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

Onward and upward!

A week of ups and downs for us again this week (I think this will just be the norm for a little while).

As you know, we turned Londyn’s hi-flo back up to 6L earlier in the week as she wasn’t gaining enough weight and her breathing was getting a bit difficult with lots of Brady’s and de-sats. We stayed on 6L up until yesterday when it was turned back down to 4L. However within about 6 hours her stats were playing up again and she needed to go back up to 6L. She is much more comfortable on the 6L for the moment and unfortunately these things are a bit of trial and error until she has developed enough to support herself without it. The good thing is though that we are just on air. No oxygen has been required at all which is great. 

Early on it was also identified that she had a heart murmur or Patent ductus arteriosus (PDA) which is an opening between two blood vessels leading from the heart. This is really common in premmies and wasn’t cause for major concern by the dr. She had an echo done a few weeks ago and this was confirmed and treated with a 3 day course of ibuprofen. Upon completion of this, the murmur was gone and the duct believed to be closed. This has been checked each day with no sign of the murmur until yesterday when the dr confirmed it appeared to have returned. He has ordered a repeat echo to check the duct so we can discuss further treatment options to fix this. Although today, the murmur can’t be heard, so until we can have the echo done on Monday, we don’t really know what’s going on with this. It is apprently common for the duct to open and close with premmies, so we’re hoping it’s just that and nothing more serious.

This week also marked Londyn’s 3 week ‘Birthday’! There is such a difference in her size, movements, alertness and eye contact and we notice new things about her each day. After having a blip earlier in the week in regard to weight gain, she has managed to put on 150g in just 4 days! She’s no weighing in at a whopping 1370g and is 40cm long. That’s a 3cm growth since birth! This has meant an increase in her feeds to 21ml every 2 hours and she has tolerated that really well. Yesterday she was starting to get hungry (and cranky) about 15mins before her next feed; whereas today, with the increased feeds, she was much more settled. We’ve also started giving Londyn a dummy during her feeds so she can make the connection between sucking and her belly getting full. She has been doing really well with this and quite happily spits the dummy out once the feed is finished (although she does like to hang on to it).

We had a bit of a concern this afternoon as her temperature spiked a little (still within ‘normal’ range, but on the high side of normal) and she was having some high respiratory stats. There was concern that she may have an infection of some sort; but the dr was onto it straight away ordering a full blood count that was processed within an hour. This showed no sign of anything, so they are thinking she just got a bit warm in the humidicrib. This can happen as she gets bigger and puts on more fat so is better able to regulate her own temp and needs less input from the heat control of the cot. This is a good thing and given no infection, they’ve just turned the cot temperature down and her body temp has also reduced as a result. 

Finally, today she got to meet her Pop and Nan Carr. Kathy & Ross flew up from NSW to meet our special little girl. And, as you can imagine are besotted with her. Whilst is remains difficult with visitors whilst she is still on NICU, they managed to sneak a few peeks at her throughout the day. 

We’ll keep you all posted with regard to Londyn’s progress.


Much love
❤️
Kasey & Dan

Sometimes you have to take a step back to move forward.

The last few days have been up and down for Miss Londyn. 

After such a good week last week where she was putting on weight & we were able to reduce the hi-flo to 3L with talk of taking it off altogether because of how well she was doing, this weekend has been a little different.

She has lost a little bit of weight (only 10g; but any weight loss is taken seriously in prems) and she’s had some desats where her heart rate has dropped; and on occasion she’s stopped breathing for a few seconds. These are apparently all normal things for a baby of this age, but very unsettling and nerve wracking for us. If she doesn’t have enough help with breathing until her lungs are ready to do it on their own, she uses too much energy on breathing and not on growing.

Today they turned her hi-flo back up to 6L in the hope that this will allow her to use less energy on breathing and focus on resting and growing. This will be closely monitored and if her breathing doesn’t improve, she will have to go back on CPAP and have some oxygen assistance as well. They’ll also check for any infections or problems with her lungs if needed.

Within a few hours of the increased air through the hi-flo; she is a lot more settled and her breathing has become less of a struggle. We are hoping that this is enough and she will stabilize more over night and allow her some time to rest.

Apart from that, there is really no change. She continues to tolerate increased feeds which is always a positive. We have started to give her a dummy (even though I hate them!) just while she is having her feeds. This encourages her sucking reflex and the connection between sucking and her belly getting full. She has taken to this like a duck to water and sucks away on the dummy like a pro! 

So for now, we just have to sit tight and trust the Drs and not rush her progress while her little body continues to learn to live on the outside.

As always, thanks for all the love and support at this very challenging time for us.

Much love

❤️

Kasey & Dan

You never know how strong you are until being strong is your only choice.

I really love this quote! And it has never felt more appropriate than right now. I am currently getting my strength from Londyn. If she can do this, so can I. It sure is tough though!

The last 2 weeks have gone so quickly, but at the same time, it feels like Londyn has been a part of our lives for so long. I can’t imagine her not being here. Every day she makes us laugh, smile and cry! It’s so hard leaving at the end of each day. Some days are better than others, nice nurses make it easier, crappy ones make it so much harder. But we have to keep on keeping on.

Londyn has proved to us over and over again that she is the strongest little fighter I’ve ever met! She is continuing to exceed all expectations that the medical staff have.

On Sunday night, we were moved down a level in the NICU. This was due to the fact that the hospital nursery is really full, and that Londyn was the most stable baby in there (probably one of the earliest born too!) She is still technically in NICU and still receiving the same level of care just in a different section.

Each day when we go in, the nurses say the same thing ‘I don’t really have anything new to tell you. She’s been so good!’ This is really comforting for us to know she is going so well.

Over the last week, she has gone on to full feeds so was able to have her long line removed which is great – 1 less piece of tubing in her tiny body is fantastic. She has had the hi-flo turned down to 3L and the Dr is hoping to trial her off it altogether tomorrow. She will definitely be glad to get those prongs out of her nose. Her little fingers manage to pull them out multiple times every day! 

She is putting on weight – currently 1164g and has grown a whole centimeter! She is so strong and lifts her head and bottom up to move into the position she wants if she’s not comfortable. It still amazes me every time she does this. We have a goal weight of 1600g, as that means she can move into an open cot. The way she is going, she will be there before we know it.

We are hoping that we will get transferred back to the hospital where I was supposed to deliver when she gets to 32weeks gestation (so in just over 2 weeks). However, we don’t want to rush things and will be guided by her pediatrician as to what is suitable at what stage. 

We’ll continue to take each day as it comes and be guided by the Drs & nursing staff. 

I’ll leave you with some photos from this week as we today celebrate Londyn’s 2 week birthday!


❤️

Kasey & Dan

Tiny Feet; Massive Steps

Today marks Londyn’s 7th day in this world, and she is totally making her mark and we have achieved so many milestones.

1. We are a week old! Yay! Happy 1 week Birthday baby girl. It has gone so fast, but seems like forever ago at the same time. She continues to progress in leaps and bounds and amazes me everyday with the little things she does. She is so alert and strong. Nothing will stop her. Today, whilst having kangaroo cuddles, she decided she didn’t want to face the way she was anymore, so lifted her head and turned to face the other way. This may be normal, but I was completely shocked that she would have the strength to make such a move.

2. We cracked the 1kg weight mark today which is incredible. She was born at 990g; but dropped down to 950g during the week. Today she weighed 1030g!! We must remember to celebrate these achievements as they are imperitive to her growth and development. 

3. Clear results on her brain ultrasound! It is a known potential problem with premature babies to have Intraventricular hemorrhage (IVH) which is bleeding into the fluid-filled areas (ventricles) inside the brain. This was obviously a concern for us with Londyn, however the Drs have confirmed her results were clear! Another big tick on the road to getting her home and a big relief for Dan and I.

4. Our first poo-splosion! Londyn has had to have a bit of phototherapy due to a small amount of jaundice. We knew this might occur as we opted to use delayed cord clamping at birth. This process allows additional red blood cells, stem cells and immune cells to be transferred through the umbilical cord to the baby. Because of this, jaundice is a common side effect. The phototherapy used to treat the jaundice can also break down the bike; resulting in a poo-spolsion!! This happened this morning and required a whole new set of linen in her crib! People warned me about this sort of scenario and I suppose it won’t be the last! (Something to look forward to).

5. Increasing breast milk feeds. She is now taking 9ml every 2 hours, with top ups from her feeding tube. The goal is to be at around 13ml-14ml in the next couple of days so that we can remove her long line. Another piece of tubing out of her little body is only going to have positive effects! She has been tolerating the milk extremely well which is great. The only obstacle now is for me to keep up with the demand so she has enough sustenance.

Whilst it has been an emotionally draining couple of days, with me being discharged from hospital and feeling overwhelmed with the prospect of going home without my little girl, when I stop to think about everything she has achieved in the last week, I am overwhelmed with pride and adoration for what a strong little person she is already proving to be. Don’t get me wrong it is still hard to leave everyday but I know she is in the best care here. 

We love you Londyn Rose. Keep kicking those goals and proving everyone wrong! We will have you home in no time!

Kasey & Dan