The Fundraiser

5K Walk/Run Fundraiser

Downtown Fort Myers

July 23, 8am

Some friends of mine are putting together a fundraiser for Carolena.  My husband and I are still a tad uncomfortable but are very grateful we have friends who care enough about us and C to go through all this effort to raise some money for Carolena's medical expenses.

Kevin and I have been back and forth on this.  We are both much better at helping other people than we are at accepting help for us.  We know and understand how hard everyone has been struggling the past couple of years.  However, at some point we had to let go and accept that people want to help us and accept that help as given.

I am very humbled and grateful for this gift two of my good friends are giving to us.

All the details have been posted on FB, but for anyone who is not on FB or who does not regularly check FB,  I am looking at you JJ :), here is the information as well.

To register for the race (should you be so inclined to be in Fort Myers that day...the weather is gorgeous, just saying...) go to http://www.therunshoppe.com/.  You will see C's race listed on the side.  Click on the logo and then you can click on the link and register.  You can also click to make a donation if you are so inclined.

To just make a donation without going through the main site, you can click here www.active.com/donate/BabyCdonations.

And I am still teaching myself how to run.  I got the jogging stroller and C and I have been going out during my lunch hour 3 days a week.  I can now jog over 30mins straight through which puts me around a distance of 2.6 miles.  I still have a bit to go before I can run a full 3.2 miles but I am slowly getting there.  I am still planning to jog the whole 5K, including going over the bridge (twice!) while pusing C in her stroller.  Very dauting task for me but all I do is keep thinking about how much C had to struggle through 2 open heart surgeries and recoveries all before she was 9 months old and I can feel my resolve get stronger.  I will do this, with C, in her honor.  I have said from the very first day I found out about her heart that if she would just keep fighting I would fight for her, every single day.  But, you know, the funny thing about all this running/jogging is that I think I may even be starting to enjoy it...how did that happen?

Almost Back to Normal

Yesterday I took C back to the orthopedic doctor to have the last of her sutures removed.  When the ER doctor tacked her finger back on he used three looping sutures.  I thought for sure we would have a huge issue with removing those suckers and C, of course, would freak out.  I asked Kevin to go with us to the appointment, figuring I would need Kevin to help hold and keep C calm.  For those not familiar with C's condition it can be a little freaky to watch her turn blue when she is screaming.  So, to try and avoid the chaos I am sure would ensure when C freaked, screamed and turned blue, I had reinforcements. 

And wouldn't you know...

When the time came to actually remove the sutures, there was only one left.  The other two had already fallen out and it took the assistant all of 3 seconds to remove the final one.  C did not even have enough time to work up a good scream at being messed with before the whole thing was over.  Even she was a little stunned at how quick and pain free the whole process was.  She still whimpered and whined a little because she had to get a little extra love.  But I can't really blame her as her finger, while much improved, still looks pretty bad.

The doctor did confirm that the end of her finger will stay attached and will live.  Yea!  And again reinforced that had the end been completely cut off, she would have the lost it.  The crush damage to the finger is too extensive for the end to survive and the doctors rarely, if ever, actually reattach a complete amputation.  The nail will most certainly come off completely and we are still in a wait and see on whether she will get a full, normal nail back. 

This whole situation has been so weird for me.  Here I am writing about a normal childhood injury/accident about the one child of mine who is anything but normal.  I guess this is what I get for trying to treat her as normal as possible.  Ha ha.  However, I would not change it.  C, at this point, has no idea she is not normal, that she is any different from any other child.  To me, it is amazing. 

The One About C That Has Nothing to Do With Her Heart

Sunday was such a lovely day. The weather here, as usual for March, is just perfect. I can almost forgive the 6 monthers and tourists their insatiable desire to vacation here, clogging up the roads, restaurants and doctor's offices with unbelievable traffic, when the weather is so beautiful...almost.

So, we were getting ready to go out on the boat. Due to our completely crazy schedule with the kids we do not get out as much as we would like. Well, that and the fact that the price of gas is totally insane. I know, all the people who live with snow are sending me dirty looks and rolling their eyes right about now.

Anyway, we were all getting ready to go. The boys were getting their bathing suits, shirts, shoes, etc. on and getting their back packs loaded up. Pretty much chaos. For all who know us and spend any amount of time with us, you pretty much know that we live in a constant state of chaos. Mostly because the boys are pretty lively and apparently my daughter has no fear. Ahem.

In our house, the doors to the rooms in which the little girl may not go remain shut. She is very quick and very sneaky so you must be quick about getting in and out of an area she in not allowed in. One such area where she is not allowed is the boys' room. In exchange for letting them have and play with the 1 million teeny, tiny Lego pieces they insist on having, they must make sure their door is closed. Cannot have the little miss choking on a miniature Star Wars Lego light saber. Oh how the force would not be with us then.

Todd, doing more or less exactly what he is supposed to do, goes to slam the door bedroom door shut. We do not allow door slamming in my house. There are way too many little fingers and toes around. Unfortunately, this time one did get caught. Little miss had her hand on the door to keep her brother from shutting it in her face. Todd, not looking, closed it right on her finger. Her pinkie finger on her right hand. On the back side of the door, right above the hinge. The absolute worst area to get your finger caught. Ugh.

As I walked over, C was not screaming or hysterical, just crying a little, I thought man, what is he doing. He knows we do not slam doors. I had no idea that C had her finger caught that bad. Fortunately for C, he immediately opened the door, never really completely shutting it, when he heard her cry. Had he shut the door completely, her finger tip would have been cut off completely and more than likely, no way to reattach her finger. When I got to her and finally looked down she was sitting there, holding her hand and there was blood. Did not look like a lot at first. Then I got a good look at her hand. Oh man. I freaked. The end of her pinkie finger was dangling at a very weird angle. I thought for sure it was completely severed. At the time, it did not really hit me. I freaked thinking about her heart. Could her heart take this kind of traumatic injury. The one thing I worried the most about was the one thing that I did not need to worry about.  Thinking back on the event now, I cringe a lot, turning slightly green while my stomach turns over.  Ewwwww.

After picking her up to find Kevin, and of course trailing blood all over the house, we wrapped up her hand and put ice on top of it. We quickly got her to the ER. The whole time, she was calm, not really crying and just sitting on Kevin's lap. By the time we got to the ER, thankfully a 10 min drive from my house without speeding, yea me, she was hurried back immediately and the ER pedi doc started right away. We had already talked to her cardiologist and because she did not need to be put under any anesthesia he told us treat her like a normal kid. Really?

So they did. He shot her finger with lidocaine and sutured her right up.  Essentially reattching the end of her pinkie figner.  Then we were told we would have to wait and see.  C did fine.  Of all the things I have seen with C and all the procedures she has had where I have to hold her watching her finger being stitched back on is by far one of the hardest, most stomach turning things I have watched. I do not know how the doctors and nurses do this every day.

She had a follow up with the pedi ortho surgeon Monday and he actually gave us even better news. Based on what he saw in the xrays, C's injury was actually at the best possible spot. The door actually caught her finger right above the nail bed. All the crush pressure/damage was on the top of the nail and forward. He said the most devastating part of the injury is the force and pressure of the door closing on that part of the finger, saying the crushing effect is so, so bad. Although C almost completely lost the end of her finger, she will be fine. The ortho said little kids rarely get an infection (of course we have to be extra careful with C) and because she got smushed above the nail bed she will more than likely grow a normal nail back. Even better not only will she not lose the end of her pinkie (it will reattach just fine) she will more than likely have full feeling as the nerve in the end of her finger will regenerate. Again, because she is so young.

So, there you have it. A hospital visit and an update about C that has absolutely nothing to do with her heart.

I'm not sure I am going to survive my children being young.

Just for the record, Todd is fine. He felt and still does feel really bad but he knows we know it was just an accident. And C is doing fine. She came through this whole ordeal with hardly an issue. She is using her hand and still crawling around and pulling up on everything. She barely recognizes there is something wrong with her finger. The only time she gets agitated about it is when I change the dressing at night after her bath. Then she sees it and starts whimpering a little and holding her hand out to me like she wants me to kiss it. Once the dressing is back on, she totally forgets about it and keeps going. Should be interesting next Monday when ortho removes her sutures. Ugh. So not looking forward to that. I think this will be a two parent job.

I Got the Shoes

Well, I have the shoes. I went to a store that has sales people who really know what they are doing when it comes to recommending and fitting you for shoes. I explained to the very nice lady who was helping me exactly what I was looking for and the above are what I got. I had no idea real running shoes cost that much but I figure if I am going to give this running thing a fair shot I need to invest in shoes that can help me do it. Things I am already learing from this running experiment...you must get shoes that are a 1/2 size to a full size larger than what you normally wear. Ok. Had no idea why the shoes she was having me try on seemed so big but she explained you want them to fit snug over the top and instep but loose in front so your toes have run to move around and your foot can expand. Sounds good to me. Makes sense. She tried to sell me some that were pink...I politely declined those.

The Honeymoon

We have officially entered the pre-Fontan honeymoon period with Carolena. She is doing very well cardiac wise and will have little cardiac oversight or intervention over the next year, give or take a few months. Of course, C must behave. She needs to continue to stay healthy (no sickies), gain weight, maintain her sats and reach her "normal" baby milestones and not yank her g-tube out.

The emotional high of having a "break" from all of the appointments and knowing we are now in a holding pattern, with C dictating the next step, is incredible.

C saw her EP cardiologist on Jan 28 and received a glowing report from him. Her arrhythmia is continuing to remain calm with her current medications. She continues to have slight increases of each medication based on her weight gain but there are no other changes. He does not need to see her back for 6 months.

She then saw her regular cardiologist on Feb 3. He is really the doctor who is managing her care and continues to monitor all of her structural defects. C had the full work-up with echo and all. She is really starting to not like the echo at all. In the past she has been pretty tolerant but not last week. She got about half way through and totally lost it...and all of her feed,all over the table and floor. Ugh. Fortunately her cardiologist was able to see enough of what he needed from the amount the tech was able to record. He is really looking at the amount of leakage from her valves (minimal...he cannot even hear it when listening to her...yea!) and making sure the connection between her confluence and atria (allowing the blood to flow to and from her lungs through her pulmonary veins) is remaining clear and unobstructed. The obstruction of the pulmonary veins due to membrane growing around the surgery site of connection of confluence to atria is what led to her 2nd OHS last May. He was so pleased with Carolena he as well does not need to see her for 6 months.

To say I was stunned is an understatement.

C has a single ventricle with heterotaxy. Medically, she is not supposed to be doing so well that we can go 6 months between cardiologist visits. But she is. And I am beyond amazed and ridiculously grateful and thankful.

But just like a real honeymoon, there are always little issues that get in the way of your enjoyment and complete relaxation. The airline we were flying to my honeymoon conveniently left my suitcase at one of the airports along the way and I did not have any of my clothes for 3 days of a 7 day honeymoon. Awesome.

As well, C is still vomiting (as evidenced above with her latest experience with the echo) and is still not eating anything voluntarily. Oh could I go on and on and on. The feeding issues are the absolute worst. We have dealt with some pretty bad stuff so far. 2 OHS's, a deadly arrhythmia, possible heart transplant (and lungs too!), effusions, unexplained fevers and ridiculous medicine schedules but nothing, and I mean nothing, compares to the absolute sanity sucking, total morale defeating want to drive you crazy and pull all your hair out then the stress of trying to get your medically fragile child to do the most basic instinctual thing of all....eat. I could literally write pages about how this is completely sapping all the joy out of knowing how well C is doing right now. C has had every test(some two and three times), seen 5 different GI doctors, I cannot even remember how many speech pathologists and yet she still will not eat. She shows interest in food. She will put anything and everything in her mouth and even some food items but will not eat. She does not show us any indication of ever being hungry or desiring food. She does not drink anything at all. We keep working with but to no avail. Nothing is working. Not the tests, the GI doctors, the speech pathologists. Here is the thing that drives me absolutely batty...I know several other children with single ventricles and Glenn shunts with lower O2 sats and have been ventilated much, much longer that C ever has and they eat fine. Just fine. May need some supplemental or calorie boosts here or there but they voluntarily eat and drink. Showing interest and desiring the bottle/sippy/cup and food. Oh my. Seriously.

Unlike the luggage experience on my honeymoon in which there was an eventual happy ending, we are far from the happy ending with C.

Kevin and I are seriously considering finding the best GI people and feeding programs and doing an eating boot camp with C. I cannot even tell you how defeated I feel that C went from getting her g-tube as supplement purposes only, to now being totally g-tube dependent. We just want answers. Something. Anything to put us on the right path for eating.

Can you just feel the stress?

Well, I have decided I am going to try something new (for me at least) and do my best to turn all this frustration, anger and stress into something positive. I have started to exercise again and I am even attempting to learn how to run. Yes, I am not kidding. And right away I have learned many things from my first attempt at running yesterday. One, I really need real running shoes. Two, I am a horrendously bad runner. I am bad in the way of barely picking my feet up off the pavement, shuffling along, big butt bouncing (and not nicely), embarrassing to watch but cannot look away bad. Three, I need real running shoes. Four, I need a coach or someone who can help me learn. Five, I need real running shoes. Maybe one day I will look back at this and laugh...oh how funny was I, hahahahaha. But I am not feeling it at this point. Attempt number 2 will be tomorrow, maybe I will let you all know how it went.

Something else new I am trying (you know, to relieve stress) is joining a women's group. My counselor periodically puts these together for women to come together and do group counseling. She has been suggesting I do this for about 2 years now and I have resisted. I am just not a good sharer. However, I am at a very low point and really feel I need to make changes in myself and in the things I do. My first attempt at the women's group was no where near as bad as my first attempt at running, so maybe this will stick. Mostly I joined the women's group because honestly, I have no close female friends. I apparently have issues when it comes to having female friends. I am hoping this group will be able to help me see where I am wrong and how I can change things to be a better person so women will want to be friends with me. Don't get me wrong, I know lots of women. And I have lots of friends. But I do not have the BFF friend. The one or two ladies who you share everything with. Who know you better than you know yourself. Who you can call on a moments notice and without saying a word they know what is wrong. BFF's who want to spend time with me and do things with me. I envy all the women I know who have this and I am searching for the reasons why I do not have this. I am lonely. And I have decided I need more. A lot more.

I know the next question will be, where do you find the time. Well, I don't really. I am just pushing things around and shifting other stuff. Like robbing Peter to pay Paul. I am hoping this will all lead to a happier mama, happier wife and happier friend. I am over being stuck in a rut. I have way too much stress with being a full time mom, having a full time job, taking care of the house, the finances and in general being expected to pull off graciously and beautifully being the all powerful Supermom.

The changes, the wanting to be different, sound pretty self serving. In a way it is. I will be much happier if I can see progress in myself. But I am also doing this for these wonderful, special people too.













I put all the pictures at the end so you have to read my whole, long, boring post before you realize there are pictures here too! My husband deserves to be here too, but he conveniently does not ever let me get a picture of him.

Prayers are Working

Carolena is doing well. Very well as a matter of fact. Her eating is still atrocious and she is still vomiting a lot but her heart...her heart is doing well.



The past few weeks we saw the GI doctor and both of C's cardiologists.

As usual, the GI visit was useless and unhelpful. The doctor told us C's issues with eating are behavior related. Ummm, ok. So C waking up in the wee early hours of the morning from a sound sleep and puking everywhere is a learned behavior? Really? It has been a really long time since I went to medical school (you know, like never) but I really don't think my 15 month old daughter is saying, yep, now it is time to wake up and puke everywhere just so mom and dad have to wake up with me. Not seeing her retching and dry heaving as a conditioned learned behavior to attract attention either. Oh well, again, what could I possibly know since I do not have an MD after my name.



C is back in feeding therapy. Well, kind of right now. I am still waiting on the therapist to do her final report and then we will see which type of services C will be getting. I am going through the Early Steps program as my insurance does not pay for feeding therapy. Early Steps is an early intervention program for children birth to 3 years old who qualify based on medical necessity. C has been seeing an infant/toddler development specialist now for the last month and she is the one who called in for a more advanced speech/feeding therapist to help with C's eating. Of course, both ladies are still thinking the same as us, C does have some behavioral refusal not due to aversion but due to some medical issue with her guts. So, we will see how much further we go until we are all insane.

End of October C saw the electrical cardiologist for her 3 month check. She had a 24 holter monitor and then another ecg (ekg) at the office. The EP doc is very happy with where she is. He is seeing no arrhythmia activity on the holter and thinks the current medications she is on are doing a fabulous job controlling the arrhythmia. I would really have liked to hear him say that he does not think she needs the meds anymore but I can't always get what I want. I did get a small reprieve though in that the EP did allow us to cut back to giving C her one med 3 times (every 8 hours) per day versus the current 4 times (every 6 hours) per day regimen she was on. Having to get up at 12:30am to give her meds every night was really getting old. At least now we have one fewer sleep disruption...yay! The course for the EP is pretty much status quo until she is ready for her Fontan surgery between 2 and 3. He did say that once she gets to the time to do the pre-Fontan heart cath he would consider taking her off her meds. He wants to get the most accurate info during this EP study during the cath. Since this will not be happening for at least a year, I will not worry about that right now.



Even with the good news from the EP doc I was still really worried about C's appointment with her regular cardio yesterday. With the slight schedule change in C's meds and her being sick on top of everything I was just totally freaked out (and exhausted). C got some tummy bug that had her vomiting (even worse than usual) and diarrhea so bad for almost an entire week. I at first was not sure if she was sick but then I got it too. And my mom. And my boss. I guess C is just a little giver, what a sweet child she is. Anyway. Fortunately she did not run a fever (can trigger her arrhythmia) and with her g tube we were able to keep her hydrated. Otherwise she would have been in the hospital. Poor baby felt so bad. She would just stop in the middle of what she was doing and lay down. So not like her and also indicative of heart failure (taken in conjunction with lack of eating, increased vomiting and general lethargy). Nothing is ever easy or straight forward with C. With her feeling so poor and me being sick two weeks in a row and my car still having issues and Kevin being out of town for the better part of two weeks...my world was really not right.



But, as with all things, prayers are bringing us through. As I already mentioned, C saw her regular cardio yesterday (does all the structural/defect stuff). She got a great report from him. Holy cow! According to her cardio she is doing awesome. Her echo looked great, her function is good, her flow is good, her confluence (the pulmonary vein stuff) looks good. He was amazed at how big she has gotten and just giddy with how right on developmentally she is. So far she continues to be on the top end of the spectrum for babies like her and we are beyond blessed and grateful. We do not need to go back (unless C has issues) for another 3 months. Hurray! He cleared us to travel and said "we absolutely have to go" and see all my family in Alabama. Of course we will be on super, heavy duty hands off, no sickies, no holding mode but at least everyone will get to see her. For that I am truly happy. Her cardio also delivered some other good news for me personally...he said he likes to have the Fontan done around 2 1/2 to 3 years of age (on the older end of the spectrum). Even though C will be more aware I am really ok with her being a littler older and for purely selfish reasons I want her around for all the holidays next year as well. If they did her Fontan right at 2 (August) she would more than likely miss all that stuff. I will not go into too many details but the Fontan will be extremely hard on C. There will be a lot her body has to do to adapt to, especially the artificial circulation, and there are a lot of kids who just don't make it. But, right now, C is doing remarkably well and we are going to spend the next year just being and doing.

It's Been Awhile

There are so many things I have missed posting and wish I had done at the time of the event, but life has been so ridiculously crazy I never have time to do anything.

The latest and greatest since C's birthday:

1) We had an awesome party for C. So many friends and family were able to come and celebrate the day with us. C had a blast seeing so many people. I am not too sure what all she was thinking but at least no one was coming at her with anything sharp, pointy and possibly painful. Yay! She did manage to get the icing on her cake all over herself without getting one bit in her mouth. Most post some pictures because she truly looks like she took a bath in pink frosting.

2) We did get to go on vacation right before C's party. We took a week and went to the Keys. The boys had an awesome time as usual...we snorkeled and fished and went out on the boat. They just love having everyone together all day and no stress. Poor boys, having to live with us and all our stress. Love being able to take them away for a bit and let them just be "normal" kids.

3) I was in a car accident on August 5. Yep. Great timing. And guess what, my car is now back in the shop for the 4th time since being repaired initially. I really, really, really detest my insurance company. My car was damaged because some guy thought it would be just fine for him to make an illegal left turn on a red light and plow right into my car. Lovely. I have been fighting with both insurance companies since August and still do not have my car back and repaired correctly.

4) Kyle turned 7 in September. We decided to give him a choice this year on what he would like to do. We let him choose between having a party or asking a couple of his friends to go to lunch, a movie and the toy store. Kyle chose the movie option. Later that night he told me it was the best day he has ever had...so I guess we hit the right celebration for him.:)

5) The boys are back in school and doing well. Some minor glitches here and there but overall they are loving school. I have teacher conferences today with both boys teachers.

6) Kyle is now doing cub scout and tennis in addition to go-karting. Todd is also doing tennis. Between all the kids activities and work stuff and football games and C's stuff we never get a break. We are constantly on the go. I feel like Kevin and I rarely see each other as we rarely do anything together as an entire family. One of us always has to stay back with C as she cannot be out and about too much.

7) We lost the nurse who was taking care of C at home a couple days a week so she is now with me at work full time. We are trying to find someone new but with all the requirements necessary and insurance not paying for anything like this we are having a hard time finding a replacement. Has made it very interesting for all of us. C is now 14 mos old and is very active and mobile and still CANNOT be in a daycare of any kind. And I absolutely HAVE TO HAVE my job. Rock meet hard place. My boss is awesome and very accommodating but eventually we need to make a decision on where we go from here.

8) Kevin's work is still shaky so we are all holding our breathes and hoping things change after this election cycle. He is working way too many hours and has way too much stress and no outlet in which to re energize himself. We really need there to be more hours in each day just to get a break.

9) C did see the GI doctor again in beginning of October and we are still getting the same answers. GRRRRRRR. We are back in feeding therapy but getting the same finger pointing, running in circles crap. So darn frustrating. She also saw the electrical cardio last week. As far as the electrical cardio is concerned she is doing great. The medications are working and keeping everything in check. Her 24 hour holter looked fantastic, nothing to report and her office ecg looked good too. He did say we will be facing a decision before her next cath on whether to take her off the meds prior to the cath to see if they can induce the arrhythmia during the electrical study. If they leave her on the meds and are unable to induce the arrhythmia then they cannot be 100% certain that it is gone. So, that will be super scary but not something we need to do right now.

C is currently puking up at least 3 times a day. She only eats 5 times. Great ratio. But she is still gaining weight. She is currently 20 pounds, 3 ounces. She is back on the charts...hurray! She is just the sweetest thing. Follows her brothers everywhere and is in all their toys. Bless their hearts, they are very patient with her and pretty much let her do what she wants. Sometimes I get, "mama, can you come get her... PLEASE????" but not very often. She is crawling like crazy, standing up everywhere, taking a few tentative steps while holding on, babbling like crazy, and pretty much doing all the things a "normal" baby would be doing...all except the eating. She is now on Vital Jr. and we have tried to eliminate every thing she may be allergic too. We keep trying to "fix" each little issue in the hopes that fixing all the little issues will eventually add up to her tolerating and eating all by herself.

I will eventually get some more pictures up here as well. Have to show how big our little C is getting.