Surgery went well yesterday as far as the heart’s concerned. Dr. Reddy (surgeon) was smiling, and if he’s happy, then they were all telling us that means the surgery went well. They also said Jane’s little heart was stronger than they expected.
However, her R lung was bleeding after surgery, and they’ve since been able to stop the bleeding after a few scary moments. But as it is now, they need to get her on blood thinners (aspirin) to prevent clotting in her new shunt, which is a big concern for them right now. If clotting occurs, there’s a new surgery in store for our little warrior.
They are watching her very closely day and night to make sure she’s stable. That means they are taking blood-gas samples hourly, watching her vitals closely (oxygen saturation, urination, blood pressure, and DOZENS more); anything they can do to be on top of an event before it happens. So she has lots of machines monitoring, and tubes connected to her everywhere.
On a good note, her lungs are working rather well, too well in fact. Machines are still breating for her, cuz she’s paralyzed (medically induced) and heavily sedated. BUT, the machines are pumping regular air without additional oxygen or NO.
They’re going to slowly reduce the paralyzing drug to see if she starts breathing a few extra breaths on her own.
God blow that air in her lungs.
A few people asked if blood donations are still needed. The answer is YES. Jane has what she needs for right now, and they won’t send us blood for her all the way up to Northern Cal. But there are other newborns and children at CHOC that do need donators. So if you do have 15 minutes, you’d be helping someone else tremendously. Plus, you’ll get a cookIe.
Jane: post-op is still a bit shaky. Her heart rate is high, kidneys and liver are a concern, and she’s not getting rid of her fluids, so she’s very swollen. Her blood pressure is a bit high also. So tonight they got her back on pain sedatives, because some of these symptoms might indicate discomfort. Probably true, she just had life-saving surgery.
Good news is doctors did warn us of probable instability for first 72 hours after surgery, maybe even longer, since Jane IS very small and very sick. They told us a couple times that she’s one of the most critical, if not THE most critical, out of all 158 youngsters.
But the doctors are world-class, and God’s on our side, and I can take that all the way to the bank.
I’m going to try sleeping now.
Rounds with the Drs this morning was NOT what we were hoping for. Jane’s Dr. has suggested that she is taking steps backwards instead of showing signs of improvement. She said that Jane may be having some other issues with her heart and, in turn, is affecting the function of her liver and other organs. She is having an echocardiogram this morning (heart ultrasound) that will tell the docs what is actually going in with her heart. This will hopefully rule out any further complications (at least that is what I am hoping for). In the meantime, it is urgent that they try to drain the fluids from her body. She has an overload of fluids in her body that can also be causing some of the current problems. They discontinued her pain meds and paralytic yesterday in hopes that she will begin to move a bit, which will also help to reduce the fluid in her body. No movement yet!
My poor baby- this cycle seems never-ending……
***On a better note, I cleaned her up a bit yesterday and gave her a sponge bath. At least while she lays there helpless she can look as cute and clean as possible
So Jane’s R side of heart isn’t being used; surgeons took it out of use the other day. Her L side is doing all the work. Now, there are complications with that.
The thing is, surgery was successful, but everything afterwards has been a complete mess.
So they’re talking about getting Jane on dialysis to reduce her swelling. In the meantime, they’re going to try different diuretics and test out some blood products to jump start those kidneys.
After a HORRIBLE day, Daniel and I were finally able to have a tiny sigh of relief…..Jane finally peed. Her kidneys were showing great signs of failure, but it looks like they might be making a come back. The docs are not planning on changing any meds or treatments for the night. They want to keep her vitals stable and balanced and give her kidneys a chance to recover on their own. Like they keep saying…when Jane is ready to move forward then they will re-evaluate her treatment therapies and consider giving her medications that will help the kidneys.
Jane still hasn’t moved or opened her eyes, yet. Even though they have discontinued the paralytic and sedative she still has major fluid overload which suggests that the meds are hanging out in her body. Once she is able to excrete the extra fluid then the meds will flow out and hopefully she will wake up.
Praying for a restful and healing night for Jane and a better day for me and Daniel tomorrow.
Jane’s peeing, finally. I think I cried when they told us.
So we came to San Francisco for a few hours today, just to get out of the hospital.
Thanks everyone for generosity, support, and prayers. We’re in a unique place in life that we get to see and experience this overwhelming love (seriously!).
After a very nice day roaming around San Francisco and taking a breather from hospital air we came back to the perfect ending… Jane has tripled her amount of urine, her swelling has decreased a tad bit more AND she opened her eyes!!!!! (so of course we stood by at her bedside and talked her ears off as if she was really listening to us)
Today Jane is taking tiny baby steps in a positive direction and we are so grateful! It’s funny how God knows exactly what we can and cannot handle (and he knew we couldnt handle another bad day). The docs continue to focus on getting rid of her fluid volume in hopes that her heart will work more efficiently and then they can start to slowly wean her from her ventilator….little by little, day by day.
The BIG NEWS of today is that Jane gets to have her first few drops of colostrum- aka LIQUID GOLD! She only gets a few drops because she hasnt had to use her gut at all since being born so they start very small to make sure she is able to process and digest it. (You may all be thinking…why on earth am I sharing that she gets her first drops of food?? Well, its because this is major; she is 17 days old and finally gets some goodness!)
***For Michael and Jen- we wish you many, many blessings today as you come before the Lord and dedicate Anna to the One and Only, our Savior. May your day be filled with joy!
Good news for me and Daniel today- a room at Ronnie Mac opened up for us tomorrow. Now we can get settled and not have to live out of suitcases. Yippee!
Here is the address to our home at Ronald McDonald:
Daniel and Elisabeth Siapin
c/o Ronald McDonald House
520 Sand Hill Road
Palo Alto, CA 94304
Our room is great, we really got lucky! They gave us a room with a little kitchenette and dining area. They call it a suite and the suites are usually reserved for other patients, but it was the first available room so we scored big time!! The only downside is that I can see Sprinkles Cupcakes from my window, thats how close it is! Yikes!!