The little babina is just as sweet as ever! She is a complete flirt. We can't get enough of her little smiles, babbling, and giggles. She did make the growth chart at her last appointment. She clocks in at the 5th percentile for weight. I am so confused by this because she looks good and healthy. When they weigh her I keep thinking that some day she will have gained five lbs or something. She only weighs 16 lbs, but she looks much much bigger. If you look close enough you can see her fuzzy back. Hair growth is one of the side effects of her rejection medications. It doesn't bother me in the slightest, but she'll probably care someday. Daddy has lots of playful names for her that I remind him will have to stop before she can understand him. The most common nick name is "baby chewbacca." Mia will just have to join the ranks with the rest of our kids who are known by anything but their real names. Ellie started calling her "Mimis"- It so cute when they come up with their own nicknames- I've trained them well!!
She loves that brother. Loves him. Wish I could say the same for sister- she would scare me too if I weren't her mom! The kids really enjoy her and they spend a lot of energy trying to make her laugh. Some days I sit back and watch them interact and can't help but feel so incredibly blessed because it is exactly what I had hoped and dreamed of for all of them. It is tender to see the mutual adoration between them all.
She sits on her own, but not without pillows on the outskirts. I feel like she has gone too long supported by everything that she doesn't get that she has to do it herself. It cracks me up because she will sit forever and will hear something behind her and when she turns to look she just takes a dive. Mia is getting a little more vocal, but her main word is still "mom" in every variation imaginable. When she wakes up from a nap she calls for me- it is music to my ears. Lately she will say dada, but I don't know if she is associating it with the real deal or not. I have been trying to teach her to say "ba"because it is pretty much the center of her universe. Today during therapy she said "up"... that was a fluke for sure, but I do say that to her a lot. When she she is on her tummy I say "up" all the time to get her to push up onto her arms. It seems that she hasn't progressed a ton physically, but cognitively seems to be going at a faster pace. She also has a little sense of humor. When I put her neoral (rejection drug) in her mouth she holds it there for a long time, then will spit it out and smile- it's super cute and extremely frustrating! I have started to blow in her face because she will hold it her mouth waiting for us to not notice...turkey!
Sweet baby has been eating like a CHAMP! Well, ok- not like a Champ, but she's eating. She doesn't currently have the NG tube in, but may need it back in if she doesn't take enough. We have had a few two day trials and she always ends up with the tube back in. Yesterday she did wonderfully mostly because when she is asleep she gulps it down. I don't really want to get the bulk of her nutrition while she's sleeping, but desperate times call for desperate measures. Sunday morning when she pulled her NG tube out it was bloody. I knew it would happen eventually, she has had the tube for 11 months now. When it comes to Mia and her health I try not to get caught up in all of the could happens. The blood was one of these issues. A tube doesn't belong in her tiny body, and if you think about it (which I try not to) shoving something down her throat sometimes multiple times a day is bound to do some damage. When I saw all of the blood- my heart ached! Why in heaven's name won't she just TAKE A BOTTLE??? Well, she does. She has taken a bottle for months, but is NOT interested after an ounce or so. I am happy to say she is improving. She takes a couple of ounces when I'm holding her and when she's asleep she takes her whole feed! We are taking baby steps. I have never liked the saying: "It's a marathon not a sprint." I heard that a lot in the hospital and always mustered a smile when inside I was thinking, "gee thanks for the help!" I'll take the sprint plan please. I have zero desire to be a marathoner- zero! I do how ever have great memories of winning sprints in elementary school. That is probably the last time I ran at all :-)
Anyway- we are currently tube free and she is getting by on barely enough volume. She is taking about 18 oz a day with solids for lunch and dinner. I personally think it's plenty, but they really want her to be at about 24 oz in a 24 period as the bottom line. Other heart mom's have told me they don't get this much in their baby. I get nervous because if she gets dehydrated and I give her the meds- it can cause her to have seizures. Not happening. I will try her tube free for a couple of days and pray and pray and pray that some instinct that existed when she was born will kick back in.
She is actually quite fond of her bottle and kicks when she sees it and lunges toward it, but when it is in her mouth she chops it. I usually end up squeezing the bottle while she pretends to suck. If we are tube free here soon I will post about what I did for those of you (like me) who wish someone would just fix it already. It's always more emergent when their blood. I have come to grips with the tube, but if it's making her bleed...it has to go!
She is loving the solids and wants anything I am eating in her mouth. The trouble is she will gets a tiny piece or anything, she gags, and throws up her entire feed. She is still toothless and has an extreme gag reflex. Oh the joys!! Luckily it hasn't seemed to discourage her from wanting to eat everything she can get her hands on. I would love for her to cut some teeth and enjoy eating foods with a little more texture. Unfortunately the same medication that makes her fuzzy also makes her gums thick. I suppose all of the side effects are a small price to pay for all the good it is doing for her.
Hopefully soon there will be a post about the NG being gone for good. I have thought about that blog post on many occasions...what should I title it? How many different ways can I describe "gone" and in what languages. It keeps me up at night.
That is pretty much the latest with our little heart baby. I cannot believe she is almost a year old...that is going to be a monumental day for our family!