There's No Place Like Home

There's No Place Like Home

Wednesday morning started early.  Elizabeth woke up when the nurses did their 4 AM rounds.  They checked her vitals, which were all good.  She was a little bit restless and fussy, so they also gave her a dose of Motrin.  Since her surgery, they had been alternating giving her Motrin and Tylenol to manage her pain.  She can't tell us, but her surgery and other procedures have made her throat very sore.  She sounds a little bit hoarse, which is also normal.  Since she usually isn't fussy, her fussiness indicates that she is doesn't feel great.  That's usually my number one indicator that something isn't right with Elizabeth.  She is usually so pleasant, and so fussiness is out of the ordinary for her.  

I watched as Elizabeth rolled around, snuggled up with her blanket, sucked on her binky, and cuddled with her Princess Sophia doll. She really loves that doll.  In fact, she had never really attached to any toy or object until a few months ago.  Then, she really started liking her Princess Sophia doll.  She hugs it, moves it around he fingers and hands, smiles at it, reaches for it.  It has been awesome to watch her develop this attachment to this toy.  As a parent of a "normal" and a special needs child, it is both interesting and heartbreaking to see how they develop, grow, etc. differently.  Regardless, you rejoice when your child achieves any kind of milestone or does something amazing.  Elizabeth has taught us patience, and that doing things at your own pace is perfectly normal.  We rejoice in whatever he achieves whenever she achieves it.  Over the past four years, we have watched Celtan attach to different toys, achieve different things, and the one lasting object of attachment has been his blue PSU football.  Elizabeth has played with toys, but she really has never shown such a strong liking to an object or toy before her Princess Sophia doll.  (Thanks to Aunt Sandy and Uncle Eric Hackwelder for buying it for her for Christmas last year!) I definitely rejoice in the fact that she loves this doll so much.  It's just a little thing, but it matters a lot. Here is a picture of her playing with it at home. 

I'd also like to mention another item that has meant a lot to us, and we were blessed once again by this great organization in the PICU.  When Elizabeth was in the NICU at Magee after she was born, she received 3 beautiful and colorful blankets during her 5 week stay from an Non-profit organization called Project Linus.  Project Linus is dedicated to making blankets and quilts for children in need, and we are blessed to have a local chapter that supplies blankets to many Pittsburgh hospitals and shelters for the children that they care for in these places.  In the NICU, it was so nice to see something warm and soft in Elizabeth's incubator bed, especially when she was hooked up to so many wires that she couldn't wear clothes.  It meant a lot to us to have these blankets, and the kids get to keep them.  Every time we use them it is a reminder of how blessed we are and how far we have come, but also it is a reminder about the goodness of others.  So, for Elizabeth's first birthday, we wanted to do,something to give back to the people who had given us so much and helped to keep Elizabeth alive and well in the NICU.  So, we created a project called "Elizabeth's Blessing," and we collected donations for Project Linus.  We intend to do this every year on her birthday.  This year, our families and our church family generously gave money and materials to Project Linus to help them make blankets for other kids in the area.  They operate solely on donations, so we felt that by collecting donations for them that it would help them out a lot.  They were very gracious, and I think a bit overwhelmed as I pulled up and had the entire back of my minivan full of donations to unload.  We were so happy with the turn out and hope that next year's collection of donations will be just as successful. Thank you again to everyone that donated to Elizabeth's Blessing for Project Linus. Anyway, in the PICU, they gave Elizabeth another Project Linus quilt for her bed. It is bright yellow and has a Dora the Explorer theme.  It brought back a lot of memories watching her snuggled up on yet another beautiful blanket from the wonderful people at Project Linus. 

As the morning progressed, the ENT fellow, the PICU team and her nurses continued to come in and check her.  They all agreed that she had done so remarkably well, even better than they had expected, and as long as she passed her swallow evaluation that she would be able to go home.  So, they put in an order for the speech team to come up to evaluate her swallowing.  Elizabeth's fussiness was reducing, she was showing a desire to eat, and when she was awake she was sitting up and playing in her crib.  These were all great signs.  On top of that, her breathing looked great during and after the surgery.  It was so great that she didn't need to use a CPAP machine, did not need extra oxygen and did not need extra inhalers besides her Flovent, which was incredible.  She sounds a little hoarse and chokes a little when she swallows, but that is to be expected with the type of surgery that she had done.  She will basically have to learn how to swallow again with the modifications made in her throat, and it may take a little time. Once again, she was amazing us with her resilience and strength.  I tell her all of the time that she is the toughest girl I know.  

The Speech Team came in around 10 AM.  They watched her eat applesauce and chocolate pudding with ease.  They also watched her drink milk, which didn't go super well.  They agreed that she could go home as long as we proceeded with caution regarding feeding her.  They said to take her feeding slow, to watch and monitor choking episodes, showed me some techniques to reduce her choking while drinking from a bottle, and gave us some other tips on what to watch and listen for.  This meant that she could go home!! 

Dr. Jabbour stopped in and also agreed to let her come home.  He said to call if the choking and feeding difficulty did not seem to be slowly getting any better. A nutritionist also stopped by, and she had samples sent up of Pediasure and EnsureClear.  They want us to try to supplement Elizabeth's diet with these enriched drinks to help with her weight concerns. 

They discharged us around noon.  I hugged her nurse, Athena, who Elizabeth also had when they brought her to the PICU. She was wonderful, and mom hugged and thanked her too. We packed up the car and headed home. Mom and I successfully navigated our way through the Wendy's and Dairy Queen drive-thru on the way home, which sounds simple enough but it has proved problematic for us in the past. :-) We were both beyond excited to be bringing her home.  I was still in amazement, as I was expecting to be there a little longer.  I'm not complaining though, because its better to be home!

We came home, fed Elizabeth, changed her diaper, and then let her jump for a little bit and play with her toys. By her behavior, you would never be able to tell that she has surgery the day before or that she was in discomfort at all.  Again, she really is a miracle, and she continues to amaze us.  

My mom cleaned my house, despite my requests for her to sit down, and she had arranged for my dad to bring in supper for us.  I cannot thank her enough for being by my side through all of this. It has really meant a lot to us, and she has been so helpful in more ways that I can even count. Mom, if you're reading this, I love you and cannot thank you enough. 

It was a quiet night here.  There is truly no place like home.  Thanks for all of the love, prayers and support.  It had been a tremendous help, and we appreciate it immensely!