Ella is still recuperating and so I thought I’d give her a little break from writing the blog. So I know I’m not as funny as the little one (not as cute either), but for now I will have to suffice. I apologize for not posting sooner; it’s been two weeks and we’ve hit a few bumps along the road. Ella’s surgery went as planned on the 16th. She got her G-tube (feeding tube) put in and her rectum rerouted to its appropriate spot. You can see in the picture the large appliance on her belly that is holding the feeding tube in place. Thankfully, she won’t have that forever. In 2-4 weeks, when she is a bit bigger and her stomach is more healed, they will replace the appliance with what is called a mickey button. Basically it is a flap (flush to her stomach) that we will be able to open and close when she needs to be fed. Her new bottom looks amazing. In fact, the most exciting thing that happened two days after the surgery was that she pooped out of her new hiney! This little event that us healthy folks do every single day and take for granted was a milestone for my baby Ella, and one that we celebrated. So all in all her surgeries went well. She came out of the OR looking great, until we noticed her foot. Before surgery an IV was placed in her left foot. She couldn’t eat for 6 hours prior to surgery and this was making her quite mad. She was kicking (again with the bicycle), screaming (not literally of course), and turning beet red. When they got up to the OR, before they even put her to sleep, they realized that her IV had infiltrated. When this happens the IV fluids leak into the surrounding tissue causing a chemical burn. This was upsetting for us and certainly painful for Ella, but it has since improved and looks a lot better than it did a week ago. And as if this little girl needed another thing to cause her discomfort, her trach site (called the stoma) became inflamed last week and began oozing discharge. While in the OR the anesthesiologist recommended they change her trach to a cuffed one. This kind of trach allows for minimal air leaks. On Friday, when Erik and I performed her trach change, we noticed that her stoma looked very irritated and swollen. The ENT thinks it is inflamed because of her skin not being used to the different type of trach. They’re giving her steroid drops down the trach, which hopefully will help the swelling and redness come down. So with good reason, Ella has had days when she’s been extremely agitated and fussy. On her bad days, she cries often and is inconsolable. She is off the morphine, but they give her Tylenol from time to time to take the edge off. Yesterday was our first good day, thank God. She took long naps, but also had many calm awake periods. She played with the occupational therapist and even practiced sucking on her passy.
As for Erik and I, we too have our good days and bad days. For Erik, it absolutely kills him to leave Ella and I on Monday mornings. We keep in close contact during the week, but of course he wants to be here and see for himself what’s going on with the little one. For myself, it is very difficult to be without my husband and family. There are days when I could really lean on them physically and emotionally, days when the stress of it all starts to drain you. There are still times when we mourn the loss of a typical baby experience. After three months of living our lives in a NICU, we long for that day when we can take Ella home and finally be a family. Never in a million years would we change having Ella. Sure, we wish she was healthy - we definitely would change that if we could. And certainly if we could, we would take away all of her pain in a heartbeat. But, despite all the heartache that we are going through she remains the best thing that has ever happened to us. She has brought a joy to our lives unlike anything we have ever experienced. On days when I am down, I try to remember that it is not about me, but about Ella. She is our mission, the reason we wake up each day, continue to put one foot in front of the other and keep going. And every morning when I arrive at the hospital and see her beautiful eyes and sweet lips, a smile comes to my face reminding me of how blessed I am to have her in my life.
Thank you again for all your prayers for Ella and our family. Please continue to pray for her healing and our strength.