Post Surgery

Since Cora was released on Sunday, I had two days to spend with mom before she went back home. I was glad for those two days because I didn't see much of her at all since she was with Kimball and I was with Cora the whole time. On Monday we went to the River Park Square and did some shopping. We had lunch at the park across the street where Kimball did the usual - rode the carousel, played on the huge radio flyer slide, visited the geese, fed the garbage goat, climbed the blocks, and ran through the fountain. We spent all day at the Square.

Cora did exceptionally well besides one little episode of discomfort. She obviously needed venting and it took me a while to get her calmed down but other than that she did great!

Cora had physical therapy on Wednesday morning which went wonderfully as well. Thursday when speech came, the nutritionist also came. So Jan, Jordan, and I all worked together to tweak Cora's new diet. We started bolus feeds and oral feeds with the bottle. At first we started with 2 ounces but about 20 minutes into that Cora was not tolerating it well so we took it out and adjusted her feeds to 1 oz. Her whole feeding schedule is very confusing, overwhelming, and a bit annoying. The day time feeds are different than night time feeds both in the recipe/concentration of the formula and also the rate and dose that she gets at her feeds. Some are oral, some are pumped into the G tube. It's confusing, thank goodness Jordan wrote it all down!

But, by the second oral feed of the day Cora was not tolerating the 1 ounce bottle well. I didn't know what to do. Was it the bottle, the volume, the concentration, the pain, or the teething?!?! Of course this happened after business hours when I couldn't contact the right people but thankfully Jan is wonderful and lets me bug her as needed. She suggested I just go back to what she was tolerating and call Jordan and the doctors in the morning. I changed her feeds back to the normal 20 calories every 24 hours at a rate of 35 ml.

This morning I called Jordan to see what I should do and she suggested that we get her weight back up to where it needs to be and up to a full feed with full fortified calories and then work in bolus and oral feeds. Good plan! Today we bumped her up to 22 calories and so far she's good.

Getting her stomach back to where it was is going to be a much longer and harder process than I expected. I know the fundoplication made her stomach a bit smaller and it also shrank because of not eating anything (because of the NJ tube and because of the hospital stay) but I thought she would've been able to tolerate the one ounce just fine. But that's ok, one thing I've learned is that Cora is on her own growth/time table and I work around her needs. I think her little tummy just couldn't handle the volume so I'm glad Jordan tweaked her diet to allow for calorie build up first before we introduce bolus and oral feeds.

One thing that will be hard for me to adjust to, is her schedule. For example, if Kimball  and her are ready for a nap at noon, I'll just feed them at 11:30 and put them both down. But Cora's schedule is now very strict and not only do I have to get up but I have to wake her up as well to eat. I can work around no naps, but it doesn't make it convenient to go out in public at all. It's difficult to explain without knowing every detail of what she's eating and when, but it will most definitely be quite difficult to leave the house. Which will be hard. I am a homebody but every now and then I need to get out of the house for errands or other house stuff. And have girls night, especially girls night! But it sounds like those will be out of the question for a while. Boo!

Other than that, she's doing really great!!

Surgery Day 5

Day 5: Cora did great on the pedialyte and formula. When Dr. Chan checked in on us that morning he said she could even try a bottle but I was much too reluctant. I didn't want her to regress or damage the surgery sites or anything so I decided not to try any oral feeds at all. Much to my surprise, we went home Sunday night. I certainly wasn't expecting to go home that quick since the first three days were a little rough but Cora did great and tolerated the formula perfectly!

Saturday night during their visit, Lance and Kimball found the toys at the end of one of the hallways. Lance was riding the biggest tricycle I've ever seen, it was industrial size or something and it even said the capacity load was 600 lbs. I thought it was really funny and even had inflatable tires like on a car.

I stayed at the hospital every night and was there for most of the day. Some evenings I took an hour or two to get out of the hospital or spend time with Kimball. On days that I didn't go home we did facetime and he even chatted with his sister.

 

 I love this picture, that's the Watson gene right there!

Siblings

This is for people who think Kimball and Cora don't look alike. This is both of them at 6 months old. 

Speaking of which, Cora turned 6 months on the day of her surgery! I have so many mixed feelings about that, I don't want my babies to grow up. The past six months have crept by and flown by all at the same time. All of this medical chaos really throws a curve ball. Kimball stayed small until he started solid foods, then he hit a growth spurt and got some chub and length. Cora is still skinny, has not started solid foods for her obvious digestive issues, but is quite long.

Surgery Day 3 & 4

Day 3: While Lance and I were on our date the previous night, Cora pulled out the nose tube so the night shift nurses put it back in. That girl! I can't blame her though, I'd hate to have a nose tube! Because she pulled it out, the nurses had to put these braces on her arms so she can't bend her arms to get to her face or any of the cords and tubes. Look at her, what a strong girl still smiling through it all! So when the doctor made his rounds in the morning I was explaining to him what happened. He got a concerned look on his face and said the nurses shouldn't have done that, they should have called him immediately. Apparently they could've pushed the tube too far and poked a hole in one of the surgery sites. Dr. Chan immediately ordered an xray which showed the tube was indeed too far but no damage to the surgery site, thank goodness. The nurses pulled the tube out 8 centimeters and then did another xray to ensure it was in the proper place. Cora still did not have a poopy diaper so the doctor ordered her a glycerin suppository to get her bowels moving quicker.

It was a hard day for her. Arm braces = no thumb sucking. No thumb sucking = no self soothing. No self soothing = a grumpy baby. I had to hold Cora all day long, otherwise she just screamed and cried. A volunteer came by the room to see if she could help me so I let her hold Cora for a few hours while I went home to eat dinner, grab clean clothes, and spend a little time with Kimball, Mom, and Lance.

When I got back to the hospital Cora had pulled the tube out again and Dr. Chan said to leave it out and see how she does. She also had a poopy diaper when I was gone so that was a relief!

Day 4: Today. Look at this happy baby! Because she pulled the nose tube out again, they took the arm braces off of her so she had her hands back to suck on. She was thrilled! She's been so good today and Dr. Chan said she looked great and continued to do well off the nose tube so we get to start feeding today, hurray! They're starting slow at 5ml an hour of pedialyte and will gradually increase. This will be the first food she's had in her tummy in 2 weeks and since the surgery, so I'm excited and hoping it helps her recover a bit quicker. If she tolerates the pedialyte I can switch it out to formula  in a few hours so I'm anxious to get her digestive system back to normal. So far, today is looking great!

Surgery Day 1 & 2

Day 1: Cora was in surgery about 3 hours. I was finally called back to the recovery room and immediately broke down in tears. I was so grateful that it was over, that she was ok, and that the surgery went well! Her incision is about an inch which continued to have a little drainage throughout the day. Her G tube looked great, it is weird to see something like that stitched to your body inside and out. I wasn't expecting another nose tube but that and another one was for draining her stomach. Overall, everything went well.

This is Cora still sleepy and transferred to her room on floor 3.

When she woke up from the anesthesia she was pretty irritable and inconsolable. I cried. I didn't know what to do and was afraid to pick her up because I didn't want to hurt her little tummy. It was hard to see her in pain like that. So I rang for the nurse. I rang for him at least five times in ten minutes because I didn't know what to do. Her IV almost came out so they reinforced it with a board, taped it all, and then put a brace around it so she can't kick it all off. The IV was saved, thank goodness (the anesthesiologist had to poke her at least 10 times in the OR to finally get the one in her foot).

Around 7:30 Lance, Mom, and Kimball came to visit Cora in the hospital. We all stayed for about 30 minutes but were too starving so we all went to dinner at The Old Spaghetti Factory (also our anniversary night). Kimball actually took this picture.

Day 2: Cora had a rough time around 10:30am. I couldn't console her, wasn't sure if she was in pain, didn't know what to do. This time I held her and we rocked for a long time. She continued to have a few rough moments throughout the day, I'm assuming the pain meds were wearing off but I managed to get her to smile here and there.

 

A few months ago Lance got tickets to Wicked for our anniversary. He gave them to me as a gift last month when we out for a date when Donna was here. I was so excited! However, poor timing because there was no way for us to know that Cora would be in the hospital at the same time. We made it work though. Mom came to the hospital to be with Cora and a babysitter went to the house to be with Kimball. Lance and I were originally going to eat at a place called Clinkerdaggers right on the water but the wait time was too long and we wouldn't have made it to the show in time. So we ate at the Olive Garden instead. It was a rushed dinner but delicious and it was so great that it was just Lance and I. With him being gone for a whole week but all of this medical chaos, we definitely needed the time together. The show was fantastic! So good, I would go see it again in a heart beat. Happy nine years my lovey!!

Nine Years-We're Getting Old

Happy 9th anniversary to us! It's been a crazy year with a lot of big changes and lots of ups and downs. But we made it through together! We'll spend the day apart from each other as I'm in the hospital with Cora and Lance is at work/home with Kimball. Tomorrow we'll celebrate and go see Wicked!

Surgery

As I've been updating the blog, Cora is currently in surgery. The doctor said it'll take 2.5 hours, possibly longer because she's a complex girl with her heart and neuro issues as well. She'll be hospitalized for 4-5 days. Mom flew in this morning to help us out with Kimball. Blessings all around!

I'm not nervous or anxious at all, just so glad she'll finally be able to eat without pain and difficulties! I'm so thankful for the doctors and therapists who've been diligent and determined with her care. I'm just so overcome with gratitude and know that she's in good hands.

Cora's Journey Goes On

This is Cora during the gastric emptying study. I fed her like normal and then they laid her under this gamma camera for hours. She didn't make a peep, eventually went to sleep, and did so well! When they first put her in there she kept looking around trying to find her Mama. That melted my heart!

I went around to the side so she could see me and she just laid there and smiled. This test took hours.

We followed up with her GI doctor and received all of the test results. The liver and pancreas were great and functioning properly. The poop tests came back negative for blood and positive for inflammation, another indication that she's allergic to the rice cereal. The gastric emptying study showed that she's a slow emptier with a severe delay. I already knew that, I just didn't know how bad it was. She said a normal baby empties in about 60 minutes and Cora empties in 408 minutes. Halfway during the study they gave her a medicine called Erythromycin which she turned out to be allergic to as well. Here we are at the Dr. Z's office.

 We then discussed what we needed to do from there. I had three options, #1 is to treat the slow emptying with drugs, either Reglan or Erythromycin. The antibiotic is out because she's allergic and I don't want her on Reglan because of the neuro side affects it had and because she'll most likely be allergic to that as well. #2 is to inject botox in the lower muscle in the stomach, the bottom sphincter. This will relax the muscle and let the food leave the stomach easier and quicker. There's only a 50/50 change of it working and if it does work, it will only last 1-3 months so it's a temporary fix. #3 is to do surgery. The surgeon will do a fundoplication, pyloroplasty, and a G tube. They will tighten the muscle at the top of the stomach so she no longer refluxes, make an incision in the bottom muscle so the stomach empties quicker, and inserts a feeding tube called a Mic-Key Gastrostomy Tube. This feeding tube will come directly out of the stomach and is semi-permanent, she'll have it at least a year but more likely longer.

I opted for #3 because it's a permanent solution and the other two wouldn't work with her. To make sure she'd be a good candidate for the surgery she had to have a N.J. feeding tube for a week. It went into her nose, bypassed the stomach altogether, and went directly into her intestines. The doctor wanted to see how she did with it and also wanted both the therapist's opinions.

Don't let this angel face fool you! She was intent on not having that feeding tube. She constantly pulled it out! Every time she did, I had to go back to the hospital for radiology to put it back in. On Sunday, she pulled it out twice. The first time we didn't even make it home before she pulled it out so I had to go back to the ER.

None of this would be a huge deal but Lance was out of town for all of it. Luckily I have amazing visiting teachers and friends who stepped in, took Kimball every day all, brought in meals, delivered ice cream, etc. They are amazing! It was a very, VERY difficult week without Lance but we survived. Barely.

The funniest thing happened, as soon as she got the feeding tube, she became a thumb sucker. A darn cute one at that!

Random Pictures

I've been so behind on blogging because of doctor appointments for Cora. They seem endless the last few weeks! For the sake of time, here's a bunch of pictures taken over the last three weeks.

This is how Cora sleeps: on her Tucker Wedge & Sling

 

 

 This makes me laugh so hard! Kimball had mouth full of fruit snacks and that intense riding face? Priceless. He really got that airplane going.

Lance was gone all week long last week so I came up with a few activities to do with Kimball. This is "painting" in the bath tub with blue shaving cream tinted with food coloring. Next time I'm skipping the food coloring altogether.

 

 While Daddy was gone, we did facetime so Lance could tuck in Kimball. Here they're singing the popcorn song together.

Kimball and I also made this silky, stretchy play dough. And that's exactly it, super silky and soft but not quite as moldable as regular play dough. To make it you mix together: 2 cups cornstarch and 1 cup cheap conditioner. That's it.

Charity Never Faileth

"There is a serious need for the charity that gives attention to those who are unnoticed, hope to those who are discouraged, aid to those who are afflicted. True charity is love in action. The need for charity is everywhere."
- Thomas S. Monson

All Dressed Up!

Chilling At The Park

We love playgroup. I need to it to survive the week and so does Kimball. Lately it's been outside at various parks to take advantage of the spring weather and fresh air. Here is Cora with her other baby friends: Aria, Sydney, and Brittney. What a cute bunch all under the shade of the umbrella!