The Hodgson Family

Welcome!

Welcome to my blog's new home.  If you are looking for pictures, there is a link just to the right of this post that will take you to my photo albums.  So far, I've posted pics of Braychan, Conal, Cole, and my apartment. 

If you are interested in reading about my life, read on.

I have transferred all of my old posts over from the Carepage, so you can always go back through the history if you need a refresher on all the madness over the life of my blog.  I included the description of TTTS (the complication I had during pregnancy) at the beginning, and I think I might also work on an ongoing medical-terminology page with abbreviations that I use frequently.  I know (firsthand!) how frustrating it can be not to know what people are talking about when they use the abbreviations! 

Anyway, I hope you enjoy your time here, reading about everything going on in our world!

Braychan is home!!!!!

Apologies for the long wait for this post, but things have been very busy around here!

After 14.5 weeks in the hospital, Braychan came home with me on Thursday, 5 November.  He is officially the best birthday present ever.  He's doing well, and he's gained at least 5 ounces since he left the hospital, so he is now 5 pounds 13 ounces!  He is on a small amount of oxygen, and he will be for quite some time, it seems, but we're getting more and more comfortable with dealing with the tanks and tubes in the house. 

Cole is very curious about Braychan, but he hasn't spent much time getting close to him.  He loves rocking the carseat (that used to be his) when Braychan isn't in it, and he frequently brings me the pacifier that we keep in the carseat -- such a big helper.  Today, while I was holding Braychan, Cole came up and gave us both a hug.  He is a real sweetie.

Last week was busy for other reasons that were not quite as happy, too.  The mortgage bank we had been trying so hard to work out our short sale with decided to foreclose instead.  While it was a terrifying, frustrating, and humbling experience, at least it is finally over, and we don't have to worry about selling the house anymore.

The most frustrating part was that we had almost no notice.  When I received a letter two months ago saying that foreclosure was pending, my realtor said that it was simply procedure and not to worry about it.  Since that time, my mail has been forwarded all over creation, and when I opened my thrice-forwarded mail last Monday, I came across a letter sent about a month ago stating that a foreclosure had been scheduled for the Thursday morning.  (Yes, also my birthday.)  By that time, it was too late to reverse the decision, though not for lack of some serious persuasion on our part.  We found out for sure that they had turned down our appeal on Wednesday morning, and we weren't sure how much time afterward we'd have before we had to be out -- as in, it was possible that they could expect us to have our stuff out by the next day. 

My good friend Kate, who lives in the DC area, was able to help organize the move, along with her husband Brian and Charles.  We managed to get some movers to come over that same day and get everything out of the house and into a storage unit in Herndon.  Then Charles left to stay with his parents for a few days, and he's on his way here to Colorado now!  He should be here late Wednesday night.  So I guess you could say that we're just trying to make the best of a tough situation. 

Anyway, like I already said, there's too much good stuff going on to be feeling bad about the other stuff!

More Good News - 10/27/9

It's only a few hours now until Cole arrives with Jim and Diane here in Denver.  I'm going to pick them up at the airport early Wednesday morning, and we will go straight to the hospital from there. 

The crazy thing is, Braychan is having his hernia-repair surgery tomorrow morning also.  That does mean that he'll have to be intubated, but the nurses told me that most babies are extubated before coming back up from surgery.  His recovery should only take a couple of days, and when he feels better he gets to come home!!!!!

He has been taking most of his feeds by bottle over the last two days or so, which is great, but it's also troubling because I feel like his feedings are being advanced so quickly while I haven't been around as much to breastfeed.  That is going to make it that much harder to do when he comes home.  I'm sure we'll make it work somehow, though.

Braychan has acclimated so well to the altitude and resulting change in oxygen need that they removed his sat probe (measures how much oxygen is in his blood) today!  It seems like when things start to happen, they just don't stop.

So let's back up here for a minute and celebrate two more HUGE milestones coming up faster than I can believe: Cole coming to live with me, and Braychan coming home soon -- possibly within the next week!  I'm having a hard time really getting it through my head that this insanity is nearly over, and the "normal" part of life might be re-emerging.  All we need now is a way for Charles to join us, and we'll have it made.  And none of us will ever again take for granted the fact that we have each other near.  One of the million lessons I've learned from this experience.

Saturday, 24 October 2009

So we finally made it!  Braychan and I arrived in Denver yesterday afternoon, and he’s adjusting well to his new surroundings.  AirLife Denver and Presbyterian/St Luke’s Hospital split the bill for transport, making them my favorite people of the week.  The flight was blissfully boring, and checking in to the hospital was very easy.  It has taken a little adjustment on my part, but that isn’t a big deal.

Like Seattle Children’s, cell phones are not allowed in the rooms.  Also, Braychan shares a room with two other babies, and the room is smaller than the one we had at Evergreen just for one baby.  But that was an unusual setup, to say the least — most hospitals don’t have space for parents to room in with the patients!  Anyway, it was funny seeing Braychan hear another baby crying for the first time (or at least up close and personal wailing) -- his eyes got all wide and he looked around, trying to place what that sound was!

One more big hooray for getting the most difficult item off the checklist of “Things To Do Before The Whole Family Gets Back Together Again For Good”!!!

And on Wednesday, Cole arrives here with Jim and Diane.  Unfortunately, the hospital is only allowing grandparents and parents to visit because of flu season, but hopefully Braychan will be home soon enough after Cole arrives.  I am looking forward to having a little “Cole and Mommy Time” before Braychan comes home, so it isn’t such a huge transition for him.  And because I miss him like crazy!!!

I posted some more pictures the other day, mostly from bathtime.  They are really cute.  Enjoy.

HOORAY!!!!!!!!!!!!!!!!!!!!!!!!!!!

Yes, it is finally happening, for real!  The transport company agreed to split the cost with Presby St Luke’s, and they are working on a schedule for us.  I’ll post more details when I get them.  Thank you all for your finger-crossing and prayers — it worked!!

Thumbs Down, Insurance Company! Boooo!

I got the call this morning that the insurance company denied our request.  I knew that was a possibility, but it really seemed like it was going to happen.  They don’t have any explanation for the denial, except that they don’t need a reason to deny.  Fortunately, we had care rounds today (the big weekly conference with all his caregivers, down to the pharmacist and dietitian, etc) and everyone said that they were not taking no for an answer.  We have started the appeal process with the insurance, and we’re researching some other opportunities.  The doc was on the phone with the medical director (who makes the call for the ins company) for a good portion of the day, and he’s apparently a pretty tough guy when he needs to be, so it’s good that he’s on our side.

It is good, though, that the transport was scheduled, because it resulted in another potential avenue for us.  The representative from the transport company called our insurance case manager to find out what was going on and why the flight was cancelled.  Carol (case mgr) explained to Terri (transport) our story, and told her that we’d been denied.  Terri was outraged, and wanted to throw in her support in any way she could.  Carol explained that the best thing she could do was convince her company to fly us out gratis, or for a seriously reduced rate (the reason this is such a big issue is the cost of transport – usually around $20,000 -$30,000).  Terri said that they had a meeting tomorrow (Thursday), and she would do her best to convince them to do just that!

We’re also looking into charities through Evergreen or the hospital on the other end, Presby St Luke’s.  We’re trying to figure out if there is a way that we can pursue a legal suit to make them pay based on our case.  We’re researching independent organizations that fund unusual hospital-family-situations like this.  Someone even asked whether we’d talked to any local media outlets, since the healthcare debate is such a hot topic right now: it might get us enough exposure to either pressure the insurance company or have some individuals or organizations donate enough money to cover the costs.  We’re not sure what we’re going to do, but we are absolutely determined to get it done.

Yes, it is incredibly frustrating, but I’m trying to focus on what a great job Braychan is doing.  That we’re even talking about all this is such a big indication of his progress.  He hit the 5 pound mark today!  And I gave him his first bath.  (Pictures will be posted tomorrow!!)  How can I waste my time being angry with a faceless insurance company when I have so much to be grateful for, and when I’m so busy admiring my miracle boy?

That said, I will end with this: if ever there was a time when you could help, it is now.  If you have any connections to scary lawyers, powerful people, news media, charitable organizations, anyone in the medical transport community, anyone in the insurance industry, or any other resources I might need but not know of, please do anything you can to help us get this taken care of.  Our family has been apart for far too long, and we are all starting to show signs of the wear and tear that comes from an extended trauma like this.  (Incidentally, we arrived three months ago, yesterday, if you can believe it.)  Anything you can do to try to get us reunited would be appreciated beyond words.

Exciting News...Maybe...

Well, it isn’t quite official yet, but we have a transport set up.  The hospital in Colorado has us tentatively scheduled for transport at 11 on Thursday morning.  Yes, as in tomorrow, more or less.  The insurance company still has to approve it, but we should find out what their decision is in the morning.  We could be in Colorado by Thursday night!!

This is all contingent on the insurance company’s approval to pay for the transport team to come out here to Seattle from Colorado, pick us up, and fly us back.  The hospital on the other end has a bed for Braychan, and they are ready for us to get there Thursday.  I can fly with the transport team, thankfully, and I’m allowed to take a fair amount of stuff along for the flight, which is really helpful.  

It looks like Jim and Diane will bring Cole out next week, on Wednesday.  Mom and Bob were planning to come out here this weekend (Saturday), so they would then drive my car and all my stuff back to Colorado.  It’s pretty crazy that this might actually be happening, and so quickly!  But we’re getting pretty good at rolling with the punches these days.  

I’m going to try to update when I get more information, but I might not have much time if they approve the trip.  I will let you all know as soon as I can!!

Keep your fingers crossed for us!!

Monday, 19 October, 2009

I know it’s been quite a while now since I’ve made an update...aside from steadily growing, Braychan hasn’t had much going on recently.  (And that’s great news!)

He’s up to 4 lb 12 oz and 18.5”, and you can see from the pictures that he looks more and more like a (small) full-term baby every day.  The doctor suggested the other day that he was getting to the developmental point when having a crib toy or two isn’t a bad idea, so one of the nurses lent us her Rainforest Soother, just like the one Cole has had since he was born (and still likes!)  I also got him a mobile today, which he seems to really like – it has a canopy with a projector, and music or heartbeat sounds.  The canopy part is great, because it actually shades his eyes a little bit from the light over his bed!

They turned down his oxygen a little yesterday – from 4 liters down to 3, and he seems to be tolerating it well.  They prescribed him a diuretic, which is intended to improve his lung function, and it seems to be working at least a little bit.  Because he’s still on oxygen after 12 weeks of life (can you believe that?), he is considered to have chronic lung disease.  That doesn’t necessarily mean he will have chronic lung disease for life, but it is a possibility, particularly for the first two years.  We’re still moving in the right direction, though, and this is a very common classification for babies born at his size and gestational age.  

We got news the other day that the transport is very likely to be paid, either by insurance or by a charity lined up by the insurance company or hospital.  What a relief!  Now the only thing keeping us here is Braychan’s oxygen need.  Once he’s down to .5 L and stable, we’ll probably be able to get transferred pretty quickly.  It’s hard to say how long that will be, but I would guess that it will be a few weeks, maybe a month.  I’m trying not to fixate too much on a date, because I don’t want to be incredibly disappointed if that date comes and goes, but it would be such a nice birthday present to be with two of my three boys, as well as my mom, Bob, and Heather!  

I’ll keep taking lots of pictures, so that you can see his amazing progress.  It’s getting hard to connect the dots back to when he was the tiny little guy in the isolette, nearly three months ago!  

New Pictures!!!

I posted some new pictures of Braychan in his Big Boy Crib.  An update is coming soon.

Wednesday, 10/7/9

Braychan is in an open crib!! And he’s wearing baby clothes!!

Monday was a big day here, because our little guy made a HUGE step.  He was moved out of his Giraffe bed into an open crib around 6:00 Monday night, and he has been keeping his temp up, which is what will keep him there.  Now that we have said goodbye to the closed bed, we have a little more freedom of interaction.  I can pick him up whenever I want.  I’ll be able to give him baths starting tomorrow.  I can dress him in any clothes I choose.  I can soothe him when he cries without having to “let myself in” the bassinet first!  I can give him kisses whenever I feel like it, and that is pretty much all the time!!!   It is such a big step, with so much more ability for me to be Mom.  I’ve been involved in his care all along, but this is the point where things have switched over from the nurse, to me being in the driver’s seat.  

Braychan looks positively adorable in clothes, too.  Naturally, I’ve misplaced the transfer cable for the camera, so I don’t have pictures quite yet, but I will very soon.  There are a few on facebook (for those of you who are facebookers...if we aren’t friended yet, you can go to my profile here and connect), but they’re from my phone so they are not ideal.  I promise I’ll iron out this whole camera-cable thing soon, and I’ll get some exceptionally cute pictures posted.  

It’s so amazing to me that we have been here ten weeks now.  At the beginning, I don’t think I ever even considered that there would be a time period when things were starting to wind down, and all of a sudden here we are.  Less than five weeks until his due date now, I am starting to get things rolling in the transfer/discharge direction.  I’m working with the insurance company to try to get a medical transport approved, so that we can fly him to a hospital in Colorado (probably Colorado Children’s, in Aurora).  I’m working with the nurses and doctors to figure out the (many) logistics of discharging/transporting a preemie like Braychan.  For example, I hadn’t put any thought about the anticipation of change in oxygen need in a preemie who is going from sea level to 5000 feet.  If he were discharged from here (and then I flew/drove with him to CO) we would have a very serious level of uncertainty about what his oxygen need would be when we arrived in Denver!  One more reason to add to the list of why the insurance company SHOULD pay for it.  

Things tend to move in a hurry-up-wait-hurry-up-wait fashion around here, so who knows when that would end up happening.  The idea is just to get the idea in everyone’s heads, so that when the time does come, all our ducks are in a row!  But with all the paperwork, I’m starting to think that I need to hire myself a secretary!

Friday, 10/2/9

Braychan has had an excellent week.  He is starting to hit some milestones, and he’s getting pretty close to some others.  

He’s gaining a bunch of weight – he’s 3 lb 10 oz now!  Soon (probably next week) he’ll be able to move to an open bed, and then he’ll be able to wear some of the cute clothes people have sent for him!!

Now that he’s 34 weeks (that is, he would be 34 weeks’ gestation if still in utero, or his adjusted age), he is developmentally ready for breastfeeding.  We’re starting out slowly, just once or twice daily, and eventually — probably once we’re out of here — I’ll be able to give up the pump for good (hooray)!

The most exciting news, though, is that there is just so little news to report.  Aside from a hernia (incredibly common in preemies), we’re really only working on the lung function and getting bigger.  There is no hard-and-fast discharge criteria, so it’s hard to forecast exactly when we’ll be out of here, whether the measure is time, weight, or his oxygen need.  It would be pretty unrealistic to think that we’d be out of here before the due date (11/8), but sometime within the next few weeks after that is reasonable.  Like I said before, though, I’m really trying not to get any date stuck in my head, because I’d hate to be disappointed to see it come and go.  I’m just happy to see him doing so well; I’m not willing to rush it just to get out of here.  

Now that I’m back here, Mom has gone home, and I don’t have any visitors scheduled for a while, I’m enjoying getting myself back into the routine.  That is not to say that I didn’t enjoy all the visiting, because I certainly did, but having more consistency in my daily life is nice too.  

Mom and I had fun during her trip.  We went out to Snoqualmie Falls, which was beautiful.  There was a restaurant there that has a cheese cart, so of course we went there.  The cheese was delicious, and naturally, one of the servers caught me sniffing the stinky cheese on the cart...What can I say?  I really love cheese, and the stinky kind is my favorite.   Aside from the Snoqualmie Cheese Experience, we didn’t do much but relax and hang out with Braychan.  It was a lovely visit.