Saturday, October 19, 2013

Uncharted Territory...

Every Thursday for the past few weeks we've been having meetings with Maia's team of doctors and nurses. They mainly consist of surgeons, pediatric cardiologists and nurses, renal doctors, and also a social worker. They are very important and informative, and these meetings also help to make sure everyone is on the same page and kept up to date about what's going on with Maia.

At the last meeting, we discussed Maia's kidney function and prognosis. Everyone was extremely pleased to see her make urine again. Although it's not yet enough to be consistent, the renal doctor said it takes a few weeks for that to happen, so it's important to keep her on the peritoneal dialysis. However, they all wanted us to understand that Maia is still very sick. Her recovery has been progressing little by little, especially this last week, but they all wanted to make sure we understand that Maia is in a fragile state, one in which mortality was very much possible at any time. Each hurdle (both big and small) that she's come across and overcome, has set her further back in her recovery... and they're afraid that with anymore hurdles, she may not have the strength to recover and overcome them. In addition to this, one of the cardiologists mentioned that they found Maia's heart condition paired with her kidney condition to be extremely rare. The team of doctors at UCSF has been in contact with their other colleagues from all over the world and they have not found a similar case to hers!! Whether or not it's because other babies haven't survived or there has never been a baby with a similar condition to Maia's, it seems like the doctors are dealing with something unique. I guess that's why when I tried doing my own research on Google, I didn't find anything! Every baby seems to have their own set of CHDs with no two alike... and babies with similar conditions have completely different recoveries. I call it "uncharted territory" since they cannot find a case to refer back to... but the team of doctors and nurses are ready and willing to do whatever it takes to help Maia... however, they also wanted to reiterate that we have to keep in mind she's walking a fine line between getting better and death. 

Considering everything Maia has already been through, and now finding out that there hasn't been another baby with her condition, she has confirmed what we already knew... she's our little miracle baby. Even the doctors and nurses are sometimes surprised with how well she's been able to handle and tolerate the setbacks in her recovery. It's truly amazing to see how much fight she has in her! She's very alert and loves to open her eyes wide to take in her surroundings. All the nurses have grown to love her, and I'm sure Maia loves them just as much.

Another thing that was mentioned was our family's spirit. They wonder how we walk into Maia's room everyday with smiles on our faces. Why not? We know that nobody wants to be in our situation, but there's no use in having a pity party for ourselves and focusing on all the negative things in life. Doing that would be a waste of time and energy! Plus, we feel that Maia feeds off of our positive energy and feelings... and so do the doctors and nurses. If Maia is willing to fight for her life, then of course so are we. I feel that as parents, we can only do so much... so we must put our trust in the people that take care of her. They are all trained specialists that know how to take care of babies like Maia, so I'm sure it makes it easier for them to do their jobs if they know the parents trust and support what they're doing for the babies. Gordon and I have always been strong, positive people, and we can see that it has been passed on to Maia. It makes things easier on everyone, including ourselves, to be positively realistic about our situation. I'm reminded of what our genetic counselor once told us... that both our daughters, Marissa and Maia, chose the right people to be their parents... they knew we would be strong enough to handle this tough journey! Of course it also helps to have a strong faith in God and a great support system of family and friends!

Although to many people we handle stress well, we are only human and can only take so much. The thing that has caused us stress is Gordon's work. On Friday, he was informed that he has to go back to working full time hours starting Monday. We are thankful to them for the time he had off and the time they let him work part time, but our journey is not over. Gordon understands business and that it needs to be run. What he's struggling with is that work has been so slow that people at work are being sent home by lunch time. Yes, everyone has a different role at his work but slow is slow. They told him that the OSI (customer service scores) of other coworkers are directly related to Gordon not being there full time. What happened to everyone working as a team?  We really don't want to stress out about this too much because we don't want to complain, but "family is first." He's going to try and work full time and visit Maia at night but if it's too much stress and Maia's conditions worsens, we agreed to explore our options.

Maia has come a long way in her short life, proving some people wrong along the way... she's still got a long way to go but she's proved to everyone that she's a fighter!

No comments:

Post a Comment

Please leave us a kind message