We Are Done!

Yes, we are done with pureed food and no no guards!  I am so happy.  She did great, but I was sure getting sick of pureeing food.  Now she can eat whatever she wants.  I think we will go out to eat to celebrate!

I was gone a couple nights this week so I did not put Chloe to bed; however last night I did and it went much better.  She only fussed a little and fell asleep fairly easily.  She only woke up once and again went back to bed fairly easily.  I would imagine that she is a lot more comfortable sleeping without her no no guards.  We hope this will continue to improve.

She continues to amaze us with the things she is learning.  Her most recent achievements are performing the head, shoulder, knees and toes song and opening and closing her eyes on command.  It is so fun to see the world through the experiences of a toddler.   

Bedtime

So I must confess that I have been dreading bedtime with Chloe.  Since the surgery, bedtime has not been much fun.  It also seems like it is getting worse, not better.  Before her surgery she went to bed fairly easily on most nights and slept through the night.  Now when we sit down in the chair to read bedtime stories, the crying and fussing begins.  It is hard to get through any books.  When we first got her, it was hard to get through books because she did not have the patience to sit and listen.  That had gotten a little better before the surgery.  But now I have trouble getting through books because she is screaming and crying and wiggling all about.  Then no matter what I do, whether I rock her or put her in the crib, sing or be quiet, rub her head or hold her hand, it is all out screaming and crying.  I can leave the room and she cries or I can stay in the room and she cries.  It is really hard for me to listen to a crying child.  Caleb was a horrible sleeper and I had a difficult time letting Caleb cry when he was a baby.  I was so thrilled that Chloe was such a good sleeper.  Not now.  Please don't let this be the trend.  I am too old this time around to have a poor sleeper.  Then when she does finally get to sleep, she wakes up multiple times a night and cries out.  Sometimes it is mild and a little pat gets her back to sleep and sometimes it is all out screaming and crying standing up in her crib.  There have been many nights that we have brought her into the bed with us, but you know what, she doesn't always sleep better like that either.   So although she gets her no no guards off this week, I'm not sure that is going to make bedtime any easier.  I'm not sure what we are going to do.  I guess try and have a lot of patience and pray that this phase will not last long.

I also have to confess that I am sick of pureeing food.  I think she has eaten more yogurt, jello and soup in the last 3 weeks than in her lifetime.  Tonight we just cut the green beans up really small and gave them to her that way.  It can be such a mess to puree everything and put it in the syringe.  In 3 days she can eat whatever she wants anyway, so I thought this would be ok.  I can hardly wait for Thursday!
   
On a happier note, she can say 2 words "Mama" and "uh oh."   The uh oh she uses appropriately, but she still does not use mama when she is talking to me.  Hopefully with a little time that will progress.  She is really such a stinker and super funny.  The other night she saw Caleb playing a Wii game where you flap your arms like a bird and the next thing we know Chloe is doing the same thing.  She loved playing the Wii.  Also, last night she was teasing Kevin when he was trying to put on her no no guards.  She would hold her arm out to him and then just as he was going to start putting them on she would pull her arm back and giggle.  This of course made us laugh and I think that added some fuel to the fire.  She is such a fun, happy little toddler and really a joy to be around. (I guess I need to remember that at bedtime)  She keeps us laughing and smiling and completes our family in an amazing way.   

Chloe's Back!

We have our daughter back!  Yes, she finally seems back to normal.  She is acting like her happy, content self.  For the last week and a half, she has sort of been on the edge of fussy the whole time.  Anything seemed to set her off, but now she is back to her playful, happy self.  It is so great to see her smile, giggle, tease and play.  We were missing that and are super excited that she is feeling so much better.  She is also eating better and is probably eating the same amount she did before the surgery.  Our only issue is her sleep.  She is still having a hard time sleeping through the night.  We hope this will continue to improve especially after we take off the no no guards. 

We went back to the doctor on Monday.  He said everything looked great.  She needs to continue the pureed food and no no guards for 1.5 weeks more and then she can eat and do whatever she wants.  We don't have to go back and see him for 2 months.  At that time, he will determine if she needs speech therapy.

She looks great.  I am going to post some pictures so you can see how amazing it looks.   From a distance it is hard to tell she has even had surgery.

In the car right after the stitches were removed

Close up

Chloe is making her "Where?" sign. 

Too cute

Happy and smiling again!

Amazing

Chloe looks amazing!  We went back to the surgeon on Wednesday and he took the stitches out from her nose to her lip.  She still has a dissolvable stitch in her lip that she will hopefully lose in the next couple of days.  The area has healed so well.   We go for another follow up on Monday.  The doctor did mention that some time in the near future they would be arranging speech therapy.  I am not exactly sure what they do for an 18 month old, but I am looking forward to her speech development.

She is overall doing much better.  She is eating a whole lot more and now eating enough to sustain herself.  We are still doing pretty well with the pureed foods but continue to be hit or miss with the syringe.  Caleb has fallen in love with my peach/strawberry puree.  Every day when he gets home from school he wants me to make it.  It is just a couple of peaches and strawberries pureed.  One day I threw a few scoops of ice cream in it and he said it was the best smoothie he had ever had!  I think Chloe really liked it too because she drank a bunch.   I am still a little challenged with what foods to make her.  I am not the most creative chef, so that creates a problem.  It is super easy to puree fruit and she has been eating a bunch of it.  We did venture out to eat.  We love Tex Mex and had to go get our fix.  I brought her some applesauce and baby food to eat.  She ate some of that and some refried beans and rice.   Over all it went really well.  I was a bit surprised. 

Chloe continues to be a bit more fussy than before the surgery.  She also seems to be a little more clingy to me since the surgery.  Her sleep is also a problem.  She was such a good sleeper before the surgery.  At times she fights falling asleep and then wakes up numerous times during the night.  Sometimes when she awakes, she is crying so hard that it is difficult to put her back to bed.  I think her sleep issues may be playing a part to her overall mood.  Thankfully, her pain has improved and we have not had to give her any of the pain medication in 3 days.

On Saturday when we got home from the hospital, we were sort of playing and Chloe said Mama!  Kevin looked at me and said “I guess the surgery was worth it!”  It melted my heart.  I have tried to get her to say it numerous times since then and have not been quite as lucky but still I know she has the potential to say it.   

I have gone back to work full-time.  My first few days back were not too bad.  She did well and so did I.  Hopefully now our routine will be settling in.  I still sit in amazement when I think about what has happened to her in the last 1 ½ months.  Her whole world has been turned upside down.  She has moved ½ way around the world with 3 strangers.  She has adapted to a completely new environment and way of doing things.  Then she survived a very painful surgery.    She has done remarkably well.  If this time is at all a reflection of how she will do in her lifetime, she will be very successful. 

Plan B

So we have been home 2 days now and Chloe is still not eating or drinking much.  We have been hiding our eating because I was afraid she would want what was on our plates.  But since she barely seems to eat at all, I couldn't imagine that now she would want what we were eating.  Tonight I decided to have us all eat as a family to see if that would spark some eating.  She did eat some at dinner and did not wine or complain about wanting stuff we were eating.  So I was feeling more positive. 

I have sort of been using a spoon.  Don't tell the doctor.  I know I hate it when my patients don't follow my directions, so I am sure the surgeon would not be too happy.  But I am dealing with an 18 month old independent toddler who does not like the idea of eating with a syringe.  I am using one of those really soft plastic toddler spoons which are small and I am not putting the spoon in her mouth, just sort of dropping the food into her mouth at the lips.  We are also trying to give her food in a cup, like yogurt.  She seems to eat more when we use those methods instead of the syringe.  I am not giving up on the syringe, but just have some other tools in my tool bag.

She has been a little more fussy since we have been home.  Some is due to pain I'm sure, but some is just probably not feeling generally well.  We are giving her pain medication and I'm sure that makes her feel a little off.  Also, she has not been sleeping well at night.  She wakes up numerous times and is restless.  So all of these factors contribute to her mood.  She does love to be outside however and I am thankful for the cooler weather.  We have been on many walks since we have been home.  She seems very content outside, so I am sure we will be spending a lot of time outside in the next few weeks. 

She continues to do great with the no no guards.  I am absolutely amazed at how adaptable she has been with those things.  She does not seem to mind wearing them and they do not seem to slow her down in the slightest.  I hope that trend continues.

Her face continues to look better and better.  The swelling is going down and the slight bruising is resolving.  I can't wait to see the final product!  We go back to the surgeon on Wednesday to have her sutures removed and I am anxious to see what he thinks.

We really appreciate all of the support and prayers.  I'm not sure we could have gotten through this ordeal without them.  Chloe is an amazing girl that I hope all of you will be able to meet someday.    

Before

After

My little Aggies

    

Hunger Strike!

Chloe’s surgery was Thursday.  The surgery was scheduled to start at 10am.  We needed to be at the hospital at 8:30 am and she was not to have anything to eat after 2:30 am.  I fretted about whether I should wake her up at 2 am to feed her or not.  Kevin thought that regardless if we got her up and fed her she would probably be hungry in the morning and give us the eat sign.  Plus, we didn’t know how fussy she would be about being woken up at 2 am and if she would be able to fall back to sleep.  We wanted to make sure she was well rested for the procedure.  So we decided to forgo the 2 am feeding.  She woke up at 7 am well rested.  Little did she know what was going to happen to her that day.  We got her dressed and then Kevin took her for a walk in the stroller (which she loves) while I got Caleb fed and ready for school.  We thought distraction was the best tactic.  After Kevin was done with the walk, we did not even let her back in the house.  We put her in the car and headed off to drop Caleb at school and then headed to the hospital.  We checked in and headed to pre-op.  While in pre-op we learned that Chloe would be spending the night in the pediatric ICU.  We were a little shocked because no one had told us that part.  It was only for precautionary measures so they can closely monitor her airway since the surgery would involve the mouth.  We felt better about that, but still a little taken back. 

While waiting in pre-op Chloe did great!  She fussed a little when they took her blood pressure but otherwise had a huge smile on her face.  They have a lot of toys in pre-op which was great for distracting her.  She had not even asked to eat which I was thankful for until around 8:40 am..  We quickly distracted her.  At 10 am they told us the doctor was running an hour late.  Great!  More time to kill.  But again, she rose to the occasion and did well until they called us back sometime around 11am.  They gave her a sedative in pre-op and then off they went to the OR and she did not even fuss leaving us.  It was a very comforting way to have her leave us. 

She had her ear tubes first which took very little time.  The ENT doctor came out and told us it went well.  She did have some fluid drain when he put in the tubes which was expected.  Then we waited.  They started with the cleft lip and palate repair around noon.  Kevin and I sort of reminisced because this was the third time we had waited in that same surgery waiting room at Cook’s.  Twice for procedures on Caleb and now Chloe.  I bet before it is all said and done, we will become very familiar with that place.  The surgeon came out around 3:30 pm.  He said the procedure had gone very well.   They would take her to recovery and monitor for a little bit and then we could see her up in the ICU in about 1 hour.  The doctor again explained to us that 95% of his patients went home the next day and 5% went on a hunger strike.  He did point out that Chloe was a little older and that she may have a little more of a personality for opposition than a younger child would.  He also reminded us that she was having both procedures at one time instead of separate procedures and that may create more pain.  Still in my mind I was thinking this was Chloe and she LOVES to eat so I was sure we would be going home the next day.  Little did I know.

Around that time Caleb arrived.  We went down to the cafeteria for a break and then up to the ICU waiting area.  They called us back around 5pm when she was all checked in.  When we got to her room, there were 4 or 5 nurses around her crib admiring her.  She was awake and peaceful and I think she was charming the pants off the nurses.  They all thought she was so adorable.  They said she had winning over the staff in the recovery room as well.  The first thing I noticed about Chloe was how beautiful and perfect her nose was.  I could not believe the difference.  Her nose was not bad before the surgery, but it was a little lopsided and the right nostril was larger and flatter than the left.  Now it is perfectly symmetric.  The cutest little nose you have ever seen.  We showed the nurses some before pictures and I think they too were amazed.  The doctor had given her a local anesthetic similar to novicaine into her mouth to help with the pain which is why she was so peaceful.  But as we all know, that eventually wears off.  Caleb did really well with her in the ICU.  Thankfully, she was still fairly comfortable while he was there.

Our night in the ICU was absolutely horrible.  She was in a lot of pain.  The morphine that they gave her every three hours helped, but it seemed like the medicine would only last about 2- 2 ½ hours and then she would be in a lot of pain again.  She had fitful sleep.  Even when she would sleep she would moan in her sleep.  It was also a little disturbing because blood was oozing out of her mouth.  It was a really pitiful sight.  They let us hold her and matter of fact she seemed to prefer sleeping with her chest toward my chest.  I couldn’t see how that would be comfortable for her with her face buried into my shoulder or chest but that is what she wanted.  The bad part was the chairs were extremely uncomfortable and did not recline.  I had a hard time finding a comfortable position and every time I would adjust which seemed like every minute, it would stir her.  We got very little sleep that night.  We felt helpless watching our daughter in pain.  At times, it seemed like nothing we did could comfort her.  On top of that we knew that if she did not drink anything we were not going home the next day.  But she just felt awful and we knew there was no way she was going to drink or even feel like trying.  I can’t explain how the time crawled there.  Kevin and I commented that the time waiting for the 3 ½ hour surgery seemed to go by fairly quickly, but every minute seemed like an hour in the ICU. 

As I walked around the hospital and ICU area, I would gain perspective for our situation.  There were a lot of really sick kids and hurting families in that hospital and ICU.  Some parents may not even go home with their child.  I would see the little bald headed kids who were going through chemo or the really sick on the ventilator children in ICU or crying parents and realize how lucky we were.  I was thankful that our situation was temporary and that even though that night was horrible, it was just one night and the ultimate outcome was going to be magnificent.  I also reflected on all the orphans in China who did get these surgeries.  Who sat with them at the hospital and held them tight when they were crying out in pain?  Who would wipe the drool out of their mouths because it hurt so bad to even swallow their own saliva?  Just typing this brings tears to my eyes when I think about it.  In a way, I am glad that Chloe did not have her surgery in China because we were there to see her through and comfort her at her lowest point.  I thank God for His most awesome plan for her life!

Well night passed and morning came.  She got a dose or morphine at about 10 am.  She rested the most peaceful she had all night.  Kevin and I felt hopeful.  Since it was obvious we were not going to go home that day since she would not take anything by mouth, they were going to move us to a regular room.  I honestly think she just plain felt so bad that eating was the last thing she wanted to do.  Once she woke up though, she seemed content.  She was awake without being fussy and she did not seem like she was in pain.  Again Kevin and I felt more hopeful.  The regular room was a wonderful blessing.  It was quiet and the big chair was comfortable and reclined!  Bonus!  Once the nurse got us checked in we discussed the eating thing.  We explained to the nurse that she really doesn’t drink much at home but that she is a big eater.  We felt if they gave her something more like food, perhaps she would eat it.  The nurse suggested a milkshake.  Chloe and ice cream had to be a sure thing.  Unfortunately she only took about 1 ounce.  The doctor said she would have to be taking an average of 1 ½ ounces every hour in order to go home.  But we were encouraged because she actually swallowed and did not cry.  We started to see other signs that she was feeling better.  She gave me her sign that she needed to go to the bathroom.  She was obviously feeling much better that she would actually want to get up and go to the bathroom.  We decided to take advantage of the fact that she was more alert and feeling better so we got a wagon that they use for wheelchairs for the little ones and walked around the hospital.  I think she really enjoyed it despite the fact that there was not a smile.  She continued to do well in the afternoon and then actually came alive that night.  Her eyes were alert and you could just tell she felt much better.  We did another walk around the hospital that night with the wagon.  We sort of walked in a circle around the entry area of the hospital.  The man working at the desk commented that we were going to get a workout since we had walked around so many times.  When we went back to the room I started to play little peek a boo games with her and she started to giggle and smile.  She became even more active and was walking around.  We decided to put on her shoes and let her explore the hospital herself.  We went to the play area and she had a great time playing with toys.  Then she found the elevator.  She had so much fun pushing the buttons and we rode the elevator up and down lots of times. 

All was going really well until we tried to put her to sleep.  As I said before she really wanted to sleep lying on my chest.  In the ICU, I was eventually able to lay her down in the crib.  I’m not sure if it was because she was feeling better and had some spunk, but she was having no part of lying in her crib.  She cried and cried when we put her in.  I would think the crying would hurt her mouth but that did not stop her.  So the nurse suggested that they bring in an adult bed and we could both sleep in the bed.  We had to sign a waiver for that to happen.  I’m sure hospital policy makes you sign that so you are aware she could fall out and get hurt.  No problem sign away.  She fell asleep quickly lying on my chest and she slept.  And I slept.  Kevin had a separate little couch/ cushion bed thing and he slept.  Of course it is a hospital not a hotel (as I’m always saying to patients) so we were interrupted a lot at night for vital signs and taking her antibiotic and of course she still woke up in pain and needed pain medication.  But it was a much better night and for that I am thankful.  In the morning we again talked to the nurse about having food instead of liquids.  She brought in some jello and Chloe ate that up lickety split.  We ordered her some cream of wheat and she ate most of that too, she didn’t even seem to mind the syringe.  We were ready to go home.  What a relief.  We had to kill a little time for them to complete the discharge paperwork.  We went back to the play room.  There is a large aquarium there with a big eel.  The eel was opening and closing it’s mouth.  I would say open, close as the eel opened and closed his mouth.  Then Chloe started opening and closing her mouth.  It was the first time she had really opened her mouth since the surgery.  She started to get upset and cry.  I’m not sure if it was because it was a little scary since everything in her mouth was so different or if it hurt.  But you could tell she knew something was different.  After the paperwork was completed, we were on our way.

She has done really well with the no no guards.  It was so cute in the hospital.  The guard would sort of slip down and even though she was feeling bad she would point at it to show me that I needed to adjust it.  When we would take them off for something, she would just hold her arm out to have them put back on.  No fighting.  She is so adaptable.  She did find that they strap with Velcro and I suspect if we are not careful she may be able to get those off.  So far so good with the guards.

Now we are home.  Home sweet home.  When we got home she was acting more like her normal self.  She is playing and exploring like nothing ever happened.  Eating still seems to be a slight issue.  I think some of it is that she wants to feed herself.  I think it also may be a little painful.  So she is eating significantly less than she usually does.  Kevin and I are hopeful that as the pain continues to improve so will the eating. 

We will keep you posted as things progress.  And as I am sure many of you are anxious to see.  We will try and post some pictures of my beauty.