Monday, May 28, 2012
Admitted last night...
Elijah was admitted last night. He had stopped eating and was having very scary choking episodes. They did an echo last night and his heart function was good. They think he has a virus and they are running tests. He is still not eating like normal and they have him on oxygen because he is having trouble breathing. One cardiologist explained that his heart and body are functioning at max capacity as it is. He has no reserves to deal with illness. Hopefully he will won't be here for long and we will take our baby home. Please keep him and our family in your thoughts and prayers.
Tuesday, May 8, 2012
Dr. Appointments
Today was a very busy day for a very little boy. Elijah had an echo and x-ray done first, followed by an appointment with the cardiologist, and then an appointment with the doctors from the NICU. The good news is that his echo looked good. They were a little concerned about some narrowing of the aortic arch. I guess this is fairly typical but they want to keep an eye on it and follow up next time. The x-ray was clean and his lungs looked good.
There is some concern with his weight. He has almost fallen off the growth chart. He is barely hanging on at 0%, although his head is growing well. He weighs 8lbs 4oz at 8 weeks old. Eating has been a challenge and is the most stressful part of my day. He gets stiff and arches his back. This is on a good day. On a bad day he does this plus cries during the feeding and typically pukes on me. Throwing up is par for the course at this point. All of this sounds bad, but in comparison to a few weeks ago, it's actually an improvement.
We shared all of this with the team. Obviously he doesn't like his formula so we are going to try something else. They also think that he has reflux. He is already on the maximum dosage of zantac so they are thinking about changing the medication. However, in order to change the medication, we need to be admitted again. Of course I want to do whatever is best for Elijah, but the idea of being admitted again is not something I like to think about. Everyone agrees that if we can find a formula that Elijah really likes, he will eat more and then he is likely to gain more weight. However, if he has reflux, then it is painful for him to eat and that also needs to be addressed.
I was telling Dion today that it would be so nice if feeding Elijah was that peaceful bonding experience that I remember with Noah. Instead, feeding time is stressful and nerve racking. Hopefully we will find answers soon.
There is some concern with his weight. He has almost fallen off the growth chart. He is barely hanging on at 0%, although his head is growing well. He weighs 8lbs 4oz at 8 weeks old. Eating has been a challenge and is the most stressful part of my day. He gets stiff and arches his back. This is on a good day. On a bad day he does this plus cries during the feeding and typically pukes on me. Throwing up is par for the course at this point. All of this sounds bad, but in comparison to a few weeks ago, it's actually an improvement.
We shared all of this with the team. Obviously he doesn't like his formula so we are going to try something else. They also think that he has reflux. He is already on the maximum dosage of zantac so they are thinking about changing the medication. However, in order to change the medication, we need to be admitted again. Of course I want to do whatever is best for Elijah, but the idea of being admitted again is not something I like to think about. Everyone agrees that if we can find a formula that Elijah really likes, he will eat more and then he is likely to gain more weight. However, if he has reflux, then it is painful for him to eat and that also needs to be addressed.
I was telling Dion today that it would be so nice if feeding Elijah was that peaceful bonding experience that I remember with Noah. Instead, feeding time is stressful and nerve racking. Hopefully we will find answers soon.
Monday, April 16, 2012
Life at Home...
It's been a while since I have last updated. Adjusting to not only having another child, but a child with some special needs has been quite the experience. Elijah is doing well. Noah loves his little brother although he has struggled with sharing his parents' attention. We decided to keep Noah in school in order to keep his routine and have interaction with other kids. When he gets home we have to wash him down and change his clothing. Elijah isn't allowed to be around kids or people who are ill. Basically we are hermits. He can go outside, but not in enclosed spaces where people can cough or sneeze on him. We have become quite the germ freaks. Hopefully this will be enough to keep the germs from getting to Elijah.
They told us when we were discharged that the toughest part now will be his feeding. How true. When they sent us home, they had us fortify his breastmilk to 27 calories (formula and breastmilk is typically 20 calories). They gave us two cans of this special formula, progestimil, and sent us on our way. They warned us that if he refuses two feeds, throws up twice, or has too many diapers, we have to go to the emergency room. The fear is that he will become dehydrated and that the shunt in his heart will clot. This would be very, very bad. It's also important that he gain enough weight. These heart babies often have a hard time gaining weight. They don't typically eat well and their bodies use more calories because they work harder just to stay alive.
Needless to say, we are a little high strung about his eating. He had been doing really well eating at the hospital, although they weren't really happy with his weight gain. However, once we got home, he started throwing up every day and struggling to eat. My gut told me it was the fortification causing this. However, it could have also been caused just by the fact that he is a heart baby. We just didn't know what to do. He would arch his back and choke on the milk. Feeding him became so stressful. We went to CHLA last week and they weighed him and they weren't particularly pleased with his weight gain and they blamed the feeding issues on reflux and they increased his meds. Again, my gut said this was not the issue, but I'm not a doctor so what do I know.
Finally last week it got bad and overnight (why does it always have to happen at night?) Elijah started to all out refuse to eat. He cried, spit out his milk, and refused his bottle all together. All I could think about was Elijah getting dehydrated and the shunt clotting off. Finally I started to breastfeed him and give him plain breastmilk (the doctors told me I was not allowed to breastfeed because they couldn't monitor the amount he got and because he burned too many calories feeding at the breast). I just didn't know what else to do.
I contacted CHLA the next day and they were able to set us up with a dietician. At this appointment I learned all about the different formulas and they tested my breastmilk. I guess the formula he was on is really broken down and easy to digest but it also tastes awful. Who knew a four week old would have such an opinion. In the end, it was decided that Elijah doesn't need any fortification because he eats so much. I knew it! Not only that, but he had gained even more weight! Victory!
Other than feeding, Elijah has done really well. His echo was good, the x-ray came out clean, and the ekg was normal. They will continue to monitor him over then next couple of months. He will have his next surgery between 4 and 6 months. It will depend on his weight and oxygen levels. It's scary because his oxygen levels will drop. It's only a matter of time and this drop will tell them he needs the next surgery. We measure his levels and weigh him every day. Once he has his next surgery, he will be much more stable.
So until then we will just keep on monitoring him, going to his doctors appointments, and giving him lots of love. I won't lie, it's been a challenge. But this little guy is worth it!
They told us when we were discharged that the toughest part now will be his feeding. How true. When they sent us home, they had us fortify his breastmilk to 27 calories (formula and breastmilk is typically 20 calories). They gave us two cans of this special formula, progestimil, and sent us on our way. They warned us that if he refuses two feeds, throws up twice, or has too many diapers, we have to go to the emergency room. The fear is that he will become dehydrated and that the shunt in his heart will clot. This would be very, very bad. It's also important that he gain enough weight. These heart babies often have a hard time gaining weight. They don't typically eat well and their bodies use more calories because they work harder just to stay alive.
Needless to say, we are a little high strung about his eating. He had been doing really well eating at the hospital, although they weren't really happy with his weight gain. However, once we got home, he started throwing up every day and struggling to eat. My gut told me it was the fortification causing this. However, it could have also been caused just by the fact that he is a heart baby. We just didn't know what to do. He would arch his back and choke on the milk. Feeding him became so stressful. We went to CHLA last week and they weighed him and they weren't particularly pleased with his weight gain and they blamed the feeding issues on reflux and they increased his meds. Again, my gut said this was not the issue, but I'm not a doctor so what do I know.
Finally last week it got bad and overnight (why does it always have to happen at night?) Elijah started to all out refuse to eat. He cried, spit out his milk, and refused his bottle all together. All I could think about was Elijah getting dehydrated and the shunt clotting off. Finally I started to breastfeed him and give him plain breastmilk (the doctors told me I was not allowed to breastfeed because they couldn't monitor the amount he got and because he burned too many calories feeding at the breast). I just didn't know what else to do.
I contacted CHLA the next day and they were able to set us up with a dietician. At this appointment I learned all about the different formulas and they tested my breastmilk. I guess the formula he was on is really broken down and easy to digest but it also tastes awful. Who knew a four week old would have such an opinion. In the end, it was decided that Elijah doesn't need any fortification because he eats so much. I knew it! Not only that, but he had gained even more weight! Victory!
Other than feeding, Elijah has done really well. His echo was good, the x-ray came out clean, and the ekg was normal. They will continue to monitor him over then next couple of months. He will have his next surgery between 4 and 6 months. It will depend on his weight and oxygen levels. It's scary because his oxygen levels will drop. It's only a matter of time and this drop will tell them he needs the next surgery. We measure his levels and weigh him every day. Once he has his next surgery, he will be much more stable.
So until then we will just keep on monitoring him, going to his doctors appointments, and giving him lots of love. I won't lie, it's been a challenge. But this little guy is worth it!
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.
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.
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.
Subscribe to:
Posts (Atom)