Pneumonia

Pickling is done.. all that is left is the beans. Yesterday Kathy, Dan, Chris and Annie pickled Zucchini. We did not know what to do with all of it in the garden and a guy at Annie's work had pickled some and let us try it. It was awesome. Beans are next weekend and then we are done for the year.

Zak is still under the weather. His oxygen stats were a bit low over night so we took him to walk in this morning. Determined he had pneumonia. The doctor looked at the x-rays and thought they looked fine. He still is not eating but thought that was normal as his throat is still swollen. An hour later they called and the radiologist looked at the x-ray and he does have pneumonia in his right lung. Just as we thought. It is pretty bad when we know he has pheumonia! Now we are on antibiotics and nebulizer treatments. Just after we got home from the clinic he started in with diarrhea. Too much pedisure from not eating. We know it will only get worse from the antibiotics.. poor boy.

Callie had a fairly good day, keeping mom and dad busy feeding her. We won't complain though. We always like the uneventful days.

Chris was busy this afternoon. He joined a football draft and was able to pick his players for his team "no idea". He is hoping to have a good year as this is a nice getaway from all the typical days stress.

What a week

Zak had his tonsils and adenoids removed on Tuesday. Thankfully this time we did not have to be at the hospital at 6am. Check in was at 8:15. It was hard watching him play having a great time and having no clue what was about to happen to him. The next time we see him he will be miserable. They also did an echo on his heart at the same time. We should get the results on Monday as our doctor was out of the office. They believe his heart has gotten better, so this was just to confirm. The surgery was about 15 min and the doctor was happy how everything went. Zak stayed 1 night in the PICU for recovery. Chris hung out at the hospital while Annie went to work on Wednesday and Callie's doctors.

Callie had her follow up with the neurosurgeon and an ultrasound on Wednesday. She will be having an MRI to determine if the surgery worked or not since we could not get enough information from the ultrasound. There is only a 50% success rate with her surgery. If it did not work we will be having a shunt put in. Shortly after her appointment she started to fuss and would not calm again. She started to get her twitching episodes. This lasted until bed time when she finally got a little rest. Only to start acting up again on Thursday. We ending up taking her into the clinic and had and EEG done on her brain to see if it was seizures. She had been tested in the past, however since this was actively going on they wanted to test again. Thankfully it was negative, but still no answers. After screaming from 7a-4p she finally calmed about 15 min to start up again. She was on and off in the evening and throughout the night. Finally Friday morning she stated to eat again and was happy and very tired.

On top of all this.. as if it was not enough for one week. We looked at Zak's eye and thought it was swollen. 2 days after surgery it still did not look better and we realized the eye surgery snapped. AHHH.. seriously, we just need a break. So we called the eye doctor and we go in on Tuesday. We are pretty certain this will mean another surgery to fix it.

Next week will be full of appointments - Zak has eye and follow up with ENT from surgery. Callie has a weight check and MRI. We also meet with Callie's speech therapist. It is one of the same one's Zak had when he was in B-3. This will be Callie's first appointment. Watch for all of our followups.

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.

All About Zak

Zachary James was born on March 31, 2005 at 11:15am in the Aspirus Hospital in Wausau after a long wait! He weighed 5lb 1oz and was 18in long, what a little peanut! Mom was only 36 weeks, but her water broke 27 hours prior to delivery. Due to failure to progress Zachary was born by c-section.

At birth Zak was not able to breath out of his nose so he was transferred to St. Joseph Hospital in Marshfield, WI. Once in Marshfield the doctors discovered that Zak had choanal atresia, the nasal passages did not develop and he would need surgery to correct it. At 5 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 he had stints in his nose to keep the airway open and allow him to breathe freely. On July 12th, 2005 Zachary had the stints removed and has been breathing wonderfully since!

We also learned at birth that Zak had a heart Murmur that the doctors will continue to monitor. It did get worse around 6 months old, however it has become significantly better since. He currently has a grade 20 murmur and has been stable for a few years. Last week he had another echo since the doctor thought it was even better. We pray as he grows he maintains a low grade murmur. We know he will always have one due to the anatomy of the heart. We are thankful he has been out growing it.

Zachary has also had some feeding issues along the way. At first we thought he was not gaining weight well because of him not breathing at full capacity with the stints in his nose and he had so much drainage from the surgery. Later we found out he had sugar in his stool so we believe he was intolerant to some form of sugar. He was put on special formula which helped a little, but he still would not eat enough and seemed to be in pain. We continued to search for answers. At 9 months Zak was diagnosed with severe GERD, which basically meant he had real bad acid reflux or heart burn. We first started with medicine and tried other options like going to the chiropractor. Nothing seemed to be the answer. After a night in the emergency room and being transferred again to Saint Joseph’s for a possible bowel obstruction (later found to only be sever gas) we finally decided on a solution. Since all of the medicine did not help and he was in so much pain that he would have "blue spells" from holding his breath until he passed our or fainted, it was decided that surgery was the only option. On Dec 16th, 2006 the doctors completed a nissen fundoplication surgery. They surgically wrapped the stomach around the esophagus to create a muscle so acids and gasses could not cause heart burn. They also placed a g-tube (feeding tube) into his stomach to help gasses to escape. The tube is also used to add nutrients directly to his stomach so he is able to gain and maintain weight better. The surgery made a huge difference in his personality. He began to smile and laugh more and started eating better, though he still doesn't eat much at any one time he now eats 4 meals a day.

At 7 1/2 months Zak had eye surgery for Ptosis, a condition in which under-developed muscles do not allow Zak’s eye lids to raise properly. The surgery connected his eye brow with his eye lids so now he has control over the lids and can see much better. It was a very minor surgery and we were home the same day. After surgery he looked like a whole new boy with a whole new outlook on life! On follow up check ups with the eye doctor we were told Zak would need glasses since he was severely nearsighted. After going to a conference held by the state for families with visually impaired children, we learned it may be beneficial to have acuity testing done. We went to UW-Madison, where we were told Zak was considered "legally blind". We continue to have him wear his glasses and work with the doctors to determine how he uses his vision and what this will mean for Zak. They suggested having an MRI to get more answers as to why.
During the MRI we learned the eye health was normal, however we found out that C1 and C2 (the first 2 vertabraes in the neck) were fused together and growing inward causing his spinal cord to be compressed over 50%. After doctoring local we met with a Neurosurgeon in Iowa that was able to perform the seven hour surgery. After 1 year of recovery in a neck brace Zak finally got the OK to be brace free! Zak has gained so much mobility from having the surgery. He is even weight bearing on his arms which he could not do because of the amount of pain.

Zak has also had 2 sleep studies since he has a difficult time breathing. It was determined he has obstructive sleep apnea and he will be fitted for a c-pap mask to wear at night. After further doctoring we learned he needed to have his tonsils and adenoids removed. This was done in August of 09. His sleep apnea has gotten significantly better, when he is healthy we are not to worried, how ever when he is ill we still monitor him closely.

Zak has also had some additional minor surgeries for ear tubes, removing an abscess and cutting his frenulum. As he gets older we spend less time in the hospital. He continues to get stronger and have less episodes of pneumonia.

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

Zachary is a very good boy and a joy to be around. He completes us! I don't know what we would do with out our little miracle! He has started life with a few challenges but he has always remained strong as I know he will throughout his life.

With strong family support we are able to give him the care he needs!