Thursday, August 30, 2012
Pictures
Sunday, August 26, 2012
A week of 1st's
This week I had many firsts in my life, I have so many I don't know where to begin. Well I guess I will start with mom thought I was starting to be a big boy and that maybe rice cereal would be good for me. I do like it but I think I get more on the outside of my face than I do in my mouth. Boy I sure do smile alot for mom so she just keeps feeding it to me and does these weird noises such as an airplane, train and many that to me don't make sense, hence the reason I just smile and coo makes her feel good!!!
Another big first for me was going out to eat for dad's birthday, we won't mention how young he is! Mom, Dad, Grandpa Grandma and I went out to eat at No Wake Bar and Grill. It's a little joint across the road from Summit Lake. I was having so much fun that I fell asleep on the way there, Dad says " He sleeps just like his mother does when she gets in a vehicle." I don't know what that means I'm just a baby. It was a good time from what I can recall. There were many people that wanted to look at me and not my dad after all it was his day not mine. Sorry dad.
My last and final first that I can recall for the weekend was that Mom, Dad and I went to church this morning as a family. Mom was sure worried on how I would behave so I took a nap on the way there to fool them that I would behave. Once I got into the church I woke up and was the perfect little angel that was according to my parents, I didn't even make one peep the whole time. Mom and Dad must of thought something was wrong with me, but I was just being quiet as a church mouse!
I know that I will have many more first to come and I can't wait!
In other news Mom has taken a job here in Oakland she will be a teller at the bank, that will be a big adjustment in my life. I would like to thank everyone that has prayed for me over the past 4 months, it has been greatly appreciated.
Love
Blaise Hartwell
P.S. I have pictures to upload but I'm not sure on how to download them, so mom will have to do that for me this week.
typed by Michael for Blaise
Another big first for me was going out to eat for dad's birthday, we won't mention how young he is! Mom, Dad, Grandpa Grandma and I went out to eat at No Wake Bar and Grill. It's a little joint across the road from Summit Lake. I was having so much fun that I fell asleep on the way there, Dad says " He sleeps just like his mother does when she gets in a vehicle." I don't know what that means I'm just a baby. It was a good time from what I can recall. There were many people that wanted to look at me and not my dad after all it was his day not mine. Sorry dad.
My last and final first that I can recall for the weekend was that Mom, Dad and I went to church this morning as a family. Mom was sure worried on how I would behave so I took a nap on the way there to fool them that I would behave. Once I got into the church I woke up and was the perfect little angel that was according to my parents, I didn't even make one peep the whole time. Mom and Dad must of thought something was wrong with me, but I was just being quiet as a church mouse!
I know that I will have many more first to come and I can't wait!
In other news Mom has taken a job here in Oakland she will be a teller at the bank, that will be a big adjustment in my life. I would like to thank everyone that has prayed for me over the past 4 months, it has been greatly appreciated.
Love
Blaise Hartwell
P.S. I have pictures to upload but I'm not sure on how to download them, so mom will have to do that for me this week.
typed by Michael for Blaise
Tuesday, August 21, 2012
Sleep?!
Blaise's appointment on Monday at his pediatrician Dr. Groppe went very well. He weighed in at 12 lbs 9 ounces, which was not a huge increase from when he left the hospital. She agreed his increase from hospital discharge to Monday was not ideal, but when she looked back at his overall weight gain from our early July appointment to Monday, he was right on track. And that's even with a heart surgery thrown in there! His is keeping right on "his" growth curve. Basically his is still in the 3% of what a normal baby his age should weigh. She did not think we needed to put the feeding tube in at this point.
This morning, Blaise went to work with me for a few hours, then we went to our first follow up appointment with Dr. Hammel and his PA Carmen. They both thought his heart looked very good post surgery, and so did his xray. They also both agreed to not put the feeding tube in, but to do weekly weight checks. If his weight drastically decreases or he stops eating, then we will put it in. His saturation levels were at 83. I thought they might be a tad higher, but this sounds pretty good to me! As of now, he more or less has no restrictions on anything!
They also informed us that we can let Blaise tell us when he is hungry! But, we can't go longer than 4 hours during the day without giving him a bottle. At night, though we can go ahead and let him sleep through the night if he chooses!! WOW!
Otherwise, we have no further appointments with Dr. Hammel until we near his third stage surgery in two years. We will just continue follow-up with Cardiologist. Let's hope it stays this way!!
We have a feeding team appointment Monday at Childrens, Cardiologist appointment at Childrens the 31st, and a GI appointment at Childrens in September. Gotta love that place!
Blaise wants everyone to know GOD IS GREAT!
This morning, Blaise went to work with me for a few hours, then we went to our first follow up appointment with Dr. Hammel and his PA Carmen. They both thought his heart looked very good post surgery, and so did his xray. They also both agreed to not put the feeding tube in, but to do weekly weight checks. If his weight drastically decreases or he stops eating, then we will put it in. His saturation levels were at 83. I thought they might be a tad higher, but this sounds pretty good to me! As of now, he more or less has no restrictions on anything!
They also informed us that we can let Blaise tell us when he is hungry! But, we can't go longer than 4 hours during the day without giving him a bottle. At night, though we can go ahead and let him sleep through the night if he chooses!! WOW!
Otherwise, we have no further appointments with Dr. Hammel until we near his third stage surgery in two years. We will just continue follow-up with Cardiologist. Let's hope it stays this way!!
We have a feeding team appointment Monday at Childrens, Cardiologist appointment at Childrens the 31st, and a GI appointment at Childrens in September. Gotta love that place!
Blaise wants everyone to know GOD IS GREAT!
Sunday, August 19, 2012
One Year Later
One year ago today, Michael and my life changed for ever. We had spent the weekend with my parents and Jenna and Mitch at the Iowa State Fair. I had a pretty good idea that I might be pregnant, but on the way home Mike and I stopped in Blair at Walgreens and bought a pregnancy test. We got home Sunday afternoon and found out that we were in fact pregnant! Wow- how our lives have changed in a year. More than we could even imaged that day.
Blaise is doing really good. He is the BEST baby! Such a sweet angel, who loves to play now. He has learned to love his bouncy seat, and his car seat. He's even taken a ride in his swing. I love that I can now set him down in his bouncy in the kitchen and actually get stuff done! Usually when I perform my "song and dance" routine when feeding him, he does pretty good.
Tomorrow we have a pediatrician appointment in Fremont. I'm very anxious to see how much weight Blaise has gained since coming home a week ago. On Tuesday, we go back for our first follow up appointment with Dr. Hammel at Children's. We pray this appointment goes well and Dr. Hammel is very pleased with how things are going.
Mike is getting very busy with work, so I have a feeling it's gonna be Blaise and I quite a bit of the time now. He just left today and will be back on Wednesday night.
Thanks for all your prayers. We are feeling much more settled in our new routine.
Aunt Jenna and Uncle Mitch the morning after their wedding.
Man it feels GOOD to be home!
First time in my bouncy seat- it's great!!
I was 4 months old on the 12 of August!! The same day I came home from the hospital.
Look!!! No more car bed! I can ride in a regular car seat now!!! WAHOO!
Must have been partying at night at the hospital. Didn't want to go to bed for mom! A good video
Looking pretty stylish!
I'm wearing the Iowa State Fair shirt grandma and grandpa Sudmann got me.
The nurses and Grandma and Grandpa Hartwell had me dressed in my tux onesie that Uncle Mitch bought. I was ready to go as the ring bearer on wedding day!
Blaise is doing really good. He is the BEST baby! Such a sweet angel, who loves to play now. He has learned to love his bouncy seat, and his car seat. He's even taken a ride in his swing. I love that I can now set him down in his bouncy in the kitchen and actually get stuff done! Usually when I perform my "song and dance" routine when feeding him, he does pretty good.
Tomorrow we have a pediatrician appointment in Fremont. I'm very anxious to see how much weight Blaise has gained since coming home a week ago. On Tuesday, we go back for our first follow up appointment with Dr. Hammel at Children's. We pray this appointment goes well and Dr. Hammel is very pleased with how things are going.
Mike is getting very busy with work, so I have a feeling it's gonna be Blaise and I quite a bit of the time now. He just left today and will be back on Wednesday night.
Thanks for all your prayers. We are feeling much more settled in our new routine.
Thursday, August 16, 2012
How We're Doing
Blaise is exactly two weeks post surgery this morning! I can't even put into perspective the thoughts from that day versus today, and the amount of things that have happened between now and then! What a whirlwind. I keep thinking life might slow and down and become "normal" but I don't think that will ever happen. Last night it really hit me how incredibly lucky we are to have the second surgery behind us, and how amazing Blaise did. God is completely to thank for all of this. I could have never imagined how awesome the Glenn surgery would go.
We now have a bit more freedom with Blaise. Since he is only two weeks post surgery, we will probably take it slow at first, but we are ready to get out and about. We will still be very cautious, and make anyone who touches him wash or sanitize their hands, and ask that anyone who has been around someone sick or is sick themselves to not come in contact with him.
This week we have been working hard on feeding still. They gave us a minimum amount that Blaise can do before we have to put the tube in. He comes super close to it every day. Mike and I are really putting off putting it back in, because sometimes it can create more problems then help with feeding, as babies start to do even less and it irritates their throats. We have doctor appointments next week with our pediatrician and surgeon, so if we can hold off until then, we will see what they think we should do. I've tried every trick possible to get him to drink. One of his favorites is being outside. So, if you see me looking crazy walking down the street feeding him-you'll know why! :) Whatever it takes!
Both Mike and I are back to work. Grandma's have been babysitting and besides worrying about trying to feed him, it's been going ok. I'm hoping that some parents out there can assure me that sleep does eventually happen at some point. I'm not sure how Mike drives when he is tired. I can hardly stay awake to make it to work and back!
We pray for continued healing of Blaise's heart and continued success is his recovery. We pray for improvement in his eating. And most of all, we thank God for all he's done.
We now have a bit more freedom with Blaise. Since he is only two weeks post surgery, we will probably take it slow at first, but we are ready to get out and about. We will still be very cautious, and make anyone who touches him wash or sanitize their hands, and ask that anyone who has been around someone sick or is sick themselves to not come in contact with him.
This week we have been working hard on feeding still. They gave us a minimum amount that Blaise can do before we have to put the tube in. He comes super close to it every day. Mike and I are really putting off putting it back in, because sometimes it can create more problems then help with feeding, as babies start to do even less and it irritates their throats. We have doctor appointments next week with our pediatrician and surgeon, so if we can hold off until then, we will see what they think we should do. I've tried every trick possible to get him to drink. One of his favorites is being outside. So, if you see me looking crazy walking down the street feeding him-you'll know why! :) Whatever it takes!
Both Mike and I are back to work. Grandma's have been babysitting and besides worrying about trying to feed him, it's been going ok. I'm hoping that some parents out there can assure me that sleep does eventually happen at some point. I'm not sure how Mike drives when he is tired. I can hardly stay awake to make it to work and back!
We pray for continued healing of Blaise's heart and continued success is his recovery. We pray for improvement in his eating. And most of all, we thank God for all he's done.
Sunday, August 12, 2012
HOME!
What a weekend! We are officially home! The wedding went off beautifully, and Jenna and Mitch looked gorgeous and we are so happy for them! Blaise wore a tuxedo onesie on Saturday, in honor of him being one of the ring bearers. Mitch had found it last fall, before we even knew if we were having a boy! I'll upload pictures soon!
We were able to enjoy all of the events, and Grandpa Stew and Grandma Peg babysat for us on Saturday at the hospital. We could have gone home Thursday, but with the hectic weekend we decided to wait until Sunday. Hard to believe he was technically considered free to go home exactly one week after open heart surgery. Unbelievable- what an amazing trooper and warrior!
The most exciting news of all is that overnight Blaise did awesome on his feeding!! He did 90 almost every feeding, so this morning when we got to the hospital, they decided to pull out the feeding tube and let us go home without one in. We have regulations to watch, and if he doesn't stay where they want him for calorie intake, than Mike and I will have to put it back in. So far he's done 90 and both of his feedings at home. We thank God, for all he is given us. We feel so overly blessed and can't believe all He's done for us! We just know Blaise will continue to do good with eating.
Other than that, Blaise gets Prevacid for reflux once a day and Lasix three times a day. THAT'S IT! We don't have to weigh him, give him shots, check his saturation levels, etc. each day! He can ride in a regular car seat, go in a swing and bouncy chair etc. We just have to keep his incision clean. He cannot do tummy time for 6 weeks post-surgery.
We will still be pretty careful about keeping him in a "bubble" to avoid illness, but will venture out to church and the grocery store and other places with him. This winter, we will go back into hibernation at our home to avoid RSV and flu season.
Tonight, we will thank God for everything he has given us. We couldn't be happier!!!
We were able to enjoy all of the events, and Grandpa Stew and Grandma Peg babysat for us on Saturday at the hospital. We could have gone home Thursday, but with the hectic weekend we decided to wait until Sunday. Hard to believe he was technically considered free to go home exactly one week after open heart surgery. Unbelievable- what an amazing trooper and warrior!
The most exciting news of all is that overnight Blaise did awesome on his feeding!! He did 90 almost every feeding, so this morning when we got to the hospital, they decided to pull out the feeding tube and let us go home without one in. We have regulations to watch, and if he doesn't stay where they want him for calorie intake, than Mike and I will have to put it back in. So far he's done 90 and both of his feedings at home. We thank God, for all he is given us. We feel so overly blessed and can't believe all He's done for us! We just know Blaise will continue to do good with eating.
Other than that, Blaise gets Prevacid for reflux once a day and Lasix three times a day. THAT'S IT! We don't have to weigh him, give him shots, check his saturation levels, etc. each day! He can ride in a regular car seat, go in a swing and bouncy chair etc. We just have to keep his incision clean. He cannot do tummy time for 6 weeks post-surgery.
We will still be pretty careful about keeping him in a "bubble" to avoid illness, but will venture out to church and the grocery store and other places with him. This winter, we will go back into hibernation at our home to avoid RSV and flu season.
Tonight, we will thank God for everything he has given us. We couldn't be happier!!!
Friday, August 10, 2012
A Weekend Release?
Sorry for the lack of updates! We know you all have been wondering how Blaise is doing.
His heart has healed so well! His incision and drainage tube hole are both healing very good, and the nurses and doctors all say this too. He is on a variety of meds, but none specifically for the heart. His weight has continued to go up in large increases, and the doctors have watched this very carefully, as it does not correlate with his calorie intake each day, so they believe he is retaining some fluid. The biggest concern about this is that it's not fluid in his lungs. He gets a chest xray each morning to make sure that this is not happening, and outside of one small spot that has already gone away, no additional ones have shown up. Because of this fluid retention, he is on a high dosage of lasix three times a day. We continue to hope this helps do the trick.
Yesterday he had both an ECHO and an EKG and when I ran into Dr. Abdullah last night (one of the surgeons who also scrubs in on Blaise's surgery) he said he had viewed the ECHO of the heart and things looked good. We will wait for Dr. Danford, the cardiologist, for that official report. Blaise also had another heel prick for blood this morning.
Blaise has decided to become somewhat cranky. We don't think he ever got the huge Glenn "headache" we were warned about, but is just more irritable. I personally think he is sick of all the pokes and prods and constant annoyances and pain he is put through. Since I've been in and out so much the last two days helping get ready for the wedding, the nurses have had quite a bit. Evident ally he just wants to be held. He's developed an incredibly loud scream! Lots of comments on how great his lungs are!! I definitely don't blame him- I'd be sick of getting woke up 10 times each morning too!
On to the biggest battles we face each day- eating! None of us can figure this out. He will have a fairly "decent" day of doing 60 cc's somewhat consistently, then fall back to zeros'. Yesterday was one of those days when he didn't drink anything from the bottle for most of his feeds. Luckily, last night at 9 he did 60 for me, and Lindsay our night nurse got him to do 60,75, and 60. Obviously not even close to what a normal baby eats, but each step is progress. I'm really nervous being gone all weekend and not being here to feed him, but all will work out. We will for sure be going home with a feeding tube. This will take some practice getting used to at home. I told our nurse this morning my ultimate goal is to ditch the tube in a month, but my long term one is to have him eating good enough to be done with it by Christmas. Mixing his milk is such a math/science project! We mix 3 ounces of breastmilk with 1 teaspoon of Enfamil to fortify his milk to 24 calories. Then we mix 4 ounces of that milk with 1 packet of Simply Thick food thickener to make the milk a nectar consistency.
The various doctors all feel that Blaise would be able to go home today. Mike still needs to learn to put the feeding tube in once. We decided with all of the hectic busy schedule with the wedding this weekend, it would be best for Blaise to stay in the hospital through Sunday. Mike and I probably wouldn't be able to give him the attention and care he deserves and we don't want to stress him out with staying over night at a hotel, different people and more. So, unless plans change, we've requested a release date of Sunday!
His heart has healed so well! His incision and drainage tube hole are both healing very good, and the nurses and doctors all say this too. He is on a variety of meds, but none specifically for the heart. His weight has continued to go up in large increases, and the doctors have watched this very carefully, as it does not correlate with his calorie intake each day, so they believe he is retaining some fluid. The biggest concern about this is that it's not fluid in his lungs. He gets a chest xray each morning to make sure that this is not happening, and outside of one small spot that has already gone away, no additional ones have shown up. Because of this fluid retention, he is on a high dosage of lasix three times a day. We continue to hope this helps do the trick.
Yesterday he had both an ECHO and an EKG and when I ran into Dr. Abdullah last night (one of the surgeons who also scrubs in on Blaise's surgery) he said he had viewed the ECHO of the heart and things looked good. We will wait for Dr. Danford, the cardiologist, for that official report. Blaise also had another heel prick for blood this morning.
Blaise has decided to become somewhat cranky. We don't think he ever got the huge Glenn "headache" we were warned about, but is just more irritable. I personally think he is sick of all the pokes and prods and constant annoyances and pain he is put through. Since I've been in and out so much the last two days helping get ready for the wedding, the nurses have had quite a bit. Evident ally he just wants to be held. He's developed an incredibly loud scream! Lots of comments on how great his lungs are!! I definitely don't blame him- I'd be sick of getting woke up 10 times each morning too!
On to the biggest battles we face each day- eating! None of us can figure this out. He will have a fairly "decent" day of doing 60 cc's somewhat consistently, then fall back to zeros'. Yesterday was one of those days when he didn't drink anything from the bottle for most of his feeds. Luckily, last night at 9 he did 60 for me, and Lindsay our night nurse got him to do 60,75, and 60. Obviously not even close to what a normal baby eats, but each step is progress. I'm really nervous being gone all weekend and not being here to feed him, but all will work out. We will for sure be going home with a feeding tube. This will take some practice getting used to at home. I told our nurse this morning my ultimate goal is to ditch the tube in a month, but my long term one is to have him eating good enough to be done with it by Christmas. Mixing his milk is such a math/science project! We mix 3 ounces of breastmilk with 1 teaspoon of Enfamil to fortify his milk to 24 calories. Then we mix 4 ounces of that milk with 1 packet of Simply Thick food thickener to make the milk a nectar consistency.
The various doctors all feel that Blaise would be able to go home today. Mike still needs to learn to put the feeding tube in once. We decided with all of the hectic busy schedule with the wedding this weekend, it would be best for Blaise to stay in the hospital through Sunday. Mike and I probably wouldn't be able to give him the attention and care he deserves and we don't want to stress him out with staying over night at a hotel, different people and more. So, unless plans change, we've requested a release date of Sunday!
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