Patience

Patience is a virtue, they say.
But what they really mean is patience is a necessity.

We are still in the hospital. Waiting. All day we wait.

We've done this before.
Last time we waited it was for Miss Nora to eat.

Today Nora eats.
She eats just fine. Not as well as at home, but that's not unexpected given the pain medication, the environment, the surgery, the tube draining fluids from her chest. It's all fine that she isn't eating quite up to par. She still eats.

Might as well look pretty while we wait!

This time we wait for the tube.
Nora is somewhat of a champion of surgical complications.
Currently, we deal with one called an "air leak." Quite literally that means the lung they cut apart is leaking air from the suture site. That air is finding it's way into her chest cavity. The tube in her chest is sucking the air out and down into this little box that hangs from her bed. There we watch the air enter the fluid in the box and create little bubbles that float to the top. All day long we watch these bubbles. Sometimes we think the bubbles have decreased! Sometimes we think the bubbles have increased. It doesn't really matter, as long as there are any bubbles at all, the tube remains.

Dress up sure makes waiting more fun!

I'm sure you can imagine why this is. If we were to remove the chest tube before the air leak were gone we would run the risk of allowing the air bubbles to simply rest in her chest, causing obvious discomfort, pain, and trips back to the hospital. So, we wait.

Last time we waited I was recovering from child birth. Kevin was taking care of me. Our baby was happy to sleep all day and all night. This just isn't the case anymore.

A six month old confined to one room, tubes, wires, oxygen all day- or all week isn't super easy. We can't really leave her bedside, unless of course it's to the rocking chair to sit up for a bit, take a nap together, read a book, etc. While we used to leave her to rest while we went to get dinner, went to run some errands, went to simply get outside, we no longer can. Not unless we want Nora to eat her oxygen tube, pull off her leeds, tug at the chest tube and generally cause a ruckus.

success after a long battle of getting baby girl to sleep!

Don't get me wrong, there is nothing I love more than watching Nora fight back. This girl has got spunk, and she is showing it now more than ever before. She refuses oxygen at times. She won't stand for any toy except her pulse-ox, and she adores refusing her meds and/or spitting them out. She won't even let the doctors listen to her heart without a fight. It's sort of hilarious and so cute. But by the end of the day, it can be exhausting and frustrating. We are all a little bit restless.

Our first venture out in the little red wagon. So fun!

So, each evening we've taken to a wagon ride. We pack up the oxygen, the chest tube, blankets and toys and venture out of the CPCU for a little trip. Nora always smiles. We smile back. And when we return we all feel a little refreshed and ready to rest some more.

Wagon rides with Cousin Charlotte!

We have only been here 5 nights, and 6 days. They predicted a week. We are on track. Nora isn't in as much pain these days. She is happy. She is full of smiles. She still manages to roll all over her crib. Things aren't bad.

Things could be So. Much. Worse.

But we are still ready. Ready to be done. Ready to seal up that chest tube site. Ready to say goodbye to the hospital and hello to the swimming pool and the backyard swing and our beds, and sinks and puppies! We are so grateful for such a happy girl, tough girl, and healthy girl. I know it appears she isn't in great health. But it doesn't take more than a few minutes in this amazing hospital to see that Nora is a very, very lucky girl. Whenever we do go home we will leave behind so many children that have been here long before her and will be here long after. This breaks my heart. I feel for these families and these children. I wish with all of my soul that they were only waiting on an air leak. But for many they are waiting on a miracle, a transplant, a cure. I have no way to help these families and children and no way to make it better. All I can do it be grateful for Miss Nora and the cards we've been dealt and the smiles we've been given.

And also, I can be patient. Patient with a smile on my face so everyone knows that we are O.K.

Tonight when you say a little prayer for Miss Nora, that she continues to heal, continues to smile, continues to beat the odds and show her spunk, please say a prayer for everyone we will leave behind at the hospital when our waiting period is over. It may be days, it may be weeks, but in the end we will leave others here to wait. Please pray their waiting ends soon, and in a positive light.

Thank you for all of your support!

See ya never, 3024.

Well folks, we survived a long lobectomy procedure yesterday.

They were a bit behind in scheduling so we had some extra fun with our baby girl before they took her back to the operating room.

Surgery was loooooonnnnnnggggg, but uneventful. They struggled to intubate her, but then they were able to continue with surgery thoroscopically. They removed the upper lobe of her lung and could tell it was certainly abnormal tissue, but still can't tell us exactly what it was. We will get pathology reports early in the week.

Now, we all know the true beast of this animal is recovery.
Nora started that journey in room 3024. That's the same room she recovered in from heart surgery. It's our little comfort zone, and place of horror right in the middle of the Cardiac Intensive Care Unit. Upon entering the room it felt a little bit too much like we had never left. We knew the nurses and doctors, we knew the bed and storage locations, we knew exactly how to get there and where everything was from there. But also that felt really nice.

But what felt especially nice was to see her after surgery breathing on her own.

She doesn't have a gazillion medications. She isn't struggling to breathe. Her lungs sound a bit wonky, but she is breathing well. She is a bit hoarse, but nothing like she was with a paralyzed vocal cord post heart surgery. We were able to hold her about 1am last night and it was such a relief.

Even more so, we are glad to say goodbye to Room 3024. We have been given CPCU status and are officially out of the the Intensive Care Unit.

That must mean she is doing better, right?

Sort of.

Medically, Nora is recovering as expected. Her heart is handling the operation wonderfully.
But she is very uncomfortable. The pain from surgery and the drainage tube in her chest is fierce. She is constipated and unable to keep feeds or meds down (but she had been eating! So that's a great big WIN!).

We are exhausted.
Before this surgery I was so ready to just get it done. I wanted it behind us.
And I'm sure when the pain subsides and we are finally home again I'll be glad to be on the other side of this event.

Right now, however, we aren't in front of it or behind it, we are in the middle of it. And it's really hard. Nora is scared and uncomfortable and attempting to be mobile through it. It's hard to manage. it's hard to watch, and it's just darn right exhausting.

Please say a little prayer for relief for our darling Nora. She has definitely reached super human status and we are so very proud. But even the superest of humans need a little love and support every once in a while- her time is now.

Thank you for all of your prayers and support up to this point!
Love to you all!