First Time Mum ICP (Obstetric Cholestasis), Premature Birth and NICU stay
Sometimes, despite all the best birth prep in the world, pregnancy and birth can get complicated. We are so grateful to Elisa for sharing her real and candid experience of developing Obstetric Cholestasis during pregnancy, going into premature labour at 35 weeks and spending some time in NICU with their baby who experienced Jaundice and feeding difficulties.
Whilst this is far from anyone’s ‘Plan A’, it demonstrates really well that there are almost always still aspects of your experience that you can control.
Pregnancy
I have tracked my cycles for year, but even so, it took us 7 months to get pregnant (it's not really a long time but it did feel like it). I had been a feeling odd and my temps were flat which can be a sign, I brought some little baby boots when I did a food shop and a digital test. The first one didn’t work, so for the next one I got up really early before Mike (my husband) was awake and did the test and put it on the side with the boots, and when he woke up I made him get up and look he was half asleep and it took him some time to work it out but he was happy when he did. I was only about 4 weeks I was tired and has sore boobs but not feeling sick.
Unfortunately 11 days later I was at work and having a lot of cramping and pinching feelings and just before I started driving home I started bleeding and I just knew. I did have some hope when I called the doctor next day but I had 3 days of bleeding and did a first response test and it was negative. I was only about 6 weeks but it was still hard because 11 days it enough time to start imagining what life will be like, but I also felt glad it was early.
I wanted to wait at least a month but ended up leaving it two because January was my birthday and I would have found out on that day if I was pregnant again and I just didn’t want that. We get pregnant on the next cycle in February 2019. I found out the weekend my mum was up as I was really tired and a bit snappy with her as soon as she left, I took a test and got a very fast positive! I know some people tell their husbands in cute or funny ways but I could not wait all week (he was working away from home), so I just told him over video chat.
We only get two scans on NHS 12 weeks and 20 weeks. So I book a private scan for 9 weeks just. The scan was amazing, to see a little baby with tiny arms and legs wiggling around. We decided to do an NCT course which was great and I really enjoyed it. We also did an the online hypnobirthing Course by Birth-ed, I really enjoyed using her meditations and visualisations. I was hoping for a natural birth, to use the pool with minimal intervention.
Birth Story
My pregnancy had been going well other than the normal symptoms up until Saturday September 14th (33+1 weeks) where I started to feel itchy, especially over night and on my hand and feet.
On Monday the 16th I called the Day Assessment Unit and they advised I come into get checked for Obstetric Cholestasis (ICP), this Monday should have been my last one before leaving work on Maternity leave. I had to wait two hours for my bloods to come back and when they did it was clear I had ICP, as my Bile acid levels where 57µmol/L (normal range is 0-14µmol/L). They then asked me to do 20 minutes of monitoring to see how the baby was doing and as I needed to wait to see the Doctor anyway. Baby was all fine and moving well. I was prescribed medication, weekly blood test, another two ultrasound scans and induction between 37-38 weeks.
This was all rather a lot to take in, and I spent the next few days preparing for the baby to arrive sooner than expected and researching ICP and Induction. We had the next scan on Wednesday 18th and it was lovely to see the baby again, we did not know the gender at that point but during the scan (that I attended by myself) I was sure I had spotted that baby was a boy. All was well with the baby and was told to have bloods taken next Thursday at my Midwife appointment.
Thursday 26th my mum and sister where staying with us for a few days to help prep. My mum came with me to my midwife appointment (34+6weeks) my midwife did all the normal checks, took my bloods and said all was well. I asked if he was engaged as I have been getting so much pressure for days, she said no and that she didn't think baby was coming anytime soon.
Sunday 29th I woke up a 6:30am after an unusually good night sleep to period like back pain, was I got up to pee I felt a small gush of something, and I just remember thinking ‘please don’t be blood’, it was not! It was just watery fluid with some cervical mucus in it. I call the Labour ward to say I thought my waters had broken at 35+2 weeks they told us to have some breakfast and come on when we were ready with an overnight bag just in case, but not to rush in. I am supper organised and had most items packed. We only live 15 minutes from the Hospital so got there soon after 8am.
The midwife did an internal exam and a test to see if my waters had broken which they had, they said they would keep me 24 hours for observations just in case and see if I went into labour naturally, at this point I already felt like I know I was going into labour and was doing my best not to panic. I had done some meditation when we arrived and now put on our Bluetooth speaker and my playlist. They put the monitors on for 20 minutes and my husband Mike went home to get things we had forgotten and babies’ bags. I took some paracetamol about 11am.
Soon after Mike got back, I was given some antibiotics by tablet and soon after that I started to feel sick. One of the midwives recommended that I have a bath. The bath was great, I was in there for about 3 hours. I was sick at one point but knowing it was unlikely I would be allowed a pool birth with a preterm baby I was determined to make the most of it. When I got out, I remember having to lean on the floor on all 4 for a few minutes and Mike keep asking if I was ok, I had to ask him to stop. I sat on the ball and at about 15:00 someone asked to monitor the baby again. I said I could not sit on the bed and they said that it was fine for me to stay on the ball.
By 17:00 my contractions where 1:10 and I was breathing through them by taking a sharp breath in and long slow breath out and I was just focusing on making the out breath as long as possible, Mike had put the TENS machine on soon after I got out of the bath and it was so helpful I keep turning it up. (I remember at this time not being sure if I was in labour yet but hoping I was).
I keep feeling sick so was given an injection for that and some more paracetamol. By about 18:00 I timed a few contractions as I was having to breath though them for ages- everything I had read said contractions should last about a minute but mine there lasting 2 minutes! Each time meaning I was having to do like 10 rounds of breathing!
I am not sure what time as everything sorts of blurs but at some point, we had a tour of the NICU as baby was early, we where told it was likely we would need to stay for a bit. I found walking around very hard and had to stop a few times. After we went for a walk outside to get some fresh air it was just getting dark so I think it was about 20:00.
After we went back I think I asked to be checked but due to waters being broken they wanted to put it off as long as possible but agreed to check me at 21:00. I went back to the monitor little did I know I would be on them now until the baby was here!
I was back on the ball and the monitor kept picking me up rather than the baby which was annoying. A Midwife came in around now and was like ‘I hope you're not in Labour’ I was confused and she said they were understaffed and all other midwives were busy. About 10 minutes later my own community midwife who I had seen on Thursday come into be with us. It was lovely to have a familiar face there. Soon After this my first check was done and I was 4cm (Thank god) I remember saying ‘If someone say’s I am not in Labour I am going to kill them’. I was relieved to have made progress. I did ask at this time for an epidural I think because I was worried about how much worse it was going to get and if I could cope if it was to got more intense, I only asked twice and they just seemed to ignore me, I said to myself to just focus on each contractions one at a time and not think about later on.
The Doctor came and did a scan just to check baby was head down. I was switched to IV antibiotics but they did have some trouble placing the cannula.
I tried the Gas & Air but it make me sick so I stopped. At this point contractions where 3:10. I moved around as much as I felt able to. I went to the toilet a few times and tried to eat but food made me feel sick. At about 23:00 I was given fluids as I had ketones in my urine.
My community midwife stayed for 4 hours then left at 1am I remember asking to be checked and they agreed. I said I was not sure if I wanted to know but the midwife said it was good news, so I said I wanted to know I was 9cm with a lip I was so happy to have gone from 4-9cm in 4 hours!
The new midwife said that I could push whenever I felt like it. At about 3am I did and started pushing but after a hour there was little to no progress and my contractions has spaced right out back to 1:10. I did not like pushing and in hindsight I was not ready to push at this point. The doctor come in the checked me and I was still 9cm with a lip which was really frustrating, at this point I was suggested diamorphine which I decided using the BRAIN tool was a good idea for me as it would allow me some rest and they would check me again in 2 hours. They also started the oxytocin drip at the same time to get my contractions to pick back up.
I remember the atmosphere in the room really changed I think the midwife that come in at 1am was really annoyed and disappointed with herself for making me push and in hindsight I should have requested a different midwife because I didn't feel like her energy was positive from there on out.
I really liked the diamorphine and I had a hot blanket over me. Baby’s heat rate was a bit of a concern during this time as baby was sleepy but they know this was down to me having the diamorphine so where not to concern just keeping a close eye on it.
After the 2 hours ish at about 7:30am I was checked again and the lip was still there I was told at that time that I would need a C-section if it did not go by the time the doctor came back (she was just going in to do someone C-section) I remember thinking well that's not happening.
At 8am there was a shift change and the new midwife was just what I needed. She was lovely and so encouraging (I had met her briefly the day before) . I remember her saying during hand over ‘she’s 9cm how is she so calm?’. Mike suggested that I move as I have been laying on the bed for a few hours. I got up and tried to pee but could not go, the midwife then suggested an in-out catheter which I thought was a good idea as I felt I really did need to pee. She got the student midwife to do it which I was ok with me and my bladder was full! As soon as that was done she checked me and the lip had gone and I was fully dilated! Thank goodness for that.
This new midwife was really amazing she helped me with my hypnobirthing visualisations and really encouraged me - she was just what we needed, I wish we had asked for a new one sooner it goes to show how a change of person can change the atmosphere and the outcome.
I pushed in a few different positions but in the end was on my back with my legs up on people’s hips holding on to hand holds, pushing was definity not my thing, I know some people like it but I was not one of them. They placed the clip on baby's head at this point They did ask me and I said ideally I would not like to but they said they wanted to monitor baby closely so I agreed. After about 1 hour and a half hours of pushing they could see babies head and got me to feel it but baby was getting tired and they wanted baby here so they suggested an episiotomy and by that point I was exhausted so I agreed. At that point Mike had also been awake for 28 hours and not eaten loads he was being one of my feet holds and I remember not being sure about that and telling him not to pass out. As soon as the episiotomy was done on the next push babies head came out and Mike had to keen down, on the floor! I think it was just suddenly all a bit much for him but I remember thinking I’m the one pushing a baby out why are you on the floor!
One of the staff took his place and with the next contraction baby was born and the student midwife handed the baby, up to my chest.
I rubbed and talked to baby and then had a look and saw that it was a boy!
He was a bit blue and the room we were in was not big enough for a resuscitaire unit so he went next door with Mike and the peds doctors to get some oxygen which I was fine with as I know it might happen due to him being early and the diamorphine.
He was back on me skin to skin within 8 minutes. His placenta took a while to come out and it was suggested that they might have to move me to theatre to get it out but luckily that did not happen. We asked the midwife to show it to us after and she was excited to see it had a succenturiate lobe which she said is rare. This happened while they stitched my esposity which was nice as it offered a distraction.
A few hours after he was born, he was weighed at 5lbs 13oz. While weighting him they wanted to put the baby tags on and asked about a name and we both just looked at each other and said he's Max.
As my mum and sister were at our house but wanting to go home we asked if they could come in so they got to meet him when he as only 3-4 hours old which was lovely, I never thought I would have anyone visit while in the hospital but it worked out great.
I had a shower and after that we were moved in the NICU.
They were not really worried about him but just because he was small and not getting breastfeeding well, they wanted to keep an eye on him. We are lucky that our NICU has rooms called Kangaroos care rooms so I could stay with him in the room the whole time. The staff were very hit and miss, some were great, others not so much.
We got in at about 4pm and I don’t think we saw a doctor that day. Once we were all settled in we made the decision for Mike to go home about 8pm so he could get some sleep and feed our cat and bring me items from home the next day.
An odd thing had happened somewhere between the labour ward and NICU. I lost my phone! know it was there before I got in the shower and while I was in there Mike and the midwife we're packing all our stuff up and tidying the room. It all got kind of messed up and chucked into a big shopping trolly which I found a bit odd. But once we got to NICU I asked Mike where is my phone and we went through all our bag and couldn't find it Mike and the nurse went back to the labour ward (but our room had been cleaned) and it was not there. We still have no idea what happened to it so that was confusing.
Mike went home and the next thing we were told by the doctor was that he was doing fine and if we could get feeding going well he could go home in a day or two, which I wish he had not said because it set me up thinking we won’t be here for long. At about 4pm one of the nurses said ‘oh just so you know its policy that if baby is not feeding well after 24 hours, we have to top up with formula. I was thrown and didn’t know what to do. I wish they had told us sooner. I did not want to use any of the formulas they had I wanted to use a goat one because the research I had done showed it has less lactose and was easier to digest for small babies. So I got mike to rush to the shop to buy some before they closed. She also did not say at the time that he should also buy nipple shields.
So Max was born on a Monday, on Tuesday we were told to top up with formula then on the until Wednesday to also go buy shields. I walked to the hospital pharmacy and that was a bad idea. I was so slow and really not ready for that!
The Wednesday evening they also wanted to check his bilirubin leaves and he was jaundice so had to go under the blue light. He was in the middle between light treatment and blood transfusion which we would have to transfer to a different hospital for. I really did not want to transfer but at the same time I know a person who worked on the NICU there so was not too worried if we did need to. He was under the lights for 48 hours they keep having to do blood tests on him and after that he come off for 12 hours to see if they jumped back up they did but not loads, they was a discussion in our doorway with the peds doctor who wanted to let us go home and the nurses who wanted us to stay as he was not following the NICE guidelines. After he left we agreed with the nurse to stay. I could tell they were just trying to do their jobs and a bit annoyed at the doctor making decisions in front of us that they did not agree with.
Mike's parents got to meet Max and we packed up most of our bags ready to leave and got told about about 8pm on Friday night we could go home. Mike's parents left and just as we were getting ready to leave I reminded them that he had not done poo in two days. So they said that’s not right. It's probably the formula that made him constipated and give him gel suppository and showed me how to do it at home, which was an odd thing to be doing to your new baby.
I remember asking them about feeding and if I needed to keep using the formula, and they recommend we but did said if he is breastfeeding well we could do less top up. That night after we got home we went to bed about 11pm and Mike slept through the night and could not be woken up. I did not feel like I had the energy to get up and go downstairs to make a bottle, I think I kept pumping that night but can’t remember. The next night he had urate crystals in his nappy again (he did at day 2 in NICU too) meaning he could be dehydrated and I felt so bad we got right back on the bottle top ups and I pumped and we really did triple feeding probably.
I remember Mike asking me the second night how long we would have to do this after like the 3rd time I asked him to get up and make the bottle and I just remember looking at him stunned like I have no idea and also this is what I have been doing each night in the NICU and really releasing he had no clue what it was really like to feed every 3 hours. Because it is not 3 hours of sleep and then I feed the baby it. Wake up feed baby for 20-30 mins, while bottle is being made, then feed baby the bottle, hopefully he then goes to sleep, then pump for 30 mins to up supply by that time an hours and a half has gone by and you have 1 hour and a half to sleep before you need to wake baby up and do the same thing all over again!
We only did this for a month and they slow weaned him off the top ups and a 10 weeks with local group support I also weaned him off the shields. In the end we breast until 28 months and in to my next pregnancy.
Despite my birth plan not going how I wanted it to. In fact my birth plan was never even read. I felt like his birth was positive. I knew what my choices were at each stage and I did feel listened to amd ultimately that is what is important.
Thankyou so much Elisa for sharing your story! What a brave start to motherhood!
For a deeper understanding on what a NICU experience may involve, have a listen to our Podcast episode on NICU care.