Talia's Story

What a cute princess!! This is the second story for your to read. I have only copied recent things, including her surgery. Please visit her blog to read how this beautiful little girl has grown!

Miss Talia is a cute & sassy CHD warriorette that came in to the world on May 5th, 2009 pink and screaming! She was diagnosed with pulmonary atresia, hypoplastic tricuspid valve and hypoplastic right ventricle while she was in-utero at 20 weeks. At 29 weeks in-utero, we went to Boston to Brigham & Womens Hospital and Boston Children's Hospital and had fetal intervention done to correct the pulmonary valve. She was the 11th baby to have this experimental surgery performed on. They took a needle and went in thru my stomach and in to Talia's tiny chest and opened up her pulmonary valve. The surgery was a success- however- a month later we found out that the bloodflow going thru her pulmonary valve had narrowed- and her diagnosis became pulmonary stenosis. Miss Talia is a brave and strong little girl. She's had 3 heart catheters, a BT shunt operation at 2 weeks old and the Bi-directional Glenn at 4 months. Watch for updates on Talia's life journey!

Updateposted on 01/21/2010
Miss Talia had her appt. with the heart surgeon today and it went well. They did an x-ray it was clear. They checked her oxygen saturations and they are at 99-100 where it should be! Yay! They weighed her and she is now at 16 lbs. 1 oz. so she's finally gained her weight back! She is able to do tummy time now and will start doing physical therapy again next week. Miss Talia has started to hold her own bottle and she is able to touch her feet and pull her socks off. We still have to work on sitting up by herself- but I think she will be doing that in no time! She now likes her exercauser and even though her feet dangle because she's too short- she doesn't seem to mind it!
Talia Updateposted on 01/16/2010
Talia had a pretty good week being back home. She went back to daycare this week and she got to see her friends William, Dillon and Anne that she missed! They missed her as well from what I heard! Dillon asked everyday if he was going to get to see Baby Talia or not. Wednesday morning, Talia had an appointment with her pediatrician for a post-surgery check up. He told us that we need to put an extra scoop of formula in her milk so she can get more calories. Talia also got an x-ray done and she had a bit of fluid in her lungs- but he increased her lasiks to 3 times a day for 2 days and that took care of it. Talia has been in a great mood- she's very happy. She gave us a bit of a scare this week- after Wednesday- she kinda stopped eating as much and we couldn't figure out the problem. I called the cardiologist yesterday and he said it was most likely not heart related since she is in a good mood and shows no other signs or symptoms. Then I called the pediatrician and his recommendation was to take her to the emergency room to check her out. We did not take her to the emergency room- instead- I made a normal bottle for her- without the extra scoop of formula and she drank it like nothing- so the problem was the extra scoop of formula in her milk. It must have been too thick for her or just didn't taste very good. I don't think the ER would have ever figured that out.Talia got to spend Friday nite with her cousin Brian! She had alot of fun watching soccer with him! Next week, talia has a check up with the heart surgeon so I'll have another updated then. Thanks again everybody for all the thoughts and prayers!
Talia Gets to Come Home!posted on 01/09/2010
Miss Talia gets to come home today! Yay! She had an echo yesterday and it looked good. She was feeling alot better yesterday and has started to eat better- she still needs to eat more but she's eating a good amount so she can come home. Grandma & Grandpa Krumbach are up visiting today and its Grandpa's birthday- so this will make his birthday extra special! Talia will be going home on her lasiks to keep the fluid off her heart and also the amioderone which will help with her irregular heart beat. Otherwise- we just have the usual precautions like every other time she's had surgery. She will be able to do tummy time in about 2 weeks.Thanks again for all your thoughts and prayers! They've helped us out so much! We love you all!

Talia Updateposted on 01/07/2010
Miss Talia has been in a recovery room for the last 2 days. She is doing ok- she has most of her ivs and lines out. Her irregular heart rate comes and goes and they give her amioderone twice a day orally for that. She is also taking lasiks twice daily as well. She got the ng tube taken out of her nose so she has been eating regularly since she's been up there. She didn't eat very good last nite, so I'm not sure what has caused that, but hopefully she'll start eating more so she can get that double chin back! :) Otherwise- that is all we know for now- we are unsure of when she will get out. Thanks again for all your thoughts and prayers! Also- if you haven't gotten your Miss Talia pendant or keychain yet- here is a link where you can get them online with a paypal account- http://misstalianecklace.tumblr.com/ Otherwise- if you don't have paypal and you want one- just let me know and I can get you one. You can email me at jillkrumbach@yahoo.com Thanks!
Miss Talia Updateposted on 01/05/2010
Miss Talia had a pretty uneventful weekend and she stayed pretty stable. They did an echo on Saturday morning and it didn't change at all. The Lunds had Christmas on Sat. at our house so Miss Talia had quite a few visitors and she got alot of fun gifts she can't wait to play with when she gets home! They did an echo yesterday morning and we had some confusion about it hearing different things from different people- but we got the right information last nite from the heart surgeon and the echo looked good. The bovine valve- tricuspid valve is working! The right side is working! The right atrium is a bit streched and has a bit of high pressure but it is fine where it is at because before she had this operation- the pressure on the right side was twice, if not three times as high. So, as of right now, Miss Talia shouldn't have to have any surgeries for awhile. Her irregular heart rate has returned so they have put her back on the amioderone medicine and that is helping. They said- those could go away at anytime and should they stay- they shouldn't last more then 6 to 12 months and she would take medicine at home for that. It has taken her longer to recover since her body has to get use to the right side of her heart doing more work. And, when she had the partial glenn- the blood flowed more towards her head and now the blood flow is the opposite direction, so her body also had to get use to that. Last nite, Miss Talia was smiling and eating better. I just talked to the nurse to see how she was thru the night and she did good and they are going to take out a couple of her IVs today and possibly send her up to a recovery room. Yay!
Talia's Heart Updateposted on 01/01/2010
An echo was done this morning and the tricuspid valve actually looked much better then it did yesterday. So, they are just going to wait a few days and see how the valve does. If it stays the same- she should be good for awhile. The valve is leaking a bit- but it is working just enough for the right side to do what it is suppose to. The valve will eventually need to be replaced- they are just not sure when. They got a mechanical valve flown in from St. Jude to use as a backup if needed. But, the goal for now is to just get her better and to get her home. As for the valve- we just pray that it works as long as possible! Talia is doing good though- she's been eating and sleeping.
Talia's Heart Updateposted on 12/31/2009
Talia is doing good and we thought she was going to be able to be in a recovery room tomorrow, but it doesn't look that way. The heart surgeon talked to Brent and he said that the bovine valve he put in to replace her tricuspid valve isn't going to work and it will need to be replaced in the next couple of days. We meet with him tomorrow morning to hear his options for the valve. So, Miss Talia is going to have to be opened up once again. Please keep her in your thoughts and prayers! I will let you know more after we know more tomorrow. Otherwise- Miss Talia is in a good mood today and is eating formula.

Talia Updateposted on 12/30/2009
Talia is doing good today. She got the breathing mask taken off this morning. She has woke up a couple times and wasn't the happiest- but thats to be expected. The nurse said she should possibly get her ivs removed tomorrow and she will either be moved up to a recovery room tomorrow nite or Friday. Otherwise- we're just hanging out for now- nothing else is new for now.

Talia Updateposted on 12/29/2009
Miss Talia is doing good today. She still has a mask on to help with her breathing since she still needs to get some fluid off of her. She will be put on a lasiks drip so she can pee some of the fluid off- so hopefully we can get rid of the mask tomorrow.She also had an echo done today and her heart looks good.Also- we got the results from Talia's EEG test from a week ago Monday and everything was normal- so no seizures. Yay! Thanks again for all your thoughts and prayers!
Talia Updateposted on 12/28/2009
Miss Talia got off the vent this morning and is awake. She is on some oxygen and has alot of snot from her cold that they are trying to get rid of. Her lactates and blood gases are ok- the aren't great, but they aren't horrible. So right now- we are just sitting tight. She is doing well otherwise. I'll let you know how she's doing later. Thank you for all the thoughts and prayers- they are working, but keep them coming!

Talia Updateposted on 12/27/2009
Miss Talia gave us a little scare about 8:00 p.m.- her lactates started to go up and they couldn't figure out what was wrong since she looked great. They did a chest x-ray and an echo and they found there was some blood around her heart- starting to clot up a little bit. So, they opened her back up and got the blood clots out and she is doing good again.

Operation was a success! posted on 12/27/2009
Miss Talia just got out of surgery and it went well! It was a long wait- but well worth it! They were able to replace the tricuspid valve with a bovine valve. They also replaced the pulmonary valve which is also a bovine valve from last time since it had a bit of leakage. When he took her off of bypass he noticed that the pressure in the upper part of her body was too high. So to counteract that he undid the partial glenn that he did last time and it worked!! The right side is now working and she will be able to have a full heart now. Thank you for all your thoughts and prayers!
Talia's Surgery is TODAY!posted on 12/27/2009
Yesterday- Miss Talia got the medicine she needed to get her heart beat regular again. Last nite the heart surgeon decided that he didn't want to wait til Monday to do surgery so she is in surgery right as I type now. We decided to do the tricuspid valve replacement and give the right side of her heart one more shot. Please keep her in your thoughts and prayers! I'll update you later once she's out of surgery.
Talia's 1st Christmas- Not So Fun! :(posted on 12/26/2009
Miss Talia didn't have a very good first Christmas. We left Omaha Wed. nite to get back to Shelby to Grandma & Grandpa Krumbach's house to beat the snowstorm. Christmas eve- Miss Talia was kind of fussy and was uncomfortable from her enlarged liver- so she didn't want to sit up much. She got lots of great presents- some toys, books, clothes, booties, jewelry and jewelry box. Christmas morning she wasn't any better and she was breathing hard, her stomach was as hard as a rock, she didn't want to really eat, and she had a bad cough and stuffy nose. We left around noon to get back to Omaha to take her to the hospital. Miss Talia got admitted and she is doing better. They did an xray last nite and she had some fluid built up around her right lung. They gave her some lasiks and that helped alot. Her xray this morning was alot clearer. They also did an echo last nite and her right atrium looked bigger then it did the previous week. They noticed today she had an irregular heart rate so they did an EKG to confirm it. They found she has an irregular heart rate called atrial tachycardia. The cardiologist said it can be corrected with medicine called amiodarone. So, we got moved from our room on the 5th floor down to the PICU so she can be monitored while she is on this medicine. She's doing fine and does not need intensive care but they just want to make sure she doesn't have any reactions to the medication. That is our plan for today and we are still waiting to see if we will have surgery next week or not since Miss Talia has a bad cough and runny nose- it might get postponed. We'll keep you updated on how she is. Thanks for all the thoughts and prayers! Hope everyone had a Merry Christmas!

Thanks again mom and for letting me share your daughter's story!

Andre

This little boy is a fighter! Just look at his picture! I want to thank his family for letting me share his story with everyone.

Andre's Medical Journey To Date
Diagnosis: At 6 months of gestation, he was diagnosed with Ebstein's Anomaly; by the time he was born, he was diagnosed with Critical Pulmonary Stenosis, Dysplastic Tricuspid Valve , Enlarged Right Atrium.:: May 1st 2008 - Minutes after he was born, he spent 5 days in Neonatal Intensive Care Unit (NICU);:: June 18th 2008 - He underwent a heart procedure called Valvuloplasty/Valvoplasty. Spent 4 nights in Pediatric Intensive Care Unit (PICU);:: August 4th 2008 - He underwent open-heart surgery called Glenn Shunt. Spent 2 nights in PACU (Post-Anesthesia Care Unit), then 3 nights in recovery unit.
You can read more about Andre's heart story and detailed medical journey on the right hand side of this page, starting from the bottom.

Andre's Current Medical Lifelines
:: Garden City Pediatrics Assoc
:: Floalting Hospital for Children at Tufts Medical Center
:: Boston Children's Hospital

Next Medical Appointments
:: Cardiologist» February ?? 2010 (took place on December 2nd 2009 as a precautionary measure prior to trip to Australia. Next appointment date: June 2010):: Pediatrician» January 8th 2010 (postponed until we return from Australia)

Andre's Tid Bits
Last update: 10/13/09:: What is Andre's birth date?» May 1st.:: How much does Andre weigh and how tall is he?» 25.2 pounds (as at 04/16/09) and 28 inches» 24.44 pounds (as of 06/05/09) and 30 inches.» 25.12 pounds (as of 07/07/ 09). » 28 pounds and 31 inches (as at 09/18/09)Updates:» The pediatrician wants to see Andre again in July for weight check because he seemed to have lost some weight. This weight loss is to be expected but because of his heart issues, he wants to ensure we are not overlooking anything.» At the appointment on 07/07/09, pediatrician was very happy that Andre gained his weight back, i.e. 25.12 pounds.:: How many teeth does he have now?» In November 2008, 2 came out on the bottom.» In January 2009, another 2 came out on top and 2 on the bottom, all at once!Updates:» In April 2009, another 2 came out on top.» In June 2009, Andre had his first molar on the bottom right. That was painful!!» In July 2009, two new molars came out, the two top right. We were not having a fun time with those!» In October 2009, too many! All his front and bottom teeth came out, a few more molars to go!!TOTAL: too many!:: What does Andre eat and drink?» Wholemilk - 8 ounces - 3 times a day» Vegetables with or without chicken or with brown rice - 3 tablespoons once a day» Fruits - 3 tablespoons once a day» Yogurt - 4 ounces a day» Snacks - American Cheese, Cookie, Rice Puffs» Apple Juice - 4 ounces a dayUpdates as of 10/13/09»WholeMilk - 1 to 2 cups a day diluted with water 50/50;» Vegetables with or without chicken/meat or with brown rice - 4 tablespoons once a day;» Fruits - 3 tablespoons once a day;» Yogurt - 4 ounces a day;» Snacks - American Cheese, Cookie, Rice Puffs, Gerber Snacks;» Apple/Orange Juice Diluted with Juice served throughout the day.» GRAPES - LOVES HIS GRAPES!:: What fruits and vegetables does Andre eat?» It's a mixture of 2-3 different fruits and vegetables alike. They are all home-made based on Gerber suggested menu and pediatrician recommendation.» Fruits are: bananas, apples,pears, strawberries, blueberries, black berries, pineapple» Vegetables are: squash, sweet potatoes, spinach, green beans, corn, carrot, peasUpdates as of 05/01/09He eats small pieces of white bread with cheese, pizza crust, whole banana, meat, any table foods really -- not a fussy little guy so far!:: Does he eat any meats? » He only eats chicken for now.Updates as of 05/01/09» He eats meat as well.:: What are Andre's sleeping habits?» He has one morning nap around 9:30am and afternoon nap around 2:30pm. He is ready for bed at night around 7:30pm and wakes up around 6:30am. He has been sleeping through the night (since the age of 6 months) but the duration of his naps vary between 45 minutes to 1h30 minutes.Updates» As of 05/01/09 He has one morning nap around 9:00am and afternoon nap around 3:00pm. He is ready for bed at night around 8:00pm and wakes up around 7:30am.» As of 06/05/09 Andre is skipping his morning nap, has much between 12pm - 1pm, naps around 3:00pm for 1.5 - 2 hours, then he is ready for bed at between 8:30pm - 9:00pm and wakes up between 8:00am - 9:00am.:: What words can Andre say?» Dadadada (the very first one he ever said)» Babababa» TatatatataUpdates» As of 05/01/09 - Lalalalala» As of 06/03/09 - Mamama (FINALLY!!)» As of 10/13/09 - As per pediatrician's advice, early intervention is set for 10/14/09 because his vocabulary for a 17 months comprises of only consonant sounds, no specific words are articulated yet. He is able to recognize words and point to them but that's how far it goes. He also makes a lot of high and low pitching sounds as if he was having a conversation.:: How many words can Andre relate?» By asking to show the following words, he either reaches for the object or points his eyes towards the person or object.» These words are so far: mamma, dadda, balloons, pretty lights, cat, dog, bird, blanket, rattle, ball, toes, fingers, bib, winnie (the pooh), frog, phone, bananas, monkey, bunny.Updates:» 3/28/09 Andre shows his tongue when asked;» 3/20/09 Andre shows his nose when asked (only to his mommy so far); daddy did sneak in to watch once.» As of 4/2/09, Andre does it all the time with anyone.» 4/12/09 Andre opens and closes his eyes or fingers when asked.» As of 05/01/09, other new words he either reaches for the object or points his eyes towards the person or object - books, truck, bus, cars, juice (his sippy cup), shoes.» As of 05/13/09, other new words he either reaches for the object or points his eyes towards the person or object - truck.» As of 06/05/09, ther new words he either reaches for the object or points his eyes towards the person, object, body parts - Shannon and Ken (next door neighbors), Lynda (heart mom), ears, head, hair, leg.» As of 08/02/09 - other new words he either reaches for the object or points his eyes towards the person or object -heart, tummy, cheek, toes, teeth, mouth, plane, birds, trees, kiss (he gives you his cheek to kiss him).» As of 10/13/09 - we follow Your Baby Can Read program, don't watch the DVDs often but only the cards and books, and so far he knows all the words from Vol 1-4.:: Can Andre roll over/crawl/stand up/walk?Andre can:» roll over on either sides;» put himself on all fours but has not learn to crawl yet but we can tell it is very imminent;» pull himself up to stand up with a little of help. He stands well on this two feet, even does a little dance routine for us.» not walk yet.Updates:» 3/7/09 - Andre finally can pull himself to stand up!» 3/11/09 -It is confirmed - Andre can crawl now!» 5/01/09 - Andre crawls like a champ, stands up using one hand, stands on his own until he realizes it, then falls down again on his behind - his confidence is not quite there yet but he is progressing.» 06/05/09 - Andre is walking like a champ using his Fisher Price walker!» 07/26/09 - Andre is walking all on his own!:: What else can Andre do?He can:» do high five;» gives big hugs by eskimo kisses (nose-to-nose);» play peek-a-boo (his version is "where's Andre") and he puts his head into our hand to cover his eyes or he takes our hand with his hand;» he imitates some the sounds we make, like coughing, and making sound noises through his lips, leaning on one side to another when he is sitting in this booster chair;» do "bye bye" by opening and closing his hand;» laugh a lot when we make funny gestures with our heads;» laugh a lot when his diaper is changed and we use the word "poooooey", signifying to him that it stinks by also pinching our nose while we are at it - it's the funniest thing to watch;» play on his own for a significant amount of timeUpdates:» bring his toys to us when he wants us to play with him; goes to this bedroom to fetch more toys to bring in the living room or kitchen to play.» goes to do what we tell him to reach or do - like bringing the ball, truck which are in another room so that 'mommy' and 'daddy' can play with him.» finally learned to clap his hands, and raise his arms in the haor with the song "If you are happy and you know it, shout hooray"» knows who grandpa and grandma are via Skype. He even give them hugs (hugs the computer monitor), and brings them toys and books.:: What else Andre likes to do?» He loves his books, especially the story about 5 little ducks which has a button to make "quacking sound" which can be pressed when needed throughout the story. He also loves a book with all the animals A - Z and he loves to the turn the pages all by himself. His third favorite book is a touch-and-feel book about a duck, dog, pig, sheep, bunny rabbit, and a cat.» He loves to chill in this Fisher Price bouncer, watching the fishes, and play with the ornaments; when he gets bored, he knows how to bounce himself really hard by pushing on his legs.Updates:» 05/01/09 -Andre no longer uses his bouncer because he was getting too heavy for it. He now has new infant/toddler chair and he is yet to get used to it because he would rather be on the floor playing;» With the warmer weather, Andre loves his walk in the stroller,watching everything that is going on around him;» He also like to play outdoors with his toys.:: What are Andre's Favorite Toys?Andre's favorite toys are:» Fisher Price Jumperoo;» Fisher Price Sing-Along Musical Stage;» Learning Frog Musical Table;» Soccer ball, empty plastic bowl, crinkling-sound book, rattles, Baby Einstein Jaques The Peacock.Updates:» Andre received new toys for his 1st birthday and loves to play with all of them. They are: Fisher Price Interactive Baby Grand Piano, Fisher Price Laugh and Learn Learning Musical Puppy, Tonka Monster Truck (his favorite of them all!).:: Does Andre watch any TV?» The only thing Andre is allowed to watch his Your Baby Can Read DVDs once a day. On very rare occasions, he is allowed to watch Clifford, The Big Red Dog and Curious George.:: Finally, are there anything concerning about Andre's baby skills, after have been through so much in 2008?» Since his open-heart surgery in August 2008, he had to be picked a certain way for a while. Therefore he missed out on a lot of tummy time that were expected at that age. Once he was allowed to have tummy time, he completely hated it. We decided that we will not interfere, and let his little body recuperate by itself.» It was not until the age was 8 months old that he rolled over his tummy to sleep, all by himself. He now has no problems with being on his tummy time which he also does all by himself while playing with his toys.» We are little concerned about the progress he is making in terms of his ability to crawl/standing up/walking; as far as we see, he is really trying, he gets frustrated at times, and for us, that is progress and that is all we can ask for.Updates:» The pediatrician wants to evaluate Andre if he is not walking by the age of 15 months.» Andre is finally working on his own on July 26th! He went to pick up his Monster truck in the kitchen and walked all the way there from the living room. He made it by 5 days before the pediatrician wanted to intervene. Woo hoo!! Now mommy needs to wear her sneakers to keep up with his running feet!» Early intervention is set for 10/14/09 because the pediatrician suspects that he may be falling a little behind and he does not want Andre to be frustrated by it when he reaches 2 years old.

You can read more about Andre on his blog-the link is listed to the left. Please visit his blog and learn more about him!

hmmm...I wonder if this is how God does pick?

The Special Mother
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.
"Armstrong, Beth; son. Patron saint...give her Gerard. He's used to profanity."
"Forrest, Marjorie; daughter. Patron saint, Cecelia."
"Rutledge, Carrie; twins. Patron saint, Matthew."
Finally He passes a name to an angel and smiles, "Give her a handicapped child."
The angel is curious. "Why this one God? She's so happy."
"Exactly," smiles God, "Could I give a handicapped child to a mother who does not know laughter? That would be cruel."
"But has she patience?" asks the angel.
"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it."
"I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I'm going to give her has her own world. She has to make her live in her world and that's not going to be easy."
"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness." The angel gasps - "selfishness? is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'". She will never consider a "step" ordinary. When her child says 'Momma' for the first time, she will be present at a miracle, and will know it!"
"I will permit her to see clearly the things I see...ignorance, cruelty, prejudice....and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life, because she is doing My work as surely as if she is here by My side".
"And what about her Patron saint?" asks the angel, his pen poised in mid-air.
God smiles, "A mirror will suffice."

It's that time!

Congenital Heart Defect Awareness Week!

Every year since Torie was born, it has been my goal to spread awareness about CHDs. There is nothing like the shock of finding out something is wrong with your baby, and when that happens, you need all the support and education you can get! I have been lucky to meet several hundred online families who have supported us through the great times, scary times, fun times, through surgery, and still today-when Torie is 3 1/2 years old. We talk online, through txt or email. We talk about every day life but our conversations always evolve around our heart babies*.

* "babies" does not always mean infants...some of our heart babies in are grade school even!

Through this week and throughout this month my goal is to share not only our story, but those who will let me tell theirs. I am also going to provide educational information. Stick with me this week, and see what it is like to spend a day in the life of a heart family!

GOD IS GOOD!!

Tonya posted a new update on Katie, who is waiting on a heart transplant....The prayers are working-please keep her in your thoughts and prayers!

What an AWESOME day!!!!!
Katie had her weekly cardiologist appt. today with Dr. Parsons. We were cautiously optimistic about the fluid issue with Katie. For the last week we have been getting less and less fluid each time we tried to drain her. We've not been getting much of anything (I'm talking like 2mL) off the left and less than 100 off the right with it going down each time we drew it off. Today we got 18mL and that was really pulling until she started crying saying it was hurting her back. So we went to her card. (we were supposed to be there at 9am, but they called us 5 min. before we were about to leave to tell us that Dr. Parsons was stuck in traffic on Signal Mtn.-a tree had fallen across the road). They rescheduled us for noon. We all wore our Princess Katie shirts, which are now known as our lucky shirts! We wore them not only for Katie, but because today was Go Red Day for Women and starts CHD Awareness Week. All the secretaries and nurses loved them! They all want bracelets too! We headed off to x-ray first and I just had a good feeling about it. When we got back there (of course they ALL know Katie and her fluid issues), they asked if we were having any problems or was it just a check-up. I told her that we were hopeful for less fluid because we weren't getting much when we tried to pull it off. As we were waiting in the waiting room for them to tell us the x-ray was good, the lady that did it stuck her head out to tell us we could go back up and she mouthed to me that they looked good and gave me a big smile....by now, I am really getting excited! We go back up and head back to our room when we saw Dr. Parsons in the hall. Shane told him that he wanted him to look at the x-rays as soon as possible, because we were barely getting anything. He said that could be good or bad (the tubes could be clogged). So off he went right then to look at them. He came back smiling and said, "They are spectacular!!!!" I am on cloud nine! We go to look at the x-ray and I am in shock. I don't think I have seen x-rays THAT clear since probably before her surgery last June!!! I am talking no haze, nothing!!! It completely threw Dr. P. for a loop. He didn't know what to do! We could see his brain working overtime trying to figure this out! We go back to the room and he listens to hear and he told Katie, "I can actually hear you breathing now!" Her O2 was 83 and her blood pressure was a little low. At first it was 70something over I think 45. Then he took it again and it was 80 something over I think 48. I can't remember because I am still giddy over the x-ray! He decided to take her off the Coreg since that is a blood pressure med. She's on like 3 med. for bp. He felt that med. would be the least likely to cause any prob. by coming off it. By the way, she weighs 32 lbs. now. He took a quick echo and all looked good! He kept going back and forth on what to do next. He was like us, not wanting to do anything that would cause it to come back. So for now, we are still going to try to pull off any fluid, but if there is any resistance don't keep trying. We will see him again Wed. If everything still looks good, we will go back for an x-ray on Mon. and see him at the end of the week. Then we may try not draining anything for a few days and then go for an x-ray. If it is still gone, we will be setting up an appt. with Atlanta to have the tubes REMOVED!!! Now, the tubes will probably require a little surgery since they have been in there so long. It is quite unusual for them to be in there long-term and they are pretty sure they will have to close the hole from the inside out. We did have one of the nurses change the tagaderm around the right one, because it was starting to get gooey which Katie was not happy about. Dr. P. even ventured in to try to help. He really doesn't like to do things that hurt her. After we were done he gave her several kisses on the head and then when we were getting ready to go, he bent down and held his arms open and Katie gave him a big hug! I could tell he was really happy about the fluid being completely gone! He even took her back to his office to get a sucker! Dr. Parsons said whatever you have been doing for the last two weeks, keep doing it. I said, "Praying!" He said, "Well, keep doing it!" He said that the fenestration and the revatio (Viagra) was probably what cleared it up, and it may have had something to do with it, but I know without a doubt that God laid His Hand on Katie and dried it up. That's the prayer I have prayed SOOOO many times (along with many other people). The last stop was for labs which was also not on Katie's list of fun things to do. Afterwards we had to head to McD's for her usual chicken nuggets. We are still trying to process this wonderful miracle. God is so great!!! I know that He heard all those prayers coming up and is healing her body. It's in His time not our time! I think Katie needed to go through this to touch so many people's lives and bring more people to Him. She is truly a special gift from God. I just want everyone to know as far as any funds that we are receiving for Katie, they are being put into HER fund to be used only for her (meds, etc.). I often feel guilty about receiving so much, because I know others need it as well. I also don't want people to think, well we gave her this money, and now she doesn't have to have a transplant. Katie's future is still uncertain and chances are that at some point she will have to have that transplant. If it is this year or 20 years from now...that money will be there for her. We thank everyone that has given for Katie whether it is money or most importantly in prayers. We are so grateful. We love you all! Please continue to keep Katie in your prayers and that God keeps that fluid gone. Those prayers are powerful and Katie is LIVING proof of that! :o)

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snowprincesspageants.blogspot.com

Please support this pageant and the Ronald McDonald House. This will support CHD awareness also.

while is lasted....

the snow was fun, while it lasted...of course Torie's cough and sinus got much worse and we spent monday at the ped's office. I will be so happy when Torie is older and understands that going to the dr does not always mean she has to cry... The poor girl has had so much done to her, that she instantly began crying when dr lowe came in. Feb 7 thru the 14 is CHD Awareness Week!! Woo Hoo! Let's all think about those babies ( not just mine) who need help with their heart defects. I am sure you all remember my posts about little Katie who is only 3 yrs old and needs a heart transplant! I will share more stories through out this month, and will share Torie's again as well. I'll recap it, with some pics as well.