Rollercoaster

Today is a great day! Sophia is being extubated right now and I was too nervous to watch, so I'm down here writing. Sophia has been awake most of the day, looking around and playing. Will talked to her on the phone this morning which was probably the cutest thing I've ever seen. She seems to love hearing his voice so I recorded him talking and play it for her when she is awake. She looks around and is probably thinking, "where is my crazy brother that I heard for 9 months, I wanna see him!". They also tested her bowel this morning to see if the anastamosis site was still connected. The unofficial report (which was the nurse overhearing the doctors) was that everything is working fine and they will try to start feeding her soon. Unfortunately because the chylothorax is aggravated by fat intake, she won't be able to have breast milk for a while. But that is ok with me as long as she gets something. Things are looking up again!

Long haul

Sophia, Sophia, Sophia. Little Miss Mallers is causing problems again! This is all a little confusing to me, but I'll try to explain what is going on. Sophia has a build up of fluid in her lungs again called a chylothorax. The fluid comes from her lymphatic system leaking in response to trauma. It is not only leaking in her lungs, but also in her neck and face (they don't really know why it is going there). So basically, she can't come off of the ventilator because there is too much fluid in her lungs right now. They are going to give her one more day to try to correct herself and if she doesn't make progress, they will have to put chest tubes back in. The doctors don't think that it is anything too serious and it's just another set back. So, from the sound of things, we're going to be here a while longer. The good news is that the swelling in her brain has stabilized and they are not 100% sure that she will need a shunt and if she does then it may not have to be permanent. This is very good news, but I've learned to not get too excited until I know for sure. So for now we are just waiting.

Sophia just a few hours after her belly surgery.

Will at the Ronald McDonald House being funny!

It's tough being this cute!

2 down, 2 to go

Sophia had her abdominal surgery yesterday and did an amazing job. The surgeons were able to fix her stomach and intestines with no complications. They also put in a tube that goes straight into her stomach so that if she has problems eating or swallowing then they can feed her through it. If she can eat ok, then the tube comes out and she won't need it again.
Sophia woke up fairly soon after surgery and right away started sucking on the ventilator tube. She is SO ready to eat. They took out the OG tube that had been in her mouth since birth so once she is extubated we can finally see her whole face without stickers or tubes! She was doing so well that they just tried to take her off of the ventilator about an hour ago. Unfortunately, she wasn't able to tolerate it. They think that maybe as they were taking out the tube that a secretion got caught in her airway, or maybe the swelling of her abdomen put too much pressure on her lungs. Either way, they had to intubate her again and put her back to sleep for a while. Nothing is ever easy with this kid! She is definitely giving us all, the doctors and nurses included, a run for our money. The good news is that they did another head ultrasound and the swelling is still stable and also that they surgery went well. This is one giant step in the right direction.

Pretty good week

All and all, this has been a pretty good week. Sophia is scheduled for her next surgery on Monday (thank goodness). Dr. Azakie (the cardio-thoracic surgeon) is letting the other surgeons use his OR on Monday for Sophia so that she can have the anesthesiologists, who specialize in cardiac kids and know her already, put her to sleep. They seem to really be looking out for her which gives us a lot of comfort. Also, she has had 2 more head ultrasounds and the swelling in her brain has stayed stable. The neurosurgeons say that she will probably still need a VP shunt after her next surgery to relieve the swelling, but it is a really good thing that it's not getting any worse at this point. Right now Sophia is doing so well that they are actually moving her out of the ICU and into a step-down unit for the weekend. After her surgery she will go back to the Cardiac ICU for a day or so and then back up to the NICU where they are more familiar with the duodenal surgery.
After being able to stay at John and Nan's wonderful apartment in Russian Hill for so long, we are also moving. We were able to get a room at the Ronald McDonald House for the deration of Sophia's hospital stay. This has all worked out perfectly for us and we are very thankful for the generousity. I am going to go check out Sophia's new digs, so thank you again to everybody for your continued thoughts, love, and kind words. We really couldn't be doing this without you!

Sophia is 4 weeks old today. What a long 4 weeks it has been! We have some good news and some not so good news. I'll start with the not so good news. After her surgery, Sophia bled a little bit into the ventricles of her brain. This bleed was classified as a Grade 2 Intraventricular Hemorrhage. The doctors weren't too concerned about it at the time and it didn't cause any damage. However, now the old blood in the ventricles is causing a "backup" of cerebral spinal fluid into her brain and basically causing the brain to swell some. As of now, we are basically watching and waiting. The neurosurgeons don't think that the swelling is bad enough yet to intervene. If the swelling gets worse, then the common treatment is putting a shunt in the brain that drains the fluid into the abdominal space. Obviously we are hoping and praying that this won't happen. Neurologically Sophia seems to be doing ok. For the past couple of days she has been pretty sleepy and has had abnormal movement in her eyes, which could or could not be a result of the added pressure in her head. The good news is that this morning Sophia was wide awake and feisty for a really long time and the abnormal eye movements have decreased. The neurologists said that this was a good sign. Also, this shouldn't postpone her second surgery any. Right now she is getting a CT of her lungs and chest to start gathering data so that she can safely have her abdominal surgery. The hard part is the uncertainty. Nobody can really tell us how bad the swelling will get before it gets better or if she will suffer any permanent damage. She seems to be holding her own now, but who knows what the next couple of days or weeks will bring. I am just really sorry for her. The poor little girl is just getting hit over and over with these crazy complications. This is what her entire life has been so far and it doesn't really seem fair. I just can't wait to get her home and show her that it's better than this. She is still insanely cute and petite (she barely weighs 5lbs) and loves to be held. The nurses have been great and sometimes hold her at night when we're not there. This is just another little set back that she will get over and in a couple of months I'm sure she will be dazziling us all!

Totally wiped out after her bath, but loving her new stuffed frog/pacifier holder!

October 4th, bath time!

October 2nd, blowing bubbles!

September 28th

September 27th, much, much smaller.

September 26th, loosing weight and breathing on her own!

September 23rd, waking up and looking cute with her new pink bow!

September 18th, 2 days after surgery. She was so, so puffy!

Baby feet!

September 12th

September 11th, just a couple of hours after Sophia was born

Lots of progress

A lot has happened in the past few days! Overall, Sophia is doing much better. The doctors still haven't totally figured out where her fevers came from. They said that it was probably a "transient bacteria" of some sort. Still, she is going to get a CT of her chest in the next couple of days to check her lungs and to look at her incision from inside to make sure that it is ok. Sophia's last chest tube came out yesterday even though it was still draining a little too much. The doctors are hoping that she will absorb the extra fluid and that it won't accumulate in her lungs again. If it does then they may have to reinsert the tube, but her chest X-ray looked good today! She is just loosing lines left and right. Today they took out her arterial line and totally weaned her off of her oxygen. If everything goes well over the next couple of days then the surgeons are going to come in on Friday and start talking about her next surgery. Sophia has been more awake the past couple of days and we are finally able to hold her. I'm addicted. She is just the sweetest thing ever. One of the nurses and I gave her a bath the other day and we actually put clothes on her, her first fashion experience! One of the other nurses bought her a little stuffed frog with a pacifier attached to it so that it stays in her mouth easier. So cute. The more she is awake, the more she wants to suck! We are slowly but surely moving forward. I'm hoping to have Sophia home by Halloween and am looking for a Wonder Women or Supergirl costume online, because that is what she is!

Post op day #15

Whew, what a day! Sophia had a fairly uneventful couple of days up until this afternoon. After being super fussy for a couple of hours, she spiked another temperature. I had a feeling that it was coming because she was pretty much inconsolable. Initially they thought that the infection was coming from her arterial line, now they are thinking that her wound is infected. The poor thing got swabbed and poked in a million different places to see if she is infected anywhere else. The top of her incision is open in two different places and is draining slightly. I know, pretty gross. They've changed around her antibiotics to cover a broad spectrum of bugs. I am confident that she will get over this, but it just means a huge delay in her next surgery. Yesterday the doctors told me that they had to wait 5 days after taking her chest tubes out to do the duodenal repair. With her chest tube drainage slowing down I thought that we were finally getting closer. Now I have no idea how long it is going to be. This is so incredibly frustrating. She needs better nutrition to gain weight (she still weighs under 7 lbs) and to heal her wound, but she can't eat until after this second surgery. I can't believe everything she is going through, I just feel so bad for her. I don't know what else to do besides love her and be there for her and remind myself that she will never remember any of this. I just keep telling myself that one day soon this will all be a distant memory.