Thursday, December 31, 2009

Mother's Intuition

This morning on the way to work I remembered a dream I had right before I found out I was pregnant with Jacob. In the dream I was in a dark hospital and the nurses told me that there was something wrong with my baby and I had to abort. I told them that my baby was fine and there was no way I would do that. I told them I wanted a second opinion and I left.

I remember telling this dream to my friend Natalie a few days later when I found out I was pregnant. I told her that in the dream I kept seeing pink things so I just focused on that part and thought it meant I was not going to have a girl. I didn't focus on the part where they said there was a "Problem", didn't think much of it. Now looking back, that would have been when the heart was forming and when the heart defect would have occured. The heart is fully formed at 8 weeks. I was about 4 weeks along when I had the dream.

In the dream I knew in my heart my baby was fine and that there was no way I was going to let them take him from me, I was going to fight for him. I wonder if this was my mother's intuition preparing me for what was to come. I decided against termination in the dream and am so glad I decided against it in reality. They have come so far with this defect and I have to give Jacob his chance at life.

Amazing, maternal instinct.
Love you Jacob!

Saturday, December 19, 2009

Children's Hospital of Philadelphia

After learning of our sons diagnosis and spending a few horrible weeks feeling helpless we decided to pursue the surgical option and find the best hospital we could. I found that the top two hospitals for HLHS were Boston and Philadelphia. I have family in both area's!

I had them each review our heart echo's from Cincinnati and they both agreed with the diagnosis. After talking to them both we decided to go to Philadelphia. It is 8 hours away instead of 16 and my sister lives there so I could stay with her some of the time. Plus the nurses and doctors were amazing and I really like that they have a special delivery unit. I will be able to deliver there and be right down the hall from our baby. I have to have a c-section so the thought of being close really appealed to me.

On December 14th I went there for my first consultation. They did another heart echo and a maternal oxygenation test to see how his lungs would react to the oxygen in the blood. As usual our little guy was super hyper and moved around constantly. The ultra sound tech would get a great image and then he would throw his arm over his chest lol. He wore himself out though so he was sound asleep for the oxygenation test which gave them great pictures.

They told us that his atrial septal defect had not gotten any worse it was only mildly restrictive so as of right now they wouldnt need to do a heart cath immediately when he is born. This puts his odds of survival at 93% provided that doesnt get worse. His lungs reacted very well to the oxygen which was also great news! Go Jacob!

We also met with a social worker there and discussed how we were coping as what we should expect and lodging options. I know Jacob will be in great hands there. They have great statistics and perform about 100 of these operations a year. Jacob will be in the Cardiac Intensive Care Unit for the first few weeks. He will have his own nurse. I was happy to hear that only 20 percent of the babies need to come home with a feeding tube and their heart transplant rate after surgery is very low. They discussed the medications he will be on and some of what to expect once we are home. We will have to monitor his oxygen levels, weight gain and take him to the cardiologist every 2 weeks. He will need heart cath's prior to each subsequent surgery. Overall it was a very reassuring visit and I couldnt say enough about the doctors and how great they were.

I will be going back every 4 weeks to keep an eye on the atrial septum. They will do a heart echo and oxygenation test every time. Our next visit will be on January 15th. We have a full schedule planned. I will be meeting with the OB staff to discuss when I will be going up there to stay and what the birth plan will be, I will have a full obstetrical exam, a 2 hour anatomy scan, a heart echo, an oxygenation test and a fetal MRI. We will also meet with the cardiologists again and take a tour of the whole cardiac unit and hopefully the Ronald McDonald house so I can see where I will be staying while the baby is recovering.

I will write again after the 15th of January, until then please keep Jacob in your thoughts and prayers!

Jacob's Mommy

Friday, December 18, 2009

The Diagnosis

Every parent looks forward to the 20 week ultrasound when they can see their baby. We went for our 20 week ultrasound on November 18th, 2009... a day I won't ever forget. The only concern we had was whether or not he would cooperate and show us whether he was a boy or a girl. Little did we know that our lives were about to be turned upside down.

I remember lying there excited to find out that we were having another little boy. Then suddenly the mood changed when the ultrasound tech got very quiet and said there was a problem with the heart. I was in shock, not knowing if I heard her correctly. How we take for granted that everything would be ok. I wouldn't have even noticed there was something wrong with the heart but when she said those words I looked at the monitor and knew it was bad. I remembered being there 2 and a half years ago pregnant with my son and seeing his heart on that screen. Jacob's heart looked nothing like Aidan's did.

The ultrasound tech told me that she couldn't find the 4 chambers and she didn't know what it was but something was very wrong with the heart. She then told me the doctor was out of town and we would have to come back A WEEK LATER!

My husband and I left in tears, this was not the happy day we were so looking forward to. After talking with family and friends we decided I couldn't wait a week to find out what was wrong. My friend Natalie called another perinatal center and told them what happened. They called the place I had been the previous day and called me back to tell me the diagnosis that was suspected was Hypoplastic Left Heart Syndrome. My husband and I had googled the night after our ultrasound and that was our "Worst case scenario". It is 100% fatal without surgery. Pretty much the worst CHD Diagnosis possible. The new perinatal center called back 10 minutes later to say that it just so happened to be the day the Cardiologist from Cincinnati was teleconferencing in for heart echo's and they just had a cancellation.

My friend Natalie and I rushed down there and my husband met us. After another anatomy scan and a heart echo the cardiologist confirmed the diagnosis. He told us we had 3 options. We could terminate the pregnancy but I was running out of time and would have to do that within a week, we could carry to term and keep our baby boy comfortable as he passes or we could have him go through a series of 3 open heart surgeries... the first being at birth.

My husband and I were devastated. How do you choose whether you baby lives or dies. How are any of those choices "Good" options. Within one day we went from choosing blue or pink to life or death. They said they recommended doing an amnio to make sure there were no other birth defects. We agreed and they did that the same day. The cardiologist asked that we come to Cincinnati the following Tuesday for another heart echo done by their staff and a consultation. We agreed.

The next few days waiting for the trip to Cincinnati were very difficult. We got our amnio results back and they were Normal. A part of me wasn't as happy as I should of been because I knew that if there were other problems and he had no chance at a life then the decision would have been easier. I was in such a state of shock and confusion I just thought if this baby was not meant to live then I wished God would take it out of my hands. I prayed for an answer.

We went to Cincinnati where they told us he did have HLHS and also a restricted atrial septum and a blood clot in his left ventricle. The blood clot was not a concern but they were concerned about the atrial septum. The staff there was really great. They were so compassionate and understanding. I really appreciate that since it was such a difficult time for us.

After looking into our options I knew that terminating the pregnancy was not an option for me. If Jacob was not going to make it I was at least going to say goodbye to him and give him a proper burial. A week or two went by feeling hopeless and thinking I was going to loose my little boy. However once I started doing more research I found other parents of HLHS babies on facebook and read their stories of survival. Seeing these babies filled me with hope. The more I felt my little boy kick inside of me the more I knew I had to fight for him. I had to give him a chance. It was like Jacob was telling me that he was a fighter and that he wanted me to give him that chance.

I prayed for a clear decision and it came. Now the battle begins. The battle to save baby Jacob.