Saturday, November 22, 2008

Before the blog Part I

Jacob's due date was January 21st. October 3rd, I went for an ultrasound at the hospital because our tech at our regular office could not get a clear visual of all 4 chambers of our "baby girl's" heart. I went alone because it was just to get a quick picture of the heart and that was it. I sat on the table with that jell on my belly and stared with amazement at the screens in front of me....the life that I was seeing on the screen...wow. I asked her to make sure it was a girl...she looked at me funny and said....those don't belong to a girl! I was very excited about officially finding out the sex. Then she told me about the cysts that were on his brain...we sat and stared at his hand movements to look for any other signs of other "disorders" but he moved everything fine. She too could not get the right picture of his heart. There was a bigger issue here. I was asked to wait in the waiting room while she called up the doctor to take a look at her finding. Jason was at home with the boys (he was getting ready for work and then my Dad was there to stay with the boys until I could get home) and so I called him and told him that he didn't have to worry about any father-daughter wedding day dances (which he was!)....I would get yet another mother-son dance. He said, "WhAt?!?!" and was very excited about our little boy. But then I told him the sex was not the focus. I told him that there was a reason they couldn't get the right picture of his heart....it was because his heart wasn't 'right'. He asked if I was ok, I was, I told him I would get the details and we would talk when he got home from work. I was brought back in the room. The tech called the high risk ob in to look at his heart, my world crashed. He was unofficially diagnosed with complex congenital heart disease. Here I was alone finding out that my worst fear had come true....at the time, an 'unhealthy' baby was my worst fear. The doctor spent some time with me. My trust in the Lord was very evident to him so when the option to terminate was brought up, it was phrased in such a way that he assumed my answer very respectfully and referred me to our baby boy's cardiologist. The tech and doctor left me in the room alone to set up the appointment and I wanted so badly to freak out....I could not believe I was living this (at the time) nightmare, I talked myself down, prayed, held it together and pushed forward totally relying on the Lord like never before. After the appointment, I got into me car, called my sister as I was driving...I realized this was a mistake as I totally broke down and sobbed for a moment but then had to get it together to drive. I did. I drove home just replaying in my mind all that had happened...when you are pregnant, you think about all the things that could happen but you never really thought they would....at least I didn't....I was shocked that it was all real. I got home and my dad was there with the boys. He asked if everything was ok. I just shook my head and with tear filled eyes I said, "No." I didn't know what to do. I remember sitting on the couch wanting to call Jason at work because here my sister knew, my dad knew but Jason didn't. But I didn't want to tell him over the phone while at work and it wouldn't change anything. So I waited. Jason came home that evening and I told him the news. I don't' remember much else of that night but we told the boys of the doctors findings. They were concerned for their baby brother. Because it was news to us that the baby was a boy after being a girl for 6 weeks, Joshua said, "We need to give him a name......I like Jacob." So I said, "I like that name...Jacob it is." This day marked the biggest day of my walk with the Lord second to salvation.....it was a freeing day.....freeing of all control.....it was the Lord's will.

October 5th, Jason and I met with the cardiologist. We went over all the details of Jacob's heart defects. We went through the surgeries that would be in his future. We were "strongly advised" to get an amnio. Jacob became a cardiac patient and surgical candidate with some of the greatest care I have ever witnessed. He had more eyes on him and and more doctors involved...they were all great and they all respected our decision to give Jacob to best possible care we could regardless of genetics. But we were presented with a dilemma. Without the amnio, they would have to wait 5 days after birth to get genetic testing back in order to do the surgery....this meant he had to be strong enough to survive those 5 days until testing came back. An amnio could not be done too late in the pregnancy because the cell reproduction they needed to test accurately needed to be taken prior to a certain date....we had a deadline to decide if we wanted it or not....could he wait those 5 days? We had a month to think about it.

In that month, I met with my new ob (Oh, she was the sweetest doctor...I think of her often as her heart was torn for us after the diagnosis). She went down the list of chromosomal defects linked to Jacob's symptoms...there were quite a few and we talked about characteristics in each one....T18 & T13 were the worst possible outcomes but there were so many others and without the amnio; he was treated as a normal baby with complex congenital heart disease. She offered the amnio, respectfully accepted my decline and then we took a look at Jacob on ultrasound. His cysts had become smaller as anticipated and he looked great aside from his heart. Again, we sat and watched his hands move, we looked at his sweet button nose to see any facial defects were present and he was cleared until next month. At our next visit, his cysts were gone and things looked ok. We had met our deadline to request the amnio and we declined. Our decision was greatly respected among all parties involved...to this day, I would not change this decision.

My appointments continued on a monthly basis but then Jacob's growth became of concern....he was very small and his body was measuring significantly small compared to his head and legs. December 23rd came and we were told to go to our appointment with our bags packed in case of an emergency delivery. I was torn up about the thought of him being so small, so weak and so early. I thought of spending Christmas in the hospital away from my 2 older ones at home. He was cleared again as he grew as he needed and we cleared the holiday ok.

December 28th I woke up at 6:00 am with contractions 5 minutes apart. Because we lived 45 minutes from the hospital, our doctor said that any signs of labor, get to the hospital because this baby had to be delivered in a controlled atmosphere with the right doctors....(I delivered Jonathan in 2 hours so they took this into account and they needed more time than that to get everything in place for Jacob.) They checked me in, told me to walk because I was in no way dilated. We walked ALL DAY. I had more doctors check on me.....it was crazy. My contractions were 3 minutes apart, nothing too bad. At 6 pm, they monitored me and saw the consistent contractions but since there was no progressing, they were going to release me. They left me on the monitor as the nurse went to get the papers together to let me go home. She came back with the papers for me to walk out the door and looked at the monitor which had tracked Jacob's heart beat and on multiple occasions while she was gone those last 15 minutes, he had an irregular heart beat showing great concern of distress at times. That got the release papers in the trash and us admitted. Jacob was under 36 weeks and they didn't want to induce unless they had to. Through the night, contractions got worse (I had to breath through some of them), they had me on an iv to hydrate me and they monitored us every moment. It was a long night....Jacob had everyone on their toes. He had 2 more major decelerations and we were warned at 6 a.m. that if he had one more, they were going to do a c-section. Well he heard that and within the hour, all contractions stopped and he was fine. They monitored him for another 2 hours and everything was as it should be.....except I was EXHAUSTED from laboring for 24 hours, peeing every 2 hours and not sleeping AT ALL! But I was still pregnant which was great.

The week of January 7th, I met with my ob and Jacob's cardiologist one last time before delivery and scheduled an induction (to keep things under control) January 14th and to schedule Jacob's open heart surgery for following week just in case he needed his surgery that soon. Jacob's conditions did not make him a candidate for a c-section....we could still go naturally as his complications were issues that would only effect him once he was breathing outside the womb. We were prepared for a few symptoms such as low circulation causing him to be blue....just things we needed to not be surprised by. We were all on the same page.

To be continued....

4 comments:

Staci said...

Thanks for beginning to share this story. Jacob will continue to live on through you, your family, and the many lives he has touched. God Bless you and I am looking forward to...as Paul Harvey would say..."the rest of the story".

Shannon said...

Wow! I just stumbled across your blog and now I'm very anxious to hear the story continue. I'm gonna check out your videos and I'll be back to read the rest of the story.

Carla Burlando said...

I have read your thoughts and feelings since Jacobs passing but thankyou for sharing the events surrounding his birth. My little guy was first diagnosed with a severe heart defect as well...and of course we later found out it was trisomy 18. We knew before he was born though. What continues to amaze me is how much different the treatment is for a baby with a diagnosed chromosomal issue than it is for a baby with just the defects. Its kind of sad that they just write them off so quickly. In my case they had written him off before he was even born.I was definately swimming up stream just continuing the pregnancy.

Randi said...

Hi,
Still here. I am thankful that you still post your thoughts and feelings here. I miss Jacob and think of him often. He has changed my life for the better; He has brought so many people closer to our God~!