It's no secret that every appointment through our pregnancy was difficult as it always ended with not so great news. Since Emerson has arrived, he has been thriving! And we are so grateful for that. But I still haven't been able to let go of the nervousness of appointments for Emerson. My stomach still gets in tiny knots as I wait to hear results. Are things the same? Better? Worse?
Yesterday was no different. We had our first appointment with Emerson's cardiologist and my nerves were on edge. But after a long three hours, Im happy to say that we received the best news yet! Emerson's heart defect isn't as complex as originally diagnosed! Small news that is so big for us!
Our appointment was originally scheduled for next friday, the 25th. I was a little concerned since Emerson was discharged from the hospital on October 2nd, 23 days from his discharge is a long time to wait. We were suppose to try to see the cardiologist within a week of his discharge but the 25th was the soonest appointment available. I voiced my concerns to our pediatrician, and while she thought is heart sounded good she said she would make a call to Detroit Children's Hospital to see if she can get him in sooner. We received a phone call about 10 minutes after leaving her office and it was our cardiologist moving our appointment up to the 18th. Thank you Dr. Earles!
The morning of the appointment was a little hectic, driving from Lake Orion to Detroit during rush hour can do that! And a uncomfortable baby up all night had me dragging a little bit. But our punctual daddy got us there with 15 minutes to spare ;) As we sat in the waiting room, all kinds of thoughts were going through my head. I just tried to let them go out of my mind as fast as they came in. We had an echocardiogram at the hospital a few days after Emerson was born, and we video conferenced with Children's Hospital, so we have the facts on his heart condition. But theres was still this little part of me that was worried that maybe something was missed.
We got called back and first they took Emerson's vitals. Emerson was nice and cozy, so was not a happy camper when I had to undress him to get his weight. Thankfully we brought a warm, fleece blanket to cuddle him in when he wasn't being examined. Weight was up to 4lbs 10oz! Almost 2lbs gained since birth :)
First up was an EKG. The nurse let us keep Emerson in the blanket to keep him warm. But the minute we set him on the table he was so upset. She started to put the leads on him, and it was seriously like 20 of them! He's so small they could barely fit on him. I think every inch of him was covered. The EKG was very short, probably like 2 minutes. Weird how fast that was. She tried to take the leads off quickly, but there was so many there wasnt anything quick about it. And in that short time they were stuck pretty good to his skin. I tried to keep him preoccupied so he wouldnt start crying as his sensitive skin was tugged at as she took all the leads off. Thank goodness for the pacifier, works every time!
The echocardiogram was next. We had the same ultrasound tech, Maria, that did our fetal echocardiograms, always nice to have some familiarity. They set up this cute little baby sized bed out of blankets on top of the exam table. Emerson sunk into it, and they snuggled him with more blankets to keep him warm. I wondered how he would react because he was a little difficult at the echo in the hospital. But their little secret was tucking his arms in one of the blankets. He loves his arms out so not sure how he would like that. And he was a little fussy, but once he had his pacifier he just sucked away, and eventually ended up falling asleep. It seemed like they were taking pictures of his heart FOREVER. I looked over at Grant and he looked nervous has he rested his face into his hands. I felt the same way. After about 75 pictures, the Maria said she was going to go check with the doctor to see if any more pictures were needed.
Those few minutes felt even longer. Grant looked at me and I could see the sadness in his eyes. He said its so hard to look at pictures, you can see how hard his heart is struggling. I dont know whats harder, dealing with my own emotions or seeing Grant's emotions during such a vulnerable time. Only 5 weeks in and we are experiencing those raw emotions of not being able to help your baby. Its out of our hands, and that is so hard. A doctor came in and told us she was part of the cardiologist team. She was going to take a few more pictures. She was also pregnant, so we talked a little bit about my pregnancy, where I delivered, Emersons birth, etc. She is delivering at Henry Ford West Bloomfield to, so I told her she is in great hands :) She took probably another 25 pictures and said Maria would be back in to take Emerson's leads off. Maria cleaned off the gel from Emerson and we were headed back to our exam room.
First we had a cardiologist fellow come see us. We went over family history, Emerson's history, what we our prenatal diagnosis was, and than she examined him. After that the fellow came back in with our cardiologist, Dr. Somerfield. We had her for our very first appointment where she delivered the heart defect news to us. That feels like so long ago, yet I remember every detail of that day like it was yesterday. I know that news has to be hard to deliver to parents, but her calming voice and compassion really was comforting. She asked us to refresh her memory on the pregnancy, what triggered the concern about the heart, etc. Than she used a heart model to go over the originally diagnosis we had, a AV Canal Defect. This is a three part defect. There is a hole in the dividing wall that separates the atria, a hole in the dividing wall that separates the ventricles, and a single valve develops rather than separated valves. Dr. Somerfield than explained that the valves are actually separated and working great! So Emerson no longer has a AV Canal Defect, but an ASD and VSD. So there is a significantly large hole in the lower chambers. The wall did not develop at all. And there is a moderate hole in the upper chamber. So this does have some of the wall. To repair these holes, open heart surgery is required. They will create patches where the holes are with pericardium.
The single valve was a complex part of the surgery. Of course any open heart surgery is complex, but when the valves are being repaired there is always a chance of the them leaking after surgery. This could result in additional surgeries. Hearing that the valves are separated and functioning helped us breathe a little bit easier!
She went over the surgery in detail and answered any of our questions. Including the important question of when will surgery be needed. It will all depend on how the upcoming weeks go. How Emerson handles his feedings, if he keeps gaining, etc. Since he was a premature, IGUR (Intrauterine Growth Restriction) baby, the weight goal is a little lower than a full term baby. She estimated around 7lbs. I was figuring that out in my head, and I thought that is very soon! Grant asked if she thought it would be in 2014, and she ideally she would like to do the surgery around April, but realistically it will probably be more like December. Woah. That is really soon.
She explained how important it is to keep him healthy. With RSV season approaching, it is very risky for him to get sick. She said if we have a problem with our pediatrician's office getting us qualified for the synagis shot, to give her office a call and they will see what they can do to help get him approved as well. If he does happen to get sick, he will most likely be hospitalized. And if that happens the surgery will be postponed 6-8 weeks from when hes discharged as a healthy baby. We really hope we can get approved for the synagis shot. It will lessen the severity if he does get sick. So I may be crazy about hand washing (for us and the people around us) for the next six months....dont say I didnt warn ya! :)
We also talked about Emerson's feedings. How much formula, the calorie count, anything we are giving him in addition. She explained how everything he eats has to be high calorie content. This not only gives him the weight he needs to put on, but also helps with his brain development. Did you know that brain development in the first three months of your life is the more than any other period in your life? She asked us to start tracking all his feedings and times. To her surprise we whip out an app where we have already been doing that. LOL She said we are the ideal parents. Thanks to that engineer husband of mine, and those NICU nurses trained us pretty well :)
We will be seeing Dr. Somerfield every other week, along with the pediatrician on opposite weeks. They will be in contact with each other to monitor how Emerson is doing with feedings and weight gain on a weekly basis. At some point Emerson's lungs will fill with fluid, and he will go on a diuretic to help get rid of the excess fluid. She also said that their first appointment of the day is at 9am, so she will always schedule us as at 8 am or 8:30 am. That way there hasn't been any other patients through the rooms yet, and they are still clean from the night cleaning. She also recommends that we do the same thing with the pediatrician appointments. Just another preventive so Emerson is in contact with as little germs as possible.
So much to digest, but I felt great leaving the appointment. Dr. Somerfield gave us a lot of great information and answered all our questions. I love that feeling of not feeing rushed in appointments, especially when your digesting such important information. Dr. Somerfield has such a kind, compassionate bedside manner to. Doctors like her really make this hard road a little easier to journey. I know we are in great hands, and a year from now I feel confident that we are going to look back and think...wow look how far we have come! :)
Yesterday was no different. We had our first appointment with Emerson's cardiologist and my nerves were on edge. But after a long three hours, Im happy to say that we received the best news yet! Emerson's heart defect isn't as complex as originally diagnosed! Small news that is so big for us!
Our appointment was originally scheduled for next friday, the 25th. I was a little concerned since Emerson was discharged from the hospital on October 2nd, 23 days from his discharge is a long time to wait. We were suppose to try to see the cardiologist within a week of his discharge but the 25th was the soonest appointment available. I voiced my concerns to our pediatrician, and while she thought is heart sounded good she said she would make a call to Detroit Children's Hospital to see if she can get him in sooner. We received a phone call about 10 minutes after leaving her office and it was our cardiologist moving our appointment up to the 18th. Thank you Dr. Earles!
The morning of the appointment was a little hectic, driving from Lake Orion to Detroit during rush hour can do that! And a uncomfortable baby up all night had me dragging a little bit. But our punctual daddy got us there with 15 minutes to spare ;) As we sat in the waiting room, all kinds of thoughts were going through my head. I just tried to let them go out of my mind as fast as they came in. We had an echocardiogram at the hospital a few days after Emerson was born, and we video conferenced with Children's Hospital, so we have the facts on his heart condition. But theres was still this little part of me that was worried that maybe something was missed.
We got called back and first they took Emerson's vitals. Emerson was nice and cozy, so was not a happy camper when I had to undress him to get his weight. Thankfully we brought a warm, fleece blanket to cuddle him in when he wasn't being examined. Weight was up to 4lbs 10oz! Almost 2lbs gained since birth :)
First up was an EKG. The nurse let us keep Emerson in the blanket to keep him warm. But the minute we set him on the table he was so upset. She started to put the leads on him, and it was seriously like 20 of them! He's so small they could barely fit on him. I think every inch of him was covered. The EKG was very short, probably like 2 minutes. Weird how fast that was. She tried to take the leads off quickly, but there was so many there wasnt anything quick about it. And in that short time they were stuck pretty good to his skin. I tried to keep him preoccupied so he wouldnt start crying as his sensitive skin was tugged at as she took all the leads off. Thank goodness for the pacifier, works every time!
The echocardiogram was next. We had the same ultrasound tech, Maria, that did our fetal echocardiograms, always nice to have some familiarity. They set up this cute little baby sized bed out of blankets on top of the exam table. Emerson sunk into it, and they snuggled him with more blankets to keep him warm. I wondered how he would react because he was a little difficult at the echo in the hospital. But their little secret was tucking his arms in one of the blankets. He loves his arms out so not sure how he would like that. And he was a little fussy, but once he had his pacifier he just sucked away, and eventually ended up falling asleep. It seemed like they were taking pictures of his heart FOREVER. I looked over at Grant and he looked nervous has he rested his face into his hands. I felt the same way. After about 75 pictures, the Maria said she was going to go check with the doctor to see if any more pictures were needed.
Those few minutes felt even longer. Grant looked at me and I could see the sadness in his eyes. He said its so hard to look at pictures, you can see how hard his heart is struggling. I dont know whats harder, dealing with my own emotions or seeing Grant's emotions during such a vulnerable time. Only 5 weeks in and we are experiencing those raw emotions of not being able to help your baby. Its out of our hands, and that is so hard. A doctor came in and told us she was part of the cardiologist team. She was going to take a few more pictures. She was also pregnant, so we talked a little bit about my pregnancy, where I delivered, Emersons birth, etc. She is delivering at Henry Ford West Bloomfield to, so I told her she is in great hands :) She took probably another 25 pictures and said Maria would be back in to take Emerson's leads off. Maria cleaned off the gel from Emerson and we were headed back to our exam room.
First we had a cardiologist fellow come see us. We went over family history, Emerson's history, what we our prenatal diagnosis was, and than she examined him. After that the fellow came back in with our cardiologist, Dr. Somerfield. We had her for our very first appointment where she delivered the heart defect news to us. That feels like so long ago, yet I remember every detail of that day like it was yesterday. I know that news has to be hard to deliver to parents, but her calming voice and compassion really was comforting. She asked us to refresh her memory on the pregnancy, what triggered the concern about the heart, etc. Than she used a heart model to go over the originally diagnosis we had, a AV Canal Defect. This is a three part defect. There is a hole in the dividing wall that separates the atria, a hole in the dividing wall that separates the ventricles, and a single valve develops rather than separated valves. Dr. Somerfield than explained that the valves are actually separated and working great! So Emerson no longer has a AV Canal Defect, but an ASD and VSD. So there is a significantly large hole in the lower chambers. The wall did not develop at all. And there is a moderate hole in the upper chamber. So this does have some of the wall. To repair these holes, open heart surgery is required. They will create patches where the holes are with pericardium.
The single valve was a complex part of the surgery. Of course any open heart surgery is complex, but when the valves are being repaired there is always a chance of the them leaking after surgery. This could result in additional surgeries. Hearing that the valves are separated and functioning helped us breathe a little bit easier!
She went over the surgery in detail and answered any of our questions. Including the important question of when will surgery be needed. It will all depend on how the upcoming weeks go. How Emerson handles his feedings, if he keeps gaining, etc. Since he was a premature, IGUR (Intrauterine Growth Restriction) baby, the weight goal is a little lower than a full term baby. She estimated around 7lbs. I was figuring that out in my head, and I thought that is very soon! Grant asked if she thought it would be in 2014, and she ideally she would like to do the surgery around April, but realistically it will probably be more like December. Woah. That is really soon.
She explained how important it is to keep him healthy. With RSV season approaching, it is very risky for him to get sick. She said if we have a problem with our pediatrician's office getting us qualified for the synagis shot, to give her office a call and they will see what they can do to help get him approved as well. If he does happen to get sick, he will most likely be hospitalized. And if that happens the surgery will be postponed 6-8 weeks from when hes discharged as a healthy baby. We really hope we can get approved for the synagis shot. It will lessen the severity if he does get sick. So I may be crazy about hand washing (for us and the people around us) for the next six months....dont say I didnt warn ya! :)
We also talked about Emerson's feedings. How much formula, the calorie count, anything we are giving him in addition. She explained how everything he eats has to be high calorie content. This not only gives him the weight he needs to put on, but also helps with his brain development. Did you know that brain development in the first three months of your life is the more than any other period in your life? She asked us to start tracking all his feedings and times. To her surprise we whip out an app where we have already been doing that. LOL She said we are the ideal parents. Thanks to that engineer husband of mine, and those NICU nurses trained us pretty well :)
We will be seeing Dr. Somerfield every other week, along with the pediatrician on opposite weeks. They will be in contact with each other to monitor how Emerson is doing with feedings and weight gain on a weekly basis. At some point Emerson's lungs will fill with fluid, and he will go on a diuretic to help get rid of the excess fluid. She also said that their first appointment of the day is at 9am, so she will always schedule us as at 8 am or 8:30 am. That way there hasn't been any other patients through the rooms yet, and they are still clean from the night cleaning. She also recommends that we do the same thing with the pediatrician appointments. Just another preventive so Emerson is in contact with as little germs as possible.
So much to digest, but I felt great leaving the appointment. Dr. Somerfield gave us a lot of great information and answered all our questions. I love that feeling of not feeing rushed in appointments, especially when your digesting such important information. Dr. Somerfield has such a kind, compassionate bedside manner to. Doctors like her really make this hard road a little easier to journey. I know we are in great hands, and a year from now I feel confident that we are going to look back and think...wow look how far we have come! :)
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