One more Doctor

Hello to all. Caroline is now 4.12 and we are pleased with her weight gain. She had a marathon sleeping day yesterday. I think she may have only been awake two hours. Then she stayed awake 2:30am - 4:30am last night and this am 6:30 - 8:00am so we are back on track I hope.
We went to get another referral yesterday from her pediatrician to check on possible reflux. She does not spit up a lot, but has a strange weird cough at different times during feedings. It is scary if you are the one who she decides she needs to spit up through her nose and mouth at the same time. It can be scary. But we are hoping it is something she may outgrow. We go to the hip doctor Thursday this week. And next week to the pediatrician on Tuesday and on Thursday to the pulminologist to check on coughing and the possible reflux. The new request is that Caroline does not have a blockage in her trachea etc....

Who is burning the midnight oil?

Caroline has gained yet another ounce. Today she weighs in at 4.8. She is till sleeping and eating good. Yesterday she stayed awake nearly all day. Today she is playing catch up. However, I know many of you guys are still praying for her little body to develop and heal. Today she has kept her arms down and not folded into her body. This is a big step for me. She can move her hands and arms, but only does so when she feels like it. Please pray for her movements to be more fluid and for her body as it continues to grow. Thank you so much for the time that some of you have given to us through prayer support. We are going to Sanger Cardiology on Aug 23 for our Eco Cardiogram. We are also going to Morehead Imaging Ctr on Aug 9 for a hip ultrasound . Pray for healthy results in both of those appt.

Continued growth

Caroline went to her pediatric appt today. She has gained 5 oz - we are thrilled!!!!
We will go to Sanger cardiology to check on a small VSD in her heart - but are expecting it to close on its own. Our appt will be 1-2 months away. We will also be referred to the Carl Watkins Early Intervention Center for physical and occupational therapy after she gets bigger!!!! It is run by the government so our tax dollars are at work for us! We will get care for Caroline at no extra charge and the best news of all the therapist come to your house from 0-3 yrs. So Little Carley will not always have to be with a sitter or at extra MMO. So This is another praise!!!!
I also was released from the OB with my incision today. I will return Aug 23 for my regular post partum check. So I am feeling stronger each day and I got to drive the girls to the pediatric office today.

Genetics visit

Today was a long appt. We went to see Dr. Spence. Overall it was a good visit on what we know. I wish I had more clear answers for us and everyone else. Caroline's genetic blood work, or fish study all came back negative. These are great reports and rule out lots of things for us. Do we know a name for her existing abnormalities all clustered together? Right now we do not have a complete diagnosis. We will see Dr. Spence in 3 mo. and possibly start some physical therapy to work on our low muscle tone. We need to concentrate on sleeping, eating, and gaining weight. We are told to treat her as a normal baby until we find reason to not treat her normally. So by faith, Cameron and I are expecting milestones and normal development. She may always be a petite little thing and may not reach her milestones the same time as Carley, but as long as she progresses and reaches them we are in good hands. We did more blood work today to retest her red and white blood cell count. her red count was low, but not abnormally low. Dr. Spence just wants to see if her levels have risen since the NICU stay. We are also waiting to hear from pathology about the placenta size in utero. There is a metabolic blood test for Caroline that we have not received as of yet either. So we have things to continually pray about. It was disappointing to not have a complete diagnosis, yet encouraging that we are able to bring this before God who does have the answers and a complete diagnosis. I also feel a diagnosis may limit our expectations for Caroline. So as we learn more each day we will keep you all up to speed. I am content to take all this one day at a time and trust in the Lord with all of the unknowns. We do not know what Caroline will be able to do in the future, but we also have not been given anything at this time to limit what Caroline may be able to do.

Sweet Caroline Neil Diamond

Below is a link to the Neil Diamond Song Sweet Caroline. We have been playing this song all day.

Cameron

http://youtube.com/watch?v=OqDTlwq532M

Today is a new day

Caroline is eating more and still sleeping well. This weekend will hopefully allow us to get some extra rest and down time. Our schedule is pretty packed. We average a dr appt 4 days a week and some days two appt. We Have our big genetics appt on Monday. This will be a hard day for Cameron and I as we receive a diagnosis for sweet Caroline. Pray that we are able to care for her and receive whatever the dr tells us. I truly covet all of your prayers at this time. We need them daily. I went to my dr and now have a bladder infection. Pray for me to feel better every day. My pain is more manageable now, but I still cannot do a whole lot around here other than feed and hold little Caroline. We will have three weight checks next week. Her goal is to gain 3-5 ounces a week or an ounce a day. We do not know what the future holds for our family and Caroline. We know many permanent changes will have to take place. But we know who holds the future in His Hands.

Caroline's Visitors

Our Yard Stork


Carley wanted Mimi to feed her baby Caroline also!

Nana (Sue) Papa (James)

Ellen our next door neighbor


Kim and her sister Kelly (Aunt Kelly)

Aunt Kelly, Uncle Matt, Carley, Kim and Caroline

Uncle Matt and Caroline

Aunt Kelly and Uncle Matt

Kim, Papa Frank, Carley, Caroline