We would like to invite you all to come celebrate Riley's return home with us!
When: Saturday, June 18, 2011
Where: Our Home
647 Rogers Ave
West Springfield, MA 01089
Time: 2pm - ??
Food and drinks will be provided and we will have traditional BBQ fare.
Please RSVP if you can to sandra.c.coombs@gmail.com or 413-363-0564 so we are able to get a head count.
We hope to see you all there!
Sandy, Brian, Chase and Riley
Riley MRI
Riley's First Picture
Friday, May 20, 2011
Monday, May 16, 2011
The End and Also The Beginning
Hi All,
I should start by saying (for those who haven't heard) that we are all home! Riley came home for good on the 7th of May. Here is how our last week went:
Stacy and I continued our sign war and ended up getting very creative.
On Thursday I went to the Center for Families to use the printer to print out a new sign for Stacy's door. While I was down there, a woman who worked there came up and asked if I wanted to go to a Red Sox game. I was a little unsure at first, but she said the game was that day at 1:30 and I could have a few tickets. I accepted the offer and before I knew it Stacy and I were out of the hospital a couple hours later for a re-do of our mommy time. The biggest surprise of the day was yet to come. When we go there we found out that our seats were in the EMC Club. We entered through a restaurant above home plate and had the option of watching the game from the restaurant or from our front row seats. No sooner did we sit down at our seats outside than our waiter came over with menus. We had cushioned seats, heaters above us, a flat screen tv in front of us, private bathrooms and a great view of the game!
The nurses on that day were great and they even sent us pictures of the girls so we wouldn't worry:
Friday came around and it was time for Riley's ECHO. She did awesome! Her heart looked great after being weaned off the sildenafil (for pulmonary hypertension). Dr. Smithers came in to talk to us and asked us when we wanted to go home. It was about 6 at night at that point so we said we would love to go home tomorrow. He gave his blessing and Brian and I went out for a night out before we brought Riley home for good. We had such a great time together going out to eat at Boston Beer Works and then grabbing ice cream at Stone Cold Creamery.
The next morning we went back to the hospital and found Riley sleeping in on her big day!
We were so excited to head out. We got everything packed up and said our goodbye to the nurses and they left a note for us:
We loaded Riley in her car seat and she waved goodbye to all of the new friends we had made in the last 2.5 months. This has truly been such an eye opening experience for us. We would like to thank you all for praying and thinking of us. It has really meant the world. Our little girl is home now and in great shape! All feeds are eaten by mouth and I will be working to switch meds over to mouth as well in the hopes that we can take the tube out at our 1 month appointment. For those of you that haven't heard, I have left my job as VP of Blue Thunder Technologies, for the job of mommy to two perfect kids. I cant wait for the fun times ahead, and to see all of you. Please check back in the next week as I will be posting a date for a Welcome Home Riley party that I would like to invite EVERYONE to. Even if we have not met you before, your thoughts and prayers and support have helped to get us to where we are today!
I should start by saying (for those who haven't heard) that we are all home! Riley came home for good on the 7th of May. Here is how our last week went:
Stacy and I continued our sign war and ended up getting very creative.
On Thursday I went to the Center for Families to use the printer to print out a new sign for Stacy's door. While I was down there, a woman who worked there came up and asked if I wanted to go to a Red Sox game. I was a little unsure at first, but she said the game was that day at 1:30 and I could have a few tickets. I accepted the offer and before I knew it Stacy and I were out of the hospital a couple hours later for a re-do of our mommy time. The biggest surprise of the day was yet to come. When we go there we found out that our seats were in the EMC Club. We entered through a restaurant above home plate and had the option of watching the game from the restaurant or from our front row seats. No sooner did we sit down at our seats outside than our waiter came over with menus. We had cushioned seats, heaters above us, a flat screen tv in front of us, private bathrooms and a great view of the game!
The nurses on that day were great and they even sent us pictures of the girls so we wouldn't worry:
Friday came around and it was time for Riley's ECHO. She did awesome! Her heart looked great after being weaned off the sildenafil (for pulmonary hypertension). Dr. Smithers came in to talk to us and asked us when we wanted to go home. It was about 6 at night at that point so we said we would love to go home tomorrow. He gave his blessing and Brian and I went out for a night out before we brought Riley home for good. We had such a great time together going out to eat at Boston Beer Works and then grabbing ice cream at Stone Cold Creamery.
The next morning we went back to the hospital and found Riley sleeping in on her big day!
We were so excited to head out. We got everything packed up and said our goodbye to the nurses and they left a note for us:
We loaded Riley in her car seat and she waved goodbye to all of the new friends we had made in the last 2.5 months. This has truly been such an eye opening experience for us. We would like to thank you all for praying and thinking of us. It has really meant the world. Our little girl is home now and in great shape! All feeds are eaten by mouth and I will be working to switch meds over to mouth as well in the hopes that we can take the tube out at our 1 month appointment. For those of you that haven't heard, I have left my job as VP of Blue Thunder Technologies, for the job of mommy to two perfect kids. I cant wait for the fun times ahead, and to see all of you. Please check back in the next week as I will be posting a date for a Welcome Home Riley party that I would like to invite EVERYONE to. Even if we have not met you before, your thoughts and prayers and support have helped to get us to where we are today!
With Love,
Brian, Sandy, Chase and Riley
Wednesday, May 4, 2011
Mom of the Year
Good Morning,
I hope you all have had a great week; we sure have! Riley has been doing phenomenally since her surgery. She has taken milk via tube and by mouth and has kept her full feeds down. She actually ate a whole ounce by bottle yesterday during a feeding, and then was so tired, that she conked out!
This weekend was great as always. Its so awesome to have Chase and Brian out here to spend time with. Chase is definitely getting used to having Riley as a sister. Whenever anyone says "oh is that your sister?" he puffs out his chest and says "ya ya". He also goes down the family list now:
Chase: doggy?
Me: Maggie is playing outside.
Chase: dada?
Me: Daddy is sleeping.
Chase: Riley?
Me: Riley is sleeping too!
I cant even tell you how awesome the above conversation was to me!
We went for a swallow study yesterday to see if Riley could drink normal milk instead of thickened. She didn't aspirate, but came close, so she is still on thickened.
Our old roommate Avery and her mom Stacy went down to ultrasound yesterday and upon their return, Stacy let me know that the doctor that read the ultrasound had a belt buckle on that said "playboy" complete with the playboy bunny. Seriously? In a Children's Hospital? Well, of course, if you know me, this sparked a night of fun.
It all started when I told Stacy that I was going to put a Playboy Mansion sign on her door. Instead, I walk out of my room where a nurse asks me about my dance moves only to find out that she put a sign on my door saying "I am auditioning for So You Think You Can Dance. Ask me about my cool new dance moves!"
After having a great laugh (and being laughed at by everyone at the nurses station) I decided that we mommies needed a night on the town. I invited Stacy and after making sure we had good nurses for the kids last night, we decided to go down to a bar at Fenway while the game was going on. We joked around with a few nurses because they knew it was our first big night out of the hospital for some down time.
No sooner did we walk the mile, get to a bar, and order a beer, then Riley's nurse called. She had come in to calm Riley down when she was crying and found her soaked. The balloon in her G-tube that holds it in her stomach had burst, and the G-tube came out. The nurses were saying that they hadn't seen anything like it before. They had her stable and were holding a cat in her to keep the hole open and they would be taking her to radiology to check placement of the catheter. Well, we headed back and got to the hospital where Riley and I stayed up till 2 (not exactly the late night I was expecting). She now has a catheter instead of a G-tube that they can put feeds through, and hey are hoping to switch it back to a G-tube by discharge time. Go figure that the one night this happens, I then have to come in and explain to the Dr. on staff that mommy was out having a drink. Regardless of the fact that this was my first night out. Mom of the year material for sure!
Just as an FYI, Stacy now has a sign that says playboy mansion with a picture of a playboy bunny, and I have a new sign with a cartoon strip of a man covered in stubble illustrating different dance moves. The war is on! ;)
Have a great week!
Sent from my iPad
Wednesday, April 27, 2011
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!
Monday, April 18, 2011
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
Monday, April 11, 2011
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!
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!
Saturday, April 2, 2011
So Happy
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