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.


Kristi said...

In order for people to have the opportunity to support your family by helping, you have to accept the help! You are not only benefitting, but your friends and family are also! We pray for you, Ashley and Carolena every day.

Keysgal@QuietWater said...

That about says it all. That was one tired baby who came back to her Pappi's apartment yesterday but she did well eating last night, at least the feedings I saw :) and again this morning. She looked absolutely adorable when she left with her sweet mama this morning for their doctor appointments. Kristi is so right you know.....accept the help being offered because it's the only way for others to help you out right now. Makes us all feel we are part of .....what did Auntie Paige say?? TEAM CAROLENA. You go girl. We love all of you.

Chris said...

Had to laugh..."well, duh. she just incubated her for almost 10 mos..." Of course, you and Ashley know her better than anyone in the world could...but as thoughtful, intelligent, insightful, and watchful parents, you have no idea how truely rare you guys are as cardiac/icu baby parents. Not to knock the other parents, but you guys have these traits in spades. Just by having you guys as parents, along with the whole of TEAM CAROLENA, will give her the best possible advantages. That being said, every favor done allows you to spend more time with the boys, and keep a more normal schedule too. We think of you guys everyday, and we're channeling lots of positive thoughts your way! :)

h-anderson-1 said...

Ashley and Kevin, I am following your blog and keeping you in my daily thoughts and prayers.
Love, Gina

angie said...

We honestly know how you feel with all the doctors appointments, feeding issues & stessing over what is to come. Emma had her heart cathe at 3 months, a PA band placed at 4.5 months & she is scheduled to have her VSD's repaired in October. I must say you don't really get used to all the appointments but they do get easier, I promise. The first one is always hard on everyone. You are in our thoughts in prayers.

Blogger said...

I've just installed iStripper, so I can watch the best virtual strippers on my taskbar.