Sorry no picture, but I wanted to do a quick update. Gracie had a fairly busy week. I took her in for her second RSV shot, which she handled just fine. Then on Wednesday, she had her follow up visit with Dr. Su in cardiology. She has lost a little weight and weighs only 12 lbs. 14 oz. (she was 13 pounds a month ago) Dr. Su was a little concerned with this and we are working on increasing the doses of milk I am giving her everyday. Losing weight can be a sign that the heart is working too hard. In Gracie's case, he thinks her weight loss is because of her reflux. Her goal is to take in 26 ounces a day. I have increased it a little and she is tolerating it well so far. She still struggles a little bit on her feeds at night. Although I did figure out how to set her feeding pump to dispense her food for two hours and then give her an hour off and repeat that 2 more times in the night.
Dr. Su said that Gracie will most likely need the G-tube with the Nissen surgery. She will need the G-tube because she is no where near taking by mouth the calories she needs to sustain herself and needs the Nissen for her reflux. It is the consensus though, that we want to get Gracie through her second surgery before dealing with the G-tube issues.
So, as for her next SURGERY. I have a follow up visit the first part of January. If she has lost more weight and her saturation levels are declining, they will order her heart cath and schedule her surgery very soon after. If she has gained a little weight and is keeping her sats between 75-85 , then she will probably have surgery sometime at the end of January, into February. So we will have to wait and see.
Kids on the Move came yesterday and as usual, little Miss Gracie was a crabby patty. On our previous visit with KOM I was asking him about Gracie compared to his other clients and he mentioned that she was the fussiest child that he is currently working with. He didn't say it in a negative way, he just acknowledged that we have a challenge ahead of us with getting her to cooperate with the therapy to improve her motor/feeding skills. It was actually validating for me to hear that she really is kind of hard to get to do her 'exercises'. She pretty much fusses the whole time you try to get her to roll onto her side or stomach or anything besides lying on her back. However, she actually LIKES to be held now. YAY!! This past week, Gracie has taken about 10 spoonfuls of pears on a couple of occasions. Also, she likes apple juice squirted into her mouth from a syringe. So we will continue to take little baby steps with her.
Max, Taylor and Callie got their flu shots this week. They were NOT excited but were very brave and did very well. Tom, me and Gracie had already gotten our shots. So now we are all covered. So far, miraculously, Gracie has not had any major sickness since we've been home. That is 6 months!!!! Knock on wood!
A few things Gracie is doing now:
--blinking her eyes deeply on purpose, just to get us to do it back. Pretty funny.
--shakes her arms and kicks her legs really fast when she sees me.
--sits in her Bumbo chair for a fairly extended period of time, which she used to just hate doing.
--is struggling with a BAD diaper rash. She has had really bad ones on and off for about 4 months now.
That's about it for now. I hope everyone is getting ready for Christmas......only 18 days left. YIKES!!
6 comments:
Gracie has come so far. It would take someone with a bit of spit and vinegar to be able to go through what she has and to have survived. So I can imagine that although she is a doll, she has got to have some pep to be able to fight all that she has fought and will fight. HLHS kiddos are hard. Ryker had the spit and vinegar, and my niece has a bit too. But they are all so extraordinary! We will continue to pray for sweet Gracie.
Bummer about the weight loss, diaper rash, Gtube news, and surgery coming up :(.
YEAH for sitting in the bumbo, loving to be held, and staying HEALTHY!
Hopefully after her Glenn, she'll FEEL better and won't be so fussy with therapy and she'll be more interested in eating.
Prayers from AZ.
Andrea
Gracie sounds a lot like Bela...IMPOSSIBLE for therapists to work with. She wont let them even near her most of the time. We actually just asked to switch therapists to see if that would help, we'll see.. I always wonder if Bela is so high maintenance because that's just her personality or if it's related to her condition, but she is definatley high maintenance!!
About the G-tube...we are conisidering doing one also... Bela hasn't made too much progress with her liquids.. She's eating a little solids, about the same as Gracie. I just wanted to say that Bela's reflux has completley disapeared since her Glen. I think it was a combination of the surgery and age, but it has totally stopped. She threw up every day of her life 4-7 times a day and then all the sudden about three weeks ago it just stopped. I know it's something they just grow out of, and I'm sure that will happen for Gracie too... She also finally tolerates a larger amount at one time.. For 8 months she had to eat little amounts all the time, but now can take 5 ounces at once. I know it will come for Gracie too.. it took Bela about 3 months out of surgery, but it has made such a difference.. Feeding will get better. It has honestly been just as bad if not worse dealing with feeding issues than heart issues. It's the most frusterating part for me, I have weekly breakdowns because of it! I would give anything for her to just take a bottle or sippy and drink! I want the tube out so bad but don't want to do another procedure for the G-tube... Anyway, I always enjoy your updates because we're going through similar things and it's nice to know people understand...
Heart hugs,
Avery
Glad to hear Gracie continues to do well! Abby always did (and still does) the blinking thing. SO cute. We also had the awful diaper rashes too.
-Alison(Abby's mom)
Michele,
Gracie is a trooper and so are you. I know you will figure this out. Sorry about the set backs and the many, many unknowns. Even just thinking back to Gracie a few months ago, it's amazing how well she's doing and how much she's overcome. Keep truckin' forward!
You are constantly in our prayers.
Mindi and McKay
Hello! this is Kyler's mom.....he is HLHS as well. We were a few doors down from you guys in April after he had his Glenn. I came by to say HI a few times. Anyways, Kyler had the Nissen and G-tube placed when he was 2 months old and it is SO much easier than the NG tube. I was so torn about it, but even with the slight issues we have had, I would MUCH rather have it there. If you have any questions please let me know, I would love to help you! MERRY CHRISTMAS and I am so happy that Gracie is doing so well.
Nicole
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