We met with Mya's surgeon this morning at Riley. She will be having the G-tube placed next Thursday, April 2nd. If everything goes according to plan, we will only have to stay one night. Matt and I have mixed emotions about all of it. In some aspects we are so relieved just knowing we will probably only have to put the NG tube down 1 or 2 more times. But on the other hand nervous that she is going to have to be put under for the procedure.
The doctor gave us two choices of G-tubes. The style that we all decided on will require a little larger incision and stitches. But she will not have to have a camera scope placed down her throat to her stomach. She will have about 10 inches of tubing hanging from her belly for the first month. After healing is complete she will have a button placed. (It will be almost flush with her skin) So, things will be a little rough for the first month, but much better than having the NG. The surgeon suggested doing sponge baths for the first month to allow the area to heal and stay clean of infection. Our biggest job now is to keep her healthy before and after the surgery. If she gets sick before hand they will not do the procedure.
Well....I guess that pretty much sums up our appointment today! Oh and yes Mya will be able to go swimming this summer as long as everything goes according to plan! She is also gaining weight really well! Up to 16 lbs. 12 oz.!!! Please keep praying for her and that the next week will go quickly! Mya is truly a blessing and I don't know where I would be without her!
Tuesday, March 24, 2009
Sunday, March 22, 2009
Friday, March 20, 2009
Job
Well....I have officially put in my resignation at work. After Mya failed the swallow study last week Matt and I decided I needed to be at home full time. North White has been so great allowing me to take the past few months off but I did not want to take advantage of their generosity. At the last doctors appointment they mentioned 9-12 months before Mya would be completely healed. With a feeding tube she will not be able to go to daycare and I can not expect my mom to watch her every day! She helps out enough as it is! Mya has physical therapy, feeding therapy, and numerous doctors appointments! So home is where I need to be! Matt and I both had stay at home moms......but I never thought I would be staying home because my child had a feeding tube!
She is getting stronger! Mya rolls clear across the living room and is still sitting up! Over the past week we have had some good feeding and some not so good feedings! She loves the suckers! We will keep working with her and pray that she will start to improve! I will let you all know what we find out at the surgery consultation this next Tuesday!
She is getting stronger! Mya rolls clear across the living room and is still sitting up! Over the past week we have had some good feeding and some not so good feedings! She loves the suckers! We will keep working with her and pray that she will start to improve! I will let you all know what we find out at the surgery consultation this next Tuesday!
Friday, March 13, 2009
Today's Appointment
Today's appointment went differently than what I expected. Mya completely refused the bottle with the study. (Even though it had been 7 weeks since we had tried a bottle) Dr. Dusick pretty much told us that she will probably never drink out of a bottle again. Mya cannot seem to get the swallow, suck, and breathe pattern down. She did take a few larger swallows with a cup and did aspirate the formula. The only way she can be given thin liquids is through a 1 cc dropper.
She did pass the section of thickened liquids with a cup and dropper. She also passed the baby food section again. So, for right now we are skipping bottles and sippy cups and moving on to teaching her to drink from a regular cup. Which as you would expect is very hard for a 7 1/2 month old! She is more interested in eating the cup at this age!
The even bigger challenge ahead is Mya's severe aversion toward spoon feeding and swallowing in general. All the months of aspirating and NG tube changes has made her very defensive toward anything to do with her face and mouth. She is very guarded and clamps her mouth shut when food comes at her. She is even getting guarded when I go to wash her face!
Dr. Dusick also advised us to give her suckers or anything she can put in her mouth that has flavor but does not require her to swallow. Hopefully this will help her start to enjoy different tastes and get through the fear that she has.
Mya will still need to have the G-Tube placed. (We have the surgery consultation on March 24th) She will have to be drinking and eating well enough on her own for several months before tube feeding can be stopped.
On top of the therapy she is getting now, we will start taking her to Riley once a week to meet with their feeding team to help her overcome these aversions toward eating. One thing that Dr. Dusick did say was that she feels Mya will some day eat and drink like a "normal" child. But it is going to be a long road ahead of us.
I feel that getting the G-Tube will help immensely. Yesterday she pulled the NG out 2 times! She is getting more active and her face is getting more and more irritated the more tape we pile on it! Poor thing!!
So....I guess for now the plan is try feeding with baby food 3 times per day, attempt cup feedings with thickened juices/formula, give 4-5 dropper fulls of thin liquids 3 times a day, and continue therapy.
Mya has been such a great sport through all of this!!! I just hope her guard will come down and she will start to enjoy eating! Thanks for all your prayers!! Where would we be without all your support!!
She did pass the section of thickened liquids with a cup and dropper. She also passed the baby food section again. So, for right now we are skipping bottles and sippy cups and moving on to teaching her to drink from a regular cup. Which as you would expect is very hard for a 7 1/2 month old! She is more interested in eating the cup at this age!
The even bigger challenge ahead is Mya's severe aversion toward spoon feeding and swallowing in general. All the months of aspirating and NG tube changes has made her very defensive toward anything to do with her face and mouth. She is very guarded and clamps her mouth shut when food comes at her. She is even getting guarded when I go to wash her face!
Dr. Dusick also advised us to give her suckers or anything she can put in her mouth that has flavor but does not require her to swallow. Hopefully this will help her start to enjoy different tastes and get through the fear that she has.
Mya will still need to have the G-Tube placed. (We have the surgery consultation on March 24th) She will have to be drinking and eating well enough on her own for several months before tube feeding can be stopped.
On top of the therapy she is getting now, we will start taking her to Riley once a week to meet with their feeding team to help her overcome these aversions toward eating. One thing that Dr. Dusick did say was that she feels Mya will some day eat and drink like a "normal" child. But it is going to be a long road ahead of us.
I feel that getting the G-Tube will help immensely. Yesterday she pulled the NG out 2 times! She is getting more active and her face is getting more and more irritated the more tape we pile on it! Poor thing!!
So....I guess for now the plan is try feeding with baby food 3 times per day, attempt cup feedings with thickened juices/formula, give 4-5 dropper fulls of thin liquids 3 times a day, and continue therapy.
Mya has been such a great sport through all of this!!! I just hope her guard will come down and she will start to enjoy eating! Thanks for all your prayers!! Where would we be without all your support!!
Tuesday, March 10, 2009
Exciting Day!
Today is such an exciting day for us! Mya is officially sitting up on her own! We have been waiting for this day! She is getting physically stronger each and every day! We have seen so many improvements in her in the last few months since she has had her feeding tube. I might be jinxing myself, but she has not thrown up in almost 3 days!!!!!
Matt and I would like to thank everyone for all the love and support we have received over the last 7 1/2 months! Mya is truly an angel and we don't know where we would be without her in our lives!!!
Matt and I would like to thank everyone for all the love and support we have received over the last 7 1/2 months! Mya is truly an angel and we don't know where we would be without her in our lives!!!
Sunday, March 8, 2009
Follow-up Appointment
Mya had a follow-up appointment on February 9th, 2009 after she failed the swallow study. Dr. Anna Dusick was very nice, but brutally honest with us. She did a full exam of Mya and told us that she also has low muscle tone. At this time she was not sitting up on her own and was only rolling from belly to back. Dr. Dusick was concerned because her feeding issue was not getting better, she has a lot of vomitting, and she had low tone. Sometimes all of these things together can possibly mean that she has an underlying medical condition. So, we were going to start testing. Over the last few weeks, Mya has had an Upper GI, Stomach Emptying Scan, Blood Work, Urine Genetic Testing, and an EEG. We have received results on everything but the Urine Genetic Testing. All other results are NEGATIVE!!! We could not be happier!! Through all of these tests and struggles Mya has remained such a happy baby! We could not love her more!! Without the help from my husband and mom I don't know where I would be!
Dr. Dusick also told us that in her opinion she thought Mya would need a feeding tube for the next 9-12 months. She spoke with us about putting in a permanent tube in her stomach. That way we would not have to keep putting the NG tube down every 4-5 days or when the little booger pulls it out! We have a surgery consultation on March 24th and her next swallowing test is Friday March 13th.
We now have a feeding therapist and a physical therapist that we work with! Now at 7 months Mya is almost sitting up on her own and is rolling all over the place! She now eats about 2 tablespoons of baby food 1-2 times per day and takes 4 oz. of formula every 3 hours. (She has 7-8 feedings per day) She weighs 15 lbs. 2 oz! We are working really hard with her to get her more physical strong and she is improving! We would like to thank everyone for all their thoughts and prayers!! We will keep updating everyone!
Dr. Dusick also told us that in her opinion she thought Mya would need a feeding tube for the next 9-12 months. She spoke with us about putting in a permanent tube in her stomach. That way we would not have to keep putting the NG tube down every 4-5 days or when the little booger pulls it out! We have a surgery consultation on March 24th and her next swallowing test is Friday March 13th.
We now have a feeding therapist and a physical therapist that we work with! Now at 7 months Mya is almost sitting up on her own and is rolling all over the place! She now eats about 2 tablespoons of baby food 1-2 times per day and takes 4 oz. of formula every 3 hours. (She has 7-8 feedings per day) She weighs 15 lbs. 2 oz! We are working really hard with her to get her more physical strong and she is improving! We would like to thank everyone for all their thoughts and prayers!! We will keep updating everyone!
Subscribe to:
Posts (Atom)
