That's right folks, after only 4 months of capture and domination by this completely alien thing in our lives, and we are starting to see some normalcy again. Of course I am reasonably sure Laura is not an actual alien, but what better description for a semi gelatinous mass that squirms, wiggles (around our house we have combined the two words to form a new more powerful word squiggle), makes weird noises (which she will do for long periods of time, whether you are there to talk back to her or not) and completely dominates every aspect of our lives. She smiles almost constantly. Nothing like that big toothless grin to turn the day around. Perhaps further evidence that Laura might be an alien, she has unusual powers (as I just mentioned, her smile).
The girl is a mess. For a child that cannot move under her own power, she is all over the place. Tara and I live in constant fear of two things. First, that when she starts to crawl and walk we will never get any rest as she will be on the go. I had really better start getting into better shape. In truth this would be a great thing. She already shows incredible curiosity about her surroundings. We are very excited about reaching a time when she can explore them more thoroughly.
The second thing we live in fear of, is that Laura will be a constant talker. You know, the type of person that just never shuts up, no matter what you do or say to them to get them to leave you alone. As I said above, Laura is constantly making all kinds of noises, whether you are there or not. That is great. Tara and I encourage her constantly to be more vocal. But we are afraid that once she figures out how to form words, she will go from two and three words sentences to hours long dissertations on her stuffed animal in no time. God help us all. Actually, given her Down Syndrome I would be very proud of her if she were to make that leap.
Ok, now for the updates. By now Laura should be over 14.5 pounds. She had her 4 month check up and shots last week and she weighed 14 pounds 6 ounces. She is 24 inches long. This all means that she is above the 90% range for height and weight. That is great news. Everything I have described in the post so far continues to point to Laura's surgery being a complete success. We are incredibly grateful for that.
Other tidbits. We are down to 6 feeds a day. This means we have an 8 hour period at night where we can try to get some sleep. I hope we are able to further reduce her number of feeds in the not to distant future. Yes she sleeps very well through the night.
Laura has successfully rolled from her back to her belly all on her own. Tara and I were very excited to see this. Laura looked a little confused about how she had gotten that way, but once she got back onto her back again she tried to turn over again.
She is also starting to reach for things. Up until now, if she had something in her hand it was either placed there or she found it by accident. Now she pulls burp clothes off of shoulders to suck on them. She also reaches for toys that she can see in her stroller or carrier.
Most importantly, she is starting to figure out how to feed from her bottle. For over a month before her surgery she fed pretty much from an NG tube. She has fed primarily from the tube since her surgery. We work with her on almost every feed. She is constantly taking about 5 mL. But she usually has one feed a day where she will take more. This is a great thing.
So as you can see things are constantly changing around here. It is fun to see it all happening. I will try to get pictures up soon. We have some great ones.
Just a reminder, the Down Syndrome Association of Houston 2009 Buddy walk is November 14th at Jones plaza. There is still time to sign up to walk or donate to DSAH. To do either go to www.dsah.org. On the left side of your screen you will see the word Buddywalk. Click on it. Then in the middle of your screen you will see a link to the 2009 Buddywalk page. Click on that link. Then click on the link for Find Team. In the first blank field on the right side of your screen type Laura's Lions, and click the search button just below. Then click on the link to Laura's Lions team page. From there you can donate, sign up to walk or both. To all those who have already donated or signed up to walk, we cannot thank you enough.
Showing posts with label open heart surgery. Show all posts
Showing posts with label open heart surgery. Show all posts
Wednesday, October 28, 2009
Sunday, October 11, 2009
Laura's Lions
As many of you know my daughter, who has Down Syndrome, Laura Allison Schaefer had open heart surgery before she was three months old. The surgery was a complete success, and she is doing great.
The Lion in the picture below is her favorite stuffed animal. It was the first toy she really responded too. It was a great source of comfort to us while she was in surgery. We felt like it is a great representation of the way Christ watches over all of his people. Plus, it is an amazing reminder of just how many people were preying for Laura through that part of her young life. It helped to keep us all sane while she was in the operating room, and out of our care.
Now the Down Syndrome Association of Houston (dash for short) could use your help. They are having a Buddy walk on November 14th. Please check the link to the dash web site the right for more details. If you would like to participate on our team, Laura's Lions, I need to know no later than Thursday the 15th of October. This is so we can get you registered as a member of our team.
If you would like to donate your financial support please let me know. Funds that are raised will go to support Down Syndrome research
Our Team Captain is Laura's Grammy (Judy Johnson). However, all of Laura's grandparents and parents will be trying to get people to join our team. So the more the merrier. If you are available on November 14th come take a stroll with Laura, because each of you are already one of her Lions, we would love to have along.
The Lion in the picture below is her favorite stuffed animal. It was the first toy she really responded too. It was a great source of comfort to us while she was in surgery. We felt like it is a great representation of the way Christ watches over all of his people. Plus, it is an amazing reminder of just how many people were preying for Laura through that part of her young life. It helped to keep us all sane while she was in the operating room, and out of our care.
Now the Down Syndrome Association of Houston (dash for short) could use your help. They are having a Buddy walk on November 14th. Please check the link to the dash web site the right for more details. If you would like to participate on our team, Laura's Lions, I need to know no later than Thursday the 15th of October. This is so we can get you registered as a member of our team.
If you would like to donate your financial support please let me know. Funds that are raised will go to support Down Syndrome research
Our Team Captain is Laura's Grammy (Judy Johnson). However, all of Laura's grandparents and parents will be trying to get people to join our team. So the more the merrier. If you are available on November 14th come take a stroll with Laura, because each of you are already one of her Lions, we would love to have along.
Thursday, September 24, 2009
Getting back to a routine.
Well, we have been home for about a week now. In some ways it seems longer. In some ways it seems like only a few days. Laura is doing great. She either sleeps, or demands to be the center of attention.
As I have said in a previous post, this is new territory for Tara and I. Neither one of us wants the spot light. But all is good.
I am still amazed at how much more active she is than before the surgery. Everyday, she is awake a little longer than the day before. Everyday she fight sleep a little harder. This is going to make the coming years very interesting to say the least.
We had our first visit with Laura's E.C.I. therapist this morning. Liegh was very impressed with Laura's suck. This is big news, because as most of you know for almost a month before Laura's heart surgery she was feeding mostly through her NG tube. She just tired out so quickly when she would try to bottle feed. Tara and I kept doing Laura on her exercises as best we could once she was on the NG tube completely. We are hoping it will pay off soon.
Our plan, and Leigh agrees, is to start slow. We are continuing Laura's exercises from before her surgery. We are also putting a little of her food in just the nipple (not giving her a bottle yet) and letting her get used to that. The down side to exclusive NG Tube feeding is that Laura (and most others who have to be tube fed) develop a food aversion. That means they either do not like the taste of food of the feel of it in their mouths. Another weird idea to me, as I believe eating is a very good thing. On top of the food aversion, we are trying to get Laura past a bad gag reflex as well. So these are our current challenges.
Some of you may have noticed there is a new web site in the list. The Oley Foundation is a nonprofit that tries to provide support for families who have a member that must be tube fed. I checked out their web site, and they have some good information out there.
So we are home. We are feeding every three hours. She is more active and more motivated. She tracks with eyes much better. When she focuses on you she actively tries to interact with you. She makes sounds, smiles (all the time now) and just seems to be enjoying life. Tara and I are very happy that she is doing so well. We thank God daily.
Finally, Welcome Nathanael Miller to the world. Congratulations to Rachel, Matt, Gabriel and Jonathan on finally getting to bring the newest addition to the family home.
As I have said in a previous post, this is new territory for Tara and I. Neither one of us wants the spot light. But all is good.
I am still amazed at how much more active she is than before the surgery. Everyday, she is awake a little longer than the day before. Everyday she fight sleep a little harder. This is going to make the coming years very interesting to say the least.
We had our first visit with Laura's E.C.I. therapist this morning. Liegh was very impressed with Laura's suck. This is big news, because as most of you know for almost a month before Laura's heart surgery she was feeding mostly through her NG tube. She just tired out so quickly when she would try to bottle feed. Tara and I kept doing Laura on her exercises as best we could once she was on the NG tube completely. We are hoping it will pay off soon.
Our plan, and Leigh agrees, is to start slow. We are continuing Laura's exercises from before her surgery. We are also putting a little of her food in just the nipple (not giving her a bottle yet) and letting her get used to that. The down side to exclusive NG Tube feeding is that Laura (and most others who have to be tube fed) develop a food aversion. That means they either do not like the taste of food of the feel of it in their mouths. Another weird idea to me, as I believe eating is a very good thing. On top of the food aversion, we are trying to get Laura past a bad gag reflex as well. So these are our current challenges.
Some of you may have noticed there is a new web site in the list. The Oley Foundation is a nonprofit that tries to provide support for families who have a member that must be tube fed. I checked out their web site, and they have some good information out there.
So we are home. We are feeding every three hours. She is more active and more motivated. She tracks with eyes much better. When she focuses on you she actively tries to interact with you. She makes sounds, smiles (all the time now) and just seems to be enjoying life. Tara and I are very happy that she is doing so well. We thank God daily.
Finally, Welcome Nathanael Miller to the world. Congratulations to Rachel, Matt, Gabriel and Jonathan on finally getting to bring the newest addition to the family home.
Thursday, September 10, 2009
The Bionic Child . . .
"Trust in the Lord with all of your heart and lean not on your own understanding
In all of your ways acknowledge Him and He shall direct your path"
Proverbs 3; 6 - 6
Ever since Laura's surgery was first described to us, I have pictured Steve Austin the Bionic man. I have repeatedly heard the narrator's commentary during the open sequence. He would generally say something like "We can rebuild him. We can make him faster, and stronger. We have the technology."
After seeing Laura yesterday with all of the tubes in her, that thought has been nothing but more prevalent. However, today they started removing those tubes. She still has many of them, but having two or three less makes it seem like she is almost back to normal. She still has many tubes in her (mostly to drain fluids that the body might excrete as a result of her surgery), but they continue to come out. The doctors think that they might transfer Laura from the C.V.I.C.U. tomorrow to the normal recovery floor.
What is really cool, is that she is already moving and squirming and wiggling like she was before the surgery. She actually started yesterday evening. The doctors are very impressed and proud of how quickly she is bouncing back. All I can say to this is, God is awesome.
Tara and I are very excited about this. You see we were worried that because of some unknown factor (bad reaction to a drug, defective bypass) that she might suffer brain damage, or some other set back, that would change her very sweet but inquisitive personality. That does not seem to be the case. Laura is responding to our voices and is trying to interact with her immediate environment. For those of you that have met Laura, you know that means that it will not be long before she figures out how to pull some of those tubes out herself. She is even making her normal noises. Her voice sounds a little horse, but that is not unexpected.
She once again has an N.G. tube for feeding. However, this will not be a permanent thing. We are anxious to be able to start bottle feeding her, so we can get rid of that thing. The C.V.I.C.U. doctors have taken her off of Morphine and put her on a different pain medication. It is not as strong as morphine, but it will be as tough on her stomach. They have also restarted her on the heart medications she was on before her surgery. They want to keep her lungs dry, and decrease her blood pressure so her heart will not have to work as hard. They have also started her on a kidney medication, to help her body naturally drain any excess fluids.
Overall, things continue to progress at a very good pace. I am hoping we will be able to bring Laura home Monday afternoon or evening.
In all of your ways acknowledge Him and He shall direct your path"
Proverbs 3; 6 - 6
Ever since Laura's surgery was first described to us, I have pictured Steve Austin the Bionic man. I have repeatedly heard the narrator's commentary during the open sequence. He would generally say something like "We can rebuild him. We can make him faster, and stronger. We have the technology."
After seeing Laura yesterday with all of the tubes in her, that thought has been nothing but more prevalent. However, today they started removing those tubes. She still has many of them, but having two or three less makes it seem like she is almost back to normal. She still has many tubes in her (mostly to drain fluids that the body might excrete as a result of her surgery), but they continue to come out. The doctors think that they might transfer Laura from the C.V.I.C.U. tomorrow to the normal recovery floor.
What is really cool, is that she is already moving and squirming and wiggling like she was before the surgery. She actually started yesterday evening. The doctors are very impressed and proud of how quickly she is bouncing back. All I can say to this is, God is awesome.
Tara and I are very excited about this. You see we were worried that because of some unknown factor (bad reaction to a drug, defective bypass) that she might suffer brain damage, or some other set back, that would change her very sweet but inquisitive personality. That does not seem to be the case. Laura is responding to our voices and is trying to interact with her immediate environment. For those of you that have met Laura, you know that means that it will not be long before she figures out how to pull some of those tubes out herself. She is even making her normal noises. Her voice sounds a little horse, but that is not unexpected.
She once again has an N.G. tube for feeding. However, this will not be a permanent thing. We are anxious to be able to start bottle feeding her, so we can get rid of that thing. The C.V.I.C.U. doctors have taken her off of Morphine and put her on a different pain medication. It is not as strong as morphine, but it will be as tough on her stomach. They have also restarted her on the heart medications she was on before her surgery. They want to keep her lungs dry, and decrease her blood pressure so her heart will not have to work as hard. They have also started her on a kidney medication, to help her body naturally drain any excess fluids.
Overall, things continue to progress at a very good pace. I am hoping we will be able to bring Laura home Monday afternoon or evening.
Wednesday, September 9, 2009
Houston we have success . . .
"Trust in the Lord with all of your heart and lean not on your own understanding
In all of your ways acknowledge Him and He shall direct your path"
Proverbs 3; 6 - 6
Anybody who has known me for very long, knows that Houston Texas is not one of my favorite places. It is far to humid here. The only elevation change is some minor stuff that fluctuates between 50 feet below sea level, to 50 feet above sea level. For those that do not know the history of this town, it is built on a swamp that was converted to rice fields, then into what would become the 4th largest city in the United States of America.
Today, Houston is my favorite place in the whole wide world and all of Gods creation. One of Houston's greatest assets is the Houston Medical Center. Many of the hospitals there are ranked among the world leaders in their various specialties. When walking through any one of the hospitals, it is not uncommon to hear as many as 20 different languages and seemingly innumerable different dialects. People come from all over the world, to be treated at the various hospitals that make up the Houston Medical Center. Doctor's all over the world clamor for the opportunity to be considered for a position at one of these hospitals.
Texas Children's Hospital is among these elite organizations. They are consistently ranked among the best Childrens Hospitals in the world. We have already seen the dedication to caring and excellence once this year, when Laura was first born. Today, we it in action yet again.
At 7:00 am the surgical nurse came to get Laura for her open heart surgery, that was described in a previous post. At 8:00 am we said good bye to her, so that she could be prepped for surgery. We met with the anesthesiologist, surgeon and her cardiologist before her preparation began. 8:00 am began what can only be described as the most agonizingly long day ever.
At about 10:30 am the charge nurse came out, and told us that Laura was doing great and gave us an update on the surgery. She would do this every two hours up to about 3:00 or 3:30 pm. After that time, it would be up to either the surgical nurse or the surgeon himself to give us updates. Each update was like a little nugget of hope, sunshine, gold and dark chocolate all rolled into one. Unfortunately, it also meant another 2 hours before the next update.
At 4:30 pm we were told that Dr. Morales (the surgeon) would want to meet with us. We met about 4:50 or so. He told us that the operation went beautifully and that Laura was doing fine. She would be heading up to the I.C.U., and after that we would be able to see her. We finally got in to see her at about 6:00 pm. I had been preparing myself for a sight that would have covered her entire body in wires and tubes. I had convinced myself that only a little face and hands to be seen. When we saw her it was not nearly as bad as I thought (I kept flashing to Obi-Wan's description of Vader being more machine than man). However, it was still a little disturbing to see all of those wires and tubes running in and out of her. But none the less, there she was. Out like a light. Beautiful.
There were many tears this evening. Some from everyone who was there, and I am sure many more from those who were not. Thank you all for your prayers, kind words of encouragement, gifts, thoughts and support. It has meant the world to Tara, myself and Laura's grandparents. We will never be able to express how much each of you have meant to us during this ordeal. Thank you.
Some of you are probably wondering what is next. This is how I understand it. Each of those wires and tubes is hooked up to something that is helping Laura function. Over the next 24 hours they will begin to scale down that support for her (as she can tolerate it) with the goal being to have Laura functioning on her own. After that, she will remain in the I.C.U. for another day or two for observation. From there, they will send her to the recovery ward (if that is what you still want to call it) where Tara and I, and Laura's grandparents will learn how to care for a 12 week old who has just had open heart surgery. Ideally, she will only be there for a few days. After that she gets to come home. For three to five more weeks she will be pretty much isolated at home (not counting doctor's appointments) until she is properly healed and her immune system is strengthened. Then, with her cardiologist permission, it is back to life as normal.
Today I love this town, and there is no place I would rather be.
Folks, I am telling you prayer works. Laura is living proof of that simple statement. Again, thank you all.
In all of your ways acknowledge Him and He shall direct your path"
Proverbs 3; 6 - 6
Anybody who has known me for very long, knows that Houston Texas is not one of my favorite places. It is far to humid here. The only elevation change is some minor stuff that fluctuates between 50 feet below sea level, to 50 feet above sea level. For those that do not know the history of this town, it is built on a swamp that was converted to rice fields, then into what would become the 4th largest city in the United States of America.
Today, Houston is my favorite place in the whole wide world and all of Gods creation. One of Houston's greatest assets is the Houston Medical Center. Many of the hospitals there are ranked among the world leaders in their various specialties. When walking through any one of the hospitals, it is not uncommon to hear as many as 20 different languages and seemingly innumerable different dialects. People come from all over the world, to be treated at the various hospitals that make up the Houston Medical Center. Doctor's all over the world clamor for the opportunity to be considered for a position at one of these hospitals.
Texas Children's Hospital is among these elite organizations. They are consistently ranked among the best Childrens Hospitals in the world. We have already seen the dedication to caring and excellence once this year, when Laura was first born. Today, we it in action yet again.
At 7:00 am the surgical nurse came to get Laura for her open heart surgery, that was described in a previous post. At 8:00 am we said good bye to her, so that she could be prepped for surgery. We met with the anesthesiologist, surgeon and her cardiologist before her preparation began. 8:00 am began what can only be described as the most agonizingly long day ever.
At about 10:30 am the charge nurse came out, and told us that Laura was doing great and gave us an update on the surgery. She would do this every two hours up to about 3:00 or 3:30 pm. After that time, it would be up to either the surgical nurse or the surgeon himself to give us updates. Each update was like a little nugget of hope, sunshine, gold and dark chocolate all rolled into one. Unfortunately, it also meant another 2 hours before the next update.
At 4:30 pm we were told that Dr. Morales (the surgeon) would want to meet with us. We met about 4:50 or so. He told us that the operation went beautifully and that Laura was doing fine. She would be heading up to the I.C.U., and after that we would be able to see her. We finally got in to see her at about 6:00 pm. I had been preparing myself for a sight that would have covered her entire body in wires and tubes. I had convinced myself that only a little face and hands to be seen. When we saw her it was not nearly as bad as I thought (I kept flashing to Obi-Wan's description of Vader being more machine than man). However, it was still a little disturbing to see all of those wires and tubes running in and out of her. But none the less, there she was. Out like a light. Beautiful.
There were many tears this evening. Some from everyone who was there, and I am sure many more from those who were not. Thank you all for your prayers, kind words of encouragement, gifts, thoughts and support. It has meant the world to Tara, myself and Laura's grandparents. We will never be able to express how much each of you have meant to us during this ordeal. Thank you.
Some of you are probably wondering what is next. This is how I understand it. Each of those wires and tubes is hooked up to something that is helping Laura function. Over the next 24 hours they will begin to scale down that support for her (as she can tolerate it) with the goal being to have Laura functioning on her own. After that, she will remain in the I.C.U. for another day or two for observation. From there, they will send her to the recovery ward (if that is what you still want to call it) where Tara and I, and Laura's grandparents will learn how to care for a 12 week old who has just had open heart surgery. Ideally, she will only be there for a few days. After that she gets to come home. For three to five more weeks she will be pretty much isolated at home (not counting doctor's appointments) until she is properly healed and her immune system is strengthened. Then, with her cardiologist permission, it is back to life as normal.
Today I love this town, and there is no place I would rather be.
Folks, I am telling you prayer works. Laura is living proof of that simple statement. Again, thank you all.
Tuesday, September 8, 2009
Ladies & Gentlemen start your waiting
"trust in the Lord with all ofyoir heart and lean not on your own understanding in all of your ways acknowledge Him and He shall direct your path"
Proverbs 3; 6 - 6
Well it is 9:30 pm on Tuesday September 8th. We have been at TCH since 7:30 am. Wehave been in our room since about 2:00 pm. Needless to say we are exhausted. Laura has come through it all like a champ. I wish I had her stamina, strength and ability to sleep at less than a moments notice.
She has had a trying day today. She went through the normal weight (over 12 pounds), length (over 22 inches) and pulse when we checked in. She also had her blood oxygen level checked. This not unusual for her. We then had to have blood drawn. This was not fun, to say the least. It took three nurses and over an hour to draw the needed blood. Laura was not a happy camper. The rest of the testing went well. X-Ray, EKG, more blood oxygen levels all went smoothly. We even got to have lunch.
At about 2:00 pm we were admitted to the hospital. We are first up for surgery tomorrow at 8:00 am. They will come and get her to prep her for the surgery at 7:00 am. This means another early day tomorrow (we were up at 5:30 am today). I am not looking forward to that time.
Please keep praying for Laura, her various medical teams and her family. We all need it.
Good night.
Proverbs 3; 6 - 6
Well it is 9:30 pm on Tuesday September 8th. We have been at TCH since 7:30 am. Wehave been in our room since about 2:00 pm. Needless to say we are exhausted. Laura has come through it all like a champ. I wish I had her stamina, strength and ability to sleep at less than a moments notice.
She has had a trying day today. She went through the normal weight (over 12 pounds), length (over 22 inches) and pulse when we checked in. She also had her blood oxygen level checked. This not unusual for her. We then had to have blood drawn. This was not fun, to say the least. It took three nurses and over an hour to draw the needed blood. Laura was not a happy camper. The rest of the testing went well. X-Ray, EKG, more blood oxygen levels all went smoothly. We even got to have lunch.
At about 2:00 pm we were admitted to the hospital. We are first up for surgery tomorrow at 8:00 am. They will come and get her to prep her for the surgery at 7:00 am. This means another early day tomorrow (we were up at 5:30 am today). I am not looking forward to that time.
Please keep praying for Laura, her various medical teams and her family. We all need it.
Good night.
Monday, September 7, 2009
Unto the breech we charge
It is all in God's hands.
It is all in God's hands.
It is all in God's hands.
As we get closer and closer to Laura's surgery date (which is Wednesday September 9th), I find myself repeating this more and more. Several days ago I was fine with everything that is going to happen. As we get closer and closer I become less sure that I can handle this.
For anyone who does not know, Laura is having open heart surgery. She has what the doctors have called a Balanced A/V Canal defect in her heart. What this means is that in her heart, the wall that seperates the two atriums did not fully form. Neither did the wall the sepreates her two ventricles. As a result of this situation, Laura only has one valve in her heart instead of two. This means that she has increased blood flow to her lungs (which causes fluid to build up on them), and decreased blood flow to her body. This is because the body is a high pressure system and the lungs are a low pressure system. Blood being a liquid, will always take the path of least resistance. Fortunately, this is repairable with surgery.
So here is the scenario. Tomorrow morning (Tuesday September 8th) we will arrive at Texas Childrens Hospital at an unreasably aerly time of between 7:30 am and 8:00 am to begin her final check and screen. The Marcus is not happy about this early start. He may have to hold his breath and stomp his feeet tomorrow. After all the tests are completed we will get to wait (and hopefully eat lunch). After the waiting is over we will meet with the doctor and go over the test results. If everything looks good Laura will be admitted to the hospital tomorrow afternoon or evening. She will no longer be allowed to feed after midnight, but she will be hooked up to an IV. Wednesday she will have her surgery. All we know about when the surgery is, is that surgeries generally start at 8:00 am. That does not help as many people ask us what time her surgery is and all we can do is shrug and tell them after 8:00 am.
The surgery will go like this. The surgoen will make an incision along her breast bone. Then he will sperate the sternum (breast bone). Next he will cut the skin like material that is under the breast bone. This will expose her heart and lungs.
At this point the surgoen will hook Laura up to a heart and lung machine. After that he will stop her herat and lungs. From there he will open Laura's heart and get his first true good look at what he has to work with. X-ray's and echo's and the like are great for getting an idea of what is going on, but they really only reveal shadows. Once the surgoen opens her up he will make his final decision on what to do next.
Our preferred soluthion is that he repair the defect. However, if he feels that there is not yet enough material in the existing valve to build two valves we will opt to place a band on the vein that flows from Laura's heart to her lungs. This will have the effect of creating a high pressure system that blood has to flow through to get to the lungs. This will also increase her blood flow to her body. He will then close up her heart, resart the her heart and lungs and take her off of the heart and lung machine. From there he will close the incision in the skin like material, close her sternum and finally close up her skin. This is a stop gap messure. If this route is taken then Laura will still have to have the surgery to fix her heart in the future.
So how is the surgery going to work (if it can be done)? If the surgoen decides that there is enouigh material to build two valves from one, then that is where he will begin. After he builds the valves he will repair the the two walls. He will do this by taking some of the skin like material under her rib cage and using it to complete the walls. He will then close up her heart, restart her heart and lungs and take her off of the heart and lung machine. Fromt there, he will close the inciesion in the skin like material, close her sturenum and finally close up her skin. If all of this is able to be done, then she will be fine. There will be regular checkups with her cardiologist, but there should be no further need for surgery.
As good as the team at Texas Children's is, there are risks. Laura could get bumped for an emergency case. That means we would have to reschedule everything and go through all of this aghain at a later date. Not a possibility that I am happy about. Laura could be bumped even after she is sedated and into the operating room (as long as no incisions have been made).
Laura could die. This is open herat surgery on a child that is less than three months old. Things are small. There are any number of things that could go wrong.
There could be a problem with the heart and lung machine, that could result in permanent brain damage. These are scary to contimplate, but they are very real riskes.
For those who have been wondering why there have not been any updates the last few weeks, that is my fault. Some how it seemed like if I wrote about it, Laura's surgery would some how become more real, and that our worst fears might be realized. Feelings similar to what we went through back in March, are statring to become more common. So please pray for Dr. Morales (the surgoen) and his team, the staff at Texas Childrens Hostpital, Laura and her family, and anyone else who is going to be involved in all of this. We could all really use it.
Thank you.
It is all in God's hands.
It is all in God's hands.
As we get closer and closer to Laura's surgery date (which is Wednesday September 9th), I find myself repeating this more and more. Several days ago I was fine with everything that is going to happen. As we get closer and closer I become less sure that I can handle this.
For anyone who does not know, Laura is having open heart surgery. She has what the doctors have called a Balanced A/V Canal defect in her heart. What this means is that in her heart, the wall that seperates the two atriums did not fully form. Neither did the wall the sepreates her two ventricles. As a result of this situation, Laura only has one valve in her heart instead of two. This means that she has increased blood flow to her lungs (which causes fluid to build up on them), and decreased blood flow to her body. This is because the body is a high pressure system and the lungs are a low pressure system. Blood being a liquid, will always take the path of least resistance. Fortunately, this is repairable with surgery.
So here is the scenario. Tomorrow morning (Tuesday September 8th) we will arrive at Texas Childrens Hospital at an unreasably aerly time of between 7:30 am and 8:00 am to begin her final check and screen. The Marcus is not happy about this early start. He may have to hold his breath and stomp his feeet tomorrow. After all the tests are completed we will get to wait (and hopefully eat lunch). After the waiting is over we will meet with the doctor and go over the test results. If everything looks good Laura will be admitted to the hospital tomorrow afternoon or evening. She will no longer be allowed to feed after midnight, but she will be hooked up to an IV. Wednesday she will have her surgery. All we know about when the surgery is, is that surgeries generally start at 8:00 am. That does not help as many people ask us what time her surgery is and all we can do is shrug and tell them after 8:00 am.
The surgery will go like this. The surgoen will make an incision along her breast bone. Then he will sperate the sternum (breast bone). Next he will cut the skin like material that is under the breast bone. This will expose her heart and lungs.
At this point the surgoen will hook Laura up to a heart and lung machine. After that he will stop her herat and lungs. From there he will open Laura's heart and get his first true good look at what he has to work with. X-ray's and echo's and the like are great for getting an idea of what is going on, but they really only reveal shadows. Once the surgoen opens her up he will make his final decision on what to do next.
Our preferred soluthion is that he repair the defect. However, if he feels that there is not yet enough material in the existing valve to build two valves we will opt to place a band on the vein that flows from Laura's heart to her lungs. This will have the effect of creating a high pressure system that blood has to flow through to get to the lungs. This will also increase her blood flow to her body. He will then close up her heart, resart the her heart and lungs and take her off of the heart and lung machine. From there he will close the incision in the skin like material, close her sternum and finally close up her skin. This is a stop gap messure. If this route is taken then Laura will still have to have the surgery to fix her heart in the future.
So how is the surgery going to work (if it can be done)? If the surgoen decides that there is enouigh material to build two valves from one, then that is where he will begin. After he builds the valves he will repair the the two walls. He will do this by taking some of the skin like material under her rib cage and using it to complete the walls. He will then close up her heart, restart her heart and lungs and take her off of the heart and lung machine. Fromt there, he will close the inciesion in the skin like material, close her sturenum and finally close up her skin. If all of this is able to be done, then she will be fine. There will be regular checkups with her cardiologist, but there should be no further need for surgery.
As good as the team at Texas Children's is, there are risks. Laura could get bumped for an emergency case. That means we would have to reschedule everything and go through all of this aghain at a later date. Not a possibility that I am happy about. Laura could be bumped even after she is sedated and into the operating room (as long as no incisions have been made).
Laura could die. This is open herat surgery on a child that is less than three months old. Things are small. There are any number of things that could go wrong.
There could be a problem with the heart and lung machine, that could result in permanent brain damage. These are scary to contimplate, but they are very real riskes.
For those who have been wondering why there have not been any updates the last few weeks, that is my fault. Some how it seemed like if I wrote about it, Laura's surgery would some how become more real, and that our worst fears might be realized. Feelings similar to what we went through back in March, are statring to become more common. So please pray for Dr. Morales (the surgoen) and his team, the staff at Texas Childrens Hostpital, Laura and her family, and anyone else who is going to be involved in all of this. We could all really use it.
Thank you.
Subscribe to:
Posts (Atom)
