6 Days, 6 Nights and Counting

Most of the day I forget that Carolena has such severe heart defects and that we need to watch out for any symptoms of her malrotation. See looks and acts just like a normal infant. In a way I am grateful that we are not currently dealing with more issues. On the other hand every time I remember that she is different I am sad all over again. I know that she will be back in the hospital facing 4 different surgeries...this is not a question of if anymore but when. I really hope we get to stay at home as long as possible before having to go back to the hospital.

Sweet Angel

Of course just to remind us of how precarious our situation is, Kyle contracts the swine flu from school. Total separation between me and Carolena and the boys has been the rule in our house since Friday. Let me just express how awful it is to have to choose between my kiddos. I have one who feels miserable from the flu but I cannot even give him a hug without then having to totally decontaminate myself before handling Carolena again. This does not just mean washing my hands but, taking a shower, changing clothes and using like a gallon of hand sanitizer before even getting near her. Since I am nursing her I would have to do this every 2 hours of the day. So, not really feasible for me to be the one to take care of the sickies. Kyle has been okay with it but last night he wanted me to hug and kiss him. Horrible decision to make whether or not to take the risk. Of course I did give him a kiss on his head and helped with his medicine (which apparently tastes awful) before going to disinfect myself again.

First Day Home

So far Todd has not been sick but just as precaution he has been quarantined with Kyle. Fortunately we are able to shut off half our house for the boys to be in. PG was kind enough to let us use the scamp for the last two night which is where all the boys have been sleeping. Today the boys are back in the house but under very severe restrictions.

Before Lockdown

All of this just reminds me that we have a different life now. One that involves severe restrictions and having to choose between the kiddos. This is never want I ever wanted to happen but it is where we are. I cannot risk Carolena getting sick. Right now she has to take priority. I keep thinking that if all goes well and God answers all of prayers we will be a "normal" family again in a couple years. After Carolena has her heart surgeries and stomach surgery. After she is not so fragile health wise. After we settle in and move forward leaving all the hospital visits behind. I will know we are there when we finally get the okay to only see the cardiologist once or twice a year. I hope and pray we get there.

Such good big brothers

For now I am grateful that I am home with Carolena. That she does not have to be on oxygen. That she does not have a feeding tube. That she can not only eat on her own but nurse. Is it frustrating, absolutely. But I get to be a parent to Carolena right now which is far, far more than most moms with heart babies. I feel blessed that my worst complaints right now are that she is impatient with nursing and that we cannot just get up and go somewhere (due to the isolation).

God is listening. I know this.

What I am Grateful for Today...

Obviously I am super grateful that Carolena was cleared to leave the hospital and go home today. Kevin and I are a little surprised at being released this early as we did expect to spend at least one more week at the hospital. So, as is usual for us we are totally unprepared for bringing this little girl home. When I say unprepared I mean UNPREPARED...we do not even have one bag of diapers at home. This of course brings me to the main reason for my post today...what I wanted to write about being grateful for.

I am grateful for my family. My mom, my sister and brother-in-law. Each has made sacrifices to help us out. I am so overwhelmed with just how much I have been unable to do at home and how much they have stepped up and done for me.

Paige has been truly amazing, which of course I knew she would be. I specifically asked that she come to St. Pete with us because I know if I have any issue, Paige will take care of it. She has no problem being aggressive and assertive to get answers and make sure that I and Carolena are getting the best possible care. I am so thankful that Paige was there with us as we battled to get my c-section scheduled. She had all her numbers lined up and was going to start calling all her contacts if the doctors did not shape up. She made sure I got breakfast prior to 9am the day of delivery so I would not be starving all day and insisted (actually argued) with the OB doc that I get to eat as soon as possible after surgery (and she won). She took care of me and Kevin by bringing us snacks (including Passion Tea from Starbucks, yummy!), lunches and dinners while I was still admitted to the hospital (you know just how tasty hospital food is...plus Kevin was not having anything provided). She walked with me and sat with me for endless hours watching over Carolena. She made sure I was taking care of myself and took some of the pressure off of Kevin going back and forth between me and Carolena. She was constantly watching over us and taking care of us so we did not have to do anything but focus on me getting better and taking care of Carolena. Even now she is going to Target for me so we can have diapers, wipes, and other baby items I did not get prior to us coming home. This is after she was at work all day and taking Z with her. I have a hard enough time doing my own errands much less taking on someone else's as well. The major thing she is doing for me right now is helping plan and host (opening her house) Kyle's b-day party this Saturday. I cannot even express what this means to me as I was so worried that Kyle would not get the b-day party he deserves because Kevin and I are so busy with Carolena. She continues to help us while still smiling and being positive every step of the way.

Without even a question, my mama stepped right in and took over care of the boys whenever we needed it. Which of course has been quite a lot. And is not really a hardship for the boys...as well, they do love their Pappi. Mama had the boys with her all through the delivery and made sure they made it to the hospital to see Carolena and me after delivery. And even though I know she really wanted to be with me she was kind enough to let Paige and Kevin team up my care so she could be free to take care of the boys. She has been quite the mad driving woman as she has been going back and forth between Clearwater, St. Pete and Fort Myers making sure the boys are situated. She left Sunday on short notice to take the boys back to FM quickly grabbing her stuff and taking off so Kevin could stay with me for what we thought (hoped) would be only one more night but turned into 3. Then today she dropped the boys off at school, drove to Kevin's work to pick up car seats that we had not picked-up prior to going to St. Pete (uh, kinda important), drove back to Clearwater to get some more of her stuff (being as though she rushed so much on Sunday), stopped by St. Pete to drop off the car seats and you know clothes for Carolena to come home in (again, duh) and then back to FM to get the boys until we could all get home. Sheez, makes me tired just thinking of all that driving. And of course she is taking care of my house, cleaning stuff up and taking care of my kitties (which have been getting no love lately). Even though I have not seen her as much as I did when the boys were born I know she is taking care of all the little things.

And of course, brother-in-law PG. He has been all around info disseminator for me and Kevin so we would not have to try and keep up with phone calls and emails to all the wonderful people who are following Carolena's progress so closely. He set up a shutterfly account and posted all the pics of Carolena so everyone could see our beautiful baby girl. PG is able to help in a pinch and pick up the boys, keep our pool from turning green and run errands when needed.

I am unbelievably blessed to have such truly unselfish, caring family who will literally drop everything and help me when I ask. I am spoiled beyond belief.

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!)

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...

Hospital or Home?

Some things never change....

Daddy's Already Wrapped

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.

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.

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.

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.

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.