Making the decision to have a child – it’s momentous. It is to decide forever to have your heart go walking around outside your body. ~ Elizabeth Stone

Friday, March 30, 2012

Sunday, March 25, 2012

Two Steps Forward, One Step Back

We hit our first set back a couple of days ago. The day they decided to move Elijah from CTICU to CV Acute, I thought his breathing was odd. It sounded labored and incredibly fast. I asked the nurse and doctor about it and everyone said it was normal newborn breathing. When we got to CV Acute, I kept hearing the "strider" as they call it and the quickness.  It seemed to be becoming worse. Over the next 24 hours, I kept asking everyone who came in to listen to his breathing and they continued to reassure me and tell me it was normal. I knew from doing my research that his breathing may be a little faster than typical babies, but this was heartbreaking. I was giving him his bottle and he was trying so hard to drink it, but he was struggling to breath at the same time. It was only filled with 10cc and it seemed to take all of his focus and energy to drink it. I panicked and didn't know how such a small, determined little baby could continue trying to eat when he could barely breath. This continued overnight and into his next feeding. My heart was breaking and I couldn't imagine forcing this on my little baby every time he needed to eat. By the time Dion got there the next day, I was beside myself. Thankfully, the charge nurse of the day shift finally listened to my concern. She was determined to get someone to listen to her.

The next thing I knew, she had called a doctor and had a nurse practitioner in the room listening to his breathing. The doctor came and they decided that indeed it wasn't normal newborn breathing and something must be wrong. They did xrays and discovered that he had fluid in his lungs and this was causing the labored breathing. I was so relieved that they finally did something to help him. They stopped all feedings and put him on even more diuretics to help clear the excess fluids. They kept his oxygen the same and allowed him to rest.  On top of that, his white blood count was trending upward and they suspected an infection.  They already had him on an antibiotic and they added another. The good news was that he had yet to have a fever. They then decided that they needed to remove the central line (the IV to his heart) because it could be the source of the infection.

The good news in all of this is that the doctors came in today and said that his xray looked much better. His breathing, although still quick, was greatly improved, and his white count was finally starting to lower. They let me give him a bottle today for the first time in several days.  The nurse filled it with 40cc of fortified breast milk and told me I had 15 minutes max to get him to eat. What was left, she would feed him through his ng tube. She explained that after 15 minutes, he will actually be using more energy than he is getting from the milk and they want to prevent that. He ate 31cc and probably would have eaten more, but I couldn't get him to burp (its very scary to try to burp a baby who has recently had his chest cracked open).  I was a little disappointed that I couldn't get him to drink it all. However, the nurse came in and was thrilled. She said that typically, hypoplasts will only eat about 6cc on their first whole feeding. That little boy has to be one of the most determined, strongest people I have ever known.

All in all he is doing well. A heart doctor came in this morning and said they were very pleased with his progress. He explained that these babies typically spend 3 weeks or so in the CTICU and then another few weeks in the CV Acute. On average, after the Norwood (his surgery), they spend 35 days in the hospital. Its just hard when its your baby. It's only been a week and a half since his surgery, but when it's your baby it feels like forever. When it's your family that is separated, it seems like a lifetime. This is some hard stuff. I think that little baby may be the strongest of us all.

Wednesday, March 21, 2012

Wow... Wow... Wow

Wow what a week. The pictures to the right document the past week in chronological order (the top pic is the most recent). It has been such a tough week, but Elijah has been quite the fighter and is doing really well. He was born last Tuesday. They took him as soon as he was born and assessed him. I was able to hold him for a minute before he was taken to the NICU to wait for transport to CHLA. Dion went with him to the NICU while they finished with me and I was moved to recovery. Those are some of the most painful moments of my life. Dion was wonderful and managed both me and Elijah, going back and forth all day. The hospital was great and took me to the NICU on the way to my room and I was able to see him again. The transport team also brought him to my room before the took him to CHLA. It took four people, plus Dion and an ambulance to get him to CHLA. All for a little six pound baby.

Once he was admitted, they waited two days before doing the surgery. During that time, we were able to hold him with the help of a nurse. There were so, so many people in and out of the room.  CHLA is an amazing place with wonderful people working there. The nurses and doctors have to be some of the most caring people I have ever met. Not only have they cared about Elijah and his well being, but they care about us as well. There is a nurse assigned to Elijah at all times and he/she stays in the room with us and Elijah. Dion and I worked out a schedule and have been taking turns spending the night at the hospital. It has been hard, but we are doing the best we can.

The day they took him for surgery was heart breaking.  We had so much support at the hospital. I wished I had seen more pictures of babies directly after the surgery. Nothing prepared me for the sight of my little baby hooked up to so many wires you can't count, with chest tubes attached draining blood from him, a foley catheter, and a breathing tube. Not to mention the worst part, the open chest. It was shocking to say the least.

He did well and progressed just as he should. One night his left lung collapsed and they had to manually get him to breath again. But man that little boy is a fighter. The doctors have been slowly weaning him off of all his medicines and they closed his chest on day 3. The chest tubes came out Monday and they were able to take his breathing tube out yesterday. They still have him on oxygen but they have been slowly lowering the levels over night. They also started to introduce pedialyte through his NG tube over last night. 

Dion spent the night last night and they were able to move Elijah from the CTICU to the Acute unit this morning.  This is very exciting. Dion is supposed to be able to try feeding him with a bottle this morning. Dion and I have been  pacifier nazis trying to get Elijah to suck again, so hopefully he will be able to get the hang of the bottle fairly quickly.

Noah has had a rough week. The first several days were so crazy and we didn't really get to see him much. He has been a trooper though. We have had so much family around to love on him and help take care of him. Once things settled down, we have been able to make sure he sees at least one of us everyday. But he still calls for mommy and daddy when we aren't around. He came down with a little cold and we are being very cautious and hoping that none of us catch it as well. We have been repeatedly warned that Elijah can't get sick.

I suppose this has been a long enough update :). I will try to be more consistent about getting information on here as it happens. We have been so very, very tired it has been hard to think about anything but the absolute necessary. As always, we ask that you keep Elijah and our family in your thoughts and prayers.

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?

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.

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.