Monday, April 30, 2012
Update
Well the PA for Dr. Hammel called me back late morning and said to just keep an eye on his stools. The blood did continue but might be getting lighter. We will keep praying for this to go away and no other complications. Blaise has been more fussy tonight, so hoping it's not going to be a long night.
Home sweet home
Well night one at home is in the books! We didn't do too bad. Everything got unloaded into the house and we successfully gave him his shot and Lasix last night. We've been tracking his feeds every three hours and according to the new scale gained again last night.
We could use prayers right now for the blood in his stools to clear up. He hadn't had any more of this since our late night on Thursday, but right as we were changing his diaper to go yesterday it appeared again . They all discussed it and let us go anyway telling us to watch it closely. Well, his diapers had blood during the night, so about 12 hours after getting home I already made the first call back to childrens. We are waiting to hear back from them.
Sunday, April 29, 2012
Heading Home- A Family of Three!
This is what we've been waiting for the last nine months! We are heading home!! The doctors came in this morning to tell us the good news. We will be heading out on Dodge in a few hours! Of course, the emotions are pretty high right now, as we've always hoped this day would come!
Blaise is our hero, the best child a parent could ask for! God has proven to us how wonderful he is!
Of course Mike and I are nervous and, I myself am a bit scared to death of being all on our own with him, but what new parent isn't nervous bringing home a new baby?!? I guess, to us every new baby gets two shots a day and all sorts of additional meds, right?! We will plan on living each day to the fullest and enjoying every minute of our baby boy!
We are hoping to have enough room in the car to get all of his equipment home, and enough room in the house for Blaise to take over!
We ask for everyone to say additional thanks to God today and tonight for all he has done! We hope for Mike and I to stay calm and handle this new chapter in the book of life with joy and amazement.
We plan to keep updating frequently, as we work towards surgery number two!
Blaise is our hero, the best child a parent could ask for! God has proven to us how wonderful he is!
Of course Mike and I are nervous and, I myself am a bit scared to death of being all on our own with him, but what new parent isn't nervous bringing home a new baby?!? I guess, to us every new baby gets two shots a day and all sorts of additional meds, right?! We will plan on living each day to the fullest and enjoying every minute of our baby boy!
We are hoping to have enough room in the car to get all of his equipment home, and enough room in the house for Blaise to take over!
We ask for everyone to say additional thanks to God today and tonight for all he has done! We hope for Mike and I to stay calm and handle this new chapter in the book of life with joy and amazement.
We plan to keep updating frequently, as we work towards surgery number two!
Meeting Friends
As the talk of getting to go home gets a little stronger, Mike and I want to extend our most sincere thanks and gratitude by the overwhelming support we have received so far. We've learned so much through Blaise, and the reasoning why God placed him in our life, and one of those lessons is how amazing our friends and family and even strangers are. We've heard so many stories of the prayer chains Blaise is on, and of people praying for him across the United States. I'm pretty sure he has prayers in over half the states! Amazing how much one little person can touch so many people.
We would love to say thank you to each of you by giving you the chance to meet Blaise, but due to his highly fragile state this won't be entirely possible. The doctors have warned how life-threatening it will be if Blaise even gets a tiny bit sick. They have told us to not allow many visitors, absolutely nobody who even thinks they might be sick, etc. For the most part we will stay away from all restaurants, grocery stores, public areas with him as well.
Once we are allowed to head home, we are asking for a week or two to get settled. Mike and I have always joked that since we have such a big deck with huge glass doors, maybe we will have visitors come over to hang out on our deck and we will hold Blaise up to the window from inside the house for people to meet. This might be how we handle things for a little bit. We will also have lots of hand sanitizer, Lysol and masks to cover faces for any house visitors. This will be a standard rule for ALL visitors, so we hope nobody feels offended by this.
We hope that everyone understands these additional steps we are taking to keep Blaise healthy and give him the greatest chances through his next surgery. After surgery number two, these risks decrease quite a bit and we can become a bit more lenient.
Once again, we offer all of our thanks and praise to our wonderful God and Savior. His healing powers have reached Blaise and we are eternally grateful. We can't wait to spread the good works of God throughout the years through Blaise. His story is one we are ready to tell a thousand times! He is a miracle, there is no doubt about it. We think the doctors and surgeons would even agree!!
We would love to say thank you to each of you by giving you the chance to meet Blaise, but due to his highly fragile state this won't be entirely possible. The doctors have warned how life-threatening it will be if Blaise even gets a tiny bit sick. They have told us to not allow many visitors, absolutely nobody who even thinks they might be sick, etc. For the most part we will stay away from all restaurants, grocery stores, public areas with him as well.
Once we are allowed to head home, we are asking for a week or two to get settled. Mike and I have always joked that since we have such a big deck with huge glass doors, maybe we will have visitors come over to hang out on our deck and we will hold Blaise up to the window from inside the house for people to meet. This might be how we handle things for a little bit. We will also have lots of hand sanitizer, Lysol and masks to cover faces for any house visitors. This will be a standard rule for ALL visitors, so we hope nobody feels offended by this.
We hope that everyone understands these additional steps we are taking to keep Blaise healthy and give him the greatest chances through his next surgery. After surgery number two, these risks decrease quite a bit and we can become a bit more lenient.
Once again, we offer all of our thanks and praise to our wonderful God and Savior. His healing powers have reached Blaise and we are eternally grateful. We can't wait to spread the good works of God throughout the years through Blaise. His story is one we are ready to tell a thousand times! He is a miracle, there is no doubt about it. We think the doctors and surgeons would even agree!!
Saturday, April 28, 2012
Fun Facts About Blaise Andrew
It's another Saturday in the hospital. Luckily, a very uneventful Saturday. Besides routine vital checks, Mr. Blaise and mom dad really just hang out in his room. No other appointments or check ups today. The good news is that Blaise is turning into quite the little porker. On Friday he increased his cc intake quite a bit, and drank 60 a few times, and even had a snack of 30 in between a feeding in the middle of the night! This resulted in a much anticipated weight increase of 10 grams!!! YEA! Today he has been chugging right along, and as of his 2:00 feeding, is 30 cc ahead of this time yesterday. According to the cardiologist, they'll keep monitoring Blaise "a few more days." Since we've started off on the right direction, we know he'll keep on heading that way!
Since he hasn't gotten to meet anyone yet, here are some fun facts about Blaise.
1) He is named after Saint Blaisus, the healer of throats. We thought naming him after a Saint of Healing would be very appropriate. Andrew means warrior, or fighter. We also thought this had perfect meaning.
2) He has lots of very dark hair, but it actually has some light, highlighted tips, and his eyebrows are very light. They in fact look like they have a reddish tint, but dad refuses to think this.
3) You can tell exactly what he is thinking through his eyes. He has some pretty distinct looks of surprise and fear in his eyes.
4) He randomly scares himself all the time. He can be sound asleep and then jump and throw his hands straight in the air when he gets scared. This is really funny.
5) His hands have to be up by his face. He has been this way since the beginning, as he was like this in every ultrasound.
6) His two favorite things, that can console him at anytime, are his pacifier and being wrapped up tight in a receiving blanket. Do one of these two things, and he usually stops crying.
7) He can suck his pacifier like no body's business. He has been this way since the day he was born. Lots of the nurses have commented on how much he likes his pacifier.
8) He absolutely HATES getting his diaper changed. Of all the pokes and prods he has every day, getting his diaper changed makes him scream more than anything else. Mom and Dad usually tag team this, as the faster we get it done, the faster he calms down.
9) He is actually a very good baby. He rarely cries, or fusses. When he does cry, he pretty much goes all the way to screaming in an instant, and loves to hold his breath (and turn purple) when doing this.
10) He is for sure a nurse favorite. Several mornings when we get back, they have informed us that he spent the night being held at the nurses station. (Mom and Dad think this is great for the time being, but wonder what he'll be like at home in the middle of the night!)
We will try and think of some more to share with you~
Since he hasn't gotten to meet anyone yet, here are some fun facts about Blaise.
1) He is named after Saint Blaisus, the healer of throats. We thought naming him after a Saint of Healing would be very appropriate. Andrew means warrior, or fighter. We also thought this had perfect meaning.
2) He has lots of very dark hair, but it actually has some light, highlighted tips, and his eyebrows are very light. They in fact look like they have a reddish tint, but dad refuses to think this.
3) You can tell exactly what he is thinking through his eyes. He has some pretty distinct looks of surprise and fear in his eyes.
4) He randomly scares himself all the time. He can be sound asleep and then jump and throw his hands straight in the air when he gets scared. This is really funny.
5) His hands have to be up by his face. He has been this way since the beginning, as he was like this in every ultrasound.
6) His two favorite things, that can console him at anytime, are his pacifier and being wrapped up tight in a receiving blanket. Do one of these two things, and he usually stops crying.
7) He can suck his pacifier like no body's business. He has been this way since the day he was born. Lots of the nurses have commented on how much he likes his pacifier.
8) He absolutely HATES getting his diaper changed. Of all the pokes and prods he has every day, getting his diaper changed makes him scream more than anything else. Mom and Dad usually tag team this, as the faster we get it done, the faster he calms down.
9) He is actually a very good baby. He rarely cries, or fusses. When he does cry, he pretty much goes all the way to screaming in an instant, and loves to hold his breath (and turn purple) when doing this.
10) He is for sure a nurse favorite. Several mornings when we get back, they have informed us that he spent the night being held at the nurses station. (Mom and Dad think this is great for the time being, but wonder what he'll be like at home in the middle of the night!)
We will try and think of some more to share with you~
Friday, April 27, 2012
Late Night
Well, it's kind of the same story around here. Blaise has been eating pretty good- mom and dad are very proud of how he is doing! The surgeon and cardiologist were also pretty happy with how he did on Wednesday. However, when he was weighed Thursday morning, he hadn't gained weight, but lost 5 grams. Blaise did really good again Thursday (in our eyes- he was always above 50% and did about 40 cc's each time). However, his weight this morning stayed the same- no increase. We will wait for doctors to round and see what they have to say about possibly putting feeding tube back in or not.
He is really such a sweet, loveable boy who has the best expressions. The hardest part is seeing him get upset when he is poked and prodded. You can see in his eyes every time he gets scared and it is the saddest thing. Many parents talk about how hard it is to see their kids get shots, and I would say watching him go through everything he has to is about 1,000 times worse. It's hard knowing he has no idea what is going on. He has vitals taken about 8 times a day, which he hates! His cry/scream is heartbreaking!
Wednesday night, when changing his diapers, Mike and I noticed a little bit of blood in his stool. The nurse had the doctor on the floor come look at it, and they decided it wasn't significant enough to worry about. Last night, at about 9 pm, Mike and I noticed blood again in his stool, and it was a bit more this time. They doctors decided to go ahead and schedule an x-ray, re-test his lovonox (blood thinner levels) and pulled him off all of his feeds for the time being. Blaise had a pretty terrible night, as he went through the xray where they have to take off all blankets, clothes, diapers and hold him down tight on a cold hard table. He screamed non-stop. Then we came back upstairs to have blood drawn (he had just had this done the day before too) and of course it took two pokes and tries to get enough blood for their use. Again, non-stop screaming right during his feeding time when we couldn't feed him. We were able to console him enough until the xray results came back, which did not show anything bad. They went ahead and let us feed him. We were able to get back to the Rainbow House about 1 am. This morning they said his Lovonox levels were also fine, so waiting to see what they think the problem was. We are thankful that God once again showered us with his love during our late night prayers that everything would be okay!
In other news, Blaise has been part of our lives for two weeks! So hard to believe and so hard to imagine life before without him! What an incredible gift from God!
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It took dad about 10 tries to get this picture of Blaise showing his muscles and smiling!
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Blaise in his two-week birthday picture outfit!
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After getting his bath!
He is really such a sweet, loveable boy who has the best expressions. The hardest part is seeing him get upset when he is poked and prodded. You can see in his eyes every time he gets scared and it is the saddest thing. Many parents talk about how hard it is to see their kids get shots, and I would say watching him go through everything he has to is about 1,000 times worse. It's hard knowing he has no idea what is going on. He has vitals taken about 8 times a day, which he hates! His cry/scream is heartbreaking!
Wednesday night, when changing his diapers, Mike and I noticed a little bit of blood in his stool. The nurse had the doctor on the floor come look at it, and they decided it wasn't significant enough to worry about. Last night, at about 9 pm, Mike and I noticed blood again in his stool, and it was a bit more this time. They doctors decided to go ahead and schedule an x-ray, re-test his lovonox (blood thinner levels) and pulled him off all of his feeds for the time being. Blaise had a pretty terrible night, as he went through the xray where they have to take off all blankets, clothes, diapers and hold him down tight on a cold hard table. He screamed non-stop. Then we came back upstairs to have blood drawn (he had just had this done the day before too) and of course it took two pokes and tries to get enough blood for their use. Again, non-stop screaming right during his feeding time when we couldn't feed him. We were able to console him enough until the xray results came back, which did not show anything bad. They went ahead and let us feed him. We were able to get back to the Rainbow House about 1 am. This morning they said his Lovonox levels were also fine, so waiting to see what they think the problem was. We are thankful that God once again showered us with his love during our late night prayers that everything would be okay!
In other news, Blaise has been part of our lives for two weeks! So hard to believe and so hard to imagine life before without him! What an incredible gift from God!
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Wednesday, April 25, 2012
Picture Update
After meeting with the feeding specialist yesterday, Blaise's feedings went much better! Dr. Hammel came to visit first thing this morning and decided it was time to pull the feeding tube, and let Blaise try out feeding all by himself. This was a big change for mom and dad, as we don't have to stick to the strict schedule that had lined up, and instead of tube feeding him whatever he doesn't eat, he only gets what he does actually eat. This is a little more stressful because he cannot get dehydrated with his heart, and in order to gain weight will need to keep taking in the 60 cc's.
So, today has been a trial run without the tube and hasn't gone too bad. He has taken over 35 cc's each time, which is better than 50 %, so the tube will stay out for now. We are praying that he continues to do good and eating, and gets back to that 60 cc level and also gains some weight. The cardiologists indicate that they will watch him for a few more days and determine how he is doing before sending him home.
In other news- today Blaise had an ECHO done, had blood drawn (they had to poke him twice) and had a second feeding class. He really didn't like the first two of these and screamed non-stop for almost an hour and half. It was a long morning! Mom and Dad learned how to use the scale we will be taking home, the pulse oximeter that will come home with us, how to use the car seat bed, and it got installed in mom's car.
Now for some new pictures!!!
Wire free!! Holding Blaise for the first time anywhere we want!
Demonstrating the new feeding holding position. On his side!
No feeding tube!! Just this big ol' thing on my arm, which holds one of my lines in place.
So, today has been a trial run without the tube and hasn't gone too bad. He has taken over 35 cc's each time, which is better than 50 %, so the tube will stay out for now. We are praying that he continues to do good and eating, and gets back to that 60 cc level and also gains some weight. The cardiologists indicate that they will watch him for a few more days and determine how he is doing before sending him home.
In other news- today Blaise had an ECHO done, had blood drawn (they had to poke him twice) and had a second feeding class. He really didn't like the first two of these and screamed non-stop for almost an hour and half. It was a long morning! Mom and Dad learned how to use the scale we will be taking home, the pulse oximeter that will come home with us, how to use the car seat bed, and it got installed in mom's car.
Now for some new pictures!!!
Mom holding Blaise hook-up free!
Demonstrating the new feeding holding position. On his side!
Tuesday, April 24, 2012
Waiting on Weight
After a little bit of reflection last night, Mike and I realized we have now been away from home 13 nights. At times this seems like forever, and at times it seems like just yesterday I was pregnant and we were celebrating our Anniversary. When looking back at Blaise's journey we are thankful that there haven't been any additional complications during recovery from his first surgery. We are so thankful to God for providing this! As the team of nurses, doctors, surgeons and specialist prepare us to begin our new journey at home as family of three, the reminders of Blaise's incredibly fragile heart are often repeated to us. After a moment or two of having to remind ourselves of this, we remember to just enjoy every single day and not worry about the future. He is waaay to sweet and waay to much fun to do anything else! Plus, his heart seems to be working just fine for him at the moment, God indeed knew what he was doing!
So, rumors and comments about heading home sometime in the future have been floating around. The one thing holding us back is feeding and weight gaining. They need Blaise to be able to do more of his feeds by bottle, and he has had a few steps backward in this area. They also need him to consistently gain weight, and he has been losing an ounce or so each night. Today we met with a speech thearapist/suck, swallow, breathe specialist. He watched Blaise during a feeding, and showed us a different way of holding him while feeding, which is on his side. Blaise doesn't fight the bottle as much this way, and both times drank 25 cc's. We are hoping this just continues to increase! They have also upped his calorie intake again, adding more formula to his feeds, which should help him gain weight.
Mike likes to refer to the checklist of items that need to be completed before we can go home as a high school senior check off list. We've had to start writing a calendar of our appointments on the white board in Blaise's room so we don't forget anything! Some of the things we've accomplished so far: video on SIDS and shaking babies, infant CPR class, HIPS class enrollment, how to make our own fortified feeds, how to use stethoscope to check stomach for feeding tube placement, how to hook up syringe to feeding tube, how to give meds through feeding tube, how to measure out meds, how to track weight gain/loss/ SAT rankings and feeding habits daily in his journal. Mike gave his first shot of Lovonox last night, and passed with flying colors (however, Blaise thought otherwise). I get my chance tonight. We still need to learn how to put in the feeding tube, talk with home health care, and how to use the car bed car seat.
Earlier today Blaise got his Pic line removed, so he is now wire free, and able to roam. He just has a few leads and one small box attached that we can carry around with him. Holding him for the first time with no hook-ups almost felt like holding him right after he was born!! He stared right at us, and the moment was awesome!
Our typical days around here are pretty busy:
12:30 am- wake up for pumping
3:30 am - wake up for pumping
6:00 am- wake up for showering
6:45 am- arrive at Childrens
6:45 am- pumping
7:00 am- Give Lovonox shot, nurse shift changes
8:00 am- feeding (usually takes about an hour)
8:00 am- give Lasix and Vitamin D
9:00 am- grab breakfast
9:30 am- pumping
10:00 am- doctor rounds/ meetings
11:00 am- feeding
12:00 noon- grab lunch
12:30 pumping
2:00 pm- feeding
3:30 pm- pumping
5:00 pm- feeding
5:00 pm- give Lasix and Vitamin D
6:00 pm- grab supper
6:30 pm- pumping
7:00 pm- Lovonox shot
7:00 pm- nurse shift change
8:00 pm- feeding
9:30 pm- pumping
10:00 pm- head back to Rainbow house
* in between all of this we have lots of other procedures, appointments and visits that happen at random :)
We are enjoying Blaise so much, and love being his parents! Although there are very hard moments, we wouldn't change anything, God has given us great strength!
So, rumors and comments about heading home sometime in the future have been floating around. The one thing holding us back is feeding and weight gaining. They need Blaise to be able to do more of his feeds by bottle, and he has had a few steps backward in this area. They also need him to consistently gain weight, and he has been losing an ounce or so each night. Today we met with a speech thearapist/suck, swallow, breathe specialist. He watched Blaise during a feeding, and showed us a different way of holding him while feeding, which is on his side. Blaise doesn't fight the bottle as much this way, and both times drank 25 cc's. We are hoping this just continues to increase! They have also upped his calorie intake again, adding more formula to his feeds, which should help him gain weight.
Mike likes to refer to the checklist of items that need to be completed before we can go home as a high school senior check off list. We've had to start writing a calendar of our appointments on the white board in Blaise's room so we don't forget anything! Some of the things we've accomplished so far: video on SIDS and shaking babies, infant CPR class, HIPS class enrollment, how to make our own fortified feeds, how to use stethoscope to check stomach for feeding tube placement, how to hook up syringe to feeding tube, how to give meds through feeding tube, how to measure out meds, how to track weight gain/loss/ SAT rankings and feeding habits daily in his journal. Mike gave his first shot of Lovonox last night, and passed with flying colors (however, Blaise thought otherwise). I get my chance tonight. We still need to learn how to put in the feeding tube, talk with home health care, and how to use the car bed car seat.
Earlier today Blaise got his Pic line removed, so he is now wire free, and able to roam. He just has a few leads and one small box attached that we can carry around with him. Holding him for the first time with no hook-ups almost felt like holding him right after he was born!! He stared right at us, and the moment was awesome!
Our typical days around here are pretty busy:
12:30 am- wake up for pumping
3:30 am - wake up for pumping
6:00 am- wake up for showering
6:45 am- arrive at Childrens
6:45 am- pumping
7:00 am- Give Lovonox shot, nurse shift changes
8:00 am- feeding (usually takes about an hour)
8:00 am- give Lasix and Vitamin D
9:00 am- grab breakfast
9:30 am- pumping
10:00 am- doctor rounds/ meetings
11:00 am- feeding
12:00 noon- grab lunch
12:30 pumping
2:00 pm- feeding
3:30 pm- pumping
5:00 pm- feeding
5:00 pm- give Lasix and Vitamin D
6:00 pm- grab supper
6:30 pm- pumping
7:00 pm- Lovonox shot
7:00 pm- nurse shift change
8:00 pm- feeding
9:30 pm- pumping
10:00 pm- head back to Rainbow house
* in between all of this we have lots of other procedures, appointments and visits that happen at random :)
We are enjoying Blaise so much, and love being his parents! Although there are very hard moments, we wouldn't change anything, God has given us great strength!
Sunday, April 22, 2012
No News is Good News
Well, it's been pretty quiet on the 5th Floor, which we welcome with open arms, and thank God for providing us with days like these. The heart team has been through each day with reports of "he looks good", and it makes us so proud of Blaise to hear this! He is our hero, and we look at him and cannot feel more love, and be more proud parents of how tough he is, his fighting character and strength. How incredible and lucky that we get to experience a child blessed by God. Blaise is our inspiration and has taught us how strong love can be.
On the medical front, Blaise has done a great job of impressing everyone. He continues to get an EKG every other day, along with Lasix and Lovonox shots. He is starting to tolerate the shots a little bit more (either that or his parents are!) We think we might be ready to tackle learning this procedure Monday or Tuesday. Today one of the surgeon removed a few of the stitches on his chest, the rest should all dissolve.
Our biggest task right now continues to be his feeding. While not at 100% he has been fairly good at getting around 60% or so of his feed down each time. The doctors are fairly pleased with this, but would like to see it closer to 100%. Heart babies always have issues with feeding, so we feel pretty happy with what he is taking, but would love to see him take more. It's hard not to get discouraged, but when you see how hard he is trying, and how it makes him so tired we just try to keep thinking positive thoughts. Today he seems to be a bit more tired, and hasn't gotten down quite as much, but we know God has great things in store for Blaise tomorrow! We know he can do all 60!
Tonight we hope you join us in thanking God for all of the great things he has done for Blaise, and how well his recovery has gone. We ask for prayers for continued improvement with his feeding.
Love, Michael, Erin & Blaise
On the medical front, Blaise has done a great job of impressing everyone. He continues to get an EKG every other day, along with Lasix and Lovonox shots. He is starting to tolerate the shots a little bit more (either that or his parents are!) We think we might be ready to tackle learning this procedure Monday or Tuesday. Today one of the surgeon removed a few of the stitches on his chest, the rest should all dissolve.
Our biggest task right now continues to be his feeding. While not at 100% he has been fairly good at getting around 60% or so of his feed down each time. The doctors are fairly pleased with this, but would like to see it closer to 100%. Heart babies always have issues with feeding, so we feel pretty happy with what he is taking, but would love to see him take more. It's hard not to get discouraged, but when you see how hard he is trying, and how it makes him so tired we just try to keep thinking positive thoughts. Today he seems to be a bit more tired, and hasn't gotten down quite as much, but we know God has great things in store for Blaise tomorrow! We know he can do all 60!
Tonight we hope you join us in thanking God for all of the great things he has done for Blaise, and how well his recovery has gone. We ask for prayers for continued improvement with his feeding.
Love, Michael, Erin & Blaise
Saturday, April 21, 2012
Matters of the Heart
Many people have asked about Blaise's heart, and how it's developed, what the surgeons are doing and what the future holds. I'll do my best to explain what we know and what we've learned. Trust me, I definitely did not pay enough attention in my high school anatomy classes, but have totally relearned the heart structure. We studied up well in advance on what we found out through the ECHO's done in utero, were given "maps" of his special heart by the doctor that they drew out for us and also maps of plans for surgery. After Blaise had his heart cath done last Thursday, more developments were discovered- most specifically the structure of his coronary arteries, which further complicated matters.
Mike and I have realized that Blaise's heart structure does indeed fall on the most severe end of the spectrum when it comes to heart defects. We are often asked what the plan is to "fix" his heart. Unfortunately, there is no way to actually "fix" his heart, but instead go through a series of palliative surgeries which allows his heart to function in a different manner than a normal heart.
For those science buffs- here is an explanation of his heart structure: In a typical heart blood flows through the right ventricle to the pulmonary artery, and on to the lungs. In Blaise's heart, the valves in his pulmonary artery did not develop, thus causing the blood to enter his right ventricle and then not have anywhere to go. The strong pressure of this blood entering and not being able to leave caused coronary arteries to form between his left and right ventricle, and the coronary arteries are what flow blood to the heart muscles to make it pump. Thus, Blaise's right ventricle is coronary artery dependent. Because of this, the surgeons are not able to open up any of the valves in his pulmonary artery, because this change in pressure for his coronary arteries would be fatal.
The plan then, is to redirect the blood flow in his heart so that oxygen rich blood can reach his lungs through a different method. This is done through a three step, open heart surgery process.
Step 1: BT SHUNT: COMPLETE! Blaise's first round of surgery was to put a very small vortex shunt in his heart, directly allowing oxygen rich blood to reach his lungs. This shunt, however, does not grow with Blaise, and is only big enough to last until he is about 4-6 months old. They are unable to put in a larger shunt, because too much oxygen rich blood at this point is also a bad thing. To date, this first step of surgery has been largely successful, and one of the heart surgeons said this morning that the first 72 hours are the most critical so we've passed that point. However, the next six months are just as critical. This shunt can clot at any time, which would be fatal. This is why we will be giving him two shots of blood thinner each day, tracking every single one of his feeds, his weight gains every day and his STAT levels every day from home. They have learned this is the best way to see if their are any "signs" of the shunt not working.
Step 2: Glenn: In this process at 4-6 months Blaise will undergo open heart surgery and also be put on bypass. With his coronary artery situation, going on bypass and this surgery will be very serious. Here, the surgeons re-hook up the superior vena cava directly to pulmonary artery leading to the lungs, alleviating the need of the BT Shunt.
Step 3: Fontan: This is done at about 2 years of age or when he reaches 30 pounds. In it he will again go on bypass and the surgeons will finish connecting more of his heart directly to the lungs, finishing off what was started in the Glenn.
End Result: Blaise will function as a single ventricle heart, where most adults are a two ventricle. This surgery process has only been around for about 20 years, so long-term statistics are hard to determine. In addition, his coronary arteries also play a big role, as the pressures will need to remain the same in his heart.
The good news is God must have known what he was doing when creating Blaise's heart because so far, Blaise's heart seems to be working just fine for him! The doctors and surgeons think he is doing great, and we couldn't be more proud of him and how he is doing. We are thankful everyday for this wonderful gift and continue to give praise to God for all he has done for us. The many prayers being said daily are so uplifting and encouraging and have definitely been heard!
Mike and I have realized that Blaise's heart structure does indeed fall on the most severe end of the spectrum when it comes to heart defects. We are often asked what the plan is to "fix" his heart. Unfortunately, there is no way to actually "fix" his heart, but instead go through a series of palliative surgeries which allows his heart to function in a different manner than a normal heart.
For those science buffs- here is an explanation of his heart structure: In a typical heart blood flows through the right ventricle to the pulmonary artery, and on to the lungs. In Blaise's heart, the valves in his pulmonary artery did not develop, thus causing the blood to enter his right ventricle and then not have anywhere to go. The strong pressure of this blood entering and not being able to leave caused coronary arteries to form between his left and right ventricle, and the coronary arteries are what flow blood to the heart muscles to make it pump. Thus, Blaise's right ventricle is coronary artery dependent. Because of this, the surgeons are not able to open up any of the valves in his pulmonary artery, because this change in pressure for his coronary arteries would be fatal.
The plan then, is to redirect the blood flow in his heart so that oxygen rich blood can reach his lungs through a different method. This is done through a three step, open heart surgery process.
Step 1: BT SHUNT: COMPLETE! Blaise's first round of surgery was to put a very small vortex shunt in his heart, directly allowing oxygen rich blood to reach his lungs. This shunt, however, does not grow with Blaise, and is only big enough to last until he is about 4-6 months old. They are unable to put in a larger shunt, because too much oxygen rich blood at this point is also a bad thing. To date, this first step of surgery has been largely successful, and one of the heart surgeons said this morning that the first 72 hours are the most critical so we've passed that point. However, the next six months are just as critical. This shunt can clot at any time, which would be fatal. This is why we will be giving him two shots of blood thinner each day, tracking every single one of his feeds, his weight gains every day and his STAT levels every day from home. They have learned this is the best way to see if their are any "signs" of the shunt not working.
Step 2: Glenn: In this process at 4-6 months Blaise will undergo open heart surgery and also be put on bypass. With his coronary artery situation, going on bypass and this surgery will be very serious. Here, the surgeons re-hook up the superior vena cava directly to pulmonary artery leading to the lungs, alleviating the need of the BT Shunt.
Step 3: Fontan: This is done at about 2 years of age or when he reaches 30 pounds. In it he will again go on bypass and the surgeons will finish connecting more of his heart directly to the lungs, finishing off what was started in the Glenn.
End Result: Blaise will function as a single ventricle heart, where most adults are a two ventricle. This surgery process has only been around for about 20 years, so long-term statistics are hard to determine. In addition, his coronary arteries also play a big role, as the pressures will need to remain the same in his heart.
The good news is God must have known what he was doing when creating Blaise's heart because so far, Blaise's heart seems to be working just fine for him! The doctors and surgeons think he is doing great, and we couldn't be more proud of him and how he is doing. We are thankful everyday for this wonderful gift and continue to give praise to God for all he has done for us. The many prayers being said daily are so uplifting and encouraging and have definitely been heard!
Thursday, April 19, 2012
5th Floor
Today Blaise was able to move out of the PICU and up to the 5th floor at Children's. This is great news for him! However, it makes mom and dad a bit more nervous because instead of having a one on one nurse in charge of just him, he now has one nurse who is in charge of three patients. It will be hard to leave tonight, but we believe he will be in good hands. Plus its good practice for us since we will be totally in charge at home. He did better throughout the day on his feeds, and usually drank 30-40 cc of the 60 he is supposed to take. The rest he gets through his feeding tube. He was able to get several of his lines removed today, so it's easier to pick him up and snuggle now. This is our favorite thing! Blaise has also started getitng his blood thinner Lovonox shots twice a day. Mom and Dad will soon be learning how to give him these, as we will be giving him two a day until his next surgery to help keep the shunt in his heart from clotting. He absolutely hates these and screams each time. We are not looking forward to doing this. The nurses wil also probably start teaching us how to replace his feeding tube just in case he will need one at home.
Speaking of home, it sounds like we wil be here at least through the end of the month. He has scheduled EKG's every other day until then. The doctors really want to make sure his coronary arteries are somewhat stable before sending him one his way, as there is no "fix" to help with this structure of his heart.
A few people have been asking- Mike and I are staying at the Rainbow House which has been really great. It's only about 5 blocks from the hospital, and we really only sleep there at night. We have had some visitors, but unfortunately we have made the decision on recommedation from the doctors that Blaise does not meet anyone for risk of sickness. Mike and I are happy to come out and say hi to anyone and show lots of pictures, though.
Depending on how tomorrow goes, I'll plan on trying to update with a description of Blaise's heart and what the future holds. As always, we are so grateful for God giving us this wonderful, adorable, perfect little boy. He has answered prayers and continues to show us guidance.
Speaking of home, it sounds like we wil be here at least through the end of the month. He has scheduled EKG's every other day until then. The doctors really want to make sure his coronary arteries are somewhat stable before sending him one his way, as there is no "fix" to help with this structure of his heart.
A few people have been asking- Mike and I are staying at the Rainbow House which has been really great. It's only about 5 blocks from the hospital, and we really only sleep there at night. We have had some visitors, but unfortunately we have made the decision on recommedation from the doctors that Blaise does not meet anyone for risk of sickness. Mike and I are happy to come out and say hi to anyone and show lots of pictures, though.
Depending on how tomorrow goes, I'll plan on trying to update with a description of Blaise's heart and what the future holds. As always, we are so grateful for God giving us this wonderful, adorable, perfect little boy. He has answered prayers and continues to show us guidance.
PICTURES!!!
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Sorry it took so long to update pictures! We finally got our computer and camera in the same location. I tried to do them in chronological order. Ignore how his parents look in these photos & just check out how cute he is!
Wednesday, April 18, 2012
Full Feed Ahead
Well today was just kind of a a ho-hum day. We worked on feeds, as I said last night it shouldn't be hard for a Hartwell baby to eat but Blaise must have his mothers appetite. Seems to have a hard time getting 60 ml of milk down every three hours. We will continue to work on feeds over the next several days and hope that his appetite gets better and stronger every day. There is also talks about a move in the future, not home but a move. Tonight after rounds they talked about removing some more lines on him, which is always great news. Once again we thank everyone for the prayers, calls, texts, cards and even dropping in to visit Erin and I.
The Hartwells
The Hartwells
Tuesday, April 17, 2012
Slow and steady wins the race is what I've always been told. So today the nurses worked on increasing his feeds. For a Hartwell baby that should be no problem! With an increase of 5ml/ feeding every three hours with the goal of 60 ml. They had added the ever unfavorable NG tube last night, this was to help him get what they wanted him to drink down. Also this morning we were informed that Blaise had also had a big night out in the PICU, the nurses decided they couldn't let him down for the night so they took him out to the nurses station to be held and passed around all night. Good to know that he is well taken care of when we leave for the night.
Another big moment for the day was when Erin and I went out to eat off of the hospital campus by being taken out for supper by my parents. It was well needed and good to get away for just a bit even if it was for less than a hour. Once again we appreciate all of the phone calls, texts and most of all the prayers from everyone.
Love The Hartwells
Another big moment for the day was when Erin and I went out to eat off of the hospital campus by being taken out for supper by my parents. It was well needed and good to get away for just a bit even if it was for less than a hour. Once again we appreciate all of the phone calls, texts and most of all the prayers from everyone.
Love The Hartwells
Monday, April 16, 2012
Praise for Blaise
Blaise keeps putting check marks in the things to complete column! Today he went completely off any sort of air assist and is breathing on his own. He also lost some more lines. He has started eating completly from a bottle breast milk all day now. Mom and dad have done all the feedings and changed his diapers.
This morning all of the heart doctors had their weekly meeting and came to discuss with us afterwards. They heavily repeated the message from last Friday which is that Blaise's heart is built in a very very rare and difficult way. His coronary arteries are the source of most of this, and they explained again how serious his case was and how much unknown there is. They are not ready to go down the heart transplant route at this time.
We have decided that he is doing amazing and will enjoy each day and not worry about the unknown. We thank God for Blaise's strength and showing us so many miracles already. We pray for God to keep Blaise's heart happy and healthy.
This morning all of the heart doctors had their weekly meeting and came to discuss with us afterwards. They heavily repeated the message from last Friday which is that Blaise's heart is built in a very very rare and difficult way. His coronary arteries are the source of most of this, and they explained again how serious his case was and how much unknown there is. They are not ready to go down the heart transplant route at this time.
We have decided that he is doing amazing and will enjoy each day and not worry about the unknown. We thank God for Blaise's strength and showing us so many miracles already. We pray for God to keep Blaise's heart happy and healthy.
Sunday, April 15, 2012
GOD IS GREAT!!!!
After a very long day yesterday today seemed to be buzzing right along. We just knew that with all that we've endured over the past 24 hours something would have to turn around. I had spent the night in the PICU while Erin was still across the street at Methodist. I made my way down to Blaise's room and his nurse was just checking on him and mentioned that they might extubate his vent tube. After that great ray of hope I went across to check on Erin as she was to be released later in the morning. We made our way back acrosss the street to find out that they had infact taken out his vent tube and was now breathing on his own. Later in the day he would start to come out of his stuper from being sedated and would show us his eyes and a little bit of his personality.
But the greatest news of all came tonight when the nurse asked us if we would like to hold our child! Of course very reluctant at first, I sat down in the chair and the nurse carefully sat our miracle in my lap. With Blaise in my lap and Erin at my side we read him a nighttime story and document our first family picture with tears of joy. This is the day the lord hath made let us rejoice and be glad in it!!! We can't wait to see what tommorow brings.
But the greatest news of all came tonight when the nurse asked us if we would like to hold our child! Of course very reluctant at first, I sat down in the chair and the nurse carefully sat our miracle in my lap. With Blaise in my lap and Erin at my side we read him a nighttime story and document our first family picture with tears of joy. This is the day the lord hath made let us rejoice and be glad in it!!! We can't wait to see what tommorow brings.
Thank you
Blaise made it through surgery yesterday morning and held his own and stayed stable throughout the day. Before we left last night he was trying to wake up And would blink his eyes and kind of move. He was trying to start to breathe over the vent. We look at Blaise and are amazed at God's miracle in front is us. We feel so blessed to experience Blaise and ate so proud of how hard he is fighting. We hope for a quiet day of recovery today on God's day.
The next six or so months of Blaise's life are incredibly serious and critical until he reaches his next surgery. We will stay strong and so will he!
The next six or so months of Blaise's life are incredibly serious and critical until he reaches his next surgery. We will stay strong and so will he!
Saturday, April 14, 2012
Glory to God!
Hallelujah praise the Lord! Blaise is out of surgery! We thank God for this miracle! Join us in thanking Him!
Yesterday we found out God made Blaise's heart very unique. They were unable to do option
One because his coronary arteries are set up and connected very odd. In fact his heart is considered a very serious defect and is fairly close to a heart transplant candidate. Dr hammel met with mike and I about 8:30 last night to inform us he would be doing surgery at 7 this morning.
Blaise had a good night. He is on a respirator after the cath. I got to bathe him change his diaper and give him some milk on a q tip.
It's a long day will update once surgery is over. The end result goal after all three surgeries will be a one ventricle heart.
God is getting us through and providing us peace as we wait. Blaise has so much love and support! we are so thankful for God giving us the miracle of Blaise.
One because his coronary arteries are set up and connected very odd. In fact his heart is considered a very serious defect and is fairly close to a heart transplant candidate. Dr hammel met with mike and I about 8:30 last night to inform us he would be doing surgery at 7 this morning.
Blaise had a good night. He is on a respirator after the cath. I got to bathe him change his diaper and give him some milk on a q tip.
It's a long day will update once surgery is over. The end result goal after all three surgeries will be a one ventricle heart.
God is getting us through and providing us peace as we wait. Blaise has so much love and support! we are so thankful for God giving us the miracle of Blaise.
Friday, April 13, 2012
Surgery
Found out tonight by Dr. Hammel that they would be doing surgery on Blaise at 7:00 in the morning. Keep us in your thoughts and prayers. God knows his plan. Love The Hartwells
Thursday, April 12, 2012
First day of life
I am typing this from my iPhone so I apologize for misspellings! We will try and update more when time allows. Blaise was handed over to icu right after birth. He came out screaming and crying what a relief! He has a full head of dark hair. He has been breathing good since birth and he has been able to stay off oxygen. The nicu team at Methodist thought hebliiked great! He has great color too! Mike went with Blaise and after finishing up the c section they let me go see Blaise before he left for childrens. I got to hold him for a few minutes. mike followed him and so did both of our parents. He had an echo done on his heart and then dr danford and dr delaney, the cath surgeon, looked over them and met with mike. Blaise will have a heart cath done by dr delaney tmrw at 9 am. We ask for non stop prayers that the arteries look good and they can do surgery option one. If not we will do the three surgery process. Blaise is doing do so good and the nurses have fallen in love with him. We loves sucking and they got him to suck on a binky for a bit. He loves sucking on his fingers.
I got good news that at 7 tonight they Gould betransfering me to the Methodist hospital attached to childrens. I was able to see Blaise tonight and stare in awe of him. Father Paul came down late tonight and baptized Blaise- we are very thankful for this.
Prayers tonight for a successful heart cath and good news resulting from this.
I got good news that at 7 tonight they Gould betransfering me to the Methodist hospital attached to childrens. I was able to see Blaise tonight and stare in awe of him. Father Paul came down late tonight and baptized Blaise- we are very thankful for this.
Prayers tonight for a successful heart cath and good news resulting from this.
Blaise Andrew Hartwell
Blaise Andrew Hartwell arrived at 8:42 am. He weighed 6 pound 5 ounces and was 19.5 inches long. Everything went as planned Erin will rest at the hospital while Blaise has now been transported to Children's Hospital. Thanks for all the thoughts and prayers. Love The Hartwell's
Final Countdown
Well what was thought to be a quiet night of sleeping was none the less. Baby H's heart rate dropped a couple of times early in the night. Thinking that is was just a fluke deal was wrong, a couple times during the night it dropped again, which required a late night visit from Dr. Devries and a few shots to stop the contractions.Good thing dad is used to not having much sleep anyway. A little later in the night we decided that inducing might be risky due to the fact that Baby H can't withstand the contractions that Erin was having, so we decided that a c-section would be best. So at 8:00 or a little after that this morning Baby H willl be entering our lives. Soon Baby H will be here!!!!
Wednesday, April 11, 2012
Checked in at hospital
Dr. Devries called about 11 this morning and told us to come in at 6 tonight to be induced. We have gotten checked in and started on medication to soften the cervix. Pitocin will be started in the morning. There has been some contractions which aren't strong but last long. We ask for lots of prayers tonight that baby's heart stays strong during labor and delivery and the whole process goes smoothly without stress.
We are thankful for having time this afternoon to pack and prepare for the coming days.
We are thankful for having time this afternoon to pack and prepare for the coming days.
Tuesday, April 10, 2012
Waiting on Baby
First off, a quick Happy Second Anniversary to Michael! I know God put Michael in my life for an exact purpose and each day I am reminded of that! There is absolutely no way I would have made it through the last 5 months without him! He is definitely my rock.
Now on to baby news! (Or lack there of.) Today was my weekly appointment with the high risk doctors. Dr. Levine was out of the office, so I had a new doctor see me today. The ultrasound tech did all of the standard checks and measurements and determined that Baby H weighs in at 6 pounds 6 ounces. When the doctor came in, he indicated that this is only in the 10%. I honestly don't feel too bad about the size, as many babies are born all the time at this weight. However, for surgery bigger is better so I think everyone would like to see baby be quite a bit bigger. The doctor did not do an exam, so I'm not sure if I am any further dilated. I haven't been having any contractions that I'm aware of, so I'm guessing not much progress has been made. The doctor said he would visit with Dr. Levine when he gets back in a day or two, but thought Dr. Levine would not let me go past my due date because of the baby's small size. Our official due date is either the 14th or 15th, depending on which doctor you ask! So, I guess we will wait and see if we get a call from Dr. Levine to come in later this week for an induction, or wait until our appointment next week. Maybe Baby H will surprise us all and come on it's own before than! Everything else in the ultrasound looked great!
We are both very excited to see the miracle God has sent our way, and are so honored that he has chosen us as it's parents. Our lives have already changed more than we ever thought possible through this process, and our relationship with God has grown more than we could imagine. We are ready to take on whatever plans God has in place for us in the coming weeks, and are ready to shower Baby H with love beyond belief!
You've all been so faithful to us during the past few months. We promise to update as soon as we know anything, and plan on having my sister Jenna post updates if we are unable. Our prayer warriors continue to lift us up, and we are so excited to share God's miracle of Baby H with you all!
Thankful for this week:
1) Continued health of Baby H while "cooking"
2) Making it full term
3) The continued peace God provides us each day
Prayer requests:
1) Easy and stress-free delivery
2) Strength, peace and guidance to handle any tough decisions that we may need to make in the first few days of Baby H's life
3) Chromosome testing to come back negative
4) God to have created Baby H's heart is such a way that the best option for surgery is possible.
Now on to baby news! (Or lack there of.) Today was my weekly appointment with the high risk doctors. Dr. Levine was out of the office, so I had a new doctor see me today. The ultrasound tech did all of the standard checks and measurements and determined that Baby H weighs in at 6 pounds 6 ounces. When the doctor came in, he indicated that this is only in the 10%. I honestly don't feel too bad about the size, as many babies are born all the time at this weight. However, for surgery bigger is better so I think everyone would like to see baby be quite a bit bigger. The doctor did not do an exam, so I'm not sure if I am any further dilated. I haven't been having any contractions that I'm aware of, so I'm guessing not much progress has been made. The doctor said he would visit with Dr. Levine when he gets back in a day or two, but thought Dr. Levine would not let me go past my due date because of the baby's small size. Our official due date is either the 14th or 15th, depending on which doctor you ask! So, I guess we will wait and see if we get a call from Dr. Levine to come in later this week for an induction, or wait until our appointment next week. Maybe Baby H will surprise us all and come on it's own before than! Everything else in the ultrasound looked great!
We are both very excited to see the miracle God has sent our way, and are so honored that he has chosen us as it's parents. Our lives have already changed more than we ever thought possible through this process, and our relationship with God has grown more than we could imagine. We are ready to take on whatever plans God has in place for us in the coming weeks, and are ready to shower Baby H with love beyond belief!
You've all been so faithful to us during the past few months. We promise to update as soon as we know anything, and plan on having my sister Jenna post updates if we are unable. Our prayer warriors continue to lift us up, and we are so excited to share God's miracle of Baby H with you all!
Thankful for this week:
1) Continued health of Baby H while "cooking"
2) Making it full term
3) The continued peace God provides us each day
Prayer requests:
1) Easy and stress-free delivery
2) Strength, peace and guidance to handle any tough decisions that we may need to make in the first few days of Baby H's life
3) Chromosome testing to come back negative
4) God to have created Baby H's heart is such a way that the best option for surgery is possible.
Tuesday, April 3, 2012
A Much Anticipated Appointment
After last week's appointment and concern of umbilical blood flow, Michael and I were anxious to see how Baby H looked today! Thankfully, Mike was able to tag along as I think both of our fears were that they might find something that would cause a decision to induce or do a c-section sooner rather than later.
Of course the power of prayer is amazing. We were reminded of that again this morning when Dr. Levine announced that Baby H looked "great"! The ultrasound tech even echoed this, saying the same thing. Dr. Levine expressed he thought we had a happy baby that looked very good this week. The blood flow looked good, and there were no outstanding concerns at the appointment. After a quick exam, Dr. Levine also feels like Baby H will be staying put for at least another week. Of course, as any parent knows this could change within minutes, but we've now made it 38 weeks are are so very thankful!
We both got another big smile when the ultrasound tech finally got some 3D pictures of Baby H's face! After almost 8 ultrasounds and 2 echos, Baby H kept it's hands away from it's face and we got to make out a nose, eyes and lips! Hard to tell exactlly what we were seeing, but of course you could tell Baby H will be a cutie!
What a great appointment and gift God sent our way this week- during Holy Week- one of his biggest weeks! As Easter draws close, we feel closer to God than ever during this journey. What an incredible gift God gave each of us through Jesus and his death on the cross. He is Risen!
Of course the power of prayer is amazing. We were reminded of that again this morning when Dr. Levine announced that Baby H looked "great"! The ultrasound tech even echoed this, saying the same thing. Dr. Levine expressed he thought we had a happy baby that looked very good this week. The blood flow looked good, and there were no outstanding concerns at the appointment. After a quick exam, Dr. Levine also feels like Baby H will be staying put for at least another week. Of course, as any parent knows this could change within minutes, but we've now made it 38 weeks are are so very thankful!
We both got another big smile when the ultrasound tech finally got some 3D pictures of Baby H's face! After almost 8 ultrasounds and 2 echos, Baby H kept it's hands away from it's face and we got to make out a nose, eyes and lips! Hard to tell exactlly what we were seeing, but of course you could tell Baby H will be a cutie!
What a great appointment and gift God sent our way this week- during Holy Week- one of his biggest weeks! As Easter draws close, we feel closer to God than ever during this journey. What an incredible gift God gave each of us through Jesus and his death on the cross. He is Risen!
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