FINALLY FIVE POUNDS!

Yep, Max has finally reached the whopping 5 pound marker...we are thrilled! He is on a VERY high calorie diet (which sometimes gives him stinky gas!) and his medical team is working very hard to get him bigger and stronger. While I am excited about the 5 pound marker, his docs and nurses say he really should have gained more than that by now. According to some various tests, he is not digesting his food too well...and of course he is burning a lot of calories with his labored breathing.

Regarding his heart, the doctors increased his meds again today. However, if this does not work, they are talking about moving up the heart surgery. That would be a temporary fix until they perform the complete open heart surgery.

On another issue (and to end this update on a positive note), oral aversion is very common among children with prolonged stays in the hospital. Feeding tubes, intubation, etc. often cause babies to not want items near their mouth. I have been working nearly daily with an occupational therapist to prevent this problem. And finally today, he took the binky...and sucked away and away! He has taken it before but only for short periods of time. Today he sucked on the binky for over 15 minutes! I was overjoyed and very teary! Very exciting little milestone for us! Little Max is growing up!!!!

Here in the photo, his cuddly friends are congratulating Max for reaching 5 pounds AND for his successful binky sucking! Way to go Max! (The mask in front of him is how he gets his oxygen.)

ANOTHER DIP ON THE ROLLER COASTER

I remember visiting Maxwell in the NICU that first day and being told by the nurses, as well as fellow parents, that life in the NICU was very much like a roller coaster. Nothing could be a better description! There are many up and down days...you will be coasting along for awhile...feeling very good about your baby's stability... and then suddenly the bottom drops out, you receive a horrible update and you are speeding downwards. Then gradually you start climbing up the hill and experience some welcome relief...but then sure enough you go back down again. Some hills are gradual, some dropoffs are VERY steep. Such is life in the ICU.

And unfortunately today is one of the downhill days. Max had a period of several good days and they were hoping that he would soon be able to transfer to the lower level unit. However, today his heart failure is rearing its ugly head. They are increasing his meds and hoping that can help. What happens is that his large (everyone always says, wow, that is a very large VSD...listen to that murmur!) VSD (hole in the heart) moves blood around to the wrong places and therefore the lungs have to work extra hard to move around the oxygen. Sure enough today he is breathing extremely hard and his chest xray shows that his lungs are extra "wet". I'll keep you posted.

On a lighter note, Max is looking super cute today...one of the nurses put a little pug stuffed animal in his arms and they are swaddled together looking adorable!

GOOD DAY!

Another uneventful day in the life of Maxwell...that's wonderful! He had a very peaceful day and enjoyed lots of good cuddling time with Mommy, as well as his Uncle David and Aunt Meredith. Max also got a big boy bath and is looking pretty darn cute!

There actually was talk today in morning rounds that if Max continues to have stable days, he might be transferred to the lower level unit next week sometime. (This was also discussed three weeks ago and then he went downhill quickly and had to have surgery, so I am trying to not get overly excited until it actually happens.) In the lower level unit, he still is very closely monitored but not as intensely as in the IICU. Parents play more of a role and are prepared for taking care of the babies when they come home. The other fun part is that I will get to sleep in the room with Maxwell!

We have been in the hospital for over 6 weeks (and another 3 weeks on bed rest)...I am getting very excited to bring my little guy home! Most likely it will be atleast another month before he actually heads to Bellingham, but still...progress is progress!

EYE EXAM

Yesterday afternoon Max endured yet another extensive eye exam. Coloboma is a common eye problem with CHARGE (80% - 90% probability) and causes severe loss of vision. MAX DOES NOT HAVE COLOBOMA! WOW! This was amazing news. A few weeks ago we were initially told that he most likely did not have this issue, but I wanted to be reassured on this and other eye matters. He also does not have glaucoma (which they thought was a possibility last week) or detachment of the retina (problem with preemies).

So while Max did not enjoy his exam (he was on morphine so he actually handled it pretty well!), I definitely enjoyed the good news!

This evening Max will be visited by his Uncle David and Aunt Meredith. So excited to introduce my beautiful baby to more family!

HAPPY TIME

Max and I enjoyed a wonderful morning together! After being a bit cranky (ok, more than just a bit!), Pru (one of Max's FAVORITE nurses) and I decided he needed his nose stints suctioned...and sure enough after that, he was wide awake and looking absolutely gorgeous! We read books and sang songs and just loved on each other big time! Here is one of my favorite photos...isn't he so yummy cute!?! Couldn't you just eat him up! ENJOY!

Speaking of Pru, this is a photo of Max being held by her as she prepares him for care. Can't you just see the love in his eyes? He really likes her a lot!