Hope had her lip and nose closed during her first surgery, but her palate still remained open. It's like the roof of her mouth never closed shut and her sinuses and nose were all connected to her mouth. Dr. Barcelo at the
International Craniofacial Institute told us that everything she needed was "all there" but that it just needed to be put in the right place. Since there was only two days of school left, we decided to take the boys out early and take the whole family to this surgery so we could all be together.
Johnny had his kindergarten graduation on the night before...along with one of the most severe tornado threats we've ever had in Oklahoma. They kept predicting this "perfect storm" to form and tear across oklahoma all while we were preparing for the trip and graduation. I asked Johnny if he wouldn't mind if we stayed home to be safe but he wasn't going to fold that easily. He LOVES tornado warnings. He LOVES to hear the sirens blast and to holler at everyone to take cover. It seemed only right that his graduation would involve a warning to his delight. The storm was horrible and it produced horrible results. Before it had even reached us we already heard reports of deaths in Western Oklahoma. The stories of these storms this year are devastating.
We got to graduation just in time, they shortened the program and cancelled the reception, which allowed us to get home and into the "safety" of our bathroom. Earlier I had went down the street and met a neighbor that I had heard had a basement. I was prepared to give her a truthful sob story about how we have 5 kids and we have no underground shelter and could we please come get in your basement with you tonight but before I got into the sob part she invited us to join them if necessary! What awesome neighbors! But since the tornado warning was downgraded to a bad storm, we opted for our bathroom instead.
We got up early Wednesday morning to drive to Dallas to make our pre-op appointments. Blood drawn, examiniation, ear tube check, etc. After all the appointments we went to our favorite restaurant in Dallas then went to our hotel and HoHo went to sleep while Husband took the rest of the kids swimming. He said Lily is a fish. And while she is scared of the water, she fully trusts him, so she was able to practice swimming so much she can almost swim!
I woke Hope up at 3:30 for her last bottle of formula for surgery, and then gave her apple juice at 8:30.
Everyone here ready for the surgery!!!
The surgery was scheduled at 11:30 but postponed to 1 but Hope did great.
Aunt Tina (aka Uncle Tuna as Lily calls her) came again and helped out so much!
Daniel and I took her back and they gave her medicine to sedate her. She was fading fast but still managed to fainly squwak at Husband like she did on surgery number one! It was precious and means a lot to Husband. The anestisiologist scooped her up and away she went. We went to the waiting room, grabbed our kids and my sister and headed for the cafeteria to eat lunch. (Later, Hope's speech therapist thought it was funny that we went to lunch while she was in surgery! What are you gonna do with four other kids to feed! LOL! I guess we never thought about it!)
While we were eating in the cafeteria a man came on the loud speaker and got everyone's attention. The place got silent as he announced a code blue on the pediatric floor 3 surgery (exactly where we just left Hope). We all just looked at each other. We didn't panic but we all got really somber. My sweet sister tries to put us at ease, I realize we have all the kids watching, Daniel bows his head to pray, so we tell the kids what code blue means and pray. Phoebe is super concerned at this point. Johnny is checking the monitors and looking for the icons beside Hope's name. scapel means surgery, stitches mean sowing up, bandaid means almost done. We resume eating. Then the call comes again. UGH! I hated the feeling. I am a believer and I believe in healing and in prayer. I wonder if I should've just ran to the surgery floor and started praying loudly for this "code blue baby" but I didn't. Later we found out it was a baby having heart surgery, and her heart did stop beating but the doctors were able to restart it.
Christina later took our four other kids to her house and Daniel and I waited for the surgery to be over. Dr. Barcelo finally appeared with a smile on his humble face. He said her palate was closed, she has perfect alignment now, and that her muscle was healthy and she had plenty of it to close well. Great report! Hallelujah! We love her surgeon! After he left I watched him walk down the hall to the elevators. Another doctor came from another hall and they almost bumped into one another. Dr. Barcelo took a step back and waved him to go first. It made me smile. : )
After about 20 minutes our names were called. We went back to the operating room recovery area. Hope was laying there on oxygen asleep.
I knew as soon as she woke up from the sedation the worst part would start...the flailing and jerking and screaming as the anesthesia leaves her body. At one point during the flailing part the nurse had to remove a stitch that was holding her tongue in place that is necessary during surgery. As soon as she cut it Hope threw her face into my shoulder. It was either the removal of the stitch or the head throw that made her start bleeding from the mouth. A lot. So much that the nurse was asking another to page the doctor because it wouldn't stop as she suctioned it. I just held her tight and Husband and I kept quite and prayed separately. Finally it stopped and the doctor wasn't needed. UGH!
After two hours we finally went to her recovery room. Hope did great in the hospital. She was in a lot of pain and could never get comfortable but handled it well. We tried every position, she slept on me some, in the bed, with Husband in the rocking chair. It was just an endless 2 days of napping before waking up to pain or vital signs needed. She didn't drink really anything at all the whole time. On the second day i told Dr. Barcelo that although she wasn't drinking that I really felt like she would drink once she got outta here. He agreed. We had a great conversation about missions, cleft surgeries in Africa, starving children, China, chinese physicians, and more. Love him.
Husband found these cupcakes in the hospital and said Oprah and Ellen have given them high ratings. It seemed only right to eat cupcakes! They were definitely not HopeCakes or LilyCakes though!
We all went home to the hotel for one more night before coming back home on Sunday. You could tell Hope was happy to be home and sure enough she did start drinking fine on day 3 after surgery.
Back at home and feeling good! She said the surgery made her tougher!!! We are so grateful everything went good. There is always a chance that Hope will develop a fistula in the roof of her mouth which is a small hole that does not shut fully. This is not rare after this type of surgery. So we are praying that her mouth will heal great and this won't happen. She wears her no nos to sleep in and most of the day now so she won't stick her finger through the roof of her mouth. But we let her have free arm time and she tries her hardest to mezmorise us with her hand motions and then sneak her thumb in her mouth! She is so precious!
