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.
3.02.2009
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.
1.27.2009
Give Thanks
"In everything, give thanks; for this is God's will for you in Christ Jesus." 1 Thessalonians 5:18
In everything, give thanks.
Everything.
These past few days have been rough for me and Bethany. Seeing Emma Kate in pain hurts worse than when I am in pain. Watching her lay in bed and cough and cough and grunt and then throw up is awful. We take turns rocking her, holding her chest when she coughs, and we try constantly to make her smile. When she does, it makes it all better for a little while. It is just so frustrating that she can't seem to keep down her food.
The doctors still aren't sure what is causing this but are trying several different things. Emma Kate is on a continuous feed now through her ng tube at a very slow rate. Perhaps her stomach is still waking up from the anesthesia and needs a little more time to digest. She could also: have a stomach bug/ be swallowing mucus/ be allergic to motrin (she is no longer getting it)/ be nauseous still from surgery. Whatever it is, Emma Kate will not be discharged until she has gone 24 hours without throwing up. The longest she has made it so far is 8 hours. So we wait.
And though we wait, I am very thankful. Emma Kate's heart is exactly the way they want it to be. Her lungs look great. Her sats have been incredible for a glenn baby. Other than the eating, she is doing awesome. Even though the doctors aren't sure what is causing her throwing up, they have told us it is not serious. Because she is doing so well otherwise, they feel this will be corrected in a short while. This is comforting that they aren't worried about it.
And though Emma Kate is going through what she is, I am very thankful. She is my little girl. She knows my voice and smiles at me and laughs at me when she can. She is overcoming something so phenomenal and she laughs while doing it. She fusses and cries a lot right now, but she is still happy. And she will beat this.
We are also thankful for your prayers. I know I say it a lot, but it is overwhelming the amount of love and support you have shown for us. And we are thankful to be a part of it. Because your prayers have been mighty, I would like for you to pray for a little girl here in the hospital that has HLHS, also. Her name is Katelyn Stone and she had her Norwood (first stage) last week. She had to go back on heart bypass this morning and her parents are understandably upset. Please pray for Katelyn and her parents.
And in everything, give thanks.
In everything, give thanks.
Everything.
These past few days have been rough for me and Bethany. Seeing Emma Kate in pain hurts worse than when I am in pain. Watching her lay in bed and cough and cough and grunt and then throw up is awful. We take turns rocking her, holding her chest when she coughs, and we try constantly to make her smile. When she does, it makes it all better for a little while. It is just so frustrating that she can't seem to keep down her food.
The doctors still aren't sure what is causing this but are trying several different things. Emma Kate is on a continuous feed now through her ng tube at a very slow rate. Perhaps her stomach is still waking up from the anesthesia and needs a little more time to digest. She could also: have a stomach bug/ be swallowing mucus/ be allergic to motrin (she is no longer getting it)/ be nauseous still from surgery. Whatever it is, Emma Kate will not be discharged until she has gone 24 hours without throwing up. The longest she has made it so far is 8 hours. So we wait.
And though we wait, I am very thankful. Emma Kate's heart is exactly the way they want it to be. Her lungs look great. Her sats have been incredible for a glenn baby. Other than the eating, she is doing awesome. Even though the doctors aren't sure what is causing her throwing up, they have told us it is not serious. Because she is doing so well otherwise, they feel this will be corrected in a short while. This is comforting that they aren't worried about it.
And though Emma Kate is going through what she is, I am very thankful. She is my little girl. She knows my voice and smiles at me and laughs at me when she can. She is overcoming something so phenomenal and she laughs while doing it. She fusses and cries a lot right now, but she is still happy. And she will beat this.
We are also thankful for your prayers. I know I say it a lot, but it is overwhelming the amount of love and support you have shown for us. And we are thankful to be a part of it. Because your prayers have been mighty, I would like for you to pray for a little girl here in the hospital that has HLHS, also. Her name is Katelyn Stone and she had her Norwood (first stage) last week. She had to go back on heart bypass this morning and her parents are understandably upset. Please pray for Katelyn and her parents.
And in everything, give thanks.
1.26.2009
Specific Prayer Request
Something that I have witnessed during these last 5 months has been the awesome power of prayer. When we have prayed and asked you to pray for something specific, God has answered in mighty way. So I come to you again asking for your prayers.
Emma Kate's heart is looking amazing! Praise God for this. Her x-rays are clear and her lungs sound great! She has gotten a little more fussy, which is to be expected as Glenn babies are said to have awful headaches for a few weeks after surgery. We would have been sent home yesterday if it weren't for one issue.
Emma Kate is very congested in her head. This congestion is making it hard for her to eat and breathe at the same time. When it builds up, she gags and throws up her formula. To reduce her swallowing as much mucus, we have decided to let her be fed through her ng tube. This has helped her keep down her formula, but the mucus still gags her and makes it difficult for her to breathe.
So please pray specifically for Emma Kate's congestion to clear. Please pray that the irritation in her throat will go away and she will be able to eat on her own. And please pray that Emma Kate will get better rest with this healing. And please praise God for the healing that we are seeing in Emma Kate. She is a miracle.
So happy the morning of surgery
Daddy and Emma Kate
Post-Op
Much better
1.24.2009
Ups and Downs
It is 4:55am and Bethany and I are sleepy yet up talking about Emma Kate. And we are only a few feet away from her because we are in the Step Down Unit! We left the CICU last night around 11:15 and have gotten around 3 hours of sleep since. But this is fine with us because Emma Kate knows we are here.
Yesterday was definitely an up and down kind of day. It started with good news that Emma Kate was going to have her heart lines taken out. This would leave only iv's and her chest tubes in. The nurses had to give her morphine before this was done for obvious reasons but also gave her Tylenol with codeine shortly after. This left EK pretty lethargic for the majority of the afternoon. Because of this, she wouldn't eat much. This caused the nurse to use the most dreaded term in our household. One that when mentioned, causes Bethany to cringe. The NG Tube.
The nurse mentioned those letters and we immediately tried everything we could to get Emma Kate to eat by mouth. Unfortunately, because she was so out of it, nothing would work. I will give the nurses and the nurse practitioner credit though, they kept the tube out for as long as they could to keep us happy. But Emma Kate has to have food. So the awful thing is in. This is just temporary and it does serve a good purpose. We just can't stand the thought of it.
Emma Kate's chest tubes are still in as she is still draining her lymph fluids. It has tapered off a good bit, but there is still enough to make the tubes necessary. We have been told by several people that this is a common thing with heart babies which is comforting. Not any easier, but comforting none the less.
Emma Kate's sats have been consistently in the 75-85 range which is great. We have been told by several nurses that she is one of the "pinkest" glenn babies they have seen. It is weird to see her when she gets upset though. She holds her breath and turns almost purple in the face. This will take a while to get used to. Pink is definitely a better color for her.
As for her attitude, Emma Kate is showing signs of her normal happy self. She is, quite understandably, in pain from the surgery and the headaches that come with the increase in blood flow to her head, but she is still so calm. She fusses when the nurses tug at various things but that is it. She is smiling again, which is a blessing to see, and she played with some links for about 15 minutes that made us feel like we were at home. And she is smiling at us. There is no greater joy that seeing this after seeing her so out of it for 2 days.
She also had the iv removed from her left hand giving her fingers to suck on. Emma Kate LOVES her fingers and it has been awful watching her bring both boarded hands to her mouth in frustration. She also enjoyed using the board on her right hand (the boards are used to keep the wrists straight so the iv stays in) to swat the links we were playing with. She is too cute!
As for me and Bethany, we are doing alright. These days come with so many stresses that sleep becomes just sleep, not rest. We try not to think about going home because that just makes us want it more. We miss our sweet Anna Brooke and can't wait to hold both our girls while lying in our own bed. We are so blessed with our family!
Thank you for the encouraging comments and emails/facebook posts. Sorry that we are bad about getting back to you. You all have made this journey a little more bearable. And I promised pictures and they will come. But it is now 5:40am and I am exhausted.
Yesterday was definitely an up and down kind of day. It started with good news that Emma Kate was going to have her heart lines taken out. This would leave only iv's and her chest tubes in. The nurses had to give her morphine before this was done for obvious reasons but also gave her Tylenol with codeine shortly after. This left EK pretty lethargic for the majority of the afternoon. Because of this, she wouldn't eat much. This caused the nurse to use the most dreaded term in our household. One that when mentioned, causes Bethany to cringe. The NG Tube.
The nurse mentioned those letters and we immediately tried everything we could to get Emma Kate to eat by mouth. Unfortunately, because she was so out of it, nothing would work. I will give the nurses and the nurse practitioner credit though, they kept the tube out for as long as they could to keep us happy. But Emma Kate has to have food. So the awful thing is in. This is just temporary and it does serve a good purpose. We just can't stand the thought of it.
Emma Kate's chest tubes are still in as she is still draining her lymph fluids. It has tapered off a good bit, but there is still enough to make the tubes necessary. We have been told by several people that this is a common thing with heart babies which is comforting. Not any easier, but comforting none the less.
Emma Kate's sats have been consistently in the 75-85 range which is great. We have been told by several nurses that she is one of the "pinkest" glenn babies they have seen. It is weird to see her when she gets upset though. She holds her breath and turns almost purple in the face. This will take a while to get used to. Pink is definitely a better color for her.
As for her attitude, Emma Kate is showing signs of her normal happy self. She is, quite understandably, in pain from the surgery and the headaches that come with the increase in blood flow to her head, but she is still so calm. She fusses when the nurses tug at various things but that is it. She is smiling again, which is a blessing to see, and she played with some links for about 15 minutes that made us feel like we were at home. And she is smiling at us. There is no greater joy that seeing this after seeing her so out of it for 2 days.
She also had the iv removed from her left hand giving her fingers to suck on. Emma Kate LOVES her fingers and it has been awful watching her bring both boarded hands to her mouth in frustration. She also enjoyed using the board on her right hand (the boards are used to keep the wrists straight so the iv stays in) to swat the links we were playing with. She is too cute!
As for me and Bethany, we are doing alright. These days come with so many stresses that sleep becomes just sleep, not rest. We try not to think about going home because that just makes us want it more. We miss our sweet Anna Brooke and can't wait to hold both our girls while lying in our own bed. We are so blessed with our family!
Thank you for the encouraging comments and emails/facebook posts. Sorry that we are bad about getting back to you. You all have made this journey a little more bearable. And I promised pictures and they will come. But it is now 5:40am and I am exhausted.
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