Things are really looking positive as of this morning. Both Lila and Mandi are breast feeding which is awesome. Also yesterday I got to hold Lila for the first time which kicked major butt and she also had her chest tube removed. What does this mean? Well hopefully she will be able to leave MGH and come over to Newton-Welsley to be with her sister and finish out her treatment. I guess the best we can hope for is that they are home by the weekend, but it may take as long as next week.
What and insane experience this has all been. Certainly I feel Carrie and I have held up much better than I would have thought. Carrie has been especially string given the fact her body is raging with post-pregnancy hormone madness. What gets me now is that there is a couple who had twin boys born on the same day, under the same circumstances and they are experiencing the same thing as us. They have one boy here and one at MGH with very similar issues. We run into them all of the time and chat about what is going on, I feel so bad for them for some reason and perhaps I should be feeling that for myself, but I don’t. I guess perspective is the answer to that one.
Now on to medical care, what a pain. I mean obviously the doctors and nurses are doing a good job, because the girls are getting better. However you have to be such an advocate for your child. Most of the staff want to be as clinical as possible, watching the numbers and going by the book. This is understandable but observation and experience goes a long way. I have noticed that the best doctors and nurses are the ones who take observation and experience into account, who bend the rules to accelerate recovery. There is also the parent factor, if we push hard enough, they listen to what we want, but that can be stressful sometimes. Anyway its an annoyance but not necessarily are huge problem. We have always and will always attempt to do what is best for our children.
So if the girls are together this afternoon, I will take some pictures and do another post. Thank you all again for being so wonderful, we really do like the feedback and it makes us feel better that so many of you are pulling for us. i wish i could say I was religious and was praying, but I am not. I have faith in the universe and my childrens’ will to survive. I have faith in my family and friends that they they will be there to support us. Faith in ourselves and positive action and feeling will get us through. Its amazing how far a smile can throw you.
Tags: lila, mandi, recovery
Entries (RSS)
Well said, Jason. Thanks for keeping us all updated and really sharing yourself. You 2 are incredible parents and positive forces. You know I share your beliefs about the universe and the benefits of strong, positive advocacy. I know it’s also in the girls. I know you’re enforcing it when you hold them. I see the strength and the progress in the latest pictures of Mandi. I also know that with your large family, thier friends, your friends… there are hundreds out there who are praying (just on that off chance).
Thanks Rick, your words mean alot. I just got wind that Lila is on her way over so we are very excited!
We continue to send all positive thoughts your way . I am currently focusing on the smiles on both your faces when Lila and Mandi are reunited today. Every small step is a huge step in the right direction. Love to you both.
SO glad to hear the chest tube is out. Are both girls home now?
It’s so funny Jason you say that about the praying when I left my last post i wasn’t going to say anything about praying, but it makes the rest of us feel better that we are. Thanks for the updates it saves alot of phone calls!!
Nancy,
Prayer is fine and I wish I had the ability, but I don’t which is why I addressed it. I would never want to take that from anyone and we are glad to hear that people are pulling for us, because no matter what belief system you have, positive thoughts work.
Jared,
Nope not home for a few more days, but at least they are in the same hospital.
Jason, I understand what you said about being an advocate for your child when it comes to the care they get in a hospital. I did it many times. A parent always knows their child and/or children better than some nurses and/or doctors. Continue to be that advocate, as I’m sure you will. I’m so glad the girls are getting better. Your strength will only continue to grow as they improve. Love to all.
Aunt Mary
So glad to hear that Lila is back to be with her sister. Love you all and am thinking about you all the time.
OH YEAH the girls are back together. That makes me so happy. You two have really been an inspiration to all of us. Thank you for keeping us in the loop during this very challenging time- for those of us who are not there it makes us smile to know things are looking much more positive. Hugs to you and the girls and the boys at home.
Amy, Mark and Avalynn
What special and memorable time in all you lives and to memorilize in this venue has been so uplifting.Thank you Jason for being such a techno guru so we can share in your joy. We love you all and wish the rest of your lives you’ll look back and wonder where the time went. Enjoy every second with your little miracles and God couldn’t say it better herself!