My Brave Girl...
While we were in surgery prep waiting for the dreaded moment, her surgeon came in for one last look before the procedure began. I would say he is 68 at the youngest, based on his curriculum vitae, which I have searched to “check him out”. He comes in, looks at Anna, and tells us that her cleft is the widest he had ever seen and that she would be a “challenge…but I am confident I can do this.” Okay, as if I wasn’t nervous enough. No one wants their child to be a “challenge”. It wasn’t long until the OR nurse came in and, thankfully, Anna was fascinated with her scrub hat. So I got my kisses and out the door they went.
We were taken to the family waiting area where we stayed for about 4 ½ hours. We began with a full waiting room and now…we were the last family waiting. Finally, the receptionist came and told us that she was out of surgery and doing well. She said that Dr. Roberts would be out shortly to speak with us. Rodney and I were totally focused on the double doors. He came out and told us it was a success. He was able to close the entire hard palate, which was what he wanted to do, but wasn’t sure there would be enough tissue to do…thankfully, there was.
Anna was in recovery and I was on pins and needles to get back there with her. The recovery nurse came to get me and told me she was starting to wake up. As she and I walked back, I could hear Anna crying. When we got to her, she was thrashing around her head and hands furious. The nurse handed her to me and she looked so pitiful. Her little face was so swollen, there was bloody drainage from her nose and mouth, a thread was coming out of her mouth, her arms in little restraints (NoNos), IV in her hand and her eyes looked scared. She was very confused and you could tell she was in pain. They had given her Stadol for her pain and it wasn’t long until she was resting in my arms.
I held the oxygen in front of her face as they slowly started weaning it back. The long thread coming from her mouth was from the stitch through her tongue. When cleft patients are coming out from under anesthesia, they have the string in place so that if they struggle with breathing, they can pull the string, thus pulling their tongue, to clear the airway. Because of the obvious work done in the mouth, intubation would be very traumatic to the stitches. Thankfully, Anna did very well, and the stitch was removed. They reclined the chair I was in and wheeled me, holding Anna to her room.
As we left the recovery area, she again became very upset. She cried and screamed the majority of the way to her room, where she began to thrash around again. I was so afraid she would hit her mouth on my chest, that I wasn’t really paying much attention to her hitting her hands on the chair arms. They were padded, but she was quite forceful. While I tried to control her head, she was just destroying her IV. This was one of those moments you wish you could fast forward.
If you have ever been in a hospital, you know that if you have to be moved or a new shift begins, new vitals are taken. The nursing assistant and RN came into the room to try to get vitals…thankfully, they decided to leave her alone and let her calm down. She was given more medication and fell asleep. After a few minutes…seemed like seconds, the IV nurse came in to try to get a new IV. I am pretty sure you all know what happened next…yes, another total meltdown. But, they got the IV in and she was once again resting. She was totally worn out. She had lots of drainage and I just couldn’t keep her clean…or myself for that matter. After several attempts to do my best, I decided to just roll with it. Anna didn’t care how messy we were and honestly, if I could keep Anna happy, I didn’t care either.
Anna would wake up every 30 minutes or so very upset. I would do all my bouncing, patting, humming, rocking, talking, whatever I could think of to try to console her. She would soon go back to sleep. Rodney tried several times to get her to go to him and she wouldn’t. It made me feel bad for him because I know he just wanted to snuggle with her and give her love, but she would have no part of it. Anna and I sat in a recliner and Rodney tried to stretch out on a little sofa in the corner of the room. He didn’t get much rest either because I was constantly waking him up to get me something. I couldn’t move with her on my chest so he was basically waiting on the both of us…good Daddy!
I got pretty emotional a few times thinking about how she had to have her lip surgery in China alone, without us to console her. Then I began to think about Elli and how that she has had a palate surgery in China. Although not as severe, a painful surgery nonetheless. Rodney told me I had to stop! It was very emotional for all of us. It was painful for Anna and painful for Rodney and me to watch her hurt and feeling so helpless.
A few moments of rest for Anna after a very long day
About 1:00 am, I felt a drop on my hand…Anna’s IV. I called the nurse and she came in to check. What I feared was true, the IV was infiltrated. Because her hand was in a splint to keep her from bending her wrist, I really didn’t notice until it dripped on my hand. Her little hand was soooo swollen. I know it had to hurt. It looked really bad. About 1:30, two more IV nurses came in to try to get an IV in her foot. She did much better since she was a little more alert and not as confused. She still threw a fit, don’t get me wrong, but was much easier to console. After the IV was in, her nurse brought us some juice for her to try. I didn’t think she would do it, but she did. She drank a lot considering. I got an occasional glimpse in her mouth and if it were me, I still don’t know that I would be drinking anything…it looked so painful. It just made my chest hurt and a bit nauseated to see. I felt so bad for her.
Around 2:15 am, Anna started acting like Anna. Although still looking very serious and sad, she was giving that “I’m coming back” vibe! She feed her baby doll for well over 30 minutes. When she started nodding off, I tried to take the bottle, but she would wake up and start fussing…of course she got her bottle back and fed her baby some more. Around 3:00 am, she let Rodney take her so I could take a restroom break! She was content, so I laid on the sofa for about 2 ½ hours, which was nice. She was still drinking and becoming more compliant with what we asked her to do. She let Rodney hold her while I showered. She knocked out a container of cranberry juice and apple juice. When the surgeon came in for his rounds, he told us that her drinking was the “go home” goal. After we finished her last round of antibiotics, we were free to go! Unfortunately, the IV in her foot was going bad too. So they sent us home with her antibiotics and pain medication.
Even when she felt bad, she still had to feed her baby!
Anna will make a good mommy one day
I was so worried about her ride home. I couldn’t imagine how I would feel “orally” if I had this type of surgery, but then also take into account the fact that she had about a 2 ½ inch incision on her side. This is where they had taken the bone and cartilage for the bone graft. I thought she would go nuts in her car seat for 2 – 2 ½ hours on the ride home. We got to the truck, put her in her seat, she helped us get herself buckled and as Rodney turned the key, the radio came on…she began to bob her head up and down to the beat…oh yeah, my Anna was back!
Anna's feeling better - so it's time to play with Daddy
She did beautifully on the way home. We got home, she drank some PediaSure and we took a nap. She and I passed out in our bed and Rodney crashed on the couch. Saturday night she slept in her bed really good. Sunday she was a little fussy, but definitely nothing to complain about. She again drank really well and tried some soft foods, but she just wasn’t ready.
On Sunday night, she had a hard time falling asleep. She finally went down about 11:30 pm, but was awake at 2:30 am. I gave her more pain medication, put her in bed with Rodney and I, but she tossed and turned the remainder of the night. Today has definitely been her worse day at home. She has been really “clingy” and fussy. However, she did eat a whole Jell-o pudding cup and ½ a container of stage 2 baby food. Quite a step of progress I think. The swelling has really gone down today and her face is looking more “normal”. Her lips are still quite swollen, but not as bad as before.
Anna has proven over and over to be one brave little girl. She began her life facing many obstacles, but it hasn’t stopped her from being a loving, playful and determined. We are so thankful for God’s mercy shown to Anna over the last few days. Although she was in pain and scared, I have no doubt that God was with her and comforted her. She has exceeded my expectations yet again, doing far better than I imagined. We appreciate every prayer that went up for our daughter; we know that God answered our prayers. We ask that you continue to pray for her recovery.
We will go back to Louisville on Monday for her post-op visit. We will find out then, what the next definite step will be. We continue to pray for wisdom for all those involved with her treatment planning as well as for us to make the right decisions.
We are very blessed to have such a strong, brave, beautiful little girl.
Very thankful,
Rodney, Marcy, Carter, Jacob, Parker & Anna Mei
