13 more hours

I know God will not give me anything I can't handle. I just wish He didn't trust me so much.

-Mother Teresa

2 more days

We are meeting with the surgeon tomorrow to go over the surgery, recovery, and risks. We've known about the heart surgery for over 5 months, but it's still so hard. Handing him over to the surgeons on Thursday may just be the hardest thing I'll ever have to do. The big "what if" just hangs over your head....especially when babies in rooms all around us seem to be disappearing. I keep telling myself that he just has to be okay...even with all his complications and crazy quirks. Too many people are hoping and praying for him, he just has to be a success story. The world needs his cuteness! Everyone think good thoughts on Thursday!

6 more days

Just a little shout out to my husband who has been making me smile for 5 years now. He remains positive when I'm feeling negative and he stays hopeful when I feel hopeless. He has made me laugh through all this. Sometimes when the Cardiology fellow walks by, he hums "For He's the Jolly Good Fellow" and it cracks me up. Check out the picture of the night we met...the only picture we have when we're not standing beside each other.

1 week

Even though we had some Gtube troubles last night, Gabe is continuing to do well. He's bulking up with the continuous feeds and is breathing well with the high flow oxygen. They did draw some labs and his TSH (thyroid stimulating hormone) level was elevated. They are waiting for addtional thyroid labs to come back, but they went ahead and started him on medication for it. Down Syndrome babies are at higher risk for thyroid disease. We'll see if the other labs come back confirming the diagnosis. Gabe is in a very good mood today...too cute. I'll take pictures later. Surgery is officially confirmed for next Thursday, Oct.1 with Dr.Manning.

Waiting for the inevitable

They moved us back to CICU so Gabe could be on high flow oxygen to help with the tracheo malasia and give his lungs a little rest till surgery next week. We did some preop things today like get a PICC, get labs drawn, check to make sure he doesn't have ORSA, etc. They also gave him some blood b/c his hematocrit and hemaglobin levels were alittle off...he looked a little pale. The CICU attending came and talked to me along with Pulmonary. She said that they are going to biopsy his lung tissue during the heart surgery to get idea of the extent of any lung damage, if any, from the pulmonary hypertension and edema. She explained how Gabe is quite the conundrum b/c his oxygen saturations have always been all over the place...it's like he was born with shunting to his lungs and pulmonary hypertension when it's usually a gradual process. She explained that she is anticipating 3 potential outcomes after his surgery. 1. They are unable to extubate due to his airway and have to do a trach and potentially a vent at night. 2. They extubate, but his pulmonary status isn't up to par. They give it a couple weeks and then do a trach till his lungs heal. 3. He is extubated and shows gradual improvement and pulmonary addresses any tracheomalasia issues at a later date and his heart function is normal. Gabe is in the drivers seat and we'll have to see where he takes us. In the mean time, we are trying to enjoy this week with him and play with him as much as possible. Check out the pictures of Gabe and I working on his neck muscles.

The big day!

I had a mini meltdown during rounds this morning. I just got so frustrated with Pulmonary and Cardiology not talking to each other. I cried alot. I think it was my first test in advocating for the little guy. They finally arranged for a meeting with everyone today and the decision was made to repair Gabe's little heart next week. That's right! The big heart surgery next week....I think mommy needs a shot of tequilla to calm down. He does have lung disease due to the pulmonary hypertension and fluctuating oxygen saturations. They plan to do a high resolution CT when Gabe is intibated before surgery to get a clearer picture of the extent. They are expecting his recovery to be longer than the typical AV Canal. After the heart is repaired, they'll begin to look at his airway issues and see how they are affecting his oxygenation. They will be deciding soon who will be doing the surgery and the exact day. We'll meet with the surgeons this week. Everyone think good thoughts!

Side note* Children's implemented visitor restrictions due to cold/flu season. No more than 2 people in a room and limited to Caregivers only. I'll keep the pictures and updates coming though so everyone knows how he looks and how things are going,

lazy weekend

Pulmonary came by and talked to Justin and I yesterday about some options in treating Gabe's tracheo malacia. The first option is to use forced air to keep the floppy airway open. This can be done with high flow air through a nasal canual or CPAP. Only problem is, you can't go home on high flow and the smallest CPAP device they make for home use is for 6 month olds, and it's not a guarantee to work. The second option is a surgical procedure (very long name supra glota plasty something or other) which basically means they would scrape away the tissue that keeps collapsing in his airway. A potential problem with this is that it only works when the collapse of the airway is in a specific part or if collapses a certain way. The doctors will be reviewing his scope to see if he is a candidate for this. The third option is a trach...we all know how I feel about those. Cardiology, Cards Surgery and Pulm are all going to talk either tomorrow or Tuesday to figure out if his heart should be fixed first or his airway. What a rollercoaster all this is. It's been pretty quiet around here this weekend. Gabe enjoyed the Bengals game today much more than last week's game.