Thursday, May 31, 2012

Happy Due Date!

I made it!  This is the first time I have made it to my due date.  Not everyone is excited about it, and I am getting lots of calls wondering if I have forgotten to share any news.  I think she is waiting until June so she can have a single digit birthday like the boys.  Who knows?  The midwife says she is doing fine and we can just wait until she’s ready.  I am glad we got to see MIB 3 on opening night last Friday, even if it prompted another call from my neighbor wondering if we were out late because we had a baby!



My friend said the other day that if something is going to happen, it will happen to us.   Well, it happened again.  The air conditioning broke yesterday.  So we packed up and headed over to my in-laws for the night.  Every day this week there has been something that has put baby on the back burner, for as much as we have control over her arrival: appointments, meetings, and now the air conditioner.  They are supposed to come today and work on it, so I hope they have the parts they need to fix it right away.  Randy has requested this weekend sometime.  We’ll see what we can do!

Wednesday, May 30, 2012

Taking the Chute

We went to the sleep doctor yesterday for the results of Justin’s sleep study.  It was another afternoon appointment which required nap adjustment.  That always makes for a tougher day no matter how hard we try to make it better.
The appointment was for 3 pm and we didn’t see the doctor until 4:15.  That just makes me mad right at the beginning.  I had to take Travis with me so both boys had been waiting for over an hour and they were getting antsy.  They start to pick at each other and that makes it hard to listen to the doctor.  He started off by asking how the study went and I still feel like the execution was very good, but I had no idea how the results would read.  He jumped right in with the discouraging news:  Justin had no respiratory events the entire night, no matter what the CPAP setting.  No central apneas, no obstructive apneas, no RERAS, no snoring, nothing.  But given the results of the March study he still will call his diagnosis mild sleep apnea, and continue to treat with a low CPAP setting.

That being said, the big issue that the study revealed was the huge number of arousals Justin experienced per hour of sleep.  They say any more than 5 per hour is noteworthy and Justin averaged more than 20.  ( Remember, arousals are not wakings, but shifting in levels of sleep, either deeper or lighter.)  And then tracking his REM sleep (dream sleep) he only gets about 12% of his night’s sleep at that level.  That’s not enough, but I am not sure what a good percentage is.  I just know that he needs more.  The doctor said that some sleep issues can be treated with medicine, but medicine is more effective in issues falling asleep or staying asleep.  Justin’s issue does not respond to medicine, and it causes other problems making the trade off undesirable.

His solution?
Give him more sleep. 

Put him to bed earlier and let him sleep later.  If he sleeps longer he will have more opportunity to get more REM sleep.  That should decrease the sleepiness.  It has been my goal since they were born to get the boys to sleep more and so far I have been a failure.  Justin already goes to bed at 7:30 and I have yet to figure out how to make my children sleep longer in the morning.  He told me not to wake him up.  I have never woken my kids up!  Ever!  That’s almost humorous.  You can lead a horse to water but you cannot make him drink.  That is both my children and sleep.  He wants me to offer incentives to make Justin sleep later.  Incentives don’t even work for potty training when I am right there to remind him and it is daytime.  Somehow during the night when he wakes early he is supposed to know that he needs to go back to sleep to get some reward.  I am okay with putting Justin to bed earlier, but the doctor doesn’t want his night pattern varied more than once a week.  That kind of messes with our limited social life, especially since we don't have a lot of time together anyway. 

So down we go.  Back to the beginning to start over and try to figure out where to go this time.  How do we try to implement the doctor's suggestions?  I really want to be open to his suggestions without being antagonizing or ignoring them without true effort.  We are making headway in the constipation area, and now tackling this feels daunting.  We have three months until we go back to report the results of our efforts so we need a strategy and hopefully we can make some progress.  I am trying to be optimistic, but I feel discouraged.  I suppose that's how it feels to be back at the beginning.

Monday, May 28, 2012

I Lost

Travis and I made a bet about which would come out first, Travis' tooth or the baby.


 



This morning, I lost.

Friday, May 25, 2012

This Week's Happenings

Things just seem to come in waves around here.  I was feeling pretty good since we had made it through all of Justin's appointments and most of the other things we we hoping to make it through before baby comes.  Then it was 10 pm Tuesday and my mom had made her flights and was well on her way here when Justin woke up screaming and when we ran to his room we found that he had thrown up the brightly-colored blueberries he ate for dinner.  After a group effort to get him cleaned up and his sheets changed he was put back to sleep.  My mom drove in from the airport and said that her back and arm had started hurting on the second flight and now she was at a nine on a scale of ten for pain.  So she took some medicine and went to bed and then Justin woke up throwing up again.  We cleaned him up and brought him and the bucket to bed with us.  We slept for a few hours before he threw up again.  And again.  And well, again.

By morning we had barely slept and Justin had no more blueberries in him.  While I was bathing him Travis came in and showed Randy his swollen, puffy eye.  So Justin was vomiting, which meant no therapy, but he wasn't quite to doctor-appointment serious sick.  My mom could barely move and needed to go to the chiropractor.  Travis had to the beginnings of another contagious eye disease and it was my day to go to the doctor for baby.  Oh, and Randy had important meetings at work that he really couldn't miss.  (He had already told me that I needed to wait until after Wednesday to have the baby.)

I got appointments for everyone and then I had to find drivers to take people to appointments since I have found it's difficult to be in 2 places at once.  I sometimes feel like a beggar calling my friends and asking for help.  This was a particularly tough day.  I had to go deep down my list asking for help but everyone made it to their appointments and got whatever relief they could.  Justin stopped throwing up and even began eating small amounts of food around lunch (he really wanted "ships" (chips) but I was able to redirect him for a short time).  Travis ended up having a stye in his eye.  My mom was still suffering pretty intensely but she was able to take some of the edge off the pain.  And baby is happy where she is and shows no signs of being ready to come out.

That night we hoped for better sleep, but Justin developed one of his classic croupy coughs and he only settled down while sleeping with me sitting up in the recliner.  By morning he seemed fine and he did great the rest of the day.  I, on the other hand, was struggling with back pain and being completely exhausted!

My mom really felt like she needed some pain meds and being out of town she has no doctor to prescribe anything so her doctor told her to go to the ER.  Randy came home early to take Travis to his last soccer game and I went to the ER with my mom.  We got there at 5 pm, armed with food and entertainment and ready for the wait.  We began hearing people murmuring about how long they had been waiting and wondered how long the current waiting time would be.  The longest we heard was six hours.  That was not at all encouraging!

One hour into our wait I got a text from Randy that Travis had scored his first goal in his soccer game!  So proud!  Two hours into our wait they called her for an ultrasound to ensure she didn't have a blood clot in her arm since she had been flying.  That was accomplished fairly quickly and we were back in the waiting room again.  While we were gone, the room had exploded with activity and we could not even find two seats together. People were even sitting on tables.  Four hours into our wait I decided I needed more food than what we had brought and I hit a fast food restaurant next to the hospital.  By this time every drop of pain medicine that my mom had taken was out of her system and she was in tears from the pain.  She could not get anything for the pain, but we did manage to get some ice packs and we alternated between ice packs and my rubbing her arm and back.  Five hours into our wait I began inquiring how many people were on the list before my mom.  Seven hours into our wait she was called for an EKG and we were told they were cleaning a room for us and she would be back in a room soon.

Another hour later (that makes eight hours waiting) we were finally in a room and the nurse began her triage questions.  Another hour later, and two failed attempts at starting an IV, she got anti-nausea medicine and a pain shot.  She finally felt some relief about 20 minutes later and we settled in to try to get a little sleep.  She roused me a bit later saying she was going to throw up.  I found an acceptable receptacle and moved out of the line of fire.  I somehow end up being the one who cleans up the vomit at work, but I am not in the strongest of positions these days and I did not want to get too close to the action.  She continued to feel sick for another hour and her arm and back started hurting again.

The doctor diagnosed a pinched nerve in her neck and gave her orders for an MRI and prescriptions for pain meds and anti nausea medicine.  She was still feeling sick so she had to get a shot to stop vomiting.  We were finally discharged from the ER at 4 am and she still got sick in the car on the way home (fortunately we had a bag to contain it).  We were finally tucked into bed close to 4:30 am.

Somehow it was still a success because she got pain medicine.  Eleven hours total for a little piece of paper that will give her relief for three days.  Who knows what we'll do after that.  Maybe back for another round?  Anyone up for accompanying her??

My back had been hurting a lot since the sleep study but when my mom asked how I was doing during our ordeal I realized that I felt really good!  I didn't have any pain at all.  Baby must have moved into a different position.  God really took care of me during that whole time so I could focus on my mom.  My mom called the night pay back for the 17 hours of labor I put her through when I was born because yesterday also happened to be my birthday!

Monday, May 21, 2012

I Love My Daddy So Much...



I think I'll stick my toe in his ear!


Friday, May 18, 2012

Sleep Study #5: We Made It!

After we went to the new sleep doctor, we waited to hear from scheduling about an appointment for another sleep study.  The doctor indicated that it would not be long before they called and it would not be difficult to get in another study before the baby is born.  I admit I let it go a little long without hearing anything because that was in the midst of Justin's vomiting.  So I did not call until after we returned from Savannah.  By that time their May schedule was filled and they offered to call back when they began scheduling for June.  I had to say very politely that while normally that would be just fine, I had a deadline and if it didn't get done before then, I wouldn't be able to come in with Justin until next year probably.  (Knowing how long it takes my kids to sleep through the night...)  I got offered the cancellation list, which I agreed would be fine and set this weekend as the last days I could probably safely schedule a study.  They were very helpful and we got a call last week that an appointment last night had opened up.  So last night we headed down and spent the night at the sleep clinic for hopefully a very informational and helpful sleep study.  And no labor pains so we made it!

I have to say to begin that it was a much better experience all around than we had at the other clinic.  We were told to arrive at 8 pm, which concerned me because by the time everything was connected I knew it would be way past Justin's bedtime and he would be more cranky while everything was being done to him, but we got there early and the tech (Jody) took us right back and we got started.  She explained everything to us and said that she would listen to whatever I said that Justin needed and she would stop if necessary and walk away and take time for him to relax, and if we couldn't finish the study we could leave in the middle of the night if we needed.  That was very comforting and reassuring.  You can see how much happier he is and we had already attached a few wires.  And because it was a titration study and not baseline, we did not need the nasal cannula and temperature sensor which are always the hardest to tolerate so that helped immensely!


He still cried some and did his super cute "oush" (ouch), but I could very confidently assure him that I would not let Jody hurt him, and she was very gentle and patient.  He watched his Veggie Tales and did not cry to the point of needing to blow him nose but once at the very end and he did not get the red dots around his eyes from straining and screaming so insistently.


Everything is all attached and look at how calm he is compared with times past.


And rather than the ski mask he just had a stocking cap, which was so much more comfortable.  I was worried that all his flopping would pull off some of the sensors on his chin, but instead his scrunching up cemented then on and it was difficult to detach in the morning.  The only things that we had to reattach during the night was one of the leg sensors and move the pulse ox from his finger to his toe (which is where I really wanted to put it in the first place so his sock would hold it on).


We were able to bring our own tubing and mask so all I needed to do was loosen the straps to accommodate the excess padding on his head!


This was Justin's bed for the night.  I didn't have to sleep with Justin this time.  I got a fold out chair.  Justin got a better deal.  Mine was hard as a rock and I tossed so much I was glad I didn't bother Justin but I could have used a lot more padding!


When we went to sleep I asked what time we would be getting awoken, since the information we received prior to the study was a bit sketchy on that.  Jody told us 5 am.  Yikes!  While that's fine for me I was thinking about how our day would go with Justin on that little sleep.  She said she could wait a little and I asked if 5:45 would be okay since that usually ends up being the time Justin wakes up anyway.  She said that would be fine and we settled down for the night.

I really have no idea how the night went.  Since the bathrooms were outside the room and I cannot make it through the night without at least one potty break, I had to leave the room and the monitoring computers are right there I was able to talk with Jody during the night.  I tried to see if I could get anything off the computer monitors when I was talking with her, but she wasn't giving me anything.  Bummer!  And I couldn't tell at what pressure she had the CPAP set.  I don't even know if she turned it off because she seemed to indicate that maybe it wasn't the pressure that was the problem.  It was all very cryptic.  We'll find out more when we get the results.

The first picture of the morning.  Justin was ready to pull it all off and be done!  The disconnection process was a little harder than the attachment because he was still tired and pulling tape off is harder than sticking it on.  I just left on the leg and chest stickers (the round ones you can see on his legs) to come off when I gave him a bath at home.


There were no showers at this facility so I did the best I could getting the goo out of his hair with a warm washcloth and then we headed to meet Randy and collect Travis.  The one good thing about the late arrival and early leaving times is that Randy was able to be home before we left and we could meet him before work without him having to be too late.  Then I wanted a treat of some coffee (which I haven't been drinking) to wake up for the day.  So we went to Panera, with Justin with his goopy hair and still in PJs.  Apparently Travis was still tired too!



A few brother reunion pictures!



Plus an affectionate noogie!





After I talked with Jody during the night I couldn't go to sleep for a while so I thought some about what she said.  I got a bit discouraged because if CPAP isn't really helping, that means we have to start over.  From the beginning, Randy and I didn't really think Justin had apnea, but the first study came back with that diagnosis so we began focusing on that.  It's been almost 2 years since that first study and we just want some relief for Justin.  I decided that it's like every sickness begin a journey from diagnosis to resolution.  Some journeys are short, like from discovery of an ear infection to medicine to cure.  This is one of the longer journeys.  And it's not a straight road, it's more like a game of Chutes and Ladders with more chutes than ladders.  I am discouraged because I feel like I can see the end of the "game" but we might be preparing to take another chute further back down the game path.  It's not that I want CPAP to be the answer, but I just want some answer.   I want to be able to reach the resolution of this issue.  If this isn't the answer, we are preparing to take another chute which means we need to start over in some sense and begin exploring another path.  This one has been two years long, how much time will another one take?  I just don't know what to think.  We are so grateful for all your encouragement and of course we will share the results of this study as soon as we know!

Saturday, May 12, 2012

CPAP Update

Justin has been back on the CPAP machine for about a week now and I still don't think the setting is correct.  Fortunately we have not had any of the readjustment issues with lots of night wakings.  That has been helpful since I am definitely in the not-sleeping-well phase.  Justin wears the mask fine, but he is still very tired and lethargic throughout the day.

We got a call about a cancellation appointment for a sleep study coming up this week so we are going to try to get in and get that done if no baby comes.  That should allow us to get a better setting quicker without as much trial and error.  We still may have some adjustments, but I think we can get closer quicker.  We got a new mask from the DME this week so that should help with the study too.

Please pray that the study is effective at helping solve our sleep problems, baby girl holds off until next weekend (at least), and for better sleep for everyone!  Thank you, thank you!

Thursday, May 10, 2012

Annual Cardiology Visit

Justin had his yearly trip to the cardiologist this week.  It was also his first echo in two years.  They were hoping he would be old enough that he wouldn't need to be sedated so that's why they skipped last year.  It worked!  After the initial placement of the monitor stickers and leads, Justin made it through with just the occasional "ouch" whenever she moved the wand.  He was watching TV and when she moved the wand he remembered she was there and he didn't like it.  He did great; I was seriously impressed.  You see, he's been "helping" at the doctor listen to the baby's heartbeat and at the end he always lifts his shirt for us to listen to his baby.  But whenever we try to touch his tummy with the doppler, he freaks out.  So I was not at all sure how this appointment would go.  But it turned out really well.

And then we had a long wait for the doctor (because that's what you do a doctor's appointment...)  It was nap time so Justin fell asleep on me and did some more work on flattening baby sister.  I might have taken a short catnap myself.  After over an hour waiting, our doctor came in with good news.  Justin's echo is relatively unchanged from two years ago.  There is mitral valve leaking because of the one muscle doing all the work of sealing the valve, but it's working well enough not to cause severe leaking or stenosis.   She was very encouraging about this continuing and not worsening (which would cause valve replacement) because it hasn't changed much since surgery.  There is no way to be completely certain that it won't get worse, but for now, we are going to be thankful.  She gave us clearance for another year.  She is hesitant to say two years because the leaking is on the border of mild to moderate.  We'll do another echo next year, along with the other usual suspects, an EKG and x-ray.

Justin was a hit in the cardiology department.  He told everyone we passed in the halls that they had put stickers on his back and he did not like it.  And apparently I am somehow not as big as I feel.  One of the nurses was hesitant to ask if I was pregnant!  How funny when I told her I am less than a month from my due date!

Wednesday, May 9, 2012

Pre-baby Vacation

Randy and I took a trip to Savannah a couple of weeks ago to get in a little relaxation (read: sleep!) before baby arrives.  It was right at the cusp of my travel limitations, but we made it back without having a Georgia peach so I say it was a good trip!  And we slept in every morning.  (Yeah!)  And our hotel was right across the street from a Krispie Kreme Doughnut shop (my favorite!) so we had doughnuts every morning for breakfast.   Yum!

We did lots of the things we like best: seeing the sights, taking tours, checking out the history of the city.  And Savannah has tons of it all.  We started with a river boat tour, which was really interesting and a good way to get the lay of the land.  The river is not very wide and apparently there is a huge container shipping port in Savannah. That's a container ship in the distance.



Before we left it was really hot on deck.  There wasn't much breeze so I was ready for us to go!


Afterwards we walked around and came across Paula Dean's restaurant and store.  I am in front of her store and the red striped awning is the restaurant.


The city was designed around little squares, kind of like little parks.  They are really fun, with statues and trees and benches.  We saw lots of set ups for parties and weddings in the different parks.  Here's Randy with John Wesley.  I didn't know he was ever in Savannah, but it turns out he was.  Who knew?



We visited Forsythe Park and there was a sidewalk art festival put on by the local art school.  It was really interesting and fun to see.


You should have seen the people working on their projects!


This guy was one of our favorite characters.


The fountain in the middle of the park.


The next two are some of the old homes we toured, built in the late 1700, early 1800s.  Amazing architecture and cool designs.  The second one was the first home with indoor plumbing.  It was supplied with a series of cisterns.  And it had a little catwalk/bridge thing on the upper floors.  The kids would have a blast!



We went to an old cemetery that was where General Sherman made his camp when he invaded Savannah.  There are some old tombs in there!




When the army left, some of the stone markers were knocked down and in the clean up effort, they didn't know where they all went so they just lined them up along the wall rather than put them at the wrong graves.



This is one old tree!  Look at its long gray beard!  No really, the trees were very pretty!


We visited Fort Jackson, which was interesting, but not very significant because it didn't see much action in battle.  But it had some big cannons!


And some little cannons...


Okay, so this is how big the container ships are that come up the river.  You can see the people standing on the top of the fort and the container ship towering above them.  The ships looked like lego towers with their various colored "blocks". 



We also hit the Railroad Museum.  It's a round house (with half of the circle removed) with some old rail cars.  They have some really amazing old cars that were used for the president of the railroad and for the line inspector.  They traveled in style!  The kitchen and dining area reminded me of an airplane galley with all their latched doors and cabinets.



There was a huge battle during the Revolutionary War in Savannah, one of the bloodiest.  This is the Memorial for the battle.  There's a square for every non-British life that was lost during the battle.  (There were actually several other countries that fought on our side during the War.  Again, no idea!)


We also checked out a botanical garden.  This was very relaxing and peaceful.  And not many bugs either!  There were lots of award-winning roses too.  They were a little past peak, but still very bright and colorful.




We went to the Savannah History Museum and saw (one of ) the benches from Forest Gump!  One of the squares in Savannah was transformed into the bus stop where Forest sat to tell his story.  Aren't you impressed? :)


There was a special exhibit quilt show at the museum.  So I took this picture for my friend, Sherry, who loves all things quilted.  Randy was so good to indulge me!



Then we took a little train ride back at the train museum.  This is the lone picture of the two of us from our trip.  Not very impressive, especially since we had to take it ourselves!


Okay, so those of you who know our friend, Mr. TD, this was our tour guide/conductor for our train ride.  It was totally him!  He reminded us so much of Mr. TD that we had to take a picture of him to prove it!  The only difference was Mr. TD has more hair.  And this guy was an "engineer" too!

We ate some amazing food while we were in Savannah (besides the Krispie Kremes).  We found a restaurant that cooks real comfort food.  They serve cafeteria-style and you pick a meat and three sides and we had more food on one plate than the two of use should have eaten.  (Randy got two huge pork chops!)  We had some amazing sweet potatoes and macaroni and cheese, and of course okra.  That plus some sweet tea to wash it down was enough to send us into sugar shock!  Plus we visited a couple of candy shops (serving homemade pralines!) and a yummy ice cream parlor.  I gained enough weight for the entire rest of my pregnancy!  (And Randy too!)  Such a good time!  I highly recommend such a trip at least once a year for everyone, with or without a baby on the way.

Tuesday, May 1, 2012

Justin's Mystery Sickness

It started off with constipation, which is not unusual for Justin.  We are usually able to clear it, but this one was a toughie.  Literally.  We could feel it in his abdomen.  Then one day he started throwing up everything he drank or ate, even water.  And of course it was Saturday.  It's always Saturday, unless it's Sunday.  After some calls to doctor and nurse friends, we headed to the ER.  It doesn't take much for Justin to lose weight so we know he can't go very long without eating or drinking.

We are getting good at going to the ER.  We know what supplies to bring to make the trip a little better for us all.  It took about 4 hours from arrival to discharge, but Justin was much better by the time we left.  The doctors and nurses are all so nice to us and we always try to ask a bunch of questions so that we can avoid a repeat trip for the same problem.  It doesn't always work, but we can try!

Here we are waiting for the doctor.  Justin got an x-ray right away to make sure that our diagnosis was correct.  (It was.)


We brought the DVD player and the boys loaded up on Veggie Tales movies.  I read my book club book.


Justin did not enjoy getting it all out, but three large diapers later he was much better.


And then it was sleep time.  He was so exhausted from all that effort that he fell asleep within about 2 minutes.  Poor guy!  The doctor said he could try to drink some water and he threw it up on me so we had to give him some anti-nausea medicine.  Twice.  He spit out the first attempt.



So that's how it began.  The doctor told us to give him miralax every day for at least the next month since he was very susceptible to a repeat because his colon was all stretched out.  So we started the regiment the next day with beautiful results.  Unfortunately, that was the day Travis decided to get sick and throw up a couple of times in the middle of the day.  By the next day Travis was fine and we thought Justin was fine too.  But then Justin threw up again.  So we thought Justin got Travis' bug.  Justin would do fine with some things but he threw up at least every other day for the next week.  I did laundry all the time and our new van had towels laid all over the floor, plus an extra stack just in case.  Justin and I both went through two to three outfits a day and by Friday something had to be done.  Justin had lost more than a pound in the past week and he doesn't have that much to lose!  By that time my thought was not stomach bug because he was acting fine the rest of the time, and then he would just start acting clingy and that was my cue something was coming.  And within a little while he was ready to eat again.  Weird.  I think it was because of the miralax.  It takes a few days to work, and Justin's system runs a little slower than most.  We had begun miralax before our ER trip so he already had some in him and I think it was just not the right fix for him.  The doctor has been pushing miralax on him every time I mention constipation and so when we went back she agreed that maybe it wasn't right for him.  "And you didn't even want to give it to him," she even said.  I felt slightly vindicated.  She agreed we should stop the miralax and see if that solved the problem.  Then we had to wait for the miralax to get out of his system.  That took another 10 days.  Ten days of Justin throwing up every other day and not wanting to eat much of anything.  His diapers were falling off because he lost so much weight.  His legs and arms just looked so thin.  He was pitiful, and he needed to be carried everywhere.  It was sad.  Then he started getting slowly better.  He would eat a little more every day.  He played more.  We loaded him up on pedialyte and prune juice and that has been great.  So I think Justin is going to start a prune juice regiment.  And the doctor agreed to a GI consult so we can solve our problems once and for all. 

Hopefully.