Surgery #2

Happy Wednsday All! 

I held off on posting this week bcause I wasnt sure if Riley would end up having the surgery today after she caught a cold.  Yet again, another fun filled week... 

Last week, we brought Riley home on Monday.  Chase came home from daycare that day with the stomach flu and we had a rough first night taking care of him.  Also, Riley started throwing up every 2 hours because of mucus in her stomach after the irritation of having her NJ tube put back in. 

Tuesday rolled around and Chase, Riley and I had a great day at home as I started to come down with a cold.  Wednesday brought the brunt of my head cold as well as Abigail to our house visiting from San Francisco.  Chase came home that night and the stomach flu came back with a fury.  I think Brian and I did more laundry last week than we ever want to remember.  Thursday and Friday were spent at home with Riley and Chase.  It was great getting a feel for how to handle both kids as well as Riley's meds, feeds, and oxygen.  

We were so lucky to be able to spend Easter together as a family.  Chase got an Easter basket from the Easter bunny complete with bubbles which of course we had to use that morning.  We all had a great time at church and then it was off to Auntie Mary's for Easter dinner with the Fraser clan.  Oh what a great day it was!

Riley and I returned to Boston on Monday and joined 10E again.  Everyone was so excited to see Riley and couldn't believe how big she had gotten in a week.  She weighed in at 4.080kg which translates to about 9 pounds!!!  Riley had come down with a cold on Sunday night and everyone was skeptical as to whether we would be able to do surgery.  Thankfully the cold did not affect her lungs at all and we got the go ahead last night.

Riley went in for surgery at around 10:30 this morning.  The nurse who we met in pre-op called her a boy and to make sure at no one else made that mistake again, she came over with a beautiful purple blanket for Riley made by someone for Project Linus (www.projectlinus.org).  Another nurse loves to coordinate outfits and also brought us a little purple hat for her as well.  She was definitely styling for surgery (Auntie Stephie would be proud).

During the surgery I went to go pump (I know, TMI) and I heard a knock at the door.  I let them know someone was in the room and they said "Mrs. Coombs?".  I opened the door to see our surgeon standing there after an hour into a 4-6 hour surgery.  After he started surgery, he found that Riley had a condition called pyloric stenosis.  It is a condition that happens in kids from 4 weeks to a few months old where the valve between the stomach and the small intestine has extra muscle mass around it causing it to go from an open valve to a mostly closed valve.  Food is unable to pass through and it leads to vomiting.  Figuring that this might be the root of Riley's issues, we decided to not do the nissen, and instead to fix the pyloric stenosis and see if that helps solve Riley's issues.  We also went ahead and continued with the plan to put the G-tube in to make it easier to give Riley meds and supplemental feedings.

Riley is back in the ICU now for the night and we should be able to go back to the floor by tomorrow.  We will update on her status tomorrow!

Our Boston Marathon

Outside of these walls, people are lining the streets to run The Boston Marathon today. Many have been training and preparing for this day for months and cannot wait to cross that finish line with the satisfaction that all of their hard work paid off.

Within these walls, we are running our own marathon. We have trained for this since October 19th. We have run up hills and had happy moments with every mile marker we have passed. Today, for us, is our water break during our run. You know when you think you cant run any longer and the quick drink of water you get puts you back in the mindset of moving towards the finish line? Thats what we get today. The Dr. has given us permission to take Riley home for the week before her surgery!

For those of you who have been following this blog, you know why the analogy above makes sense. Riley went for a study last week to make sure her esophagus and stomach were connected properly and to test for refluxing. She did well. All connections are good. The one thing that did happen after the study is that she threw up the barium contrast they used...6 hours later. Basically Riley's stomach is not emptying out and she is spitting up anything that goes into it. She is now definitely having the Nissen surgery and it has been moved up to the 27th.

When we received the news, I asked the doctor if there was any chance of bringing her home the week before surgery. Long story short, babies in Rileys condition are generally not sent home at this point. There is a small group of parents that they trust to handle this release, and we are one of them! It really makes me feel like living out here for 11 weeks now (8 of them with Riley) has been truly worth every minute!

Even though it is only for a week, we get to bring our little girl home and get the "water break" that we need before running the rest of our marathon!

We hope you all have a wonderful week!

Sandy, Brian, Chase and Riley

Sent from my iPhone

Progress and Fun

Hi All,

I cannot believe that it has been 7 weeks since Riley was born, nor can I believe that  its been almost 10 weeks since I "moved" out to Boston.  Holy Cow!  We had some interesting things happen in the last week so here it goes:


Riley had a very rough start to the week.  She was just not herself and would fuss and cry at the drop of a hat.  She was refluxing pretty bad so she was given Xantac to take away the burn of the acid and erythromycin to help keep her digestive system moving feeds through at a quicker rate.  Additionally, Riley was weaned off the last of her Ativan at the beginning of last week and was also going through withdrawal at the same time as her refluxing.  She was given a "rescue dose" of the Ativan and after all the meds kicked in, she was back to her old self.

Grandma Trask, Uncle Jon, Uncle Rob, and Auntie Dijana stopped by to visit on Tuesday and we all had a nice dinner at Au Bon Pain.  Uncle Jon loved his veggie burger with guacamole and feta (he actually wanted a hamburger with cheese and mayo).

We had a very lazy day on Wednesday and slept in in the morning.  I brought Riley into my chair bed and we snuggled till 9!  It was totally sweet!

Later on that day we did some tummy time on the boppy pillow and Riley did so well picking her head up.  It is so exciting to see the normal movement stages happening with her.

Thursday rolled around and we went back downstairs for another swallow study.  We had success!  Riley was able to take the thickened milk without aspirating!  She still aspirates on the regular milk, but we will take what we can get. 

Friday was a big day around here.  It was the home opener for the Red Sox.  Riley got her picture taken with a baseball bat signed by the team (sorry grandmas and grandpas).  Don't worry, we will teach her all about the proper team to root for as she grows up, The Yankees (I'm sure we just lost alot of blog readers after that statement).  One of the players donated money to the hospital for all 5 inpatient floors to have a party including nachos, pigs in a blanket, soft pretzels, and lots of ice cream.  What an awesome gesture!

On a side note, what is more awkward than being alone in an elevator with two grown men dressed as clowns?  Being alone in an elevator with two grown men dressed as clowns that whip out a mini guitar and start singing a love song (Happy Together) to you.  Oh yes, very awkward.  I love the clown care for the kids, but I have to admit I was pretty weirded out by the whole thing.

Chase and Brian headed in as well on Friday and we spent the afternoon and evening at the hospital.  Chase learned to say elevator and showed of his new skills to everyone.  We had a great weekend to follow and got in lots of play time with the kids that we miss during the week (Brian & Riley and Me & Chase).  Chase and I even found a park during our walk.  He really enjoyed the swings but the moment I took out the camera, he was all done.

Daddy and Chase left yesterday, and Riley and I got some use out of the bouncy chair they brought out for us.  I think she enjoyed it...

In this new week, we will be working to figure out if Riley will need the Nissen surgery (scheduled for may 2nd) by feeding her more by mouth and seeing if she can keep it down.  Cross your fingers for good results!!

Have a great week!

So Happy

We have had such a great weekend already. Walk this morning around Boston and I have been able to see Chase and Brian has been able to see Riley. Can you tell Riley was excited?

Mr. Riley

Good morning!

We have a couple new updates so here it goes:

Riley is apparently a boy in everyones eyes (a true tomboy already). When we were in the ICU some of the doctors who weren't familiar with her would call her "him" just based on her first name. Yesterday was an especially big day for this as it happened three different times. The best time was when we went to radiology (dressed in a bright yellow sun outfit) and the doctor came in and said "well good afternoon Mr. Riley" in a gruff voice. The nurses quickly corrected him and he came over, stroked her head and said "well hello princess." I hope she doesn't get used to this perk of being a girl ;o)

Riley's NJ tube migrated back into her stomach yesterday which explains why she got sick for the first time in a while. It looks like she is still refluxing and throwing up when she gets food in her stomach. The doctor gave us a couple options for her going forward regarding feeding.

1. We can have her go through another surgery called a nissen fundoplication to stop the refluxing and send Riley home soon with a G tube.

2. We can hold out a couple weeks and try to feed her when they let us do another swallow study to see if we can get some food in her the normal feeding way (via bottle) and have her keep it down. This would give her a chance to grow and mature and possibly avoid surgery. With his option, there is still the chance that she will need the nissen but at least she will be a bit bigger (a few weeks older) when they go to do it.

We have opted for option 2 to see if she will start to feed on her own. We know this will take more time, but if there is a chance to avoid another surgery, we will take it. If she does need the surgery anyways, we will end up back in the ICU for a few days afterwards. At least we will be able to see all of our old friends!

More good news that our neighbor in the ICU (Max) was discharged this week. Max was born two days before Riley (for a completely different condition) but the two were on the same road to recovery for a while. Friends we have made like his parents and grandparents are the type of people who help us to make it through this in good spirits.

We hope you are all having a great week!

Sandy and Riley

Sent from my iPad