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.
Tuesday, October 9, 2007
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.
Friday, September 28, 2007
Update
Caroline went to visit Dr. Ashe yesterday. He was very pleased with her breathing and lungs and says she remains clear! He gave us meds and tubing for a nebulizer should we need this in the future. She is a very happy and peaceful baby through all of this. ON Thurs she weighed 6.9 and is slowly gaining about 3 oz . per week. We will go back to the pediatrician on Tuesday for a flu shot and a weight check. I also went to the dr concerning my hip. It is still painful everyday, especially at night. I had a complete physical and blood work drawn up on Wed. He will check liver levels and cholesterol everything to make sure I am good, since my liver levels were elevated last month. I will be referred to an orthopedist or get a cortisone shot to help with this hip problem. I will know more next week. Thank you to my new friends and special Sunday School class who have made phone calls, prayed for us and even have sent extra meals. You guys have been wonderful and have made a huge difference in my daily morale as I care for these precious girls.
Friday, September 21, 2007
Answers on the way
We went to visit Dr. Downing today at Providence Pediatrics for our usual weight check. Caroline has not been eating especially well this week or last week. She weighed 6.6 today. It is really emotionally draining and exhausting to feed this little baby around the clock and see virtually no progress. Mimi has been working very hard at feeding Caroline in the nighttime while I sleep. I am getting a lot more sleep this past week. Cam leaves tonight and will be gone 7 days. Mom and Dad will leave Sunday.
Dr. Downing has decided the best thing for Caroline and all of us that feed her that she will be getting a feeding tube the week of Oct. 9th. This will allow me to not feed her every two hours and will allow Caroline a means for growth and nutrition. I am glad we are finally getting down to some real answers and action. The feeding tube will not be fun, but in the end better for us all.
It does not have to be inserted surgically, but we will need to be in the hospital 4-5 days for a suck/ swallow study, gastric emptying study, and several consults with all the major specialists involved. In a round about way this is an answer to prayer. I previously have been arranging for these things on my own and we will have a speech therapist, gastrointestinologist, geneticist, and endocrinologist all available and all watching Caroline that week. This is better than waiting until November. I will learn how to feed Caroline and care for the feeding tube while we are there in the hospital. We will arrange for the moms to help out with Carley and Cam will have to use some vacation time to stay with us if he can. This will be a long journey and I am trusting God for the future that He holds and that He has for our family. Thank you so much for your continued prayer. we will be admitted to the CMC hospital uptown in Charlotte around 10 am on Oct9. Carley and Caroline will receive flu vaccines on Oct 2 during Caroline's regular scheduled weight check.
Dr. Downing has decided the best thing for Caroline and all of us that feed her that she will be getting a feeding tube the week of Oct. 9th. This will allow me to not feed her every two hours and will allow Caroline a means for growth and nutrition. I am glad we are finally getting down to some real answers and action. The feeding tube will not be fun, but in the end better for us all.
It does not have to be inserted surgically, but we will need to be in the hospital 4-5 days for a suck/ swallow study, gastric emptying study, and several consults with all the major specialists involved. In a round about way this is an answer to prayer. I previously have been arranging for these things on my own and we will have a speech therapist, gastrointestinologist, geneticist, and endocrinologist all available and all watching Caroline that week. This is better than waiting until November. I will learn how to feed Caroline and care for the feeding tube while we are there in the hospital. We will arrange for the moms to help out with Carley and Cam will have to use some vacation time to stay with us if he can. This will be a long journey and I am trusting God for the future that He holds and that He has for our family. Thank you so much for your continued prayer. we will be admitted to the CMC hospital uptown in Charlotte around 10 am on Oct9. Carley and Caroline will receive flu vaccines on Oct 2 during Caroline's regular scheduled weight check.
Thursday, September 20, 2007
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