The Grinch Stole My Christmas ... and is trying to ruin my New Year

A doctor who just doesn't understand that Emma is not critically ill, but has chronic conditions imposed an awful sentence on us on Christmas Eve - Christmas in the hospital. It was a devastating blow, considering the other hospital did its best to ensure my family would be together this holiday season. This was the first year I have spent away from my little ones. It was hard on all of us. Emma was fine, according to the hospital staff, but the pediatrician's office closed early for the day, and we were caught between checking out AMA, or behaving like good patients and enduring an interminable night and day in a room with a crib that looked remarkably like a cage, unable to leave said room because the RSV virus was lurking right next door. Very wise decision, if you ask me, to put an at-risk infant in a room just one door away from the very virus that threatens to put her back in the hospital.

My goal for the New Year is to find a doctor who truly "gets" micro-preemies. I appreciate the effort this doctor is putting in to trying to understand Emma and what she needs, but I would have appreciated it more if, upon our intake, he had admitted his lack of experience with these babies, and referred us elsewhere. That would have served all of us better.

7 months, Plus One Week ...

Emma has been home for a full week. We have yet to find our groove - she has not completely settled into a schedule, and she is still fragile in my eyes. I cannot comfortably allow her to eat as she pleases, or sleep as she wants. The ugly spectre of NEC is still looming over us, as a relapse is always a possibility. We cannot leave the house because it is too great a risk for her diseased lungs. She remains terribly jaundiced, though, in time, the damage the TPN did to her liver should resolve itself. I remain hyper vigilant about the number and consistency of stools she produces each day, as any change could indicate intestinal woes of a serious nature. Her sleep is light and, at times, troubled. I, myself, feel a bit woozy with fatigue. But, I believe I speak for my children as well as for myself when I say, we would not have it any other way. We were well aware of the conditions we would have to live under if Emma made it through her trials. The children knew about the freedoms we would have to sacrifice as we enter "lock-down" mode. And they are doing well. There have not been any complaints - perhaps a grumble or two as we are in close quarters with one another day after day. Emma makes it all worthwhile with her beautiful smile in response to our interactions with her. She is as feisty as ever, screaming with displeasure when her feeds are delayed the slightest bit. She is a wonder, I am in awe of her presence, and I am ... blessed.

At Home With Emma ...

The Academic Portion of the Day ...

Followed by Lunch ...

Can Really Tire a Babe ...

Shhhh ....

We don't want to wake ...

Emma!!!

She's home!!! Exactly seven months later, she is finally home. No machines, no medications - just Emma. Tonight she sleeps in her own cradle, in her own home, surrounded by her own family. We are truly blessed.

Living the Not-So-Deliberate Life ...

I have found it difficult to be deliberate lately. I feel I am in limbo, between two worlds - the one in which I am here, at home, waiting for the baby to join us, and the one in which we begin to live our lives together, with Emma finally home. That world looms in the not-too-distant future, possibly as early as the end of next week, if Emma continues to gain weight and not have any intestinal problems. It is so close, the end of this tumultuous period. It is so close, and yet, so, so far away ... So much can go wrong. If she vomits, if she begins to have too many bowel movements, if ... if .... if ... So much over which I have no control. I must plan for her home-coming and yet, I must remain cautious, on guard against defeat ... once again. I want to be optimistic. I really do. I can see myself being optimistic ... I just can't feel it. Four times yesterday I told my children to get ready to go shopping - four times I told them we were leaving to get things for the baby. Four times I told them, "Maybe we'll go another day". Finally, with the fifth announcement, I managed to convince myself that I really did have to get certain things ready for her probable, possible, eventual home-coming. We did go - I do have all the receipts. How is that for optimism?

Mile-marker 200, Straight Ahead ...

I was at the hospital for rounds. The resident read from Emma's chart: "Day of life, 196 ...". They asked me if I had any questions. Only one came to mind: Does she get a gold watch when she reaches 200?

The Queen's Arrival ...

I journeyed to Philly today. Upon my arrival at the hospital, I was greeted by a sign that read, "Parking lot is full. Sorry for the inconvenience." Hmm. What to do? I had just driven 85 miles to be turned about by a sign, 'Sorry for the inconvenience"? Uh, no. I felt extremely belligerent at that moment. I wanted to ... I don't know what I wanted to do, but definitely I wanted to blame someone, have someone fix it, have someone ... Who is this "someone" I wanted to hold responsible? The someone who was going to make the hospital less hectic today, on the day of my arrival. For does not that someone know that I, Emma's mom, visit on Wednesday? Was not someone notified? And, by the way, could that same someone arrange to have my daughter better so she can be home for the holidays? Because this is truly a huge inconvenience and I want it stopped ... like now ... okay ... someone? Anyone? Bueller? Bueller?

Challenges and Blessings ...

I stumbled upon a new blog this weekend - it is on my sidebar. If you ever need a kick in the pants after a self-pity party, just click over on NieNie. She'll put it all in perspective. I was up until the wee hours of the morning reading her blog. I needed to see when it all changed for her, the moment she started to categorize her life into "before" and "after". There is a single picture that, once you know the story, captures both the essence of the loss and the joy of her journey to a new being - Easter Morning, 2008. I stared at that picture for quite some time, both before and after I had learned of her struggle, her suffering, her need to reinvent herself and yet cling to what made her herself before the accident. There is a prophetic air to her writing in the months before the accident, an alluding to fear, a sense of almost knowing this all must come tumbling down, it is too perfect, too blissful. Before Emma was born, I would marvel at the people I had either met or read about who seemed to be blessed by the struggles in their lives. Children who challenged them with their disabilities, disease that had ravaged their bodies and left them without much hope of a future, catastrophic events caused by the carelessness of others that devastated their families or their homes or their livelihoods - all horrible circumstances that one would think would cause a sense of despair to set in, a sense of pointlessness, a sense of, "I just cannot go on". And I would wonder at the absence of that, and at the joy that seemed to define their lives. I would fear the same things happening to me, to my family, most especially, to my children - because I doubted my own courage, my own abilities to cope, my own strength and faith. I am not out of the darkness yet, so I can not judge how I have weathered this storm in my life. But I have come to realize that there is a sense of being chosen that comes with struggles of these proportions. As though, God looks down at each of us and judges us to be strong enough to handle the gifts of the special circumstances we have been presented. And we call upon ourselves to meet the challenge, be worthy of the gift. Because that is what has come out of my challenge - a sense of wanting to be worthy of Emma, of all she has been through, of all that has been done to hopefully bring her home to us. There is also as an appreciation of all the normalcy that marked our lives before, and a desire to renew that in the aftermath of the turmoil that has marked it since. When you read NieNie's story, you will marvel at her faith, her strength, her willingness to go on. She speaks of the blessings in her life, and of her simple thankfulness at being alive. Hers is perhaps the most inspirational story I have read in a very long time - well, except, of course, for my little angel. But I am a bit biased.

Weekly Report ...

Week #20 completed! It was a good week. Once again, my six-week schedule helped me remain on track and focused.

The oldest twin completed Central Asia in her Eastern Hemispheres studies. We are working our way through Penny Candy, and she just completed the missionary biography she was reading. In Latin, she is continuing the review of LCI that LCII focuses on in the first five lessons. We also listened to the recordings from Librivox of Famous Men of Rome, completing chapters 3-5. I had her focus her attention on Life of Fred:Decimals & Percents, completing up to the Bridge that includes chapter 25. We will finish the book in two weeks, and then return to Math-U-See, Lesson 19. I have the Fred Algebra book on hand already, but I do not think we will begin it just yet.

Grammar studies included the younger twin, and we were able to complete five lessons this week, as well as two worksheets, and a writing assignment that focused on outlining paragraphs. The younger twin also worked his way through to the second quiz in his third CLE math workbook, and completed two weeks in science. He is reading Just So Stories, by Rudyard Kipling. He completed a number of drawing lessons via the on-line academy, and studied the Jewish holidays and Biblical origins of Rosh Hashanah and Yom Kippur. In History, we read about Greek sculpture and architecture. He added some narrations to his notebook, and drew examples of the Greek columns. He also decided to research the prevalence of the various columns in historical buildings. Got to love it when they take that extra step.

Little Bear is nearing the completion of her fourth workbook in math, and she has reached lesson 30 in R & S Spelling. We studied the Nile River this week, as well as King Tut and the mummification process. She remembers a great deal from when the older kids were working their way through SOTW I, which was 4 years ago. She was only 4 then. In Science, we studied pigeons, and read about the Cuckoo, who replaces the eggs of certain birds with its own, so that they can be raised by the efforts of others. Little Bear was really disturbed by this, especially since it involved ridding the nest of the eggs that belonged there. She felt the Cuckoo should do its own work. Little Bear is continuing to do well with Writing with Ease. Her narrations have improved so much. I have added a little tweak to the program a la the old Sonlight LA. I have her underline, circle, squiggly underline various parts of speech. She is able to recognize nouns, proper nouns, verbs, and adjectives now with relative ease.

I did manage to get some work in with Rocko. I always wait until he is receptive because I just do not see the point in trying to teach him when he is otherwise engaged. His math skills are excellent, and he can add two two-digit numbers in his head. And his writing is improving. I am using a dry-erase board with him, and helped him with his grip this week. It really seemed to improve the quality of his writing. We read about the Creation week, and a picture book of Noah's Ark. He was so interested in that one, and was able to relate to me the story in his Bible storybook about how Noah came to be on the ark. He then took it upon himself to draw his own rendition of the ark, and the animals, and Noah and his sons. I can see his interest in academics growing slowly. He asks me more often to "do school". It is nice to see his interests come alive.

Well, those are the highlights. Emma is improving, slowly. She is over 7 1/2 lbs. We are awaiting lab analysis of her stools, as there was some concern over the consistency. Let's just pray it is not the start of anything bad again. I will end (actually they are up at the top) with pictures of some playtime at a nearby park, which is situated beside a lake. It is beautiful. Hope you had a good week, too.

About Face ...

Notice anything? Anything different? In the words of Tommy Pickles, Emma's "nakee" - well, her face is, anyway. No more feeding tube. No more tape, no more blotches caused by tape, no more horrible patches of bruising and bleeding caused by her yanking the tube and the tape. She is taking all of her feeds by bottle.

Bittersweet Moments ...

I know the NICU nurses want to make me feel good about Emma's development and experiences, but ... to hear that her first "walk" was with the nurse, and her first smile shared with another baby was with the nurse, and the first time she laughed with someone playing "Patty Cake" with her was with ... the nurse, is a hard pill to swallow. I am pleased that some nurses take more of an interest in spending time with Emma beyond what her physical needs dictate. It warms my heart to know there are nurses who nurture her soul as well as her body. But it is as though I am awaiting word on an adoption that is taking far too long due to red-tape, while the baby is languishing in a ward, growing without the family that longs to provide her comfort, sustenance, and love on a daily, hourly, second-by-second basis. The empty cradle in the next room, the quilt with the warm chenille fabric, and the doll lovingly placed on the pillow inside the bed, all await Emma. The siblings who have not set eyes upon her in six months - since she weighed less than two pounds - already speak fondly of their baby sister, and await Emma. And I await Emma - not just word of Emma, not just the morning, afternoon, or nightly report on Emma, but the actual being of Emma.

The (Long) Road Home ...

I received a call from Emma's doctor yesterday. She is the new attending, this habit of changing doctors every three weeks only serving to add to my sense of uncertainty. I had asked for clarification that we are indeed going to follow the "plan", that which was agreed upon in the conference room many weeks ago. Because, as has happened before, it is not unheard of for the new attending to decide, "Now we are going to do things my way," which could result in drastic consequences for Emma. As usual, my heart started to race when the number for St. Chris appeared on my phone. The doctor let me know right away that Emma was fine, but my heart beat took awhile to receive the message. She reassured me that the treatment plan was unchanged, and that formula fortifier was not to be used at this point. But she stressed that Emma is only one-third of the way to full feeds. One-third? I thought - nay, I hoped, I prayed, I inwardly pleaded and willed it to be - she had done her math wrong, that somehow she miscalculated. The nurse told me, on Sunday, Emma was one-half of the way there - 1/2, as in 21 more days from Sunday, as in 19 more days from today. The difference between 1/2 and 1/3 is huge. One-third means 44 more days of this, more than twice what 1/2 means. The road which led us to right before Christmas, suddenly stretches to the new year. It means trips to Philly through snow and ice, freezing temps and inclement conditions. Just as I was hoping to share our fall trips to the park with my little one, I was so hoping to avoid winter driving to the hospital. Emma is the little golden ring just beyond my reach - each time I believe she is within my grasp, she is pulled just that much further away, dangling, waiting for me to try again. I won't stop trying, of course - but it certainly weighs heavy on my soul.

What's Up ...

This is Emma taking a bottle.

This is Emma saying, "Is that all you've got?" (She has obviously not sat in on our grammar classes.)

We are at 21 ml every three hours and 7 lbs. 4 1/2 oz. I've started removing some of her preemie outfits and replacing them with Newborn sizes. Very exciting developments - makes you want to cheer and be sick from nausea all at the same time! We can only pray that she can maintain this progress without any setbacks. Perhaps her homecoming will serve as this family's Christmas gift.

Weekly Review...

We had a pretty good week. My oldest daughter still has a poor attitude toward math, and sometimes, that translates into a poor attitude in general, which morphs into me getting upset with her poor attitude in math ... Vicious cycle. Math needs to be done. That's it! You can not be a math drop-out in the 6th grade, no matter much you excel in your other subjects. She may love literature, and do very well with writing, but math is a necessary evil. So we sat together every. single. day. And we did allllll the bridge exercises in Life of Fred: Decimals & Percents to bring us up to Ch. 21. She was not happy - with me. This child wants to take herself to her room after breakfast and be left alone - as in, I-am-my-own-island alone.

She also began Central Asia in her Eastern Hemisphere Explorer studies. The map for this assignment was ... oh. my. I helped her with this one, only because, well, did I say ... oh. my.? One more "... istan" and my hand was going to fall off. We also completed one lesson in Latina Christiana II and Ludere II which was another exercise in mental anguish. I like the challenge of Ludere puzzles, but the derivative crosswords are so nonspecific - they are almost impossible to complete without the aid of the teacher's manual. I am glad we switched back from Ecce Romani, however, as the structured assignments were just what my little Einstein needed to get her motivated with Latin again. She read, probably three or four books while locked up in her lair, and we are working on Whatever Happened to Penny Candy? together. It is quite insightful to read this book in the presence of an 8 and 6 year old - they have much to add in regards to government, work ethic, and the evils of taxes.

The younger twin continues to work his way through CLE math. He finished another four assignments and a quiz. We also studied the origin of the Olympic games, watched a video on the geography of Greece, and read about Persephone in our mythology book. He is also close to completing The World of Captain John Smith, quite an endeavor, especially at the sloooooow pace recommended by Ambleside Online. I have him studying the origin of Jewish holy days, as well as reading a number of books to the younger children, when he can corral Rocky long enough to get him to listen to the story. He is also making wonderful progress in his SL Science studies, and really enjoying the readings. It is especially wonderful that he is totally independent in this course. Once he had the hang of using the schedule and the activity sheets, it was not necessary for me to sit with him. He is required to be near me, and I am available to answer questions or clarify something he may not understand. But he is pretty much on his own, and loving science this year. SL did a really good job revamping their science this year. It is so user friendly and really written to the student. When you have four levels of science going, it is good to know that your 10 and up kids can be independent.

Little Bear is very near completing her 2nd grade studies. I am looking into ordering for her new year, which we will begin after the Christmas holidays. We were very eclectic this year, especially with history and geography, sometimes doing her own studies and other times folding her in with one of the older children. She has learned a good amount of general world geography. She has also done well with her level of SL Science. Give her a worksheet and she fills it in with gusto! Math is her love. Her work is so neat and organized. It is wonderful that she has acquired this skill so early in life. No need to scold her for misplaced books, or sloppy figures. Each day, she sits at the table and copies a paragraph from her McGuffey Reader - not because I assigned it, but because she wants to do it, and enjoys it.

Little Bear, Rocky, and the Younger Twin completed many Draw Squad assignments this week. Their drawings are so unbelievable - the enrollment in the on-line academy was some of the best money I ever spent. They have learned so much. My older daughter much prefers her lessons in God & the History of Art. As a group, we began the Classical Era in The History of Classical Music. And the twins completed two more lessons in grammar, as well as one worksheet. I have also begun implementing many of the ideas from Writing with Ease across the curriculum, resulting in much improved written work.

It was a beautiful week for being out of doors. So we included lots of time outside in our days. And those are the highlights. Hope your week was good, too.

There But By the Grace ...

http://www.gavinowens.com/

Ugh ...

Emma took her entire feed by mouth tonight - 19ml. It is quite an accomplishment considering she only started feeding by bottle earlier this week. I miss her. From what I have read concerning the traffic in Philly, I would probably be looking at 1-2 extra hours on the road. Plus, if there are any detours, I would just be completely lost. I have no idea how to go but one way. Ugh!!!

I know unions have their place, but I am hard pressed to feel sympathy for people who call a strike when the economy is so fragile and so many people have lost their jobs. It seems about as well thought out as the electric company's plan to raise rates 35% in January. Where is the common sense, an eye to what is moral and righteous? What sense is there is demanding more money when money is so tight for everyone? The electric company has a whole host of programs available to help those who will no longer be able to afford their electricity when the rates go up. How is that better than keeping the rates at a level we can all afford - on our own, without any government assistance? Or are we all buying into this nonsense that a government program somehow has nothing to do with the working people of this nation? The money originates with us, the taxpayers. It all means more taxes. And less money in our pockets to pay for our needs. Without government assistance. Until we can't afford to pay the taxes, and have to sell our houses to avoid the taxes, and then hope we qualify for a government program to help us secure housing. Paid for by taxes.

Books ...

I was sitting with my daughter, working my way through yet another painful math session, when I glanced to my left and saw the vignette pictured above. It struck me as majestic, simple yet bold in its statement - Books! I love books. There is nothing I desire to spend money on more than books. Professional haircuts, manicures, and nice clothes are not a priority when lounging pajamas and hair pulled back in a headband are way more comfortable for the travels that await me in a book. I wait with eager anticipation when it is time for new books to arrive. You would never catch me with a Kindle or any other device meant to replace the tactile pleasures of an actual book - its weight in my hands, whether a tome or a simple picture book meant to please my young uns, the smell of an old book versus a new one, the spine of a well-worn volume that is hanging on by a thread as opposed to the tight binding of yet unexplored territory . Books line my shelves, lay waiting for me in the car, are stacked three to six high on my nightstand, and are safely ensconced in my purse, less a spare moment present itself to me unarmed. I hate finding time to fill, yet having no reading material with which to fill it.

I keep a stash of books at the hospital now. I have a book of fairy tales and one of poems and prayers to read to Emma. As she snuggles in my arms, I share the wonders of reading with her, just as I would be doing if she were home with us - just as we should have been doing. I imagine how different our days would be with an infant in the house, how we would be pressed to include her schedule in our daily routine, take her needs into consideration when planning our days. But one cannot get too caught up in the "if only" s in life. I have at times, only to find myself becoming stagnant, unable to move forward because, after all, life is just not how it was supposed to be. I oftentimes think that situations like ourselves are exactly what health care reform policies seek to avoid in the future - do not allow people to be faced with these dilemmas that cause loss of work time, loss of efficiency in all things, emotional stress ... money. If life hands you lemons, throw them away before they sour the life you really wanted. The truth is, yes, I would not have ever imagined this to be our life, and I do wish it away on certain days. But it is not the child I wish away - just the situation. While it is difficult and stressful and expensive, it is our life. There is something to be said for not always getting what you want in life. It may be cliche, but it is true that these are the times that make you stronger and allow you to reflect on your blessings and see your growth in character and fortitude. I have seen my children as youngsters who are not as selfish as I feared and capable of love that far surpasses that which I ever expected.

How did I get started on this? Oh, yeah, books. Well, suffice it to say, I love books.

Hold On Just a Little Longer ...

I know I should not take the Septa strike personally, but ... 900,000 people competing on the roads of Philly to get to where they must be, and me, trying to snake my way to the hospital right smack down the main drag? I think I am outnumbered! Oh, Emma. Mommy's not coming to see you after all. Excuse me while I go weep.

We Took It Outside...

The Young Pup

The Awful, Never-Ending, Layer-Upon-Layer of Leaves

The Serious Scholar

The Artists In Deep Concentration

Today was a rough day. Perhaps it was the time-change ... Perhaps it was yet another whirlwind weekend ... Whatever the reason, by 11 am I had had enough. Attitudes were poor (mine included), and the thought of the long hours that stretched before us until bedtime just was too overwhelming to bear. So, we packed up our sketch books and the video camera and headed outside. We spread an old comforter across the lawn and the kids settled in to complete their assignment - pick a vista, snap a picture of it, and then sketch it. I mowed the leaves (that's right, I mowed them) as they rather contently sketched the house, the rock beds, and the mailbox. They did a very good job. My serious student was very precise with her architecturally detailed drawing of the house. My Mark Kistler fan added cartoon characters to his rock bed, and gave the house a fun-house feel. My Little Bear did such a good job with her drawing - I am always surprised by the effort she puts into her work, because I think of her as so young still. It was wonderful for Rocky to be out of doors, so he could race about like the young pup that he is. We even had some time for PE - football practice. After a few hours, we took a break to get some food and then the kids spent a few more hours outside. We completed our academic work in the evening. Non-traditional but time well-spent. It was a glorious fall day, cool but not cold, brisk, not too many bugs to spoil the air. The children really enjoyed it, it helped break the hold the bad mood of the am had on us, and I got some yard work done.

I think the bad moods and poor attitudes are partially my fault. I have committed an egregious parenting error - I have felt sorry for my children. I feel sorry for them for having to go through the emotional turmoil of this situation with Emma, and I feel sorry for them that I have to leave them so often and disrupt our normal way of life. But pity never did a body good. So I need to just stop. I need to reinstitute my high expectations for my children. Chores need to be done again with efficiency and regularity. School requires effort, concentration, and time. And life does not have to be fun. It is nice when it is. Today it was. Tomorrow? We'll see.

Take it Outside ...

Saturday was a hospital day. I sat with Emma for three hours. With the Phillies and the Eagles scheduled for today, I would have spent more time sitting in traffic than sitting with the baby. Emma was very fussy. There was a new admittance who was put right next to her, and his parents came in for their first time. The man was soooo loud. I feel terribly sorry for anyone who enters the hallowed realm of the NICU, but this particular person irritated me. Not only was he loud, but the very first question he asked of the neonatologist was if, in her opinion, the fault for his baby's plight lay with the obstetrician. I truly wish someone had the sense to give these parents some privacy to converse with the doctor. I did not want to be privy to what I was sure was a lawsuit in the making conversation. The whole day was ruined for me. I felt - and still feel - unsettled. I can not help but worry that, one day, in the not so distant future, the brilliant minds most wanted - and needed - in the medical profession will no longer consider that a viable career option, simply because, who wants to put all that time, effort, and money into a career that can be ended based on a judgment call that is questioned by some lay person? My family has been the recipient of some amazing life-saving medical care in the past twenty years. We have also suffered loss at the hands of doctors who may have done better to listen closer, perhaps ask for guidance from other doctors. Loss hurts. Dollar amounts cannot undo loss. I cannot imagine putting a dollar amount on a life. Perhaps if one is seeking to pay for care for a child who has been carelessly injured, I could see the benefit. But, if I lost my child, you could lay a million dollars on my bed, and I would still feel the sting of the pea beneath my mattress - for the loss would be that pea, forever the pain of something missing, of something not right, of the child that was and is no more. Maybe lawsuits help assuage some. Maybe it is a tonic to help soothe the hurt, calm the giant "what ifs" of fear that loom over us when our children present to us so fragile and so broken in the NICU. It is most certainly something that requires the expertise of those who possess enough knowledge to say that a mistake was made. And it is something that most certainly should be done discreetly, in hushed whispers in a conference room or out of ear shot of those of us for whom it is none of our business. I do not want to be privy to your dark-side while I've got my own to live through. And, at the moment, I am trying to enjoy the light of the tiny embers of brightness that I pray continue to be stoked in my little Emma.

Just as a caveat, lest you think, "My, aren't we holier than thou!" - I do believe in the right to use the legal system if necessary to address possible malpractice. There is not a day that goes by that I do not entertain the possibility of that need in my own situation. But it will be done with serious consideration, only following the realization that it is an avenue that must be explored to address the needs of Emma in the future. It will not be a way of displacing the pain and the burden. And it will never compensate for any of what we have gone through - most especially, Emma. It will never take away my own sense of guilt that perhaps I did not take good enough care of myself. I will always curse that blasted flu that plagued my entire family in February of last year, blurring symptoms of pregnancy with symptoms of illness. Each time I enter the NICU, I repeat what has become my mantra: "There but by the grace of God go I", simply because, as bad as it has been and as it may yet become, there is so much worse out there - the baby born with a hole in its face, whose cry sounds like the most awful wind-up toy you could imagine; the baby with the hole in the top of its head, whose cap fell off when the mom picked it up, spewing fluid all over her; the baby in bed 5, whose O2 levels keep falling into the 30s, requiring the nurses to repeatedly bag him. I could go on, but, quite simply, There but by the grace ...

Break Time ...

We are off this week. Technically, although we are not counting the week towards our school year, we are finishing up a few odds and ends. So, to me, we are off - to the kids, not so much. They really can't complain. A few math bits to solidify, a few pages to read, one grammar test to finish up a unit, and some Hamlet.

That which does not kill you, only makes you stronger, my children.

I have also been working on our schedules for the next six weeks. We will be returning to Latina Christiana, reviewing the first book and beginning the second. The Oldest Twin wants the structure of the video, workbook, and activity book. I have spent today reviewing the first book myself, making some notes, and wondering why we left. Oh, yeah, the little bothersome bit about me dozing off during the videos played a part in that decision. Really, it is a good, structured program. But, as I was reviewing it today, I wanted to be clear about my goals as to why we are pursuing this particular subject. While the grammar is interesting and reinforces what we are learning in our formal studies, and translation is fun, I want to emphasize roots and derivatives, and I feel that is a shortcoming of the program. But I have found this to be lacking in Lively Latin and Song School or ... oh, whatever other one I tried out. So I need to be more vigilant with this aspect of our studies, and make sure I add the emphasis which the program itself lacks. We may start up our Greek studies again, if I can find the time. Adding another area of study that just serves to compromise our core studies is not going to serve any purpose. Slowing things down, going into more depth is really reaping the rewards around here. Both of the twins scored in the high 90s on their grammar unit test, and their narratives in their respective history studies have blossomed.

If I had to pick one subject that has had the biggest impact on our studies it would have to be grammar. The twins have been with Rod & Staff for three years now, beginning with Book 3. They have really utilized the skills they are learning - in particular, this year, outlining - across the curriculum. I only schedule grammar three times a week, with two or three actual lessons and the supplementary worksheets. Most of the lessons are done orally. And, while I often look longingly at other grammar programs - ones with fancier books, a bit of spice to them - I realize, if it ain't broke, don't mess with it. I tried to jump into the R & S 9 book with my oldest in my earlier days of home-schooling, and it was impossible. So my goal is to bring these two along the path from the beginning. By Book 6, my understanding is that they will have more grammar than most high school graduates.

Well, back to the schedules and my Latin studies. I will leave you with a snippet of an Emma video. I was supposed to see her yesterday, but I felt unwell. Can't be too careful around her. (At least, that is what I say to console myself and ease my guilt. It doesn't work too well.) She is currently at 10 ml on her feeds, and weighs a whopping 6 lbs 5 1/2 oz. Go, Emma ... Go, Emma ... Now, to appreciate this video and its content, you must imagine having a child with whom you have had limited contact from the time of their birth - almost as though they have been in a coma, unable to respond to you. And slowly, over the course of many, many, many months, they begin to awaken and attain the many milestones your other children came to with ease. You just cannot imagine the way a simple interaction such as Emma displays here has made my heart soar with hope. I watch, rewatch, and then ... play it again. It is simply a miracle. She is simply a miracle. And if you want to put a price tag on that miracle, go right ahead. My question to you is, what are we developing all the new technologies for, if not for the attainment of these types of miracles? Allow smokers to sue tobacco manufacturers and continue to smoke, and then provide them with surgeries and drugs to combat the damage they have inflicted upon themselves. Let alcoholics drink themselves to the brink of death, and then give them a life-saving transplant. Allow motorcyclists the "right" to choose whether or not to wear a helmet, get mangled in an accident, and, after emergency personnel have finished cleaning their brains off the pavement, allow them to rehabilitate in expensive facilities so that they may one day feel the wind in their hair again. But, if you allow all that in the pursuit of the individual's right to choose for themselves, then do not tell me that the child born too soon - without any fault in that event - has no right to at least be given a chance at life.

Houston, We Have Contact ...

Eye contact, that is!!! And smiles. Big smiles, deliberate smiles, amazing toothless grins upon being spoken to. Today was a wonderful visit.

Bigger is Better ...

I received some good news tonight - Emma has reached six pounds! She is 6 lbs, 2 1/2 ounces, to be more precise. In less than one week, she has put on over 140 grams. The doctor reported to me that she was getting fat. That may not be true, but the weight is truly good news. If she will indeed need surgery, the bigger she is, the better she will fare.

Long Over-Due Weekly Review ...

I have not done a weekly report in a bit. So, to wrap up another 6-week session, here goes:

The Oldest Twin has completed 6 painful Latin translations in Ecce Romani. Suffice it to say she is not enjoying this text anymore. It did get quite ... tedious rather quickly. We are not giving up on it, but we will add Latina Christiana II back in, along with the Ludere activities, and our on-line reviews. I have had a difficult time procuring the teacher's manual for Ecce Romani, so trying to explain the grammar concepts without the guide was a bit of a challenge. I will be thankful for the break from my Latin homework for a bit.

Oldest Twin has also completed Math-U-See Zeta through Lesson 18, as well as Life of Fred: Decimals & Percents. She received a 100% on the Unit Test following Lesson 16 in MUS, so I feel good about our progress towards Algebra. I am trying to decide what program we will use next. I have already purchased Fred's Algebra book, having found it at a clearance price. I prefer this series as a supplement, though.

O.T. has completed her study of China, Mongolia, and Russia in her Eastern Hemisphere Studies from Sonlight. We supplemented with a lot of videos, and learned a good deal about the modern cultures of these countries. One of our favorite books, surprisingly, was Genghis Khan and the Mongol Horde. To take a murderous tyrant and make him into an interesting character study ... well, that takes some talent. Kudos to the author! I did add quite a few books to our literature selections, including Peter the Great, Story of the World, Child's History of the World, Window on the World, and the Edith Nesbit books, The Railway Children and The Book of Dragons. The last two have nothing to do with our geography/culture studies, but were nice reads. The others brought some more geographical information and/or historical perspective. I think you could make this course into a two-year study if you wanted to focus more on the historical aspects of each country. I am not trying to stretch it out as much as give it more historical dimension. Plus, my child is almost through with all the books, readers and read-alouds.

As for the Youngest Twin, we have finally, finally, finally found a math program that fits!!! After attempting Saxon, Math-U-See, MCP, MEP (available free on-line), Rod & Staff, and Singapore, we gave Christian Light Education's new Sunrise Edition a shot, and we have success. He loves the workbook format, the explanations are written directly to the student, and the amount of work is not overwhelming. The first unit was a review of the previous year, and brought him up to speed with their grade-level work. That is the difficult part of changing math programs - each publisher seems to approach grade-level work a bit differently. But he has found his niche and is enjoying math now. It was not a matter of not being able to do the work. It was just a matter of finding an approach - workbook format, not too cluttered in print, explanations clear, no switching back and forth between text and workbook and extra practice books - that felt comfortable to him.

Y.T.'s studies of Greece are going well. We are in Sparta now. He is doing well with the narrations I have added a la The Well-Trained Mind method. We have also been studying outlining in our grammar course, and I am requiring he work on honing that skill in his history studies. He is loving his biology studies, and especially enjoys telling me esoteric facts concerning sea life. The Sonlight Biology books include incredibly detailed, vivid pictures of sea creatures and amphibians, and reptiles, and ... icky things. Sometimes even my child has difficulty looking at the creature of the day. But it is interesting.

Youngest Twin has also continued his studies of Greek Myths. His knowledge of the Greek gods is excellent, and enables him to read books like Black Ships Before Troy with a bit more understanding of the basic plot and some of the action, especially when the gods and goddesses involve themselves in the war between Greece and Troy. As I read the book, I was glad I had been studying with him. I could not imagine understanding Black Ships ... without a good working knowledge of Greek mythology. This realization has me concerned about Oldest Twin's return to her study of the Ancients next academic year. While YT has a love of the classics, OT does not share that love. She much prefers the Sonlight literature selections. So, while I hold Omnibus I from Veritas Press lovingly in my hands, stroking the beautiful cover and longing to delve into its pages along with my oldest girl - who definitely has the brains for the challenge - she will not enjoy the journey. She is a Sonlight girl, through and through.

Back to our review: We studied Handel as our composer for a few weeks. Handel's Hallelulah Chorus is easily recognizable now. The children enjoyed listening to Hallelulah Handel from Classical Kids. We also worked on our classical music timeline. Group Art Appreciation has not happened for about two weeks, although the Oldest Twin continues her work in God and the History of Art, focusing on Rembrandt.

Little Bear continues to make headway in her work. She has almost completed her Rod & Staff math books for the year, as well as her spelling book. Her handwriting is beautiful in both cursive as well as print. She adores copywork, using the McGuffey Reader just for fun. Our science studies are going well, and she has learned quite a bit of world geography. She is able to label all the oceans, continents, and hemispheres, as well as major countries such as the USA, Russia, China, Japan, Australia and Canada, and knows about the equator and various weather patterns. After the new year, we will begin her third grade studies. I am not sure yet how we will proceed, but I am leaning toward a more WTM approach than Sonlight, simply because I do not see the maturity in my little guy necessary to bring him along in Little Bear's studies, and I do not have the time to utilize another entire SL core with this one student, in addition to all else. I still have time to decide.

Well, those are the highlights. Life goes on, we plod on, making the best of things. Hopefully, there is a field trip in our near future. Other than that ... onward we go.

How I spent My Birthday ...

After a drive to Philly to spend a few hours with my youngest, I came home to find my children had baked me a cake, from scratch. They used the internet to find a recipe, mixed it up themselves, baked it, and cleaned up.

Thanks, guys!

We Are Not in the Money ...

I am supposed to go to Philly tomorrow. So I posted the kids' "Math Problems a la Mom" tonight. Oldest Twin's problem: Tom's salary is $200,000 annually. He spends 24% on food, 16% on electricity and other utilities, 21% on car and related expenses, and 19% on housing. How much $ does he spend on each area of expenses, and how much money does he have left to pay his 20% in taxes? Well, the oldest twin saw the problem already written out and had two questions: One, is Tom the brother of Jim from the previous problem, and just what do those two do for a living???

The Wall of Education...

Today is a busy, emotionally charged day. The baby is to resume feeds, albeit verrrrrry slowwwwwly, and my father is to undergo surgery. So, since I cannot be with either one of them, I will focus my attention on the children. I will torture ... eh, uhm, I mean, educate them. I changed things up a bit here last week, and made a major wall in our home into the school wall. I put up two dry erase boards, our world and US maps, and some posters. I have once again caved to the reality of our life - we homeschool. No one room can contain what is the main focus of our lives. So let us embrace the books, the papers, the various writing implements, the building blocks and math manipulatives, the Lego men ... basically, the mess. And each morning we now begin with math problems on the board. Now, while this may sound "schoolish", it has real value in that it has enabled me to use what the kids are "supposed" to be learning in the texts and apply the concepts in different ways to see that they are mastering the material. Case in point: the oldest twin is using Math-U-See Zeta and Life of Fred: Decimals and Percents. As has happened each year we have been with Math-U-See, I sometimes do not understand Mr. Demme's explanations/methods. And if I have not followed from the beginning close enough, I cannot possibly explain it to my student in his way. So to the board we go for a re-explanation a la Mom. Once she has seen the light, I focus on those types of problems for a bit. Otherwise, the oldest twin will get really down on herself, feel like a failure, and convince herself that math is her nemesis, not her friend. Today's problem was the following:

Jim spent 15% of his $100,000 salary on a new car. He paid 18% sales tax. He also bought new tires for $1200, each. How much did he spend in all? How much money did he have left from his salary?

This one problem required her to use addition, subtraction, and multiplication, and remember how to figure percents. She did it with ease. Just a few minutes each morning focusing on "Mom's Math Problem of the Day" has helped quell her math phobia, and it has really given her confidence that she can indeed do math.

(We also make use of the pictures on the walls in Art and Art Appreciation. We study the artist, the actual picture depicted, and the children attempt to re-create the scene in their art notebooks. They have become quite adept at this. My 8 year-old has used the skills she has learned to draw various items around the house, including the china cabinet and the armoire. It is really amazing to see the lessons in art and drawing take root and blossom.)

Hope Restored ...

Friday was a big meeting with the doctors and therapists caring for Emma. I prepared as if going to trial, ready to defend my daughter's worth, prove her capacity for healing, plead for another chance ... However, it was unnecessary. The dire prognosis bestowed upon her just a few days' prior was apparently unfounded. An apology was issued by the surgeon who shares a much more optimistic outlook of Emma's future. The prognosis was given by a doctor who really was unfamiliar with Emma - and only knew "NEC 4x" to be indicative of failure to feed. It was then shared by two other doctors who jumped on the bandwagon, so to speak, and in doing so crushed the spirit, hope, and faith of this mother. Thankfully, I recovered on all accounts. The team we met with was optimistic that, despite this set-back, Emma will eventually recover and be on her way to full-feeds once again. The surgeon believes there is probably an isolated area of tissue that is diseased and will need to be removed. However, finding that area is not a simple task. He wants to explore her intestines, via a laparoscopic procedure. This is the lesser of two evils presented to us, as the other option involves removing her intestines, laying them out, and investigating. Either way, the reality is, the damage could be within the intestinal wall, and therefore hidden from view. So, as of this moment, surgery, while a very real and probably completely necessary option, is not definite. What is definite is that Emma is alert, her belly is (radiographically) improved, and she has once again weathered a bout of NEC without requiring any respiratory support. I have many more gray hairs, but ... when she lays against me, in the little niche between my chin and my shoulder, and I marvel at how the fit is like a puzzle coming together, it is all worth it - the driving, the worrying, the pain of the unknown. She will join us, she will take her place among our family, she will be here everyday, and I will no longer need to ask a nurse, "How was Emma's day?". Because her day will be with me, and with the other children ... and I will know how it was ... because it will be here, in our home.

Out of the Mouth of Another One of My Babes ...

My children help keep me sane. My sweet little eight year old's note to me today: "Mommy, I love you with all my hate!" (We will continue to focus on spelling.)

I Missed It...

I took a ride up the mountain road today and was suddenly struck by the fact that it is fall. The later part of fall, past the point of the glorious autumnal bursts of colors, colors so beautiful when pitted against the cool blue of the sky it can make you ache inside, an ache of desire to preserve the scene forever. But I missed it this year, just failing to ever look up as I repeatedly traversed that mountain road, fetching the kids following yet another sojourn to Philly. I missed it, as I feverishly ran an errand, impatient to return home, a bit fearful at the possibility of missing a phone call from the hospital. I missed it because life has preoccupied me with ... other concerns. The point is, somehow I missed yet another season, as this particular season of my life has consumed my time, my attention. I remember last fall. How I yelled to the kids to put down their various electronic devices and look, just look!!! , how beautiful nature can be. I remember taking pictures, taking walks, enjoying the briskness of the air, the cool breezes, the beauty of the mountains adorned with so many vibrant colors. I remember feeling so blessed, to be able to share autumn with my children, to have children who can appreciate autumn ... and a walk ... and their mother. Fall is my favorite season. And this year, I missed it.

What if It's the Treatment That is Causing the Sickness ...

I have, on more than one occasion, questioned why I bother with this blog. What started out as a means of chronicling our homeschool journey has evolved into a catharsis of my soul during this trial of faith and strength. But, this week, as the initial ... dumbness slowly ebbed from my mind, and the direness of the situation with Emma took hold, the thought that, somewhere in my mutterings, I may have chronicled something ... some missing piece of the puzzle that might just hold the key to what was happening, what was ... wrong. Because it just does not make sense - Emma thrives for a bit, then hits the proverbial wall. So I read and re-read ... slept a bit and read again. And sure enough, I have documented the trend of Emma to fail each time they supplement her formula with a fortifier. I have copious amounts of notes to bring with me to the hospital tomorrow, in the hopes that the doctors - the revolving-door doctors who may just see "Nec - 4 times" on her chart - might listen to the ramblings of just the mom. It has to be the fortifier. It is there in the chronology. And if it is, then the disease does not exist in my child's intestines, but is being caused by an outside agent, an agent that is not necessary, not vital to her survival. And that, my friends, is much better than the alternative.

When It Is Just Not Meant To Be ...

Emma ... Emma .... Emma is sick ... again. There is a surreal quality to those words, one I just cannot seem to wrap my brain around. How? How is it possible that, for a fourth time, the baby who was so close to coming home is, once again, lying naked on a warming bed, being fed only TPN, and undergoing X-rays and other diagnostic tests round the clock? The prognosis at this point is poor, involving many months of rest for her intestines, one more chance at feeding with the most basic of formulas, and the possibility of a small bowel and liver transplant somewhere around the age of 1 1/2. The doctor speaks of "growing" her, getting her stronger and bigger on the TPN, while resting her bowels, and hoping they regenerate in the months - months - to come.

It is funny - the doctor speaks of "growing'' her and here I was hoping to "raise" her.

The Other Side of the Glass ...

I have just returned from a visit to the hospital. It was during this visit that I realized ... we are on the other side of the glass. It has been 4 1/2 months since I first yearned to be on "the other side", the glass barrier that separates the critically ill babies from the ones progressing towards discharge. 4 1/2 months and a different hospital ... 4 1/2 months of three critical illnesses, countless tests and x-rays and IVs and procedures ... 4 1/2 months of poor prognoses, of "there is still a chance", of lost sleep and sleep that, when it did come, was deeply disturbed - and deeply disturbing ... periods of idleness and others of manic activity, of lost hope and hope clung to in desperation ... of faith ... faith shaken and faith regained. Today, Emma is at full-feeds once again. Tonight, I will hold my breath as we revisit this juncture where she has been twice before - the place where her intestines seem to be taxed to their limit, the place where she has come to only to fail. And I will pray that this time - oh, please, this time - she will not fail. She is off oxygen, there are no IVs penetrating that tiny body save the Broviac catheter that the doctors dare not pull just yet ... There is nothing to keep her from being home by the month's end ... if only she does not fail this time.

They performed an ultrasound on Emma today to ascertain the extent of damage suffered by her liver due to the TPN. I stood near her bedside, trying to busy myself with folding her clothes and tidying her little corner of the ward. But, my eye was drawn to the glass, and what lay on the other side. So many ill babies, so many machines preserving the tiny lives that dwell in the glass enclosures, so few visitors, so many nurses. So many noises - noises punctuated by louder, angrier noises that mean something is amiss, something needs to be attended to right now, someone has a need that, if not met, will mean life no more. My time there is over, and I am so grateful. But the memories ... Oh, the memories are fresh, raw in their intensity. The day they whisked her away in a helicopter, a day I sunk to a low I have never felt before - and hope never to feel again. The eight-day bedside vigil when air was pulsed into her lungs ...lungs so fragile, so damaged the doctors can only describe their healing as "miraculous". The swollen, red body of a baby who existed, but whom I had never really "met", to whom I could only offer comfort through the touch of my finger on her hand ... a hand so small ... a baby so small ... so very, very small, a wedding ring could encircle her tiny wrist ... The train of doctors who have treated her, the faces of the many nurses, faces I know, but names I cannot recall, delicate touches and calming voices more readily come to mind ... a level of expertise and dedication I am eternally grateful for. The one nurse who, seven months pregnant herself, had the presence of mind to discreetly provide me with privacy by bringing a curtain to the bedside as the reality of Emma's condition hit me full force ... (To her, I am forever grateful .) Too much to remember, too much to forget, the paradoxes pervade my brain, resulting in a jumble of emotions, a frenzy of activity at times, juxtaposed against an overwhelming feeling of "I cannot go on". Our lives here will go on - come what may. But life will never be the same. But, in that difference, God willing, we will have Emma ... here where she belongs.

Pandora, the Sloth, and Bach ...

My second son is ... well, to put it succinctly, he is lay zee!!! Lazy as can be. Lazy as a dog on a hot day. Lazy as ... his nickname is the sloth. Get the picture? He is also very bright - learning comes very easy to him, requiring little effort. In other words, he gets a lot out of doing very little. This academic year, I decided to challenge him a bit more, and he has met those challenges. But it irks me, while doing our studies, when I feel he is not very attentive to the subject at hand. So, it is with no small suprise on my part that, today, while I was correcting his math, he remarked on the music playing on Pandora (a free music station that streams over the internet, allowing you to customize your choices): "Ah, a Bach cantata, I believe." I quickly checked for myself, throw off by his words, his perception, his abilty to utilize the Fine Arts lessons we have been focusing on as a group. Sure enough, he was right. It was a Bach cantata. Unbelieveable.

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.

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.

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.

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.

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 ...

Drove to Philly yesterday, and I just have one thing to say:

The correct sequence is ... turn signal, then brakes -NOT the other way around!!!

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.

Tomorrow, Tomorrow ...

Full feeds tomorrow!!! No more TPN!!!

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."

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.

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.

My 100th Post ...

That is all.

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.

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 ....

Fascinating ...

http://www.immunizenc.com/images/PDFs/06%2001%202009%20Alternative%20Schedule%20Memo.pdf



In researching an alternative vaccination schedule, I turned up this gem - a note to physicians in North Carolina stipulating that, if they do not adhere to the guidelines set forth by this particular board, despite parental objections, they may be refused access to state supplies of vaccinations. Now if that scenario doesn't scare you, I just don't understand.



{The alternative vaccination schedule is one proposed by Dr. Sears, and is actually an attempt to mitigate any damages that vaccines MIGHT present to the developing infant. It seems like a wonderful compromise between the known and the unknown regarding vaccines - keep the good they do and reduce the risk to the still-developing child, especially during times when they are most vulnerable.)