Mickey Button

Caroline did great with her procedure today. She is asleep with a new feeding attachment and is still happy. She does not seem to have much pain, but does have a sore throat. She weighs 9.13 today. Almost 10 pounds. We are reaching double digits. Tomorrow we will get the apnea monitor down loaded. We may not have to keep that too much longer. Praise the Lord for another successful surgery.

Surgery Day

We will be off for CMC hospital at 6:30 am. Caroline's surgery is at 9am. Please pray for a safe surgery and a smooth recovery. I am always anxious when she is put to sleep with so many unknowns. She is so pleasant to hold and talk to with her expressive sunny disposition. I have enjoyed our holidays and am looking forward to being home after surgery. We are not expected to stay overnight. Thank you for your messages and notes on the blog. I appreciate your constant encouragement and prayers. Please add the sale of our home to your requests so we can move forward together as a family. We will post an update after surgery for the new mickey button. Happy New Year!

Big changes in 2008

We are moving to Jacksonville, Florida. We will really live in St. Augustine. Cameron has accepted a new job position as recruiting manger for a company called AmeriForce. He is excited about all the new opportunities that lie ahead. We will miss Traveler's and all the friends we have met along the way of our travels. This is obviously a stressful and very busy time for us with the house on the market, Christmas and Caroline's upcoming surgery. Cam starts his new job on Jan.7. There is never a dull moment literally on the Abbott household. We are always up to something. The girls and I will remain in Charlotte until the house sells and continue with Dr. appt. and Physical Therapy for Caroline. Caroline weighed 9.8 today and will have surgery now on Dec 27. It has been re scheduled per the hospital to have a full crew that day. So we will have everyone we need on board for all to go well. Her procedure is to change her g -tube to a mickey button. It will be easier to change out the feeding tube and button. It is less obvious to the public eye and less likely to be pulled out. I will have to learn a few more tricks, but it will primarily operate the same way.
I fully intended to send out a holiday letter, but this will have to suffice. Carley gave her Binky away to the Binky Fairy last week and it has gone better than expected. You know what is one more source of stress when you are thrown a million curve balls at once? Mommy and Carley have done well with the transition. Naps have been sparse due to the Binky disappearing though. She is three and really looking forward to Christmas. She asked me last week,"What is the trued meaning of Christmas?" I replied, "Jesus." I could not think of a better simpler way to tell her. She is a joy and I wonder what she really understands about all of this manger business. She told me Jesus was born in a manger and the angel told Mary she was going to have a baby. She also told me Jesus was born in "Becklaham." It sis precious. It reminds me of the child like faith we are to have in our lives.
Caroline is so responsive and chatty these days. We are hopeful and blessed. She belly laughs when you sneeze at her and she copies all of your mouth movements. her eyes follow all that goes on around her. She finished three bottles last week all on her own in 25 min record time. She is trying to put pressure on her hands and feet and really wants to push her head toward you when you talk to her. She pulls back form a tummy position at shoulder height. We are working on more tummy time and raising her head from a tummy position on a flat surface. She has reached all social/language milestones at this point for a 5 month old. She is delayed in rolling, sitting, and raising her head from a tummy position.
We do not have new doctor appt, but will see an orthopedist in the future in Florida. We will have to set up therapies as well for Caroline to continue. We are thrilled at her progress and continue to thank God for His faithfulness. Thank you to all our family and friends who pray for our daily strength. Happy New Year to each of you!!!!!

Merry Christmas

Happy Holidays to all of you. We have been very busy. We are getting all of our gifts wrapped and our lights are all set for outside. Carley is so excited this year too. She is now three today! We had a great time at her Backyardigans birthday party. Two earth angels gave Carley's party. It was great fun to see her smile and have all of our friends and family near. Caroline and Carley both go to the doctor today. It will be a long morning and very exhausting for me. Caroline will get her second RSV - synagis shot. Out home health nurse also weighed her today and surveyed her developmental and physical milestones. She is really responsive and on track for most things - we are thrilled! She can not roll over yet and she is still struggling to hold her head up from a tummy position. I sent out pictures yesterday for Christmas and hope all of you will receive them soon. I have not posted in a while, but we are having some progress. Caroline now takes 70 cc for volume per feeding. She is still gaining at a steady rate too! She weighed 9.6 today! It is nice to see those numbers reversed. I am physically tired and worn out, but things have been running smoothly thus far. Our appointments have slowed some. We will have PT Dec 19 and surgery for our mickey button on Dec. 24 at 9am. I would love to hear from you all too!

Dr. H

We spent Thanksgiving in Charleston, SC. Caroline did great. We rented a minivan and enjoyed spending time with my sister, brother - in - law and mom and dad. Carley had a ball with all the dogs too. Caroline is close to nine pounds and is still eating and sleeping good. We finally got an appt with the NY doctor to see Caroline concerning mainly her growth delays at this time. We will go to NY March 14. We will also spend time that weekend in NJ with my grandparents and other realtives who will want to see Caroline. We are happy about this appt and hope it will hold more answers for us. Caroline's mickey button surgery has also been scheduled for Dec. 24. We will spend Christmas Eve day in the hospital and hopefully that will be it. We are expecting great things for Caroline because we serve a great God! Please keep us in your prayers.

Story Time With Daddy

Carley and I have story time every night before she goes to bed. Tonight Caroline wanted to be included. So the three of us had story time tonight.

Caroline resting on her exercise mat.

Pictures

Caroline has learned to suck her thumb!

Debbie Sykes from Texas came to visit on 11-17-07

Carley is into dress ups now. Today she was a ladybug!

Pictures of Caroline's fingerprints and the second picture shows the actual size of her hands and feet.

Professional Pictures of Caroline.

Caroline's all Smiles!

Eight Pounds!

Caroline is 8.6 oz. today. Caroline had a synagis shot today as well as a rota virus vaccine orally. These are new vaccines and were not available when Carley was little. It is scary, but I would not let them give her any other vaccines today and they really did not agree with me. I came home and gave them both tylenol and put them to bed. It was a rough morning to get ready and go to the doctor. Carley got a flu shot too! Cameron had to come help at the end of the appt. We were there for two hours!! I will never take them both together again. It was completely rushed and I am still stressed from making decisions with little or no information and support with what I am up against. My pediatrician does not know or understand Caroline's diagnosis. To her credit neither do I. She thought it was related to downs. I said this is 2/3 of a set of chromosomes not one or two extra or deleted chromosomes. It was a morning like this, " No one should have to do this or feed their child this way." In the meantime I was rushing out the door, changing two diapers, Caroline would not take all of her bottle. I went to grab the syringe and fill it with milk. It popped and bruised my finger. It has happened three times and all of the times I just want to gasp. We made it to the dr. only to wait and be there for two hours. I am beat. Please pray for continued strength. It is hard to feel hopeful and positive everyday when no one else is in my shoes day in and day out.

Speech Evaluation

Yesterday Caroline had a speech evaluation with a speech therapist. She was very encouraging to me. She watched Caroline feed from her bottle and checked to see if she had a strong suck on her bottle. She watched Caroline suck her thumb, track with her eyes, respond to sound, and coo. She said all of her language and social and cognitive development is on track for a four month old. She also told me to not let the internet and other children limit what Caroline can do!Caroline doe snot need any feeding or speech therapy at this time. We will re-evaluate in 3 more months. Today Caroline was weighed by her home health nurse weighing in at 8.3oz. I never thought I would be able to type eight pounds. She is so sweet. We went to the mall today and took Carley to build a Rudolph. It was so much fun. Caroline did great and Carley had a blast!!!!

Mosaic Triploidy

I have been able to do more research and talk with some families who have theses children. I really wish I had all avaliable information and was able to explain it to you. I am hopeful when I look at Caroline and see all of her progress, yet I want to be honest and reasonable with this diagnosis. From what I understand there are 25 confirmed living cases. I am in touch with families of a 2 yr old, 8 yr old, and 18 yrs. old. these children have mental retardation, dental issues, learning difficulties, poor speech, urinary and kidney problems. Thier hands and feet are similar to Caroline's. She has mild webbibg in her hands and more in her feet, primarily her toes.Caroline has all her normal 46 chromosomes plus 2/3 of these chromosomes have an extra copy. So She has three sets of chromosomes for 2/3 of her regular set. I do not know the exact matches, but do lan to know. I have not received the complete genetic report. It takes months.
I do have about three doctors that I would like to go see in the near future. They may be able to help me understand what this diagnosis means for us. There is a geneticist at Dupont. Dr. Harbison is in NY for endocrinology, and another Geneticist called Dr. Niche.
Caroline is now reaching for objects, cooing loudly and responding back to us. She also can support her head and hold it up briefly while her back is supported.

Hope for today...Strength for tomorrow

I am at a loss. It is difficult for me to post this info, but necessary. Please pray for me as I struggle to grasp the new information given to us Wed. from our geneticist. Caroline received a confirmed diagnosis on Wed. We are not expecting this. According to the skin punch test Caroline has a very rare chromosome disorder called: mosaic triploidy.
There is some info on the Internet and lots of scientific journals that are way beyond my capacity of understanding. I was disappointed because RSS has more positive information and real live families to connect with. I have no definite info and no people yet to talk to about this. Most docs have never heard of it. We are still going to see Dr. Harbison in NY to discuss other endocrine issues as Caroline's growth is still a part of this new syndrome.
Do not confuse this with full triploidy - it is incompatible with life. All babies usually die in the womb or shortly after delivery with full triploidy. Basically, Caroline's condition happened at conception. Caroline has three copies of some of her chromosomes rather than just two like the rest of us. She is relatively healthy And does not have some of the major health issues that some of these babies have. There is no confirmed information concerning her life expectancy, physical dev. and brain development for the future. We are still up against a lot of unknowns. IN some ways I feel like it does not even matter that we know what is wrong. It does not change Caroline or make her better. It also does not change our treatment plan. We will continue with all therapies, hope for the best, and pray for constructive information, research , and guidance. Please remember us in prayer. Caroline is happy and weighs 7.14. There is a whole new understanding about Caroline being "fearfully and wonderfully made!"

More News!

Our days have been filled with more appt. this week: neurology, endocrinology, GI, and home health nurse. Today we went to endocrinology. Carolione is blowing spit bubbles and working on moving her head from side to side from a tummy position. This is a true struggle due to lack of muscle tone. We have more PT on Monday and back to see Dr. Spence on Wed. for results of our skin punch chromosome test and hopefully more info concerning Caroline's diagnosis.
Caroline is 7lbs 10 oz. today! So big!!! We are so glad and can tell a physical difference already!
Mimi left to go home today and we will make our first car trip to Greenville, SC for Papa's birthday weekend. We also took Carley and Caroline to her fall festival last night. Carley was a pirate and Caroline was just her cute little self. Caroline giggles and laughs and is quite responsive. We take joy in these milestones and do not take them lightly.
We met with Dr. Parker today. We loved him! He was a very good listener paid me a very high compliment. He asked me if I was a PH D, nurse, or doctor. I smiled and humbly said, "Just a mom who has read, researched and listened to many doctors! His response was, "You are not just a mom and a teacher and I am so glad you are well educated." This is worth all the hours of research and heartache. Back to Caroline's diagnosis. I have researched many things, but have spent a lot of time with moms on a list serve for children that have a specific genetic growth syndrome called Russell Silver Syndrome. Most docs are not all familiar with this, but the specialists at least know of it. So for about two months I have read about treatments and things to do with babies like Caroline, but my hands are tied after I have been exposed to the knowledge. There is a well known doctor who specializes and treats kids with RSS and knows all about growth problems in babies. Her name is Dr. Harbison in NY. I have read wonderful stories about her and the families she has helped. Today was a huge answer to prayer. Dr. Parker knows all about her and says I am onto something and believes I could have possibly diagnosed Caroline myself. She has too many commonalities. It is complex, but oh so interesting to me. He took pics of Caroline and sent them to Dr. H in an e-mail and is referring us for an appt.
So maybe in Jan. we may be taking a plane trip with Caroline to NY. There is much insight and medical help with a diagnosis, especially to help Caroline reach her full and possible potential. I rest in Him for my hope and my strength. Love to you all.

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.

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.

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.

Caroline Smiles

Here are some pictures of Caroline smiling!

A bend in the road

Well I am feeling all of the past nine weeks today.
Me - I am sleep deprived, but pain free at this point. I still have an extra section or pocket of fluid or maybe even fat on my hip that I am going to my family care physician for a physical and another blood test to check my liver enzymes. They were a little elevated at my last OB check. He does not think this is serious and wants me to get on an exercise program and possible physical therapy. I sorta took this with a grain of salt because I have not exactly been sitting on my tail the past 7 weeks. I am feeling better, but pray I will get answers on my hip situation.
Caroline - We had two appt today. We went to peds today for weight a weight check and four shots. It was a bit emotional for me. She cried and lost her breath while the shots were given. She has not eaten well this past week, but I was hopeful. I was also shocked to see her weight was only 6.2 today after 1 full week. I am discouraged to say the least, but need to remember this is part of who Caroline is and her underlying genetic condition that we still are awaiting a firm diagnosis. I am trying to get to the geneticist before NOV 7 - but I seem to be getting the cold shoulder about all my ideas and urgency for Caroline to be seen.
We went to have a renal ultrasound today of her kidneys - it still needs an official reading, but the tech said they appeared normal - yeah!
Caroline cooed and smiled at the pediatrician today. She was thrilled and told me she has a good brain and seems quite social. This was the only thing that warmed my heart today. I have to now wake her every three hours in the night and keep to the two hours in the day time. It is completely exhausting honestly. Than to have little weight gain - I am beginning to think what is the point - let me rest. Then Dr. Downing said if she doe snot take 16-18 0z daily we will discuss a feeding tube in three weeks - so I am just bummed today! What the Dr do not know is that I am feeding , waking and preparing bottles and this child is doing good to eat 16 0z a day!
18 is not in the works! He has only had 17 oz twice in the past two weeks and last week she ate only 14-15 oz per day so.....................
Pray for my strength and Caroline's eating and growth. We will also need a suck/swallow study done by a speech therapist . I am not sure what this determines. I already know the suck reflex is weak due to low tone issues. We have a PT eval on Mon. and pulminologist recheck on Thursday. Oct 29 is neurology and I will schedule endocrinology in mid to late Nov. after I speak to Dr. Spence. I really hope we get a diagnosis because lots of things can not go forward with insurance coverage and therapy without a diagnosis.

Getting Well

Cam and Carley both now have chest colds. Caroline and I are staying away whenever possible. I am keeping the baby in two separate rooms during the day. Caroline will get 4 shots and a weight check on Thursday. That afternoon we will also have an ultrasound of her kidneys. Our appt to genetics is Nov 7. Our newest appt to the neurologist is on Oct. 29. Be in prayer for these next doctor's visits. Carley is feeling better, but we stayed home from MMO out today and we also stayed home from swim lessons last night. We hope to be back on our normal routine by Thursday. Keeping the house clean and sanitized may be more work than taking care of the girls. We change the sheets almost daily and wash everything to keep germs low. I am very tired, but feeling love and support from all of you. My mom will be here Thursday morning and will be staying a week. This will be helpful to run Carley to school and to keep up with new appt.
Oh - one more, we will have our physical therapy evaluation on Sept 17.Caroline was 5.15 oz. last week. I hope for even more weight gain in Thursday.

Carley to ER

Ok - we are sort of going crazy!!! Carley and Cam went to ER at 4am. Carley has croup and we went to her Dr, but her breathing got worse in the night time. She was given a steroid, Motrin and breathing treatments. She will be home with Cameron by 6am. Cam is canceling his business trip to care for Carley. We have been advised, by ER Dr. to get Caroline out of the house for several days - this is real convenient for me you see. Anyway - we are going to my Sister in laws house in Matthews. They are at CMC with their new baby. They will be home Fri . So I may look for a new home to invade, but maybe Carley will be better. Caroline cannot get RSV with her body being so little. So please pray for us and feel free to call me on my cell as I will be away from my home and away from Cameron and Carley.

Kim's dr appt.

Kim went to the dr. They do not think it is serious, however, they are not sure what the swelling is. Possibly just from surgery and will get better with time. we are still waiting to get results from the urine and blood tests. Kim is resting when the girls rest, and doing better. I am so sorry to my friends who I have not called. I took Carley to doctor today and it is Caroline's turn tomorrow. Carley has a croup cough and a fever, but seems fine. If my pain persists I will go to my regular doctor to get his opinion. So pray the swelling and pain subside.

Update on Kim

The Cat scan went well and the good news is it is not a hernia. No surgery is needed at this time. Praise The Lord!!! However, tomorrow Kim will see the Dr. and have blood work, urinalysis, and be checked out. The doctor has not physically seen Kim. The question is why the fluid/ bulge on the right hip? Pray we will be able to know the cause of the pain and discomfort so Kim can care for the girls pain free. Thank you very much for some of you who have offered meals. They will be a great help this week!

ER

We are going to ER for a CT scan. My Dr. is ordering it and hopefully we will know something today. It will be later today.

Prayer for Mommy

Oh - boy! Here we go again! I have had pain in the past week and thought it was just sore muscles. Now I am convinced is more. I have called the Dr about three times and I have an appt Tues am. They are thinking it is possible a hernia due to the healing process - or the not so great healing process. If it is I will have yet another surgery. I need to feel better and be able to do what I am supposed to do, but it will be another set back with another surgery. I am trying to get my mom to come tomorrow. I have been taking warm baths and taking some meds to keep the pain low. I have a pain in my right side and some fluid or swelling in my hip area underneath the skin. I get tired nearly after everything I do. Pray this will not be a major deal for us! Thanks - Kim

Casting Crowns Concert 8-31-07

We packed up the girls and met Jenny, Stephen and Cody in the Walmart Parking lot for a free concert by Casting Crowns.

The concert was great and Carley was hilarious! She danced, sang, jumped around, and played with cody. She was watching the people raise their hands and clap so she decided to participate!

Caroline even enjoyed the music.

Enjoy the picture.

Cameron

Heavens Special Child

A meeting was held quite far from earth, It's time again for another birth. Said the angels to the lord above, this special child will need much love. Her progress may seem very slow accomplishments she may not show, and she'll require extra care from the folks she meets way down there. So lets be careful where she's sent, we want her life to be content. Please, Lord, find parents who will do a special job for you. They will not realize right away, the leading roll they're asked to play. But with this child sent from above, comes stronger faith and richer love. And soon they'll know the privilege given in caring for this gift from heaven. The precious charge so meek and mild is heavens very special child.


(we founds this poem on another little girl's website)

Caroline's Video

Nana and Caroline

Sisters!

Well it sure has taken some time for Carley to come around and have interest in her sister. For the last 5 weeks Carley has had no interest in Caroline. Now she has begun to slowly take interest in her.
Every time we see Carley interacting with Caroline we run to grad the camera because this is a rare occurrence. The funny thing is Carley tells us "No Pictures, No Pictures"
Well we were able to squeeze in a few pictures of the girls interacting. Enjoy!

Thumbalina

We have been trying to gain lots of weight from last week. Today Caroline weighed 5.9 lbs. This is great news and we have really been working hard at feeding 2hrs every day and 3 hours in the night. Now that everything vital for life has checked out well. We are back to her size and weight with no definite answers, but we are convinced along with our doctors there is an underlying genetic disorder. We are not alarmed by this because we have wondered all along. She is doing great , but we will have about 4 more specialists in our future. We went to the pediatrician to day to discuss all these factors. We are scheduled to have a renal ultrasound of her kidneys to check there first. Our pediatrician was very open to our questions and thoughts and spent over an hour with us yesterday. She is going to contact our genetics doctor to see if we can get in before November. Pray for continued weight gain. The syndromes our doctors are searching out are quite promising as far as development and Caroline's future. Please keep Caroline in your prayers as we continue our journey along this long and winding road.

God's Grace is Sufficient

We are feeling ever so grateful for God's healing hand. We had our visit to the cardiologist today. Caroline had an EKG and an echo cardiogram as a follow up from her first cardiogram in NICU.
He said her lungs and heart were clear, but wanted to do the other test results. After a few minutes he came back to tell us the reason he could not hear anything is that both the PDA and VSD had completely closed in as little as four weeks. This is wonderful news and can take some babies 6 months to close up. From his standpoint her heart was strong and she would have no breathing problems or developmental problems. We give God the honor and the glory on our road of discovery with little Caroline. Please pray for continued weight gain - she is only 5.3 today. Thank you to our family and friends fro all the prayers, calls, and support. We love you all! I wish I could hug each of you tonight as we are able to sleep peacefully tonight in our own beds at home.

Bronchoscopy went well today!

Well Carolines bronchoscopy went well at CMC main today. Doctor Ashe gave us a good report after the proceedure. It appears Carolines airways are in good shape. Her vocal cords,throat, lungs and airways all looked good. There was a little floppyness in her middle section of her lungs. However it does not appear it will be anything major or require future surgery. Doctor Ashe said that the "floppyness" will be something she will outgrow. We were relieved with this news. More praises...
Caroline has to remain in the hospital overnight because babies of her size must stay in the hospital overnight so that they can monitor her breathing due to the anesthesia.
Kim and I are staying with Caroline tonight. Nana is at home watching Carley.
Sorry there are not tons of details in this posting but I am typing it from my blackberry-Cameron

We will update more details later...

Caroline's Pictures 8-18-07

Bronchoscopy

We went to see Dr. Ashe today, he was a wonderful doctor and very patient with us. He listened to our concerns about Caroline's eating etc....She is eating and swallowing and keeping her food down. However, there are times when she coughs and chokes during some feedings and spits up hours after eating. So we are going to make sure all her airways are clear along with vocal cord development etc... She will have a surgery that will hopefully be outpatient if she does well. We pray for results, we pray for Caroline to not have any complications with this surgery. Her surgery will be at the CMC Main hospital next Wed. It should be a quick procedure and we hope all goes well. Please pray for it to be easy on Caroline and answers for us.

Tipping the charts

Caroline went to her pediatric appt today. She is 5 lbs!!!! We saw Dr. Culpepper today and he was very positive about how Caroline looked and how she was doing so far. We need to be patient and wait for things to happen. We also got our referral to PT so we will begin our process for evaluation at Carl Watkins Center here in Charlotte. We have another appt. on Thursday to check on reflux, but we are pretty sure she does not have that either!!! The doctor could not hear a murmur today in her heart - so her small hole or VSD has most likely closed. Pray that her heart has closed on its own. We will have confirmation at Sanger Cardiology next Thursday.
Thank you for being faithful friends and family members your time and investment in praying for our family is no small thing!!!!

One more notch in our belt

We are so happy to report that Caroline's hip ultrasound is normal!!! No brace. We also received a report on a cranial ultrasound of her brain and it is normal. We rejoice in these reports and are hoping for continued progress and development. Thanks be to God and we offer our gratitude to you and your prayers for our sweet Caroline.

The Cure for Cabin Fever~~ICE CREAM

"Did someone say icecream?"

When I got home from work tonight Kim informed me that she needed to get out of the house. Well since it was over 100 degrees in Charlotte today we decided to go out for ice cream at Maggie Moos. Carley loves the blue (cotton candy) ice cream.

I was nice to get out tonight and enjoy icecream. It helps break up the routine sometimes!

Here are some pictures of our fun night out~