Bathroom Follies- 3 weeks post op!

We are watching her like a hawk and since there is little fun to be had by mouth for Avery for another 3 weeks we have to find other alternatives. Here is one that lasted about 30minutes! Avery is eating an adult size bowl of mush and cries when it's gone. She is trying to chew on toys etc so we might need to use the NO NO's again at times. Sleeping is going well- finally! Look at that crazy hair. She has post office hair... for those of you that know what that is! Avery likes to get out since we have felt sort of house bound lately. Soon we will feel like we are getting back into routine!

Well it's been 10 days since surgery and things are going well. We had a rough week. Avery is tired of her liquid diet and is extremely hard to put to sleep. We call her the midnight Gremlin! As of today we think she is off pain meds for good now. She is happy during the day and loves her No No's. We call them "pretties" and she holds her arms out for us to put them on her. When I take them off the dives into her mouth, but doesn't really do anything. She looks at mom to see if mom will tell her NO! She is a stinker that way! Loves to do what she knows she cannot! Smart cookie! Avery went days without eating anything. initially she did great eating, but then she stopped, even her fluids were hard to get in. Many dry diapers so it started to scar us. She feels as though she is waiting away. She feels super tiny. I suppose we should weigh her. It feels like she has lots a few lbs. I am sure that is not the case! We'll need to weigh her this week. Grammy and Grandpa in Denver sent this to Avery for something fun to do after surgery!

Dad and Avery playing around!

We try to have some time in her chair to give mom a break from the worry that she'll hurt herself somehow. We put non toy items on her tray and let her dig in. Of course we need a vat of these on hand since they all go in the floor in 3.3 seconds. Today was the first day of giving her back her mushy food. We only tried canned carrots and she looked at me like.... really.. really mom I can eat these? She giggled the whole time she ate them. We got some not such great news about Avery's allergies. We did a blood draw when she was under the anesthetic and they found her to be allergic to Dairy, soy, wheat, eggs, and peanuts! What are we going to feed this child? For those of you who don't know the whole story. Avery was give the flu shot by her Doctors, I was against it, but they insisted she needed it. "Perfectly Safe" was the Doctor's last words. Needless to say Avery was not allergic to Wheat and dairy before the Flu shot. Because Avery has an allergy to eggs and the flu shot has eggs in it... it triggered these allergies. I will be listing our 5 week reaction to the shot in a future post. I really feel the need to get this info out to all the moms I know!

Today 3rd day home- doing much better as you can see

We had to resort to the NO NO's. We'll just let these pictures show you how that's going!

Pure Joy! Pure Vindication!

YESTERDAY 2nd day home

Still pretty dazed and confused. Avery is not sleeping all that well. She is not eating lots either, but I think doing okay for what she has been through. Avery is wanting to get into all kinds of trouble- a good sign I think! We had to finally put up a gate. We are not letting her do much by herself so needless to say mom is 24/7 by her side and is still in her PJ's from yesterday. I don't think were were keeping ahead of her pain as much as we could and the reason for that is Avery had not been letting us get a syringe by her mouth at all... so we have had to rely on just plain Tylenol. I did manage to try today and we got about half of it in. The Tylenol with codeine should work better.



Overall she is doing well and we try to take lots of naps. Yesterday she only drank about 10 oz which is not enough. today by noon she had already had 7 so we'll keep pushing the fluids. So far she's eaten, yogurt, pears and chocolate pudding and a push- up- she says emmmmmm after each bite of pudding and the push up! Tried some oatmeal too, but only took a few bites.

Avery still has an open mouth posture with her tongue out sometimes. She is drooling a lot and some nasal leakage- clear looking fluid which we think will happen until she is healed. She has discovered some new sounds. last night during our Friday night movie night she was yelling- yeah yeah yeah over and over- the kids could not hear their movie- way to go Avery! She sounds different to us, her cry has changed and she is louder too. She is starting to say some of her old words like Hi Dae dee for Hayden Hi dada, nigh nigh for night night and we think she is saying NO! to us. She is jabbering a ton of new sounds so I am sure she feels that things are working differently for her.

It's so nice to not have food come out her nose when she eats. We pray that this continues and we will have not problems with healing.

We're Home!

Avery letting daddy care for her. They are watching Laurie Burkner!

We're home and resting well. Last night was great for everyone. Avery ate well. 3oz at a time with the sippy cup. She slept with us and would wake every 4 hours. We'd give her a Tylenol suppository and offered her milk. She took us up on the milk twice. I could hear it hitting her empty belly. She chugs it so I think she is also getting some air. She seems irritated and a bit gassy after she eats. We have not given her any of the codeine syrup b/c we've decided although it is a good pain reliever she gets all antsy and "jimmy- legged" It makes her hyper and restless. So far so good with the regular Tylenol. We do not need to do the NO NO's unless we put her to sleep by herself. She really has not wanted to get into her mouth yet. We'll see how she is when it heals and begins to itch more. I hurt her feelings when I tell her no if she gets too close to her mouth.. She gives this sad sad cry. Overall she has done really really well and we can see how fast she will recover. She is already wanting to walk all over and get into her usual spots around the house. Wants to climb the stairs, crawl in the fireplace etc. She ate yogurt in the hospital and this morning and the kids are loving that she is home. She was so excited when we entered the house yesterday with the kids all running up to her. Avery is VERY happy to be home.

Thanks to everyone for all your prayers- We could truly feel the prayers! Thank you so much. A BIG special thanks to all my friends who have been there and done this already. I appreciate all the advice, support, supplies sent. It has made all the difference to hear from moms who know what we are going through. Thanks Jen, Lissa, Nadia, Erin and everyone from Cleft Advocate.

Just wants Mama!

2nd day in the hospital! Still not letting mom go. Avery would cling to me every time I moved her for fear I was going to put her down. We were glued to each other. The night in the hospital was pretty miserable. She slept for about 10 min at a time and then would jump up and startle. She'd go right back down, but we didn't get much sleep. When we were sleeping someone was there to wake her up for some reason or another. The staff was great, but a hospital is no place to recover if you don't need to be there. After spending one night we opted to go home before the second night arrived. Avery was doing very well, the swelling was going down and all vitals had been excellent. We were ready to recover at home! So with Doctor's orders in hand we left!

By the evening she was letting Dad take her a bit, but would scream if I left her site. She would also cry every time a nurse came into take vitals.

We just had to get this shot!

Assigned to a room after surgery

This was Avery about an hour after we got her calmed down. She came out of anesthetic really hard and was so swollen and stretched. She looked so different to us. When we got back to our room she was hysterical and kicking trying to get the iv out of her foot. It didn't seem they were really ready for us so everybody was scrambling around. I was waiting on water since this is what they wanted me to try giving her. Nothing was making Avery calm down. She would have bursts of craziness with intermittent sleepiness. We felt so helpless. This by far was the worst recovery time Avery has had to date. We found she liked this position. She was bloated with gas which didn't help either. Come to find out her iv was not in or tapped properly, but we didn't find this out until much later. There was a senior nurse on staff which was great and she was able to finagle the cath so we didn't have to do a re -stick. Avery began to eat about 2 hours after surgery.. Her surgeon first wanted us to use the pigeon or haberman- Her Bottle which freaked us out... then we could go to her sippy cup. He wanted her to first drink the way she was most comfortable. He also doesn't feel that the bottle ever causes his patients any problem so he allows the bottle. Well Avery took 4 oz straight and got her belly full. This seemed to help with how she was feeling. Later she took 2 oz of her sippy cup and then wouldn't eat for another 15 hours. She only wants he sippy cup now which I am so happy b/c I didn't want to be temped to use her bottle. By the evening she was cracking smiles, but still clinging to mom.

Dr. Lacey said all went well with the surgery and expects she will do fine. We see him again on Monday for a post op check. Now we just need to keep her calm and in the healing mode.

Before Surgery!

This is right before I walked her into surgery. Avery knew and when we got into the OR she cried her eyes out. She looked around and saw everybody all gowned up and she was scared. I held her until they gave her the the anesthetic. I am always so grateful I could be there for this part.

This is all Avery wanted to do and I was just fine with it! I was getting sick to my stomach by this time and feel faint. We take this long walk to get to surgery and every time down this long hallway, I feel like I am going to faint. This time there was a hint of excitement though just knowing that she needed this surgery and that it might be her last for years. Reading magazines with mom just before going up. Avery was pulling at her hospital PJ's and the toe monitor. She wanted nothing to do with all this hospital stuff. We had an easy time getting up and out of the house which was great. We were able to feed her until 4:30 am and then juice until 6:30 so it was a breeze. She chugged a bottle of juice at 6 and didn't really seem hungry before surgery. Which started early.. about 8:45am.

Looking at all the equipment before we headed up to surgery. She wanted nothing to do with the staff. Screamed when they wanted to get near here.. She knew this time! She clung to mommy the whole time.

siblings

Ava- These kids love you more that words can describe... they are praying everyday for a successful surgery and that you feel better soon. They are your cheerleaders, your teachers, your best friends... for life!

More Birthday Party Pictures, Kissing Nana, Chillin with cousin Addison, Eating cake, princess hat!

Surgery Was Successful!

Everything went fine with the Surgery. Dr. Lacey was pleased with the outcome. Avery had a tough time coming out of the anestitic, pretty much uncontrollable for about an hour. She's doing better tonight, very clingy to Mom. The Medicine they are giving her makes her edgy on and off. She has eaten about 6 oz total. We'll post some more tomorrow and let you know when we get to bring her home!