Family pictures

Well we made it home, only two days longer than expected. I'd love to say Hazel is doing great but she is still awake after almost 12 hours of being awake with only 2 very short naps in there. It was a long night. Hazel's crazy experience in the hospital was probably due to a reaction to one of her narcotics. The drugs most likely caused the muscles in her chest to seize up causing her to stop breathing. This happened three times in the night but she was intubated the first time. I'm quite aware that when I talk about anything medical I sound like a fool but I know Chuck would never get around to blogging this. Right now she is only taking tylenol for pain which I think is pretty amazing considering what she's been through the past few days.

Jack is much happier now that Mom and Dad are around. I heard he was pretty terrible while we were at the hospital. He keeps pointing to Hazel and saying, "owie." He was excited to have Hazel home. He keeps looking at Lucy's head. I'm not sure why, maybe he thinks she should be just like her sis.

Lucy is still ity bity. I can't believe she's two months old. She's a super happy, smiley girl. She's only had one blue spell since the last time we went to the cardiologist. I'm hoping her blood oxygen levels are up. Her next appointment is Monday morning.

In a couple hours we're going to go back to the hospital to get Hazel's helmet, I hope she doesn't hate it.

Hazel's Helmet Scan

These pictures were taken last week before Hazel's surgery. She looked too dang cute. I had to post them. So funny.

Post-op

Last night was tough, really tough. We have the same nurse tonight that we had last night. My mom and her sort of bonded over the drama of last night. My mom asked her how often she has nights like that one. She looked at us a little hesitantly and said, "Last night was my first." When she left the room I asked my mom if she was new. My mom told me she isn't.

I still feel a little sick to my stomach thinking about last night. I wasn't here. I was at home with Chuck about to go to bed when I heard my phone ring. I missed it. I looked at the number and recognized it as the hospital. I listened to the message and heard my mother's voice in a forced calm. She told me there had been an emergency with Hazel and that I needed to call the hospital. She said I needed to get Chuck to call our neighbors and have them come over to watch Lucy and Jack. That was it. She gave me the number to call. I wasn't able to remember the number so I had to redial my voicemail and go through several other messages to get there. I apologize if you called me recently and left a message, you've probably been deleted. When I called my the hospital it was my mom who answered. She told me to come to the hospital immediately with Chuck. She said Hazel had had a seizure and had stopped breathing. Twelve people ran into the room and intubated her. My mom was watching when her chest stopped rising. She thought she was dying. As we drove to the hospital I thought she was dying. I was told she was having an MRI to determine if she needed to be operated on. They did an ultrasound instead. At this point Chuck and I were back at the hospital. We stood and waited around her crib along with her surgeon and nurses on total silence. Our surgeon was wonderful. We were there for more than an hour. The results of the ultrasound were good and ruled out swelling on the brain which was the big fear. After much reluctance Chuck and I went back home to get some sleep. I made my mom promise to call me if anything else happened. This morning she told me that shortly after we left, she started having what looked like seizures again and her heart rate had jumped to 211. They did another CT and found nothing. I was pretty mad at my mom for not calling but I would have never made it through today without sleep. They still aren't sure what happened exactly. It may have been a negative reaction to one of her drugs. We really don't know.

Hazel has been doing much better today than yesterday. She has been pretty zonked out from all the meds she got last night. In a way, this was almost a blessing in disguise. After her surgery yesterday she was in so much pain. It was horrible. She moaned and cried for hours. When I held her she'd arch her back and only make it worse. But today her pain has been much better. I love her so much. I miss my other kids. The past two days I've kept thinking, I hope we never have to do this again, but then I remember we do.

I wish I could say I've handled this with grace and faith but I've been a mess. I have to believe that sometimes it has to be enough just to get through. I've had a lot of talks with my family about letting your trials change you but for now I'm just trying to make it through the day without taking it out on innocent bystanders. I hope in time these experiences do make me better. It's so sad when people become angry at God for the bad things that happen to them. I look at my daughter and all the bad things that are happening to her and I realize that I did this to her. I brought her into a world that is full of pain. I knew she would suffer but it doesn't mean I don't love her. If I've learned anything from the last year it's that my Heavenly Father loves us and he answers prayers. I've always known this but now I really know it. I have felt the prayers of others on my family's behalf. I would hope everyone experiences the power of being prayed for once in their life. Thank you for your prayers they have been answered,

update

I decided it was probably time I posted again. Hazel's surgery that was supposed to happen on Monday was postponed a week. After what feels like the longest week of my life, it's almost Monday again. I have been a total wreck the past two weeks. The anticipation has been much worse than I expected. My poor family is taking the brunt of my mood swings. Today my mom and I went to the hospital to redo her lab work. My mom ended up sitting with her because I hate watching my kids have their blood drawn. I was glad she did because they ended up needing two people to hold her and one person to draw the blood from her head (they couldn't find a vein in her arm.) She's a trooper. I'm dreading Monday but I'm glad to have this finally over with.

The girls appointments

Lucy: We took Lucy to the cardiologist this week. Lucy's blood oxygen saturation levels were down which isn't good. She has been having blue spells when she cries too hard so I was expecting her levels to be a little down. Normal is 99%-100% when she was born her levels were in the mid 90s and now they are about 85%. When Lucy was 4 days old she had a procedure done where they opened up her pulmonary valve by ballooning it. They were hoping this would increase the size of her pulmonary artery. They told us she may need to have this procedure done again. When we go back in three weeks they'll schedule that if she needs it. We also talked about the possibility of the shunt surgery. This was the surgery she was supposed to have when she was first born. We're hoping she won't need that and I'm thinking she probably won't. Overall she's still doing pretty good and has been gaining weight really well.

Hazel: This girl is drama! I took her to get her shots yesterday afternoon and she's pretty much been sleeping ever since. She had a bunch of doctor's appointments this morning and hated all of them. They had to draw blood and I made my mom hold her. I can't stand watching my kids having their blood drawn. We met with the helmet people and had Hazel's head scanned. This was really unpleasant because I had to keep her head from moving and she really hated it. She'll have her head scanned on wednesday and she'll get her helmet friday. We found out today that our doctor has only been at this hospital for 6 months and has only performed 4 of these surgery while he's been here. Before he came to Kansas City he was training with the doctor's who invented this surgery. There aren't many places around the country that do this less invasive surgery so we feel very lucky to be here. We were initially told it would be same day surgery but today they told us she will be spending at least one night in the ICU. I'm hoping Chuck can take another day off.

The Art Museum and Topeka

Our new stroller. We love it. It fits both carseats so we don't have to take them out.

This is the only picture we took on our jaunt to Topeka. Have a good look at the center panel. 50 chicken McNuggets for $9.99. 50 McNuggets?! Has anyone else seen this before? We obviously hadn't, but it doesn't sound like such a bad deal...

The Backyardigans!

During our amazing, one-day trip to Minnesota, we went to the Mall of America for a couple of hours. And guess who we saw! Pablo and Uniqua! You would think that Jack would be so happy to see characters from his favorite show, but that wasn't the case...

Uniqua is our favorite.

Blessing Day

The girls were blessed in church this past Sunday. Each girl was named after a Grandpa. Lucy Blair was named after her paternal grandpa and Hazel McKay was named after my father. Instead of having Chuck bless the girls were asked the grandpas to each bless the girl that was named after them. It was really special and I'm glad we did it this way. Years ago Chuck and I joked that if we ever had twin girls we'd name them after our fathers.

Can you tell who is who?