Wow! Being home feels so good! This is not quite the life I was living in Utah (a few more events on my calendar). But back to the chaos, which is actually more ‘normal’. I have said that I wanted to post so many times over the last couple of weeks and found it just impossible to fit in. Coming home to two back- to- school nights, father/ daughter BBQ, visits to the hospital, and homework and sports, makes for very little free time. I need to go back and tell about the trip home for all those who don’t see us everyday. Our title is a little cheesy, but one I got from my friends in Utah. They immediately relate the Wizard of Oz to Kansas and I got a few pairs of ruby sleepers as I left! (But there really is no place like home).
We got to the hospital early and had to wait for the ambulance to come. Girls were strapped in and taken to the airport. What an exciting ride. My stomach was in knots and I still wasn’t sure it was all really going to happen. I would not relax until we were sitting on the plane and it was taxiing down the runway. We got to the airport and got the girls situated in their seats. They looked so cute next to each other, just sleeping through it all. Plane took off and Bo and I took a deep breath of relief. The long days and nights of Utah were quickly fading as we headed HOME. Boy, there were times those last few days that I wasn’t sure it was EVER going to happen. The jet was beautiful, a very smooth ride, and the girls did great. I was so worried about their oxygen, but neither showed any signs of distress. We landed in KC with a crowd of friends and …….the news reporters. The girls homecoming was on the local stations and they had interviewed the kids beforehand. So much commotion and so much excitement. It was overwhelming. I had to head straight to the hospital with Elizabeth in the ambulance and Bo and the kids followed close behind. It was so weird to check her into a new facility. My ‘home away from home’, St. Mark’s, was quite different than our new environment. Lots more beds, lots more doctors and nurses, and lots more security check points. I was so used to everyone recognizing me and just ‘waving’ my way in. I couldn’t help but wonder what was Elizabeth thinking or noticing in her new crib? She was put in isolation for the first few days and we met our new neonatologist. It was strange getting used to this new staff and their approach. I did wonder a few times about our timing for return, I always had this weekend in my mind as my goal, but how it all ‘fell’ into place (well, lets be honest, it took a lot of effort by Dr. Smith in Utah, Bo and I, and of course our Ascension community), but really it did come together rather quickly. Once we got to Childrens’ Mercy though, my question was answered. God had a plan and this was definitely HIS plan for Elizabeth. We had such good care in Utah, and our experience there was great. The doctors and nurses truly LOVED our girls and we all felt it everyday. But as you all know, if you live in KC, Childrens’ Mercy is top knotch and has so many ‘extra’ services. Elizabeth has had problems breathing out of her left nostrils all along. I thought it had to do with the trauma of high flow oxygen and suction at such a young age. An ENT was brought in and she was x-rayed. They found her to have choanal atresia- appartently she was born with this blockage and it will eventually have to be lasered open. They will try to hold off until she is school age. Anyway, this is directly related to her eating problems. They brought in an OT and she pinpointed the problem right away. With only one nare to breath out of, it is like running a marathon every time she eats. She can just never catch her breath. The OT and I are working on slowing down her feedings so she can ‘catch her breath’ and this is really working (now she walking a marathon instead of running). Finally, the opthomologist here decided that she DID need the laser surgery for her ROP. We had that surgery Tuesday and she is recovering slowly. Poor little thing. Her eyes are swollen and watery and she did not look herself yesterday or today. Our little fighter continues for forge ahead. I cannot wait to just get her home and LOVE on her 24-7! If I think too hard about all she has been through, it really breaks my heart….
In the meantime, Ellen is doing great. We went to her first pediatrician appointment and she is excited about her progress. Ellen is weighing in at EIGHT POUNDS!!! (of course this was Nicky’s birth weight and she is 4 months, but whatever). She is paying us back for all the quiet time in the hospital and good night sleeps I got. She also has decided that being held is very nice and she prefers it now all the time. Her new nick name: Miss Priss….I want what I want, or I will cry! Don’t really care though, I have been waiting so long.
Today, we just got the news that we will be going home TOMORROW with Elizabeth. Oh my gosh! Is this really going to happen?! She will come home on oxygen and a feeding tube. I have been in training all day today learning about all the equipment, putting in the feeding tube, and taking another CPR class. Bo and I both have to learn how to put the feeding tube in and demonstrate it before we are released. We also get to learn the cpr class with the baby dummies this time instead of just watching the video. We will be prepared! Once again, lots to pull together to make it happen, but the doctors are very supportive of getting her home. She has been in the hospital too long, and I really believe a certain amount of healing can truly take place in a loving home…..Ellen has already taught me that. Her coloring is better, her eyes sparkle, and she is more alert. LOVE and affection are medicines too.
Got to get going, lots more to do, but will post pictures soon…….
Love to all, Stacy