At first I thought Dillon wanted a weekly Mommy and Me activity since for three weeks in a row, once a week we have had a trip to either the ER or the hospital. Then I got thinking - I am with Dillon 24/7 so in truth Dillon is getting bored with me and enjoys the friend that I bring with me whenever we have to go!
After the first week of the G tube falling out, next came getting sick. Dillon's temperature kept getting up to 101.9 so the doctor's office said to take him in. After an X-ray they decided it is just a cold give him Tylenol. Great - except even with the Tylenol two days later it got to 103.0 so in to the doctor we went. He put Dillon on an antibiotic to clear anything in his lungs up. Ok, so then after that Dillon did this thing three times in two days where the milk would pour out of his mouth. He should not be able to have anything up from his stomach. This leads us to yesterday, our trip to St. Christopher's. I watched as they did the upper GI on him and it was amazing. At 90ml, or three ounces, (Dillon should be getting 120ml at a time) I saw it go flying up his throat choking him. He then coughed it out for the next hour or so. I thought for sure this meant surgery, but PRAISE THE LORD no surgery! We just have to change Dillon eating a little. He will get much smaller meals during the day and be on a kangaroo pump at night. This will feed him 45ml every hour for 9 hours. I adjusted this schedule from what she had told me, but it doesn't matter as long as he gets all his food in during the day and can handle it. Today - Dillon did wonderful for the PT. He was on his tummy on the floor and lifting his head for her. Deb said she does see this in kids, if they have reflux they don’t like lifting their head because it puts too much pressure on their belly. Maybe this is why Dillon did better today - his tummy wasn't hurting him.
FRIDAY IS THE BIG DAY! I am looking forward to getting his hearing aids! I found an herb treatment that may help his ears though; I will include this later on if I decide for sure to do it.
12 comments:
HI Tiffany,
Glad to hear all is under control with Dillion's feeding now...that can be hard to regulate and figure out! We used the Kang. pump for months and now since he eats a bit by mouth, usually one big meal, or two....he gets bowles feeds during the day, which are quick and seem to stress him, but it is only 5 ounces at a time, we just have to let him "work through" his feeds, it takes an hour or so of high tone, then he is ready to go :)
You are a GREAT mommy for loving on him so much and wanting the BEST for him....keep it up!!! You are not alone, God is there...all the time, even in the middle of a high scary fever!!!
Thank you for your comment to me about my kiddos, they are true joys....and YES, it all does depend on my attitude in Ezzy's precious life in how they view him and his different developing ways....they do adore him and love him....we are very blessed by them...
God bless you and your family!
Liz Borbe
Dillon must be a social butterfly... he figures his best way to get around other people is to cause Mommy fits and get a third person to come along for the ride:o).
Dear Tiffany,
We have been praying for you and your family. I am a friend of Victoria's. (I also know your mom thru the FAR list.
I have a child with Down Syndrome and my 3 year old is a very bad diabetic. Somehow God truly does give you the grace to get thru things you never dreamed you could get thru. PLEASE make time to get some away time for you and your husband. It is easy to lose site of everything else when you are so consumed with all that must be done.
God Bless,
Laurie Cox
Hi Tiffany and Dillon,
Glad to hear that Dillon is doing well on the kangaroo pump. I wonder why they call it a kangaroo pump! We're eager to hear how Dillon responds to the hearing aids.
Pastor has been preaching from Hebrews 11 on faith for 3 weeks now. It is such a blessing. Tonight he preached about Noah trusting God and building this big boat for a hundred years and he hadn't even seen rain (Heb. 11:7) "By faith Noah, being warned of God of things not seen as yet, moved with fear, prepared an ark to the saving of his house; by the which he condemned the world, and became heir of the righteousness which is by faith." What a blessing to know that we can totally trust our God and that HE knows best. Give Daddy a hug for me. Love you all.
Thanks for the updates on Dillon. We are still praying for you and are
praising the Lord for every little bit of encouraging progress. Enjoy
your Mommy (Valerie) and Me (Tiffany) time!!
Love, Dennis and Amy
Tiffany,
I'm so happy there was no need for surgery. He answers prayers. "And it shall come to pass, that before they call, I will answer; and while thay are yet speaking, I will hear." Isaiah 65:24, the Lord has given me this verse to help thru the tough days and situations which seem to have no way out.
Love and praying your Sista in Christ,
Jen Hill(BHBC)
Hi Valerie. sorry it has been a while since i have contacted you but i have had my own situations to deal with.
As far as the baby she is my bother-in-laws granddaugter, she has come a long way since she was born, she was born with crystals on the brain, so much different than Dillion.
I can relate to Tiffiany's panic about the feeding tube because Curtis has one but he is much older and his comes out all the time , his tube is a J tube not a G tube, this has just been changed from G to J.
To Tiffany just keep up the good work and all the love you have for him.
It takes a special mom to take care of such a wonderful little boy
He may not be the "normal" little baby that everyone has but you have a very special little baby and he will reward you time and time again in his own special way.
My Curtis has the biggest smile that would melt anyones heart and he does, he is loved and liked every where he goes.
We were just to visit him today, he lives inOrillia in a group home and has his own bedroom and is the happiest guy going, they all love him there, i know he is safe and happy and that is what matters , he can not live with us as we do not have the facilities for him here in Lindsay, He requires 24 hr service which i can not give him as a mom.
If i can give you and advice don't give up on your dreams and hopes and love Dillion with all your heart.
Every child is different and every mom is different, so if you ever need to talk please email me.
Love Vicki
Well Tiff today is a big step for you. I know you looked at the kangeroo pump as a step backwards, but like I told you it was just a step sideways not back. Look at all he has done since he is on the new feeding!!!!! Back to the big step praying for you, knowing you are on cloud 1,356!!! Hearing aids yeah. We are proud of you and Si. Love you Daddy and Mom
So how big is Dillon now?
Just a thought...I think that in general, Americans expect babies to eat too much in one sitting. But think about this...the average adult at 160 lbs has a 32 oz stomach. So if all things are proportionate, wouldn't we expect a 16 lb baby to have a 3.2 oz stomach?
So why in the heck is it that we expect a 16 lb baby to down an 8 oz bottle of formula? I see moms do it all the time--but my belief is that they have taught their babies that stretching their stomachs out to that Thanksgiving day kind of "over full" feeling is "normal."
I know you are pumping--which is just SO admirable--I nursed all of my kids. But I talk about formula feeding here because it would seem that you are being given guidelines on how much to feed Dillon based on formula feeding norms. But the reality is...most breastfed babies don't consume the kind of quantities in one sitting that formula fed babies do. And in the end...they struggle less with weight issues as adults, so I'm going to stay with my belief that God knew what he was doing when He built hunger cues into babies and cues on when to stop eating...
Oh...wanted to let you know about a website that you might find helpful. http://www.cordclamp.com/NeonatResusHack.htm Just one of my pet peeves...why is it that we take a baby who isn't breathing--and immediately cut off his only source of oxygen? Why can't neonatal ressucitation be done with the umbillical cord intact?
Dear Tiffany,
I appreciate the updates on Dillon's progress. Please know that I am praying
for you, Dillan, and Josiah, and your mom and dad, too.
Love,
Mrs. Vanessa Brown
I'm glad that they figured out what was going on and that no surgery was in order. Please continues to update us. You can never know what an inspiration you are to me. You are always so positive and just continue to love and dote on Dillon.
I'm glad your little man doesn't have to have surgery. And I'm thrilled about his hearing aids. That's exciting, isn't it?
~Kristi
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