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