eleven months, seriously!? Next month you’ll turn ONE. That’s crazy.
Your progress these past few months has been amazing. As your speech-language pathologist said after your swallow study last week, you’ve overcome all the odds. As far as medically complicated trach babies with a feeding tube go, you are super healthy.
You weigh 20lb 11oz and are 29 inches long. You wear mostly 12 month clothing as you are too long for your 9 month sleepers. In boutique clothing you wear anywhere from 12 to 18 months. I still completely adore dressing you up! You are crawling and getting anywhere you want to go. You also learned to bring yourself into the sitting position with no problem. It won’t be long and I think you’ll be pulling up. You have 4 teeth- 2 up top and 2 down bottom.
You take 4 7-8oz bottles per day. We cut out your night feed and upped your day feeds just a couple weeks ago and it went over well! I love that you can sleep now without being hooked to a machine. You love snacks- puffs were your favorite until you tried yogurt bites and now that’s all you want. You also enjoy baby food and we allow you to taste table-foods as well. We give you 1/2 breastmilk and 1/2 formula. Yes, I am still pumping for you. I’ve attempted to show you how to nurse a few times, but you bite and it hurts super badly. I know that is because the Pigeon bottle you use works by compression when you close your mouth and teeth on it instead of suction so you don’t understand how to suck just yet. I don’t know if you’ll ever nurse, but I am finally to a point where I will be okay either way. That doesn’t mean I’m going to give up easily though.
You passed your swallow study on November 6th with nectar consistency foods! This means you can finally safely have bottles so we are working on that. We have to add 1tsp of cereal or thickener for each ounce of milk. So far you are taking about 2 ounces at a time then we push the rest through your tube. You SLP was so proud of you- she said she knew it was either going to be really bad or really good. At you swallow study in July, you wouldn’t even initiate a swallow and you totally rocked it this time!
You underwent your cleft repair surgery on October 14. It wasn’t nearly as bad as we expected. Staying the night in the hospital was the worst part. You only needed a couple doses of pain meds and barely whined. Although Dr. Ray recommends arm restraints, you ended of not needing them. You wore them for maybe an hour in the hospital and we never put them on again. We were afraid giving up the pacifier would be difficult, but you were a trooper! I’ve even tried to give it back to you a few times and you show very little interest in it now. Dr. Shirley also scoped you during surgery and gave us great news- your jaw has definitely grown and your tongue doesn’t completely block your airway anymore. He gave us the go-ahead to downsize your trach to a Shiley 3.0 NEO so we did and now you are so noisy. We love being able to hear you! We decided to stick with Dr. Shirley so he will be your ENT from her on out. It means more trips to Birmingham, but he is specialized in children and we only want the best for you.
On October 9, you were by my side as I watched Daddy take his final breaths. I know you’ll never remember your Pop, but I hope that you can feel the love he had for your through me. He wouldn’t let go until he saw you again, sweet girl. He had been hanging on for a week when I finally realized that he was waiting on you. I took you with me to see him and we were there a few hours. I sat you on the bed with him so he could feel you near him and I told him how wonderfully you were doing. I let him know that you were going to be okay and within hours, Daddy let go and went home to Jesus. Brynlee, you had a bond with your Pop that I will never be able to fully explain. I believe that God knew Daddy needed you to be his sunshine. He needed you to root for during his darkest days. Now he is your guardian angel and I know without a doubt he is watching over you and cheering you on. He loved you so, so much.
Since I’ve last updated you’ve also enjoyed your first fall fair and your first Halloween. The fall fair was the last time we all went out with Pop, just two weeks before he passed away. He sat and held you as you took in the bright lights and fun sounds. It was a wonderful night, no doubt a great parting memory to have of our time with Dad. You were sweet as sugar, not making a peep as usual. You are just so happy and content. For your first Halloween, it only made sense that you were a Cabbage Patch Kid. People stop me while we are out and comment on Facebook that you look just like a baby doll and you are basically a CBK twin so it worked well. We completed the look with a Hello Kitty dress and some ruffles of course. We only made a few stops- Nana’s, Mawmaw’s, and Gangan’s, because it was super cold, windy and rainy.
We are so proud of you and so thankful we were chosen to be your parents. I know I’ve said it before, but you really do have the sweetest spirit. Life has thrown me some tough punches these past few years, but I’m so glad God gave me you. You’ve struggled this year, but we’ve watched your grow stronger daily. You are fearfully and wonderfully made and I am so thankful you are mine.