Saturday, January 16, 2010

Update on Jacob- Warning its long!

We drove 8 hours to Philly on Thursday.
Had a full day of testing on Friday (7am to 4:30pm).
Drove back home on Saturday.
I am exhausted.

Jacob Update:
The day began with a ultrasound of Jacob's anatomy. He is 3 pounds already! He was so beautiful, we got some very good 4d ultrasound pictures (Will post later). According to his measurements he is going to be shorter like his daddy and Aidan. Looks like another Andy clone lol. Everything on his anatomy scan (other than the heart of course) was normal.

We had a heart echo after that and when it was done we met with the cardiologist. They were able to see his heart better this time and were able to see what was causing the restriction at the atrial septal defect. Jacob's heart is different than a normal heart with HLHS and now we know why. He has 2 small holes at the atrial septal defect instead of one large one. He also has another obstruction, there is a tissue wall that is in front of the holes and slowing down the blood. This tissue usually dissapears early on in development but his did not. The blood is still flowing around the wall but its causing a anerysmal bulge due to the backed up blood. The blood is flowing though and as long as it continues to stay the same he is still considered low risk for the atrial septum.

Diagnosis: HLHS with mitral and aortic astresia with a Anerysmal, mildly restrictive atrial septum

What this means for Jacob:
They still don't think he will need immediate intervention as long as it doesnt get more restricted. However its good that they found this. The surgeon now knows that he not only needs to remove the wall with the atrial septal defect but he also needs to remove this tissue. If they had not found this then the surgeon wouldnt have known to cut it out and they could have sealed him up. Later on he could have had issues breathing and they would have had to open him back up to find out why. So although it scares me that his heart has yet another problem, I feel blessed that they know about it ahead of time.

We also had a Fetal MRI. I am not clostrophobic however being put in a tube which is beeping and shaking like crazy is just not a pleasant experience. Jacob really did not like this test. He kicked harder and more than I ever felt him kick before.

We met with the OB staff:
They want me to relocate to Philadelphia on March 1st. They are going to be doing another echo/o2 test on March 5th. At that time they are going to set a definite date for the csection. Right now they are thinking it will be at 37 weeks, around March 15th... that's only 8 weeks away!

My 2 year old Aidan was born at 37 and a half weeks. They want to make sure I don't go into labor on my own. They need a lot of people there for his delivery and want to make sure they are ready. Jacob is measuring a week ahead so as long as the tests on March 5th show his lungs reacting well to the o2 and he is good weight they will do it at 37 weeks.

Tour of the Special Delivery Unit: My room, CICU, CCU
We were able to tour where Jacob and I will be staying. I saw babies recovering, it was really sad. I started to tear up but fought it back. It just made it so much more real for me. On average babies are in the Cardiac Intensive Care Unit (CICIU) for about 10 to 14 days. Then they move to the step down unit, the Cardiac Care Unit (CCU). The are there for about 4 or 5 days, it really depends on the baby and how they are eating. These babies tend to have a lot of feeding problems so the sooner they start feeding well the sooner they come home. On average the babies go home 2 to 4 weeks after surgery. He will have his own nurse and they are great there and will make sure we are prepared before taking him home.

The room I will be in is amazing, huge and has 2 pull out bed/couches for Andy and family to stay on if they want to stay with me. They said they try to pamper the moms because we don't think about ourselves. I didn't think about this but they said their moms tend to have a lot of swelling in legs/feet because unlike a normal csection mom who stays in bed and gets pleanty of rest, we are wanting to be with our babies and up all of the time. On that note I was happy to find out that I will have my csection at 8:30 in the morning and should be up and out of bed by that afternoon! I do want to spend as much time with Jacob as possible so I like that fact. I will be admitted to the hospital for 3 to 4 days after my csection.

Emotional status:
So Jacob has an amazing team, His atrial septal defect has not gotten worse, I should be happy right? Yet I feel so drained and worried. I think I have been so possitive for so long that I blocked out all of the fear for a while. Taking the tour and seeing the babies brought me down to reality and how scary his illness is. I believe in his doctors, I know they are the best but I am scared. His heart has so many problems and as much as I know he is a fighter I hate that he has to. I want so bad to help him but I am so helpless. Everyone says that I have done everything I can for him but why do I feel like its not enough. I pray God will take care of him, I pray he will sail through surgery and be able to live a great life. I also pray that I am strong enough to help him get through this. I see life in such a different light now. The little things that seemed so important just don't matter. The only thing that matters is that I do everything in my power to make my kids life as happy and amazing as I can.

I promise you Jacob I will love you as long as I can and I will be there every step of the way. I am so sorry this happened to you and that you have to fight so hard to live however I promise, mommy will do everything in her power to fight for you and to help you heal. I will always be your biggest supporter and no matter how scary it gets you will NEVER be alone.


  1. I've been where you are. In fact, it was just on September 2nd of last year when we went for our tours, ultrasounds, etc. But we've successfully made it through birth and the Norwood procedure and recovery. We're home, and our life is complete now that our son is with us. I know it's difficult to know there's nothing you yourself can do to "fix" Jacob's heart, but being there for him, holding him, loving him, providing for him, raising him, welcoming him into your family... those are the things you CAN do and he will love you forever for being there for him.

    You're so right about seeing life in a different light now. God opens our eyes when he blesses us with these precious heart babies. Just know that He will provide for you and keep His hands on your sweet son. And know that you're not alone -- there are lots of heart moms like me who will be walking this journey with you!

    God bless!

  2. Thank you so much! I have been following your blog as well. Reading blogs from other heart moms has helped me so much, more than I can say. It is what inspired me to write this blog for Jacob. I feel like we are all connected by our babies. Its an amazing support system.

    I know Jacob is a fighter and I know God is looking out for him. I will do everything I can to help him through this and to help spread awareness for all of our babies. It's the least I can do for my Jacob.

    Thank you again.