I can't believe it has been another month already, time flies so fast these days! We are getting ever closer to needing your next surgery, which makes Mommy a little antsy. Ah, who are we kidding, a LOT antsy! There are so many things to do, and there is so much unknown. Your Mommy is a planner if you hadn't noticed, so theres a lot to do! We had it narrowed down to two hospitals, Saint Louis Children's and Nationwide Children's Hospital. After lots of praying and discussion we decided on the surgeon at Nationwide. He seems to have the most experience with your type of defect and first open heart, so we feel the most comfortable with that surgeon.
This past month has been so busy. We ended 2013 with the loss of a very dear family member, your Great Grandpa Allen. While he only met you in the NICU, I am so glad that he did get to meet you. It was a bittersweet end of 2013 and beginning of 2014, saying goodbye to someone we dearly loved.
We were ecstatic to start 2014 with you AT HOME. But unfortunately that was short lived. Before we knew it - you weren't tolerating feeds, you had SO MUCH AIR in your belly that we couldn't get anything in. After sleeping with you on the floor in your room next to us (well - Daddy did), and getting NO sleep, we made the call to your cardiologist to check heart function. Our last hospital stay it was said that not tolerating feeds was heart related, so we went to go check that out, ASAP, as we were slightly worried (read: panicked) that something was going terribly wrong. You were given the all clear from the heart standpoint, but we couldn't stay home with you not tolerating your feeds.
Before we knew it we were back at the hospital in the same predicament we always are, with you being a super hard stick, no one able to get a line. We spent a few rough nights of them forcing pedialyte and you crying all night. Finally you got gut rest, got a line, they scoped, and found that you had a very "rashy" gut. After biopsies the results were consistent with a protein allergy. They started you on the most basic of all formulas and sent us home after a week with a sample can of formula and the flu. Yes, you read that right. We picked up some germs while we were there, and you tested positive for flu. Now that we have been two weeks on that formula we are just hoping your gut will heal up and tolerate feeds. You still seem to have ridiculous amounts of air that just breeds in there, so it's all very touch an go.
This month you are still barely on the growth chart at less than 1 percent all around. You weigh 13 lbs and 10 oz, you are 25 inches long, and your head is 34 cm. You are still wearing size 1 diapers, you are fitting into 6 month onesies, but are starting to get too tall for those. You hair is still amazingly puffy with body, and it still has curl to it most days. Your Daddy is still dying to trim it! You are sleeping so-so on your continuous feeds at night, you definitely have to be vented half way through, and you cry at times when you lose your paci or if you want to be turned. You still aren't taking anything by mouth, but we are trying to encourage you to put things in your mouth. (this is so backwards for germ related reasons!!). You enjoy your paci, you love chewing on things like my knuckles, washcloths in the bathtub, and stuffed animals. We are hoping that once we figure out your belly issues maybe you'll want to eat by mouth again!
You are doing better at tummy time. Even though we still do it inclined, you are definitely getting stronger. You have started to understand the point of your jumper and you love jumping around and playing with the toys. You have found your feet, and are attempting to take socks off some days. You are getting better and turning side to side on your back, and you are sitting up fairly well with assist. You have really started to notice Pearl, and you love to watch her. You are pretty happy go lucky, unless you are having issues with a feed or if your fur sister gets overly excited with her tail and whacks you with it.
You are down to 4 different meds right now. It's crazy, and almost weird to draw up only 3 at 8am and 3 at 8pm. It's a vast improvement from up to six each time!
We still find that we walk on eggshells with you. Every time you don't tolerate a feed, or are overly full of air in your belly, we get nervous. The last thing we want is you to get sick, or for there to be another heart issue. Again. You have made us far more cautious and concerned, and we find our conversations seem to always revolve around you, your feeds, your day, your attitude. Despite all this, you are our total joy. No matter how little sleep we get or how concerned we are, you flash us a little smile and you are forgiven a thousand times over! You can give us one heart melting coo and we are putty in your hands. We didn't sign up for this stress, sleep deprivation, and huge life changing decisions when thinking of you, but I know we would both say we wouldn't have it any other way. Nothing could make us love you any less, that's for sure, and we will always be there to fight for you, to back you up, and to encourage you. We love you!
As long as I'm living my baby you'll be,