For All Premmie Mums

Hello 1stly want to thank everyone in here for the support. As a mum to prem bub (30w+1) the support and love in here was worth more than anything else anyone did for us or said to us. As you already know you’re all my angels

* SO I thought many more mums and dads will go thru the same journey thru NICU/ SCN/ Coming home, ups and downs and sicknesses and problems which plague every parents worst fears. So I figured I would write up stuff that made it easier or help in any way. Please feel free to add stuff. Might be a good resources for someone else

******************************************************* HOSPITAL - Start on diary where you write all about your feelings and journey. It is good to let it all out and also to look back on when it seems like you’re never getting anywhere. I did an online blog and added pics.

* - take as many photos and video as possible it is the closest thing you have of your baby when you leave the hospital. Makes you feel close to them

* - call the hospital as often as you like to check, calling 5x a night is perfectly acceptable and your never told not to call but also accept the reassurance from the staff really do care. * - Take in your own stuff to the hospital for your baby if it makes you feel closer is nice toy have stuff to smell at home too. * - always ask questions about your baby and ask to speak to doctors they are use to parents wanting to know. * -complain and compliment to hospital about staff, good nurses need the recognition and bad ones need the training to change their ways. As a nurse this is part and parcel of the job. But remember people are quick to complain not many people stop and compliment. * - ask to speak to social worker if you’re feeling down. Parents of prem babies are just as likely (if not more) to get PND so make sure you have an outlet to talk it really does help. *

-its normal to feel like the staff are the parent and your just a visitor. Empower yourself by knowing that your baby knows you better than you think they had ‘x’ months in you and that time was safe and warm and loved so any touch, voice, smell they have of you is a secure feeling. The staff changes each shift but the one thing that stays stable is you. * -Don’t be afraid to ask to hold or touch your baby. I was shocked the mum next to me in SCN didn’t want too annoy the staff and spent 3 days just waiting for someone to offer to her. Staff are busy and don’t realize that so by asking your just alerting them to the fact. * HOME - Coming home is the best thing ever BUT it can be hard. I found I resented the fact Noah was so unsettled like he didn’t want me he wanted the midwifes. This is a normal thought the baby is learning a new routine and probably for the first time has been attended too on demand I found what Noah was missing was bright lights and noise. We put up a night light in the bed room and a CD player with classical music played and he settled instantly. I found also that he loved being held and I loved holding him because I was getting back that time he was ill. * - Babies do bounce. (I learnt that when my DD rolled off the bed on morning and didn’t even wake up but rolled over on the carpet and continued to snore) But although your baby has been in cotton wool since birth they do like being handled and massaged. Noah loves baths (even more if one of us goes in too) yet in NICU and SCN he wasn’t ever bathed cause of the cords. -

* CLOTHES - I got lots of clothes from the hospital and copied the patterns- they also gave out knitting and sewing patterns too. * - Pumpkin patch have prem clothes and also teddy clothes which are about 7x0’s * - Target have a few 5x0s * - Lots of online stores have prem clothes like mummy’s little helper, early birds, moment by moment, premmie angels. Google it- but remembers you won’t need heaps babies grow. * - I found that people on EB had lots and also eBay.

Nappies - if you wan to use MCN try mommys touch or bubblebums (2.5kg min) * - bumgenius have covers for flats * - baby love newborn are smaller than huggies

Transport -The baba sling works fine with a prem I think most side slings would. * -Noah almost fell out of baby bjorn sling at 2kg. Think bub needs to be bigger for that one. * -Capsule worked well. Noah came home at 1800grams and didn’t look too small in it. Home -I got a baby hammock for Noah to sleep in and am a god send so much cuddlier for a baby and settles his reflux well * -Fisher price swing worked a treat too * -Toys with black and white on them apparently babies see and black and white very well good for stimulating eyes.

Feeding -Jamba breast feeding pillow by ABA is cheap small and perfect height * -I bought a medela breastfeeding pump is a double and halved the time for pumping. * -We had to use bottles for milk with added fortifier. I used cheap ones easy to use and freeze in and don’t waste heaps of money * -Squeeze bottles like the hospital have made bottle feeds and medication feeds easier * -Microwave sterilizer for the bits and pieces of pump and bottles. Only takes 10 minutes! * -Hospital gave me infacol cause of Noah’s reflux worked better than the infant’s friend * -Nose sucker thing for getting out boggas. ******************************

So that’s all I can think of at the moment but will add as I think of new things. Hope you and your baby are ok. Am happy to chat anytime

Support Quotes

"I thought I would have to teach my son about the world. It turns out I have to teach the world about my son. They see a boy who can not talk. I see a miracle who doesn't need words.”

-anonymous, from Dignity for Disability From Angela

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one day, one step at a time. one foot in front of the other and dont worry about what you can't change Kimberlee *

"And when you have passionate people determined to do something that has been done since the first mammals walked the Earth, there's not a lot you can do to stop them." (T.Shepard)

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If I ever get hold of this Peter dude, he has a lot to answer for!!!!

(J Lupton)

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Hospital Admisson Again

Tuesday 23rd June Sunday Noah was discharged from NED he had a good weight gain of 60grams over 3 days. Sunday night after Noah had some brown sugar and water to make him to poo he went bright blue and stopped breathing. At this time he also went limp and wouldn’t wake. After he started to breath again he stayed floppy and grey. I got ready to do CPR and rang SCBU they said to bring him in. I went to emergency where they admitted him for looking for a reason. He slowly came back too 80 minutes after the episode. He has bloods taken which showed a low grade infection and was given antibiotics. We were sent to the rose ward where they did oxygen sats and heart rate monitoring. His sats continued to fall over night and was seen by the doctor. They said they would do more tests the next day and continued to monitor and give O2 as needed. On Monday the HENS nurse came and out in the long term tube. The dietician came and changed him polyjules instead of the s26 fortifier. We immediately notices the different in Noah he was more calm. They organized for an EEG and ECG and heart ultrasound for the Tuesday. His sats stayed much better during the day. Tuesday we had the EEG and ECG and ultrasounds all results coming back fine so got rid off PA+ and epilepsy. Infant mental health came up and organized an appointment as well for development support. We were discharged late with the agreement we come back tomorrow for Neonate appointment to review all the results. I am honestly sick to death of being in and at the hospital, no one talks to each other and nothing happens fast. Am so happy to be home and away from all of thous horrid people who do horrid things to Noah. Am so over having a disabled baby now is not fair on him or us.

Brain Scan Results

Saturday 20th June Couldn’t bring myself to type yesterday. We got our results from the brain scan I had to ring to find out and they told me there waiting for the doctor to call me. so we waited and eventually the doctor called saying he has put our case to our consultant and he is on his way to radiology to find out more and when he does he will call. So knowing something is not right we waited again. The consultant called and let us know that the brain structure was fine so not related to PA+ but Noah has a cyst in the center of his brain which is attached to the left side. The cyst is small and from what they can see the fibers are not deep into the brain but the cyst will cause issues for Noah with his gross motor skills. There not sure how weak the right side will be but it also depends on the how the cyst grows the more fibers it sends out the less he will be able to use the right side. He also told us Noah has had a grade 1 brain bleed probably from being prem and would have been at birth. The area it has happened in is the learning center and would mean he will have some learning difficulties how much we will have to wait and see. He is too small to have an MRI as he needs to go under a GA so we have to wait till he is big enough like for his eyes. The doctor was very clear that he would like us to come in and see the scans and discuss with them what we can do, there is no treatment but they can help with development and monitoring his learning and development. So that was a shock to the system the cyst is not due to anything and once again bad luck. I think it is double bad luck as it affects the right side and that is his good eye :(

Weight, Eyes, Bloods, U/S

Thursday 18th June - Day 60 According to WCH Noah was term today, according to LMHS he is due the 28th so were sticking to that since the hell they put me thru not believing his conception date.

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We had our eye appointment Deppa recons the opaqueness is less, although I don’t think it makes his sight any better but makes it more appealing to look at. She did another test for glaucoma and came back fine so don’t need to go back for 6 weeks which is nice. She wanted him booked into surgey for the 17th of July but the neonates don’t agree so it is put off till he is 4kg which might be months away.

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After he had his appointment with the NED nurse. Weight was 2300grams which is up 40grams over 3 days. Not good so paed came in and discussed long term NG tube as we are refusing to give the bottle. They didn’t have any in stock so a short term one went in till they get one. That is kind of lucky because tonight it got blocked and I had to change it. They took blood for genetic testing and also discussed him being discharged from NED and going to the paed GI team but that wont happen till his next appointment in neonates. The paed organized for us a cardio appointment for another day which was good cause Aaron and I had been up all night with Noah screaming. He put his on losec as well to try and prevent the reflux and increased his iron as he is anemic. Next he sent us down to the ultrasound for a brain scan. The scan didn’t take long but were not given any results and were told we would be contacted if anything was wrong. Was a horrid feeling as usually with scans for the kids the sonographer has said “well I can’t comment but looks ok to me but the doctor will need to look and make a diagnosis.” So now we wait for thous results as well and the bloods.

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So glad it all over till next time and hopefully results will be here soon. And most of all hope Noah sleeps tonight because we are so exhausted it is killing us.

Cando4kids- Day 59

Wed 17th June Belinda from cando4kids came today. She had a look at Noah and did some exercises with him but he wouldn’t wake up so was a bit pointless. He didn’t track at all for her but she still left us with some toys to try with. She said to use black and white signs etc to stimulate the brain and she also left some flashy toys for him to look at. She gave us info on parents groups running on Friday afternoons which I really want to go too. She also gave us reference to VIP playgroup which runs Thursday morning. Unfortunately the appointment clinic is on Thursdays so I will go on the days I am not in hospital.

http://www.cando4kids.com.au/ Am really worried about tomorrow not sure what to expect and nervous at what they might find or what if they find nothing?

Afternoon Phone Call for Investigation

Monday afternoon 15th June Paed called me this afternoon after speaking to the community nurse about his low weight gain. He said he had spoken to the optomologist and they had decided to do some investigation into his low weight gain. On Thursday he is to have his eyes tested then go up stairs for a brain ultrasound then see the paed cardiologist for a heart check. Were also going to see the genetic specialist for some blood tests to make sure it is only the one chromosome affected and get a 100% diagnosis of PA. He also changed his feeds to 3x gavages feeds with the extras in the calories to try and boost his weight. He said he would also do a neonatal review on Thursday. Feeling pretty scared and crap now but glad there looking into it finally.

56 Days. 2260grams

Monday 15th June.- 56 days old

Noah had the nurse come today after not being here all weekend. Noah only put on 20grams = 2260gram, which is a tragic weight gain but it is a weight gain so I wont complaint to much. The nurse AGAIN suggested we take out the tube and I am AGAIN said no and said to read the doctors notes as says not to take it out. Why wont the nurses read the files? Noah is due for an eye exam again on Thursday I will ask some big questions then like why his weight gain is so slow and is it related. Also I will go see the paed so I can have a chat about his over weight gain and delayed development. They have his EDD for the 18th which is that day and he wont be anywhere near a normal baby size. Wednesday were having cando4kids come to do the early intervention development program for his eyes. I am really looking forward to some support and info, is very lonely not knowing what to do or think.

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Noah has been extremely unsettled lately is driving me nuts and I have no idea why. He had a poo and is not sick but he won’t stop crying. I hope he settles soon is sad to see him like this.

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Overall not sure on how I am coping. I have my breakdown last week and since then am back to ignoring the fact my whole life has changed and all my life plans are now altered. Am trying to just remain calm at least till I see Belinda (cando4kids)

7 Weeks Old

Tuesday 9th June Noah has been home for 3 weeks now and loving being around us all. He is having his eye drops 2x a week and we go back to see the specialist on the 18th although I have noticed no reaction with either eye except in the right to really bright lights. Noah has developed a rash on his body and we have used millions of creams and there not working so we saw the paed today. He said to leave it and keep it dry but is nothing to worry about. Noah's tube came out Sunday night and was left out and put on all suck feeds. He has done well on the breast and even got rid of the nipple shield on the right breast. His feeding has gone from 1 hour to half and hour draining well and settling 10x better. He has lost weight over the last week and was out back on the tube today to try and get him to put on weight. If he has no weight gain in the next few days he will need hospitalization to follow up growth retardation and if it is linked to the PA. I pushed for them to investigate now but they want to rule out weight loss just from being at home and less sleep time. So today he weighed 2.1kg So again we wait. But am feeling really good about the breastfeeding without the shield has really made me happy and meant I slept well for the first time in ages. I also got some paper work from the hosp to make a complaint on one of the nurses who made us buy $40 worth of things from the chemist which the doctor told us today NOT to use. She also told me to give up breastfeeding and go to formula as would be better for him; once again doctor was not impressed. So doctor and I formulated a plan which is not to change when a nurse comes without his approval. Feeling a lot more settled now too.

Photos by Katie

Kate took some wonderful pictures of Noah for us. Here he is in Aarons baseball mitt with his port power socks on. he is 2kg and 5 weeks old. How much he has grown!