More pictures of Amelia

This is a great storyboard of Amelia that Monica Carroll put together.

This is a wonderful picture of her holding her big brothers hand.

We have been getting some great photos from Monica and have finally gotten around to posting them here. Thank you for all of the prayers. We have definitely felt them and we will continue to need them. Also thanks to everyone that has decided to join us this Saturday for the race/walk to benefit the Amelia Center. We are definitely making a presence at the event in memory of our Amelia.

Update

This week has certainly had some ups and downs. Wednesday was my birthday so it definitely gave us something to focus on. Misty asked Ben what he wanted to get me and he replied some Goo Goo Car washes. It is a local place that you can buy a gift certificate to. Well they had just done that for Father's Day so she told him that was out. Recently I was installing a new drain line for a new laundry room. I had several different pieces of PVC and was connecting them all to our rain barrel outside so Misty can water the plants with our washing machine water. The entire time Ben was there with me probably causing me more trouble than help.

So back to the story when Misty asked Ben what else he simply replied "plumbing, you know Daddy likes plumbing. And let's get him a bunch of pieces!" So we went to Home Depot and I wandered around and he got to pick out 10 - 15 PVC connectors and he thought that was the greatest thing EVER. Then Misty gave me a choice of something or a Wii. I have really wanted a Wii but was hesitant because I didn't know if it would be too complicated for Ben just yet. I talked with the guy at Wal Mart for 20 minutes and we took one home with us. Well as I said earlier this has been something to focus on is really the understatement of the month. We had so much fun watching Ben playing the games! Now he is wanting to play it 24/7!

We also visited The Amelia Center this week and had a great hour with our counselor. He gave us a great analogy about this chapter in our lives. He said if you will imagine the grief and pain being a ball inside a jar. The ball will never shrink no matter how much time passes. But our goal is to make the jar bigger around the ball. In other words grow your world with experiences around the grief/pain. So the Wii definitely has helped us to start having some fun experiences together and "grow" our world around everything that has happened in the past 2 weeks.

We are also contemplating a short weekend trip for the 3 of us next month to Disney World. I think for us to experience Ben having the time of his life will do both of us wonders. Although he told me the other day "Daddy we need to go on vacation soon and we need to go to an island in the ocean." I guess we have spoiled him some already. Back in May I had a trip to San Juan and St. Maarten so Misty and Ben went with me. He has experienced a lot for a 4 year old, in fact he has had a passport since he was 2. So I hope Disney will suffice for him!!!

I can't say enough about the continued prayers and support that everyone is offering for us. We can definitely tell that God is with us as we continue to walk down this path.

The Amelia Center 5k Charity Run

The Amelia Center which has been such a fabulous resource for us over the past 2 weeks and will continue to be a dear resource to us is having a fundraiser 5k run/1 mile fun run!

We would love for everyone to join us on August 29, 2009. Misty, Ben and I are going to participate in the 1 mile fun run (well maybe it will be a walk too)! Please go to this link, http://www.ameliacenter.org/body.cfm?id=27&action=detail&ref=7, to find out more info about the event and this website, http://www.active.com/page/Event_Details.htm?event_id=1757989&assetId=3908DEF5-DEFA-4E00-AB9D-123D5FD5A4F8, to register. It is @ 8:00 am at Tannehill State Park. What an exciting way to raise money for an organization dear to us and a great way to start your Saturday morning!

We look forward to seeing everyone out there to help us remember our Amelia.

Post Doctor Visit

Misty had her post op visit today with her OB/GYN(s). We saw 2 because we feel like there are 2 doctors that have been involved in these past 2 weeks that are now very dear to our hearts. Dr. John Woods and Dr. Cynthia Lassiter have been more than Doctors to us in the last 2 weeks and made it extremely easy to come in today. They were very pleased with Misty's progress and sat down with us and chatted about the past week and what all we have been through. We gave them each a picture of Amelia and I think it really meant a lot to them that we remembered them. Dr. Lassiter is a real encouragement to Misty considering she had 3 kids after the age of 35 and never once did an amniocentesis! Not that we are even considering what our next steps are but I think Misty felt a reassurance to hear her say that. She also reminded us that she was so proud of us for making the choices for Amelia that we made last week. She strongly believes that it is best to bring the baby into the world and allow God to work his plan for the baby.

We also stopped by the Birthing Suites floor and handed out some pictures of Amelia to our nurses from last week. We also donated some more clothes to the NIC unit for babies born unexpectedly. They were so thankful for the clothes.

We also scheduled an appointment with The Amelia Center this afternoon. Our counselor there is a God send for us right now. I know I have praised them in a lot of our posts but I can't stop talking about what a great resource they are for us. After meeting with them we had a good understanding where we are and where we need to be. He gave Misty some very practical info for returning to work when she is ready.

I want to thank everyone again for their prayers and support. The food has been PHENOMENAL!!! You know that is very important to Ben and I!

Picture of Amelia

This is one of the incredible photos that our new dear friend Monica Carroll took for us as part of an organization named Now I Lay Me Down to Sleep. This is a national organization that professional photographers join and when called upon come to assist a family in need. I can't say enough about how wonderful it was to have Monica Carroll there with us. She took over 560 photos in the short 4 hours! You can also view her website at http://www.monicacarroll.com/. We really appreciate her and her work more than words can describe.

Amelia's Memorial Service 8-15-09

As Misty and I talked about what we wanted to do for Amelia we had decided on a small family only service there at the Cemetery where her mother is buried. The cemetery was absolute perfect and there is even a walnut tree covering the little area where Amelia's spot is. We have had many friends help us along the way but one that has done more than we will ever be able to repay him is Heath Bowen. He is the manager of a funeral home here in Birmingham and actually grew up with Misty. God placed his name on our minds on Tuesday for a reason. It was so much easier to walk in there Thursday knowing that he was a friend and that he knew what we had been through. Heath took care of us in ALL of the arrangements and that is exactly what Misty and I needed. He even gave Ben a little bear this morning and told us that he had placed an identical one in Amelia's casket. Ben had a teddy bear with us for the ride up there today and now he is calling his bear big brother bear and the new smaller one little brother bear.

So we asked Ronnie McCarty who is a dear friend to Misty and does a lot of preaching in his spare time to say a few words that God needed us to hear one more time. Ronnie did a fabulous job reminding us that all good and perfect things come from God. Ronnie is truly a man of God and said exactly what God had laid on his heart and nothing more. I appreciated that since it was 95 degrees out there and I was getting hot quickly! We then following the suggestion of the Amelia Center and allowed Ben to release some pink balloons to Heaven for Amelia. He thought that was the best thing he had ever done. He watched them until you could not see them anymore. In fact some of the adults were upset that they didn't get to release some too. This will be a yearly event for our family as go back and release some balloons on Amelia's birthday. After this we all had a good Southern meal at the church where Misty's sister attends. This was a good time to fellowship with family and explain further details of our journey in the last 2 weeks. Now we are back home and Ben is making all of his stuffed animals watch the Weather Channel! Thank God we have him to make us snap back into reality!!!

Even though Amelia was only with is for 3 hours 42 minutes on this earth she has a left a legacy much longer and bigger than that. Misty and I have already started planning some things in the next few weeks to help remember her. We will post some of the details soon.

As I close each of these posts I thank everyone for their prayers and support! That is what we need more than anything. So thanks once again for your continued prayers!!!

Memorial Service for Amelia

It has been a long night and morning as we prepare for a Memorial time for Amelia. We are going to have a small private service for her for our immediate family at the graveside. Misty and I both looked at each other yesterday and asked each other "how in the world do we involve Ben in this service." So I prayed about it and then once again God led me to the Amelia Center. I called and God allowed our friend there to be available to take my phone call and give me another crash course on the next chapter that we are facing. So he gave me some excellent counseling to involve Ben in this service. Imagine a 4 year old wanting to know why we are all gathered and crying over a box that we are about to put in the ground when he knows already that she is in Heaven. So our friend at the Center suggested we involve him by letting him release some pink balloons to Heaven to her. What a God send of a recommendation. So please know that we can feel every one's prayers during this time but are asking for some quiet family time tomorrow as we memorialize her.

A lot of people have been asking about sending flowers for the service. We appreciate the offer but ask in lieu of flowers please send any memorials to the Amelia Center in Memory and Honor of Amelia Nell Hillis. The web address is http://www.ameliacenter.org/ where you can find the information to make any memorials. The mailing address is 1513 Fourth Avenue South, Birmingham, Alabama 35233.

THANKS so much for the continued prayer and support as we go through this weekend. These next few days/months are going to be tough but knowing that we have so many people praying for us has made this walk easier.

We are Home.

Misty got discharged around noon and we went home. The hardest thing was to leave the hospital for me because I guess I felt like we were so safe down in our little secluded corner of the building. We didn't have to explain to anyone why we might be crying or why we might need some space. We had read last week to donate any preemie clothes that you might have left to the NICU. Typically these families show up in an emergency and are not prepared in the least bit for delivering early. So we did just that with the clothes we had bought now knowing if we would even be able to use them. The nurses took them over to the NICU unit and everyone was so excited because there was little girl that was just born and the parents had NOTHING! What a feeling to know that Amelia is already looking over a newborn premature little girl and sharing her clothes with her. I will post more tonight about our plans and wishes for ways for everyone to Honor Amelia if they choose to. I am standing in the gorcery store waiting on Misty's prescriptions crying like crazy as I write this. I think it might be best!

Thanks once again for your prayers! We are so BLESSED to be surrounded by so many wonderful people!

New Day

It is a new day Thank God! We so appreciate all of the prayers and support through this time! Misty rested well last night and is up and moving as much as she can. We have so many things to decide now concerning Amelia's burial. But it is a lot easier to handle these things knowing God is with us in this room right now holding our hand as we discuss everything. This is definitely not something you want to ever want to have to deal with but knowing that she more than deserves the best is also making it a little easier to handle. I know God was with me 100% yesterday because if not I would have passed out when the RN pulled me aside and asked me if we had made any funeral plans yet. I knew we only had a little time at that point and we prayed that God take her when it was time and to not let her suffer! That is exactly what he did!

Thanks once again for your prayers and support!

Misty, Ben and Robbie

Amelia is in Heaven

After 3 of the most sweet hours of my life our baby girl took her last breath and asscended into Heaven where a host of Angels welcomed her! Please pray now that Misty, Ben and I can have peace in knowing that she is going to be waiting on us one day! She was so perfect on the outside but her little brain just forgot to keep telling her lungs to breath. We found out the diagnosis on August 3, 2009 and sent her to Heaven on August 11, 2009 @ 3:50 pm.

Thanks for the continued prayer support for our family!

3:00 pm

Amelia is still breathing and hanging in there. She has stopped breathing several times but so far God has allowed her to spend a little time with us! She is so peaceful and angleic! She is definitely at peace right now and Misty and I have prayed that God take her when she needs to go. We have baptized her and have made sure she is dressed in the prettiest outfit that some hospital volunteers have made. Her breathing is slowing down and she is stopping breathing more often now! Our pray is now that God allow her to go as peaceful as possible!

She is here!

Amelia Nell Hillis entered this world about 30 minutes ago! She is perfect looking! She weighed 4 lbs 1 oz. Dr. Goldsmith, our peditrician, said that the outlook is not good. She stopped breathing while she was being examined. She said that we may only have her for a few hours today! PRAY we all get to spend the time with her we deserve! Misty is doing great!

Thanks!

August 11, 2009

We just learned 8 short days ago that our baby has Trisomy 18. It has been a very long 8 days of understanding and questioning of course. We are going to the Hospital @ 9:45 this morning and are prepared to be greeted by a fabulous team and medical staff. The outpouring of prayers and support remind us that we are not alone in this trip. I have received hundreds of e-mails from people all over the country telling us that they will be praying for us and our baby during the procedure this morning. This has certainly reminded us that God is good and that prayer will help us through this situation when nothing else will.

I will try and update this as we go this evening. Thanks once again everyone for your support and prayers.

A conversation with Ben

I sat down with Ben on Friday to discuss what is going on with Amelia. He had mentioned something about her so I figured it was as good a time as any. We had checked out a book at the Library about hearts and the Circulatory system so that helped to explain what a normal heart looks like. Then I showed him our brochure from the American Heart Association and what Amelia's heart looks like. He completely understood that she does not have a line in the middle of her heart. I then explained that we are going to have 4 - 5 Doctors try and fix her heart but their is a great chance they will not even be able to. So I told him at that point we may have to let her go up to Heaven because God is the only one that can fix her Heart but if we let her go then she can not come back. We also had a chance to discuss that Mama Nell, Misty's mother who passed away already, would be there to take care of her. He really thought that Mama Nell taking care of her if she did go to Heaven would be a good idea. Misty has done an outstanding job over the last couple of years making sure he knows who her Mother is and how she is already in Heaven. He also thinks that our 2 cats are going to be up there to help as well.

He then explained the entire story to Misty 30 minutes later and had a great grasp of what God helped me explain to him. What a blessing that God laid the right words on my heart and mind at the right time. In fact I had just prayed 15 minutes earlier to help me have the right words to explain everything to him and I was still not ready. But right when the moment was there God walked me and Ben through that conversation.

Ben and I also went and did some shopping for Amelia. He of course loved everything in the entire store and wanted me to buy her one of everything. We did walk out with several things and have already washed them and packed them for Tuesday. Ben picked out her first blanket and insists that she is going to love it so much.

Now our focus this Sunday is to make sure we have all of our directives agreed upon between the 2 of us. I would have never ever thought about a birthing plan but it is very important to make sure the medical staff is all on the same page as Misty and I. We are wanting to make sure we spend as much time as possible with Amelia once she is born and stable. These are not easy things to discuss but I know once we have we will be much better off on Tuesday. I am also very thankful that God is in control of all of this. I also feel a sense of peace knowing that He will equip us with the wisdom and strength to handle what is exactly in front of us.

We also stumbled into another amazing resource. Well I should say that God put us in touch with this fabulous lady. Through a mutual friend we have lined up a professional photographer that will come and take as many photos as she can and we wish for free. She is part of a national organization that does this for families in these type situations. She also provides us with a CD and will allow us to copy the photos as much as we want. What a blessing to know that we will have a professional there helping to capture as many photos as we can. These may be the only professional photos we have of Amelia so I am truly thankful to her. Her name is Monica Carroll and her website is www.monicacarroll.com.

The Amelia Center

Misty and I spent about an hour at the Amelia Center this morning. Ironically this place has the same name as our daughter. What an amazing resource for people that are going through the grieving process of children and/or siblings. They gave us a great list of books for us to check out for Ben so we can get started tonight explaining to him that his new baby sister is more than likely not going to live very long. So that process will start sometime tonight or tomorrow. We also thought it would be a good idea to get a book on how the heart works so he can understand this part of Amelia's life. Who knows this may inspire him to be a heart surgeon when he grows up.

We also have to go buy some clothes for this little girl. Of course we don't know how much or what all we need. We are just going to buy several things and then if God takes her away from us quickly then we can always donate the clothes to the NICU unit @ St. Vincent's Hospital. We can now relax some over the weekend and try and allow Ben to have a normal a time as possible. In fact we have to go buy his school supplies this weekend for his new 4 year old class that starts Monday. So that will be a lot of fun for him.

Thank you everyone for your continued prayers and support. We are now just waiting until Tuesday.

Amelia's Story

I will start from the beginning since some of you have not been apprised of our situation. We were told last week that our baby @ 35 weeks had a major heart defect and was @ the 10th percentile for gestational weight. So we were told to prepare for Down Syndrome. This was something that Misty and I were not ready for but over the weekend had bought a book and had started researching all of the wonderful help/options there are in Birmingham to help raise a child with Down Syndrome. Then we got the results back from our Amniocentesis and we learned of Trisomy 18 for the first time. We were informed Monday evening that our baby has Trisomy 18 which is a very lethal mutation of the chromosomes. 90% of all babies born do not live to their first birthday. Everyone involved truly believes that if our baby makes it to full term that she will not make it out of the hospital. By the way we were not going to find out the sex until all of this happened. But I remember Misty saying last Friday during all of our sudden Doctor appointments that she did not want any more surprises.

We are scheduled for a C-Section August 11, 2009. The OBGYN agreed with Misty and I that the best thing to do is go ahead and deliver the baby. No one can tell us how long the baby will live of course so we will be able to understand that more fully next Tuesday. There is a great chance that her little brain will not be developed enough to even tell her lungs to take a breath. The biggest thing we are finishing up now is the directives that we have to have in place when we walk in St. Vincent’s next Tuesday morning. Our pediatrician has surprisingly been a great resource here in the 11th hour to make sure our wishes for our daughter are carried out once she is born. We have an incredible team assembled and there will be 5 – 6 Doctors in the room during the C-Section.

The greatest hurdle in our minds right now is how to help Ben, our 4 year old boy, deal with all of this. Just this morning he woke up telling us what all we are going to do with the baby once she is born. The biggest thing I would like to get accomplished now is to meet with some Counselors at the Amelia Center. This is a fabulous resource @ Children’s Hospital. The Director founded the organization when his daughter passed away at a young age and his family realized that there was no where to turn to help young siblings grieve. They have agreed to help Misty and I with a “crash course” of how to prepare Ben to deal with this. That is our greatest prayer right now is how to involve him especially if the baby lives to come home. Which is also a possibility albeit a very small chance.

Please continue to pray for us as we face some very difficult times ahead.

Robbie and Misty Hillis