Monday, January 11, 2010

My Dad

Would have been 66 today.

Wow. Seems so old yet so young all at the same time.

I have lived more than 12 years now without him being a part of my physical life. That is half as long as the number of years he was here with me.

So much has happened to me in 12 years that he was not here to share in. My pictures of these times are forever missing his presence.

I miss him every single day.

Tuesday, January 5, 2010

Realized I am Behind on Posting C's Progress

December 22, 2009 - Getting closer

I actually heard the words discharge and tomorrow (and in the same sentence) twice today. Hooray! We are at least talking about getting out of here. The plan is to do an echo in the morning and if C's effusion has not gotten any bigger then we get to go home. I have no idea what will happen if the effusion is bigger. I imagine we would need to consider moving to the next step of taking C to the cath lab and having a small drain inserted. I am praying really hard tonight that her effusion has not gotten any bigger and really hoping that is is still shrinking. Nothing else really to report. C did have a much worse day today at eating. Up one day, Down the next. The GI doc said today it could take up to 7 days to start seeing effects of the Prevacid now that she is taking it again. So, we just need to see how see does all this week at eating. Here's hoping that tomorrow I will email all that we are HOME!

December 23, 2009 - And a Merry Christmas to You

The major update...Carolena is HOME. Wooo Hooooo! She did have an echo this morning and the effusion is still shrinking. Well, it better be for all the meds this poor child is on, Seriously. Carolena cringes now when she sees me coming with the syringes. I just had to write down a schedule of what she gets, how much she gets and when. Poor baby. Hopefully she can come off some when she goes back for a recheck with the cardiologist Monday. If not drop the med outright then at least not have to take as much as often. Of course this all depends on her effusion continuing to go away. Other than that C is doing well. She is VERY happy to be home and is just smiling and laughing (as long as she does not need to eat). She had her first bath in 2 weeks and she was so nasty the water was turning dingy. She has not been able to have a bath because she needed to heal from surgery and then we got put back in the hospital. Fortunately she seems to be right back into her schedule she was on before all this started. She is amazingly good about her schedule. I think she takes after me...ha ha. Her eating is still iffy but I am really hoping her new gi meds will help her out. She does seems to vomit less now, well at least as long as she does not gag herself. She teething like crazy and thinks she can fit both fists in her mouth at the same time. Not good for a bad gag reflex. Well, we will all be sleeping much better tonight in our own beds (well my bed is C's least she thinks so...the little queen b). Thank you all for your prayers, good thoughts, positive energy, good vibes...C is getting to spend her very first Christmas at home with her big brothers and family. We are blessed. Hope everyone has a very Merry Christmas.

December 28, 2009 - Very Nice Christmas (written by Kevin)

Hello all, hope everyone had a wonderful Christmas! We sure did, starting with all five of us together for the first time in weeks on Christmas Day. Then good time had by all with Ashley’s family and then my large family. A special thank you Samantha, Shelby, and Ms. Lynn for coming over and wrapping our presents. You don't know how much that saved us after spending two weeks before Christmas in a hospital and thus way too many last minute details to get done. Then it was back to reality today as I (Kevin) took Carolena to her Cardiologist follow up in St. Pete and Ashley went to local hospital to have an Umbilical Hernia removed that she had been putting off for months. Well, Miss C has less fluid around heart so Dr. is cutting Motrin back in half (now two times a day) and Lasix to one time a day. This is good news and hopefully next weeks visit there will not be any fluid left and she can drop the Motrin all together as we feel this is not helping her stomach with already bad case of reflux. Her eating is still horrible but we are hoping this week will see improvement. As for Ashley, she is home in bed asleep. Come to find out, the hernia was huge and the Dr. now feels she has had it since birth. He says the multiple pregnancies had brought it out. So now a month of no lifting over “a gallon” of milk (well Carolena is heavier than that, so we’ll have to bend the rules after the first few days)! Thank you to my parents, especailly my mother, who has had the boys "dumped" on them many times now. So far, it doesn't seem like they've worn their welcome but I'm sure it wont last much longer. Thank you all for your thoughts and prayers, we truly believe they were answered and is why we had Carolena home for Christmas. Attached are some pics from the weekend. Take care and hopefully no more updates needed for awhile!! (sorry no pics with this one...will post some soon).

January 5, 2010 - Hopefully last major update for awhile

Yesterday C had appointments with the cardiologist and the gi. Her cardio report is good. Her heart is functioning just fine, her repairs are awesome and the fluid is all but gone. There is still a tiny bit of fluid but the cardio doc is not at all concerned with it. He said that what is there is not bothering her or her heart in any way. Yay! This also means that she can be off the Motrin. We are super happy about that as she hated taking the motrin. She had to take and it can upset her tummy pretty bad (go figure). She still must take the Lasix once a day but we are all hoping she will be able to stop that as well after her next cardio appt in 2 weeks. The appointment with the GI was pretty much the same as we have heard before. He actually said to me "you are doing a great job...she has chunk here (her cheeks), here (her little arms) and here (her thighs)." I tell you all right now...and you all are my witnesses...I almost picked up the chair and threw it at him. I was stunned. All we keep hearing is how we are feeding her all wrong. And she coughs, chokes and vomits all the time. And it takes FOREVER to feed her. And we literally have to FORCE her to swallow. And the list continues...I of course restrained myself from doing physical violence to the poor man who is only trying to help. Did learn one new thing. May be WAY too much info for you but C did have microscopic spots of blood in her poop. This could indicated that she does in deed have a cows milk/cows milk protein allergy. Ummm HELLO???? I have been asking that from the very first. Sheesh. So, we switched her formula to Alimentum which can help if she is indeed allergic to the cows milk protein. I have a prescription for a swallow study to see if she is swallowing correctly and if she needs any help with that. If so then we would work with the feeding specialist in the speech department. And we are continuing her meds because of the reflux issues. With all this I am really hoping that her eating will improve. Kevin and I are at the point right now that we just want to throw our hands up and frantically wave the white flag in surrender...we are just that frustrated. We cannot seem to get anyone to really help us because C is not declining and she appears to be pretty good whenever a gi doc sees her. But having to force her to eat while she is wailing and screaming (not good for her heart) and/or choking (um really not good for her know that whole aspiration thing) is really wearing us down. We keep telling the gi docs what we go through but nothing yet...we think we are going to let them try to feed her and see what happens then :) Other than the feeding stuff C is great. She is really trying hard to sit up on her own. She has finally discovered her feet and she really wants to put them in her mouth. She still thinks she can fit both fists in her mouth at the same time. She is trying to roll over again. And I just saw her begin to pull her legs up under her when she is laying on her tummy. I think she may be wanting to crawl soon...oh out. She smiles all day (except when I bring out the bottle...) and is really starting to laugh. She is really a very happy baby. Thank you again to everyone who is praying for us and following along on our journey. C is doing remarkably well right now. In the interest of not overloading anyone with emails about the mundane in C's life we will probably back off on the updates. When you do not hear from us that is a good thing. However, please feel free to email, call, text, im, skywrite or however you choose to communicate if you have any questions or just want to check up on us. We always love to hear from family and friends. I hope everyone had a great Christmas and New Year's. May our 2010 be without any surgeries...

Friday, January 1, 2010

Could Be Us

My heart just hurts today.

Last night I found out that little Gabriel passed away yesterday after developing severe complications after having his Glen open heart surgery 2 weeks ago. Although I do not know Gabe or his parents personally I feel connected to them.

Gabe's mom Lisa contacted me many months ago when she was searching for blogs about HLHS babies. Unbelievably she found mine. We have chatted and shared stories off an on as our busy lives would allow. Lisa's story very closely follows my own. She found out about Gabe's heart in utero and had many months to adjust. Gabe was born August 17, 2009...just two days before Carolena was born. Gabe had to endure an early surgery but recovered well and after a few weeks went home to be with his mom and dad.

Gabe was a strong, happy little boy. Very much like C in that he did not require a lot of monitors or meds at home. He also was bottle feeding and doing pretty good at it. When he went into surgery 2 weeks ago he was smiling, laughing, discovering his hands...very much a normal 4 month old. Now, just 2 weeks post surgery (the same one C had), Gabe is an angel in Heaven.

I do not understand or know why. I only know that I am reminded everyday to love, hug and appreciate all my kiddos as we never know how long we have with them.

Before C was born I never had a thought that I would have to watch my child die before me. I never even understood what so many parents go through. You may think I am being dramatic or over done or wonder why I would care so much about a family I have never even met but here is the thing...when you have a child like we do, we all end up being connected and what happens to them is felt by us because they are the ones who can truly understand what we go through.

I am praying for Lisa and her family.

I am crying because Gabe left too soon and it could be us.

If you would like to read more about Gabe please see