Well today was another good day for Bentley~ after a pretty much a sleepless night, his day was great! I think he has his days and nights messed up. He is the most peaceful baby during the day ~ and then about 9ish he turns into a crying machine. At least the days are good. The Dr.'s came in today to watch me do the dressing change, they were again amazed at how good his omphalocele looks. O.T. was sent to measure Bentley today for his "compression garment thing" for his tummy. Home support came and told Chris and I that tomorrow at 2 we would be doing a course on NG tube insertion and feeding. I have mixed feelings about it. I'm SO scared to do it but it means we would get Bentley home A LOT sooner?!? Bailey and Brooklyn spent the day at the mall with friends, and had a blast. Bergen was with us at the hospital~ he has been such a good boy ~ the hospital has been hard on him, but he's done amazing. We continue to ask for your prayers and well wishes as we really want Bentley to come home. The issues right now are getting enough milk into him before he tuckers out, gaining weight, and getting this tummy garment made. We are on the right track......can't wait to be home as a family!
Luv,
Chris, Nicole and the kids
Bentley
Wednesday, December 29, 2010
Sunday, December 26, 2010
Christmas/Boxing Day
Well where to start.....Christmas day at the hospital all four of our kids were given gifts from Santa. We also opened our stockings there. We had turkey dinner in one of the family lounges, that had been sent to us from some ladies from the church. Bentley was completely off of the "TPN" and was able to keep his sugar level up on his own. Chris took the kids and went home~on Bentley's last bottle of the night, the nurse came in and assessed him and told me he couldn't bottle feed because he was breathing to fast and they thought he could aspirate so back to NG feeding. Not a huge deal because he is at least still being fed. He was SO unsettled during the night, his heart rate went up to 208 beats/ minute, and his O2 level kept dropping~ I called the nurse and she decided to vent his tummy through the tube in his nose, he was full of air, and as soon as he had been vented he fell asleep (2:45 am). Today the surgeon came in and did his dressing change everything looks great! He then told me we would not be feeding through the NG tube today unless we had to, he wanted Bentley to do all bottle feeding unless his respiratory rate was too high. He was to eat every 2 hours by bottle daytime hours then, continuous feed through the night. So far so good! Tomorrow every 3 hours and if he continues to tolerate feeds, he will be on breast feeding or bottle feeding by the end of the week. One step closer to coming home!!! Christopher is staying tonight, and I'm home with the kids. Not too sure where I get more rest?! Thank you to all of you, for the support, gifts, food, help with the kids.....This has not been easy on us but we sure couldn't have even come this far without all the help. We received a "care package" today from friends that had enough food for a week~home made never tasted SO good. Amazing family and friends ~ we are so lucky~
Friday, December 24, 2010
Christmas Eve
For the last three days, we have been giving Bentley bottles, and they are going to increase the amount of bottles he will be fed a day from 2 to 4.The TPN (which has been giving Bentley greif) was cut in half today and he is tolerating it. Tommorrow they plan on stopping the TPN completely. We brought Ben out of the room today for a stroll around they hospital. Bergen was awestruck with the carols and more specifically, the people singing them. He clapped after every song, and was devastated when they stopped singing. By tommorrow, Bentley should be on full feeds if he tolerates them, some people at the church gave us turkey dinner that we will be more than happy to bring to the hospital and eat tommorrow.
Signed,
Bailey
Signed,
Bailey
Thursday, December 23, 2010
Life at the Children's Hospital has been a lot more convenient and comfortable. Nicole stayed the first 2 nights with Bentley and I stayed last night, there were a lot of interuptions and Bentley didn't want to go to sleep until about 3:30. Not sure how Nicole got any rest and was able to function during the day. I guess moms are more resilient that way. There have been some activities that were put on by some of the volunteers here that kept us busy. The kids went to an art class during the afternoon on Tuesday and that night there was a Christmas party held in the main atrium. They brought in a magician and a family of fiddlers to entertain everyone and of course Santa also made an appearance giving out stuffed animals to the kids. We were going to bring Bentley down to the party, but decided against it and gramma stayed with him. He has been getting regular daily visits from the surgery team to change the dressing on his omphalocele. They have been coaching Nicole on how to do the dressing changes and she can pretty much do it by herself if needed. Lets just say that I have been watching from a distance. The omphalocele is looking pretty good and has hardened quite a bit so far, but still a ways to go. We had been getting some signals that made us think we would be able to bring him home within the next week, but we were then told by one of the surgeons that there would be no way he would go home until he is eating good and the omphalocele is strong and thick enough to ensure that it doesn't get damaged. The feeding has now become our latest concern. He has been getting a mixture of fats and sugars through his IV along with breast milk through a feeding tube and bottle feeds twice a day. Yesterday they tried shutting off the IV and continuous feed for a few hours and only do the bottle feed during this time, but after half an hour Bentley's blood sugar level had dropped way too low and they had to get the IV back on ASAP to get him back to safe levels again. Later that night they tried again, but left the continuous feed on with the same disappointing results. They now need to find out why his blood sugar levels keep dropping and come up with a new plan to get him eating without the IV as it is not good for his liver. That is where we are at right now, waiting. Hopefully we hear something soon.
Monday, December 20, 2010
Making the Transition
Ah, finally. Bentley has made the switch from Foothills to the Childrens. That is pretty much the only new thing (that I know of). This is going to be a very fun week! Visiting Ben and then Christmas! Im SUPER excited! We spent a bit of the night yesterday at the hospital, and when I was talkng to him, He smiled for the first time! Everyone was holding him, except for me (because I'm still a bit weary to hold him). Just wanted to say thanks on behalf of our family to everyone that helped with us kids, bringing meals, or just as morale support!
Signed,
Bailey
Signed,
Bailey
"Bentley the Bear"
One of the nurses put a sign on Bentley's cot that says "bentley the bear" if you wake me~I will live up to my name!!! Luv Bentley. So as you guessed he was a little grumpy. He was SO hungry but still no feeds by mouth. They have now up'd his NG feeds to 6ml/hour which is more than double what he has ever been fed and now he just sleeps! He is such a cutie, a few of the nurses are all ready "setting him up" with other little babes in nursery. Again today we have been told he may transfer but really I'm getting sick of hearing it but it not happening. I just hope he transfers before Christmas so we can all be with him at the same time on Christmas Day. Otherwise we need to take turns. We don't have a lot of news~yesterday Christopher and I helped do the dressing change (Daddy didn't even pass out!) Bentley's omphalocele looks so good. Things are still moving in the right direction. We are TRYING not to be too excited~cause we know there's up's and down's, but it's hard to stay grounded when all is going SO well. Well I'm going to go get ready so I can try to make it there before rounds, we will keep the information as current as we can~ you guys keep praying!
Luv and Hugs
Luv and Hugs
Saturday, December 18, 2010
Well, since Bailey is "busy" with video games and TV, I thought I better keep you "updated". My mom has been here since Monday which has made it possible for Christopher and I both to spend time with all the kids at different times. It has been great. She went home today and Christopher's mom came up. We are VERY greatful, for both parents help. We also have had people send meals, flowers, gifts, etc.....we feel blessed. But onto what you really want to know....BENTLEY, he is doing great, but again hungry. The DR's had to change from feeding every 2 hours to a VERY SLOW continuous drip feed, because when he has any amount of volume he throws up and it has blood in it. They aren't sure if he has an ulcer or if it's stress or what but today he hasn't gotten sick so it's working but he is not satisfied with a "drip" every few minutes. Today we got to hold him!!! Even Bergen went in to see Bentley ~ HE LOVED TOUCHING HIM. The transfer has been put on hold and will be looked at on a day to day basis. Chris called NICU tonight for an update, and they said they were moving him into a "big boy" cot, meaning he no longer needs all the bells and whistles on his bed. The doctors feel he is doing great and ALL the nurses tell us how adorable he is. Can't imagine life without him.
Nicole
Nicole
Thursday, December 16, 2010
Good News Continues :)
Another day, another huge step forward! Things didn't exactly start off too good, but leave it to the pediatric surgeon to brighten the day. Bentley was quite agitated and unsettled for most of the night which, of course, made Nicole's night one of unrest as well. She felt he was hungry, but was repeatedly told that he couldn't eat anything until there was no more of the mucousy build up in his stomach. The other upsetting thing was that the I.V., which had recently been put into his scalp, was going to get moved again, this time as a pic line to be fed through a vein in his hand, up his arm, and into his chest close to the heart. Then the surgeon came to assess him for the first time. She first told the NICU staff that Bentley should be eating and the tube could be removed from his stomach, then she told Nicole that she would be able to cut the umbilical cord from the omphalocele, which means we then get to finally hold him, and she continued to say how pleased she was at how the omphalocele had a nice wide base with more skin than she had anticipated. The condition of the omphalocele will drastically cut down the amount of time we will have to wait before it can be surgically closed, rumoured to be as soon as one month! Fantastic compared to the 6 or 9 months that it can sometimes take. So at 3:00 this afternoon, Bailey and I were there when Ben ate for the first time. He did great, but was a little over indulgent and ended up spitting most of it up. For his next feeding, Brooklyn fed him through a tube with a syringe as he was a little too tired to wake up to eat with the bottle. He kept that down and has since had a couple more successful feedings, Nicole says he would eat way more than what they are giving him if he could. He's so hungry. We have been told that he will get transferred to the Children's Hospital maybe on Monday which means better care and, because he's doing so well, he may not even need to be in the ICU after they move him. We're very blessed that he is able to make such big leaps forward and that so many of you are praying for him. We know there will still be ups and downs and are trying to stay grounded, but this little guy is showing that nothing is going to keep him down.
Until next time...
Chris
Until next time...
Chris
Wednesday, December 15, 2010
Updates
We just got back from Foothills hospital, and today has been another good day for Bentley. In the night, he pulled out the suction tube that was in his stomach, so they had to put some mittens on him so he couldn't grab the tube again. They also had to move his I.V. because it started to leak. On the brighter side, he had been running a temperature, but it came back down, so their fear of an infection may now be subsided. Bentley also got an echo done to check his heart again and it looks FANTASTIC, what a relief. He is also getting closer to being able to eat. Mom is going crazy in her 8 X 10 room, with only one channel to watch and a speaker above the head of the bed that blares out commands in the middle of the night, she wanted to come home today. She misses Bergen, and possibly the rest of us too. Well, we will keep updating as the information comes to us, but thats about it for now.
Signed,
Bailey
Signed,
Bailey
Tuesday, December 14, 2010
He's Here!!!!
We just recently recieved a call from dad, and yes, Bentley is here! At 11:34, Bentley was born and is in great condition. His lung capacity is good, and he weighs 3.24 kg (just over seven pounds.) Mom is in the recovery room for a bit, and when she is out, we can finally go to meet him!! We will keep you updated with what we know, when we know it. Until then, we will keep in mind the miracle in progress.
Sincerly,
Bailey.
Sincerly,
Bailey.
Saturday, December 11, 2010
Just a couple days.....
We are anxiously awaiting Tuesday. We have decided to make a blog that Bailey will update for us to let you all know how Bentley is doing. We figured anyone wanting information could then get it at their fingertips. Stay tuned......
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