A little shorter note

Well, I am going to have a little shorter note tonight because of news that has caught us a little off guard. The most recent scan revealed that Little Claire does not have a spleen. We have not had a great deal of time to process this information but it does mean that she will need to be on antibiotics for her life. We apprecaite your thougths and prayers.

Getting the Family Together

Yesterday was an emotional roller coaster. I started the day out at Riverside hospital after getting some needed sleep. It was funny that both Mandi and I woke up with a stiff neck and she chuckled a little mentioning that she just had a baby yesterday and the worst pain that she is experiencing is a tight neck.

I woke up and headed down to Childrens well before the morning traffic. I got all of my things for the day and sat at Claire's bedside for a good couple of hours. I was just enjoying being next to her. I still had not had the chance to hold her but sitting beside her was the next best thing. I spent the good part of this time reflecting on the situation and updating the blog.

After a while, the nurse mentioned that the doctors will not be making their rounds for another couple of hours and she kind of suggested that this was a good time to take a break. Take a Break! I was a little put off from this suggestion. But then I got to thinking, this nurse has seen a lot and has greater wisdom in these situations. I eventually did heed her advice and headed to the food court at Childrens (which provides a little scamper of hope for nutrition while at Childrens compared to the cafeteria). I grabbed a cup of coffee and spread out some work files to get started reviewing some transcripts and identifying the awards for the graduates of 2010. Meanwhile, I did get caught up on some daily audio bible podcasts (pervious post).

After this short break, I headed back up to see baby Claire before driving back to Riverside to grab some lunch with Mandi. Baby Claire was doing just fine and resting well. I told her goodbye and mentioned that maybe her mom would be with me next time. Mandi requested a cherry lime aid from Sonic so we got some food.
The looming question for this next section of time was if Mandi was going to be released today. The doctor had put in some orders for her to be released at 4:00pm if her blood pressure was low enough. We enjoyed being together and talking about the events from the previous couple of days. I started to get her things packed up when the nurse did check her blood pressure. It was a little too high and it did lessen the chance that Mandi would be released. Needless to say this was pretty difficult as we both deeply wanted to get the family back together in one location. I am sure that this anxiety did not help lower her blood pressure but we did our best to talk through the situation. After a little emotional time, she did lie down and get a nap. This must have been the trick because her blood pressure did go down enough for her to be released from Riverside at about 4:30pm.

As you would expect, we headed directly down to Childrens to enjoy sometime with baby Claire. I was super excited to have the majority of our family back together. We had one more to bring into the picture… Colton. Luckily, Dave and Sami brought down the buddy boy for dinner and he brought things to spend the night with us down at the Ronald McDonald House. We were happy to have our family back together. After Dave and Sami left, Mandi and I had to trade off shifts with Colton and Claire. I took Colton down to the food court and we enjoyed a delicious Subway Chocolate Chip Cookie. When we got back upstairs, the nurse came out and said that Mandi was holding baby Claire and I would be next. I was so pumped. I had not had a chance to hold her yet. So Mandi finished and I got the chance to see her up close and personal. It made my day.

Claire is still doing well and the Doctors are still monitoring her blood levels to identify whether or not she will need the first of three surgeries.

DAB - March 30th

I have committed to listening to the Daily Audio Bible Podcast in 2010(DAB). This takes about 20 - 30 mins per day and has been a delight. I have enjoyed the opportunities that this presents as I strive to embed scripture into my daily life. I highly recommend this podcast for which you can find on itunes.
Well, to the point on March 30th.

Given the long list of events that occur when you have a baby, let along a baby with a heart problem, I did not have an opportunity to listen to the podcast from March 30th... the birth date of Baby Claire.

I waited with anticipation as to the message for this day. Will it connect to my life and have a message that can be incorporated into my struggles on this day. It is hard for me to put into words the feelings I had as I thought about pushing the "Play" button on the Ipod. Would God use this as an opportunity to minister to my spirit. The uncertainty, the questions, the doubts, the strength and the weakness at the same time. I know that scripture says in Hebrews 4 that it is "living and active" but does this still apply today? Do we really gather life directions from ancient words?

I approached the scripture on this day from the perspective of a father that is in a situation in which he can not control almost any of the variables. This is fairly difficult for someone that takes pride in being independent and dependable.

On the day in which my baby girl was born, Brian from the Daily Audio Bible read through the latter portion of Luke 8. This section of scripture speaks of Jesus healing 2 people.

Luke 8:50 "Don't be afraid; only believe, and she will be made well."

Now how in the world am I am I to hear these words. What do I do with this? I am afraid. I do believe and I ask God to help my unbelief like that of the father in Luke 9. Does A + B = C? Does A-not afraid + B-belief = C-healing? We all know from life experiences that this is a difficult formula. Is this not at the heart of being human. Of not being in God's shoes. Of not being in control of our own future.

I am actually typing this in the food court at Children's with my little 6 pound girl upstairs in the NICU. Pretty difficult to channel these thoughts and emotions. I must continue to remind myself of the lesson of trust. Trust in doctors. That they will bring insight and proper judgment to handle the situation. Ultimately, trust in a good God, one that knows the very number of hairs on her tiny head. Trust in a God that knew Claire before she was woven into her mother's womb. Trust in a God that answered the suffering of humanity by entering into it in the life of Christ. Trust in a God that says: "Don't be afraid; only believe and she will be made well."

Welcoming Baby Claire

Wanted to take a little time this morning and update all of you on the events from the past couple of days.

3/29/10
Mandi's blood pressure had been up and she was placed on homerest (good luck with a 3 year old boy). We had an appointment with Dr. Jones at 11:45 and found out that he wanted to induce Mandi that night and have everything prepared for Claire to be born on 3/30/10. This process was in steep contrast to what we experienced when Colton entered the world. We had the entire day to prepare our minds, hearts, and suitcases for the coming times. We got some lunch and tried to digest the experience. Our minds racing, trying to prioritize the to-do list and make sure that we had everything ready for our departure to Riverside Methodist Hospital.
For many months, we have had plans to have a host a planning session for NWOCYC all ages week. We did not hesitate one second to continue in these plans and were happy to have the opportunity to share our home, as well as have a community of friends pray for us as we started the process to welcome Claire into this world. Mandi and I did not get to share with these people as much as we would have liked as we were scampering around the house but did enjoy the comfort of knowing others are supporting us in the effort to heal baby Claire's heart. We left Delaware around 8:30 and got to Riverside shortly after 9:00pm.
Mandi labored through the night (just like with Colton...she's lucky) and I got to grab cat-naps in a not so comfortable recliner. Mandi did very well and baby Claire entered the world at 8:49am on 3/30/2010. We were estatic that she had good color, let out a couple of screams and did not require oxygen. The neonatologists did looked her over and greatfully said that she was doing well enough for Mandi to hold her. I was happy that Mandi had this opportunity before baby Claire headed to Nationwide Childrens Hospital. Colton got a chance to see his baby sister as well. He did ask mommy who the baby was and continued to suggest that baby Claire was still in mommy's tummy. He wanted to kiss the baby and give her a big huge, of which we had to repeat, "easy, easy, easy" but this is to be expected. We are amaazed at how similiar Colton and Claire look. It makes us simile. He is going to be a great big brother (as his shirt indicated).






This time passed quickly but I enjoyed every minute before Claire was taken to the NICU at Riverside (which they told me is actually Children's... did you get that). The cousins got a chance to see baby Claire as we walked to this new unit. Jasmine, Chloe and C.C. got a quick peak.
I guess I would title this next section "Girls Across Town." Mandi was transported to another room at Riverside while Claire was being prepped for transport to Childrens. Claire did stop by Mandi's room before taking her first trip. We were happy to see her one more time. I will be quick to say that this was a very difficult time. Mandi and I both longed to hold her in our arms.

After a little time with the family, I traveled down to Childrens to check in with the doctors and get my barrings in this new location. As expected, we arrived and found a group of specialists trying to visualize the pieces of the puzzle which define Claire's heart. After a quick glance, My mom, my sister, Robin Weier and I headed to get some lunch in the cafeteria. I did expect more than what I received in this area. For three years, Colton and I have made Sunday trips to Riverside to eat lunch with Mommy. Sometimes we eat in the cafeteria and the food is actually not that bad. Childrens... not so much. It was less than to be desired. I think I may have found a way to limit my calories and lose weight.

By this time I was super tired. I had not slept well and the emotional drain was starting to take notice. I did swing back by and check on baby Claire. By this time, I was lucky enough to get an update from 2 cardiac doctors about what they had found. I will leave the specifics for Mandi to discuss as she is more proficient in this area, but the general terms was that they were going to take Claire off of a medication (protogins) and see if her heart had adapted to its abnormality enough to sustain her until the 6 month surgery. This process will take a few days in which the doctors are monitoring her blood content and vitals closely. Time will tell if the pulmonary arteries are carring just the right amount of blood to the lungs to justify not having the surgery.

I swung back over to Riverside for some time with Mandi and Colton. Yes Colton, the Martins and Willisons have been a great help in this time by keeping track of the little guy. We appreciate their service and know that he can be exhausting. I look forward to having my family back together on Fieldcrest Dr. but am so appreciative of our family support. Colton and I had some pizza (from Riverside's cafeteria) and had some good laughs while playing together. We shared pictures and stories from the day.

Nater boy drove to Riverside and picked me up and we headed back to Childrens for a short visit with Claire. She was doing well. Still good color and resting.

Nater and I shared some good laughs and talked about life in a hospital. Wondering what it would be like to know everyone's story that you walked by. How was their heart, their relationships, their trust in the creator.

Nater dropped me off back at Riverside and I talked with Mandi and prepared for some rest. We hope that Mandi can be released today so she can join me here at Childrens.

Thanks for all of your thoughts and prayers for baby Claire.

Another Bump in the Road

It is not little Claire that is the problem now it is the incubator. My blood pressure was up at my last Ob appointment and they wanted me to do a 24 hour urine which just so happened to land while I had to work two days in a row. Luckily I work with wonderful people who are very understanding of pee being in a jug in a cooler in the bathroom. After the 24 urine, they diagnosed me with mild preeclampsia. I went to the doctor again on Tuesday and my bp was still high and was told no more work (which I was afraid might happen) and try to rest as much as possible and to monitor my bp at home and come back Friday for another Non stress test for the baby to make sure she is still moving around well. The doctor said that if the baby did not already have an other issues they would have probably delivered me this week, but as you all know that is not the case so they are doing their best to give her a couple more weeks to let her lungs mature. We are praying that my bp will stay down enough that she can get a couple more weeks of growth…..and the saga continues.

Underestimating God’s Power

As most of you know we had our second echocardiogram last week for our little baby girl Claire. I (Amanda) went into the appointment thinking that most everything would be the same as before since we have learned that most baby’s heart anatomy is formed in the first eight week of their young lives. God continues to surprise us. As Dr Wheeler (Claire’s cardiologist), was watching and interpreting the heart images from the echo he saw a few things with Claire’s heart that he hadn’t seen before. Dr Wheeler finished with the Echo and came back in with his drawing of what he thought Claire’s heart looked like now. She definitely still has hypoplastic left ventricle (a very small left ventricle), double outlet right ventricle (the aorta and pulmonary arteries coming out of the right ventricle), but this time he saw a pulmonic valve (the valve regulates blood going from the heart to the pulmonary arteries that take blood to lungs). During her last echo the most concerning thing was the fact that her pulmonic valve appeared to not be there or it was not working very well. This time THERE WAS BLOOD FLOW! Dr Wheeler also told us that Claire’s heart appeared that it had “compensated” for what anatomy she has, and there is possibility she will not need the first surgery and come out looking pretty good! So now we are scheduled to have another echocardiogram in about a month. Dr Wheeler did add that there usually is not much of a change in the first and second scans. As I was driving home so many things were running through my mind. Of course, what great news it was to hear that Claire’s heart appears to be doing better. I can not even count how many prayers I have personally prayed, as well as many others, that her little pulmonary arteries would grow and now that my prayers have been answered they exact way I had asked I didn’t know what to think. I know God will take care of Claire and of us no matter what happens, but I have also underestimated God’s awesome healing power. Claire continues to make God famous!!

Disney Trip

Thursday Feb 4th, I left school and headed to pick up the family and head to the airport for the trip to Orlando, FL. We were excited to see Mikey Mouse and see the other attractions at Disney World. I can just imagine the site as Colton, Amanda and I got on the transit bus to move from the Red Long Term Parking Lot to the Terminal. All of us had our own check on bags as well as one carry one. In addition, I had the opportunity to bring a car seat and a stroller. To say the least, I had my hands full. After checking in, we had the exciting opportunity of going through Security with a toddler. If you have not experienced this yet, good luck when it is your turn. Interesting to say the least, trying to keep a little one from running around and bumping into everyone while trying to get your shoes off and computers in the appropriate containers. Fun. Luckily, we had two adults for one child... Good odds, I guess.
We boarded the plan and found three seats near the back of the southwest flight. We got airborne and I was prepared with a portable dvd player for the two-year-old. Just our luck, the battery did not hold the charge on the dvd player so we had to find other methods of entertainment for Colton. He played with my new Ipod Touch - hitting the buttons on an average of every five seconds claiming "that one not work." But we made it without any problems.

From 2010-02-09 disney2010

We arrived to Orlando on time and Danny and Dave were at the air port ready to help us get back to the house. We rented a house that had a nice pool and hot tube (which I thoroughly enjoyed). We hang out that evening and planned our festivities for the following days.

Day One - Epcot
We woke up early and headed to Epcot on the first day knowing that it was probably going to rain at some point. As soon as we got there, Colton got to start to see some of the Characters. Stitch was the first to get denied. Colt said he was too scary so Daisy was the first picture we were able to capture. Some of the highlights were: Nemo, Figment, Mission Space and meeting the Characters. Mandi was a little upset that we didn't make it back to the countries during the day. It was raining at night and you really couldn't get that great of pictures at night. We decided to pack it up early and not stay for the laser light show that night because we had an early morning the next day.

Day Two - Breakfast with the Characters and Magic Kingdom
We got up early on the second day and headed to breakfast with the characters. Colton enjoyed the Mickey Waffles and we all got to see the characters moving from table to table. Good times and good food.
We did have a difficult time getting to Magic Kingdom as the Monorail experienced some lengthy delays. There was not enough room in one monorail car for all of us so Mandi / Colton and I got separated (bad idea). Mandi had to deal with Colton as well as had to stand with a crying baby as no mail in the car would offer her a seat (pretty sad considering she is pregnant.
Once we made it to the Magic Kingdom, we hit some nice attractions and enjoyed the day. Highlights included: It's a small world, Buzz Lightyear, Mickey Mouse Ice Cream, and the parade.


Day Three - Hollywood Studios
We slept in a little before heading to MGM. Good day of adventure. Highlights included: Playhouse Disney, Block Party, and the new Toy Story Mania. Toy Story was the coolest ride of the trip. 4-D shoot em up game.


Day Four - Magic Kingdom
We decided to go back to the Magic Kingdom on our last day to see the remaining attractions we did not have time for on Day 2. We made sure to visit Mickey's house as well as catch the Peter Pan ride. Colton wanted to ride "its a small world" again he continues to sing the song at home. Pretty funny. We left around 2pm to make sure we could check in for our flight early enough. The flight back was pleasant and we arrived back to the cold and snowy Ohio in time to meet my parents for dinner.


Overall, it was a good trip and we captured a lot of great family moments on video and still images for us to enjoy for a very long time.