Today overall was not eventful or dramatic, but I am beat. We had a lot of activity with therapist and doctors today just to stop by for a check. It is like having an open door policy here.
Dr. Spence came by to take a skin punch test from Caroline's thigh. This is a type of genetic test that may or may not give us any clues to chromosome analysis or a mosaic pattern of chromosomes that may give Caroline her unique features. We rejoice in all the normal test results as possible, but look for answers to her lack of growth and appetite. The speech therapist came by today to check on us. The Physical therapist came by to do exercises, stretches, tummy time, and message therapy with Caroline for 30 minutes. The Occupational therapist came by to look at Caroline's hands and wrists and made little hand splints to help remind her to keep her wrists straight. She will only have to wear them at night when she sleeps. We have a feeding pump hooked up to her g tube that is giving her only 10 ml an hour of pedialite until 6am. She will begin having g tube feeds at 6am in her tube after she tries to eat with her bottle first. I battled with the nurses and docs today to start her fluids sooner. This did not happen until 3pm today and I was quite frustrated because I know Caroline's ques that say I really am hungry even if it is only for a little bit of milk. So I gave her 10 cc of milk and then told the nurse and doctor that I would be giving her milk every three hours from her bottle. The GI doctor said we could have milk in her tube, but the pediatric doc did not agree even though the GI doc did the surgery - so I got permission to feed her some milk by mouth every three hours. She was in some pain today and a bit fussy for herself. Now she is resting. Carley and mom came to eat dinner with me. I had 2 visitors from church too! We will probably come home Tuesday morning. Please pray that Caroline makes it without having oxygen tonight. She has been weaning from the oxygen cannula today.
Friday, October 12, 2007
Thursday, October 11, 2007
GTube surgery
Caroline has come through surgery well. She is very tired and is resting well. It was a long day for me and I was a little anxious, but she was fine - thank God! She also had her MRI and they just came in after reading it. Caroline has a perfectly normal brain!!! This is a huge answer to prayer and a blessing. Thank you for all your words of encouragement and faithful prayers. She will not have formula or pedialite until tomorrow. She is on tylenol and IV fluids. We have had a long day and will rest tonight. I will talk to some of you soon and give more updates later.
Tuesday, October 9, 2007
Big News
Today was an extremely hard day. We were scheduled for an MRI, but the procedure was stopped midway through. Caroline was put to sleep, while they looked and poked for veins for 45 min. The pediatric anesthesiologist was quite humbled and explained that he could not perform the MRI and he was sorry, but he could not get an IV started. I did not know what to think, but for some reason God did not allow us to have this test and for some reason Caroline was sparred from excess radiation. She has had 5 different total x-rays/ tests that involve radiation and for some reason we were not able to do this today. After the pediatric hospitalist found this out she decided to cancel the procedure. We will not have an MRI as an in patient, but possible in the future as an outpatient procedure.
Caroline was stuck 9-10 times while under sleepy gas. After we recovered in recovery we were brought back up to our room for quite a while and then we met with the GI doc. This happened very quickly. She looked at Caroline, she listened to me and read Caroline's history before meeting with me. She drew out and explained a g-tube procedure and how this would benefit Caroline's feeds and weight gain. I am in full support of this as we have lost weight and not gained much at all here even with a feeding tube. Caroline weighs only 6.8 the same weight we arrived here with. Things are pulling together. We will be here for a while longer. The surgery is scheduled for Thursday at noon. It should only take an hour from start to finish. It is a two part surgery. We will come back in 3 months for the tube to be completed with an external button called a mickey button. The closure is shaped like a Mickey Mouse. So we have many things happening. Cam is gone this week and will not be here for all of this. Carley will be cared for by Nana and Mimi at this time and possible neighbors if glitches arise.If that was not enough to deal with, Caroline was taken away again to a treatment room with a team of people to try to start an IV in several places to re consider the MRI and to prepare for Thursdays surgery. Once again after one hour no success - her veins kept blowing. So we are feeding with her tube only and trying to get rest. Tomorrow we will have an upper GI procedure that is more feeding under an x-ray, but not painful. They are calling in s special manager of a PICU and NICU IV team to run a femoral line from her groin area to establish an IV for Thursdays surgery. Please pray her respiration and oxygen levels will stabilize as she is on oxygen now. She has been for 24 hours. We will be going home with a sleeping monitor and a feeding tube. We also have to be trained on how to use her monitor and CPR training from a video tape. Caroline has never weighed 6.11 that was in accurate info. She is still just 6.8.
I can not wait to see what God has planned for Caroline's life. She is still holding her own. What a very strong little girl. And what a great privilege it is to be her mom. She still smiles and looks up at us with such a sweet spirit.
Caroline was stuck 9-10 times while under sleepy gas. After we recovered in recovery we were brought back up to our room for quite a while and then we met with the GI doc. This happened very quickly. She looked at Caroline, she listened to me and read Caroline's history before meeting with me. She drew out and explained a g-tube procedure and how this would benefit Caroline's feeds and weight gain. I am in full support of this as we have lost weight and not gained much at all here even with a feeding tube. Caroline weighs only 6.8 the same weight we arrived here with. Things are pulling together. We will be here for a while longer. The surgery is scheduled for Thursday at noon. It should only take an hour from start to finish. It is a two part surgery. We will come back in 3 months for the tube to be completed with an external button called a mickey button. The closure is shaped like a Mickey Mouse. So we have many things happening. Cam is gone this week and will not be here for all of this. Carley will be cared for by Nana and Mimi at this time and possible neighbors if glitches arise.If that was not enough to deal with, Caroline was taken away again to a treatment room with a team of people to try to start an IV in several places to re consider the MRI and to prepare for Thursdays surgery. Once again after one hour no success - her veins kept blowing. So we are feeding with her tube only and trying to get rest. Tomorrow we will have an upper GI procedure that is more feeding under an x-ray, but not painful. They are calling in s special manager of a PICU and NICU IV team to run a femoral line from her groin area to establish an IV for Thursdays surgery. Please pray her respiration and oxygen levels will stabilize as she is on oxygen now. She has been for 24 hours. We will be going home with a sleeping monitor and a feeding tube. We also have to be trained on how to use her monitor and CPR training from a video tape. Caroline has never weighed 6.11 that was in accurate info. She is still just 6.8.
I can not wait to see what God has planned for Caroline's life. She is still holding her own. What a very strong little girl. And what a great privilege it is to be her mom. She still smiles and looks up at us with such a sweet spirit.
BIG news
Today has been the hardest day at the hospital. Poor little Caroline. We had an MRI scheduled and put Caroline under sleepy gas before doing an IV for anesthesia and the pediatric anesthesiologist could not get a vein with Caroline. She was under 45 min and 9 unsuccessful pokes. We had to go thru recovery even though the MRI was never performed. Two hours later we came back to our room and met with a GI doctor - finally. Caroline really has not gained weight and my info about 6.11 was wrong. We only weigh 6.8 our original weight that we checked in at even with a feeding tube. So we are having an upper GI test tomorrow and a G- tube surgery on Thursday at 12 noon. This is the best thing for her. However we will have to come back in 3 months for a follow up surgery with her tube. Cam is in and out this week and will miss her procedure. Carley will be cared for by her Nana and her Mimi. She is doing fairly well - she has been to see me here and eats in the cafeteria with me.
After we gave tylenol to Caroline she went back to the treatment room to try again for a regular IV with a special IV team from the NICU and PICU. However after 4 more pokes and a small haircut they were unsuccessful and we still have no IV. So we will do all tube feeds tonight and rest. Tomorrow she will have one more big poke and hopefully we will be set for surgery. Without an IV there is no means to out her to sleep and wake her up. The MRI is on the back burner and we will come back at a later time after the g- tube is inserted for an out patient MRI.
She is also now on oxygen to help maintain O2 levels during a deep sleep. I slept two hours last night and hope we can sleep better tonight. She is resting and is still holding her own and giving us smiles. I can not believe how strong such a little girl is!!! I wonder what amazing plans God has in store for her and what a privilege to be her mom and care for her. Pray for peace even with not too many answers. Resting in Him. I am grateful for all your prayers and encouraging words.
After we gave tylenol to Caroline she went back to the treatment room to try again for a regular IV with a special IV team from the NICU and PICU. However after 4 more pokes and a small haircut they were unsuccessful and we still have no IV. So we will do all tube feeds tonight and rest. Tomorrow she will have one more big poke and hopefully we will be set for surgery. Without an IV there is no means to out her to sleep and wake her up. The MRI is on the back burner and we will come back at a later time after the g- tube is inserted for an out patient MRI.
She is also now on oxygen to help maintain O2 levels during a deep sleep. I slept two hours last night and hope we can sleep better tonight. She is resting and is still holding her own and giving us smiles. I can not believe how strong such a little girl is!!! I wonder what amazing plans God has in store for her and what a privilege to be her mom and care for her. Pray for peace even with not too many answers. Resting in Him. I am grateful for all your prayers and encouraging words.
Sunday, October 7, 2007
NG Tube
Caroline is sleeping soundly. We have had a feeding tube through her nose since Fri afternoon from about 4pm. In the last 24 hours she has consumed 14.5 ounces and has already gained weight with the tube. She weighs 6.11oz - yeah!!!!! She has times where her oxygen levels drop - and the nurses are closley monitoring this. She definitely breathes better on her tummy.Cam leaves today for 7 days and we are playing it all by ear with people coming and going and keeping Carley. My mom should be coming soon.We are going to be here probably another week so it seems. It is better to be here to be weighed and monitored while we have people to help us.
They have told us we will go home with a sleeping monitor. We will NOT go home with this ng tube. I am speculating we are to gain weight, assess, and end up with a g-tube in the belly. This is all my best guess - because the news changes around here daily. Thank you for phone calls and for continued prayer.
They have told us we will go home with a sleeping monitor. We will NOT go home with this ng tube. I am speculating we are to gain weight, assess, and end up with a g-tube in the belly. This is all my best guess - because the news changes around here daily. Thank you for phone calls and for continued prayer.
Wednesday, October 3, 2007
Hospital Life
We are here again. We are pleased to be in the hospital for testing and observation for feeding and any other needs Caroline may need. This is a long and tedious process, but I am realizing the doctors are trying to do what is best for Caroline. We were expected to do all of this next week, but after only gaining 2.8oz. in 11 days.......there is an urgent need for attention. Carley is with Aunt Jenny and Stepehen. Nana will be here today to care for Carley the remainder of this week. Right now we are going to be here a while - they do not know what the definition of a while will mean for us. Caroline is peaceful and strong through all of her tests. I am at peace and rest because of God's love and strength he gives me through all of you. I appreciate the calls and continued prayer as we seek answers for this special baby, Please pray for complete wisdom and discernment for all the doctors involved.
Yesterday they placed Carolines IV and started fluids. we continued to feed her every three hours. She had x-rays of her spine and forearms and the results seem normal from those x-rays. They drew labs last night and sent those off and they have been returned and all blood sugars are normal as well as everything else. This is good and bad because it does not point us to eating troubles. We will see a nutritionist and genetics doctors tomorrow. Our coordinating doctor is from Scotland his name is Dr. Tynan. He is very patient and giving this a methodical approach. All of our nurses have been wonderful. We had two visitors from church today.
Cameron and I watched a movie and are enjoying our cafeteria dates together.
This am we had a modified swallow study done with a speech therapist and radiologist to determine any flow problems or sucking efforts that Caroline is having. All came back normal, but eating is more work for her than most babies. So God sent us Kyra, speech therapist with a special bottle with special nipples that we are using now and it is really helping her to not work so hard at eating. We are not concentrating on volume while we are learning what the problem could be. Currently we are doing a 24 hour test called a multichannel test that looks at many things. We are looking for apnea and breathing problems and oxygen levels and respiration levels. She is hooked to many monitors , but does not seem to mind it. She has two oxygen monitors and heart monitors. There is a machine monitoring sleep cycles and eating cycles as well as movement cycles. She has a tube down her nose to measure her own oxygen. She has another small tube down her nose and throat into her esophagus that measures acid reflux as well as reflux. We will have results back on Friday from this multichannel test. We also will have GI tests run probably on Friday. I do not anticipate being home anytime soon. I am reminded of the scripture passage in Isaiah that says, "He will keep in perfect peace whose mind is stayed on Thee...." We were reminded we may not have complete answers at the end of this week and that can be frustrating at times. We are taking one day at a time as well as the doctors and who to turn to next after the tests have pointed us in a new direction. Caroline will probably get a tube, but they are making her prove herself and offering different channels for her to feed and grow on her own at this time.
Yesterday they placed Carolines IV and started fluids. we continued to feed her every three hours. She had x-rays of her spine and forearms and the results seem normal from those x-rays. They drew labs last night and sent those off and they have been returned and all blood sugars are normal as well as everything else. This is good and bad because it does not point us to eating troubles. We will see a nutritionist and genetics doctors tomorrow. Our coordinating doctor is from Scotland his name is Dr. Tynan. He is very patient and giving this a methodical approach. All of our nurses have been wonderful. We had two visitors from church today.
Cameron and I watched a movie and are enjoying our cafeteria dates together.
This am we had a modified swallow study done with a speech therapist and radiologist to determine any flow problems or sucking efforts that Caroline is having. All came back normal, but eating is more work for her than most babies. So God sent us Kyra, speech therapist with a special bottle with special nipples that we are using now and it is really helping her to not work so hard at eating. We are not concentrating on volume while we are learning what the problem could be. Currently we are doing a 24 hour test called a multichannel test that looks at many things. We are looking for apnea and breathing problems and oxygen levels and respiration levels. She is hooked to many monitors , but does not seem to mind it. She has two oxygen monitors and heart monitors. There is a machine monitoring sleep cycles and eating cycles as well as movement cycles. She has a tube down her nose to measure her own oxygen. She has another small tube down her nose and throat into her esophagus that measures acid reflux as well as reflux. We will have results back on Friday from this multichannel test. We also will have GI tests run probably on Friday. I do not anticipate being home anytime soon. I am reminded of the scripture passage in Isaiah that says, "He will keep in perfect peace whose mind is stayed on Thee...." We were reminded we may not have complete answers at the end of this week and that can be frustrating at times. We are taking one day at a time as well as the doctors and who to turn to next after the tests have pointed us in a new direction. Caroline will probably get a tube, but they are making her prove herself and offering different channels for her to feed and grow on her own at this time.
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