Lauren has a favourite bedtime book about a Mommy and baby bear who go through life together and share all sorts of experiences. At one point, the poem reads, "Paw in paw, we will greet every morning. Paw in paw, we will meet every day." Every night, when I read that, I think about Lauren's ongoing medical issues and I realize that it will just be something that we have to work through together every day. As silly as it may seem, this little board book reminds me at the end of each long day that we can't deal with more than what we are handed each day and to just take it a moment at a time.

Today was a big appointment at the hospital. There was so much that we hoped to learn. Unfortunately, we do not have all of the answers that we hoped to have.

Lauren was mildly sedated with a drug that essential turned her into a baby drunk. I now know that when Lauren chooses to start drinking, she will be the type who loses all inhibition. Usually Lauren doesn't bite, or just bites lightly, but at one point I had to try to get hospital bed paper out of her mouth (obviously) and she chomped down so hard! The word "no" definitely wasn't computing.

Lauren's Echo was smooth enough. She spent the whole time watching Tinkerbell and holding on to the technician's finger. Every once in a while she would look at me, register that I was there and get a dopey smile on her face before Tinkerbell took her away again. 

We had to wait quite awhile to have her pacemaker information downloaded and the sedation started to wear off. Lauren's appointment took up her nap time so she was not a happy camper. She turned into a bit of a cranky baby drunk. The only thing that seemed to make her happy was her apple juice and her baby duck (which apparently she can jam right into her mouth and might have to be put away until it is no longer a choking hazard).

Since her last appointment, Lauren's pacemaker has gone off 205 times. I am so thankful that she has that in! It seems like a huge number but we are pushing more solid food on her and the pacemaker is still only being used less than one percent of the time. Still, I'm not going to lie, when I heard 205 I wanted to puke. 

I've written about our cardiologist, Dr. Escudero, before but here's a recap. She is lovely. She helped keep us calm when the worst was happening and she has a very gentle presence. At these appointments, she has a knack for keeping things low key. In the past we have usually heard, "There seems to be slight improvement." We have heard this so much that I nearly fell out of my seat today when she said that there was "a dramatic difference." She showed us Lauren's early echos and her echo from today and there is a huge difference between the amount that her ventricle was contracting in September (i.e. almost not at all) and the amount that it is contracting now (it looks like it is finally moving!). Dr. Duncan (the lead cardiologist) told us that her ventricular function has improved to almost that of a normal child, which is something that almost never happens! I literally picked Lauren up, held her over my head like a trophy and cheered. Now that I think back, I'm perhaps a little embarrassed but that is a huge positive! To come from your ventricle looking, for the most part, mostly full of dead cells, to a ventricle that is almost like a normal ventricle. Wow! There is still a ways to go, but we're getting there. 

Unfortunately, that great news had to be tempered with some not great news. There is an obvious kink in her aorta. It is unclear whether kink is something that runs all the way across the aorta or only part of the way, but either way, it is there. To correct that, Lauren will need another surgery. The question is, when? In the next month, Lauren will go for a CT scan to determine just what the kink looks like. After those images, there will be a better plan going forward. If it is not that bad, the surgery will wait until it either gets worse or she gets bigger. If it is bad, surgery will have to be sooner rather than later. So, now we wait again. We keep putting one foot in front of the other and continue to meet the challenges of every day.  

Thank you to so many people who prayed! Please keep praying. I'm still believing in miracles to come. After all, we got miraculous news today. And there is no such thing as too many miracles. 

1 comment:

  1. So excited by the good news but yes it's tempered by the future need for surgery. Will keep praying. Like you said, there is no limit on miracles!


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