Saturday, May 30, 2009

Back to Waiting

I know I was looking into terminating this pregnancy. Mainly the news just kept getting worse and worse and I felt like it would be 'easier' to terminate than to carry to term. I am finding that is not the case. The thought of having a D&E at an Abortion Clinic is NOT what I want for my daughter. I can't even imagine it and I have finally given up on that least I have given up on the idea of an Abortion Clinic. I really want Hope to be born alive and have a chance to say hello and goodbye to her. I don't know if there are any doctors in this area that would consider inducing labor early, but if not I will carry her to term and figure out the family situation (what to do with Jerry and Paul) at that time.

Jerry and I have barely spoken about the decision and I am not sure how he feels about it anymore. I know he felt it would be better for me and the family to terminate earlier, but I really believe that he will be OK with any decision I make. Our lives have definitely changed since I found out about Hope...Jerry and I don't talk as much and haven't been intimate with each other in weeks. I know that he is waiting for me to tell him what I want, but there are times when I really don't know what to say to him. I am depressed most of the time and I know he can feel it when he is at home. I just wish he would make the time to hug me or talk to me about how I feel. There are times I feel truly abandoned by him when I really need him to be here for me. I know that he is thinking about everything and is grieving in his own way...although he may not be grieving at all right now. I don't know if it has really sunk in that Hope will probably not be in our lives very long, but once it sinks in for him...I know he will grieve deeply. I just want our marriage and our family to make it through this and hold on to each other and realize how wonderful our lives really are. I love Jerry with all my heart and know that we can make it through just about anything together. We just need to start communicating again.

I guess I need to start thinking about getting stuff together for Hope. I really want Jerry's mom and sister Danielle to make her a beautiful outfit for when she is born. There are so many details that need to be worked out now that I have made my decision and I don't even know where to begin. There is a lot of help available through the hospital and I plan to discuss everything with them sometime next month. I really want to celebrate my 40th Birthday without having any appointments and not having to worry or think about Hope. I know that is really not possible...I think about her almost every minute of every day.

I hope I am making the right decision for our family. I know I will think about this decision for the next 4 months and I really want to spend some time really enjoying the rest of this pregnancy. I have loved being pregnant and I don't want my fear to change how I feel when I am pregnant.

Thursday, May 28, 2009

I Hate This

whole situation. I am totally depressed and cry all the time. I really don't think I can handle terminating my pregnancy and I really don't know how I will manage to carry Hope to term and then watch her die. This is impossible and really unfair that I have to make the decision.

I called clinics today and found out that there is only ONE that will terminate up to 24 weeks. It is the one clinic that Kristin (my counselor at the hospital) said she would NOT suggest. The person I talked to was NOT compassionate at all and made me feel like I was just one of the many people that come in there to terminate. I would at least like some sympathy with the decision I have to make and I can't seem to find anyone that really cares how I feel or that will help me make terminating a little more compassionate.

I think I am back to carrying Hope to term and then holding and watching her pass away in my arms. This is something I am fearing with every part of my body, heart, and mind. I am also worried about Jerry and Destiny and how they will feel and what they will go through with me. I know I will feel better about this decision, but it breaks my heart that I will have to put this kind of grief into the lives of Jerry and Destiny. I don't think it is fair at all that they need to experience death at their ages. They don't understand that Hope is really sick and that she won't make it through the surgeries (even in the unlikely world that she was a candidate for them).

I am so depressed and angry right now that I don't really know what I am typing. I just know that the tears stream down my face almost all day and I don't know how to make them stop or even if I want them too.

No poem with this post as I can't even imagine that any of them would really be able to communicate how I am feeling.

Wednesday, May 27, 2009

Heartbreaking Choice

I went to see Dr. Silber yesterday. I had an ultrasound and cried throughout the whole thing. I used to love having ultrasounds, but now I just equate them with pain and just plain unhappiness. I saw Hope's heart beating and knew that the only reason it is still beating is because she is inside of me. It really hit home yesterday that I am her lifeline and when she is born, she will not live. I really started thinking about medical termination while I was watching her on the ultrasound screen. I think I just cancelled out that idea because I never thought I would be able to do I am really not so sure. I am beginning to think it will be harder on everyone if I carry her to term and then have to watch her die. I have 4 more months and it seems like an eternity. I will have to see her at every appointment and wonder why I am prolonging the inevitable. Right now it just doesn't seem fair to have to make this decision and it becomes harder and harder every day.

At the end of the ultrasound, the coordinator (Kristin) asked if I wanted to have the repeat amnio and include a micro-array...which basically looks at all genes from the amniotic fluid to see if there are any other issues. I decided to go ahead and have it done because I am really not sure whether or not I will continue with the pregnancy and want as much information as possible about what may have happened. The amnio didn't hurt at all and I was happy that I may be able to find out about her genetic makeup.

After the ultrasound I had a transfer of care appointment with Dr. Silber where she basically went over the records she received from Dr. Funk. While I was waiting for Dr. Silber, Kristin and I had a long time to talk about the different options. She knows how I feel about making sure I receive the ashes for Hope if I terminate and she is trying to find someone that will do that for me. I really want to make sure I have a memorial service or at least some form of rememberance in her honor.

After all the appointments, I had to drive home. It was a LONG drive home with a lot of thinking and a lot more crying. I just can't seem to stop crying and wondering if any decision I make will be the right decision. I know that if we decide to terminate, we will tell everyone that we lost Hope. I don't want or need the judgement from other people and it will actually be the truth. Once she is no longer inside of me, she will not live. It is really sad to write this and even more sad to think about.

I spent some time with Marilyn...she was nice enough to get up really early in the morning and come all the way out to Medina to pick up Paul and Jerry so I could go to my appointment. She has gone through terminations and I figured she would be the perfect person to talk to about everything that is going on. I know she really doesn't believe in terminating a pregnancy anymore, but I wanted to hear what she had to say. It was actually a bit disappointing because she made me feel guilty about possibly terminating the pregnancy. I really thought she would be the person to talk to about how I felt, but she really doesn't understand either. I know everyone is thinking a miracle can happen, but they are not there through the ultrasounds and the echocardiograms to see that her little heart is just not all there. If I thought there was even a possibility that it would miraculously grow all of its chambers, I wouldn't even consider terminating...but I know the truth and she will not miraculously grow her left ventricle.

When Jerry came home from work last night I talked with him about possibly terminating the pregnancy early. He again stressed that it is my decision and he will support me in whatever decision I make. He also said that he would fully understand me not being able to carry her to term and how heartbreaking it will be to let her go after spending 9 months with her inside of me. Even though he will not tell me exactly how he feels, I think it would be easier on all of us if we terminated early...rather than waiting for her to be born and then have to watch her die.

I spent the night reading "Our Heartbreaking Choices" ( and really felt a connection with many of the women in that book. Terminating for medical reasons is one of the hardest decisions anyone can make and it is not fair that anyone should have to make this decision. But, the book also gave me hope and it made me realize I am not alone. There are MANY women out there that have had to make this very personal decision.

A Mother's Love

A mother's love is something that starts right from conception
You form a bond with your baby full of love and deep affection
Before you even know it you've planned their entire future
It may be a little optimistic but it's only mother nature

But then one day you're told the news you never want to hear
'Your baby's not forming right', it's every mothers fear
So now your future life has to be tragically torn apart
To be replaced by grief and a pain that fills your heart

You'll often sit and wonder what is was that you did wrong
To be denied the life of the child you'd carried for so long
All those medical workds race around your head again
But the outcome of it was if she lived she'd suffer pain

And so you decided that you had to let her go
You did what was best for her because you really love her so
Even though she's gone and you're no longer a mother to be
Just remember it was your love that helped to set her free

This poem has really helped me understand how painful this decision is and how much I would like anything other than having to make this decision. I know any decision I make will be made out of love for Hope, but it is still hard to contemplate this decision and come to peace with it in my heart.

Friday, May 22, 2009

Too Much Thinking

I think I am spending too much time thinking about everything that has happened, what might happen, and how I will feel when something does happen...and the problem is, I know something is going to happen. I spend a lot of time with the boys and they are bringing me more joy than I can write. I find myself really treasuring the small things that they do, but there are times when I am doing this that I catch myself thinking that Hope will never be able to do the same thing. She won't be able to spend time outside with the trees, the lake, the birds, the sun, the wind, or anything else that God has created. Her short life will consist of the hospital and that is really sad to think about.

Jerry and I have been talking a lot more about our choices and the decisions that we have to make and it makes it more 'real' every time that we talk. When Hope is born, we will have a very short amount of time to spend with her. I want the time to be meaningful and I want to spend as much time with her as possible. I know Jerry does not understand how I feel yet...he doesn't really think it is 'real' and probably won't until she is here. I am the one that needs to make all of the plans and meet with everyone to discuss our (my) wishes. Jerry doesn't understand the need for pictures and I can't imagine not having pictures of her. I just don't want to forget her or how she looks, smells, and feels. I am meeting with the Palliative Care Group next week and there are a lot of details I want to discuss with them. I am gathering a lot of information from many different websites, including personal stories, about what other people did when they lost their children and also about things they did not do that they now regret. I want her life (no matter how short) to be special and to show her how much she is loved. I want her to be remembered forever.

This poem is special and reminds me every day that even when we let Hope go, we will not be letting hope for the rest of our lives go with her. We will love and cherish the time she was with us and remember the long journey:

When things go wrong,
as they sometimes will,
When the road you're trudging
seems all uphill,

When the funds are low,
and the debts are high,
And you want to smile,
but you have to sigh,

When care is pressing you down a bit,
Rest if you must,
but don't you quit.

Life is queer with its twists and turns,
As everyone of us sometimes learns,
And many a failure turns about,
when he might have won had he stuck it out;

Don't give up though the pace seems slow,
You may succeed with another blow.
Success is failure turned inside out,
The silver tint of the clouds of doubt,

And you never can tell how close you are,
It may be near when it seems so far;
So stick to the fight when you're hardest hit,
It's when things seem their worst that you mustn't quit!

~C. W. Longenecker~

This poem reminds me that even though I grieve for my loss, I still have a life to live and this is another lesson I must learn in my short time on earth. My boys still need me (all of them) and I need to spend time cherishing all of the time I have with all of them.

Thursday, May 21, 2009

Meeting with Dr. Smith

We had the meeting yesterday with the Cardiothoracic Surgeon, Dr. Philip Smith at Akron Childrens Hospital. He was really a nice guy and answered all of the questions I had for him. He went on to explain some things that I did not think how much more advanced the surgeries have become and why there are so many babies alive now due to the surgeries. Not all babies are candidates for the surgeries and they have been able to determine inutero whether or not the baby will be a good candidate. So basically that means that mothers are now informed sooner and have more time to make decisions as to what they want to do.

Based on our echocardiogram...Hope is not a candidate for the surgeries; however, we are planning another one next week to see if that is still the case. There is no intra atrial communication, which means that her atria and aorta are closed, not just small. That was the saddest part of the whole meeting and I think Jerry and I both realized just how bad everything is right now. He indicated that on the spectrum of HLHS, Hope is on the 'bad' end of the spectrum...meaning if we were to have the surgeries performed, she probably would not be able to survive them. The realization and actually typing these words is just about killing me and my heart aches and feels so heavy right now. It is not the news we were hoping to receive.

I think we have also made a decision to carry Hope to term and let God take her on his own time. That way we will be able to donate any organs that are viable and also to have a memorial and funeral for her. I feel comfortable with that decision...although seeing her and knowing she will pass on will probably break my heart...I feel we are letting nature take its course, rather than making the decision to terminate the pregnancy early. I just hope Jerry will be OK with the decision. He is having a really hard time with it and I think he would be more comfortable with terminating the pregnancy now, rather than waiting. I really wish we did not have to make this decision. It has been so painful and I fear that the rest of my pregnancy will continue to be just as painful and I think that is why Jerry feels that if we terminate earlier, I will be able to grieve earlier and possibly move on.

Another poem that I feel is very relevant to how I feel right now:

My grief is like a river,
I have to let it flow,
But I myself determine,
Just where the banks will go.

Some days the current takes me
In waves of guilt and pain
But there are always quiet pools
Where I can rest again.

I crash on rocks of anger
My faith seems faint indeed
But there are other swimmers
Who know just what I need

And loving hands to hold me
When the waters are too swift
And someone kind to listen
When I just seem to drift

Grief's river is a process
Of relinquishing the past
By swimming in Hope's channels
I'll reach the shore at last

~Cynthia G. Kelley~

Tuesday, May 19, 2009

A Little More Information

I talked to Dr. Chandrakant Patel yesterday (the cardiologist that performed the echo) and he indicated that he didn't think Hope would be a candidate for the prenatal surgeries that I found online. I am going to paste the information on the surgeries, but I really don't understand much of them:

In a small subset of fetuses in which the hole between the atria is closed, a new procedure that opens the hole before the baby is born has been developed. This new procedure is known as fetal balloon atrial septostomy.

There is another subset of children who develop a problem with the aortic valve that then leads to enlargement of the left ventricle. The left ventricle then shrinks causing hypoplastic left heart syndrome. One proposed surgical stratey is to open the aortic valve before the left ventricle shrinks.

From what Dr. Patel indicated, Hope's left ventricle has already shrunk, so she is not a candidate for the procedure. He also told me the following:

1. The left ventricle is VERY tiny
2. He was not able to find an aortic valve
3. He was not able to find an ascending aorta
4. There is no blood flow going through the left aortic valve
5. Without two functioning kidneys, the surgeries will be very difficult for her to recover from and may cause her other kidney to fail

We have an appointment with Dr. Philip Smith (Cardiothoracic Surgeon) tomorrow to determine whether or not Hope would be able to have any of the surgeries based on all of the heart and kidney problems found through the ultrasound and echocardiogram.

Based on the information we have now, it looks like we will be carrying Hope (as long as she survives inside of me) until the end of July or early August. I am hoping they will be able to induce me a little early...with Jerry starting school and not having anyone here to watch Jerry and Paul...we think this would be the best time for her to be born. We will request no surgical intervention and let God decide when to take her to heaven. This will give me the piece of mind knowing that she really is mine and we will be able to have a proper memorial and funeral for her.

It breaks my heart writing this and I am hoping that we will get better news from Dr. Smith tomorrow or from Dr. Patel next week (I wanted another echo, just to make sure nothing has changed...or hopefully things have changed for the better).

I will update with the results of the meeting tomorrow. I am hoping we get good news, but based on the echocardiogram we doesn't look very good. Hopefully Dr. Smith will be more encouraging.

Another excerpt from a beautiful poem I read:

A heart mom is always a heart mom.
Now wise beyond her years.
For those who have angels in heaven,
Our hearts share in all of your tears.

Every day I will try and remember,
I was chosen for her (and no other).
I will always embrace that beautiful day…….
When I became a “Heart Mother”.

Everything that we have gone through is unimaginable for anyone that has not been where we are. I am hoping no one will judge us for the decisions that we make. We are making our decisions based on the best information that we have available. We are slowly accepting that our little girl is very sick and we do not want her to suffer at all. I think most parents want the best life for their children. When your world comes crashing down from a diagnosis that you cannot change, you question everything you once knew...about yourself, your life, your God, and the people around you. It is something I don't want anyone to ever go through. I hope that one day there is a cure for HLHS and when a diagnosis is made, the heart will be able to be fixed without open heart surgery and without any suffering.

Monday, May 18, 2009

The Weekend

The weekend was not as bad as I thought it would be. My husband and I talked a little about Hope, but not nearly as much as I would have liked. He says he does not want to influence my decision either way because he doesn't want me to blame him and have our marriage fall apart. He broke down for the first time and we cried together over the fact that we actually have to make a decision. I think that is the most unfair part of this whole prenatal diagnosis. If we hadn't known, we wouldn't even be having these conversations.

I spent a lot of time with my boys this weekend...mostly outside playing and it was great. There were a few times that I broke down and cried thinking Hope may never be able to enjoy our huge yard and have all the fun the boys have. Even if she makes it through all three surgeries, there is no guarantee that she will be able to lead the life that she deserves and that the boys enjoy so much. That is something that is making the decision that much we bring her into this world knowing that she will be spending most of her young life in and out of the hospital having surgery after surgery and hooked up to machines to help her live. we let her rest in peace in God's arms without having to feel the pain of all the surgeries.

I have been putting a list together or questions to ask the surgeon on Wednesday and I think that is the day we will be making the biggest decision of our lives. If her heart problems are as bad as we think (we really were not in the right frame of mind to really comprehend what the cardiologist was telling us after the echocardiogram) then our decision may be easier...although not easy by any stretch of the imagination.

I found this poem online today and it really makes me feel that God will watch over and take care of Hope no matter which decision we make:

Daddy please don't look so sad, Mommy please don't cry.
I am in the arms of Jesus and He sings me lullabies.
Please don't try to question God, don't think He is unkind.
Don't think He sent me to you and that He changed His mind.
You see, I am special and I'm needed up above.
I'm the special child you gave Him, the product of your love.
I'll alway be there with you,

So watch the sky at night.
Find the brightest star that's gleaming,

That's my halo's brilliant light.
So Daddy please don't look so sad.
Mommy please don't cry.
I am in the arms of Jesus,

And He sings me lullabies.

Even though it breaks my heart to read this poem and especially to think that Hope may not be here on earth with us, I know that she will be with God.

Thursday, May 14, 2009

The News

Yesterday we got the news that we really didn't want to hear. Hope has Hypoplastic Left Heart Syndrome. It was totally unexpected and we are devasted and overwhelmed by the information. This is my first attempt at a blog, but I really wanted to create something that has my thoughts about this diagnosis and how I am feeling. I know my thoughts and feelings will change everyday...they seem to change every hour of the day.

When Jerry and I were told that there was a problem with Hope's heart, we kind of thought 'no big can be fixed'. His sister and a few others have heart murmurs and we fully expected that is what the doctor would tell us after the fetal echocardiogram. It really shocked us and the news is not something either of us were prepared to hear.

Hypoplastic Left Heart Syndrome (HLHS) is one of the most complex cardiac defects seen in the newborn and remains probably the most challenging to manage of all congenital heart defects. It is one of a group of cardiac anomalies that can be grouped together under the description "single ventricle" defects.

Example of a normal heart

Example of Hypoplastic Left Heart Syndrome

1. Hypoplastic ascending aorta and aortic arch.
2. Hypoplastic left ventricle.
3. Large patent ductus arteriosus supplying the only source of blood flow to the body.
4. Atrial septal defect allowing blood returning from lungs to reach the single ventricle.

In a child with Hypoplastic Left Heart Syndrome, all of the structures on the left side of the heart (the side which receives oxygen-rich blood from the lungs and pumps it out to the body) are severely underdeveloped.

The mitral and aortic valves are either completely "atretic" (closed), or they are very small. The left ventricle itself is tiny, and the first part of the aorta is very small, often only a few millimeters in diameter.

This results in a situation where the left side of the heart is completely unable to support the circulation needed by the body's organs, though the right side of the heart (the side that delivers blood to the lungs) is typically normally developed.

Blood returning from the lungs to the left atrium must pass through an atrial septal defect (ASD) to the right side of the heart.

The right ventricle must then do a "double duty" of pumping blood both to the lungs (via the pulmonary artery) and out to the body (via a patent ductus arteriosus (PDA)). The patent ductus arteriosus, a normal structure in the fetus, is often the only pathway through which blood can reach the body from the heart. When the ductus arteriosus begins to close, as it typically does in the first days of life, the blood flow to the body will severely diminish resulting in dangerously low blood flow to vital organs and leading to shock. Without treatment, Hypoplastic Left Heart Syndrome is uniformly fatal, often within the first hours or days of life.

Equipped with the above information we were given the following options:

1. Terminate the pregnancy
2. Comfort care after birth - no medical intervention given and the baby will pass within a week
3. Heart transplant
4. Three open heart surgeries that are typically done in the 1st three years of life

The three-stage procedure is a palliative procedure (not a cure), as the child's circulation is made to work with only two of the heart's four chambers.

The first step is the Norwood procedure. In this procedure, the right ventricle is used to pump blood into the systemic circulation. Since the right ventricle is no longer directly pumping blood to the lungs, a shunt is required in order to pass deoxygenated blood through the lungs. Either the subclavian artery can be connected to the pulmonary circulation (Blalock-Taussig shunt), or a shunt is made directly from the right ventricle to the pulmonary circulation (Sano shunt). The narrow aorta is enlarged using a patch to improve bloodflow to the body.

During this time the baby may be medically fragile and have feeding problems because the heart is working very hard. There is a considerable degree of venous mixing in the right ventricle, leading to lower oxygenation saturations. In addition, the Blalock-Taussig shunt and the Sano shunt both expose the lungs to systemic arterial pressures, leading in the long term to pulmonary hypertension and eventually to heart failure.

The second stage, the bi-directional Glenn procedure or Hemi-Fontan (see also Kawashima procedure) relieves some of the above problems. In this operation, the superior vena cava is ligated from the heart and connected to the pulmonary circulation. At this time, the Blalock-Taussig or Sano shunt is taken down. At this point, the lungs are no longer exposed to systemic arterial pressures, but much lower venous pressures. Although venous blood from the upper half of the body is no longer mixing with oxygenated blood in the right ventricle, there is still venous mixing from the lower half of the body, leading to some degree of oxygen desaturation.

During this time the child may have improved quality of life as the heart does not have to work as hard.

The final procedure, the Fontan (Fontan procedure) completes the repair of the hypoplastic left heart. Although there are several variations, the functional effect is to redirect venous blood from the lower body (through the inferior vena cava) away from the right atrium to the pulmonary artery. Now, there should not be any mixing of oxygenated and deoxygenated blood in the right ventricle. The right ventricle performs the traditional job of the left, supplying the body with oxygenated blood, while the passive systemic venous pressure performs the traditional job of the right, passing deoxygenated blood to the lungs.

The Norwood Procedure is generally performed within a week of birth, the second stage at 3–6 months of age, and the Fontan at 18 months to four years of age. There are two types of Fontan: the Lateral Tunnel Fontan, and the Extracardiac Fontan. When the Fontan Procedure was first being done for children with HLHS, the only Fontan was the Lateral Tunnel Fontan. This requires actual cutting in the heart itself to create a "tunnel" by which the blood can travel passively to the lungs. Within the last decade, doctors have created an Extracardiac Fontan. This operation creates a tunnel outside the heart itself which reduces the chances of Fontan patients developing scar tissue on the heart which might later cause arrythmias.

So you can see that the decision we have to make is very scary and one that we will be contemplating for as long as possible. The major issue we are facing is the time we need to make a decision if terminating the pregnancy is something we are considering...and we are, so we have 2 weeks to decide.

I know there are a lot of people that would not be able to contemplate, let alone make a decision to terminate a pregnancy, but we have to talk to the cardiac surgeon and see if Hope is even stable enough to make it through the 1st surgery. She is also missing her left kidney and that makes it much harder for her recovery with open heart surgery.

I really hate thinking about our little girl and how much she may have to go through in her life and I spend the day wondering if it is 'fair' to her to put her through the pain and lifelong medications and more than likely the heart transplant she will need if she survives. I also have to consider Jerry and Paul and how their lives will be changed by having a sister that is in and our of the hospital, or they would feel if she passed away. It is a heart-breaking time for our family and we are devasted by the decision and the impact that decision will have on all of our lives. I cry all day and all night. I find myself not eating and definitely not able to sleep. I know it has only been one day since we found out, but a day can change your life forever.