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

Nov 19 Bonding With Mommy

Since Daddy has gone back to work, Mommy and Dani Jo has has a lot of time to bond. Today was a pretty good day. She was off the vent most of the time today. She is still just on 15cc of milk and the rest of nutrients through IV. They are also still giving her enemas every 6 hours. They were suppose to do a repeat biopsy today for Hirshprungs Disease, and the Dr. did not get to it. They said we are suppose to have it done first thing in the morning.....We shall see!

Mommy also stays back pretty much all day with Dani Jo from the time she gets there until the time she leaves...only going down for lunch for about 45 minutes. Dani Jo was awake most of the day today--so Mommy was able to hold her right much! We hope to find out more about "HD" Biopsy tomorrow afternoon. Check back for an updated post tomorrow night!

11-19-07 GO HOKIES!

After VT's win, Dani Jo decided she needed to show her support for the VT Hokies! I'm Daddy's little girl for sure!!!!

November 17 (1:30 AM)

Having trouble sleeping tonight, so I decided to write and give all of you an update. After a while, it gets lonely at night without the entire family home. Hopefully writing a little bit will make me feel better. I didn't get to go to the hospital today--I think that's part of the reason I'm bummed out tonight.

Dani Jo has been doing pretty good with her breathing the past few days. The problem now is with her small intestine. She's not having regular bowel movements. It seems like we've been going through the same cycle the past two weeks. They feed her with the bottle for about two days. She doesn't have a bowel movement, her stomach becomes hard and swollen, they stop feedings, give her an enima, she poops and then we start the whole cycle over again.

They thought it was Hirshsprung's Disease originally (when a part of your intestines doesn't have nerve endings to push the waste through the bowels. They did a biopsy to test for this about 2 weeks ago. Results were inconclusive. They did a contrast enima a few days ago. They discovered a portion of her small intestine that is very narrow. This is called a stricture. They say they can do surgery to widen this part. Today the doctor came up and said they wanted to do another biopsy on the narrow part to see if it is HD or a stricture or both. Amanda and I have become frustrated over the past few days. Nobody wants their child to have a surgery, but this feeding/not feeding cycle is becoming frustrating. If she needs surgery, then I wish they would hurry up and do it. We feel like we are going in circles. The bowel problem is the only thing keeping her from coming home. They had told us that she might come home on Monday. That's not going to happen.

If they do the biopsy on Monday, it will probably be Wed. or Thurs. before we hear anything about it. If we do surgery, it will probably take a few days to get that done, and then there would be recovery from surgery. Who knows? All I know is that we want our little girl home. We got a new lead doctor two days ago. It seems like we are back at step one with the new doctor. All we ever hear is "the doctor is coming up tomorrow to take a look at her", but tomorrow never seems to come. Sometimes I feel like Dani Jo is just another patient to some of the doctors and that it's no big deal to them if the doctor doesn't get it done today. They always say, "well, the doctor couldn't make it up today, but they are coming tomorrow." I know it's just another day to some people, but to us it is another lonely day without our daughter at home. To Jordan and Jamie, it's another day without Mommy and Daddy at home. It gets frustrating after several of these days.

All of the medical equipment and supplies is at the house. We got a call from my insurance company today and they have approved 12 hours of at home nursing for Dani Jo. That whole thing has been another area of stress. There are different programs out there to help with medical care and assistance for her, but it seems like you have to be denied from 800 different things to be eligible for other things. We applied for Medicaid knowing we would get denied, but we have this denial to apply for other things. We tried to apply for SSI, but she doesn't have her social security card back yet. Taking care of Dani Jo will be a piece of cake compared to all of the legal, insurance, etc. paperwork we have to battle with.

I miss my baby girl. I miss my family being together. I want this empty spot in my heart to go away. I want to stop crying when I lie down at night. Please pray that we will all be together soon. Thanks for listening tonight.

Joey

November 13 (9:00 PM)

Sorry we haven't posted in a few days. They switched Dani Jo over to the ventilator she will use when she comes home. She struggled a little bit to start with getting used to it. It's different from the ventilator she had been on since she was born. It will take a few days to get the settings all figured out.

She has had a distented (swollen and hard) stomach for the past few days. The pathologist is probably going to do another suction biopsy to test again for Hirshsprung's Disease. It's looking more and more like she does have HD considering the difficulty she has has stooling recently. We are praying that she won't have to have surgery on her small intestine and that it can be controlled with a stool softener.

They stopped her feedings today because of the swollen stomach. We didn't get to go to the hospital today. We had to stay home to meet the guys that brought all of the home health care equipment. Dani Jo's bedroom now looks like a hospital room with all of the supplies and equipment. She has a ventilator, suction pump, oxygen sensor and monitor, apnea monitor, oxygen machine, several oxygen tanks, batteries for everything, backup batteries, and about 20 boxes of medical supplies. This will get us through the first month. We will be taking up donations to put an addition onto her bedroom soon. :-)

I had to go back to work this week. I plan to take 2-3 weeks off when she does come home--hopefully, sometime next week, depends on the HD results. Thank you to everyone at CGMS for donating days to me this morning. You all are all very special to me.

I'll post some pics from Sunday and Monday, along with a video or two.

Please pray that Dani Jo's HD test results will come back ok.

Jordan Loving on Dani Jo

Saturday, November 10 (6:30 PM)

Dani Jo had another good day at the hospital. She slept most of the time we were there. Her stomach is distented (swollen) a little bit. They noticed some abnormal results from the biopsy they did to check for Hirshsprung's Disease (bowel disorder) last week. We will learn more when we talk to the pathologist on Monday. If she does have HD, they think it's probably a mild case because she has been stooling a lot.

Daddy got to hold her for about two hours this afternoon. Jordan got some time with her little sister today as well. Amanda and I are still practicing cleaning the trach. We're getting there.

We took a lot of pics and videos today.

Enjoy the video of Dani Jo breathing without the vent for 30 minutes tonight.

Breathing without the Vent

We got home from hospital a few minutes ago. Dani Jo had a great evening while we were there. She was awake for a long time. We began to clean around her trach about 5:30 this afternoon. While cleaning around the trach, Dani Jo popped the ventilator hose off of the trach. She was awake, so we decided to leave the hose off while we cleaned the trach. It's much easier to clean with the vent. hose off. It took us about ten minutes to clean the trach. She was breathing on her own the entire time. We asked the nurse if we could keep the hose off for a few minutes. Twenty minutes later, Dani Jo was still breathing on her own and keeping her oxygen levels up. We didn't want to push our luck today, so we hooked her back up after 30 minutes and went home happy tonight.

Friday, November 9

Dani Jo has done terrific today! When I came in this morning, she had pulled her feeding tube out and was just as alert as she could be. She was breathing all on her own, which is a good thing! This would mean a step closer to being taken off the ventilator during the day or while awake and just put on the vent while sleeping! Dr. Parsons may do a trial run with her before discharge just to see how she tolerates off the vent while awake! We will pray without ceasing!

Because she had pulled her feeding tube out the Dr. said that we could try bottle feeding her a little. I bottle fed her 10cc and she did really well. She wanted more. "Baby steps"! We are getting everything setup at home for her to come home. She will have to have 24/7 extensive in-home nursing care for the first few months. Monday is a big day for her. She will be placed on her "home" ventilating system for a week or so here at Brenners to make sure her settings are ready for home care. She will also have her first Trach change on Monday and she will be one month old. Please remember us in your prayers. They are setting a tentative date for 2 weeks for her Homecoming. We are very excited however, very nervous. Our lives will be different with round the clock in-home nursing, so remember us as we journey our new lives.

A big thank you to everyone that has kept us in your prayers. When we come home we continue posting on this site to keep you all updated at home, since we really can't have visitors in the beginning.

Our love to all and thanks again for the prayers, emails, phone calls, monetary gifts, baby gifts & thoughts. We are basking in God Glory for our new miracle!!!

In Christ,
Joey, Amanda, Jordan, Jamie, Dani Jo

Video of Dani Jo (November 7)

This is a short video of Dani Jo doing what she does best--sleep.

Our First Time Cleaning the Trach (November 7--4:00 PM)

We got our first experience cleaning the trach this afternoon. I guess we did ok. Lori (nurse) said we did a good job. We've still got a ways to come before we go home, but at least we are getting started.

Dani Jo has done very well since the surgery on Monday. Her sats (oxygen levels) have been great. She looks really good. She is still sleeping a lot because of the pain medication she's on. We did see her open her eyes for a few moments this afternoon.

I have posted a few pics of Amanda and I cleaning the trach. I've also posted a short video of her sleeping today.

We got a surprise visit by Cole's grandparents this afternoon. (The grandparents of the little boy with CCHS). Cole's family has been a great source of inspiration for Amanda and I. We can hardly wait to meet Cole tomorrow morning.

They did a biopsy on Dani Jo this morning. 20% of all CCHS kids have a bowel disorder called Hirshsprung's Disease. They don't think Dani Jo has been because she has been stooling so well, but they just want to rule this out. Results of this test will probably take a week or two.

That's it for now. We'll try to write more later.
We love all of you,
Joey, Amanda, Jordan, Jamie, and Dani Jo

Tuesday Night 8:00 PM (November 6)

Dani Jo did great at the hospital today. She's still out of it from the medication and from the surgery. She opened her eyes for about 10 seconds today while we were there. No desats today!! Praise God! We left hospital early today to take Jordan to the movies in Mt. Airy. Sorry we missed you, Darlene & Tami--I did hear that you guys got to see her anyway.

A special thank you to our wonderful nurse last night (Teresa). She is Dani Jo's primary nurse and has been absolutely wonderful. (see pic).

We met with Crystal (nurse/mother of CCHS child) today. We talked for about an hour. We get to meet her 23-month old son on Thursday. We are planning a visit to her house within the next two weeks to see how this all works at home.

I'll try to post some more pics tomorrow.

Joey

A BIG THANK YOU---11-05-07

This is just a BIG thank you to everyone at Brenners Children's Hospital NICU for everything that you did to comfort our family today in our great time of need. To Dr Parsons, Dr. Rubin, Dr. Patel, Dr. Kirse (and I know I am leaving some out)--but all the Doctors; Surgeons, Nurses, Medical Students, Friends, Family--Prayers--monetary--thoughts--gifts--food--(there is no way that I could possibly send a thank you to all that have sent any of the above). I hope that each of you will accept this as a thank you from the very bottom of our hearts with most warmth--Because of you Dani Jo will be strong, God will give us strength and make our family stronger than we have ever been before. This will be a life changing experience for our family and I know with your support and prayers we will conquer!


Most of all thank you to the mother of another CCHS, our true Angel in disguise. I know that it wasn't by chance that it just so happened that her son has CCHS, nor was it by chance that she worked in the Peds OR, not was it by chance that she would be by Dani Jo's side during her surgery; the same surgery that her son underwent close to 2 years ago. This was not coincidence at all. Coincidence is when God works anonymously!!!!! Thank you so much Crystal. As we embraced before Dani Jo went down for surgery, there was an overwhelming feeling of peace come over me and I knew no one would ever know my pain the way you would. I have a special love in my heart for you and your family and thank God for sending you our way!!!!!


Thanks to all, In Christ,
Joey, Amanda, Jordan, Jamie, Dani Jo Hearl

Video (3:30 PM)

Back from Surgery (3:30 PM)

Dani Jo returned from surgery about 20 minutes ago. She is doing well. We finally got to see her beautiful face without tape all over it. Dr. Kirsh said the surgery went wonderful. See video and pic.

Thank you for your prayers. Thank you Jesus for protecting our little angel.

2:30 PM--Just left for surgery

The anesthesia team just came up about 15 minutes ago and took Dani Jo down for her surgery. Surgery is expected to last only 15-20 minutes by the time they get her down there. We had a very tearful introduction to Crystal Rouse--the pediatric OR nurse that has a son with CCHS. (see picture) She was with the anestesia team that came and took Dani Jo to surgery.

I'll try to write more when she gets back from surgery. Thank you for your prayers. God is good.

Monday 12:00 Noon (November 5)

Dani Jo had a great night last night--no desats. None today so far. She is still out of it with the medication. Trach surgery is scheduled for 2:00 this afternoon. Surgery lasts only about 15 minutes. Please keep her in your prayers this afternoon.