Tuesday, August 25, 2009

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.

7 comments:

Keysgal@QuietWater said...

All I can think to say in response to this post is AMEN

Anonymous said...

Thanx so much for updating us
Ash! We have all "hit our knees" up here thanking God for answering our prayers! One of my constant prayers has been that God would give you and Kevin the strength to handle whatever came ... but, I also asked that he would give Kevin the strength to take care of you. Another prayer answered! I am thankful too for the person that Kevin is and the way he loves you and your children. He is a blessing to our family and we love him!

Aunt J

*pab said...

I have no words. You said it all, and so well. Kevin is wonderful blessing to all of us and, most especially, to you my dear sister. xxoo

Lizz said...

Ashley you did a beautiful job on your post. God is good. Your beautiful little girl has given you a lot to be thankful for. She is good hands and is lucky to have you as a Mommy and Kevin as her Daddy. Lizz

Robin said...

what a beautiful post, Ashley. Continued prayers headed your way for your entire family. -Robin

Kristi said...

That is such a thoughtful post. It shows great strength of character to focus on the blessings. It is so easy to dwell on the problems. Thank you for indeed focusing on the blessings! I pray for your strength as I pray for Kevin's - so that you can be the strength for Carolena. Where would we be without our husbands? They are truly a gift of God.

Tiffany said...

That is the sweetest post Ashley. I am so happy that things are looking so positive for Carolena. I am also happy that things are going ok for the boys. I wish that I lived closer and could help. But I will try to do what i can through prayer and encouragement. You have a long road ahead but I am so happy to hear how the little things are looking good and many of the big ones too. I am so pleased for you and Kevin you are an example to us all. Not that I am surprised you always have been. We continue to pray for you and your beautiful family.