Tuesday, December 17, 2013

Three weeks

It has been a wonderful week at home since my last post. Briella is a sweet little newborn who mostly sleeps very well - although she can be a lazy eater. She's very easy going, and we've been out and about quite a bit. She snuggles into the Boba Wrap carrier (which I LOVE!) and sleeps almost the entire time we are out of the house. Now that she is three weeks old, she is more alert and enjoys observing whatever is going on around her.

Last Friday, December 13, we went back up to the hospital and Briella was formally discharged. We were given not one or two follow up appointments, but TEN of them. Such is life with a newborn with special needs! Because of the holidays, they don't start until after the new year - but January is going to be a very busy month for us!

On Friday, we saw our orthopedic doctor as well. The most immediate concern is Briella's feet. We plan to do some taping to see if that will help, and in the new year we will probably start casting. Both of these involve manipulating the feet into a more "neutral" position, and then using tape or casts to hold the feet in that position. This will be repeated weekly or so, and hopefully over the long term, the position of the feet will improve. 

When Maddy was discharged from NICU, it was also early December. This is the peak season for colds and flus, and as such, the doctors recommended that she have the vaccine for RSV. RSV is the main cause of pneumonia and bronchiolitis in young children, and children who are at risk (such as those who like Maddy and Briella have airway malformations and restricted lung capacities) are advised to have the vaccine. It's not a true vaccine which causes the body to create antibodies, but rather an infusion of the antibodies themselves. Every season, a child needs five shots and when Maddy was born, these shots would have been paid out of pocket - for a total cost of HKD$40,000!! (about $5,000USD/AUD). At the time, we couldn't justify the expense. Fortunately now, that cost is covered by the public health system here in Hong Kong (only for at-risk children) and so Briella will be able to get those injections for free and we can sleep a bit easier this flu-season! (particularly since this time last year, Maddy was hospitalised with bronchiolitis). 

Friday was a busy day - in addition to our time in the hospital, and also attending Lana's school Christmas concert, my parents and sister arrived in Hong Kong to spend the holidays with us! It has been wonderful seeing them again, and for them to meet little Briella. Every day I am amazed at how blessed we are that she is healthy and strong and HOME! 

Last week, we took Briella to have some professional photos done. I'll finish up this post with some of my favourites :)

Tuesday, December 10, 2013

Two weeks old

Today, Briella is two weeks old. It is crazy how fast the time has gone - but in other ways it seems as though she's been with us for far longer than that! We are loving having her at home, but it is exhausting! She is still learning to eat and so feeding her takes a lot of time and energy. On top of that, I'm pumping breastmilk for her as well, which also is demanding. I'd forgotten how much work a newborn is - I haven't had a newborn at home for over five years, since Maddy came home much later. It is all worth it though! 

Yesterday, we went up to the hospital again - I thought it was to be discharged, and for some reason I was expecting to get up there, talk to the doctors straight away and then leave within a couple of hours. It wasn't anything like that though! I arrived at 10am and was promptly told to wait outside of the ward since it was not visiting hours. The nurse told me that she would call me by 3pm to let me know "if Briella had to stay, if she was given more home leave, or if she would be discharged". Not what I was expecting! I posted on Facebook and had a few comments about how the nurse sounded nasty, and in some ways it seems that way - but it is just the difference in culture here. Sometimes it sucks - but she wasn't being cruel or rude, just following protocol and letting me know all possible outcomes. Regardless, it was very impersonal and lacked any kind of warmth that you might get in a Western hospital. 

To cut a long story short, after a few hours, Briella was given more home leave and so we have to go back up to the hospital on Friday to repeat the above experience. At least this time I know what to expect! I think if all is well, she will be discharged then. She is doing very well at home, but she is still not yet back up to her birth weight and I think that is the main thing they want to check again. The feeding issues can make it harder for little ones to put on weight - so we need to keep making sure she's drinking enough every day!

In other "news", Briella's ear started "bubbling" yesterday. Most kids with diastrophic dysplasia develop cysts on their ears within the first few weeks after birth. They stay swollen for a few weeks and then harden, forming "cauliflower ears". The cysts can be treated by a variety of different methods, including compression or draining the fluid. When Maddy was in NICU, hers were treated primarily through compression - you can see some of her head bands in this post here. For Maddy, it kind of worked - her cysts are mostly flat, but they do have a bit of scar tissue in both ears (you can see the end "result" in the header of this blog). For Maddy, however, the compression bandages ended up forming a pressure sore behind one of her ears, and also started misshaping her head, so the doctors decided to stop. We'll see what happens with Briella's ears. She was born with perfect ears so hopefully they don't scar too badly!

Here's a few phone-pics for you to enjoy:

Maddy's NICU file is kept on Briella's bed - the doctors and nurses had to review her case in preparation for Briella's birth. Briella owes Maddy big time - I'm positive this is the reason why Briella had a far "easier" time in NICU than Maddy did.


This is what happens when you have older sisters ;)

Sunday, December 8, 2013


They say that a picture says a thousand words. So here is how our afternoon went yesterday:

Briella was given home-leave on December 7th, my due date, at only 11 days old. We will go back to the hospital tomorrow morning to be formally discharged. Life with her at home is exhausting, but wonderful - just as I knew it would be :)

Friday, December 6, 2013

December 6

On December 6, 2010, we brought Maddy home from hospital.

On December 6, 2013, I went in to the hospital to find Briella without a feeding tube, and taking all of her feeds orally!

Since we got up quite late, I didn't have a chance to talk with the doctors today so I don't know when discharge will be, but I hope and expect it to be very soon. I'm confident that she is ready to come home and that we are ready for her to be at home :) I fed her an entire bottle tonight and she is a LOT easier to feed than Maddy was when Maddy was first discharged! 

It was really hard to leave Briella today - I think partly knowing that we are so close to the end - and also (as you can see from the pictures above), she was SO alert. She's generally such a sleepy baby - as many newborns are - and I don't know if I've seen her this alert and awake before. I just wanted to stay and chat and cuddle with her... 

I'm very eager to talk with the doctors tomorrow to hear what their plans for Briella are - hopefully we'll be home together very very soon!! 

Nine days

When Maddy was born, she spent her first 124 days in NICU. Four months and two days. She was discharged straight from NICU and never spent any time in the special care baby unit (SCBU - an area for babies with less serious needs who are closer to being discharged).

Yesterday, I got a call from the hospital - they "graduated" Briella from the NICU to SCBU. So in total, she only spent nine days in the NICU! 

The day Briella was born, the doctor said to Bernard "Don't expect things to be the same as they were for Maddy. You have to realise that Maddy was our first case of diastrophic dysplasia so we were still learning. But now, Briella is our SECOND case!" - cracked me up... with one child, we doubled their experience ;) 

Briella is still in the hospital and continually doing better and better with her oral feedings. Two days ago, she could take 30mL, yesterday she took 45mL at one feed, and then when I was there, I fed her 55mL before she spat it up all over both of us ;) The goal is that she can take up to 60mL for all 8 of her feeds - however they may let her go home if she is doing well enough. Maddy was only taking about 70% of her daily goal when she was discharged three years ago. With the improvements that I see, it is entirely possible that she will be home next week. 

I keep pinching myself to remind myself that it is real. After our experience with Maddy, I hadn't even imagined that things could go this smoothly. Apart from one frustration with one of the nurses, I haven't had any issues with anything at all this time around - compared with last time where it felt like a fight from about day three... 

My parents and sister will be coming over to Hong Kong for Christmas - they get here on December 13. I think the odds aren't bad that Briella will be home before they get here :) That will be nice...

Wednesday, December 4, 2013

8 days old - oral feedings

Today, December 4, is the day that I was meant to deliver Briella if we hadn't rescheduled the cesarean to last week. Instead, we have a healthy 8 day old who is doing better and better every day. 

Briella is improving with oral feedings. Two days ago, she had her first bottle from the Haberman feeder. She didn't take very much but it was a start. Yesterday, I had some frustrations with the hospital/nurses because despite the afternoon shift nurses telling me that they would be consistently giving Briella oral feeds throughout the day, the nurse who was on duty yesterday at lunch told me that they hadn't been doing that. 

There are two "visiting times" at the hospital - the first is at 12-1pm, the second is at 3-8pm. Parents are not allowed in the hospital outside of those times. Because of the way Briella's feedings are staggered, if I want to be there for a feed, I need to be there either at 4-5pm, or at 7-8pm. Neither of those times are ideal for me when I consider the schedules of Lana and Maddy (I either miss dinner time or bed time), but I think it is important so I'm trying to be there for at least one bottle every day. 

After yesterday's frustrations, I went back up to the hospital in the evening ready for a bit of a fight - however the nurses who were on duty at that time were very supportive of our efforts in oral feeding so it wasn't much of a fight after all! I managed to feed her a bit, however she was very sleepy and didn't take more than about 10-15mL. 

Today, the nurses have been more consistently giving Briella oral feeds regularly throughout the day and when I went to give her the bottle this afternoon, I noticed a huge improvement! She now is actively sucking and swallowing, and it was much easier to get her to take 30mL even though she was very sleepy. 

I spoke with the doctors today (which hasn't happened very much - I seem to always miss the doctors rounds!) and they were very positive. I asked if we could try 100% oral feedings for 24 hours the next time that the feeding tube comes out and they said they would try that. We did that with Maddy and the first attempt was not successful (she was not drinking enough and after 24 hours they needed to replace the tube) but the second attempt was successful. Also, the doctors said that we should expect Briella to be home within one to two weeks!! 

If all continues to go well, they will move her out of NICU soon and into the special care ward - and from there it is only a short step from being home with us. I'm so happy that she has done so well and is so healthy - here's hoping that she continues to get better at oral feeding and she will be home in no time at all!!

(attempting to get a photo of my sleepy girl with her eyes open!)

Monday, December 2, 2013

Briella - 6 days old

The past couple of days, I've been really missing Briella at home and wishing that the girls could meet her. Today, I planned to ask the doctors bluntly what their plans for her would be rather than guessing and hoping and trying-not-to-get-my-hopes-up-too-much. 

I was happy to see today that Briella not only was off the oxygen tube (that happened yesterday), but they have also removed the IV! So currently she is not hooked up to anything apart from the monitors! Good job, Briella! 

I asked the nurse what the plan for her is, and basically, as I'd only dared to hope, they are going to start oral feedings and once she can take her entire feed by mouth, she will be able to come home! This morning, the occupational therapist started training and fed her 1mL by syringe. I asked if the nurses can continue to feed her orally at every feed, and if we could use the Haberman teat to feed her. The nurses were fine with that, so this afternoon, I brought it in and we tried it out - she took about 15-20mL by mouth! She needs to be able to finish around 60mL. 

I'm hoping that if she practices at every feed, she will be able to achieve this goal quickly so she can come home. The end is already in sight :) It could be a week, it could be more, but I'm pretty sure that she should be home for Christmas :)