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.

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.

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.

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.

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.

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!

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