Happy New Year!

As I lay here breathing in the baby goodness, the sweet baby Lily smell, I wouldn’t change a thing. She is the coolest thing ever; brave, cute, cheeky, loud, stubborn, adorable!

2015 has brought us joy and pain. I will be glad that it is over, but appreciative for what it has brought us; Lily of course taking the spotlight. After a week at home with the little munchkin, she has thrived and flourished, we have had smiles, wiggles and vomit, lots of vomit. It’s so nice to get to know her, in our own home, with our own things, in our own space.

We’ve been back to the hospital for our review and check up with the NICU doctors, passed with flying colours, and had visits at home from nurses to check up on Lily.

Happy New Year everybody, tonight I celebrate family, with a glass of Moet, chippies and hope for many good things to come in 2016. 

 

A Christmas Miracle

It has been a long and at times very challenging, heart wrenching, rollercoaster 171 days for Mr T, Lily and I…Lily has worked so very hard to get where she is today and decided all those months ago on a Saturday night in July that she was going to hang around. She is yet to discover how strong she has been, the will she has summoned and the courage she has within.

With hearts full of joy and bursting with excitement, we are very excited to say that tomorrow we are bringing our baby girl home.

As we leave the hospital tomorrow, Lily for the first time will feel fresh air on her face, wind in her fluffy hair and sunshine on her toes. So many firsts to experience, but the best one perhaps, is that we will have our family together, at home, for Christmas.

As with any newborn, leaving the hospital is only the beginning; there is still lots to be done, appointments to attend, medications to administer, feeds to pump and maybe some sleep too.

All those things aside, I just can’t wait for the simple pleasure of enjoying an entire day at home, with Mr T and Lily.

We’re coming to get you Lily! 

Highs & Lows

I wrote this two weeks ago in a bit of a low moment, since which the little munchkin has perked up and is now ready for a procedure tomorrow to have a P.E.G put in, so that we can feed her easily and safely at home. It will mean she will have one less tube in her face, but a tube coming out of her tummy instead. The tube goes straight into her tummy, and we will pump her feeds in through the tube, while we continue to work on her bottle feeds and practice sucking. She’s always very excited to try her bottle, but just hasn’t learnt yet how to feed and suck effectively. It was a tough decision, but the best one in the end for all three of us, to ensure feeding can continue to occur without stress and be an enjoyable experience. She will have a light anesthetic and the procedure will be performed by the gastroenterologist.

Anyway…I decided to post my thoughts from two weeks ago anyhow, as it’s a good reminder that all yucky things do pass, they are never horrible forever. As hard as it is to trust her sometimes, Lily’s got it all covered. She is after all continuing to grow, 5.1kg and nearly 8 weeks corrected….

…The last couple of weeks have been horrible, no sugar coating required…they have completely sucked! 23 weeks, nearly 160 days in a hospital and battling horrendous traffic everyday will eventually take its toll on a person. Totally over it. Lily has caught a cold in the hospital, which for you and I is bad enough, but for Lily is even harder to kick with her fragile lungs. She’s snotty and grizzly, having trouble with her feeds, vomiting and desatting. She created her own code blue alert last Thursday while waiting for a nuclear thyroid scan downstairs, when her portable oxygen ran out, she vomited and stopped breathing. It sounds very dramatic, but it’s not even a stretch of the truth. I have never really felt like I was going to lose a loved one before, besides the time my Mum was sick in 2009, but Lily has thrown me over the edge so many times…that unnerving feeling where your legs crumple beneath you, unable to hold you up, you slide down against the wall in a snivelling mess, until the nurse comes to tell you everything is ok. You get back up and walk back in, and sit next to the baby that you thought you were just about to lose…again.  There are so many things I have seen in the hospital that I can’t unsee: I have seen my own child be saved by amazing doctors and nurses on numerous occasions…as her face and lips turn blue, her body becomes limp and she struggles for air…..I have seen babies crying as they are weaned off morphine because they have been born addicted to drugs, I have been surrounded angel babies that never get to go home with their Mum and Dad, I have seen despair and distraught cross the faces of new parents as they become familiar with the NICU, I have seen fantastic nurses and not so good nurses, but most of all despite all I have seen and can’t unsee I have got to know one precious little human, very, very well. As I sit with her each day and observe her keenly, waiting for signs of progress, a chance of going home, she makes all the horrible things ok. That smile, that giggle, those bright eyes, keep me going back each day.

…Tomorrow is a big day for everybody, one that will bring us the closest to home so far.  I’m a bit nervous but hopeful that it all goes to plan. As always Lily will decide what will be, and we will be there for her. Christmas still isn't out of the question, she's got us on the edge of our seats!

A blog by Mr T

Mr T has written a blog post for me this week. Mr T is a dashingly handsome man and throughout our travels with Lily has grown even closer to my heart. While he has called it ‘manning up’, Mr T has always has this under wraps already….he listens, cares, and just knows what to do when confronted by his teary wife…on the phone….before school….at the hospital. Manning up is the ultimate version of love and support, it’s just what Mr T does, he rocks at it.

MAN UP!!!

So when Robyn asked me to write a blog post for her I thought to myself where do I begin. She is a beautiful writer and is so eloquently describing our journey as a new family. For my post I thought I would tackle the topic of "manning up" because that is what this our circumstances has required me to do.

The last 20 weeks have been a blur. We have gone from being pregnant at 20 weeks, to bed rest for four weeks, to the hospital for one week, in labour for one day and now parents for 20 weeks. Do I feel like a parent yet? Do I feel like a dad? It's a relief to finally say yes I am on my way. We spend years thinking about the possibility of becoming parents one day and the vision of what is considered as "normal". So what about when what happens is not considered the norm. How does that make you feel? Well as i write this bedside at Lily's crib I can honestly say it is the most beautiful and amazing feeling in the world. But reaching this feeling has produced different emotions along the way such as sadness, frustration, excitement, anger, angst and fear.

When we first received the news that our pregnancy was not unravelling the way we wanted, i was presented with the very real task, as man of the house, i had to "man up" so to speak and gather strength from every part of my being in order to move us forward solidly and safely. Does this mean I ignored my emotions along the way? Not at all, but it's hard to explain. It is quite a traditional idea to say "men shouldn't cry, or share their feelings". I don't agree, and I have certainly shed a tear and spoken about my feelings throughout the last 23 weeks. It is when I have been away from Robyn however that my mind has allowed me to let my guard down and share a tear with a friend or colleague. When back at Robyn's side it's like my "man brain" stooped in 1000s of years of evolution said to my physical being, "man up, suck it up, don't complain, do whatever you can, listen, love and read Robyn's physical and emotional cues really well because that's what she and the situation needs right now".

I like to consider myself a sensitive new age guy. I do housework and cooking and can have an honest conversation about my feelings. I have always been pretty well grounded on a personal level. But prior to our recent circumstances I had never been in a situation where I had to be so consistently solid, strong and stable for someone else for such a length of time while going through such an emotional roller coaster myself. For Robyn this has been a ride that has been both emotional and physical. We have been faced with unpredictable, inconsistent and unreliable situations everyday. I have had to "man up" on a daily basis and ensure that she could always find strength and stability in me. This situation has given me an opportunity to grow as her husband, build on all the strengths of our relationship and begin my role as Lily's daddy. I don't feel I can take full credit for my ability to "man up". I had a wonderful teacher in my father who taught me over the last 34 years what it means to be a great father and husband. Thanks PV!!! (Aka: Papa Vicoosh)

I'll finish this blog with a message for husbands:

If faced with the same or similar situation you would or already have done the same thing. If your partner, family or friend needs you, let your highly evolved man brain do its thing and be there for them. Don't complain. Stay in control of your emotions. Husbands, be the man your wife needs you to be. You know her best so do what you need to do. Realize that changing her sadness to happiness is probably an unrealistic expectation right now. You can still comfort her, listen to her, care for her, make her feel safe and distract her if possible. This in time will lead back to happiness when the storm has passed. They do say "happy wife, happy life". If all this is too much to remember then men I hope you have taken away this blog's key message to...............MAN UP!!!!!

A light at the end of the tunnel

Well. I never thought that I would be holding a baby that is over 4kg. She has outgrown all her teeny tiny clothes and is teetering dangerously on the edge of popping out of her 0000 before she’s even worn them all. Little Lily is not little anymore, she is a big chubby bubby. She is now three weeks corrected or 43 weeks…18 weeks in the hospital, nearly 5 months, 126 days…

I also never thought that I would be starting to get excited about her coming home! In the last week doctors and nurses have started to mention that word…home. Lily is very stable (usually) with her oxygen now, and will be able to come home with a small amount for as long as she needs. (This could be anything from 3-6 months or longer) We have been given a timeline of 2-4 weeks, so are crossing everything that Lily the brave can pull this off before Christmas.  

We need to establish feeding and figure out how to deal with her terrible reflux. It’s the only thing left holding her back. She is still tube fed, but has such chronic reflux that she holds her breath to push it back up or vomit and then de-saturates her oxygen levels. Her food is already thickened, given to her very slowly and she also two doses of a tummy settling medicine per day. We will recommence some attempts suck feeds this week to see if she is interested, but I don’t blame her for not being very keen, considering that every three hours her tube feed is such a painful ordeal. Her 22q deletion poses extra feeding problems too, making swallowing difficult, so it is very likely she will come home with a nasal tube, or we may have a stomach peg inserted. That way we can focus on feeding in the home environment where we can all be a little more relaxed. These tiny hills for Mr T and I are nothing compared to the mountains Lily has already climbed! 

Mr T and I have been putting our mummy and daddy hats on this week and found a few things that help her through. Lots of pats on the back and an upright cuddle seem to do the trick.

I have learnt over the last 18 weeks that everybody’s journey is relative in Nicu/special care. Mr T and I look at the parents of babies born only a few weeks early with very small difficulties, and think…if you only knew. It equally applies to us too though….we are by no means the longest stayers, and if only we knew… there is always someone out there who has had a tougher time than you.

Over the last week; the entire 18weeks of emotion erupted one Thursday before school, so Mr T came to the hospital with me that day, to hold my hand and prop me up. Not only is it tiring being in the NICU with your own baby, but you are also constantly surrounded by the fear and worry of other parents and babies. Every time the emergency alarm rings out loud in the NICU you are grateful it’s not your baby this time, but so sad for another family that has to endure a terrifying life or death situation for their own little bubs. It is so very sad.

Mr T and I are finally feeling like a real Mum and Dad with the little smiles she gives us when we greet her, the way she snuggles in tight on your shoulder and falls asleep after a feed and the way she is comforted by our voices, attention, cuddles and love. We can’t wait to have her with us all the time, where we can give her our undivided love and attention all the time, whenever he wants. I can’t wait for her to wake me in the middle of the night (10 times), change all her lovely nappies, sit on our couch with Lily on my lap and go for walks in the summer around the park with Mr T and Sammy…I can’t wait. And all going well, it’s not too far away Lily girl; Mr T’s Nan would tell you Lily that the secret is to ‘just keep going’…(its worked well for her, she’s in her 90s with the softest skin you’ll ever snuggle).

I can nearly see, touch , smell taste a light at the end of a very long tunnel. By no means anywhere near over, but at least the end of this very stressful bit.

Keeping the faith...moving to Bay 2

I am not a very religious person, but Lily has shown me lots about faith and spirituality. Today the Man upstairs has smiled on us and delivered a much needed break to our little family. Today I have felt choked with emotions and tears. Not tears of sadness, but tears of joy and happiness! This morning when I went to visit Miss Lily, she wasn’t there…she had moved…all the way to Bay 2!! I can’t remember the last time I felt so very happy, my mind has been buzzing all day with pride, awe and amazement for our Super Baby Lily. I think she saved this surprise for Grandpa Sharp’s 60^th birthday…I always had a feeling she was going to arrive today…

The last week has been fast moving, with Lily working her way to up to full time high flow…to the doctors deciding to give her a go on low flow…to staying on low flow yesterday and loving it…to still being on her low flow over 24 hours later. Low flow means that there is no pressure keeping her lungs up, she is doing it all on her own. She is also being given a tiny amount of oxygen….0.1litres. (This is a very small %, compared to what she was on earlier this week) It is the closest to breathing all on her own Lily has ever been. She seems very happy with this arrangement, being the most settled and least wriggly I have ever seen her, she spent all morning napping today as she practiced her big girl breathing.

Lily has lots of various people poke and prod her regularly, but this week some new people met Lily from the developmental care team. A physio put Lily through her paces to check things like her head control, sitting and standing, and her eyes movements etc. At this stage she is at the expected level. This is something I will continue to watch with keen interest as with VCFS and being premmie, developmental delays are very common.

At this stage they are keeping her Bay 9 position open, just in case she gets tired and needs to go back to high flow…but I have all my fingers and toes crossed, that she’ll be ok, and power on through. She is 16 weeks old tomorrow, 1 week corrected and 3.612kg. I think that with all her growing, she is fixing her lungs and making them big and strong.

Mr T and I are very positive people, but have been struggling a little lately with the idea of Lily who is now full term still being in hospital. She would have been home if she had arrived on her due date by now, so it is difficult to spend so much time away from her. Especially as she is so alert when awake, and loves her cuddles with Mummy and Daddy. So today was just what we needed…a huge leap towards being together as a family in our own little home.

Time for some more happy tears while I get tea ready…and I think tonight a celebratory glass of champers with dinner to celebrate Lily. 

100 Days Old

100 Days

A big milestone today. Lily has been with us for 100 days. Due to the amazing care, love and support from her NICU nurses, she is progressing well and now weighs 3.04kg. The wonderful people in the NICU have been so kind and supportive of Mr T and I, and always ask to see how you are, and nothing you ask of them is ever too much.

I read the other day it costs about $1000-$1500 per day to have a baby in the ICU. At 100 days Lily has become a $100,000 baby. With access to life saving equipment and expertise of care which has got to where she is now. If this little kid ever considers smoking or other silly things…I will be livid! I’ll be reminding her about the fragile, infected, collapsed lungs she started with…

The NICU celebrate 100 days in the nursery with a special handmade quilt that Lily gets to keep and a certificate. Lily’s friends in the NICU, Ruby and Parker made her special cards as well and gave Mummy and Daddy T a little celebration in the Ronal McDonald room at lunch time.

Lily is working her way to full time on her high flow, currently 2 sessions of 6 hours per day. In a couple of weeks they might try her on low flow, which is one step away from completely unassisted breathing.

Mr T and I met with the genetics team today to further discuss Lily’s recent diagnosis. We are now well equipped with knowledge and facts about the condition so that we can help Lily to the best of our ability as she overcomes whatever hurdles she is presented with. She will be followed very closely by her pediatrician (which she would visit as a premmie anyhow) and as things arise, she will be referred to relevant specialists. Surrounded by a loving family and support network, half Lily’s battle is already won. We know how important parents can be as a determining factor for the future successes of their children…so we think our Lily might just be ok!

Our music therapist has left us with a guitar for Mr T to tinker with in Lily’s bay. We had a lovely evening the other night playing and singing with Lily and she napped. It felt like real family time, amongst the noises, clicks and alarms of the NICU. Lily also has an ipod and speakers next to her that play 7 tracks selected by Mr T to help her soothe and settle when she is grumpy or upset.

Another milestone at the end of this week, with Lily’s official due date this Saturday 17^th October. She will be referred to as a term baby from then on, and have a corrected age as opposed to her gestational one.

Cheers Lily! You are our little super star, keep growing, keep trying, keep strong. 

A bump in the road: VCFS 22q11.2

A doctor, a principal, a policeman, it always makes you feel a bit nervous, churned and anxious inside when they ask for a word in their office. Last Friday afternoon at the hospital we found ourselves in this position.

You always know that if the conversation doesn’t with… “its ok, there’s nothing to worry about, everything is fine”…then there is something wrong, and there is something to worry about. Armed with their facts and data, two doctors very carefully and tactfully delivered Mr T and I some difficult news.

Little precious, strong amazing Lily has another curve ball to overcome. A routine screening test to check for genetic abnormalities that could be related to her cleft palate returned a positive result for velo cardio facial syndrome (VCFS). It is the second most common genetic issue after down-syndrome, occurring in every 1:2000-3000 births.

It is not something there is a cure for, and something that may present few or many challenges for Lily throughout life. The syndrome is known to have 180 different anomalies associated with it, that can be present in varying degrees from mild to severe. The most common and occurring anomalies are congenital heart disease, cleft palates, immunological deficiencies, feeding/gastrointestinal issues, kidney/renal problems and characteristic facial features. Learning difficulties and developmental and speech delays are observed in over 90% of children with the syndrome.

Sounds rosy doesn’t it? It certainly was not what we were expecting to hear. As you can imagine, it was quite upsetting, and with Mr T by my side we listened carefully together.

The picture you hold onto with your premmie baby, of one day taking home your healthy happy baby, becomes suddenly jeopardised and you think about possible future outcomes. Will Lily be happy? Will she have ongoing issues? Will she be ok?  

It was just beginning to feel like we had mastered the premmie baby stuff, and were making great progress, then boom…this one popped up and plummeted our confidence and hope all the way back to rock bottom, where we started this journey 13weeks ago. It feels like we now have twice as many unknowns as we began with.

As with all difficult news, it gets easier with time and as you wake each morning, each new day brings a more positive light to the new situation you find yourself in. Already over the weekend we have gained some perspective and can see things from a more positive frame of mind.

Positives so far… Lily has already overcome two bouts of sepsis when treated with antibiotics, her cardiographs have only ever shown her PDA(open duct) and no other heart abnormalities have been obviously visible, brain scans have all been normal, we already knew she had a cleft palate, she is feeding and growing well (2.8kg now) and we still think she is cute as a button!

Further positives, are regardless of her prematurity, she would always have had the syndrome even if delivered at full term. It develops in the very first stages of development when all the chromosomes are joining together to make baby, genes within chromosome 22q11 are either deleted or missing.

When we meet with a geneticist on Monday they will be able to tell us exactly how many and which genes are missing from chromosome 22q11, which may give us an indicator of what possible effects/symptoms we can expect to see in Lily. In more than 90% of cases it just happens, but Mr T and I have had blood tests to see if either of us may also have the incomplete chromosome.

There is no doubt that what we have experienced so far has been life changing in many ways, but I’m not sure quite what the impact has been yet, or what it will look like in the future. Importantly though, I remind myself how lucky we are to have this special little gift. So many other NICU parents lose their little ones before they are able to return home, or are asked to take them home and love them as there is nothing else that can be done for them. Or how lucky we are that we were even able to have a little bubba, when other couples cannot.

Lily is here, she’s growing big and moving forwards, all pointing towards a happy future at home…even it happens a little later than first anticipated.

She has been born into two beautiful families full of love, and with teachers for parents, her individual learning plan will be written before she even sets foot inside a kindy or school! In times of adversity relationships can become strained, but Mr T and I are rock solid. His care and love for me, keeps me going when I think I can’t and my positive prattle reminds him how lucky we really are! Our little lady, has brought us even closer together and united our amazing family unit before we are even all able to be together.

Really, when I think about it nothing has changed, her treatment remains the same, Lily is still the same, still building up her breathing and feeding.  

Our remarkable daughter has survived so much already; born very ill at 25 weeks and born with this rare syndrome, she clearly wanted to be here and has fought so hard to do so. She has a purpose she needs to fulfil and love to share with us all. I couldn’t be prouder.

With our new found bump in the road, we continue to move forwards as a family with love, determination and extreme gratefulness for lovely little Lily. 

Spring has sprung in Bay 9: 37 weeks old

The beautiful sunshine and spring weather pours in through the window in Bay 9, it means we are approaching the time of Lily’s intended arrival and heading into week 37.

It’s been a little while, but our little treasure Lily has been keeping us busy lately. In the last two weeks she had made lots of great progress. I am so, so proud of our little pocket rocket. She now weighs 2.5 kg. When you hold her she is no longer fits neatly under your chin and above your chest, nor is her skin thin and fragile. She sprawls out all over you, arms in your face, legs near you belly button and grunts and grizzles when she’s unhappy. Her skin is soft and healthy and she nuzzles into you and turns her head so she can have a look at the grown-ups holding her. The warm air she breathes on your neck and the rise and fall of her chest on yours, (sometimes slow and sometimes fast) is hers, her own breathing, so different to the mechanical breaths she relied on previously. It reminds you at that warm cuddly moment, that you have a little daughter, who is in fact a teeny tiny little life.

Still working on her breathing and airways, but feeling like her lungs are getting stronger. The doctors are making her work hard on her breathing and very slowly weaning her off high levels of support, trying her out on less invasive respiratory help. She is on bubble CPAP and has two lots of two hours a day on high flow, which is just two little prongs that sit inside her nose, rather than the big snorkel mask she has been wearing. They will build this up to 4hours and 2 hours over the next week or two. At the moment she is coping so well with all her new challenges, and just keeps getting stronger and stronger. 

I don’t like to get my hopes up, but hopefully we are not too far away from leaving Bay 9 in the next month or so, putting us closer to the door home. As your baby gets healthier, the bays with lower numbers imply your baby needs less support. So, bay 7,8 & 9 are NICU- intensive care, 3-6 are also a bit graded, but more like just a special care nursery, and bay 1 & 2 are like a fat farm, plumping them up before they send them home happy and healthy.

Lily has been madly sucking away in her cot the last couple of weeks, so yesterday while she was on her high flow she had a go at a suck feed. She has a cleft palate, in the soft palate at the back of her mouth. This just means that she has a very good sucking action, but doesn’t have the strength to create a good seal in her mouth. She had a really good go yesterday, using a special teat on a bottle, she managed to have 5mls on her own.

As Lily approaches her original due date we are meeting more specialists who are responsible for tracking her development and other allied health services that will work with us. These people balance out the medical intervention she receives to keep her alive with the impact these things have/had on her physical/emotional development. She is watched by a physio, and has regular eye checks. Today we met a music therapist to talk about how we can support Lily in her noisy room with some soothing music we can leave playing for her, and how we can create positive interactions with her using simple rhymes and songs. Apparently she is already very musical, entertaining the nurses with her regular bottom burps…not sure where she got that from…he he…

She’s such a cute little kid, her cuddles are the best and she has started to look at our faces as we peer into her cot. She attempts to follow your eyes and I swear there was nearly a half smile looking thing today…Every day she amazes and inspires me with her tough little attitude and super strength.

Lily’s new digs

I hadn’t even thought about a nursery, or even bought any baby related items before Lily arrived…her impatience and early arrival gave me the opportunity to do things in reverse. I have spent the last few weeks pottering in Lily’s room getting it ready for that special day when she comes home. It was an important milestone for Mr T and I.  The day we thought it was time to get the nursery ready, was the day we felt more secure and confident about the future of our Lily. Before that it felt too soon, too fresh, too presumptuous.

It is such a nice spot in the house, it’s nice and bright and the sun pours in all day. I have had so much fun putting it together. I chose a grey colour for the walls, with white furniture… and then went rainbow bright on accessories in the end. I picture little Lily rolling around on her rug and hiding under the cot from Mummy and Daddy at bed time in the future.

I spend a lot of time in there already, as this is where I express; Mr T often joins me in the morning while he eats his brekky. Sammy, thoroughly approves as she has discovered the second warmest place in the house under her new favourite heater duct, and also likes to sit on the felt ball rug.