Recovery...

Ha recovery... This child is amazing!  Ok so Wednesday the 17th we arrived at the same day surgery and were taken into a room.  About 45 minutes later someone finally came in and told us surgery had been cancelled.  What the heck! We should have known but I guess we all were just to nervous to notice we had been waiting 45 minutes.  Anyways I guess they didn't have any rooms available in the ICU but they were hopeful that a couple kids would get moved to the step down unit later that day.  So they told us to come back the next morning at 6:30 am and that hopefully we would have surgery!  So of course we were all upset and poor Lainey was so confused!  

Ok so Thursday October 18th we made our way to the hospital at 6am, we were not gonna be late!  By 7 Lainey was given versed and ready for surgery.  She was so good, calm and cooperative.  She had us all cracking up and I think her being so at ease made us much less nervous.  So we all got to walk her back to the operating room and she was so loopy she didn't care, it was so cute.  So we told her bye and went out to the waiting room.  They told us surgery would be 416 minutes and they would update us every 1.5-2 hours.  We got our first update around 9 o'clock saying surgery was starting, so from 7:30-9:00 she was getting all her lines and getting prepped.  I can't remember all the updates but the time went really fast.  At noon or so they came out and said that they were finishing up and closing her chest.  I think by 12:30 or 1 Alex and I were allowed to go back to the cicu and see her.  As soon as we got back there Lainey was awake and just kept saying she was thirsty.  She wasn't allowed to drink anything for at least 4 hours after surgery, poor girl!  The only time I shed any tears was when she cried to me "mommy I'm sssaaaadddd" I felt terrible.  I didn't expect her to be awake ten minuets after surgery let alone crying she was thirsty and telling me she was sad.  Mostly she was pretty calm just thirsty a couple of times she tried to sit up and a couple of times she started freaking out about all the stuff connected to her.

So later that afternoon she was finally allowed to drink and she was so happy!  She did good they finally turned off the sedation medicine and once that weirded off she got very anxious.  She could feel all the tapes and stickers and what not on her. She didn't sleep good because every time she moved she would feel the catheter taped to her leg and she would freak out.  So they removed her cath and then she had to put a diaper on which didn't make her happy.

So Friday afternoon she was moved out of the cicu and to the step down unit.  Before she could go they removed her a line and her pic line.  That was not fun!  Her a line shot blood across the room it was gross.  Later that afternoon they removed her chest tube.  That was not great she flipped out and kicked and screamed.  But once it was out she could get up and walk and go play.  Well they removed that at 4pm and at 5pm she got to ride a little car down to get a chest X-ray.  As soon as we got back they said that there was air in her chest and she couldn't go down to the play room.  They thought about putting her on oxygen but she wasn't having it.  They also said there was a chance of being moved back to the cicu and getting a chest tube.  This was on of our biggest fears because she had one put in last surgery and they said they were very painful.  So the rest of that night they told her to take it easy so she did crafts.  They said the next day she would have another chest X-ray.  

So on Saturday I saw the doctors out doing rounds so I went to listen.  Dr. Manning said that she could go home that day or the next depending on what the chest X-ray showed.  So her X-ray was scheduled for 3pm.  Before that she was able to go to the playroom so she was having a ball.  After her chest X-ray we were discussing changing her dressing and giving her a bath.  At 4 they gave her Tylenol and then she was gonna come back in a bit to do the dressing change.  Well instead she came back in and said we could go home.  So we were going home after they removed her iv and took off her dressing.

So I forgot to mention that the only medication she was on for pain was Tylenol and ibuprofen and after the day of surgery she was only using Tylenol.  How crazy!  Since Saturday when we came home she has had a little appetite and really no pain.  We made her take Tylenol because she would get the hunched back look, but once she got Tylenol she was up jumping and running all around.  So today she has refused and Tylenol and has done great, maybe too great!  She has been walking around in her play high heels, playing soccer, running, twirling, dancing and playing with balloons.  So the only issues we are having are, first she still won't let us take off the stickers for her heart monitor leads.  I mean seriously you would think we were murdering her if we even touch them.  And two she has too much energy and no fear or understanding of what she went through.

So thank you to everyone who thought of Lainey and prayed for her!  They also said they were able to put in the same type of homograft conduit and one big enough that it should last her at least ten years! Woo Hoo!  They are hopeful it will last until she is an adult.  I'm so happy about this!  This Friday we go back to meet with the surgeons nurse practitioner and probably him, and to have another chest X-ray.  So let's hope her chest still looks good.

Rescheduled

Ugh... So I have been waiting since we met with the surgeon for the paperwork.  Well I have never recieved it so I called the office last week and asked them to send it, they said it was going in the mail.  Well by yesterday I still hadn't received any paperwork for her surgery that was to be Thursday, so I called.  Well little did I know they hadn't sent the paperwork because they were thinking about rescheduling her surgery (uh hello when we're you gonna tell me?).  Anyways I truly do understand and I'm not mad but geeze.  In all honesty it could be rescheduled without an issue if it wasn't for my mom and sister!  See my mom has already worked out her school schedule and work schedule and my sister had worked out her soccer and school schedules.  My sister was gonna be the one to watch Kaidence during the Pre op testing and during the surgery, well now I have to find someone that can do both of those.

Besides that I figure everything else doesn't matter too much, I understand.  Four years ago we had no idea that this child who took 2 days to get here would need surgery when she was four days old so I understand.  Lainey is healthy and able to wait unlike some babies who need emergent care.  So here is to hoping it doesn't get rescheduled once again!  And I truly do believe that everything happens for a reason.  

Now just to figure out who will watch Kaidence all day Tuesday and Wednesday next week and any time that Alex wants to come to the hospital!  Ugh...  But good news is we get to go to lily's birthday party and I get more days to clean my house since I really don't feel like doing it today!

And lets hope that Lainey can still trick or treat because her and Kaidence are being dinosaurs!  

Happy happy birthday!

So today Lainey turns 4 years old!  I can't believe how fast these four years have flown by!  Four years ago at this time I was probably being told that after 30 some hours of labor and pushing I would have to have a c-section.  Ah probably not at this time I think at this time I was still pushing, but our beautiful little girl was born at 2:46 pm, finally!  We were so disappointed that I had to have a c-section but we knew it was a possibility.  After she was here nothing mattered but that she was here and healthy, or so we thought!

After getting to hold Lainey for a little bit and share her with our family they took her and Alex to get her bath and check her and what not.  Well I got moved down to my room and my mom and Beth and whoever else were just hanging out and I realized where is Alex and Lainey? They had been gone for so long.  Beth ended up calling Alex and he said he had no idea what was going on but Lainey started turning blue.  He didn't know what was going on basically because they had no idea as well.  So they put her in an oxygen helmet and well there she stayed.

Since I had a c-section I couldn't go anywhere for awhile, I'm not really sure what all went on in this time I was so out of it.  Anyways finally at like 6 or later I'm not sure, they decided they were gonna take her to children's since they were unsure of what was wrong.  I'm not sure why there... Oh yeah I remember why there was a delay.  So since I had a high temperature when she was born and she breathed in meconium she was seen by a neo natal pediatrician.  He did not hear her heart murmur or think anything was wrong.  So anyways he was on his way out of state when they finally reached him.  He came all the way back and apologized and explained why he may not have heard the murmur, blah blah.

So later that night Alex and my families all went to children's while we stayed at Christ.  They called us with the doctor to explain what was wrong with Lainey, she has a rare congenital heart defect called Truncus Arteriosis.  Of course they explained everything and we cried and so the next day I had to beg to be able to go visit my daughter at children's, but then had to leave her and go back to my hospital room while Alex stayed with her.  Finally I was able to go home but instead I went to children's hospital and stayed for the next two weeks.

For the next few days I stayed with Lainey never leaving.  Finally on October 1, 2008, at 4 days old, she had her first open heart surgery.  Everything turned out great after one rough night after surgery.  Finally on October 13, 2008 we brought our baby girl home!  Now 4 years later in two weeks we will be doing it all over again.

We met with her life saver, her surgeon, Dr. Manning last Friday.  Basically everything is as we expected she will have surgery two weeks from today.  The surgery will be about the same amount of time but recovery should be shorter.  I am hoping for only the best and extremely anxious.  I'm trying to not show my fear because I don't want Lainey to worry but let's be honest I'm terrified.  I'm so anxious of how recovery will be with an active 4 year old but I'm sure we will deal.  Let's hope Kaidence is like a dog and can sense when Lainey doesn't feel well after surgery lol!

So in two weeks we get to ride this roller coaster again.  I said from the beginning although I was upset my high risk ultrasounds missed this defect (actually they saw it and it was ignored) I was so happy they did.  I'm glad I got to think everything would be fine and not worry for 20 weeks wondering if my baby would be fine.  So now not only do we know and sort of know what to expect we have to explain everything to our terrified four year old.  She is so smart and gets a bunch of it but the pain and all that I'm hoping she will just not remember.

And so now what...

So after a week of waiting I called the cardiothoracic scheduler. She was glad I called and said she could schedule all of the appointments. This took me by surprise, since I thought we would just be scheduling to meet with Dr. Manning, the surgeon.

So anyways we will be meeting with the surgeon September 21st, and surgery will be October 11th. Ahhh... I wasn't thinking, well really I didn't get much of a choice, but Lily (Lainey's best friend) is having her birthday party the 13th poop! And that weekend is my brother and sisters homecoming! And that next Saturday is Lainey's last soccer game and where she gets her trophy :(
Oh well I'm sure no matter when it was there would be some issue!

So four years ago on October 13th (the day before Alex's birthday) we finally got to bring our baby girl home. This year (3 days before Alex's birthday) our baby girl will be going into the hospital.

So until then Lainey has soccer every Tuesday night, and she starts school next Monday, and will have school every Monday and Tuesday.

MRI

Well the anesthesia team finally called today, and Lainey does have to have cardiac anesthesia. Well that doctor only does cardiac anesthesia on Tuesday's and is booked next Tuesday so we go Tuesday August 21st at 1:30. Tuesday's are also the days that the cardiologist and surgeons meet so that means they most likely won't discuss her case until the following Tuesday. Ugh...

Her cardiologist said that surgery could be as soon as 2 weeks from when they have the meeting with her case, so most likely she won't have surgery until September. This means my mom will be back in school and Lainey won't be able to start school or soccer when everyone else does. Tyler will also be leaving for boot camp and heck Beth and Phil will be getting ready for Germany!

I may just see if having the surgery in October would be a better option. At least then Lainey can start school with everyone else. We will see!

I might call the cardiologist and see if maybe they can still discuss her case before the MRI and maybe schedule surgery right after the MRI, but I doubt that will work. I'm trying not to stress too much and honestly if I didn't have Kaidence I would be fine! I'm just worried about who will keep her an entire week or more.

Waiting...

So yesterday we were suppose to find out if Lainey was indeed going to have surgery or not.  Well instead on Monday I received a phone call from her cardiologist, Dr. Kimball.  He said that we needed to get an MRI before they could discuss Lainey's case.  So we then received a call from the scheduling department to schedule the MRI, they asked us if she was able to lay still for 2 hours! uh no!  Anyways the cardiologist knew this and said she would be getting general anesthesia.  Anyways somewhere something went wrong in that they have to figure out what anesthesia she will be getting.  So we are waiting on that decision so that the anesthesiologist can call us to schedule the MRI.  

So I'm mostly upset because Lainey did so good at the Cardiologist last Tuesday and now she has to go back.  She also has to get general anesthesia AGAIN, so twice in two weeks.  I'm also upset because we were hoping to have surgery in the next couple weeks, so that we can get it done and over with so Lainey can start school and soccer on time!

Anyways here's to hoping we get some information soon so we can get the MRI and they can discuss her case this coming Tuesday!