Tuesday, October 29, 2013

2 Months Old...

Today Maia turns 2 months old today!!! Hard to believe I gave birth to this feisty bundle of joy 2 months ago already! Although she's still in the hospital, we are all so happy to have her in our lives. She has brought so much joy to us... and also everyone around her, especially the nurses.

I'm also happy to report that this past week has been very good for our baby girl! She has been very stable with no complications (KNOCK ON WOOD!). Most of her week was spent resting and relaxing, all while taking those very important baby steps! Maia has been on 3 heart meds, epinephrine, dopamine, and milrinone. She was taken off epinephrine over a week ago, and taken off dopamine a few days ago after an echo was done to check on her heart. One of her cardiologists, Dr. Robertson said her heart looked great, especially the way it squeezed! Sounds funny, but squeezing plays such a big part in the way your heart functions. Maia's heart was doing well including the repaired aortic arch. I got the chance to watch the echo being done... and I had no idea what was going on! I thought I was familiar with the way the heart looked, after having so many echos done while I was pregnant, but after Maia's first heart surgery, I really couldn't identify anything!! So even after the doctor pointed things out to me, I wasn't seeing what she was seeing so I just smiled! Ha ha! But I could tell by the look on her face that she was very happy to see Maia's heart working so well! 

Maia napping with her friends Otto & Ducky.
Wide awake with her double binky.

Maia's renal (kidney) doctors have also started talking about adjusting her dialysis since she's beginning to pee more regularly now. They are still giving her Lasix to help her produce more urine but they would like her kidneys to take on more of the work, and not rely too much on the dialysis. The doctors are still "talking about it" which means they  might start this anytime from a few hours, to a few weeks. So who knows when they'll try to start weening her off dialysis! But we're patient, no need to rush anything... if the time isn't right then we can wait!

The view from Maia's window.
Maia also has a new room! After her surgery to put in a Broviac catheter to access a central vein, Maia was moved into a bigger room... a room with a view! I don't think she can appreciate the beautiful view of San Francisco and the Golden Gate Bridge just yet, but now she can see some blue skies or some of that infamous fog! We're hoping a change of scenery will help her forward progress and keep her moving in the right direction. Plus, it's not only good for Maia to have a different view, because we all like looking outside the big window... when it's not foggy!

Meanwhile, back at home....

We're still somewhat trying to adjust to a different schedule with Gordon having to return to work full-time. Lately I've been going to the hospital by myself in the mornings on Mondays, Wednesdays, and Fridays. On Tuesdays I wait until Gordon comes home from work and we go together for a late night visit. Thursdays, Gordon works half days so that we can attend our weekly meeting with Maia's team of doctors and nurses. He also tries to visit after work by himself sometimes despite being tired and driving through traffic. So we're really trying to make an effort for at least one of us to be there at the hospital to spend some time with Maia. We feel it's good for her to see us and know we're there, especially since Maia's nurses mentioned that she really responds to people interacting with her at her bedside. Maia seems to be a people person as opposed to some babies that don't like to be touched or disturbed, so this makes us want to be around her even more. On the other hand, big brother Marcus is beginning to feel left out... he's been asking why we have to go to the hospital all the time. So we've told him that it's because Maia is sick, and if anybody else were sick, like himself, we would do the same thing and try to visit as much as we could. We've also been trying to spend more time with him, which is one of the reasons I've been going visit Maia in the mornings while Marcus is at school, so my afternoons are free to spend with him. This past Saturday, while I did a Dirty Girl Mud Run with my girlfriends, Gordon and Marcus had some father-son time at Dave & Busters. Aside from playing games, they were able to spend some quality time together and talk about Maia being in the hospital, and how he feels about it. By having a day with daddy all to himself, hopefully he can feel that he's still important and that we didn't forget about him! Fortunately for us, he's one of those kids that adapts well to change! We also take him with us to hospital only once or twice a week and ask him beforehand if he wants to go, and not always force him to go. So it's been a challenge trying to balance our family life. We want to be there for Maia at the hospital and also be there for Marcus and keep things normal for him at home. We're still trying to figure things out... but as long as family comes first, we're willing to do whatever it takes.

Marcus being silly and posing for the camera.

Thursday, October 24, 2013

Back to the Operating Room...

Thursday morning I was kind of dreading the meeting with Maia's team of doctors and nurses. Mainly because this past week has not been very good for lil Miss Maia. It's been a hard week for her... she had a exploratory lapartomy on Saturday to find out where and why blood was coming out of her dialysis catheter, which put her dialysis on hold to give her tummy some time to recover. So she's been swollen and puffy the last several days. Then Wednesday the pediatric surgeon had to access a vein in her neck so that a central line (special IV that connects to a large vein close to the heart) could be put in. Maia's PICC line had come out a couple of days ago and she really had no other place for any sort of IV that has multiple ports to carry larger volumes of fluid for a longer period of time. That's twice in one week Maia has had to go down to the operating room for something! So I know these things will be discussed among other things. As always, we're hoping for the best!

Maia with her otter friend. She looks annoyed that I'm taking her pic again!

This week's meeting ended up better than I expected... it was short, and a little sweeter than last week's. I think because they all know that we understand how seriously sick Maia is, there was no need to keep emphasizing that fact. We discussed this past week's events, including the exploratory laparotomy to stop the bleeding in her abdomen. The surgeon was able find the source of the bleeding and stop it right away, and this was the best result they could ask for. We also talked about having to get access for a central line. This needed to be done surgically since the other pathways from her arms and legs had already been used. This operation was also successful, and they believe that they'll be able to use this central line for a long time, as long as she needs it. Maia also started the peritoneal dialysis again. Her cycles last for 1 hour and she is receiving about half the fluids as before, mainly because they don't want to put too much pressure on her abdomen and the incision, which is still healing. Also, her kidneys continue to make urine, and the volume is slowly starting to increase, along with help from some Lasix, a diuretic. Unfortunately, these procedures are setbacks in her recovery. Although Maia seems to be able to tolerate anything and everything that's been done to her, I'm not sure how that all plays into her overall prognosis. I do know one thing, Maia continues to fight every day! Overall, everyone is pleased to see Maia tolerate all these procedures and take baby steps in the right direction. Eventually, all these baby steps will add up. The analogy the doctor used today was to picture Maia's recovery as flights of stairs going up to the top of a tall building. As she continues taking steps upward, her setbacks take her back down an entire floor. So some of the progress that she's made is wiped away and she must start over again. But when you look at Maia, she doesn't seem to mind. She finds the strength to continue on, which impresses everyone, including us! It seems like every time the doctors are unsure of how she'll recover from each setback, she finds the strength to show them all that she's a fighter that refuses to back down!  

Monday, October 21, 2013

Hanging In There...

Maia had been stable these past few days, but on Saturday she ran into another bump on her road to recovery. A few days after successfully removing the blockage from her dialysis catheter, blood started to come out from her stomach and into the tube. When we arrived for our daily visit, the nurse had disconnected the catheter and capped it off, so the dialysis was put on hold for the time being, until the bleeding stopped. Fortunately, Maia's vitals and blood gases seemed to be unaffected by this and she remained her attentive self. After a few hours, one of the pediatric surgeons came by to talk to us. They had been discussing the best options to stop the bleeding and figure out where it was coming from. They had hoped that flushing out the catheter would help, but blood continued to fill the tube. So they decided that it was best to bring Maia down to the operating room to have exploratory surgery on her abdomen. Their hope was to quickly find the origin of the bleeding and fix it. Worst case scenario would be to find that a large or major part of her was somehow damaged... but they wouldn't know anything until they open her up and take a look. So once again we were faced with another setback and several hours of worry.

Thank goodness we know how to keep ourselves busy! Saturday happened to be Lexi's 1st birthday party. Lexi is the daughter of my cousin Mark and his wife, Karen. So we had ourselves a perfect distraction... kind of. It was a costume party and Gordon went as Superman, I dressed up as Wonder Woman, and Marcus was Spiderman. While Marcus had a blast, Gordon and I tried to relax and not worry so much... it didn't work! We constantly checked the time on the phone as we anxiously waited for the doctor's phone call to give us an update. We also had to answer questions from family and friends who were eager to hear updates on Maia. I normally answer with "she's good" but that seemed so misleading, so this time I mostly answered with "she's hanging in there" which was the truth. We had left the hospital around 2:30pm and we were guessing the surgery might take about 4 hours, depending on what they find. By 6pm we were tired and decided to head home. We finally get the call from the doctor around 6:45pm. Everything went as planned and they found the source of the bleeding right away and were able to stop it. They took out any extra fluid they found while they were in there and Maia was now back in her room, resting and recovering.

Super Hero family pic

Although the surgeon had used the same incision from the last procedure, they needed to make the incision longer. So when we went to see Maia on Sunday, she had a bigger bandage on her tummy. The doctors explained that they wanted to let it heal before continuing the dialysis. However, they were still flushing the catheter every 4 hours. They wanted to give the dialysis a rest for as long as they could. Since they were still able to draw more fluid out of her by flushing the catheter, Maia should be ok for at least the next couple of days. She was also continuing to pee, so that was also good. As usual, she was very alert and attentive to everything around her. When Gordon was talking to her nurse about having to go back to work full time, and how he'd only be able to come visit at night after work, Maia's eyes got big as if she heard and understood the meaning of the conversation! It's as if she said "what?... this can't be happening!"

Love her facial expressions!
"No! You can't go back to work full time!"

When we came to visit today, it was me and my brother, since Gordon had to go back to work full time. Maia had a good night and was continuing to have a good day. Her vitals and blood gases were still looking good, despite having the dialysis on hold. Her nurse said she had been a bit fussy so they gave her an anti-anxiety drug to help her relax. It seemed to work because she spent most of the day asleep, but opened her eyes every hour or so to check out what was going on. She had started to get a little more puffy so they were flushing her catheter every hour, hoping to keep the fluids off. Maia still looked good despite some puffiness. She had her monster beanie on and was sucking away on her pacifier. It was almost like she didn't have surgery 2 days before... she's obviously very resilient! Again, she amazes me! I don't always like to expect the worst, but knowing what she's been through, I sometimes don't know what to expect! Later this evening, however, she had some more problems, this time when the PICC line (a special type of IV that can be used for a long period of time) in her arm disconnected and they were not able to repair it. So they had to run her meds through one of her other IVs. Maia didn't seem to notice and actually slept through the whole thing! Nevertheless, we're hoping this doesn't become a bigger problem than it already is!

Tomorrow I make my first solo drive and visit to the hospital... it shouldn't be too bad. I hope to only get lost once! I'm so used to being a sleeping passenger on our rides to the hospital!... but I gotta do what I gotta do... whatever it takes to be there for our baby girl!


Saturday, October 19, 2013

Uncharted Territory...

Every Thursday for the past few weeks we've been having meetings with Maia's team of doctors and nurses. They mainly consist of surgeons, pediatric cardiologists and nurses, renal doctors, and also a social worker. They are very important and informative, and these meetings also help to make sure everyone is on the same page and kept up to date about what's going on with Maia.

At the last meeting, we discussed Maia's kidney function and prognosis. Everyone was extremely pleased to see her make urine again. Although it's not yet enough to be consistent, the renal doctor said it takes a few weeks for that to happen, so it's important to keep her on the peritoneal dialysis. However, they all wanted us to understand that Maia is still very sick. Her recovery has been progressing little by little, especially this last week, but they all wanted to make sure we understand that Maia is in a fragile state, one in which mortality was very much possible at any time. Each hurdle (both big and small) that she's come across and overcome, has set her further back in her recovery... and they're afraid that with anymore hurdles, she may not have the strength to recover and overcome them. In addition to this, one of the cardiologists mentioned that they found Maia's heart condition paired with her kidney condition to be extremely rare. The team of doctors at UCSF has been in contact with their other colleagues from all over the world and they have not found a similar case to hers!! Whether or not it's because other babies haven't survived or there has never been a baby with a similar condition to Maia's, it seems like the doctors are dealing with something unique. I guess that's why when I tried doing my own research on Google, I didn't find anything! Every baby seems to have their own set of CHDs with no two alike... and babies with similar conditions have completely different recoveries. I call it "uncharted territory" since they cannot find a case to refer back to... but the team of doctors and nurses are ready and willing to do whatever it takes to help Maia... however, they also wanted to reiterate that we have to keep in mind she's walking a fine line between getting better and death. 

Considering everything Maia has already been through, and now finding out that there hasn't been another baby with her condition, she has confirmed what we already knew... she's our little miracle baby. Even the doctors and nurses are sometimes surprised with how well she's been able to handle and tolerate the setbacks in her recovery. It's truly amazing to see how much fight she has in her! She's very alert and loves to open her eyes wide to take in her surroundings. All the nurses have grown to love her, and I'm sure Maia loves them just as much.

Another thing that was mentioned was our family's spirit. They wonder how we walk into Maia's room everyday with smiles on our faces. Why not? We know that nobody wants to be in our situation, but there's no use in having a pity party for ourselves and focusing on all the negative things in life. Doing that would be a waste of time and energy! Plus, we feel that Maia feeds off of our positive energy and feelings... and so do the doctors and nurses. If Maia is willing to fight for her life, then of course so are we. I feel that as parents, we can only do so much... so we must put our trust in the people that take care of her. They are all trained specialists that know how to take care of babies like Maia, so I'm sure it makes it easier for them to do their jobs if they know the parents trust and support what they're doing for the babies. Gordon and I have always been strong, positive people, and we can see that it has been passed on to Maia. It makes things easier on everyone, including ourselves, to be positively realistic about our situation. I'm reminded of what our genetic counselor once told us... that both our daughters, Marissa and Maia, chose the right people to be their parents... they knew we would be strong enough to handle this tough journey! Of course it also helps to have a strong faith in God and a great support system of family and friends!

Although to many people we handle stress well, we are only human and can only take so much. The thing that has caused us stress is Gordon's work. On Friday, he was informed that he has to go back to working full time hours starting Monday. We are thankful to them for the time he had off and the time they let him work part time, but our journey is not over. Gordon understands business and that it needs to be run. What he's struggling with is that work has been so slow that people at work are being sent home by lunch time. Yes, everyone has a different role at his work but slow is slow. They told him that the OSI (customer service scores) of other coworkers are directly related to Gordon not being there full time. What happened to everyone working as a team?  We really don't want to stress out about this too much because we don't want to complain, but "family is first." He's going to try and work full time and visit Maia at night but if it's too much stress and Maia's conditions worsens, we agreed to explore our options.

Maia has come a long way in her short life, proving some people wrong along the way... she's still got a long way to go but she's proved to everyone that she's a fighter!

Wednesday, October 16, 2013

Potty Time!...

For the past few days now we've been very anxious about the status of Maia's kidneys, and how they're not working like they're supposed to. Especially after our last meeting, where the focus turned to what might happen when they don't work at all, so we've all been praying, and expecting the worst while hoping for the best. On Saturday night, Maia gave us a sign that things may be headed in a positive direction! Everyone's pee pee dance and pee pee songs are finally paying off!

Gordon had to work a full day Saturday, so we went to visit Maia a little later than we usually do. Marcus didn't really feel like going and we didn't want to force him to go. Plus, with the doctor's words of discouragement (is that even a word?), Gordon felt it might be best if Marcus not get too attached to Maia, more than he already is... so my cousin, Melanie aka "Nining," was nice enough to watch Marcus for a few hours. Thank you!.... When we arrived at the hospital, the nurse said Maia was doing good and had been stable most of the day but that they were having some problems draining fluids with her dialysis. So Maia was swollen, but had been slowly shrinking throughout the day... she also mentioned that Maia had a pee pee diaper! I couldn't believe it at first, but she insisted that earlier in her shift she changed a pee pee diaper. I still couldn't believe it until she did another diaper change several minutes later and showed us the actual diaper!... don't worry, I didn't take a pic! It wasn't just a few questionable drops like before, it was yellow all over and the nurse even showed us the outside of the diaper where the little indicator strip had changed colors! So now we were excited and happy... finally she's started to pee again! It's what we've been waiting and praying for! It's a sign that her kidneys have started working again by making urine!

The following day we came into Maia's room to find her bed in the reclined position! It was almost like she had her own Lazy Boy chair! I guess in her case it's more like a Lazy Girl! The nurse said she hadn't peed yet, but had peed during the middle of the night. Although she had shrunk some more overnight, the nurse was still having some trouble with the peritoneal dialysis and has been trying to manipulate the catheter and also Maia's position to drain the fluids. It was taking longer than usual and turning Maia left and right every once in a while seemed to help. It seemed like Maia was liking this reclined position too! Who could blame her? At least she was looking at things from a different angle, even if it was just for 30 minutes.

Maia in her reclined position
Maia enjoying her Lazy Girl

On Monday, Maia's dialysis catheter was still causing problems with draining the fluids and when we entered her room, Maia was laying down on her tummy! It sounds funny, but we had never seen her back before, so we found it somewhat amusing! She even got a back scratch from Daddy without even asking! Maia wasn't complaining and the nurse even said all her vital signs and blood gas numbers looked better in this position. We asked about her pee (a daily question now) and the nurse said she peed a little bit, but not too much. For us, a little bit is better than nothing! We also got a visit from one of the renal doctors who informed us that since Maia has started to make urine again, it will take another week or so for some consistency. So we shouldn't worry too much if she pees one day and not the next... good to know! The nurse also said that the main reason Maia was on her back was because of the catheter. It wasn't working well at all so she notified the catheter specialist who would take a look at it the following day to see if it needed to be replaced, or if they could just flush it out in case there is something causing some blockage. Doctors and specialists later came in and discussed this with Gordon. Maia will go down to the operating room around 10am Tuesday morning to have her catheter checked out.

A new position for Maia!

 After trying not to worry so much, I get a call Tuesday around noon. It's one of the catheter specialists that did the procedure on Maia. They found some blockage in the catheter and were able to flush it out, so they did not need to replace the catheter, which would've been more invasive. They removed part of her omentum, which is tissue on the abdominal lining that is known to cause blockages in these catheters. It's also known to have no significant function, similar to the appendix. So a few hours later, we go to see Maia and she's sleeping, still recovering from her procedure. First thing we noticed about the peritoneal dialysis is that fluid drains immediately now, almost gushing out and takes less than 5 minutes. This was a dramatic change from yesterday when it was such a slow process to drain. So with that blockage taken care of, Maia should continue to shrink down to her normal size.

Ready to shrink back to normal

We're hoping Maia continues to remain stable with no major complications. We also hope she continues to pee!... once again, thank you to everyone for their prayers and support!

Saturday, October 12, 2013

A Day of Firsts...

Thursday aka "Friday Eve," turned out to be a day of firsts for us... I got the chance to change my first poopy diaper! It's been a while so I got kind of nervous! I wasn't expecting to do it, but the nurse said to go ahead. Since she hasn't been peeing, I knew it was a poopy diaper. Maia is still a bit swollen down there so it was somewhat of a challenge to make sure I cleaned her up thoroughly and quickly because she was getting mad and wanting to move around. But I got it done, woo hoo! =) 

We also had our weekly meeting with the doctors and nurses yesterday. Although we had Marcus with us, Thursday is Bingo day at the hospital, so patients and siblings can hang out in the playroom. So while Marcus was having fun, we were surrounded by all kinds of seriousness.... We were updated on Maia's condition by one of the heart doctors, a PCICU fellow, who turned out to be a glass half empty kind of doctor. Maia had been continuing her baby steps until she got the infection a few days ago and was given antibiotics. After making adjustments on her meds and ventilator on Monday, they were surprised how well she was doing on Tuesday, considering her overall condition. For now they will keep her on the antibiotics for the next week or so just to be safe and make sure the infection is completely gone. Then the topic turned to her kidneys. Maia's kidneys are still not making any urine, so they need to keep her on the peritoneal dialysis. She is basically back to how she was before getting the infection, which is both good and bad. Maia is stable, considering how sick she is and what she's already been through, but this cardiologist is afraid that the longer her kidneys don't work correctly, it increases the chance of them not working at all... and in the long run, he said it would most likely go downhill from there, with us having to consider a kidney transplant, and even death. I was actually kind of shocked at the negative disposition he had. I know that death is always in the picture, especially when dealing with a baby that's not healthy, but I just think it's way too early to be thinking about it. It's part of the doctor's job to keep us informed and look at the big picture of our situation, but it almost seemed like he wasn't giving Maia a chance! It turned into such a negative discussion and kind of ended that way too, which seemed confusing since the renal (kidney) doctor that checked on Maia the other day told us that the kidneys are the most stubborn system and it takes a while to get it going... and that's why we were all taking things day by day, because it's hard to predict the future right now. I guess it wasn't just us that found the tone of the meeting a bit on the negative side... the social worker came up to me afterwards and felt the need to apologize for the way things things went. I basically told her that we know it's just a part of the situation were in. Maia is sick, that's why she's in the hospital and that we're used to hearing negative information from what happened last year, but it doesn't necessarily change things for us. We are still positive and hoping for the best. Everything will work out the way they're meant to be.... Each baby has a different time table when it comes to recovery and Maia seems to be a stubborn little patient! We just need to wait for her kidneys to wake up and get her to pee! It all sounds so easy and I realize now it's something most of us take for granted!

At the end of the meeting, one of the nurses suggested we hold Maia, since she's stable now and she doesn't have too many things connected to her. Everyone agreed it would be a good thing and it could only help her... especially Gordon, since he hasn't gotten the chance to hold Maia yet! So the team of nurses made it happen. After carefully arranging the wires and lines, and the breathing tube, they got everything ready, including positioning Gordon in a chair with pillows on his lap for added support. Then they carefully placed Maia in his arms... Gordon looked a lil nervous but they both did good, and Maia was so relaxed she fell asleep right away! I went down to the playroom to get Marcus, but he was too busy learning to play "Madden!" So I went back to Maia's room without him. Since we weren't sure how much "holding time" we were going to get with her tonight, Gordon didn't want to take up all the time and gave me some time to hold her again... and Marcus eventually joined the fun when the playroom closed! Marcus kept playing with her hair and giving her kisses, so she woke up and opened her eyes, just as she usually does when he's around! It was a moment we all enjoyed!

Tuesday, October 8, 2013

Another Hurdle...

After several days of being stable, we came across another hurdle yesterday... Maia's white blood cell count was elevated, which indicated that something was up. Although the doctors weren't sure exactly what it was, they gave her some antibiotics. Other than that, Maia looked good and was even sucking on a pacifier! I didn't think that was possible since she has a breathing tube in the way. The nurse just moved the breathing tube to the side and was able to fit the pacifier in her mouth... and Maia seems to like it, she may even love it! She can't hold onto it herself though so after a few minutes it falls out of her mouth. She's been sucking on the breathing tube for quite a while now so to finally suck on something else probably made her really happy! 

Maia and her pacifier

Giving me the evil eye as I position the pacifier!

Then yesterday, we arrived at the hospital to find out that Maia was indeed fighting a bacterial infection that was in her blood and also has caused some fluid in her lungs. After finding this out, they changed her antibiotics and gave her another type which covered a broader spectrum. However they had to put another IV on her since the other IV would have too much going through it. Maia's been poked so many times that they really didn't want to run another IV on her arms or legs, so they tried to put one on her head. In the process of trying this, they had to shave some of her hair off! So Maia had her first "haircut" yesterday! The nurses were nice enough to save the hair for us!... She has so much hair though, I really didn't notice until they pointed it out! They also put her back on some heart meds, epinephrine and dopamine, which they had taken her off of a few days before. They aren't sure where exactly the bacterial infection originated from, but since there is some fluid in her lungs, the doctors think she may have some kind of pneumonia. They're hoping that the antibiotics will do it's job and take care of the infection, so we'll see... just another thing to check on day by day! She was mostly asleep yesterday while we were there so we didn't get to interact with her too much. Hopefully today she'll be awake. I called the nurse this morning to get an update and Maia is doing good this morning so far. All the adjustments made yesterday afternoon regarding the infection seems to be working so no changes were made during the night and she's been stable. We're really hoping this infection doesn't get any worse... she's been doing pretty good up until yesterday. So we'll see what happens. It's been hard for the doctors to predict anything, so we're all pretty much on a day to day basis, when it comes to progress and her recovery...  

Everyday is a new day, another chance to make it a good day!

Tuesday, October 1, 2013

Little By Little, Day By Day...

For the last few days, Maia has been making baby steps in her recovery! We've had several days in a row filled with little improvements. This is such a good feeling for all of us, doctors and nurses included, since Maia's first month of life consisted mainly of a few setbacks with little progress made in between those setbacks. It's almost like she was stuck in neutral, and she's finally learned to get herself in gear and is now headed in the right direction!... sorry for the car-related analogy, but mommy and daddy do have a background in the car industry! 

This past Sunday, September 29, Maia officially turned 1 month old! It seemed like the fastest one month ever! We didn't celebrate too much, but Marcus did want to dress up a lil bit by wearing his bow tie and sunglasses! Papa and Lala (my parents) also stopped by but we kept things low key and just spent Sunday morning with her. She was wide awake and seemed ready to party!... ok, not really, but she had her eyes wide open and was very alert to everything around her! =)

Marcus doing an action move
Marcus posing for the camera

Maia resting comfortably
Last week Maia was taken off the ECMO heart/lung machine, which also did her dialysis. She was mainly put on this machine to give her heart and lungs a rest while continuing the dialysis to help her get rid of all the extra fluids in her. Although her heart and lungs work fine, by doing this, they were able to take her off of the heart meds, which was also contributing to her retaining fluids. All this enabled her kidneys to not have to work so hard. She was connected to the circuit by a cannula that extended into 2 large tubes, on the right side of her neck. Most of the time it leaked so she had to be given blood daily and the dressing had to be changed every few hours. They also found a blood clot, so her blood products had to be increased also. So they first took her off the lung support, which wasn't a big issue since her lungs are fine. Then after they took her off the heart support, then the dialysis... little by little changes were made until she was completely off the machine. For right now, they have her on PD (peritoneal dialysis), which consists of a tube that goes into the abdomen lining, where nutrient rich fluid enters the body and is later flushed out regularly about every hour or so. It seems to work like a simplified version of dialysis that doesn't require the use of a machine... at least that's how I see it! 

Maia is tolerating everything really well and little by little, they're continuously reducing her meds and adjusting the rates on the ventilator, so we're hoping she won't need the breathing tube soon. Maia is also getting fed high caloric formula through a tiny feeding tube that goes up her nose and down into her stomach, instead of nutrient rich fluid through her IV. Right now her drugs/meds include milrinone (to help the heart contract), the lowest dose of dopamine (dilates blood vessels and increases urine output), and heparin (anticoagulant to prevent blood clots) for being on the ECMO machine. For pain, they give her fentanyl, adjusting the dosage as needed and she is completely off of antibiotics. Due to circulation issues and also from being on the machines, some toes and fingertips have turned purple. It's been a lil nerve racking seeing this but after several days now, they too are showing signs of improvement. She now wears mittens to keep her hands warm and also to prevent her from grabbing all the tubes and wires around her! Another "side effect" from being on the ECMO machine is that Maia is a bit jaundiced. The doctors explained to us that this is because the plastic tubing from the machine tends to break a lot of blood cells, releasing bilirubin, and causing the yellowish tint in the baby. This is also evident in the fluid flushed out through dialysis... it's very yellow, like concentrated pee! The doctors expect this to go away after a few days. Maia was looking a bit yellow a few days ago, but she's looking better... she actually looks darker now and has a "bronze glow" as the nurses put it, like she's been tanning! She also has a few rashes that are healing nicely, from the constant change of dressings and bandages... I guess you can say she has sensitive skin! Gordon always jokes about all the marks on her little body, telling the doctors and nurses that we'll need some sort of letter or document when she starts school, that explains all these marks and let everyone know that we didn't cause them and we don't abuse her!!

Maia looking around her room
So after all that, Maia is still sick but healing and recovering nicely... slowly but surely she's getting better. She's down to an IV, an arterial line and PIC line (to monitor her blood pressure, get blood samples, and receive more blood), her dialysis catheter, and her breathing tube. We're hoping she gets taken off the ventilator soon so she won't have to use that breathing tube. This would mean we get to see her face!... and possibly hold her too! That's so exciting for us, especially Gordon, who is waiting patiently to hold her for the very first time!! We also noticed that she's constantly sucking. We're not sure if she's trying to suck on the breathing tube or not, but she seems to still have her sucking instinct! I'm hoping this means we won't have feeding issues and we'll eventually get to feed her by bottle or even breastfeed her, instead of having the feeding tube for an extended period of time. These last few days have been different since we're getting more time to spend with her! Last week it seemed every time we arrived at the hospital, the entire PCICU unit is closed because a procedure was being done on one of the babies, usually Maia! We would get off the elevator and walk by the waiting room/family lounge and it would be full... that was our sign that the unit was possibly closed, and it would be confirmed when we reached the unit doors and see the official closed sign. So now we actually get to hang out in her room. Since Maia is also no longer attached to so many machines, there is more space in her room too! She also doesn't require 2 nurses anymore, just her regular nurse and the unit respiratory therapist that's in charge of the ventilator. All these are signs that she's making progress, and we can breathe a lil bit easier.

God's plan is always in the works, so we're just going with His flow! We're still a long way from going home, but we're closer than we were yesterday!!!