Wrenn's First Week at Home

(Sent in by Nicole on Christmas Eve, 2010) It’s been one week now that we’ve had Wrenn home. I will tell you the excitement was so overwhelming I don’t think any of us got any sleep that first night (except for baby Wrenn, who has slept soundly every night!).Monday night up until 11pm we received 10 boxes full of medical supplies...

On the Eve Before Wrenn Goes Home

Sent in by Nicole at 1 am on 12/13/2010 - the day Wrenn is to go home.Yesterday Dr. Barb from the NICU visited Wrenn and we chatted for a good 45 minutes about how things were going. I explained to her that I sat with tears in my eyes last Thursday as I asked God to please let my daughter's nagging problems come to an end. Dr. Barb then told me a touching story about a time when things looked very bleak for one premature baby...

Hopeful for Homecoming

Sent in by Nicole 12/1/2010It’s so hard to believe we have been living in a hospital for almost 8 months now. Each month has honestly felt like 3 years. The days and weekends run together and Turkey Day wasn’t much different than any other day of the week, except we did go out for breakfast at Mimi’s Café and took Tanner to the movie Tangled, which he sat through pretty well until the last 15 minutes. I baked a little bit over...

Update from Nicole 11/5/2010

I noticed something when I saw Wrenn in her dress the other day; she is vulnerable and sweet and smells so good. She is and always has been my sweet little baby girl. When she was in the NICU in Orlando we couldn’t believe she needed a transplant. She seemed so normal and vibrant. We had emotional days in Florida and they weren’t even...

Life in St. Louis 10/17/2010

Sent in by Nicole this morning.I’m sitting in Wrenn’s room, trying to figure out how in the world to put my thoughts into words. My mind is on overload as I try to explain how time has passed over the last four weeks. For five months we were in a holding pattern and knew the goal; getting Wrenn healthy lungs. The anxiety of waiting was brutal and then once she had her transplant the ride turned more intense. For several days...

Twelve Days Later

With her daughter finally breathing without assistance, Nicole was able to take the time to sit down and write a message... straight from her heart!It's been 12 days now since Wrenn's surgery. I can honestly tell you that I've hardly had time to catch my own breath. The days and nights of 'waiting' were brutal and we did that as patiently as possible for 5 long months. But yesterday, October 3rd, my little fighter did something...

Tanner Update

Nicole sent this update to me a few days ago. On the eve of my godson's sister's double lung transplant, I am thinking of Tanner and how much he has been through these last five months.Those who have met Tanner ask about him often. I wanted to give a little update since this situation has affected him as well. We feel Tanner is a happy,...

Updates from Nicole

September 14, 2010When I first heard the news of Wrenn's genetic lung disease we were given a manual to read, which contained everything you wanted to know about a double lung transplant. Wrenn was only six weeks old and was still in pretty good health at that point. I remember thinking that the genetic tests had come back wrong; anything...

Wrenn Update: September 6, 2010

Yesterday morning we were told that Wrenn had a 103 temperature. This was extremely upsetting news because a blood infection could keep her from getting a transplant. They immediately sent off labs and gave her tylenol (another drug added to the mix). She had already been having trouble holding her oxygen levels and was going down...

Nicole's St. Louis Update 9/1/10

When I visited Wrenn today, I sat in my chair four feet from her bedside and realized that the medical equipment was literally taking over the room. The pole that holds her medications is overflowing with four different types of sedatives, electrolights, two antibiotics, calorie additives, breast milk, a nebulizer called Flolan and I'm sure something else I've missed, not to mention the medications that are administered...

St. Louis Update - 8/15/2010

Sent in by Nicole...There are several times I sit down to write about how things are going and then in an instant circumstances change. Wrenn had a good week after the doctors reintubated her (they inserted a larger tube to help distribute the N20 and Oxygen) and then yesterday and today she struggled to meet oxygenation at 100% support....

Photos from St. Louis

Wrenn's New HomeWrenn's Day Nurse, BethClose UpTanner's Art Work and Get Well CardsNicole Holding Wrenn - a Rare, Special Treat!Wrenn in the Big Girl CribWrenn with MittensLook at All the Machin...

Wrenn Update: August 2, 2010

Sent by Nicole ParrisIf I haven't said it enough, THANK YOU!!! To everybody for their wonderful letters, thoughts, donations, emails and prayers. Nurse April once told me that having a baby in the NICU means you go two steps forward and then three steps back. It is such a roller coaster ride and some days I just want off. Our faith is constantly challenged and then other days we're strong as an ox and can conquer anything...

Saying Goodbye To Orlando

Lisa M here - Nicole asked me to share some photos and thoughts about beloved friends and supporters left behind in Orlando. All of the following comments and captions from Orlando were written by Nicole. I've tried to organize them as best as I can.Orlando - One week and a million years away.Debbie surprised me with a visit shortly after...

St. Louis Day 7

This post was sent in by Nicole Parris.St. Louis Children's Hospital has done a wonderful job in making us feel at home. There are several retreats throughout the hospital that allow us to get away without actually leaving the hospital. On the same floor as the NICU there is a Ronald McDonald Room; we can do laundry, watch TV, play...

St. Louis: Day 4

This post was written by Lisa Macon.The first few days in St. Louis have been very busy for the Parris family. Nicole has kept me up to date via text messages when she gets a chance. I will share some of them, as well as some photos she sent me via MMS.July 25 3:17 AMWrenn had a rough flight as do most surfactant babies. Their lungs are...