She's Baa-ack... (in the hospital)

June has been a whirlwind month for us! Obviously, blogging hasn't been a priority (sorry about that)... but I'll try my best to update!

Maia was officially discharged from the hospital on Monday, June 2, 2014. The first week was actually very busy with some of her follow up appts already scheduled. But in between those appts we were all loving the fact that she was home!

Maia... happy to be home!

We worked out a schedule where she eats during the day about every 4 hours, and we let her sleep through the night without a feeding. We also have a schedule for her meds which we give via g-tube. In the morning it's Lasix and Enalopril, then 1/2 baby aspirin and Prevacil. In the afternoon we give her iron and vitamin D. Then at night, her second dose of Lasix and Enalopril. Maia also has protein powder that we mix with her formula, Enfamil 20 for infants. She was also discharged on .5 Liter of oxygen, but she hates to wear her nasal cannula, so we've been giving her oxygen as needed, mostly at night when she sleeps. 

So fresh and so clean!

Maia loves being at home! She hardly ever cries and is very good at entertaining herself. She doesn't really like being on her back very much, so she learned how to roll to each side! She knew how to get to the halfway point but had trouble getting her hips and lower body to follow! She then figured out that if she kicked, her lower body had momentum to turn over too! It is so funny to watch! Maia also loves watching tv and playing with her exercise gym that has hanging toys she can pull. But she really loves interacting with everyone, especially big brother, Marcus. He helps out with whatever he can do. He even changed a diaper, his first and last one, he said! He also claims to have taught her how to arch her back and also how to make bubbles with her nose! But sometimes Marcus gets a little too close and Maia will punch and slap him! She lets him know that he's getting in her face and she doesn't like it at all!

Marcus changing his first diaper

Nice job, but he says it's his last diaper change!

Maia also enjoys the outdoors. So we take her on stroller rides whenever we get a chance. Fortunately, we live in an area where it's not too hot and not too cold... it's just right with a nice cool breeze! So it's perfect Maia weather! The sunlight can be a lil too much for her, so we got her some sunglasses that she doesn't seem to mind wearing. Plus they look so cute on her too!

Out and about at the grocery store

Ready to roll

Visiting their guardian angel, sister Marissa

One thing Maia doesn't like is her baths... except when we wash her hair! We couldn't submerge her until she was 6 weeks post op, so her baths mostly consisted of us pouring water over her, so it hasn't been very fun for her and she seems to really hate it.

Baths are overrated...

After being home for about 2 weeks, we noticed that Maia was starting to act differently. It was right after Father's Day when we noticed she seemed to breathe faster. So we put her oxygen on continuously even though she would fight us and take it off. Then the next few days after, she started getting discharge in her eyes. A couple of days it was bad where she couldn't open her eyes in the morning, so I called the advice nurse. Since Maia wasn't showing any other symptoms or signs, the nurse said it was most likely a blocked duct, and it would go away in a few days, and to just use a warm wet washcloth to clean her eyes. But her eyes didn't seem to get better. Then we noticed that Maia was sleeping a lot more than usual, and didn't want to play that much. She usually plays for about 2 hours before getting tired, but lately, she wanted to nap after only 15 mins of playtime. She also shied away from her bottle feedings, not wanting it at all. So I called her cardiologist,  Dr. Robertson, who scheduled an appt to see Maia. We didn't feel it was a true emergency, the 911 type, but we knew something wasn't right with Maia. The following day, I wasn't feeling so well myself! So now I started thinking that maybe I'm sick and I gave the virus to Maia... or maybe I caught something from her.

Eyes red and crusty... but still happy

So Gordon took Maia to her appt while I rested at home. She went from Dr. Robertson's office straight to the ER, then eventually the PCICU... good ol' 7 East! Apparently she had rhino virus, a typical cold virus that everyone gets. It was nice to see so many familiar faces, but then again, it really wasn't!! I kept telling everyone that this wasn't the reunion we were hoping for! As it turns out, Maia also has a collapsed lung to go along with the virus. So we knew right away that it would take weeks for her to recover, since heart babies have a more difficult time dealing with colds.

Loving the name sign!

Her sleeping beauty mask

It's very hard to see Maia in the hospital again. At home she was so happy and vibrant! Now she's sedated and paralyzed... and once again her tricky anatomy seems to complicate what's already complicated! For days there was no real change in her lungs. The Drs let us know that things typically get worse before they get better. They also let us know that Maia was bound to get sick sooner or later... there's no way to prevent it... the bottom line, kids get sick no matter how hard we try to protect them from everything! The Drs and nurses have reassured us that we did nothing wrong. We actually did everything right... because now is the time to try and treat her like a normal baby... to try and find the balance in our life, to be careful yet not be too careful. They were all so happy to know that Maia enjoyed being at home. Now that she's back in the hospital, it was time once again to celebrate another monthly birthday! Maia is now 10 months old and has spent each monthly birthday at the hospital, so this was nothing new... we joke that this was the real reason she got sick, she wanted to spend this monthly birthday at the hospital, it's what she's used to! But the goal is to bring her back home!

Get well kisses from big brother

Celebrated Maia's 10 month birthday with
churro cupcakes

A typical scene in Maia's room whenever
her oxygen sats dropped

Maia's current hospital stay has included many ups and downs. During her first few days, she was intubated and put on the ventilator to help her breathe and help her lungs. She was also put on some heart meds to regulate her blood pressure and help keep her oxygen saturation up. In those first few days, I was home and couldn't go to the hospital because I was still getting over my cold. It was during this time when her oxygen sats kept dipping lower and lower. They would eventually come back up, but only after some interventions by her Drs, nurses, and RTs. Such a scary thought to know her sats went as low into the teens I think, before slowly climbing back up to around the 50's. When I first came to see her, Maia's "normal" sat was around 60, but I was actually a lil bit surprised at how good she looked because I expected her to look blue! The nurse explained that Maia's body has adjusted to having lower sats, so that's why she didn't look blue. Over the next few days, they decided to try other things to help get her sats up, including putting her on an oscillator. It's a type of ventilator that literally shakes the body continuously so that the airway remains open. They were hoping this would make her gas exchange better and increase her oxygen sats. So they put Maia on her tummy and let her "shake" for a few hours.

Tummy time on the oscillating ventilator

It was actually kind of amusing! But after no significant improvement, they decided the best thing to do was to put her on the ECLS (extracorporeal life support) circuit. It's similar to the circuit Maia was on when she was a newborn and went into kidney failure. Since her heart is doing fine, this time she would only be on for lung support, to allow her lungs to rest. It also allows for her to be on lower vent settings. She was on this particular circuit for a couple of days before they switched her onto a newer ECLS circuit. This newer circuit is gentler on the blood, reduces the risks of clots and is the new and improved version of the older circuit. It also reduces the risk of necrosis, like when Maia's left fingers lost circulation and pretty much died. Fortunately, her fingers healed and only the tips came off. There's also a lesser chance of her getting jaundiced like before, since the tubing on this circuit is gentler on the blood cells and don't cause too much breakage of the cells. Before switching Maia to the newer circuit, they did a heart catherization to check her physiology and certain blood vessels. It turns out that a particular vessel seems to bypass the lungs and go straight to the heart, among other things they found. This doesn't really help out her collapsed lung situation, but it's good to know.

Back on the ECLS circuit

So Maia has been on the ECLS circuit for over a week now, but she's slowly improving. Her lungs are showing signs of improvement, little by little, each day. A few days ago, they changed her vent settings from volume-control to pressure-control and this seems to have helped. It was quite a display she had going last week with all various IV drips and pumps! All her meds from such a long time ago they had to put her back on... epinephrine, dopamine, milrinone, heparin... with the addition of antibiotics, her diuretics... not to forget her fentanyl for pain, her versed (anti-anxiety) for sedation, and vecuronium "vec" (muscle relaxer) to paralyze her. There's probably more, but I just can't remember them right now! Anyway, they've been able to wean Maia off of the heart meds so the focus has been on making sure she's sedated, paralyzed and comfortable. Once in a while Maia gets what they call a "vacation" from being paralyzed... they allow her meds to wear off and give her a chance to wake up a little bit. Usually, they allow her to move her fingers and toes, and also open her eyes. Not too much movement, but enough to let her wake up and give her a break from all the drugs. Once they see she's moving too much or that she's initiating her own breaths (seen on the vent), that's a sign that it's time for Maia to go night-night. With the help of diuretics, she has had great urine output, something that is always a concern. But she's been consistently peeing and is no longer as swollen as she was a week ago. In fact, Maia has been looking longer to everyone, as if she's grown taller during her time back in the hospital! Despite how sick she is, she still looks pretty good to us. It's sad that she can't be awake right now but we know it's for her own good. She seemed more irritated to be awake and strapped down, so sedated and paralyzed is probably better. Since she's been constantly sedated and is on the circuit, Maia also gets head ultrasounds each morning to make sure her brain is ok. Last week they had her hooked up to the EEG machine to monitor her brain waves, but they found nothing out of the ordinary.

Hooked up to the EEG machine
to monitor brain activity

The next step is still up in the air... her Drs are deciding whether it's better to keep her on the circuit with lower vent settings, or to take her off the circuit and just have her on higher vent settings. Once again, the Drs will be having ongoing discussions until they can all come to some sort of agreement about what to do. Until then... we wait patiently and continue to be by Maia's side as she recovers. Hopefully, it's only a matter of time before we'll all see her laugh and smile again....

Mighty Maia

Thank you all again for the love, support and prayers. We're all in this fight together and we are so blessed and grateful to have you all on the Mighty Maia Fight Team!