Wednesday, January 29, 2014

5 Months Old!...

Maia is 5 months old today! Hard to believe it sometimes since she's been in the hospital the whole time. But she really is growing and learning new things! The last few days have been filled with many discussions about what to do next, and each day I think the big picture looks a little bit clearer. All of Maia's doctors are slowly coming together to figure out the next plan of action....

Maia with another crazy hair do

As we've mentioned before, Maia is due for her second open heart surgery, the Glenn. For most HLHS babies, this happens at around 3 to 6 months old. Since Maia went into kidney failure while recovering from her first surgery, the Norwood, they've wanted to wait on having the next surgery, and give her time to grow while also giving the kidneys more time to recover. She had an MRI last Tuesday and the cardiologists were happy with the results. She was presented at a conference yesterday to discuss her condition and recovery, and also her next surgery. Since they're all pleased with what the MRI showed, they want to schedule her for a heart catherization, which will measure the pressure and blood flow in the heart's chambers and also the major arteries. This procedure is routine for pre-Glenn patients and it's normally not a big deal for heart babies, but since Maia has kidney issues, it becomes a concern because contrast dye is used. Her kidneys will have to process this dye. This leads us to our next issue of concern, her dialysis catheter. This catheter was surgically put in a few days before Christmas. We are hoping she will no longer need any dialysis and the catheter will not be used. Since Maia had a very difficult time recovering from her first surgery, her doctors wanted to put in this long term catheter just in case she needs dialysis when recovering from the second surgery. However, this catheter has had some problems recently and nobody knows for sure if it works! It was being flushed daily for about 3 weeks until a clot was removed about 2 weeks ago. Since then it hasn't been flushed or tested. So for now, all the doctors are in agreement that the catheter should come out... it's just a matter of "when."

Snack time!

So after the Drs' conference, Dr. Sanjeev Datar, one of the critical care specialists, came by to talk to us and give us an update about what was discussed. He said they are going to schedule Maia for the heart catherization sometime in the next 2 weeks. Depending on those results, they will then schedule her for the Glenn surgery. Since Maia's kidneys will need to process the contrast dye that's used for the catherization, they will look at this procedure as sort of a stress test, to see how her kidneys respond. Depending on how far out her surgery is scheduled will determine when they might remove the dialysis catheter, if she doesn't need it. If after the heart catherization, they find that she needs to be put back on dialysis (to help process the dye), they will use the catheter (if it works) or replace it with a new one again. If her kidneys respond well and she doesn't need dialysis, and the Glenn is scheduled within a few weeks, they might choose to leave it in until after surgery, just in case she needs it. If the Glenn is scheduled for a few months later, then the risk for a catheter infection increases, so they might choose to remove it sooner, after the heart catherization. Maia has also been put back on continuous feeds. Since making the change to bolus feeds (feeding for 2 hours then resting for 30 mins before another 2 hour long feeding), she's been throwing up regularly. A few days after being back on continuous feeds, she has thrown up less, but was still throwing up. So they've been giving her Reglan, which helps food move through the digestive tract... and so far it's been working, no throw ups in the last 3 days. The focus now has shifted to weaning her off the vent so on Monday, they started her sprinting exercises again, to help build up her chest wall muscles and her breathing coordination. She's been sprinting 3 times a day, with each sprinting session lasting for 2 hours. She's been doing so good during these exercises that she's been sleeping through them! Her respiratory therapist said this is a good sign because it means she's having no problems breathing on her own. If she was having any difficulty, she would be breathing hard, struggling uncomfortably, and she wouldn't be able to sleep. So hopefully she continues to do well with these sprints. The goal is to have her off the ventilator before the next surgery. The Glenn surgery involves pressure changes in the heart and arteries, so being on the ventilator will have a negative effect on the surgery's result. So the Drs. are hoping she will continue to grow and gain weight, while continuing to practice breathing on her own. It becomes a balancing act, since they don't want her to gain weight and grow too fast, because this might cause some breathing difficulties, and interfere with weaning her off the vent. So they've been weighing her twice a week and watching her growth very carefully. At 5 months old, she weighs in at 12 lbs. 2 oz. (5.5 kg). I think healthy babies her age weigh around 15 lbs, so she's slowly getting there, especially when you consider the fact they had to shrink her down to get her chest closed (for the second time) at 3 weeks old. It's all quite confusing, with a lot of "if's, and's, or but's" involved!... of course this may all change since with Maia, many things don't go as planned! She seems to dictate whatever she can, which changes the course of her recovery!

Mommy & Maia

As for the room situation... "ask and you shall receive." Since Maia cannot talk, we did the asking for her. Although we discussed it at our last family meeting, I don't think Dr. Patrick was convinced that our reasons for wanting Maia's old room back were sufficient enough. But many of Maia's nurses understood that we just want the best for Maia and were on our side, including Cathy, the nurse manager. So they all helped make it happen Sunday night... and when I came in on Monday for our daily visit, Maia was back in her old room and everyone noticed an immediate change! She was no longer hot and sweaty, and she was so relaxed, she slept for most of the day! We felt the cool breeze coming from the vent above her crib and knew that it helped keep her cool. We first thought it might be a bad thing and mentioned it at a meeting about 2 months ago. But ever since Maia changed rooms, she's had 2 fevers and was constantly sweaty. Now that she's back under her cool breeze, she's been doing great! What we first thought could be something negative, turned out to be a positive thing!

As for life away from the hospital, I celebrated my birthday this past Thursday. Gordon and I went to The Slanted Door in San Francisco for dinner. We've heard so many good things about this restaurant, so we were both hungry and excited. It was very crowded, so I'm glad I made reservations! We also had a gift certificate from our Brooklyn friends, Albert & Sophia... Thank you! So we ordered a lil bit of everything! It was a nice experience, but I don't think it lived up to the hype like we expected. Gordon is extremely picky when it comes to food, so he thought it was just ok... it was a bit pricey, but then again, its SF, so I'm sure we paid for the view also! Then I came home to a great big birthday poster made by the one and only, Marcus! It also came with some hugs and kisses! He worked really hard on it and it will probably remain hanging on the wall for a very long time!

My birthday poster by Marcus

So this past week was filled with many positive things. Maia continues to make progress in the right direction and she has even started to smile!!! However, right now she seems to be very picky about who she smiles at! So far she's smiled at Daddy, a couple of nurses, and her physical therapist... I'm eagerly waiting for my smile! Many discussions have been made and there are more to come regarding the next steps to take. By now we're pretty much used to the all the changes! We think it's due to a combination of Maia's stubbornness and also the trial and error methods the Drs. use to figure things out, since Maia is in "uncharted territory" and all her Drs. are hoping not to rock her boat too much since she's been nice and stable lately. She really is a miracle and amazes everyone. Her Drs. have already mentioned to us that they'll be writing a (medical) journal about her because she is the only baby with HLHS & kidney failure, that has made it this far... and she's not done yet! So we're all anxious and excited for her to take the next steps in her recovery.
Maia's sweet smile!

Jeremiah 29:11

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

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