Well, Tatum has been a little naughty. She went to bed finally this morning at around 7am. I turned her over to Lance around 6:30am. Poor little dear. She has just been seizing so much that she can't go to sleep. I am making this a quick post because she is currently sleeping:) She has been so gurgly and seizing that she has just had a terrible day. I messaged our doctors to get some advice and my Pediatrician said we could go to the hospital to have her deep suctioned. I was all about that. She sounds like she smokes 3 packs a day right now. So Lance and I loaded up Tates and her accessories, this time we included the oxygen monitor and the suction machine, new additions to the travel, but necessary. She did fabulous in the car, very unusual these days.
We arrived at the hospital got checked in, and we were waiting for the respiratory therapist to come and get us. Lance wanted to know if we got some sort of buzzer like at Texas Roadhouse. He never loses his sense of humor! As we were waiting we saw a friend (our insurance guy for like 20 years). He hasn't seen us since all of this has happened so we got to fill him in on the story. It was fun to meet his wife. Seems weird to be friends with your insurance guy, but we have had a relationship with him since Lance graduated college. That is a really long time. The respiratory guy came down and off we went to our next adventure. We got her all settled in the room and we started explaining what was going on with her. He listened to her and said that the trouble was definitely upper airway, not in her lungs so that was good news. He got her all wrapped up in a little blanket and said "I hope she doesn't fight me too much", I responded, "no worries, she can't move her arms, or anything". It is times like that when it really hits me what this stupid disease has done to her sweet body. Grrr. Turned out that I knew this man's sister. I came in when she lost her last baby and she is a volunteer on the NICU. Small world. The Resp. Therapist took a few minutes and did some suctioning, got some stuff out of her nose, but not much else. We were pretty disappointed with the results. He said it is all in the back of her throat and we could try some other things at home. Really? Can't wait to get this bill! She still sounds like she has rocks in the back of her throat.
We then went to the NICU to mail some things and the therapist suggested that we talk to one of the doctors on the NICU about some other ideas to decrease her secretions. We didn't get to see him, but I left him a note and he called me with a great idea. I will let you know if it works. I was very encouraged after talking to him.
After we left the NICU we went to Labor and Delivery to see if any of my buds were working. We visited for awhile and got Tatum in her jammies and got ready for the ride home. So good to see my friends at work. What a great group of ladies. Several of them were there the night that Tatum was born! I miss seeing them all. As we were talking all of a sudden I remembered that we had unhooked Tates from her feeding to do the suctioning and hadn't hooked her back up. Then I remembered that I had never turned the pump off. So we were strolling around leaving a trail of breast milk (liquid gold as I call it) all through the hospital! Most of it was just on the stroller, but come on. Who is running this show? You would think that I was working on 3 hours of sleep a day. Oh maybe I am. We fixed that all up and got on our way home. What a crazy day. She fell asleep in the car, which she never does but I was hopeful. We got her all settled in for bed and she is snoozing right now! I can feel a few hours of sleep coming my way.
I am so grateful that we have technology that allows us to be at home with Tatum. With Trevin we were in and out of the hospital a lot because we did not know what we were dealing with. This time around it feels good to be at home.
I am also grateful for technology that allowed us to watch conference for the past few days in our pajamas! What a blessing. I feel rejuvenated. Conference always leaves me wanting to do better. To be a better wife, mother, friend, leader, etc. There is much for me to do and improve upon. I will start tomorrow! I did hear one great thing. When Elder Christofferson quoted the lady that said "you are more important than a house" was he announcing that we don't have to clean our houses anymore. Please Please Please let it be that. I have waited a long time for that revelation. Just kidding. I think the reason that really stuck out to me is because it is true. I need to concentrate on the really important things like spending time with our kids. Of all people we know how precious this time is.
My cute friends at Utah Valley Hospital. Changing Tatum on her makeshift bed.
You are doing it my friend!!! you are remembering that YOU CAN DO HARD THINGS!!! thank you for sharing updates with us all. You are in our prayers every single day! We will pray for more sleep at rest :)
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