Caroline is 6.15. She is getting continuous feeds on her pump at night from 8p-8a. This is equal to four bottles. In the day time the doctor ordered 3 bottles feeds. Caroline is telling us she wants more milk from her bottle. She has added two bottle feeds and is increasing her milk from 16 oz to 17 oz. in a 24 hour time period. We are excited because she is telling us and showing us she is hungry for milk from a bottle!!!The challenging part is deciding how to give her the rest of her milk. She can only take about 15 cc at a time through her tube with a syringe. If it is more than that we have to put it through her pump slowly. So all of this is time consuming and making the best decision for what we have planned at the moment.
I want to say hello to all of our visitors and supporters who check on us daily. Many of you I do not know but I appreciate your interest in our family and all the prayers you may offer up on our behalf. Cameron and I took Carley to Sesame Live yesterday. It was a good time. I also scrapbooked last night for about 5 hours. Cameron went fishing for a couple of hours too. We had a fun day and were able to get away. Caroline has been home alot and will continue to bed home when we have extra hands. It is easier and safer for her at this time. We welcome visitors with open arms as we are home bound more often. Thanks be to God for a positive MRI and many positive tests while we were in the hospital.
Sunday, October 21, 2007
Wednesday, October 17, 2007
Home Sweet Home
So sorry to be delayed in our postings. We have been home since Monday night. Caroline and I are getting much needed night sleep since we have a feeding pump which allows Caroline to get milk even while she sleeps and even if she is tired of drinking from a bottle. We do bottle feed about four times a day. We are all adjusting to all of Caroline's new accessories she has acquired. We have a monitor in a bag that comes up and down stairs everyday as well as her feeding pump and IV pole to house the pump. We have replaced old bottles now with feeding syringes and pump bags that hold formula. We are wasting alot less formula and we are blessed that insurance has covered all formula, feeding pump bags, feeding pump, and apnea monitor at 90%. My mom is here for about 2 more weeks to help me get settled with new doctors appt. and a new routine with Carley and Caroline. Cameron is home now and will continue to travel through the first of November. God continues to show his love through our friends and family.
My sister in law blessed us with a wonderful home cooked meal tonight. My friend Noelle came to see me and spent the day with me. I am blessed beyond measure even when times are tough.
We welcome any and all visitors who can wash hands and give hugs. I miss seeing my friends and going to church. I hope we are able to resume a normal life schedule soon.
My sister in law blessed us with a wonderful home cooked meal tonight. My friend Noelle came to see me and spent the day with me. I am blessed beyond measure even when times are tough.
We welcome any and all visitors who can wash hands and give hugs. I miss seeing my friends and going to church. I hope we are able to resume a normal life schedule soon.
Sunday, October 14, 2007
Not Yet Home
Please pray for me as I am overwhelmed with all of our new things I am learning and having to do with Caroline. I am tired and still tweaking her feeding issues. Apparently some children do feed from a bottle and you are able to tube feed measured amounts straight into a tube. However that is not working with little Caroline. It is too much too soon and too much milk too fast. Do not ever take for granted how your child and baby eat so easily from a bottle or breast this is way complicated and detailed on a daily basis of measuring and calculating constantly. That will not end as well as Caroline's complex feeding needs. Yesterday and today have been trial by error with feeding. We were going home Monday, but now Tuesday at lunch time is looking more realistic. We are going to have to have a feeding pump, a portable one a that if we are ever to leave our home. We also will have a portable sleeping monitor to monitor respiration and heart beat. This mainly is too alert us of any possible SIDS moments - she is apparently a high risk for this. She does not have heart problems or oxygen problems at this point so I am hoping that monitor will only be for our night time sleep and not for our trips to Target. Today was a better day. We had lots of happy visitors. Mimi, Aunt Kelly ,Carley and Daddy came this evening. Mr. Don and Mrs. Sharon came today all the way from Tennessee.
We will more than likely be coming home Tuesday early afternoon all things considered.
We will more than likely be coming home Tuesday early afternoon all things considered.
Saturday, October 13, 2007
Going Home Soon
Caroline and I will be coming home mid morning on Monday. I have a lot do today and tomorrow. I will have to learn how to use a feeding pump and a sleeping monitor and a CPR video. I also think the GI doctor will look at her on Mon and check her tube. She is sleeping so good and has maintained her O2 levels. We will not have to take oxygen home now! Praise the Lord. We will come back in Jan for a part two surgery on her gtube. Right now it is rather a large tube for such a small baby. In Jan we will get a much shorter tube and a mickey button. Please pray Caroline will gain weight before we leave. Much Love to all of you.
Friday, October 12, 2007
Skin Punch
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.
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.
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.
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