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My DD was 14 weeks premature - AMA

8 replies

Anskl · 11/03/2023 00:37

Just that, really. DD is the most curious, joyful child imaginable, but nothing could have prepared me for the challenges we would face and continue to face almost 5 years on.

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Bepis · 11/03/2023 00:52

I hope you don't mind me asking this. When premature babies are born, can you hold them straight away or do they have to immediately be taken away and put on ventilators?

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Anskl · 11/03/2023 01:04

Bepis · 11/03/2023 00:52

I hope you don't mind me asking this. When premature babies are born, can you hold them straight away or do they have to immediately be taken away and put on ventilators?

It depends on how premature they are. Most babies born after 34 weeks gestation have lungs developed enough to breathe on their own if they don't have other related health conditions.

I didn't get to hold my DD at birth because she was immediately taken by a team of neonatal intensive staff to be wrapped in a thermal bag to regulate her temperature and intubated on a ventilator. My DH got one photo standing beside her before she was rushed away to the neonatal unit. It was 5 hours before she was stable enough for me to meet her and another 12 days before it was safe for nurses to take her out of the incubator and place her on my chest for skin-to-skin.

She required help to breathe until she was 5 months old.

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Widowtoaworkaholic · 11/03/2023 01:05

What challenges do you still face now?

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Imogensmumma · 11/03/2023 01:10

Oh they must have been very tough days and months. My girl was 5 weeks early and she was tiny can’t imagine your stress at that time.

How long was your baby in neonatal?

Are there long term effects now?

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Anskl · 11/03/2023 01:42

Widowtoaworkaholic · 11/03/2023 01:05

What challenges do you still face now?

DD has chronic kidney disease stage 4 (with 25% kidney function) and an acute kidney injury as a result of an injury she sustained in the neonatal unit at 3 days old. This occurred when the line pumping nutrition into her vein migrated and pumped it into her bloodstream, causing her to almost die and her kidneys to malfunction. This means she will be on medication for the rest of her life and she will likely require kidney transplants in the future. She eats a restricted diet avoiding food containing phosphates, sodium, and potassium (bananas, potatoes, dairy, oranges, tomatoes, ready meals, chocolate, etc) because her kidneys cannot process them, meaning a higher risk of heart disease, high blood pressure, etc. Because she struggles to get enough nutrition she is below the 0.4th centile for weight and height and has a BMI of just 14.

DD failed her newborn hearing screening (which she had at 14 weeks old when she was finally stable enough to leave the hospital). It was later confirmed that she was profoundly deaf with Auditory Neuropathy Spectrum Disorder - aka ANSD (a rare type of deafness where the ear detects sound normally but has a problem sending sound from the cochlear to the brain). Doctors cannot be sure whether this was because she was deprived of oxygen at birth or whether it's related to her kidney failure which has a greater link to hearing than I ever realised. DD eventually had bilateral cochlear implant surgery shortly before her 3rd birthday (delayed by the pandemic) and subsequently, aged almost 5 has the speech and language skills of an almost 2-year-old.

Since her cochlear implantation, DD is far more prone to ear infections because the surgery drilled away into her inner ear bones, meaning infections can pass swiftly into the mastoid bone behind the ear, cause abscesses and if left untreated, reach the brain, and prove fatal. DD was hospitalised for the best part of 3 months in 2022 due to mastoiditis and subsequent ear surgery.

DD suffered a bleed on the brain while in neonatal intensive care meaning she has mild cerebral palsy and needs to wear a splint on her left leg because her calf muscle is weak and otherwise she cannot bear weight on her foot. Even with the splint, she falls over a lot and can't walk as far or as fast as her peers. She has to wear an orthotic shoe on her left foot, and we source a different shoe for her 'normal' foot which is two lengths and four widths smaller.

She has so many hospital appointments that it's impossible for me to work during the day, so I've had to take an evening job instead. In addition to this, she has 4 visits from her teacher of the deaf and speech & language therapist per week.

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Anskl · 11/03/2023 01:48

Imogensmumma · 11/03/2023 01:10

Oh they must have been very tough days and months. My girl was 5 weeks early and she was tiny can’t imagine your stress at that time.

How long was your baby in neonatal?

Are there long term effects now?

I hope your daughter is doing well? How is her growth now?

Yes, it was a very tough indeed. My DD was in neonatal for 96 days and coincidentally went home on what should have been her due date.

I was in hospital for an additional 11 days before her birth because my waters broke at 24 weeks and I needed to stay in for monitoring.

We were more than ready to go home!

See answer above for the long-term effects - I think we cross-posted.

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Jamontoast1 · 11/03/2023 23:25

Wow I’m currently 25 weeks pregnant and can’t imagine how scary it must have been for you. Was there any cause to her being born so early?

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ImSoShiney · 11/03/2023 23:31

Are you claiming everything you are entitled too? I remember being stubborn, saying I didn't need help, in hindsight I wish I'd set the ball rolling for DLA straight away, and accepted the offers of support from the hospital and social services, but I just wanted to prove I could do it alone. I wish I'd allowed bottle feeding so I could have a break from the constant pumping. Are you accepting support? Because you should, don't be a martyr like I tried to be

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