Normal is pretty much a textbook misnomer. Is there such a thing as a usual or expected state? Of course there is, however, there are infinite normals. Your normal is unique to you. The funny thing about normal is its ability to transform itself and take on a new form. It's an unstable phenomenon. Its foundation is built on shifting sands.
As events, circumstances, interruptions of fate, tragedies, happenstance, and other interventions occur, normal reinvents itself. The alteration of one's normal gives birth to a new normal.
Our precious Zoe Madison brought with her, into our lives, a new normal. A new normal filled with twice daily medication administration, daily vital sign checks, bi-monthly cardiology visits, monitoring, obsession over food intake, and a myriad of worrying.
The added attention to Zoe provides Emerson with unsupervised time to work on her arts and crafts (yikes!):
Zoe's most recent cardiology visit was moved up a couple days due to a recent vomiting spell. On nearly a half-dozen occasions in the last week, during or after a feeding, Zoe has projectile vomited large quantities of milk.
At the visit, as is custom, Zoe underwent a blood pressure check, EKG, and ECHO. After the tests, the doctor relayed to us that Zoe, and her heart, looked good. Precisely the news we were looking for.
Every cardiology visit is fraught with nerves, anxiety, hope, and fear - all at once. The collection of these emotions represents our new normal. Granted, we have the same joy, excitement, and deep love with Zoe that is present with Emerson, but Zoe's condition carries with the known risks of loss and thoughts of worst-case scenario. Not that we don't fill ourselves with hope for Zoe's path, but the reality of her condition is ubiquitous.
At the recent visit, the cardiologist switched Zoe from Zantac to Prevacid, in an attempt to quell her reflux and vomiting. He also reported that her ECHO looked good and there was no need to do a repeat ECHO at the next visit. Waiting for the ECHO results always generates a recipe of fear, worry, anxiety, and hope. But receiving good news is like an injection of optimism, which immediately overpowers the uneasy pre-ECHO emotions.
After leaving the appointment and going about our day, several hours later we received a call from the cardiologist. He said he reviewed the ECHO in more detail and spoke to Zoe's cardiologist in Philadelphia and wanted to give us an update. First thought - this can't be good! What could possibly be the problem? These and about a dozen other questions ran through our mind in the split second pause between the doctor's sentences. He explained that the velocity of the blood flow through the heart is higher than normal. This is an issue because it can signify a blockage or narrowing, also known as coarctation, of the aortic arch. A coarctation of the aortic arch can cause the single left ventricle to become overworked, thereby increasing the load within the already fragile shunt. With coarctation of the aortic arch, in addition to increased velocity, symptoms can include increased blood pressures in one or more limbs, inability to palpate pulses in the lower extremities, or symptoms of heart failure.
Fortunately, Zoe did not display any symptoms other than the increased velocity. Therefore, neither cardiologist is too worried, however, they agree that we need to monitor the issue closely. In order to do so, an ECHO will now be performed at each cardiology visit until the second surgery in mid-September. If it were to develop (now is the time to knock on wood), treatment for coarctation of the aortic arch includes a catheterization with an angioplasty, where a balloon is inserted into the arch and blown up to expand and eliminate the blockage. Let's hope we don't get to that point.
On Friday, we had an appointment at Phoenix Childrens' Hospital for an ultrasound of Zoe’s clotted left leg. Her left leg developed clots in the iliac and femoral arteries when she had her cardiac catheterization in Philadelphia in late-May. CHOP wanted a follow up ultrasound to determine the integrity of the of the arteries, primarily for future catheterization procedures. Zoe was a trooper during the ultrasound, although she did manage to land several solid kicks on the ultrasound technician’s arm.
The radiologist spoke to us afterward and said the left iliac and femoral arteries remain occluded, but this won’t affect the leg itself because several collateral arteries developed which allow for blood flow through the leg. At this point, the occluded arteries will never function as intended and will probably not allow for another catheter procedure at that site.
The radiologist also indicated that her femoral vein on the right side, where a catheterization procedure was also performed in late-May, appeared to be partially occluded. As with the occlusions on the other side, however, the blood flow also continues to be properly directed due to the development of collateral blood flow. This shouldn't affect Zoe’s well being, but again could complicate future catheterizations.
For the next couple months the focus is on getting to the second surgery, the Glenn, which should occur in mid-September. Until then, we continue to keep a watchful eye on Zoe and hold our breath. Her weight fluctuated a bit this past week and the cardiologist suggested he might like to hospitalize her in order to insert an NG feeding tube in her nose as a way to increase nutrition. He indicated that he’s only had one patient who made it from the Norwood to the Glenn without a feeding tube. Our goal is to give him a second patient, so we’ve been working hard trying to get Zoe to eat as much as possible. The obstacle is her reflux and occasional vomiting. Every bottle we feed her carries with it some mild stress, as we constantly count the amount of liquid intake to make sure she hits her daily quota, at the same time hoping she doesn’t take in too much and vomit.
We also worry everyday about any change in her symptoms, i.e. increased fussiness, increased bleeding from her daily Lovenox injection site, increased oxygen sats, decreased heart rate, increased sleeping, decreased sleeping, labored breathing, vomiting, etc… In a child without a congenital heart defect, many of these things would not be a concern or out of the ordinary. In Zoe’s case, however, with her HLHS, we need to be overly sensitive to all changes in symptoms, particularly as we are in the inter-stage period between the Norwood and Glenn.
Everyday is stressful and carries the thought that Zoe’s heart condition could take her at any time, which feeds the stress. We're not complaining about this as the joy Zoe adds to our family makes it more than worth it. She is strong and inspires us everyday.
Although we are still adjusting, we love our new normal.
