nausea continued, my mouth and face were red raw, bleeding and peeling and in agony. Florence wanted and needed me, and so I would be reading her stories at night in-between vomiting in to a washing up bowl, spitting into a towel. She didn’t care. She just wanted Mummy.

By week 8 I told my parents as I was really struggling. They dropped everything and came straight away and collected Florence and me, much to Florence’s happiness. That evening my brother drove me to Southmead Hospital, I was admitted again. This time I was in for 4 days. Florence was safe with her brilliant grandparents and having a lovely time.
They got right on top of the meds and sickness. I was given a lot of injections, not sure what they were but they made me feel a little better. It was a brilliant hospital and the ward and unit I was in catered for Hyperemesis. They knew it, they knew what was wrong and how to make it feel a smidgen more manageable. By the time I left I was on a concoction of 3 antiemetics (cyclizine, ondansetron and promethazine). I didn’t feel well, but I felt more normal than I had felt  in weeks. I was also taking thiamine and folic acid. I was able to eat and drink a little and able to walk around.

I could hardly look at my phone, I couldn’t read or write or do anything as it all made the nausea worse. So I would just lie and think. Think about what our family had been through in the past weeks, of what I was doing, whether I should be putting my body and Florence through this pregnancy? Maybe they were selfish thoughts looking back but after what we had been through with Florence I just craved normality and an end to hospitals. What came with the tablets was the worst constipation (I’ve always said this blog was warts n’all) and some very very vivid and not nice dreams.

My 12 week scan was fine. All normal. I went in with trepidation and believing for certain that it wouldn’t really be there, but it was. Florence came along with me, much to the frustration of the sonographer, but I didn’t have an option, so she ate some snacks and watched on the big screen, the strange thing in Mummy’s tummy. To that point she believed there was just a “bug” in my tummy that was causing me to be so sick.

That afternoon I told her that I was pregnant. That I no longer had a bug in my tummy but a baby. There was no turning back now, both my babies needed me.

Hyperemesis this second time round was far harder than the first time. Because I had Florence to think about. To cook for. To love, to read to, to bathe and to put to bed. My husband doesn’t live with us during the week so, despite him being there as much as he could be, and he was, it was still very much Florence and I. And it was hard. Really hard. However, I am one of the lucky (haha, just the idea of the word lucky and hyperemesis are unmatched!) few who don’t go through the whole pregnancy with it. By week 13 I was down to being sick just in the morning. Still riddled with the nausea but it was more manageable. The balance of the three drugs really helped. I was having semi normal days. Still spitting constantly, disgusted by myself but there was no escaping it.

By week 14 I had managed to reduce my medication a little but was still very nauseous and sick in the mornings. I had to go up to the Lake District to do a talk at a food festival. I managed to get through by chewing a lot of gum, relentlessly. But that evening I was violently ill and all of the next morning. But finally at the end of week 15, the sickness, nausea and tablets stopped altogether. I was free of it. We decided to get a gender reveal scan at week 16. I wanted to know and I wanted Florence to know. She was adamant it was a baby sister and given the similarity to my first pregnancy, so was I.

The day before, we made two cards, one with a pink elephant and one with a blue elephant. It was so fun watching her paint them, and put crafts on them. She was proud of her creations and new which one was for a boy and which one was for a girl. We took them along and asked the sonographer to put “what it was” in to the envelope which was addressed to Florence. Once we left we went and sat in Imperial Gardens in the sunshine and let Florence open it. It was so special watching her open the envelope and shout  “It’s a baby girl Mummy”, “I going to be a big sister”. Ecstatic. She was so so happy. How lucky I suddenly felt to be given the gift of two children, two girls. In all the dark days of May with her operation and then my sickness all through June, suddenly July had brought some light. Some hope.

So, that’s pretty much where we are. I had my 20 week scan last week and everything is ok for now.  I have a consultation appointment on Monday and from here the scans will pick up and the appointments. To this point I haven’t been seen much and my diabetes has remained very well controlled. It is the least of my worries if I am honest. I have an HBA1C of 34, I am taking low dose aspirin, multi vitamins and eating my normal low carb diet. I am unsure of my hospital at the moment and I am going to make a clear call after Monday’s appointment as to whether I stay there or move. I am lucky to have full support of my GP and some wonderful people who can help me if I need to make that switch.

I have felt this baby constantly since week 17. She moves a lot! I can see her through my tummy already and my husband can feel her if I put his hand on my tummy. Apparently my placenta is at the back so I will feel her more. The plan at the moment is to go to 38 weeks gestation, like with Florence. But, as with Florence, I appreciate that anything can happen and I am not as naive as to believe that life will just be kind and let us float through with no problems!

So for now, we wait. Florence turned three a couple of weeks ago and is flourishing. I am continuing to nourish my body with good food and I continue to keep my blood sugars in as normal range as I can. I still can’t even sip plain water! I can only drink ice-cold sparkling…what a ridiculous first world problem to have, hey. I have put on all the weight I lost and I am definitely much bigger this second time round, then I was with Florence, but that’s fine. I haven’t had any cravings and I am finally back, this week, to exercising.

I will aim to do a 2 weekly blog update of pregnancy. Like I did with Florence. So if you have any questions, please do message me and I will make sure to answer them.

So, 4776 words later and you have made it to the end. Thank you so much for reading, for the love, support and encouragement you give me across social media and through comments here on the blog.

E x