Monday, September 21, 2009
Emma Update ...
Emma has been off oxygen support for over twelve hours now. She continues to sat in the 90s, with no desaturations. (That means her oxygen levels have not fallen below 85%.) She is still on minimal amounts of feeds, which they are slowly increasing every two to three days. But it is her respiratory status that is such a miracle. Her lungs are healing themselves despite all the damage three months of ventilation caused. We were sure we would be bringing home an oxygen-dependent infant, and that she would require such support for years. This truly is amazing news.
Friday, September 18, 2009
Another Week, Another Review ...
Yes, another week gone bye ... Another week of schooling ... another week of house-keeping tasks and bill-paying and trips to the hospital and thrice-daily phone calls to hear updates on Emma ... another week of life.
School is going well. We have a routine, albeit not as structured as I would like due to circumstances, but it is resulting in work getting done and learning taking place. I have re instituted certain facets of the Latin-Centered Curriculum that had fallen to the way-side and things always seem to be better when I do that. Daily review, multum non multa, Latin getting its due ... We are doing well with our emphasis on Fine Arts, too. The girls are teaching themselves how to play the keyboard, and the guitar. The boys are heavily into drawing. Our weekly studies of composers with The History of Classical Music as our spine is going so well. The Beautiful Feet Books guide is such an easy syllabus to which to add - I love to tweak our studies, and never use guides as written. This one gives just enough to be complete in its own, yet leaves ample room for embellishment. It is a pleasure to use, and I am intending on researching their other offerings. I have already decided to use the History of Science next year for my oldest daughter before she begins the more formal study of science in eighth grade.
Emma is doing well again. It is wonderful to be able to walk into the nursery and pick her up from her crib. She is still on oxygen, albeit a very low amount. She still has a Broviac catheter in her chest. She is still on TPN, but her volume of feeds is being increased every few days, as tolerated. Any indication of distress on her part could be indicative of an intestinal stricture and would necessitate surgery. The pace of her recovery is excruciatingly slow ... most especially to me. And while it is wonderful to hear the praise of the doctors and nurses as to her progress, it is difficult to leave her in their care after spending a mere two to four hours with her, twice a week. They know her much better than I do. Money, time constraints, and other responsibilities prevent me from being with her more than that. Between gas, tolls, and parking fees, it costs $50 to go to the hospital. That is $100 per week, $400 per month for a family that was just making it prior to this ... situation. At this point, the best we can hope for is that Emma can be increased on her feeds, without further illness, and that she may come home in the near future. No small order for a child who has lived 140 plus days in a hospital, and is still only five very small pounds.
School is going well. We have a routine, albeit not as structured as I would like due to circumstances, but it is resulting in work getting done and learning taking place. I have re instituted certain facets of the Latin-Centered Curriculum that had fallen to the way-side and things always seem to be better when I do that. Daily review, multum non multa, Latin getting its due ... We are doing well with our emphasis on Fine Arts, too. The girls are teaching themselves how to play the keyboard, and the guitar. The boys are heavily into drawing. Our weekly studies of composers with The History of Classical Music as our spine is going so well. The Beautiful Feet Books guide is such an easy syllabus to which to add - I love to tweak our studies, and never use guides as written. This one gives just enough to be complete in its own, yet leaves ample room for embellishment. It is a pleasure to use, and I am intending on researching their other offerings. I have already decided to use the History of Science next year for my oldest daughter before she begins the more formal study of science in eighth grade.
Emma is doing well again. It is wonderful to be able to walk into the nursery and pick her up from her crib. She is still on oxygen, albeit a very low amount. She still has a Broviac catheter in her chest. She is still on TPN, but her volume of feeds is being increased every few days, as tolerated. Any indication of distress on her part could be indicative of an intestinal stricture and would necessitate surgery. The pace of her recovery is excruciatingly slow ... most especially to me. And while it is wonderful to hear the praise of the doctors and nurses as to her progress, it is difficult to leave her in their care after spending a mere two to four hours with her, twice a week. They know her much better than I do. Money, time constraints, and other responsibilities prevent me from being with her more than that. Between gas, tolls, and parking fees, it costs $50 to go to the hospital. That is $100 per week, $400 per month for a family that was just making it prior to this ... situation. At this point, the best we can hope for is that Emma can be increased on her feeds, without further illness, and that she may come home in the near future. No small order for a child who has lived 140 plus days in a hospital, and is still only five very small pounds.
Friday, September 11, 2009
Weekly Review ...
We finished Week #13 of our school year. This was the first week of our second 12-week term, and I had typed up a six-week schedule for each of the kids. I only put down what I wanted accomplished in a week, rather than a schedule for each day. It really was a much better system, and we managed to do everything on the list.
Another change I made was to give our Fine Arts program a place as a Core part of our studies, instead of relegating it to "Well, if we get to it ...". The more research I do on classical studies, the more I realize how important this part of educating a whole person is. Even drawing was considered an important element in the classical studies of yesterday.
This week, we listened to Vivaldi's Ring of Mystery by Classical Kids. Vivaldi has been our composer of focus for about two weeks now, and the children have learned a great deal. They have drawn pictures depicting each of the seasons from The Four Seasons, and have learned about life at The Pieta. In art appreciation, we read about Monet, colored pictures using his style, focusing on the role of light in the scene, learned a bit about The Impressionists, and watched Linnea in Monet's Garden.
Another change I made was to give our Fine Arts program a place as a Core part of our studies, instead of relegating it to "Well, if we get to it ...". The more research I do on classical studies, the more I realize how important this part of educating a whole person is. Even drawing was considered an important element in the classical studies of yesterday.
This week, we listened to Vivaldi's Ring of Mystery by Classical Kids. Vivaldi has been our composer of focus for about two weeks now, and the children have learned a great deal. They have drawn pictures depicting each of the seasons from The Four Seasons, and have learned about life at The Pieta. In art appreciation, we read about Monet, colored pictures using his style, focusing on the role of light in the scene, learned a bit about The Impressionists, and watched Linnea in Monet's Garden.
We have accomplished so much - I am so thankful for the children's positive attitude despite the extenuating circumstances. Emma is finished with her antibiotics and began feedings again yesterday - 1 ml per hour. It is such a tiny amount, yet they are monitoring her closely for any sign of distress. It is going to be a while yet before she joins us here at home. The reality of that is a bit harder to handle now, simply because I can no longer think of her absence as part of my "pregnancy" - my due date has passed. No longer will the mental game I was playing with myself to cope with the situation suffice - my mind and body know the truth.
Finally, simply because of the significance of today's date, I will say: For some things, I have no words, no comments, nothing which will capture the emotion ... For some things, only prayer will do.
Tuesday, September 8, 2009
Athens versus Sparta ...
A quick drive to the local dairy took me past the high school. Lo and behold, a school that has cut all fine arts programming has somehow found the funds for a new scoreboard and a fancy new John Deere tractor-type thingy with which to traipse all over the fields, supplying the athletes (football players) with liquid refreshments. This is the same school that somehow financed a brand new, state-of-the-art athletic facility (once again, for the football team) just a few years ago. It is amazing to me that, in these hard economic times, these particular items were deemed important enough to receive funding. I just don't know how they do it - the school district, that it. Where are they getting the money to ... hmmm, let me think ...
Friday, September 4, 2009
Friday, August 28, 2009
Twist of Fate...
I have been ill with pneumonia for over one month now. In that time, Emma was taken off the ventilator, weaned from the CPAP, slowly lost dependency on the Vapotherm, and was finally placed on nasal cannula with oxygen at only 21% - essentially, room air. I received such words of encouragement from the hospital staff about how well she was doing, how great she looked, and how she would soon be home. She was being dressed for the first time in her three and one-half months of life, and she was gazing up at the nurses, and she cried her first cries. I spent the past few weeks listening to these reports of progress, and aching to see her for myself - to see her clothed and swaddled like a "real" newborn, to witness the face that lay beneath tape and plastic. Yesterday was the day - the day I was finally well enough to go to her. And as I walked through the NICU doors, a doctor greeted me with, "Are you Emma's mom?", and I knew - I knew without any further words - that something was wrong, that I was not to hold her that day, and that it would not be "soon" that she was coming home.
Emma is sick - again. NEC - again. Her stools were bloody, so they X-rayed and her intestines have air in them - again. Visions of sitting by her side as they re-intubated her filled my head. How can I go through that again - how can she? I wanted to dress her in the tiny clothes I brought from home, the ones I lovingly laundered and folded and placed in the box labelled with her first day of life picture. I did not want to watch as they placed a catheter in her and collected urine specimens, or pricked her heel for blood, or discussed the results of the X-rays. I wanted the healthy Emma, the one who has beaten all odds to still be here.
But this is not about what I want. It is about Emma, and her strength, and the expertise of the physicians and nurses at the hospital. So I spent as much time with her as I could, and had to leave to get back to the other children. And I have called about a dozen times since leaving. While there was some concern last night about viruses, so far there has not been a positive culture. So we wait for the antibiotics to do their job, and for Emma to continue to exhibit the strength and grace that has brought her so far on her journey. She is beautiful and spirited. She has big blue eyes, and a hearty little cry. She remains on the nasal cannula at the moment. I did not get to hold her, but I did get to whisper to her about what awaits her when she finally comes home - the siblings who will vie for her attention, the puppy who will lick her toes and make her giggle, and the crazy relatives who she will have to figure out for herself. Just get better, I said. Just please, please get better.
Emma is sick - again. NEC - again. Her stools were bloody, so they X-rayed and her intestines have air in them - again. Visions of sitting by her side as they re-intubated her filled my head. How can I go through that again - how can she? I wanted to dress her in the tiny clothes I brought from home, the ones I lovingly laundered and folded and placed in the box labelled with her first day of life picture. I did not want to watch as they placed a catheter in her and collected urine specimens, or pricked her heel for blood, or discussed the results of the X-rays. I wanted the healthy Emma, the one who has beaten all odds to still be here.
But this is not about what I want. It is about Emma, and her strength, and the expertise of the physicians and nurses at the hospital. So I spent as much time with her as I could, and had to leave to get back to the other children. And I have called about a dozen times since leaving. While there was some concern last night about viruses, so far there has not been a positive culture. So we wait for the antibiotics to do their job, and for Emma to continue to exhibit the strength and grace that has brought her so far on her journey. She is beautiful and spirited. She has big blue eyes, and a hearty little cry. She remains on the nasal cannula at the moment. I did not get to hold her, but I did get to whisper to her about what awaits her when she finally comes home - the siblings who will vie for her attention, the puppy who will lick her toes and make her giggle, and the crazy relatives who she will have to figure out for herself. Just get better, I said. Just please, please get better.
Wednesday, August 19, 2009
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