Emma is home

I am so glad that Emma has had her surgery..she has done so wonderfully..I am so proud of her.
We had a rough morning since she did wake up too early but finally did fall asleep before we left for the hospital.

Emma did great while we did have to wait for a while before they did take her back to get her started for her surgery..she went straight to the nurse while she was shaking her rattle. It was a long 2 and a half hours for me until her plastic surgeon finally did come out and told us that she did really well.

They finally called to say that one of us could go back and sit with her while in recovery..of course Ron said go and I did..The nurse was holding her trying to sooth her but she was not happy..She was still not very happy when I had her..so I thought she might act different with Ron..it did help at first but not for long..I know she was feeling really odd and not understanding what was going on. They even put us into a little room on the side so that three of us could be back there at the same time..which did help..We tried everything we could to console her..the nurse kept suggesting anything she could think of..we got some strawberry yogurt..which she did take a few bites of it. She didn't care for the bottle..since it was new..so Ron had to go get hers from the van and she started to try to drink from it...thank you Holly for telling me that I should take one...I probably would have not thought about that.

A room finally opened for her so we got to go up there..she slept quite a bit as we held her since her arm restraints were not on her...Mom and I kept taking turns with her. We decided we would try and feed her and she was ready..later that night she did start chugging her bottle down..which was great. We did put the arm restraints on so we could put her in the crib..which did not get used much..she didn't sleep very long when we did put her in it.

She does have arm restraints which surprisingly she does not let her stop her..she is adjusting with them..these will be on for 2 or 3 weeks..we are taking them off of her periodically so she can bend her elbows..this morning when she was really tired she really just wanted to hold and snuggle her care bear..she did figure out how to do it and finally relaxed and fell asleep.

The plastic surgeon came in really early and he was discharging us..Emma was acting pretty normal except she was really tired at times..she was still not eating a lot but enough. Once the IV and the pulse ox came off, she was a lot happier..as anyone would be. She was then able to go for a walk and go play.

I am amazed at my little girl..my mom said she was just like me when I had open heart surgery at 4 and half months old..I bounced back so fast that I was out of the hospital in 14 days. My mom helped me out so much. She complained about not getting any sleep..I told her she was not here to sleep..she was here to help keep Emma happy. She really did enjoy staying and helping out.

Today is Wednesday..we are 5 days until surgery. My nerves have gotten a little better. I have talked to a couple of people whose kids have gone through this surgery already. This has helped me a lot..now we just wait to see. Emma is a very strong baby and I know everything will be okay. My mom is going to stay with me the whole time at the hospital since Ron will have one child at home that night..we are lucky that we are so close to the hospital that if I need him he can be there quick. The surgeon thinks we will be there only for one night..I am happy with that.

Emma is now 19 lbs 6.2 oz and is 28 and a half inches. She is getting so big. It is sometimes hard to carry her around.. It is hard to believe that 10 months have gone by already. It has been too fast. I only have 2 more months until she is 1..I have really loved watching her grow into this little independent person who knows what she wants and figures out how to get. She is learning to step on things if it is out of reach..and it does not matter what it is. She is using everything and everyone to pull to stand. She is still mostly crawling with one knee one foot...I guess that is how she likes doing it and I can't get her to change. She is really wanting to get on those feet and start walking by herself. It is really cute to watch her do squats..she will pick something up and then will put it back down on the floor and will repeat it..over and over. When it is time to eat I used to have to get the food and then go get her..now I get the food and tell Emma it is time to eat and here she will come crawling to me as fast as she can.

I have been trying to teach her sign language..I have been doing a couple of words..I know she will not be able to do them for a month because of the arm restraints so I have not really pushed it. I will still do them to her.. she already will sign toy, and sometimes she will try drink..but now she is saying daddy..I was putting her to sleep the other day and she signed daddy a couple of times..I was happy to see that she is finally starting to respond..I don't have to teach her mommy since she knows that word and I hear it all the time..which I would not have it any other way..

Until later

Emma update

The countdown to surgery is 11 days and so much needs to be done..to me it needs to be done..


Today ended up being the last day of physical therapy..YAY! She still does need a little work but we agreed that I could do that at home. Like using the opposite leg..not just using the same one..if I do see after her surgery that she does need help again with either occupational or physical therapy I just need to call the doctor to get it ordered.

The kids have been here as usual..Devin who is 8 can care less about Emma..he is just starting to want to play with her when he wants to..I think too Emma is bigger and doing more. Emma will follow him around and he will yell for someone to get her. Her sisters play, hold her, anything else she wants, they will do it all the time..The other day he decides that he will play with her on the floor..she does what all babies do.. she pulls herself up using him..he says to us we need to get a picture..I got the camera..he really enjoyed it
even though his face may say something else..

Emma loves playing with her ducks..even out of the tub..She was sleeping when I bought her a new one..when we got home I showed it to her and told her I bought a duck and she looked at me and it sounded like she said "o kay"..it also seems like she is making the ducks sound..she was crawling to it yesterday and there was that sound again..I still don't know how she makes some of her noises.

Until later...

Emma update

Everyday is a different day and I am enjoying every minute of it. Emma amazes me. She is so much more loving..she loves to give kisses and hugs..I will tell her to say I love you mommy and she looks at me and will put her arms around me..We have play time in bed before she actually goes to sleep..she tries to put her leg up over my side...she can almost do it..and then hug me..then I have to pull her close to me and she wants me to give her kisses and she will give me her slobbery kisses..this is a nightly ritual..


Her hair getting long on top so now i can put clips in her hair. I have been waiting for this for a while..

She is getting around so good now..she is doing better putting her 2 knees on the floor..but there are times that her knee comes up and she is on her foot..Emma has been letting go while she is standing ..my little daredevil..it freaks me out because she has been falling down and getting bumps..I know it happens but it still does.

Emma had another day at therapy yesterday..of course her therapist wanted her to do something and she was not going to do it until she was ready..she was having her walk and crawl and having her push herself up from laying down to sit..Emma knows how to do it another way and that is the way she likes to sit up...I am working on it but she just gets mad each time I try it..She does so much here at home..I tell her therapist what she is doing and she is surprised..

Today was the first day at The Little Gym..she had fun. There are were 2 other kids in her class and they are both younger..Emma just looked around a lot and stared at everything. She did do some of the exercises..then we went to explore the gym..We will be in the Bugs class until her surgery and then when she goes back 4 weeks later she will be a Bird..we will then double up 4 weeks to make up her classes that she misses.

Until later!

Well Emma is now 9 months old...she is developing much quickly than I thought she would..We were not sure what she was going to be able to do and when..she is so much more active in just the past couple of days..it is so cute..we just have to make sure things are put up now.

We had therapy this morning and she had another evaluation done..she actually did pretty good but got cranky since she was up until after 11pm last night and then had to get out of bed early.
She is pulling herself from kneel to stand..we have to work on crawling on both knees and sitting up from her side..we will do that this week..I was talking to her therapist and she thinks that Emma will be done with PT before her surgery if she keeps progressing like she has....we will see
I am thinking she might need OT to help her work with fingers...she is not picking things up with her fingers like she is suppose to..I will give it a few more weeks and work with her more and she how she does. She really wants to walk but she is too young to be doing that..

Last night I was giving her a bath...she put her face down into the bubbles and pops back up and continues playing with her ducks ..I am so glad that she is not afraid to get her face wet so when I teach her to swim she won't freak out with going under water.



I figured out how she gets from laying down to a sitting position..she did it last night when I was trying to put her to sleep..she pops her butt in the air and pushes her knees under her and then uses her arms to push herself up..

Until another day..

Emma moving around!!

Well..I have been wondering how Emma was getting from one place to another..I knew she was not rolling because she would be sitting up and she is not able to push herself up yet..Today we finally found out what she does..she is on her hands, one knee and one foot..she got to the end of the hallway and was knocking on one of the bedrooms..I had to close all the doors since there is no telling what she would find on the floor in the kids bedrooms.

She is still wanting to walk all the time..she is still determined to pull herself up to the table..If there is something she wants she figures out how to do it. I see the same determination as her cousin did when she was Emma's age..she has cerebral palsy..she is now 14 and is an inspiration to all of us..she never let her disability stop her from anything and she still does not. ( I am not aloud to talk about her)..so I kept it short!

Every time Emma laughs really big you see her two top teeth and she looks like a vampire...It is really cute but I can't wait till her two front ones come in...Emma will be 9 months in a few days..she has gained around 2 lbs. since she went to the doctor at age 7 months. It seems as though she has grown about 2 or 3 inches. I am going to have to raise her jumper to the last height or she is going to be on her knees jumping.

Well I found out that we should not take out Emma's tube since we are not sure if she will take the bottle after surgery. I know that is what is best but I just want her to be able to lay on her belly without it bothering her..even though it seems like it does not. When she is laying on me I do feel it and I have to adjust her so it does not bother me. I told Ron..if she starts drinking from her bottle whenever they say she can and she does..I am asking to have it taken out before we leave the hospital..she will be there for a day or two...just depends how she does.

This morning I was getting ready and since Emma got up on her own and it was earlier than I wanted...Ron was taking care of her...He yelled for me..Emma was making some kind of movement and he didn't know what it was..he said it looked as though she was saying come here..but I have only showed her a couple of words like mom, dad, eat, drink, toy..so what we are thinking was that she was saying drink..I asked her if she wanted a drink she was excited.. she still looks at me like I am crazy when I am trying to teach her..I know it will take time.

Bobbieann, my stepdaughter,and I took her to her Ear, Nose, and Throat doctor today. She did really good even though she was really tired for waking up extra early. He had to stick the strobe up her nose to the larynx..most kids with PRS have thicker tongues that will cause a blockage to the larynx...Emma does not have any blockage of any kind....that was the upside of the visit.
Her hearing test did not go so well..she did not hear the sounds from her right side..well the only time that she heard it was when the audiology doctor talked pretty loud. She does have fluid in her ears which is normal for PRS babies..since the fluid can get in real easy but not get out. That can cause hearing loss. He said his part will only take like 5 minutes...We will go back 6 weeks after her surgery and have another hearing test.

Emma finally figured out to pull herself up in her crib so now Ron will have to lower the mattress. She looked at me and it sounded like she said ummm and laughed..She has been getting stronger..it probably doesn't hurt that she does push ups...the baby version.. a lot when she is laying on her belly..up and down..up and down..sometimes nose first...she should learn soon not to do that. We start going to The Little Gym in 2 weeks..I know this will help her build strength up.

She has been really fussy the past couple of days..she is teething and I know it...it is mostly at night..when she is tired..she is trying to crawl to me..she still has not got that yet..but she is working on it..

The Beginning...

Emma is now 8 and a half months..I don't know where the time has gone..she is so big now that when she is laying across me half her body is on the bed. Once she was able to get food in that belly she has not stopped.

For people that does not know..Emma was born with Pierre Robin Sequence(Syndrome)..this is a small chin and a cleft palate..this condition is not known until birth..you can not see it on the ultrasound.they said that up to the 14 week of gestation their chins are stuck in their collar bone, it pushes everything back and then it pops out and starts growing properly..the condition has a big range..some babies needing tracheotomy and jaw distractions just so they can be able to breathe. She was tranferred to the UT NICU because of breathing issues and since it is a bigger facility..she was there for 5 weeks..after they found out that she was able to breathe on her own after 3 days..(she decided to pull the tube out from her throat),so all they could do was take it out and see how she did..2 hours later she was breathing 21% of oxygen just like we do..her main problem was that she could not suck to get enough food..so finally they put a g-tube in her belly.When they told me that she would have speech therapy coming to the house, I couldn't figure out what can they do for an infant..she was great...she showed me how to work Emma's tongue to help the muscles get stronger..in no time she was able to suck like an ounce of formula...then she got strong quick with their help every week. She also had physical therapy every week. She has physical therapy still. She will need speech therapy when she starts trying to talk.

I decided when she was 4 months that I wanted to do more to help her build strength..I found The Little Gym...I actually forgot about it since I was not going to Knoxville a lot except to the doctors..it helped her see other kids since they were all older and was ahead..she sat by herself the first time there and then a few weeks went by she was able to sit longer..we are going back for the Fall semester and I can't wait to see what she does this time...


Emma is rolling around everywhere..I can't keep her still. She will be crawling everywhere soon and then there will be no telling where I will find her...
Therapy is helping so much. She is getting stronger everyday. She is able to hold herself up...I work with her a lot on her shoulder strength since that is where her weakness is.
She is making a c/k sound which I don't know where it is coming from since you need your palate to do it...she says it a lot when Keeyah the cat comes around..she still only says mom and Emma..I am trying to teach her a few words in sign language..she just looks at me..sometimes she does move her hands..

Emma will be having her palate repair surgery on September 21st..we had the meeting with the plastic surgeon today..he explained how he will do it..I didn't know really how they were going to do..it is at 7:30am so it is the first one that day so it will be started on time he said..the ENT first will put the tubes in her ears which apparently only takes a few minutes..we will be going to the Ear, Nose and Throat doctor next week to make sure they are putting them in, but I know they are going to have to...then he said that his part will take about an hour and a half to two hours.
He also said that she will be able to drink out of the bottle and eat soft foods...Of course I forgot to ask him about using the feeding tube..so I was trying to call them..hopefully he will say that we will not need it and I can call the surgeon to get it taken out..I am crossing my fingers...

The tube is pretty much in the way especially tummy time..it gets irritated quite a bit since she is on her belly more and moving around..she doesn't seem to let it bother her but sometimes it looks disgusting...Because of the palate of non existence, I try to feed Emma sitting in her bouncer, especially liquids. I was feeding her Italian ice while sitting on the couch and all of a sudden blue liquid is coming out of her nose. She does sit in her high chair when she is eating table food.

Her teething has been pretty rough the past 2 weeks..she cut 2 teeth so that makes 4..they are barely showing.. I can see them when she lets me but I can feel them when she tries to bite.
I could talk about her for hours..she is my princess..my girly girl...and she knows it!