17/01/2021
So a lot of you know River needs a transplant, but not a lot of you know why, or how I come about so I thought id write a little bit of Rivers story, also so she has something to look back on for all the details I will mostly likely forget in the future. So, here it is, my beautiful daughters story;
Me and Ryan found out I was pregnant in March 2018,
16 weeks me and ryan had our early gender scan! A baby Girl! I was over the moon, all healthy no problems! We had a healthy baby girl coming into the world! That we had made after!! After 20 weeks of an amazing pregnancy, no morning sickness, no symptoms! We then had our 20 week scan.. everything look perfect except her left kidney, which had a small amount of fluid on, the midwife said its most likely nothing to worry about and alot of babies have fluid on their kidneys. The "Normal" fluid on a kidney is around 7mls and Rivers left kidney had 7.5mls. Her right kidney was perfect and all working. The doctor then came to speak to us and explained they wasn't worried about her kidneys at all but they did say it was a sign on down syndrome but as its just over the "normal" amount they won't do any further investigations as my downs screen came back low risk but they did books us in for a 32 week scan just to be safe. After we reached home I decided to Google this fluid and the amount she had on her kidney. I was terrified my daughter had down syndrome because everything I read up on came back to this.
After a few weeks I felt a lot better about all the outcomes, never once thinking River would have kidney failure, noone mentioned it and no extensive Google searches came back to it (worried mum syndrome). The next few weeks went back to normal and my pregnancy was amazing again, I felt a lot more positive and had a gut instinct everything was going to be okay.
At 26 weeks I felt like I was leaking fluid, we went straight to QA to get checked over and I was put onto the monitor which came back fine, and then had a speculum. They told me my waters had not gone, and I was absolutely fine and then sent me home. This reassured me because well, why wouldn't it?
32 weeks come and I had my scan to check on my baby, we was so excited to see River again, as not alot of people get that scan. I was also terrified, my gut feeling was telling me everything was going to be fine, and her extra fluid on the kidney was just a blip. But how wrong i could be.. during that scan when the sonograhpher said, "excuse me im just going to get a doctor to double check something" my whole world stopped! I honestly thought my little girl had died by the way she looked. The second she stepped out of the room I burst into tears and I knew something was horribly wrong, the doctor came in and rescanned me. They then took us to a "quiet" room and told us, both my Rivers kidneys was fully covered in cysts, and they can't see her bladder meaning that's its likely they dont work at all. They then said we are going to transfer you to princess Anne hospital to the fetal medicine unit to be seen by a specialist but they wasn't sure when the appointment would be and someone will call us. No information on what anything means, no hope given to us that our baby may survive. They knew that all the odds was against her. That night we got a call for an appointment on the next friday, (our 32 weeks scan was a thursday before). A whole 8 days to fine out what is going to happen to on baby, luckily they called on the Friday and offered us a cancellation appointment for the Monday! 3 days to wait, but a lot better than 8! That was one of the worst weekends of my life at the time. Id never wanted to cry to much, but I couldn't, I had to be strong for ryan, my family and for my angel! I hid all my emotions and made out that everything was fine, and it was all going to be okay but inside I was dying, how could you not be knowing you might loose the baby youve been carrying for 32 weeks, that bond you've made, and all the scan pictures you've starred at for hours on end, picturing your life with your beautiful child.
Finally Monday comes and we go for our appointment with fetal medicine, they scan me again, and repeat basically was the doctor had told us before. That I had 0% water around baby, her kidneys was completely full of cysts, and no bladder was seen. They then took us into a room, sat us down and offered me a termination. They told me that River wasn't compatible with life, and even if she survived in the womb, she wouldn't survive outside. But you know the words that suck in my head? Compatible with life, that is how they talked about my child! The amazing beautiful bright little girl that I am growing. Like it was some video game that wouldn't connect.
There was no doubt about it, we was never going to give up on her, no matter what the doctors said and even though my stupid gut feeling was wrong before, I knew she was stronger than what they was saying, we decided to continue with the pregnancy, and find out our options. Next they brought it Dr Nagra, one of the peadiatric nephro doctors. She told us that due to rivers kidneys not working, and her having no fluid that its more than likely her lungs wouldn't of developped enough to sustain life. That the kidneys have such an important job in pregnancy, and it will affect her heart, lungs and she may have some deformities. She told us, IF of the of slim chance she does survive and her lungs have developed enough, she will need dialysis, she will be in hospital for atleast a 1 year after birth, and she will need a transplant but they don't have much hope due to the amount of fluid.
We had long chats with Dr Nagra,& Dr Richards(heart specialist). We was also told that one of Rivers heart valves was open, which is should of be closed. Not a massive problem in the scale of things and this would need surgery to correct, but it wasnt life threatening. We was told our how our life would be, and that we would be having our baby at Princess Anne Hospital now, because of their neonatal department. I was also told that the best chance for River to survive would be a C-section so they could whisk her straight of to neonatal. I told what would happen during my C-section, that they will take River out and see what her lungs do, if she reacts to oxygen, and if her lungs can handle the pressures of breathing on their own. If, she reacts they will then put her into a transportation incubator and take her straight to room 4 of neonatal to be put on a ventilator. If her she doesn't react, River would then be put onto my chest while they continue working on me, and we can say our goodbyes.
We was book in for another scan to check on her and see how she develops, and also to get our date for the birth of our baby!
12th October 2018 at 36+1 days pregnant!
Then four weeks was the worst weeks we had, in and out of hospital, daily visits to midwifes, and the assessment units as if I didnt feel her move in over an hour. She had a massive risk of crushing her umbilical cord due to the pressure and having no water. The biggest worry and next hurddle to over come is her lungs, but my gut feelings had me saying that her lungs was fine. I had water at 20 weeks and babies can survive after 23 weeks without water so why couldn't she?! I was still convinced I lost my water at 26 weeks, but they told me it couldn't be true because as she didn't wee, she didn't produce any.
So skipping to 36 weeks a 1 day. 6am, we woke up and drove to Southampton for the birth of River Ella-Rose. This could be the worst and best day of my life, all in one. 7am and I was called to get prepped, only me and ryan waiting in a room with 2 other women having their babies too. We met with the doctors and was told we would be going down last for my c-section so they had more time for everything. We waited for around 3 hours before the doctors came in and told us they was ready.
I was taken straight down, with Ryan, my mum and Ryans mum while our families all waited at home for the news. I had my spinal while ryan got dressed in his scrubs, and we was all ready.
Everyone wants to hold their baby the second they was born, but me. I didnt want to see her, I didnt want to hold her, I wanted her to be taken away as quick as possible because if I did see her, and hold her that means she's gone, and that I failed as a mother before I even was one.
At 11.19 River was born.. I heard her, what I thought was a tiny cry, which gave me so much hope was actually my poor little girl gasping for air. She couldn't breathe. She wasn't responding to oxygen. My midwife had taken some pictures at this point and came to show me my little girl, but I was terrified they was going to place her onto me, after so many doctors had told me she wouldn't survive, and that she wouldn't make it out the operating theatre, just as they was about to give up and pronounce my angels death, she responded. As quick as they got her out, she was whisked off straight onto a ventilator, and a quick stop by my bed to say hello she was gone. She made it out of that threate against all the doctors saying she wouldn't.
After I was checked over and ready I was wheeled round to see River, she had so many tubes, a special ventilator because she wasn't ready for a normal one. Her nos machine, her central line, bloods line, her heart rate wires, her temperature wire, noone should ever see their child in that position. Lying unconscious, swollen due to the build up on wee in her tiny body, it broke my heart 10 times over, you can't explain the feeling. But she was here! Yes, we still had a long way to go, but she was alive?!
About half an hour later the doctors took me out to a private room to speak with us. We was told due to the pressures of Rivers ventilator, they didn't think she lungs was compatible with life (there it is again) and to be prepared because she probably wouldn't survive the night. No hope given, the doctor said we had no chance, she wouldn't survive this amount of pressure, and her lungs would burst. They was too thin and weak. But again, she proved them wrong.
She survived the night, she wasn't out off the woods, but ofcourse every time we got a ounce of hope, the doctors had told us it was still the same position as yesterday and her lungs just couldn't take it and they had no movement on the ventilator if she needed it. 24 hours she was given this time. But after this proved them wrong AGAIN, we had a meeting with Dr Haq, another Nephro doctor, he said that even though they wasn't sure on what was going to happen with Rivers lung, she had no chance of surviving without dialysis, and we was given the option, to send River for surgery to get a PD tube placed into her belly for dialysis or to let her go, and spend our last few hours together in the family room. This was obviously a no brainer for us, and choose the surgery. Again, the risk of death is so high due to rivers lungs, and again we was told she wouldn't survive the weekend. On Sunday she had her pd catheter and we started PD that day, normally they like to wait 2 weeks to start due to it needing time to heal and if it doesn't it can leak. (Not going to bore you all even more with all the risks and medical side) due to how ill River was, they decided the best thing to do was to due her surgery in neonatal because moving her is just to risky. 6 hours later, she was out and we could finally be with her again! The surgery went well, and some small hiccups but nothing to worry about (in their eyes).
Monday had come and gone, and guess what.. my angel was still fighting, still proving all the doctors wrong. Her pressures had started to come down slowly on the ventilator, not alot but they came down.she had good days and bad days, and after around a week they finally stopped telling us that she wouldn't survive the night. Dialysis was going well until the Saturday when her PD catheter was leaking. She wasn't getting the dialysis she needed and her bloods had started to go back up, aswell and her ventilator pressures due to the build up of fluid. The next day it was surgery no. 2. Another new catheter, after another horrible day of waiting, the new one was in and again we started straight away. The new worry was that Rivers dialysis wasn't going to work as it didn't have time to heal. But it did for a few days, and on the Friday 2 weeks after she was born the catheter this time was leaking due to a blockage. So on Sunday, (because River loves surgery on sundays🤦♀️) surgery no.3. This time they created a new hole on the other side of her belly, this was her last chance. Dr Haq had told us about a trail taking place in Newcastle, a different type of dialysis for babies. We didn't think this this catheter would work, and alot of other things went wrong with river and her ventilator and draining through these weeks, so we was ready to pack up and move to Newcastle for this trail. This one last chance to fight for our baby!
But this catheter didn't mess up, it worked and it healed, and it had a small bit of leaking but it didn't need replacing!! They had finally done it, everything started looking up. River was coming down on her pressures, we even moved from the special ventilator to a normal one. We got rid of the nos machine, and we finally got a bed buddy!! Beautiful little Charlotte! She was so tiny, and rivers little next door neighbour.
The next few weeks was full of ups and downs, but she was improving.
After 12 weeks in neonatal we was ready to be transferred to Southampton general to the kidney unit. To our new home for atleast a year. River was finally able to move, I held my daughter for the 3rd time in her life. Nearly 3 months old, and I'd held her 3 times. I could pick her up whenever I wanted!! She was taken of her sedation and we finally started to see a little character. She was still on her TPN, and her feeding tube and dialysis. She still had her airvo to help her breathe but she was out of neonatal. Our next chapter 💕
So the next challenge was trying to find the right balance of fluid and dialysis. Making sure her bloods was normal, and the dialysis was doing its job properly.
This bit will be a bit more cut short because I put abit more on Facebook about this part of her journey.
After around a month in the kidney unit, river fell ill with Flu. She quickly ended up back on a ventilator fight for her life, and due to her lungs not being the strongest the flu really knocked everything she had worked for out of her. She was in PICU for 1 week, and was thankfully taken back to the kidney unit. She was back on arvo, she wasn't feeding by mouth. We had gone back to the start again but as quick as River goes down hill, she rungs straight back up. Not even a week later she was back onto just oxygen, drinking some of her bottles, she come of her TPN. We even got to take her out for a walk around the hospital!!
Our first outting, 💕 it was amazing!
4 months old and never seen the outside, shed never smelt fresh air, never saw a bird, never seen the sun or felt the wind! All things we take for granted she was finally able to do.
Over the next few weeks, we was able to go further afield. We visited both nanny's!
We got to spend 6 hours at Christmas out with our families, and spend the night with the nurses and other children who was in hospital, we spent new years watching the fire works from the top window, watching the whole of Southampton light up. We was told due to River being so damn strong we maybe, maybe will get to go home in January if she stays stable. She had a few hiccups but in February we finally got the keys to our new home, and we started straight on rivers room, making it the best home we could for her to come home too, waiting and wishing for the day we can bring her home! 4 months old and they was talking about sending her home because of how amazing she was doing!!
We had a few more hiccups and 2 more admissions to PICU for flu again and a chest infection, but in March she finally come of her oxygen all together. She only now had her feeding tube and dialysis tube.
We started our training, and watched to make sure we knew how to do all her medicines, and dialysis, and feeding tube had our home checks. We was finally getting there. And then comes April!!
WE FINALLY GOT TO GO HOME!!
We could finally do the leaving hospital walk with our baby! Only 7 months late but god she was worth the wait.
So yes, it was the worst and best time of my life, we have weekly appointments, and bloods taken monthly, and our workup to transplant. (Which has now been cancelled due to covid). But shes here after being told so many time she wouldn't be. River went through genetics, and testing to determined what cause her kidney failure. She was diagnosed with Cystic Kidney Dysplasia and Stage 5 Kidney Failure.
Her genetics came back okay, and there was no abnormalities, the same with mine and ryans. Unfortunately it was one of them things that happened to a beautiful little girl who didn't deserve it but takes it in her stride every day.
Shes the most sassiest child I have ever met. She has the biggest attitude, and is so damn gobby, and her tantrums are star worthy, but she is the most strongest little girl I've ever met, and even though we are only half way through our journey I know that she will never give up. Shes smart, caring, loving, beautiful, funny, all mixed into one. Shes an amazing big sister and we are so lucky to have her in our lifes. We must of done something right! So yeah, thats what started rivers journey, and how and why we got to were we are. Sorry its abit long, I left out a few bits due to the already length! 🥴
Any question please ask! Excuse the spelling and grammar mistakes as I cant be bothered to go through and check it 😂
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Ps. Ive also made a page if you wanted to follow on updates about her upcoming transplant!
