We were able to finish Tripps distraction on Christmas Eve, and we all had a wonderful Christmas. Rickys family came on Christmas Eve, my mom and Willie came Christmas day, and then we visited my dad and Pam Monday. My kids are beyond loved and spoiled, and they both got enough toys to keep them busy for the next year or longer. We were all just happy to be together.
We have also enjoyed a whole week at home without any doctor appointments! That has been an awesome present for us! And this week we only have to go get the synagis vaccine, and a speech appointment which is an another pretty easy week as well!
All week Tripp has been trying his hardest to get into a sitting position from lying down all by himself, maybe that wont be too far off :)
Saturday, December 31, 2011
Wednesday, December 21, 2011
Home for Christmas
We are so excited! Tripp isn't quite done with his distraction, but tomorrow night after they distract him for the second time we get to go home! We will be doing the rest of the distraction at home by ourselves. Then we will come in for a check up. Then in around a month he will have to come back in to have a surgery to remove the device from his jaw. This is usually outpatient surgery but we will probably stay one night just because we live so far away.
That will be the last surgery he has to have until around a year old when he will have his palate repaired; they will also put tubes in, undo his tongue, and do an abr while he is under anesthesia that time. And then they very last surgery will be his gtube reversal and this will be just whenever he can eat everything he needs to by mouth. Hopefully everything will go perfectly from here on out and we will be able to stick to this plan :)
That will be the last surgery he has to have until around a year old when he will have his palate repaired; they will also put tubes in, undo his tongue, and do an abr while he is under anesthesia that time. And then they very last surgery will be his gtube reversal and this will be just whenever he can eat everything he needs to by mouth. Hopefully everything will go perfectly from here on out and we will be able to stick to this plan :)
Saturday, December 17, 2011
Dec. 17th
This is the 3rd full day of distraction for Tripp. So far he has done really well. He is tolerating his whole feeding through his gtube, he isnt interested in his bottle but we are assuming its just because his mouth is still very sore. He is now only getting some pain medicine 2x a day, this is when they come to actually turn his pins to distract his jaw. Last night was the first night that he also slept all night long too.
We are just excited that he is doing so well, and for the most part back to his normal self. Hopefully everything will go as planned and we will be home for Christmas :)
We are just excited that he is doing so well, and for the most part back to his normal self. Hopefully everything will go as planned and we will be home for Christmas :)
Wednesday, December 14, 2011
4th Surgery
Tripp had his 2nd jaw distraction yesterday, which was also his 4th surgery all together. We made really good time coming down, there was no traffic which is not usually the case. So we got here and where we were supposed to be about 15 minutes early (1115); and of course like every hospital they were running late. They finally called Tripp back to preop and then took him back to the OR around 2. Then we waited waited and waited. It was around 615 when we finally got the call from our plastic surgeon that he was done, he had done a fantastic job, and anesthesia was currently trying to get him extubated before he went up to the PICU. We then went up to the PICU waiting room and finally got to come back to see him around 830.
His face is pretty swollen, but he was able to come off the ventilator with no problems and was only on 1 liter of oxygen last night and totally off of the oxygen today. He is still desating while he is asleep, but as we have proven in the past the oxygen is of no help to him with it because of his obstruction.
He is also in a lot of pain, sleeping and resting alot. He is currently just getting some pain meds, iv fluid (normal after surgery just so he doesn't get dehydrated) and some antibiotics so that he doesn't develop any bug post-op.
Other than that, he is doing great and we are waiting for a bed on a step down peds unit. Plastics is planning to try to move his jaw forward a little faster this time (since he is now older and a little bigger) so hopefully we will be home for Christmas :)
His face is pretty swollen, but he was able to come off the ventilator with no problems and was only on 1 liter of oxygen last night and totally off of the oxygen today. He is still desating while he is asleep, but as we have proven in the past the oxygen is of no help to him with it because of his obstruction.
He is also in a lot of pain, sleeping and resting alot. He is currently just getting some pain meds, iv fluid (normal after surgery just so he doesn't get dehydrated) and some antibiotics so that he doesn't develop any bug post-op.
Other than that, he is doing great and we are waiting for a bed on a step down peds unit. Plastics is planning to try to move his jaw forward a little faster this time (since he is now older and a little bigger) so hopefully we will be home for Christmas :)
Friday, December 9, 2011
2nd Distraction-Update
Just a small update--Tripp now will have the scans and surgery on Tues. They can be sure to fit it all into Tuesday and this way he will be intubated one less day.
Wednesday, December 7, 2011
2nd Distraction
Next week Tripp will most likely have a second distraction. His plastic surgeon thinks that it is what he needs to improve his sleep apnea and maybe his feeding issues, but first he wants to get a good picture of how his bones and tongue are laying while he is asleep. To do this, he will be sedated in the OR, if he decides 100% to go ahead with the distraction then he will either do the surgery later that day or the next day. Say a prayer for him for complete healing :)
On a better note, we decided to switch bottles to the pigeon feeder and he has started to eat from a bottle again! Only about 1/3 of his feeding but much better than nothing! We also went and got his 2nd synagis dose today, and had a visit with his GI doctor which he got a good report from!
Oh and Tripp would like to add a little something of his own
,. mnhbbc vhjuyftrzsx ztgpl8uijkhbgb njgvhnmncftfyopl;.yhunmjj6nbbbbbm
:)
On a better note, we decided to switch bottles to the pigeon feeder and he has started to eat from a bottle again! Only about 1/3 of his feeding but much better than nothing! We also went and got his 2nd synagis dose today, and had a visit with his GI doctor which he got a good report from!
Oh and Tripp would like to add a little something of his own
,. mnhbbc vhjuyftrzsx ztgpl8uijkhbgb njgvhnmncftfyopl;.yhunmjj6nbbbbbm
:)
Tuesday, November 29, 2011
Thankful
With everything that we have been through this year, we still have alot to be thankful for! We are thankful for:
1. God- because without him none of us would be where we are today
2. Rickys job- jobs are so hard to come by in todays economy so I am very thankful for his job that God has provided our family with.
3. All of our family and friends. We have gotten so much help and support through everything this year, Im especially thankful to everyone bc we couldnt have got through our 7 week nicu stay without the help, support, and prayers from everyone!
4. Every single nurse, therapist, doctor, and surgeon who has helped our little boy!
5. Insurance that pays all the healthcare providers.
6. Our home with working heat and air conditioning- so many people in our country are homeless or dont have efficient heat and air, Im thankful for both
7. Our 2 cars-everyone isnt able to even have 1 car, so I am thankful that we have a family car that everyone can fit in and ride everywhere we go together and am thankful for Rickys to have a little car that is great on gas he can drive to and from work in.
8. For my family's education-For mine and Ricky's college education and Bella's preschool education :)
9. For Tripp- he is so sweet and a wonderful baby, I am blessed to be his momma :)
10. For a healthy, smart, and outgoing preschooler.
This is just a very small list of things that I am thankful for, and I hope that everyone else is thankful for those everyday things that we HAVE to have (even though they are things that we could actually do without they just make our lives easier).
1. God- because without him none of us would be where we are today
2. Rickys job- jobs are so hard to come by in todays economy so I am very thankful for his job that God has provided our family with.
3. All of our family and friends. We have gotten so much help and support through everything this year, Im especially thankful to everyone bc we couldnt have got through our 7 week nicu stay without the help, support, and prayers from everyone!
4. Every single nurse, therapist, doctor, and surgeon who has helped our little boy!
5. Insurance that pays all the healthcare providers.
6. Our home with working heat and air conditioning- so many people in our country are homeless or dont have efficient heat and air, Im thankful for both
7. Our 2 cars-everyone isnt able to even have 1 car, so I am thankful that we have a family car that everyone can fit in and ride everywhere we go together and am thankful for Rickys to have a little car that is great on gas he can drive to and from work in.
8. For my family's education-For mine and Ricky's college education and Bella's preschool education :)
9. For Tripp- he is so sweet and a wonderful baby, I am blessed to be his momma :)
10. For a healthy, smart, and outgoing preschooler.
This is just a very small list of things that I am thankful for, and I hope that everyone else is thankful for those everyday things that we HAVE to have (even though they are things that we could actually do without they just make our lives easier).
Saturday, November 19, 2011
Cold
Tripp has got his first cold and really bad cough :( We didn't want to wait and see what happened, so we went ahead and took him to the doctor Thursday morning and got an antibiotic. Plus from now on, they do not want us bringing him out in public unless we go to the doctor, and they also do not want us traveling away from Roanoke either.
Tripp's sleep study is tonight so hopefully he gets some good sleep tonight and we can really see what is going on with him!
Tripp's sleep study is tonight so hopefully he gets some good sleep tonight and we can really see what is going on with him!
Wednesday, November 9, 2011
Hearing Aids, Sleep Study, RSV
Lots has been going on in our house! Tripp has finally gotten his hearing aids. We went to get them on Monday afternoon. You can definately tell a difference in his facial expressions now, he is much more excited and smiley all of the time. His speech therapist can also tell a big difference. We just have to work on getting him to turn his head to where the actual sound in coming from now :)
We also got a date for his sleep study! Its the 19th at Wake Forest, so hopefully everything will go smoothly and he will get some good sleep so we can find out what is going on for sure and then we can hurry back to Roanoke for Bellas birthday party the next day!
Tripp was finally approved for the RSV vaccine and we went to get the first dose today! He will have to get this again every month through March for it to remain effective throughout this winter.
Every day we are so thankful for modern medicine and what it has done for Tripp to be able to thrive and live a normal life :)
We also got a date for his sleep study! Its the 19th at Wake Forest, so hopefully everything will go smoothly and he will get some good sleep so we can find out what is going on for sure and then we can hurry back to Roanoke for Bellas birthday party the next day!
Tripp was finally approved for the RSV vaccine and we went to get the first dose today! He will have to get this again every month through March for it to remain effective throughout this winter.
Every day we are so thankful for modern medicine and what it has done for Tripp to be able to thrive and live a normal life :)
Thursday, October 27, 2011
Right Decision
Every procedure comes with problems. Even though Tripp is still having problems with sleep apnea, I know that we made the right choice when it came to the jaw distraction vs tracheostomy. This is what a mom of a prs baby girl that had a trach instead wrote:
"She is five, just started school in august, and is pretty much the picture of health now. She only suffers from "normal" childhood things, colds, ear infection ect. She received a feeding tube and a tracheostomy when she was one month old, and was never home for more than two weeks before we were back in the hospital with another long infection until she was all most three when she had them removed. "
Constantly being in and out of the hospital for years would be the most distruptive thing for our family, and I am so glad that we chose to do our research and chose distraction instead of just going the easy way with a trach.
"She is five, just started school in august, and is pretty much the picture of health now. She only suffers from "normal" childhood things, colds, ear infection ect. She received a feeding tube and a tracheostomy when she was one month old, and was never home for more than two weeks before we were back in the hospital with another long infection until she was all most three when she had them removed. "
Constantly being in and out of the hospital for years would be the most distruptive thing for our family, and I am so glad that we chose to do our research and chose distraction instead of just going the easy way with a trach.
Wednesday, October 26, 2011
Bad news=Good news
Tripp had an ENT appointment yesterday at Wake Forest, and he told us some news that not one person has told us since we have come home. Im not sure why anyone has not mentioned it before though because several different doctors have looked in his ears, and it is not something that happens overnight. But there is fluid behind his ears, which is pretty common in kids with a cleft palate. So we will be getting tubes put in at the same time his cleft is repaired; its not something they do before because then it can lead to milk coming out his ears which can cause more infections.
But the good news about all this fluid is that it may also be causing some of his hearing problems. We are trying not to get too excited about this but the hearing aids may only be a short term thing--just until he gets the tubes put in! We are planning to have an audiologist in on the surgery to do an abr while he is still sedated for the surgery so we will find out that day if his hearing has improved at all after the fluid being drained.
God is so very good!!
But the good news about all this fluid is that it may also be causing some of his hearing problems. We are trying not to get too excited about this but the hearing aids may only be a short term thing--just until he gets the tubes put in! We are planning to have an audiologist in on the surgery to do an abr while he is still sedated for the surgery so we will find out that day if his hearing has improved at all after the fluid being drained.
God is so very good!!
Thursday, October 20, 2011
October
Golly, October sure has been a very busy month for Tripp.
The latest is that Tripps hearing aids should be in next week! It will be so exciting to see how he responds once he can actually hear!
ST and PT are being increased both being increased to once a week for Speech and every other week for Physical Therapy. Speech is being increased because now we also need to work on language/hearing skills along with eating skills. And physical therapy is being increased because while he is not really behind we dont want him getting behind. Tripp still has alot of work to do with head control as he is still not lifting his head up for extended periods of time.
We also went to Wake Forest 2 weeks ago and met with a pulmonologist there who is scheduling a sleep study. They said to call tomorrow if we havent heard of an appointment for it yet, which we havent so Ill be calling tomorrow about that. This same week we also met with his plastic surgeon, he is wanting to push back his cleft surgery for sure until a year old, because this will only give him less room in the back of his mouth. He is going to see how the sleep study goes and see if he grows any more in the next few months. If he doesnt and is still having sleep apnea problems then we will see about a second jaw distraction. He said that he hasnt ever had to do a second one, so hopefully his jaw will grow enough to avoid this and to stop the sleep apnea problem (bc sleep apnea does have some serious long term effects).
On a good note Tripp is not aspirating any more and is doing awesome with bottle feeds. He is consistantly eating about 1/2 of his bottle and a few times has finished all of it. Which is awesome, our speech therapist is very impressed--she says he is blowing all of the pierre robin babies that she has seen out of the water! (Even though he still is having some sleep apnea issues, this is the wonders of the jaw distraction when compared to a trach which is what every other pierre robin baby has in this area) He is also eating about 1/3 of a container of stage 2 baby foods.
The latest is that Tripps hearing aids should be in next week! It will be so exciting to see how he responds once he can actually hear!
ST and PT are being increased both being increased to once a week for Speech and every other week for Physical Therapy. Speech is being increased because now we also need to work on language/hearing skills along with eating skills. And physical therapy is being increased because while he is not really behind we dont want him getting behind. Tripp still has alot of work to do with head control as he is still not lifting his head up for extended periods of time.
We also went to Wake Forest 2 weeks ago and met with a pulmonologist there who is scheduling a sleep study. They said to call tomorrow if we havent heard of an appointment for it yet, which we havent so Ill be calling tomorrow about that. This same week we also met with his plastic surgeon, he is wanting to push back his cleft surgery for sure until a year old, because this will only give him less room in the back of his mouth. He is going to see how the sleep study goes and see if he grows any more in the next few months. If he doesnt and is still having sleep apnea problems then we will see about a second jaw distraction. He said that he hasnt ever had to do a second one, so hopefully his jaw will grow enough to avoid this and to stop the sleep apnea problem (bc sleep apnea does have some serious long term effects).
On a good note Tripp is not aspirating any more and is doing awesome with bottle feeds. He is consistantly eating about 1/2 of his bottle and a few times has finished all of it. Which is awesome, our speech therapist is very impressed--she says he is blowing all of the pierre robin babies that she has seen out of the water! (Even though he still is having some sleep apnea issues, this is the wonders of the jaw distraction when compared to a trach which is what every other pierre robin baby has in this area) He is also eating about 1/3 of a container of stage 2 baby foods.
Tuesday, October 4, 2011
Eye Doctor
So thankful today! Tripp had to go to the eye doctor today and everything looked great and he doesn't have to go back for a year!!
His retina's both look really good and they are in perfect condition (which detachment is a bog concern with sticklers syndrome and something we will have to watch his entire life). Nearsightedness is also a problem with sticklers syndrome, but, he obviously has no way to tell us right now what he can and can not see at this point. So next year we will evaluate for this and also check the retinas again.
Praise the lord for a good day!
His retina's both look really good and they are in perfect condition (which detachment is a bog concern with sticklers syndrome and something we will have to watch his entire life). Nearsightedness is also a problem with sticklers syndrome, but, he obviously has no way to tell us right now what he can and can not see at this point. So next year we will evaluate for this and also check the retinas again.
Praise the lord for a good day!
Friday, September 30, 2011
September
Geez, I cant believe september has went by so fast. So to begin with our baby boy turned 4 months old this month, and he weighed 15lbs 7 oz (62nd%) and 26 in long (85th %). We just have a long and skinny boy and that is just fine with us! As long as he continues to gain weight and height it is also just fine with his doctor :)
So, this month we have had alot of ups and downs. First of all, our pulmonologist did a oxygen saturation study overnight just to see how he was doing. Most of the time (around 97%) he was great and 98% or higher. But that 3% he was still dropping his oxygen sats. They would come in clusters every 45 min to an hour and would be accompanied with a change in his heart rate. This only gives him more evidence to the obsturctive sleep apnea. We will be foloowing up with a pulmonologist at WF to get into a sleep study in 2 weeks since they can not do them on babies at Roanoke.
Our GI doctor put into action another swallow study alot sooner than they recommended at WF, thank goodness!! He felt that if he waits to long to start eating solids from a spoon that he would fall behind. Which our pedi and speech therapist was also thinking as well. So we go for that this thursday, hopefully it will go well and we can start some solids right away.
We have also decided to increase his physical therapy. Even though he is lifting his head up, he only does it for a few mintues at a time and them just lays down if hes on his tummy or slumps over if hes sitting up. We want to tackle this asap, so it doesnt become a bigger problem than it is now.
The best part about September was we all went on our first vacation as a family of 4 to Topsail Island. We all enjoyed just getting to relax and not worrying about all the doctors appointments, and Ricky enjoyed actually spending alot of time with us instend of working. One day while we were there it rained all day, so we decided to take Bella to see her first movie--The Lion King-- while Aunt Hannah and Uncle Garrett stayed back at the house with Tripp. We all had a great time. btw the water was much too cold for baby Tripp to get in, but he had fun hanging out still :)
The upcoming 2 weeks we have an eye exam, speech therapy, swallow study, plastic check up, pulmonology at wf, physical therapy, and a pulmonology appt in roanoke. I will update some more after these next 2 weeks because there will be alot of important appointments coming up. :)
So, this month we have had alot of ups and downs. First of all, our pulmonologist did a oxygen saturation study overnight just to see how he was doing. Most of the time (around 97%) he was great and 98% or higher. But that 3% he was still dropping his oxygen sats. They would come in clusters every 45 min to an hour and would be accompanied with a change in his heart rate. This only gives him more evidence to the obsturctive sleep apnea. We will be foloowing up with a pulmonologist at WF to get into a sleep study in 2 weeks since they can not do them on babies at Roanoke.
Our GI doctor put into action another swallow study alot sooner than they recommended at WF, thank goodness!! He felt that if he waits to long to start eating solids from a spoon that he would fall behind. Which our pedi and speech therapist was also thinking as well. So we go for that this thursday, hopefully it will go well and we can start some solids right away.
We have also decided to increase his physical therapy. Even though he is lifting his head up, he only does it for a few mintues at a time and them just lays down if hes on his tummy or slumps over if hes sitting up. We want to tackle this asap, so it doesnt become a bigger problem than it is now.
The best part about September was we all went on our first vacation as a family of 4 to Topsail Island. We all enjoyed just getting to relax and not worrying about all the doctors appointments, and Ricky enjoyed actually spending alot of time with us instend of working. One day while we were there it rained all day, so we decided to take Bella to see her first movie--The Lion King-- while Aunt Hannah and Uncle Garrett stayed back at the house with Tripp. We all had a great time. btw the water was much too cold for baby Tripp to get in, but he had fun hanging out still :)
Hanging out by the pool
My first swimming trunks :)
The upcoming 2 weeks we have an eye exam, speech therapy, swallow study, plastic check up, pulmonology at wf, physical therapy, and a pulmonology appt in roanoke. I will update some more after these next 2 weeks because there will be alot of important appointments coming up. :)
Wednesday, August 24, 2011
Update
I cant believe it has been almost a month since I have updated this, alot has been going on thats for sure. Tripp is now getting speech and physical therapy, speech to work on eating skills and physical because he is still really stiff in his joints (stiffer than even a newborn should be).
On Sat, August 8th Ricky and I went in to check up on Tripp and we noticed that he wasnt breathing, he would stop for around 30 seconds and then start breathing again and would repeat this pattern. Since we didnt want to go wait in the ER all night we just decided to stay up with him and get him checked out the next day. Sunday we went into our pediatricians office and we decided to try to get an apnea monitor so that we could get some sleep and still know if anything was going on. Well we couldnt get a monitor from any equipment companies on a Sunday so she went ahead and amitted him into the hospital for observation. The next day we ended up being transferred to WF, Tripp ended up getting there a little after 10 and I got there a little after midnight. We ended up staying 2 nights in the hospital and came home on Wed with an apnea monitor. He also got his distractors taken out while we were here, his plastic surgeon has said that his jaw is in a good place and that there isnt anything else that he can do for him at this time. Sometimes he has nights where his monitor does not go off at all and then there are nights where it goes off up to 16 times (that has been the highest amount this far). But on the positive side Tripp was weighed in the hospital and he weighed 13 lbs. 14 oz.! We are so happy that he is finally starting to gain some weight.
The next day after we got home from the hospital, August 11th, Tripp finally lifted his head up during tummy time.
Then on August 19th, I went to the dentist that morning and Tripp rolled over from his back to his belly for his grandmomma and auntie hannah, and then he finally did it again this morning for me daddy and Bella :)
Yesterday on August 23rd, we had another swallow study at Wake Forest and it showed that Tripp is still aspirating but it isnt as bad as it was. And now we can finally start working some with a bottle, 15 ml of formula with 1/2 tablespoon of rice cereal 2x per day. Its a baby step but well take it :)
Today August 24th he had an audiologist appointment for his hearing test. During this he had to stay asleep the entire time, and he would only sleep long enough to get the left ear done. However, this has showed that there is moderate hearing loss in this ear and he will need a hearing aid in this ear for sure. We will be having another appointment soon to do the right ear. At this facility insurance will not pay for hearing aids, but they can transfer us to another facility here in Roanoke where the insurance will cover the hearing aids (thank goodness!)
We have lots of upcoming appointments as well- gtube surgeon, speech and physical therapy, well check up, gi doctor, pulmonology, and eye doctor. Please pray that Tripp just continues to progress and to give us and the doctors the tools/knowledge to help him the best that we can.
On Sat, August 8th Ricky and I went in to check up on Tripp and we noticed that he wasnt breathing, he would stop for around 30 seconds and then start breathing again and would repeat this pattern. Since we didnt want to go wait in the ER all night we just decided to stay up with him and get him checked out the next day. Sunday we went into our pediatricians office and we decided to try to get an apnea monitor so that we could get some sleep and still know if anything was going on. Well we couldnt get a monitor from any equipment companies on a Sunday so she went ahead and amitted him into the hospital for observation. The next day we ended up being transferred to WF, Tripp ended up getting there a little after 10 and I got there a little after midnight. We ended up staying 2 nights in the hospital and came home on Wed with an apnea monitor. He also got his distractors taken out while we were here, his plastic surgeon has said that his jaw is in a good place and that there isnt anything else that he can do for him at this time. Sometimes he has nights where his monitor does not go off at all and then there are nights where it goes off up to 16 times (that has been the highest amount this far). But on the positive side Tripp was weighed in the hospital and he weighed 13 lbs. 14 oz.! We are so happy that he is finally starting to gain some weight.
The next day after we got home from the hospital, August 11th, Tripp finally lifted his head up during tummy time.
Then on August 19th, I went to the dentist that morning and Tripp rolled over from his back to his belly for his grandmomma and auntie hannah, and then he finally did it again this morning for me daddy and Bella :)
Yesterday on August 23rd, we had another swallow study at Wake Forest and it showed that Tripp is still aspirating but it isnt as bad as it was. And now we can finally start working some with a bottle, 15 ml of formula with 1/2 tablespoon of rice cereal 2x per day. Its a baby step but well take it :)
Today August 24th he had an audiologist appointment for his hearing test. During this he had to stay asleep the entire time, and he would only sleep long enough to get the left ear done. However, this has showed that there is moderate hearing loss in this ear and he will need a hearing aid in this ear for sure. We will be having another appointment soon to do the right ear. At this facility insurance will not pay for hearing aids, but they can transfer us to another facility here in Roanoke where the insurance will cover the hearing aids (thank goodness!)
We have lots of upcoming appointments as well- gtube surgeon, speech and physical therapy, well check up, gi doctor, pulmonology, and eye doctor. Please pray that Tripp just continues to progress and to give us and the doctors the tools/knowledge to help him the best that we can.
Monday, July 25, 2011
Sticklers Syndrome
Today we finally heard back from genetics at Wake Forest with Tripps final test results that were sent off. They came back positive for Sticklers Syndrome type 1. This is the most common type of sticklers that is associated with Pierre Robin, it may have it because of a mutation in his genes or inherited it from either Ricky of myself (this will only be known if we are both tested for the syndrome as well, which we may look into at a later time). Fortunately he shouldn't have any cognitive problems because of this, as it effects his hearing, eye sight, and joints. He has already failed one abr (hearing test) and has another one scheduled for next month and I made him an appointment with a pediatric eye doctor this morning (the earliest appointment they had was sept. 23rd.).
Tuesday, July 12, 2011
Weight
We took Tripp back to the pediatrician today for his 3rd check up since weve been home. The first one was on June 2nd which everything was okay and he had gained a little weight since he was discharged from the hospital the day before, 12 lbs 2 oz. The next visit was the following Wed June 6th. At this appointment he had lost 1 oz, 12 lbs 1 oz. Today he had only gained 1 oz since last week 12 lbs 2 oz. He has dropped down to the 55th percentile in his weight, but is 24 in long which is in the 102nd percentile in his height. Since he is not gaining weight along with his height we are going to start him on a higher concentrated formula so that he is getting the same amount of volume but getting more calories, hopefully this helps him gain the weight that he needs to gain. Tomorrow we are traveling back to Wake Forest for a check up appointment with his pediatric general surgeon who did his gtube.
Sunday, July 3, 2011
Finally Home
On Thursday, June 30th we got the surprising news that we were going home the next day. The Plastic Surgeon had decided that his jaw was where it needed to be and that he would distract one last time that evening and then stop. That afternoon was filled with videos we had to watch and other surverys and things that had to be done in order to leave the hospital. The 3 of us, Ricky, Tripp, and myself, finally got back to our house at around 330 Friday afternoon and Bella got here shortly after that. Our first night at home actually went pretty well, Tripp slept the whole night both Friday and Saturday nights. Bella is in love with her new brother but she is still also adjusting to not getting all of the attention, but she is a great big sister! Saturday evening we did have a little excitement when Tripp pulled his gtube out. This ended up with a surprisingly quick trip to the ER to have it placed back, they actually said that this happens quite a bit but hopefully no more for us. But other than that Tripp has just been getting used to being home and we have been trying to get somewhat of a schedule of how a normal day will be. Saturday morning we had a well check up, thanks to our awesome pediatrician with Saturday hours, and it went well. He weighed 12 lbs and 2 oz at his appointment, so he is finally gaining weight without losing it. We will be going to his office pretty often just for weight checks to make sure he is getting all of the food is needs. He will be finding us an audiologist and a gi doctor here (for gtube) for check ups next week and we will continue with ent and plastics at WF. We will be traveling there the 13th, 19th for sure and then a couple of weeks after that to have the distractors removed, and about 2 weeks after that to have another swallow study done. Were hoping these results will be better and at that point we can start working with a bottle again. If there is still any aspiration, they will continue to schedule swallow studies around every 6-8 weeks. After that he will have regular check ups with several doctors in Roanoke and at WF to make sure everything is going the way we want it to. His next planned surgery will be around 8-10 months when they will fix the cleft in his soft palate and they will also undo his tongue-lip adhesion at this time. And then another surgery to reverse the gtube, this will be when he is able to eat everything he needs to without aspirating. For this were hoping before his birthday, but in some cases it can take much longer.
Even though this is no where near the end of this road for Tripp, at least now we are all home as a family together.
God is good, all the time <3
Even though this is no where near the end of this road for Tripp, at least now we are all home as a family together.
God is good, all the time <3
Thursday, June 23, 2011
June 23, 2011--Today was a good day
Today was a good day. Around 230 Ricky and I went down to get a drink and a snack in the cafeteria when we got back to the nicu around 3 Tripp was asleep and before he had went to sleep he had pulled (tape and all) the nasal canula completely off of his face. Since he had been doing good while he was asleep with it off we just decided to take it off and not put it back on. So today we got to take a picture of our little boy with no tubes on his face for the first time in 45 days :) He is continuing to do better each day, and today he weighed 11 lbs and 3.6 oz. The plastics resident also came by and gave us some very good maybe news that he will be talking with Tripps doctor about. If everyone could just please say a prayer that whatever decision they make will be the best for Tripp and our family.
1st picture with no tubes on his face May 11, 2011
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1st picture with no tubes on his face May 11, 2011
2nd picture with nothing on face June 23, 2011 (he loves his paci and loves to be swaddled)
How God Picked
Even though this is for preemie moms, I think it also applies to moms of other children with special problems and needs.
How god picks preemie moms....
Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth, son. Patron saint, Matthew.
"Forest, Majorie, daughter. Patron saint, Ceceila.
"Rutledge, Carrie, twins. Patron saint... give her Gerard. He's used to profanity.
Finally, He passes a name to an angel and smiles, "Give her a premature baby."
The angel is curious. "Why this one, God? She's so happy."
"Exactly, " smiles God. "Could I give a premature baby a mother who does not know laughter? That would be cruel."
"But does she have patience?" asks the angel.
"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it.
"I watched her today. She has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child who comes in a less than perfect way. She doesn't realize it yet, but she is to be envied.
"She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Mommy'' for the first time, she will be witness to a miracle and know it. When she describes a tree or a sunset to a blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, the pen poised in mid-air.
God smiles. "A mirror will suffice."
-Adapted from
Erma Bombeck
Motherhood The Second Oldest Profession
How god picks preemie moms....
Somehow, I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth, son. Patron saint, Matthew.
"Forest, Majorie, daughter. Patron saint, Ceceila.
"Rutledge, Carrie, twins. Patron saint... give her Gerard. He's used to profanity.
Finally, He passes a name to an angel and smiles, "Give her a premature baby."
The angel is curious. "Why this one, God? She's so happy."
"Exactly, " smiles God. "Could I give a premature baby a mother who does not know laughter? That would be cruel."
"But does she have patience?" asks the angel.
"I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it.
"I watched her today. She has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you."
God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness."
The angel gasps, "Selfishness? Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child who comes in a less than perfect way. She doesn't realize it yet, but she is to be envied.
"She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Mommy'' for the first time, she will be witness to a miracle and know it. When she describes a tree or a sunset to a blind child, she will see it as few people ever see my creations.
"I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her patron saint?" asks the angel, the pen poised in mid-air.
God smiles. "A mirror will suffice."
-Adapted from
Erma Bombeck
Motherhood The Second Oldest Profession
Monday, June 20, 2011
June 20, 2011
Since extubation Tripp has been doing pretty well. Today we are at 6mm distraction, when doing this today the plastic surgeon told me that even though weve added 6 mm to the length of his jaw it has probably only made about half of that amount in the back of his throat where he needs the actual room. But this is going fine otherwise. It has made him more fussy, tylenol hasnt been helping so today he got a does of morphine by mouth this helped calm him down to where he could actually sleep. And his oxygen is now at 21% (which is room air) and 2 liters flow. He really is doing alot better than he was before and hopefully we will know some time frame of when he will get to come home by the end of next week. And today he weighed 11 lbs and 5 oz. Other than that were just hanging out playing a waiting game. If anyone is interested in seeing a picture of what his distractors look here it is. There is a piece of tubing that connects each side together. This was taken saturday June 18th.
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Friday, June 17, 2011
Extubated
Over the past couple of days Tripp has been intubated. Over the past couple of days I have been concerned that he would pull the breathing tube out because you could tell how much it really bothered him. Well I guess he just knew he didnt need it any more today because he pulled it out earlier in the day and has done fine with it out. He is currently on a nasal canula at 3 liters flow and 25% oxygen. His pain medication is now down to half of the dosage that he started out with after surgery on Tuesday. His plastic surgeon says he looks really good so now were just waiting for him to be distracted to a point where he doesnt block his airway anymore. He feels that we will do at least 15 mm and at that point he will evaluate him to see if he needs to do it further then. And Tripp is now up to 11 lbs and 9 oz.
God is good, all the time.
God is good, all the time.
Tuesday, June 14, 2011
Distraction
Last week wasnt very exciting, just basically working on getting Tripps feeds back up to the normal amount, which happened on friday, and just alot of waiting until he had his surgery today.
Todays surgery went pretty well. They took him back about 715 and were done around 11. They were able to get an iv and avoid a central line (which the nurses werent happy about bc hes a hard stick and the ivs in babies only last a couple of days, but I dont think that he should have something like that just to make their job easier either). And putting in the distractor went well. Because he is quite swollen at this point he came back up to the NICU on a vent, so they will keep him pretty sedated over the next few days until this is able to come out. The distractor itself moved the jaw forward about 1 mm today and then they will start turning the device tomorrow and continue over the next few weeks to get his jaw out far enough to where he can breathe on his own. Older kids have said that the only painful part of the process is the actual surgery so that is good for us to know that he wont be in alot of constant pain over the next few weeks, but he will probably have some tylenol prn in case he does show some signs of pain or discomfort. Hopefully the distraction is the last step we have to take before we all get to come home. (And just so everyone knows the pictures on the internet actually look alot worse than his actually does there is only one small flexible screw that comes out near each ear that they turn each day. We were so happy when we saw that :) ).
Todays surgery went pretty well. They took him back about 715 and were done around 11. They were able to get an iv and avoid a central line (which the nurses werent happy about bc hes a hard stick and the ivs in babies only last a couple of days, but I dont think that he should have something like that just to make their job easier either). And putting in the distractor went well. Because he is quite swollen at this point he came back up to the NICU on a vent, so they will keep him pretty sedated over the next few days until this is able to come out. The distractor itself moved the jaw forward about 1 mm today and then they will start turning the device tomorrow and continue over the next few weeks to get his jaw out far enough to where he can breathe on his own. Older kids have said that the only painful part of the process is the actual surgery so that is good for us to know that he wont be in alot of constant pain over the next few weeks, but he will probably have some tylenol prn in case he does show some signs of pain or discomfort. Hopefully the distraction is the last step we have to take before we all get to come home. (And just so everyone knows the pictures on the internet actually look alot worse than his actually does there is only one small flexible screw that comes out near each ear that they turn each day. We were so happy when we saw that :) ).
Saturday, June 4, 2011
June 2 & 3, 2011
6/2
Not a whole lot happened on Thursday. Mainly some preop lab work for his surgery on Friday. The ENT did come by, at the perfect time (during one of Tripp's episodes where he has trouble breathing and you can hear him rattling louder--these dont happen very often), and decided that as he was being put to sleep the next morning for his gtube surgery that he would do an endoscopy to look at if his airway is being cut off while he is asleep. This has been done while he has been awake in his bed, but everything changes while hes asleep and without anesthesia its impossible to keep him asleep while doing it. Tripp would also become NPO at midnight tonight.
6/3
They were unable to get an IV on him to give him any fluids, so they gave him pedialyte until 3am. His surgery was delayed because they were running late and they didn't take him back until 1245 to the OR. They were able to get him to sleep just fine so the ENT looked down his throat and determined that most of the time he is able to keep a small opening in the back of his throat but there are times where it is completely cut off by his tongue as well. He said hes not sure but hes probably just getting tired and letting his tongue go completely back. Because of this he is not safe to go home to sleep at home at the time and he recommeded that he either needs the trach, or the jaw distraction (sorry guys one of the residents had told me before it was extraction but thats wrong). We obviously do not want Tripp to have a trach put in, it was the reason we brought Tripp to this hospital. Other than this news his surgery went great, they were able to extubate him in recovery, which is always good since with alot of babies this is the hardest part for them. He came back up to his room and hes getting fluids and fentenyl (4 micrograms/hour) by IV. When they see signs that he isnt hurting as much they will start to wean the fentenyl and the fluids will start to be decreased when he gets to start to eat again. The Plastic Surgeon also came by and said that he had talked with the ENT and he has put Tripp on the schedule for the jaw distraction for the 14th (he is out of town next week) but he also said that if somehow he does open his airway enough to come home next week that he would just come home and be taken off of the schedule. I hope that he does just get better and gets to come home, but I guess we will wait and see because really theres only one person who knows what will happen and its none of us.
Not a whole lot happened on Thursday. Mainly some preop lab work for his surgery on Friday. The ENT did come by, at the perfect time (during one of Tripp's episodes where he has trouble breathing and you can hear him rattling louder--these dont happen very often), and decided that as he was being put to sleep the next morning for his gtube surgery that he would do an endoscopy to look at if his airway is being cut off while he is asleep. This has been done while he has been awake in his bed, but everything changes while hes asleep and without anesthesia its impossible to keep him asleep while doing it. Tripp would also become NPO at midnight tonight.
6/3
They were unable to get an IV on him to give him any fluids, so they gave him pedialyte until 3am. His surgery was delayed because they were running late and they didn't take him back until 1245 to the OR. They were able to get him to sleep just fine so the ENT looked down his throat and determined that most of the time he is able to keep a small opening in the back of his throat but there are times where it is completely cut off by his tongue as well. He said hes not sure but hes probably just getting tired and letting his tongue go completely back. Because of this he is not safe to go home to sleep at home at the time and he recommeded that he either needs the trach, or the jaw distraction (sorry guys one of the residents had told me before it was extraction but thats wrong). We obviously do not want Tripp to have a trach put in, it was the reason we brought Tripp to this hospital. Other than this news his surgery went great, they were able to extubate him in recovery, which is always good since with alot of babies this is the hardest part for them. He came back up to his room and hes getting fluids and fentenyl (4 micrograms/hour) by IV. When they see signs that he isnt hurting as much they will start to wean the fentenyl and the fluids will start to be decreased when he gets to start to eat again. The Plastic Surgeon also came by and said that he had talked with the ENT and he has put Tripp on the schedule for the jaw distraction for the 14th (he is out of town next week) but he also said that if somehow he does open his airway enough to come home next week that he would just come home and be taken off of the schedule. I hope that he does just get better and gets to come home, but I guess we will wait and see because really theres only one person who knows what will happen and its none of us.
Thursday, June 2, 2011
June 1, 2011
Today Tripp's surgery was scheduled for his gtube for friday, we wont know what time on friday until later Thursday. The surgery can be done laproscopically since he is a good size. The actual surgery will take around 2 hours not including the prep and recover time. After this surgery, if something is still wrong with his airway the neonatologist said they would go to ENT and Plastics and say look he needs to be evaluated more closely because this is the only thing that is keeping him from going home. Im hoping and praying that his airway will be better after the surgery because if it does come to him having the jaw extraction then he would be here for several months, so Im hoping and praying that this will not be the case. We also found out the results of his hearing test, it came back that Tripp has some mild to moderate hearing loss in both ears that is permanent because the damage was done to the nerve. He will need hearing aids the rest of his life for him to hear normally. The audiologist also said that she wanted to find us someone who he could see in Roanoke, because with us being out of state she wasn't positive if our insurance would pay for the hearing aids and they can be quite expensive, and that she would also like the test to be repeated in a month or so.
Tuesday, May 31, 2011
May 28, 2011 - May 31, 2011- Who Knows
5/28- 5/30
Well the weekend wasnt very eventful. Friday, Saturday, and Sunday Tripp seemed to continue to get a little bit better each day, going down some on his oxygen needed and his oxygen rate not going down as it was before. No one is sure of what really caused it but Sunday night he had a bad night and had to go up on his oxygen and it was apparent that it was a lot harder for him to breathe. He was this way on Monday as well so the doctors ordered a chest xray, the results were that it was an improvement from his last one on Thursday, so we were still clueless about what caused him to change over night the way he had. Since this was a holiday weekend the specialist that he needed to see weren't in and since in was not an emergent situation he would be seen the next day.
5/31
Today Tripp had a hearing test this morning, results are still not back yet. Then he had his upper gi that was needed before he had surgery for a gtube. This came back with normal results. The ENT came by and said that his vocal cords are inflamed and that this may be the reason for the change as it indicates aspiration from acid reflux. For this we are now starting some prevacid, but results may take around a week because all of the inflamation has to go down first. Plastics came by to check on him, everything still looks fine from his initial surgery and as of now we are not looking at the jaw extraction. Most children will outgrow the small jaw and that is what we are hoping for Tripp as this is a pretty invasive surgery and process and he would have to be in the hospital for a few months. However, this is not totally off of the table he still wanted to consult with ENT before making that decision and see how he progresses while we are here. Tomorrow we will see the pediatric surgeon to talk about the surgery for the gtube. On a positive note, once he is done here with all of the procedures and is just waiting to go home, we asked the doctors (this had been mentioned to us at Roanoke so thats why we asked them about it) if he could then be transfered back to Roanoke during this period and they agreed that it would be just fine. So at least the 3 of us would be in our own home just waiting for the 4th to come home. So even though we still arent sure of whats going to happen, or what is actually going on with Tripp right now, there is some light at the end of the tunnel (God must of known I really needed that :) ).
Well the weekend wasnt very eventful. Friday, Saturday, and Sunday Tripp seemed to continue to get a little bit better each day, going down some on his oxygen needed and his oxygen rate not going down as it was before. No one is sure of what really caused it but Sunday night he had a bad night and had to go up on his oxygen and it was apparent that it was a lot harder for him to breathe. He was this way on Monday as well so the doctors ordered a chest xray, the results were that it was an improvement from his last one on Thursday, so we were still clueless about what caused him to change over night the way he had. Since this was a holiday weekend the specialist that he needed to see weren't in and since in was not an emergent situation he would be seen the next day.
5/31
Today Tripp had a hearing test this morning, results are still not back yet. Then he had his upper gi that was needed before he had surgery for a gtube. This came back with normal results. The ENT came by and said that his vocal cords are inflamed and that this may be the reason for the change as it indicates aspiration from acid reflux. For this we are now starting some prevacid, but results may take around a week because all of the inflamation has to go down first. Plastics came by to check on him, everything still looks fine from his initial surgery and as of now we are not looking at the jaw extraction. Most children will outgrow the small jaw and that is what we are hoping for Tripp as this is a pretty invasive surgery and process and he would have to be in the hospital for a few months. However, this is not totally off of the table he still wanted to consult with ENT before making that decision and see how he progresses while we are here. Tomorrow we will see the pediatric surgeon to talk about the surgery for the gtube. On a positive note, once he is done here with all of the procedures and is just waiting to go home, we asked the doctors (this had been mentioned to us at Roanoke so thats why we asked them about it) if he could then be transfered back to Roanoke during this period and they agreed that it would be just fine. So at least the 3 of us would be in our own home just waiting for the 4th to come home. So even though we still arent sure of whats going to happen, or what is actually going on with Tripp right now, there is some light at the end of the tunnel (God must of known I really needed that :) ).
Friday, May 27, 2011
May 22, 2011- May 27, 2011
5/22
Fentenyl was discharged completely and he was given tylenol by mouth with each feeding. He was also changed to a by mouth antiobiotic so that the central line could be taken out.
5/23
This is the first day that we tried the bottle, but he did not want it, however he had sucked on his paci for a minute or 2 so that was a good sign. Still tired today.
5/24
Ate 10ml from bottle at noon and 15ml from bottle at 6pm. Increasing like this was a good sign to us.
5/25
Ate 8 ml from bottle at noon, 20ml at 3pm, 5 ml at 6pm.
5/26
Ate 16ml from bottle at noon. After this Tripp was much more congested, and the doctors thought we should hold off on the bottle anymore as long as he was having a hard time breathing. A chest xray was done and came back showing some atelectasis and haziness. The doctors weren't sure if this was from him aspirating some or if this was an infection he had picked up. So for precautions he was started on vancomyocin and gentamicin and blood and urine cultures were obtained. A swallow study would also be done the next day. Also Tripp has been consistantly losing a small amount of weight over the past days, and his breastmilk is now being mixed with some enfamil concentrate so that he can get more calories in a feeding with the same amount of volume he needs.
5/27
A swallow study was done this morning and concluded that Tripp is aspirating some each time that he swallows any milk. The test was done with milk, a medium consistency of milk and rice cereal, and then a thicker consistency of milk and rice cereal (this is because sometimes the thicker consistency is easier to swallow and the baby will not aspirate). Unfortunately he did aspirate some into his lungs with each of the 3. The plastic surgeon then came by, and said he wanted to continue to observe Tripp until the beginning to the middle of next week and that if he did not improve any with his airway that he wanted to talk with us about doing a jaw extraction. He wants to see how he does over the next few days because he would be in the hospital for a prolonged period of time after having this surgery and it is not something that he likes to jump into. As of now, if nothing else changes Tripp will most likely have to have a gtube put in sometime to be able to come home. We are able to continue to work with him with a bottle but only with a very small amount of milk, due to the aspiration, one time a day. Now he is getting the rest of his milk by a ng tube, but would be getting that by the gtube if that is put in. Last night Tripp weighed 10lbs 10 1/2 ounces.
Fentenyl was discharged completely and he was given tylenol by mouth with each feeding. He was also changed to a by mouth antiobiotic so that the central line could be taken out.
5/23
This is the first day that we tried the bottle, but he did not want it, however he had sucked on his paci for a minute or 2 so that was a good sign. Still tired today.
5/24
Ate 10ml from bottle at noon and 15ml from bottle at 6pm. Increasing like this was a good sign to us.
5/25
Ate 8 ml from bottle at noon, 20ml at 3pm, 5 ml at 6pm.
5/26
Ate 16ml from bottle at noon. After this Tripp was much more congested, and the doctors thought we should hold off on the bottle anymore as long as he was having a hard time breathing. A chest xray was done and came back showing some atelectasis and haziness. The doctors weren't sure if this was from him aspirating some or if this was an infection he had picked up. So for precautions he was started on vancomyocin and gentamicin and blood and urine cultures were obtained. A swallow study would also be done the next day. Also Tripp has been consistantly losing a small amount of weight over the past days, and his breastmilk is now being mixed with some enfamil concentrate so that he can get more calories in a feeding with the same amount of volume he needs.
5/27
A swallow study was done this morning and concluded that Tripp is aspirating some each time that he swallows any milk. The test was done with milk, a medium consistency of milk and rice cereal, and then a thicker consistency of milk and rice cereal (this is because sometimes the thicker consistency is easier to swallow and the baby will not aspirate). Unfortunately he did aspirate some into his lungs with each of the 3. The plastic surgeon then came by, and said he wanted to continue to observe Tripp until the beginning to the middle of next week and that if he did not improve any with his airway that he wanted to talk with us about doing a jaw extraction. He wants to see how he does over the next few days because he would be in the hospital for a prolonged period of time after having this surgery and it is not something that he likes to jump into. As of now, if nothing else changes Tripp will most likely have to have a gtube put in sometime to be able to come home. We are able to continue to work with him with a bottle but only with a very small amount of milk, due to the aspiration, one time a day. Now he is getting the rest of his milk by a ng tube, but would be getting that by the gtube if that is put in. Last night Tripp weighed 10lbs 10 1/2 ounces.
Thursday, May 26, 2011
Birth - May 21, 2011
5/11
Ricky Lee Collins III "Tripp" was born at 10:55 am via csection at Roanoke Memorial Hospital. He was 11 lbs 0.3 oz and 22 inches long. Shortly after being born, the staff decided that while I would go into the recovery room that Tripp would have to go down to the newborn nursery because he wasn't breathing as well as they would have liked to be monitored. They said that this would only be for a short amount of time but he would be ok. Little did we know that he would be soon be sent upstairs to the NICU and diagnosed with Pierre Robins Syndrome, which has caused him to have a cleft palate and a recessed chin--this is his main problem because it causes his tongue to block his airway so he is not able to breathe.
5/12-5/15
Tripp remained in the nicu at Roanoke Memorial. Here he was monitored. Each doctor that saw him here recommended that he should have a trach. to open up his airway so we would be able to bring him home, opening up his airway would be the only way we could bring him home. However, in these few days we had also done our own research and found that their were other ways to treat his condition that our hospital did not offer. After talking about these with Tripp's attending doctor he did some research for us on hospitals in the area that offered the 2 treatments. He had found out between sat. and sun. that wake forest and uva both offered the tongue lip adhesion however, wake forest also offered the jaw extraction it was unclear whether they did the jaw extraction at UVA as well but we decided then since we weren't sure which one Tripp would need that if Wake Forest could come and get him that day that we would go ahead and transfer him there and if they couldn't then monday morning we would see if UVA could do both as well and then chose between the 2. It turns out that Wake Forest could come and get him and that night he was flown to Brenners Children Hospital while we drove behind him.
5/16
At this point plastics had decided that they would be observing Tripp for a day or 2 to decide which if any operation that he would need. This in itself was frustration because we have already waited 5 days at the previous hospital and we know that unless he is on his stomach he is not able to breathe.
5/17
We talk with the plastics attending again tues. evening and he has decided that Tripp's condition is not severe enough for the jaw extraction, but he does need the tongue lip adhesion and this should open up his airway. This surgery is also less invasive so he likes to try this option first, but if it does not work then we would see about the jaw extraction. He scheduled his surgery for friday morning.
5/18
Tripp saw a speech therapist and drank 4ml out of a Haberman Bottle. This is a special bottle that doesn't require the baby to suck as hard, which he is not able to because of his cleft palate they say it would be like using a vaccum with a hole in it, you still have some suction but it isnt as strong. I also refer to this as his "cadillac" bottle, because if bottles were cars it would compare to the price of a cadillac.
5/19
Tripp drank 10 ml from his cadillac bottle :). However, after this he had a little tummy trouble, spit up some and also had a hard time breathing and keeping his oxygen rate up. After this happened doctors thought it would be best to hold off on the bottle further until after his surgery.
5/20
He became NPO at midnight, which makes a very fussy 11 lb newborn, but also necessary for his surgery the next morning. Tripp had his tongue lip adhesion and had no complications during the surgery except it was hard for them to get a secure IV. Because of this they just decided to place a central line in his groin. After his surgery he was very swollen from the surgery and all of the IV fluids that he had recieved. He was getting fentenyl for pain, and he was also sounded pretty congested.
5/21
Swelling has gone down some, but not completely. Feedings were started back at noon at 15 ml to see how he was going to tolerate food on his stomach and were increased by 5 ml each feeding (which is every 3 hours). Starting to wean off of the fentenyl, decreased this amount by half and added tylenol. Doctors also said that once he was interested in sucking on his pacifier that we could try bottle feeds again. The best news is he could finally lay on his back and breathe!!!
Ricky Lee Collins III "Tripp" was born at 10:55 am via csection at Roanoke Memorial Hospital. He was 11 lbs 0.3 oz and 22 inches long. Shortly after being born, the staff decided that while I would go into the recovery room that Tripp would have to go down to the newborn nursery because he wasn't breathing as well as they would have liked to be monitored. They said that this would only be for a short amount of time but he would be ok. Little did we know that he would be soon be sent upstairs to the NICU and diagnosed with Pierre Robins Syndrome, which has caused him to have a cleft palate and a recessed chin--this is his main problem because it causes his tongue to block his airway so he is not able to breathe.
5/12-5/15
Tripp remained in the nicu at Roanoke Memorial. Here he was monitored. Each doctor that saw him here recommended that he should have a trach. to open up his airway so we would be able to bring him home, opening up his airway would be the only way we could bring him home. However, in these few days we had also done our own research and found that their were other ways to treat his condition that our hospital did not offer. After talking about these with Tripp's attending doctor he did some research for us on hospitals in the area that offered the 2 treatments. He had found out between sat. and sun. that wake forest and uva both offered the tongue lip adhesion however, wake forest also offered the jaw extraction it was unclear whether they did the jaw extraction at UVA as well but we decided then since we weren't sure which one Tripp would need that if Wake Forest could come and get him that day that we would go ahead and transfer him there and if they couldn't then monday morning we would see if UVA could do both as well and then chose between the 2. It turns out that Wake Forest could come and get him and that night he was flown to Brenners Children Hospital while we drove behind him.
5/16
At this point plastics had decided that they would be observing Tripp for a day or 2 to decide which if any operation that he would need. This in itself was frustration because we have already waited 5 days at the previous hospital and we know that unless he is on his stomach he is not able to breathe.
5/17
We talk with the plastics attending again tues. evening and he has decided that Tripp's condition is not severe enough for the jaw extraction, but he does need the tongue lip adhesion and this should open up his airway. This surgery is also less invasive so he likes to try this option first, but if it does not work then we would see about the jaw extraction. He scheduled his surgery for friday morning.
5/18
Tripp saw a speech therapist and drank 4ml out of a Haberman Bottle. This is a special bottle that doesn't require the baby to suck as hard, which he is not able to because of his cleft palate they say it would be like using a vaccum with a hole in it, you still have some suction but it isnt as strong. I also refer to this as his "cadillac" bottle, because if bottles were cars it would compare to the price of a cadillac.
5/19
Tripp drank 10 ml from his cadillac bottle :). However, after this he had a little tummy trouble, spit up some and also had a hard time breathing and keeping his oxygen rate up. After this happened doctors thought it would be best to hold off on the bottle further until after his surgery.
5/20
He became NPO at midnight, which makes a very fussy 11 lb newborn, but also necessary for his surgery the next morning. Tripp had his tongue lip adhesion and had no complications during the surgery except it was hard for them to get a secure IV. Because of this they just decided to place a central line in his groin. After his surgery he was very swollen from the surgery and all of the IV fluids that he had recieved. He was getting fentenyl for pain, and he was also sounded pretty congested.
5/21
Swelling has gone down some, but not completely. Feedings were started back at noon at 15 ml to see how he was going to tolerate food on his stomach and were increased by 5 ml each feeding (which is every 3 hours). Starting to wean off of the fentenyl, decreased this amount by half and added tylenol. Doctors also said that once he was interested in sucking on his pacifier that we could try bottle feeds again. The best news is he could finally lay on his back and breathe!!!
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