Friday, December 12, 2014

With great power, comes great responsibility.

Here we sit, in the waiting room on the 17th floor. Bennet's surgery is over 1/2 way done.  I'm exhausted. Took an anxiety pill but am too sleepy now.

There is an unmentioned hierarchy in this waiting room. We got here early and all the recliners were spoken for so we came into the very back RMDH room and sat on a couch. Ate some Pop Tarts and lemonade and put on the Today show.

I had to stop there. I was falling asleep and couldn't make sense. We waited and got good report after good report. Everything went as planned. We were finally able to see him and it was overwhelming. I had trouble finding where there was baby under all the tubes and bandages. The Rn told us what they all were but that didn't really help. It was just too much. We sat there and laughed. We laughed about the tubes, we laughed about our nurse that looked like Jesus. We laughed at my puffy feet and my mom posting total lies about what was happening on Facebook so we were checking Facebook to see what we were doing. We surrounded our baby with joy and laughter and I didn't cry. Ok, maybe a tear or two, but no body wracking sobs that were certainly but a baby whimper away. But he laid quietly, and we laughed.

I had wished for a plan, an instruction book on how to do this. How to act, the words to say, the choices to make. But now I think I'm glad we had to make it up as we went. We chose joy over sorrow. We chose hope over fear. We chose glory to God over despair over why us. We chose to give our child to God and let his will be done over ..... well, there wasn't really another choice there was there. Your will be done on earth as it is in heaven.

So many thousands of people prayed for my son today. I can't even fathom how many prayer lists, churches, quilting groups, sewing machine collectors, people in shops, people we've never met, all praying for OUR baby. And God heard them. I think I'm glad there was no book.

There is a social hierarchy in a waiting room. Some people have been there for months and some wander in unsuspectingly and plop down in prime waiting room real estate. Us for example. Jeremy was taken aside by the receptionist and informed that we had staked the prime TV front property and to leave our stuff there or we would lose our spot. We have complete TV control, a place to lie down, and access to the pizza at it's hottest. I did lose control of the remote at one point and had to watch HGTV but their baby was sicker than ours and wasn't doing as well so I figured it was the least I could do. We ended up watching Ghost because it's the movie that crosses all boundaries of language and situation to touch hearts. Also, who doesn't like Patrick Swayze?

Jeremy thanked the lady that brought us pizza from the RMDH. She looked surprised. No one else thanked her. Some complained. I think pain takes away manners and I can understand that but I'm glad Jeremy showed gratitude for the service and comfort they offered us.

Wednesday, December 10, 2014

Well THAT escalated quickly...

This morning I woke up excited to get to bottle feed Bennet again. It was so wonderful getting to be a mommy and satisfy my baby. I got dressed, ate breakfast and loaded up in the wheelchair. I collected my giant Bag O Milk I had pumped for him amongst praise from the nurses and went to NICU. They wouldn't let us in. The unit B they just moved him to with the other cardiac babies was in lockdown for a surgery. I was beyond sad. Good thing I started on drugs already.

We wheeled back silently to our room when I crawled into bed and slept. Woke up and Jeremy said they had called and it was back open so without ordering lunch we ran back over with more milk. I had missed the 12 feeding but would be there for the 3:00 bottle. We pulled up to his bad and there were several people around and they started in giving us info. His o2 stats had dropped overnight, the cardiology team met and decided to do the balloon septostomy today, like now. So no more feeds, he would be intubated, sedated and oh yes, by the way, his switch surgery is Thursday. I sat for a minutes while she continued talking and I had to stop her.... wait, Thursday? big surgery, not next week? ok. ok.

Things started to fly then. Dr's in and out, informed consent forms that Jeremy signed after we discussed all the things that could go wrong. She had a great sales pitch though that she was a perfectionist and didn't allow things to "happen". I like that. More Drs. more equipment. A portable X-ray machine, a rolling table of sterile tools, I sat back in my wheelchair and watched to see how much I could take. I watched the nasal Versed slowly calm him down and make him restful. I took pictures constantly. Of the Drs, of my baby, of the overwhelming machines. I wanted to remember it all.

After they intubated his limp little body Jeremy wheeled me out and I started to feel the waves crashing over me. We went back to my room and right back into bed. Ordered lunch this time since it was 4. Jeremy went downstairs to get pizza delivered and I had a salad. Shortly after we ate the phone rang and they said they stopped the procedure. This was news to me since they had seemed pretty darn committed when we left.

We were to meet with the cardiologist at 6 so jeremy rested and I sat and then we went. Arriving there Bennet was still intubated but resting very quietly for the first time. My poor guy. When they intubated him his O2 stats went up from lower 70's to upper 70's and then Dr Fraser came in early from his surgery to watch and said he would be fine on those numbers until he did the surgery on Thursday. I'm glad. Maybe tearing a hole in my babies heart would have helped, but it would mean another repair Thursday and longer with his heart stopped.

We sat and just stared at him for awhile sleeping. We will meet Dr Fraser later today I think and Thursday most likely my baby will have his heart changed. I'm falling alseep now. More tomorrow. almost there..

Monday, December 8, 2014

Bennet day 4

I've been in a bit of a daze but wanted to type while I'm feeling so happy. Bennet is doing so well today. He woke up with a fever of 101 so they decided not to do his balloon septostomy until maybe Wednesday. I was miserable in pain and depressed in bed while Jeremy went to Katy to get our stuff and do some laundry. When Jeremy came back NICU called and said Bennet was going to be able to eat and I wanted to give him his bottle so I got dressed and ate lunch just in time for Psych to show up finally and interview me and give me good drugs to help with my panic and depression. When they left we rolled to NICU and there I got to give him his first bottle that he drained in 3 minutes and got to support him with my hand. The second bottle three hours later he wasn't interested in but then he had to move his bed to a different ward so we left it unfinished. The nurse said he took his 9 o'clock bottle in less than a minute though. I'm so grateful for minutes of mommy time.