Tuesday, September 24, 2013

A Closed Chest... Yay!

This morning started with a call to Maia's nurse to check how she was doing. The nurse said Maia had a good, restful night and was doing well this morning. Today, we also had a meeting with Dr. Cohen, the surgeon, (aka "the other Gordon"), along with some of the cardiac doctors and nurses, and also the social worker... to discuss the next steps for Maia and to see if we have any questions or issues we'd like to talk about with them.

We arrive to a quiet and peaceful cardiac unit, a rare sight when compared to the last few days! The nurse says Maia's been doing well and resting. Our first glimpse of her today and she looks good, very good! Yesterday, she looked good but a bit tired and sad... but seeing her today we noticed she looked a lot better, and we can also see her bed! There were fewer tubes and lines criss-crossing around her! This sight made us so happy! She was still asleep so we did our best not to disturb her.

Next we had our little meeting with some members of the cardiac team. Dr. Cohen explained that this time around, Maia handled the chest closure extremely well and her blood pressure went up immediately after it was all done, unlike the first time. They also removed 3 of the chest tubes and the cannula (tube) in her thigh that was being used for dialysis. She's on very little medication right now and is tolerating everything, especially the chest closure very well and the doctors are all pleased. For now she will remain on the ECMO heart/lung machine, which is also doing the dialysis. Dr. Cohen says Maia's heart is fine and is actually doing most of the work on her own, so he would like to take her off the heart support in the next few days, and just keep her on the lung support and dialysis. They would like to slowly wean her off the machine little by little, and see how she progresses. This past day has been her best recovery day so far and we're all hoping this continues.

Maia getting some rest

Maia, eyes wide open & checking out what's going on around her

After our meeting with the doctors and nurses, we go back to Maia's room to spend some more time with her. Like always, she seems to recognize Marcus' voice and immediately wakes up and opens her eyes! Marcus says he learned a new song in school today and sings the song to Maia, who can't stop staring at her big brother. Afterwards, she gets a pep talk from mommy and daddy before falling asleep again. Although we know this is just the beginning, we are all so happy to see her doing so well. She's beginning to make some progress in the right direction! It's been a rough 3 weeks and we only hope to move forward from here! 

Marcus serenading Maia

Once again we'd like to say THANK YOU to everyone for their prayers, love, and support... our family is truly grateful and we cannot thank you enough! We are blessed.

Monday, September 23, 2013

Another New Machine...

So the other day, we were introduced to another new machine... It's a heart/lung machine aka "ECMO" (extracorporeal membrane oxygenation) that will help Maia's heart and lungs rest while getting her ready to have her chest closed, hopefully with better results this time! The doctor explained that this machine is usually used for patients in heart failure, but in Maia's case, they are mainly using it to rest her heart, which allows her to be off her heart meds, and will help her kidneys not have to work so hard to flush out all the fluids, all to help shrink her down in preparation to have her chest closed... well, it's working nicely. However, it's quite intimidating to look at! The "circuit" connects at the right side of her neck and uses 2 large plastic tubes that moves her blood to and from the machine. Today she looked tiny and Gordon and I wished they had a machine they could hook us up to so that we can shrink down too!! Of course, this was not without some complications... Maia seems to need attention about a couple of hours before we arrive, almost everyday! It's never anything too serious, but whenever we arrive to see her, we usually have to wait about an hour or so because some procedure needs to be done on her... or there's a bunch of nurses scrambling around her little room figuring out the correct numbers and levels for the machines, and there's just not enough space to visit since all her machines take up so much room! So today, 2 of her lines started leaking because she's been shrinking, the opening for her PIC line in her right thigh has come loose, since the hole doesn't necessarily shrink along with her body. This line in her thigh was being used for dialysis. Same issue with the lines in her neck that connect to the new heart/lung machine. So they decided to not use the line in her thigh altogether and since this new machine can also do dialysis, they will use the same circuit that goes in through her neck for dialysis also, which is good since it's one less machine.

The doctors have also decided to close her chest tonight... again. We're hoping and praying for better results this time! While in the operating room, they will also take her PIC line out of her thigh and allow it to heal up, and fix and clean up the leak at her neck. I called to check up on her tonight and her nurse said they just brought her back to her room about an hour ago and she's doing well. She won't wake up until tomorrow, so I'm getting excited about seeing her! Gordon's been working half days so he gets off work around 12:30pm and Marcus is out of school at 12:20pm... so we'll all head over to the hospital once they're both out.

I don't have any new pics this time, mainly because my phone broke! Booooo! I hate when this happens. I don't even know how it happened, but the other morning when my alarm sounded, I couldn't turn off the alarm! It was around 6:00am so I was barely awake and couldn't see anything, but I felt a thin crack on the screen. Later in the morning I looked at it more closely and noticed a crack that branched out into 3 more cracks... and nothing on the touch screen worked! So I went to Best Buy and talked to the Geek Squad... ended up getting a loaner phone since my phone was on back order. So I'm hoping sometime this week I'll get my phone cuz this loaner phone sucks! For now I guess I can use my regular digital camera, I just have to not be so lazy and upload the pics after I take them!... so we'll see how that goes! For now I just can't wait to see our lil munchkin! 

Thanks again to everyone for their thoughts and prayers! We can't thank you all enough... hoping after this chest closure Maia can move forward in her recovery! She's such a lil fighter and is so strong despite everything she's already been through... we can't wait until she's well enough to meet everyone!

Friday, September 20, 2013

Banana Peel Patch 2.0

Getting a phone call and seeing "UCSF" in the caller ID any time of the day gets our hearts racing! Getting that phone call around midnight is just a lil more nerve racking! That's just what happened when we got a call from Maia's nurse Wednesday night. She called to let us know that the doctors have decided to reopen Maia's chest and it was all happening in a few minutes! They were having difficulty stabilizing her blood pressure and felt the best thing to do was open her chest again. The contraption they had made wasn't enough to raise her blood pressure... so now it feels like we're back to square one!

Banana peel patch 2.0

A couple of hours later, just after 2am, the nurse calls again to let us know that everything went well with no complications, and Maia again has her "banana peel patch" on her chest. I call again later that morning to check to see how she's doing and the nurse says she's doing great, much better than yesterday. She's responding well to getting her chest reopened and she's already opened her eyes and has been looking around. The nurse added that it seems like Maia just wasn't ready to have her chest closed because she's doing great now... which sounds good, but not really, since this is a step backwards in her recovery. Later that day when we arrive to see her, she's a bit swollen again and back on dialysis to help her get rid of fluids... again. For a change, there's not too much activity going on in her room though! She's still somewhat sedated to prevent her from moving around too much but once in a while, she opens her eyes to check out what's going on around her. Maia looks pretty good, considering everything she's been through, which sometimes amazes me because of all the tubes and lines attached to her, and the many times she's been pricked and poked, I just don't expect her to look good... but she's a fighter! The nurses always tell us that she tolerates everything so well and despite everything she's been through, she's still so cute! Of course, we totally agree because her cuteness is so hard to ignore! One of her nurses mentioned that the other nurses fight over her because they all want to be Maia's nurse! Every once in a while we'll see other nurses who've taken care of Maia before, pop into her room to see how she's doing and say hi to us.

Overall, we know that this is just the beginning of our roller coaster ride... there are many more ups and downs to survive! Tomorrow is a new day and a chance to move forward and be grateful for all the things we've been through, both positive and negative. It's sometimes hard to appreciate all the good things in life, but when you've survived so much in such a short amount of time, you learn to appreciate everything, including all the baby steps!... eventually, all the baby steps will add up! This is where we're meant to be now, and we'll get where we need to be sooner or later! God is good!

Tuesday, September 17, 2013

No More Banana Peel Patch...

Maia finally got her chest closed today... but not without a little bit of drama! We arrived in the afternoon around 2pm, only to see her room filled with doctors and nurses, all with masks on. So we say hello and step out of their way and wait in the family lounge down the hall. Every half hour or so we'd go in to check on her but they were still working on her. Gordon did talk to one of the nurses who said they had to "MacGyver" her chest. At this time, I hadn't yet seen what they were describing. Gordon had seen it earlier and said there was string attached to her chest that's hanging from the light above her! We check in again and again, until they ended up closing the entire unit until the procedure was done. Finally, I go in to check if we're able to see her or not and the surgeon, Dr. Cohen, explains that they closed Maia's chest and that now we have to see how she adjusts to it. She did good right after but after a couple of hours, her blood pressure went down and they found that carbon dioxide was starting to collect in her, causing the acidity in her pH to increase. He said they were going to put her on a different breathing machine, one that will get rid of the carbon dioxide.

Maia with her "hanging" contraption
Maia with her new chest tubes

When we finally get a chance to see Maia, it's about 4 hours later and her room is no longer filled with busy doctors and nurses. Things have calmed down and her nurse said that they gave her more blood which made Maia more stable. She's still heavily sedated and I finally see what they were talking about... the nurse tells us that Maia's heart is doing great, but was feeling the pressure of being confined to a smaller area. So to give her heart a little more space, they attached some string to her chest which is tied to the light above her bed to stretch out her chest and give the heart a little more room. It's one of the most interesting things I've ever seen! It almost looks like she's hanging from the light! We also noticed that she was no longer connected to her dialysis machine! She's off of it for now and so far her urine output is good... the doctor said she even peed during the operation! So we're hoping this means her kidneys are working just fine. She also has 2 more drainage tubes attached to her, one on each side of her chest.

After a day of waiting and wondering what was going on, we are relieved to know that Maia is ok. With all the activity surrounding her this afternoon, we really didn't know what to expect... but she really did look good, considering some of the complications she's run into. I told the nurse that Maia was just jealous of all the drama and attention the other babies in the unit were getting, so she just wanted some attention of her own! Although Maia's recovery has been slow with a few little bumps in the road, it's nothing compared to the drama that surrounds us sometimes. Unfortunately, during our stay in the CICU, 2 babies have already passed away. It's very hard to see the families crying and grieving... it's just so sad and reminds us of what we went through when Marissa passed away. But Maia is such a fighter! She's so strong and seems to have a high pain tolerance just like me! We have a long way to go and it seems like bringing her home is still a dream right now... but she's making baby steps in her recovery, and any progress is always a good sign. We are still trying to catch up on sleep, although it feels like I will never be able to catch up! So we continue to take things day by day...

Saturday, September 14, 2013

Slowly Shrinking...

Maia is a little over 2wks old now. She had her surgery at just 4 days old but her chest is still not closed. She was really swollen several days ago and her little kidneys have had some trouble getting rid of all the fluids, so she was put on dialysis to help speed up the process and shrink her down. Unlike dialysis for adults, they will run the dialysis machine continuously because she is too small to handle the amount of fluids in just a few hours. They actually tried to close her chest this past Thursday but the surgeon said she was still too swollen. They explained that when they close her chest, the heart will have less space to function, so any extra fluids will compress the heart and also put more pressure on it... so right now the best thing for Maia is to continue the dialysis and get as much fluid out as possible before closing her chest. At the same time, the doctors don't want to wait too long to close her chest because the risk of infection increases the longer her chest stays open. For right now the goal is to close her chest on Monday, Sept. 16... let's hope and pray this will finally happen, and we can get rid of her "banana peel patch" as Marcus calls it!

Although it's taken her a long time to get rid of all the fluids, Maia is really shrinking before our eyes! We've seen her at her puffiest and now she's almost back to normal. She's very alert and even though she sleeps a lot, she opens her eyes every so often to take a peek and see what's going on. The nurses want to make sure she gets her rest and not have her move around too much, especially since her chest is open and she's connected to so many tubes and wires.. but she's a mover! So I feel bad when she's moving around so much and they have to give her some meds to calm down.

Maia @ 10 days after surgery
Maia @ 2 days post op,
 her most swollen

Maia @ 5 days post op

As for life outside the hospital, we try our best to keep things normal as possible. Marcus is enjoying kindergarten and he now reads bedtime stories to me, instead of me reading to him!! We attended his "Back to School Night" where his teacher was eager to show us his family picture... very impressive! Other parents were also in awe of his drawing. We had to explain about Marissa and Maia, and what was going on in our lives right now... they were all touched and couldn't believe how a 5yr old could express himself in his drawings. 

Maia looking into Daddy's eyes
Gordon on the other hand, is dreading his return to work. He's been off for 3 weeks and that time off has gone by so quickly! He wanted to take some more time off but his boss has been calling and wanting him to work. Since he's been off work, I guess sales and productivity have gone down, and now some of his coworkers are going on vacation leaving his boss somewhat desperate. So as some sort of compromise, Gordon has agreed to work half days, instead of his regular hours. This allows him to spend some time at the hospital with Maia, where both his heart and mind are at all times regardless if he's at the hospital or at work, or any other place. He knows he's going to have to return to work sooner or later... he was just hoping it would be later rather than sooner!!... or if we win the lottery, he won't have to return at all! (Wishful thinking on his part!) I think he's actually more stressed out about his work situation than he is about Maia. But we'll find a way to make it work, we always do!!

Saturday, September 7, 2013

The Beginning of Recovery...

Maia is 9 days old today... she's recovering nicely, improving slowly but surely in "baby steps" with no major setbacks (knock on wood). Her swelling has gone down a lot since surgery and with the help of some diuretics, she is peeing more regularly now. She still has tubes everywhere around her but her feet are tube-free for now. She still has her breathing tube, which we all know she hates, because she's once again trying to get her arms and hands in position to grab it! Since she has a breathing tube, she cannot cry... so the nurses rely on her facial expressions and overall fussiness to determine her comfort level, and adjust her pain meds when necessary. Yesterday, every time she looked at daddy's face, she seemed to cry! I was kind of funny... she'd look around and when her eyes settled and focused on Gordon's face, she made her cry face! I call it her silent cry. They said her voice will be hoarse and raspy when her breathing tube is removed, so her cry will somewhat sound the same... I kind of like this silent cry though! 

Her swelling has gone down and the doctors are waiting for her to shrink and pee a little bit more before closing her chest. So we're hoping that will happen sometime soon, maybe this weekend, so that they can start to wean her off some heart meds... which means less tubes! I also can't wait to have her breathing tube removed so that we can all see her cute little face again! I cannot get used to this tape beard look... not cute at all! Plus her lips get chapped and constantly needs "lipgloss" aka Aquaphor!

Overall she is doing great, just like we expected. I think back and find it hard to believe that she had open heart surgery at only 4 days old! She's expected to be in the hospital for at least another 3-4 weeks, if all goes well with no major complications... so that's what we're hoping for! Sometimes I want to spend more time at the hospital, but there are times her reaction to us is really strong, causing her heart rate to increase... so that's not always a good thing! The more rest she gets the better. So we stay for a few hours, get updates from the nurses and doctors, then leave to continue life outside the hospital. 

Right now, both Gordon and I are slowly catching up on sleep, little by little. I don't think we expected driving back and forth to be so tiring, but at the end of the day, it's worth it. We try to balance our time between home and the hospital, including spending time with Marcus. We actually had a parent-teacher conference with Marcus' kindergarten teacher and he's doing very well so far. His teacher, Mrs. Huie, admired our common sense approach to parenting and suggested we teach some other parents! Gordon says he's going to write a parenting book someday! Ha ha... it should be funny!

For now I'll leave you with a pic of Maia, getting ready for an attempt to grab her breathing tube... I think she waits til we all leave the room!

Maia in pinky up position!
 Also... here is a little video that daddy made!

Tuesday, September 3, 2013

Surgery Day...

Monday, September 2, we arrive at the hospital at 7:30am... Philz Coffee in our hands and big smiles on our faces! We're always eager to see our baby girl! She's sleeping peacefully while her nurses are busy checking her vitals and getting ready to move her and her equipment down to the operating room a few floors down. 

The first to talk to us are the anesthesiologists. They go over in detail about the preparation that's needed before and after surgery. The whole set up for surgery and the post-op process seem to take longer than the actual surgery. Setting up the equipment that's needed and determining what's needed after surgery in terms of meds and other drugs is a gradual process, but they mention that Maia looks good, so they expect her to do just fine!

Next thing we know, we are taking the slow walk with Maia down to the operating room. It kind of felt like we were in a parade walking down the halls! We gave her kisses and "see you laters!" and a short pep talk about being strong before the nurse walked us back up to her room. The nurse went over with us about what she will look like and what to expect after she gets back from surgery. We already knew what to expect after seeing pics of other babies, so we knew about all the tubes and wires and that she would most likely be swollen. So for us it really wasn't that scary.

A few minutes later, we meet the surgeon, Dr. Gordon Cohen. He was very friendly and thorough about discussing the surgery, detailing each step. This Norwood procedure that Maia is having today is the first of the 3-stage surgeries. The next surgery, called the Glenn, will be sometime around 4-6 months, depending on her weight. The following surgery (and hopefully the final one) is the Fontan, which is usually done between 3-5 years old. Although they are transforming her heart, they do not actually go into the heart itself... they rearrange the plumbing that surrounds the heart instead. He explained they will cool down her body and put her on a heart/lung bypass machine, so they can operate without blood flowing through her heart and blood vessels. When the surgery is complete, they will decide whether or not to close her chest, depending on things like swelling and blood pressure. We asked what time might the surgery be done, since we've been getting different answers from everybody! Surgery prep started after 8am so he said around 4pm they should have an update for us. He said to think of it like a baseball game... each game has 9 innings to complete, but the actual length of each game varies. He expects no complications since Maia is in great condition, good health and at a good weight. 

So after thinking about what to do while we wait, we decide to have breakfast at a nearby restaurant called Zazie. We saw it on Yelp and it was highly recommended by the nurses. They had holiday hours and didn't open until 9am so we waited outside for a little bit, along with a growing crowd of people... good sign, as Gordon says. Breakfast was really really good! We'll probably be back there sometime soon! From there we decided to try and go shopping for some things we needed, like a new laundry basket and a lamp. So we go to Tanforan. It's been years since we've been here and it was weird! We didn't find anything so we left. The next thing we knew, we were back home. The nurse suggested we take advantage of this time and get as much sleep as possible... so that's what I did, I took a nice long nap! Gordon decided to work on the car instead. At around 3pm, I decided to call the hospital and check to see if there was any news. They said they tried paging and calling us a little earlier but got no response. For some reason they had Gordon's number, but he never carries his phone, especially if we're together. We weren't sure how they even got his number! Anyway, she said about another hour and they should be wheeling Maia back to her room. So we decided to head over to the hospital, anxious to see our baby girl!

We arrive at the hospital and they're still setting up her equipment in her room, so we wait in the family lounge. After about 20 minutes, the anesthesiologists come in to talk to us with good news... Then the surgeon, Dr. Cohen talks to us and he's very happy how everything went. Maia did really well and the surgery itself was a success. They did have to leave her chest open and will most likely close it in the next few days. It turns out everyone had been searching around the hospital for us since they couldn't get a hold of us! So after waiting for about another 30 minutes, the nurse calls us in to Maia's room... our first glimpse of her and we were pleasantly surprised! She looked really good and hardly swollen. To cover up her open chest, there was a thin piece of material stitched to her skin, which was then covered with a tape-like plastic covering soaked in antibiotics. Although the material isn't clear, you can actually see her heart beating against it! It was kind of freaky to look at, but I couldn't stop looking at it!! She was sleeping of course so she just lay there peacefully, nice and relaxed. They don't expect her to wake up until sometime tomorrow and the longer she sleeps, the better because she needs to rest as much as she can. So after making sure she was good for the night, we leave her with her nurses... these nurses are very good, so we know she's in good hands.

We're back the next day, along with Marcus, to see how Maia is recovering. We go to her bedside and she still looks out of it... until she hears our voices!! She starts opening her eyes and starts to move around, but her heart rate goes up, so we kind of felt bad. Gordon and Marcus sit down and leave me alone at the bedside. She tries really hard again to open her eyes! I feel like I might be a distraction, so I stand at the other side of the bed where she can't see me and just rub that beautiful head of hair, hoping she'd go back to sleep. She's getting more fluids and is on pain meds, so she's looking a little more puffy today. They expect her to be at her puffiest the next day, before the swelling starts to go down. For now, we're happy she looks good. We are worried that the more she wakes up, she'll probably feel the pain more because she's always trying to move around, which is not always a good thing, considering she now has more tubes connected to her and her chest is still open. Plus, she has her favorite breathing tube back in her mouth! So we're sure she's hating it already! But she's recovering nicely, taking all the necessary baby steps toward recovery. I didn't want to post any post-op pics since it may be a bit disturbing for some people if you don't know what to expect... but I decided to just go ahead and put up pics for those that are curious. So for those that have never seen a baby come out of open heart surgery at 4 days old, here is your chance... I think you'll be ok!

Maia after her first open heart surgery

A close up of Maia's (open) chest
A sign for Maia's hospital bed (By Marcus)

Sunday, September 1, 2013

Getting Ready For Surgery...

While in the NICU, big brother Marcus got to see Maia for the first time! He was so excited to dress up in his Dr. Marcus outfit and walk around the hospital! He was not intimidated by all the beeping instruments, wires and tubes. Instead, he constantly asked questions about everything, wanting to know how things worked and what they were for. The next thing we know, all the nurses are waiting to meet him!

Dr. Marcus "Ouchie Specialist"
Dr. Marcus checking out Maia

Dr. Marcus checking on his patient

Maia with her tape beard holding down the breathing tube

After a couple of days in the NICU, Maia is moved to the Pediatric Cardiac Intensive Care Unit, which is where she will spend most of her time before and after her surgery. Her first surgery is scheduled for Monday, September 2, which happens to be Labor Day. So for now we're just enjoying our time with her. She got her breathing tube removed so we got to see her face up close and personal for the first time... she's had a breathing tube since birth so we really haven't seen face yet until today! Maia also does not like the breathing tube at all. First it was taped down to her face "mustache style" and we noticed she would try to sneak her hand up and try to grab it, so the nurse had to keep tucking her hands by her side so she wouldn't mess with the tube! The day she had it removed and we came to see her, it was taped down even more onto her face with a "full beard" of tape! But that didn't seem to stop her because the tape on her cheeks were just hanging there after several of her attempts to take it off! She now needs another manicure because her fast growing nails are now all jagged from trying to remove the tape off her face! So she's a strong and feisty baby girl, a good sign going into surgery!

Maia staring into the camera
Maia, looking kind of pissed


I also got the bonus prize of getting to hold her for the first time... finally! She's still hooked up to tubes and wires so we couldn't go very far, but we rocked in the rocking chair together for a good hour or so... it was such a nice feeling! By the way, that thing on her forehead is an oxygen sensor. She didn't seem to mind having that on her face, not like the the breathing tube!

We also talked to the surgical assistant who will be helping out with Maia's surgery. After all the tests and echos, it turns out that Maia's diagnosis is actually a combination of both previous diagnosis. She has the Double Outlet Right Ventricle, the Coarctation of the Aorta, a VSD, and also Hypoplastic Left Heart Syndrome... her left ventricle is still too small to function on its own so Maia will have the 3 stage surgeries in the future to transform her heart into a single ventricle. So after going over the details of the surgery, including benefits and risks, and signing consent forms... surgery was all set for Monday morning. They told us to be there around 7:30am...