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. Then we put him in his cooled cot and slept.
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.