Lilia, 25 Weeks


Miracle Mum Renee shares Lilia's story:

Lilia Anh-Nhan Viray Nguyen who was born at 25W+1D weighing 786grams and with the best cry premature baby can ever tell you.
My sweetest darling has had a positive NIPT test at 10 weeks (Trisomy 13) where we went and undergone amniocentesis at 16 weeks as we had a higher chance of miscarriage despite to be a rainbow baby. At 18 weeks we received a false positive result and at 19 weeks, after a pelvic ultrasound check up, my cervix was 1.5 cm dilated to then being told it caused by a short cervix. Fairfield Hospital the Maternity Doctor has recommended for me to decide within 12 hours to undergo a surgery called (Cervical Cerclage). Despite being early second trimester, I underwent for the surgery receiving epidural with a successful result where it became a "High Risk alert" were deemed as bedridden whilst during recovery, after being discharged only after just to come back 3 days prior to surgery, experiencing 42degree fever with IV drip for antibiotics and progesterone for 3 weeks at the maternity ward. During this complicated time, we were advised by the doctor that if Lilia was to be born earliest of 23 weeks, Lilia would be resuscitated and had a small chance of surviving. However, Lilia loves to dance when I sing her "Barney songs", she definitely loves to burp and hide whilst in my belly.
Lilia's story began on our birthday on the 16th of June.
On the 15th of June, I had an emergency admission for a slight bleeding where a gynaecologist had undergone a metallic vaginal speculum only to discharge me that night knowingly there was a FMU appointment for check-up the next day. On the 16th of June at 9am Doctor had stated that the stitches had been abrupted and in need to go for an emergency c-section on that day.
(It is a complicated pregnancy being already a vulnerable)
Then at 12pm, we were monitored, where we had magnesium at 3pm, at 5pm the nurses had encouraged to be ready to be escorted to the surgery room where I had 3 operations under 45 mins. The Epidural, The C-Section and the removal of Stitches where I received Morphine and I had sepsis after the surgery.
Lilia was told that if she cries, it is a good sign as we held our breath, she listened! She cried 3 times to direct her straight to NICU where the nurses and doctors had welcomed her new bed. During her first few days, it is normal to drop her weight because of water tension subsiding, Jaundice is a Blue Light that prevents infection to the skin had 2 weeks old for 3 days and received fortnightly Blood Test, Lilia loved her breastmilk and enjoys her kangaroo cuddles! She did have some struggles being on CPAP on her first 10 weeks where she had received NAVA on and off for 6 weeks from 40%to 21% oxygen as Lilia experience apnoea (It is very common) She started High Flow at 30 weeks old, Lilia had received Blood Transfusions, Enema, Magnesium, Eye Ointments, Folate, Calcium, cream for her rash from CPAP and lots of lots of breastmilk, Lilia's belly grew so big that became so uncomfortable where her groin area had water tension from the NAVA, as it is always good to be reminded it is temporary.

I was told that Premature Babies commonly have a cyst and blood in the frontal cortex in our brain. However, Lilia had a cysts in the wrong area of a right side artery, IF Lilia's cyst grew as she grows older in a wrong vertebrae located in the Central Lobe (Central Sulcus or Motor sensor area) while left untreated or un-monitored, It can lead Lilia to a very serious harm and life threatening without a surgery.

At 32 weeks, Lilia had Graduated from her CPAP and moved to a bigger side of the bed! Whilst Rainbow cottage was by your side to teach us and understand our babies more. Lilia loves, adores and enjoys doing kangaroo cuddles, as her heart rate stabilizes whilst she rests on my chest from up to 6 hours. Lilia looks forward to having her (Cotton Ball and my breastmilk) Lollipop and She loves listening to the doctor's hand overs and stares at all of them as part of her routine, Lilia always gets very excited when nurses and I comes to turn her over to her other side. She loves hand cuddles, listening whilst singing songs,
We loved every second with each other especially with the word of god through our prayers.
Despite the challenges throughout the pregnancy/FACs/DOCs or CPS had started a case where they presumed Lilia into care at 34 weeks, the prenatal case worker had seized us from breastfeeding as it is not considered as practical considering visitation was only 1.5 hours for 3x a week. I had was told that I am not a capable mother to Lilia because of my BPD diagnosis in 2016 and a risk of medical neglect to my daughter instead of having a support and resources the DCJ prenatal case worker can provide. Since 34 weeks to current March 2024, I had no right to know any medical treatment for Lilia as it is a DCJ job where it lead to the doctors and nurses at NICU are very furious with of how it has been handled.
Premature babies are not as well supported as I though by DCJ or Foster Placement Services whilst taken into 4 Hospital Transfers and 3 Foster Carers in under 5 months. The current foster carer had missed 1 month of no medical appointments at 3 months (GA) during her 4th Hospital transfer to. Nepean as the argument that goes by social workers, Lilia is deemed as an average baby now.

Lilia is 9months weighing 6kgs, residing in Foster Care who un-religious and a 60-year-old happy Australian woman. I fight every day that Lilia will be restored to me through prayers as she is a child of God. Lilia has always been so strong where Lilia and I believe that GOD is always watching over us and our families, we have faith.

We will always be forever grateful for the beautiful blessings, the lovely staff and volunteers that comes every morning with goodies and smile from Miracle Babies, The beautiful amazing NURSES and Doctors! Lactation Nurse ❤️, Do not forget Debbie (Social Worker) and Nursing manager, speech pathologist and most importantly the support from other parents from NICU who my best friends are now where we find ourselves constantly shopping at TEMU. I just cannot thank you all enough for the strength, the tears, the voice, the advice, these beautiful spots of beautiful handmade mittens for miracle babies, these cute dresses to! our constant goosebumps to keep our little butterflies as steady as possible.
May god bless you!

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