Weight Today

Mya's weight was great today...she is up to 17 lbs. 8 oz! Almost half a pound in a week!

Update

So far Mya has been doing better the last few days. I actually took her off baby food a few days ago and I think that has made a huge difference. She was eating 4-6 tablespoons of baby food a day and I don't think she could handle that much quite yet.

She is so sensitive to any increases that I think toward the end of the day it was all catching up with her. So in turn she was throwing up more toward evening. (This is only my take on the situation) But obviously I must be on the right track if the vomiting has stopped since removing baby foods from her diet.

We go to see Colleen tomorrow in Fishers so I will get her opinion as well. I think I am going to try and give her only 4-6 bites of baby food and gradually work my way up from there! We finally got her eating and now we are backing her off!!

Let's hope for a good weight on Thursday! We are also still doing the 2 night bottles with a drip so I think that has helped as well!

Roller Coaster Ride!

Well...the last week has been a roller coaster ride to say the least! Mya started throwing up a lot over the last week. We have been keeping a log of the times she eats and amounts including baby food. We started noticing a trend of her throwing up again in the late evening and during the night feedings.


I finally broke down and called her doctor at Riley on Tuesday. She talked with a dietitian and they suggested that we try and fortify the formula again. (She can get the same amount of calories but in a smaller volume) We have tried this in the past and it did not work...but it had been several months since we tried. So....we thought we would give it a shot. Not surprisingly it did not help.


I did not want to go the entire weekend so I called Riley back first thing Friday morning. They wanted to get a current weight so I took her to Dr. Woods office at 9:00 yesterday morning. I was to call them back with the weight and then Dr. Dusick would call me back with a new plan.


Well....the day got worse. Mya actually lost a few ounces since her g-tube surgery 3 weeks ago. She only weighted 17 lbs 1oz. and was 26 3/4 inches long. I guess all the throwing up is finally catching up with her.


I finally got a phone call from Dr. Dusick early afternoon. She was disappointed with her weight but felt confident that if we get the vomiting under control we will be able to get her weight back up. She gave us two options.....one option was to try doing with night feedings with a syringe and not the pump. That way if the amount was too excessive it could just back up in the syringe instead of her throwing it up. The second option was to run the night feedings over several hours instead of in one hour.


She explained that some things work better for certain children and we would just have to do trial and error until we find out what works best for her. Not what I want to hear!!! After discussing it with Matt we decided to do the night feedings in over 2 1/2 hours instead of 1 hour. (So, her pump ran for 5 hours straight to get the two feedings in.)


Although she threw up her 8:00 P.M. bottle she did hold down the two night feedings last night. We are going to try it again tonight and see what happens. We have also started her back on Prevacid. Although it will not stop her throwing up it will cut down the acid content in the throw up so it does not damage her esophagus.


So I guess we will see what happens. She goes for her 9 month check up next Thursday so we will see what her weight does in the next week! I told the doctor that I feel like I'm in a bad dream! I feel like I am doing everything I can...but nothing seems to work! Please say an extra prayer for her!

Therapy Appointments

The cousins on Easter! This was the best picture I could get of the three of them!

Not crawling yet...but getting there!!

We have increased Mya's tube feedings to 150 cc...which means she is up to 5 oz.!!!! She gets 5 oz. of formula every 3-3 1/2 hours and it still takes us an hour for each feeding. She still gets 7 tube feeding a day. She is tolerating the volume very well. Usually she only throws up once per day.

We have been struggling with her baby food eating again. Things went horribly at the feeding therapist in Fishers on Monday. Colleen made the comment that Mya was not acting like the same child she saw last week. She has ups and downs with eating and I think that is going to be the case for awhile. We tried giving her a soft noodle and she ended up gagging and throwing up every where. I guess we know she is not ready for any type of solids.

On the other hand the physical therapist was very happy with the improvements in Mya physically. She gave us a few new exercises so we can continue to strengthen her upper body. She is now turning her left leg into crawling position now we just need to work on the right leg! She can hold herself up in crawling position but just rocks back and forth. No crawling yet....but she will get there!

We are getting a feeding evaluation done at Riley on Friday. Finally.....we have been waiting for this appointment for over a month!! Hopefully between Colleen in Fishers and Riley's feeding therapist we can get this girl eating! She has so much potential we just have to get over this hump!!

Update

Things are going pretty good in the Holderly house. Matt and I are back to feeling normal after the flu and Mya has been doing well! We actually increased her formula by 5cc per bottle yesterday. She is almost up to 5 oz. per feeding!!!!

Her feeding is kind of a roller coaster still and I think will be for quite awhile. Matt was able to go with me to Fishers on Thursday. We love the therapist we see there! The drive stinks...but well worth it! She has helped us discover the craziest things with Mya! The kid loves pickles, beef jerky, and spices added to her food! (including onion powder)! Who would have thought?? She is not one that likes bland foods that's for sure!

We go back to the physical therapist next week so I am anxious to she what she has to say. She was out of the country for a few weeks so it has been awhile since she has seen Mya. I think she will be pleased with all the physical progress she has made.

Her incision has been draining some and has scabs. Everyone keeps telling me it looks fine, but I think it looks painful. She is not wanting to roll on it much at all. Maybe this will encourage the little booger to start crawling!

She gets her new button put in on May 7th....so that will give her plenty of time to heal up to enjoy Grandma and Grandpa's new pool this summer! I think with all the stress I lost my mind for a few days....I cut over 7 inches off my hair! I have not had my hair this short since 3rd grade! But I like it.....and won't end up pulling it up in a ponytail everyday!

God has blessed us with a beautiful baby! I know one day I will realize the significance for all of this! I just can't wait for that day! Happy Easter everyone!!

Home Sweet Home

Mya has been doing wonderful since we have been home! She has not thrown up for over 24 hours! She has also been eating 5-10 bites of baby food again! I think getting the NG tube out is going to help more than what we expected! She is a little trooper!

Mya has rolled over with her new belly tube, but is hesitant to do so. Once she gets rolled over she almost sucks in her belly...like ouchie...that hurts!!

On the flip side...Matt and I have been sick all day! We have only eaten a few crackers in the last 24 hours! We are wondering if Mya had a touch of the stomach flu while we were in the hospital and that is why she throwing up so much! If it's not one thing it's another!

Hopefully we will all feel better and get to enjoy the Easter weekend!

A few pics!

Going for a ride in the wagon!

Look no NG tube!!!

Right after surgery...still sound asleep!

We are coming home!!!

Finally we are going to be heading home!!! We should be leaving within an hour or two. Yesterday was a long day for all of us. Mya was just not tolerating the feeding very well at all. They backed the volume way down and we gradually built them up through the night. She is now receiving her 3rd bottle with the volume she normally receives.

The doctors explained to us that some babies just have a harder time bouncing back after the surgery. But they feel as though she is recovering well. Her incision looks great and she has rolled over on it a few times now!

Grandma and Grandpa came yesterday afternoon after we found out we would have to stay another night and brought more clothes for us! Thanks to the Ronald McDonald House Matt and I were able to take a shower and feel human again! My mom actually ended up staying the night so Matt and I could get some sleep!! (The lounge is not the best place to sleep....but it was better than nothing!)

Thanks again for all the prayers!! We appreciate it so much!!! She will be able to receive her button tube in a month...so I think life will get even easier then! Now we get to start focusing on getting her to eat some baby foods again!!!

Update

Well...needless to say we are still down at Riley. Mya has not been tolerating her feedings. They are wanting her to take a larger amount of formula than she has been used to and she is not holding it down. We just met with the doctor and we are hoping to meet some where in the middle with the volume of the feedings. (All the developmental doctors get together and discuss what we spoke about and then decide what they want to do for sure) So...we are playing the waiting game! They want to have at least 3 feedings in a row without her throwing up before they will let us go.

On the bright side...we are coming home with a feeding pump. Her feedings will have to go in over an hour so the pump will be nice. Her incision looks great and is healing well. She is getting back to her old self! We got some mats this morning to put on the floor so I think we are going to let her roll over for the first time since her surgery. We have been trying to prevent her rolling as long as possible! Matt and I have been pushing her around the unit in a stroller and doing anything to keep her occupied! Which is much easier said than done with all the wires and tubes she is hooked up to!

It has been a long last couple of days and we will be so glad when we are home!!

Forgot!

Forgot a couple things...

Mya was actually awake for almost an hour and a half earlier this evening. We even managed to get a few smiles out of her!! Her incision is actually smaller than what we had anticipated so that is always great!

We have a great night nurse! She actually went to nursing school with some people Matt knew from college! What a small world it is!

The hospital computers won't let me check Facebook, but I received tons of emails that we have messages! Thanks for all the prayers and concerns! We will keep updating as we can!! I'm sure tonight and tomorrow are going to keep us busy!

Surgery

It has been almost 12 hours since Mya started her surgery this morning! What a crazy 12 hours it has been! She did wonderful during her surgery and is recovering well.

The surgery itself only took a little over an hour, but we had to wait in the recovery room until about 3:30! But the wait was worth it! Matt, Mya, and I have a private room! I guess the unit is full....so at least for the night we have the room to ourselves!

She has now had two feedings through her new feeding tube. We are starting out to only give her 2 oz every 3 hours and will continue that for the rest of the night. So far she is tolerating them pretty well. She has not had any vomiting. She gets fussy with the feeds, but she is very sore from the surgery. I think with time it will improve! Tomorrow if she is doing well we will increase her feedings to her normal amount.

Her doctor said we would either come home late tomorrow or possibly on Saturday. (Depending how well she does) We are adapting pretty well to the new tube. It is very similar to her old NG tube. Matt and I would like to thank all our family and friends for all their support! I don't know where we would be without you all in our lives!! Mya is so special to us!!

Wait until you see her without her NG tube in...she is even more beautiful than before!! A special thanks to all the people who made the trip to Indy to see her!! We love you all!

Day Before Surgery

The last two days have been some of the longest days of my life! We finally got the phone call today at around 3:30 about Mya's surgery tomorrow. She will have the G-Tube placed at 9:00 tomorrow morning. Matt and I have to have her there at 7:30 to get her ready.

I'm sure tonight is going to be a little rough. We have to feed her pretty much around the clock until 6:00 in the morning. She can have formula until 3:00 A.M. and then pedialyte until 6:00 A.M. She will not be able to eat for several hours after the surgery so her hydration and nutrition tonight is important.

I feel like we have been waiting for this day for so long and now I just want to get it over with. I feel guilty looking at her knowing what I am going to put her through (although we are looking out for her best interest). I guess sometimes I just want to wake up and have this all be a bad dream!

I know how hard this has been on Matt and I but she is the one that is going through all the trauma. She had 4 days last week where see ate 5-10 bites of food at each meal. On Monday she gagged really bad and ended up throwing up while eating. Ever since I feel as though we are back to square one with her eating. We have started to go to a feeding therapitst in Fishers. So, I have hope that she will improve! I swear those 4 days of good eating were the best 4 days I have had in a long long time! I actually went on a shopping spree with my mom I was so excited! I just think....I wish all these problems were happening to me and not my little girl!

We would like to thank everyone for all their help! My mom has been a saint! She stayed at our house two nights in a row so we could get some sleep before her surgery! Please say an extra prayer for Mya tonight!! But I think God really is looking out for our little angel!!