Our little blessing

Laying in bed waiting to feed Claire that stupid midnight bottle after a 12 hour shift at work feeling completely exhausted, and I look over to see the sweetest thing ever.....daddy cuddling Claire in his arms. Cuddled just the way that I love to be cuddled by him.....nestled deep in his big shoulders feeling completely safe and taken care of. I am just over come with love and thankfullness. This has been such a strange journey we have been through with Claire. Lately, I have realized what an anxious heart I have had over the last year, and I cant help but realize how God has done everything to take care of us.........

I wanted to take a few minutes and let everyone know that Claire is doing AWESOME. Even as a nurse I can't help but be amazed at the medical innovations that exist today. Claire is growing, slowly meeting her milestones, and enjoying life as a sweet little baby girl. She is slowly getting weened off her medicines and we don't have to go to see Dr Wheeler (claire's cardiologist) in 6 weeks.

Thanks again for the continued prayer. The only way we have made it through all this is because of all our prayer warriors. You know who you are........and thank you really isn't enough.

Returning home from the 2nd tour of duty

We are proud to report that we have returned home from our 2nd tour of duty at nationwide childrens hospital. Mandi called about 12:00 to let me know the news that Dr Wheller was going to be sending us home tonight. We had a few phone calls to make as the insurance was trying to deny one of claires medicines but the nurses and faculty at childrens took care of the problem. We did have to come home with oxygen for Claire at night, an assortment of oral medications and a shot that must be given twice per day. Nonetheless, we are so excited to be at home.... All of us.

sweet moments

Today being saturday things are in "coast" mode as Josh said earlier today. Which means a whole lot less doctors and  whole lot less testing etc. So, we enjoyed our time with little Claire bear. Josh sent me away last night to sleep at home with Colton and when I got to the hospital this am I looked in her crib and got the biggest smile. Ahhhh.....felt so good to see that sweet little smile, and there were many more today. Of course most of them were directed to her daddy of course, but still so wonderful to see. As Colton was leaving to go home with mimi and pa for the night Josh asked him if he wanted to see Claire's boo boo. I lifted up her shirt to show him her little bandage and with the most sincere tender voice he said "I sorry sissy." and gave her a big kiss on the cheek. As rotten and ornery as he can be he does have such a kind sweet heart and I know he is going to be her biggest protector.

"the little things"

Claire is recovering like a trooper. She is doing well after surgery not requiring pain meds other than scheduled motrin and she is becoming less swollen each day. Now we have moved on to the "little things". From having the the oxygen in her nose for so many days she is completely congested. Which means lots of saline drops in her nose and patting her back in order to loosen up the mucous. She is significantly better than yesterday but it's still a struggle. So since the little sweetheart's nose is stuffed up she has a hard time eating. Which as many of you know has been our biggest battle with her since she was born. THE BATTLE OVER THE BOTTLE. (Strange i know since she is half frame and martin.......and we all love to eat :)) These "little things" seem so ridiculous in the whole scheme of her little life. What a miracle this little sweetheart has been. God continues to whisper in my ear "just trust me." What great peace to know that our God is so much bigger than all of this and he also cares about all the "little things".

Moving on up..

We are glad to announce that Claire has been moved up to 5C step down unit. We have our own private room with a shower. We were a little anxious this morning as her Oxygen Saturation numbers fluctuated up and down. Dr. Yates stopped by and reassured us that this fluctuation was normal after the bidirectional Glenn. The crew at CICU finished drawing some labs around 11:00 and got the transfer orders by 12:00. We got up to the cardiac step down floor about 12:45 / 1:00ish. It is good to see the little girl progressing.
We got a little surprise when Deb Confer stopped by to visit. We laughed that last time Claire was in the hospital, Everett stopped by. Wonder which Confer will be here in a couple of years for her 3rd surgery?

Later Danny, Karen, and Christy stopped by... and you guessed it, little Colton came by too.  Colton first ran up to his sister and did what every big brother would do... he yelled in her face. We all had to laugh.

Well, it is getting late and I might try to add some more tomorrow.

We appreciate your thoughts and prayers.

Let the tubes come out.

We spent last night in a sleep room at the hospital. Both Mandi and I were pretty exhausted and happy to have a dark room to lay our heads. We almost always sleep with a fan. Last night we obviously did not have our precious fan but let me tell you that it did not matter. We set the alarm clock, although I knew I would not need its assistance. I woke up in the morning with Claire on my mind. We quickly got our things together and headed to see how Claire was doing. The first news that we heard was that somehow Claire had pulled her PICC line out during the night. We knew this was going to be pretty bad since she has had such a hard time getting IVs.


How many sticks
Does a Claire Bear need
To get a line for blood?
That seemed to be the question. Luckily, early in the morning, the Radiology Team came up and put a new PICC line back in. Success. If only this was the last stick she was to receive today.

The day persisted with Claire slowing getting tubes removed. First was the Aertial Line, then the pacer wires, then the Aortic Line, then the Chest tube. She seemed to be doing fairly well during this process. Then we found out that the team wanted to try and get a peripheral IV in again. Obviously, this was alarming for us as she has had such trouble with these sticks. I counted... 3 sticks in each foot, 4-5 sticks per arm, and one in the head. I mean come on... 17 sticks for a little one plus a PICC line not once, but twice. That is a lot of bruising over the next month just from IVs. The IV team was not successful so they Doctors will need to monitor her reaction to the heparin drip in another fashion. I guess this is where Mandi's experience as a Cardiac Nurse (for adults) came in handy as she suggested to the Nurse Practitioner how they monitor the heparin drip at Riverside on 3 Heart. The team decided to use that technique given the circumstances. (By the way, if you want the details, email her because I didn't get the whole flush the lines for 5 mins thing).
Claire has continued to have a tougher night as they continue to ween her off of the pain medication. Now that she is becoming more awake, she really does not like the oxygen in her nose. I found that to be a very fast way to make her mad when I accidently tried to fix it. Sorry sis.
We were happy to be able to feed sis bear some pedialyte and then some milk. She ate it right down. We were happy to see this as there is no guarantee that little heart babies will continue to enjoy food from one surgery to the next.

Mandi and I are hopeful that tonight goes well. Maybe, just maybe we can get out of the Cardiac ICU and onto a step down floor. There is just something about Intensive Care Unit that is scary.
We appreciate your thoughts and prayers.

2nd tour pics

Follow this link to some 2nd tour of duty pictures:

2nd tour of duty

Today was the start of the second tour of duty at children's hospital for our little Claire bear. We got up at 4:45 in preparation for our short trip to the capital city. Really the morning events followed the normal daily routine with shots of reality coming and going as a variety of ideas came and went. How's is this day going to be different than the last trip, are we forgetting anything, etc... In the meantime trying to soak up every minute with our little one. Got the car packed and grabbed my coffee (not that I need something to heighten my senses) and heEded south. The drive was quiet. We had 104.9 the river radio station on and made our way down the high way on the rainy, cold morning. I listened for the messages in the sounds from the speakers and heard words like healer, savior, refuge. I had to stop and think, what if i intentionally listened for God's comfort and guidance. Is his presence always consistent and I choose to be so busy that I don't hear his comfort?
We arrived to the hospital on time. We were surprised to be greeted by a newfound friend from church when we walked into the front door This was a reassuring way to start the long journey down the hallway to the surgical unit and really was a foreshadowing of the wealth of support we would receive over the next 8 hours.

Mandi, Claire and I went through the pre operation procedures and preparation for the long day. Claire feel asleep on mandi and I enjoyed seeing them have some bonding time.
At 7:30, right on schedule, they came to get our Claire for her surgery. We walked down near the or and gave our sweet little one to the nurses after kisses. We knew from experience that the waiting had begun.

We made camp in one of the sections and grabbed a few extra chairs in preparation for all of the visitors. We had a lot of techniques to help us pass the 6 hours. At one point our crew had 4 laptops, an iPad, an iPod touch, an ipod, and a DVD player. You gotta love technology. At one point I had to laugh as I checked my facebook to find that many of those present had updated their facebook status and it was almost a race to see who could post updates the quickest. In addition, mandi and I were so comforted to know that so many, our closest friends and possible acquitances at best, were praying for our Claire. Verying comforting. I had to think about what a waiting room would have looked like about 10, 20, or 30 years ago. No mTter the case, Amanda and I were glad to be surrounded by such a great cloud of witnesses that were supporting us by practicing the ministry of presence and lifting our precious gal up before our heavenly father.
We received word about 1pm that the Dr G was finished with the procedure and the team was going to start the process of taking Claire off of the heart and lung by pass. Crazy technology again. I am thankful that was live in a great country with the research and response to help all children.
We remained in the waiting room for another couple of hours. Eventually Dr. G came out and shared that claire did pretty well. The surgery did take a little longer than expected because of the difficulty with the peripheral IVs. He did find that Claire has relatively small blood vessels which was way they had issues with the ivs. He also said that he needed to support her pulmonary artery a little. Overall, he was pleased with the procedure and he cautioned us of the upcoming wrestle with monitoring her pain as her body relearns how her lifeblood should flow through vessels to carry oxygen to her cells.
We were happy to get baby claire up to the cardiac icu. Mandi and I got to see our girl at 4pm. I was prepared to see her in a worst case than the last surgery. Luckily, this was not the case. She had some color and the team seemed to be regulating her pain pretty well. Two by two our family got to see her for the first time. I have admit, it was weird not being able to play with her and make her smile and laugh like we routinely had done over the pass 5 months when I would get home from work or after we put Colton to bed. I look forward to those time again.
We are now in the pain management stage of the recovery. We hope for a good night as we know the painful days to come.
We appreciate your thoughts and prayers.

1 hour down 5 more to come

We just got an update that the team has just started the process to put Claire on the heart and lung bypass. It did take a little longer in the pre operation procedures because they could not get a good IV line in. They will now proceed with the bypass and the procedures. Probably going to be more like a 6 hour procedure.

The countdown... 3 days

Mandi, Claire and I headed to Nationwide Children’s Hospital today for the pre-admission procedures for Claire's next surgery. We talked with the Cardiac Anesthesiologist, Cardiac Nurse practitioner, and our friend Keyona, the Cardiac Nurse. I will share the specific information below about the specific steps of the Unilateral Bidirectional Glenn Procedure that Claire will have on Monday. The IV team also tried to get blood samples from our chubby Claire Bear. They started with the left hand.... no success, then the right foot... no success, then the right hand... didn't happen, then the last try.... the left foot. No luck. Obviously, our little girl was crying uncontrollably the entire time. I could stop thinking about this is the Claire Bear we are going to have for a few days post opt. Here we go. The Cardiac Nurse practitioner decided that the blood sample could wait until Monday morning.

Unilateral, Bidirectional Glenn
We will arrive to Children's Hospital bright and early at 6am. Like most visits to a doctor, the day will start with paperwork and checking insurance. Claire will get a physical examination with blood labs to prepare for the operation. We will be able to have two people back with her during the pre-op procedures. Around 7:30am, Claire will head to the OR for her surgery. The anesthesiologist will start with gas and then the team will get the central and arterial IVs in place. Then, the doctors will use cool packs and a cooling blanket to lower Claire’s temperature for the procedure. An incision down the midline will allow access to the heart through the breastbone where the heart will be placed on by pass and the heart rate slowed in preparation for the surgery.
The normal circulatory system has just one Superior Vena Cava (SVC). This blood vessel carries deoxygenated blood from the upper circulatory system back to the right atrium of the heart. Our special Claire has a little different anatomy. Instead of having one large SVC, she has two smaller SVCs.
The purpose of the Glenn procedure is to connect the SVC to the pulmonary artery. This will reroute Claire’s deoxygenated to the lungs, not the heart. The typical heart has two collection chambers (right atrium collects deoxygenated blood from the body and the left atrium collects oxygenated blood from the lungs) and two pumping chambers (the right ventricle pumps blood to the lungs, the left ventricle pumps oxygenated blood to the body). As you may recall, Claire basically has half of a heart. The Glenn procedure will alleviate some of the work her little heart has to do. Here is my best explanation of the steps of this procedure:
1. Place the blood flow on by pass to allow for the doctors to work on the heart.
2. Disconnect the Superior Vena Cava (SVC) from heart.
3. Stitch the hole in the heart where the SVC used to be.
4. Reinforce the lower side of the pulmonary artery where the SVC is to be attached.
5. Connect the SVC to the upper portion of the Pulmonary Artery.
6. Remove the shunt that was added during the last surgery.
7. Repeat the procedure for the other SVC.

Obviously, this procedure is a lot more complicated than the 7 steps I listed above. We know that Claire will have a pretty tough day on Monday 10-4-10. She will have a lot of tubes and wires post-op. Usually the parents are not encouraged to hold their babies for about 2 days. The change in blood flow also causes swelling in the upper extremities, chest and head. This swelling usually causes extreme headaches in the first 24 hours after the surgery.
Our family would appreciate your thoughts and prayers during this difficult time.

You hold me now

Hillsong United
You Hold Me Now
http://www.youtube.com/watch?v=Qx2-Inc8TkA

VERSE 1:
On that day when I see
All that You have for me
When I see You face to face
There surrounded by Your grace
All my fears swept away
In the light of Your embrace
Where Your love is all I need
And forever I am free

PRE CHORUS 1:
Where the streets are made of gold
In Your presence healed and whole
Let the songs of heaven
Rise to You alone

CHORUS:
No weeping no hurt or pain
No suffering You hold me now
You hold me now
No darkness no sick or lame
No hiding You hold me now
You hold me now

VERSE 2:
In this life I will stand
Through my joy and my pain
Knowing there's a greater day
There's a hope that never fails
Where Your Name is lifted high
And forever praises rise
For the glory of Your Name
I'm believing for the day

PRE CHORUS 2:
Where the wars and violence cease
All creation lives in peace
Let the songs of heaven
Rise to You alone

BRIDGE:
For eternity
All my heart will give
All the glory to Your Name

A message from Job

what do you think is the relationship between blessing from God and the obediance to him?
Why do we seem to think that if we live a good life and add a ceckmark in front of a religious list that we deserve to keep that good life? Job was a geat man, greatest among those in the East. His wealth, his family. Gone. Crazy, how would I react? Would I curse God and die?
Satan assumes that humans will not follow God without some payoff. He even kind of taunts God seemingly saying "they don't love you that much" or "they only love you when things are going right"
Interesting that God is silent for 37 chapters and the in chp 38:4 - God asks Job a series of questions. At first glance this looks demeaning. Deep down, I think God does some encouarging and educating during this long series of questions. One statement is out of place. Why does God send water where no one lives? What's the point? Why would you put the most valuable resource at this time where no one lives and like it? Why would you use this language to a man hurting, a man in the circumstances of Job?
HE GIVES FOR NO REASON AT ALL BECAUSE THAT IS WHO GOD IS. He is that kind of God who delights in giving for no reason at all.
In the end, does Job learn anything?
Job 42:15 - notice Job gives an inheritance to his daughters; this just didn't happen in these times. Why would he do this?
Job, through his relationship with God, has learned to delight in giving for no reason.

Getting closer

this is a picture of all of us in our matching "day for hearts" tshirts (this wonderful little carnival they have for all the little heart kids and their families at children's. colt had a blast, and loved that we all got matching tshirts.

Sorry for being absolutely terrible about updating the blog but with two kids it leaves little time for blog updating. Claire has been growing like crazy. She is 12.5lbs now which puts her in the 50th percentile....quite a bit of growing in her little 3 months considering she was only 6lbs 2 months ago and in the 5th percentile. We had our monthly checkup with Dr Wheller, our cardiologist, and said Claire is doing wonderful. Her oxygen saturation is right where they want it to be (low 80's) and she is chunky (one of the best indicators that a baby is doing well). So, we are headed for the next step in the middle of august. We will go back to the cardiologist for an echocardiogram (ultrasound of the heart) and have an appointment wiht Dr Wheller. After that appointment he will present Claire's case and we will get a surgery date after that point. WOW, hard to believe that we will be headed back to children's for another surgery in just a couple of months. I have had so many emotions streaming through me. There is lots of differences this time around. We know what we are getting into....(we know the good places to eat around the hospital, we are fimilar with the cicu and stepdown) in that perspective it should be a lot easier. Unfortunately this time around Claire will be around 6 months. For all my mommies and daddies out there you know how awful it would be to have a baby that wants to held and you cant hold them. This time around Claire KNOWS us, and that is a major difference. Once again, we are calling on our prayer warriors! I am still humbled and awed by God protecting and healing our baby girl the first time.....and interested to see what we will learn this time around.

A link to some Pictures

Here is a link to the facebook album of Claire.

I am still trying to find the time to add a little words to the story of bringing her home. Who would have thought that time would be tough to come by with a new born at home?

Goin' Home

Happy to report that after 2 weeks and 6 days, the entire Frame family is back to our house in Delaware.

I hope to post more of a description tomorrow with some pictures.

We love you all and thank you for your thoughts and prayers.

Heading to the Step Down (which is actually a Step Up)

4-15-10 Tax Day
Mandi and I got to the hospital and headed for the CICU to see our baby girl. We walked the halls with anticipation because of the experiences from the previous night. We had prayed all along that little Claire would be a fighter… she was throwing some punches which probably did not help with her pain levels. We got to our room and she was resting pleasantly. Shortly after we arrived the nurse practitioner team took the chest to out. This was a huge relief of the pain for Claire Bear. We started to take her off of the pain medication. It was nice to start to see some of the tubes going away. We laughed because at one point, every extremity and 5 of 7 orifices had some sort of sensor or tube.
We had a great afternoon and slowly watched more sensors and tubes come away. Mandi got to feed her and I just hung out. I was super tired from two weeks of excitement and talked with Mandi about heading home a little earlier (8:00pm) to hang out with Colton and get to bed early. Little Miss Claire Bear must have heard me because she decided at that time to have a little set back. Her oxygen saturations fell below acceptable levels and gave us a little scare. The team of doctors decided to give her some red blood cells to increase her oxygen carrying capacity at about 11pm. Luckily, this did the trick. Eventually, her levels got to the point where we felt comfortable heading back to Delaware. As we left we were unsure how this little set back would keep us commuting to and from Columbus.

4-16-10
Colton woke me up bright and early. We watched a little TV and I made all of us breakfast. We dropped off Colt to Mimi and headed to the hospital. Just as we were getting off the exit, Mandi’s phone rang. We still get that sick feeling in our stomach when we see the number (614-722-2000). What the heck this time? It did not take long to hear from the tone of Mandi’s voice that it was positive news. Claire was being moved from the Cardiac ICU to a step down unit which is actually a significant step up in amenities. We now have our own bathroom and Claire is mobile! All of her monitors communicate through a wireless network which allows us to move about the floor. The floor has two playrooms which I am excited to show Colton and is more kid brother friendly than we have experienced at Childrens. We are so happy to have Claire doing well and in a place where we can actually have a family relax TOGETHER. We can shut the door and there is not a whole lot of things that a curious three year old can screw up.

We are excited for Colton to get here tonight and actually get to hold his little sister.

We appreciate your thoughts and prayers.

Give Me Some Meds…

I woke up this morning as you would expect any father in our position. Not really a gradual wake up by any means. As soon as consciousness arrived, my mind quickly started running through the events of the day. I lay in bed for a little while and waved into and out of prayers for my baby girl. Eventually, I decided it was time to get a move on and jump in the shower. Shortly after I started the super hot water, I heard Mandi’s shower turn on. I was a little surprised to hear her up so early. I finished getting ready and then had a chance to talk with Mandi. She told me that the NICU had called and wanted to move the surgery up from 1:00pm to 10:00am. Well, this started to put a little sense of urgency for the Frame family. Then, Mandi got another call and they said the plan was to move the surgery up to 9:00am. Now we were in super urgency mode. The little Claire Bear continues to add surprises for her parents. We got ready and headed to the hospital. A different nurse did call again and let us know that they would not take her to the OR until we got to see her. I was a little afraid of the traffic as we were headed to Columbus during the heart of rush hour. Luckily, traffic was not too bad and we made it to the hospital to spend some quality time with the little one. I would clearly define this time as very joyful, yet a nervous tension in the air. Knowing that your little girl will have a knife touch her skin in a very short amount of time is pretty horrible. Mandi and I soaked every minute of this time before she left us and headed into the operating room. Everyone was so nice and provided a comforting atmosphere. Now the waiting…

We made camp in the family waiting area and where we were met with a crew of individuals to keep our minds from wondering too far (Al and Cody from DCC, Karen, Kandy, Heather and big brother Colton). Our conversations did vary and every so often we would get an update from the nurse on the procedure. All of us played with Colton and he did bring the crowd to laughter a few times. In fact, two other people sitting close to us chose to sit elsewhere because we must have been too much for them.

I was the first to see Dr. Galantowicz approaching. I tried my best to read the body language upon his arrival to get any indication as to the prognosis. I kind of pride myself at being able to read this nonverbal tool. Unfortunately, this was not the case today. My gut feeling was that he was going to give us great news, but how well do I know him. Could he be masking any negative comments that might be shared? Luckily, my gut feeling was correct and he shared that Claire was doing well. He said the procedure went as planned and she was already extubated and off the ventilator. I was impressed. We were happy to quickly share this news via facebook, texts, and phone messages.

We went to lunch with Karen, Kandy, Heather, and Colton then headed to the playground to hang out with Colton on this wonderful sunny day. It was a good relief.

After the designated time, we decided to head up and check on Claire. She had been moved to the Cardiac ICU. I am not really sure how to explain this next section. Lets just say that my perspective of doing good and the doctor’s were a little different. She did look quite pale to me and I did not like the chest tube at all. But all the doctors and nurses who deal with little cardiac babies said she was doing pretty well.

According to the title, you should be able to tell that we have had difficulty keeping little Miss Claire pain free. Man does she have her mom’s temper (don’t tell Mandi I said that). We learned from the last CT scan and sedation that she is extremely sensitive to fentnyl pain meds. If she has too much, she will have apneic periods; if she does not have enough she screams. Not fun either way. This is a case where we need the happy medium.

We are hoping for a relaxing evening.

We appreciate your thoughts and prayers.

The Long Wait

Claire’s big day is tomorrow, and today she is two weeks old. It is been some of the longest weeks of our lives, and we are looking forward to tomorrow as the start of the recovery period. We have had some small joys lately giving her a bath, watching her open her eyes more often, and giving her bottles again. Claire will be headed to surgery between 1-2pm tomorrow and we will wait for 4 long hours for our baby girl to come out of the OR. The first hour will be spent getting her prepared for the surgery including placing an arterial line to monitor her bp and getting her intubated. It is still hard to imagine working on a heart the size of a walnut. Thank you for all the prayers and encouragement we have received recently…..it is very humbling….and we just ask for your prayers for Claire and for us on her big day.

Another pleasant day

Today was another pleasant day. Mandi and I enjoyed holding the little one and feeding her the small 14mL bottles at 9,12,3,6...
I am going to try and give going to work a shot tomorrow. I plan on working on Monday and Tuesday. We are hoping for some relaxing days in preparation for the surgery on Wednesday.

A Little Medical Lingo

Things have been going pretty well. Not a whole lot to report from Children’s these days, which is good. We are just preparing for the surgery on Wednesday. I thought I would take a little time to explain the procedure that will take place.
Claire’s official diagnosis is the following…

Cardiologist's drawing from 3-30-10

Unbalanced AV Canal defect: Unbalanced with a single dominant ventricle and a second hypoplastic ventricle. This results in essentially single-ventricle physiology (so what does this mean) she only has the right side of her heart and all of the necessary veins and arteries connect to these two chambers.

Large ASD (atria septal defect): large hole developed between the right and left atriums.

Pulmonary stenosis: shrinking of the pulmonary valve and arteries

Essentially all babies with a single ventricle defect receive the following three surgeries:
1. Shunt placed between dorsal aorta and the pulmonary artery. (typically first week)
2. Glenn Procedure (typically around 6 months)
3. Fontan Procedure (typically around age 2)

Surgery Number 1
The first surgery is used to keep the PDA (patent ductus arteriosus) open to allow just the right amount of blood to travel to the lungs. The ductus arteriosus is a normal part of the circulation of the fetus. It is a blood vessel that connects the two large arteries coming out of the heart, the aorta and the pulmonary artery. After birth, this duct usually closes but little Miss Claire has received prostaglandins to keep her PDA open (Aprostadil is also used in maintaining a patent ductus arteriosus in the newborn. This is primarily useful when there is threat of premature closure of the ductus arteriosus in an infant with ductal-dependent congenital heart disease). The side effects of this medication have been increased temperature and apnea.

We believe that the surgery will take 4-5 hours. A good bit of the first hour will be specific to preparation (getting arterial iv lines, sedation, etc.) The cardiothoracic surgeon will start with a small incision on her right side. They will separate her ribs and gather a pathway to her small little heart. The shunt will be connected between the dorsal aorta and the pulmonary artery. The shunt should provide just enough blood flow to her lungs. This is a fine specific system. We do not want too much blood flow to her lungs, but we want just enough to keep her oxygen saturation within an acceptable range. If there is too much blood flow to the lungs, they can become over filled and cause lung problems. Obviously, if there is not enough blood flow to the lungs, she will not have enough oxygen in her blood to sustain her cells.

Crazy that we have the technology available to perform such surgeries and live in a country that believes all life is valuable.
Given that you now have at your disposal the World Wide Web and can Google any of the above information, I feel obliged to tell you that a lot of the information out there is not super current. Research has made great strides in treating little ones with these disorders. The Frame Family chooses to steal all optimism from the doctors and nurses as they share their positive outlook for our baby girl.

We appreciate your thoughts and prayer.

The bottle is back

We got to the bedside just as the doctors were rounding this morning. We were happy to hear that little Miss Claire would be able to eat again. Not a whole lot of excitement today, which is a good thing. We got to feed her again and she did really well.
Thanks for all your thoughts and prayers.

A Pleasant Day

We arrived to the hospital just in time to see little Miss Claire get the tubes out of her throat. She was extubated and did not require the wonderful Cpap. We did continue to mess with her a little to make sure that she was waking up enough to take her own breaths. Only a few foot taps and flicks were necessary to keep her breathing on her own through out the day. Mandi and I were both happy to be able to hold her again after the scares from the previous two days.

The surgeon’s nurse did stop by today to get the consent paper signed and go over some of the preliminary information before surgery. At this point, we were a little caught off guard when she was saying we would be heading to surgery at 8:00am. Previously, we had talked with some other doctors who mentioned that they were a little concerned with the white blood cell counts and wanted to wait a little longer before surgery. After we shared this information with the nurse, she did call and double check to make sure and sure enough, it appears that Claire will have her surgery on Wednesday April 14th. Obviously, this type of planning can change by the minute.

Being tired of the food at the hospital, Mandi and I (and those that have come to visit) are beginning to explore some of the cafes around German village. Sami and Dave tried to take us to Thurman Cafe today (home of the Thurmanator - huge hamburger conquered by the Man vs Food guy) but it was a little too long of a wait. We walked a short distance down the street to Easy St Cafe. Good place. Other top picks have been Schmidt's, Planks Cafe and Club 185.

We appreciate your thoughts and prayers.

Still Waiting

Josh and I were both relieved to see Claire’s sweet little pink face this morning after leaving her looking pale and slightly blue last night. Today has been spent watching her slowly come off the ventilator and all I wanted to do is hold her. She is doing pretty well just hard to watch her get agitated with the tube in her throat since that do not want to give her anymore sedation. The cardiologist confirmed today that they will be doing surgery early next week since we had the little set back with the her increased white blood cell count last night. So……we wait and we pray.

Sleepy Claire Bear

Yesterday was the first day in which the visitor restriction was lifted at Children's hospital. Mandi's family had a chance to meet baby Claire, some for the first time. I was the proud papa showing off my little girl. Mandi answered a lot of questions pertaining to what this and that cord and tube does. Colton was super excited to see his baby sister and said "I want to pet her" and "I want to hold her." Of course, I forgot the video camera in the car so we were unable to capture this moment in electronic form. It will be embedded into our memories for a life time.

Claire started to prepare for her CT Scan and New IV around 1:00. Little did we know that this next process would send baby Claire into a little set back. She was intubated for the procedure and placed on sedatives to prevent her from moving during these important scans and procedures. We left for dinner with my parents and both of us expected to return from Planks Cafe to an awake and alert Claire Bear ready to give her the first bottle she had received in days. Unfortunately, this was not the case. She was not breathing on her own yet, in fact, the Doctors had to increase the respiration rate with the ventilator to help get her ph level back to baseline numbers. We continued to wait at the hospital into the early night. In addition, we got word that her white blood cell counts were up which indicates the possibility of infection. It was super difficult to leave the hospital last night not knowing when our little baby was going to be able to breath on her own. Something extremely uncomfortable about the necessity of a machine to breath for your baby. We are glad for the technology but hope that we do not need it much longer.

All that said, we found out this morning that her first heart surgery has been pushed back until early next week because of these factors. The NICU waiting game continues...

We hope that baby Claire can start to breath on her own sometime today so we can start to get some food in her and prepare her for her first surgery next week.

We appreciate your thoughts and prayers.

Another day

4/5/10
Not too much to report on this day. The cardiologists did decide to have one more picture with a CT scan before Claire has her first surgery. We had a couple of instances of apnea (where she forgets to breathe) which is a side effect of the prostins. Obviously this is a little scary when you see the oxygen saturation stats go down and her little chest is not moving.

We were happy to hear from the nurse that visiting restriction had been lifted. A good deal of our family was pretty excited as they could now come see the baby.

We appreciate your thoughts and prayers.

Easter Morning

Easter Morning. The day in which joy is set free from the pores of Christians all over the room. The celebration of the resurrection. The day in which the grave was conquered and death no longer held its reign on humanity. God won.
We did not start our Easter Sunday as we would have hoped. Mandi and I were resting comfortably in our own bed, the first in about week, when the ring tone sounded. Everyone knows the feeling when your phone rings unexpectedly, especially first thing in the morning. The heart beat automatically increases and your senses keenly focus. It took me less than half a second to think of all the things this call could be about. What the heck was going on? I listened intently to Mandi’s voice as she spoke with the nurse practitioner about Baby Claire. I could tell by her response that it was not positive news, but at the same time, there was no sense of complete urgency. We found that Baby Claire’s oxygen saturation had dipped below acceptable levels over the night and the protins had been started to keep her Ductus Arterious open until a shunt could be placed into this small blood vessel to keep just the right amount of blood flowing to her small lungs. There was in stark contrast between the joyous atmosphere most Christians were sharing on this resurrection morning and the melancholy mood on Fieldcrest Ave.
We were hoping that baby Claire was going to make it without needing the first of three typical surgeries for hypoplastic left ventricle, but it is pretty apparent that her little body will need this surgery. I think back to our conversation with Dr. Weller the day before where he mentioned that he is always cautious when the first surgery is not completed. It decreases the unknown factor before we would take baby Claire home.
After the conversation with the nurse practitioner, we decided to get up and make our way towards Childrens to visit with Baby Claire and hope to talk with Dr. Weller again. It was difficult waking up Colton because we knew that he was not feeling well. Not only was he not feeling well, we knew that we were going to be dropping him off with his Mimi and would not see him for the majority of this Easter morning.
The drive was fairly pleasant. Beautiful sunny morning, crisp air with a bit of a chill, not too cold and not too hot. We made note of the flowers springing up all over the countryside and committed that next year we were going to plant some bulbs. It was a rather quiet drive and I imagine a lot of reflection both from the driver’s and passenger side seats in the CRV. We got to the parking lot at Polaris and dropped of the sick little buddy. He did pretty well and waved to us as we drove away to see our other sick little buddy. I know that running through both of our minds was, what the heck is happening to our family? To ease the silence, Mandi turned on the radio. At first it was just some background noise and someone talking and I was not really listening. A very familiar song was the next to be broadcasted. Mandi and both started singing the song, just like we had done many times at church. We continued through the first verse and then came the chorus and we both had an instant rush of emotion leaving us unable to sing the words. “Savior, he can move the mountains, my God is mighty to save, he is mighty to save. Forever author of salvation, he rose and conquered the grave, Jesus conquered the grave.” Very powerful moment in our time of need.
We had a wonderful visit with baby Claire. We did get to talk with Dr. Weller and found out that the team of Doctors will meet on Monday. We will likely have the first of three heart surgeries on Tuesday or Wednesday.





We took a little break from baby #2 to enjoy some Easter traditions with baby #1. We made our way to the Martin’s and had an egg hunt with Colton. He kept saying “Found another one” as you picked up one after another. Great meal and good times with our family.




Now we are back at Childrens to spend the rest of our Easter Sunday with baby Claire. She is snuggled up with her mom. We are sure that she wants to eat but the Doctors have decided to cut out the feeds for now because of the medication and the malrotated bowels.
We appreciate all of your thoughts and prayers. We know that they make a difference.

Playing the Waiting Game

We are in a little better sprits today. We made it back from lunch without some news about a scan that showed another problem. We were happy to talk with Dr. Weller this morning (a familiar face from whom we have been seeing since December) about Claire's situation and maybe a little timetable for events. He made it very clear that the heart is the number one priority and the malrotated bowel can wait. As long as there is no emergency, it sounds as though the intestines will not be addressed until later.

The past two afternoons have been quite difficult. I just keep thinking, can't this little girl catch a break. I am amazed at how perfect she can look on the outside, yet how damaged she can be on the inside. Stupid heterotaxy!

Mandi made reference to the NICU roller coaster. I would say this is a pretty accurate analogy to describe the activities from the last two days. After the difficult news yesterday, we decided that we needed to run home and hang out with Colton a little. My sister came down to stay with him for a couple of days and I know that he has had a blast with his Jazzy and C.C. We ran into a little traffic on the way home, not thinking it was Good Friday and there would be more people on the road traveling to see family. I knew my patience was a little thin when I had to block a car that was trying to drive up the side of the highway to get off at the very same exit I was waiting for. I was pretty pissed. Pretty funny the things that can irritate us at certain times.

Eventually we did make it to Fieldcrest Dr. I was thankful for the weather to allow us to run around outside, kicking and throwing balls at each other. Very therapeutic, and I just enjoy being around that little guy.

After the past two difficult days, we have decided to move from our Ronald McDonald House back to Delaware. I believe this will help us feel a little more normal again. The RMH has been a blessing and I truly appreciate the service they provide to families during the most difficult times. For the most part, the people were very friendly. I know that they probably have to guard themselves from becoming callas to individuals that take advantage of their free gifts. I could tell that they know they get taken for some free rides, yet they decide to move forward and offer assistance. If you have ever worked in a soup kitchen or homeless shelter, it was the same type of attitude in which they are pretty forward with guidelines and expectations. The population at the house was very diverse, from Amish to urban, southern Ohio to well, you know what I mean. The facilities at the RMH were amazing. It was very clean and contained all the amenities necessary (laundry, exercise room, playground, tv rooms and library, free wifi). We are leaving with a very positive experience and probably will take advantage of this service again when Claire Bear has some of her surgeries.

Tomorrow is Easter. A day of Resurrection. A day of Hope.
I sure hope that the rising of the sun tomorrow produces in our lives the hope of new life, of joy and healing.

another tough afternoon

The Frame family is starting to detest afternoon scans for Baby Claire. Yesterday we found out that she did not develop a spleen. The spleen serves three major functions within our bodies (1. holds extra blood, 2. monitors red blood cells, 3. immunities). At this point the Doctors are most concerned with the third and thus she will be medicated with antibodies for all of her life.
As if the heart abnormality was not enough, then we introduced the spleen, about 3:00pm we found that Baby Claire has a malrotated bowel. This means that the small intestine is not in the proper place and at a higher risk of blockage. Surgery will be required but it appears that the team of doctors want to see how the heart progresses before pursuing this problem.
For your benefit and mine, I will refrain from reflection tonight.

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.