Updates

Tuesday, October 28, 2008

Hi all! We entered Blaze into a photo contest. He's entry #149.  The link below the email takes you directly to his picture. There's a suggested .25 donation per vote. Or you can vote once a day with a original paper ballot in the Springfield News-Leader for free. 
 
Blaze is doing amazingly well!  If you haven't seen his website lately, check out: www.blazegilzow.com. We have new pictures and updates on there. I try to update the site once a week. Blaze actually slept long periods at a time last night. What a blessing! Tim put one of the crib attachments that we have on "heartbeat." Blaze slept incredibly well. Tim's a genius! It never occurred to me that it would actually "work". I kept checking, in disbelief, the video monitor. One point, though, I thought, "He would cuss if he was able to right now." Blaze was laying on his side, holding his hands together in front of him. His pacifier had fallen out of his mouth. He's really good about taking his pacifier in and out of his mouth now with his hands, but he just couldn't get to it, the way he was laying. He was trying to get it with his open mouth…but it was just out of reach. He was so mad and determined to get the silly thing. I'm sure if he knew the words he'd have been saying them. Poor fellow! Other than that and waking up to eat twice, he was totally a sleepy boy! I feel so good today! It's amazing what a little sleep can do!!!!
 
Thank you so much for your prayers for Blaze. We also appreciate the votes for Blaze. We know we're being a little silly with the photo contest. We just love to celebrate the miracle of Blaze. Thanks for indulging us. 

Joy

Click here and see this baby in the Oh Baby Contest.

Friday, October 24, 2008

Blaze had quite the adventure this past weekend!  We took him to visit Grandpa & Grandma in Jeff City!  Grandma Becky had knee surgery, so we surprised her with our visit.  She's unable to drive or leave the house right now.  Since Blaze had never even been in someone else's house before, this was an experience.  Tim drove, Maggie sat next to him, Blaze and I were in the back.  The other third of the backseat had our bags in it, because Blaze's stuff took up so much room in the trunk.  Tim likes to feel prepared for anything.  We ended up taking his portable crib with the built in changing station with us.  Thankfully it folds down really well!  I thought it was a bit excessive to bring it with us, but later realized it made a lot of sense!  Blaze had his same bed and mobile…he was comfortable with "his stuff."  Blaze met his cousins, Annika (20 months) and Audrey (19 months).  Neither one paid too much attention to the baby…until their moms would hold him!  That sure got their attention!  Annika is going to have a baby brother in January, so this was a good experience for her.  At one point we propped him up between them and took lots of pictures!  It was fun to see the three of them together for the first time.  With Grandma being unable to join us for several things, or even supervise the meal…things got chaotic at dinnertime.  It was fun, though!  The girls were movin' and groovin'…into everything!  It was a terrific eye opener for me to know what we were looking forward to.  We all enjoyed our time there and getting to see everyone. 
 
Blaze enjoyed hanging out with Grandma on her bed.  He got a nose to nose view of their dog, Buddy.  He also got to see Maggie and Buddy play together.  They play rough with each other most of the time, so he got to see another side of Maggie.  He watches her a lot more now!  HA!  We celebrated Maggie's first year with us last Monday.  She loved her new toys.  Maggie and I were playing with one of them and I heard Melissa say, "Oh my gosh, look at him!" and Tim say, "Honey, look over here."  I looked over and saw Blaze.  He was sitting up on Dad's lap, bending over, staring at me and Maggie on the floor playing…with his mouth hanging open.  The pacifier had to be rescued from falling out of his mouth. It was so funny.  Melissa had decorated the house a little bit for the occasion.  Blaze was fascinated with that, too. 
 
TEETH!  Blaze has at least 3 teeth coming in.  You can't tell by looking, but your finger would sure notice!  Poor little guy!  He's doing fairly well with it, though he's not afraid to tell us when he's not feeling his best!  I pray for peace a lot for Blaze.  Peaceful sleeping and peace when he's awake.  It hurts a momma to hear her baby crying.  We can't do much for the pain since he's so little.  Thankfully it hasn't been too bad.
 
Blaze has been watching Tim a lot lately.  He watches him cook and wants to be able to see everything going on when Dad's in the kitchen.  I walked up the stairs the other day and saw Tim playing a video game…with Blaze sitting in his lap.  Blaze was fascinated with the colors and sounds…and tried to get his hand on the controller.  If you haven't checked out the picture gallery, now's a good time to check out the updates! 
 
Speaking of pictures…I entered Blaze into a baby photo contest.  Voting begins the last week of October.  I'll let you know how you can "vote" for Blaze when I know more info.  J 
 
Last night Blaze and I had another laughing session.  I'm loving his coos.  Lately he's been putting vowels and syllables together…especially when he's really mad and wants a bottle.  It's been fun to guess what he's "saying."
 
Things are good!  We don't have another doctor's appointment with Dr. Wherry until mid-November.  We're coasting along just fine!  Thanks so much for your prayers.  We still need and cherish them.  J
 
Joy

Blaze has become just a delight! He keeps growing and thriving! We are all just constantly amazed at our little guy. Lately, Blaze has been holding his bottle as we feed him. It's like he's trying to make sure we're not going to take it away. Suddenly, he'll knock it out of his mouth! We have little or no warning when this is about to happen. It makes feeding time more exciting! I'm trying to convince everyone in my household that he just doesn't have that great of control over his arms, he doesn't actually mean to throw his bottle, but after he knocks it from his mouth, he does a big stretch and by his body language it looks like he's rather proud of himself. It's as if he's saying, "Oh, yeah…I meant to do that!"  He also has learned to sleep with his pacifier laced into his fingers, which means, when his arms jerk him awake, he also pulls out his pacifier. I figure he's just saving time, he can yell faster with the pacifier out of his mouth! Last night he was waving it around in the air. I took it from his fingers, popped it back in his mouth and he was out again! We really make an effort to swaddle him up now before he goes to sleep, or he tends to wake himself up. For those who might not know, to swaddle a baby, you lay the baby in the middle of the blanket, hold his arms down and you tightly wrap each side of the blanket around him, so his arms can't flay around. Newborns you can swaddle the legs and feet, too, but he's too long for that now. He'd fallen asleep before being swaddled last night and jerked himself awake shortly after I laid him down. I went into his room picked him up again and said, "Now you've done it! You're going to get swaddled". He looked in my eyes and smiled and laughed. Apparently he doesn't mind getting swaddled! Since he's grown too long to get swaddled in the receiving blankets, we're using an afghan that was made for him. He looks so funny with just his head sticking out! Like a turtle on it's back. And speaking of growing...the onesies with legs and feet in them no longer fit well. They're great around the middle and there's no problem with his length…it's his feet! They're bigger than the 0-3 month clothing makers think they should be! We still use them, but it looks kinda funny!  
 
Melissa says he's an angel during the day. He's become just a happy, alert baby. We're having a lot less problems with him spitting up. What a blessing! At night he's very good…just awake! He wakes up on time for a bottle, then after the four a.m. bottle he's reluctant to go back to sleep. Every time I lay him down, he pops back awake! I'll see his big, alert eyes open on the monitor just moments after he gets back in the crib. I've been sleeping with him on top of me in the recliner from 3 or 4 a.m. on. It's just so much easier. 
 
Blaze is to the stage where he is very aware of who is around him. Lately he wants to be able to see Daddy, whenever Dad is nearby. I'll be holding Blaze in the living room, and his eyes will watch Daddy in the kitchen.  When Tim walks out of sight, Blaze gets fussy. It's so funny. He knows exactly who he wants now.  
 
I am so grateful for his determined spirit and attitude! The 10/13/08 issue of Woman's World has an article in it about a child born with HLHS. She is now four, has had all 3 of the surgeries and is doing amazingly well. Her daddy says it's like she has a heart and a half, she's so energetic. She had more complications than Blaze, too.  During the first surgery Blaze's heart went out of rhythm, this little girl had a stoke and seizures. She also was constantly blue until her third surgery, Blaze isn't blue at all. Thankfully! There were, however, several things that her mom experienced that we also had happen: plastic over the open chest, the choices that we were presented, the agony of knowing your little one is struggling. It's an interesting article. However, the title of it is "Never underestimate the power of a little girl!" I know she had a fighting spirit and a determination to make it and I am so encouraged by her story, but I also know Blaze doesn't get the credit for the miracles in his life. God gets all the glory for the miracle of Blaze and the miracles surrounding Blaze. Tim & I would have willed him to be this strong and healthy if we could have, but Blaze's strength and healing came from our Heavenly Father, who generously and mercifully answered the prayers and cries of His children. Thank you for joining us in those prayers! We are so grateful for our little boy…even when he's awake and bright-eyed at 4:30 in the morning. 
 
Tim & I left Blaze alone overnight for the first time since we brought him home. We celebrated our 4th anniversary in style! We haven't had a vacation since we went camping for our 2nd anniversary. Needless to say, this past year presented some challenges for us, so this break was especially sweet. Tim went all out and made it a terrific weekend, full of surprises. Mom came and watched Blaze for us. We were so grateful to get away for a bit and have a good night's sleep! Afterward, it was wonderful to come home! Blaze had been good for grandma, but she was confident he missed us. We were both ready to see him again, too. It was just perfect! 
 
If you haven't checked out his photo gallery in awhile, now is a good time to do so! We added some pictures last week! Be sure to check out the gallery next month, too. We have matching Halloween outfits for Blaze and Maggie! HA! Blaze tolerates his well. Maggie hates her hat, so we tend to leave that off. She tolerates her outfit, too, but she looks at us with big eyes, as if to say, "Are you kidding? Has it really come to this?" The few pictures we've taken are hilarious, especially of Maggie. I'm hoping we can get some photos of the two of them together.  We're working on getting them to stay next to each other. Neither one wants the other one to touch them. Even during the pregnancy, if Maggie laid against my tummy, Blaze would turn over to the opposite side to get away from her. This exact scenario, except Blaze is out in the world now, happened in the last couple of weeks. I was in the same chair and everything. I was holding Blaze against me, and Maggie came and barely touched Blaze as she sat on my lap, and the next thing you know, Blaze is crying and flops over to my left side, as far as he could get from her. Then he was fine. She sighed dramatically, but held her ground. We've tried propping him up against her for a photo op, and she tends to run off, leaving him to fall over on the couch cushion where she had been. Thankfully he thinks that's fun. Other times she will just randomly come and stick her nose against his, then run away! They are funny.
 
Blaze's next cardiologist appointment is Monday, October 13th in Springfield. Please keep us in your prayers. The last visit went amazingly well. Blaze was cooperative for most of it. We're hoping for that again. It's much easier for them to get an accurate idea of what's going on with his heart, when he is happy and cooperative! Please pray that Dr. Tong will have wisdom as he looks over Blaze. Pray that we will have the discernment to mention anything that should be mentioned to Dr. Tong and that we will have the right questions to ask. Also, please pray for a safe, easy trip to Springfield and back.

Thanks for your prayers!  We love to hear from you!

We've had all sorts of experiences since the last update! 
 
Blaze just sailed through his 2 month check up on the 19th!  According to their scales he weighed 11 pounds and 4 ounces!!!  He was 22 ½ inches long!  YAY!!!  He handled the shots really well.  He screamed when he got stuck with the first shot, he was calmer for the next two.  He settled downed rather quickly afterward.  The nurse giving the shot said he was surprised, he expected more of a fight and told Blaze what a little trouper he was.  I thought, "After everything this little guy's been through the shots were only a blip on his radar."  He was rather sleepy and subdued over the weekend.  Poor little guy! 
 
Our next cardiologist appointment isn't until October 13th.  It's my understanding that we'll have monthly check-ups, until closer to the surgery.  Our local cardiologist, Dr. Tong, is the one who determines when the next surgery will be.  It gets confusing at times.  The first time I tried to get Blaze's prescription refilled I thought I had to call Dr. Wherry's office, who told me to call St. Louis, who said Dr. Tong should take care of it.  We're learning!  In my mind the surgeons still had the authority over Blaze!  Now we know who to go to first, Dr. Tong!  I also mentioned to Dr. Wherry, during Blaze's "normal" 2 month check up, that everyone has said, "If he has a fever, get him to a hospital."  I asked her which hospital we should go to.  She said if we thought he could tolerate the trip to St. John's to call her from the car on the way there.  If we were scared he wouldn't make it to Springfield, we should have him go to Skaggs, they would stabilize him and get him to Springfield, but to also call her on the way there.  I'm praying we never get to that second scenario, but it's good to have a plan in place. 
 
And speaking of the plan…Blaze was sick yesterday (September 30th).  That was another new experience for us.  It was a "normal baby problem" but we wanted to make sure it wasn't affecting his heart…he wasn't wanting to eat and stopped having bowel movements.  Dr. Wherry was gone, so her associate, Dr. Spurling saw him.  She and Dr. Wherry interned together and are good friends, and she's very aware of Blaze and his condition (even saw his pictures on the website.)  She was encouraging.  Of course, when she walked in he was drinking his milk like nothing was wrong and had just filled his diaper.  She looked him over, said not to worry and showed me what to look for, when to be concerned.  He weighed in at 11 pounds, 13 ¾ ounces!  Anyway, we were leaving-feeling all nice and calm about the situation, and she said, "Oh, let's try the Pulse Ox before you leave."  The Pulse Ox is his pulse rate and oxygen level.  The tried it on his fingers, toes and even his ear lobe and they couldn't get it to work.  They borrowed another physician's and then they did not like what they saw.  The numbers we were seeing were normal numbers for Blaze.  For a regular baby it would be a problem.  I explained they were the "norm" for him.  Dr. Spurling looked at me and said, "We're going to have to have chest x-rays just to make sure he's not having heart failure."  The room swayed a bit before I could reply.  I suggested she call Dr. Tong's office.  I explained that this was normal.  She wanted to "be sure."  I'm all for being sure, so we took him down to urgent care.  She had written "STAT" across the order, so we didn't have to wait.  Blaze, who was feeling miserable already, was NOT happy to have an x-ray.  He's feeling somewhat better today, though last night he drank all of his milk and had normal diapers.  This morning he wasn't feeling very grand.  Around 5:30 he became restless and unhappy.  We gave him his medicines and his bottle at 6 a.m.  He was burped and diapered and still unhappy.  Tim had him on the other end of the couch and Blaze insisted on standing up.  I was sitting on the other end of the couch.  Blaze was holding on to Tim's fingers, but turned around to look at me.  He began shrieking and screamed "MAH!" and started to lean towards me.  I reached out and let him grab my fingers.  He held on and ran as fast as his little feet could go over to me across the couch.  If he weren't so upset, I would have laughed…I may have laughed anyway.  Tim said, "SEE!  He IS saying MOM!"  Tim has been declaring this for at least 2 weeks now, and I am still a little skeptical.  I'd be happier with it if he weren't using it in anger all the time!  HA!  The fact he's only 10 weeks old makes me a bit skeptical…but the fact he feels the need to call out for me and can walk with assistance…I just don't know what to think.  Who knows at this point!  Dr. Spurling's nurse called a few minutes ago to say that the x-rays indicated that Blaze wasn't having heart failure, but there did seem to be some congestion there that they felt was normal for a baby with Blaze's condition.  If he's still having problems, we're supposed to go back.  I must say I'm incredibly grateful he's not having heart failure, my assumption is that they would have called me sooner if he was. 
 
Friday, September 19th Grandma Becky & Grandpa Floyd came to visit!  Blaze went to a bonfire on Saturday night that Grandpa's work was hosting.  He was fascinated with the lights at the shelter house and ignored the fire.  Later we drove through Branson and he was easily entertained with the lights reflecting on the ceiling of the car.  It was fun.  On Sunday Grandma Cathy, Great-Grandma Nina and Uncle John came to see him for a couple of hours while Grandma Becky was there, too!  It's a good thing he was feeling so well, he was sure passed around with three grandmas in the house!!!  That night Tim & I took Blaze to eat with Grandma & Grandpa in a restaurant!  We were kind of to ourselves and Blaze was in an area where people could see him from a distance, but not breathe over him.  It was the first time we've eaten out and he's been awake, alert and not spent most of the time hiding in his car seat.  At one point an older gentleman came up behind me and started making goofy noises.  I thought, "What in the world is wrong with him?" then I realized he was "talking" to Blaze (Tim was holding him.)  We hadn't experienced total strangers doing that yet.  Tee-Hee!  That gentleman wasn't the only one that cooed at Blaze that night.  It was nice to have those "normal" baby moments.  J
 
My mom came so Tim & I could go watch the movie "Fireproof".  It was our first night out without Blaze.  It was strange, but we handled it really well.  I only called home once!  We had a nice time.  It was nice to be out together.  It was also nice to come back home to our little guy!  We also had friends over for the first time for a meal, since Blaze's arrival.  We had a great time with Chris & Martha.  Blaze was a little fussier than normal, but had some charming moments.  It's great to feel like we're somewhat social again!  Mom's coming again this weekend so Tim & I can celebrate our anniversary by ourselves.  October 2nd is our 4th anniversary!!  I am so blessed.
 
Thanks for your continued encouragement and prayers!  They are so appreciated!  I don't know what we would do without all of you and your sweet support. 

Blaze is 2 months old today (9/17/08)!  It's amazing how 2 months can feel like a lifetime ago!  In some ways the time has flown by, in other ways it's hard to believe it's only been 2 months!  Since the last update that was emailed, a lot has happened!  Here are some of the highlights: 
 
His 9/15 trip to the cardiologist went really well!  His lungs were clear and he is now off the diuretic!  YAY!!!  We increased the dosage of other medicines because he weighed 10 pounds, 9 ounces according to their scale!  Everything looked terrific and Blaze was wonderfully cooperative for that visit.  We had a happy baby during most of the time!  The x-ray earlier in the day…well, we won't mention how he acted during that.  Let's just say the x-ray technicians were confident there was nothing wrong with his lungs without even looking at the pictures.  J  I must say, though, that Dad gets a huge amount of "wonderful dad" points for taking Blaze to the x-ray by himself!!!  Very impressive!  Dr. Tong is really good about educating parents and explained the x-ray to us.  It's very surreal to be looking at a picture of your child's lungs/chest and having the wire loops that hold his chest shut pointed out to you.  Blaze also had an echo done on his heart that day and the technician explained to us the blood flow and pointed out how the blood was re-routed because of the surgery.  Instead of a "normal" blue or red flow, that part shows up green on the echo.  Very strange to see.  During the echo (which is basically an ultrasound on the heart) Blaze kept trying to roll away from the technician and towards us.  I said, "Blaze, you can't roll over yet, you haven't learned how!"  Tim said, "Shows what Momma knows, huh?"  The little stinker rolled over earlier that day, and none of us saw it!  Tim had laid him down for a bit and came back a moment later and found Blaze on his tummy somewhere other than he laid him down!  I couldn't believe it.  He keeps trying to do it again, but perhaps he doesn't want us to watch the effort.  Last night I found him in bed at a different spot than I laid him down.  I asked Tim if I had missed getting up with Blaze, I was worried that maybe I hadn't woken up, and he said no.  A bit later I was watching Blaze on the video monitor (Thanks Uncle Layton & Aunt Cathy!) and Blaze turned back to where I originally had him.  I was stunned. 
 
AND on September 11th, Blaze got his first "real" bath!  I know he was a bit old for it, but we had to wait for his incision to completely heal before we could give him a "dunking bath."  We waited a couple of days longer, just to be on the safe side, and tried it out that night.  He HATED being cleaned with just a wash rag, he LOVED being in his bath…until we washed his hair.  It was all downhill from there.  We have some pictures we'll be putting on the website soon.  They're pretty funny!
 
Until this past weekend Blaze was wonderful in his car seat.  Never had a boy and piece of safety equipment gotten along so well.  On Saturday I had to loosen the belt a bit, then we put him in the seat and buckled him up.  He was fine, went to sleep, then woke up in Target and would not stop crying!  My angel boy was not behaving as normal.  It must have been a fluke.  The next day, Tim & I took him to Wal-Mart.  Blaze wakes up in his car seat and starts shrieking again.  Tim took him into the restroom and changed his diaper while I ran around like mad, throwing stuff in our cart and ran to meet them in the back of the store.  At first I thought I might have missed them, then I heard the cries again.  An elderly gentleman left the room and shuffled towards me.  "That one yours?" "Yes, sir!" I reply, trying to sound positive.  He shuffled passed me, then came back a moment later.  "You want me to go in and tell him the calvary has arrive?"  "No, sir, his dad can handle it."  The gentleman shook his head and walked off.  Tim ran out a bit later and taking Blaze to the car, while I went through the check out line.  Even while riding around in the car, Blaze cried.  This was definitely a new experience for us, he used to LOVE riding in the car.  I'm hoping this is a very short phase!
 
Developmentally Blaze is way ahead of the game!  He's very alert and very aware of what's going on around him.  He has a mobile in his portable crib upstairs that he watches.  Unfortunately we've got maybe 2 minutes before the bears stop moving.  He is very vigilant in letting us know when it has stopped.  The mobile in his crib scared him at first, now he loves it!  What a blessing!!!  When we hold him, he prefers to be standing up.  He can hold up his weight for quite awhile.  He holds on to our fingers for support, but he loves standing.  He can also move across the portable crib, when he's put down on his tummy for "tummy time".  It's a scoot more than a crawl, but the fact he's doing all this really surprises me.  I keep telling him to be a baby just awhile longer, but he's determined to keep moving forward, which is, of course, how I want it to be.  It's just amazing to watch him grow and change in front of our eyes.  Speaking of changing, Tim & I are in full parental mode.  I was stung by a wasp the other day while holding him, then became grateful I got stung instead of Blaze.  Then the next day I took the diaper bag with me to work!  Tim is just amazingly wonderful with Blaze.  I couldn't ask for a better partner in all this.  He's doing a fantastic job.  He's very involved and actually likes changing diapers!  We're learning new things about each other all the time!  J 
 
Things are going well!  I've now added broccoli to the list of foods (onions, Mexican, milk, caffeinated soda) that I cannot eat/drink while I'm feeding Blaze.  Poor fellow!  Other than that, we're doing just fine!  Melissa was sick this past weekend, but is feeling better now.  I don't know how we'd do this without her!  She's wonderful with Blaze and we're so blessed to have her.  She's working a couple of nights a week at Books-A-Million and enjoys it.  Maggie still runs over to sniff Blaze whenever we bring him back home.  She's just checking to make sure we brought back the right baby.  J  He's very tolerant of her.  He tends to squirm when she sniffs his ear, but who wouldn't?  Ha!  J  They're a funny team.  
 
If you haven't looked under "Updates" lately on Blaze's site, you've missed one!  We're trying to add one at least once a week, so keep checking it out!  Meanwhile, please pray for our next doctor's appointment, which is Friday afternoon.  This is his 2 month check up, which will include vaccinations!  Yuck!  Please keep us in your prayers.  Grandpa Floyd & Grandma Becky will be coming to see him this weekend!  Hopefully he'll be feeling okay after the shots.  Please pray for safety for them as they travel. 
 
Thanks for the prayers and encouragement!

Joy

Thursday, September 11, 2008

Everything is going incredibly well!  I wanted to let you all know about a couple of upcoming doctors' appointments. On September 15th, Blaze will have a chest x-ray taken in the morning, then we'll take that x-ray to the cardiologist's office in Springfield. The x-ray is to make sure his lungs are clear…and if they are, we will be able to stop giving him one of the medicines! YAY! I cannot believe I did not tell you before, but on our last visit to the office, they could not find any fluid behind Blaze's heart. The doctors in St. Louis said it would take about 6 weeks for that blood to disappear…it was totally gone the next week. What a miracle!!! The other appointment that week is on Friday, Sept. 19th. It's a routine 2 month check up with our doctor at Skaggs! Again I say "YAY"…I love our "normal" visits.  He's going to get shots that day, though. So please pray for both visits to go well.  We're anticipating excitement over how well he is doing and how he is continuing to thrive. We're hoping Tim can go with us to the cardiologist. In fact, Tim is planning on handling Blaze's x-ray visit. I am very grateful. Blaze is becoming much more tolerant on diaper changes and going into the car seat, but I do not think he will be cooperative with x-rays at this point. We shall see!!!! 
 
Blaze continues to amaze us! He's doing remarkably well. Melissa has him "watching" a Disney or VeggieTale a day, while she eats lunch. He LOVES the music. Melissa is so good to write down when she feeds him or changes a diaper or if he is particularly fussy. It's been so helpful to know what's happened during the day and we look for patterns of when he's fussy, that sort of thing. Tuesday's notes included a section "Blaze doesn't like Hercules as well as Aladdin" and she told me that he does NOT like the "Water Buffalo Song" from VeggieTales.  Considering Blaze is just 8 weeks old, I think he has very discriminating tastes-Ha! Ha! He also knows who to root for, he cries when Jafar is on the screen!
 
Melissa and I took Blaze to "Celebration Worship" last Sunday night at church. There was a guest worship leader, a larger than normal choir, and fun lights. Blaze stayed awake for the whole thing! I couldn't believe it! It was very loud, especially the trumpet, so I would try to cover his ears up during the trumpet portion. The only time he cried that night was while I had his ears covered. I could see him scream and leaned down to hear it and decided that if I was the only one who could hear him, it was way too loud in there. I took him in the hall and he was so good. We hung out with another mom and baby in the lobby, until closer to the end of the service. I was very excited about how well he handled it all. What a blessing to be at church with your baby! 
 
Speaking of church, we also want to give everyone a "head's up" on our sporadic appearances. We're going to be the "Amazing Disappearing Gilzows" for awhile, I'm afraid. Tim & I will take Blaze to church and other activities as much as we can, but we're only going to be able to do that freely for another month or so. He'll stay home during the late autumn/winter months as much as possible. We've been strongly encouraged not to take him anywhere during that time, because of a highly contagious respiratory infection that goes around that time of year. Since a mere fever can cause Blaze to be hospitalized, we're just not able to take that risk. Tim & I will take turns going to church without him, but we wanted to explain our behavior. A home health nurse will come to our home and vaccinate Blaze against the virus starting the end of October, so we won't have to take him into the doctor's office, where all the sick babies are, for the shots. He is so healthy and strong it's hard for us to adjust our minds to the fact of the dangers of him getting sick. I can't tell you how much I dread these next two surgeries, but I will be really relieved when they are over and we can become involved again! Thanks for your patience with us!  It's an adjustment. 
 
On a totally different note, it is raining cousins for Blaze! Annika Jean Gilzow was born last year in February, she's Paul & Noelle's daughter (Tim's brother). Audrey Grace Gilzow was born in March of '07, she's Josh & Carla's little girl (Tim's brother). Ella Irene Coulter was born in January of 2008, she's Dan & Missy's daughter (Joy's cousin). Amazingly enough, all of these families live in Columbia!  Paul & Noelle are expecting another baby in January and now Dan & Missy just announced that they are pregnant again! WOW!!!! It's raining Columbia Cousins for Blaze!!! I'm positive at least one of these will be a boy-Blazey needs SOMEONE to pal around with during the holidays! 

Thanks to all who sign the guestbook! It's great to read the names of people we haven't heard from for awhile and receive the encouragement from those we have seen recently! If you want to email us directly, please feel free to send it to: gilzowfamupdate@live.com. Thank you for your prayers!!!! 

Joy

Tuesday, August 26, 2008 

Yesterday was my first day back to work!  Both days have been good ones, it's been fairly an easy to get back into the swing of things.  Blaze is at home with his cousin Melissa, who officially started as his nanny today and his grandma Cathy.  He came with his daddy to pick me up from work yesterday.  I'm anxious to see my little guy by the end of the day, but it helps to have a collage of his pictures nearby so I can stare at him when I need a Blaze "fix."  Of course I call to check on him during my breaks, too!  Some might question why I'm back "so soon."  Well, in order to keep in compliance with FMLA rules, I can only be gone for 12 weeks total in a 12 month time period due to a family member's illness.  So, I took off 6 weeks now and I will safely be able to take off 6 weeks this spring when Blaze is projected to have his second surgery, and not have to worry if I have a job to come back to!  I am feeling great...if you don't count the sleepiness factor!
 
Everyone has been asking how Blaze is doing...and in all honesty, he's doing amazingly well.  In fact, we received some wonderful news today. Our home health nurse was scheduled to come 3 times a week when he was released from the hospital, but she currently only comes 1 time a week, because he's doing so well. Today we were told that next week is our last home health visit, because he simply doesn't need them right now. What an AMAZING, UNEXPECTED BLESSING!!!!!!!!!! I just can't hardly believe it! They will come again this fall to give him shots in order to prevent a common childhood illness that puts even healthy little guys in the hospital (RSV).  And they will come if we need them, too.  It's so nice to know they're a phone call away if we need them!  But how terrific he doesn't need them right now!
 
Blaze is very strong and looks very healthy.  He is expressive, smiles when he hears our voices and laughs sometimes in his sleep.  We have a framed poster over our couch in the living room and he stares at it.  We love it when he notices Maggie, our cocker spaniel mix.  When we first brought him home she ran over to him and sniffed him and walked away. She was very interested in being with him and he completely and utterly ignored her until recently.  One day he noticed her on the couch above him, while he was in his vibrating chair.  He looked up, saw her face near him and looked shocked like, "What IS that?!? She's my sister?!?!"  He just had such a horrified expression on his face! I laughed.  Last Saturday Blaze and Maggie got nose to nose with each other, and he LOVED it!  He smiled at her and tried to reach out toward her.  He was very happy to be with her.  When he cries, if she can, she licks his toes.  If she can't lick his feet, then she licks whoever is trying to comfort him. J  So, Blaze is very alert and aware of his surroundings!  He loves his nursery.  When we put him on the changing table in his room, he is immediately fascinated by his puppy wall-border.  He watches us intensely, which also impressed our home health nurse.  Typically babies who have been in an ICU for an extended period of time don't bond with their families or with people.  They don't usually notice what's going on with people around them.  Not so with our little guy.  He even dances along with Daddy!  He will hold onto Tim's fingers for support while sitting upright on Tim's lap.  Tim will sing a song and nod his head, and Blaze will nod his head at the same time Tim does!  It's so fun. 
 
So, things are going very well.  In the words of our home health nurse, "He's doing better than anyone expected him to."  Tim & I know the only reason we have our little one living, in our arms, enjoying life with us and THRIVING is because of God's mercies.  We know this is a direct answer to prayer…and thank you to all have so faithfully prayed for us and Blaze.  He is proof God does answer prayer and that miracles still happen.  The day we learned that Blaze had a "significant" problem with his heart, we were asked if abortion was a consideration for us, we said no.  We were then told of compassionate care, which is what the doctors will do if they believe the child won't live, they will care for the mom and the baby, but they won't go to extremes to put the mom at risk.  That is why the doctors would not do a C-Section earlier.  Some of you know that we were told during the second day of labor that Blaze wasn't expected to live and we needed to decide ahead of time if the medical team should try to save him, or if we wanted to hold him and let him die in our arms.  We told them to fight for him, we'd hold him later, but they had to fight to save him.  Thankfully the situation they were worried about didn't occur and we knew seconds after birth he was going to live to go to Children's Hospital and await surgery.  If we had put faith in what we were seeing and what we were hearing from our medical teams, Blaze might not be here.  We give God, whom we DO trust, all the praise and glory for our baby's survival and the fact he is thriving now!  We would have missed out on so much without him in our lives.  I just can't imagine life now without him!  Thank you so much for your continued prayers.  We know there are scary times ahead and there will be set backs, but we know the Great Physician has a plan and a purpose for Blaze and we're trusting in Him. Tim & I also experienced a peace during that time, even during that horrible second day of labor when we knew things looked really bleak, it was the peace that passes all understanding, and we also know that was an answer to the many prayers being prayed over us.  So, thank you, thank you, to our dear friends and family who have been lifting us up in prayer.  Thank you, too, to everyone who has blessed us with gifts and those who brought us meals!  We are so blessed to have you! 
 
Joy