Whirlwind Day - Learning About Taking Care of Gwen at Home

Today we began to learn about what care Gwen will need when we leave here. This week we will take at least three classes. Tomorrow we will take infant CPR. When we leave, they are telling me she will keep her feeding tube (more below). Also, we will need to be super-hyper vigilant in protecting her from illness - "heart babies" and the common cold don't mix well at all. A cold will cause her to have a serious respiratory illness requiring hospitalization. Congestive heart failure is another risk factor we need to be ever careful to watch for any signs.

I've been picking the brains of each nurse and fellow or resident to learn how long they expect to be here. None of them give a straight answer - but we know that we could get little warning (kinda like we did when they moved us to "step down" and we know it will most likely not be before April 2nd.

We are still waiting for her tube feeding to be condensed to bullious feedings where her tummy is left empty after being fed for a half hour (right now she is being fed for two hours at a time). At the same time they are adding a caloric supplement to the breast milk she is being tube fed. They want to give heart babies all they can to help them grow. Heart babies struggle with growth because their heart is using so much energy (Gwen's is enlarged due to the extra work required all her life in utero - so even as it is "fixed" it is still a hefty muscle - at least right now that is my understanding as to why she is at risk for "failure to thrive").

Until she takes in her feedings in a half hour time period they will not try a bottle or see if she can swallow by putting milk down her throat. They will let her "practice" nursing - so far, she hasn't got the knack yet. Nursing is actually far better for her than a bottle as it requires far less work on her part...so I really hope she can figure it out. They say heart babies sometimes have a difficult time because they didn't learn it before surgery and they don't have the association with being hungry and nursing - and I am sure it doesn't help that when she "practices" her tummy is already full. She takes a pacifier very well, hopefully she isn't too used to that. They are trying to tell me that is not the case, but I can't help but wonder.

It really has been a whirlwind of a day as we learned all these details. At first our nurse said she may or may not need oxygen and a feeding tube. Later in the day the nurse said "she would almost bet a million dollars Gwen will be on a feeding tube when we leave." I need to inquire why the sudden sureness about it...I don't know why I didn't ask then and there. Also, we were given the impression by the fellow that Gwen will not be on oxygen. Again, I don't know why she seemed so sure about that. Things are all a bit confusing right now.

As far as her health, the results of blood work and her x-ray show all is well - kidneys are leveling out as they want them too after surgery, lungs are open, blood levels of electrolytes are steady enough. She will have an echo-cardiogram tomorrow - a first since surgery that they will see just how the heart is functioning. All indications based on her clinical signs are that it is working quite well. It will be great to have that confirmed.

Tomorrow Myers and I will have blood drawn. It appears that she has some random duplication of some gene. We are told they don't think anything of it - that they are finding this type of thing occurs in just about everyone and that these don't seem to be of any significance. They will check us to see if one of us also has the duplication and if we seem otherwise normal (no comments please) then they will be settled and done with the situation. If we don't have it then as I understand, they still find it insignificant and don't think it is anything important.

At the same time the hematologists will take our blood to help confirm that her scary, freaky, lack of white blood cells at birth was indeed a type of autoimmune reaction caused by one of us.

Finally, we will also be contributing our blood to science for research being done on the genetics heart defects.