Tuesday, December 20, 2005

Kayla's Made Her First Sound

Well, it’s unbelievable but we have already been home with Kayla for over a month. So much has happened since we left the hospital. It has been pretty overwhelming getting settled into our new routine but it has been wonderful to finally have Kayla home with us. Kayla is improving by leaps and bounds each day. We have so much to be thankful for and both Jeff and I feel so blessed to have Kayla in our lives.

Kayla arrived home on Tuesday, November 8, 2005 at 10:30 a.m. by ambulance. It was so incredible to finally see Kayla outside of the hospital. She looked so beautiful the first time the sun hit her sweet face. I rode in the ambulance with her while Grandma Jane and Jeff followed us in the car. I was overcome with emotion on the ride home and cried most of the way there. Coming home by ambulance wasn’t quite what we had imagined for her homecoming but it didn’t really matter at that moment, she was finally coming home.

Kayla began to show immediate changes the first day she was home. She was awake all day and was checking out her new environment with total amazement. Jeff’s brother Mitch and our nieces, Shelby and Lindsay, arrived that day for a visit from the East coast. They spent several days helping us out and loving Kayla up. It was so great to have them here with us to help us get settled in. Both the girls fell madly in love with Kayla, it was so sweet. Jeff and I really miss having them here with us but Kayla especially misses them!

Since Kayla has been home, she has been growing like a little weed. She has surpassed the doctor’s expectations in so many areas already. What an amazing little girl. Kayla was 10 lbs the day she left the hospital and today (12/20) she weighed in at a whopping 14 lbs, almost 10 lbs more than her birth weight. She is finally starting to put on a little baby fat and is filling in her long tall frame. Kayla is nursing like a champ. Her suck has gotten stronger every day and the doctors have begun to reduce her tube feedings slightly to keep her at the proper weight. We are hopeful that she will eventually feed solely by breast during the day although she will continue to be tube fed throughout the night for the time being. It is so amazing that she is able to eat by mouth while on a ventilator. What a little fighter she is! Kayla is now over 2 feet tall (25 inches to be exact) and is in the 97th percentile for height. It looks like she definitely got the tall genes from Jeff and me.

Kayla’s ventilator settings have not been changed since we have been home and her pulmonologist does not want to make any changes until the Spring. We are hoping that she will eventually get off of the ventilator but for now we are just focusing on getting through each day. The doctor isn’t sure yet when she will have her trach removed but it could be years so we are trying not to think about it too much.

So many of you have asked what life is like for us now that we are home. It is so wonderful but is still not completely “normal”. Kayla spends most of the time in her room and only is able to leave when several of us are available to relocate her equipment to another room. We sometimes move her to the TV room especially when we have to watch her overnight. We have been able to take Kayla out of the house 5 times now for doctor’s visits. It is quite a task to get her out of the house but it is so great to be mobile. In order to leave the house we have to take 5 different machines with us and an emergency kit so we have to be incredibly organized to successfully get out and be on time to the doctor. We have to take her ventilator and tubing, a backup battery (37 lbs), a suction machine to keep her lungs clear, a pulse oxymeter to measure her oxygen saturation and heart rate and a feeding pump to feed her. We purchased a special stroller to hold everything but didn’t realize just how heavy it would all be so we are looking into some other options to make traveling a bit easier. Kayla has 9 different doctors at the moment and then also has several other services such as speech therapy and physical therapy. One of Kayla’s doctors generously makes house calls and both her speech and physical therapy will be coming to our home for visits as well. We are trying to limit her exposure to sick kids so we are grateful to the doctors who make house calls or follow her by phone. The doctors have warned us to keep her healthy during the winter months so that we don’t land back up in the hospital again. They have also cautioned us that if she gets sick, she may not have the ability or strength to fight it off so we are being very careful with her.

Kayla made her first real baby sounds on 12/2. One of the hardest parts of having a baby that is intubated or that has a trach is that they can’t cry or make baby sounds. Kayla’s trach tube is placed below her vocal cords so no air passes by the cords to allow her to make sounds. We have never heard Kayla cry up until now. Kayla has somehow figured out how to get air around her trach and is starting to make small sounds. The first time Jeff and I heard her voice we both cried. It was the sweetest sound we had ever heard. We posted up a video so you can hear her. Kayla also began moving her head and neck on her own a few weeks ago. She is able to lift her head off of you if you are holding her against your chest. She is also able to turn her head from side to side now. This is a huge accomplishment since we have had to turn her head every 1-2 hours since her birth so that she doesn't get too stiff from sleeping on one side too long.

Jeff and I have begun to live our lives in 8 hour shifts since we have been home. The nursing shifts are from 7 am to 3 pm, 3 pm to 11 pm and 11 pm to 7 am. It feels like our doorbell is constantly ringing these days. We currently have about 16 hours of nursing care each day which leaves 8 hours a day where Jeff and I care for Kayla by ourselves. Sometimes we have only 8 hours a day of coverage and sometimes we have 24 hours a day so it really varies depending on the nursing availability. So far we have had to cover a couple of night shifts (11 pm to 7 a.m.) each week which is really draining. It is impossible to sleep for more than half an hour at a time on night shifts since the equipment needs to be maintained constantly. She has a humidifier on her ventilator that needs to be filled with water and suctioned out every 45 minutes to an hour. About once an hour, Kayla’s trach needs to be suctioned to keep her lungs clear. Every three hours we need to feed her with a feeding pump unless she is breastfeeding. And of course a fresh diaper every 1-2 hours. We also have to care for her trach site (or stoma) and her feeding tube (Mic-key button) a few times a day. On top of all of that, I am still pumping breast milk when I’m not feeding Kayla so as you can see our days are pretty full. With Kayla’s busy schedule we don’t have much free time to take care of ourselves but we are trying to make an effort to get out of the house every once in a while when we have nursing coverage. We have been very happy with the nurses that have been assigned to Kayla’s case. We were not quite sure what to expect when we left the hospital so we have been pleasantly surprised. Considering how much time we all spend together, it’s a good thing that we get along so well.

Over the Thanksgiving holiday, my brother Chris and my sister-in-law Dawn came to visit us from Maryland. They brought their 5 kids out as well but we couldn’t risk Kayla’s health so the kids all stayed in Santa Cruz with my parents and sister, Kathy. It was very sad to have the kids so close but not be able to see them. It really made Jeff and I realize what life will be like for the next few years. We had a great time with Chris and Dawn but ate way too much. Kayla joined us at the table but slept through the entire meal. This was Kayla’s first trip to the first floor of our house since we had her home.

Jeff and I have been working hard to prepare the house for Christmas since we will be spending the holidays at home with Kayla. We are looking forward to spending our first Christmas together as a family. So many of you have asked us what you can do for us. Jeff and I discussed it and feel that the best thing that anyone can do for us right now is to help fund research for Myotonic Dystrophy. Although Kayla may have a shortened lifespan due to her disease, we are hopeful that the recent research developments will prove to be successful in finding a cure in her lifetime. We are working on a plan right now to get more involved with the MDA (Muscular Dystrophy Association). If you would like to help, please donate to the MDA, specifically for Myotonic Dystrophy research, I have posted a link on our registry page. You can donate to the MDA, specifically for Myotonic Muscular Dystrophy (MMD, Steinert’s Disease), and make the gift in honor of Kayla. For those of you who are interested, her full name is Kayla Michele Vittek. Kayla is such an amazing little girl with such a beautiful spirit and has touched the lives of everyone who has crossed her path. Please help us help her by making a donation.

Well, that’s all for now. I promise to update the site more regularly now that we are getting settled in. We will be adding photos regularly so keep checking back.

We wish you all a healthy, happy holiday season. Thank you again for all of your continued prayers, love and support.



No comments: