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.
