We're Finally Going Home

We have some incredible news to share with you. The moment that we have been waiting for is finally here! After a long and incredibly challenging 3 ½ months in the hospital (103 days, 18 hours and 22 minutes to be exact), at 8:00 a.m. this morning, Kayla will finally be coming home. Jeff has covered the house in pink and white baloons; I wish you could see it. What a homecoming!

Kayla will be transported from the hospital by ambulance and will be accompanied by a Respiratory Therapist and a Registered Nurse who will transfer her care to the in-home nursing staff who will be with Kayla at home for 16 hours a day.

Jeff and I are so ecstatic to think about what life will be like with Kayla in our home. We will finally be united as a family and all be able to sleep under the same roof! I will be especially happy to finally sleep in a real bed again and start eating something besides hospital food. I have had enough turkey and gravy to last me a lifetime. Hopefully our 2 dogs (Chessy & Chai) and 2 cats (Kikko & Joey) will accept Kayla into our home without being too jealous. Our animals have been so love starved over the last few months so hopefully that they won’t care about having a new member of the family as long as they start getting some attention.

We have been so busy over the last few weeks preparing our home and Kayla's room for the nursing staff and equipment that will support her. We have also been learning about all of the support services that are available for special needs children and getting her signed up for all of the programs for which she is eligible.

The last few weeks have been full of some amazing milestones for little Kayla. On October 20th, Kayla had an oral feeding test called a Modified Barium Swallow. The speech therapist mixed my breast milk with liquid barium and then watched Kayla swallow it with an x-ray guided procedure to monitor her swallowing patterns. Thankfully Kayla did not aspirate or ingest any milk into her lungs and was fairly effective in swallowing. Before this, we had no idea how difficult a process swallowing really is. The speech pathologist says it is one of the most complex processes in the human body. Who would have known! We were able to begin feeding Kayla small amounts of milk by mouth a few days after her test. She had her first try with a bottle on October 24th. After 93 exhausting days of pumping my breast milk night and day, Kayla was able to successfully begin breastfeeding on October 28th. Way to go Kayla! Although she has a very week suck still and only takes in small amounts of milk, she is getting stronger every day.

Kayla celebrated her first Halloween and was so cute in her red and black ladybug outfit. We added some new pictures to the photo gallery. For those of you who have been asking to see more pictures, we are in the middle of completing a more permanent website for Kayla where we can post videos and as many pictures as we want. We will post a link to the site once we have time to finish it.

On November 1st, Kayla had a hearing test and passed with flying colors. She also had a follow-up eye exam which showed that the corneal clouding, which was seen in her previous exam, had cleared up. The doctor did not see any issues with her eyes this time but we will be following up with her doctor over the next year to make sure that no more issues arise.

Kayla’s breathing has continued to improve and she is now up to 12 hours a day on CPAP (pressured support only). During these CPAP trials, Kayla has to initiate all of her own breaths but is given just a little pressure support with each breath she takes to help keep her lungs fully inflated. For those of you who know anyone with sleep apnea, CPAP masks are what are used to make sure that you don’t stop breathing in the middle of the night. Kayla is usually on CPAP during the day and then a rate of 5 machine breaths per minute at night so basically she is doing most of the work now. We are hoping that someday soon we can start testing her off of the ventilator during the day. It would be so amazing to hold her without having to drag along all of her tubing. So far we have only been able to move her about 5 feet away from her bed since she was born. It will be so incredible just to be able to pick her up and carry her around the house. This is something that we would have taken for granted before this experience but now things like that seem so amazing. It’s interesting how this experience has changed our perspective on life. We really don’t take anything for granted anymore.

Over the weekend, Kayla weighed in at a whopping 10 lbs, more than double her birth weight. It is so great to see her put on weight and continue to get stronger every day.

Well, we need to get some sleep before we head out to the hospital in a few hours. Thanks for keeping up with everything and for your patience through this experience. Also, thanks again for posting so many wonderful messages on the message boards. We are looking forward to the day that we can share all of your messages with Kayla so she knows how much love and support she had during this difficult time but for now we are taking one day (or moment) at a time.

Hopefully, after we get settled in at home over the next few weeks, we can get back in touch with you all again and can finally get back to a more normal routine of life.

All of our love,

Lisa