Crushing News in Oct. 2008 ... Blood Clot In Baby Wyatt's Heart Not Gone

You go to the appointment, hoping, praying that the specialist will say what you what him to say. You've given the needles, you went to all the appointments and stroked your baby's soft sweet smelling hair as he howled with discomfort while being poked, prodded and analyzed. You've agonized over each breastfeeding session, pushing his limits, praying he'll take more so he will grow, therefore making the clot smaller in relation to his heart. And you've prayed that his little body that's been through so much will have absorbed the clot and it is gone. So how do you feel when the specialist looks across the table at you with all the print outs, graphs and numbers in front of him, telling you that it is not gone. That it never changed in size. That there is an indication that the electricity of his heart is abnormal. And if left as is, he will die.

How do you feel?
Crushed.

I so wanted to hear this past, present and looming nightmare was gone. My hopes were high that October morning when Wyatt and I went up to the pediatric ward at the Dr. Everett Chalmers Hospital. We've been waiting for this day since we were discharged from the NICU. The chance to meet with the heart specialist from the IWK Hospital Halifax, Nova Scotia. We went through the usual weight and measurement checks. One week prior, Wyatt had an electrocardiogram (ECG, EKC) done. He had another done while waiting for the specialist.

The specialist had his own technician come Fredericton so that he could be sure the echo cardiogram or ECHO was done the way he normally has it done. Wyatt had had this test done in the NICU and he really does not enjoy it. This time I had a bottle of milk ready to use as a diversion tactic. The technician was a really nice lady who chatted with us, cooing over how big and handsome Wyatt was. Wyatt, being his usual self, flirted something fierce with her! LOL.

I distracted Wyatt with his bottle while she started placing the wires on him, trying to act as calm as I could for Wyatt's sake, but inside I was so nervous and excited. I was sure the clot was gone! It had to be. All those blood thinner needles I gave him had to have worked.

Finally, the sort of fuzzy image of Wyatt's heart appears on the monitor next to Wyatt's bed. And the first thing the cardiac technician says? "Wow, that's the biggest clot I've ever seen."

Stunned, I watched her map the image, taking the measurements and entering data. The specialist comes in and he points out the shape of the clot in Wyatt's heart and down his aorta. It was horrific and fascinating at the same time; I had never actually seen the clot before.

The specialist took the data and advised me he needs to review it first. I'm told to wait in a separate room with Wyatt. At this point, I was trying to keep it together because I know the doctor will not tell me everything if I am falling apart. I've been down that road before. So I wait.

He came in and spread all the print outs on the table. Wyatt's clot is massive. He actually did not have the measurements from the previous NICU echo but it didn't matter. I am told a "clot team" in IWK will have a conference on Wyatt to see how to proceed and that I should be able to stop the Lovenox injections. This shocked me and scared me. What if the clot gets bigger? When I asked this, I was told to continue the injections until Dr. S. hears from the clot team.

And then the specialist pulled out the stripe showing the peaks and valleys of Wyatt's EKG. There was a problem. The test matched with the prior one, showing a pattern that indicated Wyatt may have arrhythmia. This was completely new to me. What could this do to my son? He made reference to young adults and children that have heart failure while playing sports. He tells me so much information but at this point I was so overwhelmed that it is washing over me. I'm nodding my head as he talks, trying to look calm but all I want to do is grab my sleeping son out of his car seat and hug him tight to my chest.

At the end of the meeting, I had to ask. "Can this arrhythmia problem kill my son?" The specialist hesitated before answering me. Yes, if left untreated. I thank him for his time and leave, crying my eyes out as I drive home.

Hurray!!!! No More LOVENOX injections!

We just got word today from Dr.S. who spoke to the cardiologist from I.W.K. to quit the Lovenox. You cannot guess at how happy I am to stop these injections!!! Poor Wyatt, he is looking like a very sore little pin cushion right now.

But it is also very terrifying. The blood clot in Wyatt's heart is still there and it is massive. The Lovenox was to keep the clot from getting bigger. The theory was that as Wyatt grows, the clot would get smaller in relation to his body and eventually be reabsorbed by the body. Now our family is wondering what will happen next without the Lovenox. We are meeting Dr. S. in a couple of days for a consultation to see what the next step will be.

You might be wondering what Lovenox is. It is a low molecular weight heparin, a costly drug that thins the blood. To quote Wikipedia, it is:

"Enoxaparin is a low molecular weight heparin manufactured by Sanofi-Aventis. It is marketed as Lovenox or Clexane. Enoxaparin injections are derived from the intestinal mucosa of pigs. Enoxaparin is used to prevent and treat deep vein thrombosis or pulmonary embolism, and is given as a subcutaneous injection (by a health care provider or the patient). Its use is evolving in acute coronary syndromes (ACS)."

Basically, I'd have to pinch a fatty part of either Wyatt's arms or legs, insert the needle at an angle and press the plunger all the while my little guy is howling and writhing in pain. Not fun. We were told wayyyy back in August 2008 (notice the almost full sharps container) that Wyatt should become accustomed to them and would barely flinch. HA!!! Also notice how strong of a grip my husband has on Wyatt. Needless to say, Wyatt does not like needles. Neither does Mom and Dad.

The worst part about giving the injection as a parent is the fact that you are hurting your baby, even though you know you are helping them. Moms and Dads who must give needles too, you folks are very brave people. I'm new to this, and I can't tell you how many times I dropped the wretched thing or stabbed myself with it. Of course, the needle must be absolutely sterile, so into the sharps container it would go!

This definitely isn't an experience you'd soon forget, though you'd like to. Here are my top two needle moments I'd like to forget:

1. Lovenox crystallizing in the shaft of the needle, so when you inserted it, you could not get the plunger to press down to give the needle. Wyatt absolutely needed this medicine, so I'd have to stab the poor little guy again with a fresh needle and hope this one would work.


2. Having a panic attack just as I was pushing the plunger of a second needle. The first one malfunctioned like how I mentioned above. My husband put that still full needle in the sharps box. Half way through administering the dose of the second needle, I couldn't remember if I gave Wyatt part of the dose from the first needle. I yanked it out and tore open the sharps box, frantically digging through the old needles to find the loaded needle while my husband looked on with horror. Crazy? Maybe, but I seriously thought I gave Wyatt too much of the blood thinner. THAT would be very bad. Ah, panic attacks. I'm new to them too. Don't you just love them? sigh

My poor little sweet pea.