Saturday, April 30, 2011

2:00 p.m. - 10 Days Old - First Feeding Via Tube

     We just started Garrett's first feedings.  He will be tube fed at 1ml of milk every hour.  We will see how he handles food in his stomach for the first time. 

     Garrett has had a rough day up to this point.  I guess the sedation medicine weaning down finally caught up with him.  After a second dose of a sedative he has been calm the last hour or so.  So they decided to go ahead with the feedings.  When he has a bad day so do I. 

11:30 a.m.- 10 Days Old

When I arrived this morning Garrett had lost a tube and gained a tube – this is a good thing though.  He lost 1 of 2 tubes that were down his throat.  His ventilator tube remains down, but the tube that was draining from his stomach was removed.  The tube he gained was a feeding tube.  It actually goes down through his nose though.  So NOW he has 1 tube down the throat (ventilator) and 1 tube down his nose (feeding tube, which is new).  They are going to probably try a little milk down the feeding tube later today.  We will see how that goes since he has not had food in his stomach yet.
                According to x-rays his left lung really looks about the same.  It hasn’t expanded as much as I would have liked.  But beggars can’t be choosers on what you want your baby’s organs to look like I guess.  I am just glad Garrett is still here with me. 
He was pretty upset this morning when I arrived, so his nurse ordered a dose of a sedative to help relax him.  This was probably the most upset I have seen him, so he really needed it.  It is one thing to let a normal baby cry, but Garrett is hooked up to so much it is scary.  When he gets upset and flails around he grabs at his tubes and wires – we DO NOT need him pulling any of those out!  Though I absolutely hate to see him with his silent cry, I try to keep in mind that all babies cry.  It is a normal baby thing to do.  That helps me handle it a LITTLE better………but just a little.

Friday, April 29, 2011

Life in the NICU with a CDH Baby

Here are some things I have had a difficult time with on this journey since becoming a NICU parent.  I also feel that future CDH parents should be forewarned about some of these things:
1.       No Wedding Ring.  This bothers me because I rarely left the house without it before now.   No rings, watches, or bracelets are allowed.
2.       Easily Stimulated.  CDH babies are easily stimulated.  VERY EASILY.  Which can throw the vitals off.  When this happens all the machines in the room start alarming (I call it chirping).  This happens frequently it our room.  And each time it does my heart skips a couple beats until the machines regulate themselves or Garrett regulates himself.  This means I RARELY touch my baby.  I want him home where I can hold him all the time.  Therefore I resist the urges to touch him when I am here each day.  I just sit close by.  The quicker he gets better; the quicker he gets home.
3.       VERY Sick Babies.  I now spend my days in the land of sick babies.  There are a lot of babies here that do not make it home.  This morning when I arrived a baby down the hall was no longer in the room.  I know this baby did not go home; so I know where the baby is:  Heaven.  I LIVE by the saying, “No parent should have to bury a child.”  Life it not supposed to work that way.  My heart hurts so much for the family down the hall.
4.       The Silent Cry.  Since Garrett is intubated he makes no noise.  You can see him wrinkle his face some of the time.  But where there should be a baby cry there is silence.  Interesting to be a mom that would welcome a crying infant.   Hopefully the day will come sooner rather than later.
5.       Missing Grant.  I know that my oldest son Grant is being WELL TAKEN CARE OF and SPOILED when I am at the NICU.  But this doesn’t make the reality of not seeing him any easier.  I do feel he is getting the short end of the stick.  I think most parents would feel this way in my situation.  When I am not in the NICU, I try to give him as much attention as possible.  I still feel a little guilty, can’t help it, as I am tired and stressed when I do get home.
6.       Our New Normal.  As life changes you have to adjust.  What other option is there?  We are slowly getting settled into our new life style of daily trips to the NICU.  HOPEFULLY once we bring little Garrett home we will yet again adjust to a new normal.  He will require more things than your typical new born.  However Paul and I will not know any different I am sure.  It will just become our ‘new normal’. 

11:00 a.m.

Garrett is doing well this morning.  He is more and more alert as they take down his sedatives/pain meds.  Realistically he did just have major surgery, so he is sore and uncomfortable.  Yet he seems to be tolerating it fairly well.  His vital signs are where they should be, which is always a good thing.  They are weaning more on his blood pressure meds and that seems to be the major plan for today. 
I have learned it looks like they will soon put in a feeding tube to start some feedings, which is a HUGE step in the right direction.  This could happen in the next few days.  Up to this point Garrett has been fed Lipids directly into his blood stream for nutrition.  So he does not feel hungry nor has he had anything in his stomach yet food wise.  So it will be a slow process, as is everything in our situation.
            A special thanks to my cousin Michelle Denny and family for dropping off dinner last night.  It was marvelous! 
And this little giraffe was dropped off this morning for Garrett from Tyler, Helen, Lucy, & Will Moore, thank you very much!  So, so thoughtful.

Thursday, April 28, 2011

10:00 a.m.

As of 10:00 a.m. here is the latest update:
They have weaned Garrett's Dopamine (blood pressure med) from a level 7 to a 5.  Moving on the right track there.  They have also taken his Fentanyl (pain med) down to a level 1.  The biggest shocker of the day is that they moved the Nitric Oxide tanks COMPLETELY out of his room!  YEA to that!  That says to me that they do not think he will be needing them, which would have been a step backwards obviously.  Anytime a tank, tube, or wire is removed I do a little dance on the inside. :)

Garrett with his shades on.

1 Week Old

I did not get the chance to post these yesterday.  Here is Garrett at 1 week old.


Back to being snug as a bug................well, as snug as you can be with lots of tubes and wires.


This is Garrett's nurse Anne.  She had him the past few days and right after his sugery.  She was leaving for Florida today.  I think after a few days of ups and downs with Garrett she NEEDED A VACATION!

Wednesday, April 27, 2011

Life After Repair Surgery

Now we begin the OTHER end of our CDH journey.  Now that the repair surgery is done, the next weaning process begins.  First we wean on the drugs AGAIN and then we, eventually, wean the ventilator.  This process will take weeks most likely.   We will have to go up and down and repeat.  It is a tedious process with CDH babies.  Seeing how much they can handle and if they cannot handle it well, giving them something to help.  It is almost like a juggling act.
Once he is weaned off enough stuff, we begin to work on feedings.  Which is much more difficult than it sounds in theory with these babies.  But first we just FOCUS FOCUS FOCUS on weaning meds and remaining nice and stable. 
Paul and I are very thankful for our families.  They have been a tremendous help the past week of Garrett’s life.  Yes, Garrett is one week old today.  Hard to believe.  He has had more done to him than some people have in a lifetime. 
            Garrett will NOT be home anytime soon.  His lungs are too small and his pulmonary hypertension is always a problem, as it is with ALL CDH babies.  Slowly and surely we hope he gets better and can move towards the ultimate goal of going home.

Garrett's Little Lungs

Here is what we are dealing with lung wise.  The picture on the right is directly following Garrett's repair surgery.  The big black area is where all the extra organs were removed from.  This big black area should normally be completely filled with lung tissue.  The small lobe at the top is what little left lung tissue was there.  

The picture on the left is several hours out from sugery.  The dark area has now been filled with fluid and air.  The left lung expanded slightly following surgery as well.  Hopefully it will continue to expand in the days to come.  It is very small, so it has a LOT of growing to do to make my baby better!


Here I 'tried' to outline his lung tissue.  Once again, the picture on the right is directly following surgery.  The picture on the left is several hours after surgery.

(you can click on images to make them larger)

Tuesday, April 26, 2011

Post Op Pics

I took the chance to snap some pics after surgery while all the lights were on in the room and Garrett was sedated.  Here he is right after surgery.  From this side you cannot even tell her had his repair surgery.


Here is a shot of his dark hair.


Little baby.


This shows 2 of his small incisions from surgery -- 1 is in the middle of the picture, the other is kind of under his arm.  The 'thing' on his shoulder is a Central Line.  It is kind of like a large IV.  They had to put it in for surgery.

Garrett is Out of Surgery

Garrett's repair surgery is complete.  Garrett was brought back to his room around 5:00 p.m. 

Good Parts:  They were able to do the repair with tiny incisions using the laprascopic type tools.  Garrett came through surgery well.  He is heavily sedated so he is comfortable.  Which makes me very at ease.

A little disappointing part:  They did have to put in a patch to help close the diaphram.  Sometimes they are able to close it without a patch.  How I look at it is pretty simple:  If Dr. Yang felt the need to use a patch than I am sure it was needed.  The patch will forever be in Garrett and a reminder of what he went through his first few weeks of life.  The left lung appears to be about only about half a lung.  We will see how much it can inflate now that all the extra organs are out of its way.

We are no where near out of the woods with our little CDH Fighter.  The repair surgery is one of the small steps these babies take on their road to recovering from a severe birth defect.  Now that the surgery is complete however, we can move even farther down the path to get Garrett healthy, happy and HOME!

Garrett is in Surgery

Garrett has officially been taken to surgery.  I waited to post until it was 'official' since the decision to operated has fluctuated so much.  He had a good morning and they were able to wean him off all the necessary meds this morning.  He went in for surgery around 1:30.  It will be at least 2 to 3 hours.  They are hoping to do the surgery with all small incisions.  So now we wait.........


Garrett's Room in the NICU.  I guess when you get close to being here a week they make a sign. ;)
 Meeting of the minds.  Docs making rounds in the morning discussing Garrett's treatment plan for the day.  The pic is lousey because you only see a few people of the 'team' that visits our room daily.
Sleepy baby before surgery.
The operating team arrives to take Garrett to surgery.

 Below they have disconnected his ventilator and have to bag him up to the OR.   A little nerve wracking for his mother.


And off they go to sugery.   I hope they take good care of my baby.........



Monday, April 25, 2011

Surgery.......

Garrett is not doing very well tonight.   If he does not improve, surgery may not be possible.  We will not know if they will operate until tomorrow most likely.  He has to improve overnight.  He just has to.

Repair Surgery

Garrett's repair surgery has officially been scheduled for tomorrow:  Tuesday, April 26 @ 1:00 p.m.  He has improved to the point that it is now time for the surgeons to try to repair him. 

Thoughts and prayers will be much appreciated tomorrow afternoon.

11:00 a.m.

Garrett had a bit of a rough night last night. Since he has been weaned off a lot of his stuff, he much more AWARE.  And he is very aware than he does not like a tube down his throat.  He did keep trying to pull it out last night so they ended up having to sedate him a little more than they have been.  I REALLY think he needed it.  He was not a happy camper :(

This morning has been a little smoother.  When I arrived he was resting peacefully -- see below:


Until these people arrived however.  Garrett had to have an Echocardiagram done of his heart this morning.  He does not like to be messed with much.  Therefore these people really shook up his morning.  He did calm down fairly well after they left.  The Echo will help the docs determine exactly when they will do the repair surgery. 




Sunday, April 24, 2011

Hi Mama!


I know these pics are dark, but Garrett was wide awake this evening so I wanted to put some pics on of him with his eyes open.  You can click on the images to make them larger.



This is one of Garrett's night nurses, Katie.  She has had him the past couple evenings.


Easter in the NICU

The NICU is a lonely place on Easter :(  I feel so sad for the babies and kids at Cardinal Glennon who cannot leave.  Luckily my little Garrett is only 4 days old and does not realize he is missing egg hunting action.  The pic below is a little dark.  I try not to use my flash when I am in his face because he does NOT like it at all and it was dark in the room today when I arrived.  He is sleeping pretty good here.


Uncle Phil and Aunt Sarah gave Garrett the CUTEST easter hat and blanket (gotta love Nordstrom).  However Garrett was a litle jumpy today so we opted to not try to put it on for a picture.  Either way I had to post a pic of it because it was so darn cute!

 
Since the NICU was SO SLOW today, I took it as an opportunity to snap some pics.  Here are the wash bins.  Everyone must scrub in for 2 minutes when you enter the NICU.
Parent showers for when you are here longer than anticipated.
Parent cafe -- assorted drinks, microwave, tv, lounge area.
 The Orange Hallway in the NICU.  Where we live these days. 
 I also learned Garrett has 1 of the 2 largest rooms in the NICU - Room 1888.  They are for the very sick babies that may need ECMO.  We may have to move rooms if a sicker baby comes in; otherwise we get to stay in the larger room even though we have not needed ECMO.
Garrett's weekend day nurse, Anna.  Anna has been with Garrett for the past three days.  She has, like Christy, also done a marvelous job.  I told Anna that I felt being a NICU nurse would have to be a very sad job at times.  She told me that even though there have been sad moments, the satisfying moments of working in the NICU HEAVILY outweigh them.  I really liked that attitude. :)


3:00 p.m.

I took the morning off from the hospital this morning to spend some Easter Time with Grant at home.  He hunted eggs (indoors due to rain) and then we made a giant easter egg shaped rice krispy that he decorated.  Lastly headed to my in-laws for a big Easter lunch.  Now I am back up at the hospital for the rest of the afternoon and evening. I am very lucky we live so close to Glennon; it has made it that much easier on all of us.

Garrett has still been progressing on the path we are wanting him to.  Around 1:00 this afternoon they completely weaned him off of his Nitric Oxide. He is a little more fidgetty this afternoon I have noticed, most likely from having to do more and more on his own.  He may be getting a little dose of some more sedative here shortly to help calm him down some.  Even with being a little restless, his vitals are doing just fine off the Nitric.  So at this point he was been weaned off all meds that the docs were hoping they could get him off of prior to his repair surgery.  YEA GARRETT! 

Just an FYI since most of my close friends/family are not that familiar with CDH.  Garrett has done remarkably well over the past few days.  The first 24 hours were a littel scary as he had a lot of trouble stabilizing.  But since then he has amazed us all.  The stress these babies have to deal with is unreal.  Their organs are displaced/underdeveloped and not ready for life outside the womb.  HOWEVER they look on the outside like some of the healthiest babies in the NICU when in reality they are some of the sickest.  Thus the reason why CDH babies are given a 50% chance at survival. 

Saturday, April 23, 2011

4:45 p.m. - Drug Report

Garrett is now completely off of his Dopamine and Dobutamine -- both his blood pressure meds.  He seems to be handling this pretty well thus far.

His Nitric Oxide is down to a 2.7, they will continue to wean it slowly hopefully all the way down to 0 by beginning of next week.  This was one that was being weaned increments of 5, so it appears we are hopefully in the home stretch!

Happy 3 Day Birthday!

Garrett got bundled up today in this little cozy thing.  He seemed to really enjoy it.
 Curling up his itty bitty feet.

Honey Bear guarding the isolette and wearing Garrett's blood pressure cuff.
Sleeping the day away. 


Garrett's Nurses

This is Garrett's first nurse, Christy.  She has been a nurse for 25 years.  She is a pro in the NICU here at Cardinal Glennon.  His day nurse for this weekend is Anna.  I will have to get a pic of her also.  I am normally at home when Garrett's night nurses are here.  They work on shifts from 7 to 7.  Garrett has his own nurse.  A lot of the nurses here cover multiple babies; Garrett's nurse only covers Garrett.  So he gets a lot of one on one attention when needed. 


     Another added BONUS of Cardinal Glennon is that they are one of the FEW NEWER PRIVATE NICU's.  Each room is private.  Normally NICU's are set up in large open areas with a nurses station in the middle and isolettes around the outer area of the room.  So Garrett has his own room here at the hospital and his own nurse. 

7:30 a.m.

Just called in to check on my munchkin #2 this morning.  He had yet another pretty 'uneventful' night.  I am beginning to not only like that word but love it.

They did have to put him back on the lowest level of Dopamine just to help with his urine output. Considering we have been moving at a pretty good forward pace, one step backwards is completely normal for CDH babies.   However they weaned his Nitric Oxide down from a level 10 to a level 5.  And he seems to be handling that just fine!  From here on out with the Nitric they will wean 1 level at a time from 5 to 1.  They do have to keep him fairly sedated and he does not like to be bothered much by the nurses.  So they leave him alone unless they have to move his position or change a diaper.

Paul headed up early this morning and is up there now.  I am going to get ready and head up for the day a little later this morning. 

Continued thoughts and prayers are always appreciated!  Our little guy is making me very happy.  It is to way to early to be EXCITED, because CDH is ALWAYS a rollarcoaster.  We are still very hopeful for a repair surgery at the beginning of next week.  Our main goal is to get him weaned off as much 'stuff' as possible and keep him stable.  If he stays on the track, Dr. Yang feels we can do the surgery with small incisions, a kind of laprascopic procedure (not quite the right word, but you get the idea).  It is much less invasive and easier on the baby.

I hope to get more pics up this afternoon of our little guy,

~Janna

Friday, April 22, 2011

3:45 p.m.: Dopamine

Garrett was just completely weaned off of his Dopamine, one of his many drugs.  This one was for his blood pressure.  They have slowly been taking it down all day and he is now completely off of it.

Next they start weaning off Dobutamine, which is his OTHER blood pressure med. 

Told you, LOTS of drugs.  But at least now there is one less!

Labor & Delivery

Disclaimer:  This next post is about labor and delivery.  Do not read it if you do not want the details.  It is a “PG” rating.  But let’s face it:  Labor and Delivery is Labor and Delivery!!!!!!!
Most of you probably noticed there was a lull in posts during my labor with Garrett.  We REALLY hit a standstill with the Pitocin.  I dilated to a 4 very quickly, and then just stopped progressing for HOURS.  They kept upping my Pitocin level.  Considering I was contracting away when it was set on a level 2, I was REALLY contracting by time they upped it to a 14 – which is the highest we got to (even though the machine goes up to a 20).  
            Around 10:00 at night I was exhausted and still had not progressed.  We had started Pitocin at 8:00 that morning, so I REALLY needed to sleep a little.  They kept trying to give me some IV pain meds, which I kept telling them I didn’t need, and finally I gave in.  They gave me some medicine to help me sleep through my IV.  This stuff was hysterical.  They told me it would make me a little goofy; it made me BEYOND goofy.  After making some crazy comments to my family, I started laughing uncontrollably for a solid 5 minutes and then immediately fell asleep.  To bad the drug only lasted short term and within an hour it had worn off.  They gave me another dose which wore off even faster. 
            Next thing I remember is waking up and noticing the medicine had worn off and my contractions were crossing my pain threshold.  I told the nurse that it was time for the epidural.  They checked me and I had progressed enough (FINALLY) to get it.  At his point I kicked my mom out of the room because I was turning ‘not very nice’ do to the pain.  It was just after 1:30 in the morning at this point.  They ordered the epidural and my mom went and got Paul from the lounge area where he was with my dad.  Paul tried to come in when they were getting ready to do the epidural and got yelled at by me, twice.  So he waited outside.
            Once the epidural was in place I was, of course, a MUCH HAPPIER CAMPER.  This was about 2:00 a.m.  I finally settled in for a little sleep and Paul got situated in the recliner in the room.  I was in active labor at this point, so even with the epidural, the pressure from the contractions kept waking me up.  So I was dozing on and off.  Just after 3:30 in the morning, while I was half asleep, my water broke on its own.  And when I say broke, I mean BROKE.  I had a high amount of fluids, which is common with CDH babies.  I thought someone turned on a hose for trying out loud.  The bad part was, my water broke with such force that Garrett almost came out with it. 
            Paul sprang into action.  I called the nurse.  She came down to the room and checked me.  She told me NOT to sit up or uncross my legs again.  Garrett was seriously about ready to pop out and I REALLY NEEDED to deliver in the OR if possible.  She stepped out of the room for a second and I swear at that moment I thought he was coming out with or without a doctor.  I told Paul to tell SOMEONE to get back in there with me.  He literally ran in the hall to the nurses’ station saying something to the effect of, “The baby is coming out!!!!!!!!!”  The doctors and nurses fly in the room.  The doctor tells me to try to hold it in so they can get me to the operating room.  So I am LITERALLY crossing my legs and not breathing because this baby felt like it was going to fall out.  They race me down the hall and the doctors are getting dressed in their operating gear as they are running down the hall next to me.  It seriously felt like I was in an episode of ER or something.  They get me to the OR, put my feet into the stirrup things, FINALLY let me push and he popped right OUT.  Geesh.  If I have a third child there is a good chance I would have him in the leg of my pants gauging by how fast Garrett came out.  Incredible. 
            Since he came out so fast.  He had a PERFECTLY round head.  I was amazed.  He was also a very pretty baby who looked NOTHING like his ultrasound picture.  If I hadn’t have seem him come out I would have doubted he was the same baby!  They immediately took him away after birth, which I knew was coming.  I was a little sad; but I also knew it had to be done and was best for HIM.
            I (yes I am totally patting myself on the back) recovered like a champ.  I was up on my feet within the hour following delivery to go use the bathroom and such.  I even moved to a new recovery room before Garrett had even been transported.  MUCH DIFFERENT from my first recovery experience.  I have only been taking Motrin for a little cramping; other than that I was released the next morning to join Garrett at Cardinal Glennon.
            I’ve been spending my days at the hospital with the baby; my nights and early mornings at home with Grant.  Grant will get a little less mom time over the next few weeks.  However I am hoping to even out my time a little better once Garrett gets his repair surgery and is on a nice road to recovery – positive thinking here.
             So that is why the blog did not get updated for a little while.  Considering this entire pregnancy has been so tumultuous, it was nice at least the delivery was SUPER EASY (once the labor part of over of course ;)

10:00 a.m.

Well Garrett had an uneventful night.  That is EXACTLY what I want him to be -- uneventful.  He is still stable and they have continued to wean him down on his drugs and oxygen levels.  He has been tolerating it quite well.  The more they can wean him down before his repair surgery the better.

Met with Dr. Yang already this morning.  Dr. Yang is codirector of the Fetal Care Institute and one of the Pediactric Surgeons here at Cardinall Glennon.  He has done remarkable things with CDH babies. He was in Garrett's room when we arrived.  He feels Garrett is doing very well at this point.  Once again, I will take "very well".  Still on the right track for his repair surgery to be at the beginning of next week as long as he remains stable.

The only time he seems to get upset is when he is resting peacefully and they try to move him.  He gets pretty mad when his sleep is disrupted.........not sure who he got that from..........;) 

Thursday, April 21, 2011

Garrett's NICU Room


(Click on Image to View Larger)

Happy 1 Day Birthday!

 A little eye open action.



Honey Bear

     Taking the lead from the Fetal Care Institute, instead of doing a transport blanket we did a ‘transport bear’.  I let Grant pick out a bear, that he named “Honey Bear”, to travel with Garrett and stay with him in the NICU.  Directly after delivery I held the bear to my chest.  Women release pheromones directly following delivery.  The point of doing this is so the scent lingers on the bear and will stay with the baby while he is away from his mother.


Honey Bear now lives with Garrett in his isolette.



Noon --

Well Garrett has had a much better day thus far today than last night.  Everything has slowly been regulating and, thanks to may marvelous specialists, they have been adjusting meds to find what seems to work best for him.  He is resting peacefully at the moment.

X-rays show is lung tissue has expanded some over the past 12 hours, which is never a bad thing for a CDH baby.  It is actually a very, very good thing. Yet to early to get "too excited".  If he stays as stable as he currently is for a few days, he could possibly have his repair surgery at the beginning of next week.  RIGHT NOW, we are just praying for STABLE :)

~Janna

Quick Update: 8:30 a.m.

Thanks to an easy delivery, I am getting released from the hospital momentarily to go join baby over at Cardinal Glennon.  Paul is here picking me up.  Garrett did take some steps in the wrong direction last night.  Hopefully today we can get him as comfortable and stable as possibly.

~Janna

Wednesday, April 20, 2011

Our Little "Feisty" One

Not really enjoying being intubated.
 Settling down.


Getting situated.



Getting ready to be transferred to Cardinal Glennon by transport team.

Garrett at Cardinal Glennon......his new home for now.


My first baby, Grant Rylee, FINALLY got to come see me.  I was so happy. :)


He has arrived.

Quick post for now: 

Garrett Mason Caravia (arrived in true stubborn Caravia style) @ 3:47 a.m. this morning -- April 20, 2011

He was stabilized and transferred to Cardinal Glennon around 7:00 a.m. this morning.  I few litte hiccups, like he is quite "feisty" as the doctors told me and pulled his breathing tube out 3 times before they had to restrain him.  Apparently he wanted to breathe on his own :)  They told me he is "going to be a handful", which I kind of assumed from how he was in-utero.  He needs to have lot of fight in him to get through the next several weeks/months; so that is a good thing!

I (mom) am doing GREAT!  So is Paul (daddy), who went with Garrett and has not left his side.

Prayers are NOW needed more than ever.  He will HOPEFULLY have a farily smooth couple days before we begin the CDH rollercoaster.  Pics and lots more details coming soon!  I just had to get an quick update on here!!!!

~Janna

Tuesday, April 19, 2011

6:00 p.m.

Seriously unreal.  My pitocin had been on a level 2 causing regular contractions starting at 8:00 a.m..  It has been upped to a 4......then a 6..........and now an 8. 

Still no action from the progress end.  If they up the pitocin again I'm callin a cab ;)

4:00 p.m.

Sorry all -- boring stuff here.  Baby does NOT want to come down. 

They just upped the Pitocin.  :(  Ouch. 

I am super bored and wanting to get this shin-dig on a roll...........

1:45 p.m.

No news.  I am stuck in a rut with the progress.  As soon as I dialate a little more they will break my water/i'll get the epidural.  I'm tired of contractions every minute.  Geesh...........

Time on the Blog

FYI -- When I post things on the blog pay NO ATTENTION to the time listed.  Currently is is 12:34 p.m.  The time listed on the blog is off by hours.

laboring still.........

Still sitting at a 4, just laboring away.  Contractions come every minute.........it is now the waiting game.  Waiting to dialte a little more to get the epidural still.  They said once I get to a 5 or 6 I'll probably go really quickly since it is my second baby.  It is just a matter of getting there at this point.

I was not exactly labor ready when I came in today.  Baby was still a little 'high up' and my cervix was not that thinned out.  So we WAIT for those two things to move a little more towards DELIVERY READINESS and we are good to go! 

I, OF COURSE, am losing patients.  I am totally a "let's get the show on the road" kind of person!

We are at a 4.......

Dialated to a 4 and contracting away.  I don't need the epidural yet, I am handling it well still at this point.  Once I dialate a little more we will bring on the epidural!  Baby is handling contractions just fine.  Good heart rate :)

Let the games begin......

Started induction officially around 8:00 or so......contractions are tolerable at this point.  Now we wait.

Monday, April 18, 2011

So tomorrow is d-day.  I finally broke down this evening and took a few pictures of myself pregnant this time around.  During my first pregnancy I took pics regularly to document the ‘growth of the belly’.  This time for some reason I was not into it at all.  Probably just the circumstances surrounding the pregnancy I guess.  Anytime I would think that I need to take some pics of my pregnant self I would decide to put it off.  Here it is the night before I go in to be induced and I decide I better take at least a few pictures of myself pregnant or I may regret it.  I had just got done crying when I took this picture because I decided to have Grant stay the night at my in-laws since we are leaving the house so early in the morning.  I wanted him to be able to get a good night’s sleep for school tomorrow and with all the ruckus we will create, I knew it was for the best.  But I still cried when he left.  So my face was blotchy and that is why I am NOT looking at the camera.
As anyone would expect, I am very nervous about tomorrow.  Hopefully the labor and delivery goes fairly smoothly (not counting my chickens though).  And we can get the baby stabilized and transferred smoothly as well.  Then we will, most likely, begin a 24-48 hour honeymoon period where he will be fairly stable before things get hairy.  L 
Thank you to everyone for you good luck wishes and prayers – I have read every single one of the comments on this blog.  Thank you to EACH OF YOU that takes the time to send you thoughts/prayers/well wishes our way.  It is more appreciated than any of you will ever know.

~Janna

Friday, April 15, 2011

CVS Pharmacy

My soon to be sister-in­­-law Ashley (as of May 14th!) is a Pharmacist at CVS.  She just sent me an e-mail saying that 3 of her stores in the Alton, IL area are going to help promote CDH awareness on April 19th  for the National CDH Awareness Daily Celebration.  Here is a clip from the e-mail:

“On Tuesday for National CDH awareness day the 3 Alton CVS stores will be handing out flyers with information about CDH as well as wearing pastel blue, pink, and yellow ribbons and clothing to help get the word out. These 3 CVS stores will all be selling ribbons to customers as well as taking donations to in turn give to CDH research. Everyone is praying for baby Caravia even though lots of them have only heard about your story at CVS and will never meet you. Just know we are all praying for you guys.”  

I, of course, started to cry when I got her e-mail.  I think this is SO THOUGHTFUL that I don’t even know what to say. 

Thursday, April 14, 2011

Induction

So we have officially scheduled an induction.  I am definitely a little nervous about that!  Not so into the pain associated with the Pitocin.  But I am willing to do whatever I have to obviously.  If I make it through this weekend without going into labor on my own, I will be induced this upcoming Tuesday morning (April 19th).  Ironically April 19th is an annual CDH Awareness Daily Event to help promote awareness of the birth defect.  So I find it interesting that is the date my OB has chosen for the induction.  Just a fluke that that is the best day for her next week -- weird.  Another ironic thing is that this is scheduled 3 days past my due date.  I had Grant 3 days past my due date as well.  Very interesting.
            My doctor feels that a somewhat controlled delivery with this baby is a pretty decent idea and I agree.  This way the staff at the hospital will be prepped and ready to handle a baby like mine that is going to need a team of people once he is delivered.  Talk about making an entrance.  All we need now is a brass band.

Monday, April 11, 2011

The Western Wall

For those who do now know me that personally, my parents are two different religious backgrounds.  My dad comes from a very strong Christian background; while my mother and her family are of the Jewish faith.  My parents raised both my brother and myself to believe in God and believe in ourselves, and yes we celebrated both Hanukkah and ChristmasJ.   
  When I was in college I qualified for a free trip to Israel.  As my best friends say, “I played my Jewish card.”  Due to my Jewish heritage I got a free 2 ½ week all expenses paid trip with a large group of college students.  It was an eye opening excursion.  One of the main things I remember from the trip was my experience at The Western Wall (The Wailing Wall).  I can see why so many people of different faiths consider it to be one of the holiest places on earth.  There is some force there.  What it is I am not sure.  The best way I can explain it is that it felt like I had a direct connection with God and he was listening to every word I was saying.  I am not an overly religious type person, so for me to even say this is interesting.  The main point is  -- I feel if God is listening, he is listening more there than anywhere else on this earth.
                My Aunt Linda is in Israel on a trip this week.  She went to the wall today in Jerusalem.  She left a note for me and my baby asking for a good outcome.  I can’t imagine a better place to leave such a request.

Thursday, April 7, 2011

Yet More Appointments

Yet another round of doctors’ appointments……..starting with my regular appointment I am dilated to 1.5 at this point.  Which pretty much means we are moving in the right direction.  During my stress test I was actually having small contractions every couple of minutes, even though I could not feel them at this point.  No complaints here that I’m not feeling them.  The doctor didn’t seem too concerned about them so neither did I.  At my Fetal Care Institute (FCI) appointment I had, you guessed it, another ultrasound.  Everything is just trucking along; no big surprises other than the obvious. 
The FCI docs said I didn’t need to make another appointment because they thought I would be seeing them before that anyway.  Wow.  That was a reality check.  I guess it looks like this baby is actually coming in the next few weeks.  Since this has seemed to be the longest pregnancy ever, it is weird to finally be in the home stretch.

Tuesday, April 5, 2011

The Waiting Room


I sat in a crowded waiting room yesterday waiting for another stress test and took some time to look around me. I was surrounded by pregnant women. One of them was reading a book on how to have a “Happy Baby”. Another two of them were reading childbirth/parenting magazines; while another 3 or so typed away on their phones. As expectant moms entered and exited the waiting room, many of them made eye contact with me and immediately smiled. I know what each of them is thinking…….”Oh look! Another pregnant lady just like me! She is big and uncomfortable and soon going to have a wonderful buddle of joy.” I know this because this is how I felt during my first pregnancy. This time around I get a little sad when each one of them smiles at me. Yes I am big, yes I am uncomfortable, however, I am not going to receive a healthy buddle of joy. I can’t help but be a little envious of the other mothers. Not jealous, just envious. Meaning I want to experience the same joy that they are currently experiencing. Carrying this baby has not been joyous. The moment he comes into this world I have NO DOUBT I will be overcome with joy for a fleeting moment. However, there is no way to avoid the fact that the joy will be all too closely followed by a lot of uncertainty.

Monday, April 4, 2011

The "Cost" of a Sick Baby

Unfortunately tonight I find myself panicking about what this entire process is going to cost.  Then I have these revelation moments where I think to myself, “Who cares what it costs!  You can’t put a cost on my baby’s life!”   But then I find myself STILL thinking about the bills that are going to pile up.
Really………..Janna……..pull it together. 
What this whole thing is going to cost SHOULD BE the last thing on my mind.  However the cost of healthcare in the United States completely boggles my mind.  It appears that a lot of CDH baby’s hospital bills reach into the millions.  Yep, that would be MILLIONS.  As in what I dream about winning in the lotto.  I can’t help but wonder exactly what I will have to pay out-of-pocket.  Will I spend the rest of my life paying off medical bills?  Considering my prenatal care has already reached into the tens of thousands…………I can’t see this having a good ending………
This pregnancy has already cost me plenty…..plenty of stress, plenty of heartburn, plenty of nausea, plenty stretch marks, plenty of sleepless nights,……….you get the idea.  And they want me to pay money too!  I feel my dues should be marked paid in full.

Sunday, April 3, 2011

Stress Tests

     I am now having stress tests to monitor the baby 2 times a week after work.  I just stop on my way home and they hook me up and ‘monitor’.  During my last stress test the baby’s heart rate was low.  I stayed hooked up for a while with no change, so I was given some Coke (for the caffeine) to try to get things looking better.  Still no change.  So then I had to go in for another ultrasound where they did a fetal Apgar score.  It is similar to how babies get an Apgar score after birth, but they look for different items.  Luckily, after being at my doctor for what seemed like forever, the baby cooperated great for the ultrasound and quickly scored perfect on his evaluations.  And, most importantly, I got to head home!
     I am concerned how the baby’s heart rate will handle labor and delivery.  Two reasons – First of all, the heart is displaced, so who knows if that will affect anything.  Secondly, Grant’s heart rate dropped drastically during delivery and he was a healthy baby.  I have already been told that if his heart does get stressed at all, he will be coming c-section.  I could care less how he gets here.  The only bummer with the c-section is that I will be out of commission longer and not able to get where I need to be – which is by his side – as quickly as I would like.

Due Date????

My due date is somewhat questionable.  According to my ultrasounds it is calculating for April 26th, so that is what I have been aiming for.  However, according to the normal way you calculate my due date would be April 16th.  So I am a little nervous as to when I will actually go into delivery since that is a 10 day span.  The reason I am starting to question the April 26th due date is because some of the babies measurements from the ultrasound can be off due to the fact that his belly measurement is not that accurate.
                With my first pregnancy I went 3 days past the ultrasound due date.  So that would put me at April 29th.  Hm.  I wonder where I will end up!

Friday, April 1, 2011

Some Things to be Aware of.

            There are some things that go along with CDH babies I feel that I should give everyone a heads up about.  In the words of my mother, “Forewarned is forearmed.”   ***Some of you may not want to read this list.  You may find it slightly upsetting.  However, I would rather post it now, instead of having everyone fall apart once the baby comes.
·         The baby will not be able to cry.  He will be intubated directly following birth.  So there will be machines breathing for him, tubes everywhere; not gonna sugar coat it.  With all these tubes in place, it will keep him from being able to cry.  This does not mean he will not TRY to cry, he just will not be able to make any sound.
·         The 2 things that work will be working against my baby the most are going to be Pulmonary Hypertension and Pulmonary Hypoplasia.  The Pulmonary Hypertension is extreme high blood pressure.  With the baby’s lungs being underdeveloped, the heart pumps faster than the lungs can process.  Pulmonary Hypoplasia is basically the underdevelopment of the lungs in general.  A lot of babies do not make it due to these 2 factors. 
·         ECMO – (extracorporeal membrane oxygenation) is a machine that provides cardiac and respitory support oxygen to patients whose heart and lungs are so severely diseased or damaged that they can no longer serve their function.  Many CDH babies have to be put on these machines.  They are scary, yet they keep them alive by doing the work of the baby’s heart and lungs to give the actual organs themselves time to grow and develop while the machine keeps the baby alive.
·         We cannot hold him.  With his condition being as severe as it is, he is whisked away and stabilized.  His condition will be too fragile for us to be holding him like a normal newborn.  Not so looking forward to this.
·         He will be sedated.  To what degree depends on him and how he handles everything.
·         He will have to undergo surgery or surgeries.  If he has to go on ECMO it requires surgery.  He will also have to have his repair surgery done when he is stable enough to go in for it.  Could be 3 days after delivery or 30.  No way to tell at this time.
·         Re-herniate – A lot of CDH babies do re-herniate at some point.  This is something you have to keep a watch for long term with CDH survivors.