Monday, November 30, 2009

Thanks - Giving

This year we reinvented Thanksgiving.

Every year since I was about 5 years old my whole family has traveled to Alabama to spend the holidays with my mom's family. Everyone congregates at my grandparents home and each year our event has gotten bigger. New grandchildren have arrived, new in-laws have arrived and now new great grandchildren have arrived. We are pushing close to 40 people when we all get together. Lots of people to get into my grandparents house! Of course only a few of us stay at the house. Everyone else joins in for lunch and dinner.

Of course this year was different for me.

When we first learned of Carolena's diagnoses one of my first questions was, "can we travel?" The answer was a resounding NO from all the doctors. Ugh. Oh well. We have to do what is best for little C.

When we discovered that C was actually doing so much better on her own then anyone really anticipated, I was getting a little hopeful that we might be able to make the trip.

The answer from all the doctors..."um, are you crazy?...NO."

Well, I had to ask.

So, this year we reinvented Thanksgiving and stayed home.

My mom even stayed with us this year. No small sacrifice for her as she does not like to miss out seeing her parents (and sisters and brothers and nieces and nephews, etc.) Mom and I did something even more unprecedented. She called a local caterer and we had our Thanksgiving dinner made for us. Mama picked up all the food (including a whole turkey) at 2pm on Wednesday. Wow. Nothing like not having to cook. Which, by the way we did not completely escape. Mama still did make 2 pumpkin pies and I did make another whole turkey. Kevin got the turkey from work. Which in actuality turned out well since we brought the turkey with us to his parents house the next day. With all the sadness (me) in the changes we did have lots of new experiences to celebrate. Our good friend Megan and her daughter joined us for Thanksgiving dinner. We got to spend time with Kevin's family this year. And the boys had a blast staying at Kevin's parents house with all the cousins. So, even though our usual changed, the changes were pretty good.

Sunday we all went to get Christmas trees. Yes, I said trees. Plural. The boys got to pick their own small tree for their room this year. Kevin is such a sucker. However, the boys are just so excited to have their own kids tree and honestly me too. I do not have enough room on our one tree to put all our Christmas ornaments...such a lovely problem to have. Kyle lobbied hard to have the tree put in their bedroom. Todd, well, he was not keen on the idea. I guess just like the toothfairy, Todd has a problem with people coming into his room at night when he is sleeping. Quirky to say the least. But he has been telling us lately he is afraid of the dark and monsters in his in all reality I guess not too weird to be freaked out about the thought of some big adult you do not know and cannot see messing around in your bedroom when you are sleeping.

Oh...and hallleluah....Egg Nog milkshakes from Stake-n-Shake. Is there anything more yummy? I had one Saturday and it made me so happy I just had to get one Sunday after we got our trees. If you have not had one yet, you seriously need to get one. Unless of course you just hate eggnog.

And on to Carolena. She is still doing well. Her heart cath did show that she will need to have surgery to correct her pulmonary veins prior to doing her Glen. We were really, really, really hoping the doctors could correct the veins at the same time as doing the Glen so she would only have to do one open heart surgery. However, with the pressures in her heart, lungs and veins right now, doing the two procedures is way too risky. She will have the pulmonary vein surgery on December 9 and if all goes well she will be looking at having her Glen about 3 months later.

Just so you all know, Kevin and I try really hard to put on a brave face. We talk about C and her issues and surgeries very matter of fact. In reality we are terrified. I get so caught up in doing everyday things with being at home, especially when we do not have to see any doctors for a couple weeks that when it all hits me again I am leveled just the same as when I originally found out. I AM grateful that she is where she is and that we are home. But, this does not take away from the fact that C is a sick baby and she needs surgery. She needs the same surgeries as kids just like her who are not doing as well. Kids like her who are still in the hospital. And guess what, she has the same death/survival percents as all those other kids too. In some ways, our life right now is harder. I find myself forgetting to worry (which is actually good) but I also get caught in thinking that our life is normal. Which of course it is not. We struggle and fight and push through and what is on the other side...nothing...there are no guarantees, there is no happy ending, there is no miracle. Only more of the same. THERE IS NO CURE. So, now we gear up for C's first open heart surgery on December 9. It very well could be the last time we get to hold her, kiss her, hear her talk to us, see her smile at us. There are soooo many risks each time she goes on bypass. The surgeon will stop her heart. I am terrified.

Friday, November 20, 2009

Snippets from Today

On the way home from school:

Kyle: Mama, white cells fight and red cells help your body.

After dinner while eating dessert:
Me: Kyle, how is that Eggnog ice cream with chocolate syrup?
Kyle: (mouth full of ice cream) Shakes his head and gives me a thumbs up.
Also after dinner while eating dessert:
Kyle: (with eggnog ice cream and chocolate syrup) Look Todd, mine is a Sundae.
Todd: Kyle, mine is a Monday.

Wednesday, November 18, 2009

C is 3 Months Old

Carolena is officially 3 months old November 19 (13 weeks and 1 day). We are still in the time conundrum where her actual age in weeks is still greater than her age by date. However, I am happy to be going by her age by date at this point because it feels like we get to cheat a little bit. Every measurement is taken by her date age, so things like her weight are showing to be a little higher (yea!!) This also means her first open heart surgery will not take place until her date age of December 19 when she is technically 4 months old.

While I am in no hurry for her to undergo such extensive surgery, I am hoping that we can get this surgery done sooner rather than later. Waiting really sucks. Especially when there is no choice. We HAVE to do surgery. Right now Carolena is stable. Her oxygen saturation levels are still high, she is still breathing on her own very well with a normal respiration rate, her heart function is stable and normal for her. She is gaining weight. Slowly. Very, very, slowly...but the gain is still there. As long as she gains an appropriate amount then the doctors are not overly concerned with her development. Eating is critical. Not only as an indicator for her heart function but also for her growing organs and her brain. She NEEDS all this food (and calories) whether she thinks so or not. Honestly, this child is far too young to be worrying about maintaining her figure by staying skinny. Don't let her sweet little chipmunk cheeks fool you...she does not have the typical baby fat rolls anywhere else on her frame.

At this point Carolena is still fighting eating. I am still skeptical that this is a JUST a reflux issue. But, I do really, really want to believe it is JUST reflux because the alternatives are just too scary to think about. We now have her on Prevacid. She seems to be doing a little better. Each time we think we are turning the corner she starts fighting eating again. Sometimes I really think she is doing this to be know already testing the boundaries on how much she can get away with before getting into trouble. We are really crossing our fingers that the Prevacid will work. We have had two different families who went through these same reflux issues with their babies tell us that the Prevacid is what finally worked for their little ones. Please PRAY for us that this is the case for Carolena as well. We walk a very fine line with her. The doctors WILL NOT hesitate to hospitalize her and surgically place a feeding tube if she does not eat. We are not allowed the option of seeing how this works out. Her heart does not function efficiently for her body, she burns more calories than a normal baby...therefore, if she does not eat, or eat enough, the doctors will get the calories in her somehow. As I said before, it is critical.

Having said all that she is weighing in at 10 pounds. So, not horrible. But the effort it takes to get her to eat is incredible.

Now on to the fun stuff...what C is doing at 3 months old:

- She LOVES her hands. She plays with them and CHEWS on them all the time.
- She is definitely teething (see above).
- She is getting interested in toys.
- She smiles first thing in the morning when she wakes up and sees me.
- Her smiles are so big and transform her whole face.
- She is "talking" up a storm, she can have a whole conversation of coos, oohhs, aahhs and gurrs.
- She can grasp and hold her rattle when we put it in her palm.
- She is really trying to sit up on her own.
- She "stands" when you hold her up on your lap.
- She chews on her bottles and pacifiers.
- She is starting to laugh.
- She loves her big brothers and loves when they hold her or play with her.
- Todd makes her laugh.
- She sleeps very little during the day, preferring several short cap naps.
- She sleeps very well at night (with the exception of us shoving a bottle in her mouth).
- She still loves to sleep in our bed.
- She still loves her bath.
- She likes to be outside and will calm down if fussy (just like her brothers!)
- She is very similar to Kyle in sleep habits and eating.
- She is very similar to Todd in temperament.
- She does not cry for no reason.
- She cries when there is a problem...dirty diaper, making her eat, pain from reflux.
- She is pretty easy to console.
- She does consistently take a pacifier...hoooooray!
- She likes her bouncy seat and swing equally well.
- She holds her head up and steady all by herself.
- She is SUPER strong and VERY alert.
- She loves to watch all the stuff going on around her.
- She does not like to be left alone in a room or left out of family time.
- She still stares at the ceiling with the biggest smile and now she "talks" and "laughs" too...we think she is having some fun with her angels.
- She is ticklish but gives you a very bored, DIVA look if you try and tickle her.
- Other than when getting her bath, she HATES to be naked.
- She has still only been in the hospital twice and both times she came home just fine.

We know how special C is and we are so VERY grateful she looks SO good and is doing so well. We have been at home all this time. We have been able to have a relatively normal life. We are being given all that we can truly ask for.

Thursday, November 5, 2009


I have this blog for me. I write what I want because I can. I try very hard to not pass judgment on others because I am not God and God is the only one who can impose judgment. I do not appreciate sanctimonious, holier than thou, self righteous people passing judgment on what I believe.

Last I checked I live in a country that not only allows but celebrates religious freedom. So many citizens have lost their lives protecting our freedoms, including our freedom to have whatever relationship with God we choose to have. Should you feel compelled to leave a comment on any post I write dealing with MY beliefs, please do so in a manner that tells me what YOU believe and why. Do not leave me comments about how I am wrong and I should change my mind.

Now that I have that out of the way, I have a few more things that I have been thinking of.

1. If God already knows and sanctions how everything is going to turn out, what exactly is the point of praying. Is God going to change His mind simply because I pray for a more favorable outcome for me? Does a whole group of people praying have more weight than a single person praying? I choose to believe that God does not have everything all mapped out yet...that praying does make a difference.

2. I believe that Jesus would be the very first person to say that He is not perfect. He would say He could have worshiped more, studied more, helped more. I do not think Jesus ever intended for us to think he was "perfect." I think all the trials He went through were to show us that even though we are not "perfect" we still must have faith that God exists and that we have a chance of ever lasting life in heaven.

3. Even though my belief that God makes mistakes runs counter to every popular religious belief, I choose to hold on to my thought that God is fallible. I have problems thinking that God is punishing me for some misdeed I have done. From all that I have seen if God was the punishing sort then all the "bad" people would have long since been struck down.

4. I also choose to believe that things do happen for a reason, that there is not total randomness at work. I think God sees all and is willing but not able to keep all evils things from happening.

5. I am no different (better or worse) than any other mother who has a child with health issues. I do not have the market on being angry this happened to me. I am allowed to feel as I do. There will be people who are in worse situations than me, saying what is she complaining about, look at my problems. But there will also be people who look at me and my child and think, thank goodness that is not me. I think everyone has the right to feel what they feel and not have other people tell them to suck it up it could be worse.

6. I think it is very easy for someone who has never had their innocence shattered or their lives rocked by traumatic events to pass judgment on those lives have been touched by tragedy and who do question God and their beliefs. In my experience the people who are spouting sanctimonious crap are people who have lived nice, normal, boring lives where nothing bad (but nothing really good) has happened. I think it is very similar to the person who believes that a murderer can be saved and should not face the death penalty until that person's loved one is terrorized by the murderer. It is amazing to me how quickly that person is willing to see that same murderer they thought should be saved now be put to death.

7. I think God wants us to question our faith and beliefs. We can never grow in our faith if we are blindly lead around like sheep never questioning why things happen. God gives us free will. I think he intends for us to use our free will to find the right relationship with God for each of us.

Wednesday, November 4, 2009

God Makes Mistakes

I generally refrain from posting anything on here about my relationship with God or my struggles with faith. However, I have had a light bulb moment recently and I really wanted to write about the truth I am just coming to realize.

God makes mistakes.

Now, stay with me here. I know this is not what we (especially me in the religion I was raised in) are taught to believe. But, this idea is one I have been playing around with for a while.

For a little background, I have always had issues with death. I guess mostly the finality of it all. Death is permanent and so devastating to the ones left behind. Losing Todd and then my dad so close together just seemed unfathomable to me. I could not even find my way up much less understand why God allowed them to die. I also have issues with what I perceive as what is fair and just. I always want things to be fair and justice served. I have suffered so much already and I play by all the rules. I am a good person, I do what I think God would want me to do so why do I have the child with severe heart defects? Should not the couple who flaunts all the rules and what is right pay the price? Why would the couple who does not even want a child, who is selfish in their very being be rewarded with a perfectly health child? But in reality all that thought process has done for me is make me miserable, self righteous and judgmental.

Yet, still I question if it is fair for a 3 year old to be beaten to death by the child's mother's boyfriend? What did the poor innocent child ever do to deserve a short life filled with so much pain, misery and shattered innocence? Why did not God strike down the man beating the child before the child paid the ultimate price? Why are children the world over being abused and debased? And of course this extends out to countries in civil war and genocide. Innocent, vulnerable people filled with pain and terror and then death. Where is God then? Why do babies and children get cancer and suffer horribly? Why are babies born with birth defects and genetic diseases? Why do I have a baby who looks perfect on the outside but has a horribly defective heart that causes other issues? A baby who may not live past 1 year of age. A baby who CANNOT be healed. A baby who if she reaches adulthood will face a whole host of other health issues on top of the idea that death is imminent and questions of WHY ME?

Because God makes mistakes.

And the idea is born.

I have recently begun reading "When Bad Things Happen to Good People" by Harold Kushner. I am particularly intrigued about Kushners' thoughts and interpretation of the book of Job. Job, a righteous man. A true believer in God who even when God takes everything away from him still believes and worships God. Why would God strike down a man who is absolute in his faith and worship of God? Many thoughts prevail but as Kushner notes there are three basic principles that apply. "1. God is all-powerful and causes everything that happens in the world. Nothing happens without His willing it. 2. God is just and fair, and stands for people getting what they deserve, so that the good prosper and the wicked are punished. 3. Job is a good person." Yet, as Kushner points out, we cannot possible think all three principles at the same time when Job is being struck down and suffering. Job cannot possibly be a good person if God is making him suffer because God would only make the evil and wicked suffer. Therefore you must believe that either Job is a bad person, God is not fair and just or that God is not all-powerful.

The more I was thinking of Job and the three principles the more I was coming to the realization that God makes mistakes. I still absolutely believe that God IS all-powerful. However, I do not think that Job was a bad person and I am coming to believe that God may be just and fair but it does not apply they way I (we) would like to see.

God makes mistakes.

The more I tossed this idea around the more it began to make sense to me. See, as I understand the teachings of the Bible, God made us in his own image. If God did indeed make us in his own image and we are not perfect and we can fail and we can make mistakes does it not stand to reason then that God is also not perfect, that God can fail and that God can make mistakes? He is in charge of the entire world...can he possibly keep his eyes on everything at all times?

This then leads me to my next thought.

God is merciful.

I think God is merciful because He knows He makes mistakes. If He is perfect and everything that happens is sanctioned by Him, then why would he need mercy? He would tell us that He does know and sanctions all and that we just need to deal with it. Period.

I don't believe that anymore. I think God knows he is fallible and therefore he extends mercy to us in a way to "make it up" to us. Mercy to me is that Carolena does look perfect on the outside. She is not still in the hospital and did not undergo any heart surgeries in the first week of life. Of course I think God extends mercy in many different ways. I think God knows exactly how much we can handle. For some, even though terribly tragic, the lose of their child is God extending mercy to the parents.

Which brings me to my last point. Faith.

I know God does not perform many miracles. Even Jesus when He was with us on earth did not perform all that many miracles despite how many suffering people pleaded with him to do so. Jesus, nor God, performed the ultimate miracle in saving himself from being executed for no real crime. Jesus was teaching us that we must have faith because God is not just going to step in and perform a miracle just because we ask or pray for one. Even though God does not answer our cry for a miracle when He makes a mistake (therefore being just and fair in correcting what He did) we must still have faith that God exists, that He does know what is happening and that He will have mercy on us when He makes a mistake.

I have no idea what will happen from here. I know God already knows what will happen and I have to trust in Him to know what is right for Carolena and for my family. I have to believe and have faith that God does have a purpose for everything that happens even when he loses track and mistakes are made. Carolena still has a very long road ahead of her with super scary surgeries and lots of risks but I have to have faith in God.

Monday, November 2, 2009

Halloween 2009

The boys were so excited for Halloween this year. Todd LOVES costumes and dressing up. Of course Kyle LOVES getting all the candy! The boys got their costumes a couple weeks before the event this year. Which is a big change for us. We are usually scrambling around the day before trying to get the perfect costume in the midst of all the other slackers who have procrastinated to the last minute.
Kyle was GI Joe (really just an army man costume but he did not know the difference). After much back and forth Todd finally settled on the Incredible Hulk. The child would have had 10 costumes and changed throughout the night if we would let him. Kyle was so excited that he was going to get his face painted in camo colors and Todd was super jazzed about getting to spray his hair green. So cool. This is what Halloween is supposed to be. Little C was a bumble bee. She has the cutest little fluffy tutu. Although we did not get any pics of her on Halloween night she was dressed up. We dressed her again Sunday and took her pic then.

Of course something had to wait until the day of so our pumpkin did not get carved until Halloween morning. The boys decided how they wanted the face to look (still cannot believe they agreed from the beginning and there was no fighting) and I did the carving. Our pumpkin had real blood on it from me cutting my thumb. At least I showed the boys how dangerous knives can be! I also got to make some banana bread, roast pumpkin seeds (which noone is eating) and got caramel on two apples. Considering where I thought I would be at this point in time, I just thrilled that I got to do all this, dress up and go trick or treating with the boys. BTW, Kevin is the scary clown. He scared many, many little children.

We all really enjoyed going to Auntie Paige's and Uncle PG's to do a hay ride and run around to tons of houses getting gobs of candy! The boys really cleaned up on the chocolate. When did everyone start buying the good stuff...I never got that many candy bars when I was a kid. Seriously. We used to get super excited if we got like 5 candy bars. Sheez. Kids these day are spoiled. To top it all off the boys got little buckets with full size candy bars from their babysitter (and our neighbor) and full bags of candy bars from our other neighbors. I think will be eating Halloween candy until Christmas! Actually I am thinking Kevin will be bringing a bunch to work soon.
After the trick or treating we hung out at Aunties house partying until the boys finally crashed around 10pm. Never thought they would actually go to sleep with all the candy they ate but I guess the day was just soooo long and fun filled.

Sunday, November 1, 2009

Past Time

As usual, I have started several posts which are not finished that I had the best of intentions of finishing and posting. And as usual, these posts are languishing in my saved drafts.

Oh well.

So many things have happened since my last post. I really did have the best of intentions of writing about them individually. I really dislike doing one large post giving just the brief highlights but in the interest of getting this all down here comes another all inclusive post.

In no particular order here is what my life has been.

The second of my three cats passed away Oct 11. Each time I lose a kitty I feel like I lose a little of my connection to my past. I had Buca for 13 years. 13 years in which I graduated college, got my first job, moved back home, felt the lose of a good man I considered a brother, devastated by the lose of my father, experienced depression and panic attacks, met my husband, got married, had three children, bought my first and second homes...the list is just endless. Any yet with all these things that have happened I know there is so much more waiting in my future.

Todd got a second award at school. He was awarded the best writer for the month of September for his class. I am just so proud he is doing so well at school. His teachers say he is quite the I get really excited when he gets an academic award. I really worry about him. Kevin says I baby him too much. I have no way of explaining my connection to Todd other than he is my heart. Don't get me wrong. I love all my children equally but Todd is just something else for me.

Kyle is rocking right along. He is so adaptable you would never know our life (and his) has been in such turmoil lately. Kevin and I met with his teacher for our conference and we learned nothing new that we did not already know...he is extremely bright (one of the smartest in his class). He is still a little self centered but extremely sensitive. He thinks on a higher level making it hard for him to make friends. He drives me nuts but I have long ago determined that it is because he is No joke. I find myself getting aggravated with Kyle over the same stuff I get aggravated with Kevin. It is really creepy how close our kids mirror us.

Little C is doing as well as she can. She is having some serious eating issues. We have taken her to the GI doc and he is confident it is just reflux and irritated esophagus. I am not too sure. Seems a little simple for the way she is acting but who knows. I have to trust that the doctors know what they are doing. C just started a plan with meds. If the first does not work, we go on to the second, etc. I really hope this works. I am terrified that she is not getting what she needs to thrive. She is already struggling with weight gain because of her heart. C did just fine with her tummy surgery. She was only in the hospital for 4 full days, the 5th day she was discharged. I am very grateful for all the fabulous doctors who took care of her. We have recently learned that the cardio docs want her to have her Glen around 4 months of age. She turns 4 months old Dec 19. We will get a more firm surgery plan on Friday. I have so many feeling about this but I just cannot put them here now. I hope to do so soon.

Paige and my good friend Megan hosted a beautiful baby shower for me and little C. I was so overwhelmed with how beautiful everything was. The decor, the theme, the drinks, the food...everything was just so sweet and thoughtful. I was truly blown away by how many friends were able to attend and how little C's story is spreading. So many people are praying and thinking of her. I am so humbled knowing how many people care for us and Carolena.

These are the things I hold on to most when I get so frustrated that I hit my solid bedroom door and almost break my hand. I would highly advise hitting something much, much softer.

And no matter how truly pathetic I feel...I know how much worse everything can be. I AM grateful C is doing so well but I am only human and I can only handle so much before I break.

I know there is so much more but I just do not have the time. I would like to put out to everyone who is praying for Carolena (whether you read my blog or not) that Kevin and I feel her being surrounded by these prayers and that they are working. She will not be healed but she will have a great life. Kevin says she is not a miracle baby, she is a blessed baby. I agree. She is blessed and we thank all of you who says prayers for her and us. Thank you.