Crazy week

Well, it was a crazy week, but definitely not the craziest we have experienced--just busy.

Abby and Katelyn started swimming lessons this week, which has been so fun for them! They have been thrilled to get to swim every day and it has been so fun to be there for them!

Monday we had swimming lessons and some appointments to get physical therapy going for Hailey again.  I noticed that Hailey was throwing up more than usual again.

Tuesday we had swimming lessons and speech therapy, but I noticed that Hailey was starting to really struggle with coughing and gagging. She had pulled her NJ tube out a little bit Monday but it wasn't much so I had just pushed it back in and I was starting to wonder if maybe it had coiled in her throat and was making her gag constantly.  We took her in to the ER to see if the tube was still in the right place. It turned out the tube was in the right place, but she was coughing so hard that she was turning blue (which for her isn't too far out of the ordinary, but still not great). It scared the PA who was taking care of her in the ER a bit when he saw it. I had started to wonder if it was whooping cough and the doctors told us they were starting to wonder that too. She has been vaccinated for it but since she has DiGeorge's syndrome you just never know how her immune system is going to handle things. They admitted her to the hosptial so they could watch her over night. Ben stayed at the hosptial with Hailey and I took the girls home. I think we all got to sleep around 1am. They did a swab of her nose and it turned out to be just a cold! Thank goodness!!

Wednesday my sister in law came over early to watch the girls and then take them to swimming lessons. I met Ben at the hospital and he left for work as soon as I got there. We watched Hailey all morning and decided it was okay to bring her home. She is still really stuffy and needing lots of suctioning and breathing treatments but we are well-equipped to deal with those things at home and we figured she would be a lot happier at home.  Hailey had cried when she saw everyone wearing yellow gowns (they wear those when they aren't sure if what you have may be catching) over their clothes when she was admitted. The next day she was stunned and thrilled when I put her in the stroller to head home. She was all smiles all the way to the car.  I  got caught in torrential rain and even hail driving home with her and she kept gagging in the back seat, but finally we made it and she snuggled down into her bed as soon as I put her in it.  My good friend had watched Abby and Katelyn after swimming lessons and Sister Jeffs brought some dinner, which was great!

Thursday I was able to take the girls to swimming lessons. We came home and had lunch and then loaded up again to go to the audiologist.  I was getting Hailey out of the car at the audiologist and noticed that she had a bunch of fluid draining out of her right ear.  Turns out she has an ear infection. The audiologist was concerned to hear that Hailey had been on ECMO because that can cause permanent hearing loss.  Hailey failed this hearing screening but both ears are infected and the left tube is clogged from all the drainage. We made an appointement to come back in a few weeks when the cold has cleared.   The audiologist couldn't do anything about the ear infection so I had to call the pediatrician. They were able to squeeze us in and we had just enough time between appointments to meet the guy that delivers our oxygen for Hailey. After the pediatrician we went to pick up Hailey's prescription ear drops. They weren't going to be ready for another 45 minutes so we decided to go get them later. 

By Thursday night we were all completely worn out So glad that it is Friday.  Abby and Katelyn have been amazing little helpers.  They play with Hailey and can get her to smile when none of the rest of us can.  She loves them so much. I have been amazed by the love they show her.  They are constantly carrying the suctionng machine, untangling the oxygen lines, and helping turn off alarms on the feeding pump.  I am so grateful that Heavenly Father sent me these wonderful helpers! I couldn't do it without them.

Thanks again to everyone who has continued to pray for us and support us in so many ways. It means more to us than we can ever express!