Sunday, December 9, 2007

What are you doing for New Years?

Hi everyone! I'm sorry I haven't really written all that much lately. Not too much has been happening. We have some news though and a bit of information.
Tyler and I went to Toronto on Friday. (Dec 7th) We got a lot accomplished thats for sure.... with going back and forth between the two hospitals. We started first thing in the morning meeting with the paediatrician Dr Jeffreys. She told us a little bit more about what was going to be happening during the actual delivery. Most HLHS babies are born relatively healthy and they are planning on me having a vaginal delivery. They think that during the labor I can have visitors, but during the actual delivery it is one person. Once the baby is born, we get a very quick cuddle then he will be taken to the next room to get his IVs started. They start him on prostaglandin which will keep the ductus arteriosus open. After he is stable we will be able to bring visitors in and we can all meet him and take pictures...all the normal baby things. After this he will be taken through the tunnel over to the cardiac critical care unit at Sick Kids. Tyler at this point can chose to go with the baby or stay with me. Its up to him and he'll decide when the time comes. I'm sure I'll be fine with my mom and sister there to support me. Once he is at Sick Kids, he'll have another echo where they will look at his heart to get a full understanding of his defect and if there are any more complications or maybe even any less. (wishful thinking)

After meeting with the paed, we went over to Sick Kids for me to have another fetal echo. (they look at the baby's heart) There are no changes in his defect from when it was first diagnosed. Dr Jeaggi met with us and I got to ask a lot more questions I had about the Hybrid procedure. I swear they were coming left and right, but I think I really got all my questions answered. Dr Jeaggi also explained the differences between two HLHS patients of his that were born in Sept. He mentioned that one went hybrid and the other went norwood. Both are doing well, but he seems to think that the hybrid baby is dealing with less feeding issues right now. Now he is clear to mention that all babies are different, and who knows what will happen in the future with both babies. He made it clear he didn't want to sway our decision, but I secretly think he was glad to hear that i was really considering the hybrid now. In fact, after what we learned that day and Tyler and I being able to have an actual discussion about how we would like things to go, we have made the decision to go the hybrid route. It isn't written in stone, but I think we are pretty firm on it. I've added a link to a page that explains the Hybrid procedure if you are curious.
After having the echo we went back over to Mount Sinai where we were getting the basics of delivery taken care of so that everyone will be co-ordinated when the day comes. We had a quick scan of the baby. He is doing great and came in at weighting approx. 6lbs 12oz. Thats a good size for his gestation. Then Dr Ryan my OB at Mnt Sinai came in to finalize my care with Dr Kirby here in London. And they scheduled me for an induction on NEW YEARS DAY! Yup! Ty and I are to arrive in T.O. to begin induction at 12 noon on New Years Day. With the hopes he will be born sometime early the next morning. Can you believe it? I guess there will be no major celebrations for Tyler on new years eve, but I think he is just as excited as I am to get to celebrate just a few days later with welcoming our son into the world!

To finish off the day in Toronto Tyler and I went back over to Sick Kids to meet with Winny a social worker. She took us for a tour for where we will be. We got to see 4d the step down unit first. this is where the babies come when they are getting more stable and are almost on their way home. Winny explained that all times one parent can stay with the child 24/7. If you are lucky to get a private room there is a sleeper and they often bring in a cot so that both parents can stay.

We then went to the cardiac critical care unit where we will be before surgery and following before we are sent to 4d. We didn't get to go in as there was an advisory on the door, but we were shown similar machines that the baby will be hooked up to. Seriously, those machines would put microsoft to shame.

we got to see the clinic where would be coming for follow-up care and the echo lab where the baby will get his echos done to make sure his heart is functioning well as he grows. Its all really quite a well run system. They sure do know what they are doing around there!

So this will probably be the last real visit until its baby delivering time! I hope you are all as excited as we are. Next time we leave a major post, we'll be announcing his birth and finally revealing to those that don't know.. what his beautiful name will be!

Thanks so much for your thoughts!
Tanna, Tyler and BBSeaton!

Tuesday, December 4, 2007

A Christmas Poem

This is a Poem written by Stephanie Husted a mother of an HLHS child.

Twas the night that you joined us...all eyes were on earth.
Awaiting with joy for a most special birth.
The angel's stood ready...for each need and care,
But all of them knew... that the Lord would be there,
And I labored on... and daddy was scared,
We waited...and wondered... and hoped we'd prepared.
We knew you were special...but so very sick,
Yet hope had grown in me... with every kick.
And soon it was time...into this world you came,
I heard a soft cry... then I called out your name....
And God held your hands...while the angels stood by,
Since I could not hold you...they hushed your soft cries.
One small angel looked to the father and smiled,
"Can you truly teach hope... through such a small child"?
"An infant so helpless...a baby so new...
"Oh please tell me this what you will do"?
God looked from the the baby's sweet face,
"Through him my young charge... they will learn about grace".
"I penned this child's journey...quite a long time ago,
"And through his great courage...such true love will grow".
"Every hair on his head has been numbered you see.."
"It's my hope that through him... they will learn to see me.
"Oh my little one with a special heart..."
"Great love will see you through.."
"See look that is your family.."
"They've been waiting for you.."
"I send you to their waiting arms...for a time we'll be apart.."
"But I'll always be with you...for I live within your heart.
And so we held you in our arms... And thanked our Lord above..
In you...we see the miracle, of His undying love.
So when it's Christmas morning,
And I watch my children play,
I'll need no great reminders,
For I see my gifts each day.

Wednesday, November 14, 2007

If you want to help

Well I kind of feel odd posting this but a few friends from work and the online world have asked how they can help. I really don't know right now what is going to be our biggest issue, I think basically we'll mostly be under a financial strain. We will have a lot of assistance, but if you want to help you can send us money through Paypal. I have an account set up that is directly linked to my bank account. All you have to do is go there and go to the tab "send funds". All you need to do is fill out the email address of who you want to send the money to and then the amount and where you want to take the money from (you need a paypal account to do this, but it is exceptionally easy to set up!) The email address you would send the money to is There is a link in the Great websites section on the right to take you to paypal.

Thank you for all the well wishes and prayers (and keep them coming!) I am overwhelmed by the concern and care we have been receiving. We are very lucky to have you all, and I feel so blessed! I can't wait for BBseaton to meet you all!

Tuesday, November 13, 2007

Glucose Tolerance

Boooo... Just had an OB appointment today and I now have to go for the two hour glucose test as my last one was on the high side.... Thank GOD we have a laptop as that waiting room is sooo boring! You'd think they's shell out for a t.v. or something.

Saturday, November 3, 2007

We have a DATE!

So as some of you may know, we had a follow-up appointment at Sick Kids for a fetal echo as well as an appointment at Mount Sinai Hospital with the special pregnancy clinic.
The day started off a little rocky as I wasn't told WHO or WHERE I was supposed to go once I got to Mount Sinai. All I was told was driving directions and to go to the 3rd floor of the Power Generator Building... Well little did I know that I was going to be SNAPPED at because I didn't know where I was supposed to go.. YOU'D think so. Well I had to guess... and i guessed wrong! These were the directions I was given. "go to the left all the way to the end then go right." Okay... So I go and we end up in a bunch of I kinda look confused and this man asks "Can I help you? you look lost." I say "I am lost" and I swear that was all I said. and He goes...just go this way Liz is waiting for you. And I think...who the hell is Liz? but I go and as we go Tyler points out that the hallway is getting progressively smaller and smaller. So at this point I'm starting to get upset and i can tell i'm about to cry. So I meet up with another man who again asks me if he can help me. So i tell him i have an appointment, but nobody told me where to go. but that my baby has HLHS. He points me down the hallway and says go to the second corridor on the right and you'll come in the backway to where you are supposed to be. So I go...and I'm like.. which corridor...but he;s gone...and i am full blown crying now and just so frustrated that nobody will take the time to just walk me to where I am going. I just sit down in a chair trying to calm down and Ty wants me to stop crying... (if anyone knows me thats much easier said than done. I can work myself into a frenzy) So a ladie comes out of her little office booth and Tyler explains to her whats going on and she just takes me to where i am supposed to go. "Special Pregnancy Clinic" Hello if anyone would have thought to tell me that I could have avoided the whole stress.

ANYHOO... so I have my appointment where they basically take my background and then do a scan of the baby. The Tech was so good she pointed out everything to us. (Tyler cannot figure anything out) and apparently he has a rather large head. LOL and he weighs approx 3 lbs 7oz.
Everything else with him is normal and he is considered healthy, other than his heart defect.

So I get the same old questions about having an amniocentesis. (NO THANKS) and questions about why we want to choose surgery over transplant... and if we've been told all the options. (obviously this Dr. doesn't know how honest and up front Sick Kids is with parents)

Anyhoo.... He has set a "temporary induction date" for Jan 3rd 2008. WOOHOO!!! i still have to go back to meet with the antenatal team and doctor that will be delivering. An appointment has yet to be set up for that. But unless something unforseen happens...Thats the date!

As for my time at Sick Kids...We had another echo and there was no change in diagnosis. We got to ask a few questions. but basically things are still just a waiting game.

We got to meet with a socialworker who basically just told us about a few places to stay (apparently it'll take some time to get into the Ronald McDonald House) and we put off having a tour until our next visit. Then we met with Jennifer one of the Single Ventricle Nurses. She explained a lot of what her job is and what will be happening once BBSeaton is out of critical care. She explained about the milestones that we'll have to reach before he can come home. and how we'll be set up with a pediatrician here in London. We're hoping also that he will be able to have after care at the Childrens Hospital here in London with Dr. Pepalassis. If he has care here in London that will make us elegible for a reimbursment program where we can get most of the money back we spent while in hospital. There will also be a home nurse that will come for weekly visits to check all of the baby's vitals and make sure he's gaining weight and generally healthy.

As you can see, we are in for the ride of our lives. I have no doubt that I am carrying one of the strongest little boys right now. I was talkin to Tyler about how it'll be nice once this is all over to have the baby fall and scrape his knee be the biggest thing we have to worry about. It'll be kind of ironic to console him for such an insignificant thing considering everything he's going to have to go through.

I am so lucky to have him in my life!

Monday, October 22, 2007

Here we go again

For anyone that has subscribed or actually keeps updating themselves on here, we're heading back to Toronto Nov 2nd.
We have a meeting at 10 am at Mount Sinai to meet with the High Risk Obstetrics Team. Hopefully we'll have an induction date then! Then at 1pm we're back at Sick Kids to have another fetal echo (ultrasound to look specifically at baby's heart). Hopefully no more complications have arrised and we're still just a classic case of HLHS (no other additional defects on top of things). I think we'll be meeting with our cardiothorasic surgeon too. (The hero that will perform surgery). Not to forget the "single ventricle nurse" that will be taking on our case. (these nurses have one patient at a time to ensure they notice any small changes. That way they can't confuse one patient with another and can alert doctors immediately when something is happening).
Oh and then the end will be to meet with a social worker who will explain all about the financial aide we can recieve and give us more information on the Ronald McDonald House as well as a list of hotels that give us hospital rates.

Special thanks to Dave Khey for getting us a discount at the Marriot Eatons Center. Majorly discounted plus it will still be included in the financial relief so even less! Yay for luxury!

Another Thanks to the families from your stories have really helped us to prepare for what we're about to experience. I must keep in mind this is a "two steps forward, one step back" sort of journey. I must have trust in the professionals to do all they can to save BB seaton's life!

Monday, October 15, 2007

God Said NO (This is SOOO neat!)

This is GREAT!.............

God Said No

I hope that you can get the effects on your computers! The words are great, but the movements of the faces add a lot....

I asked God to take away my habit.

God said, No.
It is not for me to take away, but for you to give it up.

I asked God to make my handicapped child whole.
God said, No.
His spirit is whole, his body is only temporary

I asked God to grant me patience.
God said, No.Patience is a byproduct of tribulations;
it isn't granted, it is learned.

I asked God to give me happiness.
God said, No.I give you blessings; Happiness is up to you.
I asked God to spare me pain.
God said, No.Suffering draws you apart from worldly cares
and brings you closer to me.

I asked God to make my spirit grow.
God said, No.You must grow on your own! ,
but I will prune you to make you fruitful.

I asked God for all things that I might enjoy life.
God said, No.
I will give you life, so that you may enjoy all things.

I asked God to help me LOVE others, as much as He loves me.
God said...Ahhhh, finally you have the idea.

If you love God, send this to ten people and
back to the person that sent it.


May God Bless You,

'To the world you might be one person, but to one person you just might be the world'

'May the Lord Bless you and keep you,
May the Lord Make his face shine upon you,
and give you Peace.....Forever'

'Good friends are like stars...You don't always see them,
but you know they are always there



Friday, October 12, 2007

Some Mothers get Babies with Something More

Some Mothers Get Babies With Something More
Written by: Lori Borgman Columnist and Speaker

My friend is expecting her first child. People keep asking what shewants. She smiles demurely, shakes her head and gives the answer mothers have given throughout the ages of time. She says it doesn't matter whether it's a boy or a girl. She just wants it to have ten fingers and ten toes. Of course, that's what she says. That's what mothers have always said. Mothers lie.

Truth be told, every mother wants a whole lot more. Every mother wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin.Every mother wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly. Every mother wants a baby that will rollover, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two). Every mother wants a baby that can see, hear, run, jump and fire neurons by thebillions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class. Call it greed if you want,but we mothers want what we want.

Some mothers get babies with something more. Some mothers get babies with conditions they can't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. Most of those mothers can remember the time, the place, the shoes they were wearing and the color of the walls in the small, suffocating room where the doctor uttered the words that took their breath away. It felt like recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind clean out of you. Some mothers leave the hospital with a healthy bundle, then, months, even years later, take him in for a routine visit, or schedule her for a well check, and crash head first into a brick wall as they bear the brunt of devastating news. It can't be possible! That doesn't run in our family. Can this really be happening in our lifetime? I am a woman who watches the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. The athletes appear as specimens without flaw - rippling muscles with nary an ounce of flab or fat, virtual powerhouses of strength with lungs and limbs working in perfect harmony. Then the athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

As I've told my own kids, be it on the way to physical therapy after a third knee surgery, or on a trip home from an echo cardiogram, there's no such thing as a perfect body. Everybody will bear something at sometime or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, medication or surgery. The health problems our children have experienced have been minimal and manageable, so I watch with keen interest and great admiration the mothers of children with serious disabilities, and wonder how they do it. Frankly, sometimes you mothers scare me. How you lift that child in and out of a wheelchair 20 times a day. How you monitor tests, track medications, regulate diet and serve as the gatekeeper to a hundred specialists yammering in your ear. I wonder how you endure the clich├ęs and the platitudes, well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike. I even wonder how you endure schmaltzy pieces like this one — saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this. You didn't jump up and down in the motherhood line yelling, "Choose me, God! Choose me! I've got what it takes." You're a woman who doesn't have time to step back and put things in perspective, so, please, let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a drafthorse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, carefully counter-balanced against the stubbornness of an Ozark mule. You can be warm and tender one minute, and when circumstances require intense and aggressive the next. You are the mother, advocate and protector of a child with a disability. You're a neighbor, a friend, a stranger I pass at the mall. You're the woman I sit next to at church, my cousin and my sister-in-law. You're a woman who wanted ten fingers and ten toes, and got something more.
You're a wonder.

Tuesday, October 9, 2007


Well, this is just a day of deep thinking...thoughts swirling and swirling. I sure can't wait until we go to Sick Kids again. (Nov 2nd) So many questions and worries and i just need some answers. I am stressing so much over whether of not to put BB Seaton through the hybrid procedure or to just go straight into stage 1 Norwood. I hear so many stories of babies coming out of the Norwood and doing well, i wonder if its even neccessary to go though the hybrid....isn't that just delaying the inevitable? Wouldn't you want to get the biggest hump out of the way...instead of puting it off until the baby is bigger and the hump is a little bigger? Whats the logic behind that? I hope the surgeons have some answers for me... as well as the single ventrile nurses.
I mean I know that every baby is different, but can we not generalize here even a little bit? These single ventricle nurses have been there every step of the way with babys hybrid or no hybrid. They must have some inclination on how much of a benefit the hybrid is for the baby.

Anyhoo, I'm attaching pictures of my support... my sisters and my nieces...and me...and BB seaton is in there too, he's hiding behind the belly button...:) This was taken at Thanksgiving (Canada) at Mom's house... notice how the stress is wearing on me... I dunno how we're supposed to make it through this... BB seaton isn't even here yet and he's giving me grey hair!

Sunday, September 30, 2007

The Hybrid Procedure

Here is a bit of information about a new procedure that we may be elegible for. I'm currently weighting the pros and cons, but am leaning towards having this procedure first!

What are some of the more complex conditions requiring surgery?
The patients we're concerned with here are called "single ventricle patients," and that includes those with hypoplastic left heart syndrome (HLHS). Normally, you're born with two circulations: the right heart supplies the pulmonary circulation and the left heart supplies the systemic, or bodily, circulation. Some kids are born, unfortunately, with a deficient ventricle. In HLHS, it's that all-important left one. It can be so small that it's not even visible, and there's no evidence that it's there. Those are children who, 20 years ago, would have uniformly died.

Now, they often live because we perform palliative surgery on them. That may sound like a misnomer, but we call it palliation because it's not a cure. These babies live with their cardiac defect for the rest of their lives, in one way or another. Even under the best circumstances, they will need three surgeries very early on: one at birth (the Norwood), one at 6 months (the bi-directional Glenn Shunt) and one at 2 years of age (the Fontan). On the positive end of this spectrum, a patient can undergo these palliative surgeries and be asymptomatic. On the other end, there are those children who struggle with the one ventricle and who will need a heart transplant or, unfortunately, don't make it through the palliation.

Are there alternatives to the three-stage surgical approach for HLHS?
Yes, there's a hybrid procedure. The traditional way to treat HLHS begins with a Stage I Norwood Procedure, which is major reconstructive surgery laying out the connections in such a way that the right ventricle outflow of blood is directed into the body and pulmonary inflow is enabled passively. That's a lot of surgery and has to be done in the first two weeks of life.
By using the hybrid procedure, you basically establish a stable outflow by implanting a stent in the ductus arteriosus, which connects the pulmonary artery to the aorta. You then band the branch pulmonary artery to restrict some of the pulmonary blood flow. That can all be done without cardiopulmonary bypass. It typically takes between an hour and 90 minutes, as opposed to a six-hour, much more invasive Norwood. Most importantly, you're delaying the major reconstruction until the second stage. The reasoning behind this is that, at that point, the baby is older and stronger and has built up some immune defenses. A further advantage is reducing the number of "pump runs," those stretches of operating time involving the bypass machine, from three to two. Saving that pump run could result in a better outcome.

Why is it called a hybrid procedure?
It's called a hybrid because we're combining techniques that the interventional cardiologist typically uses in the cath lab, such as stenting, with surgical techniques. There are two operators—the interventional cardiologist and the cardiovascular surgeon—working together.

Tuesday, September 25, 2007

A Medical Explanation

Here is some info I found on i village. (we're really learning about this now along with everyone else.)

The Norwood procedure is the first in a series of three open-heart surgeries that gradually improve certain heart defects that are present at birth (congenital heart disease). It is most often used to treat congenital defects in which one or both of the lower chambers of the heart (ventricles) are defective. The Norwood procedure cannot cure the underlying heart defects, but may enable young patients to regain their health. The term "Norwood procedure" is sometimes used to refer to all three stages of the surgeries together.

Each of the three surgeries is done at a different age, beginning from infancy and continuing into the toddler years. The first two surgeries (Stages I and II) are used to temporarily relieve blood flow problems to and from the lungs. The third surgery (Stage III) is used to further improve circulation. The Norwood procedure re-routes the blood flow around some of the defective areas of the heart by creating new pathways for blood circulation to and from the lungs. Despite the complexity of the procedure, many children go on to live a relatively normal lifestyle after completing all three stages. The most common heart defects that are treated by the Norwood procedure are:
Hypoplastic left heart syndrome.

About the Norwood procedure
The Norwood procedure is the first in a series of three open-heart surgeries that gradually improve specific life-threatening forms of congenital disease heart in which one or both of the lower chambers of the heart (ventricles) are defective. The three surgeries are done at three different ages, which are as follows:
Stage I (the Norwood operation) is done soon after birth.
Stage II (the bidirectional Glenn procedure, partial Fontan, semi-Fontan or a staging procedure before the Fontan) is done at three to nine months of age.
Stage III (the Fontan procedure) is done between 18 months and 4 years of age.
The term "Norwood procedure" is sometimes used to refer to all three stages of the surgeries together. The complete three-stage procedure can almost always be performed, and it offers great hope to the vast majority of infants who would probably not survive a month without it.

Stage I for left ventricle defect
If the left ventricle is defective and the right ventricle is relatively healthy, the Norwood procedure turns the right ventricle into the main pumping chamber of the heart. This is accomplished by connecting the aorta and the pulmonary artery with a vein graft from elsewhere in the body or synthetic materials such as Dacron. This new pathway between the aorta and the pulmonary artery is called a Blalock-Taussig shunt. Blood is pumped from the right ventricle and through the pulmonary artery to the lungs and to the rest of the body (via the aorta). The flow of blood bypasses the faulty left ventricle altogether.
Another technique involves making a small hole in the right ventricle and inserting a small synthetic material tube to connect the right ventricle to the pulmonary artery. This may be termed a Sanno procedure.
A component of the stage I Norwood procedure is reconstructing the aorta by sewing the base of the pulmonary artery (main pulmonary artery) to the underdeveloped base of the aorta. Other segments of the aorta may require synthetic material to enlarge the vessel. The pulmonary arteries that go the lungs (right and left pulmonary arteries) are completely separated from their base and receive all of their blood flow from either the Blalock-Taussig shunt or the Sanno procedure. The valve of the pulmonary artery will function as the aortic valve for the rest of the patient's life.
Under normal circumstances, the blood in the right ventricle is oxygen-poor blood returning from the body. However, in addition to creating a Blalock-Taussig shunt during the first stage of the procedure, the physician may also cut away the septum between the heart’s two upper chambers (atria). This allows oxygen-rich blood returning from the lungs to the left atrium to mix with the oxygen-poor blood in the right atrium. In turn, this oxygen-rich blood passes into the right ventricle and is pumped out to both the lungs and the rest of the body via the pulmonary artery and the newly established Blalock-Taussig shunt. After the first stage of the procedure, the right ventricle becomes the main or only chamber responsible for pumping blood to the lungs and to the tissues and organs of the body. A newer procedure has also been developed that avoids use of the heart-lung machine in patients with a left ventricle defect. During this less-invasive procedure, physicians open the chest briefly to gain access to the pulmonary arteries and aorta. They then place restrictive bands around the pulmonary arteries to narrow them and raise the blood pressure in the right side of the heart. Next, they connect the aorta to the right side of the heart with a stent. This creates a right-to-left shunt in which the high blood pressure in the right side of the heart forces blood through the stent and into the aorta. This procedure can replace the first stage of the three-stage process in some patients, allowing them to strengthen before the second and third stages are performed. This procedure is still being developed and is still not widely undertaken
Stage II of the Norwood procedure
Stage II of the Norwood procedure, also known as the Glenn procedure, is typically performed when the infant is between three and nine months of age. It connects the superior vena cava (the large vein that collects oxygen-poor blood from the upper part of the body) directly to the pulmonary artery. This new pathway allows oxygen-poor blood from the head and upper body to flow directly to the lungs, bypassing the heart and defective ventricle. Once the blood receives fresh oxygen in the lungs, it goes back to the heart and is pumped out to the body. At this stage, the Blalock-Taussig shunt or Sanno procedure is removed because oxygen-rich blood can now circulate throughout the body. This is a crucial step in avoiding the mixing of red (oxygen-rich) and blue (oxygen-poor) blood. However, the complete operation is only half-finished because the oxygen-poor blood returning from the lower part of the body has not yet been re-routed. After this stage, the baby will still have a bluish tinge, but will be better able to handle infection and other problems.
Stage III of the Norwood procedure
Stage III of the Norwood procedure is also known as the Fontan procedure. It is performed between 18 months and four years of age. In this stage, both the right atrium and the inferior vena cava (the major vein that collects oxygen-poor blood from the lower part of the body) are connected to the pulmonary artery. Now the oxygen-poor blood from the upper and lower body flows directly to the lungs bypassing the heart completely. The resulting oxygen-rich blood circulating to the entire body will result in a normal, healthy skin tone. Depending upon the nature and severity of the heart defects, some children may be healthy enough after stage II that stage III is not necessary. One variation of Stage III is known as the lateral tunnel Fontan, or a total cavopulmonary connection (TCPC). In this procedure, a patch (made of either synthetic materials or the patient's own tissue) is used to create a tunnel within the right atrium. The tunnel links two major veins, the superior vena cava and the inferior vena cava, and is then connected to the pulmonary artery. A slight variation of the lateral tunnel Fontan is the fenestrated Fontan. In this procedure, a hole is made in the tunnel. This hole allows for decompression of the blood into the right atrium when the pressure within the tunnel gets too high. Later, if the patient has stabilized, the hole can be closed with either a stitch or a cardiac catheterization procedure.
Benefits, risks and survival rates
When the Norwood procedure is complete, oxygen-poor blood can move directly from the veins to the lungs without having to be pumped by a defective ventricle, and oxygen-poor and oxygen-rich blood are no longer mixed.
Similarly, oxygen-rich blood will be pumped to the body by the healthy ventricle. In the case of total cavopulmonary connection (TCPC), the creation of this tunnel lessens the amount of turbulence and inefficient blood flow that occurs.
The recovery from the Norwood procedure can be complicated due to the complexity of the surgery. Most children remain in the hospital for three to four weeks. A smaller percentage may continue to experience problems in the first few months of life. This procedure has a number of side effects. For example, there is increased pressure in the veins because only one ventricle is pumping in the heart. As a result, the body may retain fluid (edema), and there may be some facial puffiness. Fluid may also build up in the stomach or chest. To relieve the extra pressure, a hole is sometimes left in the lateral tunnel to the right atrium.The Norwood operation is considered a complex procedure but survival after each of the three stages of surgery is 80 percent or higher. Long-term survival at five years of age is 70 percent. Once they have gone through all three stages, most children go on to live fairly normal lives, although they must continue with close medical management. However, there are problems that may cause trouble for some patients in both the short and long terms. Up to 40 percent of patients who have had the Fontan operation experience significant arrhythmias over the long term. Those patients require careful follow-up therapy and medical management for this potentially dangerous problem. Another 13 percent develop a syndrome called protein-losing enteropathy in which excessive protein is lost through the gastrointestinal tract, along with symptoms of heart failure. These patients require close medical management throughout their lives.

Monday, September 24, 2007

a description of HLHS from a mom.

After having done research, I understand a lot of the terms used in dealing with this defect, but its much easier when explained in this manner. Taken from a mother who has gone through two o the three surgeries with her daughter...
In HLHS, the left ventricle, which is responsible for pumping oxygenated blood to the body, is underdeveloped. Sometimes it's so small it's basically not even there, other times it is there but not able to perform its function adequately. Normally the right ventricle pumps deoxygenated (blue) blood to the lungs, then it goes back to the left ventricle to be pumped to the body. Since the LV can't do this, in an HLHS patient the heart must be modified. The three-stage surgical procedure reroutes the flow of blood so that blue blood goes straight to the lungs, is oxygenated, and then goes to the heart where the right ventricle pumps it out to the body. Basically the heart is converted to a two-chamber heart. It's a lot to wrap your mind around, but the more you hear it and see drawings of it the more it begins to make sense.The medical field has come a long way in treating HLHS, although it has only been successfully treated for about 20 years. The oldest living HLHS patients are now in their early 20s. I know lots of people with HLHS babies/children, and the positive outcomes outweigh the negative. Here are some links to sites I've found to be helpful:


Welcome to our baby boy's Blog... We've decided to start this blog because our unborn son has been diagnosed with Hypoplastic Left Heart Syndrome. This is one of the most severe congenital heart defects that can happen.
I was 23 weeks pregnant when we were diagnosed with this defect. I'll explain later more of what the defect really is. Before I really had my head wrapped about what was happening to my baby, the doctors were telling me. "This was a once fatal condition, you have a few options... 1. terminate the pregnancy right now. 2. continue with the pregnancy and do nothing, take baby home and let it die within a few days. 3. Staged open heart surgery that will require a minimum of three operations to change the heart from its current conditions to one that can sustain your baby's life 4. Heart Transplant. As I was sent home from the meeting with doctors to be told this news my mind was reeling.. I was going over my choices really unsure as to what really was wrong. I knew deep in my heart, this baby was going to be born unless there was absolutely no chance of survival.
My doctors had scheduled me to meet with the cardiolgists at The hospital for sick Children in Toronto (SickKids) Two days after first hearing about HLHS I was once again letting doctors look at my baby's heart through a fetalecho (ultrasound for the heart) I met with Dr Jaeggi head of cardiology, and he gave me hope. He'll forever be a hero to me for that hope, for without hope, we have nothing. After hearing the same options, Tyler and I have decided we are going to try for surgery. (more to come in upcoming blogs about this) "baby boy" is going to be born in Toronto at Mount Sinai where he will immediately be taken to SickKids where he will be in critical care until his first surgery (a few days of life)

This blog is being created, not only as a journal to remember everything that we are about to undertake, but as well to allow all those who support us and care about this baby a way to get the most up to date information. I'll be doing my best to keep this page up to date (even when not wanting to leave my baby's bedside). I'm sure there will be even more benefits from this blog. but right now its a place to organize my thoughts and prepare... This is one of the most scariest things I will ever do.