Emotional Rollercoaster

This morning as I awoke, from my wonderful 3 hours of beauty sleep, I found Xavier snuggling with a nurse in the rocking chair.  She had begun to feed him through a bottle and he had drank 30 ml (1oz)!  That was very exciting news seeing as right before his surgery he wasn't drinking anything orally. He was also no longer on high flow oxygen, but just a regular nasal cannula!  The day was starting wonderfully!!!  After he the nurse was changing his diaper and said, "maybe I can find him a onsie to put on"  when I replied, "Oh, I brought him lots of clothes!"  I held up two shirts for him to decide which one he wanted to wear and he stared at his comfy stripped vest instead of his plaid button down shirt.  Only 2 months old and already picking out his clothes! :)  It was so nice to see him in regular clothes, almost made you forget that he just had open heart surgery 2 days prior and not to mention a different surgery 5 days prior as well!  There was just something about the way he looked and how he was acting that made me think he was doing so much better!  His coloring was great, he was so alert, he was eating well, and he was moving more than I had ever seen him move and squirm before!  He just had so much energy and life to him! For his next feeding he drank 70 ml (2.45 oz) which amazed me!  Xavier was such a little piggy during that feeding.  He finally felt what it was like to be hungry and want to eat and devour it!

Later that day during rounds the head cardiologist came in to check and assess Xavier.  He said to Xavier "wow, you dress better than I do"  and because I was in such a good mood I responded, "yeah, and he has more hair than you do too!" :)  It's a good thing that the cardiologist and I get along so well!  Everyone in the room just laughed!

Well, my happiness for Xavier's progress was short lived.  The cardiologist then proceeded to tell me that I should not get too excited because this is just the "honeymoon"  stage with Xavier.  His body will show great signs of improvement and then problems may arise. That was it, there went my happiness for the day.  I knew he could be wrong, but it was like as soon as he said that I didn't see that vibrant Xavier for the rest of the day as I did that morning.  His feedings dwindled down to him eating nothing orally, his color was changing, he spiked a low grade fever, his eyes were glassy and he looked like he had been sedated, and he was very fussy due to having lots of gas.

I have spent quite a bit of time speaking with the other Heart Moms here to, in a way, brighten my day.  We tend to find humor in such little things in life right now.  They are full of encouragement for me, and even though they are more experienced in this whole process I can find little ways to put a smile on their faces as well. We had been discussing a lot about the program the hospital does, it's called "Beads of Courage".  For everything your child goes through the hospital gives you a specific bead.  Everything from, the helicopter flight, IV sticks, blood work, x-rays, eco-cardiograms, to even getting antibiotics.  There is one woman here who's son is only 7 months old and her sons string of beads is about 7 feet long!  I will post a picture tomorrow of what Xavier's Beads of Courage look like thus far.  It's a wonderful tangible way to share with others the experiences that he has gone through earning each and everyone of those beads.   

We are hoping and praying that we are moved out of the CICU tomorrow morning.  There is nothing medically keeping us in the CICU, we just need for a room to open up with a nurse to staff it.  Xavier still has his tube coming out from his chest that is draining the blood, and also 2 wires that go into his chest near his heart, basically an outside pace maker, and IV in his neck, and IV in his hand, and his typical blood oxygen wire, and we can't forget the feeding tube they just put in the evening.  Please pray we move on up to the 8th floor tomorrow!

One of our favorite nurses dressing Xavier in real clothes~I was a little scared at first to touch him with all the wires and his incisions.

Mommy and Son!  Feeding for the first time since surgery!