"Keep your faith flowing even when there is no hope in sight. Dare to dream big and pray boldly, especially-yes especially- when there is no hope in sight!"
So today I ask that you pray boldly- pray for my sweet baby boy, for tomorrow he will go through his sixth...yes SIXTH...surgery. Poor Baby! After three weeks of will we or wont we Blake's eye exam showed enough that they feel that laser surgery is necessary. So tomorrow its a go.....
Good news is that this should be a relatively basic surgery. They will only give a mild sedative and hopefully (Fingers crossed) his breathing will be able to tolerate it without the need for
that stupid breathing machine the ventilator. I just have to keep repeating "one more step closer to home...one more step...just one more step..." Its kind of like when you hear a song on the radio too much...it gets old! BUT, a year from now this will all feel like so long ago and I will be wanting to slow time down so for now I am learning patience...or trying atleast!
We had a few bumps in the road this weekend. Zach and I had noticed since Blake got extubated on Friday he had been majorly fussy! He would not even stop crying when Zach and I held him--he was inconsolable! It was heart breaking- at first on Friday the team told us it was nothing probably just a sore throat and said they could give him anything...then saturday as Zach and I pushed more and more- and one of our regular nurses came on and she pushed more and more the team finally did blood cultures, and sent a urine culture...(drum roll....prepare for a bump in the road again) yes of course they BOTH came back positive! Poor baby got another UTI and his blood culture showed a possible infection from his central line...So antibotics were of course started again and if this next blood culture comes back positive too they will be pulling his central line out.
In his PJ's ready for bed.
Wrapped in his burrito.
Blake otherwise is doing great, he remains on the vapotherm at 2 liters on room air 21%!!! He has been tolerating it so well and will hopefully continue to make strides in his breathing and move down to wall oxygen through nasal cannula.
Taking his binkie all on his own now without any help!! (Most of the time)
Blake Face Planting into his blankets...silly boy!
Blake's belly is healing well and the doctors say it looks GREAT! He is up to 13ml every hour of breastmilk and is tolerating it well. I ask our doctor today and he said the next step is to up his caloric intake, then try to do condensed feedings (meaning giving the milk over a shorter amount of time rather than running a continuous drip) THEN we will attempt bottle feeds or possibly even breastfeeding....but we will just have to see!
Killin' em with cuteness!
Blake look at the camera- hold it...
No no No crying....hold it...
Blake has a new found love of eating his fingers.
Blake's reservoir placed in his head is working well and the neurosurgeons plan on leaving it there for a few more weeks so they can remove excess fluid from his brain every week but the plan is now to have a shunt placed. A shunt is a device that is permanently placed in the brain that will automatically drain the excess fluid into the stomach to be absorbed that way the doctors wouldn't have to have Blake brought in every week or so to remove the fluid themselves. You may be wondering why then did we not have the shunt placed to begin with?!? Unfortunately, because of Blake's belly surgery we were unable to, and the doctors were not sure if he would even need to be tapped (the fluid being taken off) that often...but seems that he is needing tapped about every 4-7 days so its a go on the shunt too....so surgery number 7 will be in the works. However, again UNFORTUNATELY, the neurosurgeon will not do this surgery until his belly is fully healed- her guess another 3-4 weeks or so. So what does that mean? looks like our butts will be here in Indy for a while long....(Big sad face!)
On a positive note though....
Blake is feeling SO much better, and we have literally been able to hold him all day everyday!! and believe me...we are taking FULL advantage of that!! Blake is SO much farther along than we ever thought possible and we thank God everyday for that! He has beat so many odds, and this is just another part of the NICU rollercoaster, and we are for sure not the first parents to go through this nor will we be the last. SOOOO...
Keep up the prayers, and support!! We are here for as long as we need to be!! As homesick as Zach and I get sometimes though we look at our little miracle and we know there is no where else we would rather be, and we aren't going home without our little boy in our arms!! Good thing is that we have gotten pretty used to Indy and its almost becoming like a home away from home... (just a little less awesome!!)
Pictures of our constant holding and even a new family portrait...does the boy look spoiled...I think so!
DaDDY and Blake watching a Movie.
Blake might have fallen asleep
Yep I think he is out...snoozing and dreaming away.
Daddy's best friend outfit!
But he loves his mommy too...
Loving her lil' man!
A new family portrait-
I love the look blake is given-
"dad you didnt go to butler!"
"Hurry blake is looking at the camera!"
Mommy and Blake time.