Well, we got a phone call this morning at 7am to let us know that Emily is back in the NICU. She quite literally had her surgery sometime in the middle of the night...they prepped her at 11:30pm and it takes an hour for the drops to take, much less the anesthesia. They had to intubate her but were able to extubate her not long after she returned and she is back on her nasal canula and almost on to room air (no extra oxygen, but still helping push it into her lungs). I have not heard from the dr yet.
K, Grandma E and I are in Pasadena and M is at home. I was able to help give Em her bath yesterday and then hold her while she fell asleep. I am proud to report that she now has a butt, her lungs are disappearing under a layer of fat and her scar from heart surgery is barely noticeable. She must also have a pretty high pain threshold since they had to prick her foot and squeeze the blood out (for some test, don't remember which one) and she winced quick then fell back to sleep while they squeezed her foot. All I remember is K screaming bloody murder when they did that to test her bilirubin!
Oh, and she is 4 pounds, 9 ounces and 36 weeks gestational age...too weird to think I am supposed to still be prego! She is hitting so many milestones...regulating her own temperature and almost breathing on her own...just needs to start eating now. We will likely start trying that again when we get back to Loma Linda (hopefully early next week).
The life and adventures of two former MK's...and their new additions. Our first daughter was born full-term on Jan 19, 2009 and 10 short months later, our micro-preemie was born Nov 6, 2009 at 24w3d and 1 pound 6 ounces. Read her story and our journey below.
Saturday, January 30, 2010
Thursday, January 28, 2010
Hopefully Tomorrow
The dr looked at EG's eyes and the good news is that he can see most of the retina...something he wasn't able to see before because of the blood vessels and blood in the way. He wants to do laser surgery and then inject another round of avastin. She will have to go to the operating room to do this and he hopes to fit her in tomorrow afternoon. Please pray once again that she will not need to be intubated while she is sedated and then obviously that it will be a success. If she responds well, we could be headed 'home' early next week. So we will count on late next week.
On a side note per the last post, before that post had been up even an hour, I had four different people call me to let me know they were thinking about me and wanted to know how they could pray. God always has our back, doesn't he?! AND Bible study was about taking every thought captive...time to renew the fight. God Bless you all tonight!
On a side note per the last post, before that post had been up even an hour, I had four different people call me to let me know they were thinking about me and wanted to know how they could pray. God always has our back, doesn't he?! AND Bible study was about taking every thought captive...time to renew the fight. God Bless you all tonight!
Away from Home
I did not want to post this since we are in the midst of possibly getting sight for little Em but I have decided that I need some prayer as well. This latest trip has been hard on me and I wrote this in my journal last night.
"I have found over the past few days that I cannot really focus on much of anything and I notice it particularly when I try to pray. Honestly, I find that I really can’t pray. I can’t focus and when I tried to examine why, I couldn’t stay focused on that either. This was bothering me some but as I don’t have the strength to worry about anything, I just let it go.
As I was walking out of the hospital today, I had a vision of the root of a weed creeping its way into my heart and trying to take root. I realized quickly that fear and doubt were trying to get back in there and find a place from which to sprout. This scared me even more but I didn’t know what to do about it. And then my Dad called. I told him my concerns and among the things we discussed was the topic of being emotionally and mentally numb. It has been nearly three months since all this started with Emily and our family. In that time, we have recovered from surgery and the near loss of my life and the life of our daughter, we have gotten more colds than in the last three years total, K has been teething, learning to walk, talk, and trying not to get every cold M and I manage to find, we haven't slept (hardly at all), oh, and don’t forget making a million trips into the hospital, making a hundred different medical decisions for our ‘not yet born’ infant, pumping for four hours a day, and now traveling to Pasadena and staying with relatives while trying to keep life as normal as possible for our little girl that has to go through all this with us.
It has been overwhelming and the wear of three months of this is starting to show. What I believe is happening now is that my brain and my heart are finally shutting down. They are going into hiding so they don’t get crushed. The reserves are gone, everything is gone. I have poured out my heart to God so many times that I am just not sure I can even do it anymore."
I guess that says it. I find myself cycling through all the same emotions over and over, just at different times. I am back to being exhausted and wishing with all my being that this just wasn't my life...wanting to run away and wanting to stay in my house for an entire day, just relaxing. I know my life will never be the same but I just kind of miss the 'ease' of normal life right now...especially the routine and predictability...there is rest in knowing what the next day will most likely bring.
Well, one of the things my dad and I decided was that I am not allowed to think about the negative anymore...even if it means not thinking at all. So I am going to stop, go to my room and speak out loud the promises of God. I will tell God that I trust Him and I know the plans He has for me are good and that HE brought me here, therefore HE promised to get me through. He won't let me go and He won't leave me. So we carry on. Prayers for our emotional, mental and physical health and endurance are welcomed right now. Thanks. Will update tonight when we hear from the dr.
"I have found over the past few days that I cannot really focus on much of anything and I notice it particularly when I try to pray. Honestly, I find that I really can’t pray. I can’t focus and when I tried to examine why, I couldn’t stay focused on that either. This was bothering me some but as I don’t have the strength to worry about anything, I just let it go.
As I was walking out of the hospital today, I had a vision of the root of a weed creeping its way into my heart and trying to take root. I realized quickly that fear and doubt were trying to get back in there and find a place from which to sprout. This scared me even more but I didn’t know what to do about it. And then my Dad called. I told him my concerns and among the things we discussed was the topic of being emotionally and mentally numb. It has been nearly three months since all this started with Emily and our family. In that time, we have recovered from surgery and the near loss of my life and the life of our daughter, we have gotten more colds than in the last three years total, K has been teething, learning to walk, talk, and trying not to get every cold M and I manage to find, we haven't slept (hardly at all), oh, and don’t forget making a million trips into the hospital, making a hundred different medical decisions for our ‘not yet born’ infant, pumping for four hours a day, and now traveling to Pasadena and staying with relatives while trying to keep life as normal as possible for our little girl that has to go through all this with us.
It has been overwhelming and the wear of three months of this is starting to show. What I believe is happening now is that my brain and my heart are finally shutting down. They are going into hiding so they don’t get crushed. The reserves are gone, everything is gone. I have poured out my heart to God so many times that I am just not sure I can even do it anymore."
I guess that says it. I find myself cycling through all the same emotions over and over, just at different times. I am back to being exhausted and wishing with all my being that this just wasn't my life...wanting to run away and wanting to stay in my house for an entire day, just relaxing. I know my life will never be the same but I just kind of miss the 'ease' of normal life right now...especially the routine and predictability...there is rest in knowing what the next day will most likely bring.
Well, one of the things my dad and I decided was that I am not allowed to think about the negative anymore...even if it means not thinking at all. So I am going to stop, go to my room and speak out loud the promises of God. I will tell God that I trust Him and I know the plans He has for me are good and that HE brought me here, therefore HE promised to get me through. He won't let me go and He won't leave me. So we carry on. Prayers for our emotional, mental and physical health and endurance are welcomed right now. Thanks. Will update tonight when we hear from the dr.
Monday, January 25, 2010
Somewhat
The dr looked at Emily today and the drug seems to have cleared up some of the problems in Emily's eyes, but they are far from done. It is cleared up enough so he can see clearly and he would like to inject her again and then possibly do another laser surgery (at the same time). He will look at her again on Thursday and then decide if he will do it Friday or Monday.
The dr likes to describe this as a game of chess. Right now he feels like he has the upper hand but there are still several moves to be played. The good news is that he said she is responding to light so he thinks she has some vision (at least enough to respond to light). The bad news is that another laser surgery means even more of her vision lost. I know that sounds funny, but the laser that will save her vision is also destroying it...they burn the peripheral vision to save the central vision. Put your hands on the side of your head and slowly cut off more and more of your vision until you have tunnel vision and all you can see is what is directly in front of you. Each time they go in with the laser, she looses a bit more of her peripheral vision. But as M says, she only needs to be able to see a book to be a nerd. :)
It seems to me that this 'solve it by creating another problem' is the case for all things with her...we had to intebate her to keep her breathing and it was the intebation (and oxygen) that have given her chronic lung disease...we had to give her oxygen to keep her organs forming and just to keep her alive and it was that oxygen that gave her these eye problems...now we will give her some vision by destroying the rest. I get frustrated sometimes thinking about how we solve one problem by creating another. But then I try to remind myself that the problems seem to be getting smaller...I think. After all, vision is huge, but not compared to her life. And I don't want to sound negative. This whole thing is a good thing. I am incredibly grateful that we have this opportunity to try to save her vision and maybe the vision of many babies to follow.
Thank you for your prayers and please keep them up. Oh, I have a sinus infection but am now on antibiotics so I will go visit her tomorrow. M is doing well. K has almost popped yet another tooth through and is loving all the attention she gets here.
The dr likes to describe this as a game of chess. Right now he feels like he has the upper hand but there are still several moves to be played. The good news is that he said she is responding to light so he thinks she has some vision (at least enough to respond to light). The bad news is that another laser surgery means even more of her vision lost. I know that sounds funny, but the laser that will save her vision is also destroying it...they burn the peripheral vision to save the central vision. Put your hands on the side of your head and slowly cut off more and more of your vision until you have tunnel vision and all you can see is what is directly in front of you. Each time they go in with the laser, she looses a bit more of her peripheral vision. But as M says, she only needs to be able to see a book to be a nerd. :)
It seems to me that this 'solve it by creating another problem' is the case for all things with her...we had to intebate her to keep her breathing and it was the intebation (and oxygen) that have given her chronic lung disease...we had to give her oxygen to keep her organs forming and just to keep her alive and it was that oxygen that gave her these eye problems...now we will give her some vision by destroying the rest. I get frustrated sometimes thinking about how we solve one problem by creating another. But then I try to remind myself that the problems seem to be getting smaller...I think. After all, vision is huge, but not compared to her life. And I don't want to sound negative. This whole thing is a good thing. I am incredibly grateful that we have this opportunity to try to save her vision and maybe the vision of many babies to follow.
Thank you for your prayers and please keep them up. Oh, I have a sinus infection but am now on antibiotics so I will go visit her tomorrow. M is doing well. K has almost popped yet another tooth through and is loving all the attention she gets here.
Sunday, January 24, 2010
Hanging Out
Going for a walk...I know, it looks excessive, but it has been cold here! Plus, it is so stinking cute, we had to wear it at least once before she's too big.
It took all of two minutes of being in a new place for her to be pushing all the new buttons. We have listened to Enya all weekend.
Such a long day!
We don't speak of the reason she has that hat.
Eyes Done???
Well, Emily is getting her bath and they said she is 'fine'. The consult went well even though it sucked to find out that BOTH eyes were terrible and she needed the procedure in both eyes. She is in the 10% of babies on whom the laser failed and that is why we are up here.
So...this dr is not just pretty good, he is a pediatric vitreo retinal specialist and the first dr to try this procedure in the world and the only one who does it in the state of CA (Tawansy for those who want to look him up). The drug is called avastin and is still experimental in babies. Since they have only been doing this for four years, the biggest risk is that we have no idea what the long term side effects will be. There are three choices of treatment when you reach this point and it was the drs opinion that steroids would not be strong enough and there was too much blood in her eyes to make a second go at laser reasonable. Without intervention, she was a shoe-in to go blind. With this procedure, she has an 80% chance of getting at least some vision back - how much, we cannot know.
Please continue praying for her recovery and continued healing.
So...this dr is not just pretty good, he is a pediatric vitreo retinal specialist and the first dr to try this procedure in the world and the only one who does it in the state of CA (Tawansy for those who want to look him up). The drug is called avastin and is still experimental in babies. Since they have only been doing this for four years, the biggest risk is that we have no idea what the long term side effects will be. There are three choices of treatment when you reach this point and it was the drs opinion that steroids would not be strong enough and there was too much blood in her eyes to make a second go at laser reasonable. Without intervention, she was a shoe-in to go blind. With this procedure, she has an 80% chance of getting at least some vision back - how much, we cannot know.
Please continue praying for her recovery and continued healing.
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