We had a really good weekend with Billy being off on Saturday and spent the evening at Mexican with friends. SO much fun. For those of you that know me well, I pumped and dumped at the opportunity for a good time with my "sister". Lilly was such a good girl. She loved having her daddy home on the weekend for a change. Emily was a good girl too, sleeping the whole weekend away. She's still sleeping through the night which is making life much easier. I do suspect though that she will regress with this habit once she has surgery, so we are soaking up all the sleep while we can. Her impending surgery has really been on my mind a lot lately. I'm thinking of the pain meds, leaving her at night, not being able to snuggle, change her easily, and what she's going to look like post surgery. I've read a lot about how alarming it is to see your child in the recovery room. There are roughly 50 tubes connected to them. I hope we're not scared! I've been asking the cardiologist lots of questions. Today Billy said I never gave him a chance to talk before I butted in or asked another question. I guess I've got a lot on my mind...
First off, I can't believe our girl is already two months old! Holy moly times flies. She is still the size of a newborn weighing in at a whopping 7 pounds 7 ounces. She'll forever be a peanut. I like her that way though. So sweet. We've had a few concerns recently regarding her health and we've already had them addressed in our two-day week.
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Yesterday we began our morning at the pediatrician for her two month shots and checkup. Shots always give me anxiety. They're a necessity though (in my eyes). Her weight gain was significant, but not satisfactory. She is up from 6.13 to 7.7 pounds as I said. A lot of weight, but it's only been 11 days since she's seen the doctors last. Don't worry folks, she's still not even on the growth chart, so I won't be bragging about that for a long time! I never got the chance to say Lilly was in the 95th percentile either. I'd have to say the Mehlinger family has little babies. The doctor also checked Emily's thyroid because I have been concerned about the enormous amount of time that she's sleeping. Sometimes 18 hours a day. At 2 months old, we should be playing more and having more playful interaction. Emily can hardly stay awake for more than an hour at a time. Her TSH was at 12, indicating hypothyroidism. This is a direct correlation as to why she has been so lethargic lately. Some would say, "Oh how nice!" but it's really not...I don't get to play with her and when she is awake, she's eating. The pediatrician set us up for an appointment with an Endocrinologist and we see her next Wednesday. We also have a audiology appt to have her hearing rechecked March 5th. Progressive hearing loss is a common trait in children with Down syndrome. Emily may not ever go deaf, but learning sign language will help with her delayed speech and inability to communicate early on. The audiologist will help us understand more about this (I hope).
After those awful shots, Emily got an hour's nap before her therapist arrived...and didn't get much out of her. Many of you have already seen the picture of her on Facebook, but it was hilarious. Poor little thing just laid like a limp rag doll. Speaking of limp, I have definitely started to notice the "talk" of low muscle tone in kids with DS. At two months, Emily should definitely be more sturdy. She still just caves onto your shoulder when holding her. The therapist showed us all kinds of ways to help her gain better head control and muscle tone. We really have to work hard and diligently at this or delays will be more prevalent. As my mom said, the work really begins now. Adding more doctors and appointments and therapies. Oh, this reminds me....we also added Speech therapy this week to help with her suck-swallow reflex. She tends to gag and spit up a lot after feeds...that's Thursday...just another thing to remember. My phone is FULL of reminders! Before this week, we were really just focused on her being a newborn. Now she's needing us more and more for her long-term ability to function properly.
Today we saw the cardiologist. He was so nice, as usual. Dr. Butts (ha!). He's definitely nerdy, but so smart and always, always, always listens to every question I have and answers them all. He asks about the sale of our house, how my mom is, and genuinely cares about us. The care at MUSC has been nothing short of absolutely fantastic. Despite how wonderful he is, he was not pleased with her weight gain. Although Emily has gained, it's not as much as he'd like. Painfully, I took all of my frozen breast milk (all 535 ounces or 4.25 gallons) and thawed out my colostrum milk since it's the most fatty and full of wonderful nutrition. This will definitely help fatten her up. If her weight has not significantly increased by our next visit, March 6th, we will have to see a nutritionist and give her some high calorie formula with my breast milk. Me and the pump have been good buddies for 9 weeks now and I do not intend on quitting, so I hope this little theory of pumping her with fatty milk works (most of you know she never actually took to the breast...so I pump...yes...every 3 hours...). At our next visit, we will discuss the surgery in more detail and he will complete the per-surgical paperwork. We will receive a call later that week to actually schedule it. So nerve-racking!
Emily continues to amaze me (us!). In the beginning of her little life, all I was able to see (and I do believe I speak for Billy too) was Down syndrome. It was still a shock that she was "different" (now I know she's not). I couldn't help but look at her eyes that were slanted and her low ears. However, now, I note daily that when she is awake and alert, her eyes are so beautiful. A beautiful blue. And they're huge. She got that trait from her daddy. She and her sister share big, blue, beautiful eyes like their father.
I'll be back in two weeks with another update! Until then, check FB for my beautiful girls pictures :) Love to you all!
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