Pregnancy after NICU - a live blog!

Please note - This was the live week by week blog of the second pregancy of SuperDinky co-founder Lorna, after a 31 week premature baby. Spolier alert, despite high anxiety this blog has a happy ending (as does Lorna). 

 

Before conception - after having a 31 week premature baby in 2019 my husband and I decided we were one-and-done. We couldn't risk going through the NICU journey again. We were not sure our mental health and relationship would survive the stress. Whilst we initially made peace with our decision, 3 years passed and we still felt like there was an empty chair at our table. We had always wanted two children. We both resolved to get our mental health into a good strong place with the help of therapy/meds and once settled decided to try.

 

Day 1 - positive test - we had assumed it would take a year or so to concieve but we very quickly got a positive test which led to a mix of joy and fear! Eek! What have we done?!

 

7 weeks pregnant- I get an early private scan to settle my anxiety and check baby is in right place and cervix is shut tightly. All looks ok and we tell family and friends who we know would support us if we had a miscarriage. We want people to know this life existed, even if it doesn’t stay.

 

12 weeks - hospital scan. With my first baby scans were exciting, a joyful opportunity to see your baby that you were certain was fine. We know more now. Our scan falls in Baby Loss Awareness month and we have been let into the secrets of other parents. We know more about missed miscarriages and the heartbreak they bring. This time the scan is an anxious wait until life is confirmed. the technician shows up a picture of a foetus which is still, he says nothing. We brace ourselves then both my husband and I say in unison, "is it alive?!" He looks surprised and say yes. The foetus wriggles intensely, as if to agree.

 

12.5 - My boobs are huge already so I buy new bras but I don’t buy nursing bras as that feels like tempting fate. Will my cervix keep baby inside long enough to be viable? I hope so.

 

13 weeks - my brother's partner is pregnant, they are 6 months along and have done very little baby preparation. I want to scream at them, DO IT NOW, your baby could come today!!!! But I do not. Instead I resolve to do a zoom NCT style course for him which is gentle and joyful but also informs him of things which can happen to 1 in 7 of us. I don’t want him to be blindsided like I was.

 

14 weeks pregnant- I have a small bump. I take pics daily to put in a memory box. This life is important to me and as a visual person I know I will want photos to cherish if things don’t go well. I didn’t keep a pregnancy memory box last time as I was blissfully unaware of loss. This time it feels imperative, just in case. I don’t want to be left with nothing in my arms. If nothing else I will have a scan and bump photos. 14.5 weeks - it’s been 2 weeks since I saw the flicker of a heartbeat on screen. Is it still there? Or has the baby stoppped growing and my body hasn’t realised. This tragedy happens in 1/8th of pregnancies so why wouldn’t it happen to me. I try to stay positive and joyful, whilst in the back of my mind I consider booking another private (expensive) “proof of life” scan.

 

1 4 and a bit - my dad says “nearly half way through” I say “we’ll it depends if I make it to 40 weeks or 22 i guess, time will tell” he says “you’ll make it to term this time.” This makes irrational anger bubble up inside. He means it kindly but how can he know? Why say this when my track record says differently? If I don’t will this make me feel guilt again? No, I will make it as far as I make it and that is ok. I will do my best and I hope my best will be at least 22 weeks. I’ll be grateful of every single day after that.

 

14.5 - I resolve to have a 22 week party to celebrate getting to a milestone which feels huge to me. It’ll be a baby shower of sorts, one I didn’t experience last time. Only people who were really there for me last time will be included. I have lost friends along this NICU journey and that hurts but I have changed, I have experienced trauma, and I need people who get the life changing impact NICU has had on me. They are my people now.

 

16- I had a midwife appointment to check my blood pressure and breathing. I asked if they could check there was still a heartbeat; they said they sometimes it’s hard to hear so causes anxiety for everyone if they can’t find it. Riddled with anxiety I book another private scan. Officially it’s a gender scan but for me it’s a proof of life and is my cervix fully shut scan.

 

16- I allow myself to consider that this pregnancy might end in a baby and reach out to a doula. I had one with my first baby and I’m convinced her presence enabled me to have a positive birthing experience despite its being far too early. I find a new doula called Jen (Jen Culley) who tells me she had supported a NICU family before. She tells me how she stayed with the mum whilst the dad went to NICU with the new baby, then text photos of the baby to her to show the mum. She talks of the emotional support she offered to the mum, accepting calls of her crying and venting and saying the things she didn’t feel able to say to her partner, friends and family. This hits me with an involuntary pang of pain and jealousy. No one went with my baby, we were separated immediately and he was alone. When I walked into NICU I didn’t know which baby was mine and someone had to show me. No one gave me a place to cry or vent when I felt I had to be strong. Jen seems like a good choice. We work out a plan where she supports us with antenatal classes based upon having a premature birth, and then if we end up getting closer (big IF) then we can do another session based on birthing more actively. Last time I prepared for a full-term active water birth and that seems like a cruel joke now. This time we will prep for a hospitalised, monitored birth where I am strapped to a bed on my back. We will prep a birth plan which means my baby is not left alone. I’ve read about babies being put onto their mothers chest whilst a Med time stabilise them with breathing equipment in situ. I don’t dare hope for this level of bonding but I do want to touch my baby and see it’s face before it’s rushed away this time. This feels like a selfish thing to say, that I want to steal 2 seconds of its time before it gets the help it needs but we need it. Both and I the baby need it. The damaged caused without it cuts too deep and affects too much. We need it.

 

16.5 - I get an email quote from the doula for what we discussed. It’s a lot more than we paid for our doula last time. Damn having pregnancy anxiety is expensive. My mental health is my top priority to get through this will less wounds than last time, but I'm also a stay at home mum with zero income. I have savings so I resign to think about it.

 

17- I have my first preterm clinic appointment. I’m hopeful they will offer a real solution. There is no clear reason why my baby came early last time but my suspicion is that my cervix opened early. I’d like them to say “hello, yes we absolutely will keep your baby inside as long as possible, have a cervical stitch to keep the doors bolted until 37 weeks. We’ve got you!” let’s see…

 

I’m in the appointment room. They have just taken swabs to test for vaginal bacteria, and given me a tummy scan and transvaginal scan. The consultant has been really reassuring. They will measure my cervix length every 2 weeks until 28 weeks. The first measurement is 2.9cm, this is positive as they worry if it’s 2.5cm or less. There is a line down the middle of the cervix on the screen which shows the opening. She pushes on my stomach to see if it shows any sign of opening. It doesn’t. The will rescan my cervix every 2 weeks to check it is staying shut. If it starts to open there are two options, a cervix stitch or progesterone inserted vaginally. I'l do whatever it takes to buy the baby even one more day in the womb.

 

My placenta looks like it is close to my cervix which can increase risk of bleeding at birth but it’s 1.5cm away and she hopes it will move to at least 2cm away as the pregnancy progresses. She books me in for a gestational diabetes test because I tell her my preemie was big for his gestational age. This throws me a little because I wasn’t anticipating this and it feels like an extra worry.

 

The consultant plugs my data into an app and it predicts the likelyhood of a premature birth. Right now I have a 12.1% chance of before 30 weeks, a 25.9% chance of before 34 weeks and a 39.5% chance of before term/ 37 weeks. The hope is that each time she enters my cervix measument the risk will reduce.

 

 

 

17+5 - Its world prematurity day 2022 and I had booked another private scan not realising I would be scanned at prematurity clinic. I just wanted to hear my babies heartbeat and have reassurance that it was ok. Because I’d heard that the baby was ok on Monday this reduced my scanxiety and I allowed myself to feel like this was a “safe, nice” scan, one we could maybe even enjoy!

 

My husband came with me and we saw the baby wriggling around with a strong heartbeat and kicks. We had both been secretly predicting and hoping for a girl but it’s a boy. One of each would have been ideal but having learnt all that can go wrong in pregnancy it just feels like such blessing to have made it this far.

 

The baby has a big tummy and skull, like our son. His knees are tucked up in a ball and his head is nusled against the side of my womb like he is cosy, just like my son snuggles up to me. I allow myself to consider the hope that I might end up with two sons at home.

18 weeks - i feel tiny kicks and decide to allow myself to feel joy and hope. The preterm clinic put my data into an app and it says based on my cervix length and previous birth I have 1.1% chance of giving birth in the next 4 weeks. That feels reassuring so I am allowing myself to enjoy the next month of pregnancy.

 

20 weeks - Another scan with the preterm clinic shows that my cervix had maintained the length of over 2.5cm. In fact it is longer this time, which may just mean part of it was hidden last time. This keeps my risk of preterm birth within the next 4 weeks at 1.1%. This is hugely reassuring because it means the baby is likely to come after 24 weeks, a big milestone in my mind!

 

21 weeks - The anomoly scan was tricky as the baby was hiding face down and legs scrunched up. The sonosgrapher wasnt able to get all the measurements they need so I have to go back next week. I also met Jen, the doula we have decided to hire. She asked lots of questions around birth planning for both pre-term and term births. She send me a link to a midwife led birthing suite and it made me feel a bit sick. Yes I'd love to birth a fullterm healthy baby there but I cant bring my mind to even consider that as a possibility. There is a strange comfort in expecting and accepting that your next birth will be a preterm one. At least I wont be like a deer in headlights this time.

 

21.5weeks - I have been having some anxiety symptoms this week. I think things are starting to feel real. Adding another human to the family will be a big adjustment to us all. My NICU baby and I are so close that I feel scared of anyone disrupting that bond. In my head I know i have enough love to spare but the thought of not having the same relationship with my preemie as I do now is hard to think about. Nearly loosing a child makes you want to hug them tighter and never let them go.

 

23 weeks - It’s New Year’s Eve and my husband asks me the harmless conversation started of what I’m most looking forward to next year. I stare blankly as all I can think about it how incredibly hard 2023 will be. I imagine that’s I’ll have spontaneous premature labour again and a NICU stay. I’ll feel like a medial staff member instead of a mum. breastfeeding will be hard and feel like a vital job not a joy. I’ll struggle to bond with my new baby as I did with my son. I imagine I’ll get post natal depression and anxiety again and become withdrawn and isolated, just like last time. I’ll be sleep deprived I’ll have a short fuse; even with those a love most. Maybe it’ll be even worse this time because maybe I’ll have no patience with my son who is the love of my life. I spiral. All I have to look forward to in 2023 is getting through it. Surviving it with minimal emotional scars.

 

But then I remember, then is not now. Then is not now. Maybe this time will be different.

 

31 weeks - This is the gestation I had my son. I know this weekend will be a hard one for me so I proactively plan in some fun things which will get me out of the house and stop me from overthinking. I stay over at my sister in laws house and have brunch with a friend. It feels huge that I have made it this far in the pregnancy as I had convinced myself it would come very earlier than last time.

 

33 weeks - I'm 33 weeks pregnant which seems impossible. Every day I’m more pregnant than when I had my NICU baby. With each day the baby kicks more. He kicks mainly in the evening once I’m still and my NICU child is sleeping. The kicks are painful, they are strong and it hurts. But there is another pain. The pain that I never got to feel this last time. That my baby left my womb before we had chance to bond over kicks. That he was born before the part of pregnancy where it’s undeniable that you are growing a baby within you, one that wiggles and twists and makes your stomach move involuntarily. It hurts that I never experienced this before. That I watched it happen from a purple plastic armchair, next to a plastic box, feeling so disconnected and helpless.

 

It’s good. And it hurts.

 

33 weeks+ 5 - Every day that my baby stays inside my womb past 31+2 feels like a huge gain. It’s a day I don’t have to sit by an incubator feeling helpless. It’s a day where my baby is still being nourished via placenta rather than by tubes. Every single day is a day that I celebrate as an additional milestone. It’s the first thing I think of in the morning and the last at night; we made it another 24hrs.

 

My mind tries to do the maths, to answer impossible questions. If my waters broke today, would I still need steroid injections to develop the babies lungs? If my baby was born today would they have a shorter NICU stay? If born today would their face be covered by CPAP and jaundice eye covers so I can’t see them to bond at all? Would I be able to hold my baby quicker than the agonising 3 day wait I had last time?

 

But it comes back to this. I know even if I make it full term, even if I birth at 40 weeks or more, there is risk of NICU being required. 60% of babies in NICU are full term. There is no gestation goal which can protect me from what I fear. I just have to hope and take it one day at a time.

 

34 weeks - I now have a bowling ball sized bump. I look really pregnant for the first time in my life. I can't put my shoes on easily, my walk has become a waddle, I have to sleep upright or I feel sick... and I'm so grateful.

So unbelievably grateful to be this huge and to experience this part of pregnancy. I felt like a fraud before because I barely had a bump before my baby was born early. Now Ive got a big bump. Im undeniably pregnant. I've got all the aches and pains that people have complained to me about (as I have sat in silence) and im so grateful for it all. This pregnancy is different. When they say each pregnancy is different, it really can be true.

35+4- Baby is kicking like crazy, it’s really strong karate kicks and punches. Its suprisingly painful. When my first baby was growing I only felt gentle kicks because he was born at 31 weeks. I can tell this baby will come out chubbier and stronger because of the power behind it’s kicks. I think of my Prem baby’s tiny little skinny legs and feel so guilty and sad that he never got to this point. The kicks hurt but I’m just so insanely grateful that the baby is staying put. Every day feels like one which I won’t spend next to an incubator. I’m out of my depth as everything feels different so I don’t know what is normal for this gestation. I have to assume my fat face, swollen fingers and the intense painful kicking are all normal third trimester pregnancy things! I'm holding onto hope that I'll make it to 37 weeks this time.

 

36 weeks - Beth reassures me that even if the baby was born now it's not likely to need a stay in SCBU or NICU. I'm not sure this is true because 60% of babies in NICU/SCBU are full term babies who need some help. Either way, this baby is very almost not preterm now which is something to celebrate. I'm counting down the days until 37 weeks when the term premature will not apply, whatever happens.

 

37+2

Baby came today! He is healthy and a solid 8lb 14. He came so quickly that instead of birthing at the labour suite or sanctuary birthing Center (midwife led unit) I gave birth at HOME! In my own bedroom! My doula Jen arrived just in time, for the last 20 mins of labour and helped me to have the faith that I could deliver my own baby. She arrived as the babies head was crowning and told me to trust my body. She helped me to take a deep breath in at the start of the contraction to welcome it and as it moves through me to “blow away” the pain.

 

When I told she I couldn’t have the baby at home, she just said “you can let it happen, you’ve got this” A few surges later kneeing against my bed my baby was born into my own arms. I caught him and held him to my chest, cord still attached. He was purple but making little noises and began to turn pink within a few minutes.

 

The ambulance then arrived, and no one tried to take my baby. Then the midwives arrived and again no one tried to take my baby. I lay my bed and had skin to skin with my perfectly healthy new baby boy and no one tried to take him. Had this really just happened? An unmediated full term birth at home with zero intervention. I think I’m in a joyful shock.

 

 

I held off the injection for the placenta to see if I could pass it physiologically. After laying down for an hour the midwife suggested I sit on the toilet and try to wee as that can help it come out. Nothing happened. I was encouraged to cough loudly and that helped detatch it. It came out and i suddenly felt lighter. Again no one tried to take the baby, my husband has skin to skin in bed whilst this happened.

 

I had a minor tear which they stitched in my bedroom whilst I was still holding the baby. Jen was quietly reassuring me throughout and made sure I was informed of what was happening, as I had requested. Then the midwives did newborn checks on the baby, whilst he was laying on my legs. They did final checks on me and then left. My husband, Jen and I celebrated by ordering a takeaway pizza and eating it on the bed whilst the baby had its first feed.

 

It’s 4hrs post birth right now and I can’t get over how different and healing this experience has been. Compared to having an incredibly medicalised premature birth this has been the absolute opposite! Im painfully aware this doesn’t happen in every case and so so grateful that we have been able to experience it!

 

Our home birth was definitely unplanned but it was the ideal birth for us. Given all the trauma created around separation after our first baby was born at 31 weeks and in NICU for 6 weeks; this birth experience has been a salve on many painful emotional wounds.

 

The birth itself was painful but it was a lot less painful than trying to birth on my back in a hospital bed. This time i was in a position which felt good to me, I could listen to my body and gravity helped me birth. There was space for my sacrum bone to flex out of the way of blocking my pelvis. Something which is impossible when laying flat on your back in birth.

 

This time; I could move, I had no monitoring, there was only my doula Jen (who was amazing!) and husband in the room, I was at home, there was no resuscitation required, no crash cart, no baby rushed away before I could see his face. Just lots of skin to skin, breastfeeding straight away instead of pumping for weeks. No leaving my baby at the hospital or the crushing guilt of “not growing them to term” (guilt that it took lots of therapy and self compassion to overcome and reframe)

 

My baby has chubby arms! And thighs! He has hair! He looks like a baby, not a broken bird! the difference an extra 6 weeks of baking makes is just so astounding. I’m so so grateful that this one managed to stay put until (early) term.

 

Thank you to anyone who has read this live blog. Now the baby has been born I’ll stop updating it, but I’m absolutely happy to answer any questions you may have over @superdinkyuk Instagram.

 

Give us a follow and you can drop me a DM. I’m on a mission to support fellow preemie and NICU parents so happy to answer anything at all.

 

And a reminder that Beth and I run SuperDinky around being a neonatal nurse (Beth) and preemie mama (Lorna) and we’d really appreciate your support to let people know we exist. If you are able, please kindly share our blog or shop with any NICU Facebook groups or communities you may be part of. That would help us so much.

 

If anyone feels like this blog has helped them and would like to pay it forward by gifting a NICU family, this would be so gratefully received by families having a hard time. Here is the link if so. You can include a thoughtful note to the parents which we will handwrite.

 

Thanks so much for reading!

 

Now, I'm off back to my newborn bubble!! ❤️

 

With love,

Lorna

(typing on her phone at home with a baby on her chest!)