Family time! Our first photo with the six of us together.
In medical news, Hannah’s feeds increased as her weight stayed the same last night. Ellie is doing quite well, they are happy with how she is going on the NAVA and haven’t made any changes with her. I just rang and they are both happy and restful.
*Deb
Not too much happened today, everything is staying the same for both of the girls. Ellie gained 30grams, which isn’t a lot but is a gain. Ellie was very good today and well behaved during twin cuddles.
It was mentioned a few times today that Hannah was a level two baby, a lower level in the Nursery. Thankfully for me level two is full at the moment, so she can stay with her sister a little longer. Hannah missed her weigh-in today but will get weighed again soon. Hannah was looking really good today and is still comfortably breathing on her own.
It was a twin hug day!
The day started with Ellie pulling her feeding tube out, including her NAVA sensor, this made the NAVA think she wasn’t breathing and breathed for her (this made her cranky) and then the doctors came and turned that part of the machine off so it wasn’t backing up her breathing at all (essentially a CPAP) and that made her cranky. Needless to say twin hugs were cut short again, this time due to Ellie misbehaving – really she just wanted to be left alone in her bed. So two twin hugs and they have taken it in turns mucking up for them, hopefully I get to have them again.
That is actually the only medical news for today as well, other than that all was pretty quiet. Ellie did require her NAVA level to go up, but was breathing beautifully again once she was left alone. Hannah is still doing very well breathing without any support and could possibly be moved out of level 3 (NICU) and on to level 2 in the next few days.
First was hugs with Ellie.
Then it was hugs with both the girls.
Then it was Hannah’s turn.
It was a huggy kind of day.
*Deb
Ellie only gained 16 grams in the last few days so they are going to trial her on hourly feeds, rather than continuous. If she can handle that they can start to try and had a fortifier (extra calories) to her milk, which will hopefully help her to gain weight faster.
Hannah put on about another 50 grams and has cracked the 2kg mark. Hannah is now only about 50 grams off being twice the size of her sister. This morning they took Hannah off all her breathing help as a trial. Her tummy is still large and the high flow pushes air constantly into her, they are hoping without this she will not have as much air in her tummy and it will get smaller.
I am about to ring to see how she is managing breathing all on her own. Hannah is doing very well, her breathing is very even and calm except when she is awake and grumpy and then it just gets a little quick. Ellie is struggling a little with her hourly feeds but the doctors want to push on so they can get those extra calories into her.
I had a little helper at the hospital with me today to help the girls celebrate their 6 week birthday’s.
*Deb
Levi visiting his sisters with Mummy.
6 week smiles.
Hugs with Mummy.
Little Ellie.
Two of four.
Well after a boy day yesterday it was nice to go to the hospital and see that Hannah’s tummy was much smaller, still large but looking much more comfortable. She really is looking like a regular newborn, except newborns now look like toddlers to me, so I guess a small newborn.
Ellie and I had hugs today. I’m still not use to her being so settled, she just slept on me without squirming or setting off her alarms endlessly. They have halved her morphine again (0.3mls) twice a day and they will continue to lower it. Her steroids have also been lowered again today, she is on the second lowest amount now so it will be lowered one more time before it is stopped. Ellie’s tummy started to get big overnight, so they reduced her feeds slightly. She was on 190mls/kilo/day, the most her big sister has ever been on was 180mls/kilo/day so they are thinking she was just over full. That’s a lot of milk for a slightly over 1kg baby!
So this week is a good week, still exhausting but slightly less stressful. Thank you everyone for your support and prayers.
*Deb
It seems fitting that it is day 40 that I sit down to write this update tonight. 40 is a significant number for the Jewish culture (40 years in wilderness, 40 days in desert, 40 days in the whale etc) and we really feel as if the girls have come through a turning point this week.
Ellie’s oxygen and pressure levels are the lowest they have been and she has now been without intubation for over a week now. This means she is learning to breath a little on her own and looks like she won’t need to go back to having a tube put into her lungs (high infection risk). She is also tolerating a decent amount of milk now and looks to not need another long line (high infection risk). Our little girl who has relied heavily on her middle name since birth is starting to show signs of physical independence and both her parents are so grateful and proud.
Hannah’s big tummy has become quite the problem since before she was born (one nurse today said it was the biggest she had ever seen) but there seemed to be a breakthrough today. A change to a prescription formula and some assistance from her nurse to relieve gas build up has made a big difference and her tummy looks much better today. The consultant seemed confident to keep addressing the problem and manage it better from here on in.
There is still such a long way to go and we would be naive to not foresee more challenges ahead, but after our 40 days of trial it seems like a great time to stop and appreciate how far our girls have come and to look forward to bringing them home one day. As always we are eternally grateful for your support and prayer.
*Matt
Super quiet day today, Hannah happily started her special formula and Ellie and I enjoyed some cuddly hugs.
We will get more news about whether or not the formula is actually helping Hannah tomorrow and a weight update for both of them.
*Deb
Mummy and Ellie hugs.
Hannah and some pictures from her big brother.
In the early hours of this morning Hannah was lucky enough to have her first bath with the wonderful nurse on night shift. She was also kind enough to do foot prints of the girls for us.
*Deb
Ellie is doing very well today, it took two goes by two different doctors to get her cannula in, she was very patient with them and didn’t require additional breathing support. She has been breathing air and her oxygen saturation is sitting on and just under 100%, I’m hoping she continues on this path. She was still a little low on blood so had her transfusion this afternoon. Little Ellie is still have a little trouble giving up her morphine so they have put her on smaller regular does rather than just when she needs it and they will reduce these doses over the next few days.
Hannah has been having a little trouble with her breathing, needed some oxygen and extra support, after feeds. There is a lot of talk about whether or not this is due to her very large torso. This was further investigated today and an xray showed she has a large amount of air in her intestines and bowel. To try and reduce the size of her tummy and ease her discomfort they will start her on a specialised formula that is a little easier to digest. It is also more calorie dense than breast milk so her feed sizes can be reduced (she was on about 350mls per day), they will trial this over the next 2 or 3 days, hopefully we will see some improvement then.
*Deb
Ellie having a sleep in the dark.
Hannah and Mummy hugs today.
Most importantly today……
Matt got to hold Ellie for the first time ever! They had a nice long hug together and Ellie was even reasonably well behaved. It was also family day for us today so the boys got to see Hannah in her big girl bed for the first time and Ellie with her snorkel.
Ellie holding the tip of Daddy’s finger during hugs.
Medically the girls are doing well, both waver between air (21.something% oxygen) and about 25%, both are getting annoyed at their feeding tubes – Ellie set a new record yesterday of pulling hers out 6 times in 12hrs. Even after wrapping her and keeping her hands away from her face she managed to drool on the tape (due to the NAVA, making it not sticky) and then used her tongue to push it out.
They are reminding everyone they are identical, Hannah needed a blood transfusion yesterday and Ellie will get one either tonight or tomorrow morning. Ellie is trying her hardest to be like her big sister. Although Hannah gained more weight, she is now 1.9kgs and Ellie lost 100grams so is back to 1.1kgs,Ellie is on full milk feeds now so should start growing at a pretty steady rate.
We have had a few comments that the girls actually look quite big in the photos compared to real life. Next time you have a ruler in your hand measure 34-38cm, that is about how long the girls are. Next time you pick up a bag of 1kg sugar or flour that is about how much Ellie currently weighs and is probably a similar size to her body. Hannah is closer to a 2kg bag of potatoes. Just to give you some perspective. This photo should help too, I think the singlet is size 0000.
Ellie.
hannahroseelliegrace 