Half-Baked

You're this many!

2011-01-03T20:06:00.000-05:00

Four? Already??

It just doesn’t seem possible. It passed in the blink of an eye, and yet, when I think of all you’ve been through it seems it must have been decades.

For one so small baby girl you seem so damn strong…

I might not have been able to protect from all around you but I promise with everything I am that the bond between us can't be broken.

Just look over your shoulder...

I'll be there always baby.

An Ounce of Prevention - When an ounce can make ALL the difference

2010-11-17T18:45:00.000-05:00

Today is National Prematurity Awareness Day. As part of the effort to raise awareness the March of Dimes has invited bloggers to join the fight and share a post related to prematurity. While I haven’t been able to read every post yet there are some truly amazing and awe inspiring stories there. Some truly heartbreaking ones also. What you won’t find just yet is Cassie’s story. There are several reasons beginning with the fact that I just can’t write it yet. Almost four years later and the words really still don’t come. I wonder if they ever will.

There is, however, a story that I can share. A story that is decidedly less than awe inspiring but one that I hope can have a positive effect despite the pain and shame involved.

You see, I am NOT one of those Moms who did everything right and had a baby born early through no fault of her own. Cassie’s early birth was my fault. I smoked, had high blood pressure, and did not stop working when my doctors urged me to. Shocking isn’t it? I mean we all know there are some women who treat pregnancy that way, but they are the low income, undereducated, disadvantaged, “welfare” moms right?? “Those” moms. Not a college educated woman who grew up in the “right” neighborhood, went to the “right” private schools, who has insurance and access to the best of care??? THAT kind of Mom would never risk the health of a child like that!....Would she?

And yet it was all so easy. I mean I had smoked since I was 11 years old. I’d already had three perfectly healthy boys despite being a smoker and it wasn’t like I smoked much – just a few cigarettes a day. That’s not really that bad is it? The same went for my blood pressure. Yes I had had issues with my blood pressure during each of my pregnancies but my kids were perfectly healthy and nothing bad happened right? And stop working?? Were they kidding me? I felt FINE and who was going to feed my family and keep a roof over their head? This was just all a case of the doctors being cautious and covering their asses wasn’t it? Since I felt fine it was just all so easy to gloss over and dismiss.

Until it wasn’t.

That day was January 4,2007, 25.1 weeks into my pregnancy. By this point I had given in and taken leave from work but because I wanted to spend the holidays with my family I had insisted there was no reason to be hospitalized if I tracked my own blood pressure and saw the high risk OB as often as she wanted. On the fourth she sent me for a detailed ultrasound. I was sooo ridiculously excited! You would not have believed my completely naïve joy at finding out that we were having a girl! Our fourth child was going to be a girl!

And then suddenly (to me anyway, not so suddenly to my medical team I’m sure) things began to circle the drain. The doctor viewing the ultrasound determined that the blood flow in Cass’s umbilical cord was reversing, and that she hadn’t grown since the last ultrasound. They sent us to the hospital where they began to monitor and it was determined that things were going to happen soon. The doctors talked to us and began what was supposed to be the first of several steroid shots to help mature Cass’s lungs over the next few weeks in case she came early. When they left the cubicle after explaining all this Mike and I sat in stunned silence and then began discussing how we were going to t handle me being admitted for a few weeks only to have the team come running back in because they Cass had started to fail. We were on our way to the OR so quickly that almost everything else is a blur. The few things I remember clearly though are forever etched in my soul. The neonatologist that came in to give the emergency run down of what we could expect saying that Cass was measuring so small that they simply did not know if she would even be big enough for them to tube her.

Her final words were “It really all is going to depend on your daughter”

Depend on my daughter? No! It wasn’t supposed to depend on my daughter! I was the one who was supposed to be carrying her and keeping her safe! Wait…Oh no…I was the one charged with keeping her safe and I freaking failed! I didn’t pay attention. I thought I was exempt! No! Stop! PLEASE don’t let this be happening!! I’m SORRY – I didn’t understand! I’ll do it better now!

The problem is that in real life this story doesn’t end with me waking up, throwing open the windows, and shouting my joy at my newfound lease on life and second chance. In real life a 1lb 3oz child is born fighting for every breath. In real life we spend months hanging over an isolette begging our daughter to live one more minute – take just one more breath. That’s where my story ends and Cassie’s begins.

Why do I share this now on Prematurity Awareness Day? Why not share Cassie’s incredible success due in such a large part to the research supported by the March of Dimes? Because if we are truly going to “Fight for Preemies” then we need to support the MOD’s most important mission. Their mission to educate and help PREVENT prematurity. Prevent it so that no child has to fight the fight that Cassie and so many other children fight. Prevent it so that no parent is EVER left with empty arms due to prematurity.

I would love to be that Mom who did everything right and just had a baby prematurely due to circumstances beyond her control. I’d give anything to have held Cassie to term and not have dealt with prematurity at all.

Before people respond with reassurances that there’s no way to be sure my actions caused Cassie to come early, that I’m a great Mom and need to forgive myself…I know and I have. After everything else she has been through and will struggle with Cass does NOT need a mother wallowing in guilt. But forgiving myself is not the same as denying responsibility. There were things that I did and decisions I made that contributed to Cass’s early birth. The doctors never really did give me a full explanation. It could have been my undiagnosed heart issues (I had a heart attack several months later), my body could have reacted badly to all the blood pressure meds I was on etc… More than likely it was a combination of all of those things. Quitting smoking or taking leave earlier might not have guaranteed I brought Cassie to full term but it could have added a few days or weeks and a few more ounces and that would have made a world of difference in her struggle.

So my hope in sharing this today is that we all give consideration to the fact ALL prospective parents need to be educated on how to care for themselves and their future children, and ALL parents need to fully understand the risks involved. The education and outreach that is such a strong part of the mission of the March of Dimes isn’t only meant for the welfare office or the crack addict down the street. It is meant for your sister, your wife, and your best friend. If you know and love someone who seems to mistakenly believe it doesn’t mean them, that they know what they are doing, please share my story with them.

The Ghandi Experiment - BE the change…

2010-10-01T15:37:00.000-04:00

I am SO freaking tired.

I’m tired of feeling annoyed. I’m tired of feeling outraged at the latest injustice directed my way. I’m tired of my first reaction being snarky. I’m tired of assuming the other person is stupid or out to get me. I’m tired of feeling underappreciated and undervalued. I am so damn tired of so often seeing the bad instead of the beauty.

One of my favorite quotes is from Ghandi who said: “We must be the change we wish to see in the world.”

I also firmly believe that my outlook and my intention go a long way toward determining my reality. If I make an effort to see the beauty then it will be there. If I try to see past the offense I might find that the offense was never there or in the least that it was not intended. What if (gasp!) it was never even about me to begin with? (I know right?!?)

In order to be the change that I wish to see in my life I am going to commit to one month of documenting that change. At least once a day for the month of October I am going to strive to find an opportunity to assume the best about someone, to respond from a place of security rather than defensiveness, to ask “How can I help?” rather than snarl “It’s not my job!”. I’ll try to assume someone is busy rather than ignoring me, or having a bad day rather than trying to ruin mine. I’ll recognize that the other person is at least trying rather than roll my eyes at their stupidity. I’ll then post it as my Facebook status at the end of each day.

I’m hoping that this will become habit and that pushing aside the negative and seeking out the positive will enable me to begin seeing the positive to begin with.

Because there’s just so very much of it to see…

In your honor....

2010-09-25T14:12:00.000-04:00

Sometimes I really can be an idiot.

I’ve been feeling anxious and it took me a while to identify why but what it finally came down to is that today is the day it has been one year since you’ve been gone. Of course I knew that and had plans to get together with everyone today but I didn’t realize that I felt like I should have done some thing in your honor. While I understand the peace it brings to some, I’m not the kind of person to go lay flowers at your grave – you’re not there for me. But I felt like I should have marked the day in some concrete way and it ate at me.

When I left the house this morning to go to the grocery store for some ingredients for the chowder and clamcakes we would all share later today my thoughts and feelings were a whirlwind. As I walked to the car, the wind whipping the trees behind our house seemed to agree with me. I stopped to watch and thought “How appropriate – hurricane weather”. As I stood there, letting the wind whip my hair in my eyes and feeling the tears well up the weather slowly calmed. I stayed and tried to match my breathing to the slowly calming wind until it was a gentle breeze crossing my cheek and I felt a peace that had been missing all week. All was well and it would work out.

Driving to the store I found my smile and some good music to sing along with. I waved to the traffic crew that already looked hot and tired and one smiled back. I tucked my careful little list in my purse and just walked through the store picking up the items that called and said they would help with the day. I brought everything home and cleared the kitchen so it would be a happy place to work in and then started cooking. I sang and cried as I chopped the onions. I smiled at the thought of how happy Scott would be that he finally got his true Rhode Island Clear chowder tonight. I worked the herbs and spices in my hands before adding them to the dishes thinking about what each one of them added…thyme for courage and love and healing, bay for strength and protection. I threw them in as I always try to do with my own thoughts and hopes for the people who would be eating the dish. Cassie and I stirred some ingredients in a bowl and giggled about stirring our love in and she blew a kiss in the bowl and said “See, I can stir in my kisses!”. That was my “I coulda had a V-8!” moment. I didn’t need to look for a thing to honor you…everything I was doing honored you. There was simply nothing more important to you than your love for your family and you loved nothing more than getting them together and feeding them. The love and care I was putting into the meal we were going to share was one of the best ways I could honor you.

So in your honor Mom I hope to bring them comfort and love and peace and while we sit together and share the food and our memories I know I’ll find a moment to look around and see your smile and delight.

With all my love…

Getting Over It...

2010-09-21T19:21:00.000-04:00

It hurts. It’s supposed to hurt.

People talk about “Getting over it” or “Moving on”, but I think those are simplifications of something that it is incredibly difficult to express. I haven’t gotten over the death of my Mom or Dad. I certainly haven’t moved on from Cassie’s premature birth and traumatic first few months. I’m positive I’m never going to let go of my guilt or worry over her future. It’s not going to happen and I really don’t think I want it to.

The pain, anger, sadness and other emotions that I feel over those things are part of who I am and I really love who I am, warts and all. I don’t need to get over missing my parents, or other events in my life any more than I would need to put aside the joy I find in my husband, my children, or any of the other things that bring me happiness. They are my feelings and I am entitled to them. When I feel that they are overwhelming me, I let myself experience them. I stopped fighting them a long time ago and gave myself permission to feel them, to own them, and in the process to help find them a place in the fullness of my life. Whose rule is it that my sadness and anger are any less welcome or valid than my joy or happiness?

I know that convention assigns some emotions the role of bad and some good – but do we ever ask ourselves why? My anger has a purpose. It can motivate me and spur positive action. My sadness has a function. It serves as release and a way to honor the people or things that are important to me.

Too much of anything, even happiness and joy can be detrimental to our psyche. So why the tendency to get lost in sadness or burnt out by anger? It’s different for each individual and there are certainly chemical and physical issues that contribute to the equation, but I think that one reason is that with happiness and the other “positive” emotions we experience them fully. We let them in. We encourage them and we use them up until the experience is fulfilled. Sadness and the like we run from. We hide. We do anything within our power and go to extreme lengths to avoid them. Rather than embracing them for the gift that they can be, we push them away. In doing so we never let them run their course and we never complete them. If they are never consumed, and always unfinished, we are always at their mercy.

So when the lyrics on the radio sing of a man holding his wife’s hand as her heart beats its last and my thoughts stray to my wish that I had been there to hold my mother’s, I’ll cry. I’ll cry at my desk and ask the person who comes over to ask me a question to give me a few minutes. I’ll cry because I have a right to and I NEED to and when it passes I will feel spent but complete.

When I need to be somewhere to help someone I love who needs me and just driving to the place where they are brings about an anxiety attack and some raging PTSD I will stop and let it roll through me. I will rage, and choke and sputter and then breathe through it and try to hear what it is trying to teach me. Is it too soon? Is something unfinished that I need to deal with? I’m still working my way through that one but I have to say that I’m glad I felt it and I’m glad I kept going. I think my purpose that night is going to be part of the solution.

Maybe there’s something wrong with me but I really feel like those “bad” emotions are beneficial to me and help me to be the person I’m meant to be. Am I alone in that or does anyone else feel that way too? How do you deal with those “negative” emotions?

No words...

2010-05-09T15:13:00.000-04:00

For Maddie

2010-04-07T12:15:00.001-04:00

Words are absolutely failing me today...there's so much I'd like to be able to say but my heart just hurts and everything I try to write becomes a blubbery mess.

Instead I'll urge you to visit Mike and Heather's blogs. Read about their beautiful Maddie and offer some support if you can. Then if you're so inclined visit Friends of Maddie and donate to buy a NICU Family Support Pack.

On April 25th our family will be walking in the March for Babies. We walk for Cassie, in honor and remembrance of Maddie, and in the hopes that someday all babies will be born healthy and full term. Please consider joining our team for the walk or donating to the March of Dimes in Maddie's name.

My blog is purple for the month of April and we will be planting some beautiful pansies this weekend to honor Maddie and celebrate both her life and the impact she and her family have made on so very many people across the world. When I look at them I will think of her beautiful smile and how it outshone the sun in that yellow outfit on that Perfect Day.

Mike and Heather, I'm just another internet "stranger-friend", one of what must be 100's of thousands, but your Maddie, your family, and the good that you have dragged out of this are indelibly printed on my heart. It's my sincerest hope that all of our voices and love help to support you today and always.

You are beautiful - the "Sisters" edition

2010-03-31T14:57:00.000-04:00

After reading Catherine and Loralee’s posts today sharing the beauty they see in each other and exhorting their readers to tell someone they are beautiful, I knew immediately who I wanted to tell.

My three sisters. I don’t think I’ve ever said it except in a quick dismissive “Don’t worry, you look great” kind of way but I’d like to now – I need to say it now.

Individually, my three sisters are the most beautiful women I know. As a unit, on the rare occasions we allow ourselves to be a unit, we are beauty defined.

I don’t feel comfortable sharing their names with the whole internet without their permission, and since in their infinite wisdom (@@) our parents decided to name us all with the first initial “K” I’m going to refer to them in the order that they came into my life (I’m the oldest).

My first sister. I’ll admit to probably not being able to see your beauty and charm when you first came along, although I’m pretty sure that the story about me trying to throw you down the stairs was exaggerated. But damn woman you grew on me. Your beauty reminds me of a comet. You had a rough start and I watched you meet many obstacles with a force and determination that simply burned right through whatever was in your way. I raged against that single-mindedness at times, but I am not unable to see its beauty. We have differences and we’ve hurt each other. There may never be a time where we fit the classic sister description, but you own a piece of my heart and will always be a part of me. When you doubt your own beauty, see yourself through my eyes and heart as the little girl playing so joyfully in the garden at Boston Children’s – things as “minor” as constant pain, horrifying meds, and a scary hospital were not going to interfere with your good time and the joy and happiness in your eyes was mindblowingly beautiful.

My second sister. Your beauty is like the moon. Outwardly you can be quiet and unassuming, but you love with a force that can move mountains and tides. Being on the receiving end of that kind of love is to be graced with unforgettable beauty. When you doubt your beauty, please try to see yourself through my eyes on the day you walked into my hospital room arms full of balloons and stuffed animals and god only knows what else to celebrate Cassie’s birth. Just like the rest of us you knew damn well that she might not make another day or even hour, but you were going to love her and celebrate no matter what. That beauty and love enabled me to get up and keep going and believe that we all might make it through.

My baby sister. Darling you are the sun. By the time that you came along, I was pretty convinced that happiness and laughter only existed in books or were for other people. Things seemed pretty dark, but then along came this bundle of energy, and light, and laughter. Things changed in our family then, and I found myself taking on more responsibility and taking care of the three of you. I’m sure that many would argue that I was too young and that it harmed me and they’re probably right. I would say without a doubt that it couldn’t have been all that great for the three of you – I simply didn’t have the skills to be what you needed and I made so many mistakes. But your love and your smile and your laughter made it all worthwhile. You have a light that emanates from you and simply blesses everyone lucky enough to be around you. When you doubt your beauty, remember that it is your sunshine that usually banishes my winters and discontent with myself.

This last bit isn’t so easy and I tread lightly in the hopes that I don’t hurt any of us, but I really feel that I need to say this at least once before it’s too late and I’m afraid I’ll never be able to say it aloud.

I meant it from the bottom of my heart when I said that when we are united, we are beauty defined. It might be that we’ll never see that again in this lifetime, but I needed to let you all know that I believe in that beauty. This isn’t a guilt trip or an attempt to force us all to get along. I actually realize that it might just not be in the cards for all of us to be “together” and that each of us has to do what works for them. For what it’s worth I don’t think that that is necessarily “bad” or that any one of us is to blame – we are all doing what we need to do to make the best life that we know how.

Despite that, I can’t let this go without acknowledging the beauty that is us as a group, as a unit that is “Sisters”. Whether it’s the four of us side by side in ridiculous matching outfits smiling into a camera despite the fact that there was likely a knock-down drag out argument 10 minutes before, eating ham salad sandwiches (with crushed chips or Doritos!) or Caserta’s pizza @ Scarborough, or holding hands and holding each other up as we followed a casket down the aisle, there is simply nothing more beautiful, more strong, or more close to my heart than us together as sisters. I’ve heard it said that the strongest, most beautiful flowers grow in adversity – how lucky we are to have all grown together in the same garden.

No matter what happens to or between us, my wish for all of you is that you always are able to keep that beauty in your heart and that it makes you as happy as it makes me.

If you’re reading, take a moment and tell someone, anyone, that they are beautiful. It will be great for them and you’ll be amazed at what it does for you.

One, Two, Three Strikes...I'm out

2010-03-04T16:07:00.001-05:00

Strike One: To the absolute delight of his Dad, my 15yo is capital S Serious about baseball. All of my boys have played, we even helped to run the local youth league for a few years, but this is the child that really cares about it. So much so that he has spent every Sunday morning for weeks attending pitching lessons to try to perfect a naturally strong arm. He’s good – no illusions here about “a future in the big leagues” – but he has talent and he enjoys it SO much. Tryouts for the high school team are Monday and there is excitement in the air.

So what’s the problem? Welll, ya see, ummm, yeah, it's kinda like this...I would never let him pitch for too long as a youngster because he threw sidearm. It was a great pitch for the younger leagues…natural curve, fast as hell, dropped at the last second…coaches LOVED it. But I knew that throwing sidearm was no good for his growing arm and I placed severe limits on the number of pitches I would allow him to throw. Coach after coach tried to help him correct his form, but he stubbornly held onto that sidearm pitch. That’s what led to the pitching clinic this winter. He wants to pitch more competitively and I insisted that he work with a trainer to correct his pitch so he doesn’t injure himself.

This was the responsible Mommy thing to do right? Well, the boy child enthusiastically agreed. We interviewed several baseball clinics and found one that understood our concerns and the boy attended and ~~worked his ass off~~ applied himself admirably. He corrected his form and the trainer announced last weekend that “When he’s in the slot he’s unhittable!” Score one for Mom being such a stubborn bitch. It all worked out perfectly!

Until….wait for it….

He woke me up this morning to tell me that his elbow “popped” and was killing him.

F...M...L! I just plain suck at this. All that time arguing…with him, coaches, his father in an effort to avoid an injury just like this and “I” end up being the one who gets his arm injured right before tryouts.

Strike Two: Just to add some more tarnish to my wonderful mommy tiara? The 9yo who I sent back to school yesterday because he was feeling better was hacking up a storm this morning which means that I’ve probably infected at least half his class.

Strike Three: and the baby woke up with a fever.

Seriously…who thought it was a good idea to put me in charge of children??

Because of you

2010-02-17T20:44:00.001-05:00

This was me – still could be in a lot of ways.

I struggle every day not to always take the safe side, to dare, to try, to put myself out there and immerse myself in this life rather than sitting back and watching safely from the sidelines.

There was a time in my life that I really didn’t have my own identity. I was “Mrs. Mike”, the boys’ mom, a sister and daughter…but Karen was nowhere to be found. I don’t mean that those other identities aren’t part of me – they are an incredibly important and vital part of me – they just aren’t the whole of me. I think everyone struggles with this in some ways. I frankly don’t know a Mom who is being honest with herself who won’t say that at least occasionally she has felt like she “lost” herself. The difference is that I wanted it that way. If people only knew me as an extension of my husband or kids then they would not get a chance to figure out that I wasn’t really worth knowing.

Then the bottom dropped out and Mike and I separated. While I don’t recommend the method to everyone, I have to tell you that suddenly finding yourself flat on your ass and alone with 3 kids with no idea of who the hell you are or what you want will go a long way toward ~~scaring the shit out of~~, ~~forcing~~, helping one to find ones self.

Funny enough though, there was a self to find. It was a frightened self, alone and naked and wanting to hide, but with just enough self preservation left to get mad, take a look around and decide “Fuck it – I am NOT going down like this!” I’ve made it a priority every day since then to nurture that self and while it’s not always easy and there are days that I still really would like to hide, I’ve pretty much found someone that I can love and that’s something I don’t remember feeling before.

I look at my 3yo daughter and see that she is so completely in love with herself. She has yet to learn to be ashamed or embarrassed. She does not self-edit and while she is learning empathy and to consider others people’s needs, she does not automatically value others needs as greater than her own. I see pictures of myself at that age and can see that same love of self in my own eyes. What beat it out of me and why did it take so long to find it again?

The answer is unfortunately in the question – it was beat out of me. Or perhaps it would be more accurate to say that it was beat into me until it was hidden under too many layers of bruises, belt marks, black eyes, and scars on my heart from every bitter insult screamed at me from the depths of their pain. Buried under years of watching as they hurt each other physically and emotionally and living in dread of the certainty that they would eventually turn it towards my sisters and I. Buried under the guilt of not being able to protect my sisters from it and the shame of knowing that sometimes I was relieved that it was them and not me. Buried with my own anger…

See, the real me that loved herself so unconditionally? Not only did she learn that she would be punished for being herself, but she was ANGRY! She hated what was going on and that anger and that hate was simply too ugly – too much like what she saw in the people who were hurting her – it made HER just like THEM. So it needed to be buried deep where no one would ever find it.

Now I’ve taken that little girl back into my heart. I’ve let her know that it’s OK to be angry and to hate what happened, but that at the same time it was OK to try to see THEM a little more clearly and forgive them for acting on their own anger and pain.

Mike and I were able to forgive each other and repair and recommit to our marriage and I am now the mother of four rather than three. I am thrilled to still be “Mrs. Mike” and am very proudly “_____’s Mom” but at the same time I am also that little girl who loves herself so very much. The three of us join hands, gather together all of our other selves, and dance this dance with joy and abandon – more determined than ever to live the hell out of this life we’ve been given. I still get scared, I still get angry, and I still get hurt – but I’ll be damned if I’m going to hide from it anymore. I’m going to face it and work my way through it because on the other side? On the other side there is joy and love and forgiveness like I’ve never allowed myself to feel before and I want that – I deserve that!

While it may have been “Because of them” that I spent so much time hiding from myself, it is also because of them that I am here and there were many moments and glimpses of love and happiness that co-existed with the anger and pain. They didn’t enter this world, begin their marriage, or decide to have children with the intention of hurting each other or us. They were doing the same thing we all do, trying to create the happiest life that they could and they got lost along the way. They are both gone now, but my most fervent hope for them is that wherever they are they are, they have been able to shed the anger and pain and are once again enjoying the love and happiness so evident in their young eyes and that they both so richly deserve…

Half-Baked - The Musical

2010-02-10T18:07:00.004-05:00

So, my previous attempts at blogging regularly have sucked royally. I post once or twice and then go months without posting anything at all. I read and find myself caring about SO very many bloggers, but hardly ever actually take part in the community. So, I’m making two new promises to myself.

I’ll no longer be a “lurker”, if I read something on your blog that I have something to say about I’m no longer going to let me inner editor stop me from commenting. From now on when I hear that little voice ask “What makes you think he/she cares what you have to say or needs your support?” I’m going to comment anyway.

I’m going to post on my own blog at least three times a week.

To start myself off and because I seem to need some kind of “lead in” to get past the “Why would you share this with the internets?” , I’m going to frame most of my posts around whatever music/song has made me think that day or best fits my feelings for the day. So – a song for your listening pleasure and a little bit of my life/thoughts on the side – not too bad a deal right?

Now make no mistake, I’m not a music critic and I have pretty unsophisticated musical tastes that I can promise you will be all over the place. I do, however, have an inner music video producer (why yes, it *is* very crowded in my head!) that loves to take every song I’m listening to and turn it into my own personal VH1 ready music video. I may not be able to record the videos playing in my head, but at least I'll be able to record my thoughts about them!

Slipping Through My Fingers

2010-02-10T17:30:00.004-05:00

Well, this one was a gimme…my oldest is graduating from high school this spring and we are in the midst of college application interviews, school visits, and acceptance letters. Did you know that it’s considered bad form to try to “lose” applications to schools that you feel are too far away? AND that surreptitiously signing on to your son’s Common App account and deselecting those same schools is also frowned upon – WTF!?! Not only that, they will then punish you by accepting said son and then forcing you to fill out a FAFSA form so that you can afford their tuition. I always love to spend four hours filling out forms only to have some government agency determine that, “Yep, you are officially poor and need help paying for college!” I didn’t know whether to celebrate or go hide in a corner somewhere.

As amusing as that all is, the issue here is that I’m of two hearts about this. I’m so freaking proud of this kid and watching him become the young man that he is becoming never fails to fascinate and enthrall me. At the same time? I’m just not ready! I look at him and cannot help seeing the little boy with the cutest bowl cut in his Disney pullover headed to nursery school. The past 17 years have been so full and yet I find myself wistful for the other things I would have like to have done with him. It’s almost as if I can see the time running out and the more I try to capture it the quicker it slips through my fingers. Like the song, I sometimes wish that I could freeze a moment in time. The thing is, if I did, then I would miss out on witnessing his transformation into the most amazing adult and I’m just not willing to give up that wonder and awe.

So how do I reconcile this? I guess the answer will be to somehow cherish rather than try to hold onto every moment, to support him as he ventures out into the world, and to watch in confusion as somehow my breaking heart expands rather than shatters and manages to envelope him no matter how far way he is…and then turn around, look at the other three (15,9+3) and realize that I’d probably better buy stock in the closest liquor store!

There Be Dragons...

2008-11-02T11:41:00.011-05:00

I read this post from one of my favorite bloggy thinkers and initially my first reaction was “Wha?” and wishing that I could have a little of whatever he put in his coffee...

This particular battle snuck up on us. It started this summer with some unusual bouts of tears and meltdowns at weird times. Oh well, it’s been a tough year and he IS only eight – he’s allowed a little bit of drama. Hugs and a little extra attention seemed to settle him down. Then came the complaints that he couldn’t breathe and that his chest hurt. That made me pause, but it would go away in a minute and only happened when he was upset about something so OK he was just getting himself too worked up. THEN a Sunday morning music video set him off on a crying jag that had him breathing hard and when I bundled him up into a big hug I realized that his heart was beating so hard you could see it – WTF??

Sitting in the ped’s office this week…”When does this happen? How long does it last? What do you feel?? Visions of every sharp word, every impatient look, EVERY. SINGLE. LAST. “What! Christopher!” said in that exasperated won’t you just give me a minute voice…

We’ve got a referral to a pediatric cardiologist to rule out any structural or rhythm problems related to the lovely DNA that we passed onto him, but barring any surprises there it looks like he is having anxiety attacks.

Anxiety? After we’ve all but stood on our heads to prove to this child that everything is OK and that there is NOTHING to be worried about?

Then BHJ’s post came back to visit…that picture of Jackson wanting to battle the dragon that had taken up residence in his sisters room. We’ve been living side by side with Dragons for more than two years now and I’ve been telling Christopher they’re not real…

· Cassie’s premature birth and fight to survive
· My heart attack
· Cassie’s surgeries, constant Dr’s appt’s, and visits from EI

And then there are the other Dragons, the ones that still lurk in the shadows, the ones that may or may not decide to come live with us, that we are afraid to name because that might make them real…

How stressful must it be to see all of these Dragons, hanging out with us plain as day, and have the people he trusts the most lie and tell him they’re not really there. We’ve been trying to protect him and hoping against hope that we could deal with the Dragons on our own. Or maybe we’ve really been trying to convince ourselves that they’re figments of our imagination. Either way, we’ve left our little boy feeling as if he’s the only one that can see them and that he needs to deal with them on his own.

So now it’s time to admit it – the Dragons are here, they have been here, and they’ll probably be with us for quite some time. It’s time to take his hand, face my own fears and confront these beasts together. They are awesome and terrifying. Some we will have to battle and some we will have to embrace and learn from (those are the terrifying ones). But no matter what type of beast they are we will face them together from now on. The Dragons are real and it’s time to stop living the fantasy that everything is OK…

Back to our regularly scheduled chaos

2008-09-21T16:16:00.004-04:00

So with this latest drama winding down things are getting back to normal – well normal for us anyway!

Cassie is feeling and acting much more like her usual self. Her eyes are still red and you can tell that bright lights are uncomfortable, but she’s keeping her eyes open now, running around yelling at her brothers and doing her “happy feet” dance again. Currently she’s right by my leg begging and stealing bites of my warm carrot oatmeal bread. The house just cleared out for the third ballgame of the weekend and I have a blessed few minutes alone with Cassie, my laptop, a cup of coffee and a snack…life just really doesn’t get much better.

It’s been a great day all around. Back to normal around here means that I spend the first half of my Sunday cooking for the rest of the week so that means that we have homecooked meals this week instead of the takeout and convenience food we’ve had for the past two weeks – Yeah!

When things are running smoothly, Mike and I have a pretty good system going. He’s responsible for the bulk of the weeknight cooking, but I try to prep as much as possible for him on Sundays. This week that means there is meatballs and sausage ready to be heated up and served with pasta and foccacia topped with the last of the grape tomatoes that just needs to be warmed in the oven. The enchilada sauce is made and the chicken cooked and shredded ready to be put together for Tuesday night’s dinner. There’s quahog chowder sitting in another pot and the clamcakes are prepped, he just needs to mix the wet with the dry and fry them. A casserole dish full of macaroni and cheese just needs to be baked off and served with some ham steaks on Thursday. The carrot oatmeal bread is ready for a couple of breakfasts this week and there’s a quick brioche in the oven ready for French toast one day and bread pudding for dessert one night. All in all not too shabby for a few hours time and as an added bonus it relaxes me and helps me to get ready for the long week at work.

Back to normal around here also means that all this productivity was not without its pitfalls.

Although this isn’t a cooking blog and I’ve already talked enough about food, I do have one (painfully earned) kitchen tip to share with you…

You know that foodsaver we’ve all seen the commercials for? The one we look at, thinking it’s a good idea but who wants to buy all those rolls of bags when you can just suck the air out of regular bags on your own?? It just got added to my wishlist.

If it’s that time of year and your hot pepper plants have gone nuts producing fruit because they feel the nip in the morning air, and you are just SO. OVER. IT. and decide to pull the plants up, pick every last pepper, freeze what you need and pawn of the rest on unsuspecting friends, coworkers and family heed the following warning.

If you are freezing HOT peppers, sucking all the air out of the freezer bag before sealing it is a BAD idea. You won’t realize it for a second or two and then suddenly your lips will go numb, your mouth will start burning and your throat will be on fire…if that doesn’t convince you (and it wouldn’t convince me either – I never heed warnings thinking that I’m just so much smarter than the average bear) let me also warn you that you will not be able to taste that wonderful sandwich you just made yourself. You know, the one where you toasted a bagel lightly, rubbed a cut clove of garlic over it ever so lovingly, covered it with slices of the last beautiful Brandywine tomato from the garden, sprinkled it ever so lightly with fresh cracked pepper, and few delicate crystals of your hidden stash of Fleur de Sel, showered the whole thing with mounds of Pecorino Romano, drizzled it with a light fruity olive oil and then popped it under the broiler till it was luscious and bubbly and perfect? Yeah - THAT sandwich…you will not be able to taste it because you just fried all your taste buds – you may as well eat cardboard! You’ll end up giving it to your sixteen year old son, who will inhale it in two seconds flat, not even thinking to savor it and you’ll want to cry.

If that sad tale doesn’t convince you, don’t say I didn’t warn ya…

It's over...favor granted

2008-09-19T15:57:00.004-04:00

Well Cassie’s eye surgery went like clockwork. We won’t know for sure if it “took” for another couple of months, but she made it through the operation without any hitches at all. She had ear tubes put in a few months ago and had a lot of difficulty breathing after the anesthesia. The few months must have made a difference though because she had no problems whatsoever coming out of the anesthesia this time – in fact she was screaming like a banshee letting everyone know EXACTLY how displeased she was as they brought us back to post-op.

Her recovery has been pretty miserable, but not in an alarming way. Her eyes are irritated and painful, so she’s been pretty quiet and keeping her eyes closed, mostly just clinging to Mom the first two days and that was just fine by me. I’m back to work today and counting the seconds until I can get back home to her.

All 34,200 of them…

Warped sense of humor warning!
**************************************************************************

After taking time for all of us to each have our own little meltdown when we realized Cassie really was going to be OK, we were all sitting around talking about how Cassie’s eyes looked and that she should be more comfortable in a few days.

One person mentioned that the whites of her eyes were bright red, another that she was pale and had dark circles under her eyes, it was bothering Christopher that her tears were bloody…there was a pause and a couple of snickers from the older guys who were trying to cover it up…and then I just couldn’t help it, I threw my black sweater around her like a cape and we all bust a gut laughing…we should have tried to wait until Halloween for this surgery because I’ll be damned if this poor kid wouldn’t pass for a vampire!

We laughed until we were all crying again with poor Cassie peeking at us from under her lashes wondering what the hell she had gotten herself into hooking up with this family!

Just this little favor...

2008-09-16T15:19:00.001-04:00

We were up until 2am last night little girl.

You started to drift off in my arms after your brothers went to bed but I should have known by that little smile on your face that it wasn’t going to last. I put you down in your bed right next to mine and you giggled softly. I got into my bed and started to read thinking you might get bored and decide to sleep, but instead I started to drift off only to jump awake when you threw your blanket at me. I peeked and you laughed and it was on! We played and you thought it was hilarious when you made your bunny kiss Mommy. I KNOW I’m supposed to be training you to sleep through the night (not to mention in your own room) and I’m pretty sure getting some extra zzz’s would do wonders for me also. But…nope…this is our time, Daddy’s at work and your brothers are asleep and it’s just us.

Kisses, and snuggles, and silly belly laughs…these are the things we need now…sleep is for wusses anyway right?

Tomorrow we’re going to take you to that big building you can’t stand. Not even two, but when we pull up to that parking garage you start to fuss because you know you’re not going to like it. We’re going to take you to that building and I’m going to sit with you while they make you fall asleep, and then the doctors are going to fix your eyes. As you fall asleep I’m going to reassure you and tell you it will all be OK…

*PLEASE let me be right*

Mommy and Daddy will be in a room not very far away, but you’ll be able to feel us right by your side, willing for everything to be fine just like we were before. So hear our thoughts and feel our hearts and think of bunnies and giggles and belly laughs OK?

Now I know from your last surgery that this anesthesia thing tends to make you a little grumpy and breathing is not always at the top of your to-do list, but if you could do Mommy and Daddy just this little favor and breathe nice and deep when they take you off the vent it’ll make things go even better…

I know…since the day you were born I’ve been on you about that breathing thing…just humor me ‘K?

Do what you've gotta do...

2008-09-15T11:29:00.004-04:00

It happened yet again, a mother being judged and made to feel as if she were doing something wrong while feeding her child.

This mom was upset by her treatment and her commenters (including myself) were moved to action on her behalf. Hopefully the airline hears the message and responds appropriately. Please lend your support if you’re inclined.

What strikes me most about this is that it was another woman who harassed this mom. (and yes, it WAS harassment) Why must we always be so quick to judge and condemn one another? Why is this topic so heated on both sides? This particular conversation has remained mostly civil, and HBM has been quick to defend any woman’s choice in feeding her child. But I’ve seen these conversations devolve into mudslinging contests that boggle the mind, with one side accusing nursing mothers of needing to flaunt their breasts and expecting special treatment, and Pro-Breastfeeding mothers mentioning their disgust at seeing anyone bottlefeed their child. Why? Why can’t we just support each other in whatever it takes to keep our children fed and healthy? Seriously, I don’t have any answers here but would love some opinions.

To share my experience – I have four children, one of who was breastfed. Jonathan was born 16 years ago. I had been bottlefed, I had never seen or been exposed to (pun intended) anyone who breastfed. My child’s pediatrician, who was MY pediatrician growing up, assumed that I would bottle feed and “prescribed” my son’s formula. I simply never thought to question his assumption. Matt was born 18 month’s later and through Mommy’s groups etc I had learned a little about breastfeeding and asked our pediatrician – I was assured that there was no need to do “that” and that formula was healthier (OK – pick your jaws up off the floor!)

There was a five year span before Christopher and in that time I learned a LOT and became much more confident about being a mother. The pediatrician had been replaced, mostly because we both had a difficult time letting go of our previous relationship with him as the authority figure and couldn’t make the transition to me as a parent. Our new ped was very pro-breastfeeding and without judging my previous choices educated me as to why she felt breastfeeding was a better choice. After a rough start, we got our act together and enjoyed a wonderful nursing experience.

Cassie…well, she was a whole different experience. I was so looking forward to our nursing relationship. After she was born, I got used to the fact that my “relationship” was going to be with a pump, and boy did I try. This was the only parenting I could really take part in…this was the only way that I felt I could be her mother. Unfortunately my body was NOT clued into our new status as breastfeeding mom and after struggling to produce precious drops at a time for weeks; my body finally quit producing at all.

I never really had anyone question my choice with the first two. With Christopher I was treated to quite a few snide comments. The comments hurt and made me question myself. With Cassie, more than once I’ve received that “disgusted” look while feeding her with a bottle in public, with one woman actually confronting me and bringing me to task for being lazy and choosing the bottle. I didn’t feel the need to educate her with my struggle and disappointment, but went home and cried.

So what I’d like to say is that I support you no matter what your choice is…Do what you’ve gotta do…

Fast Forward

2008-09-13T13:17:00.006-04:00

Well that was the busiest, scariest, most intense year and a half that I’ve ever experienced and the adventure is still just starting.

Although I posted for such a short time, I miss the bogging community, and I miss the outlet that this blog provided. I’ve been (mostly) quietly reading other blogs for a few months now and find myself with a lot to say about another issue, but what to do?? Should I resume this blog that I abandoned when life got to be too much or just start anew? The answer was pretty simple – it was this situation that drew me to the blogging community – this is who I am.

So now to catch up…I’m going to give the Cliff Notes version for now to keep this from turning into a novel. I’m still working through a lot of my feelings from the past year and I’m sure I’ll expound on this in future posts. If you’re curious and have questions, or especially if you are a parent of a premature child and would like more info please feel free to ask.

When we left off, Cassie was just getting ready to leave the hospital that had served as her surrogate womb (and as her parent’s security blanket) for the past few months and was about to make her grand entrance into the “real” world.

We had a few false starts, some feeding issues to work through – the whole remembering to breathe and keeping your heart beating while eating thing kind of had her stumped for a while – but she was finally released in mid-April with supplemental oxygen as needed and a pulse-ox monitor.

We had a fairly uneventful first week and then landed in PICU after a very scary A+B episode. It was only an overnight visit and we left with a new RX for reflux.

Insert a few months of sleepless nights, a never-ending regimen of specialist appts (at least two a week), me getting back to work, and suddenly we’re in July of last year. Just deleted a big long explanation, instead I’ll insert this public service announcement:
If you are having severe chest pain and sweating up a storm, taking Maalox and yelling at everyone that it’s just heartburn is probably NOT going to make the heart attack you are in the middle of go away!
I owe my life to a wonderful friend who didn’t listen to me and forced me to let her take me to the hospital...
Follow-up with another month and a half out of work, a few more months of catching up, more specialists (for me and Cassie), my children and husband trying to come to terms with the trauma of Cassie’s birth and almost losing their mother twice, all of us coming to terms with our new normal and here we are in the present.
Whew! That was a LOT of drama in such a short space and there is so much left out…
The good news is we’re FINE, but fine means something new to us now…life is changed and it has brought and will bring new challenges and frustrations…we are changed…
But life has also brought and will bring new beauty and love and joy…
In trying to put this in words, the recent hurricanes our neighbors in the Gulf Coast are facing come to mind.
We’ve been through a huge storm and it has left destruction and devastation, it has left us open and exposed and raw, but it has also left beauty and a sense of awe. We are in the process of rebuilding, but are left with a clean slate to build on. We are saddened by the loss of our false sense of security and at the same time we are exhilarated by the freedom we now have and excited by all of the possibilities in front of us…

So what started as a way to keep friends and family updated and a way to reach out for more information on prematurity will become …what? I’m not really sure yet...but here I am inviting the whole internet along for the ride. Prematurity and its lasting effects will be a large part of it, there will certainly be venting and opinions and a little snark because well hey it is me writing, and I’m hoping that it will also be a record of this journey that we are on, a place to work through the questions and the feelings and the overwhelmingness of it all (yes, I know that’s not a word – cut a girl some slack when she’s emoting to the world at large would ya?)

The gift of time...

2007-03-18T05:48:00.001-04:00

Lots of new news this week!

Cassie had a wonderful week…she’s attempting to nipple feed at every feeding now and manages a complete feeding at least 3-4 times a day, has graduated from her isolette to a regular newborn bassinette/crib, has dropped from the 3 litre setting on her high flow cannula to only 1 litre, hangs out on only room air oxygen levels for most of the day, and =drumroll please= is stable enough for visits with her entire family in one of the family rooms when they are available!! (Note I said Cassie is stable enough…Mom might be another story altogether LOL!)

She’s had markedly fewer A+B’s this week – maybe 1-2 a day and almost always at the end of or just after a feeding. We’ve gotten to know this month’s group of doctors a little better and found one member of the team who seems to connect with us and is able to trust us to handle information. Cassie did have an “iffy” eye exam this week. The pediatric ophthalmologist checks her eyes weekly for development of the blood vessels in her retina. Because she was born before those vessels were completely formed, she’s at risk for a condition called ROP – in a nutshell, the extra oxygen she requires can cause the blood vessels in her eyes to grow irregularly and eventually start to pull the retina away from the lining of the eye. In Cassie’s eyes, she passed the first two stages of development that they are looking for, but has started to show some irregularity. It’s very slight right now and may resolve itself; if it worsens she could need laser surgery and may have some vision problems. The outcomes are pretty much across the board and range from no lasting effects to blindness. It’s way too early to try to anticipate where this is going to go, but I really appreciated the time the doc took to explain everything to me (diagrams and all!) and his suggestions for me to find further information.

It was a really nice conversation and I learned a few things about how I can communicate better with Cassie’s doctors. First, I asked him to “teach” me what he was talking about. Then, when I started to get a little overwhelmed I told him and asked him to give me a second to process. Second, when he was done explaining everything and asked if I had any questions, I told him that I “understood” everything he explained, but wanted to think about it a little and asked if I could call him later. We set a time for the follow-up call (early next week) and then actually talked a few minutes about how well that went. I thanked him for the time he spent teaching me and it seemed like he appreciated me letting him know how much I was taking in and asking for the follow-up after I’d had time to think. We both sort of expressed that we wished it happened that way every time. I’m starting to realize that my demeanor and how I approach Cassie’s docs is going to make a huge difference in my family’s experience. I’m not sure exactly how I feel about that. I think that every parent in that NICU deserves the time and willingness to educate that I received from this doc, but this was the same doc who two weeks ago walked in, announced himself, took one look at my tear stained face (tough day) and told me he couldn’t proceed with me at bedside and was not available for questions later. Am I somehow more deserving of time if I’m calm and collected and dressed professionally? I don’t really think so, but at the same time these docs have work to do and I would have been a lot less receptive to him on the first day. No real answers here from me…it just seems like there is a missing puzzle piece in the NICU picture that would make the experience much easier for families AND make the doctors’ job much simpler…someone to act as a liaison between the parents and the docs. The nurses do this to some extent, but you can be assigned a different one every day. If you’re lucky enough you have a primary nurse. We have two who opt for Cassie’s assignment whenever they are in unless they are needed elsewhere, and that has helped immensely, but this doesn’t always happen for everyone.

Back to the topic at hand, we had a wonderful full family visit today and what would a family occasion be without some pics!

It was so very nice and I didn’t really realize until after just how needed it was. Not only did we need some quiet, almost normal time as a family, I think we also needed some practice at it. I was incredibly nervous. You can see from the pictures that I never made it quite more than six inches away from Cassie the whole time. We also needed to know that we could handle an urgent situation as a family without falling apart and little Miss Cassie was perfectly willing to supply one! She had a very dramatic “brady” while we were alone with her, requiring lots of stimulation, extra oxygen, and the calmest page to the desk to get her nurse back in. I still don’t know how I managed that “Could you please send “B” to the family room now” with just the slightest hint of panic in that “now”. I've already mentioned that "brady's" are sort of my downfall - they flat out scare me - but I was trying so hard not to scare the boys! Mike was right there listening to what I needed, and adjusting her oxygen, and the boys were appropriately concerned, but didn’t panic and stepped aside while Mike and I did what we needed to do.
Ten seconds later (the LONGEST ten seconds of my life!) and our nurse was there, Cassie was already pinking up and moving and responding, and after a quick check on Cassie, our nurse only really needed to talk about what happened and how we responded and explained things to the boys. Two minutes later, Cassie was happily enjoying being held by Matthew. It was nice to know that we could recognize and handle what happened, but I’m so thrilled that “B” had the forethought to suggest the family visits. The “practice” family time will help us to work through a few of the bugs and strains while we still have “back-up” and despite the few minutes of drama, we really NEEDED that time to be just us. I might not have left her side for a second, but watching her start to respond to her brother’s and her Auntie, feeding her and just talking like we might be in our own living room, was so relaxing that I might have actually forgotten to be on edge for a few minutes!

So I guess this week's theme is time...the precious time our nurse "B' reserved for us to be a family, the time Cassie's ophthamologist took out of his day to work with me and help me understand, how quickly time seems to be passing as Cassie prepares to come home, and how 10 seconds can seem like forever and then disappear as if they were nothing at all when you take the time to relax and enjoy the moment.

Milestones and "Easy Answers"

2007-03-10T08:31:00.001-05:00

Wow, what a difference a couple of weeks can make! Things are moving along quick at this stage of the game.

Cassie continues to reach milestones – she reached 3lbs 9oz this morning – that means that she has tripled her birth weight! She’s also started to bottle feed this week and is looking to be a pro…only one feeding a day right now, but we’ll build on that. The most encouraging part is that as she’s feeding she paces herself and remembers to breathe. Her saturation levels stayed high for the majority of her feeding and when she does dip down a little she self-recovers by taking a few deep breaths. She’s also awake for longer periods now…a little thing, but it’s just SO nice when she spends a little time just looking at me and it’s so encouraging to see her start to become more interested in what is happening around her.

Over the past couple of days she has backtracked a little and is experiencing more A+B’s (Apnea and Bradycardia episodes) than is normal for her. This is when she stops breathing for short periods of time and her heart rate drops and could be caused by a couple of things. It seems to happen fairly often after her feedings, bottle or tube, and that could point to her experiencing reflux. But she also had her first immunizations two days ago and it seems that it’s not uncommon for pre-term, especially low or very low birth weight, infants to experience more cardio-respiratory episodes for 48-72 hours after vaccinations. So we’ll document and wait and see…

That brings me to the “Easy Answers” part of my post. Because it’s a new month we have a new team of doctors and it takes time for the new docs to get to know us parents and for us to get to know and trust them. When it came time to authorize the immunizations I had a few questions. I don’t have any real objections to vaccinations per se but I wanted to make sure that there were no increased risks due to Cassie’s prematurity. I “thought” this was going to be a simple discussion. Let’s face it; I really just wanted to reassure myself that they had considered Cassie’s prematurity when ordering the vaccinations. The first night I requested more information, I was given the standard info sheets handed out with every immunization and an intern was paged to come and talk to me. I waited patiently for sign-out rounds to finish, then waited a while longer while the whole crew went to their room to talk, then waited a little less patiently when a group of them left the NICU and some stayed in their room, and finally I left close to an hour after the page when the group that left came back in carrying their dinners and the other group left for home. I let the nurse know that I’d authorize the vaccinations as soon as someone had the time to talk to me, but that I couldn’t continue to wait while they finished their dinner because my other children were at home and waiting for their dinner. The next day, one of the pediatric interns was waiting to talk to me when I entered. I asked my questions and was reassured that the AAP recommended immunizations at two months regardless of gestational age at birth and that there were NO added risks associated with prematurity. So Cassie got her shots, experienced a slight fever, was treated with Tylenol and that was that.

Until last night…Cassie bradyied while I was holding her last night – her heart rate dropped from 160 to 50 and it took quite a bit of stimulation to “bring her back”. She’s definitely had an increase in these episodes over the past couple of days. Now, I’m pretty good at handling desats, but I have a very hard time when she brady’s. Whenever her heart rate drops it just scares the hell out of me. I talked with the nurse and pedi-intern about it. We discussed that it could be reflux, or that she’s outgrowing her dose of caffeine which treats her apnea. Both of these things “could” be the answer, but when I came home and started to look for more information I found three separate studies that indicated that there is a higher incidence of A+B episodes in premature infants after receiving immunizations. All three studies seem to agree that the episodes were not clinically significant, and recommended that immunizations still be given at two months chronological age, but that they be followed by cardio-respiratory monitoring in a hospital setting. Since the bottom line is still that immunizations be given at two months regardless of gestational age then what the pedi-intern told me was appropriate right? NO! What I needed to be told is that there might be an increase in A+B’s but that they still recommended the vaccinations and why. It might not make a difference in the outcome, and certainly might have required more time be spent educating me, especially because mentioning brady’s would have set off my “Mommy Alarm”. But I would have had complete information, I would have been as ready as possible for seeing more A+B’s, and I would have had complete trust that my child’s docs shared all the information with me.

Now, the situation is entirely different. Cassie did get her immunizations but something valuable has been lost in the process. Her increased cardio-respiratory events could be for any number of reasons and only time will tell if we ever know for sure at all. In fact, it’s pretty likely that they are due to reflux considering the usual timing after feedings. The studies I found might even be flawed, I’m perfectly well aware that I’m just not educated enough on the subject to know for sure. I even understand to a certain degree why I was given the “easy answer” – immunizations are one of the “hot” topics between parents and docs. But let’s compare this to the steroid treatment discussion with the previous team of doctors. In that discussion, Cassie’s doctor addressed my concerns, shared with me all of the information he had available, explained the possible complications and then explained why he still felt they were the best course of treatment. He even acknowledged that time and follow-up may prove him wrong. He took the time to educate me and although I still worry about developmental problems later on I trust that we all did the best we could with the information that was available. Did it take longer to get me on the same page? Certainly, but it developed a trusting relationship.

That didn’t happen this time around…this post could just as easily be titled “The making of a difficult patient”.

Cry Baby...

2007-03-03T13:56:00.001-05:00

Happy, sad, angry, or in awe it really doesn't matter - I cry. Long distance phone commercials, songs on the radio, a beautiful smile from my kids, in the middle of a heated argument...you've got it...I cry.

It's not a nice delicate "tear sliding down the face" cry either. When I cry, I'm a big sobbing, running nose mess! To make matters worse, I'm a fair-skinned redhead - so not only do I cry, but the whole world knows about it just by looking at my blotchy skin and red nose for the next few hours. And have you ever tried to be taken seriously in an argument when you're crying? I think my all time favorite movie line is Meg Ryan yelling "It's just stress, @ssh&*$!" in "Courage Under Fire"

So I've always tried to control my crying. I've learned ways to stop the tears as soon as I feel them building up. I DON'T cry in public! I've probably spent hours already walking up and down the hallway outside NICU reading the bulletin boards because I don't want to cry in front of the nurses and doctors.

Just yesterday, I had a headache. It came on super quick while I was in a co-workers office. We were chatting and suddenly I felt as if I had been hit upside the head with a sledgehammer. I could tell my co-worker knew something was wrong - he was giving me that "You OK?" look, but I was determined NOT to let anything be wrong and certainly there would be no tears! Fifteen minutes later, things were so bad that a friend was giving me a ride home and I barely made it to the stairwell when I started sobbing - it just hurt that bad. We ran into another friendly face in the stairwell who was asking me about Cassie and wanted to know if I was OK...all I can remember telling him was that I hate to cry in front of people "So you didn't see this right?!?"

Turns out the headache was a reaction to changes in my blood pressure meds this week. Sorry to everyone I made nervous! It got me thinking though about crying. I had just been talking earlier that morning about Cassie crying and how thrilled I was to hear her and in my post headache fog different scenes started to re-play in my mind.

***We had just been rushed to surgery for my C-section after a very brief meeting with the neonatologist. She had explained that they would "try" to resuscitate Cassie, but that they didn't even know if she was going to be big enough for the tubes. I'd been given my spinal and the drapes were up, the anesthesiologist kept talking to me but all I wanted was for him to shut up so that I could hear what was going on...then all of the sudden clear as day I heard the best five words ever..."Look! She's trying to cry!" I don't remember a lot of what happened for the next few hours but I do remember thinking "Good for you Sweetheart!"

***Day two or three - I'm still in shock and can't function for much more than sitting by Cassie's bedside having this long internal conversation with her. I notice that she's crying. I can't hear her of course because she's intubated and that makes me sad, but it's almost funny the way she starts when certain people are talking near her isolette. Yep, after a few more times I'm convinced, she really does start to cry everytime her attending and one of the interns are near her and she REALLY gets mad when she's put on her back. "Good for you kiddo - tell us all about it!'

***Cassie's been off the ventilator for a day or so now and I'm holding her skin to skin. I can't see her face, but I can feel her moving around and starting to fuss a little. I'm hearing this noise though, almost like when one of the neighborhood cats got into the attic and had kittens, just a soft little mewing sound - and then I realized - I was hearing my daughter's voice for the first time! "Thanks so much for sharing that with Mommy darling!"

***I'm taking Cassie's temp on Thursday and she's mad about it - and boy did she let us know! She was really yelling, crying, and kicking up one heck of a fuss. I stopped what I was doing for a sec and just looked at her. The nurse must have thought I was nervous about her being upset because she came over to reassure me until she saw the ear-splitting grin on my face along with the tears falling down my face - "That's it sweetie - you keep fighting and letting the whole world know about it!"

I think this little girl is going to be teaching me a heck of a lot more than I'm going to be able to teach her....

So you go ahead and cry, baby....maybe Mommy will too

Cassie News...

2007-02-25T20:23:00.001-05:00

Well Cassie and I survived my first week back to work full-time! Alright, alright...there never really was a question about Cassie being able to handle it, but with me it was pretty touch and go there for awhile!

Overall, she's had a great week. She's still on the high flow cannula, but does have "spells" where her pulse/ox levels drop - dramatically at times! Sometimes there's an obvious reason like she's wormed her little hand in and pulled out the cannula or she's just spit up after her feeding. Usually though it's because she's not always breathing effectively yet. Right now, the "cure" we're looking for is just time and growth - hopefully as she gets bigger this will resolve. In the meantime, she's gotten pretty good at keeping Mom on her toes with those alarms going off. Cassie continues to tolerate her feedings pretty well and she's gaining weight. A little too much though, it looks like she's retaining fluids again so we'll be keeping an eye on that this week, looking for lots of wet diapers etc...

On the amusing side - I do NOT remember being this excited over diapers with the other guys! I seem to remember that it was a dreadful chore and that Mike and I used to expend quite a bit of our brain power devising ways to trick each other into changing them. You should see us now! Not only is every diaper a cause for celebration but we actually argue a little over who "gets" to do it because it's another opportunity to interact with Cassie!

While I'm talking about that I have to send an apology to any of my co-workers who are reading. If you came anywhere near my desk or tried to talk to me about something right before 3pm this week...well, I probably bit your head off and I am so sorry! I won't always be a total b!+%# about leaving right on time, but right now I need to get to the hospital for Cassie's 3:30 care. Even though I do get to hold her for quite a while each day, she is usually sleeping, so the only time I really get to see her awake is during her care when I take her temp and change her diaper right before her feeding. After that, it's right back to sleep for her and the opportunity doesn't come again for another three hours! As she gets older and grows she'll start to be awake more and more and I won't be quite so desperate to be out the door at all costs! I know you all understand...but I still feel like a total jerk for being so snippy - sorry!

NICU Don'ts

2007-02-25T06:22:00.001-05:00

First a couple of disclaimers:

99% of the parents and visitors I have met in the last 8 weeks in our NICU have been wonderful - there are a couple that I already consider friends and at least one whose kindness has saved my sanity on more than one occasion.
I'm very well aware that this is a very difficult time for these people and that I'm not seeing them at their best. In fact, I've made more than a couple of boneheaded moves and comments myself...one of my first was absolutely insisting to a nurse that we begin breastfeeding as soon as possible. Umm Mom - did you not notice the ventilator hooked up to your daughter, you know the one that is BREATHING for her?

But this is my blog and I'll rant if I need to...

So if you are visiting a NICU for whatever reason - parent, grandparent, friends baby - here are a few things to avoid if you can.

"Did you see that tiny baby? It's really too bad, but you know all those really tiny kids had "druggie" moms..." might not be appropriate conversation in the NICU waiting room. Try to save your pearls of wisdom for a more private time.
This is not an exhibit and the other babies in the unit are not on display. Try to avoid "peeking" under the blankets that cover their isolettes. While you're at it Grandma, walking over to a Mom in a rocking chair, leaning over her shoulder and calling to your husband at the top of your lungs "Honey! Come here! You've got to see how tiny this one is!" is not only bad form...if Mom wasn't holding the baby it might have gotten you slapped!
All those warnings about germs and colds...they're serious! If you are sitting in the NICU waiting room, hacking away, complaining that they won't let you in to see your grandchild and that the policy is silly because everyone knows the only way to build up antibodies is to be exposed to germs - please don't be offended when I just get up and walk away...you see, if I get sick thanks to your sharing I can't see my baby. I know we're never going to convince you but I'll try anyway - my child's lungs are immature, if she gets exposed to your germs and gets sick she could die! Make it easy on everyone and stay home until you feel better and are not contagious.
Looking at me in the scrub room and then commenting to your buddy about how lucky he is to be spending time with all these nursing moms is just....oh never mind it's hopeless!
I know it crowded in there and you really need to get that picture, but moving that pesky ventilator attached to my daughter so you can get a better shot of your little sweetpea is NOT an option!

"The Discussion" and how it's helped this Mom...

2007-02-24T18:37:00.001-05:00

So my little one was 6 weeks old and I'd been trying to find out as much as I could about what's in store for us...then I stumbled across Neonatal Docs blog, linked from there to The Preemie Experiment, Dream Mom, Tales from the Womb and then some...in fact thanks to all these people I've been reading for a week straight! I used to be a little ashamed of my on-line time - but not anymore - I think over the past week I have read some of the most valuable discussions of my life.

You see, I was scared...Cassie was born at 25 weeks. She was 1lb 3ozs at birth, had a Grade II IVH at one week, and was on a vent for six weeks. It was way too early to start talking to her docs about her specific prognosis, but I wanted some information about how other children born in similar situations had fared. Much of what I found was very reassuring. It seemed that kids in Cassie's situation really just needed to finish growing in NICU, they'd probably be a little delayed for awhile, but would catch up by age two. GREAT!

But there was still this scared voice inside my head...and we'd have this discussion:

Voice - "What about that IVH, was her brain damaged?"
Me - "Stop being so negative"
Voice - "She's been on the vent for so long, isn't that causing damage?"
Me - "Thoughts like that aren't helpful, you need to be strong and optimistic now to get her through this"
Voice - "Is the whole NICU experience (lights, noise, pain) going to have any lasting effects?"
Me - "Would you just SHUT UP already - I DON'T WANT TO THINK ABOUT THIS!!!"

But there it was...the questions had been asked and I needed to keep digging. So I kept looking and ended up reading Outcomes on Neonatal Docs blog. Wait a minute - here were people saying that some of these kids have real problems! Some of them were actually discussing the ethics of resucitating younger and younger babies...AND they were discussing the lack of good studies that followed the outcomes of these babies past two or three years of age! Well now I was more than scared and I really wanted to stop reading - but that little voice popped in again and reminded me that I'd never be able to forgive myself if I didn't try to learn as much as I could.

So now I'd like to thank ALL of the participants of these discussions...you've helped at least one Mom immensely and there are probably many more like me. I haven't posted comments on these blogs because this is all just too new for me and I really don't feel like I could participate intelligently (yet) but I would like to say how valuable the discussion is for parents like me and how much I appreciate the participants for being willing to share their thoughts and work on the topic.

To the professionsals: You've helped to not only reassure me that there are docs and nurses out there who are willing to ask themselves some pretty tough questions, you've also helped me to see my daughters docs and nurses in a new light. I still admire them, but I'm no longer scared of them and intimidated by their knowledge and expertise. I feel like I can talk to them now and that can only help my daughter.

To the parents: I've seen many of you criticised as "bitter" and just upset about your child's outcome. You've been accused of trying to scare parents like myself and destroy our hope. PLEASE don't ever let this criticism slow you down or "shut you up". Just like that voice I kept hearing, I need to hear your voices and experiences. You have not, and could not, destroy my hopes for my daughter. Hope is frankly the only thing that keeps me getting up each morning. What you've done is helped to validate my own concerns instead of making me feel as if I were betraying her to be worried. You've saved me from being blind-sided by a diagnosis later on when I thought all she had to do was "catch up". Most importantly, you've helped me become a stronger advocate for my daughter now. As noted in my last post, I did agree to a short dose of steroids when my daughter was having trouble getting off the vent, but I at least feel that I made a partially educated decision and felt like a participant in the discussion with my daughters docs instead of just a by-stander being told how she was going to be treated.

Once again, my thanks to all of you...I've got a long journey ahead of me and it helps to know that all of you are already out there ahead of me helping to pave the road...

Latest Update

2007-02-24T17:24:00.001-05:00

I've been catching up with some of you at work and on the phone but haven't really gotten a chance to let everyone know how Cassie's been progressing...some of it is just too detailed for a quick "How's she doing?" and some of it is just "too much" for me to actually talk about...writing is easier:)

The past couple of weeks have been a little busy... Since I last emailed, Cassie started to have some real trouble with the vent - it was causing a lot of fluid build up and inflammation which in turn caused us to need to increase her settings, which caused MORE fluid and inflammation....after a long talk about side effects etc, we decided to try a quick low dose of steroids to help mature her lungs a little more. It was a really tough call...steroid treatments come with risks of developmental delays, but remaining on the vent for extended periods also can cause developmental problems. I'm so grateful for the wonderful docs we have ...I'd done quite a bit of research when we saw how the vent was becoming self-defeating and if they had downplayed or dismissed the risks of steriods I would have completely lost faith and trust in them. Instead, Cassie's doc spent a LOT of time with us explaining what our treatment options were and ALL of the risks and worked with us to choose the shortest, lowest dose we could. Cassie still had a lot of work to do on her own, but the steroids gave her just enough support get off the ventilator and graduate to to a device called CPAP (provides a steady stream of air to "remind" her to breathe rather than breathing for her).

Because of the vent being gone and her being big enough to regulate her temp a little better she's also allowed to wear clothes now - seems like such a silly thing to be excited about considering all the serious medical stuff going on all the time, but it really made such a difference for me. I was talking with another Mom who's baby was born around the same age and she summed it up pretty well "It's almost like she's a REAL baby now, right?" She was just so exposed and defenseless before and honestly sometimes just seeing her there with all the equipment and tubes and wires, with alarms going off left and right...it was like a science experiment gone horribly wrong. The clothes just seem to protect her and help me to see past all the medical "stuff" and concentrate on my sweet baby. Here she is with her "big girl" clothes and CPAP holding on to Daddy's hand!

This morning we walked in and Cassie had another surprise for us - not content with the CPAP, she moved right on up to a high flow cannula...same basic principle except it has tiny little prongs that barely enter her nose which enables her to move her little head freely now! (and are much more comfortable!!) We're not sure if she'll be able to hold her own on this yet, but she is on very low flow setting and just a smidge above room air on her oxygen, so there's lots of room to adjust if we need to.

It felt weird to hold her and be able to move her around a little today, our nurse had to physically loosen up my shoulders and prove to me that I could move freely without hurting her :) She also placed my chair so that I couldn't see Cassie's monitors... she didn't tell me until afterwards that she did this on purpose - she had noticed that I was tending to live and breathe by those things and thought I needed a break to just enjoy Cassie. She must have been right because I positively had a panic attack when I realized I couldn't see them and didn't know what Cassie's "numbers" were!! While it's helpful to be able to anticipate when Cassie is having trouble, I was really obsessing on it...there's going to be plenty of times I need to be her nurse as well as her Mommy, but thanks to a wonderfully attentive nurse today wasn't one of those days! Here's a pic of Cassie today, out of her isolette and enjoying her freedom!

Lot's of people ask about how the boys are handling things and I'm going to take a second to brag LOL! I am so proud of these guys - this whole situation is just so hard and scary for them and they just keep trying to make it OK and seem to be able to find joy in the simplest things. I've included a couple of pictures below of "Kids Club" this Tuesday. You'd think that with fourteen babies, all of their equipment, 5-7 nurses, and the people who were visting all in a room just a little bigger than your average living room that it would be impossible for to have a family moment and relax. Yet, the boys come down from their get together, bring their art projects (this week a Valentine's card for their sister), Christopher keeps a book next to Cassie's isolette that he reads a little bit from each week and they settle right in for some family time - talking to their sister about their week, making plans for her as she gets older...there's laughter over the goofiest things...the latest is the idea for a t-shirt for Cassie that says "Half Baked!" (Let's NOT speculate on who they inherited that warped sense of humor from!) There have been tears, smiles, and questions galore, but more than anything else they really get that it doesn't matter where we are as long as we're together for those few short minutes each week...I'm a lucky woman to have such wonderful teachers!

This by the way is our first family picture! Once again thanks to an espescially wonderful nurse who saw us listening to Christopher's story and ran to get the camera! The funny thing is...she wasn't even our nurse and we'd never met her - she just saw a moment she knew would mean a lot to me and had to get it on film.

In case you haven't noticed from my emails - these NICU nurses are a VERY special breed of people. There was the nurse who heard the boys were coming for their first visit and tore the whole unit apart looking for a shirt that would cover Cassie and not interfere with her equipment so the boys wouldn't be scared, pictures taken by nurses I've never even met of Cassie doing something cute that I find left for me, Michael's "football buddy" who takes the time to argue the merits of the Patriots vs the Cowboys even though I can tell she knows about as much about football as I do, the way EVERY nurse in the room stopped one day to correct me when I told a student nurse that Cassie was so premature because my body couldn't take care of her. Here's a hint...NEVER say it's your fault in NICU - the nurses will NOT go back to their normal routine until you repeat after them "It's not MY fault" until you believe it! Also...never get between a nurse and "pretty" blankets...they HATE those white hospital blankets and will rip freshly laundered "pretty" blankets right out of your hands to change the bed right away! I've seen these ladies and men send lab tech's packing with instructions to come back when it was time for the babies care so that their sleep is not disturbed and I've seen nurses working their hearts out with tears pouring down their face when a baby has a setback. I've had "moments" with a couple of nurses, and even then haven't found one who wasn't willing to listen and learn from what I was trying to say. I wouldn't have made it through the last six weeks without these wonderful men and women...if you ever meet someone who tells you they are a NICU nurse anywhere - give them a hug and say thanks for me!

Well, if you're still with me, sorry this has gone on so long...I really need to take up blogging or writing a journal to spare everyone the long emails LOL! Thanks so much for all your love and support!

2007-02-24T17:14:00.001-05:00

So here it is...I promised (threatened was more like it) to take up blogging when my last email update on Cassie's progress went on and on for three pages!

In my upcoming posts I'll try to share with all of you a little of our life and Cassie's story. Hopefully I'll be able to keep you all updated on her progress and at the same time try to make sense of and work through this new adventure in our lives...