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.

What a little lady!

The love and kindness we have experienced so far on our journey with our little Lily has overwhelmed us at times. For the support from our nearest and dearest we are forever indebted. The wonderful people we have met at the hospital in the NICU are equally amazing. They always make sure you are ok, ask you to be involved as much as possible and have genuine care for the babies they look after…these people are amazing. One nurse in particular, Lily has a special rapport with. Lily has her wrapped around all of her teeny tiny fingers and toes. She made Lily a special little dress to wear. Today we got to put it on. She looks so adorable, like a proper little lady!

Skin time with Mummy

Cleaning up after nine weeks!

Lily also had her first bath today, followed by more cuddles and then dress ups. She gets so relaxed when she has cuddles that she forgets to breathe as much as she is supposed to sometimes. Lily is getting bigger, so they are weaning the temperature down in her isolette, so that she can be in an open crib, hopefully by the end of next week. This means she will be able to start wearing more clothes.

We have made lots of progress in the last few weeks. It is only when you stop to look back at photos from the last eight weeks that you realise what a trooper she is, and how hard Lily has been working to grow, grow, grow! Check her out over the last nine weeks...766g to 1.840kg

Lily Van ‘Walen’

I never thought it would be so exciting to hear the tiny sounds of precious Lily. This week she surprised us with a cry. Something so small, but so special. She’s warming up those vocal chords so she can join Mr T in in a ‘Jump’ rendition.

Heavy Weight

We’ve made it, and passed it! 

We have reached the 1.5kg milestone and smashed it…weighing in at 1.78kg.

Lily is rocking her way to full size baby weight!

We get to have lots more cuddles now that Lily is getting stronger, and each kick, stretch and move is more powerful than the one before…With the positive changes we’ve seen in Lily over the last couple of weeks, it feels like there is a light at the end of the tunnel. Eight weeks in the NICU, and seven more weeks until we can expect to see her looking full term size and a bit closer to coming home!

She's doing a great job with her breathing, still with a fair bit of oxygen, but doing the breath on her own and relying on the machine to provide her with pressure to keep her lungs open.  She has been much more settled when we visit, and its a pleasure to watch our little girl growing and becoming more content with her little life.

Mr T and I have been putting together a nursery at home for Lily over the last week, I have just a few finishing touches to go, and then I’ll share some pics. Sammy has been checking it out and making sure everything is to her liking!

Lily the wonderbaby

Lily update: 7weeks old, 49 days & 32 weeks gestation

After a huge week last week, Lily has managed to stay off her tube for the entire week. A super positive week for the T household with Little Miss proving her strength and determination once again. 

Lily has been having treatments over the last seven weeks to close what they call her PDA. Patent Ductus Arteriosus. When big term babies are born, this duct closes itself with a big cry and seals it off forever so that the blood can be directed to where it is needed. With an open PDA blood is diverted away from the lungs and back into the heart, some blood does not get oxygenated, creating a lack of oxygen delivery to the rest of the body and a corresponding increase in carbon dioxide levels. In addition, the amount of blood supplying other vital organs may also be reduced. The heart may enlarge in order to increase blood flow. A severe PDA may increase blood pressure in the lungs and cause weakness in the left ventricle of the heart. This in turn may create pulmonary edema, which is fluid build-up in the lungs, which will make breathing very difficult.

This has been Lily’s achilles heel…Lily was given a few medications to assist in the closure, the first two, ibuprofen & indomethacin didn’t work for Lily, but the last course of paracetamol has had some effect…yay!!! Her duct is now much smaller and her left side of her heart has gone back to a normal size. We could see these changes reflected in her oxygen saturations and respirations as she has been sitting much higher and more stable the last few days. 

We have had Granny Fe and Papa Vic visiting over the weekend, so Lily has had special visitors and more cuddles for Mummy T and Daddy T too. We think she is going to be Daddy’s little girl, Mr T has a very calming ad soothing effect. His cuddles and voice make her very settled and content. 

Lily is growing big and strong, and I can feel the power and strength of our little one, when we change her nappy and do her cares. She is on 10mls per hour of feeds which are full feeds for her weight, she is so, so close to 1.5kg now, and will be there any day now as she is currently 1.48kg. 

I can’t believe how big she is growing, if I had doubled my weight in seven weeks, I would be very concerned…so when I think about it that way her growth has been very fast. All that growing equates to more use of her bowels, and she swapped houses yesterday as the other one needed a good clean, and was getting a bit too stinky. There was a rather terrible pooing incident the other day; involving multiple nappies, wipes and the cleaning down of the windows in her house…

Since having her tubes removed from her throat, we have heard a few tiny squeaks from Lily, but nothing big yet. Her tubes were placed either side of her vocal chords, so her throat is a bot hoarse and dry, but with time she will recover and hopefully we’ll hear a fully blown scream one day soon, I can’t wait!

Lily has now been in the NICU for 50 days, and we have seen so many other babies visit in the spot next to Lily. Going from strength to strength at the moment, as she grows and gets bigger, she copes better with the big wide world she arrived to early into.

A big week for Lily

Butter wouldn’t melt in this little mouth right? Wrong! 

Peaceful and snug as a bug in a rug, little miss Lily had big plans for herself this week…we were enjoying a quite Friday night bedside with our little girl after a big work week for Mr T; but Lily decided to give us one more little surprise for our Friday night. The self extubator did it again, only this time she did while we were there. I’m not sure there is a more stressful experience, and I’m not going to challenge Lily to find one, this one was more than enough! The horrible feeling in the pit of your stomach, when you know something is wrong, but you can’t fix it, and you’re not sure if everything is going to be ok….I’ll be charging Lily when she’s older for the hair appointments I need to cover up the grey.

Clearly annoyed with her ventilation tube, Lily decided to make matters into her own hands and dislodge it; the quickest way to get every nurse and doctor in the NICU to race in and see what’s happening. The sounds and noises are more serious than usual, as the oxygen saturation drops, followed by the heart rate and respirations.

A silver lining this time though…they trialed Lily without her tube, and a ventilation called CPAP, delivering oxygen just through her nose, rather than directly into her lungs…and so far the little rascal is still on it and going well. Still having desaturations in her oxygen and forgetting to breathe every now and then, but coping so well. Her new gear makes her look a bit rapper, a bit hip hop and bit spaceman like. She has a groovy little hat and a nose shaped cover with prongs that give her oxygen.

I think she must have just been ready to have a go on her own.

More exciting things over the weekend as Mr T had his first cuddle. The first cuddle is so special… Hopefully if she is able to stay off her tube ventilation, cuddles will be able to be more frequent and regular, so she can have more Mummy and Daddy skin time.

 I had a secret hunch that this week Lily was doing a little better, her growing size (1.4kg & 31 weeks yesterday) is helping her cope with life just that little bit easier.

We needed some good stuff this week, I had been starting to get a bit sooky again lately…earlier this week (after two strong weeks of no tears) I found myself balling in the car on the way to hospital listening to Taylor Swift- ‘shake it off’…that’s not even a sad song! I also met my first drug affected mother in the expressing room, and combined with the smoking one I see at the hospital entrance every day on my way in, was all getting a bit too much for my weepy heart, and it’s been feeling a bit heavy.

But our little gem has had a ripper weekend and left us feeling super positive about what she is capable of…no stopping her now!