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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!


Just me on December 25, 2010 at 6:24 PM said...

I can't imagine how much stress this must be putting on you, but it really sounds like you're doing an amazing job. You're incredible, and your faith throughout everything has been an inspiration to me. Like you say, it'll become like second nature, and you can see how much easier it's already getting with the shorter time taken to prepare everything.

Keep going Nicole, and Happy Christmas! x x

Anonymous said...

I am so glad she is home with you, Jason and Tanner, I guess you did get your Christmas miracle. I wish all of you a very happy and stress free New Year! You have alot of firsts coming up and it will be wonderful watching your little girl grow and learn all the things a normal toddler learns. She is beautiful Nicole and I sincerely wish you all the best of life!!!

Your friend always,

lilsophie on January 10, 2011 at 11:21 PM said...

I found your blog because I did a search for St Louis Children's Hospital and Broviac line. I was looking for anyone that I could read about their experiences.

Your little Wrenn is so precious! She seems to be adjusting going home well. I love her smile. And Tanner is adorable.
I can totally relate to your feeling of being overwhelmed. I have a little 11mo old girl that has medical issues as well. She needs a liver transplant, but is too high risk to be added to the list at this time because she's failing to thrive. So we just had a Broviac line put in last week at Children's. She's also had open heart surgery with Dr Huddleston (man of few words but an EXCELLENT surgeon. ) Dr Dillon did her Broviac. If interested you can follow her story St Louis Children's Hospital is a great place. I hope they are treating you well.

I read that your originally from FL. So if ther is anything you need to know about St Louis. Restaurant, groceries, or any kind of distractions or entertainment for you, or Tanner or whatever please don't hesitate to email me - I can't imagine going through what you are and being so far from home. I would love to help you out in anyway I can.

Strength, healing, peace and comfort to you and your family! It may feel like things are out of control, but your making great strides to organize this new life that will become routine eventually.


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