One of the funniest things we have noticed her doing lately is raising her left hand up above her head in a manner straight out from her body. The pictures are not great but it is still looks like we should all hail the queen...
Tuesday, August 25, 2009
All Hail...Carolena!
Carolena has some pretty funny habits already...she is really fiesty and stubborn. Perfect traits for a little girl facing some pretty serious heart surgeries. Not so good when she has decided that breast feeding is just too slow for her (not so good for mama either, ouch!)
Update
So much has happened since the last time I posted, I am not exactly sure where to start. I have wanted to write a post about the delivery of Carolena and all the things that went right. I have wanted to write a post about for all the things I am grateful. I have wanted to write a post about all the frustrating things that have happened. However, none of these have been written. So, here I am going to try and put everything into one post.
First off, Carolena is doing very well considering the severity of her heart defects. There are so many other things that can also be wrong with her anatomy due to her heart but so far we have been blessed in that these things are relatively minor. I say minor in considering what we are comparing them to. There is still debate over whether Carolena has no spleen or several small spleens. Dr. H. is pretty insistent that she more than likely has several small spleens but they are not going to be visible at this time. Maybe when she gets a little older and bigger. Probably the most serious side effect of her heart defects on her other anatomy is that she has malrotation of her stomach and intestines. Because her heart is only right sided her body responded by forming her other organs accordingly. What this means is that her stomach and intestines have switched sides of the body. Good news is that everything is there and is functioning properly, ie she is eating and pooping just fine. However, she does run an increased risk of having her bowels twist which could become very serious if the bowel becomes blocked. Surgery is required to correct but Dr. H. wants to hold off on doing the surgery until we actually see her having problems arise from this malrotation. He has said she may never have a problem with it at all. He does not believe in doing a surgery just to be proactive when it is not necessary. I am so completely grateful for this thinking as I am wanting to save all her strength and energy for her heart surgeries. We know for a fact she will need the bi-directional glen open heart surgery around 6 months and she will need the full fontan repair open heart surgery around 2 years of age. Outside the stomach issue, the only other possible surgery is having to do an open heart surgery prior to 6 months to correct her pulmonary veins that are kinda running haywire and to band off her main pulmonary artery to restrict some of the blood flow to her lungs. Right now she is in the 90's on her oxygen saturations but Dr. H. thinks these may come down to where he would like to see them once she outgrows the infant stage. He also wants to do a heart catherization around 6 weeks of age to check on her heart anatomy from the inside. So all in all she is doing well. Sounds like she is not but she really is. She is eating, breathing, sleeping, peeing, pooping and behaving like any other normal infant. Only down side to being able to come home soon is she will be on house arrest (no going anywhere, extremely limited contact with anyone outside of me, Kevin and the boys) with at least 1 if not 2 visits to St. Pete each week. BUT, being home soon, especially prior to any surgery, will be awesome.
The boys are doing well without us being at home. There have been some minor issues but nothing out of the range of normal 4 and 6 year old boys. I think Todd misses us the most and it breaks my heart. I have been away from home for a week now and completely miss the mundane routine normalcy of our usual day. Hospitals really suck time. An entire week disappears before you even realize it. Big thanks to both Grandma and Pappi for taking care of the boys and keeping them on a pretty regular schedule. Both are going to school and generally have not been disrupted too much. I am not sure how it will all be once we get home but we will all just have to adapt. Kyle seems to not be suffering too much. He really is an adaptable kid and for that I am so thankful.
As I mentioned before I have wanted to do a post for all the things I am grateful for but I have not been able to sit down and put in the proper amount of time. I am continually reminding myself to be grateful for all the things we do have and not let all the little aggravations and frustrations get to me. Each time a new baby is brought into the CVICU I am reminded of how much worse we could be right now. We still have such a long way to go so I am just trying to stay as positive as possible. For today, instead of trying to do a long post of all things I am grateful for I am going to focus on one thing. I hope to be better at posting and then I can do something I am grateful for each day...because I really feel I could do one post a day for an entire year and not repeat one item.
Today I am focusing on Kevin. As all married couples we have issues and are not always in sync. We argue and fight for control. We love each other but well like any two independent people trying to make a life together we have issues. However, Kevin has been an amazing partner, father and doer of all things wonderful this past week. Please know that I am not surprised by this but an truly grateful. Kevin has taken on the brunt of the work. He is juggling taking care of me after my c-section, doing our required work at the Ronald McDonald House (even going to Publix to buy me my favorite snack foods and laundry detergent and cleaning all the sheets and towels because I am so picky about stuff like that), making sure the boys are still feeling special (taking them to a baseball game, coordinating care of the boys and making sure Kyle has his b-day party this weekend), making sure he is here every day when the doctors do rounds so he can be involved with the discussions on Carolena's progress and care and also trying to stay on top of work since everything is still so iffy with work. I know he is sacrificing sleep to make sure the rest of us are all okay. He is running in a million different directions and still takes time to make sure I eat enough, drink enough, take my pain pills, sit enough and do not lose my sanity sitting in a hospital all day. He made it possible for me to have my computer with me and skype to video call. He brought the hard drive so we could watch movies through the computer. He has definitely made it possible for me to spend all of my day being with Carolena which is where I want to be right now. For all of this and more I am grateful to be married to Kevin. I know I would never have made it this far without him and his support.
First off, Carolena is doing very well considering the severity of her heart defects. There are so many other things that can also be wrong with her anatomy due to her heart but so far we have been blessed in that these things are relatively minor. I say minor in considering what we are comparing them to. There is still debate over whether Carolena has no spleen or several small spleens. Dr. H. is pretty insistent that she more than likely has several small spleens but they are not going to be visible at this time. Maybe when she gets a little older and bigger. Probably the most serious side effect of her heart defects on her other anatomy is that she has malrotation of her stomach and intestines. Because her heart is only right sided her body responded by forming her other organs accordingly. What this means is that her stomach and intestines have switched sides of the body. Good news is that everything is there and is functioning properly, ie she is eating and pooping just fine. However, she does run an increased risk of having her bowels twist which could become very serious if the bowel becomes blocked. Surgery is required to correct but Dr. H. wants to hold off on doing the surgery until we actually see her having problems arise from this malrotation. He has said she may never have a problem with it at all. He does not believe in doing a surgery just to be proactive when it is not necessary. I am so completely grateful for this thinking as I am wanting to save all her strength and energy for her heart surgeries. We know for a fact she will need the bi-directional glen open heart surgery around 6 months and she will need the full fontan repair open heart surgery around 2 years of age. Outside the stomach issue, the only other possible surgery is having to do an open heart surgery prior to 6 months to correct her pulmonary veins that are kinda running haywire and to band off her main pulmonary artery to restrict some of the blood flow to her lungs. Right now she is in the 90's on her oxygen saturations but Dr. H. thinks these may come down to where he would like to see them once she outgrows the infant stage. He also wants to do a heart catherization around 6 weeks of age to check on her heart anatomy from the inside. So all in all she is doing well. Sounds like she is not but she really is. She is eating, breathing, sleeping, peeing, pooping and behaving like any other normal infant. Only down side to being able to come home soon is she will be on house arrest (no going anywhere, extremely limited contact with anyone outside of me, Kevin and the boys) with at least 1 if not 2 visits to St. Pete each week. BUT, being home soon, especially prior to any surgery, will be awesome.
The boys are doing well without us being at home. There have been some minor issues but nothing out of the range of normal 4 and 6 year old boys. I think Todd misses us the most and it breaks my heart. I have been away from home for a week now and completely miss the mundane routine normalcy of our usual day. Hospitals really suck time. An entire week disappears before you even realize it. Big thanks to both Grandma and Pappi for taking care of the boys and keeping them on a pretty regular schedule. Both are going to school and generally have not been disrupted too much. I am not sure how it will all be once we get home but we will all just have to adapt. Kyle seems to not be suffering too much. He really is an adaptable kid and for that I am so thankful.
As I mentioned before I have wanted to do a post for all the things I am grateful for but I have not been able to sit down and put in the proper amount of time. I am continually reminding myself to be grateful for all the things we do have and not let all the little aggravations and frustrations get to me. Each time a new baby is brought into the CVICU I am reminded of how much worse we could be right now. We still have such a long way to go so I am just trying to stay as positive as possible. For today, instead of trying to do a long post of all things I am grateful for I am going to focus on one thing. I hope to be better at posting and then I can do something I am grateful for each day...because I really feel I could do one post a day for an entire year and not repeat one item.
Today I am focusing on Kevin. As all married couples we have issues and are not always in sync. We argue and fight for control. We love each other but well like any two independent people trying to make a life together we have issues. However, Kevin has been an amazing partner, father and doer of all things wonderful this past week. Please know that I am not surprised by this but an truly grateful. Kevin has taken on the brunt of the work. He is juggling taking care of me after my c-section, doing our required work at the Ronald McDonald House (even going to Publix to buy me my favorite snack foods and laundry detergent and cleaning all the sheets and towels because I am so picky about stuff like that), making sure the boys are still feeling special (taking them to a baseball game, coordinating care of the boys and making sure Kyle has his b-day party this weekend), making sure he is here every day when the doctors do rounds so he can be involved with the discussions on Carolena's progress and care and also trying to stay on top of work since everything is still so iffy with work. I know he is sacrificing sleep to make sure the rest of us are all okay. He is running in a million different directions and still takes time to make sure I eat enough, drink enough, take my pain pills, sit enough and do not lose my sanity sitting in a hospital all day. He made it possible for me to have my computer with me and skype to video call. He brought the hard drive so we could watch movies through the computer. He has definitely made it possible for me to spend all of my day being with Carolena which is where I want to be right now. For all of this and more I am grateful to be married to Kevin. I know I would never have made it this far without him and his support.
Monday, August 17, 2009
Boys Loving on the Baby Girl
I just had to get some pictures of the boys giving the baby hugs and kisses. Of course the following pictures were not spontaneous but at least I have some pictures. The boys are actually pretty sweet about telling the baby they love her and giving my belly hugs and kisses. They tell her good night as well.
Thursday, August 13, 2009
A New Era
Kyle started Kindergarten today. He is now officially "in school." I never really considered PreK being in school. Probably because it is not required by law that children attend PreK, but a decision by the parents to have their children participate. So, we start a whole new era in our little world. An honest to goodness, real school attending child. I honestly do not know how we got here so quick and this is considering Kyle is starting later than most kids as his birthday is 3 days past the state required cutoff. He will be 6 for 95% of Kindergarten.
I really thought I would be sad and cry. I never cry. But somehow, maybe the pregnancy hormone thing, I was really feeling like I would. This morning I could not be more excited. I think I would have been the one jumping around hardly containing my excitement if that is in fact what responsible moms who have already been all the way through school do. Anyway, Kyle was excited. Which I love. Being excited about school is so cool. I want the boys to be excited. I want them to understand how important education is and how important it is for them to learn. I want for them to show this same enthusiasm all the way through college...high hopes I know, but maybe, just maybe.
I really thought I would be sad and cry. I never cry. But somehow, maybe the pregnancy hormone thing, I was really feeling like I would. This morning I could not be more excited. I think I would have been the one jumping around hardly containing my excitement if that is in fact what responsible moms who have already been all the way through school do. Anyway, Kyle was excited. Which I love. Being excited about school is so cool. I want the boys to be excited. I want them to understand how important education is and how important it is for them to learn. I want for them to show this same enthusiasm all the way through college...high hopes I know, but maybe, just maybe.
After being really excited last night, Todd's enthusiasm was not quite up to par this morning. It could be that whole he is not a a morning person ( just like me) but I think some of it was anxiety of starting a new school with a new teacher. He is not really used to the environment of his new school which is a more traditional setting with all different ages of kids milling around. I think he will get the hang of it after a few days. To make the day even more special, I got the boys cool new backpacks with matching lunchboxes and special surprise...new watches. I figured it was time (ha, ha) to start teaching the boys how to tell time on a real clock/watch. Kyle totally loves his, showed everyone...Todd, I think, needs a little more time to warm up to it.
At first I was a little put off by the (what I thought) was a weird transition period of having the boys come in on Tuesday for a half hour to meet with the teacher and then one full day of school on Thursday with just half of the class and then one full day on Friday with the whole class. But, I got to admit, I was wrong. I think this transition thing (while a a total pain for us working parents) is actually a good idea. Especially for Todd. And, again, this is yet one more reason I switched schools for the boys in that this new school does a little more hand holding for the little ones. Which is just so weird for me since I am all about making your own way, etc. I don't know, when it comes to my kiddos I just want them to be safe, protected and happy. And if they need more hand holding then I am going to find the place that works.
All in all I think this first day of leaving the boys in Kindergarten for Kyle and PreK 4 for Todd has gone well. I am hoping that the boys come home this afternoon filled with how much fun they had and how much they like the new school.
Wednesday, August 5, 2009
It Only Took 5 Years...
But I have finally heard..."it's not fair"
Oh yes, the wonderful, wonderful concept of things not being fair has insidiously slipped its way into dear Kyle's lexicon. I was beginning to wonder...
Kyle has always been one to want to be the center of everyone's attention. He sincerely believes he is the sun and the rest of us are just merely the little planets and stars that orbit around him. Much as we try, my husband and I are unable to convince him otherwise.
So, we have finally reached the next step...Kyle now believes things are entirely "not fair" if Todd is allowed to do something that Kyle is not allowed to do. This usually only happens when Kyle is being punished because of his own behavior. BUT, we are also getting into "not fair" territory when Todd ends up doing something that Kyle has opted out of and then realizes after the fact that what Todd got to do was in fact quite fun. And, because well Todd got to be in the lime light while poor little ole Kyle has noone paying any attention to him at all...it's just not fair!
Oh the joy.
And even though I know this is quite typical of children this age, especially like gendered children close in age, I really wonder how over the top Kyle will get since he already truly believes he is the sun and Todd is just merely a planet in Kyle's orbit.
Oh yes, the wonderful, wonderful concept of things not being fair has insidiously slipped its way into dear Kyle's lexicon. I was beginning to wonder...
Kyle has always been one to want to be the center of everyone's attention. He sincerely believes he is the sun and the rest of us are just merely the little planets and stars that orbit around him. Much as we try, my husband and I are unable to convince him otherwise.
So, we have finally reached the next step...Kyle now believes things are entirely "not fair" if Todd is allowed to do something that Kyle is not allowed to do. This usually only happens when Kyle is being punished because of his own behavior. BUT, we are also getting into "not fair" territory when Todd ends up doing something that Kyle has opted out of and then realizes after the fact that what Todd got to do was in fact quite fun. And, because well Todd got to be in the lime light while poor little ole Kyle has noone paying any attention to him at all...it's just not fair!
Oh the joy.
And even though I know this is quite typical of children this age, especially like gendered children close in age, I really wonder how over the top Kyle will get since he already truly believes he is the sun and Todd is just merely a planet in Kyle's orbit.
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