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.

+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++

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.

Results Are In

I was hoping to upload a video of Zoe talking, but unfortunately I could not get this to work so instead you will have to make do with a picture.

However, we did receive the results of the biopsy and Zoe definitely does not have EE. This is wonderful news! We still don't know what is going on but we know for sure that isn't it. We will meet with the specialist next week and see what he recommends we do and we will most likely be going to get some more opinions from other doctors.

We hope you all have a phenomenal weekend.

The Casmers

11 Months Old

Today I turned 11 months old!

Despite my yucky Wednesday I was back to my normal self today. Still a little hoarse in my throat but I don't mind too much.

I also went to see my pediatrician today and he was happy with my weight, 13 lb and 9 oz. Not a lot, but he says I am holding my own which is great.

I continue to be active and I even figured out how to take a nap, but mommy shouldn't get too used to it, I still like to be up and play as much as I can.

I have therapy next week, so I can't wait to hear how I am doing and if I am staying on track with my milestones. Mommy also started me in Baby Yoga, it is a lot of fun. (Who knew there were such funny names for stretches we do?)

Well I should go to bed, mommy likes me to get a lot of sleep, I don't mind, it just means I get up really early to play with her.

Love, Zoe

What a Long Day

Family & Friends,

I write to you with droopy eyelids, but wanted to make sure I gave an update from today's events.

The endoscopy is considered surgery since the patient is sedated, so Zoe was cut off from foods and she didn't seem to mind, till the doctors were behind schedule. Despite the late start, Zoe was in and out. The GI specialist reported that visually everything seemed normal but we would have to wait for the pathology report from the biopsies to come back. Once we know more or not know more we can determine a plan of action. One possible outcome, a GI tube to be placed in her nose, down her throat and in her stomach. That's right just like when she was in the NICU. SIGH, well we will worry about that when we get to that point, right now let's get back to how the girl is doing.

Zoe was pretty upset once she woke up, which was immediately after the tests. I was able to get her settled down and she slept for a good forty five minutes. She has mechanical croup, an irritation of the throat due to the scope, so she sounds wheezy. Zoe is very gassy as well, they had to pump gas into her stomach to look around and though they pumped it out, some is working its own way out of the digestive system. The last effect Zoe has, she reeks of the gas they used to knock her out. Every time she breathes out you can get a whiff of what they used, needless to say this might be what is causing the recent headache and sleepiness for me. Once the sedation wore off, Zoe was her normal chatty self.

Thanks be to God for a safe and successful endoscopy. Thanks to you all for the thoughts and prayers for today. We are grateful for them and glad to now be home so we can get back to life.

God's blessings and Good night,

Casmer Family

I Learned to Scrunch my Face

Not Sure What to Title This One

Dear Family and Friends,

Before I get into the details of Zoe's life, I am requesting some prayers for another family who recently had 25 week old twins. I don't know the family personally, but I was emailed earlier this week regarding the family from a close friend because of our recent experiences. Please pray with us that the Lord guide the hands of the doctors and nurses and comfort the family as he so graciously did for us.

Life here in the Casmer household has been, well how could one put it, interesting. After our trip to Michigan and the struggle with Zoe's eating we returned home to find a girl that had an appetite. (Now when I say appetite I mean she is not fighting the bottle and eating more than an ounce at a time.) We were pretty ecstatic and surely thought the trip was overwhelming and being home back in her routine was what she wanted. We should have learned that Zoe lives to prove her parents wrong. Friday was a pretty icky day but with patience and prayers, the evening was better and apart from extra congestion and a cough, Zoe's appetite seems to be improving.

We did find out the GI doctor still wants to perform the endoscopy for the biopsy despite not having any allergies. EE is still a concern so we will be doing that towards the end of the month. We also had an eye check up for Zoe, you may remember one of our concerns with Zoe is the loss of peripheral vision due to the damage in her brain. The ophthalmologist currently sees no signs of this and was very happy with how alert Zoe was. We will still be going in for check ups because of Zoe's prematurity, preemies are at a higher risk for being cross eyed or having a lazy eye. Finally, we had our monthly visit with the physical therapist. She was very happy to see how well Zoe has come along in her sitting, 3 minutes unassisted, and the reduced tightness in her arms. There are some definite areas where we are lagging behind, falling reflex (using your hands to stop the fall) and some weak rolls on her left side. So we are armed with more exercises and we will continue to work on them.

On a side note for those who live near us, now that we are in the autumn/school season, we will be more cautious with Zoe with the increased sickness that tends to happen this time of year. We ask that you help us with that by avoiding her if you even feel an inkling of a cold, please resist the need to touch her, even on her foot (she loves chewing on it now) and for everyone's health wash your hands often. We were happy to not be home bound this fall and winter but Zoe's immune system is still not where it should be and would like to avoid her getting sick. Thank you for your understanding.

God's blessings to you all,

Casmers

We Can Keep the Cat

We pray that you all had a wonderful and safe Labor Day holiday. We ventured to Michigan to visit family. Though the trip was fun and always great to be around family, we learned that little ones (Zoe) do not like change and will inevitably make a lovely vacation hard. Regardless, we were so happy to see family especially the now great-grandparents who had not met Zoe yet.

We did get some great news while away, Zoe's allergy tests came back, both turned out to be negative. We (mom) will need to make some phone calls to the doctors now to see if a biopsy is even needed or if EE is a possible diagnosis and see what other possibilities could be causing this ongoing trouble. Though this has been a very frustrating roller coaster of theories, doctors' and therapy appointments, and medications we are doing our best to stay positive and hopeful for a quick remedy.

With prayer full hearts,

Phil, Kimberly & Zoe

Labor Day Fun

Have a Happy Labor Day

Ten Months Old

To all of Zoe's family and friends,

We come to you asking once again for prayers to be said on behalf of Zoe. First in thanksgiving that we have seen this little girl grow, thrive and accomplish so much in ten months with the difficult start she has had. Second, praising our Lord for giving Zoe and all the medical staff the abilities and knowledge to make it happen. Finally, petitions for the upcoming tests we have regarding Zoe's troubled eating.

We went to the pediatrician's office, Monday, for another weight check and found that Zoe had only gained 1.5 oz in three weeks. This brings her to 12lb 13oz, she should have been over 13lb if she was growing at an appropriate rate for her adjusted age. We had been making the switch in diet and things at home were actually going quite well, till we hit the weekend. Congestion, mucus, eating less than the minimum, we thought possibly a cold but there were no other symptoms let alone a crabby baby. So perhaps the onset of allergies, quite possible especially if you know Zoe's father. We are trying all the home remedies possible and seeing some improvement. However, the doctor has ordered an environmental allergy test and beefed up her formula hoping the lack of eating will be made up with the concentration.

Today, we had a follow up visit with Zoe's GI doctor. He was gravely concerned about her low weight and her continued lack of interest in eating. Of course we relayed the history and the new test order by the doctor and he decided to tack on a food allergy test and an endoscopy for a biopsy of the esophagus, stomach, and small intestine. The reason being, he is wondering if Zoe has EE or know by its long unpronounceable name eosinophilic enteropahy, this is an over abundance of white blood cells that begin attacking the body. This usually develops due to allergies, especially food. This kind of diagnosis would require complete diet restrictions and/or medications for the rest of her life, something we do not want Zoe to have to go through. Though as the doctor put it "well we would finally know" we are praying that this isn't the diagnosis and that whatever is causing this ongoing difficulty be resolved quickly.

The tests will occur over the next few weeks and we hope to have definitive answers a couple weeks after that.

We know that whatever comes in the next few weeks the Lord will continue to support and comfort us, he has taken us this far. I am certain he isn't giving up now.

Kimberly & Phil

Another Blog to See

Good Monday! I just wanted to share a link that shares some pics we had taken of Zoe. Many thanks to Emily Ebeling for taking the pics and sharing them.

We especially love the last picture in the article.

Please enjoy and have a great Monday.

http://emandjonebeling.blogspot.com/2010/08/baby-photography-zoe.html

Napping Blues

I do not want to take a nap.

I'd rather play on Mommy's lap.

I do not need a lot of sleep

Even if I cry and weep.

I'd rather play and rub my eyes

And make some noise till I arise.

Mommy gets me in a snap,

Because I do no want to take a nap.

Hot Summer Days

Wow, August is hot. It's a good thing mommy has kept me indoors. Yucky.

I have a lot more exercises to do now that I have had a check up with my physical therapist. I am not as flexible as a baby should be so mommy will be helping me stretch every day. We also keep working on rolling and sitting up. Both are tricky to do but once I loosen those muscles I should be able to do it.

I also have been eating a bit better, mommy insists I grew but we won't know for sure till we see the doctor in a couple of weeks. A girl can't keep her petite size forever, right?

I am being more chatty too, sometimes waking up nice and early talking to myself till mommy or daddy come in and get me out of bed. What are my favorite noises to make, well I love grunting but laughing after being tickled is the best.

I must get going, I need to get washed up for the day and see what fun things mommy has planned. Hopefully they will all include air conditioning.

Just Having Fun