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