A Good/Long Day

We had some great news today, after meeting with the Cardiologist (our amazing Dr. Fruitman), she informed me that the surgery is NOT going to require open heart but can be done through Squeak's side/ribs.  That means that our recovery time has been cut down to one week (on average) from one month that we were anticipating being in Edmonton.  Being that the malformation is more to the back side of the heart they can access it from his left side through his rib cage.  Much less invasive and a much smaller incision, yay.  The thought of one week in Edmonton is a whole lot less stressful to me (than the prospective of a month) after which he'd then be transferred down to Children's here in Calgary.

After spending time with Dr. Fruitman (and asking her a thousand questions), I am feeling confident about the surgery, it is a fairly routine procedure for the Cardiology team.  She is confident that he is strong enough to endure the procedure and is thinking that it will most likely happen now before Christmas.  It is my understanding that they present their cases to Edmonton each Tues and those cases are scheduled for surgery by urgency for the following week.  She mentioned that they may actually not present Braeden until next week depending on how his echo cardiogram presents tomorrow.  Braeden's DA (ductus) is almost closed now and he seems to be tolerating it all right.  They will be keeping a closer watch over the next few days because his blood pressures are getting further apart (meaning his blood pressure on his arm verses blood pressure taken on his leg), which is a sign of closure of the ductus.  The decision to medicate him to re-open the DA is still up in the air for now.

I also got the pleasure of sitting through a 20 min SVT episode with Dr. Fruitman tonight.  That was not good for one's Mommy Bear or one's anxiety levels.  Dr. Fruitman is wanting the nurses/Dr's to let Braeden ride out the SVT's for 10 mins before intervening with the ice or drugs.  Her reasoning (aside from being the smart Cardio boss), is that when he is home we won't necessarily know if he is in SVT or not and she needs to know what they are looking like for him from here.  She is confident that because he is now (thankfully) remaining stable throughout these episodes that he'll be able to tolerate a run of up to 1/2 hr.  He is certainly exhausted afterwards but otherwise not any worse for wear (I believe it, really, maybe).  The hope is that the SVT's are something he'll grow out of (70-80%) of kids do and for the meantime they will keep him on the meds till around six months of age and then wean him off from there while seeing how the heart responds.  I can honestly say that if she'd not been present through the episode I would have been a whole lot more freaked out.  As it was I think both Amber (our great nurse that was on and has never had to wait out an episode) and I both had our own heart rates of 300+.  My hands were on him the whole time and I could easily feel his heart under my finger just flipping the whole time.  He is otherwise non-remarkable, from an outwards appearance you really cannot tell (if he wasn't hooked up to a screaming machine that is).  Dr. Fruitman was very calm, not at all concerned while observing him. I honestly think he did it on purpose to train us while Dr.  F was present!  As thankful that I was that she was present, it is hard to remain calm when you have six nurses/Dr's around working on/with your child.

The crappy thing (sorry Braeden, no pun intended) that we are dealing with now is the presence of blood in B's stool.  It showed up yesterday afternoon and persisted through two diaper changes I did with him last night.  The xrays were somewhat inconclusive yesterday, they could tell there were changes in the gas patterns.  It is very common for preemies to have necrosis in their intestines (an infection that leads to tissue death in the lining).  This leads us to the ever increasing importance of breast milk for preemies as the EBM (expressed breast milk) coats the lining of the intestines and helps to avoid this issue all together.  As I am still not producing enough EBM for more than one or two feeds in a 12 hr period (he is fed every three hours), he is being supplemented with formula, (NO guilt here, at allllll!).  After talking to the nurse and thinking it through last night, we are both convinced that it is more of a reaction to the concentrated formula rather than actual necrosis.  I had an issue with both T and Ry when they were supplemented with the formulas that they couldn't tolerate the pre-made formulas, only the powdered.  As it is, they have put through a NPO order for Braeden as of the 3 am xray this morning which means no food for the next 5 days.  Can you say grumpy/miserable baby?!  He is getting all the nutrition he needs via is PIC line but it isn't the same as someone filling your belly every three hours with warm milk.  So fingers crossed that it is simply an intolerance, not something more serious.  They are talking about a change in formula when food is reintroduced and possibly taking me off dairy too while pumping, so much for 'comfort' ice cream cruel world!