Home=Happy baby

Maverick was discharged yesterday afternoon and immediately you could tell he was instantly happier. He's even eating from a bottle, although it has to be given by Josh. I don't think he has moved past mommy as the source of food and comfort nursing. We have a few follow up appointments next week to evaluate blood work and weight progress. I remain optimistic that we are headed in the right direction and the ng tube will be a short term thing. 

Me: Maverick, you ready to go home?

Maverick: (big grin pictured below)

 

Some pics from the last day at home:

 

 

 

Mommy Guilt

I generally try to stay positive throughout all our journeys but sometimes you just need to cry a little. Today was one of those days. I quit nursing a few weeks ago even though Maverick still very much was interested. If I hadn't, would he be at home, sleeping down the hall from me?  I know Maverick isn't critically ill but it still just breaks my heart to see him without his spunk.  

We are on night 4 at the hospital- he's gotten plenty of fluids, iron through the IV, a bowel clean out (not a pleasant few hours 😞), feedings via ng tube. And he still doesn't seem too interested in drinking from a bottle. Josh has gotten him to take a few ounces but not enough to remove the ng tube. I think he'll be discharged tomorrow which is good but we still need to find a way to get him to eat and drink on his own.  Otherwise we are talking about surgery to put in a g tube. We've cancelled our trip to Iowa and will lay low this holiday weekend.   I think I know someone who will snuggle with me❤️....

Bottle Strike

Over the weekend, Maverick decided to refuse drinking a bottle. We managed to get almost 15 ounces in him throughout the day on Sat but just 3 ounces on Sunday morning had me quite worried by evening. I brought him in to the ER for dehydration, knowing they'd be able to get some fluids in him. He puzzled the Drs some as he had no fever and his lab work didn't indicate any infection. They decided to admit him to make sure we get him well hydrated, his iron levels up and back on the eating path.  We spent the day snuggling and napping and did see some perk come back.      

Josh is staying with little boy tonight while I get some rest in a real bed.  I'm not sure when we'll get discharged as it very much depends on Maverick drinking from a bottle.  Fingers crossed for a good night!!

Sneak a peek Pictures!

Love these pictures that represent what Maverick and I went through in Feb 2015 

 

 

 

Foot Attire

Here is Mavericks new AFO!  He got this back in February and will get a left one this week so that he can begin to work on weight bearing exercises. 

 

Catch Up

So it's been 2 months since my last update but that's not to say that things haven't been cruising along. Let's try and do a re-cap of all stuff new:
* My phone app that I use to blog and upload pictures broke so this post will also be picture-less. I need to find a new one as I have a bunch of cute photos to share!
* We ordered a right ankle foot orthotic (AFO) in early February and received it a couple weeks later.  He only wears it at night and thankfully seems to tolerate wearing it pretty well.
* We spent a weekend in the Wisc Dells with Travis and Kristi and their kiddos.  We all had a fun time, even Maverick who I was worried would be bothered by the echoing noise in the pool area.  He ended up enjoying the pool and all the people to watch.
* I had pictures taken of Maverick in mid-February to celebrate his sneak-a-peek day.  They turned out amazing and I am so glad we did that.  I'll share a few in another post.
* Maverick had outpatient surgery on March 14 (nothing SB related).  All went well except for his sleep since then.  He has decided that waking up every 2-3 hours is a fun game to play with mommy.  Ultimately, he wins that game :(  He's also turned into a major mommy's boy which results in me holding him often.  I don't complain too much about that and try to soak up the cuddles when I can!
* My grandpa passed away on March 12.  Luckily I (along with Jaxon) was able to go visit him the day before he passed.  The whole family made the trek to Sheldon for the funeral - 14 hours in the car does not equal fun for all, in particular a baby who doesn't want to be in his car seat.  But it was nice to see family and reminisce about the great memories with Grandma and Grandpa Potter.
* Maverick has started weekly PT clinic visits.  The hope is that this propels forward some of the progress that we're seeing in the gross motor development area.  He's handling it okay, ends up getting fussy about 40 minutes into the 60 minute session.  As he gets used to the PT, maybe this will get better.
* Maverick turns 1 this coming Sunday.  Where on earth does the time go?  I cannot believe how fast these past 52 weeks have gone by.  I also can honestly say that outside of the many many doctor's appointments, I've been pleased with how little actual interventions we've needed to do in relation to SB.  He's my rock star!

Sneak-A-Peek!

Exactly one year ago today, Maverick and I underwent surgery at Children's in Milwaukee.  I remember being scared, hopeful, nervous and generally anxious.  It is often referred to as his butt day or as I have decided to refer to it - his sneak-a-peek day!

I sit here, holding my beautiful baby boy, who is thriving, happy, easy-going and doing so wonderful and cannot associate the feelings from before with this little one who fits so perfectly into our family.  Josh and I are so grateful for the care we received at Children's Wisconsin and the benefits that Maverick has received from the surgery.  We still have a long road ahead of us and I'm sure there will be ups and downs, but it will be a journey that we take as a family.