Jack was an amazing little boy, I need to share that with you, so you can really understand. This is our story.
It all started with a test, such a simple thing. Sitting in a toilet cubicle at 8am, an hour before I was supposed to arrive at work and knowing that a little blue cross was going to appear. It didn’t prepare me for actually seeing it though. I felt shocked, amazed, excited and then scared to death.
It’s real, I’m going to be a mummy.
After trying for just 3 months to conceive, I was pregnant. This was happening. We are going to be parents. What followed next was doctors appointments, consultant meetings, meeting the midwife and a lot of….oh my god…we’re going to have a baby…moments.
A few weeks into my pregnancy, at around 4 weeks I started feeling more sick than what I expected. This quickly accelerated into being sick constantly and a hospital admission for fluids and anti sickness medication. I had Hyperemesis Gravidarum (HG for short) and was signed off work for 4 weeks and told to rest.
Due to my sickness I had an early scan at 8 weeks, which is when we got to see our beautiful little baby for the first time. Our tiny little peanut was there in black and white.
I love you already
It took 2 more admissions and 3 trials of various anti sickness medications until, with the help of Ondansetron tablets, the sickness improved. We reached our 12 week scan and as before our tiny peanut was doing perfectly.
Wow, it looks like a real baby
Being able to get back to work was a great for me. I love my job and work with some of my closest friends. It was much easier now everyone knew I was pregnant too. I loved to show off my scan pictures and my ever-expanding bump.
At our 16 week scan we found out the sex…it was a boy! We were both shocked as we were convinced that our little one was a girl. But it felt instantly perfect, Mark was beside himself with all the boy things they would do together.
Hello little man
At the scan we were told about a lady who would be able to do a 4D scan for us. Feeling very excited we booked one for Monday 11th December, which was only just under 5 weeks away. We couldn’t wait to have a sneak peek at our little one.
It was coming up to Christmas and life was hectic with parties, buying presents, more appointments and blood tests. I was having lots of back and hip pains which slowed me down a lot. Baby was kicking lots which was amazing, Mark and I would talk to our peanut all the time, everything felt perfect.
On Sunday 10th December our lives started changing in a way we couldn’t have known. I woke up as normal, with some back ache and feeling slightly nauseous but nothing out of the ordinary. As the day progressed my back pain got more and more like period pain. I also was going to the toilet a lot which was odd, as i has had bad constipation due to the anti-sickness medication. By 4pm I knew something wasn’t right, so we called Dorchester maternity ward and were advised to go in. I was a little worried but I still thought it was my back and nothing to be concerned about.
We arrived at the hospital and were taken into a ward and I was put into a bed, they did the usual blood pressure tests, blood test and temperature. My pains were getting more intense but nothing too bad at this point. None of the nurses or the consultant midwife were too concerned. I was given some codeine and paracetamol and told i would be kept in over night.
I didn’t sleep at all that night, the pain would come in waves. The intensity going through my lower back in a sharp sweep then it would ebb away. At one point I had a little bit of blood when i went to the toilet but it was old so again nothing to worry about.
I was getting very worried.
The pain got so intense that I burst into tears, I was sure I was losing my baby. I went out to the reception desk and said something wasn’t right and I was in too much pain. They gave me more codeine and I went back to bed. A little while later a nurse came over and saw that I was pretty distressed. She called the consultant midwife to come and see me. I had to wait a while as she was busy with another lady in labour.
When she arrived at 5am it was a different lady to last time. She saw me have the pains and very quickly realised that I was having contractions. She immediately gave me some red tablets that can help to stop labour, and arranged for me to have one of 2 steroid injections that I would need to have to protect the babies lungs should he arrive early. She also went to call Southampton Princess Anne Hospital as I was to be transferred there as soon as possible. Dorchester only can look after babies from 34 weeks, Poole from 29 weeks, Southampton from 21 weeks…i was only just 26 weeks.
Please stay in little man
At 10am I was blue lighted in an ambulance from Dorchester to Southampton. With me was a lovely midwife from Dorchester and 3 paramedics. All of them were fantastic at keeping me sane during the journey with the contractions slowly getting more intense. I refused gas and air as I knew the pain would get worse and I wanted to stay alert to everything that was going on, plus save the relief for when I really needed it.
We arrived at Southampton Princess Anne Hospital before 12pm. I was whisked into a delivery room and put on a bed, shortly after my mum and Mark arrived. I had more tests and was given more red tablets to stop the labour. At this point we were still being told that it was most likely that my labour would stop and I would go home.
As the day progressed it became clear that, that was not going to happen. My contractions were getting more regular and more intense. At 3pm one of the the NICU consultants called Mark came to speak to us. He went through the risks, including our babies chances of survival and what would happen once he was born. Our boy had a 80% chance of surviving the first 12 hours. Once born he would immediately be taken away to a table in the room and intubated. I wouldn’t be able to hold or see him. He likely wouldn’t cry. He would be placed into a small carrier bag, wrapped up and put in an incubator to keep him warm. They would cut the cord, not his dad. Then he would be taken away to NICU just around the corner so they could get him stable.
This wasn’t the amazing birth I imagined. I wasn’t prepared. I hadn’t had one antenatal class. I didn’t have a birth plan. I wouldn’t get to hold my baby. Will he cry? Would be be healthy? Would he even make it.
At 10pm I was given my second steroid injection and put on a magnesium drip to help protect our babies brain. The drip made me very sick and burnt as it went up my arm. Despite that I was so relieved to have both medications that would help my baby make it.
The lights were turned low in the delivery room….4cm dilated…the midwife says that I may only need to get to 7cm as our baby is so small. My contractions were so intense that each one took my breath away. I was by this point sucking on the gas and air like it was an anchor stopping me from getting swept out to sea. It kept me focused and sane. I closed my eyes and took myself somewhere else. Talking to myself as the contractions reached maddening intensity.
….this is the worst its going to get, you can do this….count the contractions like waves…….one, two, three….keep breathing….don’t lose it…..you can do this….breathe…
At one point for a brief moment I did lose it. Opening my eyes and bursting into tears at Mark and my mum. Both powerless to help me, but perfectly able to calm me, to help me regain my control. I shut my eyes again, going into myself to keep me sane. Mark rubbing my feet or just holding my hand the whole time.
I need to push
My eyes shot open. The midwife, who had been there throughout giving me guidance and some tough words when I protested that I couldn’t cope, shot into action. She checked….fully dilated. She buzzed NICU and after a few minutes the room was full of people and machines. “Push when you need to,” she said. I didn’t need to be told twice, by this point I wanted him out. I was petrified his heart would stop. I started to push and after 20 minutes his sac, waters still intact, was bulging. The midwife popped them and waters coated the room, shocking everyone. “You better catch him,” Mark said in a scared voice. I started pushing again and was told to stop and give small pushes instead. With one more push my little baby boy came flying into the room. He span out like a rugby ball, I saw one little arm fly up and the after second he let out a cry! The most amazing noise I have ever heard.
He’s alive, I did it
It was 3.56am and our little Jack was born weighing just 2lb 3oz. He was immediately scooped up and taken to an incubator table. 5 people surrounded him doing various things in such perfect coordination that it was dizzying.
Mark got a second to take the above picture before he was whisked out. This was all I saw….
We were all left in a suddenly quiet and empty room, now with just the midwife, I was shell-shocked. We had to deliver the placenta now, that scared me for some reason, but it was harmless and done in minutes. Like my baby that was scooped up and taken away, they needed to do tests on it to try and pinpoint why our baby came early.
After I was checked I wanted to get cleaned up. It had been a long haul and i needed to feel a little human. My mum took me to the small ensuite bathroom and helped me wash. I was a strange feeling. I felt like a child being cared for, which i was, but it was deeper. I had a strange shocked feeling that I couldn’t shake.
Whilst we were in there the midwife and nurse changed the bed and removed the machines and equipment that we no longer needed. What followed was more drips and blood tests and me wondering if i would stop feeling so numb.
I don’t feel anything, shouldn’t I feel something?
At roughly 11am a porter arrived to take me to NICU to see our baby. I felt so nervous. What if I don’t love him?…..what if i feel nothing?….how will he look?….is he OK?…..My heart was pounding as they wheeled me through the double doors of NICU and around the corner and to nursery 3. Our little boy was in the far right corner, his incubator covered in blankets. The red window screen was pulled down to protect him from light that he’s never experienced before. I was wheeled around and I lifted the blanket up.
It was like an explosion.
I felt a huge heart stopping tidal wave of love. It hit me with an intensity that floored me. Here was my baby, my little Jack, he’s perfect. I have never known love until that moment. Not like that. To love something so much and know you would do absolutely anything to keep your baby safe.
He was tiny and completely gorgeous. I was overwhelmed. He was perfect. The midwife told me that I could touch him if I wanted to. I just had to wash and sanitise my hands first – something we would get very used to doing – Mark and I quickly did both and rushed back to him. We carefully stood either side and I opened the hatch door and popped my hand in. Mark captured the moment that I got to touch my boy for the first time, Jacks little hand grasping mine.
I look as shell-shocked as i felt
After seeing him and spending time together in NICU my mum left. Mark and I were taken up to the 3rd floor where I would be kept in for a few days to rest and be monitored. It was so hard leaving Jack, but I was also exhausted. Mark couldn’t stay with me on the ward which was upsetting for me, i was so scared and full of emotions. I didn’t want Mark to be on his own or sleeping in the car. Luckily at Southampton there is a Ronald McDonald House. This is a free hotel for parents who live far away from the hospital whose children are staying there. It’s funded by McDonald’s and is an absolute blessing, we would not have managed without it. We are so very grateful to this place for providing us a huge stress relieve and a comfortable and welcoming environment. Next time you go to McDonald’s please put your change into the charity boxes there, its such an amazing cause.
Our NICU diary
Throughout our time in NICU Mark and I kept a daily diary with a picture and record of what happened that day and how he was. I haven’t edited this, it’s as it was when we wrote it each day.
I have included brief explanation of some of the terms used below this.
Day 1 – 12th December 2017
Jack Bruce Mark Tigwell was born at 3.56am naturally. Moved from ventilator onto pressure mask @ 7.30pm breathing by himself oxygen levels doing well @ 10–15pm. Had a wee during morning. Visit from granddad Bruce and nanny Mo.
Day 2 – 13th December 2017
Removed face mask and switched to breathing tubes up his nose as breathing on his own. Started giving donor milk plus 2mg of milk from Allana for mouth care. He had a poo today too. Visit from granddad John and nanny Kim. Mummy discharged from hospital and joined daddy in Ronald McDonald House.
Day 3 – 14th December 2017
Under UV light to help with jaundice. Had more donor milk. Mum brought 6mg of milk and was able to feed him using a cotton bud. Tried inserting new feeding line but unsuccessful, retried during night and was successful. Small infection around umbilical. Back onto pressure mask during night to help him breathe as getting tired breathing for himself.
Day 4 – 15th December 2017
Jaundice levels have dropped enough for the UV light to be removed. Still on pressure mask following rough night. Had X-ray to check new feeding line. Consultant checked him over @ 10.30 seems to be responding well and his umbilical less red and inflamed, tummy soft again. Possibly infection antibiotics to follow. Still having small apnea’s but drs not too concerned may need to go back onto the ventilator. Happier on cpap pressure mask after lunch. Had his skin scanned in pm. Had brain ultrasound during granddad Bruce and nanny’s visit. Mummy changed jacks nappy for the first time and started on the breast pump.
Day 5 – 16th December 2017
Arrived at 9.15 to see him. He had an episode when we arrived but brought himself out of it fine. He had been having more overnight but that’s normal for a baby his size. They are monitoring him closely to see how many apnea’s he has as they may need to adjust his oxygen levels through the mask. He’s on the lowest levels at the moment and gets himself out of it which is brilliant. Still lots of actions before even considering going back on the ventilator. They changed the main line from his hand to his foot as the vessel wasn’t holding. Very normal in a baby so small. Got even more milk from mummy today so he’s no longer getting donor milk. Mummy helped change his mask and nappy again today.
Day 6 – 17th December 2017
Had a good night with only a few apnea’s. Oxygen has been turned down to 22 from 25. He has had a few more since we arrived this morning so they may have to turn his oxygen back up again. Insulin levels are up and down but mostly going down which is good. Daddy has changed his nappy, wiped his mouth and helped with his checks today. At lunch he had an echo heart scan which was normal. The duct is open but that should hopefully shut on it’s own. Just needs time. This afternoon he has had more bradys as his mouth keeps coming open. Nanny Kim and granddad John visited. He had quite a few Brady’s, but he’s bringing himself out of them. It’s hard on mummy and daddy. This evening he had a new lady who adjusted his oxygen, chin strap and also gave him suction for his gunky mouth. Feeling much more positive and happy that he is in safe hands. Day ended well.
Day 7 – 18th December 2017
27 weeks today. Had a good night, was auctioned to remove gunk and air from his belly. On higher oxygen. Only had a few apnea’s overnight. This morning he has been having more of them and seems tired. To help him they are upping oxygen levels and will consider other actions if absolutely necessary. Best to not ventilate until really have to. Currently nil by mouth but milk is very likely to restart this morning.
1pm: Consultant just popped over and said he’s doing just fine. That he’s happy he doesn’t need the ventilator and he doesn’t think he’s getting tired it’s just his duct being open that’s causing brady’s. He’s going to split his caffeine dose so he has some twice a day to perk him up a bit. But he’s not worried at all and said jacks doing great. If he does start having more again despite caffeine he will change his oxygen levels. Ventilation is an option if he needs it, which he really doesn’t right now as he is doing just as expected and better considering how small he is. He’s restarted his food too. This afternoon he’s been great. Few Brady’s but doing very well. Daddy changed his nappy and he’s in bigger sizes now. First big poo as well which is great news. When visiting in the evening he opened his eyes. He looked right at us and made a little noise. Was wonderful. Can’t wait for them to be fully open!
Day 8 – 19th December 2017
He struggled overnight and kept holding his breath so he is back on the ventilator to give him a rest. He looks very relaxed now, he’s on some morphine as the tube can be a bit uncomfortable. They are still feeding him 1ml every 2 hours. He starts his increased caffeine twice a day today.Spoke to the consultant and they are going to do another echo to check how the duct and blood flow are. If he thinks all OK then it’s a case of waiting for Jack to start breathing against the ventilator so he can be taken off. If not there are many actions they can take to help shut the duct. Spoke to the counselor to help mummy and daddy. Feeling much better. Nanny and granddad Tigwell came to visit today.
Day 9 – 20th December 2017
Still on the ventilator at the moment. He has done some breaths himself though. If he keeps that up he can be taken off again. Having some problems peeing so possibly may have a catheter put in if he doesn’t go. They have increased his food and fluids again do he should start going again. They need to replace his cannulae and give him a blood transfusion. He needs the blood as they keep doing lots of tests and they tend to struggle making it themselves. Overall he is very settled. Hopefully he won’t be on the ventilator too long.
Day 10 – 21st December 2017
Still on ventilator at the moment but they are reducing his milk and stopping the morphine to wake him up. Whilst he’s more awake they will try removing his ventilator. If he manages OK then he will stay off. The duct is moderate so not serious or harming him in any way. If that changes they will consider surgery to shut it. The apnea’s are linked to the duct being open but also a part of being so early. It’s likely that he will start have some again once off the ventilator.
Day 11 – 22nd December 2017
Still on ventilator with reduced support so he is breathing more himself. All results as they should be. When suctioned this morning he had some blood in the tube so they are putting him on ibuprofen to try to shut the duct. This means that he is also back on morphine as he will have to remain for the 3 day course of ibuprofen. If that shuts the duct and he doesn’t get any infections then he won’t need any surgery. Turning down the humidity so by Boxing Day he will be on 40%. That means that once he’s off the ventilator we will be able to have cuddles.
Day 12 – 23rd December 2017
Had a few Brady’s overnight and his secretions are a bit thicker. Likely that he has an infection so they are giving him a blood test and then antibiotics. He’s still on morphine and they increased the dose and gave another painkiller last night, so he is much more settled this morning. Still on ibuprofen to try to shut the duct. Has 2 more days of that. Hoping that the duct closes with that so he can get more settled. Consultant is still happy with him and his progress. His humidity it at 55% now. Got to be 40% to come out for cuddles.
Day 13 – 24th December 2017
Replaced jacks ventilator tube overnight which just fell out due to him pulling at it. Having a blood transfusion. Gases and test results all good so if he carries on how he is he’ll come off the ventilator over the next 24-48 hours. Humidity now at 50% so possibility of Boxing Day cuddles with mummy! 7pm Had the carol service in the hallway which was lovely. Family who were in our cot last year left us a lovely card and gift. Also got gifts from a family and the hotel. He’s having more bradys again so it’s likely he will be back in the ventilator which is normal for them.
Day 14 – 25th December 2017
Went back on the ventilator last night and doing very well. He’s still on the same medication as yesterday morning. Now off the ibuprofen as he’s had all of his doses now. Going to do a scan of his heart to see what the duct is doing. Has a really cute Santa hat on and has gotten lots of presents.
Day 15 – 26th December 2017
Was really settled overnight. Still very settled today. They have reduced his ventilation down and increased his food to 2.5ml. He also is on some more painkiller to settle him down more. His duct is still slightly open but not causing any concerns. He had a new mainline IV again today too. He is off the incubator humidity now. Plan is to leave him to rest more.
Day 16 – 27th December 2017
All the same as yesterday with the exception of his morphine, which is less and he’s now getting potassium as it was low. Blood gases are normal which is great. Doctors think the duct is smaller so maybe closing by itself. Quite agitated today as morphine was reduced, oxygen was kept high. Food increased by 1ml every 24 hours.
Day 17 – 28th December 2017
Morphine was increased back to previous level and he is much more settled today. Doctor says he needs to stay on that until we have a plan to take him off the ventilator. He also decreased his oxygen from 60%, currently on 46%. Wants to get him to 30% by the end of the day. Much better! He is doing so well so far today. Off the antibiotics too. Going by his test results on how he’s doing rather than the machines alone.
Day 18 – 29th December 2017
He’s doing ok today. They want to try taking him off the ventilator so his morphine is paused. They’ve tried disconnecting the tube and he didn’t do many breaths himself. They think stopping the morphine will allow him to breathe better. Waiting for that to see how he copes. May try taking him off tomorrow. Aiming for cuddles by mummies birthday on Sunday. He’s gained more weight! Now 1.074kg!
Day 19 – 30th December 2017
Off the IV morphine and insulin now, may restart though. They want to disconnect the ventilator to change it to a bigger tube. This should help to reduce the leak so he get more ventilation. Whilst doing that they will also trial him on the cpap bubble to see if he copes with that. If he does they will keep him in it, otherwise he will get the larger tube.
Day 20 – 31st December 2017
Stable overnight, much the same as yesterday. Food was paused at 5.5ml to prepare for him having his tube replaced. Daddy fed him and mummy changed his nappy twice. It was mummies birthday so they did a footprint and hand print card. Was lovely! Extubated him this afternoon to change the tube and tried him on bubble pap. He didn’t manage on that but they tried him on bi-pap. So for now he is off the ventilator. He’s doing ok, had a couple bradys but only needed help with 1 so far. Either way he’s having a rest from the ventilator which is great news. Fingers crossed that he stays off!
Day 21 – 01st January 2018
Jack passed away today. They tried taking him off last night and he was on bipap doing well when we left. At 5am they put him back on the ventilator as they noticed his right lung had started to collapse. He settled down and he was ok at 9am. One hour later the doctors were assessing him and his tube moved. They took it out and he clamped his vocal cords and chest shut. They couldn’t get another tube in so he stopped breathing and his heart almost stopped. They thank fully managed to get another tube in. We were called into say goodbye in case he was going then.
He was fairly settled once we saw him but back on a smaller tube so has the leak again. His right lung was still collapsed so they were trying different ventilation. He had to have a blood transfusion to try and help him re-inflate it. Was on morphine to stop him fighting the ventilator. We spent all day with him and they gave him lots of different drugs. He had more pain relief and a muscle relaxer to stop him resisting.
Late in the afternoon they tried a different ventilation setting to wobble him and see if his lung would inflate again. After a long time we were spoken to and he was doing worse. From the green room a nurse called the grandparents to tell them come.
We went and spent more time holding him and comforting him. His sats kept going down or not changing. They asked another consultant and heart specialist to come in and help.
They asked if I would like to hold him. I got my first cuddle with him on the chair whilst he had blood, antibiotics, fluids and many other IVs. He did improve slightly but it didn’t last. The grandparents arrived during this. I swapped so Mark could have a cuddle and the grandparents left the room so we could have some time with him. It was then that the consultant told us he had been without enough oxygen for too long. We asked if we were being cruel and what his chances were. She was honest with us that it wasn’t yet cruel but they would tell us if that changed. They said after so many hours that the chances of severe brain damage was very high. We had to decide what to do. We didn’t want him suffering anymore, he wasn’t fighting anymore, he was telling us it was his time. Mark carried him connected to just morphine and with the nurse pumping the airbag to the family room. We sat on the bed, said our goodbyes to our boy and she disconnected the airbag. He went quickly in Marks arms. As he died I said “sorry mum”, I’m sure it was him saying sorry for leaving.
We sat holding him and loving him for a time and the nurse and consultant made sure he was gone. Mark picked out some clothes for him to wear. We gave him a bath and removed his wires and tubes. He was our baby without the tubes, our little Jack. We dressed him and put his hat on, we wrapped him tightly in his blanket and held him. The grandparents came back him and they held him and cried. Mark and I decided to stay the night with him in the family room. Our parents went to stay at Ronald McDonald House. We led with him in the bed and held his body.
We laid like this for a long time. We read him a bedtime story from the box from 4Louis. In it was 2 teddies, one which was for Jack (he still has it now) and one for us (I have it in his blanket and I kiss it all the time). I tucked him in for the first and last time and then we put him in his cooled cot. We led down to sleep, the room was as cold as ice, or was it just me that felt cold to the core? I thought I would never sleep but we did. We fell to the darkness of exhaustion.
Day 22: Day 1 without Jack.
Waking up in the cold room and for a second not remembering was the last time I wouldn’t remember. It was like the sea pulling out before the tsunami hits.
Memory hit me like a sledgehammer. My baby is dead. My baby is gone. He’s led in his cold cot. Small, perfect but icy. Tears pouring down my face and the despair rising I pick up my baby.
As beautiful as he is I know he’s gone. Anyone that has seen death in a loved one knows this. They lose what makes them them, their essence, the soul? I still need to hold him, staring at his beautiful yet bruised lips from the breathing tubes. I feel heartbroken that I couldn’t save you. I feel guilt that I brought you into the world only to suffer. I wish and wish for your little chest to rise and fall. I pray to a god I don’t believe in to turn back time, for this to be a nightmare. But this is real, it’s as real as it gets.
Mark and I are numb. Then we are exposed. Our skin has been peeled back to expose such painfully raw hurt that it’s painful. I swear if someone hit me I wouldn’t have felt it.
The nurses came in and tried to get us to eat. They asked if we wanted photos, foot moulds and prints. We said yes.
Mark and I taking turns to hold Jack. Holding each other. Trying desperately to cling to something, anything. Begging for it to all be a lie.
A wonderful lady from Remember My Baby came, she was a nurse on NICU who had cared for Jack. She took beautiful pictures of us and Jack. Some I have never shown as I would hate for people to look at my baby with fear or worse disgust. That thought breaks me and immediately fills me with rage.
The wonderful Lisa came and helped us do his footprints and moulds. Mark and I taking turns to press his tiny, yet perfect, feet into the clay and ink.
We stayed and had forms to sign. I still had lots of my milk stored there. I decided to donate it to other babies whose mums couldn’t express or make enough. This meant a blood test to ensure I didn’t have anything.
Our parents returned from Ronald McDonald House and we asked them to get the staff something to thank them.
Our time here is almost over.
We said our goodbyes and asked our parents to go home so we could pack up and leave at our own pace. They were worried but agreed to go.
Leaving that family ward was the hardest thing we have ever done. I felt like when that door was shut I was closing the door on Jack. I still didn’t quite believe it. I wanted to go to his ward and look at him through the sides of his incubator. I wanted to feel his warm hand in mine.
They said we could come back if we wanted to see him again. We knew he wasn’t there anymore. We didn’t want to force him back, to cling to his body. What was our baby was gone, I started worrying that he might come back and get stuck if I forced it. It’s a weird thought. Grief and shock makes you feel differently, it’s like being between things as you don’t feel like you’re living.
We stood up off the edge of the bed. We went over to him. We both kissed and held him. I spoke to him and told him I loved him and always would. Mark told him to sleep well and how proud he was.
We came out the room and saw all the purple butterflies. This time for Jack. I pulled one off of the wall and kept it. I’m not sure why. I wanted one. This was my baby.
They led us to the double doors. We hugged the nurses tightly and then turned. The doors opened and then sealed shut. I took 2 steps and just broke. A tidal wave of emotion just overtook me. It poured from me. Mark held me. We got to the car. We drove to Ronald McDonald and packed up our room. Carrying the loads down took an age. Both of us rushing. We wanted to run. We wanted to just escape from everything.
We took our key back to the reception and thanked them.
Turning to the lift we bumped into a dad from NICU. He cheerfully asked if we were going home. Then he saw our faces, our shocked pale faces, tired and grey under-eyes, eyes red and puffy.
“Oh….” and the first of many shocked, sad, awkward, embarrassed looks. I’ll never forget that look. It was the first time someone saw us as the parents whose baby was dead. It’s an awful thing.
We carried the last boxes to the car. There was an ambulance parked alongside the road and I remember carrying my white shoebox with all Jack’s things in and his purple butterfly on top and thinking, “it’s ok, they see life and death all the time, they understand”. It’s an odd thing to think. I felt safe to again just break.
Mark drove us home. He said he had to. It was the last thing he could do. Get his family home. Get us safely home. That car journey was awful. Us both crying softly or loudly. Talking in short spouts. Helping each other to get back. Just one more mile, another, another. Our house was dark and cold. Everything was grey.
Then our Dog Star ran out. It was like an anchor. We both clung to her and sobbed. Without her we wouldn’t have gotten through. Having something to look after and care for gave us both a purpose. A reason to go on.
We both unpacked and then just sad. Cried. Sobbed. Replayed his videos. Screamed. The twisting, cutting, searing pain an unbearable daily torment. Followed by a numbness. The great nothing. Anger. So furious you wanted the world to burn. Coldness so deep and dark I thought we would drown. It’s uncomfortable, painful.
Then slowly. Slowly. We started again. That’s when this blog was born.
We did normal parent things like reading to him, feeds, changing his nappy and loving him. We smiled and laughed when he was doing well and we cried and struggled when he had his down days. We made friends with the nurses and consultants and cracked jokes. They looked after us when we were struggling and told us to go home when we were falling asleep by his incubator. We met other parents, many of who have healthy babies now, and some of which are in the same position we are. We saw happy babies, sick babies, loss and hope. We experienced kindness and care that i will always be grateful for.
One of the senior midwives Carolyn was incredible, she was always on hand to explain things and to give us a stern talking to if we weren’t looking after ourselves. Lisa the family counselor there was a rock for us both the whole way through also. Both of these ladies were right by our sides when Jack passed. They held us both and cried with us for Jack. They guided us through the things we could do to feel close to him at the end. They are still looking after us and check in on us to make sure we are OK. We will always hold a special place for them in our hearts.
Thank you for reading this. I would be so grateful if you could Donate even a small amount to Jacks fund to raise money for Southampton NICU. As you can see from this, they did so much for us and him. They really cared for us all. We will be forever grateful to them.
Brief guide to premature babies and treatments Jack had.
- Umbilical catheters – There are two types of umbilical catheters. One is called an umbilical artery catheter, which is inserted into the baby’s artery. The other is called an umbilical venous catheter, which goes into the vein. Most catheters only have one tube through which fluid can be given. Some umbilical catheters have a second or third tube attached so that fluids and medications can be given through one entry point. This can allow your baby to have several procedures taking place without disturbing him or her or causing too much distress. Catheters are mostly used in the first days after birth. The line in the artery is mostly used for measuring blood pressure and sampling blood gases. The line in the vein is used for giving nutrition and medicines.
- Endotracheal tubes – Babies who are ventilated will have an endotracheal tube placed in the windpipe. This will ensure that air is able to reach your baby’s lungs. If the tube becomes dislodged due to movement from the baby or because the tape securing it becomes loose, it will quickly become obvious – alarms will sound and staff will reinsert the tube.
- Feeding tubes / NG tube – Very early babies often can’t feed normally, for a variety of reasons. Most babies will therefore be fed through special feeding tubes, especially during the first few weeks on the unit. These tubes enter through either the nose or the mouth and run directly to the stomach.
- Long line IV – If your baby is very premature or too unwell to take food or fluids through his or her mouth, then very fine tubes, known as long lines, may be fed into a vein to let staff give your baby the nutrition he or she needs to thrive. This is called total parenteral nutrition (TPN). The line can also be used for injecting medication, such as antibiotics, should this be needed.
- Intravenous (IV) drips – Most babies on a neonatal unit have fine tubes (called drips or cannulae) inserted into a tiny blood vessel, usually in a hand, foot, arm or leg. These are usually either to provide fluid or as a route for giving important medication, such as antibiotics. Very occasionally, these can break the delicate blood vessels or become blocked. If so, fluids can leak into the surrounding tissues causing swelling. On rare occasions this may damage the skin, leaving a scar.
- Bradys / apnea – Sometimes when babies have periodic breathing or apnoea their heart slows down. This is known as bradycardia. Usually it is very short-lived and gets better as soon as the apnoea resolves. The team will try to prevent bradycardia by preventing apnoea with respiratory support and by giving caffeine.
- Low blood pressure (hypotension) – Occasionally a premature baby or sick term baby’s blood pressure is too low. It is important that the baby’s blood pressure remains at the right level and does not fluctuate too much. If it drops too low, this could affect brain development, so the healthcare team may raise her blood pressure with extra fluids or drugs.
- Duct / Patent ductus arteriosus – Around the time of birth a blood vessel that is used to divert blood away from the lungs when the baby is in the womb (the ductus arteriosus) closes so that blood can be pumped to the lungs from the moment of birth. It is common for this closure to be delayed in premature babies. This is known as patent ductus arteriosus.In most cases, this delay does not cause a problem to the baby and the duct will often close by itself by term equivalent age. However, in a small number of cases it can cause problems.
- Blood gas – Measure the levels of blood gases (oxygen and carbon dioxide). If your baby is very sick, he may need blood tests several times an hour to monitor these levels. This type of blood test may be done on a blood sample taken from an artery because arteries carry oxygen to all parts of the body. The blood sample can be taken from an artery in the wrist or foot, or through the umbilical catheter if a baby has one in place.
- Continuous positive airway pressure (CPAP) – Short prongs or a mask are positioned by the nostril or nose, and air or oxygen is blown in at a constant pressure. Your baby does all of her own breathing, but the machine helps keep the lungs open in between breaths.
- Bilevel Positive Airway Pressure (BiPAP) – Same as CPAP in use but allows for 2 different pressures for inhalation and exhalation.
- Nasal prong oxygen – A pair of small prongs is used to deliver extra oxygen through the nostrils. This option is used when the baby does not need pressure to keep the lungs open, but needs a little extra oxygen to maintain sufficiently high oxygen levels in her bloodstream. A modified version of this is called Vapotherm, which allows higher levels of oxygen to be delivered through prongs, and works in a similar way to CPAP (above).
- Mechanical ventilation through an endotracheal tube (intubation) – A plastic tube is inserted through the nose or mouth into the windpipe and air or an air–oxygen mix is blown in and out of the lungs under pressure. The machine does most or all of the breathing for the baby.
- Echocardiogram – This is a specialized form of ultrasound examination used to study the heart. It can detect structural problems (heart defects) and problems with how the heart works.
Sources: Bliss, Tommys, NHS, Babycentre and GOSH.