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