Sinus Surgery This Friday

We are over 7 weeks in, and I think our sleep schedule is finally improving.  A couple weeks ago, Jameson sort of took some steps backwards and was starting to get cranky pretty often and wasn't sleeping as well.  After his feedings, he'd get upset and not want to go back to sleep for at least an hour or two, and he was still eating every 2.5 to 3 hours.  We tried most of the common solutions, and the gripe water worked the best usually, calming him down within a few minutes, but it is very temporary and wears off somewhat quickly.

As I said though, I think we are making progress as the last 2-3 days he has been eating every 4 hours on average (sometimes 5).  That extra hour is a step in the right direction, and definitely makes Teri's day a little easier.

Her days are going to get a little harder though come this weekend.  She is having sinus surgery (as I suspected she might need in my last post) this Friday May 4th down at the Mayo.  I will heading down there with her to help her out while my mom, Cassie and Tiffany watch the kids, which should only be for the day.  As I said before, she has had these before, and the recovery is fairly quick as far as surgery goes, but not fun. They have to put her under, so obviously she will be groggy for awhile afterwards.  Also, I think every time she has had it done, she vomited blood when she woke up because it sort of drains back into your stomach while they are doing the surgery .  Sorry if that is a little gruesome, but this isn't a bakery... I'm not going to sugar coat it.  (Heard that one this weekend, I've been dying to use it).

The sinus pressure has been causing her some painful headaches, so the outcome will be worth it for her to clear her head (literally). There isn't much risk (if that is possible with surgery), but obviously we are hoping everything goes as smoothly as expected and her recovery is quick.  Her doctor who is doing the surgery is actually the same one who removed her thyroid when we found out about her thyroid cancer (which thankfully hasn't reared it's head again).  He did an amazing job with that surgery, and he has an incredibly positive reputation among the staff at Mayo, so we have all the confidence in the world that he will do a great job, which really goes a long way.

We are excited for this warm weather to finally come back this week so we can get outside some more.  Ari has been feeling cooped up with all the rain, and her energy level tends is noticeably rising as a result.  Sunday night I went to Best Buy with her because I had a gift certificate that was about to expire and I know she loves to go there (pretty proud of that).  I got a huge dose of reality though when instead of buying something for myself, I let her pick out any movie she wanted.  In a nutshell, that really explains the priority shift when you become a parent.  Buying stuff for yourself just isn't as fun.  5 years ago, I would have gone and bought some crappy CD or movie just because I could, but letting her pick something out just made me feel a lot better than getting something I probably wouldn't get much joy out of anyways.  It was no surprise to me that she decided to go with Shrek 4 (being that we have Shrek 1-3 on the DVR which get plenty of use).

I'll be sure to hop on here and Facebook after the surgery to let people know how it all went, so stay tuned. In the meantime, hopefully there will be more sun and less Shrek in our life.

P.S. I put some of these on Facebook, but here are some of our favorite pics from Jameson's newborn photo session, as well as some other snapshots.  Enjoy.

One Month Old

As of yesterday, Jameson turned one month old!  Hard to believe that he has been here a month already.

It is also hard to think that neither Teri or I have had a solid night's sleep in over a month.  I can't speak for Teri, but I can say that it hasn't affected me too terribly except for that fact that every day I feel like I am a little more crabby about having to perform everyday tasks (doing the dishes, laundry, making meals,... walking up stairs).

Jameson continues to be a pretty easy baby though. He hardly ever fusses, goes right back to sleep after night feedings, and will usually sleep for about 3 hours at a time.  Teri and I are switching off for the night feedings, which granting each of us the opportunity to get at least a 4-5 hour block of sleep per night.  With what we expected after Ari, I can definitely live with that.

Teri probably gets less than that though, since she still battles with her cough during the night.  She went down to the Mayo last Friday for a check-up.  He energy is doing pretty well considering her sleep schedule, but her mucus is pretty thick still.  I don't think allergy season helps much either.

Her sinuses are also posing an issue for her and giving her some major, intense headaches.  She has had sinus surgeries in the past to clean them out (which is pretty common in CF patients since they build up and create blockage pretty easily), but hasn't had one for at least a couple years I think, so it is a possibility she is due for another.  During the surgery, they knock you out and use some tools to basically scrape your sinuses clean.  Not pleasant to think about, but it usually provides some relief for awhile. It is more of a "cleanse" than a surgery I'd say.  The only scary part about it is the anesthesia, since they don't often like to put CF patients under for some reason (I imagine it has to do with their ability to still breath well while unconscious).


Ari is still enjoying Jameson's company.  We sometimes feel bad when she wants to play or go outside, and we can't because Jameson needs to be held/fed.  It is hard for her to understand why we can't just put him down and do what she wants, but she is getting more used to it with time.  She loves to interact with him.  She is always trying to hold his hand and get right up in his face and talk baby talk (she copies the things we say to him).  For instance if he starts crying, she holds his hand and says "oh, hi mister! hi. you're okay! You're okay buddy".  It is really cute.  But sometimes it is tough getting her to back up when we are trying to change him or something, because she likes to be inches away from him.  I think that is a good problem to have though.  Hopefully they will continue to get along this well in the future. Jameson will have a great sibling to model himself after though, that is for sure. (Here she is with her bike helmet on that she got for Easter)

Overall, we are doing pretty well and are ready for summer to get here!  Ari is itching to play outside more, and I think Teri would love to get out of the house and go for some walks.  I'm just excited to have a beer on the patio with some meat on the grill.  

I will probably be updating this less often now with the pregnancy being over (as you can tell) but I will do my best to keep those interested up to date on things. Take care.

One Week In

Just thought I would give an update on what has been going on since we got home from the hospital.  On Tuesday, the nurse came out to see if we made it home okay and to check on Jameson and see if we had any questions (a standard thing that the hospital does). We thought he looked a little yellow after we got home, and the nurse confirmed our worries. She took his blood to test his billy ruben, and it was very high, so we had to take him back to the hospital so they could monitor him and treat his jaundice. Teri stayed at the hospital with him for one night while he sat under the special treatment lights, and came home the next day. We then had to put him on the lights at home for another 24 hours or so, and they said his levels were back to a manageable level to where he didn't need treatment anymore. He seemed a little yellow throughout last week, but he looks much better now. Ari was a little jaundice when she came out, but we never had to treat it. It really wasn't a big deal, it was just disappointing to bring him home and have to go back a day later.

He has been an awesome baby so far. He only cries when he is really hungry, and even then it is a pretty weak squel. He probably has yet to find his lungs and really let it out, but we will enjoy this while it lasts. It seems like he is going to be very chill compared to Ari when she was a baby.  He is such a tiny little guy, we only have a few outfits right now that fit him.  Even newborn sizes are kind of big.  I think he will fill out fast though being on formula.  In the end though, he will probably be tall and skinny like the rest of his family :).

We are doing pretty good at home. He eats every 2.5 to 3 hours like clockwork so we just split up the night shift and it hasn't seemed too bad. Definitely different the second time around, in a good way.  I feel like my body has already adjusted to the broken up sleep schedule, and Ari has yet to get up in the middle of the night when we are up feeding him, so we hope that continues as well.

Ari has been pretty good with the transition also. She looks like a giant now compared to Jameson, as you'll be able to see in the pictures below.  From the get go, she has been extremely excited for Jameson to come out, and that attitude hasn't changed. She loves helping by fetching diapers, bringing us his bottle, and putting the pacifier in his mouth. The only time we run into problems is when one of us is holding/feeding him and she wants that person to help her with something. She doesn't like no for an answer and usually throws a fit, but this kind of drama existed well before Jameson showed up.  Below is a video of their introduction at the hospital.  She was speechless really, which is really saying something for her :).  Her new thing now is to randomly act like a baby; she'll lay on the floor, want to be wrapped up in a blanket, and whine and ask for a bottle.  We tell her "you're not a baby, don't be ridiculous", and she'll just laugh and go about her business.

Teri got her PICC line out on Thursday and has been off her antibiotics since then and still seems to be doing great lung-wise. When the guy came out to take her PICC line out, he found a clot in the line that was a couple inches long.  This is really scary because he said if that had came loose and reached her heart, it could have caused a heart attack.  The doctors are aware of this risk when doing PICC lines for as long as Teri had hers in, but thank God it did not come loose.  She is starting to come off her high of Jameson's arrival and is slowing down a bit, but that is to be expected I think. Her body went through a lot and she definitely needs this time to recover. Once she does recover though, we are going to figure out a fitness routine or activity that we can do together to help clear her lungs naturally every day and stay away from antibiotics for as long as possible.

It has been awesome being away from work and spending time with the family. And the weather has been so gorgeous here, I don't think I could have picked a better time to have off.  It still seems a little bizarre when we all get in the car to go somewhere and every seat is filled. We are so lucky to have this family, and it is a wonderful feeling to know it is now complete with Jameson's arrival.  Here are some more pictures of the little guy and his homecoming...

Jameson Has Arrived

We made it.  Teri's pregnancy is officially over, and we have a healthy baby boy; Jameson Eric Starkey.  I cannot even describe our gratitude and relief for how well things went.

Last week after they determined Teri had lost 4 lbs in two weeks, they put her in the hospital, then sent her home on Monday to continue her meds at home.  From that point on, they determined that it was too risky to let Teri go beyond 37 weeks and that she would be induced on Friday 3/9.

She followed the plan and took her meds through the week until her Thursday doctors appointment.  They said she was still only dilated to 1 cm, so they decided to get things started by admitting her on Thursday night to start on Cervidil.  This is a medicine that "ripens" the cervix and softens to make labor easier/quicker once you are actually induced. It takes 12 hours to set in, so that is why they wanted to start it on Thursday night. 

So we got to the hospital around 8pm Thursday, and they started the Cervidil by 11:30pm.  Then we waited for the 12 hours.  We each got some sleep (I got a little more I am sure), and woke up anxious to see the nurse at 11:30 am.  She came in to check her, and she was dilated to... 1 cm.  Not the progress we wanted, but this was to be expected on this medicine.

The Cervidil did soften things up though, so they started another medicine called Cytotec.  This essentially softens things even more, and also makes things "irritable" to get things moving.  This one takes 4 hours before they check on you again, so they gave it to Teri and we waited until 5:00pm.... she is now dilated to 3 cm.  In the right direction!

At this point, they were able to start the Pitocin.  This drug is the last drug given to really get labor started.  Obviously at this point, we have our hopes up for things to move real quickly, saying "oh, we'll have this baby  before dark".  Soon after they started the meds, her contractions increased and got closer together.  Once they got fairly painful, they started the Epidural (an IV catheter in your spine to manage labor pains).  Basically, it numbs the labor pain, but still allows you feeling to know when to push and the ability to push where you want to.  Pretty magical.  

We continued to wait and watch on the screen as the contractions kept coming steadily.  They waited until Teri felt more constant pressure, and then checked to see what she was dilated to.  Hours passed like this, and then by around midnight and she was apparently ready to start pushing.  Again, your hopes rise, and you think "this is it! Its actually happening! Here he comes!"

Teri pushed for about an hour, and the doctor poked his head in and said to the nurse "are you ready for me?"  She said "close...but not quite".  Dammit.  Another 15-20 minutes of good pushing and the doctor pokes in again,... "how about now?".  The nurse calmly says, "yea you could probably come on in".  YES. 

He took a front row seat and waited for the next push for about 30 seconds.  As with the other ones, Teri gives the "ok, feeling pressure..."  and we all say "alright push" and cheer her on.  Before I know it, there is Jameson's fuzzy head poking out.  The doctor looked a little surprised as Jameson just kept barreling through, and he says "wow, this baby is coming now. keep going".  He has Jameson's head in one hand, as we he frantically reach for something on a table behind him (no time to even ask the nurse for it I guess).  Teri takes a deep breath (something she wouldn't have been able to do without all the anti-biotics she has been on the last couple weeks) and pushes with everything she has, which was all she needed.  In just a matter of seconds, he came out from head to toe at 1:32 a.m on March 10, 2012.

He weighed 5 lbs 12 oz. at 20 inches long.  Just a little guy, as we expected, but looks to be very healthy. 

 I can't tell you how grateful we are to have had all our prayers answered.  Teri is in great spirits and is already acting like her old self again.  Even during labor, you could see the tension lifting from her mind that he would be out and she could move on.  But once he was out and in our arms... well I can't describe the feeling of relief after all the worries and stress were gone in almost an instant.

I am sleeping at home tonight with to stay with Ari, and by tomorrow night, Teri and Jameson will be joining us.  All the hard work and stress that we (mainly Teri) went through the past 6 months was for good cause, and we both agree was totally worth it.  We can't wait to bring him home and teach Ari to change his diaper :).

Homeward Bound

The doctors are sending Teri home today as planned.  I took the day off to stay with Ari and so I could pick her up when she is ready to go (which is always unpredictable compared to when they actually say you are leaving). They told her 3:00 today, but it can be earlier or later depending on how fast they discharge her.

They put together a list of IV meds to be on this week, and it was a little overwhelming.  Here is the schedule for when she needs to plug in to her meds for the next few days:

Vancomycin:
5:30 a.m.
1:30 p.m.
9:30 p.m.

Cetataz:
7:00 a.m.
3:00 p.m.
11:00 p.m.

TPN/Lipids:
Anytime she chooses, but the bag lasts for 12 hours, and she does twice a day.  In other words, she will be plugged in to this one non-stop.

Being that there are so many meds, some need to be put in at the same time.  In order to do this, they put in a multi-port PICC line. It is unclear if this schedule will continue after delivery, but this is what they have laid out for now.  We are sort of hoping that they lighten it up a little bit because even though the meds help her lungs and therefore give her more energy, they will interfere with her sleep in addition to the baby getting up and crying.  While I am home for the first two weeks, I plan on doing night feedings to try and help Teri with this, but we will probably have to take turns once I go back to work so I can function.  I will definitely be a tough transition even if we didn't have the IV med schedule, but the meds really adds a whole new element to things.

They have been monitoring the baby once or twice a day while she has been in the hospital, and everything still looks great with him.  Teri said he probably feels like he is on vacation since it is so quiet in the hospital and he doesn't hear Ari and Teri talking to each other all day.

Ari and I had a fun this weekend spending time together, going to the mall and Target, and visiting mommy in the "hos-a-ble" (hospital).  Things are looking up while we are kind of in limbo until the baby comes, but Teri's spirits are much higher and we are getting excited for baby to come.  It's getting close!

At the Hospital (not to have a baby)

Its been a tough couple of days.  On Thursday, Teri had her weekly appointment with her OB doctor.  The baby looked fine as always, but she was down another two pounds from the week prior... down 4 pounds in 2 weeks. Obviously this raised some concern. With her weight being so low, her cough being super mucusy, and her health in just general decline, her doctor set her up to be admitted into the hospital Thursday night.

I rushed home from work, helped Teri get some things packed up, and we were on our way to the hospital.  My mom came over to watch Ari thankfully so we didn't have to entertain/watch her there while she was admitted.

Once there, she was sent to a room on a general floor (this hospital doesn't have a specialty respiratory floor like in other hospitals she has been to).  This makes things a little more difficult because you have to explain to pretty much every nurse what is going on because they are used to taking care of people that are just generally sick for some reason as opposed to a specific disease or part of the body.

Maybe our expectations are too high of what the nurses will know when we enter, but it didn't get off to a great start.  The nurse came in as Teri was coughing (which I wish I could let you hear what it sounds like.  It is like a 70 yr-old smoker's cough at this point), and she says "oh sweetie, you have a nasty cold"?  Teri just sighs since she doesn't even have the energy to begin explaining to this lady whats going on.  I just stopped and looked at her and said "she has CF...and is 9 months pregnant.  We aren't having a good day".  She kind of sighed and said "Aww sorry to hear that", not exactly grasping the gravity of the situation.  She then said "so, you aren't eating, is that right?"  Teri said "no I eat all the time, but I keep losing weight because I throw up and have CF".  It still didn't click, as the night continued I must have heard that same statement 3 or 4 more times "so what's going on, why aren't you eating?".  I could tell by looking at Teri's face just what she wanted to say to the nurse, but she bit her tongue.

Later on she plugged in two IV's that were not supposed to run at the same time, which caused a giant air bubble in the line (which can kill you if it gets into your body) and the machine luckily shut off and sounded an alarm.  She took the bag off acting confused, when we kept telling her they had to be run seperate.  She finally actually READ the order from whoever prescribed it, and realized "OH!, we need to do these seperately!".  I was getting pretty worked up at this point and honestly didn't even feel comfortable leaving to go home, thinking my wife and son would be dead by morning at the hands of some dumbshit nurse.

Today she had one that she was really getting angry at, because she had to literally tell her when to bring in her meds because she wasn't coming in to plug the IVs in that Teri knew were due.  She asked for her Thyroid pill -Synthroid- at 8 am (which is seriously one of the most common meds on the fucking planet), and she said "sorry, we don't give out Synthroid until 10 a.m.", and refused to give it to her until then. Seriously, that is like saying they don't give Tylenol until 10a.m. Ridiculous.

For every nurse like this though, there is great nurse who is helpful, informed, and just generally caring and normal.  I can't tell you the difference it makes in Teri's mood when there is a nurse like this on the clock.  Good nurses truly are saints in not only caring for patients, but also keeping their mind at ease in a time of stress and many unknowns.  They actually LISTEN to her since they know she does treatments everyday for her CF and has been in the hospital multiple times.  They bring her meds on time. They respect what she is saying because they take their pride out of the way and realize that Teri knows more about CF and her meds than they probably do, even though they are very intelligent.  But honestly, there are just some nurses who have been doing it for too long, have lost the desire to even care about the patient or their background, and just want their shift to be over.  I hate these nurses.

The general takeaway from any of our hospital visits is that processes take way too long, nursing staff competency is insanely inconsistent, and there are communication gaps at every turn.  This is really hard for me personally since part of my role in my own job to efficiently communicate cross-functionally in order to get things done on time.  The whole system just seems flawed.  Even though some of the nurses seem a little spacey, I think the breakdown occurs in the actual process, not the staff.  I don't know where things go wrong or what they need to do to fix it, but it makes situations like ours that much more difficult to deal with.

I was able to go to work today as Teri's mom came to watch Ari during the day.  All three of us went up to the hospital tonight, and Ari was happy to see her mom.  She was really good and sat on the bed with her a lot of the time.

A lot of times when Teri is coughing, Ari will kind of give her a funny look, and Teri will tell her "mommy is sick" or "mommy doesn't feel good".  Tonight Teri was coughing while Ari was on the bed with her and Ari put her hand gently on her knee and said "you don't feel good mommy?", and then snuggled up to her chest.  It is going to be tough for Ari, but I feel like she is already learning about what it is to be sympathetic. She isn't just repeating something Teri had told her, you can tell in the way she looks at her mom she is genuinely concerned at times when Teri is throwing up or coughing hard.  Maybe she picks it up from me too, even though I try to hide my concerned reactions from her.

This post is getting long (and you can maybe tell by my language it is late and I'm pretty tired), so I will try to wrap it up. Here is what is going to happen moving forward...

They currently have her on the following meds:

• 2 different IV's for just keeping her hydrated (sodium, and potassium?  I don't remember)
• IV Vancomycin (again)
• IV Foraz- another anti-biotic, safe for the baby
• IV TPN- which is another version of lipids, just in a stronger, more dense form to gain weight quicker
• Prednisone - this is essentially a steroid that helps open up the airways in her lungs.  She may continue to cough, but this ensures that her lungs aren't as tight, so more mucus is allowed to exit when she coughs.  An added benefit to this is that it is safe for the baby and it helps the baby's lungs develop a little quicker, which is why they couldn't give her this drug up until this point in the game.  This will ensure that if the baby is born in the next couple days or more, his lungs will more likely be developed enough to be okay without treatment.  

That is quite a list.  What is more overwhelming is that they are keeping her until Monday, and are then going to send her home on most of these meds.  So she will again have to wake up in the middle of the night, unplug, plug in, set alarms, etc.  A large part of me wants her to just go into labor this weekend and get him out just to save her sanity.  I know another week in the oven is good for him, but she needs relief.  

If you've made it this far, thanks for reading my short novel.  I will do my best to keep everyone informed on here, and when there is not enough time to write a post, I will probably just update through a Facebook status.  Thanks again for all the support we have received through messages, wall posts, texts, etc.  It means a lot to both of us to know we have a lot of people who care for us and are sending good thoughts. 

Here is a pic of Teri (and her belly) from last week, and helping Ari with some legos last weekend.  

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...