A note from yesterday Ellie gained 100grams and is now 1.6kgs. The only change with Ellie today is that her diuretics stopped. They just want to give her a rest otherwise, in case she has to have surgery on Thursday or Friday.
Hannah is doing extremely well. She doesn’t need to have her eyes tested again for 9-12 months. She also had 4 bottles in a row today.
Both girls were quite happy during hugs today and Ellie didn’t push Hannah around too much which is a nice change.
*Deb
It was Daddy’s turn to visit the girls again today and there was a rare opportunity for me to have twin hugs. Holding both the girls together was presented the physical reality of what I knew mentally – Hannah is more than twice as big as Ellie. The nurses kept telling me how cute is was to see the girls together but I couldn’t help but feel for Ellie who is struggling along at such a slow pace.
The girls also had their eyes tested today, and Hannah got a clear report but they were very concerned about Ellie. She has had an aggressive decline since her last scan and if they get another bad result on Wed they will be booking her in for surgery immediately to try to save her eyesight.
It is a real challenge knowing that the number of days on this blog will go well into three figures, but we also celebrate the answered prayers that the girls would make it into this world at all, let alone do as well as they have done so far.
Twin hugs with Daddy
Hannah spent 20 minutes staring at her little sister
Well chubba chops Hannah gained another 160grams (since Wednesday), bringing her to just over 3.2kgs. She drained her bottle for me and seems to be feeding well. Once she is taking all her bottles and she regularly opens her bowels, we could finally have a baby at home! Finally a light at the end of the tunnel and the prospect of weeks instead of months.
Ellie belly or as I like to call her sometimes, smelly Ellie (she gets her laxative not long before morning hugs so they tend to be on the smelly side), was awake for about 1 1/2hrs. She was lifting her head up off my chest and looking around and pulling faces at me and licking me. She is still extremely uncomfortable getting feeds due to her reflux but her oxygen levels stayed in the low twenties overnight and all day today. It is looking like all those prayers and the blood transfusion worked – she is comfortable on high flow again. She gets weighed tonight or early tomorrow morning, I’m hoping the diuretics won’t stop her gaining some much needed weight.
Hannah bananah and Mummy
*Deb
Not too much to report today. Ellie is quite settled and happy today, not too much crying or whinging. We had afternoon hugs today instead of morning ones, which was a nice change for us both.
Hannah is now doing two suck feeds, then one tube feed, then two suck feeds, etc. She still isn’t finishing every bottle but is doing extremely well with this routine. Overnight they still tend to only give her a bottle if she is really waking up for it.
Back to morning visits tomorrow and a reminder to myself of how far the girls have come, particularly Ellie – slow and steady wins the race.
*Deb
Ellie is still on high flow!! Her blood transfusion went well, she was still working a bit hard at her breathing this morning but seemed to improve throughout the day. Her oxygen requirement came day throughout the day also. Tonight she has been put back into a house (humidicrib) as it was a bit much for her to maintain her temperature, they can lose weight if they have to work at this too hard. She did lose 30g today which brings her to exactly 1.5kgs. My little darling is also telling everyone that she is now 37 weeks, she has been crying and whinging for her feeds today and is sucking on anything she can get her mouth on. Unfortunately with the level she is currently requiring on her breathing support she isn’t allowed to have a bottle.
Hannah isn’t finishing her bottles as well as she has been the last two days, but is managing 3 bottles in 24 hours (she has 7 feeds a day). Steps backwards are expected as with everything these girls do, she is just showing a few signs of fatigue as she is putting more work into getting her milk.
*Deb
It was so wonderful to walk in today and see Ellie in her big girl bed! And wearing proper clothes.
Last night Ellie’s amazing nurse reunited the girls for a brief amount of time (they both cried when it was time to part again).
Hannah came off all her monitoring today (and a very girly little number was found for her to wear).
So the girls decided I wasn’t quite smelly enough today. Ellie did a beautiful pentavite (a disgusting multivitamin for kids that is supposedly pineapple flavour and bright yellow) vomit all down the inside of my shirt and all over herself during hugs today, she was very sticky afterwards. I then went to see Hannah who was quite smelly, I changed her nappy, bottled her and while I was burping her she decided to fill her nappy again. I was thinking that is great two good size poos she must be feeling good. I took her nappy off to change her again, she wasn’t done….. my shirt, pants, hand (dripping off my hand), the chair behind me, her crib and the floor were all covered and very stinky! Needless to say she was looking quite relaxed (and probably no longer weighs 3kgs!). Thankfully my amazing midwife had popped in to see me so she was able to get my a shirt to wear home, however it was still a very smelly hour in the car.
**Just in, Ellie has been struggling with her breathing this afternoon, they checked her haemaglobin levels and they are low again. The nurse has just started a blood transfusion and we should know by about 11pm whether or not she will have to go back on to CPAP or if that life saving blood will be enough to help her breath easier. If you are reading this tonight, prayers for Ellie in this particular area would be appreciated, she really gets frustrated and annoyed at the CPAP head gear (plus we want her to breath easier on the high flow). Thanks
*Deb
Ellie celebrated her 10 week birthday with an impressive weight gain, she is now 1530grams!!! Hannah cracked the 3kg mark!
Ellie is having a little bit of trouble with her breathing today, it could be her immunisations, her big tummy or her slightly lower level of red blood cells. The reflux also contributes to her oxygen saturation fluttering. She is slowly getting bigger so we are hoping that helps. We are very proud of Ellie’s big weight gain and she is even on diuretics.
Hannah is having a bottle every second feed and whenever she wakes for it during the night. She is only leaving 10-20mls, if that, each bottle. Clever girl.
I want to celebrate the girls 10 week birthday by saying thank you to some people.
Firstly we have reached 45 blood donations!! That is 4.5 people donating every week, THANK YOU! You have helped save many many lives! If you haven’t yet donated and are able to remember to join the Hannah Rose Ellie Grace RED25 group (5 more donations are needed in the next 2 weeks to reach our original target of 50 donations by the time the girls are 3 months old).
https://www.donateblood.com.au/red25/join-group
Thank you to all the people who sponsored Roy’s half marathon, you have contributed to a machine that will make necessary procedures (for any baby that is in level 3 for over 5 days) much quicker and less stressful for the baby. You have also contributed to research in PDAs (the open heart valve that Ellie had) and the possible use of paracetamol as a treatment. THANK YOU!
Thank you to everyone that has been a part of the meal rosters – the caring group, Marie’s group and Gen’s Bosco Primary school group and all of those that have provided us with additional meals and groceries. It has made life so much easier and most importantly allowed me to spend what little time I have with my boys, who have noticed my absence. THANK YOU!
Thank you to all those people that have contributed to petrol, take-away coffees, parking and other general hospital related costs, your contributions have been a great blessing (and the coffee helps with the early morning drives) THANK YOU!
Most importantly thank you to everyone who has journeyed with us. Some of you have been on board since I was 11 weeks pregnant, when we starting having problems, last November. Thank you for your support, love, understanding and prayers. Of all the things we are grateful for, it is all of you that have had the greatest impact. Some of you we have never met, some are our closest friends and family – it is all of you together that have helped us get through this last 6 months and these last 10 weeks in particular. THANK YOU!
*Deb
After two, much needed, days away it was nice to see the girls. Ellie looks older, the diuretics have taken away all her steroid and previous medications swelling. She is having a very stable day and the only vomit in the last 24hrs was all over me and my shirt during hugs this morning (her way of saying hello after two days without her Mum). There were no changes today, except she will receive the second part of her 6 week vaccinations today (she had the 1st needle yesterday).
Hannah looks amazing and is doing very well. She is attempting to have a bottle every second feed at the moment, after a full 24hrs we will know if this wears her out too much. She also had her hearing test and passed – she won’t have to be re-tested for 12 months. Otherwise Hannah is still just cruising along.
*Deb
Firstly – Happy Birthday Deb. I think anyone who reads this blog would agree she is an amazing and inspiring person who deserves many blessings on her birthday. Today I left the house at 6:15am and am still to go home (currently 10pm), so today she has been looking after the boys.
Today started with the news that Ellie had lost 45 grams which wasn’t great but half expected with all the diuretics she is on. They are increasing her feeds and cutting out one of her drugs in the hope she can put on weight. For now she has a while longer to spend in her humidi-crib. She will also get her vaccinations tonight to catch up to her sister.
Hannah is still doing great and threatens to come home every day. The nurses are still wanting her tummy a little smaller before they let her go though.
Both girls had their final head scans today and were all clear of any bleeds.
Hannah getting a headscan
Settling Ellie after her cares
Nate and Levi have been complaining about not getting to see their Mummy so it was Dad’s turn to visit the girls while the boys hung out with Deb.
Ellie is still making very small steps and they had to turn her high flow pressure back up overnight and will attempt to bring it back down tomorrow after she has had a rest. She did have her first suck of a bottle today and managed to drink 3mls of the 5mls offered. She was given lots of praise from the nurse and her dad and responded by throwing up all over her Dad’s stomach during hugs.
Hannah continues to fly along. She put on another 130grams and is now just shy of 3kgs meaning she has the biggest weight advantage in level one if they decide to introduce baby wrestling tournaments…..which is unlikely. After demolishing her 65ml bottle today she is well on her way to coming home and it looks like we have purchased our new larger size car just in time!
Fr Mick, who had a quintuple heart bypass just days ago, was able to visit the girls today which was an amazing blessing to come out of two difficult circumstances. His hospital bed is just a 5 minute dawdle from the girls
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*Matt
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