We've been loving life at home with our boys. We are still more or less figuring out the routine which happens to involve little sleep, lots of bottles, medicines, diaper changes but more importantly lots of love, kisses and cuddles.
The boys have more appointments in a week than most of us have in a year. This week alone they've had pediatrician appts, neurosurgery follow up, home care nursing visits, therapy and an early intervention consultation. Alex will be having a cat scan of his head next week to determine how much fluid is currently in his ventricles. As you can see from his pictures, his sweet little bubble isn't so little, and his forehead and overall head circumference is getting larger. His neurosurgeon anticipates that he will be admitted for a VP shunt early September but the cat scan results will tell us if it needs to happen sooner or if we can buy a little more time. The more he is able to grow prior to the shunt may help lessen the future revisions that he will need. Children often need a number of shunt revisions as they "outgrow" their current ones.
And growing he is!!!! He came home a week ago at six pounds, two ounces and now he is an amazing six pounds, 11 ounces. Nicholas is starting to get the hang of this growing thing too and he is now six pounds, 2 ounces. His little cheeks are starting to fill out a bit like his brothers and we are just thrilled that they both seem to be thriving at home.
It is truly indescribable how it feels to be finally be settling in at home with our family. We grow more in love with these little guys by the day; and we are enjoying watching our friends and family as they get to visit and begin to know our boys as the amazing little ones that they are. Thank you to all of our friends and family as they continue to love and support us through this incredible journey. We are so blessed by all the cards, notes, meals and visits. A HUGE thank you to my mom who has taken two weeks of her vacation time to spend with me and the boys as we figure out caring for two newborns with extra needs while Mark returned to work. The boys are thoroughly enjoying time with their Nana and so is their mom!!!
Here are just a couple of photos we love.
Alex
Nicholas
Nicholas wondering "wait, who is this guy?"
What? he's sleeping in MY room?
1 comment:
Holli and Mark,
I know this sounds crazy, but don't sweat the shunt - as a father who has endured 12+ months of a shunt, I say the sooner the better.Once the initial shock and stress wear off, you will be so glad it was done.
Annabelle is one now and I can honestly say I only think about her shunt 2-3 times a week now.
As with all things SB-related, the anticipation is much worse than the actual result.
Blessings,
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