This has proven to be a very long week. On Wednesday we had another visit to the specialist in Topeka. I knew this visit was not going to turn out well when I fertilized the front courtyard of the hospital with my tummy contents before we even got in the door. I really wasn't feeling well, but we made the trip anyway. We were a little early, as usual, but I begged the nursing staff to see if the doc would give me something to settle my tummy. The doctor took me in right away and planned to send m up to their Labor and Delivery section immediately. He told me that he suspected the baby was gone. When we looked at the ultrasound she had a normal, strong heartbeat. The effects of the Turner's Syndrome were devastating. She is definitely struggling. The ultrasound tech made the comment that "she is certainly one resilient little baby." The doctor commented that he was really surprised that the baby's heart is still beating. All of this would be encouraging, but the prognosis is the same. We're tired....so tired.
I went back to work and continued to feel bad, so the docs at my hospital put me on "The Monitor" fora while. I took and IV, some additional drugs and was passed out in no time. There were no contractions, but small "irritations" that showed up from being sick. They sent me home for rest and then I went back in on Friday as well. They did another heartbeat check and another session of monitoring and there has still been no change. I haven't felt well lately, but Emma seems to be doing okay given her challenges.
This week I have also had to resort to pulling out the maternity clothes. I had hoped to avoid this, but t over 20 weeks, the pregnancy is becoming obvious.
On a good note, we were able to visit some friends this weekend. They were just a short drive away. We really enjoyed ourselves and appreciated some time away from this area. We have sort of been glued to our neighborhood for the past few months because we are concerned about travelling too far away from the hospital. This was a perfect trip because we were able to get away without being too far to drive home. Such a nice break!
Sunday, March 22, 2009
Sunday, March 15, 2009
Warming up in March
I really don't have much news to report on Emma Grace at this point. I went in for an ultrasound this week and everything is exactly the same. She is growing much larger and still has a very large hygroma. Her heartbeat, surprisingly, is still very strong and completely normal. Despite looking at a grainy ultrasound, we could still see the separate valves in the heart. It was beating very, very strongly, despite the obvious problem created by all of her swelling and edema. Almost four weeks ago the doctor scheduled an appointment for March 18th, making the comment that "I doubt you will still be pregnant then." Despite all of this, we are almost at March 18 and I am very much still pregnant. I am bulging gout of my larger clothes and am almost in need of maternity clothes. I requested the ultrasound this week because I was starting to experience a small glimmer of hope that perhaps the hygroma was resolving, but the ultrasound confirmed our expectations: the problem is not resolving and the poor prognosis is the same. Emma just seems to be more resilient than the docs expected, I suppose.
Someone who is familiar with Emma's condition asked me this week for specific prayer requests. I was a little caught off guard, but I told him that we basically have two prayer requests. The first one is the obvious choice for us, a prayer that Emma's condition will resolve and we will have a fairly healthy little girl to hold in our arms in just a few months. This is not very realistic given what we know. The second request is that if this is all going to end, we would like i to b over soon. We are concerned about Emma's suffering and do not want to hold on to her if she is in pain or suffering. This is also difficult on us emotionally and physically difficult for me. If this is not going to have a happy ending, we want to relieve everyone's suffering and move on with our lives.
On a happier note, we have been getting out and doing family activities lately. On Saturday Tim and I ran in a 2 mile St. Patrick's Day Fun Run. This race has been somewhat of a tradition for us. I have run the 10K portion of the race for the last two years, starting the year I was pregnant with Timmy. This year I am a lot further along in the pregnancy and opted for the lighter 2 mile event. Tim ran the 10K with me last year and also opted for the 2 Miler this year. He pushed Timmy in a stroller and I dragged Chance along with me. Surprisingly, he lasted the entire race and we finished strong. Our time was terrible, but we had a lot of fun. It was great to get outdoors for an entire afternoon and the weather was perfect for a run. We saw lots of our friends and really enjoyed the festivities.
I have enclosed some pictures. I do not post many pictures of Tim, so I have included one from two weeks ago when he went to Topeka to shoot sporting clays at a local club. He had a blast and has been talking about it ever since.
Someone who is familiar with Emma's condition asked me this week for specific prayer requests. I was a little caught off guard, but I told him that we basically have two prayer requests. The first one is the obvious choice for us, a prayer that Emma's condition will resolve and we will have a fairly healthy little girl to hold in our arms in just a few months. This is not very realistic given what we know. The second request is that if this is all going to end, we would like i to b over soon. We are concerned about Emma's suffering and do not want to hold on to her if she is in pain or suffering. This is also difficult on us emotionally and physically difficult for me. If this is not going to have a happy ending, we want to relieve everyone's suffering and move on with our lives.
On a happier note, we have been getting out and doing family activities lately. On Saturday Tim and I ran in a 2 mile St. Patrick's Day Fun Run. This race has been somewhat of a tradition for us. I have run the 10K portion of the race for the last two years, starting the year I was pregnant with Timmy. This year I am a lot further along in the pregnancy and opted for the lighter 2 mile event. Tim ran the 10K with me last year and also opted for the 2 Miler this year. He pushed Timmy in a stroller and I dragged Chance along with me. Surprisingly, he lasted the entire race and we finished strong. Our time was terrible, but we had a lot of fun. It was great to get outdoors for an entire afternoon and the weather was perfect for a run. We saw lots of our friends and really enjoyed the festivities.
I have enclosed some pictures. I do not post many pictures of Tim, so I have included one from two weeks ago when he went to Topeka to shoot sporting clays at a local club. He had a blast and has been talking about it ever since.
Wednesday, March 4, 2009
Rob Yllescas and "The Small Things"
Sometimes when we experience personal tragedy or setbacks in our lives, we have a tendency to put on our “blinders” and miss the small “little things” that allow us to experience joy in our lives. Often the newness of a tragedy makes us emotionally unprepared to experience joy for a period of time, and I believe that this is normal and sometimes appropriate. With our recent experiences in the loss of our dear friend Rob and the unexpected diagnosis of a genetic disorder in my pregnancy with Emma, we have had to look hard sometimes to notice the small things that are provided in our lives as a means to separate us from our grief. Sometimes these are obvious, other times they are not. We don’t intend to make light of our experiences with Emma’s medical concerns, or reduce our visits to the specialist in Topeka to a discussion of pancakes and syrup. However, sometimes we have literally received absolutely no good news and left the office in tears, and the ONLY positive thing we can draw from the experience is eating good pancakes and syrup.
I had an experience over the past week that has reminded me of the importance of recognizing the “little things” that are present in our lives to alleviate pain, as long as we are open to the experience. My experience hinges on our friend, Rob Yllescas who passed away in December after being wounded in Afghanistan in October of this past year. Rob was a dear friend, and Tim and I consider he and his wife, Dena, to be in our circle of “Army next-of-kin.” If we could choose our family, we would choose the Yllescases. Anyway, in order to understand the significance of my experience this week, I will relate some good memories that I have of Rob.
I was deployed to Iraq with Rob and Tim in 2005. Rob was a very capable officer who was given a variety of tough tasks that often required him to be “outside the wire” and in harm’s way. Rob and I would often meet up in the DFAC, usually at breakfast and talk about all sorts of things. The DFAC usually had several televisions playing the news and the beloved AFN commercials. One of these commercials depicted a bunch of people walking peacefully on beaches and connecting in a bunch of very cheesy ways. It was an advertisement for some peace organization, which was a little unusual since most commercials created on AFN are Army-sponsored and remind us of important things like wearing helmets on motorcycles (in Iraq). Anyway, the theme song for this commercial was just as cheesy as the scenes it depicted. I do not know the name of the song or who sings it, but I believe it came out in the 80’s. So, cue 80’s music:
“And we can build this dream together, standing here forever,
Nothing’s gonna stop us now…
And when this world runs out of lovers, we’ll still have each other,
Nothing’s gonna stop us now….”
Anyway, whether he wanted to admit it or not, Rob was obviously familiar with this song. There were a few times when it came on that he would sing it at an uncomfortably loud volume, sometimes grabbing my shoulders or pretending to wave an imaginary cigarette lighter. This song played in the DFAC a lot, but usually Rob gave this reaction after a long day (or night) when he needed to lighten the mood. He had a way of bringing humor to difficult situations and making the mood lighter. This was one of the best qualities I remember about him.
Anyway, to appreciate the humor and irony of this situation, it needs to be considered in its context: Here we are, in Iraq, and Rob is sitting at the table recounting the latest firefight or IED explosion that he inexplicably walked away from. (I used to think Rob Yllescas was the luckiest Soldiers alive after some of his experiences). We are surrounded by violence on a daily basis and are discussing Rob’s personal experiences when our conversation is interrupted by an overly cheesy peace commercial that suggests that we should all just hold hands and sing “Kumbaya.” Pretty ironic, but you probably had to be there.
Anyway, after Rob was hurt in October, this small experience has stuck in my mind as a memory of Rob that still bring s smile to my face. It was so small and insignificant that I doubt Rob would even remember doing it if asked about it when we returned in 2006. I think the reason it sticks out in my mind is because it is a good illustration of one of Rob’s strengths, which was his ability to put experiences into perspective and draw out humor.
I focused on this memory as I prayed for Rob’s recovery in October and November and later went to his funeral in December. For the LIFE OF ME, I could not recall the song that goes with the memory. This has been something that has annoyed me for four and half months, until I heard the song playing in an adjacent office last week. As soon as I heard it, the memories came flooding back and it brought a smile to my face (literally). I was so excited to finally recall the song that has been nagging me for months that I wrote it down on a little sticky note. There have been several times this last week that that little sticky note has managed to get stuck to half a million things. Each time I would pull it off of a stack of paperwork, I would recall Rob and his sense of perspective and humor. It always brought a smile to my face. It s no secret that the last few months have been a very trying time in our lives, but I am grateful for this very small opportunity to appreciate some of the blessings we have received in our lives. One of these blessings is Rob Yllescas. Whereas we are definitely still grieving for him and bearing the pain of his loss, I am still glad that we had the opportunity to experience his friendship. I am disappointed that our time with him was cut short, but I am grateful for the memories and life lessons that he gave to us. We will carry those with us forever. Rob never got to hear the news or our initial excitement about our pregnancy or hear about our grief over the miscarriage. However, I still feel his presence in our lives, even if it is through memories.
This very small experience would have been very easy to ignore without an open mind. It would have been easy to forget the memory in the DFAC or overlook the significance of the continuous re-appearance of the sticky note. It is a reminder that it is important to keep an open mind an focus on the positive blessings of our lives, however small they may seem sometimes. I initially wrote the sticky note so that I could commit the song to my memory. This week, I finally disposed of the sticky note and chose to commit the experience and lesson to my memory.
I had an experience over the past week that has reminded me of the importance of recognizing the “little things” that are present in our lives to alleviate pain, as long as we are open to the experience. My experience hinges on our friend, Rob Yllescas who passed away in December after being wounded in Afghanistan in October of this past year. Rob was a dear friend, and Tim and I consider he and his wife, Dena, to be in our circle of “Army next-of-kin.” If we could choose our family, we would choose the Yllescases. Anyway, in order to understand the significance of my experience this week, I will relate some good memories that I have of Rob.
I was deployed to Iraq with Rob and Tim in 2005. Rob was a very capable officer who was given a variety of tough tasks that often required him to be “outside the wire” and in harm’s way. Rob and I would often meet up in the DFAC, usually at breakfast and talk about all sorts of things. The DFAC usually had several televisions playing the news and the beloved AFN commercials. One of these commercials depicted a bunch of people walking peacefully on beaches and connecting in a bunch of very cheesy ways. It was an advertisement for some peace organization, which was a little unusual since most commercials created on AFN are Army-sponsored and remind us of important things like wearing helmets on motorcycles (in Iraq). Anyway, the theme song for this commercial was just as cheesy as the scenes it depicted. I do not know the name of the song or who sings it, but I believe it came out in the 80’s. So, cue 80’s music:
“And we can build this dream together, standing here forever,
Nothing’s gonna stop us now…
And when this world runs out of lovers, we’ll still have each other,
Nothing’s gonna stop us now….”
Anyway, whether he wanted to admit it or not, Rob was obviously familiar with this song. There were a few times when it came on that he would sing it at an uncomfortably loud volume, sometimes grabbing my shoulders or pretending to wave an imaginary cigarette lighter. This song played in the DFAC a lot, but usually Rob gave this reaction after a long day (or night) when he needed to lighten the mood. He had a way of bringing humor to difficult situations and making the mood lighter. This was one of the best qualities I remember about him.
Anyway, to appreciate the humor and irony of this situation, it needs to be considered in its context: Here we are, in Iraq, and Rob is sitting at the table recounting the latest firefight or IED explosion that he inexplicably walked away from. (I used to think Rob Yllescas was the luckiest Soldiers alive after some of his experiences). We are surrounded by violence on a daily basis and are discussing Rob’s personal experiences when our conversation is interrupted by an overly cheesy peace commercial that suggests that we should all just hold hands and sing “Kumbaya.” Pretty ironic, but you probably had to be there.
Anyway, after Rob was hurt in October, this small experience has stuck in my mind as a memory of Rob that still bring s smile to my face. It was so small and insignificant that I doubt Rob would even remember doing it if asked about it when we returned in 2006. I think the reason it sticks out in my mind is because it is a good illustration of one of Rob’s strengths, which was his ability to put experiences into perspective and draw out humor.
I focused on this memory as I prayed for Rob’s recovery in October and November and later went to his funeral in December. For the LIFE OF ME, I could not recall the song that goes with the memory. This has been something that has annoyed me for four and half months, until I heard the song playing in an adjacent office last week. As soon as I heard it, the memories came flooding back and it brought a smile to my face (literally). I was so excited to finally recall the song that has been nagging me for months that I wrote it down on a little sticky note. There have been several times this last week that that little sticky note has managed to get stuck to half a million things. Each time I would pull it off of a stack of paperwork, I would recall Rob and his sense of perspective and humor. It always brought a smile to my face. It s no secret that the last few months have been a very trying time in our lives, but I am grateful for this very small opportunity to appreciate some of the blessings we have received in our lives. One of these blessings is Rob Yllescas. Whereas we are definitely still grieving for him and bearing the pain of his loss, I am still glad that we had the opportunity to experience his friendship. I am disappointed that our time with him was cut short, but I am grateful for the memories and life lessons that he gave to us. We will carry those with us forever. Rob never got to hear the news or our initial excitement about our pregnancy or hear about our grief over the miscarriage. However, I still feel his presence in our lives, even if it is through memories.
This very small experience would have been very easy to ignore without an open mind. It would have been easy to forget the memory in the DFAC or overlook the significance of the continuous re-appearance of the sticky note. It is a reminder that it is important to keep an open mind an focus on the positive blessings of our lives, however small they may seem sometimes. I initially wrote the sticky note so that I could commit the song to my memory. This week, I finally disposed of the sticky note and chose to commit the experience and lesson to my memory.
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