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
Friday, April 1, 2011
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
Tuesday, March 29, 2011
Feeding Fun
Good Evening!
Hope you all had a great day! Riley was able to get out of the room today for a swallow study. She had been having trouble with her oral/bottle feedings and so the team wanted to make sure she wasn't aspirating any of the milk. As it turns out she was aspirating a small amount during feedings. They tried to give her thickened milk to see if that would help and it didn't. Unfortunately for kids like Riley, it is difficult for them to figure out how to coordinate the sucking, swallowing, and breathing to allow them to eat.
We will be giving her another week or two before trying to feed her orally again to give her time to grow and mature. Don't worry, she still gets her full feeds via her NJ tube.
On a very happy note, I had met a family in the MSICU whose son had been there since just after birth. He is now over 2 years old. They have received the happy news that they are being discharged Thursday to a local hospital in South Carolina. It was amazing to see the strength of this family where the mother lived here in the hospital, and dad lived in SC with their daughter for the past two years. I am so excited for them, and can't even imagine the joy they are feeling right now!
With this setback in feeding, we will obviously be here for several more weeks, but truly all that matters is that we will be bringing her home at some point. What can be better than that?
Hope you all had a great day! Riley was able to get out of the room today for a swallow study. She had been having trouble with her oral/bottle feedings and so the team wanted to make sure she wasn't aspirating any of the milk. As it turns out she was aspirating a small amount during feedings. They tried to give her thickened milk to see if that would help and it didn't. Unfortunately for kids like Riley, it is difficult for them to figure out how to coordinate the sucking, swallowing, and breathing to allow them to eat.
We will be giving her another week or two before trying to feed her orally again to give her time to grow and mature. Don't worry, she still gets her full feeds via her NJ tube.
On a very happy note, I had met a family in the MSICU whose son had been there since just after birth. He is now over 2 years old. They have received the happy news that they are being discharged Thursday to a local hospital in South Carolina. It was amazing to see the strength of this family where the mother lived here in the hospital, and dad lived in SC with their daughter for the past two years. I am so excited for them, and can't even imagine the joy they are feeling right now!
With this setback in feeding, we will obviously be here for several more weeks, but truly all that matters is that we will be bringing her home at some point. What can be better than that?
Monday, March 28, 2011
Switch Again
Well, Brian and I returned to our "normal" roles yesterday afternoon. Me with Riley and Brian with Chase. I had a wonderful time with the little man and I know Brian really enjoyed being out here with our little girl.
There are a few themes that have remained as we have posted here. One being that Riley has shocked and amazed us all with her resilience and strength. The 2nd being how wonderful our family and friends have been, and the third being how amazing of a man Brian is. This third one was truly emphasized to me upon my return this weekend. From moment one, the nurses raved about how awesome of a man and father Brian is. They went on to tell me how they dont get many fathers who stay at all, much less ones who are so comfortable being fathers (who do everything their kids need and more). They all said how wonderful it was to see Brian loving holding her and caring for her. As one nurse said: "you are so lucky." "Yes" I replied "I know."
In the wake of a terrible accident that has affected the Crum side of the family, I am reminded all the more to cherish the time and love I have for our family. Our thoughts and prayers are with them all through this difficult time.
On a happy note, Riley was so happy to see her mommy again yesterday that she smiled for the first time. Here are a couple pictures of our girl.
If there is one thing we all have learned through the past several weeks, it is to cherish and appreciate the time we have with the ones we love. Take a moment today to do so...
There are a few themes that have remained as we have posted here. One being that Riley has shocked and amazed us all with her resilience and strength. The 2nd being how wonderful our family and friends have been, and the third being how amazing of a man Brian is. This third one was truly emphasized to me upon my return this weekend. From moment one, the nurses raved about how awesome of a man and father Brian is. They went on to tell me how they dont get many fathers who stay at all, much less ones who are so comfortable being fathers (who do everything their kids need and more). They all said how wonderful it was to see Brian loving holding her and caring for her. As one nurse said: "you are so lucky." "Yes" I replied "I know."
In the wake of a terrible accident that has affected the Crum side of the family, I am reminded all the more to cherish the time and love I have for our family. Our thoughts and prayers are with them all through this difficult time.
On a happy note, Riley was so happy to see her mommy again yesterday that she smiled for the first time. Here are a couple pictures of our girl.
If there is one thing we all have learned through the past several weeks, it is to cherish and appreciate the time we have with the ones we love. Take a moment today to do so...
Saturday, March 26, 2011
Weekend Update
Hi All,
Chase has had a cold this week so Sandy and I decided it would be better if he stayed home this weekend. I wanted to spend some time with Riley, so I drove out to Boston yesterday afternoon and Sandy drove back home to spend the weekend with Chase.
Some updates on Riley. The doctors are slowly weaning her off Ativan - this will be done over the next couple of weeks. They have also switched all of her medications from her PICC line over to her feeding tube. If all goes well in the next couple of days, the PICC line will be removed. This is one less source of infection, and Daddy won't have to be worried about yanking it out accidentally...even though it's sutured into her leg...I'm just a wimp about it. Riley has also started to take some feeds by mouth. She just finished 10cc of milk from one of our Dr. Browns bottles, gave me a little burp, and now she's snoozing happily. The nurses and doctors are very very happy that she is so willing to take a bottle. Often, babies that are intubated for long periods develop oral aversions, but this doesn't seem to be the case with Riley. Assuming that she can learn to breath more efficiently while eating larger amounts of food, it will make oral feeding and weight gain much easier for her and us.
Chase has had a cold this week so Sandy and I decided it would be better if he stayed home this weekend. I wanted to spend some time with Riley, so I drove out to Boston yesterday afternoon and Sandy drove back home to spend the weekend with Chase.
Some updates on Riley. The doctors are slowly weaning her off Ativan - this will be done over the next couple of weeks. They have also switched all of her medications from her PICC line over to her feeding tube. If all goes well in the next couple of days, the PICC line will be removed. This is one less source of infection, and Daddy won't have to be worried about yanking it out accidentally...even though it's sutured into her leg...I'm just a wimp about it. Riley has also started to take some feeds by mouth. She just finished 10cc of milk from one of our Dr. Browns bottles, gave me a little burp, and now she's snoozing happily. The nurses and doctors are very very happy that she is so willing to take a bottle. Often, babies that are intubated for long periods develop oral aversions, but this doesn't seem to be the case with Riley. Assuming that she can learn to breath more efficiently while eating larger amounts of food, it will make oral feeding and weight gain much easier for her and us.
Wednesday, March 23, 2011
Out of the MSICU
Hello All,
We are happy to report that Riley is out of e ICU and is now on the floor to work towards going home! We are so excited for this development as it means that the end is near (about 4 weeks out per our Drs estimate). Riley has been starting to wean off the Ativan and is continuing to have mommy's milk put into her NJ tube. We have also weaned the oxygen from 2L to 1.5L today. Riley has been a little stuffy so she has a constant "humidifier" going as well as nebulizer treatments 4 times a day.
The floor is very different from the ICU. We are able to take a more active role in Riley's care. We can change diapers and hold Riley whenever we want which is such a huge reward! She graciously added to that reward by giving us a dirty diaper today that even made the nurses go "oh my god!". I think she thought it was funny.
Daddy came for a visit today, but is back with Chase now. We are two lucky ladies (and one lucky dude) to have such an awesome man in our lives!
We are happy to report that Riley is out of e ICU and is now on the floor to work towards going home! We are so excited for this development as it means that the end is near (about 4 weeks out per our Drs estimate). Riley has been starting to wean off the Ativan and is continuing to have mommy's milk put into her NJ tube. We have also weaned the oxygen from 2L to 1.5L today. Riley has been a little stuffy so she has a constant "humidifier" going as well as nebulizer treatments 4 times a day.
The floor is very different from the ICU. We are able to take a more active role in Riley's care. We can change diapers and hold Riley whenever we want which is such a huge reward! She graciously added to that reward by giving us a dirty diaper today that even made the nurses go "oh my god!". I think she thought it was funny.
Daddy came for a visit today, but is back with Chase now. We are two lucky ladies (and one lucky dude) to have such an awesome man in our lives!
Sunday, March 20, 2011
A Letter to My Daughter
Dear Riley,
One month ago I cried on your father's shoulder not knowing what to expect in the coming days and weeks. We had found out that you were almost definitely going to be on a heart lung bypass and there was a chance you would not survive. We had planned for the worst months beforehand, but I'm not sure I will ever be able to describe how hard those last few days before you were born were. "How is it possible to love someone so much that you have never met?" I wondered.
At 9am on Sunday February 20th you came into this world without a sound. The nurses and doctors intubated you and after a quick kiss from me you were rushed up to the NICU with Daddy. I had the most wonderful nurse who made sure she brought me up to see you before you went to Children's, and it was there that we were able to take our first pictures together. We went through some tough days in the first couple weeks but there was no better day than when we were told that we would be taking you home someday. Daddy and I celebrated with the most amazing high-fives and hugs you've ever seen.
Here we are, a month later and so much has happened in your young life. You underwent surgery to move your organs and patch your diaphragm, you have undergone countless echos and x-rays, you have been suctioned far more times than you will ever want to remember, you have had and beat your first infection, and you have been poked and prodded way too much.
Don't think that hard work and a tough life doesn't come without rewards. In the past month, you have also been extubated, weaned off most of your meds, gotten your A line out, peed larger diapers than your brother, learned that you LOVE your pacifier, eaten 11cc of milk from a bottle, made all sorts of new friends, and most importantly you have amazed your doctors, nurses and parents with your progress.
You are our tiny miracle and we cannot wait for the exciting weeks to come. We are hopefully moving out of the ICU this week and going to the floor to work on eating and weight gain and looking towards taking you home.
Mommy, Daddy and Chase love you big girl. Happy 1 month!
One month ago I cried on your father's shoulder not knowing what to expect in the coming days and weeks. We had found out that you were almost definitely going to be on a heart lung bypass and there was a chance you would not survive. We had planned for the worst months beforehand, but I'm not sure I will ever be able to describe how hard those last few days before you were born were. "How is it possible to love someone so much that you have never met?" I wondered.
At 9am on Sunday February 20th you came into this world without a sound. The nurses and doctors intubated you and after a quick kiss from me you were rushed up to the NICU with Daddy. I had the most wonderful nurse who made sure she brought me up to see you before you went to Children's, and it was there that we were able to take our first pictures together. We went through some tough days in the first couple weeks but there was no better day than when we were told that we would be taking you home someday. Daddy and I celebrated with the most amazing high-fives and hugs you've ever seen.
Here we are, a month later and so much has happened in your young life. You underwent surgery to move your organs and patch your diaphragm, you have undergone countless echos and x-rays, you have been suctioned far more times than you will ever want to remember, you have had and beat your first infection, and you have been poked and prodded way too much.
Don't think that hard work and a tough life doesn't come without rewards. In the past month, you have also been extubated, weaned off most of your meds, gotten your A line out, peed larger diapers than your brother, learned that you LOVE your pacifier, eaten 11cc of milk from a bottle, made all sorts of new friends, and most importantly you have amazed your doctors, nurses and parents with your progress.
You are our tiny miracle and we cannot wait for the exciting weeks to come. We are hopefully moving out of the ICU this week and going to the floor to work on eating and weight gain and looking towards taking you home.
Mommy, Daddy and Chase love you big girl. Happy 1 month!
Tuesday, March 15, 2011
Tuesday Update!
Hi All,
Sorry for the delay getting an update to you all. We've been busy since the last one!! Where to start. Riley says hi!
Well, when Riley did her first blog post on Thursday, the doctors were starting to talk seriously about taking her vent tube out. Unfortunately she wasn't quite ready yet. The doctors decided that they wanted to try to wean her off of the nitric oxide over the weekend. She has been on the NO, along with oxygen, since birth. A broncho-dilator, it helps with her gas exchange and pulmonary pressures. Over the weekend, the doctors progressively halved her NO levels: 20, 10, 5, 2,5, 1 and then...none! Along the way, they had ultrasounds done on her heart to see what the effects of the reduced NO were on her pulmonary pressures. The results were great; the ultrasounds showed that her pulmonary pressures were about where they should be for a non-CDH baby, despite the reduced NO levels.
While the weaning was going on, Grandma and Poppa Trask brought Chase out for a visit over the weekend. He was excited to see the be-be and liked patting her (gently) on her head. Sandy and I were happy to have some play time with him as well!
Sorry for the delay getting an update to you all. We've been busy since the last one!! Where to start. Riley says hi!
Well, when Riley did her first blog post on Thursday, the doctors were starting to talk seriously about taking her vent tube out. Unfortunately she wasn't quite ready yet. The doctors decided that they wanted to try to wean her off of the nitric oxide over the weekend. She has been on the NO, along with oxygen, since birth. A broncho-dilator, it helps with her gas exchange and pulmonary pressures. Over the weekend, the doctors progressively halved her NO levels: 20, 10, 5, 2,5, 1 and then...none! Along the way, they had ultrasounds done on her heart to see what the effects of the reduced NO were on her pulmonary pressures. The results were great; the ultrasounds showed that her pulmonary pressures were about where they should be for a non-CDH baby, despite the reduced NO levels.
While the weaning was going on, Grandma and Poppa Trask brought Chase out for a visit over the weekend. He was excited to see the be-be and liked patting her (gently) on her head. Sandy and I were happy to have some play time with him as well!
On Sunday, we got word from the doctors that Riley would be ready for extubation on Monday or Tuesday. The doctors also showed showed us her latest chest x-ray. Her left lung is now almost as big as her right! The left lung will never be quite as efficient as the right, but the lung growth is contributing to her breathing, so this is a very very very exciting development that we weren't expecting.
I was ready head out to Boston from work on Monday if the doctors decided to extubate, but then Sandy got word that extubation was scheduled for early Tuesday. Grandma Coombs is up from Florida, so she watched Chase last night and I headed out to Boston so that I could be there early this morning. The doctors confirmed during rounds that Riley was ready to go!! We waited for a few hours until Riley graced us with some awake time, and then the tube was pulled! She is currently getting oxygen from nose cannulae and this is a major improvement over the ventilator. Some pictures are below of Riley without her tape mustache and Mommy having some quality time with her. It's such a joy for us to finally be able to hold her, along with doing some of the diaper changes.
The next steps are to slowly wean Riley off of her sedatives and heart medications which are administered through the PICC line in her thigh. Somewhere along the way, the PICC line will be removed and she'll be closer to being released to the floor (10 East). Once she's on 10 East, she'll work on learning to eat and getting stronger. We're still looking at a few more weeks at Boston Children's, but we are getting closer to bringing our baby girl home!
Thursday, March 10, 2011
Hello World
Hello All,
Mom and Dad have been slacking with updates so I figured I would write in one myself. Life in the MSICU has been pretty exciting lately. To start with, I went on a road trip yesterday down to IR so they could put the feeding tube down in my intestine instead of my stomach. They gave me a "happy cocktail" to make sure I didnt feel anything and boy did it work (shh dont tell mom and dad).
Also, the doctors have been talking and I heard them say that they want to take out my vent tube soon! This is so exciting for me! First, I wont have to deal with this tube in my throat that makes me gag any more, and way more excitingly, as long as I do well, Mom and Dad will be able to hold me. I think that will make them sooooo happy! Cross your fingers for this to happen this weekend!
I am getting used to the dose of sedatives I am on so I have been waking up more recently. Check me out with my eyes open! I can totally see all the awesome toys in my bed now too! Mom said that I have way more waiting for me but they don't all fit.
Mom and Dad keep talking about my big brother Chase. They keep saying he his such a cute little guy and they cant wait for me to go home with him. Im not sure he is ready for me though. I'm a pretty feisty kid as Im sure you have heard.
Well, it is way past my bedtime so I better get going. Cant wait to meet all of you soon!
Love,
Riley Mae
Sent from my mommy's iPad
Mom and Dad have been slacking with updates so I figured I would write in one myself. Life in the MSICU has been pretty exciting lately. To start with, I went on a road trip yesterday down to IR so they could put the feeding tube down in my intestine instead of my stomach. They gave me a "happy cocktail" to make sure I didnt feel anything and boy did it work (shh dont tell mom and dad).
Also, the doctors have been talking and I heard them say that they want to take out my vent tube soon! This is so exciting for me! First, I wont have to deal with this tube in my throat that makes me gag any more, and way more excitingly, as long as I do well, Mom and Dad will be able to hold me. I think that will make them sooooo happy! Cross your fingers for this to happen this weekend!
I am getting used to the dose of sedatives I am on so I have been waking up more recently. Check me out with my eyes open! I can totally see all the awesome toys in my bed now too! Mom said that I have way more waiting for me but they don't all fit.
Mom and Dad keep talking about my big brother Chase. They keep saying he his such a cute little guy and they cant wait for me to go home with him. Im not sure he is ready for me though. I'm a pretty feisty kid as Im sure you have heard.
Well, it is way past my bedtime so I better get going. Cant wait to meet all of you soon!
Love,
Riley Mae
Sent from my mommy's iPad
Tuesday, March 8, 2011
Tuesday 3/8 Update
Hello all!
I know it has been a couple days since we updated so here we go...
This weekend went by so quickly. I came down with the stomach flu on Saturday and by Sunday I was unable to sit up without feeling like collapsing. Thankfully I was able to go over to Brighams to be pumped full of three bags of fluid.
Riley has been doing well being weaned off the vent. We are currently on a PIP of 13 and going down to 12 today. We need to hit 10 to begin extubation talks.
Feeding is not going as well as we had hoped. Riley has thrown up about once a day since getting to full feeds. There are several reasons this could be happening including the fact that she prefers to lay on her tummy which causes pressure, she could be allergic to a med, or her stomach is just sensitive right now. Brian and I mentioned that we were afraid of her aspirating during this especially if she is on her back. Today they are going to try moving he tube down so the food goes into the intestines instead of the stomach. If it doesnt go easily (because her organs could still be jumbled) they will reevaluate.
We had an echo yesterday that shows Riley has alot of pulmonary hypertension and she has been put on soldenophil to try to dilate the vessels. This should hopefully help us wean her off the nitric she is currently on. We are being closely followed by cardiology so we are confident it is under control.
Brian went home this week to be with Chase. They were sitting on the couch last night and Chase pointed to a picture on he wall and said mama. He pointed to the next one and said dada. He then turned around, pointed at Brian and said dada with a huge smile on his face. Someone is happy to have his dada home!
Also, we are ok with visitors if anyone wants to make the trip. Please just let us know in advance. Hopefully you all have a great week!
I know it has been a couple days since we updated so here we go...
This weekend went by so quickly. I came down with the stomach flu on Saturday and by Sunday I was unable to sit up without feeling like collapsing. Thankfully I was able to go over to Brighams to be pumped full of three bags of fluid.
Riley has been doing well being weaned off the vent. We are currently on a PIP of 13 and going down to 12 today. We need to hit 10 to begin extubation talks.
Feeding is not going as well as we had hoped. Riley has thrown up about once a day since getting to full feeds. There are several reasons this could be happening including the fact that she prefers to lay on her tummy which causes pressure, she could be allergic to a med, or her stomach is just sensitive right now. Brian and I mentioned that we were afraid of her aspirating during this especially if she is on her back. Today they are going to try moving he tube down so the food goes into the intestines instead of the stomach. If it doesnt go easily (because her organs could still be jumbled) they will reevaluate.We had an echo yesterday that shows Riley has alot of pulmonary hypertension and she has been put on soldenophil to try to dilate the vessels. This should hopefully help us wean her off the nitric she is currently on. We are being closely followed by cardiology so we are confident it is under control.
Brian went home this week to be with Chase. They were sitting on the couch last night and Chase pointed to a picture on he wall and said mama. He pointed to the next one and said dada. He then turned around, pointed at Brian and said dada with a huge smile on his face. Someone is happy to have his dada home!
Also, we are ok with visitors if anyone wants to make the trip. Please just let us know in advance. Hopefully you all have a great week!
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