Saturday, September 26, 2009

Thursday, September 24, 2009

Carolena At One Month

Carolena officially turned one month old on September 19. I was going to put this post up on her one month birthday but then lots of crap happened. So, to document her one month with us, here is what she is doing...well ya' know doing in the loosest sense...

- She can roll over from her tummy to her back...seriously.
- She likes to "stand" when Kevin holds her up
- She is 22 inches long and 7lbs, 15 ounces
- She is still wearing mostly newborn sized clothes but is moving into 0-3 sizes
- She is wearing stage 1 diapers b/c we did not want to waste too much on newborn sizes
- Her features are very delicate
- She has really long legs, arms and fingers
- She is very alert and will spend long periods of time awake
- She is not a morning person, loves to be awake at night
- She is sleeping very well and will go 3 to 3.5 hours over night
- She does fuss and fidget alot but who can really blame her with her issues
- She is still really pink, we have not seen her turn blue yet
- She loves to stick her tongue out and chews on stuff
- She does not love pacifiers...I still have hope she will take one (I have tried 6 different brands now)
- She loves to be held and loves to sleep in bed with us
- She has been holding her head up since week one
- She is super, super stong
- She hates to be messed with
- She really likes her brothers and sits very still when they hold her
- She loves her bath, she is very calm and peaceful in the water
- She loves to cross her feet when laying down or sitting, this is her preferred position
- Her hair is still dark, with a little mohawk action
- Her eyes are still dark but are starting to lighten up and look blue
- She is smiling, it is NOT just gas
- She laughs in her sleep
- She makes sweet little sucking motions and sounds when sleeping

Here are some recent pictures of Carolena with her brothers and her favorite way to sleep...

Sunday, September 20, 2009

When Does the Sun Shine for Us

Right now I am looking at the expensive wood floor (that used to be covering the concrete in my bedroom) all layed out in my living room to (hopefully) dry out. I watching and listening to Carolena fret, fidget and fuss. And I am questioning whether good karma, the golden rule and a merciful God really and truly exist.

I have heard and read that happiness is a choice. You choose your attitude every day when you wake up. Okay. I like that. I choose to be happy and positive every day when I get up.

And then the day starts.

And I struggle with my choice because really there is too much wrong going on right now for me to be able to see the happiness.

Todd flooded the bathroom in my bedroom yesterday. He stuffed way too much toilet paper into the toilet and then tried to flush. Water was pouring out of the toilet. All over the floor. I had no indication that anything was wrong until Todd said something about the toilet getting water on the floor as he was trying to get the plunger from the other room.

I do not see the humor in this situation. I do not find this funny in the least. I am wondering what in the hell is going on. What have I done to possibly deserve this latest catastrophe. And while I understand that on the grand scale on things this does not rank up there with Hurricane Katrina or the Iraq war, this is a catastrophe for me.

Kevin and I worked very hard to redo our bedroom just 2 years ago. We did all the work. Stripped the room bare and started over again. Took us longer than the one week we had allotted. The thing I loved best about our room was the flooring. I pushed for the oak floor that cost a fortune. Kevin thought the other less expensive composite wood flooring would be just fine but gave in to my request. Now Kevin is doing his best to save the wood from being ruined from the 3 inches of water that covered it. He has had to remove base boards, door framing, the wood floor, the padding underneath the floor and will need to put it all back together again should it actually dry out. Most of the water went into my closet. While none of my shoes were actually ruined they are now in one corner of the room by Kevin's side of the bed. Everything is pulled apart in our room. To make it worse, since Carolena is sleeping in our room as well the whole room and bathroom need to be cleaned as soon as possible since it was toilet water that when everywhere. And not clean toilet water.

What makes this so upsetting is that we have been on the boys forever about how much tissue they are using and putting in the toilet. We have talked and talked to them. I even bought some wet wipes for them to use to cut down on the paper. Yet with all this talking and accommodation to give them the independence of wiping their own backsides they still do not listen.

We have serious issues with respect in my house.

Respect from the boys for the house and the belongings, respect for all of their toys, clothes, etc., respect for treating each other nicely, respect for us as their parents. Kevin and I are not immune to the respect issue ourselves. We scream and yell and fight and argue. And even after approximately 3 years of marriage counseling we still fight dirty. We have all lost our sense of respect.

In a time when we all need to come together as a family we are separating. In many different directions. And we are shattering.

Much like when a windshield is hit with a tiny little rock thrown up by the semi in front of you on the interstate. When at first you barely notice the teeny tiny little chip but all of a sudden there are cracks spreading everywhere. It cannot be put back together. You need to start over and replace the whole thing. Unfortunately there is no do overs or replacing in life. You have to mend what is there or stop it from happening in the first place.

Kevin and I have received no let up on Carolena either. We were prepared for all the worst case situations but we obviously did not prepare enough for this horrible limbo we are in. It seems that everytime a new test is done there is something else wrong. I guess this is what my MFM doctor was referring to when he said there could be so many more issues wrong with the baby because of the heart issues. Well, we chose to be positive and we chose life for Carolena. We chose to fight for her. Give her a chance. And that has not changed. But seriously when do we get a break. Both of us are under enormous pressure with her care and noone truly understands how delicate a balance she is in right now.

Carolena does not eat well. She has been gaining weight and we are thankful she does not have a feeding tube but honestly at times I think in a way it would be easier on all of us. She fights, fusses, fidgets, pushes the bottle away with her tongue and hands, she cries and grimaces in pain and refuses to swallow even a little bit. It takes a good hour to try and convince her to swallow just one ounce of liquid. The catch is that she cannot refuse to eat. We HAVE to force her to eat. And to top it all off, she throws up what little we can get down her. If this continues she will be put back in the hospital. What is the worst is that she does not nurse at all, she only takes bottles. So, after trying to feed her for an hour I then have to turn around and spend another 20 mins pumping to get the breast milk to feed her. Because of her weight gain issues she is on a mix of half breast milk and half formula. I spend all my day washing bottles and breast pump items and then trying to feed Carolena. My hands are literally becoming raw from all the hot water and soap with the number of times I am washing stuff. I cannot afford to just rinse her bottles, they all need to be washed in super hot soapy water or boiled as she cannot get any infection at stomach bugs as that could be salmonella which would be deadly for her as she has no spleen.

We do have her home but in some ways it is much harder on all of us. I am here but there is not much I can do with or for the boys as I have no time left to do so. Both Kevin and I are exhausted because of the way Carolena eats. There is no quick 20 min awake period in the middle of the night for her feedings. By the time it is all said and done you have been up for well over an hour. She eats every 2.5 hours. Does not leave a lot of time for sleeping. Or eating or anything else for that matter.

We both need a break but cannot afford to do so. We cannot leave Carolena with just anyone so that throws out Kevin and I doing anything together. If I go by myself then I am leaving Kevin with Carolena and the boys which is proving to be much harder than we anticipated. The boys are fine with Carolena but are not adapting to the fact we have less time to do stuff for and with them. They are still spoiled and selfish (by our own making...we know) and it is really too much to ask one parent to take care of all three of them at the moment. Not that Kevin has not offered as he has. But, he still gets a break during the day where he has no kids to watch or do stuff for. Even though it is when he goes to work and his work is just horridly stressful right now, it is still a break from kids. A chance to just be. I am not looking at having this kind of break for a very, very long time. Carolena cannot go into daycare.

Weekends are easier for me as we are all home but I am resentful that I get stuck in the house all day every day with the baby because she cannot go out. This is not a suggestion from the doctors but an adamant you must keep her secluded at all costs. Not an option. Each time we have taken her somewhere or allowed people in our house it is taking a huge risk. And each risk is stressful for us. Kevin and I would have a very hard time forgiving ourselves if it was through our selfish need to get out that we took a risk that exposed Carolena to something and she got really sick.

Kevin and I both feel we are living under a black cloud right now that we just cannot shake. We try to be good people as God wants but to what end. We are not happy. We chose to be happy but we are not. We all just want to sun to start shining on our lives and family again.

About to Break

If you are a fan of Linkin Park then you will of course recognize the lyrics below as the song One Step Closer. If you are not a fan, then you will have to take my word for it.

Right now, these lyrics just about perfectly explain how things are going in my world. Wish I could yell my way through the song like the lead singer. Maybe would relieve some of the stress. Something has to or Kevin and I will both break and I am not too sure we will be able to put it all together again.

I cannot take this anymore
I'm saying everything I've said before
All these words they make no sense
I find bliss in ignorance

Less I hear the less you'll say
You'll find that out anyway
(Just like before)

Everything you say to me
(Takes me one step closer to the edge)
(And I'm about to break)
I need a little room to breathe
('Cause I'm one step closer to the edge)
(I'm about to break)

I find the answers aren't so clear
Wish I could find a way to disappear
All these thoughts they make no sense
I found bliss in ignorance

Nothing seems to go away
Over and over again
(Just like before)

Shut up when I'm talking to you
Shut up, shut up, shut up
Shut up when I'm talking to you
Shut up, shut up, shut up, shut up
I'm about to break

Everything you say to me
(Takes me one step closer to the edge)
(And I'm about to break)
I need a little room to breathe
('Cause I'm one step closer to the edge)
(I'm about to break)

Friday, September 18, 2009

One Month

Carolena is officially 4 weeks old as of Wednesday although technically she is not 1 month old until tomorrow. I have always been a little confused with how this happens...the actual number date does not match up to the number of days. Please do not try and explain the time phenomenon to me, I do in fact understand how it works it just still gets me how it all works out.

Anyway, the little miss has been home over 3 weeks now. So awesome. And soooo very tiring. Kevin and I get to deal with all the normal infant behavior with the added bonus of trying to decipher Carolena's every move. Is her tummy hurting because she has gas like all infants or is she experiencing problems because of her malrotation? Is she screaming because she is cranky like all infants or is she not feeling well because her heart is not working efficiently?


Double UGH.

I have a hard enough time with the normal infant things without adding on constant worry about Carolena's fragile health balance. Her health could literally turn on a dime and we need to be ready to jump. Immediately pack up, jump in the car, call the hospital, med transport Carolena to St. Pete. No passing go, no collecting $200.

Tuesday we were in St. Pete with the cardio doctor for her visit. Carolena is still plugging right along. No symptoms of heart issues at the moment so we continue with the waiting plan. However, the cardio doctor did say he is okay with Carolena getting surgery to fix her malrotation sooner rather than later. This is based on her cardiac condition being stable right now and if the stomach surgery can be done now than it is one less thing to worry about once we start in on doing the heart surgeries. So, it looks like we will be having surgery in the next month or two. While I am completely freaked out about her surgery, especially because her heart is still unrepaired, I know that as long as all comes out well then there will be one less thing for us to be so worried about. Doing the surgery will drastically reduce the risk of her bowel twisting and her possibly dying for it. However, she could have serious issues under anesthesia because of her heart. Oh joy. Good news from cardio doctor is that we do not have to see him again for 2 weeks. I will take what we can get.

The best news we received from this week was from Carolena's appointment with her pediatrician yesterday. And just in case you missed it, we have seen at least one doctor, sometimes two or three each week since we have been home. I am terrified of how I will be able to do all this when I go back to work, which at this point is not an option. I have to go back to work. So, her pedi visit went well yesterday. Hurray! She gained 7 ounces in one week. She officially weighed 7lbs, 15oz. Awesome. Still not quite a return to birth weight but very, very close. Her pedi was very pleased with her progress and does not have us returning for 3 weeks. Holy cow, I could so get used to having a week with no doctor's appointments.

Today I found out a little more about Carolena's hearing. Because she was admitted to the CVICU right after birth she automatically gets screened for, hearing, etc. Her vision was just peachy, her hearing not so much. Of course all the docs said there could be many, many reasons none of which is actual hearing loss. Had her follow-up appointment today and the doctor is concerned because her testing so far is showing congenital nerve based mild hearing loss. If confirmed she will more than likely need a hearing aid to help her get to 100% hearing to prevent any development delays with speech, etc. Oh goody. One more doctor, one more round of visits. Just what we need.

So. We go one step forward, one step back. Such is the life of a child with complex severe congenital heart disease. BUT, Carolena is still at home. And all is good with our world.

Saturday, September 12, 2009

Some Random Saturday Pics

Todd got student of the week...I am so proud of him

Woo hoo...GO GATORS!

Sweet little Gator....

Bath Time

Carolena Loves her Bath

Wednesday, September 9, 2009

Deceptively Normal

Only time to do a quick post as need to pump to get some more mama's milk for the little Miss. Right now we are still moving along. Carolena is still managing quite well on her own. We are pretty much in a holding pattern just waiting to see how Carolena will progress as she gets bigger and older.

My meeting with the cardio doctor today pretty much confirmed that we are just waiting.


Waiting for Carolena to have symptoms.

Which of course will scare the crap out of me. She will have a hard time breathing, will turn blue, will not want to eat, etc. I am hoping I do not have to watch her health start failing. I am hoping we have a firm plan of action by then.

Right now I am okay with waiting. Being a scheduled person I am not sure how long I will be okay with waiting but for now with waiting, we get to be at home.

Carolena likes to be home. Tonight, she is the most relaxed I have seen her in two days. Not that Pappi and her house are not fantastic but I really think Carolena already understands what is going on and she appreciates her home. I want her days at home to far outnumber her days in the hospital. I hope we are successful.

Just to add to Kevin's post...the cardio doctor said today that we are just waiting to see how Carolena progresses. We do not have any heart procedures currently scheduled. We will not have anything scheduled until Carolena needs to have a procedure, including the heart catherization. We could go one day, one week, one month or more until Carolena needs a procedure. It all depends on her right now. The one additional procedure we will be having is surgery for her malrotation. The GI doctor really wants to address this and correct with surgery sooner rather than later (of course we the okay of her cardio doctors).

So, all in all things around here are deceptively normal...definitely maybe.

Tuesday, September 8, 2009

1st Cardio Check Up Visit

I'm not as good of a writer as Ashley, so bear with me! Today was our first trip back to St. Pete for Cardio check up visit. And let's just say it was an eye opener of what is to come. Our appointement was at 9:30AM, so we stayed at Pappi's in Clearwater while my mom stayed at home with our boys to take them to school. Of course 9:30 fell right when Carolena was to eat, so that got thrown off. Then, Dr.'s office acted like they didn't know why we were there. After they realized we were to get an x-ray and then head over to the other building for Echo and Dr. visit, we had to wait while they got a Script from the Dr. for the X-ray. Carolena only managed to eat about 20mil from the bottle during this wait time. Finally got X-ray and then headed over to Dr.'s office and wait to be called in.
While with nurse to get all those lovely wires hooked up, Carolena is all worked up and starving by now. The nurse then has to take blood pressure in three diffreent areas for some reason, which is near impossible with Carolena not holding still and crying. As the nurse finally takes a break so we can try and feed her more, come to find out this lovely daddy just stuck the bottle back in the diaper back upside down so now have empty bottle and very wet bag. So Ashley starts to breast feed her and during this time nurse finishes her check up. But well before Ashley can finish feeding, we are asked to move into another room, which of course throws off the feeding and now Carolena, with just a little food inside her, just wants to rest. After a little while, we go into Echo room and waking up Carolena and stripping her down is the final straw. Ashley and I are now litterally holding down her arms and feet while they do the Echo and Carolena is just I'm sure on the verge of passing out she is so histarical. They finally just stop the Echo so we can calm down our daughter. I run to the car and get her other bottle of breast milk and upon return find Ashley sitting quitely with Carolena pretty much a sleep again. She has been told the Dr. doesn't want us to feed her until he sees us. I didn't understand this but give in for about 5-10min. FInally, I just know Carolena is about to wake up again and will be virtually impossible to feed her once histarical again, so I tell them I have to feed her like it or not but at that exact time the Dr. walks in.
He is Dr. J, who I met moments after Carolena was born while he did her first live Echo (Ashley had never met him as she was still in Recovery). He is the one that found the Pulmanary Veins out of place. So, I start feeding Carolena while he proceeds to ask us a bunch of questions. One of his first comments is "man, she (Carolena) is complicated". Well aren't all heart baby's?! He is just perplexed she is doing so WELL and that everything (blood/oxygen/breathing)is still "balanced" (I attribute this to all the great people and prayers they are sending Carolena's way!). This is good news of course but he goes on to remind us that it all could change VERY QUICKLY. You can just tell he is very apprehensive Dr. H had let us take Carolena home so quickly. But after Ashley answers a bunch more questions, he comes right and says, "you are dead on and seem to know exactly what is going on, the risks, and REALLY know your baby well". Well duh, she just incubated her for almost 10mo and then lives with her every moment of the day since being released from the hospital. He goes on to say he is cool with us still having her home with us but is very concerned about her weight gain, or lack there of, and we need to go back to our Pedatrician on Thursday for another weight check up (we just saw him Monday, and thankfully, she had gained 20z since last Thurs). He also wants us to meet the new Dr. that does the Heart Cath, who just happens to be taking over this procudure from Dr. J. He insists he is very experienced but just feels we need to meet the "teammates" that are supporting Carolena for when the time comes. He also wants us to meet with Dr. C, the surgeon, again since it has been 2mo from our first visit. He is not saying anything is needed right now, but again, wants us to be preparred for whenever. We do know sometime between now and three weeks, Carolena will have a heart cath. Dr. J also said to fully expect open heart surgery to fix the pulmanary veins before the 4-6mo Bi-Directional Glenn surgery. So between now and 2mo, Carolena more than likely will get her first open heart surgery.
I came home tonight to be with boys and get back to work, but Ashley was already staying another night up north to visit with the GI surgeon in the AM (they don't see patients on Tuesday's so couldn't schedule same day) for check up on the Malrotation (Stomach/Intestions flipped from side to side). If they cannot set up meeting Heart Cath Dr. tomorrow as well, then Ashley has to go back to Tampa office on Friday. And remember, we now have to get Carolena to Ped Dr. on Thurs. for weight check. So that makes at least one Dr.'s visit EVERYDAY this week and Monday was a holiday!
So, yes, we are pleased Carolena got good marks on her check up but it was a rude awaking of what is to come. I'm sure once we get the hang of who, where, when, it will become easier than the first day as today was but it is still going to be exhausting. And more than likely, Ashley will take the brunt of it as she is still on maternity leave.
Thank you all again for your prayers, concern, and help. I have to say, we are blessed to have so many friends and family that care. From the grandparents and siblings on both sides watching our boys numerous times, even when sick with Swine Flu, to friends bringing over meals and even mowing/weed eating our yard (guess he didn't like having a trashy looking neighbor!). We feel very awkward accepting these kind gestures but it has helped give our kids a good meal on night we were totally not preparred, so guess that is the point of it. I do have to remind myself that things are actually great right now and while they are good (Carolena home and not on any machines), we need to live as normal as possible. Carolena will be in the hospital again before we know it, but right now we should be able to take pretty good care of ourselves and enjoy our time together as a family.

Thursday, September 3, 2009

The First of Many...

Yesterday sucked.

Today really, really, really sucked.

AND the best part of all, we are only just beginning. There will be many, many, many more really bad, truly awful days.

Kyle has been sick with Swine Flu since last Friday. This particular flu is not so bad unless you are Carolena. She hits all the high marks of being high risk of death from Swine Flu if she gets sick. She is less than 6 months old, she has an underlying condition with her congenital heart defects and she has no spleen which means her immune system is missing one of the vital organs in fighting the flu. Seriously.

Of course as Kyle gets better, Todd gets sick. Yesterday I got to pick him up from school for the first time in over 2 weeks. As soon as he gets in the car he sneezes. As I look back at him I can just see that he does not feel good. By the time we get home he is running a fever and admits that he feels a little sick. I am so over the flu.

Kevin and I both just went to get our flu shots. I figured while I was there I would triple my vaccination fun and get pneumonia and tdap as well. Yes. I am crazy like that. Just one of the joys of having no spleen. Apparently I should be taking a low dose of antibiotics as well (just like Carolena) but I do not. I guess I just like living on the edge.

So today begins with no sleep as Carolena had a rough night and I get to deal with all of it as Kevin is still sleeping outside in the scamp with Todd to keep him and his germs out of the house. Totally sucks. Then I get to feel like a truly terrible mother as Todd is dropped off at my sister in laws house because we just cannot risk Carolena getting sick. I am now kicking both of my older kiddos out of the house when they feel just awful and want nothing more than mom and their own bed. To top it all off, I take Carolena to the pediatrician for a follow-up appointment and learn that I am totally failing in my care of her. At now just over 2 weeks old she should be close to if not at her birth weight. Well, she is not even close. Even better, she has lost even more weight than when we took her to the doctor last week.

Weight is key when it comes to heart babies. If she is not gaining weight then there are all kinds of problems. Her heart could be failing. She could not be getting enough for her brain to develop correctly. And on and on and on. So even though she has been nursing every 2.5 hours it is not enough. She is not getting enough food. On top of everything else I now have to ramp up her feedings. I am at a very low place right now and I cannot even think how much worse this is going to get.

Occasionally I think it would almost be better if she were still in the hospital. At least then with it staring me right in the face I am not able to get any grand ideas about how normal she is. Carolena is not normal and she never will be.

The other day I prayed to God that I will accept whatever He has chosen for Carolena but please, please do not let her suffer. I think daily about losing her and it sucks. And with more confirmation making it real for me it sucks even worse. I am being humbled by this whole experience of having such a sick baby and do not think for one minute that Carolena is not a very sick little baby because she is. And this is something that I cannot let go. She is home for now but I do not know how long that will be. I still have not completed her nursery because the more I do the more attached I am to her. I am scared everyday and today truly sucked.

Wednesday, September 2, 2009

I just LOVE her little feet

And I am so happy they are not blue/purple anymore...yea!