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.