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!
Tuesday, August 7, 2012
An Update- Finally!
Life seems to be going a hundred miles an hour!
Blaise's recovery seems to amaze even the doctors at the hospital. He was considered released from the PICU less than 24 hours post-surgery and ready to go up to the 5th floor. He has lost every single tube and iv at this point. The only thing he is connected to are his leads and pulse ox, but even those he only needs to be connected to when we aren't in the room with him. What an amazing boy. He is far and away the most brave boy, and our hero. He has pooped and peed lots, and his blood pressure has gotten back under control on it's own. He has a small pocket of fluid on his lungs yesterday, but that has cleared up today. Our struggle now is the exact same thing that brought us into the hospital- his eating. Unfortunately, the surgery seems to have done nothing to improve his eating. They gave him until today to try and catch on by himself, but he never did so. Therefore, this morning mom inserted his feeding tube by herself for the first time. I'm almost convinced this is as hard or as scary as giving him his shots. Luckily, once its in, it can last a month unless he decides to pull it out. Big challenge for mom and dad now- as his hands are always in his face. Feeding is the most frustrating thing Mike and I have encountered, but we try and remind ourselves that the life-threatening problem (his heart) is fixed for the time being and we can handle eating with other methods like the tube. We still try to offer the bottle before each feeding, then feed by tube.
We pray he overcomes this and his oral aversion goes away. Right now, he screams everytime the bottle nipple comes near his mouth. Some babies never outgrow this. Lots of rumors floating around the hospital, but I believe we will be headed home later this week, without any additional complications.
To go along with our busy week, Blaise will welcome a new cousin on Wednesday in Aberdeen.
My sister Jenna is getting married on Saturday. Michael and I are beyond overwhelmed and grateful for each and everyone one of you who have been praying and so supportive of Blaise. I'd like to ask that Saturday be about Jenna and Mitch and their special day together, the most important day of their life. I'll be doing my Maid of Honor duties to the best of my ability and making sure this day is 100% about the two of them and the celebration of their love. We will try and answer questions on Blaise if we have the chance, but both would like to focus our attention on celebrating that day. We thank you in advance for your understanding and thank you for joining us as we congratulate Mr. and Mrs. Boeck!!
Blaise's recovery seems to amaze even the doctors at the hospital. He was considered released from the PICU less than 24 hours post-surgery and ready to go up to the 5th floor. He has lost every single tube and iv at this point. The only thing he is connected to are his leads and pulse ox, but even those he only needs to be connected to when we aren't in the room with him. What an amazing boy. He is far and away the most brave boy, and our hero. He has pooped and peed lots, and his blood pressure has gotten back under control on it's own. He has a small pocket of fluid on his lungs yesterday, but that has cleared up today. Our struggle now is the exact same thing that brought us into the hospital- his eating. Unfortunately, the surgery seems to have done nothing to improve his eating. They gave him until today to try and catch on by himself, but he never did so. Therefore, this morning mom inserted his feeding tube by herself for the first time. I'm almost convinced this is as hard or as scary as giving him his shots. Luckily, once its in, it can last a month unless he decides to pull it out. Big challenge for mom and dad now- as his hands are always in his face. Feeding is the most frustrating thing Mike and I have encountered, but we try and remind ourselves that the life-threatening problem (his heart) is fixed for the time being and we can handle eating with other methods like the tube. We still try to offer the bottle before each feeding, then feed by tube.
We pray he overcomes this and his oral aversion goes away. Right now, he screams everytime the bottle nipple comes near his mouth. Some babies never outgrow this. Lots of rumors floating around the hospital, but I believe we will be headed home later this week, without any additional complications.
To go along with our busy week, Blaise will welcome a new cousin on Wednesday in Aberdeen.
My sister Jenna is getting married on Saturday. Michael and I are beyond overwhelmed and grateful for each and everyone one of you who have been praying and so supportive of Blaise. I'd like to ask that Saturday be about Jenna and Mitch and their special day together, the most important day of their life. I'll be doing my Maid of Honor duties to the best of my ability and making sure this day is 100% about the two of them and the celebration of their love. We will try and answer questions on Blaise if we have the chance, but both would like to focus our attention on celebrating that day. We thank you in advance for your understanding and thank you for joining us as we congratulate Mr. and Mrs. Boeck!!
Sunday, August 5, 2012
Photo Bomb!
Some pictures updates!
Hanging out before my Glenn Surgery
This is really more like 3 1/2 months since I got admitted on my three month birthday and we didn't have the tie or blanket packed!
Taken the morning before the Glenn surgery was done.
.JPG)
First time holding Blaise post- Glenn surgery
.JPG)
Poor baby, doesn't look quite as swollen this time around. I'm sure all the heart mom's can list every cord/iv wire coming out of me!
.JPG)
My room in the PICU. So glad I wasn't here very long!
.JPG)
Feeling miserable.
Back on the 5th floor!! Boy am I spoiled! Our old room wasn't ready when we first came up to the floor yesterday so they put us in a regular one. Mom and Dad might have mentioned that if our old room opened up (known as the "penthouse" because of it's size) that we might like that one back. When we walked in this morning all of our stuff, including Blaise was moved to the old room, and the nurses made him a welcome back sign!
Dad- what the heck is this thing on my arm?? Can't you get it off so I can suck on my fingers like I love doing?
Everyone is amazed with how GREAT I'm doing! Notice the pink cheeks?? All because of my new blood flow and circulation.
.JPG)
.JPG)
.JPG)
.JPG)
Saturday, August 4, 2012
Post Surgery Day 2-Update
Updated- Blaise gave us a smile this morning!!! He is such a smiley, happy baby so that was awesome to see!
We are so grateful for how amazing his recovery has gone! Our specific prayer requests for today are for him to poop and pee. They did a straight cath to remove urine at midnight, but still hasn't gone on his own. They also gave him an enema for bowel relief, we are hoping this picks up too.
Lastly, prayers for improvement to his blood pressure. This has been high since early last night. Waiting for rounds to see the doctors thoughts on this, and if they will medicate for it.
Still rumors of heading to 5th floor. We will update and let you know how the day progresses.
Update- We made it to the 5th floor a little after lunch today. A normal blood pressure should be 70 for him. His has been running around 120. They do not want it to go above 120. It went a bit lower and was 113 and 98, but the last few times has gone back up a bit. It sounds like this is not something typical for babies after the Glenn, but they've decided to watch it for a day before deciding to do something to act on it. Evidentally one of cardiologists that likes to do research read an article on a baby with a heart similar to Blaise's that had higher blood pressure. Prayers that this continues to go down.
Good news- his lower gi is working great! Lots of both pee and poop today! He is only on Tylenol for pain every six hours. How unbelievable!! I think I'd still need some sort of Morphine drip! He has an IV in his hand, his drainage tube, and pacer wires. The only meds he is getting is Zantac, and Lasix and Tylenol.
Tonight, his saturations have been running in the upper 80's. He has been fairly calm and comfortable, expect when he gets the hiccups, sneezes or coughs.
His eating hasn't necessarily picked up. Yesterday and this morning he was drinking 2 ounces (which was really good for him) but this afternoon and tonight has shown no interest and is back to his pre-surgery routine of getting mad when the bottle comes near him. We are still hoping the surgery helped with this and maybe it will keep getting better.
Michael and I couldn't imagine being any more proud of our baby. He is the toughest person I know, and such trooper. OUR HERO! God's blessed us more than we could have imagined!
We are so grateful for how amazing his recovery has gone! Our specific prayer requests for today are for him to poop and pee. They did a straight cath to remove urine at midnight, but still hasn't gone on his own. They also gave him an enema for bowel relief, we are hoping this picks up too.
Lastly, prayers for improvement to his blood pressure. This has been high since early last night. Waiting for rounds to see the doctors thoughts on this, and if they will medicate for it.
Still rumors of heading to 5th floor. We will update and let you know how the day progresses.
Update- We made it to the 5th floor a little after lunch today. A normal blood pressure should be 70 for him. His has been running around 120. They do not want it to go above 120. It went a bit lower and was 113 and 98, but the last few times has gone back up a bit. It sounds like this is not something typical for babies after the Glenn, but they've decided to watch it for a day before deciding to do something to act on it. Evidentally one of cardiologists that likes to do research read an article on a baby with a heart similar to Blaise's that had higher blood pressure. Prayers that this continues to go down.
Good news- his lower gi is working great! Lots of both pee and poop today! He is only on Tylenol for pain every six hours. How unbelievable!! I think I'd still need some sort of Morphine drip! He has an IV in his hand, his drainage tube, and pacer wires. The only meds he is getting is Zantac, and Lasix and Tylenol.
Tonight, his saturations have been running in the upper 80's. He has been fairly calm and comfortable, expect when he gets the hiccups, sneezes or coughs.
His eating hasn't necessarily picked up. Yesterday and this morning he was drinking 2 ounces (which was really good for him) but this afternoon and tonight has shown no interest and is back to his pre-surgery routine of getting mad when the bottle comes near him. We are still hoping the surgery helped with this and maybe it will keep getting better.
Michael and I couldn't imagine being any more proud of our baby. He is the toughest person I know, and such trooper. OUR HERO! God's blessed us more than we could have imagined!
Friday, August 3, 2012
Life in the PICU
Today was a GREAT day, we lost quite a few IV lines and are now able to be picked up. The O2 has slowly been reduced and hope to be off of it by this time tomorrow and have been able to take two ounces of skimmed breast milk when they put it in front of me. I know what you all are thinking skimmed breast milk!!??? The Dr.s' have decided that removing the bad fats and skimming the breast milk and adding MCT oil it helps with proper digestion of the good fats. In doing so they hope that the milk is not dispersed out the veins and drained off into the drain tube.
In other news the nurses told us that we were already 5th Floor material, I say great while mother on the other hand is very reluctant to this news. We continue to thank everyone for their thoughts and prayers that have been said for us over the last couple of weeks, we truly appreciate it.
Love The Hartwell's
Michael, Erin and Blaise
In other news the nurses told us that we were already 5th Floor material, I say great while mother on the other hand is very reluctant to this news. We continue to thank everyone for their thoughts and prayers that have been said for us over the last couple of weeks, we truly appreciate it.
Love The Hartwell's
Michael, Erin and Blaise
Night #1 Post Surgery
We were finally able to go in and see Blaise around 5 last night. Due to his "stridor" or langromylasia (not sure on spelling- but basically means weakened or soften airway) the breathing tube they put in must have irritated or affected this area more. He was able to be extubated in the surgery room, but once in PICU, his breathing was incredibly noisy/squeaky and he seemed uncomfortable. His blood gas levels were also low. They called Dr. Hammel, and he wanted to try everything before having to do a last-ditch effort of re-intubating. They tried a breathing treatment, as well as steroids to reduce swelling, and also turned him on his side to help airway open and close better. These things worked, and thankfully his blood gasses improved, and his "squeak" also improved.
Mike and I were relieved that his appearance seems much better than after this first surgery. However, he has just as many cords, ivs, wires etc, etc coming out of him. Nothing will break mommy and daddy's heart more than the cry that comes from your baby after having his chest and ribs cut open, and totally redirecting the circulation of blood in their body. So far, thank the Lord, he has been fairly consolable. He's been sucking his binky just like the Blaise we know well.
He is on 3 liters of oxygen, a sedation drug, morphine and tylenol. He has a drainage tube in, pacer wires, and central line and picc line. One of his line (not sure which) comes from his jugular vein in his neck. He also has iv access in his foot, a foley catheter, all of his lead monitors, and a brace on his wrist and ankle. He has one foot that is left untouched except for his hospital name band, which is what we like to touch :) Over night, they were able to get him off his heart rate medication. His saturation levels have been in the mid 70's.
This morning, they approved him getting some pedialite, so I was able to bottle feed him and he took 60 ml's of it! He was definitely a HUNGRY BOY! He also had his eyes wide-open looking at us during it.
Mike and I did go to the Rainbow House to sleep last night. He was under the watchful eye of two PICU nurses last night. We are so glad to have nurses we know and trust. Keep the prayers coming- we aren't completely over the hill yet, but Blaise so far has done great in recovery.
Mike and I were relieved that his appearance seems much better than after this first surgery. However, he has just as many cords, ivs, wires etc, etc coming out of him. Nothing will break mommy and daddy's heart more than the cry that comes from your baby after having his chest and ribs cut open, and totally redirecting the circulation of blood in their body. So far, thank the Lord, he has been fairly consolable. He's been sucking his binky just like the Blaise we know well.
He is on 3 liters of oxygen, a sedation drug, morphine and tylenol. He has a drainage tube in, pacer wires, and central line and picc line. One of his line (not sure which) comes from his jugular vein in his neck. He also has iv access in his foot, a foley catheter, all of his lead monitors, and a brace on his wrist and ankle. He has one foot that is left untouched except for his hospital name band, which is what we like to touch :) Over night, they were able to get him off his heart rate medication. His saturation levels have been in the mid 70's.
This morning, they approved him getting some pedialite, so I was able to bottle feed him and he took 60 ml's of it! He was definitely a HUNGRY BOY! He also had his eyes wide-open looking at us during it.
Mike and I did go to the Rainbow House to sleep last night. He was under the watchful eye of two PICU nurses last night. We are so glad to have nurses we know and trust. Keep the prayers coming- we aren't completely over the hill yet, but Blaise so far has done great in recovery.
Thursday, August 2, 2012
Glory to God! Blaise has Prevailed!!!!
Dr. Hammel just got done visiting with us. Everything went just as planned!!!!!!!!
We are so overjoyed by this news! God is so great and Blaise is a true miracle. We are SOOOO thankful for the miracle God has sent us. We are excited that we can share this miracle with each of you. Know that every single one of you made a diffrence and it's because of YOUR prayers!!!!!!!!
We pray for no complications in recovery, and all goes well.
Hallelujah GOD IS GREAT!!!!!!!!!
We are so overjoyed by this news! God is so great and Blaise is a true miracle. We are SOOOO thankful for the miracle God has sent us. We are excited that we can share this miracle with each of you. Know that every single one of you made a diffrence and it's because of YOUR prayers!!!!!!!!
We pray for no complications in recovery, and all goes well.
Hallelujah GOD IS GREAT!!!!!!!!!
Glenn Surgery Updates
11: 20 a.m. : Still in our room waiting. The nurses have called down a few times and it sounds like they might come for Blaise around noon. Poor baby spit up after his 6 a.m. feeding, which was the last time he was allowed to eat anything. We think he is getting hungry! The Hartwell's and Sudmann's must in fact be hungry, because the nice volunteer who stopped by with the snack cart just got attacked!
12:30 p.m.: We just handed Blaise off to the anesthesiologist.He was awake, but sucking non-stop on his pacifier. The nurse will be coming out to give us updates in the private waiting room. Our trust is in God.
1:29 p.m.: Dr. Hammel stopped in a few minutes ago to say he was going back to get started. Just now the nurse just stopped and said the incision has been made and Blaise did really great for them going under. His numbers look good so far.
2:10 p.m.: The nurse just came in and told us that he is successfully on bypass.
2:40 p.m.: The nurse just came in and said he is off bypass, procedure is done, Dr. Hammel likes how it looks and they are starting to close him. Dr. Hammel will be in soon to fully explain everything.
This same post will be the one we continue to update as we know more.
Praying!
12:30 p.m.: We just handed Blaise off to the anesthesiologist.He was awake, but sucking non-stop on his pacifier. The nurse will be coming out to give us updates in the private waiting room. Our trust is in God.
1:29 p.m.: Dr. Hammel stopped in a few minutes ago to say he was going back to get started. Just now the nurse just stopped and said the incision has been made and Blaise did really great for them going under. His numbers look good so far.
2:10 p.m.: The nurse just came in and told us that he is successfully on bypass.
2:40 p.m.: The nurse just came in and said he is off bypass, procedure is done, Dr. Hammel likes how it looks and they are starting to close him. Dr. Hammel will be in soon to fully explain everything.
This same post will be the one we continue to update as we know more.
Praying!
Wednesday, August 1, 2012
Twas the Night Before Glenn Surgery
Here we are. Our sweet precious baby will be handed over around 10-11 a.m. tomorrow morning. There is one surgery before Blaise, so the exact time is not known. Today the anesthesiologist came to explain procedures. Then Dr. Hammel came up and sat with us to explain everything, specifically risks ad unplanned problems that could arise. Lots explained, lots to take in. Some I'm sure I'll never remember, and some that might take a week to process. I've never been so amazed by modern medicine or so confident in a doctor or surgeon. Tomorrow, God will be using Dr. Hammel's hands and mind to repair our baby's heart. There are no other hands I'd rather have Blaise in.
Are we stressed? Yes- but no. Are we scared out of our minds? Yes- but no. We've known about this surgery since January 6th when Blaise was diagnosed at our fetal echo. Nothing really has changed since then. His coronary arteries more or less "threw us for a loop" but our mindset remains the same. We are living the path God's paved for us. No need spending our time nervous, because then we wouldn't enjoy the smiles, laughs and wonder.
In preparation for surgery, today Blaise has a chest x-ray, EKG, bath, nose swab and blood drawn. Of course it took an arm poke, heel prick and finger prick before they got enough blood. All that stress caused him to spit up twice. Beyond that, he's just been held. I'm guessing he hasn't been in his bed more than 20 minutes all day. Man, are we gonna have one spoiled baby on our hands when it's time to come home!! (and I'm totally okay with that!)
Our prayer warriors are so awesome!! We can all feel your prayers, and know Blaise does too! I can't even wrap my mind around how many prayers will be said tonight and tomorrow for Blaise. I KNOW God is listening!!
Lots of Love- Michael, Erin & Blaise
Are we stressed? Yes- but no. Are we scared out of our minds? Yes- but no. We've known about this surgery since January 6th when Blaise was diagnosed at our fetal echo. Nothing really has changed since then. His coronary arteries more or less "threw us for a loop" but our mindset remains the same. We are living the path God's paved for us. No need spending our time nervous, because then we wouldn't enjoy the smiles, laughs and wonder.
In preparation for surgery, today Blaise has a chest x-ray, EKG, bath, nose swab and blood drawn. Of course it took an arm poke, heel prick and finger prick before they got enough blood. All that stress caused him to spit up twice. Beyond that, he's just been held. I'm guessing he hasn't been in his bed more than 20 minutes all day. Man, are we gonna have one spoiled baby on our hands when it's time to come home!! (and I'm totally okay with that!)
Our prayer warriors are so awesome!! We can all feel your prayers, and know Blaise does too! I can't even wrap my mind around how many prayers will be said tonight and tomorrow for Blaise. I KNOW God is listening!!
Lots of Love- Michael, Erin & Blaise
Subscribe to:
Posts (Atom)