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! 

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