Almost 1

We're just days away from Maia's 1st birthday... and many thoughts are going through my mind, some good, some not so good. Many thoughts that include flashbacks of what she's overcome, and also dreams of what her future may hold. She's come a long way. Many things have changed in her first year of life... Maia has physically changed so much with each procedure and surgery, and she's also grown from a tiny infant to a cute, chubby baby girl... and yet many things have remained the same, including her will to live and everyone's love for her.

After our last family meeting, it took me awhile to let everything that was talked about sink in. Dr. Patrick who was the attending last week, mentioned things like "quality of life" and "the end is near" and "she will never go home again." When I thought about what all that meant, it didn't really change much for me. It wasn't anything new that we haven't heard before... but yet hearing it discussed all over again was still very bothersome, and it hurt to hear. In some ways, it almost felt like they were ready to give up because it was only a matter of time before she would die. It was as if they somehow knew she wasn't going to make it in the next few days... it was a sad meeting. I guess taking into consideration what Maia's already been through and already overcome, I started to wonder if she had it in her to do it again... would she even make it to her 1st birthday? Should we not decorate her room? Should we not plan on having what we thought was an already small celebration? So many things started running through my mind... but every time I look at her, I still see so much fight in her. So I know we've made the right decision whenever we're asked what we want to do. Just like always, we will continue to fight... until she can fight no more, or until we feel she is suffering. Now is not the time to give up. We don't want her to be in the same condition, with no improvement, months from now... so we've made it known that we want to be more aggressive when it comes to her treatments. If she is to die, she will die fighting... but we will also keep in mind her comfort level. All that sounds pretty tricky, but if you know Maia and her personality, she lets you know what she wants or doesn't want, and right now she doesn't want to give up. She's always been very determined and quite feisty when it comes to letting you know her preferences.

"Sleep peeling" the tape off her face

Lately she's been very irritable and agitated, and for good reason. Although she loves for anything and everything to be in her mouth, one exception has always been her breathing tube. If she could pull it out herself, she would! And she hasn't stopped trying either. She's had it in her mouth for at least 2 months now and is showing no signs of getting used to it, especially since her top 2 teeth have come out! This is one reason her hands and arms need to restrained most of the time. Sometimes we'll let her loose and give her some time with her arms free, but almost always, she will attempt to grab either her breathing tube or the tape on her face that holds the tube. I've even caught her doing it in her sleep! She had managed to slip her hand out of the ties and was trying to peel the tape off her face. It was kind of funny to watch. In my opinion, having this breathing tube in her mouth is one of the things that makes her uncomfortable, which is why we've been trying to push for a trach the last few weeks. But her vent settings have gradually increased making it more risky to get a trach right now. Although getting a trach won't solve all of her discomfort problems, we know it will make her more comfortable and happy to get that tube out of her mouth. So we're hoping to she can improve enough and get her vent settings lower, so she can get her trach sooner rather than later. We also have to remind ourselves sometimes that she is a baby, and will still go through normal baby stuff... like teething. Since she can't suck on her fingers right now, her new soothing method is chewing on the oral care sponge! We usually just add a few drops of water and leave it in her mouth for her to chew on. If you take it away, she will look for it and throw a fit until you put it back in her mouth. Another thing that usually calms her down is putting her in prone position (on her tummy). Almost always it relaxes her and she'll just go to sleep.

Tummy time = nap time

Time for pigtails!

For the last 2 weeks, it seems like Maia's been stuck in a continuous cycle. Each time she gets irritated and mad, this causes her O2 sats to drop and CO2 to go up. She eventually settles down, but not always right away. So it seems like she goes through phases of getting better (more stable), then falling apart, then having everyone scramble to help her out, whether it be by giving her more meds or increasing her vent settings. Lately, this has been happening about once a day. It then continues daily and she spends most of her day having to recover from all that happened the previous day. Looking at the big picture, it's almost like she's running on a treadmill, not getting anywhere... and each day, her pace and distance slowly decreases. 

This leads me to the topics of comfort and care. It was also suggested at our last meeting to make comfort a priority. Taking that into consideration, we asked to have a team of her regular nurses put together. Not that some nurses are better than others, but after being there for almost a year, Maia has naturally developed an obvious bond with some of the nurses. They seem to know her better, know her personality, and know how to comfort her. Whether it's with the sound of their voice or the touch of their hands or even just the eye contact between them, they provide a sense of comfort, relief, and trust that doesn't happen with just anyone. Maia will almost always let you know by giving you a look, if she doesn't know you, like you, or trust you! It's somewhat difficult to describe, but it's one of those things that "you'll know it, when you see it." And we've seen it many times with the nurses Maia feels comfortable with. Since Maia has had problems keeping her O2 sats up, especially when she gets mad, it's a normal reaction to give her something (more meds) to help her recover. But lately we've noticed that if you just give Maia a few minutes to settle, and give her a chance to calm down, she's able to recover on her own without any additional "as needed" meds (PRNs). For us, seeing her nice and calm with good sats is better than seeing her all drugged up with good sats. Of course, there are times when all of the above doesn't work, and they have to resort to PRNs to calm her down and bring her sats up. But throughout her stay at 7 East, I think Maia's had just about every nurse at least once! All of them are great and more than capable of taking care of Maia. It's also a big plus that the nurses have a great sense of humor, because hanging around us all day, it's hard not to laugh with us sometimes!

To all the nurses, especially those at 7 East...

One reason I feel that we should continue to fight is that Maia is unpredictable, always has been and probably always will be. When you expect her to do one thing, she does another. Of course this unpredictability hasn't always been to our advantage. This is why her team of Drs find it hard to treat her because she seems to react differently to each chosen course of treatment! Which is why I feel people shouldn't count her out! You don't know what she's going to do next... all the times the Drs thought she wasn't going to make it, she did. Despite having all the odds against her, she's proven many wrong. So why should we stop fighting now? We should continue to fight strong, now more than ever... and if it's God's plan to have Maia stay with us, then we accept that... and if it's not, then we accept that God has other plans for Maia, better plans. 

I couldn't help but feel so sad after the last family meeting. It hurt a lot to hear that they thought Maia would never come home again, that her end was near. I remember how hard it was to hold Marissa in my arms and say goodbye, telling her how sorry I was that we couldn't take her home... am I going to have to do that again? I hope and pray that I don't have to. I guess that's why I continue to live day by day and try not to think too much or too far ahead. If these next few days or weeks with Maia end up being our last, I don't want to spend them being sad and always crying. Instead I want to be happy... and show Maia how much she's loved, and how happy she's made me, and everyone around her.