The Surgery

 

The morning of the big day!

Della's surgery was on Tuesday, March 20th.  I know it took a while to get this post together but I've been so tired and busy just trying to keep up with everything that it sort of got put on the back burner.   


We went in Tuesday around noon and were quickly called back and ushered through pre-op.  It was really so fast that I didn't have time to get overly worried. She was such a trooper and while she was obviously overwhelmed she didn't panic and she let them do all the things the needed to do.  We were asked a million questions (though in all honesty it wasn't really a million different questions, just 10 questions asked 100,000 times), Della was changed into a gown, and was given "Happy Juice" to make her relax.  It was really kind of funny, like she was a bit drunk.  Then the anesthesiologist carried her away and we went to the PICU to wait. It's one of the hardest things to do, let someone carry away your baby knowing there's a chance, no matter how small, that you won't get them back.

  

Della just before they took her back to the OR.

  

The sign on her bed in pre-op, they moved it to her door in PICU after the surgery.

At around 1:30 they called to let us know they had made the incision.  Because the surgery wasn't anticipated to take that long they said they wouldn't be calling back until after they were done.  At around 2:30 the surgeon called to let us know that they were done and that everything had gone well.  He said that it was so tight that everything sprung apart when he cut the ligamentum arteriosum.  He is confident that she will have a great recovery with no long term effects from the defect.  He told us they'd bring her up to PICU in about 30 minutes where we'd get to see her and give her a kiss before she was again taken away to be situated in her room.  We were told this would take 30-45 minutes so we were rather concerned after an hour but we were soon let back to see her.  

  

 

Della 2 hours post-op.

I thought I'd be prepared to see her like that but I don't think you ever really can be.  She looked so tiny on that bed.  She looked so sick and weak.  She had so many tubes and things attached to her, it was heartbreaking.  They had told us prior to the surgery that 75% of the time the babies come out of the OR extubated, but Della had had so much stridor during the surgery that they decided to leave her intubated and the ventilator on.  It was so weird watching the rise and fall of her chest in sync with a machine though it wasn't long before they turned from the ventilator doing the work to letting her do it.  They left her that way overnight and it was a long night of sedation, suctioning the tubes, more sedation and more suctioning just to keep her oxygen levels where they should be.  

  

Della 24 hours post-op.

In the morning they decided to extubate her and to remove the NG tube.  After that was done they were able to let her wake up some and they were able to untie her from the bed.  She was pretty sleepy and spent most of the second day napping.  She had lots of visitors in the afternoon and even got so excited to see her papa that she stood up and managed to rip the IV line out of her foot.  Fortunately they weren't using it for anything so she didn't have to have a new one put in.  

She was allowed to eat the second day and we gave her a pop-sickle.  At first she refused to eat it but then Daddy told her it was candy and she happily ate it up.  She then moved on to some macaroni and cheese and some juice and Gatorade.  She was kept on Morphine all day so the pain didn't seem to bother her a lot, though we could definitely tell when it was starting to wear off.  

The second night was easier for her and I went home around 11 to get some sleep and Daddy stayed with her.  The night went well with her sleeping most of the time and she was in good spirits and had eaten lots of breakfast when I got back around 7 the next morning.  She was getting irritated by all the remaining tubes (she only had the Jugular line in her neck, the probes monitoring her heart and the pulse ox monitor on her toe at this point).  She was trying to get out of the bed and was really mad every time  her nurse came in to check her temperature and blood pressure.  Or worse yet, to adjust the pulse ox line on her toe.  Of all the things she had on  her that poked and hurt she hated that the most.  The tiny thing on her toe that shines a light.  Who would have guessed?  

  

Getting ready to go home and eating some Teddy Grahams.

They removed the jugular line on the second day and we were told we could take her home if we felt comfortable.  Since she seemed to be doing so well and we live only 10 minutes away we decided to let her sleep in her own bed.  So just 48 hours after surgery Miss Della was out of the hospital and on her way home.  The biggest challenge in having her home has been keeping her pesky brother Liam (2 1/2 years old) from knocking her down or running into her!  But it's also been challenging convincing her that she just had major surgery and probably shouldn't be running amok through the house and climbing everything she sees.  Of course we aren't having a ton of luck with either of these things but we are doing our best.  

Today she is 4 days post op and we went to the zoo to see the new herd of elephants!  She did great but was clearly worn out and fell asleep as soon as we got in the car.  

Here are some pictures and also a cute video from when Della was drugged up!

 

A funny picture Aunt Heidi took of Della while she was drugged up on pain killers.

 

This was the night before surgery.  Daddy did her breathing treatments and then couldn't let her go just yet.  They snuggled and slept for about an hour this way. 

 

This is the incision.  The scar will always be there to remind us how precious she is and how much of a fighter.

The Day Before

Today was the "day before surgery".  I would have had no idea what to expect if it hadn't been for Renee's posts over at A Bakers Dozen.  We started out at 8:30 AM with an appointment with the Child Life Specialist to get a quick tour of the pre-op area as well as the Pediatric Intensive Care Unit (PICU) where Della will be staying during her stay.  (Apparently, they put all the heart patients there regardless of whether they are critical, that way they are all together in one spot).  We then went home for lunch and a nap and then we returned to the hospital for her pre-anesthesia appointment.  We were asked a lot of questions about her medical history and were given the run down on when she could have food and drinks.  Then they told us they would need a urine sample, blood work and a chest X-ray.  We definitely were not aware that any of that was going to happen but I guess it didn't come as a huge surprise. 

Della was a trooper all day except when they wanted to take blood.  I'm sure she was remembering the appointment on the day of her CT Scan when they poked her 5 times to get an IV in!  She is definitely losing her trust of doctors, nurses, and anyone else wearing scrubs within a mile of her. 

By the end of the day she was tired and cranky.  We really can't blame her.  Tomorrow is the "Big Day" and we are anxiously waiting for it to be over.  We originally thought she'd be going in for surgery at noon but they apparently decided to move it back to 3.  Wish us luck in keeping her semi happy while eating only clear liquids the entire day!  I'll try to update Facebook tomorrow as I can and I will attempt to at least post a quick update on here tomorrow night. 

Some news that is better than most!

So when dealing with a congenital heart defect you have to keep things in perspective.  So while this is really good news for us...it's not like they said "We were all wrong! Your baby girl has nothing wrong with her!"  But they did say "your baby girl does not have a double aortic arch, she only has a right arch with an aberrant left subclavian artery".  Which, when it comes down to it, is the best situation we could have hoped for.  If you'll remember from the older post it just means they will have to cut the ligamentum arteriosum.  But this is easier to fix than a double aortic arch, and it is less risky of a surgery.

We haven't been to see the cardiologist again, so we don't have a lot of details.  Her surgeon has also not seen the results of the CT scan (CTA scan...it had contrast) so we will all sit down with the surgeons, the cardiologist and discuss exactly what we will be doing with the surgery.  There is still a small chance that we will be going in through the front of the chest and they will be fixing her ASD.  We just don't know at this point and we will be talking with the surgeon about our options with that.

The poor baby girl was such a trooper this morning and despite it taking them 5 tries in getting an IV line in for TWO HOURS and despite not getting to eat anything until after noon she was in good spirits tonight.  She was breaking all the RN's hearts by crying "Why?!" in her saddest voice every time they poked her. She did so well and we are so proud of her!

Pre-anesthesia Appointment

We were supposed to have a pre-anesthesia appointment yesterday but it turns out it was canceled.  They just forgot to tell us.  But it's ok because they have decided that instead of doing a general anesthetic they will just sedate her.  This is a good thing, I'm told, because it will take her less time to come out of it and be able to leave after the CT. 

Tomorrow at 9 AM we will *hopefully* be finding out exactly what is wrong with our tiny girls heart.  We are so nervous but we will be glad to finally know what will need to be done to make her well. I will update as soon as we know anything.

Also, Apollo is having his surgery today.  Please keep him in your thoughts.  You can follow his updates here. 

Just to make it more interesting here is a cute picture of Della at the zoo last weekend!