They are home!

Joy just called and said that they are home. She sounded very happy to be there. Since they do not have internet access there, she asked me to let you all know.

Thanks for your prayers and support.

Grandma Cathy

On the Road Again

Free at last!!!! We're on our way home!! Blaze has gotten a great bill of health and is out of the hospital. We're checking at of the Ron McDon house and will start on our way home in a couple of moments.

I can't tell you how relieved Blazey looks and how excited we are!!!!

Thanks for your prayers. Keep checking back for updates!

Love to you,
Joy

A++

I am ecstatic to report that after doing two echoes, we got the results we needed! IF Blaze has a good night, stats remain good and no fever, then we will be released tomorrow, probably around eleven a.m. Woo-Hoo!!!!!!!!

They took him down early this morning without me to do the echo, EKG and x-ray. A tech met me on our floor to say that she was going down and wanted me to come. They refused to do the echo because he was too upset and the surgeon wouldn't accept the results. I got him and he immediately settled down. The x-ray went very smoothly. They couldn't fit him into their schedule again until mid-afternoon. He did so much better with Mommy holding him. YAY!!!

Blaze got his IV out today and kept trying to eat the leads that the monitor was hooked up to for them to get the stats. He was in some pain today, Tylenol was our friend! He had a rather fussy day and we both took a nap at one point. Our family is in a "study" to see how parents and children cope in our situation. The hospital assigns us activities to do. They gave us a nice cd player and had me listen to a cd, then play a different cd for Blaze. His was a lullaby cd and a beautiful, baby-friendly book accompanied it. For the first time ever, Blazey and I both fell asleep to a lullaby cd. It was nice. So, I dealt with this fussy baby all day, waited for the night nurse to get there before heading back to the Ron McDonald House...so I was really hungry and a tad frazzled by this point...and Blaze became quite the charmer. He was all smiles and giggles for Heather, the night nurse. He spent last night in her care, too. I am so glad they adore each other. Apparently the nurses squabble a bit over who gets to hang out with him at the Nurses Station. How smart of him to be charming at just the right places! Daddy taught him well! HA!

We got some other good news today. Blaze's next surgery will be farther out than we had anticipated. As soon as he's healed, and flu season is pretty much behind us, we can start taking him places! Hooray! Hooray!!! We are thrilled!!! AND his medications have changed, there's just one we will have to deal with long term. No more cutting baby aspirin down to small pieces and crushing them!!! What an unexpected blessing!!

Tim and I are going to pack up tonight, as much as we can, then go get Blaze and hang out with him in the morning until he's dismissed. We'll then bring him back to the Ron McD house so we can check out. Since we're not guaranteed he's going home tomorrow, we can't check out until we know for sure. What a sweet situation to be in. As you're praying for us tonight, please remember the other families in the Ron McD houses who didn't get the news we did today.

Thank you! We'll try to update this before we check out tomorrow.

Love Joy & Tim

Needing an A+

Dr. Huddleston came by this evening and said that Blaze will go tomorrow for an echo, EKG and x-ray. He is expecting those to come back clear. If they do we will be leaving...drumroll, please... Wednesday! Woo-Hoo!!!

So, we're praying he "passes" the tests tomorrow!!! HA!

Blazey was very upset when I left him this evening. The nurses assured me that they would put him in a bassinet and coo over him at the nurses' station. He wasn't happy in the meantime. I really needed to eat and rest, but I'm having Momma Guilt. I've been told that Momma Guilt doesn't actually ever go away, there's always something. I don't know about that, but I do know his big beautiful eyes were full of tears when I told him bye tonight. Poor little fellow!!!

Thank you so much for the encouragement and prayers! They're what's getting us through this!

Joy

Bye-Bye CICU

As I email this, we are getting ready to go to the "Progressive Care Unit." Blaze only has an IV in and some leads attached to the outside of his chest now for monitoring purposes. The IV isn't connected to anything, they just leave the set up in him, in case he needs some additional medicine. The only thing he's getting through IV at this point is Lasiks, a diuretic.

Blaze is doing amazingly well. His Grandpa & Grandma Gilzow (Homer & Jeane) were just here to see him. They said with the blanket over his chest you would never guess he had surgery. He still looks a little puffy, but is doing much better over yesterday. He wants to be held, he wants to eat the leads, he fights sleep, he raises a fuss when he's hungry or dirty...so we're pretty much back to normal! HA! We are getting to hold him today, and change him when needed.

I'm wanting to hunt down a hospital gown or sleep shirt for him so he's not so tempted to play with the monitor leads. We really strive to distract Blaze and tell him "NO" very rarely. We want him to know we mean it. He's hearing it today when he attempts to take out his IV. Yeesh.

Tim's feeling better and we both slept really well last night. Thanks for your continued prayers.

Blaze is feeling very lethargic, but appears to be doing really well. He's not connected to anything but an ARC line, which is like a multi- IV line and it measures things very specifically. Exact measure of breaths in a minute, that sort of thing. He recognizes us, attempts to smile a bit, isn't quite as coordinated as he would like...but he's happy and doing well. Blaze looks good, though he is puffy and looks flushed. He's also very warm to the touch. Part of his "flushed" look is his reaction to the tape they had used across his face to keep his oxygen line in. Poor little dude! He got frustrated tonight with me because he sneezed seven or eight times in a row, and I wiped his sore little nose. He has incredibly sensitive skin. He looks like he is feeling better, not drugged, but still very lethargic, as you would expect someone who had major surgery to be!

Chris & Martha Stanley are our heroes of the day...they brought us big fluffy pillows! That should help. It's a considerable improvement!!! Plus, it was so nice to see them.

My mom is feeling better, but it turns out Tim's mom had the same thing and Tim's been fighting it off all day. I don't feel overly well myself. I think mine has to do with the lack of rest more than anything else. Tim's mom is feeling better, Tim's still not feeling that great, but he did eat something for the first time today. Not fun.

So, we'd appreciate your prayers for health and that Blazey gets rested up and out of CICU tomorrow. Please also pray that we get a good night's sleep. I'm positive these pillows will help! Thank you!

Joy

"We have him back"

Those are the sweet words Tim said to me a little while ago. Blaze is no longer the drugged, nauseous, sleeping baby we had been seeing. He is in a bouncing seat, sitting up, laughing at the t.v. and is happy as a lark. The only time he's been fussy today is if he loses his pacifier or he has a dirty diaper, which is typical for Blaze. He's pretty much off the pain medications...other than Tylenol, when needed...and he is to have the drainage tubes removed from his chest today. They are considering removing the leads to his heart today, too! He currently has some leads that run from his heart to a temporary pace maker, to use if he needed it...and he didn't! Praise God!!!

Thank you so much for your prayers! We are crying tears of joy at this point over our little guy and his terrific progress.

My mom was set to leave here today at 1 p.m., but she has either the stomach flu or a touch of food poisoning. She's just miserable. As you rejoice with us over Blaze's progress, please keep Mom in your prayers.

Love to you all!

Joy

Resting

Blaze's blood pressure is fluctuating, so they are making adjustments. He's being weaned off of the heavy duty BP medicine. Apparently he's on more than one, but his body is adjusting. He's also off of the morphine and getting Tylenol for his aches. Because morphine makes him so nauseous, he is able to eat some pedialite and not throw it up!

Blaze looks amazing, especially considering what he's gone through! He actually has color and his hands feel warm...that's new for us. He looks really good.

He's sleeping really well right now and just seems so angelic. : ) My mom is staying at the Parents Lounge at the hospital, so she will be checking on him throughout the night. Tim & I are back at the Ronald McDonald House for the night.

Thanks for your prayers!
Joy

Sleeping

Blaze has been resting really well. We occasionally have been going and peeking in through the door at him. I just took the cleaned blanket into his room a few minutes ago. He is sleeping so peacefully, not a bit agitated or distressed. What a blessing! I looked at the monitor and read the blood pressure. It is on the low side now. Hopefully it's a combination of the drugs used, but I really hope it's due in part to his body adjusting to the new flow. We shall see!

I must confess I have been resting really well, too. I went to the parents lounge after the last update and Tim had to wake me up to eat at 1 p.m. I was shocked it was so late! I hadn't slept well last night so I'm definitely making up for it today.

Will update with changes. Meanwhile it's a good status quo.

Poor baby!

Blaze is not happy today, and understandably so. Between the pain from the surgery, the added headache, the nausia from the pain meds, the hunger....he's having quite a time. His blood pressure is high, they are trying a different one. Thankfully there are a lot of blood pressure medicines out there! I asked if this was unusual. Sarah, our nurse this morning, said that it is not uncommon for blood pressure to be high after an angioplasty and after the Glenn, so he has two strikes against him.

He's sleeping quite a bit and we're grateful for that. The trick is to keep him sleeping.

Tim and I have been sweetly kicked out of the room for a few hours. Blaze woke up, got sick all over himself and the dressings, looked around as if to say, "WHOA! Did you see that?" saw Tim and had a melt down. He became inconsolable with Dad standing so nearby and not picking him up. Another nurse came in and Blaze was fine after Daddy left. SO...we're going to hang out nearby but not in the room. If they just can't settle him, they'll come get us. I have a feeling it's going to be a long day!

We had a beautiful layer of snow on the ground here. Thankfully the roads aren't slick. The snow has moved out of the area now, we didn't have any problems with it.

Thanks for your prayers and encouragement!

Resting comfortably

I just called the hospital and his nurse said Blaze is "resting comfortably." Thank you, Lord! She sounded very happy and a bit surprised by the fact he sleeping peacefully. She said the only thing of concern at all is his blood pressure. It seems a bit high. High blood pressure is to be expected with this type of surgery, because of the re-routed blood flow and the veins needing to expand to accommodate the new routine. They gave him a different medicine to help. He's not bothered by this. I'm so glad it appears he's feeling pretty good right now.

So, we are praising God for his blessings and we know we have so many people praying for Blaze! It is SO encouraging to read the guestbook. Thank you all!

We know God knows exactly what Blaze needs, I also know how wonderful it is to know specifically a concern to pray over. The only thing at all that we know of at this moment, the only hitch we've run into at all, is his blood pressure. It's not a huge worry for us and we are confident it will go away, but it would be great if you would specifically pray over this issue.

Tim and I were discussing at dinner how strange this experience has been. The birth and early surgery were just so traumatic and we kept running into unexpected complications and the doctors were frustrated...that's such a scary feeling. When they called from the Operating Room today and the nurse said there were no complications and Dr. Huddleston was coming to discuss the surgery I thought, "He'll tell us what's really going on." He sat down and said there were no complications at all and I thought, "really? Just wait, something will happen." We keep waiting for the other shoe to drop and it hasn't. He's really doing amazingly well and we're still a bit nervous. We humans are funny things, aren't we? We've dared to approach the Maker of the Universe, the One with all power and wisdom, on behalf of our precious little one...and we're surprised at such a fantastic outcome! I'm so grateful tonight for God's graciousness and patience!!! I just want to jump up and down, yelling my excitement...I doubt the families surrounding me would appreciate it, though. HA! I am grateful, too, for the Ronald McDonald House and Room. It only costs $5 a day to stay the night at the House here and there are many generous groups in the area that provide nightly meals. Tonight a group of middle schoolers had prepared a simple, but very tasty meal...another blessing to add to the list! They even did the dishes!!! It's amazing how humbled a person can be from niceness. From unexpected monetary gifts, to people stopping at the hospital to ask about your child, from someone preparing a meal, to an organization providing a safe place to sleep at night, free Internet access and encouraging words...I am just amazed at every one's generosity and thoughtfulness. Thank you!

We love you!

Joy

He looks good!

We got to see Blaze for a short time a little after 2 p.m. He looks really good! He has some chest tubes for drainage, some flushness to his appearance and he's a bit bloated...but NOTHING like it could have been and what we were prepared for. Please pray that Blaze does not experience the horrible headaches and that he can rest today. Blaze is sedated, but he wakes up easily. We easily quieted him down and he went back to sleep. We told the nurse before we left our "Blaze calming techniques." Feeding him would really help! He'll have some pedialite around 7 or 8 p.m. Poor fellow!

I keep comparing this surgery to last, and this one has been so much easier. The previous surgery had complications and issues all around. This one had NONE! Last time his chest was open. This one it's closed and he's not even on a ventilator!!!! YAY!!! I'm sorry he is expected to have headaches from this one and be fussier, but this overall, has been a huge relief.

We're not totally out of the woods and we're not taking anything for granted. We praise God for how well Blaze is doing and thank you again for your continued prayers. What a blessing it is to have all of you prayer warriors intervening on our behalf! We love you!

Joy

He's out!

We just met with Dr. Huddleston. Blaze is out of surgery. There were no complications or problems. PRAISE THE LORD!!!!!! It'll be awhile before we can see him, but we're relieved and rejoicing.

Thank you for your continued prayers.

Surgery

It was a bit surreal this morning. I sat by my sleeping baby's bed, alternating between his sweet face and looking out at a beautiful view of the arch in a reddening sky. Knowing the day we were about to face it was just a moment that will forever be ingrained in my mind.

Blaze awoke a bit later. He seemed amazed to see both grandmas, mom and dad around his bed. He was happy to see us. The hunger awoke in him before too long and the nurse let me hold him. I was grateful.

We took Blaze down onto the surgery floor at 7:45 this morning. He went into the surgery area at 8:00 a.m. They let me carry him down, then he snuggled down into a doctor's arms and was carried back into surgery. They just called a few minutes ago to say that they had started the surgery. It should be about four or so hours now.

Before they took him, Tim and I were standing there with Blaze in the holding area. I had a refrain from an old song in my head, "I have the peace that passes understanding down in my heart..." And it's true. We're very calm and feeling peaceful this morning. Thank you for the prayers!

I will let you know when Blaze is out of surgery, or if we hit any snags along the way.

Joy

Heart Cath

I'm sorry I couldn't get this updated earlier today. It's been a rather trying and uncertain day. They were supposed to take Blaze in for his heart cath at 9:30, but due to complications with the patient ahead of us, they didn't come for him until after 11:30. The poor little guy was so hungry...and a bit fussy, though not as angry as I would have been in his situation. He couldn't have milk past 3:00 a.m. so things seemed a little rough for him for awhile.

The doctor today performing the heart cath gave us a head's up regarding 3 areas today that she said made her "raise my eyebrows." It was good to have the warning, they ending up needing to do an angioplasty (or a "ballooning") on his aorta today, because of some blockage. The surgeons prefer that they take care of these types of situations pre-op. Because they had to dilate his aorta, they wanted him monitored really well today. So he did not return to his room on the regular floor, but went instead to the Cardiac ICU. He was NOT happy upon his arrival to the unit. They finally gave him some really great medicine which sedated him, but he could still wake up and have his vitals checked. Unfortunately, when they use that drug he can't eat for another four hours. It's just now 9 p.m. and he should just not be allowed to eat for the first time today. They're hoping to pump him up with a lot of food before it's restricted again in a few hours for his surgery in the morning. To keep his leg still, I held him for a long time. He slept better when he was held, rather than in the bed. What a sweet and precious time that was for me. I needed that time. When I needed a break, Grandma Cathy came in and took over, until it was time for us to leave him for the night. He's in terrific hands and we left our cell numbers with his nurse in case we're needed.

We are going to be back at the hospital at 6:30 in the morning. Rounds start then and we want to listen in. We get to go with Blaze down to the operating floor at 7:15 where we will meet with the team performing the surgery and sedation, then the nurses will go over everything with us again. We will then go to a private waiting room. They will call with updates from the operating room every hour. It is anticipated that his surgery will be over at noon, give or take an hour. Afterwards, Dr. Huddleston will come out and meet with us. The nurses will need an hour to get Blaze back to the CICU and settled in before we can see him.

The surgery they will be performing tomorrow is called the Glenn. There is an artery that takes the used, de-oxygenated blood from your head and upper body and returns the blood to your heart. This surgery moves this artery and makes it so the blood no longer returns to the heart, but flows directly to the lungs, where it can be oxygenated directly. No middle man, so to speak. By the end of the third surgery, his heart will only have one job, to be a single ventricle. The Glenn is supposed to improve overall quality of life. Tim & I are a little concerned about that. If our Blaze is only on "half power" now...my goodness! We are not prepared for full-powered Blaze! HA! I'm sure we'll be amazed at the difference we see in him. He is so full of life and energetic now, I can't wait to see what he'll be like in a month or so!

Things for Blaze will be very different from his previous surgery. The first surgery required his chest remaining open for three days. This time his chest should be closed when he returns. However, he will have a horrible headache for a few days. His body will not be used to this amount of blood going to his head. It takes the body and the lungs some time to readjust, and during that time he will be very uncomfortable. He will also be swollen and flush during this adjustment period. The nurses call this "the cranky Glenn." Fortunately the medicine they gave him today will be used after the surgery and it will help him to be sedated and somewhat more comfortable.

We have been told by the nurses to just leave Blaze alone tomorrow. We are to check on him after the surgery, then leave to get some rest. He will need us on Saturday and he will demand full attention and energy. But tomorrow he will be miserable and need to sleep.

We are not looking forward to the painful reality, but we do know it is time for Blaze to have this done. His oxygen levels were very low. His appearance was so healthy, but things were rapidly growing worse for Blaze. We are so grateful for God's perfect timing. We felt terrible today for our hungry, drugged baby...and we dread the next few days, but we look forward to the wonderful lifetime ahead. It won't be like this for long, and I'm so thankful for that!

We got accepted into the Ronald McDonald House today. Tim's staying there tonight, my mom & I are staying at the hotel for this last night and Tim's mom is sleeping in the parent lounge at the hospital, so someone is near Blazey.

Today was hard and a bit scary at times. Hopefully tomorrow will go smoothly, but we know during his last surgery he had some complications. They are prepared to deal with those issues tomorrow, if needed. In the midst of it all, we say, "Blessed be your name" and trust that God has Blaze in His hands. We didn't know how this day would go and we're not even trying to figure out tomorrow, but we know we can trust the One who does know.

Thank you so much for the encouragement. What a blessing to have you in our lives! It's so nice to know we're not alone. :)

Joy

Better

I'm doing much better now. I was on the emotional side of things earlier. In my head I was picturing Blaze there in his room, all alone in the dark on a cold, hard bed. I called over to check on him. The lady who answered the phone said that his nurse was with another patient. I thought, "Oh, great." Then she went on to say, "But, I can tell you he's been out here with me most of the night." I asked if he was really upset. She said, "no" that he had a bottle and he was a bit fussy and they were trying to get him asleep. It was funny, though. Here I had him in my mind in a lonely state and he's been at the nurses' station, flirtin' with the girls! They all tell him how cute he is and comment on his big blue eyes. Ha! I am so relieved. I can go to sleep now.

Wow! The things it takes to settle a nervous momma! I'm going to go crash now. We're going over bright and early in the morning. We'll update this as we can. It's been a lifeline today. I so appreciated the encouragement and the prayers. I was hurting and the comments and prayers helped so much. Thank you.

We'll See...

We'll see how this goes! Blaze is asleep in his bed on 7 West. It was so incredibly hard to leave him. They said they'll call if they need us. My guess is I'll be over there very early tomorrow morning. The nurse suggested we leave and get really rested tonight so we'll have energy after his surgery and he needs our attention. That makes sense.

It turns out his Pulse-Ox is very low. That's the number that measures his oxygen saturation. SO...it's a good thing he's being watched over by the medical community. They have some very anxious nursing students helping out today...so he should be watched well. No monitors were hooked up when we left. I'm sure that will change soon. He does have his IV in so he should have plenty of fluid for tomorrow. He's eating like a champ!

It sounds weird to admit, but I really prefer to leave him in the Cardiac ICU, because he has one on one attention and he is constantly monitored. He doesn't have to wait for attention there. It's a good thing, though, that he's not there. I know that. It's just hard on a momma heart.

Thanks so much for your encouragement! We appreciate it more than you know.

St. Louis

After a great time visiting all of Blaze's grandparents, we're in St. Louis! It was tricky getting here today, our exit was detoured from the highway. It was quite an adventure, but we made it here in plenty of time.

Blaze's pre-visit went well. He handled the weighing in and pulse-ox just fine, ate a bottle for the first half of his echo, then had a bit of a melt-down. His x-ray was also a bit traumatic for him, but they got the shots they needed the first time.

We've been checked in at a hotel connected to the hospital since one p.m. today. The plan was for Blaze to go over tomorrow morning and get checked in for his heart cath. The nurse just called a few minutes ago and asked us to check him in tonight instead. Apparently his shunt is very narrow right now, and they want to get him pumped up on fluids before the cath. We had felt like this was a possibility, I think God was just nudging our hearts that direction. It was still hard to hear. We had our hearts set on playing with him tonight and spending extra time together before the admission. We have to have him over there before five. We're thankful we're close to the hospital. This could be much, much worse. God's timing is amazing.

The cath tomorrow is small, not like an adult cath. Blaze will not be cut or anything. They actually go in through an IV needle, amazingly enough. He won't hurt at all from the cath. That was nice to know.

Thank you for the prayers.

On the Road

Hello from Nevada, MO! Tim, Blaze & I are currently at my mom's house in Nevada. We left the job fair (that had thousands of job seekers, instead of the normal hundreds that we had in the past) yesterday and we headed north! We stopped in Springfield and had a nice visit with Blaze's Great-Grandparents. Then, we came to Nevada and spent the night at with my mom. Today Blaze got to spend time with his great-grandma here, too! We've gotten a lot of rest and Blaze is having a good time. He is fascinated with the big mirror and is dancing right now with grandma's help! He's been cooing and trying to talk today. Blaze got to watch a cat outside the window and tried to stomp at it. It's a game we play with Maggie at home. It was cute to see him try it with the cat. So much fun! We leave here tomorrow morning and will go to Jeff City.

We left Melissa and Maggie at home. It's nice to know Melissa has things under control there. It was hard for her to let go of Blaze yesterday which was totally understandable. We called her earlier today to check in with her and so Blaze could hear her voice. Everything was going well for her today! It was nice to hear her.

It's kind of funny in a way. We seem to be analyzing everything. We've stopped giving Blaze aspirin in preparation for the heart cath and surgery, and now we have some concern that the reason he is so tired is because his blood is thicker and his heart is working harder. We also are factoring in that he is out of his routine. It is hard for us to know if things we're experiencing are what every parent goes through, or if he's experience a heart baby issue. It will be a blessing to have this surgery behind us. Hopefully it will help with some of the wondering. We're just trying to be sensitive to his needs right now and not worry about things.

I wanted to let you know that I had talked with the cardiologist this past week and the actual part that the surgeons need to do should only take 15 minutes or so. Of course from the time they take him and hook him up to the ventilator and surgery then recovery will take about four hours. It was comforting to know this is a relatively short procedure.

Blaze is currently laughing and playing with a toy with Grandma. I'm going to go play, too! Thanks so much for your prayers. We are feeling calm and at peace right now, and for that we are so grateful.

Joy

We have a request for you. Other than "PRAY FOR US" we try not to make too many requests. This one isn't very challenging. Here's some background: there is a theme running throughout the Bible of spiritual markers. Especially in the Old Testament, when someone had an encounter with God or God did something for them, they were often instructed to build an altar to remember that place and what God had done. Tim & I have been so overwhelmed by how many people have prayed for Blaze and we feel that God has been doing miraculous events in our lives. Our request is that you either email us or post it under the comments section on the website, where you are, all of you wonderful prayer warriors. We want to know the town or area you are in as you pray for Blaze and our family. Tim & I will map out the locations on State, U.S. and World Maps. (And tell us the name of your church if you have requested prayer for us there.) So, if you send this email on, please be sure to let us know where the emails are going. Tim & I know that we are going to be encouraged to hear back from you, this isn't just for Blaze. This will encourage us now and be a tremendous blessing to Blaze when he is old enough to understand.

We're noticing some changes in Blaze. He is getting tired faster at night and wanting to go to bed earlier. This is a mixed blessing. We are concerned it is because of the blockage in his shunt that he is going to sleep earlier, but we're also relieved to get some sleep. Plus, we feel this might help him gain weight, it's hard to burn off calories as you slumber! He also is not liking to jump in his jumper as much as he used to. He is enjoying it more now that we raised the seat a bit, but his tolerance with it is much shorter than it was. It is hard to wonder about it all...and we do constantly wonder. It's the unknown that is so challenging right now. Tim & I are struggling with this upcoming surgery. We know God is in control and we are so grateful it is in His capable and loving hands. It is hard, though, to know your little one is going in for open heart surgery and there's nothing you can do for him, other than be there with him. While we know he has to go through this, we are hurting. We appreciate your encouragement more than you know.

Blaze is still doing really well. We do not want to sound all gloom and doom. At night he is scooting around his crib. He gets himself trapped in a corner and gets angry that he cannot get out of it. One night Tim and I just took turns going in his room and turning him around. It was so funny! His big thing now is to throw his pacifier. He has an amazing arm for such a little fellow! He can literally throw it across a room. I think he gets a kick watching us look for it. We actually have had to move furniture in order to retrieve it. He also loves a show on t.v. called "Imagination Movers." Who knew? We get a few minutes to accomplish tasks when this show is on. It is so funny to watch Blaze. He leans forward and really watches it. He is so fun. Early (really early) one morning, Blaze was not feeling well, he had a runny nose and he was having problems sleeping. He was fussy, so I rocked him and held him and he continued to fuss. So, I started making up a story about a little boy named Blaze and his doggy Maggie and all the fun adventures they had. I just talked and talked and talked (shocking, isn't it?) and I got to a point in the story where Daddy helped Blaze build a tree house and suddenly I had to stop. Blaze had put his hand over my mouth! I laughed and tried to talk some more to see what he would do...he made a noise like, Hush, Mom, left his hand over my mouth and went to sleep. SO FUNNY!!!! Blaze delights us. He is a fun kid and we are so blessed to have him.

We have our first Parents As Teachers visit tonight. They wanted to visit pre-surgery. We shall see how it goes! I am excited to learn new activities we can do with him. I think it will be beneficial, especially for Melissa who is at home with him for such a long stretch of the day.

We are gearing up for our St. Louis trip. We will be leaving immediately after the job fair on Saturday, Feb 14th. Tim & Blaze will be there to pick me up and we will head out to visit family for a few days before heading to St. Louis. We are so looking forward to meeting Tim's new nephew!!! It will be a highlight of that week! I plan on being back to work on March 2nd. On March 3rd, Tim & I have been asked to share our testimony on KLFC. You can listen online. The website is http://www.klfcradio.com/ . We're on at 7:30 CST.

Thank you so much for your continued encouragement and prayers. We will keep you updated through emails or through the website while in St. Louis. We will have internet access at the hospital. We're so blessed to have you in our lives!

Joy Gilzow

February 2, 2009

Blaze's surgery has been scheduled for February 20th, it will be in the morning. We will check in for pre-visit "stuff" on the 18th. This consists of things like a Echo, EKG, Chest X-Ray, Nasal Swab (for any illness), etc. The 19th Blaze will go in for a heart catheterization. This is a dye test to assess his situation. He will not be released from the hospital on the 19th since his surgery is the following day. The 19th will be hard, he will need to not move his leg for several hours following the test and will have to remain prone on the bed, but he will not be completely sedated. The open heart surgery on the 20th will eliminate the need for the shunt, thankfully, since Blaze's shunt seems to be closing. More about the surgery below.

His recovery time is supposed to be about a week following the surgery.

The second surgery is called the "Glenn" procedure. Basically they will re-route the blood flow in Blaze's body. They will make it so one artery is taken from the heart and connected to pulmonary circulation, or the lung "system" if you will. The shunt will be taken out. The lungs will have less pressure on them. This surgery really helps the upper half of the body. The third surgery will assist the lower half of the body, but that's a later discussion. Quality of life is supposed to improve, but I MUST say that Blaze has had EXCELLENT quality of life. He has never acted like a "heart baby". I believe that is due to your continued prayer support. We can't even begin to say "thank you." We appreciate the support and encouragement. It's what keeps us going.

Keep an eye on Blaze's website while we are in St. Louis! http://www.blazegilzow.com/