You are getting so big and chubby. You now weigh a little over 13 pounds, and though that number seems small compared to some babies at 5 months (especially your younger, 18+ pound cousin), you are right where you are supposed to be! You are SO incredibly happy, all the time! You are more perfect than I imagined you would be.
When your father and I took you in to Baptist last week for your PE tube surgery, you wouldn’t stop giggling and smiling. When we first brought you back to the holding area inside pediatric surgery, all the nurses that came to check in on you fell in love with you. Even the men. Everyone wanted to hold you, to stare at you, to talk to you. You didn’t give them any reason not to, because you were laughing at everyone. After everything was over, and they ended up giving you anesthetics but you needed no surgery, they called me to come back to see you. One of the nurses was holding, rocking and singing to you. Two other nurses were standing behind her, staring over her shoulder to see you. They were awaiting their turn with you. You were all smiles, just as I had imagined you’d be. They handed you over to me, but one of the nurses insisted that she had not had her turn yet and she took you from me. I was okay with that, because I can share :). One nurse even decided you were her boyfriend before we left, and she was pretty sad to see you go. Babies don’t get much happier than you are. A lot of times I can feel you gazing at me, and when I turn my head to look at you, your big, sweet smile spreads from ear to ear and I just want to squeeze you!
I am obsessed!
Although your milestones are a little different than they’d be if you were eating and taking anything by mouth, you are still surprising me daily with all you are learning.
This past week, you rolled over on your own for the first time. It actually happened when you were waiting to go in to surgery! You were just showing off.
You’ve also begun reaching for things and holding on to toys that hang from your swing. Your Mommaw said that you were laughing at the lion on your swing all night last weekend. You’ve been shaking your rattle some. You can hold on to your paci and you are getting much better about navigating it back in to your mouth. You are using some vowels, babbling and blowing raspberries with your mouth. You constantly stick your tongue out and I know that in no time you are going to be shoving objects in your mouth whenever the opportunity to do so arises.
Your head full of hair is slowly balding, but you look pretty cute with your bald spot. Such a little old man you are. Your hair is still so dark, and we are all anticipating the day it all falls out and grows in blonde, like your brother’s did, but maybe you will favor your daddy more?! I really hope so. You look so much like him in every way. Eyes, nose, smile, complexion…. hairyness.
You sleep throughout the night. How did I get so lucky? I still have to wake up every four hours to switch out your milk for your pump, but I’m so used to waking up that it doesn’t phase me anymore. I enjoy it, because you are so sweet to watch as you sleep. You smile in your sleep so often, and if I really wanted to be obnoxious I’d turn on a light to get your picture, but that just seems cruel. You are always so peaceful. In the morning, as you start to wake up and cry out for attention, immediately after I lean over you, your bright smile lights up the room. I don’t even have to open the blinds, those big eyes reflect any light around.
Mostly life is starting to feel more normal. Your doctors appointments have slowed down immensely. We still end up with weeks where there’s an appointment almost every day, but we also go as much as four weeks without any appointments at all. You are overall a normal little guy, and I’m so used to your routine that I don’t feel so lost and alone sometimes. I still see friends with their babies, beginning the stage of baby food and rice cereal, and I feel happy for their little one’s milestones, though at the same time I wish that could be you. I will never forget the moment that a nurse in the NICU told me that I would probably never get to nurse you. Well, I have tried to nurse you a couple of times, without consent from the doctor. (I just had to try.) Nothing too major. I didn’t allow it to go overboard. But at least if you are still on a feeding tube by the time you no longer need breast milk, I can say we tried. I was very heart broken at the time, but as long as you are still getting the nutrition you need, in the long scheme of things, it doesn’t matter so much. Would I love to see your face covered in milk, cereal, baby food and to see the satisfaction you feel of a full belly by the redness of your cheeks? Yes!!! There is nothing I want more right now! But, are you healthy? Are you happy? Are you on the right track? Absolutely. I am content with that.
You officially get your hearing aid this Friday. We have been meeting with some people who come to our home and give assessments of the skills you have, and give us exercises to get you on track with your hearing. We are supposed to do A LOT of reading with you, which is something I enjoy doing with you. You love to be talked to and held, and I love the bonding time we get to have with each other. I’m also supposed to sing to you often. This doesn’t change anything because I’ve sung to you since the day you were born. Even in the NICU, I was not ashamed to express my love for you in that way! We will do a lot of pointing, listening and understanding where sounds come from. Because of the auditory neuropathy that affects your left ear, depending on what type you have, it could be a lot harder for you to receive information the way people with normal hearing do. It may be really hard for you to decipher language or noise if there is more than one sound at a time. A sentence going in could also be jumbled and interpreted wrong, with “I am going to the store” being said to you could sound like “am to store” or something along those lines. We just don’t know much about that ear yet. Your right ear, after all fluid drained, ended up being more mildly moderate hearing loss instead of moderately severe. That was great news! I could tell you were hearing better, because you have really been jabbering a lot lately, and turning your head more to sound around you.
Good things are coming our way, I just know it. I am so excited to see what God has in store for us this year. He has given us a lot but it has all been worth it. There have been moments where I have just wanted to give up. There have been moments where I just felt sorry for myself and wondered why I couldn’t have it easier, “why me? why you?” I have been human a lot of times and burst in to tears because I couldn’t get anything done or have a moment to myself. I have to remember that what we have been dealt is not the end of the world, not even close, and that the perspective I have to have on our life is that we are simply blessed beyond words. No matter all the chaos life seems to dump on us at the most inconvenient of times, it doesn’t matter in the long scheme of things. What matters is that we are here, we have time together, we have memories behind us and more memories to make. You have given us reason to see so much good in everything, because God has been so good to us through what we’ve experienced with you. I see it every day through the joy in your eyes. Through the love that uncontrollably spills out of your brother when he realizes you are in the same room as him. Through the calls, texts, constant messages that people send me to ask about you. Through the rekindled friendships, the new and the old ones, and the amount of selfless love everyone has poured out to us throughout all of this. I only wish that each person going through a difficult time has as much support as we’ve felt through it all. God has been nothing short of great. God continues to fill us with hope and certainty that you are where you need to be, that we are where we need to be. Patience is what guides us. Tomorrow isn’t worth the worry, so we’ll just enjoy this ride one step at a time.
Love you, Chubs.