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Friday, August 27, 2010

BPD.. aka...Big Pain in the Derriere.....or "just keep swimming'......

So the best way I can describe BPD to anyone is to think of someone with emphysema and now think of my poor little 8 pound baby.....with emphysema. Here is a link with a very extensive description and outcome of BPD:


This disorder is extremely serious, and as we have seen, can be potentially deadly. If Thurston had a milder form, or if it resolved somewhat, he would have been home almost 3 months ago, around his due date which was June 4th. I have a bet going with my new Nicu friend, Questa(the coolest name ever) that her little one, whose due date is in 6 weeks, will be home before Thurston, and this will most likely be true. Her daughter was born at 26 weeks and weighed just an ounce more than Thurston, and has also has had some major and scary complications, BUT, she does not look like she will have BPD and actually weighs almost as much at 34 weeks than Thurston did at his due date(40 weeks). BPD takes so much out of a child that Thurston just burns more calories than he can take in, which is why he gains weight more slowly than most kiddos.

So yes they did put him back on the nasal cannula, but I have been extremely hesitant in posting this because, he is at the highest settings(5 liters) and his oxygen needs keep creeping up (in the 70s) so I am sure at some point, he may have to go back on cpap. If that is the case, we may have to talk about getting him a tracheotomy in order to get him home with a g-tube(two surgeries I just dread putting him through). If for some miraculous reason he stays on the cannula, then he would probably just need to stay put in the NICU for quite some time, he may even still be there by his March 8th birthdate. We of course are sad about our situation, and I try not to stop and think about it because if I do, I usually break down.

One of the hardest parts of having a child in the hospital for an indefinite and long time, besides the obvious(having him separated from you) is the inability to plan ahead. You watch as everyone elses' lives move forward....people take their spring breaks, then their summer vacations, enroll their children in dance classes, swimming lessons, preschools, etc. You are literally stuck in limbo. Chad and my anniversary came and went without as much as a harrumph, I dont even think we got each other cards, you just never know how the day is going to unfold, and then you just get so caught up in it all, you never get around to even belatedly celebrating it.....You cant really plan a vacation or even a short getaway, because you cant be away from your child in the hospital for that long. Hell we feel guilty when we skip a day here or there, due to illness or just pure exhaustion(you can only keep up this pace for so long before you get burnt out). You cant enroll your other child in anything because you have no idea when your other kid is coming home, and in Thurstons case, they have strongly advised us to keep Viola out of any kind of daycare, or any other activity that involves any close contact with other children and circulation of germs after he comes home which pretty much rules out, well almost everything. You also don't know when a crisis might hit and what little activities you do make you end up having to cancel (dinner date, birthday party) to go up and talk to the doctor, or just to see your son. Most people do not understand this pace, this crazy lifestyle, unless they have been through a very long hospital stay with a family member they have to see daily, for hours at a time. After 7 months of this whole ordeal(thats when we found out something was wrong with the pregnancy and then I had to go on bedrest)It has become very gruelling, unpredictable, tedious, scary and just plain draining.

I was just thinking last night I so wished we lived closer. Like 5 minutes away. I would be able to pop in several times a day on the weekends and try and find help here and there with Viola. The drive just takes a lot out of you.

So we are still no where near coming home, I wish I had more upbeat news about that. In the meantime, my boy is being well taken care of by his nurses who adore him. When I come into visit, sometimes Thurston doesn't even recognize me though and searches for those that take care of him day in and day out. That makes me a little sad, well alot sad really, but also grateful that his nurses truly treat him as if he was their own child, I couldn't be more happy about that. I keep trying to tell myself daily to, in the simple yet profound words of Dore from Nemo, "just keep swimming".....I just cant wait until we can finally reach the top of the ocean and both Thurston and I can breathe in a huge gulp of beautiful oxygen-filled air.


  1. Still thinking about you and praying for you. I'll be praying that Thurston "just keeps swimming" on the cannula. He is such a fighter; he can do it.

    How's Questa's little baby doing? I think about them a lot too. You kind of get attached to your NICU family and wonder how they are all doing.

    Well wishes,

  2. Is his birthday really March 8?? That is the same as Laurel. They are destined to be friends.

    We are all praying for you guys. We miss you so much. We are going to try to figure out some way to come and see you sometime soon.

    Love and kisses to you all

    Sara, Geoff, and Laurel Grace