Peas, Blueberries, Chicken Soup, and the Unknown

Sent by Nicole late on 2/27/11

What do peas, blueberries and chicken noodle soup all have in common? Wrenn loves them more than squash or green beans. She has done another 180 degree tyrb and I just can’t explain how or why but apparently God heard me every time I connected her G-tube button to the feeding bag; “Please make this child love food and start eating,” I would chant.

Last week Wrenn made great strides and is now eating every two hours. It appears as though the breast milk is being absorbed quickly and that leaves Wrenn with a hearty appetite in between G-tube feeds. On average she eats 4 -5 jars of baby food a day and hasn’t had any issues. She doesn’t gag, has little to no gas, and quivers her lip if I take it away too soon. I’ve been showing her sign language in the hopes that she’ll communicate like Tanner did before he started talking.

The OT specialist was shocked when she worked with Wrenn last Friday. And of course, I’m always amazed week to week. Wrenn even munched on a Ritz cracker and did fine.

With such absorption, we are increasing her rejection medications quite a bit. The transplant coordinator told me it’s not unusual to be on twice the normal amount when a diet has drastically changed like Wrenn’s has with solid food. Once we run out of breast milk she will be on Ensure and so the digestive tract will again change along with the levels.

Wrenn is still not sucking but the therapist thinks she’s VERY close. That will be a huge day of celebration for us!

We chose to do the transplant so Wrenn would live as normal a life as possible. No cords, no plastic contraptions, basically no strings attached; that includes the G-button, which is GREAT to have while learning to eat but I want her to be all baby.

I asked the transplant nurse what she suggested about how Wrenn should take her medications once she is sucking and eating like a pro. She suggested that Wrenn take her medications by mouth as soon as possible so she gets used to the icky taste. Food and medications are absorbed differently when given by mouth as opposed to the G-tube and so it’s going to be a couple of months before she can take all of her medications twice a day. Once Wrenn proves she can eat, gain weight and swallow medications without any problems, the G-tube is history.

Right now we are down to eight medications in the morning and three medications at night. We have just three plastic cups holding the medications and I can draw them up in my sleep. Tanner is very helpful at pushing her medications through the G-tube line and is interacting with Wrenn more and more every day. He tickles her and even says, “No Wrenn” when she starts pulling on her cords. I love when they sit together and play. Everything seems normal and perfect. I want it to be perfect forever. Those are the times I ask for a guarantee. The sweet moments scare me because soon after, I feel this awful gut wrenching punch of the unknown and then I feel complete sadness. It’s so hard not going there and it will always be near the front of my mind. How could it not!

Wrenn is getting stronger in her trunk and can just about pull herself to a sitting position. I feel once she masters this developmental milestone she will be crawling very soon. The other thing she started doing last week is putting weight on her feet and even stands like a big girl for a second or two (with help of course!) All things she wasn’t doing a week ago.

Wrenn’s upcoming profusion test, X-ray, bronc, monthly infusion, CT scan, eco and labs are scheduled for March 14^th and 15^th. As soon as those results come back the team will determine when to take out the broviac and surgically insert the port.

A Plea for Emily

Can Wrenn's friends please do me a favor? There is a girl named Emily Wilson.

Emily was diagnosed with Ewings Sarcoma of the skull/brain in Feb. 2009 when she was just 10 years old. After 2 brain surgeries, 14 rounds of chemotherapy, and 6 weeks of proton beam radiation, she enjoyed one year of remission. She was recently diagnosed with a recurrence. We pray for strength, courage and healing for Emily. If you can donate, please do so here:

http://www.emilywilson.myevent.com/

And even if you cannot give, please learn about Emily and like her Facebook Causes page to help spread the word:

Emily Wilson: Strong and Courageous

Thank you so much!

In Wrenn Time

Sent by Nicole 2/14/2011

The one thing I know from this entire journey is that I don’t like to look back and I certainly don’t want to GO back. Going forward has been much better and I feel myself getting more selfish every day. For many months Wrenn was very sick in the NICU and then recovering from major surgery. Now she’s my 10 month-old baby girl, who I want to be normal in every way possible. It’s what every parent wants when they hear they’re going to have a baby. "Healthy" is what everyone hopes. I look at Wrenn’s tiny toes and they remind me that she’s still a little baby. It feels like she should be 4 years old by now. She also possesses a maturity about her that I can’t quite explain. She’s been through so much and pretty much did it all on her own. I can’t even imagine taking credit.

I ask God every night (with Tanner’s help) to continue healing Wrenn’s lungs. I also ask that she eat on her own so we can discontinue feeds through her G-tube. The therapist continually reminds me that Wrenn is really three months younger. (Around 6.5 to 7 months old). She was born four weeks early and then spent two full months practically unconscious. The therapist assures me that all developmental milestones will be accomplished but in ‘Wrenn Tme’, and that Mommy must be patient!

In the last four weeks Wrenn has had ups and downs in her therapy. She decided after two weeks of trying baby food that she was done. She wouldn’t open her mouth for anything and if it meant turning blue she was okay with that. She would smirk and it cracked me up. I swear she’s MUCH older than 10 months. TOO SMART! The therapist said to quit giving her baby food. This depressed me because I wanted it all to work out nicely. I wanted to move forward but the therapist said that sometimes you have to take a few steps back in order to go forward. (How many times have I heard this???--Ha Ha). This made sense to me and even the therapist could tell that we were BOTH getting frustrated and needed a break.

The next thing the therapist suggested was that we take another look at the volume she was getting from the G-tube feeds. At the end of each feed Wrenn gagged and cried, so we cut back on the amount but added a feed at midnight. (We are hoping this increases her weight to where it was.) According to Wrenn’s doctors in Clinic, she must gain or maintain each week since her body is still healing.

The next thing that happened was a miracle, I think: Timing is everything, I now realize. Wrenn was getting her four front teeth and started chomping pretty hard on teethers and anything else that would fit into her mouth. I capitalized on this and presented a baby bottle, which she actually loved. She chews on the nipple and the milk slowly escapes and she doesn’t gag or choke on it like she did four weeks ago. AMAZING in itself that she WANTS to drink and LIKES it. We've even given here Tylenol by mouth a few times and she did great! The therapist is working on getting her to suck the bottle now, which is extremely important for the rest of her development, including learning to speak. It all ties together, the therapist explained. Apparently, skipping natural developmental steps isn’t a good thing.

So last Friday night the therapist was amazed at Wrenn’s progress in just two weeks. Wrenn welcomed baby food with a spoon, and then didn’t mind any type of stimulation in or around her mouth. The therapist felt that Wrenn would be eating sooner rather than later. This made me smile and I felt like we were finally making progress.

Wrenn is also getting stronger through her trunk. She sits up for long periods of time, rolls all over the floor, but the biggest thing is that she reaches out for her toys. Before, she was more motivated by people, their voices, and their facial expressions because that’s all she knew from birth. Now she wants everything we hold in our hands. She grabs for Tanner’s toys and is especially excited about cell phones, which is a BIG NO-NO, since they carry germs. Her aggressive curiosity might cause her future illnesses or rejection.

The therapist said the biggest thing that Wrenn has going for her is that she is very interested. She is a mover and a shaker and WANTS to run before she walks. The therapist said that some babies don’t show that burning desire and so their therapy slows. I’ve been told from the beginning that girls are the best fighters. Wrenn is a good representative.

There is one thing that Wrenn does NOT like and that’s when I try to hold her hands. She pulls away in an untrusting manner. This behavior came from living in the hospital where she associated touch with negative actions like being held down when the nurse put in an IV, or when they changed her broviac dressing, which hurt because they had to pull the tape off of her chest. (The dressing is still changed every 5 to 7 days here at home but we place toys in her hands and she no longer cries. The therapist said to take her hands and caress them so she starts associating positive touch.

Keeping Wrenn germ-free is proving to be our biggest challenge and I’m still not sure how we’re going to live in a bubble. It’s very difficult with Tanner but I keep thinking it’ll all work out somehow. Again, I try to forget that I can’t plan too far ahead. The future is so unknown that to have it all figured out is lying to myself as well as the rest of us. One day at a time. One cold at a time. One flu season at a time. Just let her heal and develop, I whisper to myself each day.

Wrenn has recently discovered that Mommy sometimes leaves the room. It doesn’t take long for her lower lip to quiver and then she cries. It makes for a tricky day. Even in Daddy’s arms she stretches her neck in search of me with pouty lips.

Monday Wrenn has Clinic. She’s do for immunizations. On Thursday she’ll receive her monthly infusion, which boosts the immune system to battle flu season. I was told that the broviac will probably come out in the next couple of weeks. The surgeon will put in a new port that can be accessed underneath her skin. Like the broviac, we could have potential issues and there’s some maintenance we’ll have to learn.

Tanner’s been great! He loves interacting more now that Wrenn’s sitting up and grabbing for toys. He randomly kisses her on the head and when she cries he says in his little mousy voice, “You’re okay, Wrenn.” When I lay on the floor beside Wrenn he shoves his pillow underneath my head and spreads out his Toy Story blanket over us. He then joins us on the floor and starts giggling, which makes Wrenn smile and then the two of them totally melt my heart. Time stops in these moments, they are all priceless.

Not every day is an easy day. Not every day is a hard day. But every day is certainly a mystery. And for Wrenn, everyday is a gift! To everyone on this blog, we continue to thrive from your support as our journey continues. Our extended web family is just as important to us as our new family of doctors here in St. Louis. Your prayers have and are always answered, in Wrenn time.

Wrenn Update January 27, 2011

Sent in by Nicole.

Wow! After just one week—I pinch myself when I look at Wrenn and the progress she’s made. Monday, at her clinic appointment, I got the feeling Dr. Michelson felt the same way. She sat up by herself on the table, smiled, cooed and looked as if life was great as she kicked her feet, showed off her strength and won the hearts of everyone in the room. The broviac dangled out from underneath her cupcake T-shirt but the G-tube was well hidden. Other than those two necessary medical items she looked like a normal, 9-month old baby girl.

The biggest difference I’ve seen in Wrenn is that her overall irritability has vanished, along with one of her most potent narcotics called Ativan. It’s one of the hardest to wean and when that ended, my little angel stopped taking long naps, started sleeping through the night and needed little to no consoling. She has two more major wean medications left, which end in mid-February. I can’t imagine how much more alert she’ll be once those disappear. It’s been so long (Florida!) since I’ve seen the REAL Wrenn without sedatives that I’m learning her all over again. What I can tell you is that she’s all there! She’s feisty, strong, smart, impatient, an old spirit, happy (99% of the time—except when she’s having gas), and eager to run. I see so much of Tanner in her that I can’t believe they are a little over two-years apart. Tanner barely napped, studied things to the point of furrowing his brow and took in EVERYTHING.

Wrenn is doing much better with her feeds, which are now every four hours. Her gut has a nice break, she seems much happier and playtime is more productive. I still feed her baby food but it’s hit and miss. Some days she’s on board and other days her lips are so puckered that nothing’s getting through. What has greatly improved is that she loves her binky, sucks her fingers and puts every object to her mouth for a taste test. (Everything but my spoon full of food, that is).

The other day I entered her room and she was on her tummy, sleeping. This was the first time she rolled over on her own and it amazed me that she can do this with all the cords underneath her belly. I guess they bother me more than they bother her.

As you already know Wrenn had her sixth bronc since transplant: The results, no major infections and NO rejection. Our next procedure is in March. She also got an infusion called IGG. In a nutshell, the rejection medications suppress her body to the point of NOT rejecting her new lungs but not TOO much to lower her immune system to the point of catching every bug. A normal IGG level for a baby her age is between 300 and 1000. Wrenn has been steadily falling to 175 since before discharge. The cure is getting a blood product to help boost her system. She will receive blood infusions once a month throughout the cold/flu season and maybe even into summer, depending on her levels.

Wrenn is proving to be the nagging little sister. She lights up when Tanner gets anywhere near her, tries to grab his toys from his hands and touches him in amazement when they’re on the floor or in our laps. He really is her best therapy and she watches him all day long. She’s trying to keep up with his fast pitter-pat by tucking her legs up underneath her belly in an attempt to crawl. It won’t be long now before I’m chasing them both around the house.

Last week the eye doctor dilated Wrenn’s eyes and gave her a clean bill of health. He said the muscles are much stronger now and she no longer needs a patch. This was a great relief, avoiding another surgery. Her progress is going in the right direction and we feel extremely blessed.

I couldn’t finish my update without including the story of the week! The biggest hiccup we encountered over the last 10 days was three little trips to the Emergency Room within a 12-hour period. Wrenn’s G-tube was yanked out. In an hour- long classroom we were taught how to replace the G-tube but that was in a controlled environment and the patient was a doll. In the REAL life situation there was blood, a screaming baby, a gapping hole and food oozing out everywhere. It was not an ideal situation for two non-medical parents. In the heat of a panic attack I did what every person has been taught to do when you don’t know what to do-- I called 911……And the person on the other line asked me what a G-tube was!! HaHa. REALLY? So we headed to the ER.

Six hours later we returned home, fed Wrenn her night feeding, and when we woke up to do her morning feed, saw that the G-tube had this time deflated on it’s own. Even though we were prepared to put the G-tube back in place, the hole to her belly had sealed up (to our eyes). So we head back to the ER because there was a chance that the surgical team would be called in. Luckily, the doctor on call, (along with a lot of pressure) replaced her G-button.

We returned home and then two hours later I restarted her feeds. She screamed bloody murder and after too many minutes of wondering what was going on I called the ER — they told me to bring her back. Six hours later an X-Ray revealed air in her belly and intestines. It took a few days for her to pass the air but she has since recovered. (I’m not sure I have!)

You now can understand why I work so hard in teaching her how to eat by mouth. I want love the G-tube to disappear sooner rather than later. It’s just another thing to worry about, and as she gets stronger and older, she’ll be yanking it out on her own.

We are still giving her 12-13 medications a day but she’s only getting them four times a day instead of every three hours. This has really helped our situation in getting to her therapy sessions, play time, and overall care. Oh, and we’re actually getting some sleep now. By February we will have two more medications gone (Morphine and Clonidine) and working on a third (Lasix), which she’s been on since the NICU in St. Louis. For the rest of her life she’ll be on 4-7 medications a day but will only receive those twice daily, which is a transplant norm.

I wish everybody could see Wrenn in person. I can’t believe how often I have to catch my own breath as I watch her strong spirit soar. Especially when I know where we’ve come from. Many days it feels as though she’s been at home with us since birth. Only pictures remind me of where we were but her smile reminds me of where we’re going. God has blessed her in so many ways and I just hope the blessings continue. I thank Him every day for my two little miracles and ask that Wrenn never again experiences rejection. I also ask God to give me the words to thank her donor, who I think about every single day as she takes in each breath. I don’t know if I’ll ever know how to start such a letter. In some ways I hope the family contact us first. I’m sure when the time is right the answers will come. They always do.

I sent Lisa some home videos of the kids playing together. It brings tears to my eyes to see them playing as siblings. Now that she’s sitting up on her own Tanner interacts a lot more. He wants to show her everything but SHE wants to do it herself. Ahhh, the rivalry has begun. It’s a place I never dreamed we’d get to but we’re here—and loving it!

Here's one of the videos Nicole sent me:

Wrenn pounds on her piano, shakes her baby rattles, and squeezes her softball. She sleeps through the night, coos herself to sleep and smiles almost all day long. I’ve never known such a happy baby. Seeing her face light up when I get her out of her crib in the morning is priceless. She seems to feel right at home and so do we.

The beauty queen herself

The happy family. At last!

Three Weeks Later

Sent in by Nicole on 1/13/2011

Three weeks later we are finally settling into what the doctors told me would be ‘our normal’. We are perfecting a better, more familiar routine but still find Wrenn a mystery as we study her habits, wants and needs. Sometimes I can’t tell if she’s just fussing because she’s a baby, looking for attention, having withdrawls from the narcotics or has a real medical need. This situation continues to stress me out as we translate each cry. The hardest part is comforting her at night. Many nurses would pat her butt to help coax her back to sleep; knowing when she needs to fall asleep on her own is hard to pinpoint when you’re not sure if she’s having gas pains, intestinal issues, or just plain hungry. Because she feeds from a G-tube, she can’t refuse a bottle. It’s so difficult and frustrating at times, especially when we want to give her the world and make every thing better as she continues her recovery at home. We are often left wondering if certain types of attention is starting up those bad habits we’ll be trying to break several months from now. (Maybe I need to contact Nanny 911).

I’ve been very careful tending to Tanner’s needs but also include him in her care as much as possible. He retrieves her toys, throws away diapers, turns on and off all her medical equipment, places the nebulizer mask on her face and loves pushing a few medications through her g-tube button. I want him to feel a part of her care and realize that he’s part of her life and not just watching us do everything that needs to be done without his participation. I am impressed at his kindness and he seems to be adjusting just fine to his little sister. At night it feels awesome congregating in the living room together. We had spent so many evenings apart as a family, which was very difficult. Leaving one child in the hospital to go home and tuck another one in bed kept me on a terrible emotional roller coaster. I’m hoping those days are gone forever! Both my babies are finally where they belong: under one roof with mommy and daddy!

Wrenn continues to watch Tanner’s every move. He truly never stops and will probably be her biggest inspiration in how quickly she learns to crawl and walk. This week in therapy she started moving her legs up underneath her butt, in preparation for crawling. I am amazed each week how much stronger she gets and can’t wait for her to catch up. She will be chasing Tanner around the house before long and I know, holding her own! Spending eight straight months in a hospital bed made her legs weak and so we do exercises at home to help build those muscles. So far she is progressing and showing interest in gaining more independence.

As far as her health goes, she will have another bronc next week. The one she had just after Christmas didn’t result in large enough samples to show if there was any rejection, so they are going to try again. If all looks good we won’t have another one until March.

One test showed a small bacterial infection in her lungs. Treatment is inhaling medication through a nebulizer twice a day. We will continue these treatments for a month, just to be safe. Luckily she enjoys the mask and does great. I also give her chest PD three times a day to help open all areas of her lungs; this is light pounding on several pinpointed areas to keep secretions from settling into the lungs that might cause poor oxygenation.

Right now we do labs once a week, clinic once a week and therapy twice a week. The days go so fast that I’m drained by mid-afternoon. I literally go from one child to the next, making sure both kids get equal attention. Unfortunately my own needs suffer. I eat when I think about it or if someone else makes the meal. I have to admit, protein shakes are my best friend right now. I sleep, but lightly, because I’m always looking to keep Wrenn comfortable and on time with her medications and treatments. The good thing about our situation is that I’m an extremely organized person. God must’ve thought I could do all this and so far I’ve proven that I can. As I hear about other children preparing for liver transplants or even lung transplants I’m thankful that I’m past that stage. The waiting was the hardest part. I wouldn’t want to go back in time at all. Once through was enough for me!

I thank God every single day for my two beautiful kids. I continue to ask for strength in getting everything done on a daily basis. I ask Him for patience, guidance and more time. I pray for the other families going through similar situations.

Wrenn is doing much better on taking food via mouth. She likes a variety of baby food and doesn’t gag at the sight of her binky. She is playing with her feet, sucking her fingers and chuckling out loud. Her hair has lightened up a bit, appears to be curly and is coming in much faster now that she’s home. She is 27 inches long and weighs 16 pounds 2 ounces. She loves her swing, vibrating chair, being held and lying on the floor with Tanner. She clings to her bunny and puppy each night while sleeping. What I love most about her is her smile. Across the room you can smile and she always smiles back. She loves people and even smiles behind her mask when we enter the hospital.

For an hour a day, Wrenn wears an eye patch to help align her right eye. After coming out of the paralytic drug her right eye had become weak. Placing a patch over her eye will help strengthen the muscles. We have an eye appointment next week and will know if she needs surgery or more time with the patch.

Like you, I look back at some of the photos on here and can’t believe how far Wrenn has come. Tanner was just a little over 2 years old when Wrenn was born and now he’s 3. A lot changes from 2-3. It’s still so hard to believe that we’ve been doing this since April 14^th.

Wrenn spending time with Gigi.

A beloved gift from Nurse Aunt Carol in Orlando.

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 30^th 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!

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.

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 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 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!