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.
1.23.2009
Day 2
Yesterday was a little longer than Day 1. I guess the strain of seeing Emma Kate awake and knowing she was uncomfortable along with the lack of sleep didn't help things any. And then hearing terms we aren't familiar with certainly add to the strain. But I think sometimes it is good to cry. It is good to sit down and tell God exactly what we are thinking. And I am comforted that He listens.
Last night was much better. Emma Kate is eating her Portagen (formula with less fat to help the Chylothorax) extremely well. This apparently doesn't taste very good, just like most low-fat food!, but she doesn't seem to mind. After eating last night, she stayed awake for a while without crying. This was definitely a blessing for mommy and daddy to see. She just stared at us with her big blue eyes and looked very peaceful. Thank you God!
We spoke with the nurse this morning and he said that Dr. Kirshbom wants to take out the majority of her lines today. By this afternoon, she should be left with only the chest tube and one or two iv's. The chest tube will remain until they chylothorax has stopped draining. The nurse also said the draining has significantly decreased. And Bethany and I feel without a doubt that this is because of your prayers! Thank you!
I will put up a few pics later of Emma Kate from this journey. She is amazing. And she is our little hero. Thank you for your prayers for her. Please continue. We are all grateful.
Last night was much better. Emma Kate is eating her Portagen (formula with less fat to help the Chylothorax) extremely well. This apparently doesn't taste very good, just like most low-fat food!, but she doesn't seem to mind. After eating last night, she stayed awake for a while without crying. This was definitely a blessing for mommy and daddy to see. She just stared at us with her big blue eyes and looked very peaceful. Thank you God!
We spoke with the nurse this morning and he said that Dr. Kirshbom wants to take out the majority of her lines today. By this afternoon, she should be left with only the chest tube and one or two iv's. The chest tube will remain until they chylothorax has stopped draining. The nurse also said the draining has significantly decreased. And Bethany and I feel without a doubt that this is because of your prayers! Thank you!
I will put up a few pics later of Emma Kate from this journey. She is amazing. And she is our little hero. Thank you for your prayers for her. Please continue. We are all grateful.
1.22.2009
Chylothorax
Please say another prayer for Emma Kate. She has a developed a condition called Chylothorax. This results from lymphatic fluid accumulating in the cavity surrounding the lungs. This happens when damage has been done to the lymphatic system during a surgery. Her chest tube is still in, which is a good thing, because this allows the extra fluid to drain without going into her lungs. They have put Emma Kate on a different formula to help with the draining. They seem to feel confident that things will clear up. But it is hard to not get worried.
This truly sucks. I have been very confident and very care-free in all of this. I know that God will heal her. But I hate this. I hate seeing my happy, laid back daughter cry every time she is awake. It breaks my heart that I can't pick her up. She looks at Bethany and I with eyes that say, "Help me. Hold me daddy". I just want this to be over. And it will be soon. And she won't remember any of it. And it will all be ok. But right now it just sucks.
This truly sucks. I have been very confident and very care-free in all of this. I know that God will heal her. But I hate this. I hate seeing my happy, laid back daughter cry every time she is awake. It breaks my heart that I can't pick her up. She looks at Bethany and I with eyes that say, "Help me. Hold me daddy". I just want this to be over. And it will be soon. And she won't remember any of it. And it will all be ok. But right now it just sucks.
Day One is Over
Yesterday is over and for that I am thankful. I will never be comfortable handing my happy little girl over to someone and seeing her hours later covered in wires with a bandage on her chest. I pray that this only has to happen one more time and then it will be over forever.
But on that note, there is no one I trust more with the care of my daughter than Children's of Atlanta. I hate that we have to be here, but I am so very thankful that we are. As I have mentioned before, these people are our heroes. And they always will be. I don't know how Bethany and I will ever be able to show our gratitude.
But maybe you can help. Maybe you can write them, or call them and tell them thank you. Tell them thank you for loving children more than they have too. Tell them thank you for being amazing at their job... not just mediocre. And thank them for giving hope to those who don't feel there is any hope. In this world of e-mails and texts, write them a letter or give them a call. Let them know that what they do has an impact. Let them know they make a difference. Because they do. Here is the address and phone number:
Children's at Egleston
1405 Clifton Road NE
Atlanta, GA 30322-1062
404-785-6000
Address it or ask for the Pediatric Cardiac ICU or the Step Down Unit, or Dr. Kirshbom. Sorry about that, I just want them to know how much they are appreciated.
As for our Emma Kate, things are going really well! We saw her for the first time around 12:30 yesterday afternoon and she looked so sweet. Her and her buddy Tad were laying in the hospital bed sound asleep. Dr. Kirshbom said that everything went as planned and he feels she will do great. She was extubated last night around midnight, so she is breathing on her own. She still has wires going in and out of her tiny little body, but they are all giving good indications that she is handling everything well. The nurses say she will probably spend one more night in the CICU before heading to the step down unit tomorrow!
Thank you again and again for your thoughts and prayers the last few days. Thank you for thinking about Emma Kate, a little girl who many of you have never met. When she has healed from this, we plan to make that change!
But on that note, there is no one I trust more with the care of my daughter than Children's of Atlanta. I hate that we have to be here, but I am so very thankful that we are. As I have mentioned before, these people are our heroes. And they always will be. I don't know how Bethany and I will ever be able to show our gratitude.
But maybe you can help. Maybe you can write them, or call them and tell them thank you. Tell them thank you for loving children more than they have too. Tell them thank you for being amazing at their job... not just mediocre. And thank them for giving hope to those who don't feel there is any hope. In this world of e-mails and texts, write them a letter or give them a call. Let them know that what they do has an impact. Let them know they make a difference. Because they do. Here is the address and phone number:
Children's at Egleston
1405 Clifton Road NE
Atlanta, GA 30322-1062
404-785-6000
Address it or ask for the Pediatric Cardiac ICU or the Step Down Unit, or Dr. Kirshbom. Sorry about that, I just want them to know how much they are appreciated.
As for our Emma Kate, things are going really well! We saw her for the first time around 12:30 yesterday afternoon and she looked so sweet. Her and her buddy Tad were laying in the hospital bed sound asleep. Dr. Kirshbom said that everything went as planned and he feels she will do great. She was extubated last night around midnight, so she is breathing on her own. She still has wires going in and out of her tiny little body, but they are all giving good indications that she is handling everything well. The nurses say she will probably spend one more night in the CICU before heading to the step down unit tomorrow!
Thank you again and again for your thoughts and prayers the last few days. Thank you for thinking about Emma Kate, a little girl who many of you have never met. When she has healed from this, we plan to make that change!
1.21.2009
Surgery... Update
Scroll down for updates
Emma Kate woke up with us around 4am and was for the most part very happy. She did fuss a little because we couldn't give her anything to eat. We got to Egleston at 5:45 and went to our waiting room. A nurse took her vital signs and gave her some medicine that knocked her out.
The anesthesiologist came to get her around 7:30 and said that we would get a call around 9am for updates. We will let you know when we get some news. Thank you for your thoughts and prayers today.
Update 9:45am
We just spoke with the nurse who is in the room with Emma Kate. She said everything is going well and that Emma Kate is about to go on heart/lung bypass. They will call us back in an hour.
Mommy and Daddy are doing well. Trying not to think too much about what all is going on. Kiki and Lito are here and we are telling funny stories. I will share one from yesterday:
So Bethany, Emma Kate and I were going through all of the pre-op things and of course Emma Kate was smiling and laughing at everyone. The first nurse smiled back and said "I bet your grandma just loves you!".
Now I thought that was an interesting thing to say but just thought that maybe she has grandchildren of her own.
The next nurse we saw during the echo was talking with Emma Kate and making her laugh. She looked at her and said, "I know your grandma loves you so much!"
So now I am puzzled. There is no doubt in my mind that Kiki and Nana love Emma Kate more than anything but this is just a weird thing to say. Is this a practice that Children's of Atlanta recommends? Are nurses told to mention the grandmother?
So we head down to get x-rays done and the nurse once again says, "Oh, I know your grandmother loves you!"
As she walked away, I looked at Bethany and said, "Isn't that strange? Why do all the nurses keep talking about her grandmother loving her??"
Bethany looked at me and pointed to Emma Kate's bib and said, "Brooks, her bib says My Grandma loves me".
So I guess the nurses are more observant than her daddy is. Which is definitely a blessing!
Emma Kate woke up with us around 4am and was for the most part very happy. She did fuss a little because we couldn't give her anything to eat. We got to Egleston at 5:45 and went to our waiting room. A nurse took her vital signs and gave her some medicine that knocked her out.
The anesthesiologist came to get her around 7:30 and said that we would get a call around 9am for updates. We will let you know when we get some news. Thank you for your thoughts and prayers today.
Update 9:45am
We just spoke with the nurse who is in the room with Emma Kate. She said everything is going well and that Emma Kate is about to go on heart/lung bypass. They will call us back in an hour.
Mommy and Daddy are doing well. Trying not to think too much about what all is going on. Kiki and Lito are here and we are telling funny stories. I will share one from yesterday:
So Bethany, Emma Kate and I were going through all of the pre-op things and of course Emma Kate was smiling and laughing at everyone. The first nurse smiled back and said "I bet your grandma just loves you!".
Now I thought that was an interesting thing to say but just thought that maybe she has grandchildren of her own.
The next nurse we saw during the echo was talking with Emma Kate and making her laugh. She looked at her and said, "I know your grandma loves you so much!"
So now I am puzzled. There is no doubt in my mind that Kiki and Nana love Emma Kate more than anything but this is just a weird thing to say. Is this a practice that Children's of Atlanta recommends? Are nurses told to mention the grandmother?
So we head down to get x-rays done and the nurse once again says, "Oh, I know your grandmother loves you!"
As she walked away, I looked at Bethany and said, "Isn't that strange? Why do all the nurses keep talking about her grandmother loving her??"
Bethany looked at me and pointed to Emma Kate's bib and said, "Brooks, her bib says My Grandma loves me".
So I guess the nurses are more observant than her daddy is. Which is definitely a blessing!
1.20.2009
Deja-Vu
We left Birmingham yesterday around 5:30 after saying goodbye to Anna Brooke and Nana. Emma Kate slept the entire trip and Bethany and I enjoyed watching the snow. It was a nice quiet ride that gave us time to mentally prepare for the next few days. We arrived in Atlanta around 9pm and checked into the RMH. We got in our room, fed EK, and passed out after watching an episode of the Office.
We woke up this morning and went to Egleston at 9:40 for our 10:00 pre-op appt. We were told to expect everything to last around 4 hours. When we walked in to the hospital, it was like we had never left. I can't put into words the emotions that came to mind as we rode the elevator to the 3rd floor. This is the same floor, the same waiting room, that we spent hours in waiting to hear about Emma Kate and her Norwood.
We went back to our room and prepared to begin the procedures. The first nurse checked EK's blood pressure and oxygen sats. Emma Kate spent this time chatting the nurse up and laughing at everything. (Her oxygen levels are ranging between 73 and 75). The anesthesiologist came in next and told us to have EK in tomorrow morning at 6am because her surgery will begin at 7:30am. It was during this time that I washed my hands. I hadn't smelled that soap in 4 1/2 months. The smell made my eyes fill with tears. All I could picture was my little 3 day old Emma Kate after having her first surgery. It is amazing how our senses remember.
The rest of the day was spent getting an echo, an xray, signing consent forms and lab work. We also got to talk with Dr. Kirshbom and he explained the Glenn (I will detail that tomorrow). He told us that he feels everything should go well and our stay should be about a week. Through all of this, Emma Kate had a smile on her face. She is such a joy!
Overall, the pre-op lasted 5 1/2 hours and left the three of us exhausted and hungry. We called our friends, Charles and Vanessa Giddens (whose son, Parker, was in the hospital in August with Emma Kate), and ate dinner with them. It was great to spend time with them outside of the CICU! After dinner, we gave Emma Kate a betadine bath and put her to bed. Bethany and I then prayed with our sleeping baby.
We prayed for God to give her strength tomorrow and over the days to come. Prayed for her heart specifically, that it would handle everything well. We prayed for wisdom for Dr. Kirshbom, Dr. Maxey and everyone else that will come in contact with Emma Kate. We prayed for rest for ourselves and for peace. And we prayed that through all of this, and through all things, that God and God alone would be glorified.
Tomorrow is just a few hours away and yet right now I am calm. I feel that we have done this before. It all feels too familiar. And I am praying for an amazing outcome. Tomorrow I may not be able to breathe but right now I know that my little miracle is stronger than any of this.
We woke up this morning and went to Egleston at 9:40 for our 10:00 pre-op appt. We were told to expect everything to last around 4 hours. When we walked in to the hospital, it was like we had never left. I can't put into words the emotions that came to mind as we rode the elevator to the 3rd floor. This is the same floor, the same waiting room, that we spent hours in waiting to hear about Emma Kate and her Norwood.
We went back to our room and prepared to begin the procedures. The first nurse checked EK's blood pressure and oxygen sats. Emma Kate spent this time chatting the nurse up and laughing at everything. (Her oxygen levels are ranging between 73 and 75). The anesthesiologist came in next and told us to have EK in tomorrow morning at 6am because her surgery will begin at 7:30am. It was during this time that I washed my hands. I hadn't smelled that soap in 4 1/2 months. The smell made my eyes fill with tears. All I could picture was my little 3 day old Emma Kate after having her first surgery. It is amazing how our senses remember.
The rest of the day was spent getting an echo, an xray, signing consent forms and lab work. We also got to talk with Dr. Kirshbom and he explained the Glenn (I will detail that tomorrow). He told us that he feels everything should go well and our stay should be about a week. Through all of this, Emma Kate had a smile on her face. She is such a joy!
Overall, the pre-op lasted 5 1/2 hours and left the three of us exhausted and hungry. We called our friends, Charles and Vanessa Giddens (whose son, Parker, was in the hospital in August with Emma Kate), and ate dinner with them. It was great to spend time with them outside of the CICU! After dinner, we gave Emma Kate a betadine bath and put her to bed. Bethany and I then prayed with our sleeping baby.
We prayed for God to give her strength tomorrow and over the days to come. Prayed for her heart specifically, that it would handle everything well. We prayed for wisdom for Dr. Kirshbom, Dr. Maxey and everyone else that will come in contact with Emma Kate. We prayed for rest for ourselves and for peace. And we prayed that through all of this, and through all things, that God and God alone would be glorified.
Tomorrow is just a few hours away and yet right now I am calm. I feel that we have done this before. It all feels too familiar. And I am praying for an amazing outcome. Tomorrow I may not be able to breathe but right now I know that my little miracle is stronger than any of this.
1.19.2009
Update This Afternoon... Four Months Later
So much for the updating when we got home. I guess you could say I got caught up in the life of my family and left Bethany to do the blogging. Not that I couldn't write a book on the last four months' experiences; I just chose to sleep when I got the chance.
Bethany and I were talking last night about the last 5 months. What a crazy world we have been living in. At times it feels like it was just yesterday while others feel like an eternity. This has been the hardest time of my life. And it has been the greatest. I will try my best to recap without writing the book I mentioned.
This journey will begin 19 days before Emma Kate was born.
On August 1st, I was let go from my job. While this didn't come as a complete shock, it felt like awful timing. Two weeks before Emma Kate was due and I was spending my time looking for a job. This was something that Bethany and I decided not to tell anyone about because we wanted the focus to be on Emma Kate. And I felt that surely I would find a job and start when we got back from Atlanta. Haha. I can laugh now because I know the outcome. Not as funny while it was going on.
Then, August 19th comes along and our miracle is born. And Bethany and I become grown-ups. Now, I know that we are both 27 and have been adults for several years and already parents, but August 19th changed us. Life gave grasp to a new meaning. Life is lived in the seconds, not in the years. And we learned to savor the seconds. Every second. Laughing became a true joy. And crying, too. And through all that happened with Emma Kate while in Atlanta, we learned that life is too short to stress over the little things. We learned that laughing is a much better remedy.
We got home in September and our house became a home. Bethany and I became a team. We took turns late at night preparing medicines/feeding tubes/etc. making sure that Emma Kate was taken care of. We took turns getting up early in the morning to watch Little Einsteins/Ni Hao Kai-lan/etc. with Anna Brooke. And we took turns wondering how bills were going to be paid. And God continued to reveal Himself to us every day/every hour/even every second.
Through September, October, November and December we learned the treasures that are Grace, Humility, and Love. We received so many acts of kindness and generosity, that I am humbled to write about it now. So many people reached out a hand and gave us support. Through all of our stresses and struggles, we saw the world as a good place. A place where people actually love and help one another. And even though we prayed every day that things would get better, we rejoiced in the help we were given. And even though things seemed so tough, they were all blessings.
Looking back, it was a blessing for me to be at home with Bethany, Anna Brooke and Emma Kate. I was able to spend time with both of my daughters that too often is taken for granted. I was able to watch my wife be the most incredible mother to my girls. And I was able to learn just a little bit of how to be a good father and husband. I think Bethany and I both grew up more than we know.
All this brings me to today.
Today, as I sit on my lunch break at a job that I could not have hand picked better for myself, I am mentally preparing for another trip to Atlanta. We are heading tonight to the Ronald McDonald House for step 2 in this 3 stage process. Emma Kate will have pre-op tomorrow and her Glenn will be sometime Wednesday. It is amazing that time has flown and crept by all at the same speed. We are scared to death for Emma Kate to have another surgery. But we are very ready to have the Glenn behind her. We are indebted to each of you more than you can imagine for your prayers and support. And I ask again to pray for Emma Kate. Please know that your prayers are being heard. And we are grateful that we receive the reward.
Bethany and I were talking last night about the last 5 months. What a crazy world we have been living in. At times it feels like it was just yesterday while others feel like an eternity. This has been the hardest time of my life. And it has been the greatest. I will try my best to recap without writing the book I mentioned.
This journey will begin 19 days before Emma Kate was born.
On August 1st, I was let go from my job. While this didn't come as a complete shock, it felt like awful timing. Two weeks before Emma Kate was due and I was spending my time looking for a job. This was something that Bethany and I decided not to tell anyone about because we wanted the focus to be on Emma Kate. And I felt that surely I would find a job and start when we got back from Atlanta. Haha. I can laugh now because I know the outcome. Not as funny while it was going on.
Then, August 19th comes along and our miracle is born. And Bethany and I become grown-ups. Now, I know that we are both 27 and have been adults for several years and already parents, but August 19th changed us. Life gave grasp to a new meaning. Life is lived in the seconds, not in the years. And we learned to savor the seconds. Every second. Laughing became a true joy. And crying, too. And through all that happened with Emma Kate while in Atlanta, we learned that life is too short to stress over the little things. We learned that laughing is a much better remedy.
We got home in September and our house became a home. Bethany and I became a team. We took turns late at night preparing medicines/feeding tubes/etc. making sure that Emma Kate was taken care of. We took turns getting up early in the morning to watch Little Einsteins/Ni Hao Kai-lan/etc. with Anna Brooke. And we took turns wondering how bills were going to be paid. And God continued to reveal Himself to us every day/every hour/even every second.
Through September, October, November and December we learned the treasures that are Grace, Humility, and Love. We received so many acts of kindness and generosity, that I am humbled to write about it now. So many people reached out a hand and gave us support. Through all of our stresses and struggles, we saw the world as a good place. A place where people actually love and help one another. And even though we prayed every day that things would get better, we rejoiced in the help we were given. And even though things seemed so tough, they were all blessings.
Looking back, it was a blessing for me to be at home with Bethany, Anna Brooke and Emma Kate. I was able to spend time with both of my daughters that too often is taken for granted. I was able to watch my wife be the most incredible mother to my girls. And I was able to learn just a little bit of how to be a good father and husband. I think Bethany and I both grew up more than we know.
All this brings me to today.
Today, as I sit on my lunch break at a job that I could not have hand picked better for myself, I am mentally preparing for another trip to Atlanta. We are heading tonight to the Ronald McDonald House for step 2 in this 3 stage process. Emma Kate will have pre-op tomorrow and her Glenn will be sometime Wednesday. It is amazing that time has flown and crept by all at the same speed. We are scared to death for Emma Kate to have another surgery. But we are very ready to have the Glenn behind her. We are indebted to each of you more than you can imagine for your prayers and support. And I ask again to pray for Emma Kate. Please know that your prayers are being heard. And we are grateful that we receive the reward.
Subscribe to:
Posts (Atom)
