Okay, I know some of you have either been told this by us or have read it on your own searching yourselves on Google, but we are told some people still don't really know what is happing with our baby girl that is due August 23rd. Because first two kids were C-Sections, this one will be as well and is usually 7-10days before the due date. We know we have to have baby up in St. Pete so baby can immediatly be brought to All Children's which is accessible through a walking tunnel that connects to the hospital Ashley will give birth. Now, I will go with our baby to the CARDIAC ICU, which I'm told is an ICU on steriods. But, Ashley will have to wait until she is cleared to get out of bed and after a C-Section is at least 12hrs, if not longer.
Now, below is something I found that best explains the KNOWNS. What is not told is what comes along with these procedures (breathing/eating issues, recovery time stays in hospital, limited to no visits except by parents)as well as the unknowns (breathing/feeding tubes at HOME as well as hospital, longer recovery times at hospital, constant sickness that leads to more stays at hospital, how much (if at all) can we hold our baby, "lockdown" during RSV season which is from Fall to Spring, total cost of all this, and many others.
We know not two cases of such rare CHD (Congenial Heart Disease) are the same, but to make matters worse, pretty much evertyhing Ashley has seen/read, is freaking her out. Babies are constantly ending back at the hospital and all seem to eventually get feeding tubes as well as oxygen tubes. We will no matter what be spending a lot of time in St. Pete and with two boys starting a new school this year for Kindergarden and K-4 along with the fact we both have to work (Ashley gets great benifits (health care) and is pretty much main reason she works and now we need it more than ever), it is going to be very difficult to juggle eveything and try not to disrupt the boys life too much. We want them to still eat very healthy, get to bed (preferably their own) ontime (8PM), and not to be worring/scared. We will also still have a house (hopfully)to clean, yard to mow, bills to pay, grocery shop, get kids to/from school, kids "homework"/activities, and everything else that must still go on in life. I'm falling a sleep, so that's it for now but please read below for at least the KNOWN's coming up on our lives! I've highlited some areas in Red to get main points visible.
Kevin
What is a single ventricle cardiac anomaly?
The term "single ventricle anomaly" is purposely non-specific. It is used to describe a group of cardiac defects that may differ quite dramatically from each other but share the common feature that only one of the two ventricles is of adequate functional size.
Because of this feature, the ultimate plan for reconstruction is actually quite similar for most of these anomalies. All will generally undergo staged reconstructive procedures ultimately resulting in a "Fontan circulation."
Some of the anomalies described as single ventricle defects include:
Tricuspid atresia
Hypoplastic left heart syndrome
Double inlet left ventricle
Many of the heterotaxy defects
Some variations of double outlet right ventricle (This is what we are told we have KPL)
Diagnosing and evaluating single ventricle anomalies
In most cases an echocardiogram will be able to define the details of the cardiac anatomy for the initial diagnosis in the newborn period. Echocardiography will also be important in following the anatomy and function of the various components of the cardiovascular system, such as valve or ventricular function, as the child grows.
Cardiac catheterization is only occasionally necessary in a newborn with a single ventricle anomaly, if there are details of the anatomy that cannot be determined by echocardiogram. However, patients with single ventricle anomalies will have a cardiac catheterization prior to the second surgery (Glenn shunt) and again before the third surgery (Fontan procedure). These cardiac catheterizations are done to look at the anatomy, particularly of the pulmonary arteries, and to obtain pressure measurements in the heart. These pressure measurements are important in determining if a patient with a single ventricle anomaly is a good candidate for surgery.
Catheter interventions such as dilation or stenting of pulmonary arteries or coil occlusion of abnormal collateral (extra) vessels may be performed at the time of these cardiac catheterizations.
Fontan Circulation
In the normal heart each ventricle does a separate job. The right ventricle pumps blood to the lungs, the left ventricle pumps blood to the body.
In a single ventricle heart, there is only one ventricle large enough to do the normal job of pumping blood. Thus, we need to configure the circulation to maximize the efficiency of this single ventricle.
This ultimately requires committing the single ventricle to doing the harder work of the heart, pumping blood to the body. The job of getting blood to the lungs must be done without a pump.
Whenever there is only one ventricle large enough to do a normal job of pumping blood, we need to configure the circulation to maximize the efficiency of this single ventricle without overworking it.
The "Fontan circulation" refers to this configuration where the single ventricle pumps blood returning from the lungs to the body, and the blood returning from the body travels to the lungs via direct blood vessel connections without a pumping chamber. In any individual child there may be different procedures needed to achieve this goal.
Requirements for a child to be a good risk candidate for a Fontan circulation
For a heart with a Fontan reconstruction to work well, there are a few crucial features that must be maintained. These key factors must be kept in mind when planning the medical or surgical management of children with single ventricle defects from the first day of life onward.
The single ventricle must not be overworked for a long period of time, in terms of either having to pump too much blood or pump at too high a pressure.
The pulmonary arteries must grow well without stenosis (narrowing) and must remain low resistance (or be very relaxed). If the pulmonary arteries are narrow or if the resistance in these vessels is high, blood will not be able to flow into them without a pump, so the Fontan will not be successful. (We are told they see beginning stages of Stenosis and expect near to full stenosis at birth, so we are told to expect surgery the first week of birth, see below. KPL)
Lastly, leaky or tight valves may adversely affect the function of the ventricle or the flow of blood to the lungs.
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Operative stages for achieving a Fontan circulation
The type of operation needed in the newborn period is quite varied depending on the specific type of single ventricle cardiac defect. In some babies there is not enough blood flow into the lungs, resulting in cyanosis. In these babies, a tube graft is placed from an artery (usually the left subclavian or left innominate artery) to the pulmonary artery. This is called a systemic to pulmonary artery shunt or Blalock-Taussig (BT) shunt. (This is the first surgery we are told to expect the first week of life because of the Stenosis, KPL)
In other babies, the flow of blood into the lungs may be excessive, placing an extra burden on the ventricle and exposing the pulmonary arteries to dangerously high pressure. In these babies, a procedure will be performed to restrict blood flow to the lungs. This is done by placing a piece of material or a "band" around the pulmonary artery.
Other newborns have more complex heart disease and require more complex operations, such as the Norwood procedure for patients with hypoplastic left heart syndrome.
Rarely, a baby with a single ventricle anomaly will have "just right" flow into the lungs so that an equal amount of blood flows to the body and the lungs. These babies do not require intervention in the newborn period.
Whatever is needed in the newborn period, the aim is typically to balance the blood flow between the lungs and the body, achieving stable oxygen levels and adequate heart function.
The second stage for most children with single ventricle anomolies is undertaken around three to six months of age. The operation is called a "bi-directional Glenn" or sometimes a "hemi-Fontan."
During the Glenn operation the large vessel that drains blood from the head and upper body back to the heart (the superior vena cava) is taken off the heart and sewn directly to the pulmonary artery. If a prior BT shunt was present, it is removed. If a pulmonary artery was previously placed, it may be removed but can also be left in place in some situations. (This is our second surgery we are to expect, KPL)
The Glenn operation has two major advantages in most children. First, because the connection is a direct one between two blood vessels, rather than made of artificial matter, it has the ability to grow with the child.
Second, it removes some of the work of pumping blood to the lungs from the single ventricle so that the ventricle will no longer have to pump all of the blood to the lungs in addition to all of the blood to the body, which places it at risk for early heart failure. In most cases this stage is tolerated the best of all the stages with a survival rate of 95 percent or better.
After the Glenn operation most children will have oxygen saturation levels of 75 percent to 85 percent.
The third and final stage in the reconstruction of a single ventricle heart defect is the Fontan completion operation. This operation is usually performed at 2 or 3 years of age, based on the child's size and clinical status. (The third and final KNOWN surgery, KPL)
During the Fontan operation, blood returning to the heart from the lower half of the body (via the inferior vena cava) is connected directly the blood from the pulmonary arteries. Up until now this blood has bypassed the lungs resulting in oxygen levels lower than normal.
After a Fontan operation, oxygen levels will be nearly normal (90s). The two most common methods of performing the Fontan completion today are the "lateral tunnel" and the "extra-cardiac" techniques.
In the lateral tunnel method, a tunnel-like patch is placed inside the atrium so that blood returning from the inferior vena cava is directed through this tunnel. A connection is then made between the end of the tunnel / top of the right atrium and the underside of the pulmonary artery.
In the extra-cardiac method, the inferior vena cava is taken off of the heart and a synthetic tube, usually Gore-texTM, is sewn directly to the top of the inferior vena cava and to the underside of the pulmonary artery, routing the blood flow outside of the heart.
In either method, a hole or "fenestration" is often made between the Fontan circuit and the right atrium so that if pressures become very high in the Fontan circuit, there is a "pop-off" into the heart. Patients with fenestrations may have a more stable post-operative course with smaller and less prolonged plerual effusions (a common complication after Fontan surgery). Many fenestrations close spontaneously many months after surgery, but can also be closed during a cardiac catheterization procedure if deemed necessary.
Currently, when patients have been well prepared for Fontan completion, the success rates are 90 percent and higher.
Will a child who has had a Fontan operation be able to function as well as a child with a normal, two-ventricle heart?
After a successful Fontan surgery, the reconstructed single ventricle heart has achieved its maximal efficiency in terms of ventricular work and near normal oxygen levels, but its capacity for work will usually not match that of a normal heart when examined using sophisticated testing.
The limitations children experience due to their heart defect, though, can vary greatly. At one end of the spectrum there are children with Fontan circulations who have participated in competitive sports such as swimming and gymnastics. Most children are on a blood thinner called coumadin after their Fontan to prevent clots from forming in the Fontan circuit. When a child is on a blood thinner, you must take extra careful to avoid falls or head trauma as they are at increased risk for internal bleeding.
Other children may have significant limitation in their capacity for exercise. Most children fall somewhere in between the extremes.
How long a heart with a single ventricle reconstruction can function is not known. It is now just over 30 years since the first successful Fontan operation was performed and many improvements in surgical technique and medical management have occurred over this time period.
Late complications including irregular rhythms and heart failure may be occur. Some speculate that most single ventricle hearts will not function efficiently beyond 30 to 40 years, but improvements in surgical technique and medical care may increase this age significantly. In some cases, if the ventricular function deteriorates significantly, heart transplantation may be considered.
Because of the possibility of late complications, continued regular follow-up with a cardiologist for the life of a patient with a single ventricle anomaly is essential.
Thursday, May 14, 2009
Wednesday, May 6, 2009
In Case Anyone Is Curious
I did take Todd to the dentist Monday. A few weeks after whatever accident he had to damage the tooth...don't worry I was reprimanded by the dentist. In my defense, Todd did not complain about the tooth hurting until this past weekend and there was no outer trauma to his mouth to give me a head's up.
His tooth is actually fine...besides being a nasty gray color. He was very good for the dentist. My kids are freaks. They LOVE going to the dentist. Anyway. He got an x-ray of his tooth and the nerve is still alive and there is no fracture to the tooth. The dentist did say we (and Todd) need to be careful with the tooth so as not to do anymore damage to it. The dentist said given time the tooth will heal and could even go back to being white. The things you learn. I would much prefer his tooth to go back to white because those suckers do not get loose and fall out until around 7 years of age. 3 more years of all his pictures with a gray front tooth? I hope not.
Of course being the boy he is I'm sure he will do something to retraumatize that poor tooth and it will come out sooner rather than later.
His tooth is actually fine...besides being a nasty gray color. He was very good for the dentist. My kids are freaks. They LOVE going to the dentist. Anyway. He got an x-ray of his tooth and the nerve is still alive and there is no fracture to the tooth. The dentist did say we (and Todd) need to be careful with the tooth so as not to do anymore damage to it. The dentist said given time the tooth will heal and could even go back to being white. The things you learn. I would much prefer his tooth to go back to white because those suckers do not get loose and fall out until around 7 years of age. 3 more years of all his pictures with a gray front tooth? I hope not.
Of course being the boy he is I'm sure he will do something to retraumatize that poor tooth and it will come out sooner rather than later.
Tuesday, May 5, 2009
I Like My Normal
I recently read a post from another blogger that perfectly describes how I am feeling right now. I wish I could express with my words the same eloquence but I lack the story telling skills so vital to this type of writing. In all honesty I had already discussed this with my counselor and to an extent in a previous blog post. I now know the phrase that sums up my experience...I am not normal.
I am not normal because I am not having a normal pregnancy ending with a normal baby.
The reason I am so hesitant to be around people and talk about the baby is because everyone assumes that all is well and good. And really, there is no reason why anyone would assume anything different. I look like any other normal pregnant person. However, when faced with questions/comments such as "are you getting excited for the baby...it is a girl right?"...the answer lays stuck somewhere between my logical brain and my constricted throat. I end up stuttering or mumbling same lame answer. The end result is always the same, I am unfriendly. And I get to do this every day.
But, do I lie? I feel such the hypocrite.
Or do I tell the truth to a stranger, casual acquaintance or a friend who does not already know what is going on?
Do I shock the hell out of them and say...no, I am not at all excited about the delivery of this baby and here is why. Right now I can protect the baby to an extent. Once delivered there is not one damn thing I can do. Nothing. Pure powerlessness. I can only sit back and watch while my tiny infant is poked, prodded, stuck, tested, hooked up to machines bigger than her tiny form, has her chest cut open, her heart operated on, go through more at one week old than most people will ever experience in a lifetime. She will not understand what is happening and I can do nothing but watch. I will not be able to hold her or nurse her, the two basic ways to reassure her in the way babies understand with touch and smell. She will only know sterility, discomfort, pain. For at least 5 weeks. And this is just stage one.
I believe in prayer and faith. I believe in God. However, right now, it all seems inadequate somehow. Too little for me to do when faced with such huge tasks.
And it sucks. And it is not fair. And I am resentful. And I am selfish. And to be truthful...I don't want to be positive right now. I hate this and I hate the way I feel.
I do not want to be a "heart" mom. I do not want to have a chronically ill child. I do not want to rack up ridiculous medical bills. I do not want to have to come home with an oxygen tank, feeding tubes and heart monitors. I do not want to be scared all the time. I do not want to miss Kyle's birthday. I do not want to miss Halloween and quite possibly Thanksgiving. I do not want to miss the Gator games. I do not want to be away from my boys when they need me. I do not want to miss out on Friday kids nights. I do not want to miss the boys laughter and silly antics. I do not want to sleep in a bed without my husband. I do not want to have my husband two hours aways when I need him to take care of the details or hug me. I do not want to adapt to a new normal.
I like my normal just the way it is now.
I am not normal because I am not having a normal pregnancy ending with a normal baby.
The reason I am so hesitant to be around people and talk about the baby is because everyone assumes that all is well and good. And really, there is no reason why anyone would assume anything different. I look like any other normal pregnant person. However, when faced with questions/comments such as "are you getting excited for the baby...it is a girl right?"...the answer lays stuck somewhere between my logical brain and my constricted throat. I end up stuttering or mumbling same lame answer. The end result is always the same, I am unfriendly. And I get to do this every day.
But, do I lie? I feel such the hypocrite.
Or do I tell the truth to a stranger, casual acquaintance or a friend who does not already know what is going on?
Do I shock the hell out of them and say...no, I am not at all excited about the delivery of this baby and here is why. Right now I can protect the baby to an extent. Once delivered there is not one damn thing I can do. Nothing. Pure powerlessness. I can only sit back and watch while my tiny infant is poked, prodded, stuck, tested, hooked up to machines bigger than her tiny form, has her chest cut open, her heart operated on, go through more at one week old than most people will ever experience in a lifetime. She will not understand what is happening and I can do nothing but watch. I will not be able to hold her or nurse her, the two basic ways to reassure her in the way babies understand with touch and smell. She will only know sterility, discomfort, pain. For at least 5 weeks. And this is just stage one.
I believe in prayer and faith. I believe in God. However, right now, it all seems inadequate somehow. Too little for me to do when faced with such huge tasks.
And it sucks. And it is not fair. And I am resentful. And I am selfish. And to be truthful...I don't want to be positive right now. I hate this and I hate the way I feel.
I do not want to be a "heart" mom. I do not want to have a chronically ill child. I do not want to rack up ridiculous medical bills. I do not want to have to come home with an oxygen tank, feeding tubes and heart monitors. I do not want to be scared all the time. I do not want to miss Kyle's birthday. I do not want to miss Halloween and quite possibly Thanksgiving. I do not want to miss the Gator games. I do not want to be away from my boys when they need me. I do not want to miss out on Friday kids nights. I do not want to miss the boys laughter and silly antics. I do not want to sleep in a bed without my husband. I do not want to have my husband two hours aways when I need him to take care of the details or hug me. I do not want to adapt to a new normal.
I like my normal just the way it is now.
Friday, May 1, 2009
A Conversation With Todd
Warning...you may need an interpreter for this one.
This morning as I was finishing getting ready for work, Todd comes into my room carrying two pairs of shoes. One pair is his regular tennis shoes he wears to school everyday. The second pair are the new dress shoes that Pappi bought him. However, the new "dress"shoes look a whole lot like fancy tennis shoes (these particular shoes are the only ones he would agree to get after tying on like 5 other pairs of dress shoes...these got the seal of approval because well, one, they are comfy and two, they make him run fast). I generally do not let him wear these to school as the playgrounds he plays on are filthy and have a tendency to make nice, new dress shoes look crappy. My husband, to avoid the 20th fight of the morning with Todd will occasionally give in and let Todd wear the shoes to school. I guess this morning Kevin was not going to cave, you know, since he did yesterday.
In my house, when Todd and Daddy are arguing (every dang morning!) Todd's solution is to come to me and get me to settle the problem. No different this morning...hence the two pairs of shoes he was holding when he came into my room.
Todd: "look at me, I need to change into brown pants." (The child is already fully dressed minus the shoes...and we are all running late)
Me: "why...I like what you are wearing, you look so handsome."
Todd: "no I don't...this outfit looks nervous."
Me: "ummm, sorry, nervous?"
Todd: "yes mama, nervous. And these shoes (his blue and white tennis shoes) do not match!"
Me: not yet speaking to Todd, um, you are wearing blue shorts and a white polo with blue trim..."honey, how do they not match?"
Todd: "I need brown pants and shirt."
Me: Totally not getting where this is going..."sweetie, your tennis shoes match fine, please put them on."
Todd leaves me and goes straight to Kevin...holding up his brown dress shoes (I am presuming as he does like to gesture with objects...wonder where that comes from...). In a somewhat triumphant voice..."mama said I could wear my dress shoes."
Huh? I think my jaw actually dropped a little. How in the world did he get that from our conversation. I did correct that statement with a "no I did not say that."
Five minutes later....wailing from the other room...Todd: "I want mama to tie my shoes..."
Apparently I am the only person in the whole wide world who can correctly tie Todd's tennis shoes. And of course he tells whoever else is tying them that they did not do it right.
On another note...Todd rolled out of his bed a few weeks ago and banged his mouth on his stool. Did not have the first clue as he never cried or complained about falling out of the bed or his mouth hurting. Right before Easter I caught a glimpse of his mouth when he was talking. Guess what? He did not hit the outside part of his mouth...oh no, he hit his top two teeth. One worse than the other as his top left tooth is completely gray. I am getting seriously creeped out as I wonder if this child who looks so much like me is going to repeat every stupid thing I ever did. As a young child (I'm sure some will remember) I took it upon myself to soap the bathtub so I could ice skate. Being oh so wise at my tender young age I did not calculate that the tub would be so slippery I could not possible even stand with out falling. Cracked my chin and mouth of the side of the tub. Damaged my top left tooth. Turned the sucker gray. Since I then went on to hit the tooth again, have a root canal and then have my top two teeth surgically removed...I am seriously hoping Todd does not continue to follow my path.
Between Todd's grey tooth and his funky twang...I am positive I am living with a redneck.
This morning as I was finishing getting ready for work, Todd comes into my room carrying two pairs of shoes. One pair is his regular tennis shoes he wears to school everyday. The second pair are the new dress shoes that Pappi bought him. However, the new "dress"shoes look a whole lot like fancy tennis shoes (these particular shoes are the only ones he would agree to get after tying on like 5 other pairs of dress shoes...these got the seal of approval because well, one, they are comfy and two, they make him run fast). I generally do not let him wear these to school as the playgrounds he plays on are filthy and have a tendency to make nice, new dress shoes look crappy. My husband, to avoid the 20th fight of the morning with Todd will occasionally give in and let Todd wear the shoes to school. I guess this morning Kevin was not going to cave, you know, since he did yesterday.
In my house, when Todd and Daddy are arguing (every dang morning!) Todd's solution is to come to me and get me to settle the problem. No different this morning...hence the two pairs of shoes he was holding when he came into my room.
Todd: "look at me, I need to change into brown pants." (The child is already fully dressed minus the shoes...and we are all running late)
Me: "why...I like what you are wearing, you look so handsome."
Todd: "no I don't...this outfit looks nervous."
Me: "ummm, sorry, nervous?"
Todd: "yes mama, nervous. And these shoes (his blue and white tennis shoes) do not match!"
Me: not yet speaking to Todd, um, you are wearing blue shorts and a white polo with blue trim..."honey, how do they not match?"
Todd: "I need brown pants and shirt."
Me: Totally not getting where this is going..."sweetie, your tennis shoes match fine, please put them on."
Todd leaves me and goes straight to Kevin...holding up his brown dress shoes (I am presuming as he does like to gesture with objects...wonder where that comes from...). In a somewhat triumphant voice..."mama said I could wear my dress shoes."
Huh? I think my jaw actually dropped a little. How in the world did he get that from our conversation. I did correct that statement with a "no I did not say that."
Five minutes later....wailing from the other room...Todd: "I want mama to tie my shoes..."
Apparently I am the only person in the whole wide world who can correctly tie Todd's tennis shoes. And of course he tells whoever else is tying them that they did not do it right.
On another note...Todd rolled out of his bed a few weeks ago and banged his mouth on his stool. Did not have the first clue as he never cried or complained about falling out of the bed or his mouth hurting. Right before Easter I caught a glimpse of his mouth when he was talking. Guess what? He did not hit the outside part of his mouth...oh no, he hit his top two teeth. One worse than the other as his top left tooth is completely gray. I am getting seriously creeped out as I wonder if this child who looks so much like me is going to repeat every stupid thing I ever did. As a young child (I'm sure some will remember) I took it upon myself to soap the bathtub so I could ice skate. Being oh so wise at my tender young age I did not calculate that the tub would be so slippery I could not possible even stand with out falling. Cracked my chin and mouth of the side of the tub. Damaged my top left tooth. Turned the sucker gray. Since I then went on to hit the tooth again, have a root canal and then have my top two teeth surgically removed...I am seriously hoping Todd does not continue to follow my path.
Between Todd's grey tooth and his funky twang...I am positive I am living with a redneck.
Wednesday, April 29, 2009
In a Way, No News is Good News
I was in St. Pete at ACH on Monday for my second fetal echocardiogram on the baby. 2 and 1/2 hours later we finally got to leave the office. And just so noone is confused, that would be a 2 hour ultrasound by not one, not two but three different people...one ultrasound tech (is that the right term since these people are so specialized and experts?) and two doctors. Kevin was amazed I did not fall asleep. One good thing about being a "special case" and having to see the top notch specialists is that the bed thingy you lay on for the ultrasound is an actual somewhat comfy, cushy bed.
The main doctor managing our case, Dr. H, told us that everything looks the same as 5 weeks ago. So all though my hopeful (but truly unreal) thought of things changing for the better was not the case we are not looking at any further issues or problems. Dr. H is still very confident that we are looking at Double Outlet Right Ventricle with Mitral Atresia and Pulmonary Stenosis (with completely functional and intact aorta and aortic arch). Quite the mouthful to say and understand. Here's a brief overview:
1. Double Outlet Right Ventricle - early in development the baby's heart experienced a surge (not exactly correct or technical medical term however, it is the way I understand it) causing the left side of the heart to overdevelop and then subsequently "die." The right ventricle then expanded and filled the space and function of both ventricles. Since the baby is still in utero and not breathing air, all the ducts are still open in the heart. This allows for the baby to not only receive blood through the heart but also from outside the heart. The placenta function helps move the blood to and through the lungs. Fortunately, the aorta and pulmonary vein both attached to the right side of the heart, hence the double outlet.
2. Mitral Atresia - since there is no left ventricle, there is no mitral valve.
3. Pulmonary Stenosis - the pulmonary vein responsible for carrying blood to the lungs is narrowed. Dr. H believes as the baby gets bigger in utero and then is born this vein will eventually narrow (or close completely) to the point of not allowing the blood to flow to the lungs. Because of the pulmonary stenosis the baby will have to undergo all three surgeries. I am still hoping the pulmonary vein will remain open and not narrow any further so we can avoid the first surgery. Each surgery is a risk and the first one, the "helper" surgery to place the shunt, is still opening the chest on a 1 week old infant, with anesthesia. I am not exactly looking forward to that.
All in all Dr. H thinks the baby will continue to grow just fine otherwise and be full term. In this case, a full term baby is very important. The bigger, stronger and healthier the baby, the better chance we have. He also saw no signs of heart failure which is also good news. We go back in 5 weeks for the next visit. We will get to meet the surgeon who will be performing all 3 surgeries and also see the hospitals...Bayfront for where I will be delivering and ACH for where the baby will stay. With another 2 hour ultrasound...sounds like fun, doesn't it?
One good thing that I am able to do is participate in a study that Dr. H is doing in conjunction with USF regarding babies with congenital heart defects. Lots of studies are being done now to determine if babies who are compromised in utero have brain injuries significant enough to cause developmental delays. Researchers and doctors are making a big push (at least it seems to me) to try and minimize as much as possible any damage to the brain due to lack of oxygenated blood (both in utero and during surgeries). The only negative I can see at this point by doing this study is that the ultrasound/echo will take 2 hours. Since most heart defects are not genetic the hope is that by understanding how babies develop with this the doctors can get some clues on how to try an prevent heart defects from happening...could be something as simple as a more advanced prenatal vitamin. Medical research is completely fascinating and I am truly grateful so much has already been done to this point.
Other than that all is well. The boys are still chugging right along. Kyle is getting ready to be done with school for the year, as of June 3. We got him signed up for some weekly camps at the Imaginarium (a very cool hands on science museum for kids). Todd is still the same. Both had interviews this week at St. Francis Catholic school where they will be starting in August. Been a very busy week for mama.
The main doctor managing our case, Dr. H, told us that everything looks the same as 5 weeks ago. So all though my hopeful (but truly unreal) thought of things changing for the better was not the case we are not looking at any further issues or problems. Dr. H is still very confident that we are looking at Double Outlet Right Ventricle with Mitral Atresia and Pulmonary Stenosis (with completely functional and intact aorta and aortic arch). Quite the mouthful to say and understand. Here's a brief overview:
1. Double Outlet Right Ventricle - early in development the baby's heart experienced a surge (not exactly correct or technical medical term however, it is the way I understand it) causing the left side of the heart to overdevelop and then subsequently "die." The right ventricle then expanded and filled the space and function of both ventricles. Since the baby is still in utero and not breathing air, all the ducts are still open in the heart. This allows for the baby to not only receive blood through the heart but also from outside the heart. The placenta function helps move the blood to and through the lungs. Fortunately, the aorta and pulmonary vein both attached to the right side of the heart, hence the double outlet.
2. Mitral Atresia - since there is no left ventricle, there is no mitral valve.
3. Pulmonary Stenosis - the pulmonary vein responsible for carrying blood to the lungs is narrowed. Dr. H believes as the baby gets bigger in utero and then is born this vein will eventually narrow (or close completely) to the point of not allowing the blood to flow to the lungs. Because of the pulmonary stenosis the baby will have to undergo all three surgeries. I am still hoping the pulmonary vein will remain open and not narrow any further so we can avoid the first surgery. Each surgery is a risk and the first one, the "helper" surgery to place the shunt, is still opening the chest on a 1 week old infant, with anesthesia. I am not exactly looking forward to that.
All in all Dr. H thinks the baby will continue to grow just fine otherwise and be full term. In this case, a full term baby is very important. The bigger, stronger and healthier the baby, the better chance we have. He also saw no signs of heart failure which is also good news. We go back in 5 weeks for the next visit. We will get to meet the surgeon who will be performing all 3 surgeries and also see the hospitals...Bayfront for where I will be delivering and ACH for where the baby will stay. With another 2 hour ultrasound...sounds like fun, doesn't it?
One good thing that I am able to do is participate in a study that Dr. H is doing in conjunction with USF regarding babies with congenital heart defects. Lots of studies are being done now to determine if babies who are compromised in utero have brain injuries significant enough to cause developmental delays. Researchers and doctors are making a big push (at least it seems to me) to try and minimize as much as possible any damage to the brain due to lack of oxygenated blood (both in utero and during surgeries). The only negative I can see at this point by doing this study is that the ultrasound/echo will take 2 hours. Since most heart defects are not genetic the hope is that by understanding how babies develop with this the doctors can get some clues on how to try an prevent heart defects from happening...could be something as simple as a more advanced prenatal vitamin. Medical research is completely fascinating and I am truly grateful so much has already been done to this point.
Other than that all is well. The boys are still chugging right along. Kyle is getting ready to be done with school for the year, as of June 3. We got him signed up for some weekly camps at the Imaginarium (a very cool hands on science museum for kids). Todd is still the same. Both had interviews this week at St. Francis Catholic school where they will be starting in August. Been a very busy week for mama.
Wednesday, April 22, 2009
What's New With the Boys
So, since my last fews posts have not had any pictures I thought I would put a few up and also tell what the boys are into these days.
Todd is almost 4 (oh my!). He is still my super sweet little boy (even though he no longer even resembles a little boy). He wants hugs, kisses and snuggles all the time and always wants to sleep in my bed. He LOVES sports, always asks to be outside because he wants to play baseball, soccer, basketball (his new favorite). He still lets me call him Toddles, is learing how to snap and whistle, is learing how to read, can write his first name all by himself, does awesome on his skut balance bike (almost ready for his own big boy bike), has also learned how to roller blade, still takes an afternoon nap everyday, still sucks his thumb (only when he goes to sleep), still loves and sleeps with a blanket (he calls them all blankee...have no idea why), loves books (insists on taking a new one to school everyday), will watch movies but only the ones he really likes, will watch tv but is the only male in my house who does not become comatose when in front of it, still idolizes his big brother, is major stubborn and has quite a temper and the only friends he talks about from school are his girl (pronounced gri-eel) friends. He is super funny and makes us laugh all the time.
We had a great Easter. Paige, Zane and PG were able to join us for Easter dinner. Mama got a ham, made potato salad. Paige did veggies, peanut butter pie and fruit for the angel food cake I made. I also helped with the potato salad. Kiddos all had a great time. The boys got to do an egg hunt at the house after church and then later watched Z do his egg hunt after we ate.
Kyle being 5 and 1/2 now...goodness, sounds soooo old...is such a big boy now. He rides his bike everywhere, has learned to roller blade, can snap and whistle, tells me my belly is not fat it is just the baby, wants to kiss and hug my belly because he loves the baby, is so dang smart it is scary (to me at least), can write his full name and simple sentences, is reading (all by himself...), loves books and movies and video games (when we let him play them), argues with us ALL the time, never takes no for an answer, loves Nascar and wants to race go carts, still loves his little brother and still is wide open all day (he has two speeds super fast and asleep).
Todd is almost 4 (oh my!). He is still my super sweet little boy (even though he no longer even resembles a little boy). He wants hugs, kisses and snuggles all the time and always wants to sleep in my bed. He LOVES sports, always asks to be outside because he wants to play baseball, soccer, basketball (his new favorite). He still lets me call him Toddles, is learing how to snap and whistle, is learing how to read, can write his first name all by himself, does awesome on his skut balance bike (almost ready for his own big boy bike), has also learned how to roller blade, still takes an afternoon nap everyday, still sucks his thumb (only when he goes to sleep), still loves and sleeps with a blanket (he calls them all blankee...have no idea why), loves books (insists on taking a new one to school everyday), will watch movies but only the ones he really likes, will watch tv but is the only male in my house who does not become comatose when in front of it, still idolizes his big brother, is major stubborn and has quite a temper and the only friends he talks about from school are his girl (pronounced gri-eel) friends. He is super funny and makes us laugh all the time.We had a great Easter. Paige, Zane and PG were able to join us for Easter dinner. Mama got a ham, made potato salad. Paige did veggies, peanut butter pie and fruit for the angel food cake I made. I also helped with the potato salad. Kiddos all had a great time. The boys got to do an egg hunt at the house after church and then later watched Z do his egg hunt after we ate.
Last weekend we went to a local butterfly garden. Was not too sure how the boys would do but they loved it. Bought the family membership so I am sure we will be going back a lot. The boys saw lots of buterflies, got to see one that just hatched and got to see/hold a caterpillar. The ice cream afterwards did not hurt either.
Kevin and I are still moving forward. The baby is still doing fine. We will be going to St. Pete this coming Monday for our next appointment. I will do my best to update after that appointment. We are hoping that everything is still the same, we do not want the doctor to see something worse.
Tuesday, April 14, 2009
More thoughts on baby
Twice today I was asked, "so, what are you having?" I do not know how other women feel but I feel this question to be somewhat personal in nature. Ranks right up there for me with total strangers touching my belly...puts me on edge. Especially when that is then followed by, "oh, you do not know, are you going to find out" and so far my personal favorite, "are you hoping for a girl, with 2 boys and all." Maybe knowing that this baby has a major heart problem and all is tainting my outlook. Maybe it is because I am a private person...to the point most people think me aloof or cold. Maybe it is because the last thing I want to focus on right now are the problems in this pregnancy. I don't know but I feel that if I wanted you to know details about my pregnancy, I would tell you. I feel out of sorts and uncomfortable answering these questions as the two people who asked are people I know but they are not friends and/or family. Obviously we are telling people the sex of the baby but I still have a hard time answering the question when asked.
I am now in my 21st week. My belly has really expanded and the baby is really moving around a lot. I am feeling tons of kicking. I think somehow I am still in denial (it is easy to do when the baby is not here yet).
Every day I cry.
I cry because I am constantly scared of what the future will bring. I dread knowing I have to go through countless more ultrasounds and echocardiograms. I wonder each time if the doctors will find something even worse. I dread having to go through what I do know and dread that which I do not know. I already know I will have to deliver the baby in St. Pete, at an unfamiliar hospital, with a doctor I do not know (not my own ob), with a c-section which will prevent me from going to even see my baby for hours possibly even a full day due to the baby being immediately moved to the pediatric cardic icu at All Children's. I have no idea if I will be able to nurse the baby due to eating issues. I know that the baby will spend at least 4 to 5 weeks in cardic icu without knowing if the baby will survive the first surgery or if we will be in the hospital even longer than that. I am scared that I will not feel bonded to the baby as I am constantly scared of losing the baby. I know I will be in St. Pete for weeks/months with the new baby without Kyle and Todd. I know I will miss the first day of school for Kyle and Todd. At a new school for both of them. I panic that I am sacrificing the good of the whole for the good of one. I am terrified that somehow my insurance will not cover all the medical costs and even it if does we will rack up tons of debt in medical bills. When we can least afford to do so.
With so much going on I find it very hard to talk about the fun stuff, like the sex of the baby. I cannot ask why, all that would accomplish is anguish for me. I cannot focus on people who do everything wrong during pregnancy and still manage to have a completly healthy baby. There are no answers. There is only faith. And hope.
I am now in my 21st week. My belly has really expanded and the baby is really moving around a lot. I am feeling tons of kicking. I think somehow I am still in denial (it is easy to do when the baby is not here yet).
Every day I cry.
I cry because I am constantly scared of what the future will bring. I dread knowing I have to go through countless more ultrasounds and echocardiograms. I wonder each time if the doctors will find something even worse. I dread having to go through what I do know and dread that which I do not know. I already know I will have to deliver the baby in St. Pete, at an unfamiliar hospital, with a doctor I do not know (not my own ob), with a c-section which will prevent me from going to even see my baby for hours possibly even a full day due to the baby being immediately moved to the pediatric cardic icu at All Children's. I have no idea if I will be able to nurse the baby due to eating issues. I know that the baby will spend at least 4 to 5 weeks in cardic icu without knowing if the baby will survive the first surgery or if we will be in the hospital even longer than that. I am scared that I will not feel bonded to the baby as I am constantly scared of losing the baby. I know I will be in St. Pete for weeks/months with the new baby without Kyle and Todd. I know I will miss the first day of school for Kyle and Todd. At a new school for both of them. I panic that I am sacrificing the good of the whole for the good of one. I am terrified that somehow my insurance will not cover all the medical costs and even it if does we will rack up tons of debt in medical bills. When we can least afford to do so.
With so much going on I find it very hard to talk about the fun stuff, like the sex of the baby. I cannot ask why, all that would accomplish is anguish for me. I cannot focus on people who do everything wrong during pregnancy and still manage to have a completly healthy baby. There are no answers. There is only faith. And hope.
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