We have Just been doing our thing the last couple of days. Feeds are still progressing and we are up to 8ml. They have removed her oxygen tube all together. Nothing on our face now except the feeding tube.
Today Mallory got to sit in a bouncy seat! They put it right on top of her bed. It was really great to get to see her do something that she would normally be doing! I had no idea they even had bouncy seats or anything like that there. Apparently we are getting a mobile as well.
Progression this week is all based on how she adjusts to feeds and doing everything on her own. So, if I don't post ...no news is good news. What I have learned is that it is really tough and slow going on our little Mallory. Maintaining basic function while doing everything on her own is trying to her body so we are taking it slow and I am hopeful that she can get through it.
Please continue praying for our little girl to progress to full feedings and complete heart recovery.
30 May 2012
28 May 2012
Monday May 28, 2012
We talked to Dr. Chanani when we got here today about the echo she had done this morning and he said that it was about the same as the last echo from a week ago. While this seemed discouraging at first we began to ask him questions about what that means for her and us as far as the overall picture. First of all, a week with little or no improvement didn't mean anything much to him. Only time will tell when and how much Mallory will heal herself. He again brought up the philosophy of Dr. Kanter. "Let's treat the baby not the picture." The picture only tells us so much ...it is Mallory that shows us her true function.
Based on that theory, our options are more optimistic than we thought. She has to prove she can pee, which we have mastered; Breathe without the ventilator, which we are doing well with so far; and lastly be able to tolerate feeds. We are taking the feeds slow and are at 4mL an hour. This will go up 1mL every 12 hours until we get to 20ish mL. Once all 3 of these normal functions are achieved we can talk about Step Down. So if everything goes as planned we are looking at about another week in ICU.
After moving to step down that could mean another week and a half/two weeks there and then ...going HOME. We will more than likely go home with a feeding tube because she probably won't immediately adjust to bottle feeding and the stomach is the first thing to tire if the heart struggles. The feeding tube also helps her to get the nutrients she needs that she may not be able to get from bottle feeding.
Naturally we questioned how can you go home with a heart that is not fully functional? So, basically kids here are broken up into the Rule of Thirds. A Third get better, a Third maintain with medicine, and a Third require a transplant. Naturally we are cheering for the "first third."
Like most of your body the heart is an amazing organ. With the help of oral medications, basically like what an elderly person with heart failure would take, you can function just fine. Her body would self limit, but she would be close to normal. No track star but no bubble child either.
Talking about Step Down and Leaving is wonderful but also the beginnings of more uncharted roads for us to travel down. We are optimistic and again are very thankful of where we are and the hope we have for our future. Thank you again to everyone for their support and prayers ...they are being answered.
This weeks prayer request is Feed and Maintain.
We are always updating the Flickr page so there are more photos if you wanted to see:
www.flickr.com/photos/mallorykate/
Based on that theory, our options are more optimistic than we thought. She has to prove she can pee, which we have mastered; Breathe without the ventilator, which we are doing well with so far; and lastly be able to tolerate feeds. We are taking the feeds slow and are at 4mL an hour. This will go up 1mL every 12 hours until we get to 20ish mL. Once all 3 of these normal functions are achieved we can talk about Step Down. So if everything goes as planned we are looking at about another week in ICU.
After moving to step down that could mean another week and a half/two weeks there and then ...going HOME. We will more than likely go home with a feeding tube because she probably won't immediately adjust to bottle feeding and the stomach is the first thing to tire if the heart struggles. The feeding tube also helps her to get the nutrients she needs that she may not be able to get from bottle feeding.
Naturally we questioned how can you go home with a heart that is not fully functional? So, basically kids here are broken up into the Rule of Thirds. A Third get better, a Third maintain with medicine, and a Third require a transplant. Naturally we are cheering for the "first third."
Like most of your body the heart is an amazing organ. With the help of oral medications, basically like what an elderly person with heart failure would take, you can function just fine. Her body would self limit, but she would be close to normal. No track star but no bubble child either.
Talking about Step Down and Leaving is wonderful but also the beginnings of more uncharted roads for us to travel down. We are optimistic and again are very thankful of where we are and the hope we have for our future. Thank you again to everyone for their support and prayers ...they are being answered.
This weeks prayer request is Feed and Maintain.
We are always updating the Flickr page so there are more photos if you wanted to see:
www.flickr.com/photos/mallorykate/
 |
| She loves to pull out her oxygen ...and holds her own w/o it! |
27 May 2012
Holding Her Own
When we started the week I had a few goals:
Remove the breathing tube, start and maintain feedings, start treating the withdrawal and start taking medications orally, remove her urine foley, and hold my baby girl.
Overall, all of our goals were met which is huge! Yesterday we had a minor setback with feeding. We think we may have gone too fast on her feedings. We had gotten up to 10 ml per hour but it affected her tummy and therefor her breathing. She started working way to hard for her breaths so we turned off her feeding tube and took an x-ray. The upper part of her right lung had collapsed again and she had some fluid in there.
Of course all of this happened while I was holding her, but they said it was just a coincidence (I am not sure if I buy that or not, but I thank them for saying it ;)). Regardless yesterday I got to hold my baby girl for 2 hours. It was wonderful!
Today's x-ray showed that her lung was no longer collapsed... we are still very wet which they increased her lasix again so hopefully she will pee pee it all out. As I am typing this, Dustin is holding her and she is doing great.
Because of the incident yesterday, they have kept her status for a transplant at a 1A mainly due to the pause in feedings.
All in all, it has been a wonderful weekend! She is still of the ventilator, we are peeing in diapers, as of right now we are feeding (though not much and super slow!), she is taking her medication orally and we are weaning off the methadone and valium, she is sleeping in a crib and is swaddled.... and we have both been able to hold her!
Here are some pictures from this weekend!
25 May 2012
Stop ...and take a Deep Breath
Blessed, Miracle, Amazing, Unbelievable, Anxiety, Scared....
I struggle to know exactly how to describe the emotions of today. Removing Mallory's breathing tube was amazing. For the first time in three weeks I looked at her and felt like my baby girl was back with us. However today was the first day that I could see a path to bringing her home which caused a lot of anxiety and fear of going through the pain all over again.
We were told today by the transplant team that as long as our night goes well and we are still without the ventilator in the morning, she will be move from a status 1A on the transplant list to a 7. This is sort of a paused status as you don't want to fully remove a listed patient until you are certain.
We were also told that if we can stay off the ventilator and increase her feedings, our next step would be to move to the floor and out of ICU. There we could have multiple visitors, I could stay in her room and hopefully we would be looking at a path to taking her home.
Again, things that after being in the ICU for 3 weeks is completely frightening yet the most miraculous thing knowing what we were up against 3 weeks ago.
So, once again, here we are, at His mercy and His plan. But, now more than ever, I see how unbelievably lucky we are to have our faith, our families, our friends, the staff at Egleston, and our little miracle Mallory Kate.
Keep the prayers coming :)
Love to everyone.
I struggle to know exactly how to describe the emotions of today. Removing Mallory's breathing tube was amazing. For the first time in three weeks I looked at her and felt like my baby girl was back with us. However today was the first day that I could see a path to bringing her home which caused a lot of anxiety and fear of going through the pain all over again.
We were told today by the transplant team that as long as our night goes well and we are still without the ventilator in the morning, she will be move from a status 1A on the transplant list to a 7. This is sort of a paused status as you don't want to fully remove a listed patient until you are certain.We were also told that if we can stay off the ventilator and increase her feedings, our next step would be to move to the floor and out of ICU. There we could have multiple visitors, I could stay in her room and hopefully we would be looking at a path to taking her home.
Again, things that after being in the ICU for 3 weeks is completely frightening yet the most miraculous thing knowing what we were up against 3 weeks ago.
So, once again, here we are, at His mercy and His plan. But, now more than ever, I see how unbelievably lucky we are to have our faith, our families, our friends, the staff at Egleston, and our little miracle Mallory Kate.
Keep the prayers coming :)
Love to everyone.
24 May 2012
Happy 1 Month Birthday Mallory Kate :)
I have been told that I made a few people concerned today when I didn't post an update last night. That was not intentional and I am sorry if I made anyone worried. I didn't have much of an update and thought I would skip one night :)
Mallory is 1 month old today which seems crazy! However, sometimes I think she has to be at least 6 months at this point. Today also marks 3 weeks since we arrived at Children's.
Ms. Mallory is doing very well. She is passing all of her breathing trials. We have removed the urine foley and I have been changing diapers like crazy! She has lost most of the fluid...you can actually see it in her face now. We are starting to transition to oral medication. She is off of the Ativan and Fentanyl which are the sedatives that she was having withdrawl from. She is getting her withdrawl medication which seems to be working well (they are also giving that orally). She seems to be taking to the new formula they put her on however they did decide to add another tube through her nose which bypasses the stomach and goes directly to her small intestine.
The only point of agitation I think she has is her breathing tube!
The breathing tube.... Like I said she has done extremely well with her breathing trials. They are taking it slow because of the episode that we had last Friday with the collapsed lung/fluid while changing her tube. Because she was so sensitive to have the tube changed out, they are being extremely cautious with taking it out again. The plan right now is that tonight they will give her a steroid to help with inflammation she may have in her throat from the tube. They will then stop her feedings sometime early morning and remove the tube tomorrow. They do not have a timeline of when that may happen, but if all goes well Mallory Kate will be breathing on her own tomorrow!
Our nurse today said they talked about doing another echo tomorrow to take a look again at her heart function. I haven't talked to the doctors about what any of this means. It seems that we are moving in the direction of hopefully leaving the ICU and going to what the call the floor or step down. But I am sure that all depends on how her heart looks and how she does with removing the breathing tube.
Tomorrow is a big day so I will once again ask for your prayers tonight to help our Mallory Kate through everything. Thanks so much and I will share more news tomorrow.
Mallory is 1 month old today which seems crazy! However, sometimes I think she has to be at least 6 months at this point. Today also marks 3 weeks since we arrived at Children's.
Ms. Mallory is doing very well. She is passing all of her breathing trials. We have removed the urine foley and I have been changing diapers like crazy! She has lost most of the fluid...you can actually see it in her face now. We are starting to transition to oral medication. She is off of the Ativan and Fentanyl which are the sedatives that she was having withdrawl from. She is getting her withdrawl medication which seems to be working well (they are also giving that orally). She seems to be taking to the new formula they put her on however they did decide to add another tube through her nose which bypasses the stomach and goes directly to her small intestine.
The only point of agitation I think she has is her breathing tube!
The breathing tube.... Like I said she has done extremely well with her breathing trials. They are taking it slow because of the episode that we had last Friday with the collapsed lung/fluid while changing her tube. Because she was so sensitive to have the tube changed out, they are being extremely cautious with taking it out again. The plan right now is that tonight they will give her a steroid to help with inflammation she may have in her throat from the tube. They will then stop her feedings sometime early morning and remove the tube tomorrow. They do not have a timeline of when that may happen, but if all goes well Mallory Kate will be breathing on her own tomorrow!
Our nurse today said they talked about doing another echo tomorrow to take a look again at her heart function. I haven't talked to the doctors about what any of this means. It seems that we are moving in the direction of hopefully leaving the ICU and going to what the call the floor or step down. But I am sure that all depends on how her heart looks and how she does with removing the breathing tube.
Tomorrow is a big day so I will once again ask for your prayers tonight to help our Mallory Kate through everything. Thanks so much and I will share more news tomorrow.
22 May 2012
Drug Withdrawl
Drug withdrawl... Something I never thought I would have to go through with my daughter let alone my newborn. There is nothing more painful than to see your child in pain. She had a rough night last night and this morning. She was extremely irritable and impossible to comfort. Any forward progress had been paused until we can get her through this.
Our day did improve once she got her first dose of methadone and she slept quietly for the afternoon. Her blood pressure, heart rate and respiratory rate were great. She finally seemed peaceful for the first time in a couple days.
While sleeping they decided to do a 30 minute breathing trial and she did wonderful!
Of course once I was leaving tonight they were about to take her stitches out from ECMO, which I am sure she did not respond well to, but hopefully she settles again!
We also started feeding her a very sensitive formula called Pregestimil and she was doing fairly well with it!
If she does well through the night, she will be off the 2 sedation drips and maybe we will do another breathing trial tomorrow! So after a long morning, our day actually turned out really well.
I did get another visit from Dr. Kanter today. He seemed very pleased with her kidney function. He wanted me to know that the transplant team still feels that if we were to get a heart, we would pass on it. He also said we still have the Berlin Heart, but he will probably send it back next week if we continue down this path. And, he will be on vacation next week. My first thought was 1) Dr. Kanter can't take vacation! 2) we can't send the Berline Heart back.....!! But, I will take it as a good sign that he is confident returning it because we wouldn't need it!!
Oh yeah, and, Dr. Cuadrado walked by Mallory's room today after being out all week last week and gave me a thumbs up! (it's the little things :))
Our day did improve once she got her first dose of methadone and she slept quietly for the afternoon. Her blood pressure, heart rate and respiratory rate were great. She finally seemed peaceful for the first time in a couple days.
While sleeping they decided to do a 30 minute breathing trial and she did wonderful!
Of course once I was leaving tonight they were about to take her stitches out from ECMO, which I am sure she did not respond well to, but hopefully she settles again!
We also started feeding her a very sensitive formula called Pregestimil and she was doing fairly well with it!
If she does well through the night, she will be off the 2 sedation drips and maybe we will do another breathing trial tomorrow! So after a long morning, our day actually turned out really well.
I did get another visit from Dr. Kanter today. He seemed very pleased with her kidney function. He wanted me to know that the transplant team still feels that if we were to get a heart, we would pass on it. He also said we still have the Berlin Heart, but he will probably send it back next week if we continue down this path. And, he will be on vacation next week. My first thought was 1) Dr. Kanter can't take vacation! 2) we can't send the Berline Heart back.....!! But, I will take it as a good sign that he is confident returning it because we wouldn't need it!!
Oh yeah, and, Dr. Cuadrado walked by Mallory's room today after being out all week last week and gave me a thumbs up! (it's the little things :))
21 May 2012
Monday May 21, 2012
Today we started weaning Mallory's ventilator. They got her rate to the lowest setting and tonight they plan on starting breathing trials where they will shut off most of the ventilator settings and see how she reacts. I believe they will leave them off for different periods of time and will try this multiple times. If she does well, they are planning on removing her ventilator Wednesday!
They also tried to feed her formula again. She did not react well to it. Her oxygen level in her stomach went really low, her face turned red, heart rate went through the roof. They turned off the feeding and we hope to try again tomorrow. It was a scary moment for me that I hope we don't have to go through again.
We are peeing very well! I actually noticed a difference when I saw her today. It will probably still be another couple days before she is back to normal, but she is doing really well. They are hoping to take her off the diuretic drip and go to 2 doses a day which will help remove the urine foley and we can go to just changing diapers!
We have almost been here for 3 weeks, and 3 weeks of pain medication has taken its toll on Mallory. She is starting to show signs of withdrawl as we try to wean her medication. They are starting to treat her for that with the goal of removing the drips and giving her methadone and valium in doses throughout the day which will help treat the withdrawl. It is a crazy process that we can hopefully get her through very quickly.
We also did another echo this morning. She again showed slight improvement and for now we are still passing on transplant if one came available!! Dr. Kanter said today that he believes the echo picture is not showing the same picture that Mallory shows. Mallory appears to be doing better than the echo so at this point we need to follow the baby and not the picture.
Our goals for the week... Remove the breathing tube, start and maintain feedings, successfully treat the withdrawl and start taking this mediation orally so we can remove some of the IVs, remove her urine foley!
And
HOLD MY BABY GIRL AGAIN!
They also tried to feed her formula again. She did not react well to it. Her oxygen level in her stomach went really low, her face turned red, heart rate went through the roof. They turned off the feeding and we hope to try again tomorrow. It was a scary moment for me that I hope we don't have to go through again.
We are peeing very well! I actually noticed a difference when I saw her today. It will probably still be another couple days before she is back to normal, but she is doing really well. They are hoping to take her off the diuretic drip and go to 2 doses a day which will help remove the urine foley and we can go to just changing diapers!
We have almost been here for 3 weeks, and 3 weeks of pain medication has taken its toll on Mallory. She is starting to show signs of withdrawl as we try to wean her medication. They are starting to treat her for that with the goal of removing the drips and giving her methadone and valium in doses throughout the day which will help treat the withdrawl. It is a crazy process that we can hopefully get her through very quickly.
We also did another echo this morning. She again showed slight improvement and for now we are still passing on transplant if one came available!! Dr. Kanter said today that he believes the echo picture is not showing the same picture that Mallory shows. Mallory appears to be doing better than the echo so at this point we need to follow the baby and not the picture.
Our goals for the week... Remove the breathing tube, start and maintain feedings, successfully treat the withdrawl and start taking this mediation orally so we can remove some of the IVs, remove her urine foley!
And
HOLD MY BABY GIRL AGAIN!
20 May 2012
Why this was the best Birthday
I am sitting beside Mallory and Jess on my birthday in this quiet, dimly lit, thankfully uneventful ICU room. Although I have learned a lot in 32 years …I think that I have learned more about myself, my family, my friends, and my faith in the last 17 days than at any other point in my life. There is one thing that I have learned that I wanted to share with you.
I have learned to be grateful.
Grateful that God gives us all gifts and those here at Egleston and Children's have the gift of compassion and an amazing understanding of the heart and medicine. I have also learned that no matter what your job is, your attitude and outlook on life affects others more than you think. For that I am also grateful.
I am truly grateful to have gone through this experience with Jess and Madison and our families. I have learned more about love in the past 17 days than in my entire life beforehand.
I have also learned to rely on God to see me through anything – this is something that I’ve known to be important, but never understood until now. For that, I am grateful.
I am grateful that even in these difficult times there is joy to be found. It is the decision to focus on the positive aspects of our existence and to be content with our circumstances that allows us to see beauty in things we normally take for granted.
I am thankful that I have learned that gratitude should be a habit.
These are not the circumstances I would want for anyone to be in …but being forced to be a strong, unified front has brought Jess and I incredibly closer to each other. For that I am so very grateful.
I am grateful that I have realized that I cannot always fix the problem but I can be there through it.
I'm grateful I have been able to see just how much good there is in life, no matter who you are. Finding good is possible, if you’re willing to look hard enough and …look at the obvious. These are the things that you should be the most grateful for!
I am grateful that I now realize you never know what kind battle someone is fighting so be kind to everyone.
I’m grateful that I have learned that being vulnerable is actually a sign of strength,
I’m grateful that I have everything I need – food, clothes, shelter…
I’m grateful that there are people who care about me, and some I’ve never met, that are thinking and praying for Mallory and my family.
Most importantly I am grateful that God has a plan. A plan I do not know or understand. But he is in control which gives us all a sense that everything will be alright.
19 May 2012
Saturday May 19, 2012
In general today was status quo. We had a good night and all our numbers today were good. The goal for today was RESTING and as we have all gotten used to cheering for ...PEEING. Good news is that we were negative for the day yesterday as far as our pee goes (aka we peed out more fluid than we took in)
I talked to Dr. Deshpande and he was content with the progress of her lungs from yesterday and said we would probably just be waiting 2-3 days for this fluid to come off and then we could look at her heart again. I spent the morning with Mallory, who was awake a lot and looking around which was nice. She seemed alert but calm and peaceful. Unfortunately there were a few procedures on other kids today so I got booted for a few hours. I took some time in the garden to look back through some photos of this journey we have been on.
Good news is that when Jess and Madison showed up after nap time we got to spend it all with Mallory. Madison got to use some of Mallory's "beads of courage" to make her own necklace today which was great. She now has her own necklace like Mallory's that she can keep with her.
We have become used to accepting good and bad news ...it is the waiting that can begin to wear on you. Days like this are great as we make progress and we have to focus on even the smallest improvements. I/we have to remember that any day in the right direction is a good day. Things take time and God knows the plans he has for Mallory and our family.
I talked to Dr. Deshpande and he was content with the progress of her lungs from yesterday and said we would probably just be waiting 2-3 days for this fluid to come off and then we could look at her heart again. I spent the morning with Mallory, who was awake a lot and looking around which was nice. She seemed alert but calm and peaceful. Unfortunately there were a few procedures on other kids today so I got booted for a few hours. I took some time in the garden to look back through some photos of this journey we have been on.
Good news is that when Jess and Madison showed up after nap time we got to spend it all with Mallory. Madison got to use some of Mallory's "beads of courage" to make her own necklace today which was great. She now has her own necklace like Mallory's that she can keep with her.
We have become used to accepting good and bad news ...it is the waiting that can begin to wear on you. Days like this are great as we make progress and we have to focus on even the smallest improvements. I/we have to remember that any day in the right direction is a good day. Things take time and God knows the plans he has for Mallory and our family.
18 May 2012
Friday May 18, 2012
We had a little bit of a setback today, but we will overcome it!
This morning they realized that Mallory's breathing tube had a leak so they had to giver her a new one. She did not do very well at all with changing out her tube and her vitals were all over the place. I think she gave them a little bit of a scare. In the process they thought her right lung had collapsed and spent a majority of the day trying to get it to inflate again. She struggled most of the day with her respirator.
Finally after many X-rays they did an echo and realized that it had not collapsed but instead had a ton of fluid that was causing her issues. They inserted a tube into her lung to help drain the fluid and were able to drain 70 mls! Her X-rays are still showing fluid so hopefully more will drain through the night.
Our peeing has definitely picked up today though! We were finally negative for the day meaning we released more fluid that we took in. We also started to give her feedings today hich she has taken very well.
I am hopeful that we will have improvements to her lungs once all of the fluid is gone and if we can have a few more negative days, we will be looking much better!
Here is a picture of my little puffy girl!
This morning they realized that Mallory's breathing tube had a leak so they had to giver her a new one. She did not do very well at all with changing out her tube and her vitals were all over the place. I think she gave them a little bit of a scare. In the process they thought her right lung had collapsed and spent a majority of the day trying to get it to inflate again. She struggled most of the day with her respirator.
Finally after many X-rays they did an echo and realized that it had not collapsed but instead had a ton of fluid that was causing her issues. They inserted a tube into her lung to help drain the fluid and were able to drain 70 mls! Her X-rays are still showing fluid so hopefully more will drain through the night.
Our peeing has definitely picked up today though! We were finally negative for the day meaning we released more fluid that we took in. We also started to give her feedings today hich she has taken very well.
I am hopeful that we will have improvements to her lungs once all of the fluid is gone and if we can have a few more negative days, we will be looking much better!
Here is a picture of my little puffy girl!
17 May 2012
Pee Baby Pee :)
It is funny the things you pray about. Mallory's heart seems to still be doing okay. We have removed one of her medications completely and came down on another to only support her kidney function. She is currently only on one medication for her heart function which I consider a success.
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Now it is time to switch gears a little bit. We are still taking on more fluid than we are releasing each day which could cause lung problems. We really need her to pick up on her peeing. We do have other options including putting her on a machine for dialysis, but we would all prefer to not have another procedure and to have her do this onher own.
We are still doing well and the support is again overwhelming. Not ony do we have wonderful family and friends supporting us, but the staff at Egleston is unbelievable. We have nurses following our journey and reading our blog. They have been so wonderful to our family and we will forever be indebted to each and everyone of them. Our family has now expanded and through this we have seen the support that we have both new and old. Mallory is one lucky girl to have you all!
So for tonight, pee baby pee :)
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Now it is time to switch gears a little bit. We are still taking on more fluid than we are releasing each day which could cause lung problems. We really need her to pick up on her peeing. We do have other options including putting her on a machine for dialysis, but we would all prefer to not have another procedure and to have her do this onher own.
We are still doing well and the support is again overwhelming. Not ony do we have wonderful family and friends supporting us, but the staff at Egleston is unbelievable. We have nurses following our journey and reading our blog. They have been so wonderful to our family and we will forever be indebted to each and everyone of them. Our family has now expanded and through this we have seen the support that we have both new and old. Mallory is one lucky girl to have you all!
So for tonight, pee baby pee :)
16 May 2012
Not as Crappy :)
Today we had another good day. The doctors did an echo this morning and actually saw an improvement in her function. Although a small improvement and we still have a sick heart, she actually made a step forward in this battle and for that I thank each and every one of you.
When Dr. Kanter came in today he told me about the improved function. He said, well although still crappy, we aren't as crappy as we were :). Love him for that honesty and I will take it all day long!
It was a good day.. again a quiet day. It is funny how the little things start to matter so much to you. Our nurse today, MaryBeth asked if I wanted to change Mallory's diaper. Something so simple made me so terrified. She then had me help her move Mallory further up her bed and for a split second it felt like I held her. Again, the little things made me feel like a mom again.
As I was leaving to go home, Dr. Mayle, the director of the Heart transplant program, came in to talk about the good news with the echo. He talked about the question I kept having in the back of my head... If we were improving, even slightly, what happens if we got the call that a heart was available. For the first time, he actually told me that today, we would pass on a new heart! I wanted to dance around the room. Although this could change tomorrow, today we didn't need the transplant. It was my best day thus far.
Tonight I went home. We had a great day today and tomorrow is a new day. We have made a little step forward :)
Keep the prayers coming because Mallory is our little miracle and I owe that to every person out there thinking and praying for our little girl!
When Dr. Kanter came in today he told me about the improved function. He said, well although still crappy, we aren't as crappy as we were :). Love him for that honesty and I will take it all day long!
It was a good day.. again a quiet day. It is funny how the little things start to matter so much to you. Our nurse today, MaryBeth asked if I wanted to change Mallory's diaper. Something so simple made me so terrified. She then had me help her move Mallory further up her bed and for a split second it felt like I held her. Again, the little things made me feel like a mom again.
As I was leaving to go home, Dr. Mayle, the director of the Heart transplant program, came in to talk about the good news with the echo. He talked about the question I kept having in the back of my head... If we were improving, even slightly, what happens if we got the call that a heart was available. For the first time, he actually told me that today, we would pass on a new heart! I wanted to dance around the room. Although this could change tomorrow, today we didn't need the transplant. It was my best day thus far.
Tonight I went home. We had a great day today and tomorrow is a new day. We have made a little step forward :)
Keep the prayers coming because Mallory is our little miracle and I owe that to every person out there thinking and praying for our little girl!
15 May 2012
Tuesday, May 15, 2012
Mallory Kate is 3 weeks old today. Part of me can't believe she has been with us for 3 weeks. The other part of me feels like it has been months.
Today's main focus was getting Mallory to pee. She is starting to retain fluid again and becoming puffy which makes for a lot more work for her heart. Yesterday she peed only 4mls of fluid, today we are at 40+ which is a huge improvement, still not enough to bring down her edema, but we are on the right track.
She is starting to wake up some tonight and move around a bit more. It still has had no effect other vitals though.
All-in-all Mallory is doing well. Still no huge improvements in her function, but we are holding our own on solely medication and I am so proud of her for that. Now we just need to regain the function in her heart which may take a while, but that is okay by me!
We did have a visit from Dr, Kanter today. He agrees that it is good that she is doing well off of ECMO and holding her own. If she starts doing worse, we do have the Berlin Heart here so that is always an option. And, we are still listed as a status 1A on the transplant list, so again, still an option.
Tonight was my first night here alone. Dustin went home today to be with Madison and go back to work tomorrow. If we have a quiet day tomorrow I will probably also go home for the night and drive back the next morning... Try to get to a normalcy with all of this.
We will see what tomorrow brings.
Here is a picture without the ECMO canulas in our neck!
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My flesh and my heart may fail but God is the strength of my heart and my portion forever.
Psalm 73:26
Today's main focus was getting Mallory to pee. She is starting to retain fluid again and becoming puffy which makes for a lot more work for her heart. Yesterday she peed only 4mls of fluid, today we are at 40+ which is a huge improvement, still not enough to bring down her edema, but we are on the right track.
She is starting to wake up some tonight and move around a bit more. It still has had no effect other vitals though.
All-in-all Mallory is doing well. Still no huge improvements in her function, but we are holding our own on solely medication and I am so proud of her for that. Now we just need to regain the function in her heart which may take a while, but that is okay by me!
We did have a visit from Dr, Kanter today. He agrees that it is good that she is doing well off of ECMO and holding her own. If she starts doing worse, we do have the Berlin Heart here so that is always an option. And, we are still listed as a status 1A on the transplant list, so again, still an option.
Tonight was my first night here alone. Dustin went home today to be with Madison and go back to work tomorrow. If we have a quiet day tomorrow I will probably also go home for the night and drive back the next morning... Try to get to a normalcy with all of this.
We will see what tomorrow brings.
Here is a picture without the ECMO canulas in our neck!
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My flesh and my heart may fail but God is the strength of my heart and my portion forever.
Psalm 73:26
Monday, May 14, 2012
We have now been off ECMO for 15 hours. Mallory seems to be holding her own. Every hours is like sitting on pins and needles waiting to see how she responds.
She is on a lot of sedation and still is under paralysis. They want to keep her that way through most of the night to give her heart a chance to adjust before having to keep up with her body. They hope to wean her off the paralization tomorrow to see how her heart responds.
Her lungs seem to be functioning well and she is down to 60% oxygen from 100% after the procedure today.
We are still a sick little girl and they are compensating her with medication but, all in all, she is doing very well. The next day will hopefully tell us a lot.
Dr. Cuadrado (aka Dr. Doom) is out this week. The nurse practitioner took a picture of her "today I will prove Dr. Cuadrado wrong" sign and sent him a text from Mallory asking how he thought she looked off of ECMO. He responded immediately saying she looked great off of ECMO and was glad she proved him wrong!! I told you he was human :)
More updates to come tomorrow. Thank you for all of your continued support. We will never be able to thank you all enough.
She is on a lot of sedation and still is under paralysis. They want to keep her that way through most of the night to give her heart a chance to adjust before having to keep up with her body. They hope to wean her off the paralization tomorrow to see how her heart responds.
Her lungs seem to be functioning well and she is down to 60% oxygen from 100% after the procedure today.
We are still a sick little girl and they are compensating her with medication but, all in all, she is doing very well. The next day will hopefully tell us a lot.
Dr. Cuadrado (aka Dr. Doom) is out this week. The nurse practitioner took a picture of her "today I will prove Dr. Cuadrado wrong" sign and sent him a text from Mallory asking how he thought she looked off of ECMO. He responded immediately saying she looked great off of ECMO and was glad she proved him wrong!! I told you he was human :)
More updates to come tomorrow. Thank you for all of your continued support. We will never be able to thank you all enough.
14 May 2012
Clamp and PRAY!
We just finished with our doctor's rounds this morning and it was confirmed that today we will clamp the ECMO machine for an hour to evaluate her function one more time. They are going to spend the morning getting her ready to be on her own by increasing some medications.
The plan is to clamp her for 1 hour while monitoring her vitals and gases. If all goes well, she will come off ECMO today! Dr. Kanter will repair the site on her neck where the cannulas are and we will see how her heart functions on its own.
Like Dustin said yeaterday in his update, we are still dealing with a sick heart, but I truely feel that giving Mallory the opportunity to show us her strength is a much improved option. The first 24 hours will be very telling to what our future holds, but possibly not going to the Berlin Heart at all is such a blessing. We are unsure of when today this will happen, but as soon as I know more, I will share it with all of you.
I want to thank each and everyone one of you for your outpouring support for Mallory Kate and our family. I ask you to have her in your thoughts and prayers today as we test her on her own once again. I truly believe that it was through all of you and your prayers that we are even at this point today so I am going to continue to ask you to help us through the next 24 hours and beyond until we can bring our baby girl home.
The plan is to clamp her for 1 hour while monitoring her vitals and gases. If all goes well, she will come off ECMO today! Dr. Kanter will repair the site on her neck where the cannulas are and we will see how her heart functions on its own.
Like Dustin said yeaterday in his update, we are still dealing with a sick heart, but I truely feel that giving Mallory the opportunity to show us her strength is a much improved option. The first 24 hours will be very telling to what our future holds, but possibly not going to the Berlin Heart at all is such a blessing. We are unsure of when today this will happen, but as soon as I know more, I will share it with all of you.
I want to thank each and everyone one of you for your outpouring support for Mallory Kate and our family. I ask you to have her in your thoughts and prayers today as we test her on her own once again. I truly believe that it was through all of you and your prayers that we are even at this point today so I am going to continue to ask you to help us through the next 24 hours and beyond until we can bring our baby girl home.
13 May 2012
Sunday May 13, 2012
I find that I now live in a world where emotions change from hour to hour, which makes me nervous about writing this update. The joy of small miracle I just watched has me in amazement. I say little, not to diminish the power of God, but to let you know while still having a sick heart today was an unexpected day. Jess was home with Madison while she was napping and I had come up to the hospital. I had no idea but they came in to do an echo of her heart. Neither of us have been in the room while any procedures have been done so this was uncharted territory for me. After the echo, the Cardiologist Dr. Maher seemed hopeful that there was some improvement worthy of testing. They decided to clamp her off from the ECMO letting her own heart do all the work for a while.
He said clamp her off for 30 minutes and check her gases at 15 minutes and 30 minutes. Her gases are levels of CO2, O2 and her pH level. The first HOUR, which turned out to only be 15 minutes came and went. Gases ok. Not bad but ok. The next 15 minutes actually turned into about 25. Her next gases came back Amazing (even better then on ECMO)
Dr. Maher came back in and was pleased with the numbers and that her heart rate, blood pressure, etc stayed constant and at good levels. Not being used to getting news like this and especially something that seemed that good to me I asked a blunt question. "Dr. Maher you seem to have good bedside manner and Dr. Caudrado, well we all know where I am going here …what are we honestly looking at here? To be more specific on a 1 to 10 what's going on"
He said that the improvement shows that her heart is limping along but could possibly limp along on its own. He wants to try to clamp her off again tomorrow morning and if we get the same results ween her off ECMO all together tomorrow. They have a couple of kids in here in the same situation. The don't need to be on ECMO or a Berlin Heart. So, if this happens tomorrow then it means she has the time on her own for her heart to heal while we wait for a transplant. Not being on the Berlin would be amazing since there is no going back from the Berlin. This gives us yet another chance for God and time to heal her before any other measures are taken. He said we are not out of the woods by far. If 0 was no heart activity and an 8,9,10 was normal we were a 3. But again a 3 can get you by if not get better.
I can only imagine that this was a great MOTHER'S DAY for Jess. And speaking of Jess, I want you all to know as well as her that she is the most amazing mother. She has a strength that surpasses most and a loving compassion for her girls and family that is beyond anything I could ever imagine. She is an amazing mother to all 3 of us. We love her and thank God for her. We will take the rest of this day to be thankful to God for the news and mother he has given us.
12 May 2012
Saturday May 12, 2012
Today was another quiet day. This morning we found out that they may push her surgery for the Berlin Heart to Tuesday. She is doing well on her new ECMO, her fingers are looking much better so they are thinking of giving her at least another day. There is another child in the ICU that has been needing surgery that they may do Monday instead of Mallory.
To me, it is another day that we can try and heal her heart before she has surgery and there is no going back.
We are still hopeful and praying daily that her heart improves and we do not need to go down the transplant path.
They will do another echo to test her function prior to her surgery and once we know more we will let everyone know.
Because everything has been quiet last night and today,we decided it was time to spend our first night at home since this all began. We picked up Madison and had a wonderful night with her. It was so nice to spend time with her... We didn't want to put her to bed!
The hospital gave us a baby doll for Madison that has an IV in her arm and a bag of other supplies so that we can show her everything that is helping to make her better. She has started to ask a lot more questions so we have decided to take her to see Mallory tomorrow. It is probably time for her to see her sister especially because we could be there for a while. Plus it is mother's day and I would love to be with both of my girls :)
To me, it is another day that we can try and heal her heart before she has surgery and there is no going back.
We are still hopeful and praying daily that her heart improves and we do not need to go down the transplant path.
They will do another echo to test her function prior to her surgery and once we know more we will let everyone know.
Because everything has been quiet last night and today,we decided it was time to spend our first night at home since this all began. We picked up Madison and had a wonderful night with her. It was so nice to spend time with her... We didn't want to put her to bed!
The hospital gave us a baby doll for Madison that has an IV in her arm and a bag of other supplies so that we can show her everything that is helping to make her better. She has started to ask a lot more questions so we have decided to take her to see Mallory tomorrow. It is probably time for her to see her sister especially because we could be there for a while. Plus it is mother's day and I would love to be with both of my girls :)
Berlin Heart
The ECMO is not a machine that Mallory can be on for an extended period of time. Although I am still hoping for a miracle that she will make a huge improvement to the function of her heart, to bridge the gap between ECMO and a transplant, Mallory will need the assistance of a VAD device called a Berlin Heart.
This functions very similar to the ECMO in that it supplements her heart function, but instead of a continuous circuit flow, the Berlin pumps blood very similar to our hearts. It is also attached to the heart itself.
Once a patient gets the Berlin Heart, it is permanent and transplant is the only option at that point.
The Berlin Heart has been used here at Egleston for a few years, but it was just recently approved by the FDA. Mallory would be the second baby to use this device here since FDA approval.
Today they brought in one for us to see. It is actually much smaller than I thought it would be. They think she will only need one attached to her left side, but there is the possibility that they would need one for the right side too.
The hope is that she can then have her ventilator removed, potentially be fed and we could actually hold her!
I cannot even express what I would do to just hold my baby girl again.
Here is a website with a lot more information:
http://www.berlinheart.de/index.php/home
The plan right now is to have the procedure on Monday morning.
Friday May 11, 2012
This morning during doctor rounds, they were concerned about her X-rays. Everything had looked great yesterday and today it looked like her left atrium was swollen. It could have been cause by our episisode yesterday in switching out the EMCO or our brief shut-down. There was a chance that it was from neither of those and something we would need to address.
They did an echo of the heart and it looked that there was a lot of pressure in the left side which was causing there to be extra fluid in the lungs. This in turn could cause the lungs to become sick. With our upcoming surgeries, we need the least amount of fluid and health lungs.
Our only option was another procedure done in the cath lab called a balloon atrial septostomy. They would go in through her femoral artery into her heart. There is a hole between the left and right atrium that is open in infants. After time, this hole closes, and Mallory's already had. They wanted to go in and reopen that hole to relieve the pressure and help her lungs.
Of course there are a lot of risks with this procedure especially in a patient on ECMO, but we really had no other options. The procedure could take up to 4 hours. I believethe hardest part was that they had to wheel Mallory down the hall with all of the machines, which was crazy to watch!
Once again we were in a waiting room...
After only 20 minutes, the nurse came back in and said they were successful and that it would only be a few more minutes.
One thing I have learned this past week is that although only 2 weeks old, Mallory has more strength than adults that I know. She is such an amazing baby!
Tonight is another quiet night. She's peaceful and resting. Quiet nights are great nights :)
Her fingers have made huge improvements. I see a big difference in her middle and pointer finger. Her ring finger is also looking better but still has more purple than the others.
10 May 2012
Listing Mallory Kate
We spent a lot of time over the past few days talking through transplantation. We caused ourselves a lot of agony thinking through what to do. We wanted to make the right decision for her. The conclusion we came to is we cannot predict the future and medically we cannot control anything. What we can control is our family. We can love her unconditionally and have faith that the rest will work itself out.
At 3:00 pm Mallory Kate was officially listed as a 1A on the heart transplant list.
Dr. Kanter is the Chief of Pediatric Cardiac Surgery. He has been Mallory's doctor since we arrived at Egleston. He is the one who put her on ECMO and will be the one who does her heart transplant. Although we do not talk to him daily, he is always in the background making the decisions on Mallory's care. He is truly a wonderful doctor and people we have spoken to cannot say enough about him.
He came in to talk to us today once she was listed. He looked me in the eye and with complet confidence told me that at no time have we given up. Before we even accept a heart we will test her function to ensure that transplant is our only option. We will hit bumps in the road and we need to trust him.
I trust him completely.
I am at peace with our path and our decision.
At 3:00 pm Mallory Kate was officially listed as a 1A on the heart transplant list.
Dr. Kanter is the Chief of Pediatric Cardiac Surgery. He has been Mallory's doctor since we arrived at Egleston. He is the one who put her on ECMO and will be the one who does her heart transplant. Although we do not talk to him daily, he is always in the background making the decisions on Mallory's care. He is truly a wonderful doctor and people we have spoken to cannot say enough about him.
He came in to talk to us today once she was listed. He looked me in the eye and with complet confidence told me that at no time have we given up. Before we even accept a heart we will test her function to ensure that transplant is our only option. We will hit bumps in the road and we need to trust him.
I trust him completely.
I am at peace with our path and our decision.
Thursday May 10, 2012
Today was another rough day.
I'm sure that you are now realizing the emotional roller coaster that we have been on. Good days followed by bad days.
Today the echo test was not favorable. When they tested her with the nitric oxide, she didn't respond any better and this time her blood pressure did drop and she really struggled through the 5 minutes. We are still hoping for a miracle, but they want a decision on the transplant today so that if we choose to move forward, we would list her today.
We had a couple other scary moments tonight. They had to change out her ECMO today because it is getting clots. She also has started to develop some discoloration in her right fingers... I think they refer to it as dusky. I would say they look awful. They are purple and look like they have not had any blood flow - again a side effect of ECMO.
The change went well but the machine itself was having issues. They had to add a lot of volume to stabilize the machine and Mallory. There was a point where the tech was standing holding the cannulas to keep them stable in her neck. It was very scary but everything eventually stabilized.
Later that evening, the nurse noticed some water on the floor. No sooner than her pointing it out to the tech on the ECMO machine, he was running to the other side, alarms were going off and he was physically cranking the machine to keep it running. I was terrified but Mallory was okay. He blood pressure stayed stable. Her heart rate did increase a bit, but I am sure that was because within minutes there were 15 people in her room.
I'm sure that you are now realizing the emotional roller coaster that we have been on. Good days followed by bad days.
Today the echo test was not favorable. When they tested her with the nitric oxide, she didn't respond any better and this time her blood pressure did drop and she really struggled through the 5 minutes. We are still hoping for a miracle, but they want a decision on the transplant today so that if we choose to move forward, we would list her today.
We had a couple other scary moments tonight. They had to change out her ECMO today because it is getting clots. She also has started to develop some discoloration in her right fingers... I think they refer to it as dusky. I would say they look awful. They are purple and look like they have not had any blood flow - again a side effect of ECMO.
The change went well but the machine itself was having issues. They had to add a lot of volume to stabilize the machine and Mallory. There was a point where the tech was standing holding the cannulas to keep them stable in her neck. It was very scary but everything eventually stabilized.
Later that evening, the nurse noticed some water on the floor. No sooner than her pointing it out to the tech on the ECMO machine, he was running to the other side, alarms were going off and he was physically cranking the machine to keep it running. I was terrified but Mallory was okay. He blood pressure stayed stable. Her heart rate did increase a bit, but I am sure that was because within minutes there were 15 people in her room.
09 May 2012
Wednesday May 9, 2012
Today was a good day. It was once again a quiet day. We were negative all day. But the best news was that we did an echo of her heart and the doctors saw improvement. They turned off the ECMO machine for 5 or so minutes. Her blood pressure remained stable.
Still a long way to go, but improvement. It was enough to stay our course on the ECMO for now.
Her lungs struggled a little bit so they want to test her again tomorrow while using a different ventilator that should help.
Still a long way to go, but improvement. It was enough to stay our course on the ECMO for now.
Her lungs struggled a little bit so they want to test her again tomorrow while using a different ventilator that should help.
Volume and Negative
There are many words and phrases that have become a part of our everyday that will never mean the same thing to us again.
Volume and negative are two examples.
Volume - anytime they have to add fluid to the ECMO machine it increases the volume. We don't like to have to add fluid, but the machine and Mallory dictate that, not us. The main reason we don't like to add volume is because we want Mallory to be negative.
Negative - we want Mallory to get rid of more fluid every day than she takes in. The less extra fluid she has in her body and cells the better.
"a dry heart is a happy heart"
Today Dr. Doom threatened that if we were not negative by the end of the day, he was going to shoot the ECMO tech.
Volume and negative are two examples.
Volume - anytime they have to add fluid to the ECMO machine it increases the volume. We don't like to have to add fluid, but the machine and Mallory dictate that, not us. The main reason we don't like to add volume is because we want Mallory to be negative.
Negative - we want Mallory to get rid of more fluid every day than she takes in. The less extra fluid she has in her body and cells the better.
"a dry heart is a happy heart"
Today Dr. Doom threatened that if we were not negative by the end of the day, he was going to shoot the ECMO tech.
08 May 2012
Tuesday May 8th, 2012
Any day that we have to spend with the transplant team is a hard day. Today we had to meet with a psychologist, our case manager, and a social worker. We agreed to go ahead and go through the qualification process so that if/when we make the decision on the transplant, we have all of the admin stuff complete.
We also got a lot of our questions answered. Every time Dustin and I talked about transplant we always centered around her quality of life. What could she do, what couldn't she do?
Then there are the life questions every parent thinks about - how would this affect Madison, how do we financially handle all of this, what about caregivers, what about work.
What we found out was reassuring. There isn't much she could not do. The one sport she should stay away from would be football so my hope that Mallory would be the next VOLS superstar is now a fantasy. :( Dang!!
Yes, she most likely will be sicker for longer periods of time. Madison would come home with a cold for 2 days, Mallory would be out for a week.
Surprisingly we would have a couple positives being a newborn. Mallory can accept any heart no matter what the blood type because her heart is so young her body wouldn't know. Also, there is less rejection with a newborn.
We would have a higher rate of infection though.
Going through making this decision has been the hardest thing I hope to ever have to do. And talking about it at times makes me feel like we have given up... And I'm not ready to give up.
On a positive note, Mallory has had a good day - it was a quiet day which means a good day.
We also got a lot of our questions answered. Every time Dustin and I talked about transplant we always centered around her quality of life. What could she do, what couldn't she do?
Then there are the life questions every parent thinks about - how would this affect Madison, how do we financially handle all of this, what about caregivers, what about work.
What we found out was reassuring. There isn't much she could not do. The one sport she should stay away from would be football so my hope that Mallory would be the next VOLS superstar is now a fantasy. :( Dang!!
Yes, she most likely will be sicker for longer periods of time. Madison would come home with a cold for 2 days, Mallory would be out for a week.
Surprisingly we would have a couple positives being a newborn. Mallory can accept any heart no matter what the blood type because her heart is so young her body wouldn't know. Also, there is less rejection with a newborn.
We would have a higher rate of infection though.
Going through making this decision has been the hardest thing I hope to ever have to do. And talking about it at times makes me feel like we have given up... And I'm not ready to give up.
On a positive note, Mallory has had a good day - it was a quiet day which means a good day.
07 May 2012
Monday May 7, 2012
Today was another tough day. Mallory is having a lot of arrhythmias (irregular heartbeats) and they are happening much more often. Her BNP increased again to 600 although her troponin had gone down to 9. She has more edema meaning she is carrying a lot of extra fluids.
As a result, today we met with the transplant team to discuss our options.
Today I went through so many emotions... Anger about why this was happening to us. Fear of the medical unknown on what Mallory's life would be like. Happiness that we even have transplant as an option. Sadness for my little Mallory having to endure all of this at 2 weeks old.
Dustin and I sat very quiet as they talked about a heart transplant. Again, I focused on numbers.
14-15 years: average time that a heart will last
30% will not make it past the first year
16-17 per year: amount of transplants they do
15: average number of daily medications she will take the first year
You never think as a parent that you would be put in a situation like this. I question a lot how we are supposed to make this decision.
I left this meeting very angry and we were given a timeline that we should come to a decision on if transplant would be an option we would want for our little Mallory. We have 2 days to decide that... 2 days and I didn't even want to think or talk about it.
As a result, today we met with the transplant team to discuss our options.
Today I went through so many emotions... Anger about why this was happening to us. Fear of the medical unknown on what Mallory's life would be like. Happiness that we even have transplant as an option. Sadness for my little Mallory having to endure all of this at 2 weeks old.
Dustin and I sat very quiet as they talked about a heart transplant. Again, I focused on numbers.
14-15 years: average time that a heart will last
30% will not make it past the first year
16-17 per year: amount of transplants they do
15: average number of daily medications she will take the first year
You never think as a parent that you would be put in a situation like this. I question a lot how we are supposed to make this decision.
I left this meeting very angry and we were given a timeline that we should come to a decision on if transplant would be an option we would want for our little Mallory. We have 2 days to decide that... 2 days and I didn't even want to think or talk about it.
Faith
One thing Dustin and I have realized is faith is the only thing we have at the moment. It gets us though every hour of every day.
Each moment is a different emotion and each day another challenge. We have mini victories and then two huge steps backwards. That is normal and this has become normal.
What gets us through each day is our faith and our trust that He has a plan for all of us and Mallory Kate. That doesn't mean that I do not still have the emotions daily, hourly and by the minute. But, I try so hard to keep my faith and we are trying to make it the center of all of this especially Mallory's room that we have finally tried to make more personal.
If there is one thing I have realized it is that no matter what our path is here at Children's, we will be here for a while and the more comfortable you try and make it, the easier it is to stay strong when I am with her. I have to talk myself out of tears a lot in her room because I do not want her to feel that.
Each moment is a different emotion and each day another challenge. We have mini victories and then two huge steps backwards. That is normal and this has become normal.
What gets us through each day is our faith and our trust that He has a plan for all of us and Mallory Kate. That doesn't mean that I do not still have the emotions daily, hourly and by the minute. But, I try so hard to keep my faith and we are trying to make it the center of all of this especially Mallory's room that we have finally tried to make more personal.
If there is one thing I have realized it is that no matter what our path is here at Children's, we will be here for a while and the more comfortable you try and make it, the easier it is to stay strong when I am with her. I have to talk myself out of tears a lot in her room because I do not want her to feel that.
Madison
We are trying to make sure that at least one of us goes home to see her every day. She seems okay and not asking too many questions. All she knows at this point is Baby Mallory is sick and at the doctor until she gets better.
The support of family has been so wonderful to help us through that. I know that Aunt B and Philly are keeping her mind off the fact that mom and dad aren't around, but it still hurts my heart.
Tonight we decided to both go home for a little while together and take Madison to dinner ...just the 3 of us. I don't know who it was more therapeutic for.... I think me :)
Although it was only a few hours, spending that time with Madison seemed to give me more energy and stepping away together was therapeutic for both of us.
06 May 2012
Sunday May 6, 2012
This was Dustin's first experience with Dr. Doom. Today Mallory's BNP had decreased more to 267 and her troponin went down slightly, but not enough to be a good sign (16.3). She isn't really making any huge steps in the positive direction. We aren't going backwards, but the one problem with ECMO is that she cannot stay on the machine for an extended period of time. Most don't stay on much more than 2 weeks.
At this point none of the cultures have come back positive so we turned off the antibiotics. We knew that was a possibility because when we got to the pediatrician on Thursday morning they immediately gave her antibiotics. I am thankful that they reacted so quickly even if we may never know what hurt Mallory's heart.
As soon as we got to go back and see Mallory today Dustin was very quiet. I think this morning was a bad day for him. It is crazy how you adapt to each others emotions. When to be quiet, when to talk, when to cry together and the perfect time to make a joke. I looked back at him and he had made a sign that has become her mantra and the mantra of all of the patients in her area.
It was through this sign too that I saw that Dr. Cuadrado is not as gruff as he comes across and it is just his style. He loves Mallory's sign and so does every person that walks in!
Today we had another great moment - today we saw Mallory's eyes for the first time since we got here. It was a perfect moment and she looked at Dustin and I for a good 5 minutes almost as if to tell us to be strong. Sometimes I think she is the one being strong for me.
At this point none of the cultures have come back positive so we turned off the antibiotics. We knew that was a possibility because when we got to the pediatrician on Thursday morning they immediately gave her antibiotics. I am thankful that they reacted so quickly even if we may never know what hurt Mallory's heart.
As soon as we got to go back and see Mallory today Dustin was very quiet. I think this morning was a bad day for him. It is crazy how you adapt to each others emotions. When to be quiet, when to talk, when to cry together and the perfect time to make a joke. I looked back at him and he had made a sign that has become her mantra and the mantra of all of the patients in her area. It was through this sign too that I saw that Dr. Cuadrado is not as gruff as he comes across and it is just his style. He loves Mallory's sign and so does every person that walks in!
Today we had another great moment - today we saw Mallory's eyes for the first time since we got here. It was a perfect moment and she looked at Dustin and I for a good 5 minutes almost as if to tell us to be strong. Sometimes I think she is the one being strong for me.
05 May 2012
Doctor's Rounds
Every morning Dustin and I participate in doctors rounds. It is our opportunity to see how Mallry is doing and answer any questions we may have.
This morning was my first doctors rounds by myself. In the midst of all of the chaos of the past couple days, we had completely forgotten that we had a contract on our house and an appointment that morning for the home inspection.
This was my first experience with Dr. Gloom and Doom. (his nickname for himself not mine!) Dr. Cuadrado was a rough guy... A straight shooter. He tells it like it is with no false hopes and at times made me feel that he had given up on Mallory. Since then I have realized that it is just his style. Most of the Cardiologists are this way and their bedside manor may not be their strong suit...
This morning I picked up on a couple hormones and proteins that they were measuring daily to judge the progress she was making.
Brain natriuretic peptide (BNP) is secreted by the ventricles of the heart in response to excessive stretching of heart muscle. It is increased in patients with left ventricular heart disfunction or heart failure. When Mallory was admitted her BNP was 1400. This morning it had come down to 700. This number should be in the double digits.
Troponin is a protein that is released when the heart has been damaged. In a healthy heart, Troponin levels would be less than 1. At admission, Mallory's troponin levels were 21.9. This morning we were at 16.6.
For those that know me well, I am very much a numbers person. This made sense to me and was something that I could grasp and look for each morning in our doctors rounds.
Nothing at this point had shown up from all of the cultures and labs they had drawn and I had decided at it didn't matter to me what made Mallory sick, I just needed her to be healed.
Her rhythms appeared to be getting a little bit better and her swelling had gone down some.
This was the first time that Dr. Gloom mentioned a transplant. I was sitting alone listening to all of the smart doctors talk and they ordered blood work to evaluate transplant. That frightened me so much that I didn't even ask why at this point. I just called Dustin and lost it.
This morning was my first doctors rounds by myself. In the midst of all of the chaos of the past couple days, we had completely forgotten that we had a contract on our house and an appointment that morning for the home inspection.
This was my first experience with Dr. Gloom and Doom. (his nickname for himself not mine!) Dr. Cuadrado was a rough guy... A straight shooter. He tells it like it is with no false hopes and at times made me feel that he had given up on Mallory. Since then I have realized that it is just his style. Most of the Cardiologists are this way and their bedside manor may not be their strong suit...
This morning I picked up on a couple hormones and proteins that they were measuring daily to judge the progress she was making.
Brain natriuretic peptide (BNP) is secreted by the ventricles of the heart in response to excessive stretching of heart muscle. It is increased in patients with left ventricular heart disfunction or heart failure. When Mallory was admitted her BNP was 1400. This morning it had come down to 700. This number should be in the double digits.
Troponin is a protein that is released when the heart has been damaged. In a healthy heart, Troponin levels would be less than 1. At admission, Mallory's troponin levels were 21.9. This morning we were at 16.6.
For those that know me well, I am very much a numbers person. This made sense to me and was something that I could grasp and look for each morning in our doctors rounds.
Nothing at this point had shown up from all of the cultures and labs they had drawn and I had decided at it didn't matter to me what made Mallory sick, I just needed her to be healed.
Her rhythms appeared to be getting a little bit better and her swelling had gone down some.
This was the first time that Dr. Gloom mentioned a transplant. I was sitting alone listening to all of the smart doctors talk and they ordered blood work to evaluate transplant. That frightened me so much that I didn't even ask why at this point. I just called Dustin and lost it.
04 May 2012
Friday May 4th, 2012
We were now at Egleston and once again waiting... The doctor on staff wanted to try one last medication to regulate her blood pressure and irregular beats. This medication did not work and he sat us down to talk about the ECMO machine.
It would act like her heart and lungs circulating her blood in and out of her body. It sounded completely frightening to Dustin and I but it was her chance to rest and try to heal the damage the virus has caused her heart.
It was a couple hours of surgery to get her set up on the ECMO machine. They had to attach it to both a large vein and artery in her neck.
If you want to read more about the ECMO machine, this website is pretty good for a high level overview:
http://www.cincinnatichildrens.org/health/e/ecmo/
When we did get to go in and see her, it was about 3:00 am. Her color was back, her blood pressure was regulated. She looked fantastic compared to the last time we saw her. The machine was big, but not as scary as we had thought. It was an amazing piece of equipment that had saved Mallory's life. After sitting and holding her hand for a while, we finally decided to get some sleep.
Sleep Rooms have become our second home here at Egleston. Each day we sign up for a lottery to get a sleep room for the night. The first night we were in a room that had 2 fold out chairs. Since then we have gotten lucky with rooms that have 2 twin beds. They also have showers, lockers and washers/dryers that we can use. We can move our stuff in at 5:30 each night but we have to be out by 10:30 each morning so the rooms can be cleaned.
It would act like her heart and lungs circulating her blood in and out of her body. It sounded completely frightening to Dustin and I but it was her chance to rest and try to heal the damage the virus has caused her heart.
It was a couple hours of surgery to get her set up on the ECMO machine. They had to attach it to both a large vein and artery in her neck.
If you want to read more about the ECMO machine, this website is pretty good for a high level overview:
http://www.cincinnatichildrens.org/health/e/ecmo/
When we did get to go in and see her, it was about 3:00 am. Her color was back, her blood pressure was regulated. She looked fantastic compared to the last time we saw her. The machine was big, but not as scary as we had thought. It was an amazing piece of equipment that had saved Mallory's life. After sitting and holding her hand for a while, we finally decided to get some sleep.
Sleep Rooms have become our second home here at Egleston. Each day we sign up for a lottery to get a sleep room for the night. The first night we were in a room that had 2 fold out chairs. Since then we have gotten lucky with rooms that have 2 twin beds. They also have showers, lockers and washers/dryers that we can use. We can move our stuff in at 5:30 each night but we have to be out by 10:30 each morning so the rooms can be cleaned.
Thursday May 3, 2012
April 24, 2012 - the day sweet Mallory Kate was brought into our world. Since the day she was born she was such a joyous baby. Very easy, alert, calm, and such a good eater (which any Mom out ther will understand how crucial that is!). Madison was adapting better than expected with her "baby Mallory." Our new family of four was so natural for us and although we were only together at home as a family for a week, it was a wonderful week.
May 3rd, 2012 - Mallory had been such a great eater that it bothered me when the past day or so she had struggled at every feeding taking maybe 2 oz at a time. She was having problems producing a bowel movement and finally had one the night before but she was still struggling and grunting quite a bit. When we woke up Thurday morning I told Dustin I was going to make a doctors appointment for her and try and get something to help her and talk to them about changing her formula. I made an appt for 9:10 and packed her up in her car seat. I had noticed she started loosing a little of her color and attributed that to the fact I could barely get her to take an ounce that morning.
As soon as we got to the doctor, I knew something wasn't right. Her color was completely grey and she was having a hard time catching her breath. They took her temperature and it was only 95. The nurse practitioner took Mallory next door to see the doctor and soon enough I was sitting in a room by myself watching the staff run around yelling to call 911.
Much after that point is still a blur. I got in touch with Dustin and he met me at the doctor's office as I was getting into the ambulance. He followed us to Childrens Heathcare - Scottish Rite. They took her to the emergency room and soon after we were put in a very small room to wait. I am unsure of how long we were waiting but it felt like an eternity. When they finally had someone to talk to us the only thing I remember them saying was how sick our little girl was.
We finally got to see her as they wheeled her to the ICU. We then had to wait another few hours while they got her settled. I have no idea what time it was when we finally got to see her but I remember thinking this could not be my baby with all of these tubes and IVs. At this point they were giving her a lot of different antibiotics to fight whatever had infected her heart but it was still a mystery as to what it was. All we knew was that most likely she had been exposed to some virus/bacteria that made her very sick.
They were having a hard time regulating her blood pressure and she was having a lot of irregular heart rhythms and tachycardia. It had appeared that the virus had attacked her heart and it was decided that the best place for her to be would be Egleston children's hospital. They had a machine that could help give her heart some rest and hopefully time to heal. The only option we saw was to get her to Egleston as soon as possible, so that is when the LifeFlight team was called and Mallory was airlifted to Egleston.
At this time it was probably close to 11:00 pm.....
May 3rd, 2012 - Mallory had been such a great eater that it bothered me when the past day or so she had struggled at every feeding taking maybe 2 oz at a time. She was having problems producing a bowel movement and finally had one the night before but she was still struggling and grunting quite a bit. When we woke up Thurday morning I told Dustin I was going to make a doctors appointment for her and try and get something to help her and talk to them about changing her formula. I made an appt for 9:10 and packed her up in her car seat. I had noticed she started loosing a little of her color and attributed that to the fact I could barely get her to take an ounce that morning.
As soon as we got to the doctor, I knew something wasn't right. Her color was completely grey and she was having a hard time catching her breath. They took her temperature and it was only 95. The nurse practitioner took Mallory next door to see the doctor and soon enough I was sitting in a room by myself watching the staff run around yelling to call 911.
Much after that point is still a blur. I got in touch with Dustin and he met me at the doctor's office as I was getting into the ambulance. He followed us to Childrens Heathcare - Scottish Rite. They took her to the emergency room and soon after we were put in a very small room to wait. I am unsure of how long we were waiting but it felt like an eternity. When they finally had someone to talk to us the only thing I remember them saying was how sick our little girl was.
We finally got to see her as they wheeled her to the ICU. We then had to wait another few hours while they got her settled. I have no idea what time it was when we finally got to see her but I remember thinking this could not be my baby with all of these tubes and IVs. At this point they were giving her a lot of different antibiotics to fight whatever had infected her heart but it was still a mystery as to what it was. All we knew was that most likely she had been exposed to some virus/bacteria that made her very sick.
They were having a hard time regulating her blood pressure and she was having a lot of irregular heart rhythms and tachycardia. It had appeared that the virus had attacked her heart and it was decided that the best place for her to be would be Egleston children's hospital. They had a machine that could help give her heart some rest and hopefully time to heal. The only option we saw was to get her to Egleston as soon as possible, so that is when the LifeFlight team was called and Mallory was airlifted to Egleston.
03 May 2012
Healing Mallory Kate
When I try to think back of where to even start to share our journey the past week, I am at a complete loss for words. I struggle to even understand how we got here, let alone try and communicate that with all of the people who have been praying for our little Mallory Kate.
The emotions we as a family have been experiencing have been complete highs and lows that I pray no family has to even endure in their lifetime. My hope for this blog is to not only share updates, photos and stories of our journey, but it is an effort to provide therapy for both Dustin and I on this long road we have ahead of us.
I will attempt to go back through my emotions of the past week and share our story, but first I want to thank all of the people who have been thinking about Mallory and praying for her and our entire family. Your support has been unbelievable and please know, although at this time it is too difficult for me to reach out to each of you, I truly thank you from the bottom of my heart.
The emotions we as a family have been experiencing have been complete highs and lows that I pray no family has to even endure in their lifetime. My hope for this blog is to not only share updates, photos and stories of our journey, but it is an effort to provide therapy for both Dustin and I on this long road we have ahead of us.
I will attempt to go back through my emotions of the past week and share our story, but first I want to thank all of the people who have been thinking about Mallory and praying for her and our entire family. Your support has been unbelievable and please know, although at this time it is too difficult for me to reach out to each of you, I truly thank you from the bottom of my heart.
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