Emma Kate did wonderfully yesterday, much to the relief of her tired parents. Bethany and I got little sleep Monday night preparing for the Fontan. Fortunately Emma Kate slept through the night. We arrived at Egleston yesterday morning around 5:45 and we were taken back around 6. Emma Kate was happy and snuggling with her pillow, blanket and her new minion "Stuart". After taking her versed, she was out in 5 minutes. Anesthesiology came to take her around 7:30 and we went out to sit and wait.
Her surgery went faster than we expected, ending around 11:45. We met with Dr. Alsoufi and he confirmed that there were no surprises and everything went as planned. He let us know that these next several hours are critical as her body adjusts to her new physiology. We were able to go back and see her for the first time around 1:15. It is never easy to see our daughter with a breathing tube, chest tubes and wires surrounding her body, but what a relief it was to see her "post-fontan".
Post Fontan is something we have dreamed about for a lifetime. Now, our little girl doesn't have a scheduled surgery on the horizon. Not to say there won't be more, but nothing is currently in the works. And she has pink toes and pink fingers and pink lips. She has always been beautiful and now this is just pink icing on the cake.
Yesterday afternoon, Emma Kate began waking up and becoming more alert. When she would recognize that we were there, she would mouth that she wanted some water. We were told that she would have to be extubated and then wait 4-6 hours for her belly to wake up to prevent EK from throwing up. This was definitely the hardest part of yesterday afternoon/evening as we would only be able to tell her "soon".
She was extubated around 5:15 and, after many teary requests, received her first two medicine cups of water around 9:30. This was satisfying enough for her to close her eyes and sleep for an hour. When she woke back up, she looked at me and I thought she said "I want you to rub my back". As I started to rub her back, she said "No, I want water from my bag". We bought her a water bottle two days ago and that is all she can think about. She had a few more sips throughout the night and has, unfortunately, spit some back up. She did eat a few graham crackers and was able to hold those down. Our prayer is that she can build up the strength to hold food and water down more and more throughout the day.
Overall, Emma Kate is doing great. Other than spitting up some water, she did have a little issue with high blood pressure. They have put her on some medicine that has brought it down a good bit. Her chest tube drainage is looking good and this will be monitored for several days.
It is now 7:30am on Wednesday morning. We are currently waiting for "family rounds" where we can go listen to the Dr.'s discuss Emma Kate and her plans. We have heard that she might go to the step down unit tonight or tomorrow depending on how she is doing. The thought is also to have her try to walk sometime today or tomorrow. The more movement she can have, the better her chest can drain and prevent fluid buildup. We will update later after hearing the latest.
I know that Bethany and I often say thank you for your thoughts and prayers, but we are truly grateful and humbled by the love and support we have received. It is amazing to get messages from all over of people praying for Emma Kate. My phone died twice yesterday from the activity. Please don't let that stop you, it is wonderful. And please know that if we haven't responded, it isn't that we didn't get the message or that we didn't want to write back. We hope to be able to respond to each one of you when we have the opportunity. Until then, thank you with all that we are.
7.10.2013
7.08.2013
Fontan - 7/9 7:30 am
Today was a little harder than I expected. I have been trying to
mentally prepare myself for this for a few weeks, but I guess this is
something that doesn't get easier with time. It seems to be quite the
opposite.
I think what I am struggling with is knowing what will happen tomorrow and I can't take that hurt away from my daughter. Emma Kate comes to me to comfort her when she has a bad dream at night. She comes to me to hold her when she is tired and wants to snuggle on the couch. She comes to me to carry her when she is too tired to walk up the stairs. And now, at the time when she is the weakest, I have to give her to someone else and trust them with her life. I feel completely helpless.
Let me be clear. I have full confidence that Emma Kate will get through this surgery and thrive as she has after her first two surgeries. I believe that God has a distinct and perfect purpose for Emma Kate's life and has His hand wrapped firmly around her heart. I believe that these miracle workers at Egleston are prepared and able to and will indeed do an amazing job tomorrow morning. But I also know that Emma Kate will go through 5 hours of open heart surgery. She will spend a few days in the intensive care unit with wires and tubes that will, at best be uncomfortable for her and, at worst, will cause her pain. She will have her blood drawn numerous times and be woken up throughout the day and night by beeps and nurses and mommy and daddy checking on her. That is why today has been hard. I know what is ahead and can't protect her from it.
All that said, Emma Kate did great today. She got a little bored waiting around as different Dr.'s and nurses came by to explain the next few days and have us fill out paperwork. She also didn't care too much for the lab work but bounced back quickly when all was done. She asked Bethany if she could now walk up the stairs without getting tired. I am so ready for that to be the case. This evening, she was overtired and a little anxious. She doesn't fully grasp what all is going on but knows something is going to happen tomorrow. She was a little restless but finally snuggled with me and Bethany and is now passed out. I pray she has sweet, restful dreams.
She will be the first case tomorrow, meaning we will be at the hospital at 6am. She will get versed (princess juice as EK calls it) soon after we arrive to help make her sleepy. They will take her back around 730 and hope to begin the procedure around 8. If all goes well, she should be back in the ICU around 1pm and we will be able to see her around 2.
We have received numerous calls, texts, emails and facebook messages of encouragement and prayers and we are tremendously thankful for each one. I feel selfish always asking for the prayers of others, some who have never met us, but still I plead for them. I believe that Emma Kate is a result of the power of prayer and will always hold firm in that belief. So if you would, please pray tomorrow morning for our Emma Kate. Ask that God walk with our new surgeon, Dr. Alsoufi, and allow his hand to do the work he was trained for. Ask that His presence fill the operating room so that peace and wisdom would abound. I would also humbly ask that you pray for a peace that passes all understanding to cover me and Bethany as we sit and wait and wonder and pray. Finally, pray fervently that Emma Kate will have the strength to endure this third surgery and that His comfort and healing would consume her these next few weeks.
We will update as we can tomorrow. Thank you many many times over for lifting up our sweet girl. She is our heart and our joy.
I think what I am struggling with is knowing what will happen tomorrow and I can't take that hurt away from my daughter. Emma Kate comes to me to comfort her when she has a bad dream at night. She comes to me to hold her when she is tired and wants to snuggle on the couch. She comes to me to carry her when she is too tired to walk up the stairs. And now, at the time when she is the weakest, I have to give her to someone else and trust them with her life. I feel completely helpless.
Let me be clear. I have full confidence that Emma Kate will get through this surgery and thrive as she has after her first two surgeries. I believe that God has a distinct and perfect purpose for Emma Kate's life and has His hand wrapped firmly around her heart. I believe that these miracle workers at Egleston are prepared and able to and will indeed do an amazing job tomorrow morning. But I also know that Emma Kate will go through 5 hours of open heart surgery. She will spend a few days in the intensive care unit with wires and tubes that will, at best be uncomfortable for her and, at worst, will cause her pain. She will have her blood drawn numerous times and be woken up throughout the day and night by beeps and nurses and mommy and daddy checking on her. That is why today has been hard. I know what is ahead and can't protect her from it.
All that said, Emma Kate did great today. She got a little bored waiting around as different Dr.'s and nurses came by to explain the next few days and have us fill out paperwork. She also didn't care too much for the lab work but bounced back quickly when all was done. She asked Bethany if she could now walk up the stairs without getting tired. I am so ready for that to be the case. This evening, she was overtired and a little anxious. She doesn't fully grasp what all is going on but knows something is going to happen tomorrow. She was a little restless but finally snuggled with me and Bethany and is now passed out. I pray she has sweet, restful dreams.
She will be the first case tomorrow, meaning we will be at the hospital at 6am. She will get versed (princess juice as EK calls it) soon after we arrive to help make her sleepy. They will take her back around 730 and hope to begin the procedure around 8. If all goes well, she should be back in the ICU around 1pm and we will be able to see her around 2.
We have received numerous calls, texts, emails and facebook messages of encouragement and prayers and we are tremendously thankful for each one. I feel selfish always asking for the prayers of others, some who have never met us, but still I plead for them. I believe that Emma Kate is a result of the power of prayer and will always hold firm in that belief. So if you would, please pray tomorrow morning for our Emma Kate. Ask that God walk with our new surgeon, Dr. Alsoufi, and allow his hand to do the work he was trained for. Ask that His presence fill the operating room so that peace and wisdom would abound. I would also humbly ask that you pray for a peace that passes all understanding to cover me and Bethany as we sit and wait and wonder and pray. Finally, pray fervently that Emma Kate will have the strength to endure this third surgery and that His comfort and healing would consume her these next few weeks.
We will update as we can tomorrow. Thank you many many times over for lifting up our sweet girl. She is our heart and our joy.
7.03.2013
July 9th
Four years and four months ago I last blogged about Emma Kate. I blink, and she truly is growing before my eyes. As I read through her journey this evening, I found myself laughing and crying at the situations and circumstances that seem so far away from the present. Our days are no longer filled with thoughts of ng tubes or chylothorax, but instead Lalaloopsy dolls and One Direction songs. Baby Einstein movies have turned into hours of Good Luck Charlie episodes and Wreck it Ralph. No food for 10 days is just an awful distant memory. Now, hot dogs and spaghetti followed by Nutella and Cheddar Bunnies fill her belly. She loves to sip coke but will request water with all her meals.
Since March of 2009, Emma Kate has learned to crawl, walk, run, dance and flip wherever she has a few feet of space. She has traveled to Hawaii, New York City and numerous places in between. She is shy to strangers and a comedian to friends and family. She idolizes her big sister and will do anything and everything to get her attention. She has become a big sister, a role that was unexpected but one that fills her heart more and more everyday. She is a mama's girl and a daddy's girl all at the same time. She loves to snuggle and knows what to say to put a smile on my face. She doesn't pronounce her R's and our southern girl speaks with a New England accent. She weighs 30lbs soaking wet, and yet, is full of spunk. She loves Taylor Swift, One Direction, "Gangnam Style" and "Call Me Maybe". For all intents and purposes, she is a typical almost 5-year old little girl.
Typical, that is, except for her heart. I say that our days are no longer consumed with thoughts of Hypoplastic Left Heart Syndrome, but that is not entirely true. At the back of our minds has been the lingering thought of the Fontan, the third of the three-stage open heart surgery plan that we have known about for 5 years now. 5 years ago, we thought she would've had the Fontan at around 2 or 3 years old. Fortunately, because she has been doing so well, her cardiologist and surgeon have wanted to wait as long as possible.
Now the wait is over. Emma Kate will have her Fontan, next Tuesday, July 9th, again at Egleston in Atlanta. The only difference will be her surgeon. Our hero and Emma Kate's surgeon for her first two stages, Dr. Kirshbom, is now the Chief of Pediatric Cardiac Surgery at Yale and Connecticut Children's hospital. While we are disappointed that Dr. Kirshbom will not be doing Emma Kate's surgery, Egleston is a place that we love and trust with all we are for EK's care. So we will head to Atlanta Sunday night for a full day of pre-op on Monday. And then on to Tuesday.
We understand that we are blessed beyond measure for how well she is doing and has done, but the weight of this surgery is unbelievably overwhelming. Again, we have known about this for over 5 years and now it is here. For the third time, my little girl will go on bypass and have open heart surgery. Please pray for our strength as we prepare Emma Kate for this life-saving event. She is the strongest child I know but I still get weak thinking about the surgery. Please pray for her surgeon and surgical team, that they will do an amazing job working on her heart. Please pray for the nurses that will love her as she heals over the next few weeks. And most importantly, please pray for our Emma Kate. We call her Emma Kate, Katie Bug and Emily Katherine. Pray that our little girl gets through this with all that she is and that this dreaded event will, in 5 years, just be an awful distant memory.
Since March of 2009, Emma Kate has learned to crawl, walk, run, dance and flip wherever she has a few feet of space. She has traveled to Hawaii, New York City and numerous places in between. She is shy to strangers and a comedian to friends and family. She idolizes her big sister and will do anything and everything to get her attention. She has become a big sister, a role that was unexpected but one that fills her heart more and more everyday. She is a mama's girl and a daddy's girl all at the same time. She loves to snuggle and knows what to say to put a smile on my face. She doesn't pronounce her R's and our southern girl speaks with a New England accent. She weighs 30lbs soaking wet, and yet, is full of spunk. She loves Taylor Swift, One Direction, "Gangnam Style" and "Call Me Maybe". For all intents and purposes, she is a typical almost 5-year old little girl.
Typical, that is, except for her heart. I say that our days are no longer consumed with thoughts of Hypoplastic Left Heart Syndrome, but that is not entirely true. At the back of our minds has been the lingering thought of the Fontan, the third of the three-stage open heart surgery plan that we have known about for 5 years now. 5 years ago, we thought she would've had the Fontan at around 2 or 3 years old. Fortunately, because she has been doing so well, her cardiologist and surgeon have wanted to wait as long as possible.
Now the wait is over. Emma Kate will have her Fontan, next Tuesday, July 9th, again at Egleston in Atlanta. The only difference will be her surgeon. Our hero and Emma Kate's surgeon for her first two stages, Dr. Kirshbom, is now the Chief of Pediatric Cardiac Surgery at Yale and Connecticut Children's hospital. While we are disappointed that Dr. Kirshbom will not be doing Emma Kate's surgery, Egleston is a place that we love and trust with all we are for EK's care. So we will head to Atlanta Sunday night for a full day of pre-op on Monday. And then on to Tuesday.
We understand that we are blessed beyond measure for how well she is doing and has done, but the weight of this surgery is unbelievably overwhelming. Again, we have known about this for over 5 years and now it is here. For the third time, my little girl will go on bypass and have open heart surgery. Please pray for our strength as we prepare Emma Kate for this life-saving event. She is the strongest child I know but I still get weak thinking about the surgery. Please pray for her surgeon and surgical team, that they will do an amazing job working on her heart. Please pray for the nurses that will love her as she heals over the next few weeks. And most importantly, please pray for our Emma Kate. We call her Emma Kate, Katie Bug and Emily Katherine. Pray that our little girl gets through this with all that she is and that this dreaded event will, in 5 years, just be an awful distant memory.
3.02.2009
Grateful, Yet Humble
February is supposed to be the shortest month of the year but it seemed to last forever. But thankfully, it is long gone. February went out with awful thunderstorms and March, quite fittingly, came in with beautiful snow.
Snow that was cold and yet refreshing. Snow that only lasted a few hours yet left its mark and reminder that all things are made new and unique. And like snow, all things come and go. And all things are brief.
As I type this, two families of children with heart defects are going through completely different emotions. One family, my own, is rejoicing. Thankful that our month long stay after the Glenn is over. Emma Kate will be discharged in a few hours and will hopefully head home for several months before her Fontan.
Emma Kate will come home and learn how to sit up, crawl, walk and talk before heading back for hopefully her final surgery. She will finally learn what it is to be a normal child. No more keeping her in the house in fear of her shunt clotting. No more keeping her away from other people. She can finally meet our family. And I am so very grateful.
The other family, the Gledhill's, are experiencing every parent's worst nightmare. A nightmare that Bethany and I have had more frequently since having Emma Kate. They are losing their Gracie. And it is breaking my heart.
It has been so hard to watch Emma Kate go through what she has yet she is doing amazing. Gracie hasn't been as fortunate. I have never met this family and I probably never will. But I hurt for them. These heart children around the country become an extension of our family. And when they suffer, we suffer. I hate this defect with all that I am. I pray daily for a cure.
So as I sit here today, I am grateful and weak all in one. I am so excited that my family will all be home today. But am crushed that another family will never be able to say that again.
May I never take things for granted.
And may I never complain again.
Snow that was cold and yet refreshing. Snow that only lasted a few hours yet left its mark and reminder that all things are made new and unique. And like snow, all things come and go. And all things are brief.
As I type this, two families of children with heart defects are going through completely different emotions. One family, my own, is rejoicing. Thankful that our month long stay after the Glenn is over. Emma Kate will be discharged in a few hours and will hopefully head home for several months before her Fontan.
Emma Kate will come home and learn how to sit up, crawl, walk and talk before heading back for hopefully her final surgery. She will finally learn what it is to be a normal child. No more keeping her in the house in fear of her shunt clotting. No more keeping her away from other people. She can finally meet our family. And I am so very grateful.
The other family, the Gledhill's, are experiencing every parent's worst nightmare. A nightmare that Bethany and I have had more frequently since having Emma Kate. They are losing their Gracie. And it is breaking my heart.
It has been so hard to watch Emma Kate go through what she has yet she is doing amazing. Gracie hasn't been as fortunate. I have never met this family and I probably never will. But I hurt for them. These heart children around the country become an extension of our family. And when they suffer, we suffer. I hate this defect with all that I am. I pray daily for a cure.
So as I sit here today, I am grateful and weak all in one. I am so excited that my family will all be home today. But am crushed that another family will never be able to say that again.
May I never take things for granted.
And may I never complain again.
2.22.2009
Dear Future Son
Dear Future Son,
It is a Sunday morning in February. February 22nd to be exact. I am sitting here with your future wife, Emma Kate. And as I hold her, my thoughts keep going to you. You have been on my mind a lot this week which is strange because I am not sure if you are even alive yet.
You see, my Emma Kate is fighting hard to meet you one day. She has not eaten today, and has not for the last week in order to correct a complication from surgery. Her second open heart surgery in her short 5 months of life. And this road isn’t finished yet. We will head to Atlanta tomorrow where they will perform another surgery to hopefully correct this complication.
It has been a rough week on me and Bethany. Watching our sweet angel cry because she is hungry has, at times, been too hard to handle. But for some reason, thinking of you makes me smile. I smile because she won’t remember this. She fights hard today, so that one day she will know nothing but happiness. Sure, times will be challenging, but nothing will compare to this. And she can overcome anything.
I smile because she has inspired me more in 6 months than I will be able to inspire her in a lifetime. And you better be amazing, because I can guarantee that she is. Know that I will not make it easy on you. Not because I don’t like you but because she is worth it. And I will have to make sure that you are worth it. She is not fighting this hard now for nothing later.
Every day, until I give you her hand, I promise to kiss her good morning and good night, with hopes that you will do the same. I promise to dance with her in the living room to cheesy Disney songs, with hopes that you will do the same. I promise to read her fairy tales of knights in shining armor, in hopes that you will be the same. I promise to listen to her and get to know her heart, with the hope that you will do the same. And I promise to love her unconditionally, forever, with the hopes that you will do the same.
One day I will walk her down the aisle and hand her to you. But know that my love for her will never stop growing. My prayer is that you will love her even more than I do, which in my mind right now is impossible. But I pray that you will strive every day to reach that. Her heart is fragile and I pray that you will make it whole. I pray for you daily and promise to do so for the rest of my life. I pray that God is molding your heart right now to beat perfectly with hers.
But most of all, I pray that God draws your heart to His. I pray that He teaches you how to be a man after His heart. I pray that He teaches you to love others more than yourself. That you will know how to love Emma Kate’s heart through how you have loved your mother’s heart. That you will respect her how you have respected your father.
And I pray that you are a better man than I am.
Love,
Brooks
It is a Sunday morning in February. February 22nd to be exact. I am sitting here with your future wife, Emma Kate. And as I hold her, my thoughts keep going to you. You have been on my mind a lot this week which is strange because I am not sure if you are even alive yet.
You see, my Emma Kate is fighting hard to meet you one day. She has not eaten today, and has not for the last week in order to correct a complication from surgery. Her second open heart surgery in her short 5 months of life. And this road isn’t finished yet. We will head to Atlanta tomorrow where they will perform another surgery to hopefully correct this complication.
It has been a rough week on me and Bethany. Watching our sweet angel cry because she is hungry has, at times, been too hard to handle. But for some reason, thinking of you makes me smile. I smile because she won’t remember this. She fights hard today, so that one day she will know nothing but happiness. Sure, times will be challenging, but nothing will compare to this. And she can overcome anything.
I smile because she has inspired me more in 6 months than I will be able to inspire her in a lifetime. And you better be amazing, because I can guarantee that she is. Know that I will not make it easy on you. Not because I don’t like you but because she is worth it. And I will have to make sure that you are worth it. She is not fighting this hard now for nothing later.
Every day, until I give you her hand, I promise to kiss her good morning and good night, with hopes that you will do the same. I promise to dance with her in the living room to cheesy Disney songs, with hopes that you will do the same. I promise to read her fairy tales of knights in shining armor, in hopes that you will be the same. I promise to listen to her and get to know her heart, with the hope that you will do the same. And I promise to love her unconditionally, forever, with the hopes that you will do the same.
One day I will walk her down the aisle and hand her to you. But know that my love for her will never stop growing. My prayer is that you will love her even more than I do, which in my mind right now is impossible. But I pray that you will strive every day to reach that. Her heart is fragile and I pray that you will make it whole. I pray for you daily and promise to do so for the rest of my life. I pray that God is molding your heart right now to beat perfectly with hers.
But most of all, I pray that God draws your heart to His. I pray that He teaches you how to be a man after His heart. I pray that He teaches you to love others more than yourself. That you will know how to love Emma Kate’s heart through how you have loved your mother’s heart. That you will respect her how you have respected your father.
And I pray that you are a better man than I am.
Love,
Brooks
2.02.2009
Reflux
Emma Kate had her upper GI done this morning and the good news is everything looks great. The radiologist said everything is in the right place and is functioning the way it is supposed to. It was really neat to see the liquid making its way down Emma Kate.
So the good news is I guess kind of the bad news as well. We still have no idea what is causing Emma Kate to reflux. They have taken her off of the Portagen and put her on a formula called Tolerex. Tolerex looks and smells like potato water. They are trying to determine if perhaps it is the Portagen that has been causing everything. Her feeds began again at 1pm and she has refluxed 2 or 3 times since. Believe it or not, this is better than the Portagen was. So perhaps this will be the cure. Let's pray.
Dr. Kirshbom came in this evening around 6:30 and said that everything else is looking great. He is pleased with her heart and lungs and feels she is doing a great job. He told me that if the Tolerex controls her reflux somewhat, Emma Kate and I can go home Wednesday!! Please Please Please let the Tolerex work! He also said that if by tomorrow afternoon things are still the same, he will get a GI consult and they will begin doing tests to determine what needs to be done. While this option is scary because I don't like the thought of possibly an additional surgery, it will be great to find out what is causing this. But again... please let the Tolerex work!
I will update again in the morning on how she handled everything. Pray that the Tolerex works.
So the good news is I guess kind of the bad news as well. We still have no idea what is causing Emma Kate to reflux. They have taken her off of the Portagen and put her on a formula called Tolerex. Tolerex looks and smells like potato water. They are trying to determine if perhaps it is the Portagen that has been causing everything. Her feeds began again at 1pm and she has refluxed 2 or 3 times since. Believe it or not, this is better than the Portagen was. So perhaps this will be the cure. Let's pray.
Dr. Kirshbom came in this evening around 6:30 and said that everything else is looking great. He is pleased with her heart and lungs and feels she is doing a great job. He told me that if the Tolerex controls her reflux somewhat, Emma Kate and I can go home Wednesday!! Please Please Please let the Tolerex work! He also said that if by tomorrow afternoon things are still the same, he will get a GI consult and they will begin doing tests to determine what needs to be done. While this option is scary because I don't like the thought of possibly an additional surgery, it will be great to find out what is causing this. But again... please let the Tolerex work!
I will update again in the morning on how she handled everything. Pray that the Tolerex works.
Update
Well, Emma Kate and I are still in the step down unit. It has been a long few days with very few answers and even less sleep. She still can not seem to keep her food down.
Even with this, Emma Kate is very happy. She smiles at all the doctors, nurses, people walking by, you name it. She laughs with me and we play almost the entire time she is awake. She has enjoyed the 20x a day we go on walks because she gets to see more than just her room. I, selfishly, do this just as much for me because this room doesn't get any bigger.
Her heart function is looking good. Blood pressure, heart rate, blood gas levels, everything is doing what it is supposed to do. Her sats are consistently in the high 70s to low 80s which is where we want them to be. Her cough has gotten better as well as her congestion. She is now going potty (i still can't believe I use this term on a daily basis) on her own so she is no longer constipated.
All of this leads to the one setback. Emma Kate is refluxing quite often. They have put her back on continuous feeds through her ng tube to slow the reflux down, but it hasn't helped much. This is the only time during the day that Emma Kate shows any pain. Her face turns dark red and she tries with all she is to get this junk out of her. The second it comes up, she looks at me and gives me the biggest smile. She is so relieved when the pain is gone.
The good news is the doctors have ruled out several things. Her chest x-rays came back today clean so they feel that the cause is not pulmonary related. Her diaphragm is still a little elevated, but has gone down over the past few days so they do not feel this is a cause. They are going to continue to monitor this every morning but are pleased with the progress. And as I mentioned, her heart function is looking great so they do not feel there is a cardiac issue.
Dr. Kirshbom, who was out last week, decided this morning to order an upper-GI. We have that at 11 this morning and hopefully will find the cause of this problem. I will update this afternoon with the results. I pray that they are able to see what is causing this reflux and are able to fix it. I am ready for me and Emma Kate to be at home with Bethany and Anna Brooke. More than anything, I am ready for this pain to be gone from my daughter.
Even with this, Emma Kate is very happy. She smiles at all the doctors, nurses, people walking by, you name it. She laughs with me and we play almost the entire time she is awake. She has enjoyed the 20x a day we go on walks because she gets to see more than just her room. I, selfishly, do this just as much for me because this room doesn't get any bigger.
Her heart function is looking good. Blood pressure, heart rate, blood gas levels, everything is doing what it is supposed to do. Her sats are consistently in the high 70s to low 80s which is where we want them to be. Her cough has gotten better as well as her congestion. She is now going potty (i still can't believe I use this term on a daily basis) on her own so she is no longer constipated.
All of this leads to the one setback. Emma Kate is refluxing quite often. They have put her back on continuous feeds through her ng tube to slow the reflux down, but it hasn't helped much. This is the only time during the day that Emma Kate shows any pain. Her face turns dark red and she tries with all she is to get this junk out of her. The second it comes up, she looks at me and gives me the biggest smile. She is so relieved when the pain is gone.
The good news is the doctors have ruled out several things. Her chest x-rays came back today clean so they feel that the cause is not pulmonary related. Her diaphragm is still a little elevated, but has gone down over the past few days so they do not feel this is a cause. They are going to continue to monitor this every morning but are pleased with the progress. And as I mentioned, her heart function is looking great so they do not feel there is a cardiac issue.
Dr. Kirshbom, who was out last week, decided this morning to order an upper-GI. We have that at 11 this morning and hopefully will find the cause of this problem. I will update this afternoon with the results. I pray that they are able to see what is causing this reflux and are able to fix it. I am ready for me and Emma Kate to be at home with Bethany and Anna Brooke. More than anything, I am ready for this pain to be gone from my daughter.
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