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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