The new normal

Two weeks since my last post, and as most of you know it’s been a big couple of weeks. 

On Wednesday 22nd March, Londyn’s NG tube was removed and Dan & I moved into the hospital for a few nights. Finally we were almost ready to bring our baby home. Rooming in went reasonably well, although Londyn did lose a little bit of weight, so we ended up staying for 3 nights instead of 2. On the Saturday, after 72 days in hospital, we finally left the hospital to begin our new life as a family of 3. 

It was a strange feeling getting up in the morning and not traveling to the hospital. Londyn settled in pretty well over the first few nights, although was quite unsettled on the Monday night.

On Tuesday, we had a quick weight check in back at Greenslopes, as well as a follow up with the lactation consultant (LC). Londyn had been quite tired and not feeding well on Monday night / Tuesday morning and had been vomitting a bit with each feed. When we were getting her weight checked, we saw one of the pediatricians in the nursery and along with the LC, they thought it may be reflux. They gave me a script for some medication and advised that if she wasn’t feeding well for the rest of the day to go straight to the ED at Lady Cilento Childrens Hospital (LCCH).

By late Tuesday afternoon, Dan and I decided we’d rather be safe than sorry and off we went to LCCH. To be back in hospital after just 3 days at home was very overwhelming. Londyn was extremely lethargic not really responding to anything. 

The Drs and nurses in the ED were amazing and saw to her straight away. They took blood, urine and stool samples and closely examined her. After a few hours, we were admitted and moved up to a ward. This was a completely different environment to the hospital experience we’d had to date. She was in a massive cot, in private room on ward, not attached to any monitoring devices. Nurses came and took her obs every few hours, but other than that we were left to our own devices. 

We ended up staying at LCCH for 3 nights. On the Friday, the results from her stool sample showed she had adenovirus. The Drs advised that there was no treatment as such – just rest and making sure she continued to drink. 
Whilst we were in hospital Londyn had her eyes checked by the opthomologist. She is really happy with them and we just need to have one final check up next week.

Since being home, she has been doing really well. She is still having a bit of reflux, but that is settling down a little bit since being on the medication. She has also decided that the period of time around 8pm – midnight is her awake time so that’s definitely tested our sanity, but we are just going with it and trying to get her to have more awake time during the day and resting when we can.

This weekend Dan’s parents came up for a visit too. They at absolutely smitten with her taking advantage of the ability to have cuddles now (last time they visited she was still in the isolette).

The next few weeks for us are pretty busy with lots of appointments and follow ups for Londyn. These include GP check ups, hip ultrasound, eye check, pediatrician review, osteopathy consult, physio review, cardiology follow up, regular weigh ins with the community health nurse and probably others that I’ve forgotten. 

This is all part of our new normal, but we are glad that we are finally experiencing this, rather than living our life in a hospital.

Much love

❤️

Kasey & Dan 

The home stretch

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

Reflection…

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

50 days of Londyn Rose

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. 

A Massive Week…

10 days since my last post, and so much has happened.

 

Londyn is now 6 weeks old today (33+5 corrected age) and growing stronger every day. She was weighed yesterday and has cracked the 2kg mark!! She now weighs 2050g (over double her birth weight!) and has grown 7cm since birth (now 44cm). The dietician went through her growth chart with me on Monday and had previously explained that babies never grow in direct correlation to the chart. Well, that is babies except our little Londyn! Her weight chart is exactly on the line that it is supposed to be on and her height is above where it is meant to be – but how can we be surprised when she has Dan as her father!!

 

Since moving into her open cot, she has loved it. The temperature controlled mat was taken off after a couple of days as she could fully maintain her body temperature without any further assistance. She took a little bit of getting used to being swaddled, but as long as her hands can get out and she can touch things, she is fine. She still doesn’t like being on her back too much, but she will likely grow out of this as her lungs continue to mature. She has become much more comfortable wearing clothes now and she has been gifted some beautiful little outfits to wear.

 

In my last post, we had turned down her hi-flow and started her on 3 hourly feeds. The combination of this early last week, along with the change to open cot, routine eye test and some other minor changes, caused her to have a really bad day last Wednesday. She had a number of large vomits and was generally unsettled. She was pulling out her prongs a lot and had a lot of air in her stomach which was causing some discomfort. As a result of all of this, the doctor decided to give her a trail off the hi-flow and change her feeds back to 2 hourly to try and settle her stomach. She managed about 4 hours breathing on her own without the hi-flow; however, had a large brady & desat which she didn’t self-recover from so we put her back on the hi-flow. She remained on the hi-flow until last Friday when we removed it completely and she has been breathing well on her own ever since! This is such a great milestone for her to reach at just 5 weeks old; and makes our interactions with her so much easier and comfortable without the tubes on her face.

 

She remained on 2 hourly feeds over the weekend and we trialed her at 3 hourly again since Monday. She has tolerated this much better this time and has remained on this schedule this week without issue.

 

The results of her first eye test came in and were as expected for a baby of her age and birth gestation. A weekly follow up is required and she had her second test this week. The results show that she has stage 1 ROP in both of her eyes, however all that is required at this stage is continual weekly monitoring to ensure that the blood vessels continue to grow correctly to resolve this.

 

Londyn also had her first bath on Saturday. Nurse Grace helped me bath her and she absolutely loved it. She was so calm and relaxed and slept very peacefully for a long time afterwards with cuddles from mummy.

 

On Monday, we started discussing a move from NICU to Special Care. This is such a massive milestone for a premmie baby and one that we have been waiting to happen. A move to Special Care for us also meant a move from Mater Mothers’ Hospital, back to Greenslopes Private and a very different nursery environment.

 

A few final things were required before we could make the move, so on Tuesday Londyn had another echo to check on her PDA as well as a hip ultrasound to ensure her hips were ok given she was breech. The echo showed that the PDA was still there and hadn’t yet closed. However, they are not overly concerned about it at this stage and will schedule another echo as an outpatient at Lady Cilento Children’s Hospital following her due date. If it is still open at that point, we will discuss treatment options, but it is unlikely they will do anything to rectify until she is around 2-3 years old.

 

When babies are in the nursery, they usually arrange bedside scans & tests, however on Tuesday, the ultrasound department were too busy to come up for her hip ultrasound; so, we went on a little trip out of the nursery so this could be done. This was Londyn’s first time outside of the nursery and she was very good for the scan. Initial comments from the sonographer indicate that her hips are fine; however, a repeat scan will be arranged once she is term just to confirm there are no structural changes that need addressing.

 

Then finally, to cap off a very big couple of weeks for our little girl, yesterday was the day she graduated from NICU and we transferred from Mater to Greenslopes. She was buckled up in a transport crib and we were transferred by ambulance. The ambulance officers were amazing. So gentle and careful with the precious cargo they had on board. She made the transition with ease and hardly made a sound during the journey. We are now settled into the new nursery at Greenslopes and Londyn has had a good night. She had a few brady’s & desats yesterday, but these were fleeting and she self-corrected them quickly. These were probably due to the stress caused from the big move.

 

The environment of the 2 hospitals is completely different. We have gone from a very busy 80 bed nursery at the Mater, where there is always something going on and lots of people around; to a small 10 bed nursery (that currently only has a few babies in). We know 100% that our time at Mater is exactly where we needed to be for the last 6 weeks and we will be forever grateful to our amazing Dr David and the wonderful nurses who cared around the clock for our beautiful girl. The dedication and care that these people have for all the babies is second to none. Our baby will always be a Mater Little Miracle.

 

But the move here to Special Care means we are one step closer to home and that is a very exciting prospect for us. The journey from here is now for Londyn to learn how to fully suck feed and continue to gain weight. If she can master these 2 things well, we will be home in no time!

 

We continue to be amazed and so proud of how quickly she seems to be progressing and we can’t wait to get home and be a proper family. Until then, we will continue to spend as much time as we can at the hospital bonding and caring for our little girl.

 

 

Much Love

Kasey & Dan

Look who’s a big girl now!!

A whole month has passed since our precious girl was born and what a crazy month it has been. Her corrected age is now 32+2 gestation – so still 8 weeks of her due date! Still hard to believe!

 

So many milestones have been met and she still has so many more to come.

 

Londyn is now weighing in at 1670g (680g above her birth weight) and on Saturday got to move out of the humidicrib into a big girl bed! This was a little daunting for me as she is still so small; but, as aways, she has managed this transition with ease. She is now in a Kanmed Babybed, which has a heated gel pad in the bottom. This is set to 37 degrees to assist her in maintaining her body temperature.

 

With this move came the opportunity for Londyn to start wearing clothes too!! She is still so tiny and everything is so big on her, but we have managed to find a couple of little outfits that fit her. She is quite funny and doesn’t realise she can still bend her legs when she is in the onesies, so she just lays there with her legs out straight and stiff!!

 

Yesterday we also turned her hi-flow down to 3L and she has tolerated this much better than the last time we tried at this level. She has been on 3L for over 24 hours now and has only had a couple of fleeting brady’s & desats which she has self corrected. This is all positive signs of her continued lung development. The next step from here is to trial her off the hi-flow altogether to see if she is able to breathe on her own.

 

We have today also progressed from 2 hourly feeds to 3 hourly feeds. Again, this is further progression and one step closer to home for us! So far she has tolerated this OK, with just a small vomit this morning. So they will continue to monitor this change and ensure that she continues to digest the feeds and manage with the 3 hour break.

 

Today she also had her first eye test. This is done at the 32 week mark and then weekly or fortnightly thereafter to check for Retinopathy of Prematurity (ROP). This has to do with the formation of the blood vessels in her eyes and due to her prematurity, can occasionally cause retinal detachment. This early screening is to ensure that any early signs of this are picked up and if required, treatment can be started where necessary. We won’t get the results of this until Wednesday and then they will decide what (if anything) will need to be done and if she needs to have weekly or fortnightly tests going forward.

 

All being well with the eye test and if she continues to  handle the change to her feeds and reduced hi-flow, we should be able to move to the Special Care Nursery at Greenslopes Private in the next couple of weeks. But as always, we’ll just take each day as it comes and be guided by the Dr’s and the best interests for Londyn.

 

Much Love

Kasey & Dan

Lots of tears…..Tears of happiness 

This week has been a good week. 😃

Londyn has been stable on 5L of hi-flo since Sunday and today we’ve turned it down to 4L and so far so good. Hopefully the extra week at the higher rate has allowed her lungs to mature a little bit more and she’ll remain comfortable on the lower flow and we can get her off it in the near future.

She has also managed to gain even more weight this week; going from 1220g to 1498g in just 1 week!! Nearly 40g per day and almost breaking the 1.5kg mark! We are so proud of her. ❤️

She had another echo on Monday to check on her heart murmur. They are happy that the PDA (which I explained in my last post) has reduced in size since the initial echo at 7 days old. It is now 1.2mm and what they class as high velocity. We will continue to monitor this to ensure that it closes (and stays closed) but no further treatment or intervention is required at this point.

Yesterday the nurse spoke to us about starting to think about getting her to ‘nuzzle’ in to see if she is interested in having a breastfeed. Whilst they didn’t think she’d do anything because she is not even 32weeks corrected yet, they wanted to make sure we were across the process and the benefits of this. They said they’d probably try in a week or so time to see how she goes. However, due to some restructuring in the ward yesterday / overnight it meant that there was only 1 other baby in her room today (and no other parents for the whole day). We took this opportunity to give her a go at ‘nuzzling’ before giving her a feed in her OG tube.

This was such an emotional moment for me. I actually felt like a proper mum for the first time since having her. Feeling like I was able to provide for my baby with this direct contact was amazing. And she did so well. For a baby that should not even be born for another 8.5weeks, she is truly amazing. I really can’t put into words the feeling that this brought. Whilst she doesn’t have the jaw strength to have a proper feed at this point, she definitely gave it a good crack and it’s all positive signs!!

So all in all a positively emotional day for me today.

I can’t believe Londyn will be 4weeks old tomorrow!!!

 

Much love

❤️

Kasey & Dan