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!
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