Just Hangin' Out!

Grandma and PaPa stop by for a special visit today after long awaiting!

I believe Dani Jo has made PaPa's day!

Hi everyone,

It seems that all we do is take pictures of our family with our newest addition. Dani Jo seems very happy and smiles all the time.

Joey and I have been blessed with 3 beautiful angels. We have had some hard times, but today our eyes were opened as we went to Tessa's memorial service. As we looked into the eyes of our dear friends Nancy & Anthony today, our hearts were broken for them. I have posted a picture of our dear friends, please say prayers for this family. They have touched our lives more than they ever know. Please pray for peace and strength for our friends.

Anthony, Nancy & Little Angel "Tessa" Woodyard
www.nancyandbaby.blogspot.com
Please go and read her story!

We thought we would post several pictures this time and post blog news later...in a nut shell Dani Jo has loved her time at home.

This is one little girl that is glad her sissy is home!

Mama Teresa says good-bye to her darlin' Dani Jo.

The Hearl Girlz share a moment together!

Dani Jo is all smiles at home!

Dani Jo enjoys her first bath at home in her new tub that Mama Nurse Teresa bought for her.

Ryan finally gets to snuggle with his girl Dani Jo.

Dani Jo really likes her new nurse Amber & I don't think that Amber minds her either.

Sweet Tessa!

Hello everyone,

Please say a special prayer for our very special friends, Nancy and Anthony Woodyard in the loss of their baby girl. Dani Jo and Tessa were room mates at Brenners for a short while. After a long fight, God called Tessa home to be with Him yesterday. Please say a prayer for her parents. Go to www.nancyandbaby.blogspot.com to read about our sweet little Tessa. We love you Tessa and we know that God has you in His arms!

Night Night...Sweet Dreams!

Home Sweet Home!

Tonight, Amanda and I are at home with all of our girls. Dani Jo is sound asleep in her crib. She came home this morning about 11:30. Thank you Michelle and the Cana Rescue Squad for bringing her home safely this morning.

We have our nursing completely staffed. Thank you Interim Healthcare. We met our 1st nurse, Michelle, today. We are very excited about her helping us take care of Dani Jo.

I'll try to post some pictures sometime tomorrow. This afternoon has been a blur. We have been very busy getting all of her equipment set up and getting the nursing all squared away.

We had several visitors today--Aunt Jenn Jenn, Whitney & Ryan, Gram Jane & Papa Dickie, Melanie & Janice, Wayne & Lake--thank you all for your visit today.

Thank you Brenner's Children's Center for all your hard work and dedication to our little baby girl. Teresa, Karen, Lori, Jake, Dr. Parsons, Brian, Erin, Michelle, Pat, the twins, and all of you (I'm sure I left several out, sorry.) Thank you so much. We never imagined when Dani Jo came to you on October 14, that she would be there for 100 days. However, if she couldn't be with us during this time, we are grateful she was with you all.

God bless each and everyone of you that prayed for our little angel and our family. Your faithful prayers will not go unrewarded. Please remember all of the other babies in Brenner's. We were blessed to be able to come home today. We left many parents still waiting for their special day to bring their angel home. One special baby we will remember is Tessa. Anthony and Nancy, we are praying for her and you all. God does not fail.

We love you all,
Joey, Amanda, Jordan, Jamie, and Dani Jo

SHES COMING HOME!!!!

Tuesday is the big day! Dani Jo is coming home! We have all 3 nurses ready to go.

I had a meeting on Wednesday with the Social Worker, the doctor and 2 nurses. I had asked to meet with them to express some feelings that we had. We were told 2 1/2 weeks ago that Dani Jo was medically ready to come home, however the doctors felt that we would get too tired and also they were afraid that Dani Jo may not be covered by insurance since all 3 nurses were not lined up at the time. This was the "assumption" by the doctor that she would not be covered.

We called our case worker at our insurance company on Tuesday of this week just to see if they would cover her if nurses weren't line up. Our case worker stated that "under no circumstances would Dani Jo "not" be covered". This was never confirmed 2 weeks ago it was just assumed. It was also said that this was explained to the social worker at the hospital last week. So we were a bit annoyed when we found this out, so I called for a meeting. I explained at the meeting that we were frustrated that Dani Jo could have possibly come home 2 weeks ago if the insurance information had been verified at that point.

I explained to all of them that I have arranged for Cana Rescue Squad to pick Dani Jo up either Monday or Tuesday. I was told that we did not have any nurses, however I explained that after talking with Amanda at Interim right before the meeting that we did have one nurse, and potentially a second, which was also explained to the social worker last week. I expressed that if Dani Jo was medically ready to come home, then I was requesting that Dani Jo's discharge be Monday or Tuesday. The transport set up for either of those days.

We have just received a phone call from Amanda at Interim with WONDERFUL news that we now have a 3rd nurse! By the 3rd week we should have 7 12's covered! God is still in control.

Please pray for us as we bring our long awaited bundle of joy home. She has been doing awesome all week. She has been smiling to all the nurses. The best news of all is that we have our sweet Dr. Parsons that will discharge Dani Jo on Tuesday. We are meeting with the Pediatric Specialists to go over her equipment on Monday morning at 10am and plan to bring her home at 9am Tuesday morning.

We just want to thank you all for your gifts, prayers, cards, calls, thoughts, and dedication towards our family in this our time of need. The road is all but over, our journey has just begun. Dani Jo has a long road ahead of her, but with our continued prayer and God's unconditional love, we will make it.

Dani Jo will not be able to have a lot of visitors throughout the winter months as she is more prone to respiratory infections due to the trach being an open airway to her lungs. As she grows and the days get warmer we hope to be able to take her out more and receive more visitors. We will continue to keep you all posted on our site with recent pics and her status. Thank you all again for your prayers. We love you all very much more than we can express!

Happy Girl!

Our girl is growing more everyday! She weighed 8lbs 3oz today! I can't believe how big she is getting. Her nurse Lori put her in her swing today and she was off the vent quite a bit. We are ready for our girl to come home.

Nurse Update:
I talked with Interim today and we have 2 nurses hired to care for Dani Jo! YEA! I want to thank Amanda and Amber and all the people at Interim for working so hard to try to hire just the right nurses for our angel. Hopefully they are going to be interviewing another nurse on Wednesday and we should know something by the end of next week. All the nurses have to do is meet Dani Jo and all other fears will go away! She is so precious and touches everyone that she meets.
___________________________________________________________________

Our Special Prayer Today.

We are saddened today because of a special loss. One of Dani Jo Suite mates in the NICU passed away yesterday. He was a very special baby and we will miss him greatly already. We visited him everyday as we visited Dani Jo and now he is in the arms of Jesus just where he belongs. God has a special rocking chair for all those babies gone on to be with him

--Night Night, Sweet Dreams, sweet Maudey--

January 8

Dani Jo continues to do well. She seems to get more and more alert each day. Amanda and I weren't able to get to the hospital tonight; however, my sister was able to visit with her for about an hour tonight. (See pic) Jennifer said Dani Jo was off the ventilator for about an hour while she held her. She said that she did great the whole time she was off.

The nursing agency was supposed to interview two possible home healthcare nurses today. We haven't heard yet as to how that went. Hopefully it won't be too much longer before we get her home.

We love you all and thank you so much for everything.

Joey, Amanda, Jordan, Jamie, & Dani Jo

Happy New Year!

Dani Jo is starting to come out!!!!

Happy New Year everyone! I hope you all didn't make too many resolutions that you can't keep---I've started weight watchers 3 times and it is only day 5 of January--Ha Ha! (This is Amanda talking by the way---I am going to "re-start" on this Tuesday for sure this time lol)...

Anyway, we just wanted you all to see our little pride and joy is growing!!! Can you believe it? Over the past week, Dani Jo has been smiling and interacting with us more everyday! I caught half of a smile in the picture above. You know how it is, you hold the camera all the time and just when you lay it down or forget it, they do the cutest things! Well, I hope that maybe we will see this on a daily basis very soon!

I talked with the Doctors last week. Dr. Block has taken over Dani Jo's case from this point on. His plan for her is to move along the process of staffing nurses for Dani Jo. This has shown evident just this week. I spoke with the RN at the nursing agency yesterday and she has 1 nurse hired and 2 more coming in on Tuesday that are very interested in Dani Jo's care.

A Big THANK YOU to Amanda, Amber, Bobbi & all of you at Interim Healthcare from Galax for all your hard work you all have done thus far and we know in our hearts that it is only the beginning of how hard you will work to get what Dani Jo needs! We look forward in working with you on a daily basis to get what is best for Dani Jo.

I know that God is working in our favor: Beloved, now are we the sons of God, and it doth not yet appear what we shall be: but we know that, when he shall appear, we shall be like him; for we shall see him as he is. 1 John 3:2 KJV

Even though we cannot see what the future holds, we know who holds our future! My God is an AWESOME GOD! Please know that we are trusting in our Father above for everything! God has given Dani Jo to us for a reason and only God knows this reason and one day will know His plan, but until then we have to believe that God is in control of all situations~

I was reading on the sovereignty of God and it refers to the fact that God can simply do whatever He wants, whenever He wants, to whomever He wants and however He wants. In other words, God is completely free to do whatever He wants either in heaven above or on this earth below.

Webster's dictionary describes the word sovereign as:
"One who exercises supreme, permanent authority. Self-governing, independent, having supreme rank or power, complete independence, the right to exercise supreme power and dominion." I believe that God is sovereign in all of His ways. He can heal who He wants, protect who He wants, help who He wants and have mercy on who He wants. God cannot "cause" evil to occur since there is no darkness in Him - but He can "allow" things to happen.

The Bible tells us that the gift of healing is one of the gifts of the Holy Spirit and that each one of these gifts - including the gift of healing - is a manifestation as God wills, not as we will!

It will manifest when God chooses to manifest it, and the best we can do is to approach God in prayer and try to persuade Him to move on a particular situation with His healing power.
We are to ask, to seek, to knock, to state our case before Him as to why we would like Him to release His healing power - but the final decision will always belong to God as to whether or not He is going to sovereignly choose to heal someone in a particular situation. God gives us daily tests to see just how strong our faith is!

Mar 4:37
And there arose a great storm of wind, and the waves beat into the ship, so that it was now full.

Mar 4:38
And he was in the hinder part of the ship, asleep on a pillow: and they awake him, and say unto him, Master, carest thou not that we perish?

Mar 4:39
And he arose, and rebuked the wind, and said unto the sea, Peace, be still. And the wind ceased, and there was a great calm.

Mar 4:40
And he said unto them, Why are ye so fearful? how is it that ye have no faith?

The past few months have been quite difficult for me to deal with , as well as for my husband. I think we both have felt like we were on a sinking ship at times. That is why after reading the above verses tonight God spoke so boldly to me.

In the above verses the disciples find themselves quite literally on a ship that they feared was sinking. A tremendous storm had arisen, and water was flooding into the ship.

Through of all of this, their Master and leader was sleeping. They felt that their lives were in great danger. They were somewhat angry and upset that Jesus would allow all of this to happen while He slept.

Upon being awakened, Jesus first calmed the storm with three simple words, "Peace, Be Still" and then He rebuked His disciples for their lack of faith. He questions, "How is it that you have no faith?" as if to say, "If I (Jesus) am in your boat, how could it possibly sink?"

Here the disciples were on a boat with the very one who had created the waters and the seas, and yet they had so little faith that they feared for their lives.

It is easy for us as Christians to look at the disciples and question their faith, yet we are guilty of the same lack of faith in our daily lives. We have Jesus living inside of us; He is always on board when our boats set out to sea. Yet we let the stresses and problems of life overtake us to the point that we think our boat is about to sink.

Regardless of the source of our stress, whether it is from sickness, weariness, overload at work, placement on a new project, tension with family members, or struggles at our churches, the simple fact of the matter is this: if Jesus is in our boat, it can never sink!

All we as Christians have to do is show a little faith when times get difficult. It is easy for us to call ourselves faithful when things are going well and our boat is sailing smoothly along, but the true test of faith is when the storms and tides start to come in.

I don't know why God has chosen our family to go through the things we have, but it is not for us to question--It is only for God to know; we are only to prove to God just how much we love Him and believe that He will be with us as our storms rage. Maybe it is to show others that no matter what happens in our lives that every situation is just a test that God gives us when He is trying to get "our" attention. Or just maybe it was so that we would create this site so that others can see that God is in charge of our lives and life is easier when we turn to Him for wisdom, strength, and guidance.

No matter what you are going through, my mom always said, that God will bring you through. My mom was diagnosed with Polio upon the early months of her life, however she never used her disease as a "crutch" yet she always thanked God. As her "Homegoing" approached she developed Breast and Brain Cancer--even in the tough days, she never complained, but always assured that God was her Savior and that no matter what, He was in control!

Please don't look at our family with pity, but know that we are God's children and He gives us strength to overcome anything!

If Jesus is in our boat, we will never sink.
If Jesus is not in our boat, perhaps we need to find Him as our new Captain.

Sorry this was so long, God just put this on my heart as I was reading my devotions for the night and felt led to share my thoughts to you all!

We love you all!
Amanda

THANK YOU!!!!

Toby Tracheasaurus

Thank you Aunt Jenn Jenn for my new Toby Toy---I can't wait until I can get home and play with him. This will be my very special toy...I love you and look forward to coming home soon!

Thank you all for gifts that were given to our family this Christmas season. Your gifts of love were overwhelming with joy and our family will never find the words to say how much we have for each of you. May God truly bless you all for your kindness even though we may not be able to personally thank each of you. Happy New Year to you all...

The Hearls

January 1, 2008 (Happy New Year!)

Yesterday was a very frustrating day at the hospital. We received a phone call last Wednesday afternoon that they were going to discharge Dani Jo on that Friday. We got all excited, only to be disappointed the next day, when the hospital called back and said that they didn't want to send her home over the weekend and the New Year holiday. They rescheduled her discharge date for Wednesday, Jan. 2. When we got to the hospital yesterday, we were against disappointed. The doctor said that Dani Jo would not be allowed to come home until all of the at-home nursing was taken care of and lined up. She said that Dani Jo was healthy enough to come home, but she felt like it would be too much of a burden on Amanda and I to take care of her without a nurse. I had a lengthy, heated discussion with the doctor and told her that if my child was healthy enough to be discharged and we were ready to take her home, then it should be our decision as to what is too much of a burden on my family. Nursing care for Dani Jo will only be from 7 AM - 7 PM anyway. We will be taking care of her by ourselves at night. The doctor expressed that it would be unfair to Amanda and I to have to do it all on our own. I expressed that I thought it was unfair for someone else to decide what is a burden for me and my family. I explained that driving to Winston everyday and leaving Jordan and Jamie with different people was more of a burden than they could realize. I also expressed my frustration with the hospital giving us a definite discharge date of Wednesday if they knew nursing care wasn't completely taken care of. Long story short, the hospital is not going to discharge Dani Jo until the nursing agency has a full staff to take care of Dani Jo for 12 hours a day at home.

Please pray that they will find the nurses for Dani Jo soon, so that she will be able to come home soon. Thank you all for all your continued prayers. Happy New Year.

MERRY CHRISTMAS!

Merry Christmas from
Joey, Amanda, Jordan, Jamie, & Dani Jo Hearl!

Just a quick update: We have had an awesome day! We got up this morning and spent Christmas morning with Jordan and Jamie, then we went down to the hospital around 7pm this evening. Dani Jo has had an awesome day! She has gotten up to her full feeds post surgery and stooling regularly. She has also been put back on her home vent and is doing fantastic! When we got there we were all able to sneak back for a couple of minutes for a long overdue, family pic! I can't believe it, we were all together! We hope we will be at home together very soon! What a wonderful Christmas this has been! Thank you all again from the bottom of our hearts for everything! We love you all and Merry Christmas!

We have never been more happier--Christmas definitely has a new meaning for our family. What a Christmas gift God has given us this year! We give all honor and glory to GOD!

Happy Birthday Jesus!

Christmas Eve

Special "thank you" to my sister, Michelle Jenkins & Suzanne Avera, owner of Heavenly Angels Photography of Mount Airy,
for creating & designing the above Christmas Cards for my family.

UPDATE:

Dani Jo has had an awesome weekend! She is back to her old self!!! She has been stooling regular and eating very well. They finally put a colostomy bag on her instead of the gauze. We have high hopes over the next week. The doctors are planning on putting Dani Jo back on the home vent in the next few days. The heater from the hospital is too powerful for the home vent and so they have to get one that is compatible to her home vent. If all goes well over the next week, we may be getting her home soon--maybe by the first of the year! Just keep praying! They have her on "ad lib" feedings--(as she wants). She had 2oz last feeding!
She is a little piggy!

The nurses say she has a little bit of a temper when it is time to eat and they don't get it to her fast enough! Hee Hee--I don't know where she gets that from!!!

We just called to check on her and the nurse says that they have her all dolled up for Christmas--Christmas outfit, Christmas sheet & blanket, so we will definitely post some pics of her tomorrow! We can't wait to see her tomorrow. We are planning on spending Christmas morning with Jordan and Jamie and going to the hospital in the afternoon!

Thank you all again for your monetary gifts, cards, calls, food, & most of all your prayers this holiday season. You will never know how much you have touched our lives and our family! There will be many stars in your heavenly crown!! You all have shown what Christmas is truly all about! Jesus has blessed our family with such a wonderful circle of friends and family!

It may be a few weeks before Dani Jo can have visitors when she comes home, not so much because of the Hypoventilation Syndrome, but because she is a preemie and she is more prone to RSV and infections.

I would like to send an open invitation to you all to visit her as soon as she can have visitors. We are planning on keeping her site going after she comes home, so keep checking as you can for updates and when she is ready for visitors.

We love you and want each of you to be a part of her life. We want her to know each of you and the prayers that went up--not necessarily the material gifts, but to know each of you as her friend and spiritual family. We teach our girls to pray and that God answers prayer--when Jordan prays for Dani Jo she knows that God hears her, as evident of what has taken place already. I know Jordan is only 4 but she knows that God will hear our prayers and answers them
according to His will and earnestly prays for Dani Jo each day.

I know this was long, but we may not get to post for a couple of days and we just wanted to thank you all for EVERYTHING you ALL have done for us. We wish you all a very Merry Christmas and New Year! We love you ALL!!!!!!!

The Hearl's
Joey, Amanda, Jordan, Jamie, & Dani Jo

December 21 (4:00 PM)

Sorry for the delay in posting. Trying to get ready for Christmas. Here's a breakdown of what's happened the past few days.

Tuesday & Wednesday--Dani Jo was knocked out from the pain medication. The stomas from the surgery looked well. They started to decrease her medication on Wed. in hopes of getting her awake and on the track to recovery.

Last Night--She was much more alert and awake. Still not feeding yet. She was beginning to stool through the colostomy. Yeah!! She was very pale last night. Her white blood count (I think it was white) was low, so they needed to give her about 2 oz. of blood to help this out. They tried to stick her for an IV for about 2 hours. They finally got one to stay and work in her arm after about 7-8 sticks. They gave her the blood she needed last night.

Today: Amanda went to see her today. She said Dani Jo looked much better and had much more color to her. They began to feed her today with the bottle. She's only getting 7 cc right now each feeding. Dani Jo's not happy about that. She is used to getting 70-80 each feeding.

I think a realistic possibility of her coming home may be around the first week of January. She still has to get her feedings up to normal and be transferred back to the home ventilator. I'll try to post some new pics sometime this weekend.

Thank you Chestnut Grove for everything you have done for my family. You all have become family to us. Your good deeds will not go unrewarded. Thank you.

God bless,
Joey

She is back from Surgery!

Dani Jo is back from surgery...it is now 7:44pm. We are still waiting for her nurse to get her all setup. Surgery went well--the Hirschsprungs was large so they ended up doing a Colostomy. She will have this for a few months and then will have another surgery. We will have to learn to change the colostomy bag and get her back on her feedings before she can come home. Doctors say if all goes well, she may get to come home in 3-5 days...this means maybe for Christmas---we will not get our hopes up--but we will pray.

(from Dani Jo) A special thank you to Whitney for coming to see me before my surgery and to my Grandma June for sitting with mommy and daddy during my surgery. I can't wait until I can come home and you can spoil me rotten!

We would love to list each of you that prayed for Dani Jo, but I know that we would miss many--but we THANK you ALL for praying so much today and everyday. Dani Jo would not be here today without your daily prayers. I know God is in control and He has His big hands on her daily...

We will keep you posted...We love you all!!!

Update 3:45 PM (Monday afternoon)

Dani Jo went down for surgery at 2:30 this afternoon. They called up here about 3:15 and said surgery was going well so far. The procedure may take up to four hours. They have to keep doing biopsies until they find out how much of the intestines to take out, then do the actual procedure.

I will post more later when we find out more.

Thank you for your prayers.

Big Day Today!!

Dani Jo is still on schedule to have surgery to correct Hirschsprung's Disease after lunch today. She has been pretty angry the past two days because they stopped her feedings to make sure she had an empty stomach, etc. for the surgery.

We don't have an exact time on the surgery. We have been told after lunch today.

Please say a special prayer for her today.

Saturday Morning (December 15)

Dani Jo has done well the past several days. She has surgery for her Hirschsprung's Disease scheduled for Monday afternoon. This is the surgery she was going to have last week before she developed an infection. The IV in her hand started leaking last night, so they have an IV in her forehead right now--not the most attractive place for an IV.

The hope is that after her surgery and after a couple of days of recovery, that she could get moved into a room on the pediatric unit--a room with a bed, chairs, tv, etc. She would probably be in this room for about two weeks if she recovered well and hopefully hope after that.

She is getting chunky. She weighed 7 lbs. 6 oz. yesterday morning. She is now eating real well. She's taking about 2.5-3 oz. each feeding. She seems to have a cranky, fussy period from about 5-8 each night. (She needs to get this out of her system before she comes home.)

Again, thank you all for your continued prayers for Dani Jo and our family. We hope to be able to write about how she is doing at home very soon.

In Christ,

The Hearls

December 11 (10:30 PM)

Dani Jo has had a very good day today. She has been very alert and has fed real well. She has been off the vent for part of the day when she was awake. Her surgery scheduled for yesterday to take care of her Hirschsprung's Disease was delayed. She developed an infection in her central line IV over the weekend. She is currently on antibiotics and doing well. This will delay her surgery about two weeks, which means she will not be home for Christmas. The culture they did yesterday was negative, which means there is no more infection present in her body.

We took several pics and videos over the weekend. I'll try to post some of them this week.

We would like to thank Mrs. Dalton and her students at Statesville Christian Academy for their daily prayers for Dani Jo.

Thank you all for everything.

Joey, Amanda, Jordan, Jamie, and Dani Jo

Things are looking up!

Dr. Parsons is the "goofy white guy in the middle"! (Inside joke between us and Dr. Parsons) =)

We didn't get to go to the hospital today. Jordan had her party today and had a blast.

Dani Jo had a better day today. This is her 3rd day of antibiotics and she seems to be feeling much better. She is much more alert than she has been the past few days as you can see in the pictures.

A note to my (Dani Jo's) Aunt Jenn Jenn--I know that you have been busy with school and work, but I just wanted you to know that I miss your visits. I hope to see you very soon--I love you very much! I also want you to know how much it means to me for all the time you spend with me. I can't wait to come home and you can spoil me even more. Besides I am the princess and I will need more spoiling and attention! Hee hee! =)

It is nice to see Dr. Parsons around the NICU again, even if he's not overseeing Dani Jo.

A Long Day

Dani Jo had a long day today. She had been very sluggish and lethargic for the better part of the day today. The Drs took several blood samples, cultures, etc. to test for various types of infections. They did a test to determine if there was a high likelihood that she might have an infection. Healthy babies normally score between 1 and 2 on this test. Dani Jo scored 162. She has been sleeping all day today. Her vent settings are a bit high to help her rest better. She is on three antibiotics. They stopped her feedings today. She's back on IV fluids. We hope to get several test results back sometime tomorrow afternoon.

Amanda and I went down tonight for a few hours. Dani Jo slept the entire time. We didn't bother her too much because we know she needs to rest. Pray that all of the tests come back ok tomorrow. If she does have an infection and has to stay on antibiotics for a while, this will delay her surgery scheduled for Monday.

We hope to be able to post some positive news tomorrow.

Thank you for all your prayers.

Joey, Amanda, Jordan, Jamie, and Dani Jo

Dec 4--Jordan's Birthday

Jordan's Birthday--I know that a lot of my family and friends read this site daily or every other day. We have kind of been putting Jordan's 4th Birthday party off due to Dani Jo. We are not expecting Dani Jo to come home within the next 3 weeks at the earliest. So we are planning Jordan's 4th birthday this Saturday Dec 8th, at our home in Cana from 3-4:30. Nothing fancy--just cake and balloons. Jordan wants to build her disney DVD movie collection for her birthday and Christmas. If anyone from church sees this, please pass this information on to the congregation! We were going to do invitations, but with everything going on, I just didn't get them out, so please pass the word. We look forward to seeing you all.

We invite you all to come out and spend some time with us on her very special day. May God Bless, call if you need directions---

Dec 4

It's cuddle time!

This is as good of family portrait as we can get for now....

Jamie & Mommy top and Jordan below!

Dani Jo had an okay day. She desated some today and Joey and I went to see her tonight and she desat more as the night progressed. The Dr. ordered an xray due to her belly being very hard. Once they got the xray back, it showed she had right much air in her intestines which was causing her stomach to push up on her lungs and therefore desats were the result. Her surgery is scheduled for Monday and it can't come too soon. The ENT surgeon is also going to cut away some granulated tissue around Dani Jo's Trach site. Hopefully we will have some closure to all her bowel issues soon.

The Dr's did an xray of Dani Jo's Kidneys and saw that she has Nephrocalcinosis. This is basically renal or kidney disorder in which calcium deposits form in the renal parenchyma and result in reduced kidney function and blood in the urine---kidney stones. The Dr says that she may grow out of this.

Our family is ready to be one. Sometimes it feels like forever, but I know that there are worse than us. We are blessed to be able to one day bring her home--and some along our journey have not. I know God has a plan for Dani Jo and we are excited to see what He has in store for our family. We have grown closer as a family since the beginning of this and finally realize the true meaning of family bond. I look at my kids a little different now, I appreciate the little things a little more, I listen a little more closely (even if the story seems silly), I lay a little longer with Jordan and Jamie at night, I read that book just one more time...I give an extra hug and kiss each night. I have learned that we shouldn't take our children for granted, because you never know when the next moment could be your last. Not that God is punishing us, just that He wants us to love as He loved...So no matter what God has in store for our family, I will live each moment in itself----

Until tomorrow,
Amanda

It's Feedn' Time Again...

I JUST LOVE THIS STUFF!

TIME TO BURP!!
AHHHH! I FEEL MUCH BETTER NOW!

As of today they have "yet" to set a surgery date. She is having a lot of issues with the ventilator settings and hopefully after her surgery she will do better with her breathing. Her surgery is for her bowel disease--basically she cannot stool on her own and therefore they are giving her enemas. Her belly gets hard which therefore puts strain on her lungs causing her to "Desat" (when her Oxygen level drops). They are looking at putting her on a different part of Brenners. It is called "High Accuaty". There she would have more consistant care and less chance of infection until she undergoes surgery. (There is one negative side to this, (along with all the other nurses) she will lose her Primary Care nurse , Teresa Shaw--and we will miss her love for Dani Jo terribly! The nurses in the NICU have all been wonderful. We feel like a big family and everyone knows my name, we are not just a "medical record number" to them. We love each and everyone of them very much. We also love Dr. Parsons and I cried when I saw his face the other day. I just know that he too is a different kind of Dr. He cares for Dani Jo and you can see passion for her and her recovery in his eyes. (He is the one that iniciated the transfer to Accuity(sp?)). We just want what is best for her! Will post again later. Luv you all!

Also, she has had some issues with the Trach and so they put some Nitrice Acid on her stoma to shrink the "scar tissue" Well in the process of doing this, she was burned on her neck from the acid...they contacted several dept's; Ear Nose Throat Dept, Trach Specialists, Plastic Surgeons-----as if she don't have anything else going on. Well, that is my update--Just wanted to let you all know how she is doing. I hope the surgery happens soon--so we can bring her home for Christmas. Right now, it may not happen unless they do the surgery early this week (Mon-Tues).

Karen Peck and New River,

It was wonderful to hear you live on yesterday. You all really touched our lives. Your work for the Lord is awesome! I pray for your daily travel that God is with you all each step you trod.

Whitney, Ryan, Grandma Jane & Papa Dickie,

Just wanted to thank you from the very bottom of my heart for all you have done for me and my family. For taking care of Jordan and Jamie in this our time of financial, emotional, physical and mental needs. You have not gone unnoticed. I love each of you very much and you each hold a special place in our family!

In Christ,

Joey, Amanda, Jordan, Jamie, & Dani Jo Hearl

Dec 1

Finally More Pictures!

Happy Birthday Nanny! I was hoping to be home by now, but I guess I will have to send you a Birthday wish your way. Hope your day is great! I will see you soon! Jordan, Jamie and my mommy and daddy says Happy Birthday too!

Papa Hearl,

Thank you for letting my mommy borrow your camera--this pics for you! Maybe I will be home soon so everyone can meet the real me instead of just pics!

Papa & Grandma Pike,

Be careful traveling this weekend and I will see you soon! I luv you!

Aunt Shell,

Just wanted to say that I luv you and I can't wait until we can see each other more. Take care of yourself so we can have a healthy baby "K" so me and him can play together when I come home.

Dani Jo Update:

Today is December 1 and Dani Jo is 51 days old today. She had been doing pretty good for a while, however over the past couple of weeks she has regressed some. She doesn't seem to be making much progress. Dr. Parsons has definitely been missed over the past 2+ weeks. Just when we thought things were moving in the opposite direction, I saw Dr. Parsons back at Brenners. He wasn't really back in the NICU as one of the Dr.'s for Dani Jo, but he was concerned about Dani Jo's "regression" and said that he was going to try throw some ideas around to her attending physician. We got a call from Dr. Parsons this morning saying that he was trying to get Dani Jo moved to a different section of the 6th floor it is called "Accuity" (sp?). Anyway, Dr. Reuben would oversee her directly and get her home ventilator settings set. And this is a less risk of her catching something. She would be in a section kind of by herself. We want to let everyone know that we love you all and thank you from the very depths of our hearts all you have done.

We will keep the site posted!

In Christ,

Joey, Amanda, Jordan, Jamie, & Dani Jo

November 27 (2:45 PM)

Sorry, no pictures today. The new rechargeable batteries I bought for the camera aren't working.

Dani Jo has done well today. She did much better last night after they switched her back to the hospital vent. We met with the team of doctors this morning. I felt like we made some considerable progress in our meeting this morning. I voiced some concerns I had about the way things had been handled over the past two weeks. Some of the nurses voiced some concerns as well. We all felt well about the meeting. The doctors have contacted Dr. Ruben (pulmonologist that will manage Dani Jo's case when she goes home, CCHS expert) to get some input into the proper ventilator settings for her on the home vent. We are going to try to correct desats initially by gradually modifying her bpm settings as opposed to greatly increasing her oxygen levels. They restarted her feedings again today. She gobbled down 30 cc pretty quickly for lunch today.

A special thank you to Jake (Respiratory Therapist) for all your help with Dani Jo and for teaching us all about the ventilator and its settings.

Kudos to Karen (nurse today) for all your love for our little girl. We love the way you love on her when we are not here to do that. Karen also wins the Golden Enima Award for successfully performing this procedure and not waking Dani Jo up the entire time. (Your trophy and certificate have been ordered.)

Jennifer B., thank you for your post. You can sing Jesus Loves Me to Dani Jo anytime you want to.

So, overall, today has been a pretty good day. We are looking at surgery on the large intestine in about 1.5 to 2 weeks.

Thank you all for your prayers.
The Hearl Family

Monday Night (November 26)

The hospital called tonight about 6:00. Dani Jo had a rough afternoon. She desatted several times and was just not herself tonight. They did two cultures to check for bacteria growth. They did some bloodwork to check for infection. They tested her for RSV. As of 9:30 tonight, all of the results had been negative. An x-ray revealed that she had some collapse in her left lung, so they put her on her right side so the left lung could expand and open up a bit. They switched her from her home ventilator to the hospital ventilator she was on before the trach surgery. (Amanda and I think this is a good thing.) The home ventilator will eventually be the right thing for her, but right now I think the other vent is best. The medical staff at the hospital is more familiar with the vent she is on now. Personally, I don't think they know enough about the home vent to know how to modify the settings accordingly. We hope to speak with Dr. Ruben (pulmonologist) tomorrow in hopes of getting him to be in charge of her ventilator settings. The past several days have been frustrating at times. Several members of her medical team seem to want to get her vent breaths per minute as low as possible (almost like they are trying to wean her off the vent--however, she will never be weaned off the vent because of CCHS). When they lower the bpm, she begins to desat. They then respond by jacking up her oxygen level of the vent. At times, it has been up above 60-70% recently. This is not recommended at all since there are damaging effects of too high levels of oxygen. They have said that they want her on one bpm rate for 12 hours during the day and another rate during the night. This would be great if she only slept during the night, but she's only 1.5 months old--she sleeps all throughout the day. She has really struggled remaining consistent and stable with the home vent the past week. These episodes occurring tonight have caused them to stop her feedings again. She has an IV and will get fluids that way for now.

She did test positive for Hirschsprung's Disease last week. We hope to have the surgery to remove the portion of her large intestine soon. We had hoped for so long that she would be home by Thanksgiving. Everything looked like that might happen for a while, but as the days pass and she continues to struggle with the home vent, we prepare ourselves for a longer stay at the hospital. I would like to say that home for Christmas is a realistic possibility, but I will hold off on saying that right now.

Teresa, thank you for everything you have done for our family and for Dani Jo. We love you so much for your sincere love and desire to take care of our little girl at the hospital. You are quickly becoming a part of our family. I have come to realize over the past two months that the medical profession is no different than any other profession. There are those that choose that line of work because they love what they do and they want to make a difference in the lives of the patients and families they deal with. There are also those that choose a career just to earn a paycheck. Unfortunately, we have had to deal with this as well lately. Teresa is definitely one that fits the first description.

Dr. Parsons, we miss you, so whenever you want to come back and take care of Dani Jo again, we will be waiting. Maybe that's what Dani Jo is waiting for. She didn't want to go home without you being there with her, so hurry up and come back. :-)

Well, that's all we really know right now. I am taking tomorrow off work to meet with the doctors. I hope to get in touch with Dr. Ruben tomorrow and ask for some expertise help from him. Please keep Dani Jo in your prayers. We love all of you.

Joey, Amanda, Jordan, Jamie, and Dani Jo

Thanksgiving Day (9:45 AM)

Happy Thanksgiving to everyone out there. We are getting ready to go to the hospital in a few minutes. We got the test results from the biopsy last night. Dani Jo did test positive for Hirshsprung's Disease. Basically she has a portion of her large intestine that does not have nerve endings in it that help move the waste through her body. At some point in the near future Dani Jo will have to have surgery to remove this part of her large intestine.

The doctor I spoke with last night said that if Dani Jo were able to get her feedings up over the next several days, she may get to come home and we would bring her back in a couple of weeks for the surgery. He thought she would do better with the surgery if we waited a few weeks to do it. If we did bring her home prior to the surgery, we would give her enimas every six hours at home.

If she cant' get her feedings up to par over the next few days, he would have to go ahead and do the surgery soon. In order to do the surgery, they have to do another biopsy where they take several tissue samples until they find normal tissue. This will tell them how long the part of the intestine w/o nerve endings is. If this is a very small part, they cut it out and reconnect the end of the intestine. If this is a large part, they cut it out and she would have to have a colostomy bag for a few months until the intestine healed from the surgery.

So, right now, we don't exactly know what will happen with the surgery. We trust in God that He will protect her throughout the upcoming days and weeks. Thank you all for your prayers and support. We love you all.

PS--Travis, this pic with the App State hat is for you. Enjoy it, cause it will be replaced with a VT picture soon. This pic is a few weeks old.

Joey, Amanda, Jordan, Jamie, and Dani Jo

Nov 20 Finally Getting Somewhere!

Well, we are starting to get somewhere at least with her stooling issue. The Dr. came in this morning and finally did the repeat Hirshprungs biopsy. We should hear something by tomorrow sometime--then we can move forward.

Treatments:
If they find that it is Hirshprungs (depending on how large the section is), they would be able to just remove the section and reconnect. If it is larger than they can remove & reconnect, they wouldd do a different surgery that would result in her having a colostomy for a few months for her to get bigger for a more intense surgery.

If they find that it is not Hirshprungs, and that it is just a narrowing in her intestines, they could either do surgery and remove the "narrowing section" or they would continue with enemas and wait until she was a couple of months older and do another "barium enema" to see if the narrowing has improved.

Well that is all I know for today! Thank you all for your prayers! God is still in control!

Joey, Amanda, Jordan, Jamie, & Dani Jo Hearl