Tuesday, December 30, 2008

Another Update

Grace is doing so well physically, she is tolerating tummy time and holding her head up so much more. She loves playing with her toys and has mastered her hand mouth coordination.



Gracie loves her sister and will always talk with her and smile at her. It is quite cute, every morning Morgan waits anxiously until Grace wakes up, the moment Gracie makes a peep Morgan runs into the bedroom and unwraps Gracie (we swaddle her in a swaddle me) and then gives her a big kiss and says, "good morning Gracie girl, you awake now and you happy."



Gracie's second tooth is beginning to pop through, which has brought a lot more drool and mouthing toys. We are still trying to find a formula she can tolerate, we've tried so many. Just recently we tried Alimentum---Grace developed a terrible diaper rash, so now I will clean her system out of that and try our last hope--Neocate. Oh how I hope this works, we have been blessed to receive breast milk from so many other moms, but we do need to find a formula she can tolerate. Especially because while she is in the hospital they won't give her breast milk that isn't mine or doesn't come from the milk bank.

January 9th Grace will have her third heart catherization. We are still waiting to schedule her sedated echo and once that is performed will know when her next surgery will be. I'm thinking Gracie is getting close, her sats are dropping more requiring more oxygen to keep her in the acceptable range. She will also go in on January 13th to have tubes put in her ears and have another AVR performed to see if the tubes will help with her moderate hearing loss--please pray that it will.

One of those nights

Usually Morgan goes to bed just fine, we pray, read, sing a song and then she goes to sleep. But occasionally she has her nights where she refuses to lay down, screams for an hour or an hour and a half, we let her get up for 10 minutes and then do our routine again and she goes to sleep.

Last night however, this didn't work. So after putting her to bed for the third time she asked if I would take her mattress off the bed and put it on the floor; she's never asked me to do this before. (You may ask where she would get this from, she has a friend whose father would take the mattress off the bed and let the kids jump on it.) So in desperation I did it and after a quick book and refusing to let her jump and play she was asleep within 10 minutes.

Kids are so funny!!!

Thursday, December 18, 2008

Santa's Visit



Last week we took Morgan to see Santa at the University mall and she was terrified, she barely even looked at Santa. Granted he wasn't my favorite looking Santa, I thought he was a little scary, so I was happy when Santa came to our home early!!

Morgan was still terrified until she realized that Santa was her favorite uncle Mike. Though hesitant, she sat on his lap and even loved being able to play with him and the gift he brought her.



We never thought we would get a picture of Grace with Santa this year because of how cautious we are with germs, but even that little desire was granted tonight. Thanks Mike and Emily!!!

Saturday, December 13, 2008

Random things

I just wanted to post some pictures and videos from the last few days. Oh how I love my girls!!!


Our new Christmas tradition--gingerbread houses.


Mom, I'm kissing my peesheart.



Aren't they just adorable?

This video is just a short cute one of Gracie---I'm trying to get her to talk, but no matter how hard she tried she couldn't get sound to come out.

video







Sunday, December 7, 2008

Happy Birthday Gracie


I love these pictures, some of them you can even see her little tooth.



Today Gracie is 5 months old!! It is so amazing to look at my precious girl and all she has been through and know that she is still here chugging along and fighting all of her obstacles. Grace is still nippling anywhere between 15-25 cc a day, though she drinks the most from her first bottle of the day. We have been trying different formulas and still haven't found one that she can tolerate, but we still our trying.

Gracie loves Morgan---she follows her with her eyes everywhere she goes and just stares and smiles at her. Though Morgan can be a bit overwhelming a lot of the time, Gracie doesn't mind some of the harassment. Today Morgan was playing pretend food and kept giving Grace some,
well Grace was a trooper until Morgan put her fingers in Grace's mouth and down her throat...oh well, it the fate of being the younger sister.

Grace is talking more frequently and seems to try so much harder to talk, she just doesn't know exactly how to make sound come out all the time. But it is coming and sooner than I know it she'll be saying her first word!

Next week we will begin having an occupational therapist come from Kids On the Move come out and work with Grace. I'm excited but know that he has his work cut out for him--every time I try to put Grace on her tummy she flips out and screams to the point that she turns her oh so wonderful shade of purple and has sweat dripping off her forehead. But it will be good for her and with time she will become stronger and hopefully tolerate being on her stomach.

Happy 5 month birthday Gracie!!!




Wednesday, December 3, 2008

Can't sleep

Have you ever had one of those nights where you just can't fall asleep? Your mind is going and thinking and you just can't turn it off? I've been laying in bed for the past two hours and can't seem to fall asleep, so instead of being left alone with my thoughts (that's never a good thing) I thought I would attempt to update the blog.

Things have been somewhat busy in the Gourley house--I decided to start potty training Morgan. The other day Jason changed a terrible diaper and said to me that we needed to potty train her because her diapers are just terrible. So we bought her some big girl undies and there they sat in her drawer. Finally today I had it and thought now is as good as ever to try so off came the diaper and on goes the undies. Morgan did great today, only one accident! But towards the end of the night she was tired of sitting on the potty so frequently and just cried and whined every time we took her to the potty so we put a pull up on and called it a night. Maybe she will be a breeze to train---I don't think so, she doesn't quite understand that she can hold her pee I think.

As for Grace, she is doing great. She is drinking about 25cc a day, it is a big improvement. I tried some new bottles and she really seems to like Dr. Brown's. She is sleeping a lot better and even has allowed us to set a bedtime with her.

Last night after her bath she cooed for the first time!! I was thrilled and today I even got it on video, I'll post that when I feel like editing and putting it on the computer. Gracie really is a sweetheart, sometimes it is hard for others to see that because she is fussy and irritated most of the time, but those moments where she is content and happy she is just a doll! I can't help but staring at her and think of how much of a miracle she is. To think how remarkable she is to be here living with only half a heart, to have gone through so much and still have so much more to go through. Gracie is truly stronger than anyone I have ever known. Oh how much I love my sweet little baby---in my eyes she will always be perfect, defective heart and all!!