Friday, August 28, 2009

All About Callie

Callie Elizabeth was born on February 11, 2009 at 11:17am at St. Joseph Hospital in Marshfield. She weighed 4lb 13oz and was 17in long, what a little doll! Mom was only 37 weeks, but defiantly ready to meet her precious daughter. Since she had a c-section prior, Callie was also born by c-section after a night of laboring at home.

At birth Callie was also not able to breath through her nose just like big brother Zak. She was diagnosed immediately with having choanal atresia, the nasal passages did not develop and she would need surgery to correct it. She was admitted directly to the NICU. At 6 days old the surgery was a success; the doctors drilled a new airway and used plastic stints to keep the passage open so it could heal. For three months she had stints in her nose to keep the airway open and allow her to breathe freely. On May 14, 2009 Callie had the stints removed and has been breathing wonderfully since (with a bit of suctioning still). We also learned at birth that Callie had a heart Murmur that the doctors will continue to monitor - several days later she was diagnosed as having Pulmonary stenosis, again just like her big brother. It got slightly worse around 2 months old, at 5 months old it was significantly worse. (about a 60% murmur). The doctors continue to follow her closely. For the first time at 12 months old we were told her heart stabilized at a grade 70 murmur. We pray it will now get better just as Zak's did. Only time will tell.
During Callie's newborn screen she was also diagnosed with a Thyroid disorder. He thyroid is slightly smaller than it should be. She takes a daily medication to monitor this and we continue to be monitored by the doctors.

Callie has also had some feeding issues along the way. She likes to eat, however it does take her a while to get a bottle down. The issue with this is it takes her so long to eat she is actually burning more calories than she is taking in. She is on a very strict feeding regiment now to hopefully allow her to gain weight. Finally at 8 months old we decided she needed a feeding tube to help with the growth - we just needed to make some decisions. Since Callie was also diagnosed with severe GERD at 2 weeks old, which basically meant she had really bad acid reflux or heart burn, she was treated immediately with medication. Although she still spits up once and a while, it seems to be working. She had an endoscopy (a look at her esophagus with a camera) which is normal at a glance, but does show some mild aggravation. We decided she should have the same surgery as Zak where they wrap the stomach around the esophagus to prevent the reflux and place the feeding tube at the same time. Callie showed a significant gain in weight, but not a significant change in length. We will continue to monitor this. At age 2 a decision can be made if she needs growth hormone.

When Callie was 4 months old she had some internal bleeding. She was hospitalized for 4 days to run tests and evaluate. Although we never got an answer we are thinking a bone chip from her nose may have gotten swallowed. This healed on its own. She was anemic for a bit after, but continues to show improvement.

At 5 months old Callie had eye surgery for Ptosis, a condition in which under-developed muscles do not allow her eye lids to raise properly. The surgery connected her eye brow with her eye lids so now she has control over the lids and can see much better. It was a very minor surgery. Callie has also been monitored for additional fluid in the brain. After an MRI it was determined she was need to have a third ventriculostomy to help the fluid drain. This surgeries were done at the same time. The brain surgery was given a 50% success rate. During the surgery she ended up having an external drain put in since there was blood in the fluid. She spent a few nights in the PICU. Callie recently had an ultrasound for her follow up and there is concern about the fluid in her brain. They did another MRI to determine if the surgery was a success or if she would need a shunt. Unfortunately the surgery did not work and Callie needed to have a programmable shunt placed. Thankfully she has been doing great!

Callie has an unbalanced Translocation (46, XX, der(3)t(3;6)(p24.2;p21.1) which we continue to learn about. Doctors believe this will cause Callie to have some mental and physical disabilities, but we are determined to give her the care and education she needs. To date we have only learned of one other family in the world with the similar unbalanced translocation which we have been able to speak with a few times.

Callie is a joy to be around. She loves her attention. She is a feisty little girl.. we know who is going to be running the house! Big Brother Zak likes to check her out and pull on her Arms and legs. We are so thankful to have another little miracle in our life.

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