Quinnie August Health Update

Before we launch into Quinn health update, let me just say in the past week I was introduced to te beautiful creation of pretzel M&M's. And oh, my, lord. Wonderful.

In the same week, I also have had to come to terms that I am allergic to the deliciousness that is pretzel M&M's. Seriously??? Who is allergic to those??? This girl. I am not the sharpest knife in the drawer, so it took me a few days to figure out why the horrors of teenage acne had returned around my mouth and my hands and eyes itched uncontrollably.

Conveniently, the symptoms would start about 10 minutes after R&Q's late night feedings --- which I always started with a handful of M&M's --- you know, for energy and stamina. Anyway, I am now sitting here typing this blog post with a green "cooling" mask on my face, which conveniently matches the green bed I am sleeping in and the green shirt I am wearing. I like to coordinate.

And why I felt compelled to start off this blog with the boringness that is my allergic reactions, who knows...delirious perhaps? Actually, I don't even have tiredness or delirium to blame this on --- the babies have been sleeping very well in the past week or so. Well, for 11 week old preemie babies, they are sleeping well... last night we had a stretch from 8:30pm to 3am and then again to 7am. Not bad. I must thank my baby whisperer for assisting us on getting them in a better schedule. Yes, we had a baby whisperer, aka night nanny, for the past 2 weeks. I feel extremely spoiled to be able to say that --- but it was worth every dime. When Q came home, I felt very anxious about her gaining weight and ensuring she got the calories she needed to gain weight - that meant that she needed to wake up every 3 hours at night to eat. And balancing that with another infant who was starting to sleep longer at night --- well, it was just a tough go. So we were blessed to have D come stay with us at night and by the end of it, the babies were on a much better (and manageable) schedule. And if I was rich, I would totally have her for another 2 weeks. But that's neither here nor there...

Anyway - to Quinn... we saw our cardiologist last Monday for a little check in. They did a weigh in, a chest xray, and took a pulse ox on their machines. (I must say that Q blew me away with how GOOD she was the entire time. She was pretty much a complete angel --- she must have recognized the smell of the hospital and felt right at home, ha!)

And then we met with the doctor who seemed overall pleased for where Q is at the moment. Her vitals have remained stable (in the 86%-91% range). Basically,we just plan to meet with him in another month for a re-check and also to perform another echocardiogram to see how the blood flow is doing. At that point, he will present our case to the cardiac surgery team and get her on Dr. F's schedule for surgery. We are still looking at the 4-6 month of life window, which means surgery could take place sometime in October, November-ish.

The main thing now is that Q continue to gain weight. She had gained 18 ounces in 14 days when we checked in with our pediatrician last, so that was awesome news. We will take her for a weight check every 2 weeks until her surgery time from what I understand. Our cardiologist just really wants to get her to at least 10-12lbs before her surgery. I just don't see that being a problem, especially now since she is starting to eat much, much better. Almost 2 weeks ago, she was 8lbs 2oz, so I fully expect her to be almost 9 when we go again on Friday. However, if her growth stunts at all, the cardiologist will put her on even higher calorie formula (she already is on 22 kcalorie and would be increased to 24). Hopefully we won't have to go there --- it's harder on the digestive system, not to mention wayyyyyy more expensive. But if that's what we have to do, then we'll do it.

We will see the pulmonary doctor in 2 weeks as well, where they will repeat her OCRG test and see if she is still experiencing apnic spells and how many desaturations she is having. I'm by no means an expert, but I would say that her apnea is either very, very minimal or non-existent at this point. I just haven't had any big scares where her alarm went off for 20 seconds or more -- and she wasn't crying or thrashing around that was making the monitor malfunction. The test is way more accurate than these home pulse ox monitors though, so we'll see. For now, I am very much at peace with her bells and whistles --- most of the time during the day, unless she is down for a nap, she is monitor free. Better for both of us, I think. I usually just pop it on her once or twice a day when she is awake, just to get an idea of where her levels are trending. So besides almost killing myself and the child multiple times tripping over cords and wires, we really are doing well with all of that.

So for now we remain in limbo --- getting her all fattened up for the impending surgery and just taking it easy. It was the doctor's recommendation that we really not introduce Q to the "outside world" - besides the doctors' offices and hospital. Thus, most of the time we are home bound. Not to mention it is 800 degrees outside with 150% humidity and to drag 2 infants with all of their gear somewhere either takes a lot of courage or complete stupidity.

I apparently erred on the latter yesterday and today because I JUST HAD TO GET OUT OF THE HOUSE. So, we did. Made a quickie trip to Gymboree one day and then a quickie trip to another kid's boutique today. And now I see the beauty in the drive through. I always appreciated it before, but always thought it was perhaps a bit lazy to just drive through when you could just walk inside. But now I totally get it. And I totally took advantage of it. Twice. Or maybe three times.

Tomorrow we plan on staying put all day and Matt's cousin is coming over to visit with us. So glad to have some entertainment during the day and something to break up the monotony of watching Ellen & Rachael Ray.

Thank you as always for your prayers for our little blessings --- they continue to grow and thrive and my heart is full. I truly know I am experiencing God when I go in their room every morning to cuddle with them in a moment of silence before the madness of the day begins. It's just the sweetest and most fulfilling feeling and completely gets me through the day. It's seems like it may be cliche to say all the time, but God is truly Good. And I actually know what it means to say that now.

In Him,

post signature

P.S. My sweet friend K and baby C that I spoke about in the previous post are both doing well. C has had a few issues but they are manageable and certainly not unexpected for a baby her size. K even got to put her hands on her yesterday, which in her words, calmed them both down immensely. Again, it's a long road, but we have complete and total faith that C is going to grow and be just fine --- and a year from now, Ryan, Quinn & C will have the cutest little playdates :)

No comments: