We woke at 4:00, got ourselves ready and right before we needed to leave, woke our sleeping girl. She couldn't figure out why we were waking her from a deep sleep, when she was sleeping so soundly. Our nerves were at an all time high. So nervous about the day ahead and what our little princess was going to expect. We drove to the Children's Hospital where we checked on at 5:30am. They quickly got us registered, ushered us back to the Surgery holding area. This is where I lost it. My tears began to flow and before I knew it, I was a sobbing mess. The sweet nurse just put her arm around me and told me "Mamma...it's gonna be alright. She is gonna be JUST fine"..
One by one, the Anesthesiologist, ENT, head OR nurse and Craniofacial Surgeon came in to speak with us. As we waited to speak with each of them, my nerves mounted. Mia was starting to get restless, as she had not had a bottle sine 9pm the night before. Finally it was time for them o take her back to the OR. Boy, did I cry..like a baby. Brian quickly ushered me out of the room and whisked me down to the Cafeteria to try and grab a bite to eat, before the day REALLY got hectic. We managed to eat a light breakfast and then headed up to the Surgical waiting room. As we were in the elevator, the ENT called our cell phone to tell us that he was done with his part, of putting in the tubes, and that Dr. Chen would soon be starting the palate closure. The ENT went on o tell us that he discovered an enormous amount of fluid in each ear and a thickening of the right eardrum wall. He is hopeful that the tubes will help, and we are to return to him for a post check in a few weeks, where he will conduct another hearing test.
Finally, about an hour and 40 min after the surgery began, we saw the head surgeon come out. He explained that he was done, calling the surgery "textbook" and just told us to expect alot of bleeding and swelling. Told us that we could begin to attempt getting her to drink after 24 hours and that whenever she began to drink, we could go home. They ushered us up o ICU just to hold us while she woke up, but the nurses felt like there was excessive amounts of bleeding, and paged the Surgeon to come back in and check her. He had already started another surgery, so we would have to just wait in ICU for him o come back and check. No kidding, as I sat there and held her, we blood soaked at least 3 towels. LOTS of blood! Bright red, pouring blood (sorry, I'm just keeping it real), pouring from her nose and mouth. She looked just pitiful. My heart ached for her as I held her. All I could think, was how she suffered alone after her lip surgery, in China. Left to lay in a hospital crib all alone after surgery and then quickly ushered back to her Orphanage, with little to no post-op care (which is why her lip scar was STILL infected when we got her...5 months AFTER surgery). While I knew this surgery was extremely painful for her, and took her completely off guard, at least I was there to hold her through it. I was there to console her, rock her, wipe her face.....she had a Mother....
After the Surgeon came by to check her, he quickly assured us all that while it was an enormous amount of blood, it was completely normal (yikes!!) , and would minimize within 24 hours. We were taken up to our room, where we settled in for the day. She spent most of the day zonked out. Slept alot, while we wiped her, cleaned her and rocked her. Later that night, my sweet Aunt came up, so that Brian could go home to be with the Boys. We have our in-laws in for the week taking care of the Boys, which is a huge help. The Boys were so sad at the thought of both of us being gone at night, and so he headed back to the house. Debbie and I managed through the night, taking turns holding our sweet girl and reassuring her that SOON, she would be feeling better.
Post-op Day 1
Well, our little girl is awake today and we have been given orders that we can begin re-introducing the bottle. In my mind, I Really thought she would take immediately to it..but, sadly, I was wrong. She began to kick her feet with excitement, each time she would see me prepare one, but once I would try to get her to suck, she would scream in pain. It was almost as if she couldn't figure out "how" to drink.Like she was going to have to be re-taught. Disappointed, I realized that this was not a good sign, and most definitely would not be getting us home later that day. She began to come around, cheering up, even giving us an occasional smile here and there. We spent the day taking turns holding her, rocking her and trying to play with her, when her spirits lifted.
Post-op Day 2
By 2 days in ANY hospital, you are Done. You are going on no sleep, bad food, no shower, and there is no end in sight to when you MAY get to go home. We are trying again, today, to get her to drink. After no success yesterday, we have asked for the help from one of the Speech Language Pathologists here in the hospital. They work with feeding therapies and can perhaps show us SOMETHING we are not thinking of . They came in with their bag of tricks....small medicine cups, syringes, cleft bottles, juice boxes, Popsicles, ice cream. One by one, we tried them all. NOTHING. She simply rejected them all. Totally defeated, i felt like she may never drink. They told us just to keep offering the bottle and that they would be back tomorrow to help us again. Tomorrow?? Yep, that lets me know we will not be getting out of here anytime soon. well, a few hours after they left our room, she got a little fussy. Since she was due for another dose of pain medicine, i figured that was the reason. Just to try, I offered her another bottle,. She worked with it for awhile, spitting out probably the first ounce or so..but then...she found her rhythm..and she drank.!!! I offered her bottles again every hour and a half or so after that, and thankfully, she continued to drink. She even woke at 3;30 am that night to drink. Thank you, Lord!!!! My heart raced and I could finally see the light at the end of he tunnel.!! Maybe tomorrow!!!!!
My sweet friend came up to visit us tonight. It was so good to have some company..and another set of hands!! She adopted 2 precious girls from China who were also born with clefts, so she had lots of stories for us. Our nurse that evening was actually one of her Daughters nurses when she had been a patient there years ago for her palate repair. Small world!
Post-Op Day 3
Miss Mia had a rough, restless night again, but managed to take a middle of the night bottle and even wake to take a morning bottle. This is great news!! We anxiously waited for the Surgeon to make his rounds around 8am, where as soon as he walked through the door, I began shouting.."She drank!!! She drank!!!". He was please to hear that she had finally began accepting the bottle and told us the ever so exciting news...that he would immediately go and write our Discharge orders. WOO HOOOO!! I sent my hubby a text, who was on the way to the hospital to visit us and brink us breakfast. He quickly called his Parents who were keeping the Boys at our house and told them the good news, that we were coming home today. We quickly packed up, took one last lap around the floor, saying goodbye to our nurses, and got the heck out of there!!!!
Can i just tell you HOW happy I am that we are home?? There is nothing like your own shower, your own bed, your own surroundings. period. In the hospital, we were literally confined to a rocking chair and couch. Since she had an IV in, she couldn't crawl or wobble around the room..so that meant us holding her ALLDAY and ALLNIGHT. Tough.
We settled in at home Mia instantly began crawling around, playing with all of her toys.. Since she cannot put ANYTHING hard in the mouth for several weeks, it meant putting up lots of toys and bringing out the soft loveys and stuffed animals.
Mia is really struggling with her pain today. It is difficult to get most of her liquid medicine in her, as she gets them through a syringe and manages to spit most of it out. because of her increased pain, she is starting to fuss over the bottle again. Since we have been home, she hasn;t drank as much as she did the last evening in the hospital. I think its a combination of pain and having to relearn how to suck. She tends to favor one side of her mouth, and so if I can get the bottle positioned on that side, we are good. But sometimes she is refusing to let me guide the nipple, and so she pushes it to her "bad" side, which results in screaming..and no intake. I am hoping that if I can stay on top of her pain management at home, she will feel more comfortable with drinking. If there are any cleft Mommas out there who battled this, please email me and give ANY tips you can share! I'll gladly take suggestions.
Aside from the minor hiccups with drinking, we are SO relieved to have this surgery behind us. We knew all along that when we brought her home, we would have this ahead of us..and now, it is behind us.. While we are fully aware of the treatment road she still has in front of her, for a good while, we have a break. She will now learn how to eat solid foods,speak, hear much clearer. Talk about a major improvement in her quality of life!!!
Tonight, she is tucked in her soft, comfy crib. She has her arm restraints on, her pain medicine in and took half of a bottle. Nervous about how the night will go, but I will be sleeping very close nearby, in case she needs me. We are praying for a smooth recovery and hoping that her pain subsides quickly.
I cannot begin to thank all of you who sent texts, emails, voice mails, messages of prayers and encouragement. It meant the world to us and we felt EVERY prayer. We are so lucky to have such an amazing support group, always rallying..always supporting, always praying....we love you all!!!
I will keep you all posted on Mia's progress and recovery. We meet with our Surgeon for or Post-op visit next week. He will examine her and let us know exactly when we can begin introducing foods.
Hope you have all had a blessed week!!
blessings from HOME,