Happy Reformation and Halloween

Woo Hoo! I picked out a pumpkin, had an adorable costume, and spent time with friends. Even though this is my second round with these holidays, I am celebrating it like it's the first.

I am gaining weight now I have a feeding tube in my nose, but I do not like it. So Mommy and Daddy are getting me a tummy tube instead, this way I can rub my face and not worry about pulling my tube. (I have pulled it out a lot already and it's not fun when it goes back in.)

Now I must be going, I have some playing to do and I hear that there is another holiday in a month where we eat turkey. I better get growing so I can do that.

Today I am One Year Old!

It has been a long 365 days but with God's grace we have made it to year one.

Zoe continues to do well and is now growing with her handy NG tube. We are excited for the push to February (Zoe's year one mile marker) and seeing the milestones she will accomplish but we are also a little sad to see how quickly it is all going by. Time does seem to go by so much faster with children.

We thank you for your continued support and

prayers. Please enjoy Zoe's pictures and current stats.

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Weight: 1 pound 3 ounces

Height: 11 1/2 inches

Greatest Achievement: Breathing and

pooping

Weight: 14 pounds 2 ounces

Height: 25 1/2 inches

Greatest Achievement: Clapping hands, babbling, and pooping

Home Sweet Home

We got the okay and we are now back at home.

Yea, now we all get to catch up on some sleep that was sorely missed.

An End in Sight?

Sunday evening and as Zoe is getting the rest of her feeding placed in her stomach by her tube, here is an update on how things stand in Zoe's world.

Zoe's feedings were upped to 130cc, which is just little over four oz, six times a day. She really did well on Saturday only have one large throw up. She was able to take over half of her feedings orally so it seemed to have the markings of a great report from the doctors. The doctors were pleased especially after they saw a weight gain of three oz. Though this is a lot more than we expected, we figure she must be playing catch up.

As long as Sunday shows some results like Saturday, we will be going home on Monday. Yeah!!! Zoe has not been eating as well today, however I feel this is more to do with exhaustion and lack of naps in the past 5 days than anything else. It is tough to get rest when someone is poking, taking blood pressure, and temperature every four hours. Plus, she is now digesting more food than she has in the past so her body is working harder. I hope then when we get home she will have more energy once we have a quiet environment and routine back in order.

So here is praying for a great Monday report and my own bed in the evening.

Our New Home

Family & Friends,

We wanted to let you all know how things are currently with Zoe.

After inserting the tube on Tuesday evening we began using it to feed Zoe once she would no longer take the bottle. The first day or two we only had to use it once or twice a day. We also met with a dietitian and therapist to help with improving the feeding skills and create a plan so Zoe would gain weight over the long term. Each day the doctors have been increasing her volume in food and so after four days we thought we would see some improvement.

However we know this stubborn little girl. Though Zoe is tolerating the tube in her nose, we have yet to see any increase in weight. She continues to throw up and though they are not overly concerned about that any longer, she did decide to have a spectacular day on Friday. We won't be discharged till Zoe can show some improvement in this area. So as we have learned, patience and prayers are what will get us through this.

In the meantime, we have been very blessed with wonderful nurses and staff making our "home" comfortable and easy. The doctors have been very knowledgeable and doing their best to help Zoe grow. And the well wishes and prayers have been comforting as we do our best to adjust to everything.

Persevering,

The Casmers

24 Hours and We are Still Here

Never believe something if it is too good to be true, because most likely it isn't and the greatest blessings are the ones you don't expect.

This was supposed to be a one day procedure. We planned our Tuesday to be Zoe's the one day to get her feeding tube inserted in her nose and monitored to make sure she was fine. I was packed for our overnighter, Phil had cleared his schedule, and I had taken care of the laundry and other chores for the day we would be gone. I was pleased to know that Tuesday morning was not going to be a hectic frenzy mess as we tried to get out the door. I didn't realize how open the day would be, the hospital had called to push back our admission since there were no beds available for Zoe, "early afternoon we should have something and we will call you before noon." The wait only built the anticipation of the procedure and made us second guess ourselves over and over as we waited. So we killed time playing, going for a walk and as noon approached no call. One o'clock approached and Zoe was peacefully napping when again no call. 3 o'clock we finally had the go ahead and we made our way.

We arrived and were checked in and slowly getting settled in for our short stay. As the nurse gave us forms to sign and tour of our room their was suddenly a concern about why we were now being admitted fully rather than the normal quickie. Oh well, just some paperwork issues, not our concern, right? We met the resident doctor and other doctors and repeated Zoe's spectacular history many many many times. They are just being thorough and making sure as students, they dot the i's and cross their t's, I hope. It was getting close to Zoe's bedtime and the nurse was eager to put the tube in so I could feed her and finish up if necessary with the tube. We didn't have orders from the doctors yet and they were trying to create a feeding plan. Plan? I thought this was a just finish up with the pump what she doesn't eat process? I thought surely they just want to make sure we don't go up to quickly with her food and we use the pump in a reasonable fashion. Yes, this will be quick and we will have a plan.

As bedtime approached and passed and a hungry, tired little girl could no longer be consoled with nursery rhymes or toys, the tube was inserted. Not pleasant, uncomfortable, and of course just not what we wanted to do so late in the day, but it was done and Zoe was soon in my arms taking her bottle and falling fast asleep.

Then it happened. The attending doctor arrived and suddenly we are informed a whole bunch of things that we were not prepared for in any sense of the word. More tests to see why Zoe won't eat and throws up. Minimum of 5 day stay so they can get her up to the proper volume needed for her size. Won't be released till significant weight gain. And so much more that after a day of processing makes sense and is quite reasonable, but at 9 pm, exhausted, hungry, emotionally drained, not the news a parent wants to hear.

Right now the timing of coming home will really depend on Zoe. How quickly can they get her to tolerate the pump, how quickly can they get her to eat the ideal amount of 26-30 oz a day, and how quickly she can gain the much needed catch up weight she needs. They have tested her thyroid, good to go. They are checking for infections, no word yet but I assume good because we haven't seen any antibiotics. We are working with the speech therapist on the bottle, I have to say after one visit what a difference. All in all, we are very fortunate to have the team help us figure things out. We also felt affirmed about this decision once speaking with the dietitian and doctors that they were happy to see Zoe was not at the point of being emaciated, lethargic, and developmentally behind. We were being proactive about an ongoing problem and this would make for a quick resolution.

God has continued to pour his blessings on our family and we are so thankful and happy about

this. So though this unexpected extended stay

has made life a bit complicated, we are happy to see how it is making life so much better for Zoe.

They Really Should Come with Manuals

Well it has been a long week and it is only Thursday, but now that I have a few minutes I wanted to give you an update that has been happening in Zoe's life.

First, we had our follow up meeting with the GI doctor and as expected he recommended a feeding tube. Zoe had not gained any weight the past ten days and her spitting has not decreased. Though her development continues to do well there is a concern that soon the low volume of food will have an adverse affect. In addition the doctor suggested, seeing a new feeding therapist was recommended. Zoe is a "sleeper feeder" and she may be associating sleeping with the eating which may be causing the decrease in volume now that she is up more.

We didn't make a decision right away, we wanted to meet the new therapist and see what they suggested and discuss ourselves what would be best for Zoe. Meeting the therapist was very encouraging, she too suggested a feeding tube, as she really wants to work with Zoe on eating solids since this is an appropriate age for that rather than working with the bottle. She also stated that this would relieve a lot of stress and worry as we won't have to push Zoe as hard with the bottle feedings but allow the tube to handle whatever Zoe doesn't want to take by mouth.

So next week we will be staying at Children's Hospital while the staff teach us how to do all the things we need to with this and observe Zoe to see how she handles her new accessory. If all goes well it will be a one day visit. Please pray for Zoe, Mom and Dad as we take on this new challenge.