Update - 10/25/2015
I am so excited to share with you some of the progressions that we have had. I must start by telling you about our little warrior Brodie!
Yesterday was a really rough day and then a good day - Brodie had a really rough go with sleep. He just could not let himself rest. He was up for about 20 hours straight - he was SO tired. You could tell he just needed to sleep so he was irritable, cranky, wanted to be loved, wanted to be laid down, wanted food, wanted who knows - but my poor Mom who was on Grammy duty and night duty had a go with him at his worst night. I was able to come over in the morning and take over giving him some love - but Mama’s love was not the answer either.
They gave him some ultrasounds and he also had some respiratory “pounding” (which he loves and gets every 4 hours) to help with some of the congestion and then we decided that poor little guy just needed to sleep. They gave me a chance to nurse him I was so excited (Yes little buddy finally gets to eat!!) and he didn’t even have the energy to latch on. He just continued falling asleep and waking up and falling asleep and waking up. That is when we finally decided tie for a sedative.
He took about a 5 hour nap and woke up refreshed and then they decided to start him on some breastmilk - they started feeding him through his NG tube (this is the tube you see in pictures that is hooked into his nose) they started him off with 10 MLs (this is so tiny think of a little medicine dropper this is like that amount) every hour through this tube - they wanted to observe and see how his tummy processed everything and how everything was “working”.
Things went great. Russ was on daddy duty by then and Brodie was able to soothe himself and took quite a few naps and had a really good night. I think Russ thinks it is because the Buckeyes games was on and it was the eve of Football Sunday - which Brodie obviously LOVES - HA!
Today came and it just started great. I woke up to Russ calling me and telling me that Brodie was going to get a bottle! A what - I said? A bottle. Russ repeated - a real filled up baby bottle. ANNNNNND they are going to take out his NGTube (this is the tube in his nose).
So I received a video shortly after of my sweet big guy feeding my adorable-face-tube-free little guy a yummy bottle (I will post later this week it is too cute not to!) Brodie totally chugged the bottle that Russ gave him and he was starving for more. He did great.
Our rule was today feed him when he is hungry we didn’t go over 4 oz a feeding we still want to take it slow but it was amazing! So great to see his little lips smacking and him enjoying the deliciousness of milk - hooray!
Then we got even more great news - we are being sent out of the PICU tomorrow - WOOT WOOT. We will be going to the step down floor! This is where Brodie will be observed and we will watch how he eats and how he is gaining weight and then… wait for it… are you ready? IF (and this is a strong if but IF) he responds and does well - we could be discharged this week. Um. Yes. You read that right. If Brodie continues to eat consistently. If Brodie continues to show progression and weight gain. Then we will be going home. Now remember anything could happen so who knows if this will even happen or come close to happening but we just like to know it is a possibility and that makes us really happy.
And if my day could not be any better after all of this - I came over for one more snuggle session with Brodie and was just snoodling with him like I always do and then it happened. He gave me one of his big gummy baby delicious smiles. And kept smiling and smiling and smiling for about 10 mins - thanks to the photography skills of Leann (my sis) she snapped me and him in the photo that is here.
My heart melted and I cried again for the 23430750402938402 time this week in sheer joy and baby bliss - that my little guy is nestled in there and milestone by milestone we are working our way up and he is just loving his new liver and I am such a thankful-awestruck-amazed mama that I have a beautiful boy who is a miracle and moving a mountain right in front of me.
So I will leave you with this Tribe…
“I truly believe that everything that we do and everyone that we meet is put in our path for a purpose. There are no accidents; we're all teachers - if we're willing to pay attention to the lessons we learn, trust our positive instincts and not be afraid to take risks or wait for some miracle to come knocking at our door.” Marla Gibbs
#truth Marla - This little man is inspiring me and hopefully you every day. The people that work with us at CCF inspire me every day. The support that has been given to us by family, friends and BGVT Community is inspiring.
Maybe, just maybe, in this crazy world and with the horrible things that are happening, our little Brodie Tigue is here to show us that people are good. That there is hope. That humanity is greater than what media leads us to believe. That we do love one another. And we fiercely protect one another when we are down and wounded.
My belief in human compassion and spirit is higher than it ever has been and it took a little liver giving for me to get there. My little guy to lead me there. But he was smiling at me tonight telling me big good things are always possible.
So look and seek for the good today and I am sure you will find it.
XO - TT