Wednesday, March 14, 2012
Happy Birthday
Elijah Carter Coley was born yesterday, March 13, 2012, at 6:00 am. He was 6lbs even and 18 inches long. Elijah scored 9/9 on his apgar score and was strong and stable. He is now at CHLA awaiting his first open heart surgery that is scheduled for tomorrow morning. The doctors have asked that friends and family donate blood because he will need it during his surgery. Please keep him and our family in your thoughts and prayers. I will update later with pictures once I get to a computer.
Friday, March 9, 2012
Nearing the Finish Line
Yesterday was a tough one. I had my typical day of doctor's visits. However, after I got there, I am informed that my OB, the woman who was going to deliver Elijah, no longer works for the office and has been replaced by two new doctors. How does that happen in one week time? I try not to panic, but I had finally adjusted to this doctor and we had worked out a plan and now this.
I am first given an ultrasound and seen by the specialist. He said things look good as far as Elijah's growth and his heart is beating well. However, I mention that CHLA had sent him the MRI results and he proceeded to disappear for quite a while. Again with the rising panic. I have come to discover that it is never a good thing when a test takes an abnormally long time or a doctor disappears for an extended period. When he came back, he had my nurse in tow and was trying to explain grey and white matter of the brain. He said that they found some abnormal signals in Elijah's white matter, but he really couldn't elaborate. The most he could say is that we shouldn't stress about this because it probably doesn't mean anything. He went on to say that this is why they do the MRI. They want to know the abnormality before they perform the surgery so that they know the abnormality isn't a result of the surgery. Hmmmmmm okaaaaaaay. He then proceeded to tell me that the easy part is about to end (pregnancy) and the tough part is about to begin. Yeah, so that is comforting.
After this confusing experience, I am taken to another room to lay on a bed for the next 30 minutes while they monitor Elijah's heartbeat and make sure I am not having any contractions. He was a champ and his heart beat really well. I met the new OB who seemed nice enough and we discussed the upcoming induction. My body seems to already be preparing for birth so she thinks they may just start with pitocin. And now for the real kicker, they scheduled my induction for this MONDAY! Wow I was not prepared for that. It's not that much earlier than what we had originally thought, but it was a curveball. The one thing I thought I could control and I thought I had a plan for was this birth and now I had to start over and plan again. Talk about panic. Of course everything will work out, I just need to release the need to control things. Nothing in this can be controlled. Why can't I just accept that?
I am first given an ultrasound and seen by the specialist. He said things look good as far as Elijah's growth and his heart is beating well. However, I mention that CHLA had sent him the MRI results and he proceeded to disappear for quite a while. Again with the rising panic. I have come to discover that it is never a good thing when a test takes an abnormally long time or a doctor disappears for an extended period. When he came back, he had my nurse in tow and was trying to explain grey and white matter of the brain. He said that they found some abnormal signals in Elijah's white matter, but he really couldn't elaborate. The most he could say is that we shouldn't stress about this because it probably doesn't mean anything. He went on to say that this is why they do the MRI. They want to know the abnormality before they perform the surgery so that they know the abnormality isn't a result of the surgery. Hmmmmmm okaaaaaaay. He then proceeded to tell me that the easy part is about to end (pregnancy) and the tough part is about to begin. Yeah, so that is comforting.
After this confusing experience, I am taken to another room to lay on a bed for the next 30 minutes while they monitor Elijah's heartbeat and make sure I am not having any contractions. He was a champ and his heart beat really well. I met the new OB who seemed nice enough and we discussed the upcoming induction. My body seems to already be preparing for birth so she thinks they may just start with pitocin. And now for the real kicker, they scheduled my induction for this MONDAY! Wow I was not prepared for that. It's not that much earlier than what we had originally thought, but it was a curveball. The one thing I thought I could control and I thought I had a plan for was this birth and now I had to start over and plan again. Talk about panic. Of course everything will work out, I just need to release the need to control things. Nothing in this can be controlled. Why can't I just accept that?
Wednesday, March 7, 2012
MRI
So... I never thought of myself as being claustrophobic. However, I've never really been in a tight space before today. Wow the MRI machine couldn't get much tighter. First things first, they scheduled my appointment for 6am at Children's Hospital. Come to find out, they schedule fetal procedures for the first appointment of the day. The offices weren't even open when I got there. They finally took me back at 6:30am, got me changed, gave me a questionnaire, and put all my things in a locker. My nerves were wrought. I had no idea what to expect, except what I know from the TV show House, and we all know how reliable TV shows are.
The technician was very kind and took me into the MRI room and got me settled on the sliding board/bed thingy. I was relieved to find out that they were going to show me a movie during the procedure to help distract me only to discover, after several tries, that the machine wasn't working. Nice. To put a long story short, I am not a fan of the MRI machine. To be pregnant, super uncomfortable, having back pain, all while being shoved into a tube was not how I would have liked to spend my morning. I found myself having to use the breathing I used in yoga and while working out in order to stay calm. I am not one to panic, but I will tell you after an hour of having to hold completely still all the while an incredibly loud machine keeps making systematic buzzing noises and filling the tube with heat, I must say I had to stifle the panic.
By the time I was done, I was ready to run out of that place. However, I would say the most sobering part of the morning had to be when I got up and needed to find a place to change. When I went into the MRI room, there were no other patients. When I came out, the place was filled with small children, some playing with toys, other crying from fear, all waiting for their tests. It just brought me back to reality. No matter how much I disliked the MRI, I was an adult and could rationalize and calm myself. These poor little kids were scared, sick, and going through so much more. Quite sobering if you ask me.
The technician was very kind and took me into the MRI room and got me settled on the sliding board/bed thingy. I was relieved to find out that they were going to show me a movie during the procedure to help distract me only to discover, after several tries, that the machine wasn't working. Nice. To put a long story short, I am not a fan of the MRI machine. To be pregnant, super uncomfortable, having back pain, all while being shoved into a tube was not how I would have liked to spend my morning. I found myself having to use the breathing I used in yoga and while working out in order to stay calm. I am not one to panic, but I will tell you after an hour of having to hold completely still all the while an incredibly loud machine keeps making systematic buzzing noises and filling the tube with heat, I must say I had to stifle the panic.
By the time I was done, I was ready to run out of that place. However, I would say the most sobering part of the morning had to be when I got up and needed to find a place to change. When I went into the MRI room, there were no other patients. When I came out, the place was filled with small children, some playing with toys, other crying from fear, all waiting for their tests. It just brought me back to reality. No matter how much I disliked the MRI, I was an adult and could rationalize and calm myself. These poor little kids were scared, sick, and going through so much more. Quite sobering if you ask me.
Saturday, March 3, 2012
37 Weeks...
Thursday was a whirlwind of a day. I met with my OB who also did my ultrasound. Everything looked good as far as Elijah's growth, fluids, and heart rate. At my next appointment she will check me more thoroughly and she will set our official induction date. She did make a point to let me know that he could come at any time now. However, we are all hoping that he waits until induction. Although induction is frightening, it will set Elijah up for the best possible outcome.
I then met with a neonatologist. She will be the doctor in the delivery room who will be there to take charge of Elijah's care. She said much of what we already knew. She encouraged us, and anyone who would be a constant in Elijah's life, to get the whooping cough and chicken pox vaccine. I hadn't really thought of that. She also said that if Elijah is born stable, she will allow me to hold him for a couple of minutes before taking him to the NICU. The was new news. Up until this point, I had been told that they would show him to me but now let me hold him. I have really struggled with this. One of the most significant moments in my life was when I delivered Noah and they placed him on my chest. This was also the moment I bonded with Noah. I had yet to resolve myself to the fact that I would not have this moment with Elijah.
After she takes him to the NICU, they will set him up on a central line that will deliver the medicine that will keep him alive and stable for a few days to allow his pressures to drop. Ideally they would like to perform his first open heart surgery a few days later. We will be able to stay will him and hold him while he is in the NICU and the CTICU.
After this, we met with two cardiologists who performed our last fetal echo. It was a little harder to see all of the structures of Elijah's heart because he has gotten bigger and because his bones have hardened. The diagnosis has not changed and continues to be HLHS. This was the first time I was actually able to see what the doctor was talking about. The left side of his heart is virtually nonexistent. He then sat with us and explained the function of the heart. He was very kind and very patient. Both of the doctors seem to think that for what it is, Elijah is looking really good. He looks to be a great candidate for the Norwood procedure and he will probably receive the Shano Shunt during the surgery. He said to plan on around a two week stay in the CTICU and then two more weeks in the step down unit. The average stay is a month but it could be less or more depending how how things go. He asked if I had gotten an MRI yet. Because of insurance problems, I hadn't. However, I now have one scheduled for next week. Hopefully we will get the results in time. All in all, it seemed like an encouraging day. The doctors were all positive and incredibly kind.
I then met with a neonatologist. She will be the doctor in the delivery room who will be there to take charge of Elijah's care. She said much of what we already knew. She encouraged us, and anyone who would be a constant in Elijah's life, to get the whooping cough and chicken pox vaccine. I hadn't really thought of that. She also said that if Elijah is born stable, she will allow me to hold him for a couple of minutes before taking him to the NICU. The was new news. Up until this point, I had been told that they would show him to me but now let me hold him. I have really struggled with this. One of the most significant moments in my life was when I delivered Noah and they placed him on my chest. This was also the moment I bonded with Noah. I had yet to resolve myself to the fact that I would not have this moment with Elijah.
After she takes him to the NICU, they will set him up on a central line that will deliver the medicine that will keep him alive and stable for a few days to allow his pressures to drop. Ideally they would like to perform his first open heart surgery a few days later. We will be able to stay will him and hold him while he is in the NICU and the CTICU.
After this, we met with two cardiologists who performed our last fetal echo. It was a little harder to see all of the structures of Elijah's heart because he has gotten bigger and because his bones have hardened. The diagnosis has not changed and continues to be HLHS. This was the first time I was actually able to see what the doctor was talking about. The left side of his heart is virtually nonexistent. He then sat with us and explained the function of the heart. He was very kind and very patient. Both of the doctors seem to think that for what it is, Elijah is looking really good. He looks to be a great candidate for the Norwood procedure and he will probably receive the Shano Shunt during the surgery. He said to plan on around a two week stay in the CTICU and then two more weeks in the step down unit. The average stay is a month but it could be less or more depending how how things go. He asked if I had gotten an MRI yet. Because of insurance problems, I hadn't. However, I now have one scheduled for next week. Hopefully we will get the results in time. All in all, it seemed like an encouraging day. The doctors were all positive and incredibly kind.
Friday, February 24, 2012
36 weeks...
There isn't much new to report. As the doctor on Thursday said, we are just counting down until the induction date. Baby Elijah is continuing to grow and it looks like he weights 5lbs 12 oz which is a good size for his gestational age. I sat down with our nurse and we discussed some of what would happen when he is born. Because he is a single ventrical baby, they will most likely transfer him to CHLA very quickly. I will have to pump and CHLA will store the milk for when he can finally eat.
There are so many unknowns. After he has his surgery, his chest will be left open and he will be intubated. They can't tell me how long either will continue, it all depends on how he heals and tolerates everything. She said it could take few weeks or it could take a month. During that time he will be sedated and pain free. At least that is comforting. We will meet with the neonatal doctors next week to discuss their plan for him. They will be the team of doctors that will be in the delivery room to take care of Elijah immediately after birth. We are still waiting for the insurance to grant us the MRI and the final echo. I have no idea why they are stalling. Hopefully it will be approved soon and we can move forward. The more information they have now, the better and quicker they can treat Elijah later.
There are so many unknowns. After he has his surgery, his chest will be left open and he will be intubated. They can't tell me how long either will continue, it all depends on how he heals and tolerates everything. She said it could take few weeks or it could take a month. During that time he will be sedated and pain free. At least that is comforting. We will meet with the neonatal doctors next week to discuss their plan for him. They will be the team of doctors that will be in the delivery room to take care of Elijah immediately after birth. We are still waiting for the insurance to grant us the MRI and the final echo. I have no idea why they are stalling. Hopefully it will be approved soon and we can move forward. The more information they have now, the better and quicker they can treat Elijah later.
Sunday, February 12, 2012
Here we go!
We finally had our first appointments with the USC Fetal and Maternal Health Institute on Thursday. It was a very, very long day. We had an incredibly long wait and had to see two different doctors. All in all, things are looking good. Elijah is growing just as he should and we are now looking at an induction date of March 14th to deliver on March 15th. I believe that they will then schedule his surgery for the following Monday. It's all starting to become very real and scary. Dion has faith that everything will work out and things are going to fall into place. I have always been a positive person but I am really struggling with this one. I am petrified that things are not going to go well. I suppose we all just have to live in the moment and not worry about things we can't control. I have to go to weekly doctors appointments and see several doctors each time. They want me to have an MRI so that they can look at baby Elijah's brain. They said that this is standard with heart babies but I can't help but worry about what it could possibly mean. Again, I need to live in the moment and not in the possibilities.
Thursday, February 2, 2012
33 Weeks and Counting
So after a very long fight with our insurance company, we finally have appointments set up for next week with CHLA Fetal and Maternal Health for all of my doctor appointments. This has been such a trying time. I now understand why people get frustrated with insurance companies.
I am nervous to find out how Elijah is doing and if he is gaining enough weight. Hopefully, we will be able to schedule a tentative induction date at that appointment. As March gets closer, I find myself getting more emotional. The thought of not even getting to hold him, having him whisked away to the NICU, and possibly not seeing him for days is terrifying. The idea of your tiny little baby going in for open heart surgery is mind numbing to say the least. I am just scared and worried. I fear for Noah and all of the uncertainty this will all bring. I can't imagine the emotions that he will feel when his world gets turned upside down. There is just so much uncertainty and I struggle to find peace in the unknown.
I am nervous to find out how Elijah is doing and if he is gaining enough weight. Hopefully, we will be able to schedule a tentative induction date at that appointment. As March gets closer, I find myself getting more emotional. The thought of not even getting to hold him, having him whisked away to the NICU, and possibly not seeing him for days is terrifying. The idea of your tiny little baby going in for open heart surgery is mind numbing to say the least. I am just scared and worried. I fear for Noah and all of the uncertainty this will all bring. I can't imagine the emotions that he will feel when his world gets turned upside down. There is just so much uncertainty and I struggle to find peace in the unknown.
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