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
2.22.2009
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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