"I HATE You!!"

My precious Sarah obviously learned something new at school today. She got angry at me about something (can't even remember what made her mad) and she started yelling at me, "I HATE you! I HATE you! I HATE you!" My, my, such venom coming from my usually happy 4-year old!! She sat in time-out quite a while until she calmed down. I must say I was thrilled about how clearly she said her words. Her p-flap has made such a difference in her speech!!

Sarah's p-flap surgery

Pre-Op: Monday, 2/9, we had our pre-op. Our appointment was at 10:30. Dr. Stal told me that of all the surgeries he performs, this is the most dangerous because of breathing issues that might arise (gee, thanks, doc). We were done at Dr. Stal's office around 11:30, but then we had to go pre-register for surgery. We did not get finished until 1:30. Sarah was a real trooper and behaved so well today!!

Surgery Day/Day 1: We left the house around 8:00 AM on Tuesday to check in at TCH by 9:30. We got to the check in area around 9:32, so we just missed it. I was worried Sarah was getting sick because she woke up with a cough, but the nurse checked her out and said her lungs sounded fine (I think she has allergies because she sometimes wakes up with a cough and then doesn't cough again all day).They took us to the surgical waiting area around 10:30, where I had to change Sarah into scrubs. She was fine until then, but when I changed her she started crying. Her surgery was supposed to be at 11:30, but it wasn't until about 12:15 that they came to get her. The anesthesiologist tried to convince her to go back with him, but she wouldn't budge. They let me go back with her to the operating room as she clung to my neck. I had to put on scrubs and a hat. (Good thing I've lost weight so I actually fit in the scrubs).I got to hold her while they put the mask on her face. After about a minute, she was out and I left. They told me the surgery would be about 1.5 hours, but after about an hour, they were done. Dr. Stal said her palate was a mess. He had to open it up and fix part of it and tighten some muscles. Then he did the p-flap (basically a flap of skin from the back of her throat to the top of her palate). He believes she now have the structure necessary to speak more clearly. (Gosh, I hope so!!) Dr. Stal said the first 2 days are brutal, but they do improve quickly after that.About 2:00, they let me go to the recovery room. She was shrieking in pain and lashing about. This just broke my heart. She had 2 tubes in her nose, one to keep her breathing passage open and the other was a drain into her tummy. She also had "no-nos" (arm restraints) on her arms. She was not a happy camper.The nurse gave Sarah some more pain medicine and she finally settled down. She did this several more times while we waited for a room on the PCU wing (Progressive Care Unit). The anesthesiologist finally agreed to let the nurse give Sarah a sedative so that she would rest. After it went into effect, we went to our room on the 7th floor. (Sarah is being given Tylenol with codeine every 4 hours and morphine every 4 hours for breakthrough pain)Throughout the night Sarah would rest for about an hour, hour and a half, and then wake up screaming in pain. She finally had to go potty around 10:00 PM (after not using it since 10:30 in the morning). Needless to say, I did not get much sleep last night. Around 2:00 AM I climbed into bed with her to try to get her settled and rested about an hour.

Day 2: At 5:45 AM Dr. Stal's resident came to check on Sarah. He removed her drainage tube and looked at the throat. He said everything looks great.Today has been a little better. She was able to sit up and watch videos for 30 minutes to an hour before conking out again. She still screams in agony when her pain meds wear off, but she is much more alert today. But she refused to drink anything so we probably not be released tomorrow afterall. Sarah mostly slept through the night. She woke up about 3:00 because she had to potty. After that, she was in pain so I called for the nurse to give her her pain medication. It took over 30 minutes and 3 calls to get him here (grrrrrrr.....). Then about 20 minutes after she had her medicine, she started throwing up. Again, I called twice for help and no one came. (I am definitely not happy with the night staff!) About 4:30, Sarah went back to sleep.

Day 3: At 6:00, Dr. Stal's resident came to check on her. He removed the breathing tube from her nose. He said her throat looked good, but he is concerned about her nausea and that she won't drink anything. He gave her something for the nausea and told me she can't be released until she starts at least drinking without throwing up. He said that the worst of her anestesia should be through her body today which should help the nausea. Sarah is feeling much better today and is watching a "Caillou" dvd as I type this. She let me leave the room twice today so I could go get something to eat (she usually does not let me leave her side). She is smiling today and feeling much better, but she is still not drinking. Ugh!

Day 4: Sarah is feeling better today and sipping on a little bit of chicken noodle soup. The doctor came and asked if I thought she would drink more at home. He said if I wanted to go home, and thought she will drink, he will release her. He said of all the kids he's performed p-flap surgery on, Sarah has been at the hospital the longest. Great!! Not a record I wanted her to have!! Around 2:30 PM we were released.

Days 5-8: Sarah drinks more day by day. She still does not have her appetite back. Sleeping is now an issue. She wakes up from nightmares all night long. I think she is still scared from being in the hospital. By day 8 she is pretty much back to her normal routine.

Day 9: Post-Op appointment. All is well and Sarah can go back to school tomorrow. Yippee!!

A Visit to the Speech Therapist

Today we went to Texas Children's Hospital for a video fluoroscopy, also called a palate study. Sarah, my little loud-mouth dynamo, would not talk at all for Kris, the speech therapist. Talking is essential for the study. They needed her to say things like "yellow yo-yo", "wow wee" and "really low". She refused to say them for Kris. Kris would leave the room and Sarah would say them loudly for me. Kris said the study would be pointless if Sarah was not willing to cooperate, to which I agreed. Kris knows our local speech therapist, Lesa, and they have talked in length about Sarah's speech issues. Using this information and what she did hear Sarah say (quietly and through the door), Kris went to go talk to Dr. Stal. Dr. Stal decided to do a p-flap surgery on Sarah to help her speech. First we have to get Sarah's tonsils out. 3 months after the surgery, Dr. Stal will do the p-flap. I am excited to be moving forward.

Visit to the Dentist

Today I took the girls to the dentist for a routine check-up and cleaning. It was Sarah's first visit. I was worried she's be scared, but she did great. Our dentist is wonderful and we love her to pieces. She doesn't let parents go back until the end of the check-up so I had no idea what was going on. First Katie went back to get her's checked. Then Sarah went back. After she was done with Sarah, she called me back to discuss their teeth. First she showed me Sarah's x-rays. My poor baby has 4 cavities. 3 are in the front on top and are due mostly to her cleft (her teeth in the middle are scrunched together) and the 4th is in her back molar. We decided to pull 2 of them because it would be tough to get crowns on them and 2 will be filled. I was kind of surprised Sarah's teeth were such a mess because she absolutely LOVES brushing her teeth. When Dr. L was done discussing Sarah's teeth, I braced myself for Katie's report (Katie hates brushing her teeth and has already had a lot of work done on her teeth~ 9+ cavities in the past). Shockingly, Dr. L said Katie's teeth looked great!! Praise God!! And that she has gotten her 6-year old molars, which may explain her crankiness lately. I have to bring her back to get sealant on her new teeth, but otherwise all is well. Poor Sarah will go back in 2 weeks to get sedated and have her teeth fixed.

Adopting a child with a cleft

Part of the reason I share my blog with the public is so that maybe more people with consider adopting a child with a cleft lip/palate. Cleft lips/palates are not life threatening, nor do they affect intelligence. My daughter does not speak clearly, but I do hope she will speak clearly in the future. She may never have perfectly "normal" speech and that is just fine with me. I was shocked to recently read a post from a person considering adopting a child with a cleft. Her main concern was that the child may never speak clearly. Wow. So many children waiting for families have much more serious issues than speaking clearly.

Sarah had her lip repaired in China. Her palate was repaired here. When she is 4 she will have a lip revision and have her collumnae lengthened. When she is 7 she will have a bone graph. That may be it. Surgeries are tough to get through for all of us, but as parents, we do what we have to do.

Sarah attends speech therapy, but so do so many others who are not cleft-affected.

If you are considering adopting a child with a cleft, do plenty of research, as I did. And then make your decision. Adopting Sarah was one of the best decisions I ever made.

So THAT'S the problem!!!

Because of her cleft lip and palate, Sarah still does not talk. She babbles all the time, but we really cannot undestand much of what she says. She tries, and can make a few sounds now, but she is still way behind. I think Katie realizes that Sarah is old enough to talk and wonders why she doesn't. Yesteday she told me, "Mommy, I think Sarah is speaking in Spanish!!" Very funny. Today Grandma was talking to Sarah (who does understand everything we say) when Katie told her, "Grandma, Sarah doesn't understand you because she speaks SPANISH!!" Very funny, indeed!!

Post-Op Appointment

We had a follow up appointment with Dr. Teichgraeber today. He said Sarah's palate looks great. He wants us to meet with the whole cleft team at the end of the year, when Sarah will be 3.25 years old. He still thinks he will do a lip and nose revision when Sarah is 4. He wants us to go full steam with speech therapy since Sarah is so far behind in that area. Sarah receives speech therapy from the ECI program, but I think I will also get private speech therapy for her starting in the summer.

Sarah~ 12 days post-op

12 days ago Sarah had her palate closed. She is just about back to "normal" now. She will again eat almost anything and is sleeping through the night. She is off her pain medicine and doing well. We had our first follow-up appointment with her surgeon on Thursday and he said she is doing well. He said it will take about 6 weeks for her soft palate to soften, which is when we should begin speech therapy.

The day of Sarah's surgery, she was much worse off than I had anticipated. By day 2, she was much better and by day 4 she was back to her old self, except she did not eat or drink. I hope by sharing our story, others who are considering adopting a child with a cleft lip and palate will go forward. So many people on the listserves say that they cannot handle the surgeries or speech therapy. I think the vast majority of you can. Sarah is such a blessing and I am so thankful she is my daughter.

Today is my nephew's birthday. Charles is 8 today. Happy Birthday, Charles!! We love you!!

Sarah's Palate Surgery

Sarah's palate surgery was Tuesday, February 20th. I woke up around 2:00 AM that morning (after not really sleeping at all that night anyway). About 4:15 AM, I scooped Sarah out of her bed and put her in her carseat. We had to be at the hospital at 5:30 AM. We got there around 5:10. The place was deserted. About 5:30, the person who ws supposed to check us in got there. We were taken to a pre-op room about 6:30 AM. Sarah was given her "happy juice" and proceeded to spit it back up. Great. She was not groggy at all. About 7:15, they came to take her to surgery. I went back to the waiting room to wait. I met some very nice families who were also waiting. The first family was from Beaumont. Their 4 year old daughter was having dental surgery. Another family had an 18 month old who was also having surgery. About 10:30, Sarah's surgery was done. Soon after that, I was taken to the recovery room. Sarah looked worse than I had expected. She screamed in pain. My poor baby. I rocked her in a rocking chair and she settled down. Grandma got there soon after I did. Of course, Sarah wanted Grandma to hold her so she did. About 2 hours later, we were taken to our room. The rest of the day is pretty much a blur. Sarah was in a lot of pain. She was on morphein most of day 1. My mom stayed most of the day, which was a great help. About 7:00, she left to go get KAtie from Aunt Wendy and Uncle Jim's. Sarah slept most of the day and night. She woke up a few times, but was given pain medinine and quickly went back to sleep.

Day 2: Sarah was a bit more alert today. She mostly slept in my arms and ws still on a lot of pain medicine.

Day 3: Sarah was much more alert today. We went to the playroom and played for a little while. We also took long walks around the hospital wing. She only had morphein a couple times today.

Day 4: Sarah was very much back to her old self. She was very chatty today and even sang to me. However, she is still not eating or drinking so we are stuck here. My mom, daughter, Katie, brother, Jim, and sister-in-law, Wendy surprised us with a visit tonight. It was so nice to see them. Sarah was thrilled to see all of her "people".

Day 5: Sarah finally started eating and we got to come home. We left the hospital around 3:00 PM. Sarah was so happy to be home. She woke up twice and I gave her some pain medicine.

Surgery is scheduled for February 20th

We met with the ENT yesterday to see if Sarah needs ear tubes. She has a lot of fluid in her ears, so she does need tubes. They will do them the same time as her cleft palate surgery. Her surgery will be February 20th. Please keep her in your thoughts and prayers.

Appointment with cleft surgeon

Sarah had her first appointment with a cleft surgeon today. We're going to use Dr. Teichgraeber of the UT Texas Cleft & Cranifacial Team (www.txcleft.com ) Our visit was brief, but I do like him and I have heard good things about him. We have an appointment with the ENT on the team on Monday to determine if Sarah needs ear tubes. If she does, we will have her palate closed and her tubes inserted at the same time. Hopefully next week we will be able to schedule her surgery.

She does amazingly well despite her open palate, but to help in her speech development, it needs to be closed. Eating and drinking have not been a problem for Sarah.