These are from the past 4 or 5 days. Enjoy!
Tuesday, April 28, 2009
Monday, April 27, 2009
April 27th
The past few days have been somewhat uneventful. Jett has not been able to increase his oral intake due to the amount of undigested milk he is pooping out. This is expected because he only has a limited surface area that actually absorbs the nutrients before it exits his body. He has been receiving the medication to break-up the blockages in his lower intestines which seems to be working. Last night he weighed 9 lbs...he is a chunky monkey that boy! I was able to give him a sponge bath yesterday and have continued to nurse him once a day. He is such a sweet little guy and he thanks you all for your prayers! Pictures to come.....
Oh....Jace's soccer game followed suit with the last practice and game. His shoes and cleats were removed probably within 10-15 minutes into the game. When he did play, he stayed far from the ball and the other players. It was a great laugh!!!
xo
Liz
Oh....Jace's soccer game followed suit with the last practice and game. His shoes and cleats were removed probably within 10-15 minutes into the game. When he did play, he stayed far from the ball and the other players. It was a great laugh!!!
xo
Liz
Friday, April 24, 2009
today's date...unknown
Jett has continued to eat well all week long. He is now eating 20 mls (2/3 of an oz) every 3 hours. The doctors also let me nurse him for the first time today. We were somewhat successful although he was a very sleepy baby. I will be able to nurse him once a day until he gets the hang of it. The goal now is to get him off the IV nutrition and on full feeds and unfortunately there is no way to know how much he is getting when I nurse.
His lower bowels (which have yet to be used for digestion) were tested the past few days to see what condition they are in. It seems there is also an obstruction in there as well, so Mucomyst will be given to him to try to push all the built-up mucus and meconium through. It worked for the upper portion of his bowels so we are praying it will work for this too!
Jace has another soccer game tomorrow. Hopefully he will choose to participate. Thursday at practice he got too hot and wanted to go home after about 10-15 minutes. Tonight he seems excited but mostly because his Grandma, Grandpa, Nana, Pop and mom and dad will be there to watch. We will see........downloading more pics tomorrow
love
liz
His lower bowels (which have yet to be used for digestion) were tested the past few days to see what condition they are in. It seems there is also an obstruction in there as well, so Mucomyst will be given to him to try to push all the built-up mucus and meconium through. It worked for the upper portion of his bowels so we are praying it will work for this too!
Jace has another soccer game tomorrow. Hopefully he will choose to participate. Thursday at practice he got too hot and wanted to go home after about 10-15 minutes. Tonight he seems excited but mostly because his Grandma, Grandpa, Nana, Pop and mom and dad will be there to watch. We will see........downloading more pics tomorrow
love
liz
Thursday, April 23, 2009
Jace and Jett are both doing well. Jace has soccer practice today. Jett had a procedure this morning to see if his lower intestines are blocked. The doctors want to start putting stuff in his large intestine to get it working so when the reconnect the two, they will both be functioning well together. We are getting ready to go to the hospital to see how he did. We will update everyone with the results as soon as we get them. Today is Jetts four week anniversary.
-PJ
-PJ
Monday, April 20, 2009
April 20th....again
So I guess I got ahead of myself last night and dated my entry as April 20th. Today really is the 20th. The Dr.'s continue increasing the amount of milk Jett receives. He now is getting 12 mls every 3 hours. His weight also continues to increase, tonight he was 8 lbs 9 oz. His output contiues to be steady so until there is a problem, they will continue increasing the feeds.
A pulmonologist who is a CF specialists came by today and spoke with Pj and I. He was very optimistic about the disease and the life expectancy of a baby with CF. It's so nice to hear good news from a doc! He ordered for Jett to begin Physical therapy on his chest. This is a preventive measure to keep his lungs healthy and help drain mucus. The therapist came in when I was there and taught me how to do it. The dr. recommends doing it for 15 minutes a day for now.
We also have a meeting scheduled with the Ostomy nurse this week. She will show us how to care for the ostomy once he comes home. The ostomy is his new and temporary "pooper", it is on the left side of his belly and continuosly drains stool. Because the stool is acidic, there are techniques and specific items they recommend to decrease the skin breakdown and infection around the hole. I am glad they are teaching us things we need to know when we get home....it seems like there may be a light at the end of the tunnel.
Love to All!
Liz
A pulmonologist who is a CF specialists came by today and spoke with Pj and I. He was very optimistic about the disease and the life expectancy of a baby with CF. It's so nice to hear good news from a doc! He ordered for Jett to begin Physical therapy on his chest. This is a preventive measure to keep his lungs healthy and help drain mucus. The therapist came in when I was there and taught me how to do it. The dr. recommends doing it for 15 minutes a day for now.
We also have a meeting scheduled with the Ostomy nurse this week. She will show us how to care for the ostomy once he comes home. The ostomy is his new and temporary "pooper", it is on the left side of his belly and continuosly drains stool. Because the stool is acidic, there are techniques and specific items they recommend to decrease the skin breakdown and infection around the hole. I am glad they are teaching us things we need to know when we get home....it seems like there may be a light at the end of the tunnel.
Love to All!
Liz
Sunday, April 19, 2009
April 20th
Jett was a pleasant little man again today. During my visit he was awake for most of the time. I gave him a sponge bath and washed his hair and then was able to give him his bottle which is now 10 mls. I spoke with my social worker and she is arranging a meeting with all of the doc's for me. There are so many different specialties involved in Jett's care, we just wanted to know what's next for him and if we are getting close to bringing him home. It seems like he is doing so well and I know he has a long way to go before we bring him home but want to know if they think he's on track to come home in a month or 5 months.
Oh, and last night he weighed 8 lbs 7 oz. He is just amazing, we call him our little FIGHTER JETT!!!
Thank you all for the thoughts, prayers and encouraging words you send our way!!
Saturday, April 18, 2009
April 18th
I have really enjoyed hearing from so many people that are thinking and praying for Jett. I appreciate all of the encouraging and thoughtful words. Many times I receive the messages on my blackberry throughout the day and it's just such a blessing to hear from you all especially when I need some reassurance or a laugh or whatever feeling your messages provoke!
Jett is doing well and has continued eating hs milk like a good boy. They have increased his feeding from 6ml to 7 ml and now 9ml every 3 hours. When we arrived at the hospital today we were so happy to find they removed the NG tube which goes from his nose to his belly. He looks so adorable and very healthy. His weight two nights ago was 8lbs 5 oz. He is a big boy! And to think he was not supposed to be born for another 10 days!! I will download the pics we took of him today without the yucky tube.
Jace had his first soccer game this morning. We laughed a lot, he ran a lot. He seems to enjoy practices more than the game. He is not too into confrontation and "taking" the ball from the other players. In fact, he worked hard not to make contact with the ball at all. As my dad put it.... there's always basketball!
Love
liz
Jett is doing well and has continued eating hs milk like a good boy. They have increased his feeding from 6ml to 7 ml and now 9ml every 3 hours. When we arrived at the hospital today we were so happy to find they removed the NG tube which goes from his nose to his belly. He looks so adorable and very healthy. His weight two nights ago was 8lbs 5 oz. He is a big boy! And to think he was not supposed to be born for another 10 days!! I will download the pics we took of him today without the yucky tube.
Jace had his first soccer game this morning. We laughed a lot, he ran a lot. He seems to enjoy practices more than the game. He is not too into confrontation and "taking" the ball from the other players. In fact, he worked hard not to make contact with the ball at all. As my dad put it.... there's always basketball!
Love
liz
Thursday, April 16, 2009
April16th
Jett had another great day. He is just the happiest baby and it doesn't bother him at all to be messed with by all of the doctors and nurses (and mommy, daddy and jace). He tolerated the pedialyte well so they began feeding him breastmilk today. So far he has had 3 feedings of breastmilk and has done great with it. The nurses measure how much of the milk is absorbed by aspirating the tube going in his belly and so far he has digested all of the milk. He only received a tiny bit of milk during each feed but so far so good!
Wednesday, April 15, 2009
Big and little brothers
Video of Jace holding Jett for the first time. Jace was sooooo sweet. Jace was singing, kissing and telling Jett that his big brother loves him very much. It was the cutest thing in the whole world. Just to update everyone they started Jett's feeds again today April 15, 2009. They started him on 5cc of pedialyte every four hours and so far he is doing well with it.
Tuesday, April 14, 2009
Tuesday 4/14/09
Jett is making great progress today. He is finally having stool pass through him, which means he is one step closer to getting back on mommy's milk. If he can tolerate that it will only be a matter of time before he can come home with his family. Jace also got to hold Jett again today, he is such a good big brother. I will be putting video of that up later today. Keep praying for us all!!!
Monday, April 13, 2009
April 13th
Today Jace got to hold his little brother for the first time....what a great big bro he is!
Jett is doing well, no real changes in the last few days. He still is not producing stool from his ostomy and therefore will not get any food by mouth. He willl continue to get his nutrients from an I.V. for now. The doctors are hoping to clear his bowel out by starting a new med call mucomyst. It should help break-up the mucus inside of his intestines. We are hoping he can start eating by the end of the week.
Saturday, April 11, 2009
April 11, 2009
Jett had another great day. He was visited today by special guests...Grandpa Pat and Grandma Wanda (his Great Greatparents). Wanda held him and he loved it!
I spoke with the GI doctor yesterday and he made the recommendation of eventually putting in a G-tube. This will allow him to get extra nutrients over the night time or whenever he would need additional food. He will probably come home with this and could potentially have it for years. This would be used only when he can tolerate food which currently he is not.
Right now the doctors think there is an obstruction in his bowel from either meconium and excess secretions or possibly just the inflammation of the bowel. We are hoping this will clear on it's own and he will not need an additional surgery to remove the blockage or open the ostomy a bit more. Other than the bowel he is doing excellent. He no longer is receiving antibiotics for his sepsis. My girlfriend is a nurse on his unit and is watching out for him and caring for him during the night hours. It has been wonderful to have Erica there so we can get a goodnight sleep :)
Jett had another great day. He was visited today by special guests...Grandpa Pat and Grandma Wanda (his Great Greatparents). Wanda held him and he loved it!
I spoke with the GI doctor yesterday and he made the recommendation of eventually putting in a G-tube. This will allow him to get extra nutrients over the night time or whenever he would need additional food. He will probably come home with this and could potentially have it for years. This would be used only when he can tolerate food which currently he is not.
Right now the doctors think there is an obstruction in his bowel from either meconium and excess secretions or possibly just the inflammation of the bowel. We are hoping this will clear on it's own and he will not need an additional surgery to remove the blockage or open the ostomy a bit more. Other than the bowel he is doing excellent. He no longer is receiving antibiotics for his sepsis. My girlfriend is a nurse on his unit and is watching out for him and caring for him during the night hours. It has been wonderful to have Erica there so we can get a goodnight sleep :)
Friday, April 10, 2009
April 10th, 2009
Jett is doing well, he has been moved from the most critical unit to a less intense unit. We are still waiting for his stomach to heal and the inflammation to go down before they will try feeding him again. He currently gets all of his nutrition from an IV. The surgeon said yesterday it may be a week or two before they try again. His Cystic Fibrosis results finally came back and they have confirmed that he does have it. Although we knew he did, we were hoping for a miracle. It was hard not to be teary eyed yesterday after hearing the news.
Meanwhile, Jace had his first soccer practice and was a star. I’ve never laughed so hard! He was running all over the place…sometimes after a ball but sometimes not! He forgot many times that he wasn’t supposed to use his hands. He was very excited to show off his new shoes and shin guards. The best part was his commentating….Coach would tell them to do something and he would say “ALRIGHT! LET”S GO!” He’d look over at me and say,”I’m going to be the winner mommy!”
Meanwhile, Jace had his first soccer practice and was a star. I’ve never laughed so hard! He was running all over the place…sometimes after a ball but sometimes not! He forgot many times that he wasn’t supposed to use his hands. He was very excited to show off his new shoes and shin guards. The best part was his commentating….Coach would tell them to do something and he would say “ALRIGHT! LET”S GO!” He’d look over at me and say,”I’m going to be the winner mommy!”
Tuesday, April 7, 2009
April 4th
Today Jett had to give up mommy's milk. I am not sure why. I do know he is not eliminating like the doctor wanted. He has also lost weight so they have put the tube in his nose and into his stomach to eliminate bile I think. He is back totally on I V nutrition which is hard on his liver. No one said how long it would be before they start him on breast milk again.
Liz was disappointed. She has had an upset tummy for days and thinks she may have the flu... I think she has an upset stomach because she has been through so much and is stressed out. She has not held him yet because of her tummy, just in case she does have the flu.
Please keep up the prayers for Jett, Liz, PJ and Jace.
Love, Patty/Nana
Liz was disappointed. She has had an upset tummy for days and thinks she may have the flu... I think she has an upset stomach because she has been through so much and is stressed out. She has not held him yet because of her tummy, just in case she does have the flu.
Please keep up the prayers for Jett, Liz, PJ and Jace.
Love, Patty/Nana
April 1st
Jett had another great day. He now weighs 7 pounds 7 ounces!! He is improving everyday. Tomorrow, Thursday morning sometime, he will go to surgery and have a central line put in. He will be put back on the ventilator while he is having surgery. It should only take about 1/2 hour to put in. If you get this message tonight or early Thursday, please pray for our little man...
Love, Patty
Love, Patty
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