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!!!

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