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.