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Saturday, December 25, 2010

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 and medications. The very next morning a nurse from a program called ‘WINGS’ arrived to train me on how to do Wrenn’s infusions through her broviac (The line that runs directly into her heart). I won’t lie, I was pretty nauseous the entire day from stress. I felt like an elephant was on my chest and couldn’t take deep breaths. There was so much to do and I was very overwhelmed to the point of almost cracking. Wrenn is fed via her G-button every 3 hours, all day and all night (Until she learns to eat). She receives 12-14 meds daily that rotate every 6 to 8 hours. Many of the medications have to be done exactly 12 hours apart to avoid rejection; get the dose wrong and I can cause her to go into severe rejection: NO PRESSURE!

By the end of Tuesday, I realized I hadn’t held Wrenn once. I was so busy trying to get everything straight that I didn’t have the chance to be mommy (to her, OR to Tanner). Every second she wasn’t awake I was preparing the next feeding or next medication or putting supplies away from Tanner’s reach. We were supposed to have a physical therapy appointment that same morning at 10:30 but didn’t make it to the hospital. We never even left the house. It took all I had just to get everything into one day.

At that point, I was pretty upset about how things were going because there was no routine and everything was so new, even though I had watched the nurses do these same things a hundred times, but this time, I was on my own. The other issue I needed to address with great care was Tanner’s reaction to Wrenn and the lack of attention he’d receive as I tried to get everything organized. Frustrated, I later called my mom who reminded me that loving my child and nursing their needs, is just as important as play time or cuddle time. That made me feel much better because everything I do for her is out of absolute necessity for her survival. The responsibility is overwhelming in just the execution alone, especially for someone who doesn’t have a medical background.

Each day in that first week I told myself the routine will get easier. Tuesday morning it took me an hour to pull all her medications and then I took too long to administer them. However, this morning (9 days later) I timed myself and it only took 20 minutes: I even measured out the medications for the entire 24-hours. I have improved in several areas and I know it’s just a matter of time when everything will feel second nature.

Tanner has been a doll. He has no issues when we hold Wrenn but sometimes he likes to cuddle at the same time on our laps. He plays with all her toys and throws away her dirty diapers. In the morning he asks where Wrenn is and asks to see her. He has been a perfect sibling and I feel so blessed that he has adjusted so well considering all he has had to deal with in the last 8 months.

On Monday and Thursdays I have to draw blood from her broviac line and take it to clinic, where a team of doctors and nurses from the pulmonary team evaluate her progress and overall health. The appointment is at Children’s and lasts anywhere from thirty minutes to two hours, depending on my questions and their concerns. Right now Wrenn has a scheduled bronc on Tuesday. On Monday she will be put under for the profusion test and CT Chest Scan. They are always checking for severe rejection and oxygenation. If all goes well this will be the last bronc until March. We should have the results by the 30th of December.

Clinic is typically twice a week but I am hoping after this bronc that we might go to once a week. Eventually when her labs level out on her rejection medications Dr. Huddleston will take out her broviac. Labs will then be drawn once a month instead of twice a week.

I think once the broviac and IV infusions go away I will be less stressed. Adjusting to two children at home, and then having one with special needs is challenging, but I know things will get easier or at the very least be more familiar.

Wrenn is such a good baby. She is already spoiled and prefers to be in the living room with everybody. It melts my heart, knowing that she likes being with her family and is a huge cuddler. She is getting over her oral aversion and eats peas, peaches and loves bananas. She even takes water from a spoon. It’s cute seeing her eyes widen as she swishes around new flavors. My hope is that the G-button will go away within a year and she’ll be eating like a normal baby. In order for this to happen she will have to swallow her medications by mouth. Baby steps! I keep saying we’ll get there in WRENN time!

When Tanner lays on the floor beside her she gets the biggest smile on her face. He is great entertainment for her and NEVER stops! Luckily he is used to being at home with me and can play on his own for long periods. I am so proud of him for being such a great helper and a compassionate big brother.

Wrenn smiles all the time. She wakes up happy, goes to bed happy and plays happy. It amazes me how perfect she is after all the pain she has endured. I am in awe at her strength and desire to move forward. She seems to have no limits but only leaps and bounds. She IS my inspiration!

I will tell you, I’m a planner and what I’ve learned from this entire situation is that you can’t plan too far ahead. Life for us is still day-by-day because things can change in a New York minute; for the good OR the bad. I am very thankful to have such a great network of support both IN and OUT of the hospital! Our family has extended beyond DNA and we count our blessings every single day.

Oh, and to the Mason Jar Guardian Angel, thank you!

Monday, December 13, 2010

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 and then, as if a gust of wind came into the room, the entire situation for that baby had within minutes changed for the better before everyones' eyes. Dr. Barb said she still has no idea what happened but knew it was done by a higher authority. She said things like that happen in hospitals all the time and I believe her because it happened for Wrenn, who is acting like a normal, healthy, happy little 8 month old baby.

Last Thursday a CT Scan showed that Wrenn had accumulated fluid near a ligated duct; the fluid is chylus, which seems to be the entire reason she was getting puffy and needed oxygen. The duct can take up to six months to heal so we will repeat the CT Scan next week to see how things are going in the chest cavity.

On Friday her transplant surgeon, Dr. Huddleston, put in a pigtail so the fluid could drain. Within seconds her wheezing stopped, her breaths became less laborious and by the weekend she was breathing room air. One little thing (2 oz of fluid) caused all those problems. That same afternoon we also tried bolus feeds, which means she now eats every three hours instead of continuously. Her gut is digesting her food much better and her gas pain has disappeared. Her belly distention subsided and she is the happiest little baby ever! These blessings have given the 7 West Team the confidence that Wrenn will be discharged locally on Monday.

The idea of bringing Wrenn home excited me to the point of tears but I was much more excited for Wrenn, who has never felt the wind on her face, or felt the heat from the sun shine down on her body. I imagine she’ll be exhausted from all the new things she’ll see in just the car ride alone. For the last 8 months she has lived in a space that is only two feet wide and five feet long. Her only stimulation has been people and the surrounding of beeps and bells going off every minute of each day. She has listened to only music and memorized the eyes of those behind the mask. I’m certain she could recognize the now familiar voices of those who have cared for her on a daily basis.

It is amazing how much better Wrenn looks now that she’s breathing easy. She is always at peace, smiling, rolling, playing on her belly, kicking her feet high, chewing on her fingers, reaching against gravity, focusing on moving objects and is just moments away from her first giggle. Nobody, including her team of doctors, can believe what a difference 24 hours made in her improvement. I, like Dr. Barb, can only say that prayers were once again answered at the right time.

Several nurses have told me that they’ve had their own kids in and out of the hospital here and there or in the NICU for a few weeks and said it nearly killed them. Most people can’t imagine living this type of life for 8 straight months, especially with another child to care for. To be honest, I’m burned out. I feel like I’ve been doing this for 3 years. A week felt more like a month. Nights were sleepless and still are with the anxiety of not screwing things up when she gets home. Panic strikes my face at the fear that I’ll miss something or that Tanner might pull out her broviac. I’m looking forward to the day when I do things without thinking about them because it has become second nature. I’m sure it won’t be long.

How have I survived? First and foremost my family in Orlando, the Winnie Palmer nurses kept me sane when I rode the first part of the rollercoaster. They were there for us and are still a big part of Wrenn’s life today.

The doctors and nurses in the ST. Louis NICU kept Wrenn alive long enough to get her new lungs. They had the hardest job because it was the darkest days for our family as we waited those terrible 7.5 weeks. I remember Dr. Sweet’s last words before placing Wrenn on the list: ‘We feel she’s a good candidate, hopefully she’ll live long enough to receive new lungs.’

The CICU and 7 West nurses and doctors will continue to be our extended family as we come back and forth to St. Louis for the rest of Wrenn’s life. She will have the same team of doctors forever. The same dietician forever. The same procedures forever. The St.Louis Children’s Hospital is Wrenn’s new home away from home. Over time we hope to see great improvements for lung transplant recipients and a positive shift in the survival statistics.

The coordinator in 7 West, Carol, today told me that Wrenn could end up back in the hospital for a few days, to a few weeks, to a few months if she gets sick or has an infection. The transplant team wants to hear about a sneeze, a cough, even a slight runny nose; all require a phone call and an office visit. What’s great is that her doctors (and there are MANY of them), know Wrenn and her entire history. So we have an even larger extended family beyond our own DNA.

Around Christmas, Wrenn will have another profusion test and bronc, to test for possible rejection. If all looks good, she won’t have another one for three months (unless something comes up, it could be sooner).

On Saturday afternoon, the team at Children’s put in Wrenn’s car seat. My eyes welled as the reality of our news had finally hit home. Wrenn is coming home. My little girl is finally leaving the hospital and beginning her new life with her family. At that moment I wondered how I had done it all those months without losing my mind. Prayers. Guidance. Family. Friends. Neighbors. The Ronald McDonald House. Doctors. Nurses. Strangers. Emails that kept me going when I didn’t think that I could. Blessing after blessing pulled me through the darkness. Yes, I know the road ahead is unknown, but at this point, everybody’s road is unknown. Wrenn is no different than any other person in that aspect. Life gives you NO promises. Everyday is a gift. I love the time I get with my kids and boy is it going to be nice to have them both under one roof.

Wrenn will go to Clinic twice a week. I’ll draw blood from her broviac to have her levels tested. She’ll go to the hospital twice a week for therapy to help her catch up developmentally. She will be watched like a hawk even though she’ll be at home. When the doctors feel her levels have evened out for the rejection medications and she has fully recovered from transplant surgery, she will be discharged and only return to Children’s every three months for her lung tests. We hope and pray that her visits will be short and simple.

On Tuesday night, Wrenn has a coming out party, which is sponsored by the transplant team. Every child who has received a lung transplant is invited. She will have to wear a mask but will get her picture taken with Santa and big brother will be there by her side. It is something I have dreamed about since last Christmas. I can’t tell you how excited we are to be attending. Words cannot describe how blessed we all feel. Thank you again for keeping our family in your prayers and supporting our family.

Wednesday, December 1, 2010

Hopeful for Homecoming


Sent in by Nicole 12/1/2010

It’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 CafĂ© and took Tanner to the movie Tangled, which he sat through pretty well until the last 15 minutes. I baked a little bit over that weekend and gave some treats to several nurses, doctors and staff at the Children’s Hospital. It felt good to do something nice for someone else, especially those working away from their own families.

Wrenn continues to challenge the doctors. A couple days after her bronc she started wheezing and so they did treatments, thinking the procedure had stirred up secretions. Then they thought it might be a need for more lasex so they upped her dosage and changed it from IV to G-tube form. Most kids don’t respond well but she has done great on the switch, the wheezing however hasn’t gone away and the cause is still a mystery. It’s a day-to-day issue.

The doctors can’t explain why she’s still on oxygen (1/2 liter). Every time they try and wean her she drops to the mid 80’s, which isn’t horrible (since we’ve seen her in the 30’s) but she needs to stay in the mid 90’s.

When I think about what her body has been through, MAJOR transplant surgery, it takes time for all those tiny little parts to reconnect and start working again. I am told that many of these kids (NICU babies included) thrive once they get home in a positive environment and routine. I pray that Wrenn will be one of those kids and that the ‘issues’ will just go away. If there’s one thing I’ve learned, timing is everything.

Twenty years ago the doctors at Children’s had NO interest at all in doing lung transplants. They felt the organ was too delicate and that the results would be a disaster. A few years later they changed their minds but found that the odds of survival for lung transplant recipients were not as good as other transplant recipients (kidney, heart etc.). The lungs are exposed unlike the heart and kidneys, which are protected. When a person gets sick the lungs suffer with viruses and colds. Congestion and infections make people very ill and sometimes hospitalized. Viruses are particularly bad for lung transplants recipients and can cause severe rejection, resulting in death. This is one reason the doctors prefer Wrenn leave the hospital, especially during flu season. She cannot afford to get sick, EVER. She will have 3 flu shots this year. Bugs LIVE at the hospital and so it is the WORST place in the world for an immune suppressed person to stay. Ready or not, we are hoping she comes home next week.

Coming home means that WE are taking care of Wrenn. It is going to be really tough in the beginning. She has medications due every two hours. She is still on continuous feeds and so I’ll have to make sure her feeding bag is always full. She can’t burp and will need to be vented with a syringe every couple of hours because she of her GI issues. The home care that we provide is just part of the normal parenting part of her days ahead. She will, however, be going to what is called ‘Clinic’ every Monday and Thursday. On those days I draw blood from her broviac and bring it in to have the levels tested. They want to make sure she is not getting too much or too little rejection medications. They’ll also check her Potassium, Calcium, and Hemoglobin levels. They do a full check-up on her those two days to make sure she is problem free. In conjunction to Clinic she will be at the hospital three to four days a week for different developmental therapies. Our days at the hospital are not over with yet and until they feel she is ready to be totally discharged, we will continue that routine. Typically it lasts three to four months post transplant but varies patient to patient.

Hard to believe that Wrenn is number 84. There have only been 84 infant lung transplants ever done in the world. Even with all the precautions, the statistics are not favorable. 50% make it to 5 years of age. 20% make it past 10. We chose surgery because 20 years ago they didn’t want to do lung transplants. Obviously something changed their minds. WE are banking that medicine will change for the better in the next five years and the statistics will improve. In the last five years nothing has changed. Medicine is relatively new and I just know she is meant for great things. We have continually told our families that this situation is a leap of faith.

Holidays with Wrenn will always be a big deal for our family. I want to make sure that Wrenn feels like the most special little girl in the world. I want every day she is with us to be great. I want Tanner to find inspiration in her life and celebrate the opportunity she has been given. When I say that we have had many blessings that is ALL I see; an opportunity to beat the odds and to celebrate her life. I just know her journey will be one for the books. I visualize her telling the story to her own children one day.

I’m an emotional mess when I think about her coming home. It’s a HUGE deal. It’s a blessing. It’s scary. It’s exciting. It’s about time!

Friday, November 5, 2010

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 the ‘hard’ days yet. Once we got to St. Louis Wrenn only wore a diaper because there were so many wires and tubes. I realize now that her wardrobe (or lack of one), was a key factor in keeping my emotions and sanity in tact for those 8.5 weeks. I saw her as a warrior, the fighter we ALL knew she could be. I think on most days I held it together because she was holding it together. And then with everybody praying so hard for our family we somehow got through the storm and are finally seeing clear skies, even though we remind ourselves everyday that the weather is still very unpredictable on the months and years ahead.

Seeing Wrenn in her dress made my eyes swell. If I lifted up her shirt and took a photo of her chest, you would see what is hidden underneath: All the holes, the broviac, the bandages, the scars and leads. Today, when she cried, I reached underneath her arms and picked her up from her crib and comforted her with a steady rock. She stopped crying right away. Not being able to do that one thing haunted me for so many months I thought I was going to go crazy. I always needed a nurse for fear of extubating her or pulling out drainage tubes or making her oxygen levels fall into the 40’s. I’ll admit, I’m nervous about her incisions and pulling out her broviac and worry I’ll make her cry. I feel with time my confidence will improve and then I’ll just do my job, love on her without worrying about anything else. For now I’ll keep practicing.

Wrenn looks so vulnerable and dainty now and so I find myself just as vulnerable. The wall I had built leading up to her surgery has come down and I can finally, finally see the light at the end of the tunnel. Lately, tears fall at almost everything. I had lived in an area of gray for so long that I now have swings of highs and lows and oh my, do I LOVE the highs. Everybody prayed that Wrenn would breathe on her own. I lose myself in wondering what that first breath must have been like for her. God answering our prayers made it possible for me to hold those rollercoaster of emotions inside for so long. And now I realize I need to enjoy each milestone. Embrace the good. Smile at everything she does. And take deep breaths like my daughter but do it without thinking about it.

Wrenn was in Room 522 in the NICU for 8.5 weeks and 4 feet away was a conference room where they had a scrapbooking class every Tuesday and Thursday morning. I was never in a place to start such a project. I was always holding Wrenn’s hand, talking to doctors, eating in the cafeteria or taking care of Tanner. This past Tuesday I entered that room and put together Wrenn’s birth page. Believe it or not, those memories are so vivid in my mind but so painful, that to have done this project before transplant would have been too difficult. I wasn’t in a place to document her life. I was afraid of jinxing her and felt that putting her journey in a book was somehow finale. I was waiting for Wrenn to tell me when to start and so now I feel it is my time to heal. I feel ready to reflect. I will recall the bad so I can embrace the good. Appreciate what I have and where we have all come from.

We still have mystery issues to get past. She has been a difficult patient and has already spent a month longer in the hospital than most babies after transplant. She will have many appointments during the week to get her developmentally caught up. She will need to co-exist with Tanner, who I know will be an amazing big brother. My kids will be jumping on the bed and getting in to trouble within a year. I am telling myself that the journey isn’t being there, it’s getting there. I’m okay with that. I have so many people praying for us everyday and I know this is why Wrenn has been so blessed. This is why the four of us are STILL standing. This is why we are all going forward. Please continue to keep us in your prayers. And thank you for sending us so many wonderful Guardian Angels. I will continue to update you on Facebook so you can see every blessing you send our way.

Xoxo,

Nicole

Sunday, October 17, 2010

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 (even while lacking sleep), we were on a major HIGH. Before surgery we were told many times of the possible complications she might have during and after her surgery (there were MANY things that could go wrong and death was one of them!) and oddly enough she has pretty much hit them ALL. So what happens when you’ve hit that high and are told there are some MAJOR complications? You hit way LOW. Every bump pulls me down further and further to the point where I feel like I’m drowning and I can’t come up for air. Time, I am told is what she needs to get over these hurdles.

This last week hit me hard. Wrenn had fluid in her lungs, her drainage tubes were still putting out unbelievable amounts, her X-rays looked like they did at birth, she was put on SI-PAP, then down graded to a different form of C-pap, and is now on a high humidity nasal cannula at 6 liters and 40% oxygen. This scenario is very familiar to my Winnie Plamer nurses who went through the diagnosis with us since when was born. Coming full circle is eerie but I know God has his reasons. Maybe it’s closure, or testing the lungs, or testing Wrenn one last time. Maybe it’s a test for me, to always remember where we’ve come and that even with new lungs we can go back. It’s a reminder how she is still vulnerable to her everyday environment. Life as a transplant recipient is NOT easy and we will all have to make drastic changes when she comes home.

The duct will take six to eight weeks to heal (she will not receive breast milk until then). An ultrasound revealed that her diaphragm is paralyzed. (This can be a pinched or cut nerve from her surgery and/or from being on the vent for two months (as well as the paralyzing drugs). That in itself will take a good two months to recover. The surgeon told us today that they are going to wait and see how she does over the next few days and decide if surgery is necessary. (Surgery would be a huge setback). Pray for God’s healing hands on that issue!

On top of all of that, she is due for her one month bronc the end of next week, which tests for rejection. This procedure is done in the OR and there is always risks of infections or complications. (Pray we have none).

Most patients are out of the CICU by now but Miss Wrenn has decided she likes it here, so we wait and see. I believe she is supposed to be there and WHY that is, will most likely be revealed in the future. I have learned that my questions ARE answered, sometimes sooner, sometimes later, but ALWAYS answered.

Wrenn’s nurse last night, Elisa, was telling me that she has worked in many departments of the hospital and that she has seen more miracles in the CICU than any other floor. God continues to amaze me at how he brings guardian angels my way, and reminds me that HE is always with us and surrounds my little girl as she fights these battles. Wrenn doesn’t know it yet but I look to her for my strength and of course to my blog, which has kept my spirit high even in my darkest hours.

We want to thank everyone for their continued prayers and wishes as we continue down this path of the unknown. I’m so glad we don’t have to do this alone! XOXO


Monday, October 4, 2010

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 amazing; she is now taking her own breaths; no more oxygen. Just thinking about it makes me cry and I keep thanking God for answering all of our prayers. Jason and I feel lucky to live in a time that allowed us to give her this opportunity, even though it comes with great challenges. As I've continued to say, this is all a leap of faith.

Most of you don't know this but prior to having Tanner I had four natural miscarriages over the last 8 years. I truly feel as though Wrenn has a purpose in our lives. She is meant to be and I know she will do great things. A genetic scientist would say 'God got it wrong, he didn't catch the mistake at conception' but I know God had a plan and will continue to carry us through this journey every step of the way. I am touched every day by the support our family has received. I'm honored that Wrenn has touched YOUR lives.

But for the next few moments, there is one special family I would like to talk about...

When I was told of Wrenn's condition when she was just six weeks old, the pit of my stomach went numb. There was no chance for her to get lungs from a living donor. This meant another family would lose a child and be faced with a very difficult decision. I'm sure every mother would agree, chills go up and down your spine as you shake your head and say, 'I can't even imagine'. Every day since Wrenn's diagnosis I have thought and prayed for the donor's family. I knew something terrible would happen, five months before it happened, and found this scenario heartbreaking.

At 5 pm on the 21st of September I was told Wrenn would be getting her lungs later on that night. At that moment my voice silenced but tears flowed down both cheeks. And I immediately prayed for 'them', thanked them for the gift they had given to Wrenn, and asked God in a whisper that they'd one day be strong enough to contact us. And then I thought, maybe that's asking too much. It's hard to put yourself in their shoes and I hope I never have to. I will allow God to guide them in whatever is right for THEM.

Over the last five months I also thought of the other transplant recipients who received eyes and saw for the first time, or got off of dialysis, thanks to their new kidney. I think of that baby who had been waiting five months for a new heart and received one the same night. In several ways, Wrenn is connected to all of those same transplant babies. They share the same gift of life from one family and were all given a second chance, an opportunity to live and play, and each of these children will hopefully have a chance to one day inspire others by telling their stories.

The donor's family will ALWAYS have a special place in our hearts and I know they'll be in your hearts as well.

Tuesday, September 21, 2010

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, normal child. He loves the sibling daycare room at the hospital and enjoys playing with other children. He's a 'joiner' and especially likes older kids. With everybody's cards and emails, Tanner has helped decorate Wrenn's room, filling it with artwork, stickers and finger painting projects. The daycare room often has visitors for the children like a petting dog, clown doctors and various people who come in like a gardener who helped him make a necklace out of flowers. He is learning so much and gaining more independence every day.

On the nice days Tanner and Buzz spend some outdoor time at the Ronald McDonald playground.


You might remember the BUZZ doll we bought him just before leaving Florida. The two have bonded and I know now that Tanner is going to be a GREAT big brother. He has done a fantastic job teaching Buzz on how to be an earthling.


Buzz even gets fed. Some times Tanner will ONLY try something new if Buzz tries it first.


Buzz gets just as much love as mommy and daddy

In the hospital, Buzz pushes all the elevator buttons. At night he turns all the pages when we read books. All that play makes Buzz dirty and so sometimes Tanner tosses Buzz into the shower, which scares mommy half to death when a super hero enters the scene unannounced.

All in all we are adjusting to St. Louis as we patiently wait.

Editor's note: The wait is over! Now Buzz will have more hero moments as he helps his family through the difficult journey ahead. Please keep the donor family in your thoughts and prayers. Their sacrifice comes at a very high price for them. Gratitude is too small a word for this deed. We wish them peace.

Wednesday, September 15, 2010

Updates from Nicole


September 14, 2010

When 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 was possible, I thought.

I broke down into tears after reading that booklet. So many things were disturbing; the broviac, the many medications, the levels of rejection if her body didn't accept the new lungs. It seemed like she would lose before even getting started.

I've been living in the NICU now for 5 months. She already has a broviac, is currently on about 16 different types of drugs, has had several ups and downs, and has beaten all the odds with the help of her doctors and nurses. I'm starting to think that the NICU is our hazing. If you can make it TO transplant, you have a good chance of pulling through a double lung transplant. Wrenn has proven that she is UP for the test.

I feel like I have come full circle at this point. What I dreaded at that six week mark is what I now want to see more than anything else in the world. Her lungs are poison to the rest of her organs. They don't work, they never have worked and they are ONLY getting worse day-by-day. We have all accepted that she won't live without new lungs.

I have been told that once she takes that first breath after transplant she will turn a beautiful pink color. Right now she looks like a vampire. After transplant she will breathe easier and need less medications. She will be taken off of the oxygen and off of the vent. I will again get to hold her and see the dimples on her cute little face.

Last Sunday we almost lost Wrenn. It was a horrible sight to watch and I never want to relive that day again. After being paralyzed, Wrenn has done very well. She has stopped fighting the vent and is oxygenating in the 90's where she should be. It is hard to see her sleeping all the time but it's also a relief to have her stable.

During this last week they did a liver test, which came back normal, and a brain scan, which also came back normal. This is very good news and the tests show that her body is protecting the parts that are important. If either of these tests had come back with ugly results, she might not have qualified as a candidate for transplant anymore.

We have so many people praying for Wrenn and our family and I want you to know that God has sent us many, many blessings along our journey. Each day I am absolutely amazed at how well HE is taking care of us. Our guardian angels are very busy but have kept our spirits high as we continue to ride this roller coaster each and every day.


Wednesday, September 8, 2010

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 hill fast over the last 72 hours. Every little sound or touch angered her to the point of dropping from 85 to 45. This is NOT good and can affect her neurologically.

After watching these terrifying numbers fluctuate for several hours her doctor decided yesterday afternoon that she needed to be put on paralyzing medications. This is the ONLY chance she has to again be stable. An hour and a half later, Wrenn was finally back to oxygenating in the 90's. She is already quite swollen, will have a cathedore soon, is no longer getting breast milk, is still heavily sedated, and is on the highest vent settings possible. We really thought we were going to lose her yesterday but she has fought hard to stay with us.

We saw her latest x-ray, which is completely white. A normal, healthy x-ray should be completely black. There is not one spot on her lungs that works, it is truly a sad sight considering she is just 4.5 months old.

She has earmuffs on her ears to help with any sounds that might scare or annoy her. She holds her doggie in one arm and is resting on her back (for the first time in a LONG time).
We are not sure why she has a fever but a test called CRP was in the sixties, which means there is some inflammation somewhere in her body. Her fever around 1pm today was 102 but went down with tylenol. It has not returned as of yet and I PRAY it stays down. They had started her on antibiotics yesterday morning to nip anything in the butt. The biggest threat to her getting an infection would be from her broviac, which is a line that runs directly into a large vein in her chest.

The doctor has made it very clear to us that we have come full circle in managing her disease. They have literally used every trick in the book and cannot do anything else for her or the disease she has inherited. We desperately need lungs and I have been told they always seem to come just in time.

God, the time is now!



Update 9/8/2010: Wrenn's fever is gone. She had no positive cultures which is good news, but the doctors are being cautious and keeping her on antibiotics, just in case. The radius for a lung search has been increased to 1800 miles. It is now clear that Wrenn is nearing the end and really, really needs that lung soon.

Friday, September 3, 2010

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 through her broviac a couple of times a day.

The larger machines include a ventilator, N20, TPN (blood gases being monitored), and various cords taped to her chest registering vitals. It's madness in the room but when I look into her eyes I only see my beautiful little miracle, Wrenn. Sadly, after last week's infection I haven't seen her pop open her green eyes more than once a day. I haven't held her since last Monday. Due to the urging of my nurse, Angie, I decided to see how Wrenn would tolerate a little bonding since I knew we both needed it.

With everything I listed above, it took two nurses and a respiratory specialist to move her two feet and into my arms. Shortly after getting situated her oxygen quickly dropped from 95 to 40. They called in the doctor and realized she was pressed up against the side of her lung that is clogged, most likely from excess secretions. Once we repositioned her she recovered nicely. Then, thirty minutes later, she was gasping for air and her oxygenation again fell to the 40's. I found myself holding a Smurf and panicked as she struggled with each breath. It was the worst feeling in the world and probably the worst moment of her entire disease. She was blue, and I felt like I was strangling her to great discomfort. I asked to put her back and watched the nurses get her settled to a comfortable position. Within minutes her oxygenation returned to the 90's.

It is horrible, realizing that holding your daughter makes her miserable. I realize that sedation is necessary when warranted and that she is a very, very sick baby. Her lungs are not going to work, even in the very poor way that they do, much longer. So, I have decided that the benefits of holding her don't outweigh her health and this saddens me like you can't believe. There is nothing natural about seeing your child cry and just letting her cry until she is drugged back to calmness. Nothing is normal and it all breaks my heart. I keep praying that she will one day breathe on her own, one day cry over something for which I can provide comfort, one day swim in the ocean and just be a normal little girl. Days like today make me feel as though things are many moons away.

Helpless is how I have felt for many months. Now I am frustrated, angry and feel like I have hit rock bottom. I keep saying it's temporary. I pray for a tomorrow. I hope there's a next year. I really work hard to keep my head held high. The bottom line is, when Wrenn has a good day, so does Mommy. I always prefer the good days because the bad days are becoming unbearable.

Sunday, August 15, 2010

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. They had to increase her sedation because she was awake too much and working against the vent, which helps her to breathe. As I’ve said before, every day here in the NICU is a roller coaster. Wrenn's lung disease can show a great x-ray (nice and clear) in the morning and then the next day, it’s all hazy again.

The last few days she’s really enjoyed sucking on her binky and this morning got a massage with pretty smelling lotion. She did well and it made me smile knowing she can also have GOOD moments.

Getting to hold Wrenn is wonderful. It doesn’t last but an hour or two on the good days and the bad days I can only hold her hand or cup her feet, just little ways to let her know I’m there. Surfactant babies are moody and so sometimes noises, voices, patting and bright lights can alter her oxygenation.

I often visualize my daughter’s face without oxygen tubes or layers of tape. I long to hear her cry and look forward to her first coo. I picture us cuddling on the couch while Tanner plays with her little feet. I so want the normal surrounding without nurses and doctors hovering over her shoulder. So many little things to look forward to and yet they all seem so many years away. These are the special thoughts that get me through each day.

Life at the Ronald McDonald House has been good for Tanner. Every couple of days he gets mail from the volunteers; teddy bears and beanie babies. He puts them all in bed with Buzz. At the hospital he likes playing with the other siblings at daycare. I caught him holding hands with one girl named Trinity. He seems to like older women! He is Mr. Popular with the daycare volunteers and they look forward to seeing his bright smile. We try and limit his time there so we have family time too. Splitting hours between the two kids has kept my spirits up and gives us a little bit of normalcy.

From what I understand, there is little demand for infant lungs and so we are literally waiting for the phone call from a matching donor. Each day I pray that Wrenn remains stable. The nurses continue to do a great job keeping her comfortable. So far Wrenn is holding her own and I know all of your prayers and good thoughts are part of her stability! Xoxo!

Here is a photo of our temporary home:

We do get to have some fun, thanks to donors to the Ronald MacDonald House. They sent us to a Cardinals game. Here is Tanner in full-on Cards fan mode:

This is one of our best friends.

Saturday, August 7, 2010

Photos from St. Louis


Wrenn's New Home



Wrenn's Day Nurse, Beth



Close Up



Tanner's Art Work and Get Well Cards



Nicole Holding Wrenn - a Rare, Special Treat!



Wrenn in the Big Girl Crib



Wrenn with Mittens



Look at All the Machines!

Tuesday, August 3, 2010

Wrenn Update: August 2, 2010


Sent by Nicole Parris

If 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 that comes our way. Yesterday, Wrenn had a bad day, but today she was smiling at me and it filled my heart with hope.

The nurses in St. Louis have done a great job getting Wrenn back to the 'old Wrenn'. She's up and down, on sedation, feisty, gassy, spits up, and cute all at once. I think she's finally settled into her new home and is starting to get used to the now familiar faces.

We will roll with the punches as we wait for the perfect lungs.

Please know that your posts are read and mean the world to us. It is very obvious we are not alone. (((HUGS)))) Nicole, Jason and Tanner

Thursday, July 29, 2010

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 July 4th to deliver Wrenn's beautiful sign. Not only did she make one for Tanner, she made several inspirational magnets for the nurses. It's a wonderful way to remember Wrenn and our family. I can't wait to bring Wrenn home and decorate her nursery, which will include her sign made from Las Vegas, artwork by Tanner and all the well wishes while in the NICU.


On the same day that Debbie delivered her beautiful signs, Nicole Neufeld stopped by and posed for a picture with Wrenn. It was great to finally meet. We both felt like we had been friends for many years and not just weeks!


The Amazing People at Winnie Palmer Hospital

Nurse Kristi and Respiratory Specialist Vanessa with Wrenn who is 13 weeks here.


Respiratory Specialists: Also known as my therapists and cheerleaders. They were great and really comforted us as we waited for the news of Wrenn's lung condition-- Ann, Micki, Julie and Perri

Ann's sister knitted a beautiful baby blanket for Wrenn and gave it to us the morning we left for St. Louis. Can't thank you enough for thinking of us-- God bless!


Two of Wrenn's night nurses: Aunt Carol and Theresa. I slept soundly knowing she was in your hands each night but the circles under my eyes never went away! Thanks again for the CD and onesies but for especially rocking my girl to sleep when I really needed to get some rest.


Being put on the vent pretty much killed Wrenn's therapy sessions for sucking on the binky. But I'm sure that all of Meredith's sessions left a lasting impression.

Patti, on the right, is on the transport team as a respiratory specialist. She rocked Wrenn many, many times when I was unable to do so myself. She also spent several moments holding my hand on really rough days. I miss our talks, Patti. HUGS!


A snapshot of Tanner, Chaplain Gail, Vanessa, Ann and Uncle Collin.

Gail baptized my husband as well as Wrenn in the first two weeks in the NICU. Gail's purpose in our lives was introduced by a higher power when she gave us Nicole Neufeld's phone number; the six degree type of intervention will forever give me goose bumps on how we all happened to meet. One day it will be a great story.


Back to St. Louis


We now return to St. Louis.... where Tanner is adjusting well, playing with the play kitchen at sibling day care:


We never forget the reason for this blog... the one thing that has brought us all together. Here she is: Wrenn asleep.


Wednesday, July 28, 2010

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 games with Tanner or visit with other families over a cup of tea. In many ways we already feel settled even though our future residence is still unknown (we are on the list for the Ronald McDonald house but the list is long). On the 8th floor there is an outside area to get some sun and take in the view of the city. Since most of our time is spent indoors, this is a place I visit often to help catch my breath.


The flight was bumpy for Wrenn but the doctors at the NICU did wonders getting her stable those first 48 hours. I was unsure about how she'd do on the trip and say what could have been a real goodbye back in Orlando. I think it will take a lot more than that to knock down my little firecracker. She is still fighting hard and is making us proud at how well she has transitioned to her new home.

As our roller coaster ride continues, I am thankful that we are surrounded by such wonderful nurses and doctors here in St. Louis. They have already learned that Wrenn is feisty, which I am told is a good thing if you are in need of a transplant. I'm sure the nurses will be experts on Wrenn's personality very soon! :-)

Wrenn was switched back to the ventilator this morning and is stable. She is still on minimal sedation but continues to open her eyes and memorize new faces and voices. She listens to her CD's, some familiar (like the one Aunt Carol gave her back in Orlando) and some new (a CD from Jaimie; a nurse we had the first few days Wrenn arrived). :-)

If possible, I hope to hold Wrenn in the next few days. I am cautious and don't want to do anything that will upset her. I rely on the nurses to advise me on this when the time is right.

Tanner is enjoying his time in the sibling daycare room and visiting his sister's new private room. One of our new friends, Liz and Dan, based here in St. Louis, brought Tanner some books and toys to our hotel. I cannot thank them enough for taking the time to do this. You guys are awesome. :) HUGS


Wrenn received your cards and letters this week. As usual, the prayers and kind words always come at my darkest moments. Please keep praying for her lungs to heal, answers to come our way, and of course, the perfect set of lungs, should that be her path.

Jason and I feel the love and support from everyone involved and we thank you for carrying us through this difficult road. I will update as you as time permits. :-) I want to again thank Lisa M. and Nicole N. for everything they have done for our family and this blog. ((((HUGS))))

Sunday, July 25, 2010

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 AM
Wrenn had a rough flight as do most surfactant babies. Their lungs are heavily affected by changes in altitude, which make it difficult for the transport team to keep their CO2 levels low.
Once Wrenn arrived in St. Louis, the medical team had to stabilize her. Her hemoglobin level was low and her CO2 level was the highest it's ever been. She was placed on an oscillator, which is a large machine, more powerful than a ventilator but gentler on the lungs.

The medical team has done a lot of blood work on Wrenn, but first they put in a Broviac line for easy withdrawals. She did great during and after that surgery. To help raise her hemoglobin level and lower her CO2 level, Wrenn was given a blood transfusion. She will receive more transfusions during the transplant process.

The NICU team has been very methodical in how they've treated Wrenn. Their goal is to take a critically ill baby and bring her to a stable condition - keep her comfortable, stable, and make sure all her other organs are working well. This includes her heart, which now beats at a much slower rate (90-140).

The goal of the NICU team is to wean Wrenn from the oscillator back to the ventilator, and if possible, back to the Camula flow like she had in Florida before she needed the ventilator. However, the odds of doing this prior to transplant are not good because during the trip she once again developed Persistent Pulmonary Hypertension of the Newborn (PPHN). This often happens during a traumatic experience. I am told this is due to her lung problem as is her enlarged heart. Post transplant, both conditions will hopefully disappear.

Liz, a wonderful woman, and her husband Dan, met Wrenn today and also delivered some toys to Tanner to play with that their two boys enjoyed when they were little. I met Liz through my friend Pam who has stood by my side throughout this entire ordeal. Liz's father is a transplant surgeon in Houston,, so she knows about what we are facing. I want to thank her for taking the time out of her schedule to visit us at the hospital, and for thinking of Tanner who is also struggling to adjust to his new environment. (Lisa's note - just take one look at his face. It speaks a thousand words.)


July 25 9:12 AM
I'd like to say a word of thanks to Nicole Neufeld, who had a Fay's Friends gift bag waiting for us in Wrenn's room. I'll take a photo so you can post it later. I also owe you material about Debbie's beautiful signs and Nicole's visit to Orlando. I haven't even cracked open my laptop yet but I will in the next few days.

July 25 9:53 AM
Everything is so methodical here. It takes the emotion out of it somehow. All business with one common goal. It's crazy.

July 25 11:50 AM
News flash. Just met a dad two doors down whose daughter is being tested for a surfactant deficiency. I'll give you more information as I hear. It's a freaking epidemic.

July 25 10:02 PM
The photographer took pictures of Wrenn today. They do this for parents when kids enter and leave NICU. I'll load those tomorrow. Wrenn had a better day today. She is moving around her. 90% oxygen. Not as swollen and doing well with feedings.


I hope Nicole doesn't mind my posting her texts. But I think it's important for people to realize what a typical day is like for her. Finally, I'd like to share some photos of Wrenn's present world with you. Welcome to her room.


And now, please observe a moment of thoughtful silence, prayer, and/or communion with the universe to appeal for help for what rests peacefully, for the moment, inside.


Rest well, sweet Wrenn. We love you so much.

Friday, July 23, 2010

Welcome to St. Louis Wrenn Parris, and Golf Tournament Recap


(This post was written by Lisa Macon)

The past week has been an emotional roller coaster for the Parris family. I'm sorry that I haven't posted more regular updates. I feel as if I'm always waiting for good news, and by the time there is more news, good or bad, the old news seems really old. But I hound Nicole and Jason for news constantly, so that I can pass it along, and I do want to share the details.

Here is the sequence of recent events:

Preceding weeks: Wrenn's breathing began to deteriorate slowly. At one point she'd been on 7 liters and about 78% oxygen, but her need for oxygen began to increase to the point where she was back up to 8 liters at 99 percent.

Saturday July 17: Wrenn's Golf Tournament was held at North Shore Golf Club in Orlando, FL. It was a resounding success and some pictures are displayed at the end of this post. Over $10,500 was raised to help pay for Wrenn-related expenses.

Sunday, July 18: Wrenn's breathing deteriorated to the point where she could no longer breathe without the help of a ventilator. On this sad and difficult day, Wrenn was sedated and strapped down as the breathing tube was inserted down her throat. No longer can her parents hold her or see her smile. On the plus side, her color is much better and finally her poor little lungs can rest and let the ventilator do the work for her. Here is a picture of Wrenn, very different from the ones you've seen posted on this blog up until this point.


Tuesday, July 20: The St. Louis Children's Hospital Lung Transplant team approved Wrenn for evaluation. Wrenn's Lear jet was scheduled to leave Thursday morning. Her parents quickly threw their necessary belongings together and planned to leave as soon as they saw her in the morning to say goodbye. Here are some photos of the card the medical team at Winnie Palmer Hospital lovingly made for Wrenn. We are pretty sure just about every hospital employee signed it!


Thursday, July 22: Nicole, Jason and Tanner left in the morning for the 16+ hour car ride from Orlando to St. Louis. Wrenn's jet took off in the early afternoon. The Parris family stopped around midnight at a hotel. Here is Tanner and Buzz watching Toy Story in the car. (Tanner, by the way, was an excellent traveler!)



Friday, July 23 (Today): Jason, Nicole and Tanner arrived in St. Louis at about 1pm. They are currently meeting back up with Wrenn and, I'm sure, getting to know doctors and medical staff at the new hospital, as I wait anxiously for news.

Please stay tuned via the Facebook page (link to the right). I will try to post regular blogs every couple of days with details, but breaking news is easy to put up quickly on Facebook, anytime, from wherever I may be.

"I met my husband 17 years ago. We have played together in many a charity golf tournament. Never in a million years did we think we would be on the receiving end of one." -- Nicole Parris

It is easy during trying times like these to feel nothing but despair. But I don't. So many people are helping this incredible baby - it's enough to restore anyone's faith in the kindness of their fellow human beings! At Wrenn's Golf Tournament on July 17, nearly 30 teams of golfers came out to play in support of Wrenn. 22 local business sponsored holes on the course, and over $7000 worth of goods and services were donated for raffle prizes. Jason and Nicole both gave emotional speeches of thanks to the golfers at the luncheon/raffle after the tournament. Here are just a few snapshots of this wonderful, inspirational day.

The players enjoy lunch, donated by Nature's Table, following the tournament. In the background, you can see some of the many prizes that would soon be awarded:


Jason played in the tournament with his many, many friends. Here he is with some of them (Bob and Carey, plus Tanner):


Another team of golfers (Dean, Greg, Joe and Dave):


The Red Bull team, a big donation giver for the day:


And yet another team. I don't know who that second guy on the right is, but he sure is cute! (Just kidding. It's my husband Brian with his teammates Mark, Mike and Rob.)


Marshall English customized a "Wrenn" painting of a hole at North Shore during the raffle drawing. Please see his website (http://marshallenglish.com) to purchase one of these gorgeous works of art! Remember that a portion of all proceeds provides assistance to Wrenn's family.


Jason and Manny, who I was told "gives Jason and the other guys my money every week!"


My kids and I working the raffle ticket sales as final team scores are posted in the background:


There are many more pictures from this wonderful day, and I will sprinkle others in the posts in upcoming weeks. For now, I would like to send out a HUGE THANK YOU once again on behalf of the Parris family to Lee Siske who organized the tournament and to everyone else who helped in any way big or small. A charity golf tournament is a great way to raise funds but even by usual standards, this tournament was a huge success, and that is no surprise to me. Wrenn is a very special baby and she and her parents are well loved in our community. While it saddens us that the tournament took place on the last day Wrenn breathed without a ventilator, it was a very special day and the proceeds will help her parents make it through the next few months.

That being said, the road ahead is still long for the Parris family, and even this great fundraiser won't support them throughout the entire journey. Please pass on word about Wrenn to everyone you know so that they can help in whatever way they can. Thanks for reading and for keeping Wrenn in your thoughts and prayers.

"I would like to tell you a little about Wrenn. She is a very special girl. She has never known any life other than the one she has lived in the hospital, but she smiles at us all day, every day." -- Nicole Parris
 

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