The Long and Winding Road

This Friday, Teri will be 36 weeks pregnant, and the days can't go by fast enough for her.  She has weekly appointments now every Thursday with her doctor to monitor the baby and check on Teri's well-being. In addition, she has been going to the Mayo Clinic about once a month or so, which are appointments that are specific to her health and to review what infections her lungs are breeding as of late, her blood levels, meds, etc.

Last Friday we went down the Mayo for her last appointment there prior to delivery.  They didn't have a whole lot to say for right now other than "just stick it out a couple more weeks to keep baby out of the NIC unit".  They consider the baby to be "full term" at 37 weeks, so anytime a baby is delivered before that, they automatically put them in the NIC unit to monitor them for a couple days.  They also formulated a plan on what meds they would put her on immediately following delivery.  The plan is to put another PICC line in before she leaves the hospital, then put her on another anti-biotic(s) and possibly lipids again. I found this video online on what a PICC line is exactly in case you are interested: http://www.mayoclinic.com/health/picc-line-placement/MM00781

What is killing me right now is Teri's struggle to maintain her weight.  She is almost 20 pounds lighter than what she was at full term with Ari.  Even at 35 weeks, she weighs 1 lb less than when she got pregnant.  And when she delivers, the weight of the baby and the other "stuff" will drop that by about another 10 lbs.  This is by far the skinniest I have ever seen her, and it is kind of scary.  When I get home at night and on the weekends I try to get her food and ask what she wants to eat all the time, but as with anyone who feels sick, your appetite is diminished so it is hard to force.  She does really try, but ends up throwing up some of her food too.  An example of this happened last night, I made spaghetti (because Ari said she wanted it) for us, and she did pretty good eating it, had a snack after, then at around 9:00p.m. started coughing and threw up most of it.  As with everything that CF brings, we both feel helpless when these things happen.

As I just said, she has been coughing more since being off the anti-biotic, and now in addition to that, she is trying to get over a cold she got the end of last week (which Ari has too).  Luckily I haven't gotten it yet, but we really want to get through that before we bring a baby home.

They are still planning on inducing her at 38 weeks if she is healthy enough to make it to that point.  If they think things are getting too stressful for her or if the baby is under too much stress, they will try to induce earlier.  Like I was saying, the magic number is 37 weeks to avoid the NIC unit, which is 10 days from today.   The goal is to NOT do a c-section too since the recovery time would be longer and harder for her in the condition she is in.

So for now, we are focused on taking it day by day and hoping that the next couple weeks go well enough to kick-start a good recovery after delivery.  I just really want Teri to get back to feeling normal so she can fully enjoy our latest addition to the family.

I think Ari knows the baby is coming soon, because she talks about him multiple times a day without us even bringing him up.  She also loves to play in his room (which we are trying to keep to a minimum).   Here are a few of the latest pics I have of her...

Putting her baby dolls in his crib to sleep:

Being her goofy self, playing in baby's room:

That is a bowl of fake bananas she "made", and is trying to eat them while wearing her chef outfit and jewelery and playing her Dora video game... And they say kids are over-stimulated...

                               

Back Home

I am back from the Bahamas, and it feels good to be home.  My trip went pretty well, but it was a long week of work actually.  I was able to get outside during the day to have some fun just two times during my entire time at the Atlantis.  The first time, I went out with my a buddy of mine and hit up the waterpark.  I haven't been to a waterpark probably since I was in high school, so that was pretty fun.  Plus, some of the slides were actually pretty intense.  The other time I got out was during my last day there, and I went outside and laid on the beach for about 40 min... and got sun burned, ha.

Here are just a few pics from the time I was able to get out and explore the resort.  It is definitely an amazing place with lots to look at.  Just walking around the property, there are little bays and lagoons full of marine life (as you can see from my pics).  Even a couple of the waterslides take you through an aquarium tunnel full of sharks.

 This is the view from my room.

 This is also taken from the balcony of my room, in the lagoon below there were sand sharks swimming around.

 That area connecting the two towers is actually a room that costs something like 10k a night or something ridiculous.  The rumor is Michael Jackson used to stay in that room a lot when he visited.

Pretty nice place as you can see.  Although I was able to visit a great resort for a week, that is a long time to be away from a 2.5 yr old little girl and a beautiful/fully pregnant wife.  Needless to say, I am really glad to be home and anxious for our little fella to come out.

Speaking of him, he is still growing well.  At Teri's appointment on Thursday last week, they estimated his current weight at 5 lbs. 4 oz.  It is great to hear this information because since we kind of worry about pre-term labor, it is is good to know he is at a fairly healthy weight if things happened sooner than they were supposed to. We are now just over the 34 week mark, so that fact Teri has made it this far seems like a win already.

Another great thing is that Teri is doing her last Vanco treatment as we speak, and her pic line is coming out tomorrow.  No more getting up multiple times in the middle of the night to un-plug / plug-in IV meds.  There is the fear now of her infection growing back and her coughing getting bad again in the next couple of weeks (which will happen eventually, it is just a matter of how quickly).  Like I said though, it is great being at 34 weeks and having the option of the doctors getting the baby out safely if things get real dangerous for Teri.

Yesterday we decorated the baby's room and Ari's room with an art project Teri did with her mom while I was gone.  She got the idea from Pinterest where you buy paper that you use for scrap-booking and frame it as art on the wall.  Pretty cheap way to make the room look decorated.  Here are some pics of Ari showing off her's...

 And here are some pics of the new baby's room (work in progress)...

 Ari likes to put her stool against the crib and tuck her baby in to go to sleep.  Should be interesting when there is a real baby in there, we will really have to watch her to make sure no blankets are put over baby's face.  A great example of her maybe being TOO helpful when baby comes.

We are just going to relax for the rest of today, and it is back to the office tomorrow into our old routine.

Happy Birthday X 2

I have been crazy busy at work this week leading up to this conference I am leaving for on Saturday.  I will be gone until next Thursday, so I am praying that there is no downward baby movement while I am away since I likely wouldn't be able to get back in time. Kind of freaks me out to leave for this long at this stage in the game, so I am trying not to think about it a whole lot.  It will be even harder to not be able to see Ari for that long too.  We will be talking on Google Video Chat every night, but it isn't the same obviously.  One of the many reasons I love  technology.

Teri has been feeling the stress of late pregnancy.  The Vanco and lipids are still helping in that the vomiting has subsided, although she still has a cough that looks painful given her large belly. All I want for her is a good night sleep, which unfortunately will not improve when the baby actually comes out and into our lives. I am actually really looking forward to having this baby so Teri can fully focus on her health and the doctors can treat things more aggressively not having to worry about the baby.

Speaking of treatments, there was very exciting news recently about a new CF drug that was approved by the FDA called Kalydeco.  The drug is described as "a new oral medication for people with CF with the G551D mutation of CF. It is the first drug available that targets the underlying cause of CF – a faulty gene and its protein product, CFTR."  This is an extremely ground-breaking medication for CF, however Teri does not have the G551D gene so it would not help her.  There is hope though, because there is another similar drug in the pipeline (currently in phase 2 of 3 trials before gaining approval) that does the same thing for the F508del gene (aka Delta 508) that Teri has, along with over 90% of CF patients. Based on how long it took for Kalydeco to be approved, it will probably be approved by the FDA around mid-2013 assuming all goes well (which it is so far).  Really exciting stuff, but we'll see how much it costs.  Right now they are saying Kalydeco will be $250k for a month's supply... yea, insane.  I guess that just gets passed on to the insurance companies if prescribed, but seriously, that is a problem. 

Last but not least, it is both Teri's and my mom's birthday today!!  Having these on the same day makes it way easier for me to remember every year.  I gave Teri her gifts last night, and we are going to dinner and a movie tonight to see "The Vow" (her pick).  We got VIP seats at a new theater nearby, so we'll be in the back behind glass so you can't hear everyone chomping on their large troughs of popcorn, and we get reclining leather chairs.  I thought it was funny when I went on facebook this morning, I saw this in the top right corner as another reminder...

Enjoy your weekend everyone. I'll probably have some pics of Atlantis in my next post, so stay tuned.

Another Week Closer

Things have calmed down a bit through the rest of this week.  Teri has been improving since being on the Vancomycin and Lipids.  Her cough is still there to a certain degree, but a lot more mucus is getting out, which is a great thing.  It means things are getting cleaned out.  It is kind of a pain taking the meds with how it all times out.  She has to hook up the Vanco before she goes to bed, set an alarm for when it gets done (lasts 2.5 hrs), wake up, detach the Vanco, hook up her lipids (which is push in through a different machine), set her alarm again for 6.5 hrs from then, and usually by then she has about an hour until Ari wakes her up.  Not easy, but it actually allows for a lot more sleep than before.

She had a OBGYN doctor’s appointment yesterday where they did another ultrasound as well as a few other tests.  We’ll get some of those test results back today I think, but everything they could see at the doctor’s office looked great regarding the baby.  He is still measuring perfectly and there really had no concerns from what they could see.  We both love hearing that. 

They also did the 3D ultrasound and gave us some pictures.  We did this with Ari, but they looked kind of weird and we didn’t really like it.  Here is Ari’s when Teri was only 23 weeks along:

Now to introduce our baby boy…

This picture seriously amazes me.  I could not believe this when I saw it.  It looks clearer in person, this is little blurry because it is a picture of a picture.  It looks like a real photograph almost.  The nurse said he was in a perfect position to do this kind of picture.  I have seen a lot of these types of pictures, but never one this good.  I keep opening it and looking at it.

It has been a long week for me as well at work.  Our company puts on a conference every year where they invite all the hotel owners and operators for the brands we run (Radisson, Country Inn & Suites are the majority), and I put together a lot of presentations for it.  It is in a different location every year, and this year it is at the Atlantis Resort in the Bahamas.  I know, tough life.  It actually is a ton of work leading up to it and I am exhausted having worked almost every night this week, and the conference is just as crazy up until minutes before the presentations.  I’ll probably get one night to relax there with some of my friends from work that will be there, but I doubt I will get to the beach.  At least it will be warm outside, however at last year’s, I didn’t go outdoors for 3 days straight, so I am hoping for the best.  I can’t complain though. I leave Saturday Feb 11th (a day after Teri's birthday thank goodness) and get back the 17th (so I miss Valentine's Day, for the second year in a row since the conference is always over Feb 14ht for some reason).

Looking forward to a weekend of hopefully sleeping in and relaxing a bit.