Monday, February 24, 2014

Changes... for the Better

Lots of new & exciting things have happened since my last post! Since it looks as though Maia's next heart surgery, the Glenn, won't be for about another 2 months or so, we've been encouraged to help Maia be more like a typical baby her age. Maia also had another catherization procedure on the left side of her chest, which was an area missed during her bigger heart catherization. She also had her peritoneal dialysis (pd) catheter removed, which meant another trip to the operating room. Despite all this excitement, Maia was able to continue adding more hours on the trach collar, and less time on the ventilator.

Maia relaxing

When Maia's Drs say they want her to do more typical "baby stuff," one of the things they want her to do more of is sitting up. Since she has been in the hospital her whole life, she has spent most of that time laying down on her back. By this time I think most babies can roll over, sit up, and are beginning to crawl. So each day, Maia spends time sitting up on her boppy pillow. She still needs a lot of support and is still a "bobblehead" but everyday she seems to do better with her head control... it doesn't help that she has some big cheeks! We have also started sitting her down on the playmat on the floor. Sooner or later she will build up the muscles to hold her head up high and sit up all by herself. Last weekend, we also took her out of her room to go for a wagon ride around the 7th floor. She looked so nervous! I think she was so used to holding her either her trach collar or vent tube, that when they attached a small oxygen/humidifier onto her trach, she wasn't sure what to do with her hands. She held on to the small tube coming out the side. By then end of her ride, she had actually disconnected it from her trach! But it was such a treat for her since all the other times she's left her room was to have some sort of surgery or procedure done! This time she got to see the big fish tank in the family lounge.
Boppy time
Maia's first wagon ride

Maia looking nervous

Watching the fish
Maia also went back to the cath lab last week to have another catherization on the left side of her chest. The Drs wanted and needed to know what her veins looked like on that side, since that area was missed during her big heart cath. They had trouble accessing her veins last time and had to go through her arteries, so they didn't get a good pic of the blood vessels on the left side of her chest. On her MRI, the Drs knew that Maia's innominate vein was blocked (vein that runs parallel to the collarbone). But they also noticed that she might've grown another vein, but they weren't sure where it led to or how big it was, but they wanted to know these things to see if they would be able to use it in her heart surgery. Dr. Teitel did the catherization again and he said it would only take 5 minutes... and it did! Maia needed no pain meds or sedation. They held her hands up and injected the dye while taking pics and video from 2 different angles. They allowed me to watch from the window in the room next door. After that short procedure, Dr. Teitel explained that her jugular vein comes down the left side and splits into two. One goes to her heart, which we knew, and the other loops around toward the back and connects to the superior vena cava on her right side. They were all pleased to find this out since it's all useful information they need for her surgery.
Maia looking around at all the machines

Getting ready for her mini cath

Mommy's view of the short cath procedure

Today, Maia had surgery to remove her pd catheter. She was taken off dialysis last November but Drs wanted to keep the catheter as a precaution, just in case she needed it for future use. But her kidneys have done well enough that they all came to the conclusion that she didn't need it. Dr. Cohen, her heart surgeon was very passionate about getting this out because of its risk for infection. The only issue that came up a few hours before surgery, was her feeding tube. Dr. Oishi came in to talk to me because the pediatric surgeons had approached him about putting in a G-tube, since Maia would already be under anesthesia and it would save her from having a separate procedure done. This is a feeding tube that is surgically placed into the stomach, instead of passing it through the nasal cavity. However, the problem is that Maia throws up and doesn't seem to tolerate feedings in her stomach, so the G-tube didn't sound like such a good idea. She currently has an NJ-tube, which goes through her nose and down past the stomach, into the jejunum (small bowel). Other options mentioned was a J-tube, a G-J-tube, and also a surgical procedure called the Nissen fundoplication, which would help her reflux. So the pediatric surgeons, the ICU Drs and also Dr. Cohen, talked it over with us before coming to the conclusion that for now, they will only remove the pd catheter as scheduled. Any feeding issues will be addressed later, at a different time.

Before going into the operating room

Throughout all these changes and procedures, Maia has continued to work hard at weaning herself off the vent. This past week she went from doing two 6-hr sprint sessions to a full 12 hour session. By the end of the week, they kept her off the vent for as long as she could tolerate... which was 17, 18 hours!! Then today, when the nurse updated us, she said that Maia made it through the entire night off the vent!!! Yay!! Amazing!... just for tonight they'll put her back on the vent as she recovers from surgery. Then it's back to being off the vent again!
Maia in her shirt dress

Marcus & Maia

Last but not least, Maia was baptized! We had a short little ceremony right in her hospital room! We originally had planned for a bigger party, with the baptism at the church. But since Maia is still in the hospital, we decided to go for a more low key type of celebration. It was short and sweet and Holy water was put into a syringe! We had 3 godparents present, and 4 with us in spirit. Maia also got to wear the same dress I was baptized in! It was a great day!

Maia with Nino Dada

Maia with Nina Bel

Maia with Nina Rena

So it's been a fun-filled week, full of new and exciting changes. We're looking forward to Maia's future accomplishments, however big or little. We're at a good place right now and we're ready to keep moving forward and take more baby steps... these baby steps are finally adding up! We're so grateful to everyone for the love, support, and prayers. We are so blessed to have you all in our lives! 

Friday, February 14, 2014

Heart Week...

This past week was a busy week for lil Miss Maia! We started it off with CHD Awareness Week, and although we are somewhat new to the world of congenital heart defects, we tried to do some little things to take part in spreading awareness. Since we're busy balancing life between the hospital and home, the easiest and most convenient thing for us to do was spread awareness through social media, mostly on Maia's Facebook page "Heart of Maia." Posting facts and statistics will hopefully make people more aware of these defects, especially since in my family, there are several buns in the oven! We're also planning on participating in the American Heart Association's Heart Walk later this year in September, in San Francisco. We've started our own team, the "Mighty Maia Fight Team" and we're hoping many will join us for this event! It's free for all ages and it's for a very worthy cause! So join our team by clicking on the following link: AHA Heart Walk - Mighty Maia Fight Team. The walk will be on Friday, September 19, 2014 from 11:30am to 1:00pm at Justin Herman Plaza in San Francisco. We will have more information in future posts!

Last Friday, February 7, was not only the beginning of CHD Awareness Week, it was also the day of Maia's heart catherization, a routine procedure for pre-Glenn surgery patients, to check blood flow and pressures within the heart and blood vessels. However, for Maia, it meant risking further injury to her kidneys because of the contrast dye that's used. So we were all very anxious. To help minimize the potential kidney damage, she was given sodium bicarbonate one hour (and after) the procedure. After about a one hour delay, we finally took the walk with Maia to the elevator, then up to the 12th floor and into the cath lab. It was a bit intimidating with all the big equipment! So we gave Maia a kiss and another pep talk about being good... and what I called "easy access." It was one of the things I was worried about. Maia's veins in her thighs had already been used in previous procedures and for a number of PICC lines, so the Drs had described her as being "tapped out." Dr. Teitel, the pediatric cardiologist who performed the heart catherization, reassured me that there's always a way to the heart, including through the liver, which would be a last resort. So we left the hospital and waited at home for the phone call... 
In the cath lab waiting for the procedure to start

Finally, about 4 hours later, Dr. Teitel called to give us the update. He said Maia did great and was about to leave the cath lab and head back to her room. As I expected, they did have some trouble accessing her veins through her legs, so they ended up using her arteries. I remembered from biology class, arteries carry blood away from the heart, so for this procedure, they had to take the long road to get to Maia's heart, so it took longer than expected. But they were able to get great pictures and measurements of her heart and the blood vessels. Her heart anatomy is ready and set up for the next surgery, and her lung pressures are on the lower side, which means she is ready. In his opinion, she can wait about another 3 months or so before having the next surgery. So we breathed a sigh of relief that so far the news was good. We now wait to see how her kidneys react to the contrast dye used in the catherization. When we arrive in the hospital Saturday morning, Maia is wide awake. She's doing great and recovering from the heart cath with no problems, including anything kidney related. In fact, the nurse mentioned that so far, her kidney numbers look better than they did before the procedure! I didn't even think that was possible! So we're hoping this continues! We also notice that there are scratches on her cheek and nose near her NJ feeding tube... she's been trying to take out her feeding tube! Although the tape they use to hold it down to her cheek is really secure, we know that when Maia is determined to get her way, she usually does.
Maia with scratches on her nose and cheeks

So the next few days we get more good news... Maia's kidneys did better than expected and no further damaged was caused by the contrast dye. Wow! Thank God! For now we wait until the Drs have their weekly meeting, then wait for them to discuss things with us. Maia also went back to her sprinting sessions, three times a day. This time, however, she is doing her sprints completely off the ventilator! She uses a trach collar which is a tube that connects to a humidifier and some oxygen... so she is pretty much breathing on her own during these sprints. She continues this throughout the week and does so well that they've increased her time to 4 hours each session, 3 times a day! This almost guarantees that she'll sleep through the night because by the end of the day, she's out for the count! For now the plan is to continue these sprints during the day and allow her to rest at night. The Drs are hoping (along with us) that she will be off the ventilator soon.

Maia "sprinting" on her trach collar
"Sprinting" off the ventilator!

Yesterday, we had our weekly family meeting. This week it was with Dr. Sarah Tabbut and she had nothing but good news for a change. She discussed in more detail the results from Maia's heart catherization. One of the concerns going into the procedure was the possible blockage of one of her vessels on the left side, which was seen in her MRI. After the cath, they found that it was blocked, but surprisingly, Maia's body responded by growing another vessel to take the place of the blocked one! The Dr. said this was really amazing. They want to follow up on this by possibly doing another catherization with minimal contrast dye, in this particular area to clearly see where this blood vessel connects to and see if they can use it. She also mentioned that the pressures in the lungs were on the lower side, and that Maia is anatomically ready for the second stage surgery, the Glenn. The Drs have decided that the best thing to do now is just wait, to give Maia time to grow and get stronger, and also give her kidneys more time to recover. I asked if there was any time frame for the next surgery, and they were all in agreement that right now they will let Maia take the lead and she will let everyone know when she's ready. When you think about it, this is the way Maia's recovery has gone, so the Drs will watch her and follow her lead. Whenever the Drs had made the decision to do something and she wasn't ready, she let them know. Just like when they had counted her out when her kidneys stopped working and she went into kidney failure. She didn't pee for so long that they didn't expect her to pee at all and started to discuss things like kidney transplants and also death. A few days after that, Maia started to pee again! When they transitioned her from continuous feedings to bolus feedings, she started throwing up regularly until they put her back on continuous feedings... she wasn't ready. So after being in the hospital for over 5 months, I think the Drs know her very well now! Maia does things when she's ready... not when the medical books or journals say so, or whenever the Drs expect her to! So the Drs are allowing her to have her way and call the shots! Another thing we talked about is her NJ feeding tube... she has pulled it out 5 times this week!!! I didn't even think it was possible for her to pull the whole tube out of her nose! The funny thing is, nobody has witnessed her doing it. One time, the nurse left the room and told us she'd be back and that she was just going to check on another patient. Gordon was checking his email and I left Maia's side to grab something from my purse. It took me about 5 seconds and when I went back to her crib, she had pulled out her feeding tube! She was holding it in her hand and milk was dripping out the end of it! So the nurses have had to constantly make sure the tube is securely taped down to her cheek. If there is even a little space or break in the tape, she will work on getting her fingers in there and pull on the tube until it comes out! She's very sneaky about it too! She does this while sucking on her fingers. She'll position her other fingers to slowly remove the tape from her cheek!

Step 1: Fake sleep, suck, and sneak finger through tape

Step 2: Loosen tape and position other fingers

Step 3: Grab and pull

Since surgery won't be for another few months, they want Maia to work on developmental things like sitting up more and working on head control. She's been on her back most of her life they'd like her to start doing things a typical baby her age would do. So we're starting to sit her up more with the help of the Boppy pillow. The Drs have also cut back on her calories, because they don't want her to gain too much weight too fast. Since she has been doing so good on weaning off the vent, they don't want her weight gain to interfere with her progress on the vent... so we joke around and say she's on a diet! Maia has also been smiling more, and I finally got a smile from her! It's been difficult to catch on camera though! But I think she's used to that black rectangle I put in her face all the time!... and last but not least, big brother Marcus got to hold Maia for the first time!!! He got help from the Boppy, but it was probably the highlight of the week! 

Boppy time
Nose to nose
Holding hands

Marcus is all smiles

As we end this week with Valentine's Day, we're happy and thankful it's been a good week for Maia and we pray this continues. I recently started checking out some other baby pages on Facebook and there are so many, it's very overwhelming! Some have brought me to tears, especially reading about the babies that are now angels. Their journeys and experiences are so heart wrenching yet so inspirational, I can't help but follow them on their paths and see what roads they take in life. Just as others have prayed for Maia and our family, I also say a prayer for those babies and their families as they continue on their life's journey. As I like to say, our "adventure" is just beginning and we know the road ahead won't be easy, but with God, our family and friends, we know we are in good hands... and we're so happy to have all of you join us in our life's adventure! 

Friday, February 7, 2014

Thank you

Thank you, 

I started writing earlier this week with the intention to finish the same day. The timing does not always sync with our craziness to be able to do that, so I am writing what I feel, think, have done or may do, and it may not be in any particular order, but are blogs supposed to be that way?  
Every day is different as much as I try to make it smooth. You never know what is down the street, what is around the corner, what is over that hill. Some days we leave to UCSF and its smooth sailing all the way and some days we’re not so lucky, someone may be broken down or in an accident, it may be raining, flooded, and our drive is anywhere from 40 minutes to 1 ½  even 2 hours both ways, but that does not matter. I adopted the “Traffic is My Friend” saying many years ago. Yes, sometimes I get frustrated or irritated but our drive is something anyone would do for their kids. I wanted to thank the people throughout my life that showed me that with the love you have for your kids, you would drive any distance for them.
Myself, and co-worker/commuter, friend/brother from another mother, Elmer, would drive every day from Los Banos to Santa Clara. I am not a morning person. In fact when we commuted, I would pull up to Elmer’s house and before he got in the car I was already in the passenger seat asleep and would wake up at work. At night it was reversed, I drove and Elmer slept, and we did this for over a year and a half. He did it so his kids can eat, have a roof over their heads (a new house like every 2 years LOL) and cool cloths on their backs. 
My Compadre, Pnut, when I first moved to LB he was driving by himself to Los Gatos, so his kids didn’t have to go to what his daughter called a gang infested neighborhood. They were able to be in a community where they felt safe, where his children who I call my nephew and niece, can be kids and have fun and grow up.
A friend of mine, Scott, drives every other weekend to LA to see his daughter, even if it’s just for a short amount of time he gets to spend with her. Sometimes he did the drive every week and sometimes he did it every third week for a stint, but that hurt him; he wanted to see her, to grow up with her, to be able to be by her side every day. We all know someone with split custody, and I gave Scott big props from the beginning for making that drive as if it was nothing and being a responsible father. For him it really is nothing, no drive will ever stop him from seeing his daughter. Scott’s journey to see his daughter makes me feel lucky that the journey we take to see Maia is so short. I want to thank the three of you, for showing, teaching and inspiring me that no matter the journey, no matter the distance, no matter the circumstances, I am my kid’s dad and I will take care of you. I love my kids. Thank you.
I joke around and say sometimes that we should have named Maia, “procedure,” because she has had so many that I would need more than one hand to count them all.  She goes in today for her next procedure.  It sounds simple, a heart catherization . They inject a dye into her blood vessels and her heart so they can measure the pressures and blood flow, and see how the heart is working. I say it sounds simple but it’s not. They add dye into her heart… how do they add dye, how do they get to her heart, how do they read it, all that was explained and researched, it is not a simple procedure. I may be thinking that it is simple, just because she has been through so many procedures that the tension, stress, and emotions that come with having to sign a consent form, and hearing your daughter is going under anesthesia again, is getting easier on us.
Maia is a fighter!!!!! Back in a recent post when I was at the hospital getting my cortizone injection for my sciatica, they actually injected a dye into my sciatic nerve, and it hurts. They have a technician standing by to administer pain meds at a moment’s notice. For me it is not that painful, no meds needed. That makes me think about my high tolerance for pain, and Rizza’s. Maia is a product of us and her tolerance is high too. I pray that she does great, that there are no problems, that it all works out so we she can continue taking baby steps in the right direction, the direction home.

One day she will come home. One day we will be able to hold her whenever we want. One day she will wake up in our room, but for now she is at the best place to keep her healthy and alive until she is ready. We really want to thank the team at UCSF Benioff’s  7 East. EVERYONE that makes that floor run. From the outside company that keeps the elevators running so we do not have to use the stairs (I would actually like using the stairs for exercise), so we don’t have to hear complaints about how long the elevator takes.  I do smile and reassure people that it’s coming and sometimes it’s quick and sometimes it takes a while.  (“Awhile” is an adverb meaning "for some amount of time" or "for some duration").  Usually we get a sigh of relief and wait patiently, since realistically, we’re not going anywhere and neither is whomever you came to visit.
Want to thank security, making sure the right people are going to the right places and documenting it. Within the first 24hours of Maia's birth they had a code for lock down, ALL doors, elevators stopped; lights are flashing, alarms going off and the staff ALL in action. The code was for a baby that may be in danger, may be being abducted. It’s  kind of crazy yes, but they have a code for it and yes, it could happen. Turned out to be that someone walked a baby beyond a certain area and it triggered the sensor, and every baby is tagged so the hospital goes on lockdown whenever this happens, Cool. We want to commend security, we have watched people coming in with emotions all over the board and they handle it, efficiently, and with great customer service.
We thank everyone on 7 East. From the servers that deliver food to Rizza so she can produce healthy milk for Maia. To the staff that cleans the rooms, picks up linens, removes garbage. All the nurses, doctors, everyone on the staff.  Being at UCSF as long as we have now, almost 5 ½ months, we have gotten to know a lot of people. They are nurses, doctors, cleanup crew, etc, etc, and they too have families, they have lives outside of work, and they have feelings and emotions too. They sit in traffic or ride the bus, they are sad when a kid passes away and happy when one does well. The staff is knowledgeable, professional, kind and they have made it fun throughout our journey.
They are all part of the “MIGHTY MAIA FIGHT TEAM”