Kayla is Showing Signs of Muscle Improvement

It has been a weekend full of ups and downs for sweet little Kayla.

On Saturday (8/13), Kayla’s lungs finally cleared up and were fully expanded. We were so excited by this news! Her feeding tube was still not in the right place to begin her feedings but we hope, in the next few days, it will work its way into place.

On Sunday (8/14), Kayla’s lungs had continued to improve so the doctor took her off of the jet ventilator and put her back on her old ventilator. What a relief! Unfortunately, not long after the ventilator was removed, they discovered that the catheter that they had put into her head during surgery on Wednesday had gotten severely infected and had to be removed immediately. It was replaced by two IV’s in her hand and foot. I sat with her through the procedures and was horrified as they attempted to find a vein to use. After 6 attempts to put the IV’s in, I had to leave the room. Poor Kayla is becoming a human pin cushion. Right after her IV’s were in place, the doctor said she would also need to do another spinal tap in a few days to see if the infection had gotten into her spinal fluid. Ugh! They also received some lab results yesterday which showed that Kayla had a super low red blood cell count that required her to have a blood transfusion immediately. They gave her 50 ccs of blood starting last night. It just doesn’t seem fair to have to go through so much at such a young age. I wish there was something that I could do to protect her from all of this pain but I know that my hands are tied. All I can do is be there to hold her hand and let her know I’m there. I have never felt more helpless in my life!

On a positive note, Kayla seemed to show signs of improvement in her muscle weakness yesterday. When I was holding her hand during the IV procedures, she was squeezing my finger really hard. She was also pulling her arm back down when I lifted it up. This is more reaction then I’ve seen from her since she was born. I am eager to get to the hospital this morning to speak with her primary care doctor about this change. I wonder if some of her muscle issues have been due to the infection that she is recovering from. Hopefully, we will continue to see improvement in this area as this is the doctor’s biggest concern still for Kayla’s long term prognosis.

One last thing, last night when Jeff arrived at the hospital, Kayla opened her right eye for him. She had done that for me early in the week as well. It was a very tender moment for Jeff. There is something about seeing her eyes that made us both feel more hopeful that she will recover soon. So far, these are the only two times that she has opened her eyes according to the nurses.

Thank you again for all of your messages. Jeff and I have been so touched by each of them. We sit down each night to read them over and over again. They really help to keep us going on difficult days and help us to maintain a strong sense of hope for Kayla’s quick recovery.

Love,

Lisa, Jeff & Kayla

Latest Genetic Test is Negative

It has been a whirlwind over the past few days so we are just finding time to update you on Kayla's progress.

Kayla began physical therapy on Sunday afternoon (8/7) to try and get her muscles moving. She has not responded to the therapy yet but we are hopeful that it will help to strengthen her muscles over time.

Jeff was finally able to hold Kayla on Sunday night. It was such a sweet moment to see the two of them together. Even though she is almost 5 lbs., she looked so tiny in his arms.

On Tuesday (8/9), we got news that one of the genetic tests came back negative – thank God. That night she began respiratory therapy to help strengthen her lungs which will hopefully help to keep her from getting pneumonia which is common for babies who are intubated.

On Wednesday (8/10), Kayla had surgery to put in a catheter behind her right ear. This allowed the doctors to remove her umbilical arterial line. The surgery went well and they said that this would allow us to hold her without significant risk. However, we had to leave Kayla’s bedside the rest of the evening because of the death of another infant in the unit, so we were unable to hold her. It was a very sad night for everyone, but especially for the family of the baby girl who passed. It really brought home the reality of how sick the babies in this unit are.

Today, Kayla had an extremely rough day. Her left lung collapsed this morning, her blood platelet count dropped to significantly low levels and she had to be transfused. They also heard a heart mummer which they are monitoring. We should get results back on her EKG in the morning. Tonight her top right lung collapsed and her CO2 levels skyrocketed. She had to be switched to a more powerful ventilator which breaths 420 breaths per minute for her. This required them to fully sedate Kayla. In the last hour her vital signs have been a little more stable so we are hopeful that she will begin to improve and regain use of her lungs.

Kayla is still unable to digest food which is very discouraging. They are giving her lipids and fluid through an IV to try and maintain her weight but are hoping that she will eventually be able to process the milk. They are considering running a weighted tube directly into her lower bowel to see if that will help.

Thank you again for all of your messages, prayers and support for our family during this difficult time. We ask that you please keep our sweet little Kayla in your prayers.

Love,

Lisa, Jeff & Kayla

I Held Kayla For the First Time

On Friday night (8/5) the nurse informed Jeff and me that they stopped Kayla's feedings again due to a backup of food in her stomach. She has not been able to digest food since she was born. They did a barium contrast study on her a few hours earlier and a follow up x-ray that showed her upper gastro-intestinal (GI) tract was not processing her food at all. The doctors ordered a drug to try and stimulate her stomach so they will start feedings again (only 1 tsp/6 hours) and will wait to see how she tolerates it. She still has jaundice pretty badly so they are hoping that she can start processing the breast milk soon which will help the jaundice resolve itself. They are keeping her under a UV (bilirubin) light to treat the jaundice until she is able to eat.

Kayla is still unable to breath on her own but is showing some signs of respiratory improvement. She is still being assisted by a ventilator but hopefully the doctors will begin testing her off of the ventilator soon. Her eyes have not opened since she was born and her face is swollen from the excess fluid in her body. Hopefully, the swelling should go down once she is able to process food again. Kayla's neurologist has informed us that he doesn't believe that Kayla has a genetic disorder. He believes that Kayla's issues stem from her brain and he believes that she has 'central hypotonia' which means that she likely had a brain injury in utero. He believes that Kayla may have had a slow, cronic depravation of oxygen. Jeff and I are so devastated but are holding out hope that the doctors will learn more over the next few days and weeks.

I had a huge milestone on Friday night! The nurse let me hold Kayla for the first time since she was born. It was a little scary at first because she has an arterial line in her umbilical cord that if moved in the wrong way, could cause her to bleed severely and could possibly be fatal. I only felt comfortable because the nurse has worked in the same Neonatal ICU for the last 25 years and was very experienced. She said holding her was good for both of us. Finally holding Kayla for the first time was so magical. I have heard that the love you feel when you first hold your child is indescribable and now I completely understand. It was the best moment of my life! (I added a picture to the photo gallery) Unfortunately, Jeff was starting to feel like he was coming down with something so he stayed home that night. Hopefully, Jeff will be able to hold her sometime very soon.

Yesterday, Saturday (8/6), my Dad, sister Kathy, and my two nieces, Maya and Noelle, left to return back home to Santa Cruz. They were all here to help us for the past week. My Mom will remain here with us at our home in Rocklin until things settle down a bit.

After visiting with Kayla for several hours yesterday (8/6) Jeff and I both feel like she is beginning to move a little more and is starting to show signs of muscle resistance. The doctors still want to see more significant movements before they can say she is improving in any way.

As of today, Sunday (8/7), we haven't received any more results from her outstanding tests so we are still playing the waiting game.

We will continue to update you as things change.

All our love,

Lisa, Jeff & Kayla Vittek