Sorry it has been so long since my last posting. Some of you have wondered if there was something seriously wrong. Not really. I just have been so busy and caught up with being at the hospital that by the time I get home, it’s either extremely late or I am extremely tired.
I want to start off the message by thanking everyone that showed up for the CHOC walk Sunday morning. I apologize if you don’t want your name listed here, but I want to recognize the wonderful turnout we had. Special thanks to:
Grandma Chris, Aunt Stephanie, Uncle Dave, Aunt Casey, Uncle Kyle, Jenny, Bruce & Erin, Lisa & Jeff, Rob, James, & Kathleen, Tiffany & Shawna.
Also, thank you to everyone who has made donations to support our team. You made walking that much more fun and motivating. It meant a lot to Brady, the babies, and myself.
We had a lot of fun. A little early for us all, but it was for a good cause. I think we will try to make this an annual event, so if you missed it this year, try for next year. We got a lot of good pictures for the babies as well. I will probably post them of Facebook. I think that is gong to be the easiest way.
We will move on now to my sweet babies….
Madaline continues to do well. Her feeds have now been increased to 40 cc’s every 3 hours. That comes out to approximately an ounce and a half. On Monday they needed to stop her feeds for about 12 hours so they could give her a blood transfusion. They came to the conclusion that it will help with her heart rate and keep her from burning calories that she could be using for weight gain and energy. Her weight as of yesterday was 4lbs. 3oz. They stop the feed to avoid other medical issues like NEC (which is an intestinal infection that she had before. It can be extremely dangerous.)
We are continuing with the attempt to breastfeed. Today she had 3 cc’s by breast and the rest by her feeding tube. She tuckers out pretty easily by doing this, but she will catch on. She has been doing great with her bottle-feeding, which she gets 2 times a day. The last feed she had by bottle she took 21 cc’s. Surprisingly the muscles you use for breast and bottle are different, so she has to learn both. There’s so much to learn for both techniques, it amazes me. It is different for preemies compared to full term babies, so anyone who watched both babies is going to have to learn how to feed them if I’m not around.
Monday night was a big night for Brady. It was his first time giving Madaline a bath. He seemed to enjoy himself until he lifted her bottom to clean it and found that she had a little surprise for him, a #2. Good job sweetheart! That’s my girl!
She had another eye exam today so make sure her sight is still on track and they are. She’s doing well. She may even be home within 3 weeks or so, if all continues to go well.
Now my little man… There is so much to try to remember, it’s hard to keep up. Friday the doctor came to talk to me and told me that Ethan was doing better than he thought and was anticipating taking he breathing tube out sometime during the weekend. At that point his biggest concern was his feeding. He really wanted to focus on getting his feeding volume up so that he could start gaining some weight and get off the IV medications since they can be so hard on the liver. Especially since it is an immature one. Well, after the walk on Sunday, Stephanie and I went to the hospital to visit the babies. They were planning to take Ethan’s breathing tube out since he was doing so well. The plan was to put him on CPAP machine again. We stuck around by his bedside to watch them extubate. Sadly it was not successful. They took the tube out and he immediately seized. They tried to bag him, and his air way was completely closed and they couldn’t get air down to his lungs. They had to put the tube right back in. It was pretty scary to watch them have to do that for the second time. This time was more emergent though since they couldn’t get air into his lungs. Because of all the trauma that caused for him, he had a very rough night and may have had more seizure activity and they had to give him Ativan to help him relax. Also, because of all the issues that on Sunday, they discontinued his feeds for a few days which has now put us back to square one. It feels like we try to make one step forward, then we move 2 steps back. The next step may be to try to extubate again when he is healthy enough to do it. If that is not successful, they may give him a steroid to help his throat muscles strengthen. The problem is that the side effects to the medications is Cerebral Palsy, which is already a concern that we have for him. Hopefully we will not have to travel that road. So please keep up the prayers.
In the meantime, we are still waiting to do the MRI. It will probably happen sometime late this month or early next month. Not soon enough though. They did decide to start the video EEG today. He has a bunch of wires hooked up to his tiny little head right now measuring his brain activity. I feel so bad for my little man. Ay least it’s not invasive. They want to see if some of the movements he is having are normal, or if they are seizures. I really hope everything is ok. We also received his chromosome test back and it was normal. At this point we have to talk to Genetics to see what the next step is. He also had his eye exam today. The doctor said his eyes are looking okay for his age and what he s going through. He will probably have them checked again in a couple weeks to see how he is progressing.
This is just a taste of all the things going on. During the day at the hospital, I am visited by so many different people, from different departments, and we have to address different issues with both babies. It can be very hard to keep up with.
Halloween is coming up and I am still trying to decide if I am dressing up the babies. I have a couple ideas in my head, so stay tuned.
As a side note, please forgive me for my spelling or grammar. I am usually writing this late at night and I get too tired to proof read. Don’t hold it against me
I will try to stay up on the blog more often than I have this past week. In the meantime, I am asking that you please continue praying for Ethan, Madaline and all of the people that are there taking care of them right now.
Thank you and God Bless!
Wednesday, October 20, 2010
Wednesday, October 13, 2010
Suck, Swallow, & BREATHE
Hello all.... There is lots to share (including pictures!). So sit back relax and grab a cup of coffee.
We will start with Madaline first. She is doing well. They took her off the oxygen after a day or so and she is doing okay. Her heart rate continues to be on the higher side still. They think it may be because she is anemic. They don't want to give her a blood transfusion just yet though because her body is starting to produce red blood cells. If they gave her a transfusion, it would send a message to her body not to produce the red blood cells which would make it harder in the future for her, so they are trying to hold off as long as possible before they do another one. It may happen in the next couple days though. Madaline's feeds continue to increase daily. she s getting about 24cc's every 3 hours. What they are starting to do now is add vitamins and extra calories to them so that she can gain weigh. This is normal about this time. She is not liking the extra vitamins that they are putting in though. She spit up on me yesterday (which required my first wardrobe change due to baby-spit-up) She also has been a little more gassy (which she gets from her father).
Today we tried to breast feed. It wasn't very successful because the therapist and I got into her room a little late since we were handling some stuff with Ethan. she fell asleep right when we started, But there is always tomorrow. In fact, we might try the bottle tomorrow since she will have to learn both. When they are trying to teach babies to eat there are 3 components that are necessary for the action of eating. Suck, swallow and breathing. All 3 of these things must be established before she can learn to eat. We take it for granted, but its something we have to do as well.
She also had her PICC line (long term IV) removed today. Hopefully she will not need it for the rest of her stay at the hospital. They try to remove it as soon as possible to reduce the risk of infection.
Ethan is showing some signs of improvement from last Friday. They doctor decided move put him on a convention breathing machine today. This is one step down from the other machine. Hopefully he will respond well to it and continue to improve his respiratory state. When they were moving him to the other machine, he has his eyes wide open. We got to lock eyes for a few minutes while they had is incubator open. It was nice to see him close up instead of through the clear incubator.
I had a meeting with one of the doctors a couple days ago and he is not sure what happened last week that would have triggered his downward spiral. However, the tests that were done for infection came back and were mostly negative. Because of that, he was taken off of a majority of his meds and kept on just 1. Since they did that, they were able to start up his feeds again. He is only getting 1.1cc of milk every 3 hours, but like I have said, some is better than none. His lungs are also showing to have improved and aren't looking as "wet" as a few days ago. In talking with the doctor I asked if he thought it might be pneumonia. He said that they aren't sure since they symptoms for that present themselves like some other issue that he could be having. However, they are treating him as if that is what he had. (Maybe I am a doctor!)
We have also been trying to get him back on track with his physical therapy. the last few days he has been very touchy, but today he tolerated it pretty well. He is still retaining a lot of fluid though, and hopefully the therapy will help with that.
Onto the big stuff...
Ethan is still having some form of seizure like activity. It has been happening every other day of so, but they are giving him medication that help control them.
Brady and I met with the doctor today to talk about what the next couple steps for Ethan will be. He is glad to see that there is improvement from last week, but reminded us that by no means is he out of the woods yet. Pending that Ethan remains stable and/or shows signs of improvement, they are going to do another EEG called a "Video EEG". It tests his brain waves over a 24 hour period of time versus a 20 minute period which they had done before. This is the test that they did that they told us that he has very abnormal brain activity. Also, they will plan to do an MRI of his spine and head by the end of the month. It will be hard to wait that long, but that's all part of the roller coaster ride. On top of that they want us to keep in mind that because he is not showing signs of major improvement in his legs, there is going to be a chance that he has cerebral palsy. At what level is still unknown as this is all speculation. For now, they just want us to keep that in mind. So again, there could be developmental problems as well as physical ones. But everything is up in the air still. they also did a chromosome test last week that we are still waiting to hear the results on.
Through all of this, I still look at him and think he is just perfect. He has the sweetest eyes and cutest nose. He even has a little pouting lip when he isn't happy. I'm so in love!
Picture time!
We are going to try things a little different this time.
From right to left:
Ethan's Diaper, Madaline's First Diaper, and a Newborn Diaper
From right to left:
Ethan's first Pacifier (which he has on;y used once so far), Madaline's First Pacifier, and a regular size Pacifier
This is there feeding amounts (a couple days ago). Ethan's is on top and Madaline is on the bottom. They are fed every 3 hours.
This is a picture I got of Ethan today.
Ethan's feet
This is Madaline showing us her "Model Lips"
Madaline and I doing Kangaroo Care
We will start with Madaline first. She is doing well. They took her off the oxygen after a day or so and she is doing okay. Her heart rate continues to be on the higher side still. They think it may be because she is anemic. They don't want to give her a blood transfusion just yet though because her body is starting to produce red blood cells. If they gave her a transfusion, it would send a message to her body not to produce the red blood cells which would make it harder in the future for her, so they are trying to hold off as long as possible before they do another one. It may happen in the next couple days though. Madaline's feeds continue to increase daily. she s getting about 24cc's every 3 hours. What they are starting to do now is add vitamins and extra calories to them so that she can gain weigh. This is normal about this time. She is not liking the extra vitamins that they are putting in though. She spit up on me yesterday (which required my first wardrobe change due to baby-spit-up) She also has been a little more gassy (which she gets from her father).
Today we tried to breast feed. It wasn't very successful because the therapist and I got into her room a little late since we were handling some stuff with Ethan. she fell asleep right when we started, But there is always tomorrow. In fact, we might try the bottle tomorrow since she will have to learn both. When they are trying to teach babies to eat there are 3 components that are necessary for the action of eating. Suck, swallow and breathing. All 3 of these things must be established before she can learn to eat. We take it for granted, but its something we have to do as well.
She also had her PICC line (long term IV) removed today. Hopefully she will not need it for the rest of her stay at the hospital. They try to remove it as soon as possible to reduce the risk of infection.
Ethan is showing some signs of improvement from last Friday. They doctor decided move put him on a convention breathing machine today. This is one step down from the other machine. Hopefully he will respond well to it and continue to improve his respiratory state. When they were moving him to the other machine, he has his eyes wide open. We got to lock eyes for a few minutes while they had is incubator open. It was nice to see him close up instead of through the clear incubator.
I had a meeting with one of the doctors a couple days ago and he is not sure what happened last week that would have triggered his downward spiral. However, the tests that were done for infection came back and were mostly negative. Because of that, he was taken off of a majority of his meds and kept on just 1. Since they did that, they were able to start up his feeds again. He is only getting 1.1cc of milk every 3 hours, but like I have said, some is better than none. His lungs are also showing to have improved and aren't looking as "wet" as a few days ago. In talking with the doctor I asked if he thought it might be pneumonia. He said that they aren't sure since they symptoms for that present themselves like some other issue that he could be having. However, they are treating him as if that is what he had. (Maybe I am a doctor!)
We have also been trying to get him back on track with his physical therapy. the last few days he has been very touchy, but today he tolerated it pretty well. He is still retaining a lot of fluid though, and hopefully the therapy will help with that.
Onto the big stuff...
Ethan is still having some form of seizure like activity. It has been happening every other day of so, but they are giving him medication that help control them.
Brady and I met with the doctor today to talk about what the next couple steps for Ethan will be. He is glad to see that there is improvement from last week, but reminded us that by no means is he out of the woods yet. Pending that Ethan remains stable and/or shows signs of improvement, they are going to do another EEG called a "Video EEG". It tests his brain waves over a 24 hour period of time versus a 20 minute period which they had done before. This is the test that they did that they told us that he has very abnormal brain activity. Also, they will plan to do an MRI of his spine and head by the end of the month. It will be hard to wait that long, but that's all part of the roller coaster ride. On top of that they want us to keep in mind that because he is not showing signs of major improvement in his legs, there is going to be a chance that he has cerebral palsy. At what level is still unknown as this is all speculation. For now, they just want us to keep that in mind. So again, there could be developmental problems as well as physical ones. But everything is up in the air still. they also did a chromosome test last week that we are still waiting to hear the results on.
Through all of this, I still look at him and think he is just perfect. He has the sweetest eyes and cutest nose. He even has a little pouting lip when he isn't happy. I'm so in love!
Picture time!
We are going to try things a little different this time.
From right to left:
Ethan's Diaper, Madaline's First Diaper, and a Newborn Diaper
From right to left:
Ethan's first Pacifier (which he has on;y used once so far), Madaline's First Pacifier, and a regular size Pacifier
This is there feeding amounts (a couple days ago). Ethan's is on top and Madaline is on the bottom. They are fed every 3 hours.
This is a picture I got of Ethan today.
Ethan's feet
This is Madaline showing us her "Model Lips"
Madaline and I doing Kangaroo Care
Sunday, October 10, 2010
A lot of prayers and a little change
Well this weekend has been a little more quiet.
Ethan is doing a little better on the breathing machine since Friday night. The oxygen level and settings have gone down a little bit(which is good), But we still have a long way to go. When I went to visit a couple times yesterday, Ethan was extremely touchy. The minute I put my hand on him to let him know that we were there, he started to DSAT. So he really wasn't feeling up to being touched right now. It's like when you are feeling really sick and sore, then someone comes to touch you and it hurts. That's kind of how it feels for him. It makes it hard as a mom because you want to touch him to let him know that you're there supporting him, but he just can't handle that right now. Hopefully it will continue to improve. We have to make up for a lot of steps backward, so this is going to take a while. He is going to continue to get the antibiotics for a least 14 days, so he won't be able to have milk the entire time. They also had done a stomach ultrasound and chest x-ray to make sure the infection that he hasn't started to attack his major organs. So far so good. His lungs are very wet though (which means a lot of fluid), which would make me think he has pneumonia, but I'm not a doctor. Hopefully we will get results from the other tests that were done to help us find out what type of infection he has.
Madaline is doing pretty good. Last night we did another session of non-nutritive feeding and she did very well. I can't wait to report to the developmental staff (Karin) about her progress. Her heart rate has been a little high the last few days. They have been keeping an eye on it to make sure nothing else would indicate a problem. But the nurse today decided to put her back on the nasal cannula to give her a little more oxygen. Her heart went back to normal rate, so they are considering keeping it on for a few days so that she doesn't waste extra calories working so hard to breathe. It isn't a major concern at this point. We will just keep an eye on it.
We have been getting a lot of love and support in the last few days from all of you and it has been helping us get through things right now. It's so hard to find the right words to say or show how much it all means to us. All I can think of is THANK YOU. Thank you for the emails, the calls, the hugs, the shared tears, and coffee cake (Thanks Jenny). We have had the support of Brady's and my family coming down to the hospital to just sit in the lobby, and it means a lot. Your prayer has been very powerful this weekend and I can only say thank you and please keep it up folks. God started his miracle with giving us these beautiful babies, and we are just waiting for him to finish it by making them healthy so they can come home to us soon.
Update for CHOC walk:
The 20th annual CHOC walk is next Sunday. So far we have 16 walkers signed up. We haven't quite reached our goal of walkers, so please go to www.CHOCwalk.net/therichards. Select "My Team Page" at the top center and then "Join The Team" at the top. We want to try to pick up the teams wrist bands and t-shirts before the day of the walk, so please register today. Please remember that you must pay or get sponsored at least $50 before you can walk. We can't pick up your wristband or t-shirt if you haven't paid or got sponsored.
Also, thank you to everyone who has made a donation as well. Your support makes our walk that much more motivating and exciting.
The day of the walk, I was going to try to have special t-shirts made for the team, but time has not permitted it, so I don't think it's going to happen. As an alternate, we can all wear white shirts, or if someone else has any suggestions, please email me. remember, we will be taking lots of pictures the day of the event, so slap on your rouge and slick back your hair.
I can't wait to share this with Madaline and Ethan when they get older. Who knows. If we keep this going, they might be walking with us in a couple years.
Pictures:
I know I haven't posted any pics lately. I have been trying to get some of Ethan, but he just too sick right now. I will see if Madaline is up for any within the next day or so as well. She has been showing us her Model Lips lately and its really cute.
Ethan is doing a little better on the breathing machine since Friday night. The oxygen level and settings have gone down a little bit(which is good), But we still have a long way to go. When I went to visit a couple times yesterday, Ethan was extremely touchy. The minute I put my hand on him to let him know that we were there, he started to DSAT. So he really wasn't feeling up to being touched right now. It's like when you are feeling really sick and sore, then someone comes to touch you and it hurts. That's kind of how it feels for him. It makes it hard as a mom because you want to touch him to let him know that you're there supporting him, but he just can't handle that right now. Hopefully it will continue to improve. We have to make up for a lot of steps backward, so this is going to take a while. He is going to continue to get the antibiotics for a least 14 days, so he won't be able to have milk the entire time. They also had done a stomach ultrasound and chest x-ray to make sure the infection that he hasn't started to attack his major organs. So far so good. His lungs are very wet though (which means a lot of fluid), which would make me think he has pneumonia, but I'm not a doctor. Hopefully we will get results from the other tests that were done to help us find out what type of infection he has.
Madaline is doing pretty good. Last night we did another session of non-nutritive feeding and she did very well. I can't wait to report to the developmental staff (Karin) about her progress. Her heart rate has been a little high the last few days. They have been keeping an eye on it to make sure nothing else would indicate a problem. But the nurse today decided to put her back on the nasal cannula to give her a little more oxygen. Her heart went back to normal rate, so they are considering keeping it on for a few days so that she doesn't waste extra calories working so hard to breathe. It isn't a major concern at this point. We will just keep an eye on it.
We have been getting a lot of love and support in the last few days from all of you and it has been helping us get through things right now. It's so hard to find the right words to say or show how much it all means to us. All I can think of is THANK YOU. Thank you for the emails, the calls, the hugs, the shared tears, and coffee cake (Thanks Jenny). We have had the support of Brady's and my family coming down to the hospital to just sit in the lobby, and it means a lot. Your prayer has been very powerful this weekend and I can only say thank you and please keep it up folks. God started his miracle with giving us these beautiful babies, and we are just waiting for him to finish it by making them healthy so they can come home to us soon.
Update for CHOC walk:
The 20th annual CHOC walk is next Sunday. So far we have 16 walkers signed up. We haven't quite reached our goal of walkers, so please go to www.CHOCwalk.net/therichards. Select "My Team Page" at the top center and then "Join The Team" at the top. We want to try to pick up the teams wrist bands and t-shirts before the day of the walk, so please register today. Please remember that you must pay or get sponsored at least $50 before you can walk. We can't pick up your wristband or t-shirt if you haven't paid or got sponsored.
Also, thank you to everyone who has made a donation as well. Your support makes our walk that much more motivating and exciting.
The day of the walk, I was going to try to have special t-shirts made for the team, but time has not permitted it, so I don't think it's going to happen. As an alternate, we can all wear white shirts, or if someone else has any suggestions, please email me. remember, we will be taking lots of pictures the day of the event, so slap on your rouge and slick back your hair.
I can't wait to share this with Madaline and Ethan when they get older. Who knows. If we keep this going, they might be walking with us in a couple years.
Pictures:
I know I haven't posted any pics lately. I have been trying to get some of Ethan, but he just too sick right now. I will see if Madaline is up for any within the next day or so as well. She has been showing us her Model Lips lately and its really cute.
Friday, October 8, 2010
We NEED your prayer
Well posting has been a little difficult over the last few days.
Lets start with Madaline... She is continuing to be our little rock star. She is breathing on her own, tolerating her feeds as they increase and doing rather well. She also had her first eye exam that was far from comfortable for her. In the end the doctor said that she is on track for her age and he does not see any significant problems to be concerned about. He will continue to do exams until she leaves to make sure her eyes are developing properly. She is definitely going to be our "Heart Stopper". She is so darn cute, its hard not smile when you look at her.
Onto Ethan... The past few days have been more than a challenge on so many levels to say the least. On Wednesday morning Ethan had what the nurses thought might have been a seizure. They had a Neurologist come in and do an exam. They put him on anti-seizure meds just in case while they planned a couple tests; one being an EEG that will show his brain activity as well as possibly seeing at what stage his brain is developed. They also re-intubated him to help him breathe a little easier. They were concerned that his muscles are so tense. At this point they also felt it necessary to bring on a Genetics specialist to see if he has any abnormalities that could be detected at this stage of the game. The day had ended a little optimistic when one of the doctors that did his evening evaluation said she was not entirely convinced that he had a seizure.
Thursday came and the Genetics specialist came in and did a consult on him. She told us that at this point she did not see anything that would indicate the initial diseases she thought may be causing a lot of the issues he is having. She said that she would do a follow-up exam in due time. She also ordered a chromosomes test to be done that will take about a week to get the results back on. She did notice that his muscles were very tight as well.
Then the Neonatologist came in to see us and said that he was not entirely convince that Ethan had seizure on Wednesday as well. However, he did find out that he has another infection that could be causing the issues he is having. They are going to keep him on the anti-seizure meds just in case as well as putting him on a couple antibiotics. He also moved him from the conventional breathing machine, to the highest machine (called an Oscillator) since he was not responding well to the other. I am thinking at this point that while moving him to the other machine is not good, his infections could be the reason for all of this and at least we have an answer. The problem came when Ethan had to go really high on the settings for the Oscillator and the oxygen level was being increased throughout the night. At this point, he has had his EEG done and we are still waiting on the results. Again, this will tell us if he is having seizure activity in his brain.
Friday, I called in the morning to check on him and they said that his ventilation settings were pretty high (up to 80% oxygen) and he was extremely sensitive to any kind of touch. When I got into the hospital I was greeted by an infection control doctor. He said that Ethan definitely has an infection and they are doing some tests to figure out where it is coming from. He may be Septic, he may have pneumonia, it may be fungal. Also his platelet levels were down. His are at 114,000 and it should be around 150,000 which is an indication of an infection. The are going to keep him on the antibiotics and wait to see what the test results come back and say. Hopefully they can pin point were it is. In the meantime, they will treat it on a general level and try to cover as many basis as possible. After he left, I went to see my little man and the nurse said that the EEG results were back and she paged the Neurologist and the Neonatologist to come and talk to Brady and I. We went in the meeting room where the Neurologist proceeded to tell us that the EEG came back and Ethan is having abnormal brain activity. He is not quite sure if it is seizures or not, but they can't do the other test (MRI) that would help determine that because of the heart surgery he had a few weeks ago. Since the MRI is a magnet and there is a metal clasp around his heart they can't do it for at least another 3 weeks. They also can not do a CT scan on him because the machine is at St. Joseph's hospital and he is to unstable at this point to bring him over there. The Neurologist then tells us that the prognosis is not good. Most babies his size with these type of issues either don't make it, or have severe mental disabilities....
So basically, they are saying that there is a strong possibility that our son may pass away. And if that's not the case, he is going to have a very steep, uphill battle that could very well include sever disabilities. The doctor said that at this stage in the game, he is considered to be in very critical condition.
What do you say to that? Nothing, you just cry, and that's what we did. Brady made a good point to remind me that whatever God has given us is what is planned for us. I want God's plan to keep me with my son.
The rest of the afternoon, we sat with Ethan just touching him so he knew that we were there with him. He seemed to have stabilized (not gone up or down) during this time. My mom, Jeff and Alix came down to the hospital to offer support and love. and for that, we thank them so much. We also called St. John's and asked that they have a pastor come over and have both Ethan and Madaline baptized. Most of the pastors had gone on a weekend retreat. But we had the honor of having Pastor Hayes from St. John's come in and pray with us and Baptize both of the babies. Both Brady and I were able to take part in putting the holy water on our babies head for the process.
I feel like we are in a nightmare and hopefully I will wake up tomorrow and see that my sweet boy is doing better. We've gone home for the night to try and get some rest and will return to the hospital tomorrow.
In the meantime, I ask that you PLEASE pray for our Little Superman and that you ask your friends and family to do the same. He has been so brave and strong so far. We just want to ask God that he continues to give Ethan the courage and strength to keep fighting whatever is trying to bring him down. We know that every prayer counts and gives him that much more strength.
I will try to make another post with updates as soon as I have the strength, or time.
With love and appreciation,
Jamie & Brady
Lets start with Madaline... She is continuing to be our little rock star. She is breathing on her own, tolerating her feeds as they increase and doing rather well. She also had her first eye exam that was far from comfortable for her. In the end the doctor said that she is on track for her age and he does not see any significant problems to be concerned about. He will continue to do exams until she leaves to make sure her eyes are developing properly. She is definitely going to be our "Heart Stopper". She is so darn cute, its hard not smile when you look at her.
Onto Ethan... The past few days have been more than a challenge on so many levels to say the least. On Wednesday morning Ethan had what the nurses thought might have been a seizure. They had a Neurologist come in and do an exam. They put him on anti-seizure meds just in case while they planned a couple tests; one being an EEG that will show his brain activity as well as possibly seeing at what stage his brain is developed. They also re-intubated him to help him breathe a little easier. They were concerned that his muscles are so tense. At this point they also felt it necessary to bring on a Genetics specialist to see if he has any abnormalities that could be detected at this stage of the game. The day had ended a little optimistic when one of the doctors that did his evening evaluation said she was not entirely convinced that he had a seizure.
Thursday came and the Genetics specialist came in and did a consult on him. She told us that at this point she did not see anything that would indicate the initial diseases she thought may be causing a lot of the issues he is having. She said that she would do a follow-up exam in due time. She also ordered a chromosomes test to be done that will take about a week to get the results back on. She did notice that his muscles were very tight as well.
Then the Neonatologist came in to see us and said that he was not entirely convince that Ethan had seizure on Wednesday as well. However, he did find out that he has another infection that could be causing the issues he is having. They are going to keep him on the anti-seizure meds just in case as well as putting him on a couple antibiotics. He also moved him from the conventional breathing machine, to the highest machine (called an Oscillator) since he was not responding well to the other. I am thinking at this point that while moving him to the other machine is not good, his infections could be the reason for all of this and at least we have an answer. The problem came when Ethan had to go really high on the settings for the Oscillator and the oxygen level was being increased throughout the night. At this point, he has had his EEG done and we are still waiting on the results. Again, this will tell us if he is having seizure activity in his brain.
Friday, I called in the morning to check on him and they said that his ventilation settings were pretty high (up to 80% oxygen) and he was extremely sensitive to any kind of touch. When I got into the hospital I was greeted by an infection control doctor. He said that Ethan definitely has an infection and they are doing some tests to figure out where it is coming from. He may be Septic, he may have pneumonia, it may be fungal. Also his platelet levels were down. His are at 114,000 and it should be around 150,000 which is an indication of an infection. The are going to keep him on the antibiotics and wait to see what the test results come back and say. Hopefully they can pin point were it is. In the meantime, they will treat it on a general level and try to cover as many basis as possible. After he left, I went to see my little man and the nurse said that the EEG results were back and she paged the Neurologist and the Neonatologist to come and talk to Brady and I. We went in the meeting room where the Neurologist proceeded to tell us that the EEG came back and Ethan is having abnormal brain activity. He is not quite sure if it is seizures or not, but they can't do the other test (MRI) that would help determine that because of the heart surgery he had a few weeks ago. Since the MRI is a magnet and there is a metal clasp around his heart they can't do it for at least another 3 weeks. They also can not do a CT scan on him because the machine is at St. Joseph's hospital and he is to unstable at this point to bring him over there. The Neurologist then tells us that the prognosis is not good. Most babies his size with these type of issues either don't make it, or have severe mental disabilities....
So basically, they are saying that there is a strong possibility that our son may pass away. And if that's not the case, he is going to have a very steep, uphill battle that could very well include sever disabilities. The doctor said that at this stage in the game, he is considered to be in very critical condition.
What do you say to that? Nothing, you just cry, and that's what we did. Brady made a good point to remind me that whatever God has given us is what is planned for us. I want God's plan to keep me with my son.
The rest of the afternoon, we sat with Ethan just touching him so he knew that we were there with him. He seemed to have stabilized (not gone up or down) during this time. My mom, Jeff and Alix came down to the hospital to offer support and love. and for that, we thank them so much. We also called St. John's and asked that they have a pastor come over and have both Ethan and Madaline baptized. Most of the pastors had gone on a weekend retreat. But we had the honor of having Pastor Hayes from St. John's come in and pray with us and Baptize both of the babies. Both Brady and I were able to take part in putting the holy water on our babies head for the process.
I feel like we are in a nightmare and hopefully I will wake up tomorrow and see that my sweet boy is doing better. We've gone home for the night to try and get some rest and will return to the hospital tomorrow.
In the meantime, I ask that you PLEASE pray for our Little Superman and that you ask your friends and family to do the same. He has been so brave and strong so far. We just want to ask God that he continues to give Ethan the courage and strength to keep fighting whatever is trying to bring him down. We know that every prayer counts and gives him that much more strength.
I will try to make another post with updates as soon as I have the strength, or time.
With love and appreciation,
Jamie & Brady
Tuesday, October 5, 2010
The twins at 4 weeks (And the beeps go on....)
Another few days have passed in the "Small Baby" NICU. With the beeps and buzzing of alarms.
Lately it seems that things are being added faster to Ethan's "To Do' list than they are being taken off. We are a little concerned that about an indent in his mouth that has not resolved yet. It looks like the tubing that has been in his mouth has made its mark (if that's what it is). I just hope it's not here to stay. The doctor, nurse and nurse practitioner came in today to look at it and said that they will keep an eye on it. It is doesn't resolve itself, they will have a Genetics specialist come in to see if it was just the way he was born.
Also, as I have mentioned in previous blogs, Ethan has been working with a development team on his arms and legs. The arms are showing signs of improvement at a "Steady" pace. His legs however have been loosening up a bit. But the progress on his legs is extremely slow. He is not showing any resistance when you push on them and he has minimal reaction when you try to stimulate them. They ordered a spinal ultrasound that was done last night. The results came back as negative today for any abnormality. So they are having a Neurologist come in tomorrow to do a consult to see if there is anything to be concerned with now. Or, if we need to wait a little longer until he develops. While a lot of these issues are not a major immediate concerns, they all affect him long term. So it raises the question. How hard is it going to be for him when he gets older? Will he have any disabilities? I guess we will have to wait at this point to see what happens.
In the mean time, Ethan continues his quest to do better on the CPAP machine. He is about the same as he was a few days ago. The only difference is that they have changed lowered the settings of pressure. The oxygen levels remain the same, so we will watch and wait to see how he responds. He is still retaining fluids, but they re going to hold off on the diarrhetic to see if he can release the fluid himself.
Ethan is also stable with his feeds. They doctors are considering bumping it up a little tomorrow or the next day pending nothing comes up. Again, cross those fingers boys and girls. We want to get some meat on our Little Superman's bones.
Madaline is doing well. She gets TONS of complements from the staff about how darn cute she is (and Ethan too). I asked them if they say that about all the babies. They said no, they just wouldn't say anything at all. Or they would point out how nice their toes are, or something like that.
As of yesterday, Madaline has been taken off the oxygen completely. She is responding very well and we are extremely happy to be able to see more of her face. I'm sure she is a lot more comfortable as well. She had another bath last night. She was a little squirmy at first, but then just gave in and relaxed into it. I'm sure the heat lamps helped a little. The nurse did some suctioning in her nose a pulled out a man-size booger. Who would have though something so gross would come out of something so cute.
Her feeding volume continues to increase and she is responding well to that as well. Yesterday and today were pretty big days for her. Milk was introduced to her mouth yesterday and she enjoyed it very much. The developmental person (Karin), was very impressed at Madaline's ability to suck. Because she is doing so well, we tries a "Non-nutratiive" feeding today. Basically, it means breast feeding without the milk by mouth, but by feeding tube. She did okay, but seemed to want to sleep and snuggle more than anything. The goal is to get the babies to associate a mother's heartbeat, smell, skin-to-skin contact, & breast to a eating and a full belly. We will continue this about 1-2 times a day. And when Ethan is ready, we will do the same with him.
Tomorrow is going to be a big day for the twins. Both have their routine first eye exams. Also, Madaline has a routine ultrasound to make sure that there is not any hemorrhaging in her brain. It's not a concern they have, it's just routine. And Ethan has a consult with the Neurologist. They both also have their daily therapy. Who would have thought that being a mom would mean I have to be their secretary as well. Hopefully, my new bosses will allow me a potty break in between appointments. It's a good thing they pay me well. With good looks and lots of love.
Per the request of some followers, I have been asked to post the weight of Madaline and Ethan.
As of last night Ethan's weight is 1lb, 11oz. Some of the weight may be "Water" weight, but none the less, I think he has gained some weight from his original birth weight of 1lb, 5oz.
Madaline weights 3lbs, 7oz, She is a little rock star.
As a reminder, the CHOC walk is coming up in week from this Sunday. We have have 14 people so far sign up to walk. We would love to have you come out and join us. If you can't walk, you can always help by sponsoring our team. Either way, you can go to www.CHOCwalk.net/therichards to register and/or donate. To those of you that have already signed up and/or donated, I can tell you how grateful and excited we are to have your support. Thank you.
Well lots to do tomorrow, so I should try to get some rest. My next post, I am going to give some pictures that will hopefully put their size into perspective. Stay tuned for the next chapter in our 20 Fingers, 20 Toes.
Lately it seems that things are being added faster to Ethan's "To Do' list than they are being taken off. We are a little concerned that about an indent in his mouth that has not resolved yet. It looks like the tubing that has been in his mouth has made its mark (if that's what it is). I just hope it's not here to stay. The doctor, nurse and nurse practitioner came in today to look at it and said that they will keep an eye on it. It is doesn't resolve itself, they will have a Genetics specialist come in to see if it was just the way he was born.
Also, as I have mentioned in previous blogs, Ethan has been working with a development team on his arms and legs. The arms are showing signs of improvement at a "Steady" pace. His legs however have been loosening up a bit. But the progress on his legs is extremely slow. He is not showing any resistance when you push on them and he has minimal reaction when you try to stimulate them. They ordered a spinal ultrasound that was done last night. The results came back as negative today for any abnormality. So they are having a Neurologist come in tomorrow to do a consult to see if there is anything to be concerned with now. Or, if we need to wait a little longer until he develops. While a lot of these issues are not a major immediate concerns, they all affect him long term. So it raises the question. How hard is it going to be for him when he gets older? Will he have any disabilities? I guess we will have to wait at this point to see what happens.
In the mean time, Ethan continues his quest to do better on the CPAP machine. He is about the same as he was a few days ago. The only difference is that they have changed lowered the settings of pressure. The oxygen levels remain the same, so we will watch and wait to see how he responds. He is still retaining fluids, but they re going to hold off on the diarrhetic to see if he can release the fluid himself.
Ethan is also stable with his feeds. They doctors are considering bumping it up a little tomorrow or the next day pending nothing comes up. Again, cross those fingers boys and girls. We want to get some meat on our Little Superman's bones.
Madaline is doing well. She gets TONS of complements from the staff about how darn cute she is (and Ethan too). I asked them if they say that about all the babies. They said no, they just wouldn't say anything at all. Or they would point out how nice their toes are, or something like that.
As of yesterday, Madaline has been taken off the oxygen completely. She is responding very well and we are extremely happy to be able to see more of her face. I'm sure she is a lot more comfortable as well. She had another bath last night. She was a little squirmy at first, but then just gave in and relaxed into it. I'm sure the heat lamps helped a little. The nurse did some suctioning in her nose a pulled out a man-size booger. Who would have though something so gross would come out of something so cute.
Her feeding volume continues to increase and she is responding well to that as well. Yesterday and today were pretty big days for her. Milk was introduced to her mouth yesterday and she enjoyed it very much. The developmental person (Karin), was very impressed at Madaline's ability to suck. Because she is doing so well, we tries a "Non-nutratiive" feeding today. Basically, it means breast feeding without the milk by mouth, but by feeding tube. She did okay, but seemed to want to sleep and snuggle more than anything. The goal is to get the babies to associate a mother's heartbeat, smell, skin-to-skin contact, & breast to a eating and a full belly. We will continue this about 1-2 times a day. And when Ethan is ready, we will do the same with him.
Tomorrow is going to be a big day for the twins. Both have their routine first eye exams. Also, Madaline has a routine ultrasound to make sure that there is not any hemorrhaging in her brain. It's not a concern they have, it's just routine. And Ethan has a consult with the Neurologist. They both also have their daily therapy. Who would have thought that being a mom would mean I have to be their secretary as well. Hopefully, my new bosses will allow me a potty break in between appointments. It's a good thing they pay me well. With good looks and lots of love.
Per the request of some followers, I have been asked to post the weight of Madaline and Ethan.
As of last night Ethan's weight is 1lb, 11oz. Some of the weight may be "Water" weight, but none the less, I think he has gained some weight from his original birth weight of 1lb, 5oz.
Madaline weights 3lbs, 7oz, She is a little rock star.
As a reminder, the CHOC walk is coming up in week from this Sunday. We have have 14 people so far sign up to walk. We would love to have you come out and join us. If you can't walk, you can always help by sponsoring our team. Either way, you can go to www.CHOCwalk.net/therichards to register and/or donate. To those of you that have already signed up and/or donated, I can tell you how grateful and excited we are to have your support. Thank you.
Well lots to do tomorrow, so I should try to get some rest. My next post, I am going to give some pictures that will hopefully put their size into perspective. Stay tuned for the next chapter in our 20 Fingers, 20 Toes.
Saturday, October 2, 2010
If Slow & Steadly wins the race...
It has been a few days since the last posting and things have been going at a steady pace. No large leaps, and no large set backs. But they say (whoever "they" are), that "Slow & Steady wins the race". I would like to meet these people "They" call Slow & Steady...
Ethan was started on his feeds again, which is good. They started him on a very small amount (.7 cc) every 3 hours. However, he was having too much residual (which is what is in the stomach before the next feeding that he hasn't digested yet), so they moved it to every 6 hours. They need to jump start his intestines and bowels and the longer they wait, they harder it is to get them to function properly. And his bowels are sounding a little slow right now. Its a very small amount, but very little is better than none at all. When I went in today, they have rearranged his feedings to .5 cc every 3 hours to see how he responds. With fingers crossed, he will be able to move up on the volume of his feedings soon.
He is still showing signs of swelling and they continue to give him a diarrhetic every 12 hours so that he releases the fluid. It's not an ideal situation for them to have to do this. But it's one of those things that we have to watch and wait on. I hate waiting....
So far he has been doing okay on the CPAP machine. His settings of oxygen are averaging in the 28%-50% oxygen levels depending on what is happening around him. Normal air that we all breathe is 21%. He has been going a little higher settings than what I would like to see, but none the less, he is on a less abrasive machine. Slow & Steady strike again.
Unfortunately the person that comes every day to work on Ethan and Madaline and gives them their massages (Karin), went home sick yesterday. Mommy to the rescue! I gave both Madaline and Ethan their daily massages yesterday and they both responded very well by falling asleep and relaxing their muscles. Something I'm sure they have grown very accustom to over the last couple weeks. Next week when Karin comes back, she is going to teach me some more moves that will work on Ethan's range of motion for his legs & feet (that turn out). Ethan at some point will also get a ultrasound of his hips to makes sure there is nothing serious going on. Cross your fingers, eyes and toes. We will also start to work with Madaline to get her prepped for feeds by mouth.
Onto my precious Madaline. She is doing pretty well. Last time I posted they tried to do the PICC line on her so that they would not have to keep poking her to give her some necessary medication and nutrition. Well, they gave her a day off and attempted again and was successful. Thank goodness. One less thing to keep poking her for.
She has now been off her CPAP machine for a few days and seems to be doing pretty well. She continues to just have the Nasal Cannula (like the old people), and her oxygen levels is low. No major set backs to speak of.
Since she had the infection that she had, they had to stop her feeds for the last week. Today, when I went in, they started them up again. She is at 1.2 cc every 3 hours and responding well. Her belly is soft and bowel sounds sound good. Sounds like we may be back on track.
Since both her and Ethan turned 32 weeks (gestational age) yesterday, Madaline is now able to get a bath every 3 days. Unfortunately I missed her 2nd bath yesterday, but boy did she smell good after. I don't think Ethan is at a point of being stable enough to start getting his bath. But he's a boy... Boy's can be a little smelly, right? At least for right now.
Also, the humidity in Madaline's incubator has been turned from 60% down 10% every 12 hours until it stays at 30%. They use humidity in the incubators to help develop the babies skin. Once they turn the humidity off, they can start wearing clothes. Can you imagine how small those clothes are. The nurses actually told me that the best place to shop for the babies is at Build-A-Bear. I might have to go find their halloween costumes there.
A little clarification... In the NICU, babies have 2 different "birthdays". The twins have their actual "birth"-day (September 7th), and then they have their gestational age, which goes by how far along I would be in my pregnancy. (Due date was November 27th). A lot of what happens in the NICU as far as development goes by gestational age. So when you see me write that the twins are having a 32 week birthday, it just means where they are in their development. It doesn't mean when they get older that they will have 2 birthdays and twice the presents.
In the past few days the twins are showing small signs of improvement, slow & steady. We are hopeful, but yet we try not to get so excited, so quickly. As they always say in the NICU, its a roller coaster of highs and lows. 2 steps forward, and 1 step back. I'm getting a little nauseous from this roller coaster though. But, it's like my boss (Dr. Bocchino) said, "Dont' worry, it only lasts for 18 YEARS!" Thanks Dr. Bocchino.
Side note:
Thank you to everyone who has expressed their enjoyment of reading and following our blog. It means a lot to us to know that you are all checking in to see what the latest is on the babies. Your continued love means a whole lot.
Pictures:
The top picture is our Little Superman, Ethan. They took a lot of the stuff off of him to make changes and I had only a spilt second to take a picture so his eyes are half closed.
The next picture is Madaline with her pacifier in her mouth. He passed out sucking on it with it in her mouth.
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