Late update NYE

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31/12/09 Is NYE and I have been avoiding writing. I guess don’t want to accept the things that have happened. Noah had his brain scan again didn’t come back good, He has large areas of his brain which are not developing and dead. They have spread from grey areas of the last scan to large areas. Dr Haslam reacons will affect his motor development. I don’t want accept any of it. So will talk abou tit another time. Noah is now 5.1kg. He has been sick and lost 200grams lately but he will be put it back on just might take some time. He is rolling now and smiling all the time. He uses his hearing to find us and smiles away is very convincing if you don’t notice or he smiles at the noise someone made them moved. Looks like Noah has PPS (Peters Plus Syndrome) but we will see the gene doctor later this year. He is still too small too go under GA according to Haslam. He is due tho to transfer to Dr Conway instead  he is a paed and specializes in sick babies  Praying for a better year next year!!!

Endoscopic Dacryocystorhinostomy

25th October Noah has had his tube out for 1 week now. We did a trial on just breastfeeds and he lost 150Grams so Haslam said he needed bottle top ups. This meant we had hell with his colic. He still didn’t put on weight and today Haslam has said no tube and continue to try. I am mortified he wont just let me breastfeed and do polyjoule top ups. He wants me to push Noah to do something he cannot do. We went into the hospital today with Noah's left eye (the bad eye) being very swollen, red and watery. Deppa got us in straight away to test for glaucoma which luckily levels were still low. It came back Noah's tear duct is blocked. As such it isn’t not the tear duct but the drainage duct in his eye. They have said it isn’t developed properly and will need surgery when he can go under a general anesthetic. The procedure is called a endoscopic dacryocystorhinostomy (DCR) and consists of a tube being put down the side of the eye to drain into the nose and throat. it is not related to Peters but can be from an under developed eye. On the good news his white haze has decreased and his reaction to light is great. She was very happy he has full rotation of the eyes and follows light well. Still waiting for a time Noah is healthy enough for GA to have a good look and now the operation for his drainage. At the moment his left eye is very swollen with fluid and breaking down the skin on the lids from the fluid so we have more drops and Vaseline to put on his eye to keep it as healthy as possible. Noah's weight is currently 4290grams and he is 27 weeks old.

Smiling Boy 25 weeks old

Noah smiles all the time now and giggles when tickle him

My life consists of pumping, feeding and gavaging. Im so tired :?(

My special man 4.29 kg!!

Noah starts Solids

OCTOBER 18th 2009- 25 weeks old

Noah started solids today. 1 teaspoon of farex with boobie milk. He loves it and wanted more. He has enjoyed sucking on his rusk too. So proud of my boy! Lets hope this helps the weight gain and tube can come out soon.

Weight Graph

Noah hit 4kg this week. A big milestone for the little Wombat. Here is a graph I have done. The top 5 lines are the % for normal children ranging from 97% - 3%

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Noahs line are the green and orange ones. Green for his corrected age and Orange for his actual age. As you can see their both off the graph as massively underweight. Hoping for a huge weight gain soon.

oooooo

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For Noahs actual age of 5 and half months his weight is 4kg the average (50%) is 8kg

For Noahs Corrected age of 3 and half months (if he was born at term) he is 4kg and average (50%) is 7kg

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Chart from World Health Organisation Chart for weight for Babies 0-6months

As used by CYH and Government of Aust

Weight is going on!

18 September Sorry I have taken ages to write has been so busy around here. After last entry I called Haslam with the weights and he admitted Noah in that evening. Had a good and bad time, firstly Noah smiled, but not at me he smiled at the hospital lights. I was so over the moon he smiled but at the same time upset it was at the hospital. Made me feel like he wants to be there. But I forgot about that feeling fast as I was so over the moon he could see the light and responded. We were admitted in for 3 days and in that time I put my foot down constantly demanding tests and results every shift. Although I hate being in hospital it was a good and bad time. They worked out Noah's head size was not due to swelling of the brain but actually was in proper proportion to his age which is a good thing that it is not affected by his FTT. I saw the speech pathologist who worked out he had trouble sucking due to his weakness. While there we didn’t have Haslam as our paed and the one we had was useless and very old fashioned. To see if Noah was getting enough milk they would do a pre weigh then post weigh. This is the most inaccurate thing to do and the nurse stuffed up and subtracted it wrong so he was given an extra 100ml on the 50ml for me and ended up throwing up everywhere so then they said he had reflux. Was midnight when they told me to give up feeding cause I was starving him and I burst into tears and went out to call Aaron. But when on the phone it hit me to call ABA and get some proper advice. There were EXCELLENT and I cannot thank the councilor enough not only did she give advice and statistics to throw back in their face she gave me confidence I am doing the right thing. So the next morning I spoke to the paed with my new info. He decided with that he would FINALLY call Haslam (after I requested in 10x, little did I know they were scared of him) Haslam called me directly and asked what was going on and when he heard what they were doing and suggesting he came straight over and discharged us. The NG tube was put back in the dietician came up straight away to work out the formula to add the polyjoules and we were out of there. The best thing that happened though was in emergency I met a training doctor from India who was a paed neurologist who explained too me all about Noah's cyst and how it will affect him. He was worth his hour of chatting to me in gold!

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HOME SWEET HOME

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Noah has had the tube in for 18 days now and has put on 400grams! We are over the moon with his weight gain and have noticed he is developing a lot faster. He is babbling all the time now to any sound or lights or movement and smiling all the time. He is finally fitting into some cute outfits too and his sunnies fit. Today we saw cardiologist who re tested his heart he has grown back into his left ventricle and ECG was normal. We also saw Haslam who was happy with his weight gain and just wants to push physio for his development. He showed me his charts and explained Noah will be very short as a man and hopefully his he will grow into his head. His head circumference is in the 10% ile for his age and his length and weight is in the 50%ile for a newborn so he is really out of proportion. Will keep any eye on it and keep going weekly to get some more good news.

The Donkey Story

A Donkey Story One day a farmer's donkey fell down into a well. The jackass cried piteously for hours as the farmer tried to figure out what to do. Finally, he decided the animal was old, and the well needed to be covered up anyway; it just wasn't worth it to retrieve the donkey. He invited his neighbors to come over and help him. They each grabbed a shovel and began to shovel dirt into the well. At first, the donkey realized what was happening and cried horribly. Then, to everyone's amazement he quieted down. A few shovel loads later, the farmer finally looked down the well. He was astonished at what he saw. With each shovel of dirt that hit his back, the donkey was doing something amazing. He would shake it off and take a step up. As the farmer and his neighbors continued to shovel dirt on top of the animal, he would shake it off and take a step up. Pretty soon, everyone was amazed as the donkey stepped up over the edge of the well and happily trotted off! Life is going to shovel dirt on you, lots of dirt! The trick to getting along well is to shake it off and take a step up. Each of our troubles is a stepping stone. We can get out of the deepest wells just by not stopping, never giving up! Shake it off and take a step up. Remember the 5 simple rules to being happy: Free your heart from hatred - Forgive. Free your mind from worries - Most never happen. Live simply and appreciate what you have. Give more. Expect less

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NOW . . . enough of all this happy crap . . . The donkey later came back and bit the heck out of the farmer. The gashes from the bites became severely infected, and the farmer eventually died in extreme agony from septic shock. MORAL FROM TODAY'S LESSON: When you do something wrong and try to cover your ass, it always comes right back to bite you !!

God Choose Us.

The Special Mother by Erma Bombeck

* Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.

* This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? * Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

• * "Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity." "Forrest, Marjorie; daughter. Patron saint, Cecelia." "Rutledge, Carrie; twins. Patron saint, Matthew." Finally He passes a name to an angel and smiles, "Give her a handicapped child." The angel is curious. "Why this one God? She's so happy." "Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel." "But has she patience?" asks the angel. "I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it." "I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy." "But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!" "I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side". "And what about her Patron saint?" asks the angel, his pen poised in mid-air. God smiles, "A mirror will suffice."

Sisters Of Mine

SISTERS

Many of you I have never even met face to face, but I've searched youout every day. I've looked for you on the internet, on playgroundsand in grocery stores. I've become an expert at identifying you. Youare well worn. You are stronger than you ever wanted to be. Yourwords ring experience, experience you culled with your very heart andsoul. You are compassionate beyond the expectations of this world.You are my "sisters."

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Yes, you and I, my friend, are sisters in a sorority. A very elitesorority. We are special. Just like any other sorority, we werechosen to be members. Some of us were invited to join immediately,some not for months or even years. Some of us even tried to refusemembership, but to no avail

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We were initiated in neurologist's offices and NICU units, inobstetrician's offices, in emergency rooms, and during ultrasounds.We were initiated with somber telephone calls, consultations,evaluations, blood tests, x-rays, MRI films, and heart surgeries.

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All of us have one thing in common. One day things were fine. We werepregnant, or we had just given birth, or we were nursing our newborn,or we were playing with our toddler. Yes, one minute everything wasfine. Then, whether it happened in an instant, as it often does, orover the course of a few weeks or months, our entire lives changed.Something wasn't quite right. Then we found ourselves mothers ofchildren with special needs.

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We are united, we sisters, regardless of the diversity of ourchildren's special needs. Some of our children undergo chemotherapy.Some need respirators and ventilators. Some are unable to talk, someare unable to walk. Some eat through feeding tubes. Some live in adifferent world. We do not discriminate against those mothers whosechildren's needs are not as "special" as our child's. We have mutualrespect and empathy for all the women who walk in our shoes.

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We are knowledgeable. We have educated ourselves with whatevermaterials we could find. We know "the" specialists in the field.We know "the" neurologists, "the" hospitals, "the" wonderdrugs, "the" treatments. We know "the" tests that need to be done, weknow "the" degenerative and progressive diseases and we hold ourbreath while our children are tested for them. Without formaleducation, we could become board certified in neurology,endocrinology, and physiatry.

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We have taken on our insurance companies and school boards to getwhat our children need to survive, and to flourish. We have prevailedupon the State to include augmentative communication devices inspecial education classes and mainstream schools for our childrenwith cerebral palsy. We have labored to prove to insurance companiesthe medial necessity of gait trainers and other adaptive equipmentfor our children with spinal cord defects. We have suedmunicipalities to have our children properly classified so they couldreceive education and evaluation commensurate with their diagnosis.

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We have learned to deal with the rest of the world, even if thatmeans walking away from it. We have tolerated scorn in supermarketsduring "tantrums" and gritted our teeth while discipline wasadvocated by the person behind us on line. We have tolerated inanesuggestions and home remedies from well-meaning strangers. We havetolerated mothers of children without special needs complaining aboutchicken pox and ear infections. We have learned that many of ourclosest friends can't understand what it's like to be in oursorority, and don't even want to try.

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We have our own personal copies of Emily Perl Kingsley's "A Trip ToHolland" and Erma Bombeck's "The Special Mother." We keep them by ourbedside and read and reread them during our toughest hours.

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We have coped with holidays. We have found ways to get our physicallyhandicapped children to the neighbors' front doors on Halloween, andwe have found ways to help our deaf children form the words, "trickor treat." We have accepted that our children with sensorydysfunction will never wear velvet or lace on Christmas. We havepainted a canvas of lights and a blazing yule log with our words forour blind children. We have pureed turkey on Thanksgiving. We havebought white chocolate bunnies for Easter. And all the while, we havetried to create a festive atmosphere for the rest of our family.

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We've gotten up every morning since our journey began wondering howwe'd make it through another day, and gone to bed every evening notsure how we did it.

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We've mourned the fact that we never got to relax and sip red wine inItaly. We've mourned the fact that our trip to Holland has requiredmuch more baggage than we ever imagined when we first visited thetravel agent. And we've mourned because we left for the airportwithout most of the things we needed for the trip.

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But we, sisters, we keep the faith always. We never stop believing.Our love for our special children and our belief in all that theywill achieve in life knows no bounds. We dream of them scoringtouchdowns and extra points and home runs. We visualize them runningsprints and marathons. We dream of them planting vegetable seeds,riding horses and chopping down trees. We hear their angelic voicessinging Christmas carols. We see their palettes smeared withwatercolors, and their fingers flying over ivory keys in a concerthall. We are amazed at the grace of their pirouettes. We never, neverstop believing in all they will accomplish as they pass through thisworld.

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But in the meantime, my sisters, the most important thing we do, ishold tight to their little hands as together, we special mothers andour special children, reach for the stars.

By Maureen K. Higgins

Appoinments Galore

30th August This week have been at the hospital for 2 whole days. Optomology saw him and were really happy with his eyes. The whiteness over the eye has lessened. Although that doesn’t make his vision any better and the cornea is still affected it wont look so ugly as if the eye was all white. This then decreases the risk of us having to use any cosmetic appliances to cover the white eye. She was happy with this progress and reaction to light. He now has to wear his sun glasses at all time in the sun light. Best news is his glaucoma test came back really low so the pressure is good in his eyes so we don’t have to go back for 2 months! We also saw Prof Haslam Noah's weight has been poor and he lost 20grams this week. So the fat isn’t working as well as first hoped. We discussed what we could do and I asked if we could do natural ways before offering medications. He said ok and he said for the weekend to express 2x 80mls bottles and give them 2x a day and see if that helps with his feeding. So far he lost on Saturday and put on today so not sure it is going to be the key factor. He wants me to call Monday with weight and see what we do next. We also saw the physio from the development team seems Noah's big head is a an issue for all departments. He is behind in his development and still hasn’t smiled yet. She gave us some exercises to stop his joints from seizing up and to extend the ones which are not loose. Were due to see her regularly for his development and try and get the best we can. Need to call Haslam tomorrow with the weight of this weekends and he wont be happy so will see what he says to do next.

Thankyou Eliot

Today on Oprah I watched a video of a mum and dad who did a blog for their pregnancy and baby called Eliot who had tris 18. Made me think of my blog and what I have written over the past 12 months of pregnancy and Noah life. So many days I ask myself why me? How come I had to have the baby with the disability? Why us? What did I do wrong? Some days I cant handle it I see other parents out there with the newborns and so happy buying things, showing off their new bundles and I sit back and think, why me? why wont my baby grow? Why does he look different? I don’t go shopping anymore I cant stand people seeing Noah. I hate the comments and the looks. I hate everyone saying he is so small or how old is he. When I say 4 months I get weird smiles or people just walk off like they regret asking. I have started lying now and saying he is just born that way everyone goos and gahs over him and I don’t have to explain what’s wrong. Then I feel bad that I need to lie. What mum lies about their precious child so she doesn’t feel hurt? A bad mum! A good mum would be proud of her son and his achievements and want to show off the baby who defeats all the odds. I hope one day I will be that mum. My mum says to me every time I call with new bad news ‘poor Noah’ I bite her head off this week saying NO POOR ME! He doesn’t know he is different he still gets love and cuddles and milk and milk and cuddles and more milk. He thinks life is pretty grand. I am the one who grieves for the baby I thought I was going to have. The 4th baby in the family, which translates to the one who gets tag along for the rest. Yet Noah doesn’t fit that description the whole family revolves around Noah and his needs. But today’s episode made me think of how selfish I have been every day is so special with Noah and I should be so proud of how far he has come, he has fought his whole life for each day to cuddle and love us, he doesn’t care about doctors or statics he just cares about love. I am so proud of him for tropping on he is my star. most of all I realized how proud I am of all the family for loving Noah and accepting him, none of the kids realize the extent of his limitations or needs. They don’t care, they don’t care he takes up all my time or that his needs are so important they just love him as their brother. How could I ask for better siblings for Noah than that? I am going to write a letter to all the kids and Noah and put it away for them. Thanking them for the love of the family and for helping us so much with Noah. When their older I want them to see the pics of how hard life has been for us all and know I was so proud even then of them. I want Noah to look back on his life and feel loved and special and proud of himself for fighting every day, so hard just to be with us. Eyes full of tears now. BBL to continue.

WOMBATS

To keep us positive we have decided to raise money for the organization that supports Noah's disability. Cando4kids (Townsend House Inc.) is South Australia’s oldest registered charity and is committed to creating a brighter future for disadvantaged kids. The mission to help change the lives of SA children who are Deaf and Blind and to help them reach their full potential. All services are provided free of charge and as the principle provider of charitable services to Deaf and Blind kids. And the wonderful organization were benefiting http://cando4kids.com.au/ * Every year they hold an annual fundraiser called the Amazing corporate race. The CanDo Amazing Race Corporate Challenge is a two day race in and around South Australia where 35 businesses will compete using a combination of brains and brawn to win the title as the ultimate team!

* So Geoff has sponsored the team and with Aaron and his 2 uncles they will compete to win the title as the best team. We need to raise $1500 to participate and $3000 so they don’t have to sleep in a tent. So far it is going really well and were getting lots of support. Check out the website to see how the Wombats are going. (wombats after Noah of course)

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www.theamazingrace.net.au/corporate

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Check up out on Facebook too

http://www.facebook.com/home.php?ref=home#/group.php?gid=135598381128&ref=ts

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This team is comprised of 4 men all related Little Noah. Highland Accounting is our corporate sponsor who is owned by Noah's grandfather and a team member. The team also comprises of his father, and 2 Great Uncles. Noah was diagnosed with Peters Anomaly and has been part of Cando4kids since he was born. This organization has helped Noah and all our family with great support and information not just for his vision impairment but also his other related illness. We decided to participate in Great Race Corporate Challenge to help raise funds and awareness for Cando4kids. We hope to gain from this some ‘warm and fuzzys’ and the knowledge were helping kids like Noah with vision impairment and hearing impairments and their families. We know with this we have fun and bond all knowing were doing it for our little wombat. *

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THE 2009 ANNUAL CHARITY EVENT

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The CanDo Amazing Race Corporate Challenge is a two day race in and around South Australia where 35 businesses will compete using a combination of brains and brawn to win the title as the ultimate team!

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YOU CAN HELP *

4 Strapping young men have decided to race to raise money and awareness for the organization that support their ‘little Noah’ with his vision impairment.

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The Father, The Grandfather and The 2 Uncles

have decided to join forces to win this race.

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THEY ARE THE

Need to put on weight NOW

August 14th Has been a few weeks since my last entry so much to catch up on. Firstly was my birthday on the 11th so nice to have all 4 kids in the house for my special day. The kids decorated a lovely cake for me and sang happy birthday while I was in the bath. Since last entry my back and hip has been very painful I have had chiro to help and it has helped a bit but still in lots of pain which is stopping me doing a real lot. * Noah hit 3kg this week which is a real special time for us. HE hasn’t had the tube put back in and breast feeding really well. We had an appointment on Friday with Haslam to discuss Noah's weight issues. According to his chart his head is normal size for his age, length is slightly small and weight is massively small. Haslam described Noah as the same as a 3rd world country baby. That pissed me off! He had only put on 200grams in 4 weeks and was extremely poor gain. The doctor stated that Noah does have Peter Anomaly and failure to thrive is part of the disability. He put him on the some special oil to help him put on weight. Were on a one week trail with a follow up next week. So far no increase this week with his weight. He also said he was concerned about Noah size of his head. Although it was normal for his corrected age is wasn’t in proportion so the head scan will be being put forward to make sure the cyst is not growing or causing swelling to the brain. Although he wants to wait as long as possible for the best comparison it will be moved forward. He stated Noah was going to small no matter what as past of PA. His limbs are short for his height and they weight with the oil or fortifiers then we will need growth hormones and steroids. Overall hoping Noah has a good weight gain this week will update after Noah appointment picked up the scans when I was pregnant. We looked on the PA website and average height for a man was just 4ft 7. and studies showed that the average life expectancy age was 24. So now we know Noah is likely to have Peters Plus were feelings pretty down. If Noah doesn’t put on Friday. He has his eyes needing testing this week too.

3kg Club!!

Noah has hit 3kg now. Yesterdays weight was 3000grams!! was a 40gram increase over 3 days. Is Aaron and my 1st Wedding Anniversary this week. So this weekend we went to Clare for Friday and Saturday Night. We stayed at the Country Club with the spa room. On Saturday we went to 6 different wineries and got 7 bottles of stunning red wines. I learnt so much about wine and wine tasting. We went to Seven Hill Neagle rock Annie lane Kilakloon Penna Lane Jeanneret next time will skip Kilakloon and Jeanneret they had expensive YUK wines. Is my birthday coming too will be 29 on the 11th. Got not much planned as the weekend away was our fun.

NOAH IN THE BATH

No tube!! 13 weeks old - 3 corrected

July 24th Noah has had his tube out for 1 week now and has put on 100 grams over the week so he is doing well. The first few days he lost weight but the last few days he has put on heaps. I spoke to the Paed again and is he is happy with Noah's gains and wants to see now he is of decent wait if he picks up his gains to more a normal rate. The head scan was not so good they hope it is a benign cyst but wont know till last this year when he has another scan to see if it grows. Heart seems ok will review that next month and hopefully the rhythm is back to normal. Today he is 2920grams (6lb 4oz) he is almost the same weight Keeley was at birth. He is growing out of his 5x0 clothes and starting to fill the 0000 I think the cloth nappy makes him bigger but is so nice he can wear normal clothes and I can start to buy cute stuff again.

Neonates Professor

16th July Yesterday was our first appointment back with Neonates and finding out what the hell is going on. Prof Haslam was in cause out normal doctor was on holidays. He was deeply apologetic that Noah had been put on Rose Ward and said to call him next time anything went wrong because they were not informed and he is coordinating his care. He said that the nursery is still Noah's place to go and don’t let the tell us otherwise. He also couldn’t see any results in Noah's file from the ECG he tried to contact Dr Kelly but he was in surgery so he said he will get to the bottom of that before we next go in. He was very mad at the staff and they way we have been neglected for so long. He also read the report on the cyst and said he needed to see the results himself as he has had much more experience. He said no matter what the outcome doesn’t change because they cannot treat it or remove it so probably re do the test in 3 months and watch Noah's right side motor skills to see if there is any issue. But there is nothing they can do. He was happy with Deppas care for the eyes. He suggested we take the tube out of Noah nose and try breast feeding him 3 hourly and see what Noah can do. So we have stopped the polyjules and gavages. I am so tired from feeding every 3 hours on the dot and Noah is so tired also cause I am forcing him to feed and he is tired from being woken up and tired from working so hard. But so far he is doing well and getting milk in each time. I am very proud of him for trying so hard and proud of me for tolerating 3 hourly feeds when they go for nearly an hour each feed it makes sleep impossible. He was also put on more vitamins and iron for Vit D deficient and anemia. Am going back tomorrow to see Professor Haslam for a review and get the results from the head and heart. Will also have a weigh and get back the forms for disability pension for Noah too. Will be interesting to see what happens we are crossing our fingers the tube stays out and we can progress with just breast milk with no additives. Am feeling very positive.

More Results- Cardiology

More Results

July 10th – Thursday

I rang the cardio department yesterday to cancel Noah's appointment which was sent out presuming, I said it was mistake and the referral had been met when we were an in patient so we didn’t need it. They said they would get the specialist to call us to confirm we didn’t need the appointment. He didn’t call and today I rang at lunch time to confirm I wanted to cancel the appointment once again they said they couldn’t and Dr Kelly would call soon. In the afternoon the cardiologist called to tell us the results from the ultrasound (ECHO) seemed ok but because Noah is so small and was crying the film was not 100% clear so some other time they would re-do it. He couldn’t see any abnormalities but it is common it needs redoing it if the child is upset as it makes it hard to photograph the heart. I was open to that idea and tried to say we would keep the appointment and tried to say good bye. He stopped me to tell me that the ECG had not come back normal at all and was not within normal limits. He asked us to come in and discuss and re test the ECG after Noah is 4kg so they can get a better reading. He said the ECG showed signs of weakness which can lead to arrhythmia, seizures, blue episodes etc. We need another ECG and tests done but the cardiologist and I agreed that the head paed would make that decision when it should be done or to leave it till the 7th September. He told us the symptoms to look out for and any suspicions call and ambulance straight away. He was very reluctant to leave it so long but since Noah has other issues and the next lots of tests can be invasive he will speak to the paed. I have decided to not push the heart too much and with hold vaccinations for longer. The cardiologist said we didn’t want to stress Noah's heart just in case so I am now more cautious of what he has to go thru. I expect when we go next week to see the head paed we will get an idea of what there priorities are and start testing.

National Prem Day

NATIONAL PREMMIE DAY

31st July 2009

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Saying thanks for our tiny babies and the people who look after them

Weight Graph

Noah has done well in the last few weeks we bought our own scales to save us trips to the hospital for his 2/7 weights got a real bargin off eBay. Below is the graph we use to plot on his weight. The pink line is the minimun amount of weight he is suppose to put on per day. So his starting weight was 1450grams and today should be 4180grams (min 30 grams a day is healthy range) His actual weight is the blue line which is 2685grams (1495 difference) he is still classed as failure to thrive. His NG tube is still in and he still requires 3x gavage feeds with extra calories in it.

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Today was the first time since we have been home that he has put on more than the minimun amount. So proud of him. Will be seeing the neonates team on the 15th for a review and eyes done at the end of July. Physio in 8 weeks and cardio on the 7th Sept. Am hoping for the gavage to come out soon.

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!

Cloth Nappy Time and Milestones in Hospital

MILESTONES

Had colostrum- achieved 21/4/09 (birthday)

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1st Cuddle- achieved 23/4/09 (2 days)

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Off CPAP- achieved 25/4/09 (4 days- 1210grams)

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OFF Oxyflow- achieved 27/4/09 (6 days- 1260gr)

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OFF TPN- achieved 27/4/09 (6 days- 1260g)

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Off Lipids- achieved 27/4/09 (6 days- 1260g)

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Out of NICU- achieved 29/4/09 (8 days- 1300grams)

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Hit birth weight- achieved 8/5/09 (17days- 14450g)

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Go into an open cot- achieved 7/5/09 (16days- 1445g)

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Suck on the breast x1- achieved 9/5/09 (18 days- 1490g)

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1.5kg- achieved 10/5/09 (19 days- 1525g)

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Off NaCl - achieved 11/5/09 (20 days- 1545g)

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1.6kg- achieved 14/5/09 (23 days- 1615g)

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35 weeks corrected- achieved 15/5/09 (24 days-1650g)

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Off NaHO3- achieved 15/5/09 (24 days-1650g)

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Off Sats monitor- achieved 16/5/09 (25 days- 1695g)

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1.7kg- achieved 17/5/09 (26days- 1700g)

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3 hour feeds- achieved 17/5/09 (26 days - 1700g)

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Move to SCBU 2- achieved 17/5/09 (26 days - 1700g)

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Caffeine ceased- achieved 18/5/09 (27 days- 1740g)

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40 mls per feed- achieved 18/5/09 (27 days- 1740g)

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Off NaCl again- achieved 19/5/09 (28days-1760g)

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Feed breast x2 per day-achieved 19/5/09 (28days-1760g)

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Off heart rate monitor 21/5/09 (30day)

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Off resps monitor 21/5/09 (30days)

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1.8kg 22/5/09 (31days 1810g)

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50 ml per feed 22/5/09 (31days 1810g)

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36 weeks corrected 22/5/09 (31days 1810g)

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3x BF 24/5/09 (33days 1860g)

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1.9kg 24/5/09 (1900g)

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Go Home 25/5/09 (34 days 1940g)

First Eye Appointment

28th May 2009

Well Noah had his first outing today bummer it was back to the hospital. We went to see the eye doctor but ended up waiting for ages so went upstairs first for his weight. The little man put on 90grams. So was a great weight gain finally hit 2kg. After we headed back to see the doctor. She looked at his left eye and said the antibiotics hadn’t worked and it was definably PA. She explained due to him being prem he can’t have further testing till he is a normal weight. So when he is older we will have a general and have look in both eyes and see if the right eye is 100% good or has any issues. She explained the possibility was low but she was optimistic. She also went through the dangers with PA such as glaucoma and cataracts and he needed to be checked regularly. She also told us to look out for a swollen eye and if any concerns come straight in too see someone and bypass emergency as is needed attention straight away. She gave us some dilators to try and get the left eye to be sensitive to light perifably so it will not become too lazy. She also explained there is a specialist at another hospital who is researching this condition and we would need to see him for genetic counseling and to get the others kids checked. she then checked us, Aaron came back fine but she thinks I might have a very very mild case and need to find out when we go see him cause then I am in danger of the complications as well just unfortunate Noah got it so bad.

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I feel numb still and in disbelieve as much I was prepared with stuff I had read I had kind of twisted my mind into thinking it would be ok and she would say don’t come back is nothing.

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My other 2 kids are from my previous marriage so telling there father is not going to be fun and my DSD mother is going to freak. But we will cross that bridge later as we have to wait for Noah to have his general check first.

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I didn’t write a list (well I did but I didn’t take it on principal of denial) funnily I remembered everything to ask anyway except about the PHI.

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She answered lots of them by saying "cosmetically we can fix that" so that was her main answer and "yes this is serious". he does have a chance of PA plus which is a muscoskeltal issue associated but since he was in NICU and SCBU for so long and never had any issues she doubts it will be a problem.

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So now we wait!!!

Day 1 of Noah being home

26th May 2009 - Day 1 of Noah being home has been interesting he is up all night with stomach pains and had some sugar and water and finally had a poo after that he settled well. He managed to have a 4 hour sleep last night but I am so tired from being on demand all the time and most of all breastfeeding I forgot how exhausting that is. The nurse came today he lost weight over night which is not good for his cause of being home. He is wanting breast too much so were upping his gavages feeds so he can rest more. I have loved him being home as were so much more comfortable for us and so nice to not have to go out for a cuddle.

Peter Anomoly Diagnosis

Peters anomaly: Anterior Chamber Cleavage syndrome

Peters anomaly was first described in 1906 by a German Ophthalmologist, Dr Alfred Peters. The anomaly affects the eyes of people of both genders and from all ethnic groups. Peters anomaly is a developmental error of early pregnancy (10-16 weeks). Normally, the cornea, which is the transparent 'window' of the eye, focuses light through the lens onto the retina (a light sensitive film at the back of the eye). Signals are then sent by the optic nerve to the brain for interpretation. The cornea, lens, retina and optic nerve need to work perfectly in harmony for clear vision. In Peters anomaly the central part of the cornea is hazy and white. This may affect one or both eyes. The corneal opacity is the obvious feature that Dr Peters described but this is now known to be part of a spectrum of abnormal development of the front of the eye. The eye may be abnormal in other ways including the drainage angle of the eye which may be underdeveloped so there is a risk of glaucoma and the lens of the eye may be cloudy. The fellow eye may have a milder developmental anomaly or be more severely affected where only a rudimentary small eye has developed.

* What are the symptoms?

A number of features will lead to the actual way the child is affected: If the centre area of the cornea is white or cloudy, the cornea will not allow the eye to obtain a clear picture of the world. Light enters the eye but, if both eyes are affected, the child will not be able to clearly see what an object is. They will just be aware that something is there and aware of colours. Peters anomaly can be associated with other eye problems that contribute further to reduced vision including glaucoma, nystagmus, microphthalmia, cataracts and retinal detachment. As the cloudy area usually affects the centre of the cornea, then even if the cornea is later grafted with a clear donor cornea the eye will be amblyopic (lazy eye). The area of the developing infant brain that responds to signals from the eyes needs to be given information of good quality about the world very early in life for normal eyesight to develop. In one study, sixty per cent individuals with Peters anomaly of the eye had abnormalities of other organs, in particular the heart or central nervous system. Twenty per cent of cases had developmental delay. Some of the anomalies associated with Peters anomaly occur in a particular pattern and form a recognisable syndrome such as Peters Plus syndrome.

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How is it diagnosed?

A diagnosis of Peters anomaly will be made by examination by an ophthalmologist. Usually, the eye abnormality is detected soon after birth but there may be a delay before the correct diagnosis is made. The clouding of the front of the eye may spontaneously improve over the first few months but it is most important that the child is examined as soon as possible by an ophthalmologist. It is very rare for an ophthalmologist to require a baby to have a general anaesthetic to make a diagnosis but occasionally this may be necessary to make a thorough examination. It is difficult for both parents and specialists to predict how well the child will see. This will become more apparent as the child develops and interacts with their environment.

Italy vs Holland

MY INSPIRATION

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Welcome Home Noah

Monday 25th May We have had a rocky few days. On Thursday I went in to feed Noah and spoke to Chad about his eye he is immediately organized for the optometrist to come down. Funny thing I had asked the nurse in the morning and she had said “I was seeing things” I asked when the optometrist was coming and the nurse got angry and said not today as she was too busy. So I left at midday and come home for Rachel’s 6th birthday. I got a phone call about 3pm from the doctor saying they had been and didn’t know what the cloudy part of his left eye was and the specialist would be down Friday and I needed to be there at 9am. In my mind I was not worried thought it might be a cataract or something. Friday morning I was there at 9am for the specialist. She came and looked at Noah and first. The procedure was horrid they put an anesthetic in his eye ball then force the eye open with metal forceps she calmly told me that Noah had a condition for his eyes where they had not developed properly and he would have no use of his left eye and his right eye was likely to be affected as well but not as severe. I was shocked I felt like I was going to pass out and I ran out to sit down. I came back after sitting with a friend and trying to acknowledge what she had said. She explained he would need ongoing tests for glaucoma but at the moment all was ok. She also stated it could be an infections but the chances were very very low but we would try some anti biotics anyway and I was too see her again in 1 week. The diagnosis is Peter Anomaly I rang Aaron straight away and told him to come in. the rest of the day is blur I don’t know what to think or feel. We were still booked for the bub and mum unit for the weekend. Friday night we went to Aarons party at his mums was nice to relax a bit but I felt so bad for my little boy.

The unit was nice and cozy was lovely look after Noah ourselves. We had bitch of a nurse for the 2 days who made it very clear Noah is not ready to go home. She made sure we felt horrid and when Noah wouldn’t settle in the middle of the night I called the nurse to come in and wept about the nurses comments. We made it thru the weekend with the knowledge when we get home all will be much better. He did well and put on 100grams in the 2 nights. So we arrived home today very tired as Noah was very unsettled over night. So far he has slept since we have been home and feed well with breast then gavage feed. I will explain later what we do etc at the moment am trying to get organized and read up on his diagnosis

Day 29

Wednesday 20th May Noah put on 20grams today = 1790grams. He was settled over night and had a bottle with success. I was running around stupid today trying to organize everything for Noah coming home and Aaron and Rachel’s birthday. I didn’t get into the hospital till the 2pm and had to take Jake with me. Jake was very well behaved and let me try and feed but by the time I got there Noah was screaming and the nurse said not to feed him at 2 which was not for half an hour so by the time I could get him onto the breast he was buggered and didn’t suck well and I ended up just cuddling him cause he was so upset. I just cant wait to go in on Saturday and cuddle him as much as I want and feed him when I want. Only 5 day till he comes home!

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* 34weeks + 3 corrected by 28/6/09

35+5 corrected according to Hosp 19/6/09

Day 28- 6 days to go

Tuesday 19th May Noah put on 20grams = 1760grams that is 3.8lb He had 2 great breastfeeds today with 10ml top ups. Last night he had a bottle and had 35mls so did really well. Spoke to nurse today were going to parenting unit on Saturday instead of Monday so he can come home Monday. We have had to cancel Rachel’s birthday party till further notice but she is so excited he is coming home and will be at her party she wants it later. I am so tired I just want to sleep I feel so relived he is coming home but still so exhausted with so much to do. Rachel knitted Noah a hat! Check it out!!!

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34weeks + 2 corrected by 28/6/09

35+4 corrected according to Hosp 19/6/09

Day 26- Home Time Booked

Monday 18th May Noah put on 40 grams last night= 1740grams. I went in for his morning feed and he had done well over night. Chad put his feeds up to 40ml per 3 hours and still breast feeding 2x a day with top ups. We also spoke about NED and I am going in Monday for 2 days of education before he can come home Wednesday next week. I am so excited as much as it may not happen is so nice it could. He has had his caffeine ceased also and blood tests for his kidneys again. SO now were trying to get the house ready quickly so much to buy and get ready and so much to do before he comes home.

I bought some fenugreek and fennel today to try and increase my milk supply am excited now he might be coming home and BFing. He fed for 10 minutes each side today so I felt much better about going in with him awake.

34weeks + 1 corrected by 28/6/09

35+3 corrected according to Hosp 19/6/09

Please BF! 23 & 24

Saturday 16th May Noah is still grading over to 3 hour feeds but he is doing well. He put on 45 grams = 1695grams. I tried to BF him abut he just wouldn’t take so I waited another hour and he tried but no success he is just hurting my nipples. Feels like he will never get it.

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33weeks+6 corrected by 28/6/09

35+1 corrected according to Hosp 19/6/09

Sunday 17th May

rang this morning and Noah put on 5grams = 1700grams am so happy hit another milestone. He successfully finaihed his grading and now on 3 hour feeds nurse called to say he is desperate for a BF so going in a 11. I hoping better luck that every other day. The nurse gave me a nipple shield today made feeding a lot easier for Noah. He is moving today to SCBU 2 so last room before home. He looked wonderful today in his own wraps and blankets too. Going to have to start going in 2x a day now to get him feeding better.

* 34 weeks corrected by 28/6/09

35+2 corrected according to Hosp 19/6/09