Jace's Story
Monday 22nd Sep
I began writing this story with hope & I finished it in heartache 💔😭..
2020- worst & best time of my life 💔💙
In March I found out I was pregnant and I couldn’t be happier. I got to about 9 weeks and started bleeding so I went for a scan the heartache and panic going through my mind was just crazy! I went and it was fine baby had a heart beat and all was well.
Then came my 12 week scan and again it went well, I had to attend this on my own again due to covid so it wasn’t the same but for me I don’t care at this point I was just so happy to find a little heart beat pumping away!!
Me being me and impatient couldn’t wait till my 20 week scan to find out what I was having so I went private! I found out on 16/06/2020 I was having a boy!! I was so excited I cried as everyone knows I really wanted a little boy and Mia wanted a brother and wouldn’t be happy if I came home with any other news!!
Next as you know comes the 20 week scan, this is where my world started to fall apart. I went in alone as always with covid and had a scan, I was in there for 2 hours while they were scanning and they sent me home and told me to come back in 10 days, these 10 days were awful as I had no idea what was wrong what was happening and what was going on..
I waited patiently and on the 3rd August 2020, went for another scan where they told me the baby was small and things didn’t look right (no other real explanation) so as you can imagine I was petrified not knowing what any of this meant and praying it was all going to be okay! They referred me to FMU (Fetal Medicine Unit) where I was due to receive more scans!
The next scan came and I went to see a consultant who measured the baby and checked his weight and bones and everything. This is when my world first fully started to come crushing down. Again alone for this scan so the information I was about to receive I had to take in on my own, in shock, not really understanding what was being said to me or what it even really meant! This was when they told me my baby was not growing properly and that he was too small, they first told me here he may have skeletal dysplasia to which I broke down thinking what how, when? Although this was not the worst the worst part was that my baby may be born still! I was offered an Amniocentesis test. Which I was told if I had there would be a slight chance of miscarriage.
The next day I went for a scan and as I lay there I was so was scared and heartbroken and didn’t know what to do should I have this test or not, as I lay there i prayed to god and asked him for a sign just even a little one to tell me what to do and as I asked this, the consultant said to me ‘The Amniocentesis you were offered is not going to be possible to do today because there is not enough fluid’. To which I knew was God answering me telling me no you don’t need to do this test.
I was told this time that In her opinion it’s more likely not skeletal dysplasia and more likely a placental growth insufficiency and this is when I was told my baby was a severe SGA (Small for Gestational Age) baby and had IUGR (Intrauterine growth restriction).
I was told at this scan again there is a chance that my baby may not survive and would be born still. I was told to rest and eat well which I did for the next few weeks so I went to stay with my mum.
The next scan came on 27 August where I returned and was told baby had only grown 100g in 3 weeks which is very low.
Baby now weighed 430g. I was referred for another scan in a weeks time but with the thinking if I’d even make it to that week, week 26! I prayed day by day to get each week further!
God had answered my prayers again! Week 26 came and I went for my scan, little did I think at this time I wouldn’t be leaving hospital. As you probably guessed the news I received wasn’t great, the news I got shocked me even more than the last and broke me that little bit more. I didn’t even think it was possible. I was told that something had reversed and they had to get this baby out now but the chance was very slim! They rushed around phoning hospitals after hospital to find a place to take me and baby together after a long and agonising day at 2.30am I finally arrived at St.peters hospital 2 hours away from my home. I was told that the baby wouldn’t make another day inside me.
I prayed and prayed that he would jus have some more time even a little. The hospital see me and scanned me and to my amazement the thing that had reversed had changed back again and was fine and they told me there are no signs for delivery right now and the more time baby had the better for him. A miracle or what!i thanked god so much!!
I was monitored with scans and CTGs everyday to check baby. Another week passed and I got to 27 weeks! Which was a week I prayed for a long time ago that if I was going to have this baby early lord, please let me get to this week! As even though he was tiny this week the chances were better!!
This day Tuesday 8th September 2020, was the day I was due to go home and become an out patient...
That afternoon they did a CTG just to confirm things so I could be discharged... All of a sudden the CTG started showing drops in heart rate, at first they thought of it’s okay it’s the machine and cas baby is small, then a doctor came fo see it and things escalated and started happening so quickly, I was rushed up to labour ward and was on another CTG. I remember having like 5 doctors around me and I was panicking so much because I was alone I had no one near me and everyone was so far away (2 hour drive).
A last came in and sat down next to me and said I need you to sign this consent form and she began to quickly go through the risk and outcomes and everything and told me I was going to have an emergency c section now and there was no time to wait for anyone.
I broke down in tears crying I was so scared, I had no idea what was going to happen. I just sat there praying to God please let it be okay please let my baby be okay. I didn’t even care what happened to me as long as my baby was safe!
I was taking into theatre where there was what felt like 100s of people. Probably only like 20 tbh. All asking me if I was okay comforting me and a NICU team in the corner ready for when baby was born.
I had the spinal block and began to eventually go numb, the whole time my brain doing flips and just praying to god with everything I had in me! The c section started and it felt so odd like a washing machine. My tummy being pulled around it was an experience that’s for sure!!!
Then I heard it really tiniest of tiniest cry’s (more like a kitten screech!) For the first time I heard him! My baby boy was here!! They put some tubes in him and brought him over to my chest to see me quickly. I remember them saying he is breathing on his own! I was amazed god really is a miracle worker!! He was so tiny, his body the size of my whole hand. Then they took him off to NICU to settle him to do what they needed to do!! I was so happy and I felt a rush of relief. I thanked god over and over again. Praying he was also going to be okay.
Tuesday 8th September 2020 and 4.45pm. My baby boy was born weighing 456g (1pound). He was so tiny but so perfect. Gods Miracle 💙💙💙💙🙏🏼
That night I went to see him in NICU, was crazy seeing my baby in that tiny box with all those wires on him, scary in fact! I remember I got to open his doors and touch him, his tiny little hand was the whole size of my finger tip! I remember being petrified to touch him incase I broke him but I spent so long just starting at him taking photos/ videos talking to him praying with him and just loving him. Love at first sight. I stayed with him all night until like just after midnight.
Wednesday I went to see him, I couldn’t wait to get up. I didn’t care I just had a c section and was still in so much pain, I jumped up out of bed at like 6am and was calling the midwife to come and take my catheter bag out so I could go and see him. They did and I went upstairs to see him. I think the adrenaline was raining through my body because the pain was non existent and all I could think of was excitement to see my baby!!
I got to see him and he was just so perfect!
I got to touch him again and feel him he was so beautiful I just couldn’t stop staring at him. It sucks because of COVID you can only get to see them once a day but you could spend the morning or afternoon with them so I was there all afternoon but wanted to be there all day just sat next to him!!
Thursday came and by now I had my routine of going to see him in the afternoon because I worked out I get longer time with him when I do that. This was the best day yet!! I got to have my first cuddle. SKIN TO SKIN!! it was amazing and even though I knew I was his mummy, I felt it so much at this moment. I felt like I was his mum!! That’s my baby boy I made him!! I was overwhelmed with joy! He was so perfect and so tiny and I just felt urges and urges of love for him!! 💙🙏🏼 I was so great full to God!! He also opened his eyes today so I see his beautiful little face so perfectly formed so tiny but so perfect!! I cuddled him for ages 💙...
Friday was another magical day! I couldn’t believe it I got to have another cuddle SKIN TO SKIN again!! It felt so amazing. Being told I was able to cuddle and touch him just meant the world to me, every second of everyday I just fall more and more in love with him 💙🙏🏼🥰
Saturday things were getting better. Today I got to cuddle him again!!! 🙏🏼💙. I also got to do some of his self care!! I got to change his nappy!! Never in my life have I been so excited to change a nappy!! I work with children and have a 7 year old so nappy’s normally we’re just a thing of no importance and ok Yh il do it but I never been so excited and nervous in my life to do it. It was amazing I was so excited to clean him and I got to feed him today for the first time too!! Through his tubes obviously, but I got to syringe my milk through his tubes so I could feed him. I felt like more and more each day I was his mummy and I can’t tell you how amazing it feels. Everyday, every morning, evening throughout the day I pray to god for thankfulness, thanking him for everything he is doing for my baby and me and praying he continues to do well and be okay.
He is done so well so far and is doing amazing!!! He’s such a strong little boy!! Such a fighter too!! All the nurses are telling me how he has such a character and personality already for such a tiny little boy!!! I’m so proud of him and amazed at how great he his and how well he is doing with things. I know we have a journey ahead of us, but god is with us and I can’t wait everyday to see him 💙💙
Sunday today they told me I have to leave hospital tomorrow because they don’t have room to keep me. They told me I have to leave today but I said no I will go tomorrow! COVID, I hate you, this is heart breaking not being able to be near him having to be so far away from him. I know I only see him in the afternoon anyway but being in the hospital makes me feel close to him. Being downstairs in a room just feels like he is in the other room of a house. I think it’s disgusting that the hospital have offered no support or sympathy or any sort of plan or advice on where I go from here or what I do it’s like ok bye now. Ok so what happens to my baby. What’s the plan for him? I just feel so let down and so deserted. Maybe I’m jus being hormonal, maybe the hormones haven’t settled yet I mean it’s only been 5days!
Sunday weigh day! Baby boy gets weighed today! I’m very nervous 😬 although they expect him to loose weight as every baby should loose weight at first and then start to gain weight. So hopefully by Wednesday when he gets weighed again he will have gained some weight!!
I can’t wait to see him later! I popped up to see him quickly earlier for a little sneak while I dropped him some milk off, he was having nap time but he looked so peaceful and beautiful 🙏🏼💙 Baby boy lost some weight but they said it’s okay so now he weighs only 409g not even a pound that’s just crazy!! But on a positive they have up his feed and he is tolerating it well so hopefully will have some weight gain 🤞🤞. Got to have a cuddle today, my favourite part of the day now. I sit around just waiting anxiously for 3pm when I can see my baby! It hurts so much that I have a time to visit him I just want to be around him all the time every second of everyday.
I also got to change his nappy which is another positive, it’s so scary but so rewarding!! I also learnt how to do the whole milk process of testing it and feeding him trough his little tube! 💉
Monday can’t believe he is 6 days old today! I’m feeling bitter-sweet today, today is the day I’m going home I’m so excited to see my baby girl (7) can’t wait to spend some time with her but at the same time I feel so scared/anxious and heartbroken to be leaving hospital. I always thought I would be leaving hospital with my baby boy in his car seat not a bag! Feels awful and it hurts that extra bit more knowing I’m so far away! 2 hours by car it jus feels like it’s another world away and it hurts so much!! I’m gonna miss him like crazy and I’m gonna be a mess!! I’m not leaving till 9pm but from the minute I leave at 9pm till 3pm tomorrow, my heart will ache I will be restless constantly checking my phone, calling to see if he’s okay!!
Baby boy is so beautiful I swear every time I see him I fall in love more and more 😍🥰... my heart can’t contain all this love ❤️
Never did I think this day would turn into one of the most heart breaking days to come.... I went to see my baby and I looked at him and I just knew he wasn’t okay after a few hours they did an X-ray and realised he had a perforated bowel and needed surgery immediately and would need to be transferred to a hospital that could do it. My heart broke and I was crushed how can a baby that small now weighing 409g have a big surgery. From this moment on I didn’t sleep or eat again!
We got to the hospital after hours of trying to stabilise him enough to make the journey there ( he had to have cpr at least once). We got there arriving at the hospital and things seemed to get worse, he completely deteriorated and they called me in telling me no I’m sorry he’s not gonna make it. He had been given cpr for 17 minutes. But my baby boy was strong and he thought on through it!! He began to stabilise a bit but they said he’s still very critical and wouldn’t make surgery.
The next day he managed to stabilise to the point now the offered me the surgery saying he’s well enough in himself to have it. But they took me to the quiet room and told me we will give him the surgery because it’s this or nothing and we have to do everything, but they said based on how ill he is and how ill he got so quickly his bowel would be pretty much unrepairable and they would probably be opening him up to close him again and let us say goodbye! My heart sank but I stayed strong for him, they told us to spend time with him and take lots of photos. Then off he went for surgery and they said it would be 30 mins an hour tops. It had been almost two hours by now I was so anxious and fearing the worst, then suddenly a knock in the door the surgeon and consultant tell us they had better news than they could imagine, he had more than enough bowel and it was a success and he has two stomas.
A few days passed and he was still very poorly but he was recovering from surgery and managing so well I was so proud and I couldn’t believe it!!
Then things got worse, he now started to deteriorate again and after some X-rays they found he had pneumothorax in his lungs and this was causing it they said they needed to put a drain in his chest to drain out the air. They did this a day passed and it didn’t seem to fix it and he was getting worse and deteriorated again so another surgeon comes in and tells me he needs to do another one but where he is so tiny and it’s so close to his heart it could be fatal, to my amazement it was successful and he was okay, he began to get a little better. Then he got worse and they did an X-ray and see his lung had completely collapsed.
Then he started to get a bit better and On Tuesday he had an X-ray and most of the air had gone and his lung was back up again! 🙌🏼🙌🏼🙌🏼. We was waiting to see if the hole would eventually close.
He was doing well having a good day and then suddenly 5pm hit and he started to deteriorate and things weren’t looking good again so they did an X-ray and it was back, his lung had collapsed again. 💔😭... they said well wait and see for the hole to close they aspirated it’s a bit and got lots of air out.
That night he seemed to be stabilised and doing well until 5.00am, he was having cares and he didn’t like something and he started to deteriorate and from this moment on things got worse and worse, there was nothing left to do. They watched him and his sats began up again and then down and then up and was like this continuously until about 7am, when his oxygen level went up to 100% and he started to crash, needing CPR, I sat there as they gave him CPR as they pushed there two fingers up and down on his tiny little chest, part of me felt calm as I see this twice before and he was fine.
Then the doctor comes over and bends down next to me and says ‘I’m sorry things don’t look good this time, I’m so so sorry’ as she hugged me! And this was it I just broke down and cried so much more as I watched him lay there struggling to breath and then all around him putting adrenaline into him and tubes down to his heart the lot!! Then i watched him take his last breath and the doctor come over to me and said ‘I’m so so sorry, he had a good fight and it all just got to much for him in the end’! I screamed and cried and broke. My heart was broken and unfixable I couldn’t cope they brought him over to me to cuddle him and I held him tight in my arms and i was just holding him and was so sorry, I felt I’d let him down and I couldn’t believe god had let him go I was so’s angry after everything he had been through why put him through it to take him. I’m still so angry and hurt!
I took him to my room and lay with him cuddled in my arms, I just wanted to be alone with him! Then a few hours later a nurse came in and she let me bath him and dress him, he was so cold to touch and so lifeless it was like looking at a completely different child! He was bleeding and it felt like every time I wiped it he wouldn’t stop!
Then came the moment I had to say my final goodbye and let him go, I had to let them take him to the mortuary 💔😭😭💔, I screamed as he went where is my baby, how can he be gone just like that. I don’t understand one minute he’s getting better and then he died. Why my baby boy? He was so perfect 😭❤️❤️
Then I had to come home alone, leaving the hospital with nothing but a memory box full of photos, his hand and foot prints and his blankets and hospital bits, I was broken I never imagined I would be leaving with a box instead of my baby!! But this box was the most cherished memory. A place where I've kept every scan photo. Every printer photo. Every cloth. Every lead. Everything that my baby boy had in that hospital. Even his prints. And I open this box all the time and add to it.
Sands charity was a big help to me at this point in my life. Not just for the memory box but for the support and help I got from those kind people on the phone. All the worries and questions of what to do next just eased because of them..
So I'm sharing my story of Jace today to break the silence and to raise money for all those other parents who will sadly face the same reality I did. That they can have the support and encouragement that I also received.
The smallest donations will make the biggest difference. Thankyou in advance.
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Dear Eloise, I never imagined behind your smile you are hiding such pain. I have no words to express. My prayers for you and your family. Baby Jace is in better place in Heaven. Sending hugs.