Another Successful Surgery

Today was a good day and I'm drained physically and emotionally!  Surgery was at 12:45PM and we arrived at the hospital a little after 11AM.  We hung out with baby and she was a little worked up but we managed to keep her stable and comfortable until surgery.  At 12:45PM we were off to the holding room in the operating room area.  After a few minutes of taking care of some pre-op formalities, Sophia was off to surgery.  Oh!  I remembered to tell the surgeon to make the incision pretty before they went in this time.  He smiled, gave me a thumbs up, and said "I will".  

Mr. Man and I had lunch in the cafeteria in our favorite spot.  Usually, we eat right underneath Sophia's room so that we can channel our thoughts and energy to her.  When we were done, we headed back to her room.  A couple of the nurses stopped us in the hallway to ask us if she got off okay.  Before I knew it, Sophia was turning the corner!  At 1:46PM she was back in her room.  The surgery went well and there were no complications, yay.  Here's another pictorial depiction of today's events.

This is the tube that caused today to happen.

 I'm grateful that it has sustained her life but I am ready for it to go!

 In the holding room waiting for the operating team to come get her.  Eventually, they came and she was off to surgery.  

Here we are out in the hallway after lunch talking to some nurses.  Out of nowhere, here they come back from surgery!

  It's always a good sign when you see all smiles coming back from surgery.

There it is.  The trach.

This is the first time since she was born that I have seen her face without anything on it!  There's  always a tube coming or going in and out of her nose or mouth.  When she was born, I saw her a brief second and she was off to NICU.  I made a comment that I feel like I just gave birth because I'm seeing her face for the first time since February 9th.  Everyone laughed but I was serious.  I barely remember kissing her at birth because there was so much chaos going on.  Anyway, I'm always bobbing and weaving to give her kisses and it was nice to lean in and kiss her without having a "plan" to do so.  I stared at her for 45 minutes easy.  

  Unfortunately, she's going to have to be heavily sedated for the next couple of days until her trach site heals.  Otherwise, she'll be wide awake, in pain, and will probably rip her tube out.  We do not need for that to happen.  Today was a good day!  Once again, job well done baby girl :o)

Surgery #6: Tracheostomy

Here's the thing.  Lynette is not getting better being on her back everyday.  She's not swallowing well and her secretions are out of control.  I am suctioning her nose and mouth every five minutes when she's awake.  The tube in her throat is making her gag way too often.  Riding out one of those episodes is hard to watch.  We are also afraid that keeping a tube in her throat may cause long term damage.  In other words, we're afraid that she may not be able to talk.  She's fine now but we don't want to stand by while her vocal cords are being trashed because she's trying to take her tube out because she's uncomfortable.  Seriously, I'm just now getting use to hearing her cry.  That's a lie.  I haven't heard her cry enough to pick it out of five crying babies.  Why?  Because her vocal cords are always swollen and there's never sound coming out.  Having a trach will also allow her to be mobile.  We can give her a real bath instead of a sponge bath.  She can do tummy time without us having to be careful of whatever tubes and machines she's connected too.  As much as I hate the idea of her going into surgery one more time, I feel like we have to try something else so that she can get better and speed up the process of her coming home.  The tracheostomy is scheduled for tomorrow.

Rough Week

7/16/12

Sophia is sweaty, having chills, and her heart rate is high.  We also weaned her oxygen because that is what we do on Mondays.  The girl was absolutely inconsolable.  I placed her on the mat for tummy time and she slept the entire time.  I'm concerned but I'm also thinking maybe she's just having a bad day.

7/17/12

Sophia is still sweaty, having chills, and her heart rate is high.  Then I found out that her methadone and ativan doses have been reduced to HALF of what she is typically given.  Plus, it was scheduled to be given every 24 hours instead of every 12 hours.  Turns out that the sweat, chills, and elevated heart rate were signs of withdrawal.  Great.

7/18/12

The doctor called and said that Sophia is having a hard time breathing.  Unfortunately, she is demoted to the bubble cpap.  I was a huge emotional mess.  The nurses called the chaplain to sit and pray with me and Sophia because the situation was so bad.  He said the sweetest prayer and it calmed me down a little.  The doctor put Sophia back on her drugs.  I think I took everything so hard because we were hoping to have missy home by the end of the month.  THAT AIN'T HAPPENIN' NOW!

7/19/12

Then it hit me.  It was too much...too soon...too fast.  Weaning her oxygen on Mondays has always been fine.  The only thing that changed were her meds.  X-rays were taken and her lungs are a mess again.  After demanding some answers, I don't know if her lungs were crappy first and that is what set her off and she needed her drugs to manage her pain???  Or, because she didn't have her drugs, she was going through withdrawal and her lungs went to crap???  Either way she was trying really hard to tell us something was wrong. 

7/20/12

The on call doctor called me at 8:11AM and informed me that Sophia had a rough night.  She's not breathing well and her blood gasses were not good.  He put her on the conventional ventilator.  She's no longer breathing on her own.  I called Jeremiah at work to give him the update.  He came home and we rushed out to the hospital to be with her.  After a few hours we decided to get lunch.  I called to see how Sophia was doing and her nurse told me that she had extubated!  She had pulled the tube out of her throat and was waving it around in her left hand!  Then, when the nurses were trying to put it back in, she was biting the tube!  She was giving as good as she got and I couldn't be more proud!!!  Sophia was stable after they resuscitated her.

7/21/12

It's all fun and games until someone gets hurt.  She's now on a morphine drip to manage her pain and they are keeping her sedated so that she doesn't get worked up or extubate herself.

She looked like this when we arrived at the hospital Saturday.  It's hard to believe that she looks like this after she's been doing so well for the past several weeks. 

 The "no-no's" went back on so that she can't bend her arm to reach her tube.  The "house" that is covering her finger tips is to prevent her from using her IV as a weapon to pull her tube out...in case she managed to get out of the no-no's.  She's done it several times before and I'm sure it'll happen again.

 The nurses nicknamed her Sassy Sophia over the weekend.  As much as I hate to see her like this, at least she is getting some much needed rest.

 She is a mess and the smallest little fighter I've ever seen.  I LOVE that about her!

On the counter was this goody bag for me.  One of the nurses brought me some of my favorite things...skittles and celebrity gossip!  If I had any tears left, I would've shed them.  I think the nurses have taken care of me just as much as they have taken care of Sophia this week.  By the way, I would never buy any of these magazines.  Better Homes & Garden is more my taste I promise.  Celebrity gossip is just a recent distraction from all of the drama in my life.  Please don't judge.

More Tummy Time

When we arrived at the hospital last Sunday, Miss. Sophia was all ready for tummy time!  One of the charge nurses gave her a bath and scrubbed her down before we arrived.  Lynette was clean from head to toe.  I was so glad that she got rid of Lynette's cradle cap and the iodine that was on her scalp.  Afterwards, the nurse put her on the floor for tummy time.  I was extremely pleased.  Lynette is making some serious progress and we even think that she has come to like life outside of her crib.  Have I mentioned how much I hate that she is bald?  It rained for most of our visit but that didn't stop us from having a great time!

Tummy Time For Real

Last Wednesday Lynette had tummy time for real.  I'm talking on the mat without a boppy pillow.  It was a big day and I was ready!  Unfortunately, she didn't like it one bit.  When baby girl was on the mat, she kept slipping and sliding all over the place and was NOT happy.  Why?  Whenever she cried, she would slip in her snot, tears, and saliva.  It was painful to watch but she has to get out of that crib and off her back!  She lasted six minutes and I gave her tons of hugs and kisses for trying.  She didn't like tummy time but she tried.  I am proud of her for that :o)

She likes to keep her face forward all of the time.  She doesn't know any better because she's been on her back for months.  Even when we hold her, we have to turn her head left or right for her.  Without fail, she'll bury her head in our chests when we hold her.  Don't y'all worry because she'll get there.  Little mama will have neck control in no time...I hope.  Lord knows she still has plenty of fight!

We need to work on upper body strength, too.

She was MAD!  I was actually happy that she was crying this hard because I heard her cry!  Because she's had a tube in her throat from the ventilator, her vocal cords have been swollen for months.  As a result, you literally couldn't hear her cry.  You could always tell when she was crying but there was no sound coming out.

Glad tummy time is over and sound asleep :o)

July 4th

Our July 4th was pretty busy but fun this year.  We went to the parade, ate dinner at my parents, visited Miss. Sophia, and watched fireworks.  The girls handled all of the craziness amazingly well.  Maybe because the events were stretched out over the day instead of everything being back to back.  It was a great day and I'm glad that I enjoyed it with my family.  Enjoy!

The Parade

There were several Elvis Presley impersonators and I loved it.  I don't know why but I loved seeing them riding these little bitty scooters.  I couldn't get enough of them!

 Then the king of them all came down the street.  I'm cracking up laughing just thinking about it again!

The girls were pretty good about waving back to the people on the floats.

Visiting Sophia

Her nurse found some patriotic bedding and it was darling.  They take such good care of her!!!

Fireworks

Jeremiah had this crazy idea that we should watch the fireworks from the top floor of the parking garage at the hospital.  I was skeptical but I went with it.  We got all settled in on the 7th floor and security kicked us off for "safety" reasons.  To be fair, the helipad was within feet from us.  

 Security said we could go down one level so we did.  The view wasn't as great and it was hotter.  Apparently, other people had the same idea because there was a huge parade of us going down one level.  We could see fireworks from four different locations.

   

I had to strategically change Savannah's clothes and she never flinched.  I love to see them sleeping.

July 4th Encore

On July 5th when we arrived at the hospital we found Lynette in her very festive onesie!  One of the nurses in ANOTHER unit got this for her.  Seriously, the girl has developed quite the reputation in NICU.  You can't help but root for her.  Anyway, I think it is so sweet that some of the nurses think about Lynette and get things for her on their personal time.

Sophia's Tummy Time

A few months ago I noticed that Lynette's head was seriously flat in the back.  The nurses rotate her from left to right but baby girl always wiggle herself back on her back.  Additionally, the girl has no neck control.  I am fully aware that Lynette has many health issues going on.  However, the small things are still important.  I have a serious conviction that she deserves some type of normalcy as a baby.  I'm trying to push for several things and tummy time is at the top of my list.  I asked her doctor if it would be okay if Sophia started tummy time and the doctor said sure.  Hopefully, tummy time will also allow Lynette to move around and loosen some of the secretions in her lungs.  Anyway, today we did tummy time! 

 I was too excited about tummy time and I completely forget all about the camera.  She cried but for the most part she did good.  I was so proud of her!  My next goal is to get a mat and put it on the floor for "real" tummy time.  BUT, I did get this one after she fell asleep.

 She eventually cried herself to sleep.  That's good because that meant that she worked hard.  She even held her own breathing.  We didn't adjust her oxygen levels or anything.  Oh, and she's been breathing on her own since last Monday!  She's just on a little oxygen to give her a little help.  

 She woke up for a few moments and wouldn't settle down.  When I picked her up she snuggled back into her comfort zone.  I love our tender moments!  Oh, I promise that I don't have a mustache.  I got sunburned Friday and the sun fried my lips and arms AGAIN.  Yes, I was wearing sunblock.  

Whenever Lynette had an IV in her head removed, the tape would rip out her hair.  Now, she only has a little tail in the back and a little piece on the top her head.  I can't even put in a bow in anymore.  I know it'll grow back but it's still hard to see her bald head after I got used to the strawberry blonde thing.  Oh, last weekend I had my hair done for our weekend getaway.  I had it cut and it's pretty short but I love it!  

Still snoozing.  She was so comfortable that the respiratory therapist and I decided that I should keep hold Lynette while her breathing treatment was being administered.  I can't believe that she slept through it.

When she woke up we played for a while and she tolerated it well.  Missy is also 9lbs and 11oz.

Don't you just love her smile?!  She still has a tough time swallowing and I'm constantly suctioning her secretions.  Hopefully, that's only temporary.  

She was getting tired at the end of our visit.  I read her a story and she was fast asleep.  Today was a great visit with Lynette!