Our "New Normal"

Jeff and I returned from Los Angeles Sunday morning (9/18) to find that Kayla had been re-intubated and put back on the ventilator. After being off of the ventilator for 43 hours her lungs were worn out and they could not support her breathing anymore. We were very discouraged and cried a lot knowing that the next step would be a tracheostomy tube or ‘trach’. The endotrachial tube (ET) in her mouth has a short life span and two months is about as long as the doctors like to have it in without worrying about it doing damage to the vocal cords and trachea.

Jeff and I enjoyed meeting all of the families at the fundraiser in LA. We got to meet several families who had babies born with Congenital Myotonic Dystrophy so it was really great to share stories and learn from their experiences. We also met many people who have the juvenile and adult forms of Myotonic Muscular Dystrophy (MMD). What a great group of people! The most interesting thing that we learned was how varied the symptoms can be even with siblings and members of the same family. This gave us hope for Kayla’s long term prognosis although she has the most severe form of this dystrophy.

Kayla was scheduled for surgery Wednesday (9/21/05) afternoon for both a trach and a gastrointestinal (GI) feeding tube. The feeding tube is placed directly into her stomach through her stomach wall. Babies with Myotonic Dystrophy usually have problems sucking and swallowing properly and there is always a fear of aspiration where food can enter the lungs and cause pneumonia and possible death. They have to be sure that Kayla has an alternate way to eat until further testing can be run on her to ensure safe oral feeding.

Both of Kayla’s surgeries went well and she is now in her own room recovering. She was moved from the Neonatal ICU to the Pediatric ICU where one parent is able to stay with her 24/7 so life is starting to get just a little bit easier. Each room has a phone, TV & VCR so we can keep up with what’s going on outside of our little world here. They also feed breastfeeding mothers so I don’t have to leave the room to find food everyday. They also have room where they can put a cot for another parent to sleep so it’s nice to both be able to stay at the hospital all night if we want to. It has been so nice being able to wake up next to Kayla and capture the moments that we have been missing over the last two months of her life. Life is feeling just a little more normal now. As Jeff and I like to say, this is our ‘NEW normal’.

Yesterday morning the doctors began feeding Kayla again and she is tolerating her food well. They have increased her milk from 3 ml/hour yesterday to 8 ml/hour this morning and 13 ml/hour this afternoon. They are working towards 20 ml/hour by the end of the day today if all goes well. Kayla has been breathing really effectively since she had her trach put in. They have moved her to the lowest possible ventilator settings and she is tolerating it well. Yesterday they tried her off of the ventilator for an hour and she did very well. They will begin weaning her for a couple hours per day and will continue to monitor her progress. The nice thing about having a trach is that they can easily take her on and off of the ventilator without any damage to her trachea or throat. It took us a little while to get used to the idea of the trach but now we are seeing the benefits of it.

Grandma Jane left yesterday (9/23) to return back to Santa Cruz after almost 3 months with us. She has been an unbelievable blessing for the three of us. Besides keeping us fed and organized, she also provided so much love, friendship and support during these difficult months and we will miss having her around. If I can be as great a mom to Kayla as my mom is to me, Kayla will be one lucky girl. We love you MOM!

Today is Kayla’s original due date (Day 59 in the hospital) so Jeff and I are going to celebrate in her room tonight. She is officially 40 weeks old today and weighs a whopping 8 lbs. 1.6 oz. She is getting cuter by the minute, especially now that we are able to finally see her face without tubes sticking out and tape all over it.

We will keep you updated on her progress.

All of our love,

Lisa