Conor's Heart - Part 5

We were so excited to have Conor moved to a regular room, partly because it meant his siblings could come and visit him. They had been pretty disappointed that he finally got here after months of waiting only to disappear again. Every time we would go home from being with him Finn would say "Tonor? Where Tonor?". They were very excited to come see him. 

                                 

And thank heavens Granny was here to take care of Teresa, Nora, and Finn so we could spend so much time at the hospital with Conor! 

                                                

Once he got to his room they were able to remove most of his wires and tubes. I was cringing a little bit for him when they took out his arterial lines, not only were they stuck in like the IV's but they'd also attached them to him with several little stitches to keep them in place. He also screamed like crazy when they pulled the drainage tube out of his chest, poor lad. By Sunday he was down to just having the feeding tube, one IV line, and a blood pressure monitor on him at all times. At that point we were able to hold him whenever we wanted and it was easy enough to get him out of his bed without needing help from a nurse. He definitely seemed a lot more comfortable once so many of the wires were gone!

Monday morning we were able to meet with all his doctors to discuss how he was doing and the game plan going forward. They were all amazed with how quickly he was recovering and said that basically he just needed to show us that he could eat by mouth and he would be ready to go home. He did a really great job getting back to nursing right away. His doctor felt like his few days at home getting to practice nursing was a huge help in making his transition easier. He did really well all day Monday but then in the evening he had two major spit up episodes. Because of those they decided to wait a bit longer on removing his feeding tube.  Luckily after that he did awesome all night Monday night, in fact he acted like any other newborn and pretty much just wanted me to hold him and nurse him all night. Tuesday morning they took his feeding tube out and we got to see his sweet baby face again.

You can see that large spot on his little wrist was where one of the arterial lines was placed. 

And then before we knew it the nurses were coming in with paper work for us to sign and telling us we could take him home!

The Christmas Post

We took so many fewer pictures this year than we usually do, but I had to at least get my all-the-kids-piled-in-a-chair picture! They love it.

This was Christmas morning.

We attempted to get some pictures before church in all their Christmas Sunday best.

 

Of course the three older kids were super excited about Santa this year. Finn was so cute, he was so excited about any Christmas decorations we drove past. He would excitedly point out a Santa or snowman or whatever and make sure that every one in the car had seen it. We spent several nights driving around seeing Christmas decorations and it never got old.

Nora was pretty stoked about the stockings. 

This cute boys first Christmas. 

Finn is at such a sparkly age, he was so excited about every present he opened. He didn't want any help, so each one took a while and the whole time he would say "What is it Mama? What is it?"

We got T a camera this year and she was so shocked and excited when she opened it. We've all had many a picture taken of us since.

Finn was especially excited to go see Santa. All day he was talking about it,"I see Santa, I give Santa hugs and kisses". When we got there he got very shy, though not especially scared. He was barely able to whisper what he wanted to him and kind of froze when Santa offered to let him sit on his lap.

Just imagine a cute picture of my four kids with Santa, because I keep forgetting to load it to the computer! 

Phone pics

It's time again to get some of our phone pictures up here! 

Lots of pictures of this cute guy in our phone these days.

Santa brought a big ol' box of play dough to our house and it has been so fun seeing the kids play together with it. 

This cute boy was sitting so sweetly watching the dolphins at the aquarium. That sweatshirt definitely dyed his skin green, as we saw later that night at bath time. He thought it was pretty cool.

When your mom forgets about your sheep costume until the day of, you get what you get. Nora was a cute little sheep and T was an inn keeper at the ward Christmas party nativity play.

Finn loves to hold his baby. Conor is getting used to it.

Who can resist a cute baby in a cute hat?

Cookie decorating!

Gingerbread houses! This is the first year we've built and decorated gingerbread houses with our little people. They loved it, but it was a ton of work! 

This is my view most of the time these days. It's pretty awesome, flaky cradle cap and all.

Kids and boxes. This one stuck around for a good two weeks to be played in. 

Found a bunch of Nora selfies on my phone.

The girls have a sticker book full of blank faces to decorate with stickers. T got creative with it one day. She silently sneaked up on me while I was organizing the fridge so I shut the door to see this standing next to me. Freaked me right out with that face. Nora had to get in on the fun too, of course.

Nora made us laugh one night when we found her sleeping with a sleep mask. 

Nora has been waiting and waiting for Finn to start sleeping in a big bed so they could have a sleep over. They shocked us by going right to sleep and we thought they looked so sweet with their little heads together when we checked on them later. 

So pleased with her block tower waiting at the dentist. 

This boy is the cutest. Shark Finn eating his shark sucker from the aquarium. We went in the gift shop and that was the only thing that caught his eye. He's an easy man to please.

Not where we put him to bed a few hours earlier...

Conor's Heart - Part 4

The plan for Conor's heart surgery was to do a left subclavian flap repair. They would take an artery running to his left arm and bring it down to widen his aorta. One doctor described it by telling us to think of the aorta and the artery as tubes and that they would basically be flaying them both open and attaching them together to make one tube out of the two of them. Below is one of the pictures we were shown. 

Supposedly this should have no noticeable effect on his left arm, besides not being able to have his pulse or blood pressure accurately measured from that arm. Possibly his left arm will be marginally shorter, though it shouldn't cause him any problems. He told us that as far as heart defects go this was one of the most easily fixable, and that he'd done this surgery so many times that he stopped counting. As horrifying as it was to be told that our baby needed heart surgery it was very reassuring to know how competent and experienced the doctor performing it was. While the surgery would take about three hours in total he said his part of it would only take between eight and thirty minutes. We were told that once he was out of surgery we would be waiting to call it a success until he woke up and was able to cry and move his legs and feet. There is a vocal nerve that runs right where the surgery was being done and it is not uncommon for it to be damaged as it is only about the size of a hair. And paralysis was another risk associated with the surgery, due to the fact that his extremities would be getting basically no blood flow during the surgery.

Conor was taken back for surgery around three thirty and it was shortly before seven that the doctor came out to tell us that "it couldn't have gone more perfectly". It was such a relief to hear those words!

It was another half hour or so before he was settled in the Pediatric ICU and we were taken back to this sight:

So many wires coming out of our boy! They placed two arterial lines along with all his IV lines, one in his neck and one in his right wrist, and he was still intubated and asleep from the anesthesia. I was glad to see how completely relaxed his little face looked. Even when he was sleeping in the ER or NICU before his surgery his little face still looked quite distressed, furrowed brow, etc. It was nice to see that he was completely pain and discomfort free for a little while. His nurse told us that she always advised parents to go home for the first night, since it would be hours before he woke up and we weren't going to be able to hold him anyway. With babies as young as Conor we were told it wasn't unusual for them to even take a few days to wake up from the anesthesia, which was kind of a scary thought. She promised to call us when he woke up so we went home for the night to try to get some rest.

He ended up waking up at about one in the morning, and she did not call us after all, which was probably for the best because we were finally getting some sleep for the first time in what felt like days. The next morning we hurried back up to Baltimore and were so excited to see this awake boy. He was able to both cry and move his legs shortly after he woke up and was back to breathing on his own! He's pretty swollen in this picture from all the fluids they'd been pumping in to him. 

We tried spending the following night in his room but quickly learned why his first nurse had suggested we not. They kept his bright room lights on all night and the nurse came in every twenty minutes or so to monitor him and do whatever other nurse-ly stuff she had to do. I was pleased he was being monitored so closely and taken care of so well but it made any attempts at sleeping there pretty much impossible. 

Finally, finally on Friday we got to hold him again. We hadn't gotten to do that since Tuesday when we took him to the ER. He still had so much stuff attached to him, it seemed like it was actually a bit uncomfortable for him, so we both snuggled him as best we could for a few minutes and then put him back in his bed. He also finally started getting some breastmilk in to his tummy through a feeding tube. I had felt so badly for him not getting to eat for so long. The nurses kept reassuring us that he was getting his nutritional needs met through the fluids going in his IV, but I knew that those fluids weren't doing anything for his poor, hungry little tummy. 

Saturday we were excited to hear that he was ready to move out of the PICU and into a regular room for the rest of his stay! We had originally thought it would be closer to Monday before he got out of the PICU so it was fantastic news that he was ready to move so soon.