Read the inspirational stories of courage and fight for survival from these amazing premature babies born at 25 weeks gestation throughout Australia including advice from their parents.
Premmie Babies Name: Jacob James Ferguson
Gestation Born: 25+2 weeks
Weight When Born: 850 grams
Length When Born: 23.8 cm
Current Age: 10 yrs
Current Weight Now: 39kg
Babies Outlook/Ongoing Issues: Jacob has slight cerebal palsie,is intellectually impaired,and still has chronic lungs
Advice From Parents: stay positive..except the rollar coaster ride its well and truly worth it in the end.. there is no such thing as “what if” its what you have to look forward to tomorrow that counts.
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Premmie Babies Name: Kadee and Samara
Gestation Born: 25 weeks
Weight When Born: 752g and 769g
Length When Born: 23cm
Current Age: 23 months
Current Weight Now: 10kg
Babies Outlook/Ongoing Issues: Kadee - Had laser surgery Stage 3 ROP with Plus Disease both eyes (ongoing issues???), has Chronic Lung Disease (requires O2 with illness only), also suffered a Staph infection at 5 weeks old (caused subglottic stenosis and osteomyolitis – now has tracheostomy and will require regular surgery to lengthen her right radius). Has grommets in both ears due to consistently failing pressure test in hearing exams. Delayed language development.
Samara – Delayed language development, no ongoing medical issues.
Advice From Parents: Talk to those parents around you in NICU/SCN, either on the ward or in the expressing room. There are many others there that are experiencing the same things and suffering the same anxieties. Whilst the nurses are good at counseling, many have not travelled the prem road so cannot offer you the exact level of support and interest in your baby that other parents can. Try not to lose contact with your new found support group either as the prem journey doesn’t finish as soon as you leave the hospital.
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Premmie Babies Name: Ava
Gestation Born: 25+6 weeks
Weight When Born: 535grams
Length When Born: 31cm
Current Age: 41 months
Current Weight Now: 11.3kg’s
Babies Outlook/Ongoing Issues: Some bowel issues (constipation), weight gain is slow, chronic lung, mild sensory issues, poor head growth. Although ava has these issues she is developmentally ahead and requires no intervention. Still unsure as to the head growth outlook
Advice From Parents: I would advice parents to take the time for each other and their other children if they have some. Family is so very important and having some ‘space’ to be normal is vital.
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Premmie Babies Name: Isabelle
Gestation Born: 25+2 weeks
Weight When Born: 634grams
Length When Born: 27.5cm
Current Age: 30months
Current Weight Now: 11.7kg
Babies Outlook/Ongoing Issues: Isabelle is a happy and healthy little girl(well we think so). She has chronic lung disease and sometimes requires oxygen when sick, and had a 1.5cm hole in her heart which self corrected. Isabelle also has some developmental delays but nothing to serious, and a few problems with her bowles due to her having had NEC.
Advice From Parents: I would have to say “Take each day as it comes”.Never give up hope, while Isabelle was in NICU everyday I would tell myself “Where there is life, there is always hope”.
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Premmie Babies Name: Maxx
Gestation Born: 25 weeks
Weight When Born: 835g
Length When Born: 31cm
Current Age: 13 months
Current Weight Now: 9.5kg
Babies Outlook/Ongoing Issues: Maxx has chronic lung desease and aftering being told he would be on oxygen until he was 2 yrs old he came of it at 9 months. He is a bright, happy little boy with no other issues.
Advice From Parents: Take everyday as it comes as it can change so quickly. Lean on other premmie parents for support as they are the ones that know what you are going through. And NEVER give up hope, they maybe small but they can surprise you in an instant!
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Premmie Babies Name: Lennon James
Gestation Born: 25 weeks
Weight When Born: 585g
Length When Born: 30cm
Current Age: 25 months actual
Current Weight Now: 9.6 kilos
Babies Outlook/Ongoing Issues: chronic lungs but only needs oxygen when very sick, poor weight gain and severe sensory feeding issues/oral aversion. developmentally he is behing but nothing too serious, started to walk just before his 2nd birthday. Confident, happy, funny strong-willed determined little boy that loves music, noise, singing and dancing and acting!! also has a small head – looking into this currently. all other premmie issues overcome – PDA, jaundice, hearing loss, ROP, infections, hernias, food intolerance and severe reflux.
Advice From Parents: keep intouch with your premmies mums and dads – ours have all grown up together and 2 years later we still have our support/playgroup going. get informed and go with your instinct when you know they are getting sick etc. treat them as the precious ones that they are!
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Premmie Babies Name: Aaron and Zachary
Gestation Born: 25 weeks
Weight When Born: 658g and 1085g
Length When Born: 32.5cm and 36.5cm
Current Age: 7 years old
Current Weight Now: 18kg and 19 kgs
Babies Outlook/Ongoing Issues:
Aaron had a hernia opp before he was first discharged from hospital. At the age of about 1 he had grommerts inserted in his ear drums because of a small drainage canal. other than that he had a slight developmental delay.He is pretty much a normal child now.
Zac had both hernia opp in his first year. He is a normal child now.
Advice From Parents: I found alot of comfort in being able to talk to other parents.I lived a 40min drive from the hospital where they were born and was unable to see them every day, because of another baby at home.I called every day at all hours and the nurses kept me informed on how they were doing.
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Premature Babies Name: Lennon James
Gestation Born: 25 weeks
Weight When Born: 585 grams
Length When Born: 30cms
Current Age: 25 months actual
Current Weight Now: 9.6 kilos
Babies Outlook/Ongoing Issues: Chronic lungs but only needs oxygen when very sick, poor weight gain and severe sensory feeding issues/oral aversion. developmentally he is behing but nothing too serious, started to walk just before his 2nd birthday. Confident, happy, funny strong-willed determined little boy that loves music, noise, singing and dancing and acting!! also has a small head – looking into this currently. all other premmie issues overcome – PDA, jaundice, hearing loss, ROP, infections, hernias, food intolerance and severe reflux.
Advice From Parents: Keep intouch with your premmies mums and dads – ours have all grown up together and 2 years later we still have our support/playgroup going. get informed and go with your instinct when you know they are getting sick etc. treat them as the precious ones that they are!
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Premature Babies Name: Kate
Gestation Born: 25 weeks
Weight When Born: 820 grams
Length When Born: 33 cm
Current Age: 2 years
Current Weight Now: 11.5 kgs
Babies Outlook/Ongoing Issues: Kate had TPN leakage into her abdominal area surrounding her kidney while in the NICU. This caused damage to kidney and scar tissue. We have to monitor her blood pressure and get yearly abdominal ultrasounds to monitor growth. After 6 surgeries to date Kate is otherwise in great health. Kate is not walking independantly yet but oh so close.
Advice From Parents: I live in Victoria and had Kate in the Canberra Hospital, and I had no family or support. I made a decision early to put my trust in the medical / nursing staff. I still asked questions and I made sure that I always understood exactly what was happening and why at all times. To this day I have not regretted that decision.
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Premature Babies Name: Xi Mary Nicole
Gestation Born: 25+6 weeks
Weight When Born: 720 grams
Length When Born: 31 cms
Current Age: 28 months
Current Weight Now: 12.5kg
Babies Outlook/Ongoing Issues: We still have problems with her chronic lung disease after being home on oxygen for so long, and a cold can put us back into PMH for a few days on oxygen whilst she recovers. She’s average for her corrected age in everything from speech, size, language, social and behavioural skills. We still have issues with her excema every now and then, and will be needing glasses as she gets older. I just consider us lucky after the 17 weeks we spent in NICU waiting for her to come home, not knowing what the future was going to hold, just knowing that atleast I had her with me was enough.
Advice From Parents: Hold in there. It seems tough and stressfull when your sitting next to there cot day in and out, waiting for them to be allowed home. Cherish those cuddles and smiles, and be thankful that we live in a medical age when our little premmies can make it through.
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Premature Babies Name: Jacob Kenneth
Gestation Born: 25 weeks
Weight When Born: 720 grams
Length When Born: approx 25cm
Current Age: Just turned 1!
Current Weight Now: 8kg
Babies Outlook/Ongoing Issues: Jacob spent 15 weeks in hospital (after a very complicated pregnancy in which we lost his twin). When he was born, I could fit my wedding ring over his leg. His ID bands had to be strapped to him as they were too large, and his nappy was the size of a credit card! He began on the high frequency oscillating ventilator with nitric oxide and surfactant treatment, high doses of caffeine, morphine, TPN, IV lines all over his body and many other aids… It took weeks before I could hold him. Jacob has since overcome his PDA, ROP, NEC symptoms (every time he was primed with breastmilk), factor IX deficiency, bradycardia, constant sats/desats, apnoea and cynosis episodes, and besides the scars on his body he does not look preemie! Jacob was also diagnosed with a condition called Septo-Optic Dysplsia for which we were seeing an endocrinologist, neurologist and opthalmologist. We still have physiotherapy sessions and preemie reviews, but otherwise life is getting very normal. Our little man suffered many specialist tests through his NICU stay and beyond. He was re-intubated with several episodes of sepsis, had pulmonary hypertension and haemorrhage, a brain haemorrhage, 9 blood transfusions, and had many setbacks as often happens in NICU. But he is doing wonderfully well now! And he is so precious… an absolute gift from God and a beautiful playmate for his big sister (11 months older). He still has chronic lung disease, and we have had many trips back to hospital, yet we are blessed to have him.
Advice From Parents: The best piece of advice I heard from a NICU nurse was not the typical “it’s a rollercoaster ride” and “two step forwards, one step back” etc. Her advice was that “in NICU, we do not take things day by day. We take them instead hour by hour”. There is really no better way to say this, each and every hour could range from wonderful news to dismal news. It could range from heartbreak to joy. The NICU is a very scary place to find your baby. The time there is full of constant exhaustion, fear, stress, good news and bad news, milestones achieved and the extreme changes in health. It is so important to start doing your baby/ies cares as soon as possible. This really helps you to bond with your baby, and to be confident that you can look after them on discharge. I also believe that God has brought us through this difficult time. The Lord has certainly blessed me with the strength, the patience and resolve to be a NICU mum. With Him, this was incredibly difficult. Without Him, I doubt I would have been able to get through it.
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Premature Babies Name: Cael & Beau
Gestation Born: 25 weeks
Weight When Born: 840g & 968g
Length When Born: 25cm & 28cm
Current Age: 3 years
Current Weight Now: 13.5kg
Babies Outlook/Ongoing Issues: Cael has chronic lungs still requires O2 whilst asleep, severe ROP and disease in left eye wears glasses and will have ongoing issues, had hernia very early and was not able to be corrected until strong enough therefore caused damage to one testicle which had to ultimately be removed, small VSD which remains untreated as very minor but otherwise a very happy, energetic and stong willed little boy…
Beau was not so fortunate and lost his battle with a staph infection after surviving treatment for 40 days….
Advice From Parents: TALK….. I know you don’t feel like it and you find all the advise overwhelming but take in as much as you can, take a note book into the nursery every day and write down everything you hear and ask for explanation later so you don’t have to try and remember everything. TAKE PHOTOS as many as you can possibly get and if possible take VIDEO trust me it will be the hardest thing you will ever have to watch in later years but will also be priceless for your baby/ies when they are older. When you finally get your baby/ies home work with them as much as you can with the issues they have been identified with it will only do them good for the long term, you never know how they will turn out so just keep going… take some YOU time out as much as you can also and ACCEPT HELP…..
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