Tuesday, March 24, 2009

Surgery Date

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!

Sunday, March 22, 2009

This is Matt and I attempting to feed Mya! What a mess!

Friday, March 20, 2009


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!

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!!

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!!!
Sitting up on her own now!!

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!
This is Mya during her emptying scan. We fed her and then she had to lay under the scanner for an entire hour!!! That was a long day!

This is Mya during her EEG. The technician had to attach 26 different leads to her head while we attempted to keep her asleep! The test itself only took about 35 minutes.

Mya's Story

I got this idea from a parent that has helped me with our struggles with Mya. I wanted to tell our story so maybe we could help another family the way that she has helped my family! We also thought this would be a good idea to update our family and friends of her progress!

Mya was born on July 28th, 2008! She was exactly 3 weeks early. After walking laps in my house for several hours I finally convinced myself and my husband that I was in labor! By the time we got to the hospital I was contracting every 1-2 minutes and my blood pressure was high! After checking me.....my nurse wondered if the baby was breech. After confirming it, I was going to have a c-section! Within one hour we had a baby girl....our little angel Mya!

I tried breast feeding....but soon realized how difficult is was! Not only could I not sit up for at least 8 hours, I was also put on Mag Sulfate for my blood pressure. For those of you that have never been put on Mag...it is horrible!!! I pretty much could not get out of bed for 2 days and felt very dizzy when I did.

I started pumping and also supplementing with formula. Mya was a lazy lazy eater from day one! She weighed 7 lbs. 7 oz. at birth and got down to 6 lbs. 12 oz. by the time we left the hospital. We had her weight checked a few days after leaving the hospital and she was still 6lbs. 12 oz. I was worried...but glad that she had stopped losing weight at that point.

So, I kept breastfeeding and pumping until Mya was about 2 weeks old. After trying to feed her for an hour at a time every three hours, I finally gave up! I continued to pump every 3 hours around the clock to give her breast milk. (Which I did until she was 6 months old).

We used the nipples from the hospital for about 2 weeks and honestly that was the best that Mya ever ate. I actually was watching a section on the video camera and I said she was a little piggy! I said she was eating 2-2 1/2 ounces every 3 hours. She was eating this amount at 2-3 weeks old! Little did I know what we had in store for us!

Then we decided we needed to get her to take a bottle and regular nipple. This was such a struggle!! I swear we tried every bottle that was available in Target and Wal-Mart! We finally ended up with the playtex drop-ins.

By the time Mya was 2-3 months old we were having major concerns about her eating. She was only taking 1 1/2 to 2 oz. every 3 hours. She was crying with bottles, pulling her head away, arching her back, moving arms and legs, etc. We switched to a pediatrician in Lafayette. We had an Upper GI done....and it showed nothing.

Dr. Woods was convinced she was having internal reflux so she was started on medication. I seemed to help for a few days...then back to the same old stuff. We started seeing a Feeding Team at Home Hospital for about a month. After a month things were not getting better. We got referred to a Pediatric GI doctor in Noblesville. He also thought that she was having internal reflux. He changed her medications and set us on our way! HUGE MISTAKE!

These problems continued and actually got worse and worse. We were feeding Mya around the clock every 3 hours and were only able to get her to take around 18 oz. per day. She went about 3-4 weeks without gaining weight. She was taking over an hour to eat a small amount of milk. The only time we could get her to eat without crying was when she was half awake! How horrible!

I was going to be going back to work, thank heaven for my mom! Without her and my husband I would be completely insane!!! When Mya was about 4 1/2 months old we had a Feeding Team Apt. That thought her condition was getting worse and that we should get a full GI work-up.

We called our pediatrician and she sent us down to the Riley ER. The date was December 10th, 2008. Matt and I waited in the ER for about 11 hours. I am not a very patient person, but was so desperate for help that we both waited without a peep. After finally talking with the doctor they also thought it was reflux and a milk allergy. (I forgot to mention her horrible rashes she would get on her neck, torso, and creases of arms and legs). The ER doctor tested her poo for traces of blood to confirm a milk allergy. The test came back negative!! Hmmm.....that really surprised the doctor.

I went to nursing school with one of the nurses that was working in the ER that night! Thank heaven!! I don't think without her help we would have gotten admitted! After the stool came back negative she was convinced that something else was going on with Mya!

We were finally going to get help!!! We did not get moved to a room until after mid-night, but we didn't care. Mya was on the verge of dehydration so they gave her fluids through night (after 4 IV attempts- how horrible).

We had a swallow test scheduled for the morning! After only about 3 hours of sleep and seeing about 15 different residents/doctors she was having her test. The test results came back that Mya was aspirating! (Instead of the milk going into her stomach it was going into her lungs!) I couldn't believe it, but as crazy as it seems we were so glad to finally know what was wrong with her!

As any parent would....we thought.....now what do we do??? Then even worse news....Mya would have to have an NG tube until she grew out of her condition. After placing the NG for the first time I fell apart. It was by far the worst moment. Mya cried for probably 30 minutes straight and then got so worked up that she threw up her entire feeding. Thank goodness for all the support from my husband and our families.

Matt and I both had to put the NG tube down 3 separate times before they would let us go home. But home we went in some what good spirits. We were able to attempt bottle feeding for 10-15 minutes and then do the rest of the feedings with the NG.

We were not even home for 12 hours and Mya started to throw up. I'm not talking a little bit! She threw up the entire night, looked pale, and almost lethargic. We called Riley and they wanted us to bring her back to the ER. So, after not even being home for 24 hours we were headed back to Indy! Yuck!

After confirming the placement of the tube with an X-Ray, they felt that maybe she had a flu bug. We had to do two feedings in the ER and she did not throw up. They sent us home after being in the ER for about 6-7 hours. Later that evening I got very sick! As it turns out we all did have the flu. I got it along with my mom, dad, and sister-in-law! It was horrible!!!

Mya then got a horrible chest cold! I think we stayed in the house for several weeks after to make sure she did not get sick!!!

After 6 weeks, we did another swallow test and Mya failed. She actually did worse than the first time. So, now we could not give her any bottles at all. She did pass the section with thick baby foods. So, we were able to start giving her baby food.
Outside with Daddy!!