Happy days

Caroline has been introduced to Baby Einstein and loves the Little Language Nursery video. We limit tv watching to this short video. Some people do not agree with infants watching tv, but she is bored and is on her back 12-18 hours a day due to monitors and feeding pump attachments. She smile and laughs and is also practicing eye tracking with these videos.
Caroline weighs 7.4 today - yeah!!! We have three dr appt next week, Mon., Tues., and Wed.
My days are not my own they are filled with counting cc's and dr appts and now in home visits too. We are home alot! They are also filled with playing with Caroline watching her smile and laugh and gain physical strength. Carley and I read books every day before nap, play with stickers and finger paint and give bubble baths. God continues to answer prayer. Keep sending your requests before His throne of grace. I seriously have though about changing her middle name on her birth certificate to GRACE. His grace is sufficient for me.
I have had a burden and insight about Caroline's vaccines. I have just begun to research and I feel without a full diagnosis and a healthy brain I am going to opt out of some of Caroline's vaccines. Be in prayer for my wisdom discernment and that the dr will not give me a hard time.
She has had 4 shots and is scheduled for 4 more in two weeks. However, I am going to be picky and choosy right now. So we will not be getting 4, may be 2 next time. Just pray Cameron and I will make the wisest decisions possible for Carolina's future development. We have no indication of future speech development whether that will be delayed or on target. We do have a healthy brain and healthy social interactions - I want to do all we can to protect and preserve that.

Learning together

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.

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.

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.

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.

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.

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.

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.

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.

Pictures of Caroline in the Hospital

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.

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.