Samara’s 2nd Birthday

Today 2 years ago, our lives changed forever!  Not that any parent can’t make that claim after the birth of their child.  This day for us was wonderful and frightening all at the same time. At just a few minutes old, they whisked Samara away to the NICU.  Excitement that she was here, but frightening because she had problems so quickly.  That day, we could have never, in our wildest thoughts, guessed we would be spending the better part of the next six months in the hospital with our little angel.  BUT…. now we know how blessed we were to spend those 6 1/2 months with the strongest little girl I have ever known.

We are changed individuals.  All of us are after going through the journey with Samara.  For me, I’d had very little loss of loved ones, prior to losing my precious baby.  I lost a very special grandmother after a long fight with cancer several years before we had Samara, but we had been blessed to have most of our loved ones still living.

This year it all changed for our family.  Almost one year after losing Samara, we lost another grandmother (my father’s mother.)  She had been very sick for a long time.  Her death was not a shock, but it was another loss.  It was just a few weeks later that my Dad was admitted into the hospital and was diagnosed with colon cancer.  We lost him 8 days later.   Going through all of this caused me to think about our journey with Samara a lot.  I reflected on those days we spent with her in the hospital fighting to live.  I reflected on last year (2012) trying to heal after losing her.  I will be sharing some of those reflections in the near future.  A friend said that maybe there is someone that needs to hear this story, so I will be posting more in coming weeks.

Today, I want to focus on more positive things.  From today until November 17th to honor Samara’s 206 days of life, we will be receiving donations for the families in the PCICU and for Ronald McDonald House of Nashville.  Please be in prayer about what you can donate, or if you have a group that is willing to help out with our donations.

For the Ronald McDonald House we will continue collecting the can tabs as we have done for many months.  It is easy to get groups to bring in soda or soup can tabs to help.  Maybe a sunday school group, girl scout troup, or just friends at work can use clean, empty, gallon jugs for collecting can tabs.  This is such a easy way to donate.  They collected around $10,000 at the RMH of Nashville in 2011 just from pull tabs.

My second goal is a biggie!  We stayed at RMH for over 5 months total.  Each month it takes $420 to provide a room for the families at the RMH.  I would like to get $2100 donated in Samara’s memory.  If you would like to get a group to donate or would like to donate yourself, message me or leave a comment on this post that your group is donating toward this goal.  You can post pledges that you will donate during the next fews months even if you cannot right now.  I will update to let everyone know how we are progressing toward that $2100 goal.  If you want to keep it private then contact one of our family members directly.  Every little donation helps and of course, RMH donations are certainly tax deductible.

Maybe you cannot donate money.  You might feel more drawn to help with my third goal. This goal is to collect items for the families of children in the PCICU.  We will be collecting gas cards, food gift cards (to to Taco Bell, Subway, or Dominos Pizza), baby lotion, travel size sewing kits, adult sleep masks,  reusable coffee cups or drinking cups (must have lids,) fleece blankets for parents, writing journals, and baby blankets.

I would love to find several that can make blankets for these babies.  I know we have so many talented individuals that can make blankets for them.  Having bright, happy colors in a room that is so full of medical equipment is uplifting.  It took me a while to discover this.  Maybe you have a group that loves to sew, you could truly bless the families going through their difficult journey.  Please message me or one of our family members that you have a group that would like to donate blankets to these families.  We would like them to be bright, pretty colors.  (Nothing blue or purple for heart babies, please.  It makes them look more blue than they already do.)  Heart babies are also very sensitive to overheating.  The blankets need to be thin like a receiving blanket not like a big thick fleece.  You can use your gifts to bless these families.  If you or maybe a church group can help with this, message me that you plan to donate to the babies in the PCICU.

I have chosen to turn our loss into something good.  I want to bless those that are walking the path we were on 2 years ago.  It is a very hard journey and the smallest of things like a food gift card or reusable coffee cup or a beautiful blanket around your baby can make such difference in the day to day struggles of having your baby fighting in the hospital.  Without all the blessings and prayers that we received, we could never have made it through our journey.  Thanks to  everyone again for all you have done and for all who are going to help us collect again.

Knowing we can do something positive in Samara’s memory helps us all to heal and helps those forced to walk the journey with their child now.  We can keep Samara’s memory alive in a great way by helping those that need it so much.

Thank you for helping us keep her memory alive!

1 comment April 25, 2013

HAPPY 1ST BIRTHDAY, SWEET SAMARA!

As we close the day of Samara’s first birthday, I think about the many ways we could focus our attentions.  I choose to be thankful that God allowed us to have her for 206 days.  We were told in late December 2010, that I would not likely carry her to my next doctor’s appointment (2 weeks later.)  Not only, did I carry her those two weeks, I carried her another 4 months.  I cannot say those months, nor the 206 days that followed were easy by any means.  I can say that it was worth every appointment, every struggle, every day spent at the hospital to get to know my little Samara!  She was so spunky, such a fighter!  I praise God that we had the chance to meet her.  I wouldn’t trade that for anything.

We, of course, wish she had lived, but that wasn’t the plan that God had.  We could do all the “Why” questions until we were angry & bitter, but “Why” do that to ourselves.  God had a plan for her and she could not have left this world without completing that plan.  We miss her greatly, but as Alex says in the song….”Jesus, we trust in you.”  That is how we have made it through this whole ordeal.  Trusting that God is in control.  No matter what we go through, we TRUST.

Thank you all for remembering her with us today.  Thank you to everyone that is helping collect items for the family gift bags and for the Ronald McDonald House.  I look forward to taking them up there next week!

3 comments April 25, 2012

“Sister of Mine (Tonight)” song

Alex wanted to publish the song that he wrote and performed for Samara’s funeral today in honor of her birthday.

He wanted everyone to listen and remember our wonderful little Samara today!

WARNING…… GRAB TISSUES!!!!!!

(And I wouldn’t listen at work, either!)

http://www.youtube.com/watch?v=ZmMbzm0Boe4&feature=youtu.be

1 comment April 25, 2012

Approaching 1st Birthday…..

I know I have been silent for the last several months.  I have had so many people tell me that I needed to continue with my blog.  There is so much I have thought about posting as we have had to work through our grieving process and learning to live with the hole that was left in our lives.  To answer the ultimate question that everyone seems to have…. We are all in a healthy place in our grieving.  We are doing well.  We are enjoying having our family back together.  There has been so much to catch up on in every way after having been at Vanderbilt for almost 7 months, then the holidays were right after Samara’s funeral.  It was a lot to deal with as you can imagine if you were gone from your house for 7 months.  What would your house, bills, and work look like?  I had teenagers running things for the most part of that time.  They did amazing, considering, but things were very neglected.  Work…. it has been a crazy up hill climb to catch all that up.  Those things aside, we are good.

This certainly doesn’t mean we have “moved on” but we have learned to live with our hole.  Samara will remain a part of us forever.  That is what brings me to post this blog.  We are approaching what would be her first birthday.  We want to honor this day by making a donation to Ronald McDonald House of Nashville and giving out gift bags to the families of heart patients at Vanderbilt Children’s Hospital.  Anyone wanting to join us in remembering this special day can donate by sending items or checks to the address below.  We will be creating about 20 bags.  Items that we would like to include are: beanie babies, receiving blankets (no blue or purple), baby lotion, travel size sewing kits, adult sleep masks,  reusable coffee cups or drinking cups with lids, blankets for parents, journals, gift cards to Taco Bell, Subway, Dominos Pizza, or any gas cards.  If you have any further ideas, I welcome suggestions.  We will be collecting through May 1st.  I was a bit late getting this posted, so I am giving through the end of the month.  If you need more details, post a comment and I will get you my contact information.  You can also send checks payable to “Ronald McDonald House Charities of Nashville” or if you want your gift to go toward providing the gift bags for the families at Vanderbilt, make checks payable to Gateway Church.  We will probably do this at least twice a year for the families there.  If you want to be involved with more of this in the future, just let me know.

Mail donations to 211 Maxwell Chapel Road, Unionville, TN 37180

I want to thank everyone who supported us through the most difficult time in our lives. The support was unfathomable. We could have never in our wildest dreams expected the support that we received from our community, many of whom never really knew us.  Without the support of our family, friends, and community, we could not be where we are today.  God used so many people to get our family through this past year.  It still shocks us when complete strangers tell us they were following the blog.  It really makes me feel so completely humbled by how many cared so much for our little girl.  I just want to thank you all.  I know this is very delayed, but very heartfelt!  Thank you so much!

And thank you for helping us remember her special day  this year!  God Bless!

This picture was taken in June when she was home for the first time, showing her without all the wires, just her feeding tube.

2 comments April 18, 2012

Celebrate Samara’s Life

We welcome all to come and celebrate Samara’s life with us. Services will be held for our perfect little angel on Monday, November 21, 2011 at 5pm CST with visitation from 2-5pm CST at Gateway Church, 1304 Madison Street, Shelbyville, TN 37160. We are asking everyone to celebrate with us by wearing pink or brown or both.

In lieu of flowers we are asking for donations be made in her memory to one of the charities that greatly affected Samara’s short little life.

Donations to help future heart babies mail to: Vanderbilt Gift Processing, Attn: Pamela Burton, Loews Vanderbilt Office Complex, 2100 West End Ave. Suite 900, Nashville, TN 37203 Phone: 615-343-0464   or email: pam.burton@Vanderbilt.Edu . Please specify the gift is for Vanderbilt Children’s Hospital c/o Pediatric Cardiology Department in Memory of Samara Anne Powell.

Donations to help the children in the hospital to have their parents near them during their life struggle can be made to Ronald McDonald House Charities of Nashville
2144 Fairfax Avenue
Nashville, TN 37212 or donate online: www.rmhcnashville.com/donate/honormemory. Please note the gift is being made in Memory of Samara Anne Powell. ($15 pays for a family to stay one night, $30 covers 2 nights, $105 covers a week, $420 covers one month, and $5475 pays for an entire year.)

Your donation to either of these charities will change another child’s life. Please know the need is great!

Your support has been indispensable. We could not have made it through this without you all lifting us up daily in prayer. I am certain that is how we kept going. Thank you for the continued support during our great loss. We love the words of encouragement. It is an honor to see how her life affected everyone. I welcome more stories of how your life has been touched by Samara’s journey.

7 comments November 19, 2011

Tonight I post the hardest thing I could possibly ever post.

After 206 AMAZING DAYS, our perfect little fighter left us. It is HORRIBLE, but it happened as perfectly as it could. Her heart just stopped. It was fast and peaceful. She was being held and loved for hours leading up to her final moment. She fought long and hard through this horrific journey. I am so proud to say she was my daughter! She is so amazing. I wish you could have all gotten to know that spunky little girl. She was perfect! She will be missed more than words could ever express.

This will be a rough time for our family. We will give more details when we fumble through pulling this all together. We appreciate all the love and support we have received through all of this. Many of you fought right along side us. We always know that we gave it our all! We never gave up, and neither did many of you. THANK YOU!

The staff at Vanderbilt made today so great. They helped us through it all. They are like family after all of these months. Some cried with us, but all mourned. I will never know how they do what they do. I won’t know how to not see them every day. They will be missed! Thank you all at Vanderbilt!

Samara Anne Powell   4/25/11 – 11/17/11

34 comments November 17, 2011

Perspective

Rocky day! There were several times that it looked VERY BAD, but those times came and went. We spent hours holding our perfect little Samara. It was wonderful! And by the numbers on the screen, she ate it up, too. It was a rough day that many times looked very, very, bad. The odd thing is when it was bad it was HORRIBLE, but the rest of the time was very calm, peaceful, and uneventful. We were given total privacy to just love on our baby. That part was great! Since there is no medical intervention, there aren’t a lot of people coming in the room and making Samara mad. She rested very peacefully and enjoyed being loved on.

My only closing thought is…. she IS still here. I THANK GOD FOR EVERY DAY HE BLESSES US WITH HER! With the situation being the way it has been, it puts things in clear perspective. We value so many of the important moments with ALL our kids. And those problems that used to seem important, just don’t matter. PERSPECTIVE!

“Then Jesus answered and said unto her, O woman, great is thy faith: be it unto thee even as thou wilt. And her daughter was made whole from that very hour.” (Matthew 15:28)

4 comments November 17, 2011

Transparency

I have tried to be transparent through so much of this journey. There are times that I still hide parts. I have been afraid that I might cause another to stumble if I revealed too much. Will another person stumble because of my open, crazy, faith if I am wrong? (That IS doubt, isn’t it?) I have struggled with that question for 6 1/2 months. God has forced me to reveal more of my faith over the last 4 weeks than I would have willingly revealed, ever. Although we all (those reading the blog) seem to believe in God and Jesus, we don’t have the same beliefs when it comes to healing. We don’t have the same beliefs about hearing from God or many other things. The truth is that I have been holding on for these long months to a word that I truly believe God gave me. He told me “Your faith will heal her.” This is the reason for the scripture that I have been using at the end of my posts. When I found it during a study, it leaped off the page to me. It isn’t about my faith, but my faith in God. I have had many say she might be healed in heaven. That would go against the word that I was given because my faith isn’t needed in heaven. The only way for that word to come true is for Samara to live on earth. (So there it is out in the open for all to see!) This is how I have held on in spite of everything to Samara living in spite of everything that happens. I had a conversation today with someone very special. She said you either believe Him or you don’t. If I believe this word came to me from God, then to not believe that word would be a sin for me.

I feel like all I do is ask you guys to pray. I know that prayer works. We believe in prayer. We believe in God. We have faith in His healing powers. We have faith that he is going to heal Samara. Some call our faith stupid. They think we are in complete denial of the truth. I am ok with that. I really don’t care how I look at this point on this journey. I am proud to have “stupid” faith. Some call it blind faith. I have certainly questioned God about my faith. Every time I question him about my faith in Samara’s healing, he chooses to send me more encouragement. This usually re-energizes me. I am usually ready to charge into battle (spiritually speaking.)

As I watch things with my human eyes, this is not something I have been able to do so easily today. With my human eyes, I see Samara is in what is classified as heart failure. The labs that came back at 8pm indicated this. Earlier today these numbers dropped back to the normal range (below 2)…. but at 8pm it had climbed to an 8. The doctor discussed how bad this was with us. They gave everything they would normally give in this situation and did another blood gas. The next one came back even higher at a 10. This morning the doctor said to me that he was shocked she didn’t go into arrest with her numbers that bad, and she is back to a 10 tonight. This is what my human eyes see. This is ugly. This is scary. This goes against everything I have believed. I was reminded in my shower tonight as I was talking to God that I should “walk by faith, not by sight.” Walking in faith means trusting God regardless what I see. So this is what we are doing.

There is no intervention that would bring those numbers back in line, or they would have worked. She is on maximum ventilator settings and they won’t be going up on her nitric anymore. If her heart stops, they will not do CPR. They can’t “bag” her anymore, because it causes her heart rate to drop. Medically speaking, there is nothing left to do but keep her sedated and comfortable. So we wait….. either the word I received will be fulfilled or I am a crazy freak! I have peace with that. (Go figure!) We are actually going to sleep knowing that whatever God’s plan is, will be done regardless what we do. It is all in his hands, which is where it has always been.

“Then Jesus answered and said unto her, O woman, great is thy faith: be it unto thee even as thou wilt. And her daughter was made whole from that very hour.” (Matthew 15:28)

13 comments November 16, 2011

Please Pray

Got another one of those super early wake up calls from doctor this morning. Samara had only one “desat” episode overnight, but it was really bad. While bagging to bring her up, her heart rate dropped to 50’s. (Her normal heart rate is like 120’s.) They did a blood gas, and it was very acidic (critically high.) They went up on her vent settings to correct that, and it worked. Another level on the gas was very bad. It shows how the heart is functioning. It was a 10 and should be less than 2. It has come down to a 4 on the last blood draw. She has had several more episodes since then, after any type of care. They had to go up on her nitric to get her oxygen level back to a normal level.

I noticed what looked like blood coming out of her stomach acid. It tested positive for blood and was also acidic, so they had to stop her feeds. There is also blood coming out when they suction her breathing tube. This likely caused by the pulmonary hypertension episodes, which seems to be what is causing her “desats.” The doctor told me it doesn’t appear to be a lung issue. Her lungs are not worse in any way that he can see. Her episodes are just really bad.

We need to pray for them to stop! We need her heart to not be stressed and to work effectively. Wherever the blood is coming from, needs to be healed. She needs to be able to tolerate care from the doctors and nurses without dropping. She needs to be calm and comfortable. They need to be able to come down on her oxygen on the ventilator. It has been too high for too long! Pulmonary Hypertension is the focus of our prayers. Samara needs healed of it.

4 comments November 15, 2011

Samara NEEDS Restoration

After such an AMAZING progress last week, Samara is really struggling. I kept thinking after the bladder infection is treated that she would bounce back. Yesterday, she fell backwards, way….. backwards. She had a very rough night and today is not much better. Sean and I are aware that this backwards fall is because God was getting so much praise for her progress last week.  This is just an attack from the enemy. It is still VERY hard to watch.

It, also, makes the staff members who don’t believe like we believe think this is just the progression of her health problems. For someone that never really thought we would be taking our child home, it just looks like she is getting sicker. Our team of doctors changed on Saturday. This means for this new team, the tone will be less positive this week, unless something dramatic changes that tone. They came on for the week to see Samara doing extremely badly! Please pray for the team this week to be positive, have wisdom and direction to treat Samara, and to see the amazing work God can do. Pray for God to show off bigger and better this WEEK!

Samara needs to get back to where she was last week by moving forward with little to no problems. We are asking for specific prayers for her pulmonary hypertension episodes to CEASE! She needs to stop having “desats” every time the nurses touch her. She needs to get back to minimal ventilator settings, and then, of course, get off it permanently! We are asking God to show off in a way that makes last week look like child’s play! Our God is a God of Restoration. Our prayer is that He restores what the enemy stole from Samara’s progress, two fold! Pray with us specifically for that!

Thank you for all prayer support! Don’t forget Olive, Tyson, Drake, Emery, Austin, Zabian, Gabriel, and all other children up here fighting physically and spiritually to live!

“Then Jesus answered and said unto her, O woman, great is thy faith: be it unto thee even as thou wilt. And her daughter was made whole from that very hour.” (Matthew 15:28)

4 comments November 13, 2011