Tuesday, December 10, 2013
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 ;)
Posted by Nicole at 10:44 PM
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 :)
Posted by Nicole at 9:56 PM
Friday, December 6, 2013
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!!
Posted by Nicole at 10:33 PM
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...
Posted by Nicole at 11:36 AM
Wednesday, December 4, 2013
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!)
Posted by Nicole at 10:13 PM
Monday, December 2, 2013
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 :)
Posted by Nicole at 9:47 PM
Saturday, November 30, 2013
Today, Briella is four days old. She is such a sweety and it is already getting hard leaving her in the hospital! The CPAP was turned off yesterday and she is still getting some extra oxygen via a little cannula under her nose. I've been able to hold her (yay!) and she loves snuggling. Yesterday she cried when I put her down at the end of visiting hours :(
Medically speaking, things are moving along slowly. Briella has been seen by most of the specialists who need to evaluate her and the prognosis seems good. The two things that we are waiting for before we can bring her home (in my understanding) is 1) her breathing needs to improve a bit - she's still having some "insucking" around the rib cage when she breaths, meaning that she's straining a bit. She also has some stridor but chances are she'll have that for a while. I still think that her breathing is stronger than Maddy's was at birth, and the doctor who was looking after Maddy agrees. 2) she is still being fed by the NG tube. She needs to start feeding orally. I'm HOPING that this will start taking place next week.
Apart from that, everything else, I believe, will mostly be done as an outpatient. The ENT is not insisting on an immediate bronchoscopy (unlike our situation with Maddy) and is happy to follow up with that later. Orthopedically, her x-rays of her spine don't completely rule out every issue, however they don't raise any major red flags either so we will be cautious and follow up with that later too. Her hips, like Maddy's, are not fantastic - however unlike Maddy, our current ortho sees no benefit in using a pavlik harness.
Her feet are going to be a difficulty though. Maddy has fantastic feet for her diagnosis and I don't know why, I just assumed that Briella would too. Briella however has the more "typical" diastrophic club feet that often are very difficult to correct. At this stage, our ortho is planning to start serial casting for them when she is around a month old.
Briella is drinking more and more these days and so in the next day or two should be able to have her IV removed - yay for one less cord! We still haven't been given any particular time frame for how long she will be in, but we are praying and keeping our fingers crossed... it is exhausting pumping, looking after two older kids and running back and forth from the hospital sometimes multiple times a day. I can't wait until our family of five is together!
Posted by Nicole at 8:36 PM