We Now Have a Tubie!

We Now Have a Tubie!!

So, how about I totally drafted and typed a blog entry up while I was in the hospital with Elizabeth AND I forgot to hit "Publish."  Oops, sorry!

Since this will be old news for many of you that follow me on Facebook, I'm just going to summarize our hospital stay.  I'll recap highlights, etc. and give you a bit of insight as to how our first (almost) two weeks at home have gone so far. If you don't follow me on Facebook, feel free to find me there. You will find me as "Tara Bly Hackwelder."

Anyway, Elizabeth had surgery on Monday, March 30th to have a G-Tube/ MIC KEY button placed in her stomach.  Dr. Austin was her surgeon at CHP, and she was amazing.  I was grateful that Holly, my mom and Pastor Joe were able to come down and spend the morning with Jason and I as we waited for our precious girl to get out of surgery.  The waiting is always the hardest part.  (Tom Petty hit the nail on the head on that one.)  I was especially beginning to become nervous as the time kept ticking by and we weren't getting any news.  I especially became nervous when it became longer than expected and still had not heard anything.  Eventually, Dr. Austin did come out and she said that Elizabeth did very well during the surgery.  We were all very glad to hear that.  Dr. Austin also mentioned that she had found a small hernia while operating on Elizabeth.  She said it was not enough of a concern for her to repair it at that time, but it would be something that we will need to monitor over time. We all thanked her, and then we sat and held hands as Pastor Joe led us in prayer. We prayed for healing, for peace, for guidance and strength.  All things that we needed then, need now and will continue to need in the future. 

On a complete side note, we all got a good laugh that day over Jason's name tag.  It was horrendously misspelled, and the woman who registered him even took his name off of his driver's license, which is correct.  Here is a picture for your enjoyment!

They allowed us to see Elizabeth in the recovery area, and then they eventually moved her to her room on the 6th floor.  Jason went home in the afternoon, and Holly and my mom stayed with me.  Holly left in the evening, and it was just mom and I. We watched Elizabeth as she slept most of the day.  We talked to her nurses and met with Sarah from Child Life.  Sarah came up to meet Elizabeth and enroll her in the Beads of Courage Program.  This is an amazing program that enrolls children with various medical and special needs and awards them different beads for different milestones, treatments, procedures, etc. that they have had done or that they experience. I have heard of Beads of Courage, and I was very excited that Elizabeth was going to be enrolled in the program.  Elizabeth is the bravest girl that I know, and she is certainly full of courage. Sarah gave me some paperwork to fill out, and she said that she would be back on Wednesday to give Elizabeth her beads.  

It was a rough first night.  Elizabeth did not want to be held.  She cried, which she almost never does, because she was in pain and uncomfortable.  She threw up in the middle of the night.  The nurses were doing everything possible to help keep her comfortable, but she had not eaten since Sunday night and was continuing to take medicines to ease her discomfort and pain.  Pain meds and an empty stomach don't mix well.  They were giving her IV fluids, and they were planning to start her first continuous feed of Pedialyte from Tuesday evening until Wednesday morning.  If she tolerated that well, then we would be able to start to gradually work up to a full diet.  

We continued to struggle with pain Tuesday and Wednesday.  It was miserable for her and miserable for mom and I to watch her cry.  She did not want to be held, but once they started her on the Roxycontin for pain it helped her to want to be held for small periods of time.  Cuddling is a miracle drug for mommies and babies, and I do feel that it helped her.  We started to gradually work her up to a diet of Pediasure and pureed foods.  She did not want to eat anything by spoon, and at most she had a few spoonfuls of strawberry and banana yogurt. Sometimes she tolerated her feeds well, and sometimes she did not.  We had a bloating episode, and we had to drain her stomach.  In hindsight, I'm glad that happened and I was able to see what to do, because I've had to drain her stomach one time since we have been home due to her being in pain because she was so bloated. Even if she didn't want to be held, she still wanted to hold my hand.  We have held hands since she was a 3 pound wonder in an incubator bed in the NICU.  Even then, she would instinctively wrap her tiny hands around my finger. I sang to her now like I did then.  She would crack a little smile and sleep.  Elizabeth rarely let her Minnie Mouse out of her sight.  She even took Minnie back to the OR with her.  We watched/ listed to Frozen about 25 times during our stay, and she also wanted to hold her Sophia doll quite often. 

We had some bright spots on Tuesday and Wednesday.  A long time friend, Kristen Sichler, brought a nice gift of food, snacks, drinks and a toy for Elizabeth.  It was so great to see her, and I was very touched by her kindness.  If you've ever spent time in a hospital, you know that the food (no matter how good) gets to you after a while.  It was delightful, to say the least, to have some fresh snacks and food delivered to us by Kristen.  It was great to visit with her, too.  Also, Sarah from Child Life brought us Elizabeth's beads that she has earned by her experiences thus far.  Sarah also brought me some real shampoo, which I had forgotten, and some other toiletries so that I could wash my hair and feel refreshed from being in the hospital for the third day.  I had washed up, showered, brushed my teeth, etc. on at least a daily basis while being there, but I was desperate to really wash my hair.  (It's the little things.)  Anyway, the Beads of Courage took my breath away.  Obviously, I knew that Elizabeth has been through a lot in her short life, as I have been by her side through it all.  However, the beads were a visually representation of that, and it was amazing.  I gained a newly found respect for her continued bravery, strength, and I was filled with pride at this little miracle that we have been blessed with in our lives.  She has been through so many medical procedures, appointments, etc. that she had earned many "catch-up" beads, and that means that each bead signifies 20 or 50 procedures of a certain category.  Elizabeth had also earned a variety of other beads, and mom and I sat on the couch while she slept and strung the beads together.  We ended up with four strings!! She will continue to earn beads on her journey.  When she woke up, we showed her the beads and she held on to them. It was as if she knew exactly what those beads represented, and I cried.  I was tired, overwhelmed, and those beads mean so much to me.  I could tell they also meant something to her.  Here are some pictures of her beads, and if you would like to read more about the Beads of Courage program you can visit: http://www.beadsofcourage.org/

On Thursday, we finally began to see some improvements.  Elizabeth was wanting to play, sit up and stand up in her bed, and she even allowed me to hold her quite often. We had found the perfect cocktail of pain medicines, and she was tolerating her feeds better.  I was there by myself with her.  I watched her sleep. I prayed over her.  I held her hand.  I sang to her.  I tried to sleep.  Her nurse brought other nurses in so that I could share Elizabeth's story with them. We really had amazing nurses while we were there.  Finally, by Thursday afternoon, Elizabeth was perking around.  I decided to take her to the Austin's Playroom (sponsored by the Lemieux Foundation) on her floor.  She played in there for almost an hour.  I had my training on Wednesday about how to give feeds, how to give meds, how to flush, etc.  I was beginning to feel more comfortable, and I was also feeling very grateful that Elizabeth was returning to her usual, happy, self.  Jason came down to stay with us, and we were set to be discharged on Friday.  We took a car wagon ride to the first floor to greet daddy, and then we watched the new Cinderella movie in the lobby that night.  Child Life was showing the new Cinderella for the patients and families on the 6th floor Atrium on the big movie screen. They had balloons, wands, pumpkins with mice in them, and it was magical to say the least.  I finally got to meet Alisha Cooper, the amazing mom of Avery Sue, at the movie.  We have become connected over the past few months, and I'm so grateful for all of the support and encouragement that she has given to me.  It was so great to finally get to meet her. Also, during the movie, Elizabeth set her sights on an enormous Cinderella balloon.  She actually grabbed the strings and would not let go!! I was so thrilled that she saw the balloon, especially out of her peripheral vision, and the Child Life staff thought it was so cute and allowed her to keep the balloon. 

Elizabeth had a good night from Thursday into Friday, and we were discharged on Friday afternoon (Good Friday). Jason, Elizabeth and I headed home.  The visiting nurses and the medical supply company came shortly after we came home to drop off our pump, supplies and to provide me with some other important info. I finally was able to see Celtan after a week, and we hugged and hugged and he did not leave my side the rest of the night. It is hard to be with her all week in the hospital, but it as equally as hard to not be able to see him and tuck him in bed at night.  

A huge thank you to everyone who helped us out with Celtan during the week we were in the hospital:  Aunt Lori and Uncle Steve, Nuria and Jamie, Aunt Deb.  We could not have gotten through the week without you.  A huge thanks again to Kristen Sichler for the care package, and to all of those who sent cards to us through Children's Hopsital while we were in the hospital that week.  Also, thanks to my friend Lindsay Loheyde for the amazing picture frame.  It is beautiful, and I love it. We also had a "thank you" for the benefit and prayers put up on the sign at Gino's in Chicora.  We are still overwhelmed by the love and support from everyone at the benefit and through the Go Fund Me.  Your continued love, prayers and support are no doubt the reason why Elizabeth continues to heal and thrive. 

So, we are home and we officially have a "tubie."  We had a lovely Easter with our families. I am home with both of my blessings, and I love being home with them.  I know that the feeding tube is responsible for the improvements we have seen so far with Elizabeth, even though it has only been two weeks, but I also know that my being home with her makes a difference.  If she isn't crawling after Celtan through the house, then she wants to be on my lap imitating sounds and smiling and giving me puppy kisses.  I could not ask for more.  She is growing, improving, and getting stronger.  I'm no longer having to worry on days when she is refusing to eat or only wants to eat small amounts.  Meal time is no longer stressful.  We no longer have to fight her to eat.  We have a pump that can give feeds slowly and continuously over a period of time that can be attached to an IV pole or be carried in a backpack for feeds on the go.  I have also learned how to do gravity feeds using a giant syringe.  I'm getting the hang of this feeding thing, and we are finally getting to see Elizabeth grow and thrive.  It is nothing short of amazing.  The tube makes all of this possible.  Whatever she doesn't finish goes into the tube.  Whenever she refuses to eat, it's ok, because I can just feed her through her tube.  It has truly changed our lives for the better. 

Also, since I am now home, I am taking every advantage to spend some quality time with Celtan, too.  We go to the park on any day when it is not raining.  Sometimes we even go twice a day.  He started T-ball and really loves it.  I like to go to his practices and watch him.  Sometimes it is painful to watch when he is playing in the dirt, but he is so proud of himself to be playing on a team.  He has a smile and a laugh that are totally infectious.  I totally adore my little boy, and Elizabeth adores him as well.  She really watches him, and she often gets upset if he leaves the room or she can't see him.  He is always hugging her, and he is really sweet and patient with her.  We had a nice visit from my cousin's wife and friend,Darian, and their new baby girl, Avery Quinn.  They are both gorgeous ladies, and Celtan was very proud to hold Avery.  Elizabeth touched her head, but that was about it.  It has really been a wonderful two weeks. Did I mention that I LOVE being home?