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.
Friday, August 28, 2009
Wednesday, August 19, 2009
Out of the Mouth of (My) Babe ...
Said my 6-yo, with his mouth full of fresh-baked banana bread: "You know what moms are for?"
Said me: "What?"
He: "Baking .... and loving."
Said me: "What?"
He: "Baking .... and loving."
Emma Update ...
Emma is doing remarkably well. So much so that, today they will take her of the CPAP and place her on nasal cannula Vapotherm. My research indicates this is a bit more support respiratory-wise than nasal cannula alone. It is hard to be receiving all this information via my thrice daily phone calls, and then piecing it together myself with research on the internet. However, I now have pneumonia, and still cannot go to see her.
Her feedings continue to be increased daily. She is currently receiving more than half her daily requirements of nutrition through formula. The nurses hope to have her begin bottle feedings next week.
I realize how stilted this post is. I am finding it hard to share the details of Emma at this point. It is such a difficult time, as I am always holding my breath, waiting for the phone to ring with news of a set-back. Each day, as she continues to improve, I rejoice with the news. But I find myself increasingly impatient for her to be home.
Her feedings continue to be increased daily. She is currently receiving more than half her daily requirements of nutrition through formula. The nurses hope to have her begin bottle feedings next week.
I realize how stilted this post is. I am finding it hard to share the details of Emma at this point. It is such a difficult time, as I am always holding my breath, waiting for the phone to ring with news of a set-back. Each day, as she continues to improve, I rejoice with the news. But I find myself increasingly impatient for her to be home.
Thursday, August 13, 2009
Baby Steps ...
Emma was extubated today. So she is off the ventilator and on CPAP. My research leads me to believe this is a temporary measure as they continue to monitor her and lead her towards nasal cannula. The doctors discontinued all antibiotics, and have weaned her off the sedative. She is making real progress. I received my first truly positive report in two months from one of the doctors yesterday. It took me quite by surprise, as just last week this same doctor told me they would not consent to a transfer for Emma because she was still so sick.
It is hard to get too excited - too much wiggle room for a relapse. Surgery still looms as a possibility, as her intestines continue to show an area of concern. I have not seen her for so long (two weeks) due to a cold that just will not loosen its grip on me. Too many antibiotics, plus the stress of the past three months have taken their toll on my health. I need to get myself together, I need to get stronger because when this child comes home she will need me.
It is hard to get too excited - too much wiggle room for a relapse. Surgery still looms as a possibility, as her intestines continue to show an area of concern. I have not seen her for so long (two weeks) due to a cold that just will not loosen its grip on me. Too many antibiotics, plus the stress of the past three months have taken their toll on my health. I need to get myself together, I need to get stronger because when this child comes home she will need me.
Wednesday, August 12, 2009
Friday, August 7, 2009
Saving My Sanity ...
Our lives have been in such upheaval for the past few months. The uncertainty surrounding Emma has made such commonplace activities as food shopping a huge undertaking - when is it "safe" to go, dare I chance missing a phone call from the hospital, dare I spend money on groceries that I may not be here to prepare for the children. The one thing that has kept all of us "sane", I believe, is our schooling.
We have completed week #9 of our Summer Term. I have changed some things that did not work, added some things that might make the whole year a bit more fun. Monday through Friday, we know that we will get up, get ready for a school day, and learn. There have been interruptions - an unexpected break taken for me to be near Emma. But in all reality, it is impossible for me to be near her each day while she is in Philadelphia - practical issues like travel expenses and time spent in traffic need to be taken into consideration. Plus, the children are not allowed to accompany me, so there is child care to consider. While my heart desires to be near the most critically ill member of my family all the time, it is just not possible. So off to school we go.
Today, we began our foray into the world of classical music. We have treaded into this water before - well, the twins and I have. But now we are using the guide from Beautiful Feet Books, and it looks like an interesting and fun study. There are so many wonderful resources out there - CDs, books, videos. But this guide will provide me with the structure I need to pull it all together. It will be easier to schedule all the extras when I have the skeleton of our study in front of me. This morning, we made our cover pages, illustrated The Ride of the Valkyries, and studied a bit about what made the Baroque Period The Baroque Period.
We used to have Fine Arts Friday, and I think I will try to implement that once again. It lends an ease to transitioning into the weekend, and ends the week on a light note - a reward for the hard academic toil of the previous four days!
Some people have remarked, "You're not actually doing school during this time, are you?" My answer is a simple, "Yes". School for us is as routine as brushing our teeth. It is us, it is our norm, it is part of our life together. Yesterday, the children put on a play for me. Their dialogue was punctuated with old English and Latin phrases, and their use of accents is simply charming. It was imaginative, and required the cooperation of a 6 year-old, who is not real big on conformity. It served as a reminder to me of how our non-traditional ways have so many rewards. When they are grown, I hope my children will be best friends with one another, and recall fondly the numerous plays, skits, and anecdotes of their academic years. Of course there are moments of tears - math is not a favorite subject of the twins, and Latin last week only required one paragraph of translation while this week it morphed into four paragraphs! Egads!! However, overall, I would not trade this time of family bonding for a schedule of buses to catch, lunches needing to be bagged and permission slips to be signed for anything.
We have completed week #9 of our Summer Term. I have changed some things that did not work, added some things that might make the whole year a bit more fun. Monday through Friday, we know that we will get up, get ready for a school day, and learn. There have been interruptions - an unexpected break taken for me to be near Emma. But in all reality, it is impossible for me to be near her each day while she is in Philadelphia - practical issues like travel expenses and time spent in traffic need to be taken into consideration. Plus, the children are not allowed to accompany me, so there is child care to consider. While my heart desires to be near the most critically ill member of my family all the time, it is just not possible. So off to school we go.
Today, we began our foray into the world of classical music. We have treaded into this water before - well, the twins and I have. But now we are using the guide from Beautiful Feet Books, and it looks like an interesting and fun study. There are so many wonderful resources out there - CDs, books, videos. But this guide will provide me with the structure I need to pull it all together. It will be easier to schedule all the extras when I have the skeleton of our study in front of me. This morning, we made our cover pages, illustrated The Ride of the Valkyries, and studied a bit about what made the Baroque Period The Baroque Period.
We used to have Fine Arts Friday, and I think I will try to implement that once again. It lends an ease to transitioning into the weekend, and ends the week on a light note - a reward for the hard academic toil of the previous four days!
Some people have remarked, "You're not actually doing school during this time, are you?" My answer is a simple, "Yes". School for us is as routine as brushing our teeth. It is us, it is our norm, it is part of our life together. Yesterday, the children put on a play for me. Their dialogue was punctuated with old English and Latin phrases, and their use of accents is simply charming. It was imaginative, and required the cooperation of a 6 year-old, who is not real big on conformity. It served as a reminder to me of how our non-traditional ways have so many rewards. When they are grown, I hope my children will be best friends with one another, and recall fondly the numerous plays, skits, and anecdotes of their academic years. Of course there are moments of tears - math is not a favorite subject of the twins, and Latin last week only required one paragraph of translation while this week it morphed into four paragraphs! Egads!! However, overall, I would not trade this time of family bonding for a schedule of buses to catch, lunches needing to be bagged and permission slips to be signed for anything.
Tuesday, August 4, 2009
My Little "Pooh" ...
Emma pooped! This is a very good thing. Four weeks ago today, her bowels stopped working. And today, she pooped. While they are analyzing the stool for any remnants of infection or blood, I will still celebrate the victory. Not exactly something you can put in her baby book (next to the first clipping of her hair), but still ....
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