Thursday, January 29, 2009


Today was another relatively good day in that nothing negative has happened. Sierra is still on the oscillator ventilator and according to the doctors is still not stable. They still are blaming it on a virus although there also seems to be a bacterial infection. This has been a scary trip and I'm grateful for the respite. Hopefully in a few days they'll be able to get her back on a normal ventilator and off the oscillator ventilator.

I'm also grateful for all the support everyone has been giving us in the form of text messages, blog comments, calls and visits. My mom came in from California last night and is helping us with administrative stuff.

Thanks for all the prayers and support!

Jason Fedelem

Wednesday, January 28, 2009

Best day so far.

Today was the best day Sierra has had so far. She didn't give us any scares.

They did find a bacteria in her lungs so they put her on another antibiotic to fight it off. They are beginning to very slowly wean her off of the ventilator. They will have to wean her off of the one ventilator, put her on the other ventilator and then wean her off of it as well.

We must have broken a record for the number of visitors we had today. We had about ten visitors not counting family! We enjoyed being able to visit with everyone.

My mother-in-law arrived today so that is a huge blessing! She will be able to help with holding down the fort at home and once Sierra is more stable she can stay with Sierra while I get out for a few hours every once in a while.

A Little Bit Better

We had a quiet night last night which meant that I got some much needed sleep.

This morning the doctor said that he liked the way things were looking. He warned us though that the next couple of days will have there ups and downs.

The way he explained it was like a pilot flying a plane. If the plane's nose was too high in the air and the pilot tried to correct it but ended up overcorrecting then the nose would be too low. It is all a matter of figuring out exactly what needs to be done in order to get the plane to fly level.

Tuesday, January 27, 2009

Another Day

Sierra is still in very critical condition. She is very touchy right now because of all the medications and things they have her on. They were moving her and her heart stopped for a second. It was terrifying.

Monday, January 26, 2009

Renewed Strength & Blessings

"He gives strength to the weary, and to him who lacks might He increases power...those who wait for the Lord will gain new strength" Isaiah 40:31

I was getting mentally, emotionally, and physically exhausted. This afternoon God gave me renewed energy and an overwhelming sense of peace. I can feel all of your prayers. Thank you for lifting us up before the Lord.

"When the darkness closes in Lord still I will say, 'Blessed be the name of the Lord!'"

Today was one of the most difficult days so far. Right now Sierra is still very critical, but amist the storm there is peace.

Something I have been thinking a lot about lately is how great God's sacrifice was to let His Son go through so much suffering. I have a much better understanding what He went through. It is so comforting that He knows the pain and anguish that we are going through.

I have also been thinking about all the wonderful blessings God has poured out on us. I am going to list just a few.

1. We still have our precious daughter and she had 14 months of excellent health (amazing for a brain injured child!)

2. We are surrounded by the love, prayers, and support of brothers and sisters in Christ (Facebook, Crossings, Grace Waco, KBC, homeschool group, and many people who don't even know us)

3. We have had wonderful doctors and nurses

4. We took Sierra to the doctor as soon as we knew she was sick rather than waiting a while to see if she got better.

5. We have an excellent hospital that people from all over the state and nation come to and it is only 10 minutes from home.

6. We are in a nice big room that has a bathroom and bed.

7. Jason and I both fit on the twin sized bed in our room :-)

8. My parents and siblings are close by.

9. My MIL is flying out to help us during this time. (YAY!)

10. Jason's boss let him take FMLA through Jan 31st.

There are many, many more but I will stop for now. :-)

Thank you all for your prayers. God is bathing us in His grace and giving us enough strength to face one day at a time.

New Ventilator

They have to put her on the other ventilator afterall.

Letter from Sierra's Uncle

Dear Ya'll,
she would look at me with blue eyes that don't see. she reaches and holds onto my finger for dear life. She would fuss and then if I waltzed around the room she would relax and calm down. she hates having hick-ups, she is my neise! she's 14months old, but I love her!!

She has been sedated and placed on a ventilator, her parents can only stand by in the ICU and worry at the sudden drops in her heart rate.... the continual strain of Drs and nurses rushing in and out... not knowing, kind of like being the star in a night mere you never wnated to be in and that you can't wake up from.

That is what I can only think of I'm in South coralina . life seems to have passed someone the short case, I don't know how to put it but it hurts. I'm powerless (not the first time) I can only recall the last time I saw her. I bent close to car seat and wispered take care I love you Sierra. I doubt she knew what I said but I knew. I am remembering and praying that as her life once again hangs in the balance of God's love and His hands. I can't tell you why it is all happening but who cares anyway?

May the Lord Continue to shine on you,

Your Prayers Are Being Heard--Keep Praying!

Well she is still far from being stable but she is much better than an hour ago. They are holding off just a little bit on putting her on the other ventilator. They want to see if she continues to improve. The doctor said that the next few days will be like a rollercoaster.

God has given me an incredible peace. We know that she is in His hands and that is the BEST place for her! He will be glorified. He has great plans for this precious little one.

New Ventilator

She is getting put on the new ventilator. Please pray that God's will be done and that He will be glorified. Also pray that He will strengthen us.

Not Going Well

Things are not going well at all. Sierra's circulation isn't doing well. They are going to give her medicine to make the heart pump stronger to help increase the circulation. This is probably a result of her being put on the vetilator.

Her blood gases are also very high. Pray that they will go down. If they do not go down she will need to be put on a different ventilator.

Pneumonia & Ventilator

Apparently Sierra has pneumonia in addition to the viral infection. Her lungs are pretty congested. The bipap machine that they had her on was not effective enough. This morning she had some serious drops in her vital statistics. It gave us quite a scare. They got her stabalized again but have decided that it is time to put her on a ventilator.

The doctor is also going to check her heart as well.

Please be praying that the pneumonia would clear up soon and that her breathing would improve. Also pray that God would give us all strength.


Sierra' stats started dropping dramatically. PLEASE PRAY FOR HER!!!!!!

Sunday, January 25, 2009


One of the biggest prayer requests right now is that Sierra's breathing would settle down. She is breathing really fast. Since she is breahthing so fast she can't have a bottle because she might aspirate the milk and get it into her lungs causing pneumonia. They just put a tube down her nose so that she can start getting milk that way. Once her breathing slows down, she will be able to have a bottle.

The doctors are saying they think she has a viral infection and that it will just have to run its course.

Saturday, January 24, 2009

Today's Update

Well not much has happened since the last update. Sierra has not been put on a ventilator yet so that is a huge praise. We are praying that she won't need it.

She was miserable today. :-( It is hard to see her like that. They stopped giving her one of the strong antibiotics that they were giving her because meningitis has been ruled out.

She is still on the oxygen mask and her breathing is labored. She is on 60% oxygen right now. They are trying to lower it gradually. She has to be able to handle it at 30% and be breathing easier before they can think about taking it off.

They think she might have a viral infection.

She got a blood transfusion today because her blood count was rather low.

We have an AMAZING night nurse! I wish we could clone her. :-) She came in the room and started talking to and caressing Sierra. She said to the resident on staff, "Can we give her some pain medication? She is hurting." (We have been asking that question since yesterday) At first he said no, because he thought she was talking about a sedative. She asked for Tylenol and he said that was fine. THANK YOU!!! Now my poor baby has some relief!!! Next, she changed the bedding (which she discovered was wet because the heating blanket under her had leaked), gave Sierra a sponge bath, put Lavender lotion on her, and put a little dress on her. As I type this, Sierra is sleeping peacefully and her stats are good. What a difference some pain relief and loving care makes!

I will be able to sleep tonight knowing that Sierra is in such good hands.

The prayer requests are pretty much the same as last night. Thanks for your prayers, calls, visits, etc. We are so blessed to be surrounded by the love and support of so many people!

Friday, January 23, 2009

Prayer Request Summary List

We are sitting here in PICU. At the moment things are okay, but we have learned that things can change quickly. Here is a list of some specific requests.

1. Right now they just have an oxygen mask on her. They are hoping that this will help here and that they will not have to put her on a ventilator. Please pray that tonight goes well and that her stats stay good so that they will not have to ventilate her.

2. Pray that her liver would start working properly.

3. Pray that Sierra (and parents) would get some peaceful and restful sleep.

4. Pray that God would be glorified through all of this.

PICU Friday

On Thursday they gave her lots of fluids because she was really dehydrated. That perked her up a bit but then she started getting really fussy.

On Friday her lungs started having some problems. It is possible that she aspirated and has the beginnings of pneumonia or they could have given her too much fluid and that could be affecting the lungs.

They put her in PICU so that she could have more oxygen. Please pray that she won't need to be put on a vent. Also keep praying for her liver. Thank you for your prayers.

Admitted Thursday

We took her to the ER on Thursday and she was admitted to the hospital. They did the spinal tap and ruled out meningitis.

The lab results for her liver were abnormal. They have given her plasma. We are praying that the liver will start doing what it needs to do.

Sick on Wednesday

On Wednesday, I noticed that Sierra was not herself. She was just sleeping and would not eat. I took her to the doctor and he thought she might just have an ear infection. He gave her a shot of antibiotics.

The next day she still was not doing well. We took her back to the doctor. He had an xray done and checked her urine for a bladder infection (which she did not have). He was worried about meningitis and recommended that we go to the hospital.

Thursday, January 22, 2009

Please Pray for Sierra!

Please be praying for Sierra. She is pretty sick right now. Yesterday she was sleeping all day and didn't want her bottle. We took her to the doctor. He said that it is possible that she had an ear infection. She got a shot of antibiotics. He said to make sure that she gets enough liquids and is wetting her diaper. If she stops doing that, then she will need to go to the hospital. She has another doctor's appointment this afternoon and will get another shot of antibiotics.

Please pray for her!

Friday, January 2, 2009

Family Fun and New Therapy Toys

Sierra had fun this week. Her Grandpa and Grandma Fedelem came to visit for a week. She enjoyed spending time with them. Our only regret is that they live so far away.

Her Uncle Joshua also came to visit and will be here for a few more weeks.

Sierra also got some new therapy toys. They aren't specifically made for therapy, but they work. :-)

This is a little rubber keyboard that I found at the thrift store. It is very sensitive to the touch so her slightest touches make it play. It is good to help her become more aware of her movement and develop more purposeful movement.
The glowing red thing is a Twilight Ladybug. It lights up in red, blue, and red. I'm not sure if she is able to see the light or not.

And last but not least......

....I am still having a hard time believing this one. Here is the story. My mother is by no means an animal lover. Growing up, we would always have to convince her to let us get another animal. Anyways, she was at my house the day before Christmas. We were chatting about Sierra and she mentioned that it would be good for Sierra to feel movement. She thought of crawling around with Sierra on our backs. Then out of the blue she said, "What she really needs is a little horse." I was so shocked! She said, "You could get her a little horse and he could stay in the pasture with Miracle and Cocoa." (Miracle and Cocoa are my horse and my sister's horse. They live at my parent's house.) After she said that, I jumped on Craigslist and found the ad for this little guy. We called up and made arrangements to go see him on Christmas day. The people selling him had received about 30 e-mails about him, but I was the first to call. We went to see him and bought him. :-) Horse therapy is SOOO good for disabled children. I am going to try to have Sierra ride him at least 2 times a week. My mother named him Praise. I call him, "Lil' Praise Pony."