Home again, home again

As anticipated, we got to bring Sophia home yesterday. While at the hospital we transitioned her to breastmilk which has made a world of difference. Her digestive tract is working much better and she hasn't thrown up at all (which I think is what caused her to aspirate in the first place). Now we are just hunkering down and preparing for a wonderful Christmas. Happy Holidays to everybody. We love you!

Here we are again

So, we are back in the hospital :(. Sophia wasn't quite acting right on Sunday and sure enough that night she got another temperature. We took her to the ER at Memorial (where I work) and they then transported her by ambulance back to UCSF. The whole ordeal was pretty traumatic. The moment we got back up to the floor where we had spent so much time, I lost it. It's really like reliving a nightmare. Hopefully, this time the nightmare will be shorter. She has aspiration pneumonia again and after a few days of IV antibiotics, she is on the mend. There is buzz about us leaving as early as Friday. The most frustrating part of this all is that we did everything we could at home to prevent this from happening. Because of the Down Syndrome, Sophia has low muscle tone everywhere. This includes the sphincter that is supposed to keep stomach acid down, so unfortunately, I'm not sure if this is entirely preventable. Other than this, she is doing very well. She is moving around more, trying to grab at toys, and getting bigger. She is now able to be given breast milk through her G tube instead on Monogen, so I think that will help with her stomach issues. We are shooting to be out of here by the end of this week, take her home, and continue with the wonderful time we were having!

Finally Home!

Sorry for the delayed update, we have been busy, busy, busy! Sophia came home finally on December 5th. We are all beyond thrilled to finally be together as a family, and just in time for Christmas. We have been working on getting a schedule together that works for us because our little one still needs quite a bit of medical care. Will has taken to his sister better than expected. He gives her multiple "butterfly" kisses a day, but you have to watch him closely because he'll try to sneak a pinch or two in every one and a while. Sophia is doing wonderfully. We took her to the doctor on Wed and she had already gained over a pound since she left the hospital. This was so great to hear because it made me feel like we were doing a good job! I feel an enormous amount of stress being a nurse and caring for my own child, but everyday gets better. For right now, we are just enjoying our time together and focusing on staying healthy and happy. Thanks to everybody again for everything, you are all part of our happiness!

Another Curveball

So, Sophia was supposed to come home on Tuesday. After cleaning like crazy, detailing the car, and bathing the house in Lysol, she got another temperature on Tuesday morning. Such a bummer! Turns out she has what is called aspiration pneumonia. They think that she aspirated a small amount of her tube feedings into her lungs causing pneumonia. They started her on antibiotics right away and she hasn't had a temperature since. Before all of this she was doing really well, she was even taking in a little bit of breast milk by mouth. We have been working with OT to teach Sophia how to eat properly so that eventually she can not be fed through her G tube. It's a lot more work than I ever expected! Because she still has a bad heart, she gets worn out so quickly and it's really hard for her to breathe, suck, and swallow all at the same time. A majority of her food still needs to be Monogen, so we will have her on continuous tube feedings over night from 8-8 and then she gets three bolus feeds during the day. We try to give her a little breast milk by mouth and then whatever volume she still needs is supplemented with more Monogen. We are now just trying to get her back on track and hopefully after her antibiotics finish she can come home. We are hoping as soon as Tuesday!

We're moving on up! Sophia is out of the ICU and in a step-down unit, one step closer to coming home. Right now she is getting a brain MRI so they can try to determine the cause of her brain bleeding, which is important to know especially for the next heart surgery. The NP told me today that they want her to get a cardiac cath in 2 months to assess when the next surgery will be. She is not growing into the pulmonary band like they wated her to, so it may be sooner rather than later. Besides that, Sophia is doing wonderfully. We are trying to work on her feeding and transitioning her into oral feeds. The NP even mentioned maybe trying some breast milk soon, which would be wonderful. She has been so responsive and playful recently which is wonderful to see. It's amazing to me how she can still grow and thrive after everything that she has been through. Right now I am just hoping that the MRI results are ok and that will be one less thing to worry about. More pictures soon!

Cautiously Optimistic

So they are holding off on the neurosurgery! All of the doctors had a meeting and decided that she was stable enough to hold off on the shunt. I haven't gotten the full story first hand because Mike has been down with Sophia the past few days, but from what he says they are going to keep following her and see what happens. This of course means that we may be able to bring her home sooner rather than later. Having her at home is such an exciting and scary prospect. We have gotten so used to being in the ICU with monitors, nurses, and doctors being right there that being away from that is going to be somewhat frightening. But being all together in the same room with both of our children makes my heart want to burst! We will learn more in the next few days as to what the next step is, but this is wonderful news! Thanks again to everyone for your continued support. We love you all!

Sorry everyone for the late update! Sophia did not have her surgery on Friday, they wanted to wait and give her a 7 day course of antibiotics. She tested positive for rotavirus which is basically like a bad stomach bug. She did spike another temp yesterday, but besides that she seems to be feeling much better. She is tentatively scheduled for Wednesday. She will get another head ultrasound and a brain MRI on Monday and they will make their final decision (we've heard that one before). For now, we are just enjoying our time with the little one. She is becoming so much more playful and interactive. I have also started "Baby Bootcamp" with her. It sounds a whole lot worse than it actually is! The Occupational Therapist just gave us some suggestions on things to work on, like different positioning, bringing her hands to her mouth (which she sometimes does on her own), stuff like that. I have also been trying to give her tummy time while I can, which she pretty much hates! Everything that they are doing for her right now I could do at home, so if she doesn't need the shunt, home may be on the horizon for her. I'm not getting my hopes up, but I do keep it in the back of my mind!

So, Sophia spiked a temperature again. Of course this means that her surgery will be delayed. The neurosurgeons came in this morning and told Mike that she would definitely need the surgery and said that they would try to do it on Friday. The pediatric surgeons who did her last surgery will be there to help guide the shunt into the peritoneal space since she just recently was operated on around that area. I think she is feeling pretty crappy right now. She is really sleepy and is having lots of diarrhea. I just really hope that it is nothing serious. With everything that is going around and with how susceptible she is, I am scared to death that she will catch something bad. They are running lots of tests to see what the source of the fever is, so we will see. Just keep your fingers crossed that she will bounce back from this and they will be able to operate on Friday.

Let's see if I can give a quick update before my cab comes! Sophia is slated for neurosurgery on Tuesday, but they won't know if she really needs it until Monday. She is kind of teetering on the edge where her brain is swelling enough to cause concern, but not enough to do anything about it yet. The surgeons say that it is much easier than the other surgeries she has had. I'm thinking brain surgery would be harder, but apparently not. Of course I don't want her to have another surgery, but part of me just wants to get it done if it's going to be a problem in the future. The recovery time is supposed to be much quicker.
Sophia passed her swallow study to make sure she could swallow without aspirating, but is having problems figuring out how to breath with a full belly, so is still being fed through her G tube. They have to give her this nasty tasting stuff called Monogen they has pre-digested fat in it, so maybe it's better that she can't taste it! Besides that, she is starting to find her fingers which is really cute. She puts her hands together and then puts them in her mouth. I can't believe that she is almost two months old already. I feel like she is turning into a real baby!

After a couple of set backs, Sophia is on track again. They tried to feed her through her G tube a few days ago and had to stop it soon after because her tube was leaking. They think that it just takes her longer to heal (surprise, surprise) and they are going to try again tomorrow. Keep your fingers crossed because I think that the small amount of food she did get really helped her. She also spiked another temp and collapsed her left lung. All of which has been remedied and she is back on the upswing. The doctors where going to try to send her out of the ICU before all of this happened, so we'll see what the next few days bring.

Will got to touch Sophia for the first time and in true big brother fashion, poked her eye and tried to steal her bink! Thankfully, she didn't seem to mind it all that much. We had a great night trick-o-treating with the Goddens, but it was bittersweet because we had one person missing. We are just hope hope hoping that the next few weeks go well and we can bring her home. I don't really know what the next step is, but I'm sure it will be exciting!

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.

Day #12

So we've hit a little bump in the road. Today Sophia spiked a temperature. Now they are trying to figure out where the infection is coming from. We didn't go and see her today because Will has been under the weather and we didn't want to pass anything on to her. So this has probably been the hardest part of the process, holding ourselves back from her. We are trying to do the right thing but it is nearly impossible. The last time that I talked to the nurse, she said that her temperature had gone down a little bit and she was resting comfortably. They were also giving her a medicine called IVIG to boost her immune system. Needless to say we are pretty scared and hope that this infection clears quickly. I plan to talk to the doctors in the morning to get a better picture of what is going on. The nurses say that she loves her pacifier and that they can hear her sucking all the way across the hall! I'm starting to really enjoy blogging, so hopefully you all won't get sick of me!

Post op day #11

Sophia continues to do well! Today she got one of her chest tubes out and the other two seem to be draining less. She has lost all of the excess fluid and then some, she is one tiny girl! Now that the breathing tube is out of her mouth she is loving her pacifier. It takes her a while to figure out how to suck on the pacifier while she still has the gastric tube down her throat, but she is pretty determined and eventually she finds a way. The poor thing wants to eat so badly. When she is ready there is a whole freezer full of milk waiting! My mom sat with Sophia this morning while I took care of Will who has been sick too (thanks mom) so I didn't get to spend as much time with her today as I usually do. I know that she has the best babysitters watching over her, but I still miss her like crazy. I will post pictures tomorrow so you all can see how far she has come. Love you all!

Sophia post op day 10

Hello again! Thank you to Jess for setting up this blog. I am trying to figure it out, so I hope I’m doing it right! Sophia had a great day today. After a few days of stalled progress, they finally took out her breathing tube this morning. She was so ready to have it out that she tried to help the doctor by pulling it out herself! She was wide awake for a few hours while I was there and she even cried a little. It was the first time I actually heard her cry. She doesn’t seem to be in much pain anymore, just uncomfortable. She is off of all of her cardiac drips (she had been on five) and so now she is just getting nutrition through her IV. She still has three chest tubes that are draining quite a bit, so the next step will be to take those out once they are draining less. Sophia is also wildly popular! Everyone loves her. Many of the nurses and doctors come to check on her even when they don’t have to. Everyone seems to have taken a special interest in her because she is such a special girl! Mike and I have been reading some about babies with Down Syndrome and are realizing how important early intervention and stimulation are. We are trying to talk and touch her as much as possible and there is always music playing in her room when we’re not there. She also has a black and white mobile that she seems to really enjoy. We are counting down the days until we can hold her and eventually take her home. Not being able to console her properly when she is upset is really painful for us. This whole experience is getting really tiring, but everytime I get really mad I just think about what Sophia is going through. I keep having daydreams about our lives with Sophia at home, with Will as a big brother and Sophia dressed in some cute, pink outfit. We can’t wait for everyone to meet her! I am going to try to upload some pictures on the blog next. Thanks again to everyone for everything! We love you all!

Sophia Updates

Hey everyone, just a quick update before I get kicked off the computer.

Sophia had her first open heart surgery on Wed. The first 16 or so hours were really stressful and scary as her body adjusted to the changes in her heart. The doctors and nurses worked all night making sure she was safe and eventually stable.

Today she is doing very well. She has been opening her eyes and looking all around trying to figure out what the heck just happened to her. They are weaning her off of her first of many medicines to eventually have her heart work on its own. She is trying to breath by herself around the ventillator and they have been encouraged by her progress. I expect a couple more bumps in the road, hopefully nothing too serious though.

The nurse and I gave her a hairdo this morning  with a little bow. Now she doesn't look quite as much like Will!

I will try to send some pictures ASAP as soon as I can pull myself away from the hospital.

Love you all!

Rae

Sophia

Hello again everybody,

Sorry it has taken me so long with the updates, I was just able to get internet access.

Sophia Victoria was born on Sept 11th at 10:33. She was 6lbs 4oz and 21.5in long. She is long and skinny with big feet just like her daddy. She is absolutely beautiful with a big head of dark brown hair and looks a lot like Will did (except prettier of course).

She spent her first couple of days in the NICU where she did very well. She is now in the Cardiac ICU so they can get to know her better before her surgery. She is scheduled for her first surgery tomorrow morning at 8:00.

Initally they thought they could do the surgery through her side but now they have decided to perform open heart for a couple of reasons. It is easier to get to the aorta for one and also they are going to do an additional procedure called a pulmonary banding. This will make her heart work better while she waits for the second open heart and it will also help blood flow to her abdomen which will help when she has her belly surgery. A lot of information. It has been kind of overwhelming as each day we find out new news. We are anxious and scared to get this long process going.

She is such a trooper and an amazing little girl. I can't explain to you all how beautiful she is. Thank you so much to everybody for all of your encouraging thoughts, prayers, emails, everything. We love you all very much and Sophia is lucky to have such amazing family and friends in her corner.

Love,

Mike, Rae, and Will

Baby Girl Mallers

Family and Friends,

As some of you may know I have had problems with extra amniotic fluid during this pregnancy, especially in the past few weeks. Last Wednesday my OB sent me for an ultrasound to find out why. The radiologist found some areas of concern and so we were sent down to UCSF on Thursday of last week. After meeting with multiple doctors and getting more extensive tests there are some things that we are sure of and some things that are still speculation at this point.

One of the things we know for sure is that the reason I have so much extra fluid is because the baby has what is called Duodenal Atresia (the first part of her small bowel is blocked) and she is not able to swallow any of the fluid which causes it to back up it my uterus. We also know that she has a few congenital heart defects. The first one is called Aortic Coarctation and is basically a narrowing of her aorta (the major blood vessel leaving the heart). The second one is a called Atrioventricular Canal Defect and is really two different issues. She only has one heart valve instead of two and her septum (the wall between the two ventricles) is not fully developed.

Because of these physical problems our little Sophia will need a series of operations. One will be to fix the aorta. For this surgery they are able to go in through her side instead of her chest. The second one will fix her intestine so she will be able to take in nutrition.  The doctors will perform an echocardiogram at birth to determine which surgery to perform first. Finally, the third surgery will be open heart and will happen when she is 3-6 months old.

We do have some encouraging news. The cardiologist said that her one valve is working very well as she has a stable and normal heartbeat. And I can vouche for the fact that she is very active and swims around like a champ!

The speculation is the cause of these congenital defects. We have been told that they may or may not be caused by a chromosomal abnormality. We chose to not get the amniocentesis  to verify either way.

They are going to induce labor at UCSF on the 10th. We are more than confident with the competency of the staff at UCSF and feel very lucky to have such an amazingly talented team of doctors working with us. After meeting with the neonatologist today we were told that our expected stay in the NICU could be up to a few weeks.

We are coping fairly well with this news and are determined to keep a positive attitude for ourselves, Will, and Sophia. We are finding strength in ourselves and each other that we never knew existed and for that we are thankful. We truly feel blessed to be having such a strong and special baby girl.

We also feel blessed to have such amazing friends and family. We are asking for your positive thoughts, prayers, and energy in the next couple of weeks, especially on the 10th and the days following.

We will try to keep you posted as well as we can. Thank you all for being a part of our lives.

With love,

Mike, Rae, Will and Sophia

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