The week of August 22-August 28

Some days here in the NICU go very quickly and there are no changes, good weight gain, increase in milk tolerated, breathing stable and then there are days when there are lots of desats and braddys, x-rays, scans, consultations with various specialist doctors, weight loss and alarms constantly going off. This week there have been both of these sorts in equal measure!

Her weight gain has been up and down from night to night but overall she has managed to put on 180 grams and she now weighs 1.63kg.

Her haemoglobin is low meaning she does need a blood transfusion, however in yet another catch 22, this is the week of gestation when babies start making their own red blood cells. This means if she is transfused her own cells may not kick in. So once again it is a matter of waiting and seeing whether they pick up on their own or not.

On the heart front the cardiology team are now involved in Stella's care and will call the shots in regards to her PDA ligation. An x-ray during the week showed that her heart is bigger than it should be due to it getting more blood pumping through it from the open PDA. Once again it's a wait and see process, but we have been told it will need to be fixed at some point or she runs the risk of haemorrage from the increased blood flow.

While these complications lay ahead of her, her immidiate condition is really good. She is off optiflow with just a whiff of oxygen going under her nose to help her a little, she is completely keeping her temperature and has been moved to an open cot and she is tolerating her feeds fine and is now on 11ml an hour through a perfusor. She has also been back to intensive care earlier in the week and moved back to special care as she became more stable. According to the neonatologists she is progressing beautifully.

We were lucky to be able to have Dan and Harvey here from Wednesday night to this morning and it was so good to see them, although to have them forever would still never be enough time! I miss them so so much and saying goodbye is the hardest thing in all of this. It is very weird to be a wife and a mummy of two and yet not have anyone with you. Harvey is getting so big now and is tlaking and doing more and more and each time I see him I just want to take him all in. He's such a good boy for his daddy and I am so very proud of how Dan is trying to keep everything together on the home front. I keep telling myself God only gave us these trials because he knows we can deal with them. But trust me some days its harder than others to remember this!

Praying continually that all the members in my little family stay happy and healthy and I can't wait for the day when I get to sleep under the same roof as my husband and babies.
Love to all,
Lauren xoxo

Friday August 19, Saturday August 20, Sunday August 21 and Monday August 22

What a blur the last few days have been. It started with a big high on Friday night with a visit from Kady Lacey from Broken Hill. It was so good to see her and introduce her to our little Stella Karine. We got up to the hospital on Friday night to find Stella off optiflow and doing well which was a great feeling. The nurse on with her took lots of photos for us of Stella with nothing on her face which was so good to finally get a good look at her tiny little face.

The next morning we went up to the NICU nursery to find that Stella had been promoted overnight to the special care baby unit (SCBU). She was still off optiflow and going ok but was having some transient braddys and desats but considering she had no breathing help that was to be half expected. Saturday afternoon it all camwe to a halt when I walked into SCBU to find nurses and doctors around her cot trying to get her to breathe. The poor little thing got so tired trying to breathe all by herself that she finally thought she'd have a break. Shame it doesn't go too well when she decided to have that break by stopping to breathe. Needless to say optiflow was put back on and there was lots and lots of tears shed by mummy. I can't even begin to explain the feeling of seeing your tiny little baby go blue and not taking big breaths. My whole body was willig her to get oxygen into her lungs, but she just didn't want to co-operate. She still has her large PDA in her heart which they are thinking is the reason she can sit on the slightest flow of air going into her lungs with no problem, but can't manage without it. There has been no date given for the PDA operation, but we should know in the next few days what is going on. Basically, if the PDA is too large or not closed they have to work twice as hard to breathe which ultimately affects when they can get off all breathing equipment. She just got too tired trying to work against her PDA so hopefully when it's closed she'll be able to bound ahead.

She has put on good weight gain in the last few days and now breaks the scales at 1450 grams or 3 pounds 3 ounces in the old scale. Still tiny but going ahead nicely. They'd like her to be a bit bigger before they sent her to theatre but they also don't want her breathing to suffer to much either so its a real juggling game at the moment.

Tomorrow morning she'll move back to NICU 1 because they don't have any beds left in NICU 2 so it feels like a big back track but at least she'll get the specialised care she needs at the moment. Currently they have a NICU nurse in SCBU just to look after her and another baby because both NICU nurseries are full.

Unfortunately the last few days were filled with many highs and lows which is just the rollercoaster that the NICU journey takes you on and even though we've been through it before you never ever get used to seeing your baby in intensive care and the need to protect and help them along is always there and it tears my heart that I can't do anything to make her journey a little bit easier on her. Time, age and growth are the only things that will get her where we want her to be and we just have to wait for all of those to happen.

Dan and Harvey are leaving to come Wednesday morning. It will be great to see my boys and give them big cuddles. It will also be good to know that if Stella goes to theatre this week, they'll be here to see her before it. I'm so so proud of how Dan is managing working and looking after Harvey and look forward to spending time with our little tornado while Dan sits for a bit with Stella.

Hoping and praying that Stella puts on some weight and starts to breathe a bit easier,
Love to all our family and friends and thank you for all your continued love and support,
Lauren xoxo

Thursday August 18, 2011

Stella redeemed herself today by putting on 50 grams! She now weighs 1.33kg. She looks just like a teeny tiny baby. She's so perfect in every way and today I just kept thinking how perfect she is. Her breathing is still excellent and her feeds remain the same.

Monday 15, Tuesday 16 and Wednesday 17 August, 2011

Well, it's Wednesday and time here is flying. It feels so much quicker than Harvey's NICU experience. Stella has continued to remain perfectly stable with her breathing and continues on 9ml per hour with her feeds. On Monday she put on 30g and weighed 1290g, Tuesday she gained another 10g bringing her in at 1.3kg then overnight lost 30g bringing her back to 1280g. I had a skin on skin cuddle with her this afternoon and had some stern words to her about putting on some weight so we can take her home. Hopefully ahe'll heed my advice. We'll see tomorrow!

Dan and Harvey arrived home at 1am on Monday morning so it was a huge drive for both of them. I felt very lost on Monday so had an hour and a half cuddle with my little girl and that made my world right. We'll all be together soon, I just keep that at the back of my head the entire time.

On Tuesdsay I attended a mother's group for those whose child is in hospital and got a massage! It was so wonderful to just clear my mind completely and fully focus on relaxing my body. It was pure bliss! I got back from my massage to find that protifar (a protein additive) had been put in Stella's expressed breast milk in order to beef her up which is quite ironic considering it was the only day that she's lost weight after it was added!

We were very lucky today and had Juarne and Lachlan Reynolds and Jan Ralph come to visit. Juarne to me to Harbour Town to get some groceries and then came for a visit with Stella. Juarne and Jan gave me some lovely gifts for Stella including some handmade isolette dresses care of the talened Juarne. They are simply adorable and will be putting one on her tomorrow. Today the nurses had her in a 5 0 jumpsuit which looked absolutely ridiculous on her it was so big, but it was nice nevertheless to see her in some clothes.

Hopefully I have some positive news tomorrow about Stella's weight gain and I continue to pray that she remains breathing well and stays nice and healthy.

Hugs and kisses,
Lauren

Friday August 12, Saturday August 13 and Sunday August 14, 2011

Friday
Dan and Harvey arrived this morning and Mum and I are so excited to have them here! It is so nice to see my big boy and I'm amazed at how much he has grown in just two weeks. He just seems so much taller, fatter, smarter and cheekier than when I last saw him!

Miss Stella put on 20 grams overnight and now weighs 1250g. She is on 9 ml of expressed breast milk per hour and is on an optiflow level of 3 with no added oxygen. Neany looked after Harvey while Dan and I went over to the nursery to see Stella for a good couple of hours. It was lovely to be able to both be in there together with her without having to worry about what Harvey was doing! Daddy had a skin on skin cuddle with her, which both she and Daddy loved!

We went out for dinner to Montezumas down Melbourne Street then I went back to the NICU to say goodnight to our little princess then went back to Ronald McDonald House to enjoy a good night's sleep with mum and my boys.

Saturday
This morning we said goodye to Mum and Neany and it was very emotional for all of us. Mum had been down here for 10 days doing washing, cleaning my pump after I expressed, making sure I ate and giving me and Stella lots of love, hugs amd kisses! It was sad to see her go. :( We visited the nursery very early in the morning before we went to the airport where the nurse got her out to give mum a final farewell kiss.

Most of the morning was spent playing with Harvey before going up to the NICU in the afternoon to find that the doctors had decided to take Stella off her optiflow altogether and all that was on her face was her feeding (NG- nasal gastric)tube. They just wanted to test her and see how long she could last. She lasted just over 6 hours which was quite impressive for such a little girl!

We went out for dinner with a group of people staying here at Ronnie's to a Chinese restaurant and it was so nice to get away from the hospital atmosphere for just a night. I visited the nursery quickly when we got back to say goodnight to Stella then came back to enjoy a night snuggled next to my boys!

Sunday
Stella put on 10 grams and now weighs 1260g. They are going to add profitar to her milk which is to boost the protein content of my expressed breast milk in order to fatten her up quickly! Her breathing is lovely and steady with no oxygen and on an optiflow level of only 2.

Harvey was a bit concerned that Daddy was holding someone other than him but he was very good in the NICU and of course all the nurses gave him special attention and he waved at them and blew kisses to them all!

They left this afternoon and to say I'm upset is an understatement. I miss them both so much already and it was gut wrenching saying goodbye to one of my babies in order to look after the other. I just keep thinking of the day when I am able to walk out of those hospital doors with my son and my daughter and begin our life as our perfect little family together.

Praying Stella stays well and healthy and puts on lots of weight and continues to breathe so well and also that Dan and Harvey have a safe trip home and that time doesn't go too slowly until we are all together again.

Love to all,
Lauren

Tuesday August 9, Wednesday August 10 & Thursday August 11

Tuesday and Wednesday there were not many changes to Stella's condition. She remained stable with her breathing and her feeds were increased to 9ml every hour. There was a 10 gram weight gain on Wednesday weighing her in at a big 1.2kg! Both days Stella and I had a big skin to skin cuddle which we both love! I can't even explain how beautiful it is to have her snuggled into my chest!

Harvey had his 18 month old chicken pox needle on Tuesday at the flying doctor clinic which Daddy took him to. He was very brave, however I was a bit of a wreck the whole day knowing I wasn't there for him. It was gut-wrenching thinking how he would be. Of course he was fine and Daddy was great, but Harvey did yell out "mum, mum, mum" as it was given to him :( Dan says he wakes up every morning and runs around saying my name. Can't wait to snuggle him, touch him, smell him and simply have him with me!

Thursday (today)we received a special package from the Stenhouses and the talented Emma made Stella her very own isolette cover. It's just gorgeous!

Stella put on 30g overnight and is now 10g above her birthweight of 1.22kg. She now buckles the scales at 1.23kg! Go big girl! I do most of her cares during the day including giving her a little wipe down, changing her nappy, rubbing sorbeline over her dry skin and putting clothes on her. The last two days she has become so much more aware of when we are there and opens her eyes and tries to follow us with them.

Spoke to the doctor this morning and he said although the open duct in her heart is quite large at the moment it's asymptomatic meaning its not causing any troubles yet with her breathing or growth. If this was to happen (which more than likely will at some time)surgery will be the only option but we'll cross that bridge when we get to it.

Mum had a cuddle with Stella today. It is very important for them to feel any sort of 'nice' touch, especially when they are getting poked and prodded all the time. All the literature says that touch, especially with parents and grandparents is especilly important for the growth and development of premmie babies. They encourage at least 1 cuddle a day if they are stable, which Stella certainly is. She doesn't like being held on her back and much prefers to lie on her tummy against your chest. Her breathing is a lot better then.

They do a heel prick blood test every morning to test her blood gas exchange and before this give her her dummy with sucrose (a sweet tasting liquid) on it to provide pain relief while it's done. It's amazing what a bit of sugar water can do. Apparently something in their brain gives out "happy" chemicals when the sugar water is taken, but only works when they are very young. Wish it worked for adults in the same way!

Dan and Harvey will be here in the wee hours of tomorrow morning and they are on the road as we speak. I am so excited to be seeing them! Neany is extremely excited too! Cannot wait to have my beautiful little family together for a few days.

As always we pray that Stella continues to grow big and strong as I pump, pump, pump away to make some yummy milk for her!

Will post pics with this in the morning because my mummy brain left my camera in the nursery.

Hugs and kisses,
Lauren

Sunday August 7 & Monday August 8

Our little star has now put on ten grams each day and has now hit 1.2 kg! She still has her heart murmur but they cannot use any more medication because she's already had two courses so they are just going to wait and see how it affevts her breathing etc and she might need surgry to close it up.

Her optiflow has been turned down from 4 to 3 in order to try and stop all the air in her tummy which was causing massive explosive poos! She did one for me while her nappy was off and it shot to the end of the cot - just lovely! Her milk has also been increased to 8ml and hour from 6ml an hour which is apparently a big jump in one day, but it has meant that she's now got the long line out of her arm.

She wore her first jumpsuit that Daddy bought her on Sunday and looked so cute! She's just like a miniature baby! She is also becoming more aware of when we're there and opens her eyes a lot more and tries to follow you. On Monday Mum got an hour cuddle which was some beautiful grandma/granddaughter bonding time while I has a sleep in.

Well that's all for now she is very stable and I have been feeling a lot better about the whole situation. We are planning a night out to go to a Chinese restaurant for a group of us here at Ronnie's which will be a good excuse for all of us to get away from the hoapital and think of something else for a while.

Take care and once again we pray that Stella continues to grow strong and stay healthy.
Love Lauren

Saturday August 6, 2011

Well, Stella is unlucky (13 for those of you who aren't Dan!) days old today and it certainly wasn't a very good day.

This morning she had quite a few braddies (heartbeat slowing down heaps) and desats (oxygen levels dropping) which they initially were putting down to an increase in feeds pushing her stomach up on her lungs, however when the doctor came around.
there was a very "audible heart murmur". This means that the PDA (a valve which normally closes in a full term bub but is usually open in a prem) that was closed with medication a few days ago has reopened and is in fact bigger this time. We've been told the usual course of action is another round of mediction which means another drip in her foot, then if that doesn't work surgery to close the valve. Obviously I'm praying for the former! Harvey had the tiniest PDA and didn't need even medication, it just closed on its own.

Because of the extra pressure being put on her heart they have now turned her optiflow (breathing apparatus) up from a flow rate of 3 to 4. She seems to be quite ok on this. She is still on no oxygen just a flow of air is being pushed into her lungs to keep them expanding ss they should.

We had a lovely skin to skin cuddle this afternoon which I'm sure made us both feel good! Then I just sat there looking at her and admiring her in my arms for a while! So beautiful and so perfect in every way!

Until tomorrow, hugs and kisses,
Lauren