Wednesday, December 30, 2009

Tube is Back in!!! YUCK

Okay, I have not wanted to post this, but here goes. Mackynlee lost 6 ounces with her tube taken out in a week. This is way too much for her to lose. Actually, any ounce is too much for her to lose. She needs to gain weight!! At least we know from giving her a break from the tube that she is not going to eat enough without it. We were just wanting to give it a try. For our peace of mind, we know she still has to have the tube. She needs to eat about 27 ounces a day. She was eating around 20 ounces a day on her on without the tube. Getting these 20 ounces down her each day was a struggle. We were nonstop feeding her. She was also very restless because she was never getting full. She snacked continuously.

We put the feeding tube back in yesterday. She is gagging and throwing up again. It is pure torture for all of us. It is so hard seeing your baby do this after every feeding!!! We may go ahead with the surgery to get the peg tube, or we may wait a while. There are many reasons to go ahead and get the tube, but I also have lots of hesitations about getting peg tube.

Reasons to get it:
She does not do well with the feeding tube in her throat.

Reasons not to go ahead with it:
I do not want her exposed to sickness in the hospital.
I do not want her to have any setbacks from having another surgery or just by being in the hospital.
I still have hopes that in a month or so her eating will pick up again.

I know there are many more reasons, but my brain is not working this morning. Pray I deal with this better. I know things could be a lot worse for us, but this is draining me. I am so tired of people offering suggestions of what I should do to get her to eat. We do not know why she is not eating. It has nothing to do with the taste of food or any other common reasons normal babies do not eat. People do not understand you cannot compare a heart baby in any way to a normal baby!!! Sorry for being so negative, I am just going through one of my feel sorry for myself and my baby days. I actually dodged people yesterday in Walmart because I did not want to be questioned or hear any suggestions!!!!!

I am going to share a post from another heart mom about the feeding tube issues. This is so similar to our feelings!!!

We did a trial for Veiyah's feeding tube to come out. She needs a total of 700 ml's a day for her calorie intake goals to be met. Just to be hydrated she needed at least 500. She got to about 550 a day. She did SO good. At first she went up 1.5 oz. Then 4 days later, she lost 4oz. So they said by the next visit (2 days) she HAD to be up the 4oz in weight gain for the tube to stay out. That visit came and she only gained 1 oz back. It was hard to have to put this tube back in, but I'm remembering how trivial this is compared to not having her with us. It is a pain, I won't lie. She is constantly pulling it out. We keep her arms wrapped, and an 8 month old baby girl shouldn't live like that. ;) So, we are looking at getting Veiyah scheduled to get a G-tube. I've wavered over this decision for months and Jer and I really do feel a peace about it now. Now it's just a waiting game. We wait on GI surgeons to get back with us on when! As for now, our consultation is this Friday. She also has her neurology appointment Friday as well. Please pray for both appts to go well.

It was SO much fun having that tube out of V's nose for a week and a half! She was a different baby!! She held her head up SO much better, no wobbling. She laughed more, smiled more, and we could hear her real voice rather than a muffled one from a tube swelling her throat. Wow, that girl has a voice! :)

Thursday, December 24, 2009

Merry Christmas

Mackynlee did great the first 24 hours having her tube out. She ate 21 ounces of formula, a half jar of baby food, two teaspoons of dumplin juice, peanut butter fudge, and 5 or 6 french fries. Today she is not eating so well. She is very fussy and very hungry, but just will not take much. Keep praying. I am not giving up just yet. She has only take about 10 ounces since 9 p.m. She has not wanted to eat any food this morning. She just holds it in her hand and throws it down. She is holding her own bottle!! Seems like she eats better when I let her hold it.

My friend Kolbi and baby Kade are home. His ultrasound was fine. Doctors want to do a follow up ultrasound in two months just to make sure all is okay. Thanks for special prayers for this family.

Hammer and Tonya: Thanks so much for the package of goodies. When I opened the box, I knew who it was from before opening the card. That is so sweet of yall. We will save the crab boil for when yall come for another visit. I hope it will be soon. The banana nut bread and peanut butter fudge is fine. Mackynlee loves the fudge!!! Merry Christmas.

I want to wish a very good friend of mine (my boss) Sherrie Williams a happy birthday. The holidays are not always a wonderful time of year for everyone. She lost her son in 2003 on Christmas Eve which is also her birthday. Two years later her husband passed away during the holidays. This is a difficult time of year for her. She has also lost several more family members in the past few years. I love you and wish I could make everything better. This poem is for you.


I cannot say that I know, just how you feel
For your hurt is so great, and will take God's touch to heal

Yet is it possible for such a wound, to completely ever mend
When you've lost your mate, parent, child or good friend

Please know that I pray for you, each and every day
And feel God's Holy Spirit, in small and simple ways

And then I am reminded, of such a simple phrase
With all the strength that's in you, please walk by faith

So come to me and talk about, anything you feel
For I'll be here in body, but Christ will soon reveal

That while it is impossible, for a friend to end your pain
HE will bring about a peace, and in your hurt sustain


When all five of us were eating breakfast this morning, my thoughts were with everyone that is in the hospital during this time of year. The hospital is a difficult place to be. I cannot imagine being there during the holidays. When I checked my messages this morning, a friend of ours, Kristen Colman had left a message that she was praying for us. Thank you Kristen for your prayers for us. Tell Breanna that Shelby says Merry Christmas and she wants to go back the the PRMH to play with her again. Her angel (Angelina) is still in the hospital. Their caring bridge is AngelinaColman. I encourage you to read their amazing story. They are still in the hospital. Kristen, both girls are just a beautiful as ever!!! Our thoughts and prayers are with your family. You are so strong. I do not know how you keep such a smile on your face. I ask that all of my readers pray specifically for the children and their caregivers that are in the hospital during the holidays and thank God as you are praying for the things in life you take for granted. Healthy children, homeade candy, walking to your kitchen for a cup of coffee, etc.


Christmas Eve: I hope all of you get a visit from Santa tonight!!

It was Christmas Eve and the frost fairies were busy getting ready for Christmas Day. First of all they spread the loveliest white snow carpet over the rough, bare ground; then they hung the bushes and trees with icicles that flashed like diamonds in the moonlight. Later on, they planned to draw beautiful frost pictures on the window panes, to surprise the little children in the morning.

The stars shone brightly and the moon sent floods of light in every nook and corner. How could any one think of sleeping when there was such a glory outside!

Jessie and Fred had gone to bed very early so they might be the first to shout "Merry Christmas!" but their eyes would not stay shut.

"Oh dear! It must be 'most morning," said Fred; "let us creep softly down stairs and maybe we'll catch Santa Claus before he rides off."

Hand in hand they tiptoed to the dining-room and peeped out the big window - surely, surely, that was something climbing up the roof of cousin Nellie's house; it must be old Santa. Fred gave a chuckle of delight; to be sure the reindeer were very queer looking objects, and the sleigh such a funny shape, but the children were satisfied.

The old fir tree, whose high branches almost touched the roof, knew all about those shadows, but it was so old no one could ever understand a word of the many tales it told.

"There's something scratching on the door," whispered Jessie; but it was only a mouse, who had sniffed the delightful odors of the Christmas goodies and was trying his best to find a way into the pantry and test them with his sharp teeth.

"Come," said Jessie, "we'll turn to icicles if we stay here much, longer"; so up-stairs they quickly scampered.

Papa had been to town on an errand, so it was quite late when he came home. As he was hunting in his pockets for his key, he heard a pitiful cry, and looking down he saw a big, white cat carrying a tiny kitten in her mouth.

"Poor thing," said papa, "you shall come inside till morning."

Santa Claus had been there with the nicest wagon for Fred and a warm, seal-skin cap that lay right in the middle of it. When papa left the room, puss and her kitty were curled up comfortably on the rug singing their sleepy song.

The sun was shining brightly in the dining-room window when Jessie and Fred made their appearance; then Fred just laughed with delight, for right in the crown of his new cap lay the cutest white kitten, with big, blue eyes and wee pink nose, while standing close by as if to guard her darling from danger, was good old mother puss.

"I never had a live Christmas present before," said Fred, "now I know Santa Claus read the letter I threw up the chimney because I told him to bring me a kitten and here it is."

Papa smiled and looked at mamma, and then everybody said "Merry Christmas" at once.

Monday, December 7, 2009

Waiting on G-Tube Appointmnet

I do not have any medical updates, but I just wanted to know all is going fine. I will update when we know a date for the G-Tube placement. Please pray that Mackynlee will miraculously begin eating 27+ ounces through her bottle each day. Yesterday she ate 8 ounces by mouth. I know 19 ounces more is a long way to go, but through prayer all things are possible.

I had a great birthday. Thanks to Tracy for buying me a planter that says "It is not waiting for the storm to pass. It is learning how to dance in the rain." I needed reminding of that saying. Shelby had me a surprise bday party right after school. It was the five of us, Meemaw, Granny, and Nina. It was the best bday I have had in a long time. I think it was the seeing the excitement in Shelby and Connor's eyes. I know I am truely loved.

I also posted a few pictures from Connor's bday party in the gallory. I think there's also a deer hunting picture.

It snowed here this past weekend. I added some pictures of Mackynlee in a Christmas dress that was Shelby's. She loved the snow.

We have gotten Mackynlee out of the house quite a few times lately. I hope we are not getting too brave, but I just wanted her to be apart of getting our Christmas tree, my birthday dinner, and I took her to two birthday parties. Oh, yeah, we took her to church too.

The first birthday party was for Olivia Torian. She was born two years ago with trisomy ?13?. It is a trisomy that is incompatible with life. She is a local miracle as she has proved medical theory wrong. Her mother and I have been friends since grade school. It was so sweet having two local miracles together.

The second bday party was for Connor's girlfriend haha. Our families are all close. Tracy and I are friends. Chad and Mark are friends. Our big girls are friends, and Madelyn and Connor are friends. I just did not want to leave Mackynlee out.

I enjoyed so much taking her to church. No one touched her and the people that came by to look were very respectful. It felt so good having her in the same place with so many of the people that prays for her daily.

I am going to leave you with a story. I encourage all to read it. This was inspired by Shelby. Last night after church, her teacher had taught her the colors of Christmas. Thank you Tammy Herrington for taking the time to teach my baby about Jesus.

Teach the children...
Late one Christmas Eve, I sank back, tired but content, into my easy chair. The kids were in bed, the gifts were wrapped, the milk and cookies waited by the fireplace for Santa. As I sat back admiring the tree with its decorations, I couldn't help feeling that something important was missing. It wasn't long before the tiny twinkling tree lights lulled me to sleep.

I don't know how long I slept, but all of a sudden I knew that I wasn't alone. I opened my eyes, and you can imagine my surprise when I saw Santa Claus himself standing next to my Christmas tree. He was dressed all in fur from his head to his foot just as the poem described him, but he was not the "jolly old elf" of Christmas legend. The man who stood before me looked sad and disappointed, and there were tears in his eyes.

"Santa, what's wrong?" I asked, "Why are you crying?"

"It's the children," Santa replied sadly.

"But Santa, the children love you," I said.

"Oh, I know they love me, and they love the gifts I bring them," Santa said, "but the children of today seem to have somehow missed out on the true spirit of Christmas. It's not their fault. It's just that the adults, many of them not having been taught themselves, have forgotten to teach the children."

"Teach them what?" I asked.

Santa's kind old face became soft, more gentle. His eyes began to shine with something more than tears. He spoke softly. "Teach the children the true meaning of Christmas. Teach them that the part of Christmas we can see, hear, and touch is much more than meets the eye. Teach them the symbolism behind the customs and traditions of Christmas which we now observe. Teach them what it is they truly represent."

Santa reached into his bag and pulled out a tiny Christmas tree and set it on my mantle. "Teach them about the Christmas tree. Green is the second color of Christmas. The stately evergreen, with its unchanging color, represents the hope of eternal life in Jesus. Its needles point heavenward as a reminder that mankind's thoughts should turn heavenward as well."

Santa reached into his bag again and pulled out a shiny star and placed it at the top of the small tree. "The star was the heavenly sign of promise. God promised a Savior for the world and the star was the sign of the fulfillment of that promise on the night that Jesus Christ was born. Teach the children that God always fulfills His promises, and that wise men still seek Him."

"Red," said Santa, "is the first color of Christmas." "He pulled forth a red ornament for the tiny tree. Red is deep, intense, vivid. It is the color of the life-giving blood that flows through our veins. It is the symbol of God's greatest gift. Teach the children that Christ gave his life and shed his blood for them that they might have eternal life. When they see the color red, it should remind them of that most wonderful gift."

Santa found a silver bell in his pack and placed it on the tree. "Just as lost sheep are guided to safety by the sound of the bell, it continues to ring today for all to be guided to the fold. Teach the children to follow the true Shepherd, who gave His life for the sheep."

Santa placed a candle on the mantle and lit it. The soft glow from its one tiny flame brightened the room. "The glow of the candle represents how people can show their thanks for the gift of God's son that Christmas Eve long ago. Teach the children to follow in Christ's foot go about doing good. Teach them to let their light so shine before people that all may see it and glorify God. This is what is symbolized when the twinkle lights shine on the tree like hundreds of bright, shining candles, each of them representing one of God's precious children, their light shining for all to see."

Again Santa reached into his bag and this time he brought forth a tiny red and white striped cane. As he hung it on the tree he spoke softly. "The candy cane is a stick of hard white candy. White to symbolize the virgin birth and sinless nature of Jesus, and hard to symbolize the Solid Rock the foundation of the church, and the firmness of God's promises. The candy cane is in the form of a "J" to represent the precious name of Jesus, who came to earth. It also represents the Good Shepherd's crook, which He uses to reach down into the ditches of the world to lift out the fallen lambs who, like all sheep, have gone astray. The original candy cane had three small red stripes, which are the stripes of the scourging Jesus received by which we are healed, and a large red stripe that represents the shed blood of Jesus, so that we can have the promise of eternal life.

"Teach these things to the children."

Santa brought out a beautiful wreath made of fresh, fragrant greenery tied with a bright red bow. "The bow reminds us of the bond of perfection, which is love. The wreath embodies all the good things about Christmas for those with eyes to see and hearts to understand. It contains the colors of red and green and the heaven-turned needles of the evergreen. The bow tells the story of good will towards all and its color reminds us of Christ's sacrifice. Even its very shape is symbolic, representing eternity and the eternal nature of Christ's love. It is a circle, without beginning and without end. These are the things you must teach the children."

I asked, "But where does that leave you, Santa?"

The tears gone now from his eyes, a smile broke over Santa's face. "Why bless you, my dear," he laughed, "I'm only a symbol myself. I represent the spirit of family fun and the joy of giving and receiving. If the children are taught these other things, there is no danger that I'll ever be forgotten."

"I think I'm beginning to understand."

"That's why I came," said Santa. "You're an adult. If you don't teach the children these things, then who will?"

(Author Unknown)

Tuesday, December 1, 2009

Doc Appointment Cancelled

Mackynlee had an appointment today to have a 24 hour PH probe test with the GI specialist. Yesterday evening, the nurse called and has postponed the appointment until further notice. I have mixed feelings about this. In one way I was happy to not have to do this today, in another way I just wanted to get this over with. She will have her feeding tube in one nostril and another tube in her other nostril for 24 hours. I know this is going to be annoying for her. The feeding tube has not been stressful lately. She has been keeping it in, and has been keeping down most of her feedings. She will eat from the bottle an ounce or two at a time. We feed her at least 770ml's a day, so we subtract what she takes by mouth and give her the rest through her tube. The home health nurse did not come yesterday, but we all feel sure she is gaining weight.

She is active as ever!! I think she is going to walk before she crawls. She is moving around everywhere, but it is more rolling than crawling. Her personality is blossoming. The other night I was handing her over to Mark(she usually goes right to him) she grabbed onto me tightly, turned her head away from him, and said,"hhhhmmmmpppph!" Too funny. Needless to say, I did not give her to him.

We had a wonderful Thanksgiving, and Connor's pirate party turned out to be the best party ever. Mark got off of the hook, he did not have to wear the pirate costume, Tany Powell offered to wear it. I will post some pics from the party later today when I get home. The birthday cakes were spectacular. My mother-in-law bakes wedding cakes, birthday cakes, etc. She always does a wonderful job on ours. She made a pirate with a bird on his shoulder and a treasure chest. We enjoyed visiting our friends and watching our children play together.

As we enjoy the holiday season, remember the words of this poem.

The Real Reason

Excitement and joy are filling the air;
The lights add special decor.
We're shopping for Christmas gifts everywhere,
But are gifts what Christmas is for?

The wreaths and the trees and the parties
Aren't what we need to convey;
It's the birth of our Savior, Jesus,
The real reason for this holiday.

By Karl and Joanna Fuchs

I will continue to update all of you on our appointment and let you know when the date is scheduled to get her g-tube