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.
Kevin
Tuesday, September 8, 2009
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.
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
Sunday, August 30, 2009
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.
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.
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.
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.
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.
Wednesday, August 26, 2009
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.
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.
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!)
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...
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