Tuesday December 1st 2015
We left Tyson's parents house as early as we could muster after a night of restless tossing and turning. We drove up to the University of Utah Hospital. Our directions were to go to the front desk and give them our name, our information had already been sent over so they would tell us where to go from there....... Well..... In a huge hospital like that one it's not enough to just go to the front desk. We were led ALL OVER that hospital. Back and forth we went, Tyson got me a wheelchair so I didn't have to walk and he pushed me through. I was crying and sobbing because I just wanted answers and nobody could even tell us where to go. After about an hour of walking around we found a Dr who knew where to lead us and he walked us right to the fetal heart monitoring area of the Primary Childrens unit. Finally, we were about to get some answers.
We went into a dark room with a machine that could do an echo of the baby's heart. It looked like an ultrasound machine but the image was so much more detailed we were in awe at the technology. The technician spent an hour scanning the different chambers of Bridget's heart, taking screen shots, monitoring heart rate and checking the rest of the body.
Dr. Pinto, our fetal heart specialist, came in to check on what was found. She did a few scans herself and reviewed the information the technician had gathered. We were then sent to a room with couches, tissues and magazines to "wait comfortably" for Dr Pinto to come explain things to us.
She came in and she was so kind. She was giggly and happy and this gave us hope right away. She took the time to explain to us the structure of the heart and how things work in a normal body. Then came the part where she told us what was going on with Bridget's heart.
In a normal heart there are two communication centers. One communicates with the brain and starts the heart pumping, this is in the top of the heart so the top two chambers begin pumping based on information from the brain. There is a second communication zone in the middle of the heart which tells the rest of the heart what to do. This sets the pace for the bottom of the heart.
yellow: secondary communication center)
yellow: secondary communication center)
Bridget has complete heart block. This means that somewhere between the first communication zone and the second the signal is being lost. So the bottom of the heart doesn't know how fast to pump. The top of her heart is pumping around a rate of 140 and the bottom of her heart is still at a rate around 60. This means that Bridget will need a pacemaker her whole life.
At this time we were unsure as to why the blockage happened. But I had had some bloodwork drawn the night before and when those test results returned we would know more about the why. What we were focusing on right at that moment was what we needed to do.
Dr. Pinto explained to us that Bridget is not in distress, her heart has adjusted to this slower heart rate and while in utero she would be safe as long as her heart stays stable. If her heart rate drops below 55 then we would need to deliver. She assured me that this was not something I had caused, it was not due to diet, it was not due to stress, this is just something that rarely happens to babies. She went on to tell us I could continue a mostly normal pregnancy, I would not be hospitalized unless the heart rate drops.
We were relieved to know it wasn't anything we had caused, and that no matter what caused it we would have a solution.
Bridget has damage to her communication center in her heart. There is a reason it is called "complete" heart block. This is because the damage is done, it is irreparable. It will not fix itself and there isn't a surgery that can repair the damage. What we can do is get her heart beating at a normal pace through a pacemaker. She will live a normal life, with a long life span, only needing to have adjustments and battery changes here and there.
For now, I go to the Dr two or three times a week to have Bridget's heart rate monitored. We have to see a specialist for this which is pricey but worth it for our little lady's life. I will go in every two weeks for an echo on her heart and we will monitor everything to make sure no further damage is being done.
I have been put on steroids to help with stopping any further damage and to help her lungs develop, they aren't proven to halt damage but they have been shown to help.
She might need the pacemaker right at birth. She might be able to wait 6 months before it is needed. All we know is she will need it and it will help her.
She won't likely make it to her due date. But we are going to keep her in there as long as possible.
We walked out, with a few answers and a little more hope.
Thursday December 3rd 2015
We had some tests, appointments and scans before Thursday but those had little information in them so we will hop forward.
We arrived at Murray Hospital. This is where I will have my scans done 2-3 times weekly. It is in the MFM unit and we trust these Drs already.
While waiting for the appointment we received a phone call with my blood test results. I have an auto immune disease. I have likely had this for a while but it hasn't shown any symptoms on me so far. We don't know which auto immune disease it is, but we do know it is one of them that carries the antibody SSA. This particular antibody has been known to attack the communication center of a fetal heart. There isn't a way to prevent it.
What happened to little Bridget's heart is due to the SSA antibody that is prevalent in my blood. Essentially something in my body attacked her body and caused the irreparable damage to the communication centers. While it is somewhat good to know the "why" it is REALLY hard to hear that my body hurt her body. It also comes with the news that any pregnancies I have in the future will have 20% chance at this same damage being done.
Right after that call I let Tyson know I was having trouble breathing. I started to have a panic attack. My name was called and we started to follow the nurse back to the room but in the hall I started to get really dizzy. I told the nurse and Tyson that I was going to pass out, sat down on the floor and then I was OUT.
The Dr came over and witnessed my pass out, during which I was convulsing, this worried the Dr that I was having a seizure and he sent me down to the ER.
In the ER I was put on an IV with some anti anxiety medication. I almost passed out again but didn't. Another Dr from the MFM area came down to the ER and did my scan from there. Baby Bridget was stable, happy and didn't even seem to notice the anxiety her momma was going through.
We stayed at the ER for a few hours under observation. They decided it was probably not a seizure and let me go home.
My next appointment is on Tuesday and we will continue to check in on our little bundle to make sure she is happy in there. We are trying to find what our new sense of "normal" is and I am doing my best to stay calm. We have a lot of family and friends around us that are taking amazing care of us. We are so blessed to live in an area where there are specialists in this area, where they are equipped to deliver a baby like mine. Baby Bridget is going to be taken care of. We just have to take it one day at a time.