Sunshine in the Rain

Through this horrible storm, we have seen bursts of sunshine as God orchestras all the details and reminds us of His loving care. My mother asked for me to write them out because she wanted to send an email about it. I think I'm going to just list them out in bullet form.

*The ER that we took Sierra to was very good. All of the people were VERY nice and showed lots of compassion. They were caressing Sierra as they worked on her. It was a much different ER experience than we've ever had before.

*The people in the ER also allowed us to have Ruby in the room with Sierra. We only had her in there with us for a few minutes and then passed her off to her grandparents who were in the waiting room. But it was special that we had a few last minutes together as a family.

*Sierra went to be with Jesus while we were vacationing in Florida. She passed away on a Sunday morning. We were supposed to come home on Tuesday. After she left us, we felt an urgency to get home ASAP. Jason called up Jet Blue and asked if there was any way they could change our tickets. They were AMAZING! They were on the phone with Jason for an hour and the lady worked really hard. She was able to get us a nonstop flight coming home that afternoon. On top of that, she waived $1500 worth of fees.

*Since everything happened in FL, that meant that we had funeral home fees for the funeral home there, plus transportation, plus the funeral home here. We didn't have life insurance on Sierra. Some friends very kindly offered to transport her body for us to cut down on expenses. We decided it was probably best just to have the funeral homes make arrangements to fly her body back. We used a funeral home in FL that is owned by someone Jason's uncle knows. He gave us a discount. Some friends called us and said they wanted to help out. They generously paid for the expenses of the funeral home in FL as well as the transportation costs.

*Three groups of people have taken up a collection for us (church, work, online friends) and many people have sent gifts. The money will be used to pay for the headstone, get Sierra's name engraved on the memorial wall at Morgan's Wonderland, and make a memorial garden for Sierra at our land.

*Jason's parents (who were also vacationing in FL at the time) were flying in for the funeral. They were flying into Dallas. We had so much going on that it would have been difficult for us to pick them up. Jason called up a friend and asked him to pick them up. That friend was already planning on driving from Dallas to Temple that day.

*We decided to sell the hyperbaric chamber to help pay for the funeral expenses. I posted a Facebook status about it. Several of my friends reposted my status to try to help us. Within several hours, someone had bought it.

*Some dear friends put together a book with pictures of Sierra and many sweet notes. It is so beautiful!

*When we were making funeral arrangements, we stopped by a cemetery that someone said used to have free plots for children. It turned out that they no longer had free plots for children. The man there was very flippant and we didn't like him. We weren't thinking clearly at the time and probably would have went ahead with that cemetery if our pastor had not been with us. He said, "This doesn't feel right. Why don't you keep looking?" So we went home. We started talking about it and decided that we really wanted to find a little cemetery out in the country.

We had recently purchased land just outside of Troy. Our plans were to build there and get Sierra out to the country. We did a quick Google search for cemeteries in Troy. There were three listed. None of them had contact information. The funeral home didn't have any information either. Jason and our pastor began making calls to try to find contact information. About three different people gave them the name of a lady who runs the newspaper in Troy. We tried calling her, but her phone went to fax. We decided to stop by. We were greeted by a very nice lady who seemed to know everyone. (The town has a population of 1,600.) She had the contact information we needed.

Out of the three cemeteries, the one that stood out to us in name was Shiloh Cemetery. One of them was right by the highway and the other one didn't really interest us. We drove out to Shiloh Cemetery and it was just perfect. It was only about 5 miles from our land. It was a peaceful little cemetery out in the country. The last person buried there was 26 years ago.

We called the lady in charge of the cemetery. She said that we could pick out any spot we liked. There was no charge, but we could make a donation if we wanted (which we will be doing.) Oh and Shiloh means, "Gift from God," which describes Sierra perfectly.

*It was cold and rainy on the morning of the burial. The sky was overcast and dreary. We arrived at the cemetery early and were wondering if the light rain was going to turn into a downpour. Once the service began, the rain stopped. Not only did the rain stop, but about 3 times during the service, the sun broke through the clouds. It was such a beautiful sight! I liked to think of it as Sierra smiling down on us.

Two Weeks

Tomorrow it will be two weeks since our little angel left us. Oh how my heart aches. I miss her so much. :'-( Our family is incomplete without her. My days feel empty. Yes, I have a lot more free time now, but I would give up all of my free time to have her back in my arms.

Every little thing reminds me of my sweet little girl. As I walk down the baby isle to pick up diapers for Ruby, my mind says, "Do I need diapers for Sierra?" "Am I almost out of suppositories for Sierra or do I need to buy more." "I wonder if Sierra could drink out of that sippy cup." "There are some cute bows that would look good in Sierra's hair." On and on it goes. Then reality comes crashing down.

Modeling Mothering

Rosetta does most of the writing here, but I wanted to jump in to talk about mothering.

Rosetta had modeled mothering for the last several years.  Of Sierra's 3 years and 28 days of life, Rosetta spent 3 years and 27 days with her.  The one day she didn't, our other daughter Ruby was born so she was a little busy.  But its not so much about the number of days spent, its about what she did during those days.

When Sierra was in NICU, the doctors put a feeding tube in her stomach because they said she would never be able to eat normally.  Rosetta found a special kind of bottle called a Haberman that assisted kids with with sucking reflexes to learn to suck.  Within two months, the tube was out.

This does not mean that feeding Sierra was easy.  She eventually learned to suck well enough to go to a regular baby bottle and then to a sippy cup, but feedings typically took at least half an hour, many times longer.  On top of that, Sierra typically couldn't go to the bathroom on her own, so Rosetta spent significant time each day helping her make this happen.

On top of all that, there were endless therapies and appointments.  It started out with taking her to a chiropractor in Austin twice a week.  Eventually we switched to a chiropractor in Temple, but then found a good massage therapist in Austin that she started taking her to.  This involved significant drive time, not to mention the various local therapies that she took her to, or had therapists come to the house for.  Most of the time any time Rosetta got to herself was after midnight, if she got it at all!

Sierra's cues were very subtle.  Many times I wouldn't even pick up on them.  But Rosetta did, even if it was the middle of the night and she was asleep.  Rosetta was so tuned in that if anything was amiss she would wake right up and tend to Sierra.

Sierra could not have had a more caring mother who dedicated her life to her daughter and giving her every opportunity.

Continuing Her Legacy

I have decided to continue this blog. I will use it to write down memories of Sierra or share my grief as I miss my precious little girl. The entries will be very raw and real. Some of them will be happy memories and others will be filled with the pain and hurt of losing my baby.

If my SN friends do not want to continue reading my blog I completely understand! I know that when Sierra was still here it was very difficult for me to read about SN children that had passed away. During that time, I wanted to focus on her life and not think about the possibility of her leaving. Now that she is gone, I still want to primarily focus on her life.

Sierra Rose Fedelem September 19, 2007 - October 17, 2010

Sierra Rose Fedelem

September 19, 2007 - October 17, 2010

Sierra Rose Fedelem was our precious daughter.  She was not breathing at birth, almost died, and sustained significant brain damage which the doctors stated would prevent her from ever walking, talking or seeing.  We chose to not give up and tried many mainstream and alternative therapies.  She took us places we never would have gone and taught us things we never would have known.  We are grateful for the time we had with her.  She went to be with Jesus suddenly on October 17, 2010.

Everyone is welcome to attend:

Graveside service: Saturday at 11 am, Shiloh Cemetery, Troy, TX (Google Map: http://bit.ly/bjzVH7 )

Memorial Service: Sunday at 4 pm, Grace Community Church, Waco, TX (Google Map: http://bit.ly/9wHIVG )

She flew up to Heaven on the wings of angels

By the clouds and stars and passed where no one sees

And she walks with Jesus and her loved ones waiting

And I know she's smiling saying

Don't worry 'bout me

Alan Jackson, Sissy's Song

Our Precious Little Angel is with Jesus

Sierra has gone to be with Jesus.  Many people have been asking what happened. 

Sierra had been kinda sick for a week or two. She wasn't too bad so I didn't take her to the doctor. We went to Florida for a week to visit Jason's grandmother (his parents were also visiting.) On Friday night her breathing was a bit labored and she was swollen. Her breathing improved by Sat morning. Sat evening her breathing became labored again. I woke Jason up around 4am on Sunday morning and told him we should take her to the hospital. 

We looked up a Children's hospital on google and went to it. The people in ER were extremely nice. They even let Ruby in the room which was special because we got to be together as a family for the last time. They told us that her sodium levels, plateletes, and a bunch of other things were low. They said they would have to intubate her. 

I had to leave the room during intubation. While they were doing it, I saw the nurses start to hurry around. A nurse came out to get some dopamine.  I knew that wasn't good. I looked in the window and saw them doing chest compressions on her. I hugged Jason tight and started wailing hysterically. All of a sudden God enveloped me in a blanket of peace. I stopped crying and looked at Jason and said, "She's with Jesus now! She can walk, and talk, and see!" A few minutes later a nurse came out to tell us what we already knew.

It was a huge shock.  We always knew that it would happen as some time, but she left at a time when we weren't expecting it.  Overall though, we are grateful that God took her home so quickly rather than allowing her to be in the hospital for days on end.

JetBlue worked hard and got us on flights home that afternoon.  Today we worked on getting arrangements made for transporting her body back to Texas, finding a cemetery, making memorial service arrangements, etc.

The graveside service will be on Saturday October 23, 2010 at 11:00am at Shiloh Cemetery in Troy.  (From IH-35, take the 308 exit and go east for approximately 1.1 mile, turn left onto Shiloh Rd, go 1 mile and the cemetery is on the left.)

The memorial service will be on Sunday October 24, 2010 at 4:00pm at Grace Community Church in Waco, TX

Many people have been asking for our address.  It is:

410 E Lamar Ave

Temple, TX 76501

Doing well

Since I'm sitting here at the computer in the peace and quiet (the rest of the family is asleep), I decided it would be a good time to write a quick update.

Sierra has been doing really well lately. She has been so much more awake and alert. Since going to China for the stem cell treatments, we've really noticed cognitive improvements in her.

She is currently getting occupational therapy and speech therapy twice a week. They come to our home so we are not battling the germs at a therapy place. We goes the the chiropractor every other week and we have recently begun taking her to a "manual therapist" in Austin every other week.

The "manual therapist" has been helping her immensely! We were really starting to get worried about how curved her spine is. He is helping straighten it out. He does what almost looks like a massage but he says that it isn't massage because it goes deeper than tissue and manipulates the muscles and bones. To be honest, I'm not quite sure what he does (this man is so intelligent that I don't understand the majority of what he says.) But, whatever it is, it is helping! Her spine is getting much straighter and she has been more active.

Ruby is our little Energizer Bunny. She is so active and noisy. She loves Sierra and provides a lot of positive stimulation. I think having a sister has been one of the very best therapies for Sierra.

In other news, we are working on moving to the country! We purchased some land and after we sell the house, we plan to build a little at a time. I can't wait to get the girls (especially Sierra) out to the fresh air and do things like horseback riding more often. We probably won't move for a year or two just yet, but we are so excited!

Long Time No See!

Wow, it has been forever since I posted here. I can't write a long post right now since it is 1 am. =) We use Facebook more than the blog nowadays.

The winter was really long and hard for us. Sierra was sick for nearly 6 months straight. She is feeling MUCH better now!

Sierra's little sister was born three weeks early. I was induced on Dec. 23 and she was born on Christmas Eve. Her name is Ruby Violet Faith. She is a great addition to the family and has provided lots of beneficial stimulation for Sierra.

Here are some pictures of the girls.

New Sister!

It's been a while since I've updated and a lot has happened since then. In November, Sierra landed in the hospital with pneumonia and a staph infection. She was only there for 5 days and we didn't have to go to PICU. She was able to get out a few days before Thanksgiving.

This past Sunday Sierra started looking a little sick. On Monday, we took her to the doctor. He gave her a shot of Rocephin and started her on antibiotics. Today she is doing MUCH better. She is perkier and more alert. We are so grateful because tomorrow I am going to be induced, and did not know how I was going to survive if my other little girl was in the hospital.

Sierra's little sister is due Jan 15. Last week at a check-up and ultrasound they said that the amniotic fluids were low and put me on bedrest. On Monday they checked them again and said they were still at a 6. Tomorrow I go in for another ultrasound and will more than likely be induced. She will probably be born on December 24.

We would greatly appreciate everyones prayers. Please pray that Sierra would continue to improve, that God will give me strength, and that I would not have flashbacks of Sierra's birth.

P.S. I know something is wrong with the blog right now and won't allow comments to be posted. I'll try to get Jason to fix that sometime. Not sure when that will be. EDIT: Comments should now be fixed. If anyone is having issues please let us know. Most of you have alternate contact info for us. Pop up blockers need to allow popups on this site as this was the only fix I had for now.

More Progress

I'm not sure if anyone reads this blog anymore but I figured it would be good for me to update for my own benefit. It seems like sometimes progress kind of sneaks up in little areas and they can be so small that you don't realize they are there until you look to the past and realize, "Hey, she didn't used to do that!"

Lately during feedings, Sierra has put her hand up a couple of times and placed it on the bottle. She'll leave it there for a few seconds at a time. In the past, if she would ever touch the bottle it would be with her fist closed. Now she is placing her hand on the bottle with her fingers open! So I decided that maybe it is time to see if she can gradually make the transition to a sippy cup. I bought her a sippy cup that has handles on it. The plan is to eventually get her to hold on to those handles. I had to remove the valve inside that prevents the sippy cup from spilling because her suck is still too weak to get anything out with that valve on. The few times that I have given it to her, she has done pretty well. I think she is rather annoyed that it isn't the bottle, but she has been able to drink out of it. One of the times, I took the lid off for the last few sips and gave it to her that way, like a regular cup. It was a bit messy, but she did fine with it! I would tell her, "Okay here is comes, now swallow it." That would give her an idea of where the liquid was. About 6 or 7 months ago, I had tried doing this and it resulted in the drink going down the wrong way and her having a choking fit. I didn't repeat it because I was afraid of her aspirating. She has had stem cell treatments since then, and I honestly believe that they are what have helped her gain more oral motor control.

I have been very pleased with Sierra's new therapists! They have been doing a lot with her and giving me ideas of what things to do at home. Here are some of the main things we are working on:

1. Stretches: Her arms. Her arms do not straighten out all the way. We are working on stretching them so hopefully the muscles will stretch and give her better range. Her thumbs. Her thumbs are a bit tight. Not too bad, but we are working on making them better. Her ankles. Same thing, just trying to make sure they don't tighten up. Her side. She has a tendency to pull to the left. This is causing her back to curve. We stretch out her left side and curve her to the right.

2. Sitting: We've been working on having her side sit with her arms in front of her supporting her and her fingers flat on the floor rather than in a fist. She did an EXCELLENT job on Friday!

3. Crawl position: Having her on all fours with her knees under her, her hands supporting her, her fingers flat on the floor, and her head up.

4. Rolling: She does a bit of rolling on her own but she will only roll towards her left. They are working on getting her to roll both ways. Last Friday, they put her on a swing. It is basically a square board suspended from the ceiling. They had her laying on it. A therapist was on each side. They would tilt the swing and have gravity help Sierra roll. She did really well on that!

5. Mouth exercises: They have been showing me some exercises to do with Sierra that are supposed to strengthen the muscles in the mouth.

Sierra gets therapy on Tuesdays and Fridays. On Tuesdays she gets half an hour of PT, half an hour of OT, and half an hour of ST. She was supposed to have the same schedule on Fridays but the OT and PT decided that instead they would rather work together and give Sierra a more rigourous 30 minute session instead of doing them seperately. It has seemed to work out really well. Sierra did such a good job with the two therapists. They made her work hard!