In the last 10 days Londyn has ticked a few more boxes on the road to getting home.

Londyn hit 37 weeks corrected gestation on Saturday which means she is officially classed as being ‘term’ and only 3 weeks until her official due date.

She had another ROP eye test on Wednesday where the ophthalmologist reported her right eye is looking great and her left eye is not far behind. As a result we have moved to fortnightly eye tests (instead of weekly) and will hopefully only need one more to be done. We will likely have this done at Lady Cilento Childrens Hospital as an outpatient.

Londyn also had her routine ‘term’ head ultrasound on Thursday. This was all clear and we don’t need to have any further checks in regard to this. 

In QLD, there is a screening program called the ‘Healthy Hearing Program’. This is offered to all babies before leaving hospital and is performed with parental consent. The test involves the nurse placing several small sensor pads on the baby’s head, to record their response to soft clicking sounds that are played into their ears through soft earphones. Londyn had to wait until her was ‘term’ so had hers done last night and passed! We didn’t really have any doubts as she is so alert and responds to sounds and voices, but it is nice to know for sure that everything is ok with her hearing.

She has continued to do really well with her feeding and has been having 5-6 suck feeds each day with only 2-3 tube feeds required (mostly overnight). We have today decided (with the Dr) to change her schedule from 3 hourly feeds (where we were waking her for suck feeds during the day) to demand feeding. This means the feeds times are up to her. They will only let her go a max of 4 hours between feeds at this stage. This should allow all of her feeds to be suck feeds overnight as she will wake when she is hungry (or that’s the idea anyway). We’ll see how this goes overnight.

Her weight gain has continued to be really positive as well, which was something I was a little concerned with given the increased number of breast feeds she has been having. In the last 48hrs she gained 80g and along with other steady increase during the week, she now weighs 2.91kg! We are almost at 3kg and 3 times her birth weight. 

Given Londyn had been caffeine free for over a week with no Brady’s or desats, on Friday we removed her sats monitor. This used to track her pulse and oxygen saturation and was connected to the wall so we were limited in regard to movement with her. This was replaced with a Graseby monitor which tracks her breaths and alarms if she doesn’t take a breathe in 20 seconds. We are also able to unplug this whilst she is out with us and it only connected when in the cot. It is so great being able to pick up and cuddle our baby without cables connecting her to the wall.

Londyn is also having more awake time during the day which is really lovely. We can’t wait to get her home where we can do more with her and stimulate her a lot more. It must be getting pretty boring for her in here. 

We are so lucky to have such great nurses here. Often when we come in in the mornings or call overnight the nurses tell us that she has had lots of cuddles if she was unsettled. It’s really nice to know that they care so much for the babies in the nursery and take the time to cuddle them when needed. Londyn thanked one of our nurses the other night for her amazing care by having a massive poosplosion!! So bad that she had to give her a bath! I’m sure these are all things that we have to look forward to in the months ahead!!

We will keep you all posted with her progress and final steps to getting home, but we are almost there and it is so exciting (and a little nerve wracking)!

Much love

❤️

Kasey & Dan

Today as I sit here and watch my perfect little girl sleep (well wriggle and squirm and grunt in her cot really!), I have time to reflect on the past 8 weeks.

Upon reflection I think about all the things that we’ve missed out on during this whole journey. Whilst we are ever so grateful that our little girl is happy and healthy and getting closer to coming home every day, I can’t help but feel saddened by what we’ve missed by not being pregnant for longer and having a ‘full term’ baby. 

Today was the day we were booked in to have our professional maternity photos taken, and maybe that’s why I’m thinking of these things now. Yes, Dan is a photographer, but these photos were supposed to be of us, for us. Just us and our bump. Our bump that, we should have been counting down the days to meet.  I didn’t take many photos whilst I was pregnant because I’d only recently actually felt pregnant and not just a bit chubbier. This is one thing I regret and I’m sad that we don’t have these photos to look back on. 

There are lots of other things that we missed out on too. Dan had only just felt Londyn kick once or twice in the days leading up to her arrival as they weren’t really strong enough to feel externally just yet. This is something that we can never get back. Special moments for Dan that he should have had more of. We also missed our antenatal classes. They were supposed to commence on 17th January. With Londyn arriving 5 days before then, we didn’t have a chance to learn what to expect. We didn’t get the tour of the hospital and birthing suites (although we’d been to Greenslopes many times); instead we went to a hospital we’d never been to before, to an environment that was completely foreign to us. I was excited about the classes. The anticipation of meeting our baby was definitely growing!

I was also looking forward to the 6 weeks of maternity leave that I had before Londyn’s due date. I had plans for this time – pregnancy massages, pottering around and setting up the nursery, catching up on sleep, washing all the clothes and linen, and just enjoying the last weeks of being pregnant. But, as you know, this never came. 

Family and friends have also missed the opportunity to welcome our little girl into the world. We’ve chosen not to have visitors as the hospital environment makes it too hard and Londyn’s immune system is still immature and we just can’t risk any infections. This is tough for all of us. I imagined us having family outings and taking daily walks with the Pram. Welcoming aunties and uncles and grandparents and cousins and workmates into her life to share the joy a new baby brings. Instead, you’ve had to get to know her through photos on your screens and we’ve had to get to know her within the confines and regulation of a hospital. 

We’ll never know why Londyn came early. It was just what happened. And whilst I can sit here now and acknowledge what we’ve missed out on (even though it is a little sad) these feelings are totally outweighed by the pure joy I get every day I see my beautiful girl. 

Now, for the main reason you all read this – Londyn Rose!! 

The last week has been great. Londyn has continued to gain weight (now 2640g) and is 45cm long (although this is not an exact science so we take the length measurement with a grain of salt). As a result of her good weight gains (80g-100g every 48hrs) we have stopped the milk fortifier that had been added to my expressed breast milk (EBM). We stopped this on Monday and were told to expect a weight loss or plateau while she gets used to just the plain EBM. Since then, she’s gained 30g which the dr is quite happy with (and yay for not losing weight!!!). 

We’ve also gone nearly a whole week without having any Brady’s or desats which I am probably most happy about! As a result of this, we removed the ecg monitoring leads and she has just had the sats foot probe monitoring her pulse and oxygen saturation and we will also be stopping her caffeine on Sunday night and see how she copes with this. She is on quite a high dose of caffeine which has been used to remind her how to breathe. If she manages well once the caffeine is ceased, we will be able to remove the sats monitor and move to a Graseby monitor which is a portable device which alarms if she doesn’t take a breathe for 20 seconds. This will mean Londyn is not ‘connected to a wall’ so we can move around more freely with her. 

Suck feeds are progressing well and we’ve started to adjust her tube feeds down to account for what milk we estimate she is getting from the suck feeds. She seems to have the whole ‘suck, swallow, breathe’ at the same time thing pretty sorted! 

Slowly but surely we are getting closer to being home. We are taking it day by day and week by week but fingers crossed she continues with her amazing progress and we will be home before her actual due date.

This week we also had a visit from my god parents who were in Brisbane for the Adele concert. My mum also visited at the same time. This was the first time that Londyn had cuddles from anyone other than Dan, myself or the nurses. To say they were smitten with her is an understatement.

Much love

❤️

Kasey & Dan

I really can’t believe that we’ve been on this roller coaster for 50 days!! But, that means 50 days closer to going home.

The past week at Greenslopes has been great. It is such a relaxed environment here compared to the busy Mater nursery. It’s been really lovely to have some space and privacy to spend with our little girl. We’ve been able to have lots more cuddles which has been great!!

All in all, it really has been a pretty uneventful week. Londyn is having less Brady’s and desats which is a really positive sign. She has grown a lot too, now weighing 2420g! We are almost at the 2.5kg mark!! She has been tolerating her 3 hourly feeds well and the next step will be demand feeding. She is showing many of the cues that she should be at this stage including waking for feeds & sucking on her dummy whilst feeding. These are all really positive signs and hopefully she’ll take to suck feeding really well. 

She had her weekly eye checkup on Wednesday. Thankfully they were able to get the ophthalmologist to come to Greenslopes to save us needing to transport her back to the Mater each week. This saved a lot of stress and disruption for her. The report shows that she has stage 1 ROP in her right eye and stage 2 ROP in her left eye. There is not any major concern over this at the moment and they will continue to monitor weekly. There are 5 stages with ROP and we’ve been advised that they generally don’t let it get past stage 3 without intervention (I.e laser treatment). We are hoping that we don’t get to that stage and it corrects itself, but are confident that the medical teams will act promptly when required. 

We also had a physio visit this week. She is very happy with Londyn’s movements and hips. We were given a peanut pillow to use whilst she is awake and on her back to assist with keeping her head in the centered position. This will ensure that she will not get a flat spot and help her head become more rounded. Londyn also amazed the physio with how strong her neck is whilst she is on her tummy. She really lifts her head up now and is much more controlled with her movements. We will have another follow up before going home to make sure everything is on track and continue to see the physio once we are discharged.

The days are definitely going quicker and we are well over halfway to being home and we can’t wait.