I thought yesterday would be my final post before Christmas. However, today we did make a Christmas Eve trip to the cardiologist where our echocardiogram technician reported that everything looks good - the valve has closed (at least that's what we're interpreting from him) and Ellen has achieved another graduation date! Of course we're receiving it as a great Christmas present from her (and our great God!). We had lunch afterward and our waitress wondered how old she was...a month, she guessed. So, although it seems that our little girl is growing up so fast, she is still pretty little.
Merry Christmas Eve to all...I think Santa is on his way on the firetruck...that's New Jersey style...
December 24, 2009
December 22, 2009
Another Graduation Day
I've got a few more pictures to post but first, the news. Ellen had her second visit with the pulmonologist today. At our first visit back in October we were (naively) hopeful that she would no longer need the apnea monitor she'd been attached to since birth. At that visit, however, they told us we could wean her off it. Today, after two months of weaning, Jeanine took her back and we're VERY pleased to report that she has graduated yet again. No more monitor necessary! We've all been so blessed that her progress has been so steady. Her weight today was 11 pounds, 15 ounces (with onesie and diaper on). No, she's not walking yet. Nor dating.
We're looking forward to both sets of parents coming out (weather permitting) in the next couple of weeks. Ellen will be baptized on Sunday, January 3 at RCRC (271 Lincoln Ave., Ridgewood, NJ) during the morning service - 10:30 AM. It's been a long journey already to this point but we're ready to celebrate Christmas, New Year's, and a baptism with our friends and family. If you're in town (or want to be), please come for the celebration.
And now, the pictures with info.
The belt is off! At least two of us are happy about it...
After Sunday evening's Service of Lessons and Carols...Ellen in one of her Christmas dresses.
Just a little cuddle time.
This will probably be the last post before Christmas. We go to see the cardiologist on Christmas Eve for an echocardiogram to see if her PFO (https://health.google.com/health/ref/Patent+foramen+ovale) has closed. We won't know the results of the test for at least a week. Given the nature of the week, it will probably be more like two weeks. Anyway, we're hopeful it will provide for more celebration when the results are available. And when we know, we'll let you know!
Thanks for your continued thoughts and prayers on our behalf. May God bless you and yours this season and always.
We're looking forward to both sets of parents coming out (weather permitting) in the next couple of weeks. Ellen will be baptized on Sunday, January 3 at RCRC (271 Lincoln Ave., Ridgewood, NJ) during the morning service - 10:30 AM. It's been a long journey already to this point but we're ready to celebrate Christmas, New Year's, and a baptism with our friends and family. If you're in town (or want to be), please come for the celebration.
And now, the pictures with info.
The belt is off! At least two of us are happy about it...
After Sunday evening's Service of Lessons and Carols...Ellen in one of her Christmas dresses.
Just a little cuddle time.
This will probably be the last post before Christmas. We go to see the cardiologist on Christmas Eve for an echocardiogram to see if her PFO (https://health.google.com/health/ref/Patent+foramen+ovale) has closed. We won't know the results of the test for at least a week. Given the nature of the week, it will probably be more like two weeks. Anyway, we're hopeful it will provide for more celebration when the results are available. And when we know, we'll let you know!
Thanks for your continued thoughts and prayers on our behalf. May God bless you and yours this season and always.
December 17, 2009
More Better
I've been compelled to write again here. Though I don't know exactly what that may be yet, I'm sure it will come as I go. First, a few pictures. I've posted many on Facebook but some of you readers and followers are not on FB. These are from last week (I think) when Ellen awoke. She's usually pretty smiley now when she wakes up. We're also learning that she likes to lie on her back and swing her arms and kick her legs...a budding swimmer perhaps? Stay tuned. Anyway, the pictures:
First, a few updates on the medical front. We have appointments scheduled next week Tuesday with the pulmonologist and Thursday with the cardiologist. The pulmonologist will check the development of her lungs and (hopefully) authorize the removal of the apnea monitor. The machine has become like a fifth appendage, though we're allowed to take it off when feeding or playing with Ellie. We've come to rely on it, however, when she's sleeping. No alarms for several weeks, but somehow when it comes off full time I think we'll still worry about whether or not she's breathing when she's sleeping. Just a hunch. The cardiologist will perform an echocardiogram to check the progress of a valve that had not closed yet when she was born. There is no real alarm here, but simply checking progress. They assure us that this is a very common and benign thing. We'll take "their" word for it.
Beyond the medical realities, we're both experiencing new realities in parenting and grieving. Jeanine was reading in a book last week about how best to carry on the memory of a lost child (in our case, Lily). It was interesting to listen to the suggestions, especially for the holidays and how this book emphasized talking to your living child about his or her twin. They wrote about how your child knows intuitively that they were a twin and will communicate with her even at a very young age. No doubt we'll both watch closely for that. We've been given several small (I'll call them) figurines in Lily's memory and her gravestone has now been place in the cemetery. Jeanine is also working on a Christmas stocking for her. We attended The Messiah last night at Lincoln Center and both of us cried at some point, for varying reasons. Needless to say, the pain of loss is still very present. I suspect it will be for some time and others have indicated that it shows up in unexpected places. We have been working through it. Last month we attended a group therapy session specifically for those who have lost pregnancies. It was helpful. In preparing to preach at the end of the year, I've been drawn to the idea of remembering and what role remembering plays in life. God emphasized a long memory to the Israelites as they journeyed to the Promised Land. But other things he displayed a short memory, especially as it relates to their sins. Something I intend to explore over the next couple of weeks...remembering..."memento".
In the meantime, we're really enjoying parenthood. Ellen seems to be happy in the morning and less so at night. Many have told me this is quite typical with babies. I'll take their word(s) for it. After hearing a report on NPR about an iphone app that is supposed to be able to interpret babies' cries, we've taken on the new challenge of attempting to interpret them ourselves. I have noticed recently that she has figured out that if she takes a deep breath she can really belt it out. I find it funny...she does not. Ellen that is. I think it probably just makes her even more angry. Jeanine finds it slightly annoying that I think it's funny.
How to conclude such a post? I think the only way is to say thank you. You have been making the journey with us this year. What an unbelievable story...and you're a part of it. So thank you. Your (virtual) presence means more than you realize. My hope is to provide more regular musings in the coming months. And pictures, of course (that's for you, Virginia). Merry Christmas to you all, and if you're in the area over the holidays or anytime for that matter, drop by for a visit here or at the church.
First, a few updates on the medical front. We have appointments scheduled next week Tuesday with the pulmonologist and Thursday with the cardiologist. The pulmonologist will check the development of her lungs and (hopefully) authorize the removal of the apnea monitor. The machine has become like a fifth appendage, though we're allowed to take it off when feeding or playing with Ellie. We've come to rely on it, however, when she's sleeping. No alarms for several weeks, but somehow when it comes off full time I think we'll still worry about whether or not she's breathing when she's sleeping. Just a hunch. The cardiologist will perform an echocardiogram to check the progress of a valve that had not closed yet when she was born. There is no real alarm here, but simply checking progress. They assure us that this is a very common and benign thing. We'll take "their" word for it.
Beyond the medical realities, we're both experiencing new realities in parenting and grieving. Jeanine was reading in a book last week about how best to carry on the memory of a lost child (in our case, Lily). It was interesting to listen to the suggestions, especially for the holidays and how this book emphasized talking to your living child about his or her twin. They wrote about how your child knows intuitively that they were a twin and will communicate with her even at a very young age. No doubt we'll both watch closely for that. We've been given several small (I'll call them) figurines in Lily's memory and her gravestone has now been place in the cemetery. Jeanine is also working on a Christmas stocking for her. We attended The Messiah last night at Lincoln Center and both of us cried at some point, for varying reasons. Needless to say, the pain of loss is still very present. I suspect it will be for some time and others have indicated that it shows up in unexpected places. We have been working through it. Last month we attended a group therapy session specifically for those who have lost pregnancies. It was helpful. In preparing to preach at the end of the year, I've been drawn to the idea of remembering and what role remembering plays in life. God emphasized a long memory to the Israelites as they journeyed to the Promised Land. But other things he displayed a short memory, especially as it relates to their sins. Something I intend to explore over the next couple of weeks...remembering..."memento".
In the meantime, we're really enjoying parenthood. Ellen seems to be happy in the morning and less so at night. Many have told me this is quite typical with babies. I'll take their word(s) for it. After hearing a report on NPR about an iphone app that is supposed to be able to interpret babies' cries, we've taken on the new challenge of attempting to interpret them ourselves. I have noticed recently that she has figured out that if she takes a deep breath she can really belt it out. I find it funny...she does not. Ellen that is. I think it probably just makes her even more angry. Jeanine finds it slightly annoying that I think it's funny.
How to conclude such a post? I think the only way is to say thank you. You have been making the journey with us this year. What an unbelievable story...and you're a part of it. So thank you. Your (virtual) presence means more than you realize. My hope is to provide more regular musings in the coming months. And pictures, of course (that's for you, Virginia). Merry Christmas to you all, and if you're in the area over the holidays or anytime for that matter, drop by for a visit here or at the church.
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